Articles de revues sur le sujet « Family life education – United States – Juvenile literature »

AbstractThis glimpse into sex education in the Los Angeles region illustrates the eugenic ideas about racially “fit” reproduction that emerged in family life curricula during the Second World War. Ideas about eugenic reproduction in public schools responded to broader cultural fears about increasing divorce rates, criminality, immigration, and birthright citizenship. Eugenics in sex and family life education, importantly, portrayed a woman’s choice of mate as a civic responsibility, a move that paved the way for future conflicts about teaching gender and sexuality in public school sex education. Amid a half-century-long conflict over abstinence-only versus comprehensive sex education in public schools, topics like genetics and heredity have come to be widely accepted by both sides—recognized as a presumably value-neutral staple of sex education in US public schools. Yet recent innovations in genetic and reproductive technologies, as well as the conflict over trans and queer youth in the United States, challenge the assumption that teaching genetics and heredity in public schools really is “value neutral.”

AbstractThe 2020 Juvenile Residential Facility Census reports that roughly 25,000 youth in the United States (U.S.) are incarcerated—placing the United States as the leading nation in number of juveniles in correctional facilities worldwide. This paper aims to highlight an overlooked population impacted by this issue: not the incarcerated youth themselves, but their siblings. This paper first grounds historical trends, the effects of racialized sociopolitical systems on disparate rates of incarceration, and the current state of youth incarceration, with a specific focus on impacts on families. This paper reviews the literature on how families are affected by the juvenile justice system in terms of their well‐being, education, and other outcomes—drawing from the small body of research directly on siblings and hypothesizing impacts in need of further study based on families' experiences in the criminal justice system. We present historical and current issues/limitations to understanding and addressing the impacts of youth incarceration on siblings, concluding with areas of future research needed to address the impacts that a youth's incarceration has on their siblings and family.

This literature review explores the sociocultural experiences of international graduate students in universities in the United States. In addition to the typical challenges faced by students going to universities in America, international graduate students undergo extra stress. Research has shown that students face issues such as negotiating the U.S. health care system, the pressures of competency in American English, balancing financial concerns, social connectivity, and anxiety due to isolation from family and friends. These factors place students at risk for developing health problems. Significant findings have indicated that institutions and students’ age play important roles in impacting students’ successful adjusting experiences even though the struggle for acculturation is a personal task. We organized our analysis and discussion around how to help graduate students to obtain sociocultural support and concluded with some suggestions on ways to address inadequacies within the institutional systems to make the schools welcoming for international students.

Introduction: Breast cancer-related lymphedema (BCRL) is a treatment sequela with negative physical and psychological implications. BCRL is a lifetime concern for survivors and is currently incurable. With the increase in the Latino population in the United States, it is critical for the cancer care community to address factors that increase BCRL risk and negatively impact long-term quality of life. This literature review undertook to identify successful intervention strategies for BCRL among Latina survivors. Methods: Multiple databases were searched for published articles from 2006 to 2020. PRISMA guidelines were utilized. Data were extracted related to physical activity, diet, and psychosocial stress concerns of Latinas at risk for or living with BCRL. Results: Eleven interventions combined education and skill-building techniques to address physical activity, diet, and stress management for BCRL. Family involvement, peer-mentoring, culturally tailored education, and self-care skill development were identified as important for Latina survivors. Conclusion: Latina survivors may benefit from culturally tailored BCRL education programs and self-management interventions. Health care professionals and researchers should consider cultural influences when developing clinical intervention strategies to enhance outcomes for Latinas at risk for living with BCRL. In addition, including family members and/or peers in such strategies may be helpful to Latina survivors.

Abstract A growing body of literature shows that family and unpaid caregivers of older adults with cancer are assuming more care responsibilities, especially after discharge from an inpatient admission, and frequently report feeling unprepared to do so. Interprofessional collaborative practice can rectify this gap to help ensure caregivers are included in the care team and patient education in the hospital. This retrospective data analysis of electronic health record data examines the prevalence of caregiver involvement in education activities conducted by health care practitioners for older adult cancer inpatients at an academic medical hospital in the midwestern United States. Our dataset includes a total of 676 admissions of older adult cancer inpatients (565 unique patients) between 9/1/2018 and 10/1/2019. Descriptive statistical analyses were conducted to determine the prevalence of caregiver involvement in patient educational activities. The average patient was 75 years old (range: 66-89), white(95%) and male (57%). Approximately 5,720 educational topics were discussed with patients, and 88% of admissions included some patient education. Caregivers were included in 29.6% of educational topics discussed and at least one education session for 42.9% of all admissions. Caregivers are important collaborators in supporting the health and well-being of older adults with cancer, but they are often not included in patient educational activities prior to discharge. Practioners may need to evaluate barriers to including caregivers in patient education activities. A better understanding of this gap in education can help inform future interprofessional collaborative practice initiatives.

At the annual conference of The American Psychiatric Association (APA) in Miami, there was a workshop entitled "Family Crisis". The results of a study said that in the last 30 years, 60% of families in the United States ended in divorce, and 70% of their children did not develop well, behave deviant or antisocial. For example seen juvenile delinquency, abuse of NAZA (Narcotics, Alcohol, and other Addictive Substances), promiscuity, deviant sexual behavior and so on. It was also stated that divorce rates are increasing, marriages are decreasing because many people choose to live together without marriage or single life and free sex. Disloyalty (abuse) among families in the US turned out not to be the monopoly of husbands alone, but 40% of the wives there were also involved in affair with third parties. Of the five marriages in the first five years, three divorces occurred. The author gives the purpose of writing to discuss the crisis in the household, rebuild the household and give Christian values ​​in counteracting divorce. The author uses descriptive literature research method data and provides research results: How a harmonious family can be established dynamically if we base our family building on the basis of strong Christian spirituality values ​​accompanied by a fabric of good communication between us and our children. Surprisingly few studies have explored the implications of divorce happened because family can not be established, especially in young adulthood. This study addresses several theoretical arguments linking divorce in the side of spiritual value with reduced religious involvement in young adulthood and tests relevant hypotheses using data from a unique sample. Results show that divorce in the side of spiritual value is associated with substantially lower communicate religious involvement among young adults in their families house.

Abstract Context: Latino cancer patients experience disparities in access to and quality of palliative care. Objectives: This literature review addressed three aims: 1) to summarize existing palliative care interventions that aim to improve the quality of life for Latino cancer patients; 2) to evaluate the health care decision-making between providers and Latino cancer patients/family members who received palliative care, and 3) to describe culturally sensitive palliative care interventions for Latino cancer patients in the United States. Methods: We conducted a literature review using multiple electronic databases (PubMed and the University of Texas Medical Branch database) to identify potentially relevant empirical research published from (month) 2017 through March 2022. Peer-reviewed, empirical studies that implemented a palliative care intervention with a focus on the quality of life, health care decision-making, cultural sensitivity, and patient experiences with the palliative care intervention were reviewed. Studies included participants from pediatric to adult populations and other minority populations (with the inclusion of Latino and Hispanic participants) in their sample. Articles and palliative care interventions had to have taken place in the United States and had to be written in English. Any other language or different location were not included. Results: Of the twenty-two articles that satisfied eligibility criteria, only eleven articles focused on Latino cancer patients. Approximately half of the included? studies involved the quality of life, health care decision-making, and cultural sensitivity in their interventions. Sixteen articles incorporated cultural sensitivity throughout palliative care intervention development. Interventions that aimed to provide culturally sensitive palliative care made generalizations (culture differences within different countries' representation, language, education level, and gender) that were not applicable to all Latino and Hispanic groups. Discussion: Few empirical studies focused on palliative care interventions for Latino cancer patients. Many interventions for Latino and Hispanic cancer patients lack cultural sensitivity. Results suggest that interventions currently used are moderately acceptable; Future interventions should consider cultural sensitivity, avoid generalizations among Latino cancer patients, and improve the engagement of health care decisions between the clinical team and patient/family members. As palliative care intervention is personalized for each patient, the medical team should keep an account in understanding the patient background to construct a culturally competent treatment and engagement with patients and their caregivers/community in order to provide a better quality of life. Citation Format: Carlos J. Orellana Garcia, Julia Stal, Cara Pennel. Palliative care interventions for Latino cancer patients: A review of the literature between 2017-2022 [abstract]. In: Proceedings of the 15th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2022 Sep 16-19; Philadelphia, PA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2022;31(1 Suppl):Abstract nr A029.

Life stories such as memoirs reflect the interplay of autobiographical reasoning, and collective remembrance at a time and in a place where memoirs are written. Using this perspective for understanding life-writing, I discuss memoirs written by two women who were formerly internees in the Nazi extermination camp of Auschwitz-Birkenau. Olga Lengyel (1909–2001) lost her entire family in the camp and wrote her memoir in Paris just after the war. Her account describes the atrocities that she observed with few reflections on her own experiences. Mira Ryczke Kimmelman, (1923–) wrote her memoir more than half a century later as an emigre to the United States after the war where she and her husband raised their children and where she is presently an active participant in the survivor community. Her memoir is written as what Tomkins and McAdams have portrayed as a characteristic American redemptive account of successfully overcoming adversity. Following a happy childhood and suffering through the Shoah, Mira Kimmelman is a generative mentor who lectures on her experiences and leads tours for young people back to her homeland. She is concerned that the next generation be spared the suffering of the Shoah.

Abstract This article examines the life and thought of Erich Heller, a prolific scholar of Austrian and German literature and philosophy. Born into a German Jewish family in the borderland of Habsburg Bohemia, Heller graduated from Prague’s German University, only to be forced to flee the Nazi invasion. He found refuge in Britain before moving ultimately to the United States where he taught for two decades at Northwestern University. Erich Heller’s physical and intellectual journey highlights both moments of conflict and cultural transmittance between German-speaking Central Europe and the Anglophone world. Heller was only half at home in the new world where he helped rehabilitated German and Austrian literature and thought abroad. The article explores Heller’s intellectual development throughout his voluntary and forced migrations and traces changes in his political and philosophical identity. Heller’s life, thought, and success are considered in two main contexts: that of his generation of Bohemian-born émigrés and of the postwar atmosphere in American higher education, in particular, the role of German-speaking scholars within it. It analyzes the way in which Heller understood his own transcendence within the national frames and its implication. The article answers two questions: What were the main contributing factors to Heller’s success in the postwar academic discipline German and Austrian Studies and what is the relevance of his teaching today?

The United States (US) has been at war for almost two decades, resulting in a high prevalence of injuries and illnesses in service members and veterans. Family members and friends are frequently becoming the caregivers of service members and veterans who require long-term assistance for their medical conditions. There is a significant body of research regarding the physical, emotional, and social toll of caregiving and the associated adverse health-related outcomes. Despite strong evidence of the emotional toll and associated mental health conditions in family caregivers, the literature regarding suicidal ideation among family caregivers is scarce and even less is known about suicidal ideation in military caregivers. This study sought to identify clusters of characteristics and health factors (phenotypes) associated with suicidal ideation in a sample of military caregivers using a cross-sectional, web-based survey. Measures included the context of caregiving, physical, emotional, social health, and health history of caregivers. Military caregivers in this sample (n = 458) were mostly young adults (M = 39.8, SD = 9.9), caring for complex medical conditions for five or more years. They reported high symptomology on measures of pain, depression, and stress. Many (39%) experienced interruptions in their education and 23.6% reported suicidal ideation since becoming a caregiver. General latent variable analyses revealed three distinct classes or phenotypes (low, medium, high) associated with suicidality. Individuals in the high suicidality phenotype were significantly more likely to have interrupted their education due to caregiving and live closer (within 25 miles) to a VA medical center. This study indicates that interruption of life events, loss of self, and caring for a veteran with mental health conditions/suicidality are significant predictors of suicidality in military caregivers. Future research should examine caregiver life experiences in more detail to determine the feasibility of developing effective interventions to mitigate suicide-related risk for military caregivers.

A caregiver is a constantly evolving role that an individual most likely undertakes at some point in their lifetime. With discoveries and research in increasing life expectancy, the prevalence of neurological-related diseases, such as Alzheimer’s disease (AD) and dementia, is certainly likely to require more caregivers. The demand for AD caregivers is escalating as the prevalence of the disease continues to rise. The projected rise in AD within the Hispanic population in the United States over the next few decades is expected to be the most significant among all ethnic groups. The Hispanic population faces unique dementia risks due to cultural factors like language barriers, lower education, and limited healthcare access. Higher rates of conditions such as diabetes and cardiovascular disease further elevate dementia risk. Family dynamics and caregiving responsibilities also differ, affecting dementia management within Hispanic households. Addressing these distinct challenges requires culturally sensitive approaches to diagnosis, treatment, and support for Hispanic individuals and their family’s facing dementia. With AD and other dementia becoming more prevalent, this article will attempt to expand upon the status of caregivers concerning their economic, health, and cultural statuses. We will attempt to focus on the Hispanic caregivers that live in Texas and more specifically, West Texas due to the lack of current literature that applies to this area of Texas. Lastly, we discuss the ramifications of a multitude of factors that affect caregivers in Texas and attempt to provide tools that can be readily available for Hispanics and others alike.

Background Findings from several international studies have shown that there is a significant relationship between literacy skills and socioeconomic status (SES). Research has also shown that schools differ considerably in their student outcomes, even after taking account of students’ ability and family background. The context or learning environment of a school or classroom is an important determinant of the rate at which children learn. The literature has traditionally used school composition, particularly the mean SES of the school, as a proxy for context. Focus of Study This study examines the relationships among school composition, several aspects of school and classroom context, and students’ literacy skills in science. Population The study uses data from the 2006 PISA (Programme for International Student Assessment) for 57 countries. PISA assesses the knowledge and life skills of 15-year-old youth as they approach the end of their compulsory period of schooling. Research Design Secondary analyses of the data describe the socioeconomic gradient (the relationship between a student outcome and SES) and the school profile (the relationship between average school performance and school composition) using data for the United States as an example. The analyses demonstrate two important relationships between school composition and the socioeconomic gradient and distinguish between two types of segregation, referred to as horizontal and vertical segregation. The analyses discern the extent to which school composition and classroom and school context separately and jointly account for variation in student achievement. Findings The results show that school composition is correlated with several aspects of school and classroom context and that these factors are associated with students’ science literacy. Literacy performance is associated with the extent to which school systems are segregated “horizontally,” based on the distribution among schools of students from differing SES backgrounds, and “vertically,” due mainly to mechanisms that select students into different types of schools. Conclusions An understanding of socioeconomic gradients and school profiles for a school system is critical to discerning whether reform efforts should be directed mainly at improving the performance of particular schools or at striving to alter policies and practices within all schools. Both horizontal and vertical segregation are associated with lower student outcomes; therefore, we require a better understanding of the mechanisms through which students are allocated to schools. When the correlation of school composition with a particular contextual variable is strong, it calls for policies aimed at increasing inclusion or differentially allocating school and classroom resources among schools serving students of differing status.

Relevance. The history of armed attacks on educational institutions originated in the United States, but in recent decades this social phenomenon has spread widely to other countries, including Russia. Mass social tragedies associated with deaths of the youth cause great concern among all groups of population and require comprehensive prevention measures.The objective of the study is to identify social environmental factors that shape school shooter mentality, as well as to explore various strategies to prevent attacks in educational institutions of different levels (kindergartens, schools, universities).Methods. Armed attacks in educational institutions are the focus of our research. The material includes published research data (articles, dissertations and monographs) in English and Russian. The set of methods included generalizing conclusions published by peer investigators regarding the considered matter. Bibliographic databases (i.e. Federal State Institution “Russian State Library”, library platforms of Lomonosov Moscow State University and Peoples’ Friendship University of Russia) and scientific networks (ResearchGate, Web of Knowledge, Scopus, Google Scholar, Academia.edu, Mendeley) were used to explore research data. The findings present over 127 thousand publications regarding meta-analysis of armed attacks and mass shooting that occurred in educational institutions, as well as their social, psychological, cultural, and informational implications.Results and Discussion. The analysis of data regarding armed attacks in educational institutions demonstrates a very specific phenomenon that belongs to a specific type of crimes. Findings show that mass shootings of schoolchildren and students occur annually in the United States, apparently due to the free circulation of firearms and the cult of the guns. From 1974 to 1921 the US witnesses over 50 major armed attacks causing over a hundred deaths. In China, this problem is also substantial due to the country’s rapid and profound social changes (reforms, gender imbalance and demographic policy). Cold arms (knives, hammers) is the major weapon of assault in China, which caused deaths of at least a hundred children. In Europe, school shooting is not a critical problem, with only few cases reported by a few countries (Germany, Denmark and Finland). Russia shows no increase in the number of armed attacks using firearms or cold arms. In general, such incidents occur annually (1 to 4 violence cases) and are associated with slumped standards of living, increased aggression, social and psychological maladaptation among the population. To solve this problem, an integrated approach is needed, which could bring together technical and social aspects. The technical aspects imply broader use of video surveillance security systems and barriers, as well as regular profound inspections of school grounds (the venue and inside the school building). However, preventive measures should effectively provide for the social aspect to ensure expanded and deeper social and communicative relations within the student – administration / school teacher – parents paradigm. Taken together, these measures are bound o mitigate many factors of antisocial, aggressive, and violent behaviors in schools.Conclusion. A comprehensive analysis of Russian and foreign literature regarding armed attacks in educational institutions suggests that this is an independent psychosocial phenomenon. A system approach of the study allowed to establish a school shooter’s presumable portrait, as well as to identify typical social and personal characteristics of a shooter’s personality (i.e. social isolation; lack of individual ability to cope with life difficulties, such as study failures, conflicts at school or in the family; weak social integration at school and in other communities; decreased self-esteem and identity-related problems, in particular gender-related issues).

Abstract Abstract 4731 Deep vein thrombosis (DVT) and pulmonary embolism (PE) impose a major public health burden in the United States, affecting an estimated 350,000 to 600,000 individuals and accounting for ~100,000 deaths in the United States each year, according to The Surgeon General's Call to Action (CTA) To Prevent Deep Vein Thrombosis and Pulmonary Embolism (2008). In response to this CTA, the National Blood Clot Alliance (NBCA), a national, community-based, non-profit organization dedicated to the prevention, diagnosis, and treatment of thrombosis and thrombophilia, conducted a survey to benchmark DVT/PE awareness among the general public. Little information about the public's knowledge of venous thromboembolism (VTE) is found in the literature, making this one of the most comprehensive, relatively large surveys of its kind. This DVT/PE awareness survey was conducted in November 2009, among a representative cross-section of 500 adults, >20 years, participating in online research panels. Among all respondents surveyed, just 21% said that they had heard of a medical condition called DVT (unaided), and, among this group (n=104), 86% correctly identified it as “deep vein thrombosis” on an aided checklist. Among those respondents who had not heard of a DVT or who had made an incorrect checklist selection (n=411), when DVT was identified for them as “deep vein thrombosis,” 29% then said they knew what it was. Among all respondents, just 16% said that they had heard of a medical condition called PE, and, among this group (n=80), 83% identified it correctly as “pulmonary embolism” on an aided checklist. Awareness of specific DVT risk factors and DVT/PE signs/symptoms was low. Results of this survey show that the medical lexicon poses substantial barriers: only 23% of all respondents reported to know what thrombophilia means and just 9% had heard of VTE. Conversely, 8 in 10 of all respondents said that they do know what a blood clot is, and virtually all respondents (98%) said that they believe blood clots can be life-threatening. The leading factors respondents said they believe are risks for causing blood clots included: family history of blood clots (73%), major trauma (71%), major surgery (69%), and being bedridden (68%), while <60% of respondents mentioned other risk factors, such as cancer, chemotherapy, pregnancy, hormone therapy and birth control pills, or age. The public health impact of DVT/PE is significant, while DVT/PE public awareness, including awareness of important DVT/PE risk factors and signs/symptoms, is disproportionately low. These survey data support recommendations in the Surgeon General's CTA, underscoring the urgent need for education, especially the use of simplified terms, to close gaps in DVT/PE public awareness/knowledge, and can help guide educational initiatives relative to DVT/PE that may contribute to decreased morbidity and mortality. Disclosures: Ansell: Bayer, Inc: Consultancy; Bristol Myers Squibb: Consultancy, Data Safety Monitoring Boards; Daiichi Sankyo: Consultancy; Boehringer Ingleheim: Consultancy; Ortho McNeil: Consultancy; Sanofi Aventis: Speakers Bureau. Brownstein:Ortho-McNeil, Division of Ortho-McNeil-Janssen Pharmaceuticals, Inc.: Data reported from project supported by Ortho-McNeil, Division of Ortho-McNeil-Janssen Pharmaceuticals, Inc.

This paper aims to portray the overall picture of poverty in the world and mentions the key solution to overcome poverty from a critical perspective. The data and figures were quoted from a number of researchers and organizations in the field of poverty around the world. Simultaneously, the information strengthens the correlations among poverty and lack of education. Only appropriate philosophies of education can improve the country’s socio-economic conditions and contribute to effective solutions to worldwide poverty. In the 21st century, despite the rapid development of science and technology with a series of inventions brought into the world to make life more comfortable, human poverty remains a global problem, especially in developing countries. Poverty, according to Lister (2004), is reflected by the state of “low living standards and/or inability to participate fully in society because of lack of material resources” (p.7). The impact and serious consequences of poverty on multiple aspects of human life have been realized by different organizations and researchers from different contexts (Fraser, 2000; Lister, 2004; Lipman, 2004; Lister, 2008). This paper will indicate some of the concepts and research results on poverty. Figures and causes of poverty, and some solutions from education as a key breaker to poverty will also be discussed. Creating a universal definition of poverty is not simple (Nyasulu, 2010). There are conflicts among different groups of people defining poverty, based on different views and fields. Some writers, according to Nyasulu, tend to connect poverty with social problems, while others focus on political or other causes. However, the reality of poverty needs to be considered from different sides and ways; for that reason, the diversity of definitions assigned to poverty can help form the basis on which interventions are drawn (Ife and Tesoriero, 2006). For instance, in dealing with poverty issues, it is essential to intervene politically; economic intervention is very necessary to any definition of this matter. A political definition necessitates political interventions in dealing with poverty, and economic definitions inevitably lead to economic interventions. Similarly, Księżopolski (1999) uses several models to show the perspectives on poverty as marginal, motivation and socialist. These models look at poverty and solutions from different angles. Socialists, for example, emphasize the responsibilities of social organization. The state manages the micro levels and distributes the shares of national gross resources, at the same time fighting to maintain the narrow gap among classes. In his book, Księżopolski (1999) also emphasizes the changes and new values of charity funds or financial aid from churches or organizations recognized by the Poor Law. Speaking specifically, in the new stages poverty has been recognized differently, and support is also delivered in limited categories related to more specific and visible objectives, with the aim of helping the poor change their own status for sustainable improvement. Three ways of categorizing the poor and locating them in the appropriate places are (1) the powerless, (2) who is willing to work and (3) who is dodging work. Basically, poverty is determined not to belong to any specific cultures or politics; otherwise, it refers to the situation in which people’s earnings cannot support their minimum living standard (Rowntree, 1910). Human living standard is defined in Alfredsson & Eide’s work (1999) as follows: “Everyone has the right to a standard of living adequate for the health and well-being of himself and his family, including food, clothing, housing and medical care and necessary social services, and the right to security in the event of unemployment, sickness, disability, widowhood, old age or other lack of livelihood in circumstances beyond his control.” (p. 524). In addition, poverty is measured by Global Hunger Index (GHI), which is calculated by the International Food Policy Institute (IFPRI) every year. The GHI measures hunger not only globally, but also by country and region. To have the figures multi-dimensionally, the GHI is based on three indicators: 1. Undernourishment: the proportion of the undernourished as a percentage of the population (reflecting the share of the population with insufficient calorie intake). 2. Child underweight: the proportion of children under age 5 who are underweight (low weight for their age, reflecting wasting, stunted growth or both), which is one indicator of child under-nutrition. 3. Child mortality: the mortality rate of children under 5 (partially reflecting the fatal synergy of inadequate dietary intake and unhealthy environments). Apart from the individual aspects and the above measurement based on nutrition, which help partly imagine poverty, poverty is more complicated, not just being closely related to human physical life but badly affecting spiritual life. According to Jones and Novak (1999 cited in Lister, 2008), poverty not only characterizes the precarious financial situation but also makes people self-deprecating. Poverty turns itself into the roots of shame, guilt, humiliation and resistance. It leads the poor to the end of the road, and they will never call for help except in the worst situations. Education can help people escape poverty or make it worse. In fact, inequality in education has stolen opportunity for fighting poverty from people in many places around the world, in both developed and developing countries (Lipman, 2004). Lipman confirms: “Students need an education that instills a sense of hope and possibility that they can make a difference in their own family, school, and community and in the broader national and global community while it prepare them for multiple life choices.” (p.181) Bradshaw (2005) synthesizes five main causes of poverty: (1) individual deficiencies, (2) cultural belief systems that support subcultures of poverty, (3) economic, political and social distortions or discrimination, (4) geographical disparities and (5) cumulative and cyclical interdependencies. The researcher suggests the most appropriate solution corresponding with each cause. This reflects the diverse causes of poverty; otherwise, poverty easily happens because of social and political issues. From the literature review, it can be said that poverty comes from complex causes and reasons, and is not a problem of any single individual or country. Poverty has brought about serious consequences and needs to be dealt with by many methods and collective effort of many countries and organizations. This paper will focus on representing some alarming figures on poverty, problems of poverty and then the education as a key breaker to poverty. According to a statistics in 2012 on poverty from the United Nations Development Program (UNDP), nearly half the world's population lives below the poverty line, of which is less than $1.25 a day . In a statistics in 2015, of every 1,000 children, 93 do not live to age 5 , and about 448 million babies are stillborn each year . Poverty in the world is happening alarmingly. According to a World Bank study, the risk of poverty continues to increase on a global scale and, of the 2009 slowdown in economic growth, which led to higher prices for fuel and food, further pushed 53 million people into poverty in addition to almost 155 million in 2008. From 1990 to 2009, the average GHI in the world decreased by nearly one-fifth. Many countries had success in solving the problem of child nutrition; however, the mortality rate of children under 5 and the proportion of undernourished people are still high. From 2011 to 2013, the number of hungry people in the world was estimated at 842 million, down 17 percent compared with the period 1990 to 1992, according to a report released by the Food and Agriculture Organization of the United Nations (FAO) titled “The State of Food Insecurity in the World 2013” . Although poverty in some African countries had been improved in this stage, sub-Saharan Africa still maintained an area with high the highest percentage of hungry people in the world. The consequences and big problems resulting from poverty are terrible in the extreme. The following will illustrate the overall picture under the issues of health, unemployment, education and society and politics ➢ Health issues: According a report by Manos Unidas, a non- government organization (NGO) in Spain , poverty kills more than 30,000 children under age 5 worldwide every day, and 11 million children die each year because of poverty. Currently, 42 million people are living with HIV, 39 million of them in developing countries. The Manos Unidas report also shows that 15 million children globally have been orphaned because of AIDS. Scientists predict that by 2020 a number of African countries will have lost a quarter of their population to this disease. Simultaneously, chronic drought and lack of clean water have not only hindered economic development but also caused disastrous consequences of serious diseases across Africa. In fact, only 58 percent of Africans have access to clean water; as a result, the average life expectancy in Africa is the lowest in the world, just 45 years old (Bui, 2010). ➢ Unemployment issues: According to the United Nations, the youth unemployment rate in Africa is the highest in the world: 25.6 percent in the Middle East and North Africa. Unemployment with growth rates of 10 percent a year is one of the key issues causing poverty in African and negatively affecting programs and development plans. Total African debt amounts to $425 billion (Bui, 2010). In addition, joblessness caused by the global economic downturn pushed more than 140 million people in Asia into extreme poverty in 2009, the International Labor Organization (ILO) warned in a report titled The Fallout in Asia, prepared for the High-Level Regional Forum on Responding to the Economic Crisis in Asia and the Pacific, in Manila from Feb. 18 to 20, 2009 . Surprisingly, this situation also happens in developed countries. About 12.5 million people in the United Kingdom (accounting for 20 percent of the population) are living below the poverty line, and in 2005, 35 million people in the United States could not live without charity. At present, 620 million people in Asia are living on less than $1 per day; half of them are in India and China, two countries whose economies are considered to be growing. ➢ Education issues: Going to school is one of the basic needs of human beings, but poor people cannot achieve it. Globally, 130 million children do not attend school, 55 percent of them girls, and 82 million children have lost their childhoods by marrying too soon (Bui, 2010). Similarly, two-thirds of the 759 million illiterate people in total are women. Specifically, the illiteracy rate in Africa keeps increasing, accounting for about 40 percent of the African population at age 15 and over 50 percent of women at age 25. The number of illiterate people in the six countries with the highest number of illiterate people in the world - China, India, Indonesia, Brazil, Bangladesh and Egypt - reached 510 million, accounting for 70 percent of total global illiteracy. ➢ Social and political issues: Poverty leads to a number of social problems and instability in political systems of countries around the world. Actually, 246 million children are underage labors, including 72 million under age 10. Simultaneously, according to an estimate by the United Nations (UN), about 100 million children worldwide are living on the streets. For years, Africa has suffered a chronic refugee problem, with more than 7 million refugees currently and over 200 million people without homes because of a series of internal conflicts and civil wars. Poverty threatens stability and development; it also directly influences human development. Solving the problems caused by poverty takes a lot of time and resources, but afterward they can focus on developing their societies. Poverty has become a global issue with political significance of particular importance. It is a potential cause of political and social instability, even leading to violence and war not only within a country, but also in the whole world. Poverty and injustice together have raised fierce conflicts in international relations; if these conflicts are not satisfactorily resolved by peaceful means, war will inevitably break out. Obviously, poverty plus lack of understanding lead to disastrous consequences such as population growth, depletion of water resources, energy scarcity, pollution, food shortages and serious diseases (especially HIV/AIDS), which are not easy to control; simultaneously, poverty plus injustice will cause international crimes such as terrorism, drug and human trafficking, and money laundering. Among recognizable four issues above which reflected the serious consequences of poverty, the third ones, education, if being prioritized in intervention over other issues in the fighting against poverty is believed to bring more effectiveness in resolving the problems from the roots. In fact, human being with the possibility of being educated resulted from their distinctive linguistic ability makes them differential from other beings species on the earth (Barrow and Woods 2006, p.22). With education, human can be aware and more critical with their situations, they are aimed with abilities to deal with social problems as well as adversity for a better life; however, inequality in education has stolen opportunity for fighting poverty from unprivileged people (Lipman, 2004). An appropriate education can help increase chances for human to deal with all of the issues related to poverty; simultaneously it can narrow the unexpected side-effect of making poverty worse. A number of philosophies from ancient Greek to contemporary era focus on the aspect of education with their own epistemology, for example, idealism of Plato encouraged students to be truth seekers and pragmatism of Dewey enhanced the individual needs of students (Gutex, 1997). Education, more later on, especially critical pedagogy focuses on developing people independently and critically which is essential for poor people to have ability of being aware of what they are facing and then to have equivalent solutions for their problems. In other words, critical pedagogy helps people emancipate themselves and from that they can contribute to transform the situations or society they live in. In this sense, in his most influential work titled “Pedagogy of the Oppressed” (1972), Paulo Freire carried out his critical pedagogy by building up a community network of peasants- the marginalized and unprivileged party in his context, aiming at awakening their awareness about who they are and their roles in society at that time. To do so, he involved the peasants into a problem-posing education which was different from the traditional model of banking education with the technique of dialogue. Dialogue wasn’t just simply for people to learn about each other; but it was for figuring out the same voice; more importantly, for cooperation to build a social network for changing society. The peasants in such an educational community would be relieved from stressfulness and the feeling of being outsiders when all of them could discuss and exchange ideas with each other about the issues from their “praxis”. Praxis which was derived from what people act and linked to some values in their social lives, was defined by Freire as “reflection and action upon the world in order to transform it” (p.50). Critical pedagogy dialogical approach in Pedagogy of the Oppressed of Freire seems to be one of the helpful ways for solving poverty for its close connection to the nature of equality. It doesn’t require any highly intellectual teachers who lead the process; instead, everything happens naturally and the answers are identified by the emancipation of the learners themselves. It can be said that the effectiveness of this pedagogy for people to escape poverty comes from its direct impact on human critical consciousness; from that, learners would be fully aware of their current situations and self- figure out the appropriate solutions for their own. In addition, equality which was one of the essences making learners in critical pedagogy intellectually emancipate was reflected via the work titled “The Ignorant Schoolmaster” by Jacques Rancière (1991). In this work, the teacher and students seemed to be equal in terms of the knowledge. The explicator- teacher Joseph Jacotot employed the interrogative approach which was discovered to be universal because “he taught what he didn’t know”. Obviously, this teacher taught French to Flemish students while he couldn’t speak his students’ language. The ignorance which was not used in the literal sense but a metaphor showed that learners can absolutely realize their capacity for self-emancipation without the traditional teaching of transmission of knowledge from teachers. Regarding this, Rancière (1991, p.17) stated “that every common person might conceive his human dignity, take the measure of his intellectual capacity, and decide how to use it”. This education is so meaningful for poor people by being able to evoking their courageousness to develop themselves when they always try to stay away from the community due the fact that poverty is the roots of shame, guilt, humiliation and resistance (Novak, 1999). The contribution of critical pedagogy to solving poverty by changing the consciousness of people from their immanence is summarized by Freire’s argument in his “Pedagogy of Indignation” as follows: “It is certain that men and women can change the world for the better, can make it less unjust, but they can do so from starting point of concrete reality they “come upon” in their generation. They cannot do it on the basis of reveries, false dreams, or pure illusion”. (p.31) To sum up, education could be an extremely helpful way of solving poverty regarding the possibilities from the applications of studies in critical pedagogy for educational and social issues. Therefore, among the world issues, poverty could be possibly resolved in accordance with the indigenous people’s understanding of their praxis, their actions, cognitive transformation, and the solutions with emancipation in terms of the following keynotes: First, because the poor are powerless, they usually fall into the states of self-deprecation, shame, guilt and humiliation, as previously mentioned. In other words, they usually build a barrier between themselves and society, or they resist changing their status. Therefore, approaching them is not a simple matter; it requires much time and the contributions of psychologists and sociologists in learning about their aspirations, as well as evoking and nurturing the will and capacities of individuals, then providing people with chances to carry out their own potential for overcoming obstacles in life. Second, poverty happens easily in remote areas not endowed with favorable conditions for development. People there haven’t had a lot of access to modern civilization; nor do they earn a lot of money for a better life. Low literacy, together with the lack of healthy forms of entertainment and despair about life without exit, easily lead people into drug addiction, gambling and alcoholism. In other words, the vicious circle of poverty and powerlessness usually leads the poor to a dead end. Above all, they are lonely and need to be listened to, shared with and led to escape from their states. Community meetings for exchanging ideas, communicating and immediate intervening, along with appropriate forms of entertainment, should be held frequently to meet the expectations of the poor, direct them to appropriate jobs and, step by step, change their favorite habits of entertainment. Last but not least, poor people should be encouraged to participate in social forums where they can both raise their voices about their situations and make valuable suggestions for dealing with their poverty. Children from poor families should be completely exempted from school fees to encourage them to go to school, and curriculum should also focus on raising community awareness of poverty issues through extracurricular and volunteer activities, such as meeting and talking with the community, helping poor people with odd jobs, or simply spending time listening to them. Not a matter of any individual country, poverty has become a major problem, a threat to the survival, stability and development of the world and humanity. Globalization has become a bridge linking countries; for that reason, instability in any country can directly and deeply affect the stability of others. The international community has been joining hands to solve poverty; many anti-poverty organizations, including FAO (Food and Agriculture Organization), BecA (the Biosciences eastern and central Africa), UN-REDD (the United Nations Programme on Reducing Emissions from Deforestation and Forest Degradation), BRAC (Building Resources Across Communities), UNDP (United Nations Development Programme), WHO (World Health Organization) and Manos Unidas, operate both regionally and internationally, making some achievements by reducing the number of hungry people, estimated 842 million in the period 1990 to 1992, by 17 percent in 2011- to 2013 . The diverse methods used to deal with poverty have invested billions of dollars in education, health and healing. The Millennium Development Goals set by UNDP put forward eight solutions for addressing issues related to poverty holistically: 1) Eradicate extreme poverty and hunger. 2) Achieve universal primary education. 3) Promote gender equality and empower women. 4) Reduce child mortality. 5) Improve maternal health. 6) Combat HIV/AIDS, malaria and other diseases. 7) Ensure environmental sustainability. 8) Develop a global partnership for development. Although all of the mentioned solutions carried out directly by countries and organizations not only focus on the roots of poverty but break its circle, it is recognized that the solutions do not emphasize the role of the poor themselves which a critical pedagogy does. More than anyone, the poor should have a sense of their poverty so that they can become responsible for their own fate and actively fight poverty instead of waiting for help. It is not different from the cores of critical theory in solving educational and political issues that the poor should be aware and conscious about their situation and reflected context. It is required a critical transformation from their own praxis which would allow them to go through a process of learning, sharing, solving problems, and leading to social movements. This is similar to the method of giving poor people fish hooks rather than giving them fish. The government and people of any country understand better than anyone else clearly the strengths and characteristics of their homelands. It follows that they can efficiently contribute to causing poverty, preventing the return of poverty, and solving consequences of the poverty in their countries by many ways, especially a critical pedagogy; and indirectly narrow the scale of poverty in the world. In a word, the wars against poverty take time, money, energy and human resources, and they are absolutely not simple to end. Again, the poor and the challenged should be educated to be fully aware of their situation to that they can overcome poverty themselves. They need to be respected and receive sharing from the community. All forms of discrimination should be condemned and excluded from human society. When whole communities join hands in solving this universal problem, the endless circle of poverty can be addressed definitely someday. More importantly, every country should be responsible for finding appropriate ways to overcome poverty before receiving supports from other countries as well as the poor self-conscious responsibilities about themselves before receiving supports from the others, but the methods leading them to emancipation for their own transformation and later the social change.

The life path, scientific-pedagogical and public activity of Volodymyr Sokurenko – a prominent Ukrainian jurist, doctor of law, professor, talented teacher of the Lviv Law School of Franko University are analyzed. It is found out that after graduating from a seven-year school in Zaporizhia, V. Sokurenko entered the Zaporizhia Aviation Technical School, where he studied two courses until 1937. 1/10/1937 he was enrolled as a cadet of the 2nd school of aircraft technicians named after All-Union Lenin Komsomol. In 1938, this school was renamed the Volga Military Aviation School, which he graduated on September 4, 1939 with the military rank of military technician of the 2nd category. As a junior aircraft technician, V. Sokurenko was sent to the military unit no. 8690 in Baku, and later to Maradnyany for further military service in the USSR Air Force. From September 4, 1939 to March 16, 1940, he was a junior aircraft technician of the 50th Fighter Regiment, 60th Air Brigade of the ZAK VO in Baku. The certificate issued by the Railway District Commissariat of Lviv on January 4, 1954 no. 3132 states that V. Sokurenko actually served in the staff of the Soviet Army from October 1937 to May 1946. The same certificate states that from 10/12/1941 to 20/09/1942 and from 12/07/1943 to 08/03/1945, he took part in the Soviet-German war, in particular in the second fighter aviation corps of the Reserve of the Supreme Command of the Soviet Army. In 1943 he joined the CPSU. He was awarded the Order of the Patriotic War of the 1st degree and the Order of the Red Star (1943) as well as 9 medals «For Merit in Battle» during the Soviet-German war. With the start of the Soviet-German war, the Sokurenko family, like many other families, was evacuated to the town of Kamensk-Uralsky in the Sverdlovsk region, where their father worked at a metallurgical plant. After the war, the Sokurenko family moved to Lviv. In 1946, V. Sokurenko entered the Faculty of Law of the Ivan Franko Lviv State University, graduating with honors in 1950, and entered the graduate school of the Lviv State University at the Department of Theory and History of State and Law. V. Sokurenko successfully passed the candidate examinations and on December 25, 1953 in Moscow at the Institute of Law of the USSR he defended his thesis on the topic: «Socialist legal consciousness and its relationship with Soviet law». The supervisor of V. Sokurenko's candidate's thesis was N. Karieva. The Higher Attestation Commission of the Ministry of Culture of the USSR, by its decision of March 31, 1954, awarded V. Sokurenko the degree of Candidate of Law. In addition, it is necessary to explain the place of defense of the candidate's thesis by V. Sokurenko. As it is known, the Institute of State and Law of the USSR has its history since 1925, when, in accordance with the resolution of the Presidium of the Central Executive Committee of March 25, 1925, the Institute of Soviet Construction was established at the Communist Academy. In 1936, the Institute became part of the USSR Academy of Sciences, and in 1938 it was reorganized into the Institute of Law of the USSR Academy of Sciences. In 1941–1943 it was evacuated to Tashkent. In 1960-1991 it was called the Institute of State and Law of the USSR Academy of Sciences. In Ukraine, there is the Institute of State and Law named after V. Koretsky of the NAS of Ukraine – a leading research institution in Ukraine of legal profile, founded in 1949. It is noted that, as a graduate student, V. Sokurenko read a course on the history of political doctrines, conducted special seminars on the theory of state and law. After graduating from graduate school and defending his thesis, from October 1, 1953 he was enrolled as a senior lecturer and then associate professor at the Department of Theory and History of State and Law at the Faculty of Law of the Lviv State University named after Ivan Franko. By the decision of the Higher Attestation Commission of the Ministry of Higher Education of the USSR of December 18, 1957, V. Sokurenko was awarded the academic title of associate professor of the «Department of Theory and History of State and Law». V. Sokurenko took an active part in public life. During 1947-1951 he was a member of the party bureau of the party organization of LSU, worked as a chairman of the trade union committee of the university, from 1955 to 1957 he was a secretary of the party committee of the university. He delivered lectures for the population of Lviv region. Particularly, he lectured in Turka, Chervonohrad, and Yavoriv. He made reports to the party leaders, Soviet workers as well as business leaders. He led a philosophical seminar at the Faculty of Law. He was a deputy of the Lviv City Council of People's Deputies in 1955-1957 and 1975-1978. In December 1967, he defended his doctoral thesis on the topic: «Development of progressive political thought in Ukraine (until the early twentieth century)». The defense of the doctoral thesis was approved by the Higher Attestation Commission on June 14, 1968. During 1960-1990 he headed the Department of Theory and History of State and Law; in 1962-68 and 1972-77 he was the dean of the Law Faculty of the Ivan Franko Lviv State University. In connection with the criticism of the published literature, on September 10, 1977, V. Sokurenko wrote a statement requesting his dismissal from the post of Dean of the Faculty of Law due to deteriorating health. During 1955-1965 he was on research trips to Poland, Czechoslovakia, Romania, Austria, and Bulgaria. From August 1966 to March 1967, in particular, he spent seven months in the United States, England and Canada as a UN Fellow in the Department of Human Rights. From April to May 1968, he was a member of the government delegation to the International Conference on Human Rights in Iran for one month. He spoke, in addition to Ukrainian, English, Polish and Russian. V. Sokurenko played an important role in initiating the study of an important discipline at the Faculty of Law of the Lviv University – History of Political and Legal Studies, which has been studying the history of the emergence and development of theoretical knowledge about politics, state, law, ie the process of cognition by people of the phenomena of politics, state and law at different stages of history in different nations, from early statehood and modernity. Professor V. Sokurenko actively researched the problems of the theory of state and law, the history of Ukrainian legal and political thought. He was one of the first legal scholars in the USSR to begin research on the basics of legal deontology. V. Sokurenko conducted extensive research on the development of basic requirements for the professional and legal responsibilities of a lawyer, similar to the requirements for a doctor. In further research, the scholar analyzed the legal responsibilities, prospects for the development of the basics of professional deontology. In addition, he considered medical deontology from the standpoint of a lawyer, law and morality, focusing on internal (spiritual) processes, calling them «the spirit of law.» The main direction of V. Sokurenko's research was the problems of the theory of state and law, the history of legal and political studies. The main scientific works of professor V. Sokurenko include: «The main directions in the development of progressive state and legal thought in Ukraine: 16th – 19th centuries» (1958) (Russian), «Democratic doctrines about the state and law in Ukraine in the second half of the 19th century (M. Drahomanov, S. Podolynskyi, A. Terletskyi)» (1966), «Law. Freedom. Equality» (1981, co-authored) (in Russian), «State and legal views of Ivan Franko» (1966), «Socio-political views of Taras Shevchenko (to the 170th anniversary of his birth)» (1984); «Political and legal views of Ivan Franko (to the 130th anniversary of his birth)» (1986) (in Russian) and others. V. Sokurenko died on November 22, 1994 and was buried in Holoskivskyi Cemetery in Lviv. Volodymyr Sokurenko left a bright memory in the hearts of a wide range of scholars, colleagues and grateful students. The 100th anniversary of the Scholar is a splendid opportunity to once again draw attention to the rich scientific heritage of the lawyer, which is an integral part of the golden fund of Ukrainian legal science and education. It needs to be studied, taken into account and further developed.

A review of: Chatman, E. A. (1991). Life in a small world: Applicability of gratification theory to information-seeking behavior. Journal of the American Society for Information Science, 42(6), 438-449. Objective – Apply gratification theory to the information-seeking behaviours and use of information by a lower working class population. Design – An ethnographic study framed by social stratification literature was utilized to explore, describe and interpret the everyday information needs, information-seeking behaviours and views of information held by lower working class individuals. Setting – A major university in the southeast United States, specifically the physical plant facilities including classrooms, bathrooms, janitorial closets, and front steps. Subjects – The participants were 52 lower working class janitorial staff at a major university. The majority of subjects were single black women in their late 30s. The women had children and were the heads of their households. The women had not completed high school and earned minimum wage; they had been at their jobs for an average of seven years. The workers’ supervisors, and others at the physical plant, were also contacted as part of the study. Methods – Ethnographic data was collected over a two-year period, 1984-86, through participation in the setting and interviews. A 28-item interview guide was used to identify participants’ job-search strategies, use of mass media, television viewing behaviours, and acceptance of information from individuals and believable sources of information. Main results – Chatman confirmed the usefulness of gratification theory as a conceptual framework to identify what defines information problems, motivations, and information seeking behaviours for an impoverished population. The results support the findings of social stratification research on the parallel between impoverished individuals’ social life and their orientation toward gratification. A focus on local present reality due to pressing economic and psychological problems orients lower working class individuals toward immediate gratification. Thus, information sources of value to the participants were those readily accessible and easy to use in the moment of need. The six theoretical propositions of gratification theory Chatman identified through her literature review were applied and confirmed in her analysis of the information behaviours of janitorial workers: 1. Life in a Small World. Lower working class individuals have a local worldview and therefore have limited exposure to job opportunities compared to other populations. The majority of Chatman’s subjects found out about their current job through friends and family employed at the university (51%), or neighbours employed there (11%). 2. Lower Expectations and the Belief in Luck. Individuals of the population have lower expectations of their success and therefore do not actively pursue new opportunities; success is seen as a result of luck. Janitorial workers in the study felt they were lucky to have found their jobs and that their chances of finding a better position were slight and based on “knowing someone” (p. 444). 3. First-Level Lifestyle. Members of the population rely on information from members of their social circles. Study participants sought everyday information from family, friends, neighbours, local newspapers, and television. Information was considered reliable in their view if it aligned with their personal experience, was presented by multiple people, or if the person sharing the information was perceived as trustworthy. 4. Limited-Time Horizon. Lower working class populations experience a time immediacy and limitation different from those of the middle and upper classes. Study participants imagined their future job positions and lifestyles as similar to the ones they currently held, due to perceptions that opportunities were not open to them or worth the effort to pursue. Some exceptions were the possibility of pursuing higher education and having more leisure time in the future. 5. An “Insider” Worldview. The worldview of an insider is focused “on the practical dimensions of life” (p. 445); information relevant to lower working class individuals is that which “solve[s] problematic situations” (p. 441). Study participants’ social conversations revolved around events that reinforced their mental models. Respondents relied on themselves and distrusted those outside their social circles. 6. Use of the Mass Media. Mass media is perceived as a vehicle for passing time, escape, and entertainment, as well as a reflection of lived realities for the population. Respondents indicated that they watched television to pass time, and, secondarily, for practical purposes (e.g., learning how to be safe). Conclusion – Gratification theory provides a useful framework for library and information professionals to identify how populations define information problems and reliable sources, and their information seeking behaviours and motivations. Chatman’s analysis indicates that the everyday problems faced by the lower working class are not, and will not be, met by traditional sources that information professionals assume to be of value for the population. Based on these research results, Chatman calls on information professionals to critically evaluate and broaden their understanding of how problems are defined and addressed by the specific populations they seek to serve – to consider the relationships between the pressing realities of their service populations and everyday information that addresses those realities. This understanding will enable information professionals to determine if, how, and by what means, they should develop and package information to meet the needs of their service populations and communities.

Advanced Practice Nursing (APN) emerged as a response to the need for professionals capable of giving care to patients, thereby improving the quality of healthcare; the results obtained by implementing APNs in healthcare teams confirm that APNs can be implemented in the healthcare of patients of all ages and with varied health situations (1). Levels of development in APN are very diverse in distinct countries, in the legal aspect as well as in the roles that a nurse with this level of training can fulfill. The International Council of Nurses (ICN) counts around seventy countries as being preoccupied with introducing clear function for APNs (20); nonetheless, literature describes the main progress in this sense occurring in Canada, Australia, Ireland, Finland, the United Kingdom, and the United States, although in the last ten years significant advances have been identifies in Belgium, Germany, Switzerland, Thailand, Singapore, Korea, and Africa (3, 4). In Latin-American, progress in this initiative is embryonic: the role that a APN can fulfill has not been sufficiently disseminated and the implementation of this strategy has been limited by healthcare policies in many countries or by the opposition to APNs by professionals in other areas who are reacting to misinformation or to fear of usurpation of certain functions by APNs. However, in primary care, APNs have been incorporated into healthcare teams, and research shows positive results for the expansion of coverage and reduction of healthcare costs, in both rural areas and urban centers (1, 5). Thanks to these advances, in 2000 the ICN supported the creation of the International Nurse Practitioner/Advanced Practice Nursing Network (INP/APNN) with the objective of favoring dialogue, advancing the installation of APNs in the countries, facilitating the interchange of knowledge, determining the limits in the expansion of the role of nurses, and defining the guidelines for the formation of human resources at this level. Likewise, the World Health Organization and the Pan-American Health Organization (PAHO) have worked with universities and nursing associations in Latin America and the Caribbean to, through context analyses, propose implementation of APNs (5). During August 2018, the 10th Conference of the International Nursing Council convened in Rotterdam with the goal of exploring the role of APNs in the transformation of healthcare (6). With the participation of more than fifty countries, the council established a global panorama of the situation and of the challenges nursing faces as an active participant and agent for achieving universal health coverage. An important conclusion drawn from the event is the recognition given by all participating countries to APNs for allowing significant advancement of strategies for primary healthcare and the achievement of goals related with universal health coverage and sustainable development: the guarantee of a healthy life and the promotion of wellness for everyone at every age (4, 5). These propositions imply a process and the need for countries to work towards the expansion of nursing roles, which requires the promotion of a collective project that unites different sectors involved in the formation of human talent, on one hand, that the offering of health services on the other. Likewise, administrators of education and health policy along with associations involved in the nursing discipline need to contribute to the analyses of strategies for implementing a sustainable and efficient health system that allows universal access to health (1, 4, 7). In this context, APNs are understood to have undergone master or doctorate level training that develops scientific knowledge, clinical expertise, leadership, political formation, communicational capacity, and education for the patient, family, and community groups. Therefore, the professional is enabled to take ethical decisions, work autonomously, interact in intra- and interdisciplinary groups, and understand that ANP’s work will be determined by the unique environment, healthcare structure, and legislation of different countries. In accord with Morán-Peña (8), the International Nursing Council states that APNs are characterized by an autonomous practice that allows the implementation of tools like: valuation, diagnostic reasoning, decision making for the handling of cases, plan development, implementation and evaluation of programs as part of consultation services, and being the first point of contact in the healthcare system. This implies that an ANP will have competencies to participate in the elaboration of public policy as well as on teams dedicated to care for individuals, families, groups, and communities in disease prevention, health promotion, treatment, recuperation, and palliative care (7, 9, 10). Consequently, working on the implementation of the EPA can possibly lead to transformation of healthcare systems in the clinical area, improvement in the access to primary healthcare, and in the design and development of investigation projects whose results can be applied in practice; in short, it would affect the quality and effectiveness of healthcare at different levels and allow the urgent and much needed evolution of healthcare systems (11). With this perspective, the fundamental question is whether sufficient political interest exist for the development of APN’s roles, the definition of APN’s limits, the adaption of the existing structure, the establishment of guidelines for educational programs, and the application of expert knowledge, among other aspects, in benefit of health coverage, healthcare quality, and the establishment of a sustainable healthcare system.

THE SCIENCE OF CHILDREN'S RELIGIOUS AND SPIRITUAL DEVELOPMENT by Annette Mahoney. Cambridge, UK: Cambridge University Press, 2021. 86 pages. Paperback; $20.00. ISBN: 9781108812771. *The Science of Children's Religious and Spiritual Development by Annette Mahoney is a recent addition to the Cambridge Elements Child Development series. Between an introduction and conclusion, Mahoney has five sections to guide her summary. Overall, her approach is well conceived, approachable, and highly informative. Having taught undergraduate courses on child development for fifteen years at Christian liberal arts institutions, I found Mahoney's volume to be a thorough yet concise resource on religious and spiritual development from which I can draw resources as well as enrich discourse with engaged students. *In her introduction, Mahoney quickly sets the stage for the importance of religious and spiritual development in children. She notes how parents around the world desire to raise "good" (prosocial) children. Religion is frequently cited as influencing their parenting practices. The emphasis in research is on adolescence and adulthood for the specific study of religious and spiritual development, leaving a large gap when it comes to how these issues pertain to children's development. *Mahoney draws from Harold Koenig, Michael McCullough, and David Larson to define Religious/Religion (R) and Spiritual/Spirituality (S).1 She acknowledges that this is not an agreed upon straightforward process, and that often R and S are not substantively different in the social science literature. With children, perceptions of God are commonly examined, though this only begins to scratch the surface of what's beneath their RS development. *After a quick historical look at RS, Mahoney offers a brief overview of Fowler's faith development theory, citing his 1981 book, Stages of Faith: The Psychology of Human Development and the Quest for Meaning.2 She concludes that his "assumptions perhaps helped to dampen interest by mainstream developmental scientists in investigating children's RS" (p. 6). Here I wanted to better understand her conclusion and felt that more explanation would be beneficial for her argument. *Mahoney frequently reminds the reader that most of the research, both historically and currently, occurs in Western societies. There have been a handful of measures developed, which she presents in a table with the name, authors, definitions of R and S, subscales, and example items (pp. 11-19). This is followed by a helpful narrative of each measure and a comparison of four models that emerge. The reader quickly observes the murky state of measuring RS. Prosocial behaviors and positive psychology concepts are intertwined with RS, and Mahoney calls for clearer communication and increased transparency. *Due to the lack of studies with children, Mahoney reviews adolescents' RS and related psychosocial adjustment. RS appears to influence the views and choices of adolescents in areas such as risk taking, self-esteem, and depression. Mahoney presents a well-articulated description of the "muddled middle" (p. 28). Adolescents with either a high or a low state of RS are best adjusted. It appears that RS ambivalence places adolescents at greatest risk. Factors such as cognitive dissonance and moral inconsistencies appear to be at play. *The few studies on children's psychosocial adjustment and RS seem to suggest that children with significant life stressors (e.g., family conflict) may benefit from RS. The reciprocal nature of the parent-child relationship has relevance, as greater parental RS shows both positive and negative outcomes. On the upside, parents with higher levels of RS are more efficacious and warm, which in turn increases children's social and academic functioning. On the downside, greater parental RS predicts greater parental behavioral control and less autonomy in children. This in turn can be linked to more emotional problems in children, both internalizing (e.g., depression, anxiety) and externalizing (e.g., acting out, delinquency). It is important to note that these levels of problems are typically subclinical. *Mahoney also reviews the relationship between corporal punishment and parental RS. The research is clear on physical punishment (e.g., spanking) being ineffective, resulting in greater negative outcomes. The findings are mixed with regard to RS. Parents with higher RS, particularly those with lower education, implement harsher parenting strategies; however, greater attendance of religious services has been linked to less use of such strategies. Furthermore, higher religious attendance has been found to be a protective factor when it comes to child maltreatment (i.e., abuse and neglect). *When parents are asked specifically about their parenting goals, it becomes evident that not many place fostering a high level of RS to their children at the top of the list. Goals that surpass it include nurturing high self-esteem and interpersonal skills, contributing to the larger society, carrying on family and cultural traditions, and providing the necessary education for a good future. Again, these are primarily Western reports and Mahoney reminds the reader that other countries' perspectives are needed. Like non-Western studies, studies of nontraditional parenting units, such as single parents, same-sex parents, and economically disadvantaged parents, are underrepresented. Furthermore, the type of theistic schema provides another area of diversity that is lacking, as children can be reared in polytheistic, nontheistic, atheist, or agnostic environments. *Mahoney's final section looks at social and cognitive-developmental research. Concepts such as theory of mind and attachment enter the scene. The primary area that has been studied in children's RS development is their concept of God. Preliminary findings suggest that children's perceptions of God mirror how they are being parented (e.g., punishing parents → punishing God, nurturing parents → nurturing God, powerful parents → powerful God, etc.). Examining children's prayers also sheds some light on RS development, though again findings are mixed and limited. There is more work to be done. *Mahoney calls on social scientists to take the lead in providing guidance to parents to uphold the United Nations' 1989 Convention on the Rights of the Child Article 14, 1-2 that states: "States Parties shall respect the right of the child to freedom of thought, conscience and religion; States Parties shall respect the rights and duties of the parents and, when applicable, legal guardians, to provide direction to the child in the exercise of his or her right in a manner consistent with the evolving capacities of the child."3 More intentional investigation of children around the globe can help parents directly but also inform policy makers. Mahoney states that "one central observation is that this literature is in its infancy stage" (p. 62). *Overall, Mahoney's review of children's RS development in this volume is thorough yet concise, troubling yet hopeful, vague yet nuanced. She concludes with six key areas and related findings to recap how the scientific study of children's RS development can be improved in the years to come. Thankfully, RS has begun to attract significant attention in the field, including from the Templeton Foundation's attempt to build a more global community of social scientists.4 After reading this book, I feel much better equipped to elucidate what is known and what is yet to be discovered. This is important, not only in academic communities of colleagues and students, but also in the broader communities of church and society and in our personal communities. *Notes *1Harold G. Koenig, Michael E. McCullough, and David B. Larson, Handbook of Religion and Health (New York: Oxford University Press, 2001). *2James W. Fowler, Stages of Faith: The Psychology of Human Development and the Quest for Meaning (New York: HarperSanFrancisco, 1981). *3United Nations Human Rights, "Convention on the Rights of the Child," Treaty Series 1577, no. 3 (1989): 1-23, https://www.ohchr.org/en/professionalinterest/pages/crc.aspx. *4J. D. Warren, "$10 Million Grant Will Study Children's Religious Views," University of California, Riverside, February 19, 2020, https://news.ucr.edu/articles/2020/02/19/10-million-grant-will-study-childrens-religious-views. *Reviewed by Erin Mueller, Professor of Psychology, Northwestern College, Orange City, IA 51041.

Education in Oceania continues to reflect the embedded implicit and explicit colonial practices and processes from the past. This paper conceptualises a cultural approach to education and leadership appropriate and relevant to the Republic of the Marshall Islands. As elementary school leaders, we highlight Kanne Lobal, a traditional Marshallese navigation practice based on indigenous language, values and practices. We conceptualise and develop Kanne Lobal in this paper as a framework for understanding the usefulness of our indigenous knowledge in leadership and educational practices within formal education. Through bwebwenato, a method of talk story, our key learnings and reflexivities were captured. We argue that realising the value of Marshallese indigenous knowledge and practices for school leaders requires purposeful training of the ways in which our knowledge can be made useful in our professional educational responsibilities. Drawing from our Marshallese knowledge is an intentional effort to inspire, empower and express what education and leadership partnership means for Marshallese people, as articulated by Marshallese themselves. Introduction As noted in the call for papers within the Waikato Journal of Education (WJE) for this special issue, bodies of knowledge and histories in Oceania have long sustained generations across geographic boundaries to ensure cultural survival. For Marshallese people, we cannot really know ourselves “until we know how we came to be where we are today” (Walsh, Heine, Bigler & Stege, 2012). Jitdam Kapeel is a popular Marshallese concept and ideal associated with inquiring into relationships within the family and community. In a similar way, the practice of relating is about connecting the present and future to the past. Education and leadership partnerships are linked and we look back to the past, our history, to make sense and feel inspired to transform practices that will benefit our people. In this paper and in light of our next generation, we reconnect with our navigation stories to inspire and empower education and leadership. Kanne lobal is part of our navigation stories, a conceptual framework centred on cultural practices, values, and concepts that embrace collective partnerships. Our link to this talanoa vā with others in the special issue is to attempt to make sense of connections given the global COVID-19 context by providing a Marshallese approach to address the physical and relational “distance” between education and leadership partnerships in Oceania. Like the majority of developing small island nations in Oceania, the Republic of the Marshall Islands (RMI) has had its share of educational challenges through colonial legacies of the past which continues to drive education systems in the region (Heine, 2002). The historical administration and education in the RMI is one of colonisation. Successive administrations by the Spanish, German, Japanese, and now the US, has resulted in education and learning that privileges western knowledge and forms of learning. This paper foregrounds understandings of education and learning as told by the voices of elementary school leaders from the RMI. The move to re-think education and leadership from Marshallese perspectives is an act of shifting the focus of bwebwenato or conversations that centres on Marshallese language and worldviews. The concept of jelalokjen was conceptualised as traditional education framed mainly within the community context. In the past, jelalokjen was practiced and transmitted to the younger generation for cultural continuity. During the arrival of colonial administrations into the RMI, jelalokjen was likened to the western notions of education and schooling (Kupferman, 2004). Today, the primary function of jelalokjen, as traditional and formal education, it is for “survival in a hostile [and challenging] environment” (Kupferman, 2004, p. 43). Because western approaches to learning in the RMI have not always resulted in positive outcomes for those engaged within the education system, as school leaders who value our cultural knowledge and practices, and aspire to maintain our language with the next generation, we turn to Kanne Lobal, a practice embedded in our navigation stories, collective aspirations, and leadership. The significance in the development of Kanne Lobal, as an appropriate framework for education and leadership, resulted in us coming together and working together. Not only were we able to share our leadership concerns, however, the engagement strengthened our connections with each other as school leaders, our communities, and the Public Schooling System (PSS). Prior to that, many of us were in competition for resources. Educational Leadership: IQBE and GCSL Leadership is a valued practice in the RMI. Before the IQBE programme started in 2018, the majority of the school leaders on the main island of Majuro had not engaged in collaborative partnerships with each other before. Our main educational purpose was to achieve accreditation from the Western Association of Schools and Colleges (WASC), an accreditation commission for schools in the United States. The WASC accreditation dictated our work and relationships and many school leaders on Majuro felt the pressure of competition against each other. We, the authors in this paper, share our collective bwebwenato, highlighting our school leadership experiences and how we gained strength from our own ancestral knowledge to empower “us”, to collaborate with each other, our teachers, communities, as well as with PSS; a collaborative partnership we had not realised in the past. The paucity of literature that captures Kajin Majol (Marshallese language) and education in general in the RMI is what we intend to fill by sharing our reflections and experiences. To move our educational practices forward we highlight Kanne Lobal, a cultural approach that focuses on our strengths, collective social responsibilities and wellbeing. For a long time, there was no formal training in place for elementary school leaders. School principals and vice principals were appointed primarily on their academic merit through having an undergraduate qualification. As part of the first cohort of fifteen school leaders, we engaged in the professional training programme, the Graduate Certificate in School Leadership (GCSL), refitted to our context after its initial development in the Solomon Islands. GCSL was coordinated by the Institute of Education (IOE) at the University of the South Pacific (USP). GCSL was seen as a relevant and appropriate training programme for school leaders in the RMI as part of an Asia Development Bank (ADB) funded programme which aimed at “Improving Quality Basic Education” (IQBE) in parts of the northern Pacific. GCSL was managed on Majuro, RMI’s main island, by the director at the time Dr Irene Taafaki, coordinator Yolanda McKay, and administrators at the University of the South Pacific’s (USP) RMI campus. Through the provision of GCSL, as school leaders we were encouraged to re-think and draw-from our own cultural repository and connect to our ancestral knowledge that have always provided strength for us. This kind of thinking and practice was encouraged by our educational leaders (Heine, 2002). We argue that a culturally-affirming and culturally-contextual framework that reflects the lived experiences of Marshallese people is much needed and enables the disruption of inherent colonial processes left behind by Western and Eastern administrations which have influenced our education system in the RMI (Heine, 2002). Kanne Lobal, an approach utilising a traditional navigation has warranted its need to provide solutions for today’s educational challenges for us in the RMI. Education in the Pacific Education in the Pacific cannot be understood without contextualising it in its history and culture. It is the same for us in the RMI (Heine, 2002; Walsh et al., 2012). The RMI is located in the Pacific Ocean and is part of Micronesia. It was named after a British captain, John Marshall in the 1700s. The atolls in the RMI were explored by the Spanish in the 16th century. Germany unsuccessfully attempted to colonize the islands in 1885. Japan took control in 1914, but after several battles during World War II, the US seized the RMI from them. In 1947, the United Nations made the island group, along with the Mariana and Caroline archipelagos, a U.S. trust territory (Walsh et al, 2012). Education in the RMI reflects the colonial administrations of Germany, Japan, and now the US. Before the turn of the century, formal education in the Pacific reflected western values, practices, and standards. Prior to that, education was informal and not binded to formal learning institutions (Thaman, 1997) and oral traditions was used as the medium for transmitting learning about customs and practices living with parents, grandparents, great grandparents. As alluded to by Jiba B. Kabua (2004), any “discussion about education is necessarily a discussion of culture, and any policy on education is also a policy of culture” (p. 181). It is impossible to promote one without the other, and it is not logical to understand one without the other. Re-thinking how education should look like, the pedagogical strategies that are relevant in our classrooms, the ways to engage with our parents and communities - such re-thinking sits within our cultural approaches and frameworks. Our collective attempts to provide a cultural framework that is relevant and appropriate for education in our context, sits within the political endeavour to decolonize. This means that what we are providing will not only be useful, but it can be used as a tool to question and identify whether things in place restrict and prevent our culture or whether they promote and foreground cultural ideas and concepts, a significant discussion of culture linked to education (Kabua, 2004). Donor funded development aid programmes were provided to support the challenges within education systems. Concerned with the persistent low educational outcomes of Pacific students, despite the prevalence of aid programmes in the region, in 2000 Pacific educators and leaders with support from New Zealand Aid (NZ Aid) decided to intervene (Heine, 2002; Taufe’ulungaki, 2014). In April 2001, a group of Pacific educators and leaders across the region were invited to a colloquium funded by the New Zealand Overseas Development Agency held in Suva Fiji at the University of the South Pacific. The main purpose of the colloquium was to enable “Pacific educators to re-think the values, assumptions and beliefs underlying [formal] schooling in Oceania” (Benson, 2002). Leadership, in general, is a valued practice in the RMI (Heine, 2002). Despite education leadership being identified as a significant factor in school improvement (Sanga & Chu, 2009), the limited formal training opportunities of school principals in the region was a persistent concern. As part of an Asia Development Bank (ADB) funded project, the Improve Quality Basic Education (IQBE) intervention was developed and implemented in the RMI in 2017. Mentoring is a process associated with the continuity and sustainability of leadership knowledge and practices (Sanga & Chu, 2009). It is a key aspect of building capacity and capabilities within human resources in education (ibid). Indigenous knowledges and education research According to Hilda Heine, the relationship between education and leadership is about understanding Marshallese history and culture (cited in Walsh et al., 2012). It is about sharing indigenous knowledge and histories that “details for future generations a story of survival and resilience and the pride we possess as a people” (Heine, cited in Walsh et al., 2012, p. v). This paper is fuelled by postcolonial aspirations yet is grounded in Pacific indigenous research. This means that our intentions are driven by postcolonial pursuits and discourses linked to challenging the colonial systems and schooling in the Pacific region that privileges western knowledge and learning and marginalises the education practices and processes of local people (Thiong’o, 1986). A point of difference and orientation from postcolonialism is a desire to foreground indigenous Pacific language, specifically Majin Majol, through Marshallese concepts. Our collective bwebwenato and conversation honours and values kautiej (respect), jouj eo mour eo (reciprocity), and jouj (kindness) (Taafaki & Fowler, 2019). Pacific leaders developed the Rethinking Pacific Education Initiative for and by Pacific People (RPEIPP) in 2002 to take control of the ways in which education research was conducted by donor funded organisations (Taufe’ulungaki, 2014). Our former president, Dr Hilda Heine was part of the group of leaders who sought to counter the ways in which our educational and leadership stories were controlled and told by non-Marshallese (Heine, 2002). As a former minister of education in the RMI, Hilda Heine continues to inspire and encourage the next generation of educators, school leaders, and researchers to re-think and de-construct the way learning and education is conceptualised for Marshallese people. The conceptualisation of Kanne Lobal acknowledges its origin, grounded in Marshallese navigation knowledge and practice. Our decision to unpack and deconstruct Kanne Lobal within the context of formal education and leadership responds to the need to not only draw from indigenous Marshallese ideas and practice but to consider that the next generation will continue to be educated using western processes and initiatives particularly from the US where we get a lot of our funding from. According to indigenous researchers Dawn Bessarab and Bridget Ng’andu (2010), doing research that considers “culturally appropriate processes to engage with indigenous groups and individuals is particularly pertinent in today’s research environment” (p. 37). Pacific indigenous educators and researchers have turned to their own ancestral knowledge and practices for inspiration and empowerment. Within western research contexts, the often stringent ideals and processes are not always encouraging of indigenous methods and practices. However, many were able to ground and articulate their use of indigenous methods as being relevant and appropriate to capturing the realities of their communities (Nabobo-Baba, 2008; Sualii-Sauni & Fulu-Aiolupotea, 2014; Thaman, 1997). At the same time, utilising Pacific indigenous methods and approaches enabled research engagement with their communities that honoured and respected them and their communities. For example, Tongan, Samoan, and Fijian researchers used the talanoa method as a way to capture the stories, lived realities, and worldviews of their communities within education in the diaspora (Fa’avae, Jones, & Manu’atu, 2016; Nabobo-Baba, 2008; Sualii-Sauni & Aiolupotea, 2014; Vaioleti, 2005). Tok stori was used by Solomon Islander educators and school leaders to highlight the unique circles of conversational practice and storytelling that leads to more positive engagement with their community members, capturing rich and meaningful narratives as a result (Sanga & Houma, 2004). The Indigenous Aborigine in Australia utilise yarning as a “relaxed discussion through which both the researcher and participant journey together visiting places and topics of interest relevant” (Bessarab & Ng’andu, 2010, p. 38). Despite the diverse forms of discussions and storytelling by indigenous peoples, of significance are the cultural protocols, ethics, and language for conducting and guiding the engagement (Bessarab & Ng’andu, 2010; Nabobo-Baba, 2008; Sualii-Sauni & Aiolupotea, 2014). Through the ethics, values, protocols, and language, these are what makes indigenous methods or frameworks unique compared to western methods like in-depth interviews or semi-structured interviews. This is why it is important for us as Marshallese educators to frame, ground, and articulate how our own methods and frameworks of learning could be realised in western education (Heine, 2002; Jetnil-Kijiner, 2014). In this paper, we utilise bwebwenato as an appropriate method linked to “talk story”, capturing our collective stories and experiences during GCSL and how we sought to build partnerships and collaboration with each other, our communities, and the PSS. Bwebwenato and drawing from Kajin Majel Legends and stories that reflect Marshallese society and its cultural values have survived through our oral traditions. The practice of weaving also holds knowledge about our “valuable and earliest sources of knowledge” (Taafaki & Fowler, 2019, p. 2). The skilful navigation of Marshallese wayfarers on the walap (large canoes) in the ocean is testament of their leadership and the value they place on ensuring the survival and continuity of Marshallese people (Taafaki & Fowler, 2019; Walsh et al., 2012). During her graduate study in 2014, Kathy Jetnil-Kijiner conceptualised bwebwenato as being the most “well-known form of Marshallese orality” (p. 38). The Marshallese-English dictionary defined bwebwenato as talk, conversation, story, history, article, episode, lore, myth, or tale (cited in Jetnil Kijiner, 2014). Three years later in 2017, bwebwenato was utilised in a doctoral project by Natalie Nimmer as a research method to gather “talk stories” about the experiences of 10 Marshallese experts in knowledge and skills ranging from sewing to linguistics, canoe-making and business. Our collective bwebwenato in this paper centres on Marshallese ideas and language. The philosophy of Marshallese knowledge is rooted in our “Kajin Majel”, or Marshallese language and is shared and transmitted through our oral traditions. For instance, through our historical stories and myths. Marshallese philosophy, that is, the knowledge systems inherent in our beliefs, values, customs, and practices are shared. They are inherently relational, meaning that knowledge systems and philosophies within our world are connected, in mind, body, and spirit (Jetnil-Kijiner, 2014; Nimmer, 2017). Although some Marshallese believe that our knowledge is disappearing as more and more elders pass away, it is therefore important work together, and learn from each other about the knowledges shared not only by the living but through their lamentations and stories of those who are no longer with us (Jetnil-Kijiner, 2014). As a Marshallese practice, weaving has been passed-down from generation to generation. Although the art of weaving is no longer as common as it used to be, the artefacts such as the “jaki-ed” (clothing mats) continue to embody significant Marshallese values and traditions. For our weavers, the jouj (check spelling) is the centre of the mat and it is where the weaving starts. When the jouj is correct and weaved well, the remainder and every other part of the mat will be right. The jouj is symbolic of the “heart” and if the heart is prepared well, trained well, then life or all other parts of the body will be well (Taafaki & Fowler, 2019). In that light, we have applied the same to this paper. Conceptualising and drawing from cultural practices that are close and dear to our hearts embodies a significant ontological attempt to prioritize our own knowledge and language, a sense of endearment to who we are and what we believe education to be like for us and the next generation. The application of the phrase “Majolizing '' was used by the Ministry of Education when Hilda Heine was minister, to weave cultural ideas and language into the way that teachers understand the curriculum, develop lesson plans and execute them in the classroom. Despite this, there were still concerns with the embedded colonized practices where teachers defaulted to eurocentric methods of doing things, like the strategies provided in the textbooks given to us. In some ways, our education was slow to adjust to the “Majolizing '' intention by our former minister. In this paper, we provide Kanne Lobal as a way to contribute to the “Majolizing intention” and perhaps speed up yet still be collectively responsible to all involved in education. Kajin Wa and Kanne Lobal “Wa” is the Marshallese concept for canoe. Kajin wa, as in canoe language, has a lot of symbolic meaning linked to deeply-held Marshallese values and practices. The canoe was the foundational practice that supported the livelihood of harsh atoll island living which reflects the Marshallese social world. The experts of Kajin wa often refer to “wa” as being the vessel of life, a means and source of sustaining life (Kelen, 2009, cited in Miller, 2010). “Jouj” means kindness and is the lower part of the main hull of the canoe. It is often referred to by some canoe builders in the RMI as the heart of the canoe and is linked to love. The jouj is one of the first parts of the canoe that is built and is “used to do all other measurements, and then the rest of the canoe is built on top of it” (Miller, 2010, p. 67). The significance of the jouj is that when the canoe is in the water, the jouj is the part of the hull that is underwater and ensures that all the cargo and passengers are safe. For Marshallese, jouj or kindness is what living is about and is associated with selflessly carrying the responsibility of keeping the family and community safe. The parts of the canoe reflect Marshallese culture, legend, family, lineage, and kinship. They embody social responsibilities that guide, direct, and sustain Marshallese families’ wellbeing, from atoll to atoll. For example, the rojak (boom), rojak maan (upper boom), rojak kōrā (lower boom), and they support the edges of the ujelā/ujele (sail) (see figure 1). The literal meaning of rojak maan is male boom and rojak kōrā means female boom which together strengthens the sail and ensures the canoe propels forward in a strong yet safe way. Figuratively, the rojak maan and rojak kōrā symbolise the mother and father relationship which when strong, through the jouj (kindness and love), it can strengthen families and sustain them into the future. Figure 1. Parts of the canoe Source: https://www.canoesmarshallislands.com/2014/09/names-of-canoe-parts/ From a socio-cultural, communal, and leadership view, the canoe (wa) provides understanding of the relationships required to inspire and sustain Marshallese peoples’ education and learning. We draw from Kajin wa because they provide cultural ideas and practices that enable understanding of education and leadership necessary for sustaining Marshallese people and realities in Oceania. When building a canoe, the women are tasked with the weaving of the ujelā/ujele (sail) and to ensure that it is strong enough to withstand long journeys and the fierce winds and waters of the ocean. The Kanne Lobal relates to the front part of the ujelā/ujele (sail) where the rojak maan and rojak kōrā meet and connect (see the red lines in figure 1). Kanne Lobal is linked to the strategic use of the ujelā/ujele by navigators, when there is no wind north wind to propel them forward, to find ways to capture the winds so that their journey can continue. As a proverbial saying, Kanne Lobal is used to ignite thinking and inspire and transform practice particularly when the journey is rough and tough. In this paper we draw from Kanne Lobal to ignite, inspire, and transform our educational and leadership practices, a move to explore what has always been meaningful to Marshallese people when we are faced with challenges. The Kanne Lobal utilises our language, and cultural practices and values by sourcing from the concepts of jouj (kindness, love), kautiej (respect), and jouj eo mour eo (reciprocity). A key Marshallese proverb, “Enra bwe jen lale rara”, is the cultural practice where families enact compassion through the sharing of food in all occurrences. The term “enra” is a small basket weaved from the coconut leaves, and often used by Marshallese as a plate to share and distribute food amongst each other. Bwe-jen-lale-rara is about noticing and providing for the needs of others, and “enra” the basket will help support and provide for all that are in need. “Enra-bwe-jen-lale-rara” is symbolic of cultural exchange and reciprocity and the cultural values associated with building and maintaining relationships, and constantly honouring each other. As a Marshallese practice, in this article we share our understanding and knowledge about the challenges as well as possible solutions for education concerns in our nation. In addition, we highlight another proverb, “wa kuk wa jimor”, which relates to having one canoe, and despite its capacity to feed and provide for the individual, but within the canoe all people can benefit from what it can provide. In the same way, we provide in this paper a cultural framework that will enable all educators to benefit from. It is a framework that is far-reaching and relevant to the lived realities of Marshallese people today. Kumit relates to people united to build strength, all co-operating and working together, living in peace, harmony, and good health. Kanne Lobal: conceptual framework for education and leadership An education framework is a conceptual structure that can be used to capture ideas and thinking related to aspects of learning. Kanne Lobal is conceptualised and framed in this paper as an educational framework. Kanne Lobal highlights the significance of education as a collective partnership whereby leadership is an important aspect. Kanne Lobal draws-from indigenous Marshallese concepts like kautiej (respect), jouj eo mour eo (reciprocity), and jouj (kindness, heart). The role of a leader, including an education leader, is to prioritise collective learning and partnerships that benefits Marshallese people and the continuity and survival of the next generation (Heine, 2002; Thaman, 1995). As described by Ejnar Aerōk, an expert canoe builder in the RMI, he stated: “jerbal ippān doon bwe en maron maan wa e” (cited in Miller, 2010, p. 69). His description emphasises the significance of partnerships and working together when navigating and journeying together in order to move the canoe forward. The kubaak, the outrigger of the wa (canoe) is about “partnerships”. For us as elementary school leaders on Majuro, kubaak encourages us to value collaborative partnerships with each other as well as our communities, PSS, and other stakeholders. Partnerships is an important part of the Kanne Lobal education and leadership framework. It requires ongoing bwebwenato – the inspiring as well as confronting and challenging conversations that should be mediated and negotiated if we and our education stakeholders are to journey together to ensure that the educational services we provide benefits our next generation of young people in the RMI. Navigating ahead the partnerships, mediation, and negotiation are the core values of jouj (kindness, love), kautiej (respect), and jouj eo mour eo (reciprocity). As an organic conceptual framework grounded in indigenous values, inspired through our lived experiences, Kanne Lobal provides ideas and concepts for re-thinking education and leadership practices that are conducive to learning and teaching in the schooling context in the RMI. By no means does it provide the solution to the education ills in our nation. However, we argue that Kanne Lobal is a more relevant approach which is much needed for the negatively stigmatised system as a consequence of the various colonial administrations that have and continue to shape and reframe our ideas about what education should be like for us in the RMI. Moreover, Kannel Lobal is our attempt to decolonize the framing of education and leadership, moving our bwebwenato to re-framing conversations of teaching and learning so that our cultural knowledge and values are foregrounded, appreciated, and realised within our education system. Bwebwenato: sharing our stories In this section, we use bwebwenato as a method of gathering and capturing our stories as data. Below we capture our stories and ongoing conversations about the richness in Marshallese cultural knowledge in the outer islands and on Majuro and the potentialities in Kanne Lobal. Danny Jim When I was in third grade (9-10 years of age), during my grandfather’s speech in Arno, an atoll near Majuro, during a time when a wa (canoe) was being blessed and ready to put the canoe into the ocean. My grandfather told me the canoe was a blessing for the family. “Without a canoe, a family cannot provide for them”, he said. The canoe allows for travelling between places to gather food and other sources to provide for the family. My grandfather’s stories about people’s roles within the canoe reminded me that everyone within the family has a responsibility to each other. Our women, mothers and daughters too have a significant responsibility in the journey, in fact, they hold us, care for us, and given strength to their husbands, brothers, and sons. The wise man or elder sits in the middle of the canoe, directing the young man who help to steer. The young man, he does all the work, directed by the older man. They take advice and seek the wisdom of the elder. In front of the canoe, a young boy is placed there and because of his strong and youthful vision, he is able to help the elder as well as the young man on the canoe. The story can be linked to the roles that school leaders, teachers, and students have in schooling. Without each person knowing intricately their role and responsibility, the sight and vision ahead for the collective aspirations of the school and the community is difficult to comprehend. For me, the canoe is symbolic of our educational journey within our education system. As the school leader, a central, trusted, and respected figure in the school, they provide support for teachers who are at the helm, pedagogically striving to provide for their students. For without strong direction from the school leaders and teachers at the helm, the students, like the young boy, cannot foresee their futures, or envisage how education can benefit them. This is why Kanne Lobal is a significant framework for us in the Marshall Islands because within the practice we are able to take heed and empower each other so that all benefit from the process. Kanne Lobal is linked to our culture, an essential part of who we are. We must rely on our own local approaches, rather than relying on others that are not relevant to what we know and how we live in today’s society. One of the things I can tell is that in Majuro, compared to the outer islands, it’s different. In the outer islands, parents bring children together and tell them legends and stories. The elders tell them about the legends and stories – the bwebwenato. Children from outer islands know a lot more about Marshallese legends compared to children from the Majuro atoll. They usually stay close to their parents, observe how to prepare food and all types of Marshallese skills. Loretta Joseph Case There is little Western influence in the outer islands. They grow up learning their own culture with their parents, not having tv. They are closely knit, making their own food, learning to weave. They use fire for cooking food. They are more connected because there are few of them, doing their own culture. For example, if they’re building a house, the ladies will come together and make food to take to the males that are building the house, encouraging them to keep on working - “jemjem maal” (sharpening tools i.e. axe, like encouraging workers to empower them). It’s when they bring food and entertainment. Rubon Rubon Togetherness, work together, sharing of food, these are important practices as a school leader. Jemjem maal – the whole village works together, men working and the women encourage them with food and entertainment. All the young children are involved in all of the cultural practices, cultural transmission is consistently part of their everyday life. These are stronger in the outer islands. Kanne Lobal has the potential to provide solutions using our own knowledge and practices. Connie Joel When new teachers become a teacher, they learn more about their culture in teaching. Teaching raises the question, who are we? A popular saying amongst our people, “Aelon kein ad ej aelon in manit”, means that “Our islands are cultural islands”. Therefore, when we are teaching, and managing the school, we must do this culturally. When we live and breathe, we must do this culturally. There is more socialising with family and extended family. Respect the elderly. When they’re doing things the ladies all get together, in groups and do it. Cut the breadfruit, and preserve the breadfruit and pandanus. They come together and do it. Same as fishing, building houses, building canoes. They use and speak the language often spoken by the older people. There are words that people in the outer islands use and understand language regularly applied by the elderly. Respect elderly and leaders more i.e., chiefs (iroj), commoners (alap), and the workers on the land (ri-jerbal) (social layer under the commoners). All the kids, they gather with their families, and go and visit the chiefs and alap, and take gifts from their land, first produce/food from the plantation (eojōk). Tommy Almet The people are more connected to the culture in the outer islands because they help one another. They don’t have to always buy things by themselves, everyone contributes to the occasion. For instance, for birthdays, boys go fishing, others contribute and all share with everyone. Kanne Lobal is a practice that can bring people together – leaders, teachers, stakeholders. We want our colleagues to keep strong and work together to fix problems like students and teachers’ absenteeism which is a big problem for us in schools. Demetria Malachi The culture in the outer islands are more accessible and exposed to children. In Majuro, there is a mixedness of cultures and knowledges, influenced by Western thinking and practices. Kanne Lobal is an idea that can enhance quality educational purposes for the RMI. We, the school leaders who did GCSL, we want to merge and use this idea because it will help benefit students’ learning and teachers’ teaching. Kanne Lobal will help students to learn and teachers to teach though traditional skills and knowledge. We want to revitalize our ways of life through teaching because it is slowly fading away. Also, we want to have our own Marshallese learning process because it is in our own language making it easier to use and understand. Essentially, we want to proudly use our own ways of teaching from our ancestors showing the appreciation and blessings given to us. Way Forward To think of ways forward is about reflecting on the past and current learnings. Instead of a traditional discussion within a research publication, we have opted to continue our bwebwenato by sharing what we have learnt through the Graduate Certificate in School Leadership (GCSL) programme. Our bwebwenato does not end in this article and this opportunity to collaborate and partner together in this piece of writing has been a meaningful experience to conceptualise and unpack the Kanne Lobal framework. Our collaborative bwebwenato has enabled us to dig deep into our own wise knowledges for guidance through mediating and negotiating the challenges in education and leadership (Sanga & Houma, 2004). For example, bwe-jen-lale-rara reminds us to inquire, pay attention, and focus on supporting the needs of others. Through enra-bwe-jen-lale-rara, it reminds us to value cultural exchange and reciprocity which will strengthen the development and maintaining of relationships based on ways we continue to honour each other (Nimmer, 2017). We not only continue to support each other, but also help mentor the next generation of school leaders within our education system (Heine, 2002). Education and leadership are all about collaborative partnerships (Sanga & Chu, 2009; Thaman, 1997). Developing partnerships through the GCSL was useful learning for us. It encouraged us to work together, share knowledge, respect each other, and be kind. The values of jouj (kindness, love), kautiej (respect), and jouj eo mour eo (reciprocity) are meaningful in being and becoming and educational leader in the RMI (Jetnil-Kijiner, 2014; Miller, 2010; Nimmer, 2017). These values are meaningful for us practice particularly given the drive by PSS for schools to become accredited. The workshops and meetings delivered during the GCSL in the RMI from 2018 to 2019 about Kanne Lobal has given us strength to share our stories and experiences from the meeting with the stakeholders. But before we met with the stakeholders, we were encouraged to share and speak in our language within our courses: EDP05 (Professional Development and Learning), EDP06 (School Leadership), EDP07 (School Management), EDP08 (Teaching and Learning), and EDP09 (Community Partnerships). In groups, we shared our presentations with our peers, the 15 school leaders in the GCSL programme. We also invited USP RMI staff. They liked the way we presented Kannel Lobal. They provided us with feedback, for example: how the use of the sail on the canoe, the parts and their functions can be conceptualised in education and how they are related to the way that we teach our own young people. Engaging stakeholders in the conceptualisation and design stages of Kanne Lobal strengthened our understanding of leadership and collaborative partnerships. Based on various meetings with the RMI Pacific Resources for Education and Learning (PREL) team, PSS general assembly, teachers from the outer islands, and the PSS executive committee, we were able to share and receive feedback on the Kanne Lobal framework. The coordinators of the PREL programme in the RMI were excited by the possibilities around using Kanne Lobal, as a way to teach culture in an inspirational way to Marshallese students. Our Marshallese knowledge, particularly through the proverbial meaning of Kanne Lobal provided so much inspiration and insight for the groups during the presentation which gave us hope and confidence to develop the framework. Kanne Lobal is an organic and indigenous approach, grounded in Marshallese ways of doing things (Heine, 2002; Taafaki & Fowler, 2019). Given the persistent presence of colonial processes within the education system and the constant reference to practices and initiatives from the US, Kanne Lobal for us provides a refreshing yet fulfilling experience and makes us feel warm inside because it is something that belongs to all Marshallese people. Conclusion Marshallese indigenous knowledge and practices provide meaningful educational and leadership understanding and learnings. They ignite, inspire, and transform thinking and practice. The Kanne Lobal conceptual framework emphasises key concepts and values necessary for collaborative partnerships within education and leadership practices in the RMI. The bwebwenato or talk stories have been insightful and have highlighted the strengths and benefits that our Marshallese ideas and practices possess when looking for appropriate and relevant ways to understand education and leadership. Acknowledgements We want to acknowledge our GCSL cohort of school leaders who have supported us in the development of Kanne Lobal as a conceptual framework. A huge kommol tata to our friends: Joana, Rosana, Loretta, Jellan, Alvin, Ellice, Rolando, Stephen, and Alan. References Benson, C. (2002). Preface. In F. Pene, A. M. Taufe’ulungaki, & C. Benson (Eds.), Tree of Opportunity: re-thinking Pacific Education (p. iv). Suva, Fiji: University of the South Pacific, Institute of Education. Bessarab, D., Ng’andu, B. (2010). Yarning about yarning as a legitimate method in indigenous research. International Journal of Critical Indigenous Studies, 3(1), 37-50. Fa’avae, D., Jones, A., & Manu’atu, L. (2016). Talanoa’i ‘a e talanoa - talking about talanoa: Some dilemmas of a novice researcher. AlterNative: An Indigenous Journal of Indigenous Peoples,12(2),138-150. Heine, H. C. (2002). A Marshall Islands perspective. In F. Pene, A. M. Taufe’ulungaki, & C. 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Father's involvement is something that influences the child's problematic behavior. The purpose of this study is to investigate whether father involvement can influence children's problematic behavior. This study used the systematic literature review (SLR) method by referring to 10 valid articles published in the last 10 years with the publication years between 2013 - 2023. The finding of the literature shows that there is a significant impact of father involvement on the children's problematic behavior. The more the father is involved in the children's development, the lower the level of children's problematic behavior is. The image of a father as a mentor and motivator for early childhood can still be explored in depth. Because of the limitations of this study, this study suggests that future research can further discuss the impact of the father’s involvement in the children's problematic behavior in a specific cultural aspect by considering cross-cultural factors. 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Objective Sudden hearing loss is a frightening symptom that often prompts an urgent or emergent visit to a health care provider. It is frequently, but not universally, accompanied by tinnitus and/or vertigo. Sudden sensorineural hearing loss affects 5 to 27 per 100,000 people annually, with about 66,000 new cases per year in the United States. This guideline update provides evidence-based recommendations for the diagnosis, management, and follow-up of patients who present with sudden hearing loss. It focuses on sudden sensorineural hearing loss in adult patients aged 18 and over and primarily on those with idiopathic sudden sensorineural hearing loss. Prompt recognition and management of sudden sensorineural hearing loss may improve hearing recovery and patient quality of life. The guideline update is intended for all clinicians who diagnose or manage adult patients who present with sudden hearing loss. Purpose The purpose of this guideline update is to provide clinicians with evidence-based recommendations in evaluating patients with sudden hearing loss and sudden sensorineural hearing loss, with particular emphasis on managing idiopathic sudden sensorineural hearing loss. The guideline update group recognized that patients enter the health care system with sudden hearing loss as a nonspecific primary complaint. Therefore, the initial recommendations of this guideline update address distinguishing sensorineural hearing loss from conductive hearing loss at the time of presentation with hearing loss. They also clarify the need to identify rare, nonidiopathic sudden sensorineural hearing loss to help separate those patients from those with idiopathic sudden sensorineural hearing loss, who are the target population for the therapeutic interventions that make up the bulk of the guideline update. By focusing on opportunities for quality improvement, this guideline should improve diagnostic accuracy, facilitate prompt intervention, decrease variations in management, reduce unnecessary tests and imaging procedures, and improve hearing and rehabilitative outcomes for affected patients. Methods Consistent with the American Academy of Otolaryngology–Head and Neck Surgery Foundation’s Clinical Practice Guideline Development Manual, Third Edition, the guideline update group was convened with representation from the disciplines of otolaryngology–head and neck surgery, otology, neurotology, family medicine, audiology, emergency medicine, neurology, radiology, advanced practice nursing, and consumer advocacy. A systematic review of the literature was performed, and the prior clinical practice guideline on sudden hearing loss was reviewed in detail. Key action statements (KASs) were updated with new literature, and evidence profiles were brought up to the current standard. Research needs identified in the original clinical practice guideline and data addressing them were reviewed. Current research needs were identified and delineated. Results The guideline update group made strong recommendations for the following: clinicians should distinguish sensorineural hearing loss from conductive hearing loss when a patient first presents with sudden hearing loss (KAS 1); clinicians should educate patients with sudden sensorineural hearing loss about the natural history of the condition, the benefits and risks of medical interventions, and the limitations of existing evidence regarding efficacy (KAS 7); and clinicians should counsel patients with sudden sensorineural hearing loss who have residual hearing loss and/or tinnitus about the possible benefits of audiological rehabilitation and other supportive measures (KAS 13). These strong recommendations were modified from the initial clinical practice guideline for clarity and timing of intervention. The guideline update group made strong recommendation against the following: clinicians should not order routine computed tomography of the head in the initial evaluation of a patient with presumptive sudden sensorineural hearing loss (KAS 3); clinicians should not obtain routine laboratory tests in patients with sudden sensorineural hearing loss (KAS 5); and clinicians should not routinely prescribe antivirals, thrombolytics, vasodilators, or vasoactive substances to patients with sudden sensorineural hearing loss (KAS 11). The guideline update group made recommendations for the following: clinicians should assess patients with presumptive sudden sensorineural hearing loss through history and physical examination for bilateral sudden hearing loss, recurrent episodes of sudden hearing loss, and/or focal neurologic findings (KAS 2); in patients with sudden hearing loss, clinicians should obtain, or refer to a clinician who can obtain, audiometry as soon as possible (within 14 days of symptom onset) to confirm the diagnosis of sudden sensorineural hearing loss (KAS 4); clinicians should evaluate patients with sudden sensorineural hearing loss for retrocochlear pathology by obtaining a magnetic resonance imaging or auditory brainstem response (KAS 6); clinicians should offer, or refer to a clinician who can offer, intratympanic steroid therapy when patients have incomplete recovery from sudden sensorineural hearing loss 2 to 6 weeks after onset of symptoms (KAS 10); and clinicians should obtain follow-up audiometric evaluation for patients with sudden sensorineural hearing loss at the conclusion of treatment and within 6 months of completion of treatment (KAS 12). These recommendations were clarified in terms of timing of intervention and audiometry, as well as method of retrocochlear workup. The guideline update group offered the following KASs as options: clinicians may offer corticosteroids as initial therapy to patients with sudden sensorineural hearing loss within 2 weeks of symptom onset (KAS 8); clinicians may offer, or refer to a clinician who can offer, hyperbaric oxygen therapy combined with steroid therapy within 2 weeks of onset of sudden sensorineural hearing loss (KAS 9a); and clinicians may offer, or refer to a clinician who can offer, hyperbaric oxygen therapy combined with steroid therapy as salvage therapy within 1 month of onset of sudden sensorineural hearing loss (KAS 9b). Differences from Prior Guideline Incorporation of new evidence profiles to include quality improvement opportunities, confidence in the evidence, and differences of opinion Included 10 clinical practice guidelines, 29 new systematic reviews, and 36 new randomized controlled trials Highlights the urgency of evaluation and initiation of treatment, if treatment is offered, by emphasizing the time from symptom occurrence Clarification of terminology by changing potentially unclear statements; use of the term sudden sensorineural hearing loss to mean idiopathic sudden sensorineural hearing loss to emphasize that over 90% of sudden sensorineural hearing loss is idiopathic sudden sensorineural hearing loss and to avoid confusion in nomenclature for the reader Changes to the key action statements (KASs) from the original guideline: KAS 1: When a patient first presents with sudden hearing loss, conductive hearing loss should be distinguished from sensorineural. KAS 2: The utility of history and physical examination when assessing for modifying factors is emphasized. KAS 3: The word routine is added to clarify that this statement addresses a nontargeted head computed tomography scan that is often ordered in the emergency room setting for patients presenting with sudden hearing loss. It does not refer to targeted scans such as a temporal bone computed tomography scan to assess for temporal bone pathology. KAS 4: The importance of audiometric confirmation of hearing status as soon as possible and within 14 days of symptom onset is emphasized. KAS 5: New studies were added to confirm the lack of benefit of nontargeted laboratory testing in sudden sensorineural hearing loss. KAS 6: Audiometric follow-up is excluded as a reasonable workup for retrocochlear pathology. Magnetic resonance imaging, computed tomography scan if magnetic resonance imaging cannot be done, or, secondarily, auditory brainstem response evaluation are the modalities recommended. A time frame for such testing is not specified, nor is it specified which clinician should be ordering this workup; however, it is implied that it would be the general or subspecialty otolaryngologist. KAS 7: The importance of shared decision making is highlighted, and salient points are emphasized. KAS 8: The option for corticosteroid intervention within 2 weeks of symptom onset is emphasized. KAS 9: Changed to KAS 9a and 9b; hyperbaric oxygen therapy remains an option but only when combined with steroid therapy for either initial treatment (9a) or for salvage therapy (9b). The timing is within 2 weeks of onset for initial therapy and within 1 month of onset of sudden sensorineural hearing loss for salvage therapy. KAS 10: Intratympanic steroid therapy for salvage is recommended within 2 to 6 weeks following onset of sudden sensorineural hearing loss. The time to treatment is defined and emphasized. KAS 11: Antioxidants were removed from the list of interventions that the clinical practice guideline recommends against using. KAS 12: Follow-up audiometry at conclusion of treatment and also within 6 months posttreatment is added. KAS 13: This statement on audiologic rehabilitation includes patients who have residual hearing loss and/or tinnitus who may benefit from treatment. Addition of an algorithm outlining KASs Enhanced emphasis on patient education and shared decision making with tools provided to assist in the same

Objective Sudden hearing loss is a frightening symptom that often prompts an urgent or emergent visit to a health care provider. It is frequently but not universally accompanied by tinnitus and/or vertigo. Sudden sensorineural hearing loss affects 5 to 27 per 100,000 people annually, with about 66,000 new cases per year in the United States. This guideline update provides evidence-based recommendations for the diagnosis, management, and follow-up of patients who present with sudden hearing loss. It focuses on sudden sensorineural hearing loss in adult patients aged ≥18 years and primarily on those with idiopathic sudden sensorineural hearing loss. Prompt recognition and management of sudden sensorineural hearing loss may improve hearing recovery and patient quality of life. The guideline update is intended for all clinicians who diagnose or manage adult patients who present with sudden hearing loss. Purpose The purpose of this guideline update is to provide clinicians with evidence-based recommendations in evaluating patients with sudden hearing loss and sudden sensorineural hearing loss, with particular emphasis on managing idiopathic sudden sensorineural hearing loss. The guideline update group recognized that patients enter the health care system with sudden hearing loss as a nonspecific primary complaint. Therefore, the initial recommendations of this guideline update address distinguishing sensorineural hearing loss from conductive hearing loss at the time of presentation with hearing loss. They also clarify the need to identify rare, nonidiopathic sudden sensorineural hearing loss to help separate those patients from those with idiopathic sudden sensorineural hearing loss, who are the target population for the therapeutic interventions that make up the bulk of the guideline update. By focusing on opportunities for quality improvement, this guideline should improve diagnostic accuracy, facilitate prompt intervention, decrease variations in management, reduce unnecessary tests and imaging procedures, and improve hearing and rehabilitative outcomes for affected patients. Methods Consistent with the American Academy of Otolaryngology–Head and Neck Surgery Foundation’s “Clinical Practice Guideline Development Manual, Third Edition” (Rosenfeld et al. Otolaryngol Head Neck Surg. 2013;148[1]:S1-S55), the guideline update group was convened with representation from the disciplines of otolaryngology–head and neck surgery, otology, neurotology, family medicine, audiology, emergency medicine, neurology, radiology, advanced practice nursing, and consumer advocacy. A systematic review of the literature was performed, and the prior clinical practice guideline on sudden hearing loss was reviewed in detail. Key Action Statements (KASs) were updated with new literature, and evidence profiles were brought up to the current standard. Research needs identified in the original clinical practice guideline and data addressing them were reviewed. Current research needs were identified and delineated. Results The guideline update group made strong recommendations for the following: (KAS 1) Clinicians should distinguish sensorineural hearing loss from conductive hearing loss when a patient first presents with sudden hearing loss. (KAS 7) Clinicians should educate patients with sudden sensorineural hearing loss about the natural history of the condition, the benefits and risks of medical interventions, and the limitations of existing evidence regarding efficacy. (KAS 13) Clinicians should counsel patients with sudden sensorineural hearing loss who have residual hearing loss and/or tinnitus about the possible benefits of audiologic rehabilitation and other supportive measures. These strong recommendations were modified from the initial clinical practice guideline for clarity and timing of intervention. The guideline update group made strong recommendations against the following: (KAS 3) Clinicians should not order routine computed tomography of the head in the initial evaluation of a patient with presumptive sudden sensorineural hearing loss. (KAS 5) Clinicians should not obtain routine laboratory tests in patients with sudden sensorineural hearing loss. (KAS 11) Clinicians should not routinely prescribe antivirals, thrombolytics, vasodilators, or vasoactive substances to patients with sudden sensorineural hearing loss. The guideline update group made recommendations for the following: (KAS 2) Clinicians should assess patients with presumptive sudden sensorineural hearing loss through history and physical examination for bilateral sudden hearing loss, recurrent episodes of sudden hearing loss, and/or focal neurologic findings. (KAS 4) In patients with sudden hearing loss, clinicians should obtain, or refer to a clinician who can obtain, audiometry as soon as possible (within 14 days of symptom onset) to confirm the diagnosis of sudden sensorineural hearing loss. (KAS 6) Clinicians should evaluate patients with sudden sensorineural hearing loss for retrocochlear pathology by obtaining magnetic resonance imaging or auditory brainstem response. (KAS 10) Clinicians should offer, or refer to a clinician who can offer, intratympanic steroid therapy when patients have incomplete recovery from sudden sensorineural hearing loss 2 to 6 weeks after onset of symptoms. (KAS 12) Clinicians should obtain follow-up audiometric evaluation for patients with sudden sensorineural hearing loss at the conclusion of treatment and within 6 months of completion of treatment. These recommendations were clarified in terms of timing of intervention and audiometry and method of retrocochlear workup. The guideline update group offered the following KASs as options: (KAS 8) Clinicians may offer corticosteroids as initial therapy to patients with sudden sensorineural hearing loss within 2 weeks of symptom onset. (KAS 9a) Clinicians may offer, or refer to a clinician who can offer, hyperbaric oxygen therapy combined with steroid therapy within 2 weeks of onset of sudden sensorineural hearing loss. (KAS 9b) Clinicians may offer, or refer to a clinician who can offer, hyperbaric oxygen therapy combined with steroid therapy as salvage therapy within 1 month of onset of sudden sensorineural hearing loss. Differences from Prior Guideline Incorporation of new evidence profiles to include quality improvement opportunities, confidence in the evidence, and differences of opinion Included 10 clinical practice guidelines, 29 new systematic reviews, and 36 new randomized controlled trials Highlights the urgency of evaluation and initiation of treatment, if treatment is offered, by emphasizing the time from symptom occurrence Clarification of terminology by changing potentially unclear statements; use of the term sudden sensorineural hearing loss to mean idiopathic sudden sensorineural hearing loss to emphasize that >90% of sudden sensorineural hearing loss is idiopathic sudden sensorineural hearing loss and to avoid confusion in nomenclature for the reader Changes to the KASs from the original guideline: KAS 1—When a patient first presents with sudden hearing loss, conductive hearing loss should be distinguished from sensorineural. KAS 2—The utility of history and physical examination when assessing for modifying factors is emphasized. KAS 3—The word “routine” is added to clarify that this statement addresses nontargeted head computerized tomography scan that is often ordered in the emergency room setting for patients presenting with sudden hearing loss. It does not refer to targeted scans, such as temporal bone computerized tomography scan, to assess for temporal bone pathology. KAS 4—The importance of audiometric confirmation of hearing status as soon as possible and within 14 days of symptom onset is emphasized. KAS 5—New studies were added to confirm the lack of benefit of nontargeted laboratory testing in sudden sensorineural hearing loss. KAS 6—Audiometric follow-up is excluded as a reasonable workup for retrocochlear pathology. Magnetic resonance imaging, computerized tomography scan if magnetic resonance imaging cannot be done, and, secondarily, auditory brainstem response evaluation are the modalities recommended. A time frame for such testing is not specified, nor is it specified which clinician should be ordering this workup; however, it is implied that it would be the general or subspecialty otolaryngologist. KAS 7—The importance of shared decision making is highlighted, and salient points are emphasized. KAS 8—The option for corticosteroid intervention within 2 weeks of symptom onset is emphasized. KAS 9—Changed to KAS 9A and 9B. Hyperbaric oxygen therapy remains an option but only when combined with steroid therapy for either initial treatment (9A) or salvage therapy (9B). The timing of initial therapy is within 2 weeks of onset, and that of salvage therapy is within 1 month of onset of sudden sensorineural hearing loss. KAS 10—Intratympanic steroid therapy for salvage is recommended within 2 to 6 weeks following onset of sudden sensorineural hearing loss. The time to treatment is defined and emphasized. KAS 11—Antioxidants were removed from the list of interventions that the clinical practice guideline recommends against using. KAS 12—Follow-up audiometry at conclusion of treatment and also within 6 months posttreatment is added. KAS 13—This statement on audiologic rehabilitation includes patients who have residual hearing loss and/or tinnitus who may benefit from treatment. Addition of an algorithm outlining KASs Enhanced emphasis on patient education and shared decision making with tools provided to assist in same

A review article devoted to the book of Andrzej Blikle – Doktryna jakości. Rzecz o skutecznym zarządzaniu. As pointed out by the Author, the book is a case of a work rare on the Polish publishing market, written by an outstanding scientist, who successfully runs a business activity. The combination of practical experience with theoretical knowledge gave a result that may be satisfying both for practitioners as well as theorists, and also those who want to get to know the ins and outs of an effective and efficient business management. The Author of the review believes that it is an important voice for shaping an inclusive socio-economic system, which constitutes a value in itself. Although the book is mainly concerned with business management, its message has a much wider dimension and is concerned with real measures of wealth, money and people’s lives. The book was awarded The SGH Collegium of Business Administration Award “For the best scientific work in the field of business administration in the years 2014-2015”. Andrzej Jacek Blikle Doktryna jakości. Rzecz o skutecznym zarządzaniu (The Doctrine of Quality. On Effective Management) Gliwice, Helion Publishing Company, 2014, p. 546 Introduction One of the distinctive features of the contemporary economy and contemporary world is a kind of obsession of quantity which is related to thoughtless consumerism, unfavourable to the care for the quality of the work and the quality of the produced and consumed goods and services. It is accompanied by culture (or rather non-culture) of singleness. Therefore, the book The Doctrine of Quality by Andrzej Blikle is like a breath of fresh air. It is a different perspective on the economy and the model of operation of enterprises, on the model of work and life of people. A. Blikle proves that it can be done otherwise. He proves it on the basis of careful studies of the source literature – as expected from a professor of mathematics and an economist, but also on the basis of his own experience gained during the scientific and educational work, and most of all through the economic practice. In the world governed by the obsession of quantity, characterised by fragility, shortness of human relationships, including the relationship of the entrepreneur – employee, A. Blikle chooses durability of these relations, creativity, responsibility, quality of work and production, and ethics. The Doctrine of Quality is a rare example of the work on the Polish publishing market, whose author is a prominent scientist, successfully conducting a business activity for more than two decades, which has contributed to the development of the family company – a known confectionery brand “A. Blikle”. The combination of practical experience with theoretical knowledge gave a result that may be satisfying both for practitioners as well as theorists, and also those who want to get to know the ins and outs of an effective and efficient business management, or develop the knowledge on this topic. In an attractive, clear narrative form, the author comprehensively presents the complexities of business management, indicating the sources of success, but also the reasons and the foundations of failures. At the same time, he presents these issues with an interdisciplinary approach, which contributes to thoroughness of the arguments and deeper reflections. Holism, typical to this book, is also expressed in the focus of A. Blikle not only on the economic, but also on social and ecological issues. Here, the author points to the possibility and need of reconciliation of the economic interests with social interests, and the care for the public good. Analyses of this subject are presented using the achievements of many areas of studies, in addition to economic sciences, including mathematics, sociology, psychology, medicine, and others. This gives a comprehensive picture of the complexity of business management – taking into account its close and distant environment. There are no longueurs in the book, although extensive (over 500 pages), or lengthy, or even unnecessary reasoning overwhelming the reader, as the text is illustrated with a number of examples from practice, and coloured with anecdotes. At the same time, the author does not avoid using expressions popular in the world of (not only) business. He proves that a motivational system which is not based on the approach of “carrot and stick” and without a devastating competition of a “rat race” is possible. The author supports his arguments with references not only to the interdisciplinary scientific achievements, but also to the economic historical experiences and to a variety of older and newer business models. There is a clear fascination with the reserves of creativity and productivity in the humanization of work. In fact, the author strongly exposes the potential of productivity and creativity in creating the conditions and atmosphere of work fostering elimination of fear of the future. He shows that such fear destroys creativity. It is not a coincidence that A. Blikle refers to the Fordist principles, including the warning that manufacturing and business do not consist of cheap buying and expensive selling. He reminds that Henry Ford, a legendary creator of the development of the automotive industry in the United States, put serving the public before the profit. The Doctrine of Quality is at the same time a book – proof that one of the most dangerous misconceptions or errors in the contemporary understanding of economics is finding that it is a science of making money, chremastics. Edmund Phelps and others warned against this in the year of the outbreak of the financial crisis in the USA in 2008, reminding that economics is not a science of making money but a science of relations between the economy and social life [Phelps, 2008]. Economics is a science of people in the process of management. Therefore, by definition, it applies to social values and ethos. Ethos is a general set of values, standards and models of proceedings adopted by a particular group of people. In this sense, ethos and economics as a science of people in the process of management are inseparable. Detaching economics from morality is in contradiction to the classical Smithian concept of economics, as Adam Smith combined the idea of the free market with morality. He treated his first work, The Theory of Moral Sentiments, as an inseparable basis for deliberations on the nature and causes of the wealth of nations, which was the subject of the subsequent work of this thinker [Smith, 1989; Smith, 2012]. Identifying economics with chremastics would then mean that all actions are acceptable and desired, if their outcome is earnings, profit, money. The book of A. Blikle denies it. It contains a number of case studies, which also stimulate broader reflections. Therefore, and also due to the features indicated above, it can be a very useful teaching aid in teaching entrepreneurship and management. The appearance of a book promoting the doctrine of quality and exposing the meaning of ethos of work is especially important because today the phenomenon of product adulteration becomes increasingly widespread, which is ironically referred to in literature as the “gold-plating” of products [Sennett, 2010, pp. 115-118], and the trend as “antifeatures”, that is intentionally limiting the efficiency and durability of products of daily use to create demand for new products. A model example of antifeature is a sim-lock installed in some telephones which makes it impossible to use SIM cards of foreign operators [Rohwetter, 2011, p. 48; Miszewski, 2013]. These types of negative phenomena are also promoted by the development of systemic solutions aiming at the diffusion of responsibility [Sennett, 2010]. This issue is presented among others by Nassim N.N. Taleb, in the book with a meaningful title Antifragile: How to Live in a World We Don’t Understand? The author proves that the economy and society lose their natural durability as a result of the introduction of numerous tools and methods of insurance against risks, but mostly by shifting the burden of risks on other entities [Taleb, 2012]. N.N. Taleb illustrates his arguments with numerous convincing examples and references to history, recalling, inter alia, that in ancient times there was no building control, but the constructors, e.g. of bridges had to sleep under them for some time after their construction, and the ancient aqueducts are still working well until today. So, he shows that a contemporary world, focused on quantitative effects, does not create a sound base for ethical behaviours and the care for the quality of work and manufacturing. Andrzej Blikle points to the need and possibility of opposing this, and opposing to what the Noble Price Winner for Economics, Joseph Stiglitz described as avarice triumphs over prudence [Stiglitz, 2015, p. 277]. The phrase emphasised in the book “Live and work with a purpose” is the opposition to the dangerous phenomena listed above, such as for example antifeatures. convincing that although the business activity is essentially focused on profits, making money, limited to this, it would be led to the syndrome of King Midas, who wanted to turn everything he touched into gold, but he soon realised that he was at risk of dying of starvation, as even the food turned into gold. What distinguishes this book is that almost every part of it forces in-depth reflections on the social and economic relations and brings to mind the works of other authors, but at the same time, creates a new context for them. So, A. Blikle clearly proves that both the economy and businesses need social rooting. This corresponds to the theses of the Hungarian intellectual Karl Polanyi, who in his renowned work The Great Transformation, already in 1944 argued that the economy is not rooted in the social relations [Polanyi, 2010, p. 70]. He pointed to the risk resulting from commodification of everything, and warned that allowing the market mechanism and competition to control the human life and environment would result in disintegration of society. Although K. Polanyi’s warnings were concerned with the industrial civilization, they are still valid, even now – when the digital revolution brings fundamental changes, among others, on the labour market – they strengthen it. The dynamics of these changes is so high that it seems that the thesis of Jeremy Rifkin on the end of work [Rifkin, 2003] becomes more plausible. It is also confirmed by recent analyses included in the book of this author, concerning the society of zero marginal cost and sharing economy [Rifkin, 2016], and the analyses concerning uberisation [Uberworld, 2016]. The book of Andrzej Blikle also evokes one of the basic asymmetries of the contemporary world, which is the inadequacy of the dynamics and sizes of the supply of products and services to the dynamics and sizes of the demand for them. Insufficient demand collides with the rapidly increasing, as a result of technological changes, possibilities of growth of production and services. This leads to overproduction and related therewith large negative implications, with features of wasteful economy of excess [Kornai, 2014]. It is accompanied by phenomena with features of some kind of market bulimia, sick consumerism, detrimental both to people and the environment [Rist, 2015]. One of the more compromising signs of the economy of excess and wasting of resources is wasting of food by rich countries, when simultaneously, there are areas of hunger in some parts of the world [Stuart, 2009]. At the same time, the economy of excess does not translate to the comfort of the buyers of goods – as in theory attributed to the consumer market. It is indicated in the publication of Janos Kornai concerning a comparative analysis of the features of socio-economic systems. While exposing his deep critical evaluation of socialist non-market systems, as economies of constant deficiency, he does not spare critical opinions on the capitalist economy of excess, with its quest for the growth of the gross domestic product (GDP) and profits. As an example of the economy of excess, he indicates the pharmaceutical industry, with strong monopolistic competition, dynamic innovativeness, wide selection for the buyers, flood of advertisements, manipulation of customers, and often bribing the doctors prescribing products [Kornai 2014, p. 202]. This type of abnormalities is not alien to other industries. Although J. Konrai appreciates that in the economy of excess, including the excess of production capacities, the excess is “grease” calming down and soothing clashes that occur in the mechanisms of adaptation, he also sees that those who claim that in the economy of excess (or more generally in the market economy), sovereignty of consumers dominates, exaggerate [Kornai, 2014, pp. 171-172], as the manufacturers, creating the supply, manipulate the consumers. Thus, there is an excess of supply – both of values as well as junk [Kornai, 2014, p. 176]. Analysing the economy of excess, J. Kornai brings this issue to the question of domination and subordination. It corresponds with the opinion of Jerzy Wilkin, according to whom, the free market can also enslave, so take away individual freedom; on the other hand, the lack of the free market can lead to enslavement as well. Economists willingly talk about the free market, and less about the free man [Wilkin, 2014, p. 4]. The economy of excess is one of the consequences of making a fetish of the economic growth and its measure, which is the gross domestic product (GDP) and treating it as the basis of social and economic activity. In such a system, the pressure of growth is created, so you must grow to avoid death! The system is thus comparable to a cyclist, who has to move forwards to keep his balance [Rist, 2015, p. 181]. It corresponds with the known, unflattering to economists, saying of Kenneth E. Boulding [1956], criticising the focus of economics on the economic growth, while ignoring social implications and consequences to the environment: Anyone who believes in indefinite growth in anything physical, on a physically finite planet, is either mad or an economist. [from: Rist, 2015, p. 268]. GDP is a very much needed or even indispensable measure for evaluation of the material level of the economies of individual countries and for comparing their economic health. However, it is insufficient for evaluation of the real level of welfare and quality of life. It requires supplementation with other measures, as it takes into account only the values created by the market purchase and sale transactions. It reflects only the market results of the activity of enterprises and households. Additionally, the GDP account threats the socially desirable and not desirable activities equally. Thus, the market activity related to social pathologies (e.g. functioning of prisons, prostitution, and drug dealing) also increase the GDP. It was accurately expressed already in 1968 by Robert Kennedy, who concluded the discussion on this issue saying that: the gross national product does not allow for the health of our children, the quality of their education or the joy of their play. It does not include the beauty of our poetry or the strength of our marriages, the intelligence of our public debate or the integrity of our public officials. It measures neither our wit nor our courage, neither our wisdom nor our learning, neither our compassion nor our devotion to our country, it measures everything in short, except that which makes life worthwhile [The Guardian, 2012]. While Grzegorz W. Kołodko even states that it should be surprising how it is possible that despite a number of alternative measures of social and economic progress, we are still in the corset of narrow measure of the gross product, which completely omits many significant aspects of the social process of reproduction [Kołodko, 2013, p. 44]. In this context he points to the necessity of triple sustainable growth – economic, social, and ecological [Kołodko, 2013, p. 377]. Transition from the industrial civilisation model to the new model of economy, to the age of information, causes a kind of cultural regression, a phenomenon of cultural anchoring in the old system. This type of lock-in effect - described in the source literature, that is the effect of locking in the existing frames and systemic solutions, is a barrier to development. The practice more and more often and clearer demonstrates that in the conditions of the new economy, the tools and traditional solutions turn out to be not only ineffective, but they even increase the risk of wrong social and economic decisions, made at different institutional levels. All this proves that new development models must be searched for and implemented, to allow counteraction to dysfunctions of the contemporary economy and wasting the development potential, resulting from a variety of maladjustments generated by the crisis of civilisation. Polish authors who devote much of their work to these issues include G.W. Kołodko, Jerzy Kleer, or Maciej Bałtowski. Studies confirm that there is a need for a new pragmatism, new, proinclusive model of shaping the social and economic reality, a model which is more socially rooted, aiming at reconciling social, economic and ecological objectives, with simultaneous optimisation of the use of the social and economic potential [Kołodko, 2013; Bałtowski, 2016; Kleer, 2015]. There is more and more evidence that the barriers to economic development growing in the global economy are closely related with the rooting of the economy in social relations. The book of A. Blikle becomes a part of this trend in a new and original manner. Although the author concentrates on the analyses of social relations mainly at the level of an enterprise, at the same time, he comments them at a macroeconomic, sociological and ethical level, and interdisciplinary contexts constitute an original value of the book. Conclusion I treat the book of Andrzej Blike as an important voice in favour of shaping an inclusive social and economic system, in favour of shaping inclusive enterprises, that is oriented on an optimal absorption of knowledge, innovation and effective reconciliation of the interests of entrepreneurs with the interests of employees and the interests of society. Inclusiveness is indeed a value in itself. It is understood as a mechanism/system limiting wasting of material resources and human capital, and counteracting environmental degradation. An inclusive social and economic system is a system oriented on optimisation of the production resources and reducing the span between the actual and potential level of economic growth and social development [Reforma, 2015]. And this is the system addressed by Andrzej Blikle in his book. At least this is how I see it. Although the book is mainly concerned with business management, its message has a much wider dimension and is concerned with real measures of wealth, money and people’s lives. null

Purpose: With application to the United States, this tutorial explores barriers in the American juvenile justice system for justice-involved youth (JIY) with cognitive-communication disorders (CCDs). It outlines models from abroad and reimagines the American juvenile justice system to include speech-language pathologists (SLPs) as interprofessional practice partners. Method: Interprofessional (i.e., criminal justice, speech-language pathology) literature from the United States and overseas is reviewed and summarized to explain the American juvenile justice system, outline areas of concern for youth with CCDs, and describe potential solutions. Results: The application of speech-language pathology services within the juvenile justice system is explained and visually depicted. This framework was informed by intervention models and approaches from international examples. Conclusions: There is an opportunity to embed speech-language pathology services from intake into court action and through disposition for JIY with cognitive-communication impairments. This includes interprofessional education and development, SLPs providing direct intervention, and multidisciplinary screening efforts. Speech-language pathologists as interprofessional advocates and practice partners can improve life chances and outcomes for youth with CCDs in the juvenile justice system.

AbstractObjectiveThis research note describes the relationship between young adults' educational experiences and childbearing goals in the United States.BackgroundIn the United States, education is associated with later childbearing and fewer children, but the relationship between education and fertility desires and intentions is less well‐understood. This article contributes to the research literature by illustrating variation in prospective fertility goals by education, focusing on the early life course in order to understand young adults' goals before they have been shaped by parenting and extensive workforce experiences.MethodThis analysis uses data from the National Surveys of Family Growth (1995–2019), a nationally representative survey, to study fertility desires and intentions among childless US men and women ages 19–24. Predicted probabilities demonstrating differences in fertility goals by educational experiences, from three sets of multivariable analyses (logistic regression predicting fertility desires and intentions, separately, and negative binomial regression predicting intended parity), are shown.ResultsMen and women with a bachelor's degree and those enrolled in college do not have lower fertility goals than those without a degree and not enrolled; if anything, more educated individuals are slightly more likely to desire (for men only) and intend children and to have slightly larger intended family size.ConclusionsEducation gaps in fertility in the United States are not attributable to differences in early‐life fertility goals.

The numbers of foreign-born undergraduates in the United States have increased in the 21st century, yet literature exploring their perceptions of and experiences with campus communities and sense of school belonging is limited. This cross-sectional study includes self-report data from 153 foreign born undergraduates. Data were collected during the first year of the Donald J. Trump Presidential administration, a sensitive socio-historical time period for this population. Correlations between students’ sense of school belonging were calculated using variables related to discrimination and rejection, concerns about deportation, access, importance of campus space, social capital, support, and civic engagement. Analysis of variance were calculated to ascertain group differences based on immigrant status. Results indicate that macro-level sociopolitical contexts impact this population negatively, but colleges and universities may support foreign-born undergraduates by creating and maintaining safe campus spaces for peer-to-peer and peer-to-faculty interactions. Civic engagement and preventive education could be critical for promoting success. Family Science and Family Life Education programming may be particularly useful; this is discussed as implications for practice.

Australian newspapers, in recent years, have increased significantly the column space devoted to obituaries. Style and quality are erratic, however. Syndicated pieces from specialist writers in Britain and the United States appear alongside homespun obituaries submitted for publication by surviving family members or friends. There is an apparent unwillingness, on the part of Australian editors, to encourage the writing of material which speaks critically of the dead. That reticence is at variance with emerging practice overseas, where there is frequently a concerted effort to ‘get nearer the character of the person … to delve behind the curriculum vitae and by Description and anecdote convey what the lamented - or unlamented - one was really like’ (Bowman 1997). This article compares publication styles and policies, and examines (on the basis of the author’s own experience) the challenges inherent in both the exercise and the teaching of the obituary art.

IntroductionPerinatal palliative care (PPC) is a rapidly growing and essential reproductive health care option for pregnant persons with a diagnosed life‐limiting fetal condition who continue their pregnancy. The provision of PPC is within the scope of basic midwifery competencies, and midwives are well‐positioned to make unique and valuable contributions to interprofessional PPC teams. However, little is known about midwives’ past or current involvement in PPC in the United States.MethodsThis scoping review of the literature investigated what is known about the role of midwives in PPC in the United States. Multiple databases of published literature were used for this review: PubMed, CINAHL, Embase, Web of Science, ProQuest, Google Scholar, and relevant citations from identified studies. All types of English language publications addressing midwives’ involvement in PPC in the United States were included, without any limitations on publication date.ResultsThe role and contributions of midwives in PPC is not well represented in existing literature. Of the 259 results identified, 7 publications met criteria for inclusion. These included 5 case reports, one quantitative research article, and one conference abstract. Midwives are involved in PPC through the provision of direct clinical care (including antepartum, intrapartum, postpartum, neonatal, bereavement, postmortem, and follow‐up care) and care planning and coordination as part of an interprofessional team.DiscussionDespite midwives being uniquely positioned to provide holistic, family‐centered, and person‐centered care in situations of pregnancy with life‐limiting fetal conditions, there is limited literature about their involvement in PPC in the United States. PPC should be incorporated into midwifery education and training programs. Midwives should play a central role in shaping future research and policies to ensure the accessibility and quality of PPC.

AbstractThis study examines the integration of older African immigrants in the United States through work, which provides them autonomy in later life. The study utilizes qualitative data from 27 older African immigrants from Sub‐Saharan Africa living in Georgia. The older adults are 55 or older and immigrated to the United States after 1990. The participants are from five countries (Cameroon, Nigeria, the Democratic Republic of Congo, Togo, and Zambia). Their ages range from 55 to 85 years old. There are 18 men and nine women. Six participants had doctoral degrees, nine had master's degrees, six had associate or college degrees, six had vocational training, and some had college, secondary, or primary education or no formal education. Eighteen participants were employed full‐time. I apply thematic analysis to highlight emerging themes. The findings demonstrate the importance of the push and pull factors in determining immigrants' decisions to migrate in later life. Other findings highlight the challenges older adults, especially African immigrants, encounter to remain active and gainfully employed. The challenges include problems of language and accent and the classification of foreign credentials in the job market. The participants expressed the necessity to work because of family and societal obligations or perceived obligations back in their countries of origin, most notably the desire to achieve autonomy in later life. This paper contributes to the literature on the diverse aging population by expounding on the contributions made by older immigrants in the workforce, their families, and society. With the information acquired from older African immigrants, we can continue advancing policies that address the concerns of our diverse aging population. Policies should aim at training that targets older adults from diverse linguistic, educational, and cultural backgrounds. Policies should also lay out clearer pathways to financial independence, including education on the role of social security and other safety net programs for older Americans. Policies must reflect the importance of healthcare in later life, so healthcare policies should address issues on cultural competencies in training healthcare providers and educating older adult immigrants on navigating the healthcare system.

AbstractBackgroundThis paper explores Indigenous understandings of the progression of dementia through the early/mild, middle/moderate, and late/severe stages of dementia through the experience of on‐reservation dementia care providers. There is scant but growing literature on Indigenous understandings of dementia but to our knowledge none have examined how Indigenous conceptualization of the illness stages relate to the biomedical staging categories which dominate dementia education and care models.MethodWe conducted sequential focus groups (SFGs) with the same local health care staff/formal caregivers that work with Indigenous older adults (n = 17) over 4‐5 sessions (n = 14) in four diverse Indigenous reservation communities in USA and Canada. The SFG design provided an opportunity for a progressive and deep discussion of perceptions of early, middle, and late stages of dementia among their Indigenous patients. SFGs were recorded, transcribed, thematically coded and grouped according to the Alzheimer’s Association (AA) definitions of early, middle, and late‐stage dementia.ResultThese data suggest that Indigenous experiences with the stages of dementia do not align with the AA framework. Specifically, early dementia is not widely recognized as an illness or part of the disease trajectory; rather, moderate symptoms in the AA framework are most frequently described as the beginning of dementia. Participant descriptions of symptoms in the middle and late stages were more closely aligned with Indigenous lived experience and beliefs. Significantly, a return to childhood or infancy was widely used to describe late‐stage dementia. Participant discussions revealed that they gave prominence to periods of transitions and the overall experience as opposed to a segmented/staged approach.ConclusionIndigenous dementia illness models may not align with biomedical approaches to disease staging, potentially leading to inappropriate and ineffective clinical conversations and dementia education efforts. For example, while infantilization of elderly individuals is usually advised against by professionals, describing a loved one as returning to an earlier stage of their life aligns with Indigenous teachings of the circle of life. Further ethnographic research is needed with Indigenous family caregivers and persons living with dementia to verify these findings and provide insight into culturally safe care.

Latinas, along with many other minoritized groups, are underrepresented as inventors in the United States. Despite accounting for over 9% of the population, &lt;1% of U.S. patent holders are Latina. In an effort to increase diversity among inventors and patent holders, a number of K-12 programs have been created to provide opportunities for students to participate in the iterative and recursive processes of inventing. One example is the emerging field of invention education. Invention education is an educational approach which teaches students how to identify and solve problems within their communities. Little is known about the experiences of Latina students who have participated in invention education and have begun developing identities as inventors. Through narrative methodology, we analyzed how the life experiences of one Latina student contributed to her identity development as an inventor. Four themes were developed through the analysis of the Latina student’s narrative. The first was the early and consistent support of her family members. The second theme was the student’s understanding of the importance of Latinx representation in STEM. The student’s participation in extracurricular STEM activities was the third theme that contributed to the development of her identity as an inventor. The final theme was her continued involvement in engineering at the university level. While early, consistent, and continued identity work in extracurricular invention and STEM activities contributed to the development of an inventor’s identity, literature has shown that opportunities such as these are not available to all students, especially those who have been historically underrepresented as inventors. We argue for making access to invention education more equitable by embedding it within the school day.

Abstract Objective The 1940 Census is a valuable resource for understanding various aspects of historical populations in the United States. Recently, the National Social Life, Health and Aging Project (NSHAP) integrated 1940 Census data into its extensive dataset, providing researchers with an opportunity to explore new avenues of life course investigation. We leverage the newly-introduced measures of childhood residential environment and evaluate their potential predictive utility in older adult cognitive functioning net of childhood and adulthood characteristics known to be key risk factors for poor cognition. Method We analyzed 777 respondents who were children in 1940 (age&lt;17) that have been linked to the 1940 U.S. Census. We used childhood geographic location, homeownership status, household composition, and parental nativity as predictors. Cognitive function was measured using the Montreal Cognitive Assessment. Results Regression analysis showed that growing up in an urban area was associated with better cognitive function, while being born in the South was linked to poorer cognitive function, even after controlling for childhood health, parental education, educational attainment, stroke, and smoking status. Additionally, childhood multigenerational household was associated with better cognitive function, and childhood family size was associated with poorer cognitive function. However, these associations became statistically insignificant with the inclusion of educational attainment. We did not find homeownership and parental nativity to be associated with cognitive function. Discussion The findings may shed light on the potential long-term effects of childhood circumstances on cognitive aging processes. Implications for current literature and directions for future research are discussed.

Summary The complexities of refugee resettlement are difficult to comprehend, and alternative approaches to education may enhance empathy. Puppetry's art form often engages broad audiences, allowing puppets to tell important stories. This project developed a research-based educational puppet show to increase understanding of refugees in the United States (US). Using a mixed-method approach, this exploratory study (1) interviewed eleven refugees from five origin countries; (2) analyzed the interviews for salient themes; (3) developed a “master” play based on emergent themes; (4) delivered the play through puppetry; and (5) empirically assessed the efficacy of puppetry in disseminating information about refugees. Findings Five overarching themes regarding refugee resettlement emerged from the interviews, namely, (1) economic concerns; (2) language barriers; (3) socio-cultural differences; (4) misperceptions; and (5) altered family dynamics. Almost all 107 respondents who completed a pre- and post-show survey evidenced having gained new knowledge about resettlement in the areas of (i) refugee status; (ii) the arrival process; (iii) economic realities; (iii) adaptation issues; and (iv) refugee perceptions of opportunities in the US. Applications The salient findings of the interviews were consistent with extant literature on refugee resettlement and the 40-min research-based puppet show confirmed that puppetry can be an alternative, or supplementary, training tool. Puppetry brings life to didactic presentations for social workers and other service providers through effective portrayals of difficulties faced by both refugee and host in the adaptation process. It also suggests that puppetry can sensitize and educate practitioners on issues that can be controversial.

Abstract Introduction Reports on past studies about male sexuality, as it compares to women’s, indicate that men have higher sex drives, more positive attitudes toward casual or uncommitted sexual encounters, being more eager to engage in a variety of sexual activities, having more positive emotional responses to intercourse and having higher value regarding sexual experience and activity than women. Although the literature and cultural norms have perpetuated the myth of the sexual male, there is a dearth of literature regarding male virginity, specifically, late life male virginity, and its impacts on psycho-social-sexual health. Objective To investigate the experiences of later in life male virgins and the effects of their sexual status on their psycho-social-sexual health. To provide new insight into late life male virgins' assumptions, feelings, and gender role expectations and their perceptions on how those impact their attainability of sexual interactions and romantic relationships. To increase awareness among clinicians regarding the need for targeted interventions for late life male virgins in clinical practice. Methods This exploratory qualitative research was based on the case studies of five cisgender heterosexual men in the United States of America, who were late life virgins at the time of the study (defined as men 45 years and older, with no previous sexual experiences or interactions with the opposite sex) who sought Sex Therapy and Surrogate Partner Therapy to assist in their objective to acquire social and sexual skills with the goal of having their sexual debut. Results The common themes that stemmed from the case studies revealed that: 1) although the men in the study were able to achieve academic and professional status, they felt flawed and out of the norm due to their virginity status; 2) all the men hid their sexual inexperience from peers and family due to shame and fear of negative consequences to their reputation and even professional loss; and 3) made evident the challenges these men face while navigating social and sexual experiences later in life; 4) underscored the damaging effects of myths, stereotypes and societal expectations around male sexuality; and 5) highlighted the lack of information, education and therapeutic tools that could help guide late life male virgins in their pursuit to exercise their sexuality. Conclusions The study provides a greater understanding of the challenges and issues late life male virgins face in their quest to reach their sexual debut and live satisfactory sex lives that meet their particular needs. The themes offer guidance for the development and implementation of sex therapy interventions that will help this specific cohort, as well as directions for future research. Disclosure No.

ABSTRACT/EXECUTIVE SUMMARY Why a Task Force on the Family? The practice of pediatrics is unique among medical specialties in many ways, among which is the nearly certain presence of a parent when health care services are provided for the patient. Regardless of whether parents or other family members are physically present, their influence is pervasive. Families are the most central and enduring influence in children’s lives. Parents are also central in pediatric care. The health and well-being of children are inextricably linked to their parents’ physical, emotional and social health, social circumstances, and child-rearing practices. The rising incidence of behavior problems among children attests to some families’ inability to cope with the increasing stresses they are experiencing and their need for assistance. When a family’s distress finds its voice in a child’s symptoms, pediatricians are often parents’ first source for help. There is enormous diversity among families—diversity in the composition of families, in their ethnic and racial heritage, in their religious and spiritual orientation, in how they communicate, in the time they spend together, in their commitment to individual family members, in their connections to their community, in their experiences, and in their ability to adapt to stress. Within families, individuals are different from one another as well. Pediatricians are especially sensitive to differences among children—in their temperaments and personalities, in their innate and learned abilities, and in how they view themselves and respond to the world around them. It is remarkable and a testament to the effort of parents and to the resilience of children that most families function well and most children succeed in life. Family life in the United States has been subjected to extensive scrutiny and frequent commentary, yet even when those activities have been informed by research, they tend to be influenced by personal experience within families and by individual and cultural beliefs about how society and family life ought to be. The process of formulating recommendations for pediatric practice, public policy, professional education, and research requires reaching consensus on some core values and principles about family life and family functioning as they affect children, knowing that some philosophic disagreements will remain unresolved. The growing multicultural character of the country will likely heighten awareness of our diversity. Many characteristics of families have changed during the past 3 to 5 decades. Families without children younger than 18 years have increased substantially, and they are now the majority. The average age at marriage has increased, and a greater proportion of births is occurring to women older than 30 years. Between 1970 and 2000, the proportion of children in 2-parent families decreased from 85% to 69%, and more than one quarter (26%) of all children live with a single parent, usually their mother. Most of this change reflects a dramatic increase in the rate of births to unmarried women that went from 5.3% in 1960 to 33.2% in 2000. Another factor in this change is a slowly decreasing but still high divorce rate that is roughly double what it was in the mid-1950s. Family income is strongly related to children’s health, and the financial resources that families have available are closely tied to changes in family structure. Family income in real dollars has trended up for many decades, but the benefits have not been shared equally. For example, the median income of families with married parents has increased by 146% since 1970, but female-headed households have experienced a growth of 131%. More striking is that in 2000, the median income of female-headed households was only 47% of that of married-couple families and only 65% of that of families with 2 married parents in which the wife was not employed. Not surprising, the proportion of children who live in poverty is approximately 5 times greater for female-headed families than for married-couple families. The composition of children’s families and the time parents have for their children affect child rearing. Consequent to the increase in female-headed households, rising economic and personal need, and increased opportunities for women, the proportion of mothers who are in the workforce has climbed steadily over the past several decades. Currently, approximately two thirds of all mothers with children younger than 18 years are employed. Most families with young children depend on child care, and most child care is not of good quality. Reliance on child care involves longer days for children and families, the stress imposed by schedules and created by transitions, exposure to infections, and considerable cost. An increasing number and proportion of parents are also devoting time previously available to their children to the care of their own parents. The so-called “sandwich generation” of parents is being pulled in multiple directions. The amount and use of family time also has changed with a lengthening workday, including the amount of commuting time necessary to travel between work and home, and with the intrusion of television and computers into family life. In public opinion polls, most parents report that they believe it is more difficult to be a parent now than it used to be; people seem to feel more isolated, social and media pressures on and enticements of their children seem greater, and the world seems to be a more dangerous place. Social and public policy has not kept up with these changes, leaving families stretched for time and stressed to cope and meet their responsibilities. What can and what should pediatrics do to help families raise healthy and well-adjusted children? How can individual pediatricians better support families? Family Pediatrics The American Academy of Pediatrics (AAP) Board of Directors appointed the Task Force on the Family to help guide the development of public policy and recommend how to assist pediatricians to promote well-functioning families (see Appendix). The magnitude of the assigned work required task force members to learn a great deal from research and researchers in the fields of social and behavioral sciences. A review of some critical literature was completed by a consultant to the task force and accompanies this report. That review identified a convergence of pediatrics and research on families by other disciplines. The task force found that a great deal is known about family functioning and family circumstances that affect children. With this knowledge, it is possible to provide pediatric care in a way that promotes successful families and good outcomes for children. The task force refers to that type of care as “family-oriented care” or “family pediatrics” and strongly endorses policies and practices that promote the adoption of this 2-generational approach as a hallmark of pediatrics. During the past decade, family advocates have successfully promoted family-centered care, “the philosophies, principles and practices that put the family at the heart or center of services; the family as the driving force.” Most pediatricians report that they involve families in the decision making regarding the health care of their child and make an effort to understand the needs of the family as well as the child. Family pediatrics, like family-centered care, requires an active, productive partnership between the pediatrician and the family. But family pediatrics extends the responsibilities of the pediatrician to include screening, assessment, and referral of parents for physical, emotional, or social problems or health risk behaviors that can adversely affect the health and emotional or social well-being of their child. Family Context of Child Health The power and importance of families to children arises out of the extended duration for which children are dependent on adults to meet their basic needs. Children’s needs for which only a family can provide include social support, socialization, and coping and life skills. Their self-esteem grows from being cared for, loved, and valued and feeling that they are part of a social unit that shares values, communicates openly, and provides companionship. Families transmit and interpret values to their children and often serve as children’s connection to the larger world, especially during the early years of life. Although schools provide formal education, families teach children how to get along in the world. Often, efforts to discuss families and make recommendations regarding practice or policy stumble over disagreements about the definition of a family. The task force recognized the diversity of families and chose not to operate from the position of a fixed definition. Rather, the task force, which was to address pediatrics, decided to frame its deliberations and recommendations around the functions of families and how various aspects of the family context influence child rearing and child health. One model of family functioning that implicitly guided the task force is the family stress model (Fig 1). Stress of various sorts (eg, financial or health problems, lack of social support, unhappiness at work, unfortunate life events) can cause parents emotional distress and cause couples conflict and difficulty with their relationship. These responses to stress then disrupt parenting and the interactions between parent and child and can lead to short-term or lasting poor outcomes. The earlier these events transpire and the longer that the disruption lasts, the worse the outcomes for children. The task force favors efforts to encourage and support marriage yet recognizes that every family constellation can produce good outcomes for children and that none is certain to yield bad ones. Unequivocally, children do best when they are living with 2 mutually committed and loving parents who respect and support one another, who have adequate social and financial resources, and who are actively engaged in the upbringing of their children. Conclusions From its discussions with family experts, its review of research literature, and its own intensive discussions, the task force was able to draw about the American family a limited number of conclusions that are relevant to pediatrics. Two overriding conclusions were apparent. First, children’s outcomes—their physical and emotional health and their cognitive and social functioning—are strongly influenced by how well their families function. Second, there is much that practicing pediatricians can do to help nurture and support families and, thus, promote optimal family functioning and children’s outcomes. Other conclusions were organized into 4 categories: 1) family function and structure, 2) family circumstances, 3) pediatric practice, and 4) policy. Within the first category, there are conclusions about the effect of family structure, values, beliefs, roles, and relationships on child rearing and child outcomes. The second category, family circumstances, summarizes information on the emotional climate within and outside the home that can promote or impede children’s healthy development. Third, to provide appropriate care for children, pediatricians must expand their practices to encompass the assessment of family relationships, health, and behaviors. They must have the skills and comfort to inquire and learn about individual families, address family issues realistically, and link families to support groups and community resources. Pediatricians’ ability to practice family pediatrics is influenced by training, personal experience and orientation, the work environment, and professional relationships. Finally, there is a need to develop policies that support reimbursement of pediatricians for services for families; that acknowledge the importance of marriage, parenting, and families for children; and that set clear expectations for parents while providing opportunities for them to obtain desired support. Recommendations The task force intended that its recommendations follow logically from the conclusions it was able to draw. The scope of family issues that were reviewed and discussed was very wide; consequently, in some cases, the conclusions are broad and the associated recommendations are numerous. The 80 recommendations also were organized into 4 categories to facilitate their consideration by individual physicians and various bodies within the pediatric profession. The first category, education, offers suggestions on family content for resident training and for continuing education for practitioners. It also contains some guidance on priority topics that should be addressed by parent education materials published by the AAP. The second category, policy and advocacy, suggests public policy positions that would support families and promote good child outcomes. It also addresses reimbursement policies, including diagnostic and procedure coding, which could enable pediatricians to practice family pediatrics. Some suggestions for internal AAP policies that would highlight the importance of a family orientation for the organization also are provided. Finally, opportunities are identified for the AAP to promote local and national policies and activities that support and strengthen families through its chapters and its relationships with other professional organizations. The third and most extensive category comprises recommendations about pediatric practice. This category includes suggestions for how pediatricians can modify their practice behaviors to promote good family functioning and effective parenting. Included are recommendations for how pediatricians can help strengthen parental partnerships in different family types, screen for family circumstances that put children at risk, and help create family-friendly practice environments. For additional guidance, some characteristics of a family-friendly pediatrician are listed in the final table of the report. The final category makes recommendations for research that the AAP should encourage or undertake to better enable pediatricians to provide family-oriented care. Areas for research include the mechanics, content, and effectiveness of family-oriented pediatrics practice; public policies and programs that promote family functioning and family-oriented care; and progress toward adopting the principles and content of family pediatrics among health care organizations, insurers, and AAP members. Taken as a whole, the recommendations provide a comprehensive plan for the AAP and pediatricians to assist families to function well and meet the needs of their children. The scope of work that is required is extensive and touches on nearly every aspect of the work done by the organization. It also requires modifications in pediatric practices to accommodate changes in the characteristics and circumstances of families that are served. Next Steps to Ensure Implementation The task force report is only the first step in what needs to be an ongoing process to ensure that children’s health care is effectively provided in the context of their families. Attention to families should become integrated into the work of the AAP. This report should be reviewed and discussed by AAP staff, committees, sections, and members to determine which recommendations apply to their work and to plan strategies for their implementation. A single entity needs to take ongoing responsibility for monitoring and promoting activities related to the task force’s recommendations. These responsibilities should be assigned with high priority to a standing committee of the AAP.

Abstract Background Low strength of maternal-infant relationship (MIR) is consistently associated with early childhood obesity risk. Because obesity often persists once it develops, primary prevention is needed early. Home visiting programs support families with social determinants of health (SDH) and adverse childhood experiences (ACEs); SDH and ACEs contribute to health inequities. Addressing SDH and ACEs may facilitate improvements in MIR and ultimately mitigate early childhood obesity risk. Limited to no research has examined the association between ACEs, SDH, and MIR. In the context of a national, evidence-based home visiting program, we asked: are SDH and ACEs associated with low MIR? Methods This sample includes 6,972 children ages 0–&lt;24 months enrolled in the Parents as Teachers home visiting program across the United States from sites using the Life Skills Progression (LSP) instrument through February 2020. Low MIR is dichotomized from a 1-5 scale, with low scores reflecting low nurturing, bonding, and responsiveness. We used the literature, theory, and a stepwise logistic regression model-building process to identify a parsimonious model for MIR. Results Preliminary results reflect 34.2% Hispanic or Latino, 22.7% non-Hispanic Black, 35.3% non-Hispanic Other race; 83.9% low income; 36.9% low education; and 13.4% mothers scoring low for MIR. Notable findings from modeling include: physical ACEs, captured here as child abuse or neglect (OR: 5.01, 95% CI: 4.10-6.11); mental illness ACEs, captured here as a mother/parent with mental illness (OR: 1.31, 95% CI: 1.05-1.63), or the mother/parent treated violently (OR: 1.95, 95% CI: 1.56-2.40). Protective associations include mothers' support of child development and self-esteem scores. Conclusions Understanding the complex interplay of SDH, ACEs, and MIR is critical for developing interventions that address “upstream” family characteristics in order to mitigate early childhood obesity risk. ACEs play a predominant role. Key messages This is the first known study to concurrently examine maternal-infant relationship, social determinants of health, and adverse childhood experiences. Home visiting programs may be critical partners in addressing these needs given their reach.

Photo by 193001056 © Yee Xin Tan on Dreamstime.com ABSTRACT Suicide and overdose, associated with perinatal mental health conditions, are the leading causes of maternal mortality in the United States. Experts in the field of perinatal mental health are using perinatal mood and anxiety disorders (PMAD) as an umbrella term that includes many mental health conditions and bring to light the lack of screening and treatment for perinatal mental health in the United States. There is a growing need to equip Obstetricians and Gynecologist (OB-GYN) providers with better tools to screen, triage, and refer to mental health services that are equitable and immediately accessible to their patients. Integrating a tech-enabled perinatal collaborative care model with peer-to-peer coaching as the driver of behavior change is a novel approach to addressing the maternal mental health crisis by improving outcomes, reducing disparities, and lowering costs. INTRODUCTION Over the past two decades, maternal mortality and other maternal health outcomes have worsened in the United States disproportionately to those in other developed countries.[1] In 2021, 1,205 pregnant women died in the US, representing a 40 percent increase in maternal death from 2020 and the highest rise in rates since the 1960s.[2] Suicide and overdose associated with perinatal mental health conditions are the leading causes of maternal mortality.[3] Mental health-related deaths are most likely to occur after six weeks postpartum.[4] Despite the postpartum period representing a higher risk for mental health conditions, historically, only a single postpartum visit is performed between 4 and 6 weeks after delivery. 40 percent of women do not attend a postpartum visit.[5] Recent data from Maternal Mortality Review Committees reveal that 80 percent of maternal deaths are preventable. The maternal mental health crisis represents a unique ethical dilemma. For perinatal women, the current healthcare system is unjust. There is a growing need to equip obstetricians and gynecologists (OB-GYNs) with the tools to screen, triage, and refer patients to mental health services that are equitable and immediately accessible to their patients. This paper will analyze the current state of perinatal mental healthcare in America. It will introduce the Psychiatric Collaborative Care Model and demonstrate its effectiveness. I highlight research performed using the Psychiatric Collaborative Care Model in obstetrics as well as barriers to real-world implementation. Lastly, this paper will argue that the integration of a tech-enabled perinatal collaborative care model with peer-to-peer coaching as the driver of behavior change would improve outcomes, reduce disparities, and lower costs. I. Scope of the Problem Prior to the COVID-19 pandemic, the prevalence of postpartum depression ranged from 13.2 percent, to as high as 23.5 percent, of births in the US.[6] The COVID-19 pandemic has exacerbated this issue, with studies revealing up to 1 in 3 postpartum women experiencing postpartum depression.[7] Although postpartum depression has been the focus of perinatal mental health conditions, it is just the tip of the iceberg. Experts in the field of perinatal mental health are now using perinatal mood and anxiety disorders as an umbrella term that includes perinatal depression, anxiety, obsessive-compulsive disorder, post-traumatic stress disorder, bipolar disorder, and psychosis from the prenatal period through the first year postpartum. Socio-economically disadvantaged women are at increased risk of experiencing perinatal mood and anxiety disorders and face greater barriers to high-quality mental health care.[8] The American College of Obstetricians and Gynecologists (ACOG) recommends that physicians perform postpartum depression screenings during pregnancy. The Health Resources and Services Administration provides Healthy Start Initiative Grants to communities with high rates of adverse perinatal outcomes. Yet, the Healthcare Effectiveness Data and Information Set (HEDIS) reveals that screening in both pregnancy and the postpartum period occurs in fewer than 20 percent of patients.[9] Furthermore, in the US, if screening does occur, only 22 percent of women who are deemed positive in their screening receive mental health care.[10] The United States is currently experiencing a shortage of mental health providers that is expected to worsen in the upcoming years.[11] Nearly half of all Americans currently live in a mental health professional desert.[12] Waitlists for therapists and psychiatrists average 48 days, and individuals report not seeking mental health care due to cost or lack of insurance coverage.[13] Given the significant mental health provider shortage, obstetric providers have a unique opportunity to care for the “whole patient” during and after pregnancy by addressing not only their physical health but also their mental health. Approximately one-third of women consider their OB-GYN their primary care provider during and after pregnancy, and over 50 percent of OB-GYNs perceive themselves as primary care providers for women, supporting primary, specialty, and preventive care.[14] Medicaid covers 42 percent of all births in the US, and more than half of all births in some states, thus OB-GYNs provide a disproportionate amount of care for poor and minority women as compared to other specialties.[15] Yet, OB-GYN providers commonly feel hesitant to screen for depression due to the shortage of therapists and psychiatrists to address the mental health needs of their patients, particularly in the Medicaid population.[16] As a result, fewer than 10 percent of pregnant women with mental health conditions receive adequate treatment.[17] A recent study of 288 obstetrics fellows revealed that 84 percent prescribed SSRIs to their patients; obstetricians are filling the mental health provider gap and taking ownership over their patients’ mental health.[18] Despite ACOG’s recommendations that obstetrics providers screen for and treat mental health conditions in the perinatal period, OB-GYNs do not receive formal mental health training during residency or fellowship and do not typically use validated tools such as the Diagnostic and Statistical Manual of Mental Disorders-Forth Edition (DSM-IV) for diagnosis of depression or prior to prescribing antidepressants. Their lack of a standard reference can lead to misdiagnoses.[19] In fact, 22 percent of women screened and found to have postpartum depression are later diagnosed with bipolar disorder.[20] Screening and treatment for perinatal mood and anxiety disorders are further impacted by patients’ lack of trust in healthcare providers. Distrust between patients, particularly those receiving Medicaid, and their OB-GYNs in the US is high and strongly associated with worse self-reported health outcomes.[21] Notably, women with Medicaid coverage reported being treated unfairly and with disrespect by providers because of their race and insurance status. They reported a loss of decision-making autonomy during labor and delivery and less postpartum emotional and practical support at home.[22] Many women do not feel comfortable discussing mental disorders with a healthcare provider.[23] Connecting perinatal women to a person with shared lived experiences, known as peer-to-peer engagement or coaching, may be a simple solution. II. Collaborative Care Model The Psychiatric Collaborative Care Model (collaborative care), developed by the University of Washington in 2002, is an integrated behavioral health approach designed to treat common mental health conditions such as depression and anxiety that require measurement-based follow-up due to their chronic nature.[24] Centers for Medicare and Medicaid Services issued billing codes for the Psychiatric Collaborative Care Model in 2016. Medicare adopted them in 2017, and they were widely operationalized in the primary care field.[25] As of 2022, the collaborative care billing codes have been adopted by 19 state Medicaid plans.[26] The collaborative care model facilitates the integration of a behavioral health care manager, typically a licensed therapist or care worker, in the primary care setting. The behavioral health care manager can provide in-person or virtual care and facilitate mental health screenings, symptom monitoring, psychiatric consultations, and care coordination.[27] A psychiatric consultant, typically a board-certified psychiatrist or psychiatric nurse practitioner, is an integrated behavioral health provider on the collaborative care team. Psychiatric consultants do not see patients one on one. Rather, they review complex or treatment-resistant cases and provide psychiatric management recommendations to the primary provider. Thus, the primary care team is expanded by two members who provide behavioral health expertise to the primary care provider, who is ultimately the prescribing provider if any psychoactive medications are indicated.[28] This model has been tested in over 90 randomized clinical trials evaluating efficacy for the treatment of depression and anxiety across multiple medical specialties.[29] Data from the primary care setting indicate that this integrated behavioral health approach is both successful and more cost-effective than usual care for patients with behavioral health conditions.[30] Studies show that the collaborative care model improves clinical outcomes and lowers costs, returning $6.50 for every dollar spent on treatment of depression. Furthermore, the model is effective across diverse patient populations.[31] III. Evidence for Collaborative Care in Obstetrics The success of the collaborative care model for identifying anxiety and depression in the primary care setting and its potential for cost savings suggest that implementation of perinatal collaborative care for perinatal mood and anxiety disorders is a feasible approach.[32] Randomized clinical trials showed significant improvement in quality care, depression severity, and remission rates from before birth to 18 months postbaseline for socioeconomically disadvantaged women.[33] In addition, collaborative care is associated with mitigating racial disparities in antenatal depression care; it may be an equity-promoting intervention for maternal health.[34] The trials faced limitations, including the inability to establish causality, and the researchers recommended further research. Although further research is warranted, the collaborative care model in obstetrics programs has indicated improved depression outcomes. IV. Barriers to Adoption of a Collaborative Care Model in Obstetrics Despite promising results, implementation is limited, and collaborative care is billable under Medicaid in only 19 states.[35] Large health systems have difficulty operationalizing a collaborative care model in obstetrics due to implementation costs, mental health provider shortages, and administrative burdens. More evidence of financial benefits to obstetrics clinics, hospitals, and health systems is needed. Additionally, obstetric practices must adapt to updated care plans, and obstetricians must be motivated to become involved in behavioral health issues and potentially broaden their scope of practice.[36] As this is a major ask from practices and providers, robust evidence is lacking to show that a perinatal collaborative care model can be applied without the resources and infrastructure of a randomized trial. V. Peer-to-Peer Engagement Peer support in healthcare is growing. Peer support is defined as help and support that people with lived experiences can give one another.[37] Effective examples of peer support or engagement are found in addiction, mental health services, and the workforce. Regarding addiction recovery support, a systematic review concluded that peer support interventions have a beneficial effect on participants and positively contribute to substance use outcomes.[38] Peer support is highly used in medicine and other professions when attending physicians or skilled professionals train new colleagues. The nursing profession uses peer support to help deliver quality care and reduce symptoms of burnout.[39] Peer support has been well described in literature, and programs differ in their methodology and delivery. The feasibility and maintenance of peer support programs are possible through collaboration with all healthcare stakeholders.[40] Understanding that shared experiences establish a foundation of trust may help obstetricians see peers as a way to bridge the gap. A peer coach may be valuable in the collaborative care model. VI. Integrating Peer-to-Peer into the Collaborative Care Model for Obstetrics Currently, a start-up based in Boston and Philadelphia, FamilyWell, has piloted tech-enabled peer-to-peer engagement into a collaborative care model for obstetric patients. The company strives to solve the perinatal mental health crisis and close the health equity gap in the US by applying a text messaging platform to connect expecting and newly postpartum mothers with peer coaches. Peer coaches are trained to support perinatal mothers, defined as third-trimester pregnancy through 12 months postpartum, by providing quality support based on the latest research. Coaches have their own unique birth and postpartum stories, making them relatable and equipped to support mothers through the ups and downs of parenthood.[41] Increased education, screening, and treatment for perinatal mood and anxiety disorders co-occur as connections are being made through texting and virtual visits with coaches. On demand texting with coaches ensures no mother feels alone and that mothers have a safe space to ask questions and process emotions. If needed, enrolled moms can request longer virtual coaching sessions of 50 minutes with certified perinatal mental health coaches, who focus on current issues and how to move forward and feel better, accomplished through cognitive behavioral coaching techniques.[42] The platform schedules automated text messages containing educational content. Individual care plans are developed in collaboration with an individual’s OB and include monthly mental health screenings during and post-pregnancy. Notably, at three-week postpartum, participants are sent the Edinburg postnatal depression scale 3 (EPDS-3) questions via text messages.[43] This screening is three weeks prior to the national six-weeks postpartum screening recommendation and focuses on antepartum anxiety, which represents a risk factor for depression.[44] If an individual needs more mental health support compared to coaching, virtual therapy sessions are available through the platform, giving access to licensed therapist, specializing in perinatal mental health without extensive waitlist. Therapists can diagnosis and provide medication management if needed. FamilyWell CEO and founder, Jessica Gaulton, revealed that preliminary data collected during the first two months of the company’s launch, limited to the Philadelphia, PA region and three clinics, indicated that 24 postpartum mothers consented to the program. A total of 3,000 texts were exchanged, and 44.2 percent of those texts came from participants to peer coaches.[45] The platform expediates appropriate referrals, creates individualized maternal wellness treatment plans, and serves as a resource for navigating the medical system. VII. Providing Justice in the Maternal Healthcare System The well-being of mothers is a bellwether for the well-being of society; every injustice in our society shows up in maternal health.[46] Earlier, broader, and more frequent screening combined with direct mental health access is essential to address perinatal mood and anxiety disorders and ultimately the maternal mortality rate. Integrating collaborative care with peer-to-peer coaching provides new mothers with direct support and follow-up care. This simple yet novel integration begins to close the gap by providing equitable care. The tech-based platform’s research and success highlight that a broader focus on screening is critical. Limiting mental illness to depression fails to serve women adequately. Expanding criteria to screen for indicators of future depression, such as anxiety, is a simple, proactive step. A relatable peer may be a critical factor in helping perinatal women feel comfortable openly discussing problems they are facing and beginning conversations not otherwise occurring in a perinatal or postpartum visit. Companies like FamilyWell can contribute to making collaborative care feasible in the OB-GYN setting. Having an outside organization with peer-coaches building a foundation of trust and championing the collaborative care model reduces the burden for overworked obstetricians. Furthermore, the tech-based platform can organize and facilitate interprofessional communications, which rarely take place in the current system.[47] The texting and telehealth approach brings compassion, care, and more frequent contact directly to the patient, which is critical for socioeconomically disadvantaged women as they are the demographic not properly accessing care now. As the coaches and behavior care coordinator make the referrals for mental health services that align with a mother’s insurance coverage, they reduce stress for new mothers who might not know where to begin when navigating the mental health care system. Additionally, obstetricians may feel more comfortable performing mental health screenings knowing their patients can access mental health care. CONCLUSION The perinatal mental health crisis is significant. Women are currently experiencing injustice in the healthcare system due to a lack of trust, screening, and effective, accessible care. The psychiatric collaborative care model has been proven effective in the primary care setting, and randomized clinical trials conclude it is also effective in obstetrics, but barriers exist. Integrating peer-to-peer coaching through a tech-enabled platform into obstetrics collaborative care may eliminate barriers and build trust between patients and the healthcare system. More research is needed to show the efficacy of a tech-enabled model, and more research is critical to demonstrate that this model can be financially sustainable and revenue-generating for hospitals and obstetrics departments. However, this simple novel step may begin to generate equitable care for women and potentially save lives. - [1] Collier, A. R. Y., & Molina, R. L. (2019). Maternal mortality in the United States: updates on trends, causes, and solutions. Neoreviews, 20(10), e561-e574. [2] Hoyert, D. L. (2023). Maternal Mortality Rates in the United States, 2021.Health E-Stats. National Center for Health Statistics. Centers for Disease Control. https://dx.doi.org/10.15620/cdc:124678 [3] Miller, E. S., Grobman, W. A., Ciolino, J. D., Zumpf, K., Sakowicz, A., Gollan, J., & Wisner, K. L. (2021). Increased depression screening and treatment recommendations after implementation of a perinatal collaborative care program. Psychiatric Services, 72(11), 1268-1275. [4] Trost, S. L., Beauregard, J. L., Smoots, A. N., Ko, J. Y., Haight, S. C., Moore Simas, T. A., ... & Goodman, D. (2021). Preventing Pregnancy-Related Mental Health Deaths: Insights From 14 US Maternal Mortality Review Committees, 2008–17: Study examines maternal mortality and mental health. Health Affairs, 40(10), 1551-1559. [5] Blenning, C. E., & Paladine, H. L. (2005). An approach to the postpartum office visit. American Family Physician, 72(12), 2491-2496; ACOG Committee Opinion No. 736: Optimizing Postpartum Care. Obstetrics and gynecology, 132(3), 784–785. https://doi.org/10.1097/AOG.0000000000002849 [6]Bauman, B. L., Ko, J. Y., Cox, S., D'Angelo Mph, D. V., Warner, L., Folger, S., Tevendale, H. D., Coy, K. C., Harrison, L., & Barfield, W. D. (2020). Vital Signs: Postpartum Depressive Symptoms and Provider Discussions About Perinatal Depression - United States, 2018. MMWR. Morbidity and mortality weekly report, 69(19), 575–581. https://doi.org/10.15585/mmwr.mm6919a2 [7] Shuman, C.J., Peahl, A.F., Pareddy, N. (2022) Postpartum depression and associated risk factors during the COVID-19 pandemic. BMC Res Notes 15, 102. https://doi.org/10.1186/s13104-022-05991-8 [8] Grote, N. K., Katon, W. J., Russo, J. E., Lohr, M. J., Curran, M., Galvin, E., & Carson, K. (2015). Collaborative care for perinatal depression in socioeconomically disadvantaged women: a randomized trial. Depression and Anxiety, 32(11), 821-834. [9] HESI Annual Report. HESI. (2022, November). Retrieved April 30, 2023, from Special-Report-Nov-2022-Results-for-Measures-Leveraging-Electronic-Clinical-Data-for-HEDIS.pdf (ncqa.org) [10] Byatt, N., Levin, L. L., Ziedonis, D., Moore Simas, T. A., & Allison, J. (2015). Enhancing Participation in Depression Care in Outpatient Perinatal Care Settings: A Systematic Review. Obstetrics and Gynecology, 126(5), 1048–1058. https://doi.org/10.1097/AOG.0000000000001067 [11] Satiani, A., Niedermier, J., Satiani, B., & Svendsen, D. P. (2018). Projected Workforce of Psychiatrists in the United States: A Population Analysis. Psychiatric Services (Washington, D.C.), 69(6), 710–713. https://doi.org/10.1176/appi.ps.201700344 [12] Bureau of Health Workforce Health Resources and Services Administration (HRSA) U.S. Department of Health & Human Services. (April 27, 2023) Designated Health Professional Shortage Areas Statistics, Second Quarter of Fiscal Year 2023 Designated HPSA Quarterly Summary. https://data.hrsa.gov/Default/GenerateHPSAQuarterlyReport [13] Coward, K. (2021). New data shows CCBHCs improve behavioral health access, reduce wait times. Behavioral Health Business. https://bhbusiness.com/2021/05/25/new-data-shows-ccbhcs-improve-behavioral-health-access-reduce-wait-times; The United States Government. (2022, June 17). Reducing the economic burden of unmet mental health needs - CEA. The White House. Retrieved April 30, 2023, from https://www.whitehouse.gov/cea/written-materials/2022/05/31/reducing-the-economic-burden-of-unmet-mental-health-needs/ [14] LaRocco-Cockburn, A., Reed, S. D., Melville, J., Croicu, C., Russo, J. E., Inspektor, M., ... & Katon, W. (2013). Improving depression treatment for women: integrating a collaborative care depression intervention into OB-GYN care. Contemporary clinical trials, 36(2), 362-370. [15] Raney, L. (2020). Cracking the codes: State Medicaid approaches to reimbursing psychiatric collaborative care. Oakland, California Health Care Foundation. [16] Hansen, M. E. D., Tobón, A. L., Haider, U. K., Simas, T. A. M., Newsome, M., Finelli, J., ... & Byatt, N. (2023). The role of perinatal psychiatry access programs in advancing mental health equity. General Hospital Psychiatry. [17] Cox, E. Q., Sowa, N. A., Meltzer-Brody, S. E., & Gaynes, B. N. (2016). The perinatal depression treatment cascade: baby steps toward improving outcomes. The Journal of clinical psychiatry, 77(9), 20901. [18] Taouk, L. H., Matteson, K. A., Stark, L. M., & Schulkin, J. (2018). Prenatal depression screening and antidepressant prescription: obstetrician-gynecologists' practices, opinions, and interpretation of evidence. Archives of women's mental health, 21(1), 85–91. https://doi.org/10.1007/s00737-017-0760-7 [19] Garbarino, A. H., Kohn, J. R., Coverdale, J. H., & Kilpatrick, C. C. (2019). Current Trends in Psychiatric Education Among Obstetrics and Gynecology Residency Programs. Academic psychiatry: the journal of the American Association of Directors of Psychiatric Residency Training and the Association for Academic Psychiatry, 43(3), 294–299. https://doi.org/10.1007/s40596-019-01018-w ; [20] Wisner, K. L., Sit, D. K., McShea, M. C., Rizzo, D. M., Zoretich, R. A., Hughes, C. L.,& Hanusa, B. H. (2013). Onset timing, thoughts of self-harm, and diagnoses in postpartum women with screen-positive depression findings. JAMA psychiatry, 70(5), 490-498 [21] Armstrong, K., Rose, A., Peters, N., Long, J. A., McMurphy, S., & Shea, J. A. (2006). Distrust of the health care system and self-reported health in the United States. Journal of general internal medicine, 21(4), 292–297. https://doi.org/10.1111/j.1525-1497.2006.00396.x [22] Declercq, E., & Zephyrin, L. (2020). Maternal mortality in the United States: A Primer. Commonwealth Fund. https://www.commonwealthfund.org/publications/issue-brief-report/2020/dec/maternal-mortality-united-states-primer [23] Scholle, S. H., & Kelleher, K. (2003). Preferences for depression advice among low-income women. Maternal and child health journal, 7(2), 95–102. https://doi.org/10.1023/a:1023864810207https://doi.org/10.1023/a:1023864810207 [24] AIMS Center. (n.d.). Collaborative care. https://aims.uw.edu/collaborative-care [25] Press, M. J., Howe, R., Schoenbaum, M., Cavanaugh, S., Marshall, A., Baldwin, L., & Conway, P. H. (2017). Medicare payment for behavioral health integration. n Engl j Med, 376(5), 405-407. [26] Chang, D., Morrison, D. J., Bowen, D. J., Harris, H. M., Dusic, E. J., Velasquez, M. B., & Ratzliff, A. D. H. (2023). Making It to Sustainability: Evaluating Billing Strategies for Collaborative Care. Psychiatric services (Washington, D.C.), appips20220596. Advance online publication. https://doi.org/10.1176/appi.ps.20220596 [27] Miller, E. S., Jensen, R., Hoffman, M. C., Osborne, L. M., McEvoy, K., Grote, N., & Moses-Kolko, E. L. (2020). Implementation of perinatal collaborative care: a health services approach to perinatal depression care. Primary health care research & development, 21, e30. [28] Raney, L. (2020). Cracking the codes: State Medicaid approaches to reimbursing psychiatric collaborative care. Oakland, California Health Care Foundation. [29] Unützer, J., Katon, W., Callahan, C. M., Williams, J. W., Jr, Hunkeler, E., Harpole, L., Hoffing, M., Della Penna, R. D., Noël, P. H., Lin, E. H., Areán, P. A., Hegel, M. T., Tang, L., Belin, T. R., Oishi, S., Langston, C., & IMPACT Investigators. Improving Mood-Promoting Access to Collaborative Treatment (2002). Collaborative care management of late-life depression in the primary care setting: a randomized controlled trial. JAMA, 288(22), 2836–2845. https://doi.org/10.1001/jama.288.22.2836 [30] Raney, L. (2020). [31] Unützer, J., Harbin, H., Schoenbaum, M., & Druss, B. (2013). The collaborative care model: An approach for integrating physical and mental health care in Medicaid health homes. Health Home Information Resource Center, 1-13. [32] Raney, L. (2020). Cracking the codes: State Medicaid approaches to reimbursing psychiatric collaborative care. Oakland, California Health Care Foundation. [33] Grote, N. K., Katon, W. J., Russo, J. E., Lohr, M. J., Curran, M., Galvin, E., & Carson, K. (2015). Collaborative care for perinatal depression in socioeconomically disadvantaged women: a randomized trial. Depression and anxiety, 32(11), 821-834 [34] Miller, E. S., Grobman, W. A., Ciolino, J. D., Zumpf, K., Sakowicz, A., Gollan, J., & Wisner, K. L. (2021). Increased depression screening and treatment recommendations after implementation of a perinatal collaborative care program. Psychiatric Services, 72(11), 1268-1275; Snowber, K., Ciolino, J. D., Clark, C. T., Grobman, W. A., & Miller, E. S. (2022). Associations Between Implementation of the Collaborative Care Model and Disparities in Perinatal Depression Care. Obstetrics & Gynecology, 140(2), 204-211. [35] Percent of People Covered By Medicaid/CHIP, 2022. (2022). Medicaid State Fact Sheets. KFF. Retrieved May 1, 2023, from https://www.kff.org/interactive/medicaid-state-fact-sheets/ [36] Miller, E. S., Grobman, W. A., Ciolino, J. D., Zumpf, K., Sakowicz, A., Gollan, J., & Wisner, K. L. (2021). Increased depression screening and treatment recommendations after implementation of a perinatal collaborative care program. Psychiatric Services, 72(11), 1268-1275. [37] Shalaby, R. A. H., & Agyapong, V. I. (2020). Peer support in mental health: literature review. JMIR mental health, 7(6), e15572. [38] Bassuk, E. L., Hanson, J., Greene, R. N., Richard, M., & Laudet, A. (2016). Peer-delivered recovery support services for addictions in the United States: A systematic review. Journal of substance abuse treatment, 63, 1-9. [39] Eastburg, M. C., Williamson, M., Gorsuch, R., & Ridley, C. (1994). Social support, personality, and burnout in nurses. Journal of Applied Social Psychology, 24(14), 1233-1250. [41] FamilyWell. (2023.). https://familywellhealth.com/ [42] Patients, Family Well (2023). https://familywellhealth.com/patients [43] Providers, Family Well (2023). https://familywellhealth.com/providers [44] Patients, Family Well (2023). https://familywellhealth.com/patients [45] Author interview with Jessica Gaulton, FamilyWell. (2023) [46] Maven (2022). “If moms are unwell, society is unwell.” Recapping our Q&A with Dr. Neel Shah. Maven. https://www.mavenclinic.com/post/if-moms-are-unwell-society-is-unwell-recapping-our-q-a-with-dr-neel-shah#! [47] Klatter, C. K., van Ravesteyn, L. M., & Stekelenburg, J. (2022). Is collaborative care a key component for treating pregnant women with psychiatric symptoms (and additional psychosocial problems)? A systematic review. Archives of Women's Mental Health, 25(6), 1029-1039.

Sharing this article, the act of writing and then having it read, legitimises the point of it – that is, we (and we speak on behalf of each other here) managed to negotiate western academic expectations and norms from a just-as-legitimate-but-not-always-heard female Buginese perspective written in Standard Australian English (not my first choice-of-language and I speak on behalf of myself). At times we transgressed roles, guiding and following each other through different academic, cultural, social, and linguistic domains until we stumbled upon ways of legitimating our entanglement of experiences, when we heard the similar, faint, drum beat across boundaries and journeys.This article is one storying of the results of this four year relationship between a Buginese PhD candidate and an Indigenous Australian supervisor – both in the writing of the article and the processes that we are writing about. This is our process of knowing and validating knowledge through sharing, collaboration and cultural exchange. Neither the successful PhD thesis nor this article draw from authoethnography but they are outcomes of a lived, research standpoint that fiercely fought to centre a Muslim-Buginese perspective as much as possible, due to the nature of a postgraduate program. In the effort to find a way to not privilege Western ways of knowing to the detriment of my standpoint and position, we had to find a way to at times privilege my way of knowing the world alongside a Western one. There had to be a beat that transgressed cultural and linguistic differences and that allowed for a legitimised dialogic, intersubjective dance.The PhD research focused on potential dialogue between Australian culture and Buginese culture in terms of feminism and its resulting cultural hybridity where some Australian feminist thoughts are applicable to Buginese culture but some are not. Therefore, the PhD study centred a Buginese standpoint while moving back and forth amongst Australian feminist discourses and the dominant expectations of a western academic process. The PhD research was part of a greater Indonesian tertiary movement to include, study, challenge and extend feminist literary programs and how this could be respectfully and culturally appropriately achieved. This article is written by both of us but the core knowledge comes from a Buginese standpoint, that is, the principal supervisor learned from the PhD candidate and then applied her understanding of Indigenous standpoint theory, Tuhiwahi Smith’s decolonising methodologies and Spivakian self-reflexivity to aid the candidate’s development of her dancing methodology. For this reason, the rest of this article is written from the first-person perspective of Dr Abbas.The PhD study was a literary analysis on five stories from Helen Garner’s Postcards from Surfers (1985). My work translated these five stories from English into Indonesian and discussed some challenges that occurred in the process of translation. By using Edward Said’s work on contrapuntal reading and Robert Warrior’s metaphor of the subaltern dancing, I, the embodied learner and the cultural translator, moved back and forth between Buginese culture and Australian culture to consider how Australian women and men are represented and how mainstream Australian society engages with, or challenges, discourses of patriarchy and power. This movement back and forth was theorised as ‘dancing’. Ultimately, another dance was performed at the end of the thesis waltz between the work which centred my Buginese standpoint and academia as a Western tertiary institution.I have been dancing with Australian feminism for over four years. My use of the word ‘dancing’ signified my challenge to articulate and engage with Australian culture, literature, and feminism by viewing it from a Buginese perspective as opposed to a ‘Non-Western’ perspective. As a Buginese woman and scholar, I centred my specific cultural standpoints instead of accepting them generally and therefore dismissed the altering label of ‘Non-Western’. Juxtaposing Australian feminism with Buginese culture was not easy. However, as my research progressed I saw interesting cultural differences between Australian and Buginese cultures that could result in a hybridized way of engaging feminist issues. At times, my cultural standpoint took the lead in directing the research or the point, at other times a Western beat was more prominent, for example, using the English language to voice my work.The Buginese, also known as the Bugis, along with the Makassar, the Mandar, and the Toraja, are one of the four main ethnic groups of the province of South Sulawesi in Indonesia. The population of the Buginese in South Sulawesi spreads into major states (Bone, Wajo, Soppeng, and Sidenreng) and some minor states (Pare-Pare, Suppa, and Sinjai). Like other ethnic groups living in other islands of Indonesia such as the Javanese, the Sundanese, the Minang, the Batak, the Balinese, and the Ambonese, the Buginese have their own culture and traditions. The Buginese, especially those who live in the villages, are still bounded strictly by ade’ (custom) or pangadereng (customary law). This concept of ade’ provides living guidelines for Buginese and consists of five components including ade’, bicara, rapang, wari’, and sara’. Pelras clarifies that pangadereng is ‘adat-hood’, a corpus of interlinked ruling principles which, besides ade’ (custom), includes also bicara (jurisprudence), rapang (models of good behaviour which ensure the proper functioning of society), wari’ (rules of descent and hierarchy) and sara’ (Islamic law and institution, derived from the Arabic shari’a) (190). So, pangadereng is an overall norm which includes advice on how Buginese should behave towards fellow human beings and social institutions on a reciprocal basis. In addition, the Buginese together with Makassarese, mind what is called siri’ (honour and shame), that is the sense of honour and shame. In the life of the Buginese-Makassar people, the most basic element is siri’. For them, no other value merits to be more detected and preserved. Siri’ is their life, their self-respect and their dignity. This is why, in order to uphold and to defend it when it has been stained or they consider it has been stained by somebody, the Bugis-Makassar people are ready to sacrifice everything, including their most precious life, for the sake of its restoration. So goes the saying.... ‘When one’s honour is at stake, without any afterthought one fights’ (Pelras 206).Buginese is one of Indonesia’s ethnic groups where men and women are intended to perform equal roles in society, especially those who live in the Buginese states of South Sulawesi where they are still bound strictly by ade’ (custom) or pangadereng (customary law). These two basic concepts are guidelines for daily life, both in the family and the work place. Buginese also praise what is called siri’, a sense of honour and shame. It is because of this sense of honour and shame that we have a saying, siri’ emmi ri onroang ri lino (people live only for siri’) which means one lives only for honour and prestige. Siri’ had to remain a guiding principle in my theoretical and methodological approach to my PhD research. It is also a guiding principle in the resulting pedagogical praxis that this work has established for my course in Australian culture and literature at Hasanuddin University. I was not prepared to compromise my own ethical and cultural identity and position yet will admit, at times, I felt pressured to do so if I was going to be seen to be performing legitimate scholarly work. Novera argues that:Little research has focused specifically on the adjustment of Indonesian students in Australia. Hasanah (1997) and Philips (1994) note that Indonesian students encounter difficulties in fulfilling certain Western academic requirements, particularly in relation to critical thinking. These studies do not explore the broad range of academic and social problems. Yet this is a fruitful area for research, not just because of the importance of Indonesian students to Australia, and the importance of the Australia-Indonesia relationship to both neighbouring nations, but also because adjustment problems are magnified by cultural differences. There are clear differences between Indonesian and Australian cultures, so that a study of Indonesian students in Australia might also be of broader academic interest […]Studies of international student adjustment discuss a range of problems, including the pressures created by new role and behavioural expectations, language difficulties, financial problems, social difficulties, homesickness, difficulties in dealing with university and other authorities, academic difficulties, and lack of assertiveness inside and outside the classroom. (467)While both my supervisor and I would agree that I faced all of these obstacles during my PhD candidature, this article is focusing solely on the battle to present my methodology, a dialogic encounter between Buginese feminism and mainstream Australian culture using Helen Garner’s short stories, to a Western process and have it be “legitimised”. Endang writes that short stories are becoming more popular in the industrial era in Indonesia and they have become vehicles for writers to articulate the realities of social life such as poverty, marginalization, and unfairness (141-144). In addition, Noor states that the short story has become a new literary form particularly effective for assisting writers in their goal to help the marginalized because its shortness can function as a weapon to directly “scoop up” the targeted issues and “knock them out at a blow” (Endang 144-145). Indeed, Helen Garner uses short stories in a way similar to that described by Endang: as a defiant act towards the government and current circumstances (145). My study of Helen Garner’s short stories explored the way her stories engage with and resist gender relations and inequality between men and women in Australian society through four themes prevalent in the narratives: the kitchen, landscape, language, and sexuality. I wrote my thesis in standard Australian English and I complied with expected forms, formatting, referencing, structuring etc. My thesis also included the Buginese translations of some of Garner’s work. However, the theoretical approaches that informed my analysis cannot be separated from the personal. In the title, I use the term ‘dancing’ to indicate a dialogue with white Australian women by moving back and forth between Australian culture and Buginese culture. I use the term ‘dancing’ as an extension of Edward Said’s work on contrapuntal reading but employ it as a signifier of my movement between insider and outsider (of Australian feminism), that is, I extend it from just a literary reading to a whole body experience. According to Ashcroft and Ahluwalia, the “essence of Said’s argument is to know something is to have power over it, and conversely, to have power is to know the world in your own terms” (83). Ashcroft and Ahluwalia add how through music, particularly the work of pianist Glenn Gould, Said formulated a way of reading imperial and postcolonial texts contrapuntally. Such a reading acknowledges the hybridity of cultures, histories and literatures, allowing the reader to move back and forth between an internal and an external standpoint of cultural references and attitudes in “an effort to draw out, extend, give emphasis and voice to what is silent or marginally present or ideologically represented” (Said 66). While theorising about the potential dance between Australian and Buginese feminisms in my work, I was living the dance in my day-to-day Australian university experience. Trying to accommodate the expected requirements of a PhD thesis, while at the same time ensuring that I maintained my own personal, cultural and professional dignity, that is ade’, and siri’, required some fancy footwork. Siri’ is central to my Buginese worldview and had to be positioned as such in my PhD thesis. Also, the realities that women are still marginalized and that gender inequality and disparities persist in Indonesian society become a motivation to carry out my PhD study. The opportunity to study Australian culture and literature in that country, allowed me to increase my global and local complexity as an individual, what Pieterse refers to as “ a process of hybridization” and to become as Beck terms an “actor” and “manager’’ of my life (as cited in Edmunds 1). Gaining greater autonomy and reconceptualising both masculinity and femininity, while dominant themes in Garner’s work, are also issues I address in my personal and professional goals. In other words, this study resulted in hybridized knowledge of Australian concepts of feminism and Buginese societies that offers a reference for students to understand and engage with different feminist thought. By learning how feminism is understood differently by Australians and Buginese, my Indonesian students can decide what aspects of feminist ideas from a Western perspective can be applied to Buginese culture without transgressing Buginese customs and habits.There are few Australian literary works that have been translated into Indonesian. Those that have include Peter Carey’s True History of the Kelly Gang (2007) and My Life is a Fake (2009), James Vance Marshall’s Walkabout (1957), Emma Darcy’s The Billionaire Bridegroom (2010) , Sally Morgan’s My Place (1987), and Colleen McCullogh’s The Thorn Birds (1978). My translation of five short stories from Postcards from Surfers complemented these works and enriched the diversity of Indonesian translations of world literary works, the bulk of which tends to come from the United Kingdom, America, the Middle East, and Japan. However, actually getting through the process of PhD research followed by examination required my supervisor and I to negotiate cross-cultural terrain, academic agendas and Western expectations of what legitimate thesis writing should look like. Employing Said’s contrapuntal pedagogy and Warrior’s notion of subaltern dancing became my illegitimate methodological frame.Said points out that contrapuntal analysis means that students and teachers can cross-culturally “elucidate a complex and uneven topography” (318). He adds that “we must be able to think through and interpret together experiences that are discrepant, each with its particular agenda and pace of development, its own internal formations, its internal coherence and system of external relationships, all of them co-existing and interacting with others” (32). Contrapuntal is a metaphor Said derived from musical theory, meaning to counterpoint or add a rhythm or melody, in this case, Buginese and Anglo-Australian feminisms. Warrior argues for an indigenous critique of how power and knowledge is read and in doing so he writes that “the subaltern can dance, and so sometimes can the intellectual” (85). In his rereading of Spivak, he argues that subaltern and intellectual positions can meet “and in meeting, create the possibility of communication” (86). He refers to this as dancing partly because it implicitly acknowledges without silencing the voices of the subaltern (once the subaltern speaks it is no longer the subaltern, so the notion of dancing allows for communication, “a movement from subalternity to something else” (90) which can mark “a new sort of non-complicitous relationship to a family, community or class of origin” (91). By “non-complicit” Warrior means that when a member of the subaltern becomes a scholar and therefore a member of those who historically silence the subaltern, there are other methods for communicating, of moving, between political and cultural spaces that allow for a multiplicity of voices and responses. Warrior uses a traditional Osage in-losh-ka dance as an example of how he physically and intellectually interacts with multiple voices and positions:While the music plays, our usual differences, including subalternity and intellectuality, and even gender in its own way, are levelled. For those of us moving to the music, the rules change, and those who know the steps and the songs and those who can keep up with the whirl of bodies, music and colours hold nearly every advantage over station or money. The music ends, of course, but I know I take my knowledge of the dance away and into my life as a critic, and I would argue that those levelled moments remain with us after we leave the drum, change our clothes, and go back to the rest of our lives. (93)For Warrior, the dance becomes theory into practice. For me, it became not only a way to soundly and “appropriately” present my methodology and purpose, but it also became my day to day interactions, as a female Buginese scholar, with western, Australian academic and cultural worldviews and expectations.One of the biggest movements I had to justify was my use of the first person “I”, in my thesis, to signify my identity as a Buginese woman and position myself as an insider of my community with a hybrid western feminism with Australia in mind. Perrault argues that “Writing “I” has been an emancipatory project for women” (2). In the context of my PhD thesis, uttering ‘I’ confirmed my position and aims. However, this act of explicitly situating my own identity and cultural position in my research and thesis was considered one of the more illegitimate acts. In one of the examiner reports, it was stated that situating myself centrally was fraught but that I managed to avoid the pitfalls. Judy Long argues that writing in the female first person challenges patriarchal control and order (127). For me, writing in the first person was essential if I had any chance of maintaining my Buginese identity and voice, in both my thesis and in my Australian tertiary experience. As Trinh-Minh writes, “S/he who writes, writes. In uncertainty, in necessity. And does not ask whether s/he is given permission to do so or not” (8).Van Dijk, cited in Hamilton, notes that the west and north are bound by an academic ethnocentrism and this is a particular area my own research had to negotiate. Methodologically I provided a comparative rather than a universalising perspective, engaging with middle-class, heterosexual, western, white women feminism but not privileging them. It is important for Buginese to use language discourses as a weapon to gain power, particularly because as McGlynn claims, “generally Indonesians are not particularly outspoken” (38). My research was shaped by a combination of ongoing dedication to promote women’s empowerment in the Buginese context and my role as an academic teaching English literature at the university level. I applied interpretive principles that will enable my students to see how the ideas of feminism conveyed through western literature can positively improve the quality of women’s lives and be implemented in Buginese culture without compromising our identity as Indonesians and Buginese people. At the same time, my literary translation provides a cultural comparison with Australia that allows a space for further conversations to occur. However, while attempting to negotiate western and Indonesian discourses in my thesis, I was also physically and emotionally trying to negotiate how to do this as a Muslim Buginese female PhD candidate in an Anglo-Australian academic institution. The notion of ‘dancing’ was employed as a signifier of movement between insider and outsider knowledge. Throughout the research process and my thesis I ‘danced’ with Australian feminism, traditional patriarchal Buginese society, Western academic expectations and my own emerging Indonesian feminist perspective. To ensure siri’ remained the pedagogical and ethical basis of my approach I applied Edward Said’s work on contrapuntal reading and Robert Warrior’s employment of a traditional Osage dance as a self-reflexive, embodied praxis, that is, I extended it from just a literary reading to a whole body experience. The notion of ‘dance’ allows for movement, change, contact, tension, touch and distance: it means that for those who have historically been marginalised or confined, they are no longer silenced. The metaphoric act of dancing allowed me to legitimise my PhD work – it was successfully awarded – and to negotiate a western tertiary institute in Australia with my own Buginese knowledge, culture and purpose.ReferencesAshcroft., B., and P. Ahluwalia. Edward Said. London: Routledge, 1999.Carey, Peter. True History of the Kelly Gang: A Novel. Random House LLC, 2007.Carey, Peter. My Life as a Fake: A NNovel. Random House LLC, 2009.Darcy, Emma. Billionaire Bridegroom 2319. Harlequin, 2010.Endang, Fransisca. "Disseminating Indonesian Postcoloniality into English Literature (a Case Study of 'Clara')." Jurnal Sastra Inggris 8.2: 2008.Edmunds, Kim. "The Impact of an Australian Higher Education on Gender Relations in Indonesia." ISANA International Conference "Student Success in International Education", 2007Garner, Helen. Postcards from Surfers. Melbourne: McPhee/Gribble, 1985.Hamilton, Deborah, Deborah Schriffrin, and Heidi E. Tannen, ed. The Handbook of Discourse Analysis. Victoria: Balckwll, 2001.Long, Judy. 1999. Telling Women's Lives: Subject/Narrator/Reader/Text. New York: New York UP, 1999.McGlynn, John H. "Silent Voices, Muted Expressions: Indonesian Literature Today." Manoa 12.1 (2000): 38-44.Morgan, Sally. My Place. Fremantle Press, 1987.Pelras, Christian. The Bugis. Oxford: Blackwell, 1996. Perreault, Jeanne. Writing Selves: Contemporary Feminist Autography. London & Minneapolis: University of Minnesota, 1995.Pieterse, J.N. Globalisation as Hybridisation. In M. Featherstone, S. Lash, and R. Robertson, eds., Global Modernities. London: Sage Publications, 1995.Marshall, James V. Walkabout. London: Puffin, 1957.McCullough, C. The Thorn Birds Sydney: Harper Collins, 1978.Minh-ha, Trinh T. Woman, Native, Other: Writing, Postcoloniality and Feminism. Bloomington: Indiana University, 1989.Novera, Isvet Amri. "Indonesian Postgraduate Students Studying in Australia: An Examination of Their Academic, Social and Cultural Experiences." International Education Journal 5.4 (2004): 475-487.Said, Edward. Culture and Imperialism. New York: Vintage Book, 1993. Smith, Linda Tuhiwai. Decolonizing Methodologies: Research and Indigenous Peoples. Zed Books, 1999.Spivak, Gayatri Chakravorty. "Can the Subaltern Speak?" In C. Nelson and L. Grossberg, eds., Marxism and Interpretation of Culture. Chicago: University of lllinois, 1988. 271-313.Spivak, Gayatri Chakravorty. In Other Worlds: Essays in Cultural Politics. New York: Routledge, 1988.Warrior, Robert. ""The Subaltern Can Dance, and So Sometimes Can the Intellectual." Interventions: International Journal of Postcolonial Studies 13.1 (2011): 85-94.

Photo by 187929822 © Victor Moussa | Dreamstime.com INTRODUCTION The nonconsensual taking of a human organ to use in transplantation medicine violates ethical principles, including autonomy, informed consent, and human rights, as well as criminal laws. When such an organ harvesting is not just nonconsensual, but performed in a way that causes a death or uses the pretense of brain death without meeting the criteria, it also violates the dead donor[1] rule.[2] The dead donor rule is both ethical and legal. It prevents organ retrieval that would predictably cause the death of the organ donor.[3] Retrieval of a vital organ is permissible only after a declaration of death.[4] Forced organ harvesting may breach the dead donor rule as it stands. A reimagined, broader dead donor rule could consider a larger timeframe in the forced organ harvesting context. In doing so, the broad dead donor rule could cover intent, premeditation, aiding and abetting, and due diligence failures. A broad definition of forced organ harvesting is ‘‘the removal of one or more organs from a person by means of coercion, abduction, deception, fraud, or abuse of power. . .’’[5] A more targeted definition is “[t]he killing of a person so that their organs may be removed without their free, voluntary and informed consent and transplanted into another person.”[6] In the global organ harvesting context, forced organ harvesting violates the World Health Organization (WHO) Guiding Principle 3, which says “live organ donors should be acting willingly, free of any undue influence or coercion.”[7] Furthermore, WHO states live donors should be “genetically, legally, or emotionally” attached to the recipient. Guiding Principle 1 applies to deceased donors, covers consent, and permits donation absent any known objections by the deceased.[8] Principle 7 says, “Physicians and other health professionals should not engage in transplantation procedures, and health insurers and other payers should not cover such procedures if the cells, tissues or organs concerned have been obtained through exploitation or coercion of, or payment to, the donor or the next of kin of a deceased donor.”[9] There are underground markets in which organ hunters prey on the local poor in countries with low wages and widespread poverty[10] and human trafficking that targets migrants for the purpose of organ harvesting.[11] This paper explores forced harvesting under the backdrop of the dead donor rule, arguing that a human rights violation so egregious requires holding even distant participants in the chain of events accountable. By interfering with resources necessary to carry out bad acts, legislation and corporate and institutional policies can act as powerful deterrents. A broader dead donor rule would highlight the premeditation and intent evidenced well before the act of organ retrieval. I. Background and Evidence In China, there is evidence that people incarcerated for religious beliefs and practices (Falun Gong) and ethnic minorities (Uyghurs) have been subjects of forced organ harvesting. A tribunal (the China Tribunal) found beyond a reasonable doubt that China engaged in forced organ harvesting.[12] Additionally, eight UN Special Rapporteurs found a system of subjecting political prisoners and prisoners of conscience to blood tests and radiological examinations to determine the fitness of their organs.[13] As early as 2006, investigators found evidence of forced organ harvesting from Falun Gong practitioners. [14] Over a million Uyghurs are in custody there, and there is ample evidence of biometric data collection.[15] An Uyghur tribunal found evidence of genocide.[16] “China is the only country in the world to have an industrial-scale organ trafficking practice that harvests organs from executed prisoners of conscience.”[17] Witnesses testified to the removal of organs from live people without ample anesthesia,[18] summonses to the execution grounds for organ removal,[19] methods of causing death for the purpose of organ procurement,[20] removing eyes from prisoners who were alive,[21] and forcing live prisoners into operating rooms.[22] The current extent of executions to harvest organs from prisoners of conscience in China is unknown. The Chinese press has suggested surgeons in China will perform 50,000 organ transplants this year.[23] Doctors Against Forced Organ Harvesting (DAFOR) concluded, “[f]orced organ harvesting from living people has occurred and continues to occur unabated in China.”[24] China continues to advertise in multiple languages to attract transplant tourists.[25] Wait times for organs seem to remain in the weeks.[26] In the United States, it is common to wait three to five years.[27] II. The Nascent System of Voluntary Organ Donation in China In China, throughout the 1990s and early 2000s, the supply of organs for transplant was low, and there was not a national system to register as a donor. A 1984 act permitted death row prisoners to donate organs.[28] In 2005, a Vice Minister acknowledged that 95 percent of all organ transplants used organs from death row prisoners.[29] In 2007 the planning of a voluntary system to harvest organs after cardiac death emerged. According to a Chinese publication, China adopted brain death criteria in 2013.[30] There had been public opposition due partly to cultural unfamiliarity with it.[31] Cultural values about death made it more difficult to adopt a universal brain death definition. Both Buddhist and Confucian beliefs contradicted brain death.[32] Circulatory death was traditionally culturally accepted.[33] The Ministry of Health announced that by 2015 organ harvesting would be purely voluntary and that prisoners would not be the source of organs.[34] There are cultural barriers to voluntary donation partly due to a Confucian belief that bodies return to ancestors intact and other cultural and religious beliefs about respect for the dead.[35] An emphasis on family and community over the individual posed another barrier to the Western approach to organ donation. Public awareness and insufficient healthcare professional knowledge about the process of organ donation are also barriers to voluntary donation.[36] Although the Chinese government claims its current system is voluntary and no longer exploits prisoners,[37] vast evidence contradicts the credibility of the voluntary transplant program in China.[38] III. Dead Donor Rule: A Source of Bioethical Debate It seems tedious to apply this ethical foundation to something as glaring as forced organ harvesting. But the dead donor rule is a widely held recognition that it is not right to kill one person to save another.[39] It acts as a prohibition on killing for the sake of organ retrieval and imposes a technical requirement which influences laws on how death is declared. The dead donor rule prevents organ harvesting that causes death by prohibiting harvesting any organ which the donor agreed to donate only after death prior to an official declaration of death. There is an ongoing ethical debate about the dead donor rule. Many in bioethics and transplant medicine would justify removing organs in specific situations prior to a declaration of death, abandoning the rule.[40] Some use utilitarian arguments to justify causing the death of someone who is unconscious and on life support irreversibly. Journal articles suggest that the discussion has moved to one of timing and organ retrieval.[41] Robert Truog and Franklin Miller are critics of the dead donor rule, arguing that, in practice, it is not strictly obeyed: removing organs while a brain-dead donor is still on mechanical ventilation and has a beating heart and removing organs right after life support is removed and cardio-pulmonary death is declared both might not truly meet the requirement of the dead donor rule, making following the rule “a dubious norm.”[42] Miller and Truog question the concept of brain death, citing evidence of whole body integrated functions that continue indefinitely. They challenge cardio-pulmonary death, asserting that the definition includes as dead, those who could be resuscitated. Their hearts could resume beating with medical intervention. Stopping life support causes death only in those whose lives are sustained by it. Some stipulate that the organ retrieval must not itself cause the death. Some would rejigger the cause of death: Daniel Callahan suggests that the underlying condition causes the death despite removal of life support.[43] But logically, a person could continue life support and be alive, so clearly, removing life support does cause death. Something else would have caused brain death or the circumstance that landed the person on mechanical ventilation. To be more accurate, one could say X caused the irreversible coma and removing life support caused the death itself. Miller and Truog take the position that because withdrawal of life support does cause death, the dead donor rule should be defunct as insincere. To them, retrieving vital organs from a technically alive donor should be permissible under limited conditions. They look to the autonomous choices of the donor or the surrogate (an autonomy-based argument). They appreciate the demand for organs and the ability to save lives, drawing attention to those in need of organs. Live donor organ retrieval arguably presents a slippery slope, especially if a potential donor is close to death, but not so close to label it imminent. They say physicians would not be obligated to follow the orders of a healthy person wishing to have vital organs removed, perhaps to save a close friend or relative. Similarly, Radcliffe-Richards, et al. argue that there is no reason to worry about the slippery slope of people choosing death so they can sell their vital organs, whether for money for their decedents or their creditors.[44] The movement toward permissibility and increased acceptance of medical aid in dying also influence the organ donation arena. The slippery slope toward the end of life has potential to become a realistic concern. Older adults or other people close to death may want to donate a vital organ, like their heart, to a young relative in need. That could greatly influence the timing of a decision to end one’s life. IV. Relating the Dead Donor Rule to Forced Organ Harvesting There is well documented evidence that in China organs have been removed before a declaration of death.[45] But one thing the dead donor rule does not explicitly cover is intent and the period prior to the events leading to death. It tends to apply to a near-death situation and is primarily studied in its relationship to organ donation. It is about death more than it is about life. Robertson and Lavee investigated data on transplantation of vital organs in China and they document cases where the declaration of death was a pretense, insincere, and incorrect. Their aim was to investigate whether the prisoners were in fact dead prior to organ harvesting.[46] (The China Tribunal found that organs have been removed from live prisoners and that organ harvesting has been the cause of death.) They are further concerned with the possible role of doctors as executioners, or at least as complicit in the execution as the organ harvesting so closely follows it. V. A Broader Dead Donor Rule A presumed ethical precursor to the dead donor rule may also be an important ethical extension of the rule: the dead donor rule must also prohibit killing a person who is not otherwise near death for the purpose of post-death organ harvesting. In China, extra-judicial killings of prisoners of conscience are premeditated ― there is ample evidence of blood tests and radiology to ensure organ compatibility and health.[47] To have effective ethical force, the dead donor rule should have an obvious application in preventing intentional killing for an organ retrieval, not just killing by way of organ retrieval. When we picture the dead donor rule, bioethicists tend to envision a person on life support who will either be taken off it and stop breathing or who will be declared brain dead. But the dead donor rule should apply to healthy people subject to persecution at the point when the perpetrator lays the ground for the later killing. At that point, many organizations and people may be complicit or unknowingly contributing to forced organ harvesting. In this iteration of the dead donor rule, complicity in its violations would be widespread. The dead donor rule could address the initial action of ordering a blood or radiology test or collecting any biometric data. Trained physicians and healthcare technicians perform such tests. Under my proposed stretch of the dead donor rule, they too would be complicit in the very early steps that eventually lead to killing a person for their organs. I argue these steps are part of forced organ harvesting and violate the dead donor rule. The donor is very much alive in the months and years preceding the killing. A conspiracy of indifference toward life, religious persecution, ethnic discrimination, a desire to expand organ transplant tourism, and intent to kill can violate this broader dead donor rule. The dead donor rule does not usually apply to the timing of the thought of organ removal, nor the beginning of the chain of events that leads to it. It is usually saved for the very detailed determination of what may count as death so that physicians may remove vital and other organs, with the consent of the donor.[48] But I argue that declaring death at the time of retrieval may not be enough. Contributing to the death, even by actions months or years in advance, matter too. Perhaps being on the deathbed awaiting a certain death must be distinguished from going about one’s business only to wind up a victim of forced organ harvesting. Both may well be declared dead before organ retrieval, but the likeness stops there. The person targeted for future organ retrieval to satisfy a growing transplant tourism business or local demand is unlike the altruistic person on his deathbed. While it may seem like the dead donor rule is merely a bioethics rule, it does inform the law. And it has ethical heft. It may be worth expanding it to the arena of human trafficking for the sake of organ removal and forced organ harvesting.[49] The dead donor rule is really meant to ensure that death was properly declared to protect life, something that must be protected from an earlier point. VI. Complicity: Meaning and Application Human rights due diligence refers to actions that people or institutions must take to ensure they are not contributing to a human rights violation. To advise on how to mitigate risk of involvement or contribution to human rights violations, Global Rights Compliance published an advisory that describes human rights due diligence as “[t]he proactive conduct of a medical institution and transplant-associated entity to identify and manage human rights risks and adverse human rights impacts along their entire value and supply chain.”[50] Many people and organizations enable forced organ harvesting. They may be unwittingly complicit or knowingly aiding and abetting criminal activity. For example, some suppliers of medical equipment and immunosuppressants may inadvertently contribute to human rights abuses in transplantation in China, or in other countries where organs were harvested without consent, under duress, or during human trafficking. According to Global Rights Compliance, “China in the first half of 2021 alone imported ‘a total value of about 24 billion U.S. dollars’ worth of medical technology equipment’, with the United States and Germany among the top import sources.”[51] The companies supplying the equipment may be able to slow or stop the harm by failing to supply necessary equipment and drugs. Internal due diligence policies would help companies analyze their suppliers and purchasers. Corporations, educational institutions, and other entities in the transplantation supply chain, medical education, insurance, or publishing must engage in human rights due diligence. The Global Rights Compliance advisory suggests that journals should not include any ill-gotten research. Laws should regulate corporations and target the supply chain also. All actors in the chain of supply, etc. are leading to the death of the nonconsenting victim. They are doing so while the victim is alive. The Stop Forced Organ Harvesting Act of 2023, pending in the United States, would hold any person or entity that “funds, sponsors, or otherwise facilitates forced organ harvesting or trafficking in persons for purposes of the removal of organs” responsible. The pending legislation states that: It shall be the policy of the United States—(1) to combat international trafficking in persons for purposes of the removal of organs;(2) to promote the establishment of voluntary organ donation systems with effective enforcement mechanisms in bilateral diplomatic meetings and in international health forums;(3) to promote the dignity and security of human life in accordance with the Universal Declaration of Human Rights, adopted on December 10, 1948; and(4) to hold accountable persons implicated, including members of the Chinese Communist Party, in forced organ harvesting and trafficking in persons for purposes of the removal of organs.[52] The Act calls on the President to provide Congress a list of such people or entities and to sanction them by property blocking, and, in the case of non-US citizens, passport and visa denial or revocation. The Act includes a reporting requirement under the Foreign Assistance Act of 1961 that includes an assessment of entities engaged in or supporting forced organ harvesting.[53] The law may have a meaningful impact on forced organ harvesting. Other countries have taken or are in the process of legal approaches as well.[54] Countries should consider legislation to prevent transplant tourism, criminalize complicity, and require human rights due diligence. An expanded dead donor rule supports legal and policy remedies to prevent enabling people to carry out forced organ harvesting. VII. Do Bioethicists Mention Human Rights Abuses and Forced Organ Harvesting Enough? As a field, bioethics literature often focuses on the need for more organs, the pain and suffering of those on organ transplant waitlists, and fairness in allocating organs or deciding who belongs on which waitlist and why. However, some bioethicists have drawn attention to forced organ harvesting in China. Notably, several articles noted the ethical breaches and called on academic journals to turn away articles on transplantation from China as they are based on the unethical practice of executing prisoners of conscience for their organs.[55] The call for such a boycott was originally published in a Lancet article in 2011.[56] There is some acknowledgement that China cares about how other countries perceive it,[57] which could lead to either improvements in human rights or cover-ups of violations. Ill-gotten research has long been in the bioethics purview with significant commentary on abuses in Tuskegee and the Holocaust.[58] Human research subjects are protected by the Declaration of Helsinki, which requires acting in the best interests of research subjects and informed consent among other protections.[59] The Declaration of Helsinki is directed at physicians and requires subjects enroll in medical research voluntarily. The Declaration does not explicitly cover other healthcare professionals, but its requirements are well accepted broadly in health care. CONCLUSION The dead donor rule in its current form really does not cover the life of a non-injured healthy person at an earlier point. If it could be reimagined, we could highlight the link between persecution for being a member of a group like Falun Gong practitioners or Uyghurs as the start of the process that leads to a nonconsensual organ retrieval whether after a proper declaration of death or not. It is obviously not ethically enough to ensure an execution is complete before the organs are harvested. It is abuse of the dead donor rule to have such a circumstance meet its ethical requirement. And obviously killing people for their beliefs or ethnicity (and extra-judicial killings generally) is not an ethically acceptable action for many reasons. The deaths are intentionally orchestrated, but people and companies who may have no knowledge of their role or the role of physicians they train or equipment they sell are enablers. An expanded dead donor rule helps highlight a longer timeframe and expanded scope of complicity. The organ perfusion equipment or pharmaceuticals manufactured in the United States today must not end up enabling forced organ harvesting. With an expanded ethical rule, the “donor is not dead” may become “the donor would not be dead if not for. . .” the host of illegal acts, arrests without cause, forced detention in labor camps, extra-judicial killings, lacking human rights due diligence, and inattention to this important topic. The expanded dead donor rule may also appeal to the bioethics community and justify more attention to laws and policies like the Stop Forced Organ Harvesting Act of 2023. - [1] The word “donor” in this paper describes any person from whom organs are retrieved regardless of compensation, force, or exploitation in keeping with the bioethics literature and the phrase “dead donor rule.” [2] Robertson, M.P., Lavee J. (2022). Execution by organ procurement: Breaching the dead donor rule in China. Am J Transplant, Vol.22,1804– 1812. doi:10.1111/ajt.16969. [3] Robertson, J. A. (1999). Delimiting the donor: the dead donor rule. Hastings Center Report, 29(6), 6-14. [4] Retrieval of non-vital organs which the donor consents to donate post-death (whether opt-in, opt-out, presumed, or explicit according to local law) also trigger the dead donor rule. [5] The Stop Forced Organ Harvesting Act of 2023, H.R. 1154, 118th Congress (2023), https://www.congress.gov/bill/118th-congress/house-bill/1154. [6] Do No Harm: Mitigating Human Rights Risks when Interacting with International Medical Institutions & Professionals in Transplantation Medicine, Global Rights Compliance, Legal Advisory Report, April 2022, https://globalrightscompliance.com/project/do-no-harm-policy-guidance-and-legal-advisory-report/. [7] WHO Guiding Principles on Human Cell, Tissue and Organ Transplantation, as endorsed by the sixty-third World Health Assembly in May 2010, in Resolution WHA63.22 https://apps.who.int/iris/bitstream/handle/10665/341814/WHO-HTP-EHT-CPR-2010.01-eng.pdf?sequence=1. [8] WHO Guiding Principles on Human Cell, Tissue and Organ Transplantation (2010). [9] WHO Guiding Principles on Human Cell, Tissue and Organ Transplantation (2010). [10] Promchertchoo, Pichayada (Oct. 19, 2019). Kidney for sale: Inside Philippines’ illegal organ trade. https://www.channelnewsasia.com/asia/kidney-for-sale-philippines-illegal-organ-trade-857551; Widodo, W. and Wiwik Utami (2021), The Causes of Indonesian People Selling Covered Kidneys from a Criminology and Economic Perspective: Analysis Based on Rational Choice Theory. European Journal of Political Science Studies, Vol 5, Issue 1. [11] Van Reisen, M., & Mawere, M. (Eds.). (2017). Human trafficking and trauma in the digital era: The ongoing tragedy of the trade in refugees from Eritrea. African Books Collective. [12] The Independent Tribunal into Forced Organ Harvesting from Prisoners of Conscience in China (China Tribunal) (2020). https://chinatribunal.com/wp-content/uploads/2020/03/ChinaTribunal_JUDGMENT_1stMarch_2020.pdf [13] UN Office of the High Commissioner, Press Release, China: UN human Rights experts alarmed by ‘organ harvesting’ allegations (UN OTHCHR, 14 June 2021), https://www.ohchr.org/en/press-releases/2021/06/china-un-human-rights-experts-alarmed-organ-harvesting-allegations. [14] David Matas and David Kilgour, Bloody Harvest. The killing of Falun Gong for their organs (Seraphim Editions 2009). [15] How China is crushing the Uyghurs, The Economist, video documentary, July 9, 2019, https://youtu.be/GRBcP5BrffI. [16] Uyghur Tribunal, Judgment (9 December 2021) (Uyghur Tribunal Judgment) para 1, https://uyghurtribunal.com/wp-content/uploads/2022/01/Uyghur-Tribunal-Judgment-9th-Dec-21.pdf. [17] Ali Iqbal and Aliya Khan, Killing prisoners for transplants: Forced organ harvesting in China, The Conversation Published: July 28, 2022. https://theconversation.com/killing-prisoners-for-transplants-forced-organ-harvesting-in-china-161999 [18] Testimony demonstrated surgeries to remove vital organs from live people, killing them, sometimes without ample anesthesia to prevent wakefulness and pain. China Tribunal (2020), p. 416-417. https://chinatribunal.com/wp-content/uploads/2020/03/ChinaTribunal_JUDGMENT_1stMarch_2020.pdf; Robertson MP, Lavee J. (2022), Execution by organ procurement: Breaching the dead donor rule in China. Am J Transplant, Vol.22,1804– 1812. doi:10.1111/ajt.16969. [19] Doctors reported being summoned to execution grounds and told to harvest organs amid uncertainty that the prisoner was in fact dead. China Tribunal (2020), p. 52-53. [20]In testimony to the China Tribunal, Dr. Huige Li noted four methods of organ harvesting from live prisoners: incomplete execution by shooting, after lethal injection prior to death, execution by removal of the heart, and after a determination of brain death prior to an intubation (pretense of brain death). China Tribunal (2020), pp. 54-55. https://chinatribunal.com/wp-content/uploads/2020/03/ChinaTribunal_JUDGMENT_1stMarch_2020.pdf [21] A former military medical student described removing organs from a live prisoner in the late 1990s. He further described his inability to remove the eyes of a live man and his witnessing another doctor forcefully remove the man’s eyes. China Tribunal (2020), p. 330. [22] In 2006, a nurse testified that her ex-husband, a surgeon, removed the eyes of 2,000 Falun Gong practitioners in one hospital between 2001 and 2003. She described the Falun Gong labor-camp prisoners as being forced into operating rooms where they were given a shot to stop their hearts. Other doctors removed other organs. DAFOH Special Report, 2022. https://epochpage.com/wp-content/uploads/sites/3/2022/12/DAFOH-Special-Report-2022.pdf [23] Robertson MP, Lavee J. (2022), Execution by organ procurement: Breaching the dead donor rule in China. Am J Transplant, Vol.22,1804– 1812. doi:10.1111/ajt.16969. [24] DAFOH Special Report, 2022. https://epochpage.com/wp-content/uploads/sites/3/2022/12/DAFOH-Special-Report-2022.pdf; DAFOH’s physicians were nominated for a Nobel Prize for their work to stop forced organ harvesting. Šućur, A., & Gajović, S. (2016). Nobel Peace Prize nomination for Doctors Against Forced Organ Harvesting (DAFOH) - a recognition of upholding ethical practices in medicine. Croatian medical journal, 57(3), 219–222. https://doi.org/10.3325/cmj.2016.57.219 [25] Robertson and Lavee (2022). [26] Stop Organ Harvesting in China, website (organization of the Falun Dafa). https://www.stoporganharvesting.org/short-waiting-times/ [27] National Kidney Foundation, The Kidney Transplant Waitlist – What You Need to Know, https://www.kidney.org/atoz/content/transplant-waitlist [28] Wu, Y., Elliott, R., Li, L., Yang, T., Bai, Y., & Ma, W. (2018). Cadaveric organ donation in China: a crossroads for ethics and sociocultural factors. Medicine, 97(10). [29] Wu, Elliott, et al., (2018). [30] Su, Y. Y., Chen, W. B., Liu, G., Fan, L. L., Zhang, Y., Ye, H., ... & Jiang, M. D. (2018). An investigation and suggestions for the improvement of brain death determination in China. Chinese Medical Journal, 131(24), 2910-2914. [31] Huang, J., Millis, J. M., Mao, Y., Millis, M. A., Sang, X., & Zhong, S. (2012). A pilot programme of organ donation after cardiac death in China. The Lancet, 379(9818), 862-865. [32] Yang, Q., & Miller, G. (2015). East–west differences in perception of brain death: Review of history, current understandings, and directions for future research. Journal of bioethical inquiry, 12, 211-225. [33] Huang, J., Millis, J. M., Mao, Y., Millis, M. A., Sang, X., & Zhong, S. (2015). Voluntary organ donation system adapted to Chinese cultural values and social reality. Liver Transplantation, 21(4), 419-422. [34] Huang, Millis, et al. (2015). [35] Wu, X., & Fang, Q. (2013). Financial compensation for deceased organ donation in China. Journal of Medical Ethics, 39(6), 378-379. [36] An, N., Shi, Y., Jiang, Y., & Zhao, L. (2016). Organ donation in China: the major progress and the continuing problem. Journal of biomedical research, 30(2), 81. [37] Shi, B. Y., Liu, Z. J., & Yu, T. (2020). Development of the organ donation and transplantation system in China. Chinese medical journal, 133(07), 760-765. [38] Robertson, M. P., Hinde, R. L., & Lavee, J. (2019). Analysis of official deceased organ donation data casts doubt on the credibility of China’s organ transplant reform. BMC Medical Ethics, 20(1), 1-20. [39] Miller, F.G. and Sade, R. M. (2014). Consequences of the Dead Donor Rule. The Annals of thoracic surgery, 97(4), 1131–1132. https://doi.org/10.1016/j.athoracsur.2014.01.003 [40] For example, Miller and Sade (2014) and Miller and Truog (2008). [41] Omelianchuk, A. How (not) to think of the ‘dead-donor’ rule. Theor Med Bioeth 39, 1–25 (2018). https://doi-org.ezproxy.cul.columbia.edu/10.1007/s11017-018-9432-5 [42] Miller, F.G. and Truog, R.D. (2008), Rethinking the Ethics of Vital Organ Donations. Hastings Center Report. 38: 38-46. [43] Miller and Truog, (2008), p. 40, citing Callahan, D., The Troubled Dream of Life, p. 77. [44] Radcliffe-Richards, J., Daar, A.S., Guttman, R.D., Hoffenberg, R., Kennedy, I., Lock, M., Sells, R.A., Tilney, N. (1998), The Case for Allowing Kidney Sales, The Lancet, Vol 351, p. 279. (Authored by members of the International Forum for Transplant Ethics.) [45] Robertson and Lavee, (2022). [46] Robertson and Lavee, (2022). [47] China Tribunal (2020). [48] Consent varies by local law and may be explicit or presumed and use an opt-in or opt-out system and may or may not require the signoff by a close family member. [49] Bain, Christina, Mari, Joseph. June 26, 2018, Organ Trafficking: The Unseen Form of Human Trafficking, ACAMS Today, https://www.acamstoday.org/organ-trafficking-the-unseen-form-of-human-trafficking/; Stammers, T. (2022), "2: Organ trafficking: a neglected aspect of modern slavery", Modern Slavery and Human Trafficking, Bristol, UK: Policy Press. https://bristoluniversitypressdigital.com/view/book/978144736. [50] Do No Harm: Mitigating Human Rights Risks when Interacting with International Medical Institutions & Professionals in Transplantation Medicine, Global Rights Compliance, Legal Advisory Report, April 2022, https://globalrightscompliance.com/project/do-no-harm-policy-guidance-and-legal-advisory-report/. [51] Global Rights Compliance, p. 22. [52] The Stop Forced Organ Harvesting Act of 2023, H.R. 1154, 118th Congress (2023). https://www.congress.gov/bill/118th-congress/house-bill/1154. [53] The Stop Forced Organ Harvesting Act of 2023, H.R. 1154, 118th Congress (2023), https://www.congress.gov/bill/118th-congress/house-bill/1154. [54] Global Rights Compliance notes that Belgium, France (passed law on human rights due diligence in the value supply chain), United Kingdom, United States, Canada, Australia, and New Zealand have legal approaches, resolutions, and pending laws. p. 45. [55] For example, Caplan, A.L. (2020), The ethics of the unmentionable Journal of Medical Ethics 2020;46:687-688. [56] Caplan, A.L. , Danovitch, G., Shapiro M., et al. (2011) Time for a boycott of Chinese science and medicine pertaining to organ transplantation. Lancet, 378(9798):1218. doi:10.1016/S0140-6736(11)61536-5 [57] Robertson and Lavee. [58] Smolin, D. M. (2011). The Tuskegee syphilis experiment, social change, and the future of bioethics. Faulkner L. Rev., 3, 229; Gallin, S., & Bedzow, I. (2020). Holocaust as an inflection point in the development of bioethics and research ethics. Handbook of research ethics and scientific integrity, 1071-1090. [59] World Medical Association Declaration of Helsinki: Ethical Principles for Medical Research Involving Human Subjects, adopted by the 18th WMA General Assembly, Helsinki, Finland, June 1964, and amended multiple times, most recently by the 64th WMA General Assembly, Fortaleza, Brazil, October 2013. https://www.wma.net/policies-post/wma-declaration-of-helsinki-ethical-principles-for-medical-research-involving-human-subjects/

Introduction One in three Australian marriages ends in divorce (ABS, Parental Divorce). While such statistics may be interpreted to mean that marriage is becoming less significant to Australians, many Australians continue to invest heavily in marriage as a constitutive mode of subjectification. Recently released first-wave data from a longitudinal study being conducted with seven thousand high school students in Queensland indicates that the majority of high schoolers expect to get married (Skrbis et al. 76). Significant political attention and debate in Australia has centred on the issue of marriage “equality” in relation to legislating same-sex marriage. Many accounts problematise marriage in Australia today by focussing on the current inequities involved in who can and cannot legally get married, which are important debates to be had in the process of understanding the persistent importance of marriage as a social institution. This paper, however, provides a critical account of “equality” in contemporary heterosexual marriages or heteronormative monogamous relationships. I argue that, far from being a mundane “old” debate, the distribution of unpaid work between spouses has a significant effect on women’s spousal satisfaction, and it calls into question the notion of “marriage equality” in everyday heterosexual marriages whether these are civil or common law relationships. I suggest that the contemporary “Hollywood” fantasy about marriage, which informs the same-sex marriage movement, sets up expectations that belie most people’s lived realities.Project Overview This paper draws on data from a larger research project that explores the impact of globalised ideas about good womanhood and good motherhood on Western Australian women, and how local context shapes these women’s personal ideals about their own life trajectories. Interviews were conducted with a series of women living in regional Western Australia. While more women were interviewed as part of the larger research project, this paper draws on interviews with seven intending-to-mother women and fifteen mothers. Through several open-ended questions, the women were asked about either their plans for motherhood or their experiences of motherhood, in relation to additional expectations of women’s lives, such as participation in the paid sector and body ideals. Married women were also asked about how unpaid labour—that is, domestic and, where relevant, childcare labour—is divided between themselves and their husbands. Women’s responses to these questions provide a critical account of how marriage and the notion of “equality” is currently lived out in Australia. To ensure confidentiality, their real names have been replaced by pseudonyms. My purpose in drawing on my own data in conjunction with literature on the gendered division of unpaid labour is to emphasise that while the theoretical insights are not new, the fact that a gendered disparity continues to exist is of concern because of women’s dissatisfaction with the situation, particularly in the context of frequent claims that equality is already achieved, and given that it queries the fantasy of marriage continuing to circulate in contemporary culture. The women I interviewed responded openly to questions about the division of domestic, and where relevant, childcare labour and the affects of this on their relationships. Feminist approaches to the research process highlight the importance of being reflexive about the relationship(s) between researcher and researched to make the presence of the researcher in the research process explicit (Ramazanoglu and Holland 156). Ramazanoglu and Holland argue “producing knowledge through empirical research is not the same as acting as a conduit for the voices of others” (116). While the power dynamic between researcher and researched is not generally an equal one, the fact that I am younger than all of my participants bar one (who is the same age) I believe went some way towards diffusing my position of power in the interviews. Some of my participants were also either already known to me, or had been referred to me by another participant prior to the interview, which may have made the process of interview less intimidating and more comfortable. Importantly, in many instances, my participants’ reflections about the division of unpaid labour in their marriages, their expectations, hopes for the future, and feelings about it mirrored my own feelings and realities. I related personally to their experiences, and empathise with their dilemmas. This is significant methodologically because “emotional connectedness” (Coffey 158–9) including a close identification with participants (Conle 53–4) influences the process of interpretation. However, in Scott’s terms, power operated through my assessment of participants’ dilemmas being similar to my own and my writing up of their interviews (780). The findings presented in this paper are based on my interpretation of the voices of others, and are unavoidably influenced by my personal context as the researcher. Two predominate themes emerged from women’s accounts of unpaid domestic and childcare labour. Women anticipated their partner’s participation in domestic care activities, although in most cases, this expectation was not met. Further, women held these expectations for “when they had children,” even though their partners did not presently participate in domestic activities. At the same time, the women accepted that, while their husband’s should participate more in unpaid work, this participation would not be equal to their own responsibilities regardless of what other activities either were engaged in outside of the domestic and familial sphere. I found that while women expect a fairer division of domestic labour, they do not expect it to be “50/50.” I argue that the gendered division of labour has changed less than most couples readily admit, as seen through the following overview. Gender Relations: Changes and Stases In Western societies, women’s roles in the public sphere have changed considerably over the last fifty plus years. Women now constitute a significant percentage of the paid workforce. Today, couple families where both partners work in the paid sector are the most common of all families (ABS, Family Functioning). However, there has not been a corresponding shift in the way that unpaid labour is divided between partners. Only one half of the historical gendered division of labour has undergone change; while women as well as men now operate in the paid (and thus valued) sector (traditionally available only to men), women still predominately perform most of the unpaid (and undervalued) domestic work. Gender researchers have been reporting on the unequal division of domestic labour between couples, and the material and emotional consequences for women, for a long time (see Hochschild; DeVault; Coltrane), yet I argue that it remains largely unchanged, and dismissed as an important issue in the Australian community. Hochschild’s work, in particular, made a significant contribution to research into the gendered division of unpaid labour between couples by analysing and reporting on interview data collected from fifty couples, both working full-time in the paid sector, with young children. Hochschild identified and reported on couples justifications for the way they divide domestic and care, which, as I will demonstrate, are still common today (17, see also Hochschild with Machung 128). Several contemporary studies (Meisenbach; Shelton and Johnson) report that women perform the majority of domestic and care duties, despite women’s long established presence in the paid workforce. Indeed, historically, the majority of women participated in the workforce, with only middle and upper-class women experiencing a delayed entry to paid work. In their review of current research into the division of household labour in the United States Lachance-Grzela and Bouchard find that: In spite of women’s increased commitment to the labour force market and their associated political and social achievements, their advances have not been paralleled in the familiar sphere…the gains women have made outside the home have not translated directly into an egalitarian allocation of household labour…[American] women continue to perform the vast majority of unpaid tasks performed to satisfy the needs of family members or to maintain the home. (767) Exchange theories predicted that women’s increased participation in paid work would stimulate an increase in the time men spent performing domestic work (Carter 16). However, various studies including Lupton’s investigation into the distinctions, or indeed, commonalities, between the roles of “mother” and “father” find that women still perform the majority of childcare and domestic labour, even those who are also engaged in paid employment. Time use studies conducted by the Australian Bureau of Statistics also suggest that this prediction has not eventuated, and that whilst some women may have an improved capacity to negotiate with their partners about domestic labour division because of their income, this is not always the case (Carter 17). Ella (aged 32, mother of one) described “quite enjoying it” when her partner was away on business because it was less work not having to deal with his mess on top of other tasks. This is consistent with earlier research findings that single mothers spend less time on domestic work than women with children who live with men (Carter 17). It is common for men to do less domestic work than they create (Bittman 3). All of the women I interviewed who were in partnerships and intending to mother sometime in the future were either employed full-time in the paid sector, seeking full-time employment after completing graduate degrees, or combining paid work with tertiary study. One participant had recently dropped her hours from full-time to part-time because she was pregnant. All of the partnered women who were already mothering at the time of the interview were in full-time employment before the birth of their first child, and seven of them were still in paid employment; one full-time, one three-quarter time and five part time. Most women reported doing the majority, if not all, of the domestic and childcare labour regardless of whether they combined this work with paid work outside of the home. Whilst some women were indifferent to the inequity in their domestic labour and childcare responsibilities, most identified it as a source of tension, conflict, and disappointment in their spousal relationships. These women had anticipated greater participation by their husbands in the home, an optimism derived from some other source than those women with whom they interact.Anticipating Participation In their in-depth psychological study into the specific temporal disruptions and occasions of social dislocation ensuing from the birth of a child in the United States, Monk et al. found that the disruption to daily events and the reduction of social activities were more discernible for women than for men. Other research (Arendell; Hays; Mauthner; Nicolson) conducted at this time concurred with these findings. Similar results are found over a decade later. Choi et al. found most women feel at least some resentment about the impact of parenthood on their lives being “far greater for them than for their partner” (174). Influenced by reports of a supposed ideological shift in the late 1990s wherein fathers were encouraged to take a more active role in the raising of their children in ways previously considered maternal (Lupton 51), women today tend to anticipate that their husband’s will participate more in domestic and care activities, which predominately, does not eventuate. Consequently, feeling “let down” by partners has been identified as a key factor in the presentation of postnatal depression (Choi et al. 175). The women I interviewed who were planning to mother sometime in the future anticipated that their husbands would participate more in the home after the birth of a child. Gabrielle (aged 25, married for three years) hoped that this would be an 80/20 split. The idea of an 80/20 split as an “improvement” may be confronting, but this is Gabrielle’s reality, and her predicament—shared by many other women today—captures the prevailing importance of discussions around the gendered division of domestic labour. Several interviewees who were already mothering had also anticipated that their husbands would participate alongside them in household and childcare related activities. For most, this kind of participation had not eventuated and women were left with feelings of disappointment, and tensions and conflicts in their marriages. Grainne (aged 30, married for five years, mother of one) had expected her husband to be reasonably supportive and helpful around the house when they started their family. Yet she was unpleasantly surprised and intensely disappointed by how participation in the home had worked out since she and her husband had become parents six months ago. Grainne explained that she: expected that my husband would be more supportive and more helpful…I’ve been even more disappointed because he hasn’t followed through with…how I thought he would be…I almost despair a bit…we have actually struggled more in our relationship in the last six months than in the five and a half years. Grainne spoke about the impact of this inequity on the intimacy in her relationship. This is consistent with Pocock who identifies inequity in the division of unpaid work as one of “two work-related spokes in the wheel” (106–107) of spousal intimacy; the other being time and energy to communicate. According to Pocock intimacy, not necessarily sexual, is lacking in many Australian spousal relationships with unequal divisions of unpaid labour (107). While the loss of intimacy results in feelings of loss and regret, for some women, it is characterised as a past concern in their overworked and stressed lives (Pocock 107). Several women from professional backgrounds, in particular Lena and Freya, identified the inequity in their partnerships when it came to home duties and childcare as a significant, and even as the “main,” source of tension and conflict in their spousal relationships. Lena (aged 30, married for five years, mother of two) described having “great debates” with her husband about the division of domestic labour and childcare in their partnership. From her husband’s perspective, it is her “job…to do all the kids and the housework and everything else,” whereas from Lena’s perspective, “he should be able to feed the kids and clean up” on the weekend if she needs to go out. Freya (aged 30, married for ten years, mother of three) also talked about the “various rows” she had had with her husband about her domestic and childcare load. She described herself as “not coping” with the workload. For all of these women, domestic inequality in their marriages has real emotional consequences for them as individuals, and is a significant source of marital discontent. Women’s decisions about whether and when to have children, and how many to have, are influenced by the inequity experienced in marital relationships. Although I suggest that women’s desire to become mothers may eventually outweigh these immediate and everyday concerns, reports from already mothering women suggest that this source of conflict does not dissipate. The evidence gathered from my interviews demonstrates that trying to change dynamics in a relationship, when it comes to domestic tasks, is even more difficult when it is compounded with the emotional, mental and physical demands of motherhood, as Choi et al. also suggest (177).Accepting Inequality The findings of my study suggest that women intending to mother and those already mothering continue to expect to do more domestic and childcare labour than their partners. However, even with this concession, some women are still over-optimistic in their estimations about the amount of domestic labour their partner’s will perform. Fetterolf and Eagly find similar patterns in gender equality expectations in the United States amongst female college undergraduates planning to mother sometime in the future (90–91). Some women I interviewed who were planning to mother sometime in the future described their own attempts to negotiate with their partner to make them do more work. For instance, Gabrielle (aged 25, married for three years), who, as discussed earlier, hoped that her husband will participate more in the home after the birth of a child, said: Once we’ve had kids he might change and realise he might have to help out a little bit more, I can’t actually do everything…I don’t think it’ll be 50/50 just from experience of how we’ve been married so far… I do hope that it’ll be maybe 80/20 or something like that. When asked about whether their current division of house work was a concern for her, particularly in relation to having children, Gabrielle replied that she just “nagged” about it. Putting her discontent in the frame of “nagging” trivialises the issue. While it is men who tend to characterise women’s discontent as “nagging,” women can also internalise, and use this language to minimise their own feelings. That men “just don’t see mess and dirt” in the same way that women do is a popular idea drawn on to account for women’s acceptance of inequity in the home as evidenced in numerous statements from the women I interviewed. Commentaries like these align with Carter’s (1) observations that generally accepted ideas about women and men (for example, that women see dirt and men do not) are drawn on to explain and justify domestic labour arrangements. In response to how domestic labour is divided between her husband and herself, Marguerite (aged 25, married for ten months), like Gabrielle (aged 25, married for three years), described an “80/20 split,” with her as the 80%. Marguerite commented that “it’s not that he’s lazy, it’s just that he doesn’t see it, he doesn’t realise that a house needs cleaning.” Fallding described these ideas, and the behaviours that ensue, as a type of patriarchal family model, specifically “rightful patriarchy” (69) that includes the idea that women naturally pay more attention to detail than men. Conclusion “Falling in love” and “getting married” remains an important cultural narrative in Australian society. As Gabrielle (aged 25, married for three years) described, people ask you “when are you getting married? When are you having kids?” because “that’s just what you do.” I argue that offering critical accounts of heteronormative monogamous relationships/marriage equality from a variety of positions is important to understandings of these relationships in contemporary Australia. Accounts of the division of unpaid labour in the home between spouses provide one forum through which equality within marriage/heteronormative monogamous relationships can be examined. A tension exists between an expectation of participation on the part of women about their partner’s role in the home, and a latent acceptance by most women that equality in the division of unpaid work is unrealistic and unachievable. Men remain largely removed from work in the home and appear to have a degree of choice about their level of participation in domestic and care duties. The consistency of these findings with earlier work, some of which is over a decade old, suggests that the way families divide unpaid domestic and care labour remains gendered, despite significant changes in other aspects of gender relations. Many of the current discussions about marriage idealise it in ways that are not borne out in this research. 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Feminist Methodology: Challenges and Choices. London: Sage, 2002. Scott, Joan. “The Evidence of Experience.” Critical Inquiry 17.4 (1991): 773–97. Shelton, Nikki, and Sally Johnson. “'I Think Motherhood for Me Was a Bit Like a Double-Edged Sword': The Narratives of Older Mothers.” Journal of Community and Applied Social Psychology 16.1 (2006): 316–30. Skrbis, Zlatko, Mark Western, Bruce Tranter, David Hogan, Rebecca Coates, Jonathan Smith, Belinda Hewitt, and Margery Mayall. “Expecting the Unexpected: Young People’s Expectations about Marriage and Family.” Journal of Sociology 48.1 (2012): 63–83.

This article investigates the prosthesis of identity through the process of branding. It examines cross-cultural manifestations of this phenomena from sixth millennium BCE Syria to twelfth century Japan and Britain. From the Neolithic Era, humanity has sort to extend their identities using pictorial signs that were characteristically simple. Designed to be distinctive and instantly recognisable, the totemic symbols served to signal the origin of the bearer. Subsequently, the development of branding coincided with periods of increased in mobility both in respect to geography and social strata. This includes fifth millennium Mesopotamia, nineteenth century Britain, and America during the 1920s.There are fewer articles of greater influence on contemporary culture than A Theory of Human Motivation written by Abraham Maslow in 1943. Nearly seventy-five years later, his theories about the societal need for “belongingness” and “esteem” remain a mainstay of advertising campaigns (Maslow). Although the principles are used to sell a broad range of products from shampoo to breakfast cereal they are epitomised by apparel. This is with refence to garments and accessories bearing corporation logos. Whereas other purchased items, imbued with abstract products, are intended for personal consumption the public display of these symbols may be interpreted as a form of signalling. The intention of the wearers is to literally seek the fulfilment of the aforementioned social needs. This article investigates the use of brands as prosthesis.Coats and Crests: Identity Garnered on Garments in the Middle Ages and the Muromachi PeriodA logo, at its most basic, is a pictorial sign. In his essay, The Visual Language, Ernest Gombrich described the principle as reducing images to “distinctive features” (Gombrich 46). They represent a “simplification of code,” the meaning of which we are conditioned to recognise (Gombrich 46). Logos may also be interpreted as a manifestation of totemism. According to anthropologist Claude Levi-Strauss, the principle exists in all civilisations and reflects an effort to evoke the power of nature (71-127). Totemism is also a method of population distribution (Levi-Strauss 166).This principle, in a form garnered on garments, is manifested in Mon Kiri. The practice of cutting out family crests evolved into a form of corporate branding in Japan during the Meiji Period (1868-1912) (Christensen 14). During the Muromachi period (1336-1573) the crests provided an integral means of identification on the battlefield (Christensen 13). The adorning of crests on armour was also exercised in Europe during the twelfth century, when the faces of knights were similarly obscured by helmets (Family Crests of Japan 8). Both Mon Kiri and “Coat[s] of Arms” utilised totemic symbols (Family Crests of Japan 8; Elven 14; Christensen 13). The mon for the imperial family (figs. 1 & 2) during the Muromachi Period featured chrysanthemum and paulownia flowers (Goin’ Japaneque). “Coat[s] of Arms” in Britain featured a menagerie of animals including lions (fig. 3), horses and eagles (Elven).The prothesis of identity through garnering symbols on the battlefield provided “safety” through demonstrating “belongingness”. This constituted a conflation of two separate “needs” in the “hierarchy of prepotency” propositioned by Maslow. Fig. 1. The mon symbolising the Imperial Family during the Muromachi Period featured chrysanthemum and paulownia. "Kamon (Japanese Family Crests): Ancient Key to Samurai Culture." Goin' Japaneque! 15 Nov. 2015. 27 July 2019 <http://goinjapanesque.com/05983/>.Fig. 2. An example of the crest being utilised on a garment can be found in this portrait of samurai Oda Nobunaga. "Japan's 12 Most Famous Samurai." All About Japan. 27 Aug. 2018. 27 July 2019 <https://allabout-japan.com/en/article/5818/>.Fig. 3. A detail from the “Index of Subjects of Crests.” Elven, John Peter. The Book of Family Crests: Comprising Nearly Every Family Bearing, Properly Blazoned and Explained, Accompanied by Upwards of Four Thousand Engravings. Henry Washbourne, 1847.The Pursuit of Prestige: Prosthetic Pedigree from the Late Georgian to the Victorian Eras In 1817, the seal engraver to Prince Regent, Alexander Deuchar, described the function of family crests in British Crests: Containing The Crest and Mottos of The Families of Great Britain and Ireland; Together with Those of The Principal Cities and Heraldic Terms as follows: The first approach to civilization is the distinction of ranks. So necessary is this to the welfare and existence of society, that, without it, anarchy and confusion must prevail… In an early stage, heraldic emblems were characteristic of the bearer… Certain ordinances were made, regulating the mode of bearing arms, and who were entitled to bear them. (i-v)The partitioning of social classes in Britain had deteriorated by the time this compendium was published, with displays of “conspicuous consumption” displacing “heraldic emblems” as a primary method of status signalling (Deuchar 2; Han et al. 18). A consumerism born of newfound affluence, and the desire to signify this wealth through luxury goods, was as integral to the Industrial Revolution as technological development. In Rebels against the Future, published in 1996, Kirkpatrick Sale described the phenomenon:A substantial part of the new population, though still a distinct minority, was made modestly affluent, in some places quite wealthy, by privatization of of the countryside and the industrialization of the cities, and by the sorts of commercial and other services that this called forth. The new money stimulated the consumer demand… that allowed a market economy of a scope not known before. (40)This also reflected improvements in the provision of “health, food [and] education” (Maslow; Snow 25-28). With their “physiological needs” accommodated, this ”substantial part” of the population were able to prioritised their “esteem needs” including the pursuit for prestige (Sale 40; Maslow).In Britain during the Middle Ages laws “specified in minute detail” what each class was permitted to wear (Han et al. 15). A groom, for example, was not able to wear clothing that exceeded two marks in value (Han et al. 15). In a distinct departure during the Industrial Era, it was common for the “middling and lower classes” to “ape” the “fashionable vices of their superiors” (Sale 41). Although mon-like labels that were “simplified so as to be conspicuous and instantly recognisable” emerged in Europe during the nineteenth century their application on garments remained discrete up until the early twentieth century (Christensen 13-14; Moore and Reid 24). During the 1920s, the French companies Hermes and Coco Chanel were amongst the clothing manufacturers to pioneer this principle (Chaney; Icon).During the 1860s, Lincolnshire-born Charles Frederick Worth affixed gold stamped labels to the insides of his garments (Polan et al. 9; Press). Operating from Paris, the innovation was consistent with the introduction of trademark laws in France in 1857 (Lopes et al.). He would become known as the “Father of Haute Couture”, creating dresses for royalty and celebrities including Empress Eugene from Constantinople, French actress Sarah Bernhardt and Australian Opera Singer Nellie Melba (Lopes et al.; Krick). The clothing labels proved and ineffective deterrent to counterfeit, and by the 1890s the House of Worth implemented other measures to authenticate their products (Press). The legitimisation of the origin of a product is, arguably, the primary function of branding. This principle is also applicable to subjects. The prothesis of brands, as totemic symbols, assisted consumers to relocate themselves within a new system of population distribution (Levi-Strauss 166). It was one born of commerce as opposed to heraldry.Selling of Self: Conferring Identity from the Neolithic to Modern ErasIn his 1817 compendium on family crests, Deuchar elaborated on heraldry by writing:Ignoble birth was considered as a stain almost indelible… Illustrious parentage, on the other hand, constituted the very basis of honour: it communicated peculiar rights and privileges, to which the meaner born man might not aspire. (v-vi)The Twinings Logo (fig. 4) has remained unchanged since the design was commissioned by the grandson of the company founder Richard Twining in 1787 (Twining). In addition to reflecting the heritage of the family-owned company, the brand indicated the origin of the tea. This became pertinent during the nineteenth century. Plantations began to operate from Assam to Ceylon (Jones 267-269). Amidst the rampant diversification of tea sources in the Victorian era, concerns about the “unhygienic practices” of Chinese producers were proliferated (Wengrow 11). Subsequently, the brand also offered consumers assurance in quality. Fig. 4. The Twinings Logo reproduced from "History of Twinings." Twinings. 24 July 2019 <https://www.twinings.co.uk/about-twinings/history-of-twinings>.The term ‘brand’, adapted from the Norse “brandr”, was introduced into the English language during the sixteenth century (Starcevic 179). At its most literal, it translates as to “burn down” (Starcevic 179). Using hot elements to singe markings onto animals been recorded as early as 2700 BCE in Egypt (Starcevic 182). However, archaeologists concur that the modern principle of branding predates this practice. The implementation of carved seals or stamps to make indelible impressions of handcrafted objects dates back to Prehistoric Mesopotamia (Starcevic 183; Wengrow 13). Similar traditions developed during the Bronze Age in both China and the Indus Valley (Starcevic 185). In all three civilisations branding facilitated both commerce and aspects of Totemism. In the sixth millennium BCE in “Prehistoric” Mesopotamia, referred to as the Halaf period, stone seals were carved to emulate organic form such as animal teeth (Wengrow 13-14). They were used to safeguard objects by “confer[ring] part of the bearer’s personality” (Wengrow 14). They were concurrently applied to secure the contents of vessels containing “exotic goods” used in transactions (Wengrow 15). Worn as amulets (figs. 5 & 6) the seals, and the symbols they produced, were a physical extension of their owners (Wengrow 14).Fig. 5. Recreation of stamp seal amulets from Neolithic Mesopotamia during the sixth millennium BCE. Wengrow, David. "Prehistories of Commodity Branding." Current Anthropology 49.1 (2008): 14.Fig. 6. “Lot 25Y: Rare Syrian Steatite Amulet – Fertility God 5000 BCE.” The Salesroom. 27 July 2019 <https://www.the-saleroom.com/en-gb/auction-catalogues/artemis-gallery-ancient-art/catalogue-id-srartem10006/lot-a850d229-a303-4bae-b68c-a6130005c48a>. Fig. 7. Recreation of stamp seal designs from Mesopotamia from the late fifth to fourth millennium BCE. Wengrow, David. "Prehistories of Commodity Branding." Current Anthropology 49. 1 (2008): 16.In the following millennia, the seals would increase exponentially in application and aesthetic complexity (fig. 7) to support the development of household cum cottage industries (Wengrow 15). In addition to handcrafts, sealed vessels would transport consumables such as wine, aromatic oils and animal fats (Wengrow 18). The illustrations on the seals included depictions of rituals undertaken by human figures and/or allegories using animals. It can be ascertained that the transition in the Victorian Era from heraldry to commerce, from family to corporation, had precedence. By extension, consumers were able to participate in this process of value attribution using brands as signifiers. The principle remained prevalent during the modern and post-modern eras and can be respectively interpreted using structuralist and post-structuralist theory.Totemism to Simulacrum: The Evolution of Advertising from the Modern to Post-Modern Eras In 2011, Lisa Chaney wrote of the inception of the Coco Chanel logo (fig. 8) in her biography Chanel: An Intimate Life: A crucial element in the signature design of the Chanel No.5 bottle is the small black ‘C’ within a black circle set as the seal at the neck. On the top of the lid are two more ‘C’s, intertwined back to back… from at least 1924, the No5 bottles sported the unmistakable logo… these two ‘C’s referred to Gabrielle, – in other words Coco Chanel herself, and would become the logo for the House of Chanel. Chaney continued by describing Chanel’s fascination of totemic symbols as expressed through her use of tarot cards. She also “surrounded herself with objects ripe with meaning” such as representations of wheat and lions in reference prosperity and to her zodiac symbol ‘Leo’ respectively. Fig. 8. No5 Chanel Perfume, released in 1924, featured a seal-like logo attached to the bottle neck. “No5.” Chanel. 25 July 2019 <https://www.chanel.com/us/fragrance/p/120450/n5-parfum-grand-extrait/>.Fig. 9. This illustration of the bottle by Georges Goursat was published in a women’s magazine circa 1920s. “1921 Chanel No5.” Inside Chanel. 26 July 2019 <http://inside.chanel.com/en/timeline/1921_no5>; “La 4éme Fête de l’Histoire Samedi 16 et dimache 17 juin.” Ville de Perigueux. Musée d’art et d’archéologie du Périgord. 28 Mar. 2018. 26 July 2019 <https://www.perigueux-maap.fr/category/archives/page/5/>. This product was considered the “financial basis” of the Chanel “empire” which emerged during the second and third decades of the twentieth century (Tikkanen). Chanel is credited for revolutionising Haute Couture by introducing chic modern designs that emphasised “simplicity and comfort.” This was as opposed to the corseted highly embellished fashion that characterised the Victorian Era (Tikkanen). The lavish designs released by the House of Worth were, in and of themselves, “conspicuous” displays of “consumption” (Veblen 17). In contrast, the prestige and status associated with the “poor girl” look introduced by Chanel was invested in the story of the designer (Tikkanen). A primary example is her marinière or sailor’s blouse with a Breton stripe that epitomised her ascension from café singer to couturier (Tikkanen; Burstein 8). This signifier might have gone unobserved by less discerning consumers of fashion if it were not for branding. Not unlike the Prehistoric Mesopotamians, this iteration of branding is a process which “confer[s]” the “personality” of the designer into the garment (Wengrow 13 -14). The wearer of the garment is, in turn, is imbued by extension. Advertisers in the post-structuralist era embraced Levi-Strauss’s structuralist anthropological theories (Williamson 50). This is with particular reference to “bricolage” or the “preconditioning” of totemic symbols (Williamson 173; Pool 50). Subsequently, advertising creatives cum “bricoleur” employed his principles to imbue the brands with symbolic power. This symbolic capital was, arguably, transferable to the product and, ultimately, to its consumer (Williamson 173).Post-structuralist and semiotician Jean Baudrillard “exhaustively” critiqued brands and the advertising, or simulacrum, that embellished them between the late 1960s and early 1980s (Wengrow 10-11). In Simulacra and Simulation he wrote,it is the reflection of a profound reality; it masks and denatures a profound reality; it masks the absence of a profound reality; it has no relation to any reality whatsoever: it is its own pure simulacrum. (6)The symbolic power of the Chanel brand resonates in the ‘profound reality’ of her story. It is efficiently ‘denatured’ through becoming simplified, conspicuous and instantly recognisable. It is, as a logo, physically juxtaposed as simulacra onto apparel. This simulacrum, in turn, effects the ‘profound reality’ of the consumer. In 1899, economist Thorstein Veblen wrote in The Theory of the Leisure Class:Conspicuous consumption of valuable goods it the means of reputability to the gentleman of leisure… costly entertainments, such as potlatch or the ball, are peculiarly adapted to serve this end… he consumes vicariously for his host at the same time that he is witness to the consumption… he is also made to witness his host’s facility in etiquette. (47)Therefore, according to Veblen, it was the witnessing of “wasteful” consumption that “confers status” as opposed the primary conspicuous act (Han et al. 18). Despite television being in its experimental infancy advertising was at “the height of its powers” during the 1920s (Clark et al. 18; Hill 30). Post-World War I consumers, in America, experienced an unaccustomed level of prosperity and were unsuspecting of the motives of the newly formed advertising agencies (Clark et al. 18). Subsequently, the ‘witnessing’ of consumption could be constructed across a plethora of media from the newly emerged commercial radio to billboards (Hill viii–25). The resulting ‘status’ was ‘conferred’ onto brand logos. Women’s magazines, with a legacy dating back to 1828, were a primary locus (Hill 10).Belonging in a Post-Structuralist WorldIt is significant to note that, in a post-structuralist world, consumers do not exclusively seek upward mobility in their selection of brands. The establishment of counter-culture icon Levi-Strauss and Co. was concurrent to the emergence of both The House of Worth and Coco Chanel. The Bavarian-born Levi Strauss commenced selling apparel in San Francisco in 1853 (Levi’s). Two decades later, in partnership with Nevada born tailor Jacob Davis, he patented the “riveted-for-strength” workwear using blue denim (Levi’s). Although the ontology of ‘jeans’ is contested, references to “Jene Fustyan” date back the sixteenth century (Snyder 139). It involved the combining cotton, wool and linen to create “vestments” for Geonese sailors (Snyder 138). The Two Horse Logo (fig. 10), depicting them unable to pull apart a pair of jeans to symbolise strength, has been in continuous use by Levi Strauss & Co. company since its design in 1886 (Levi’s). Fig. 10. The Two Horse Logo by Levi Strauss & Co. has been in continuous use since 1886. Staff Unzipped. "Two Horses. One Message." Heritage. Levi Strauss & Co. 1 July 2011. 25 July 2019 <https://www.levistrauss.com/2011/07/01/two-horses-many-versions-one-message/>.The “rugged wear” would become the favoured apparel amongst miners at American Gold Rush (Muthu 6). Subsequently, between the 1930s – 1960s Hollywood films cultivated jeans as a symbol of “defiance” from Stage Coach staring John Wayne in 1939 to Rebel without A Cause staring James Dean in 1955 (Muthu 6; Edgar). Consequently, during the 1960s college students protesting in America (fig. 11) against the draft chose the attire to symbolise their solidarity with the working class (Hedarty). Notwithstanding a 1990s fashion revision of denim into a diversity of garments ranging from jackets to skirts, jeans have remained a wardrobe mainstay for the past half century (Hedarty; Muthu 10). Fig. 11. Although the brand label is not visible, jeans as initially introduced to the American Goldfields in the nineteenth century by Levi Strauss & Co. were cultivated as a symbol of defiance from the 1930s – 1960s. It documents an anti-war protest that occurred at the Pentagon in 1967. Cox, Savannah. "The Anti-Vietnam War Movement." ATI. 14 Dec. 2016. 16 July 2019 <https://allthatsinteresting.com/vietnam-war-protests#7>.In 2003, the journal Science published an article “Does Rejection Hurt? An Fmri Study of Social Exclusion” (Eisenberger et al.). The cross-institutional study demonstrated that the neurological reaction to rejection is indistinguishable to physical pain. Whereas during the 1940s Maslow classified the desire for “belonging” as secondary to “physiological needs,” early twenty-first century psychologists would suggest “[social] acceptance is a mechanism for survival” (Weir 50). In Simulacra and Simulation, Jean Baudrillard wrote: Today abstraction is no longer that of the map, the double, the mirror or the concept. Simulation is no longer that of a territory, a referential being or a substance. It is the generation by models of a real without origin or reality: a hyperreal… (1)In the intervening thirty-eight years since this document was published the artifice of our interactions has increased exponentially. In order to locate ‘belongness’ in this hyperreality, the identities of the seekers require a level of encoding. Brands, as signifiers, provide a vehicle.Whereas in Prehistoric Mesopotamia carved seals, worn as amulets, were used to extend the identity of a person, in post-digital China WeChat QR codes (fig. 12), stored in mobile phones, are used to facilitate transactions from exchanging contact details to commerce. Like other totems, they provide access to information such as locations, preferences, beliefs, marital status and financial circumstances. These individualised brands are the most recent incarnation of a technology that has developed over the past eight thousand years. The intermediary iteration, emblems affixed to garments, has remained prevalent since the twelfth century. Their continued salience is due to their visibility and, subsequent, accessibility as signifiers. Fig. 12. It may be posited that Wechat QR codes are a form individualised branding. Like other totems, they store information pertaining to the owner’s location, beliefs, preferences, marital status and financial circumstances. “Join Wechat groups using QR code on 2019.” Techwebsites. 26 July 2019 <https://techwebsites.net/join-wechat-group-qr-code/>.Fig. 13. Brands function effectively as signifiers is due to the international distribution of multinational corporations. This is the shopfront of Chanel in Dubai, which offers customers apparel bearing consistent insignia as the Parisian outlet at on Rue Cambon. Customers of Chanel can signify to each other with the confidence that their products will be recognised. “Chanel.” The Dubai Mall. 26 July 2019 <https://thedubaimall.com/en/shop/chanel>.Navigating a post-structuralist world of increasing mobility necessitates a rudimental understanding of these symbols. Whereas in the nineteenth century status was conveyed through consumption and witnessing consumption, from the twentieth century onwards the garnering of brands made this transaction immediate (Veblen 47; Han et al. 18). The bricolage of the brands is constructed by bricoleurs working in any number of contemporary creative fields such as advertising, filmmaking or song writing. They provide a system by which individuals can convey and recognise identities at prima facie. They enable the prosthesis of identity.ReferencesBaudrillard, Jean. Simulacra and Simulation. Trans. Sheila Faria Glaser. United States: University of Michigan Press, 1994.Burstein, Jessica. Cold Modernism: Literature, Fashion, Art. United States: Pennsylvania State University Press, 2012.Chaney, Lisa. Chanel: An Intimate Life. United Kingdom: Penguin Books Limited, 2011.Christensen, J.A. Cut-Art: An Introduction to Chung-Hua and Kiri-E. New York: Watson-Guptill Publications, 1989. Clark, Eddie M., Timothy C. Brock, David E. Stewart, David W. Stewart. Attention, Attitude, and Affect in Response to Advertising. United Kingdom: Taylor & Francis Group, 1994.Deuchar, Alexander. British Crests: Containing the Crests and Mottos of the Families of Great Britain and Ireland Together with Those of the Principal Cities – Primary So. London: Kirkwood & Sons, 1817.Ebert, Robert. “Great Movie: Stage Coach.” Robert Ebert.com. 1 Aug. 2011. 10 Mar. 2019 <https://www.rogerebert.com/reviews/great-movie-stagecoach-1939>.Elven, John Peter. The Book of Family Crests: Comprising Nearly Every Family Bearing, Properly Blazoned and Explained, Accompanied by Upwards of Four Thousand Engravings. London: Henry Washbourne, 1847.Eisenberger, Naomi I., Matthew D. Lieberman, and Kipling D. Williams. "Does Rejection Hurt? An Fmri Study of Social Exclusion." Science 302.5643 (2003): 290-92.Family Crests of Japan. California: Stone Bridge Press, 2007.Gombrich, Ernst. "The Visual Image: Its Place in Communication." Scientific American 272 (1972): 82-96.Hedarty, Stephanie. "How Jeans Conquered the World." BBC World Service. 28 Feb. 2012. 26 July 2019 <https://www.bbc.com/news/magazine-17101768>. Han, Young Jee, Joseph C. Nunes, and Xavier Drèze. "Signaling Status with Luxury Goods: The Role of Brand Prominence." Journal of Marketing 74.4 (2010): 15-30.Hill, Daniel Delis. Advertising to the American Woman, 1900-1999. United States of Ame: Ohio State University Press, 2002."History of Twinings." Twinings. 24 July 2019 <https://www.twinings.co.uk/about-twinings/history-of-twinings>. icon-icon: Telling You More about Icons. 18 Dec. 2016. 26 July 2019 <http://www.icon-icon.com/en/hermes-logo-the-horse-drawn-carriage/>. Jones, Geoffrey. Merchants to Multinationals: British Trading Companies in the 19th and 20th Centuries. Oxford: Oxford UP, 2002.Kamon (Japanese Family Crests): Ancient Key to Samurai Culture." Goin' Japaneque! 15 Nov. 2015. 27 July 2019 <http://goinjapanesque.com/05983/>. Krick, Jessa. "Charles Frederick Worth (1825-1895) and the House of Worth." Heilburnn Timeline of Art History. The Met. Oct. 2004. 23 July 2019 <https://www.metmuseum.org/toah/hd/wrth/hd_wrth.htm>. Levi’s. "About Levis Strauss & Co." 25 July 2019 <https://www.levis.com.au/about-us.html>. Lévi-Strauss, Claude. Totemism. London: Penguin, 1969.Lopes, Teresa de Silva, and Paul Duguid. Trademarks, Brands, and Competitiveness. Abingdon: Routledge, 2010.Maslow, Abraham. "A Theory of Human Motivation." British Journal of Psychiatry 208.4 (1942): 313-13.Moore, Karl, and Susan Reid. "The Birth of Brand: 4000 Years of Branding History." Business History 4.4 (2008).Muthu, Subramanian Senthikannan. Sustainability in Denim. Cambridge Woodhead Publishing, 2017.Polan, Brenda, and Roger Tredre. The Great Fashion Designers. Oxford: Bloomsbury Publishing, 2009.Pool, Roger C. Introduction. Totemism. New ed. Harmondsworth: Penguin, 1969.Press, Claire. Wardrobe Crisis: How We Went from Sunday Best to Fast Fashion. Melbourne: Schwartz Publishing, 2016.Sale, K. Rebels against the Future: The Luddites and Their War on the Industrial Revolution: Lessons for the Computer Age. Massachusetts: Addison-Wesley, 1996.Snow, C.P. The Two Cultures and the Scientific Revolution. Cambridge: Cambridge University Press, 1959. Snyder, Rachel Louise. Fugitive Denim: A Moving Story of People and Pants in the Borderless World of Global Trade. New York: W.W. Norton, 2008.Starcevic, Sladjana. "The Origin and Historical Development of Branding and Advertising in the Old Civilizations of Africa, Asia and Europe." Marketing 46.3 (2015): 179-96.Tikkanen, Amy. "Coco Chanel." Encyclopaedia Britannica. 19 Apr. 2019. 25 July 2019 <https://www.britannica.com/biography/Coco-Chanel>.Veblen, Thorstein. The Theory of the Leisure Class: An Economic Study in the Evolution of Institutions. London: Macmillan, 1975.Weir, Kirsten. "The Pain of Social Rejection." American Psychological Association 43.4 (2012): 50.Williamson, Judith. Decoding Advertisements: Ideology and Meaning in Advertising. Ideas in Progress. London: Boyars, 1978.

Photo by Alexander Grey on Unsplash ABSTRACT Current studies show that about half of transgender and gender-diverse (TGD) people wish to have children in the future. TGD patients who pursue gender-affirmation interventions must be aware of the impact that various treatments can have on fertility, as gender-affirming care through medical or surgical treatment can limit or alter reproductive potential. Many medical professional societies encourage providers to educate and counsel patients about the consequences of treatment and viable options for fertility preservation (FP) as early as possible, though patients may not be aware of all the family formation methods available. There is a significant need for a tool that thoroughly details not only the various opportunities for parenthood but the perceived cost, rates of success, and risks associated with each option. A fertility decision-aid would allow for a more robust informed consent process and shared decision-making for all individuals pursuing gender-affirming care. INTRODUCTION Over 1.6 million adults and youth in the United States, or about 0.6 percent of those age 13 and over, identify as transgender, according to a report released by The Williams Institute in June 2022.[1] Current studies show that approximately half of transgender and gender-diverse (TGD) people wish to have children in the future, which aligns with the rate of cisgender individuals who desire parenthood in some form.[2] Studies on parenthood show improved quality of life and mental health in TGD adults and decreased incidence of suicide in TGD women.[3] In one study, almost half of the TGD individuals who indicated an interest in parenthood said they wanted genetically related offspring.[4] However, medical or surgical therapies can limit reproductive potential.[5] Recent findings indicate that some TGD adults who underwent medical or surgical paths to affirmation regret decisions that may have led to their inability to have genetic children. Perhaps they did not know it was an option, faced barriers to care, or were not interested at the time.[6] Many medical professional societies, including the World Professional Association for Transgender Health (WPATH), the Endocrine Society, and the American College of Obstetrics and Gynecology, encourage providers to educate and counsel patients about the consequences of treatment and viable options for fertility preservation as early as possible.[7] This paper argues that TGD patients who pursue gender-affirmation interventions must be aware of the impact treatments can have on fertility and, ultimately, parenthood and that a design tool may help them understand the risks and make informed decisions. l. Gender Affirmation Options Some TGD individuals do not use medical or surgical therapies to feel affirmed in their identity.[8] Non-medical paths to affirmation include social and legal measures.[9] These reversible paths do not impact the individual’s future fertility potential. TGD individuals can follow different paths of gender-affirming care through social, legal, medical, and surgical affirmation.[10] Social affirmation can include using gender-affirming pronouns, names, and clothing.[11] Legal affirmation can include changing the gender and name on a birth certificate and other records in states where this is permissible.[12] Social and legal affirmations are reversible and do not impact fertility potential. Medical affirmation involves the use of gender-affirming hormone therapy. Feminizing or masculinizing hormone therapy allows for the development of secondary sex characteristics that more closely align with the individual's gender identity.[13] No set regimen for treatment exists, as a patient’s goals will determine their individualized plan.[14] Some standard feminizing agents include estrogen, androgen-reducing medications, and progestins, while the common masculinizing agent is testosterone.[15] Gender-affirming hormone therapy is not currently seen as a definitive cause of infertility, as it is possible to discontinue treatment and see a noted reversal of intended effects.[16] Research findings suggest that hormone therapy should stop for a minimum of three months to reverse any treatment effects.[17] The only available data on long-term hormonal therapy use is inconsistent, based on observational studies with varying duration and doses.[18] Individuals can stop gender-affirming hormone therapy, but its lasting impact on fertility is unknown.[19] A TGD individual may choose to undergo surgical interventions that do not impact fertility. These interventions can masculinize or feminize body parts to allow a patient’s physical appearance to align with their gender identity.[20] This care could include breast augmentation for TGD women and Adam’s apple reduction or breast reduction for TGD men.[21] Other surgical interventions will impact TGD individuals’ fertility. Genital surgery for a TGD woman can include the removal of the penis and scrotum (penectomy and orchiectomy) and the construction of a vagina and labia (vaginoplasty and valvuloplasty).[22] A TGD man can have removal of the ovaries and uterus (oophorectomy and hysterectomy) and construction of a penis and scrotum (metoidioplasty, phalloplasty, and scrotoplasty).[23] Following these gender-affirming surgeries, individuals are infertile due to the removal of their reproductive organs.[24] These procedures are irreversible and directly impact reproductive capacity in TGD individuals. ll. Fertility Counseling to Explain Paths to Parenthood Patients receiving gender-affirming care should have the opportunity to learn about the various ways to achieve parenthood, including fertility preservation. Family formation methods include sexual intercourse, artificial insemination, surrogacy, and adoption or foster care.[25] These methods apply to non-TGD people as well. Patients may not be aware of the various means of family-building, so accurate and expansive fertility counseling is essential before initiating medical or surgical affirming care. The frequency with which TGD individuals receive fertility counseling and how thorough it is, is unclear. When surveyed about fertility preservation, healthcare providers reported a lack of confidence in discussing fertility preservation with patients due to gaps in their knowledge on best practices, success rates, and regret rates in patients who did not preserve fertility. They also had varied perceptions of their role in treating patients and whether they should discuss family planning.[26] Patients have reported receiving an overview of fertility options from their primary transgender-healthcare providers before being referred to reproductive specialists.[27] While this is an essential step for patients seeking more information about their opportunities for parenthood, only 16 percent of Society for Assisted Reproductive Technology member clinics share information about options for transgender individuals on their websites.[28] Providers of transgender health care do not, and may not be trained to, provide adequate counsel to patients. Patients also cannot give informed consent for fertility or gender-affirming care interventions without more information on the benefits and burdens of all available treatments. Current literature demonstrates a need for a decision aid that thoroughly details not only the opportunities for parenthood but the perceived cost, rates of success, and risks associated with each option.[29] This tool could foster a more informed dialogue between an individual and their care team. A fertility decision aid would also allow for a more robust informed consent process for all individuals pursuing gender-affirming care. Regardless of the affirmation path chosen, a TGD individual should have early and frequent conversations with their care team regarding fertility. The World Professional Association for Transgender Health (WPATH) asserts that healthcare professionals should discuss fertility preservation options before initiating gender-affirming hormone therapy or surgery. The American College of Obstetrics and Gynecology states that “fertility and parenting desires should be discussed early in the process of transition, before the initiation of hormone therapy or gender affirmation surgery.”[30] The Endocrine Society writes that “all individuals seeking gender-affirming medical treatment should receive information and counsel on options for fertility preservation prior to initiating puberty suppression in adolescents and prior to treating with hormonal therapy in both adolescents and adults."[31] These conversations are essential even if the patient is not interested in parenthood at the time. WPATH addresses the potential for regret, as cases of individuals who received hormone therapy and genital surgery and later desired genetically related children have been identified.[32] TGD patients pursuing gender-affirming care should assess their individual fertility goals to better understand the many ways to build a family. Surveys of TGD adults show that participants want to become parents in various ways. In one study, 31.3 percent of those surveyed wanted to become parents through adoption, 25 percent wanted children through sexual intercourse, 15.6 percent through surrogacy, 12.5 percent using donor sperm, 9.4 percent using a known sperm donor, and 6.3 percent through the foster care system.[33] TGD women showed a significant interest in adoption (75 percent of participants), whereas more than half of TGD men wanted to become parents through sexual intercourse or pregnancy (58.3 percent).[34] These fertility goals should be acknowledged and discussed with the care team to guide decision-making about fertility preservation. lll. Fertility Preservation Individuals who wish to share their genetic makeup with their child will usually need to speak with a reproductive specialist about fertility preservation options. They are the same as those for cisgender individuals using fertility services before cancer treatment or elective preservation.[35] For TGD adults with ovaries, this includes freezing embryos (using donor or partner sperm) or ovarian tissue.[36] While no longer viewed as an experimental treatment, professionals offer tissue freezing to few patients due to a lack of data on its safety and efficacy.[37] For TGD adults with testicles, freezing sperm and preserving testicular tissue can preserve the ability to have biological children.[38] Fertility preservation numbers for TGD adults remain low. A study showed that 76.6 percent of TGD men and 76.1 percent of TGD women considered fertility preservation, but only 3.1 percent and 9.6 percent, respectively, initiated it.[39] Success rate, cost, need for travel, and elevated risk of gender dysphoria likely lead to lower use of fertility preservation.[40] According to the American Society for Reproductive Medicine, the average cost of an IVF cycle in the US is $12,400.[41] Intrauterine insemination can range in cost from a few hundred dollars to $2,000 per cycle.[42] There are also associated costs to freeze and store sperm and eggs.[43] Insurance coverage and physical location impact the costs and how the patient bears the costs.[44] For those who do not have sufficient or any insurance coverage, fertility preservation may not be feasible. Of additional significance for this population, fertility preservation techniques can exacerbate gender dysphoria as the patient must produce gametes associated with the gender they do not recognize.[45] For TGD women, masturbating in a clinical setting or sperm banking for sperm cryopreservation can cause severe distress.[46] Furthermore, fertility preservation for TGD men can be challenging and invasive. A transvaginal ultrasound exam is a requirement for the cryopreservation of embryos and oocytes.[47] This exam can cause significant distress as the procedure does not align with their male identity.[48] Controlled ovarian stimulation cycles require two weeks of daily gonadotropin injections, and the patient is given anesthesia for oocyte retrieval.[49] Furthermore, TGD men undergoing fertility preservation must discontinue testosterone use, and menstruation can resume.[50] lV. Other Paths to Parenthood a. Adoption TGD adults can also pursue parenthood through adoption systems, though foster care is a temporary option. While almost one-third of surveyed TGD adults consider adoption a means to parenthood, cost and fear of discrimination can prevent them from following through.[51] TGD individuals have expressed a reluctance to pursue adoption due to the fear of discrimination by adoption agencies, attorneys, or families.[52] Nineteen states in the US allow child welfare agencies to refuse to provide services to LGBTQ+ families if it conflicts with the religious beliefs of the relevant people in the agency.[53] Nineteen states have no laws about discrimination during the adoption process based on sexual orientation or gender identity.[54] Only 29 states have statutory or regulatory protections against discrimination based on orientation and gender identity.[55] b. Surrogacy There are two types of surrogacies: traditional and gestational.[56] In traditional surrogacy, professionals fertilize the surrogate’s egg by the sperm of an intended parent or a sperm donor through intrauterine insemination. In gestational surrogacy, the surrogate undergoes IVF to implant the fertilized embryo.[57] Egg donation can be used for gestational surrogacy if necessary. Those considering surrogacy need to understand the specific laws in their state, as they can differ significantly.[58] c. Intercourse TGD individuals who have not undergone genital surgery can have intercourse with the intention of causing pregnancy. TGD men who have not had genital surgery can bear children. For those who have initiated hormonal therapy, limited data has been collected on the impact of gender-affirming hormone therapy on conception.[59] TGD men have gotten pregnant after discontinuing testosterone use.[60] TGD women who have not had genital surgery can have intercourse with a person with ovaries and produce sperm to fertilize an egg. Gender-affirming hormone therapy possibly affects sperm viability.[61] V. A Decision Aid to Support Informed Consent and Shared Decision Making For individuals pursuing gender-affirming care, time is of the essence when considering fertility preservation. In one review, transgender health doctors reported that most patients did not want to postpone treatment for fertility preservation procedures, even if they wanted children;[62] any delay in treatment can be distressing for those with gender dysphoria.[63] Providers face several challenges when counseling patients about fertility. The WPATH guidelines pose an ethical dilemma for transgender health providers as limited data offers guidance about discussing fertility risks and recommendations with patients.[64] For TGD patients, limited and contradictory data about fertility outcomes before, during, and after gender affirmation exists, particularly for the lasting impact of gender-affirming hormone therapy.[65] For TGD women who have taken estrogen and stopped to pursue fertility preservation, data on sperm quality is mixed.[66] The data on when normal ovarian function resumes is variable for TGD men using testosterone who have stopped to pursue fertility preservation.[67] Much data comes from the oncofertility literature, which indicates that when providers use standardized counseling practices when discussing fertility with their patients, more patients undergo fertility preservation, and patient satisfaction increases.[68] For individuals seeking gender-affirming care, there is a need for a decision aid that providers can utilize across multiple clinics and programs.[69],[70] Patients must be aware of the benefits, risks, and alternatives of any intervention to provide truly informed consent. When discussing fertility for TGD patients, this includes which fertility options are available at each stage of transition and the potential for a live birth with each option.[71] Furthermore, a decision aid would allow for shared decision-making, where the patient is an active participant and co-designer of their treatment plan.[72] Shared decision-making acknowledges the healthcare provider’s beneficence, knowledge, and experience while equally valuing the right to patient autonomy and respecting the ability of the patient to inform the provider.[73] A decision aid can help initiate the conversations between a patient and their provider that allow for a true partnership in decision-making. A recent study investigated the efficacy and impact of a web-based fertility decision aid targeted at TGD adolescents and young adults.[74] This tool, titled Aid for Fertility-Related Medical Decisions (AFFRMED), significantly increased fertility knowledge in both youth and their parents while improving youth’s perceived ability to make fertility decisions.[75] Youth participants and their parents found the tool “feasible, acceptable, and usable.”[76] This initial study was small, with only eight adolescents or young adults and seven parents participating.[77] At large, the effectiveness of the trial will be the next step in determining the legitimacy of the aid for clinical use.[78] A similar decision-making tool designed for TGD adults would also be useful. The tool can present an average range of expected costs as much variability exists and costs change over time. This tool should also include general information on what is required to pursue each path to parenthood. For example, a patient undergoing fertility preservation needs to know what steps are necessary after the cryopreservation of gametes for live birth.[79] CONCLUSION Individuals pursuing gender-affirming care must closely consider the impact of their medical and surgical care on their desire to become parents as early in their affirmation journey as possible. A decision aid can be helpful if it outlines the risks to fertility and options to preserve fertility, with the specific data necessary to make an informed choice. The tool should include the methods of fertility preservation, each step of the protocol and respective risks for each method, the expected timeline from initiation to completion, general success rates, options for remaining gamete disposition, and the average cost of treatment. This should include a list of steps to initiate the process for each method and any potential barriers or obstacles. For surrogacy, the tool should include the two types and the average cost. For intercourse, the aid should include information on risks for discontinuing gender-affirming hormone therapy and general success rates. Clinics and providers could elect to tailor the decision aid for their population to include specific information about local laws and the availability of services. With a standardized fertility decision aid, TGD individuals can have a more thorough understanding of the opportunities and limitations placed on their reproductive capacity. Healthcare providers can feel more confident that their patients have access to relevant information regarding family-building before initiating medical or surgical affirmation. This allows for a more substantial informed consent and shared decision-making process, regardless of the decision made. A trial-tested decision-making tool for TGD adolescents and young adults exists that can serve as a model for creating aid for TGD adults of all ages. A fertility decision aid designed explicitly for TGD adults of reproductive age would be invaluable to support patients and healthcare providers in transgender health. - [1] Herman, J.L., Flores, A.R., O’Neill, K.K. (2022). How Many Adults and Youth Identify as Transgender in the United States? The Williams Institute, UCLA School of Law [2] Moravek M. B. (2019). Fertility preservation options for transgender and gender-nonconforming individuals. Current opinion in obstetrics & gynecology, 31(3), 170–176. https://doi.org/10.1097/GCO.0000000000000537 [3] Moravek (2019). [4] Moravek (2019). [5] Access to fertility services by transgender persons: an Ethics Committee opinion. (2015). Access to fertility services by transgender persons: an Ethics Committee opinion. Fertility and Sterility, 104(5), 1111–1115. https://doi.org/10.1016/j.fertnstert.2015.08.021 [6] Harris, R. M., Kolaitis, I. N., & Frader, J. E.. (2020). Ethical issues involving fertility preservation for transgender youth. Journal of Assisted Reproduction and Genetics, 37(10), 2453–2462. https://doi.org/10.1007/s10815-020-01873-9 [7] Bizic, M. R., Jeftovic, M., Pusica, S., Stojanovic, B., Duisin, D., Vujovic, S., Rakic, V., & Djordjevic, M. L. (2018). Gender Dysphoria: Bioethical Aspects of Medical Treatment. BioMed research international, 2018, 9652305. https://doi.org/10.1155/2018/9652305 [8] Rafferty, J., COMMITTEE ON PSYCHOSOCIAL ASPECTS OF CHILD AND FAMILY HEALTH, COMMITTEE ON ADOLESCENCE, & SECTION ON LESBIAN, GAY, BISEXUAL, AND TRANSGENDER HEALTH AND WELLNESS (2018). Ensuring Comprehensive Care and Support for Transgender and Gender-Diverse Children and Adolescents. Pediatrics, 142(4), e20182162. https://doi.org/10.1542/peds.2018-2162 [9] Rafferty (2018). [10] Rafferty (2018). [11] Rafferty (2018). [12] Rafferty (2018). [13] Rafferty (2018). [14] WPATH (2012). [15] WPATH (2012). [16] Bizic (2018). [17] Bizic (2018). [18] Moravek (2019). [19] Finlayson, C., Johnson, E. K., Chen, D., Dabrowski, E., Gosiengfiao, Y., Campo-Engelstein, L., Rosoklija, I., Jacobson, J., Shnorhavorian, M., Pavone, M. E., Moravek, M. B., Bonifacio, H. J., Simons, L., Hudson, J., Fechner, P. Y., Gomez-Lobo, V., Kadakia, R., Shurba, A., Rowell, E., & Woodruff, T. K.. (2016). Proceedings of the Working Group Session on Fertility Preservation for Individuals with Gender and Sex Diversity. Transgender Health, 1(1), 99–107. https://doi.org/10.1089/trgh.2016.0008 [20] Cheng, P. J., Pastuszak, A. W., Myers, J. B., Goodwin, I. A., & Hotaling, J. M.. (2019). Fertility concerns of the transgender patient. Translational Andrology and Urology, 8(3), 209–218. https://doi.org/10.21037/tau.2019.05.09 [21] Cheng (2019). [22] WPATH (2012). [23] WPATH (2012). [24] Bizic (2018). [25] Tornello, S. L., & Bos, H. (2017). Parenting Intentions Among Transgender Individuals. LGBT health, 4(2), 115–120. https://doi.org/10.1089/lgbt.2016.0153 [26] Sterling (2020). [27] Sterling (2020). [28] Sterling (2020). [29] Sterling (2020). [30] Health care for transgender and gender diverse individuals. ACOG Committee Opinion No. 823. American College of Obstetricians and Gynecologists. Obstet Gynecol 2021;137:e75–88. [31] Hembree (2017). [32] WPATH (2012). [33] Tornello (2017). [34] Tornello (2017). [35] Moravek (2019). [36] Wiesenthal (2022). [37] Choi, J. Y., & Kim, T. J.. (2022). Fertility Preservation and Reproductive Potential in Transgender and Gender Fluid Population. Biomedicines, 10(9), 2279. https://doi.org/10.3390/biomedicines10092279 [38] Wiesenthal (2022). [39] Mayhew (2020). [40] Sterling (2020). [41] American Society of Reproductive Medicine. (n.d.). Is in vitro fertilization expensive? In Vitro Fertilization (IVF). Retrieved November 28, 2022, from https://www.reproductivefacts.org/faqs/frequently-asked-questions-about-infertility/q06-is-in-vitro-fertilization-expensive/ [42] American Society of Reproductive Medicine. (n.d.). The difference between IUI and IVF - A patient education micro-video. Reproductive Facts. Retrieved November 20, 2022, from https://www.reproductivefacts.org/resources/educational-videos/videos/asrmsart-micro-videos/videos/the-difference-between-iui-and-ivf/ [43] Family Equality (2019). [44] Sterling (2020). [45] Bizic (2018). [46] Bizic (2018). [47] Choi (2022). [48] Bizic (2018). [49] Choi (2022). [50] Choi (2022). [51] Tornello (2017). [52] Brown, C.. (2021). Exploring trans people’s experiences of adoption and fostering in the United Kingdom: A qualitative study. International Journal of Transgender Health, 22(1-2), 89–100. https://doi.org/10.1080/26895269.2020.1867396 [53] Movement Advancement Project. "Equality Maps: Foster and Adoption Laws." https://www.lgbtmap.org/equality-maps/foster_and_adoption_laws. Accessed 10/28/2022. [54] Movement Advancement Project. “Equality Maps: Foster and Adoption Laws” (2022). [55] Movement Advancement Project. “Equality Maps: Foster and Adoption Laws” (2022). [56] Torres, G., Shapiro, A., & Mackey, T. K.. (2019). A review of surrogate motherhood regulation in south American countries: pointing to a need for an international legal framework. BMC Pregnancy and Childbirth, 19(1). https://doi.org/10.1186/s12884-019-2182-1 [57] Family building through gestational surrogacy. Committee Opinion No. 660. American College of Obstetricians and Gynecologists. Obstet Gynecol 2016;127:e97–103. [58] Family building through gestational surrogacy (2016). [59] Light, A. D., Obedin-Maliver, J., Sevelius, J. M., & Kerns, J. L.. (2014). Transgender Men Who Experienced Pregnancy After Female-to-Male Gender Transitioning. Obstetrics & Gynecology, 124(6), 1120–1127. https://doi.org/10.1097/aog.0000000000000540 [60] Obedin-Maliver, J., & Makadon, H. J.. (2016). Transgender men and pregnancy. Obstetric Medicine, 9(1), 4–8. https://doi.org/10.1177/1753495x15612658 [61] Choi (2022). [62] Bizic (2018). [63] Finlayson (2016). [64] Moravek (2019). [65] Mayhew, A. C., & Gomez-Lobo, V.. (2020). Fertility Options for the Transgender and Gender Nonbinary Patient. The Journal of Clinical Endocrinology & Metabolism, 105(10), 3335–3345. https://doi.org/10.1210/clinem/dgaa529 [66] Mayhew (2020). [67] Mayhew (2020). [68] Sterling (2020). [69] Kolbuck, V. D., Sajwani, A., Kyweluk, M. A., Finlayson, C., Gordon, E. J., & Chen, D.. (2020). Formative development of a fertility decision aid for transgender adolescents and young adults: a multidisciplinary Delphi consensus study. Journal of Assisted Reproduction and Genetics, 37(11), 2805–2816. https://doi.org/10.1007/s10815-020-01947-8 [70] Sterling (2020). [71] Sterling (2020). [72] De Snoo-Trimp, J., De Vries, A., Molewijk, B., & Hein, I.. (2022). How to deal with moral challenges around the decision-making competence in transgender adolescent care? Development of an ethics support tool. 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Introduction I think the Privacy Act is a huge edifice to protect the minority of things that could go wrong. I’ve got a good example for you, I’m just trying to think … yeah the worst one I’ve ever seen was the Balga Youth Program where we took these students on a reward excursion all the way to Fremantle and suddenly this very alienated kid started to jump under a bus, a moving bus so the kid had to be restrained. The cops from Fremantle arrived because all the very good people in Fremantle were alarmed at these grown-ups manhandling a kid and what had happened is that DCD [Department of Community Development] had dropped him into the program but hadn’t told us that this kid had suicide tendencies. No, it’s just chronically bad. And there were caseworkers involved and … there is some information that we have to have that doesn’t get handed down. Rather than a blanket rule that everything’s confidential coming from them to us, and that was a real live situation, and you imagine how we’re trying to handle it, we had taxis going from Balga to Fremantle to get staff involved and we only had to know what to watch out for and we probably could have … well what you would have done is not gone on the excursion I suppose (School Principal, quoted in Balnaves and Luca 49). These comments are from a school principal in Perth, Western Australia in a school that is concerned with “at-risk” students, and in a context where the Commonwealth Privacy Act 1988 has imposed limitations on their work. Under this Act it is illegal to pass health, personal or sensitive information concerning an individual on to other people. In the story cited above the Department of Community Development personnel were apparently protecting the student’s “negative right”, that is, “freedom from” interference by others. On the other hand, the principal’s assertion that such information should be shared is potentially a “positive right” because it could cause something to be done in that person’s or society’s interests. Balnaves and Luca noted that positive and negative rights have complex philosophical underpinnings, and they inform much of how we operate in everyday life and of the dilemmas that arise (49). For example, a ban on euthanasia or the “assisted suicide” of a terminally ill person can be a “positive right” because it is considered to be in the best interests of society in general. However, physicians who tacitly approve a patient’s right to end their lives with a lethal dose by legally prescribed dose of medication could be perceived as protecting the patient’s “negative right” as a “freedom from” interference by others. While acknowledging the merits of collaboration between people who are working to improve the wellbeing of students “at-risk”, this paper examines some of the barriers to collaboration. Based on both primary and secondary sources, and particularly on oral testimonies, the paper highlights the tension between privacy as a negative right and collaborative helping as a positive right. It also points to other difficulties and dilemmas within and between the institutions engaged in this joint undertaking. The authors acknowledge Michel Foucault’s contention that discourse is power. The discourse on privacy and the sharing of information in modern societies suggests that privacy is a negative right that gives freedom from bureaucratic interference and protects the individual. However, arguably, collaboration between agencies that are working to support individuals “at-risk” requires a measured relaxation of the requirements of this negative right. Children and young people “at-risk” are a case in point. Towards Collaboration From a series of interviews conducted in 2004, the school authorities at Balga Senior High School and Midvale Primary School, people working for the Western Australian departments of Community Development, Justice, and Education and Training in Western Australia, and academics at the Edith Cowan and Curtin universities, who are working to improve the wellbeing of students “at-risk” as part of an Australian Research Council (ARC) project called Smart Communities, have identified students “at-risk” as individuals who have behavioural problems and little motivation, who are alienated and possibly violent or angry, who under-perform in the classroom and have begun to truant. They noted also that students “at-risk” often suffer from poor health, lack of food and medication, are victims of unwanted pregnancies, and are engaged in antisocial and illegal behaviour such as stealing cars and substance abuse. These students are also often subject to domestic violence (parents on drugs or alcohol), family separation, and homelessness. Some are depressed or suicidal. Sometimes cultural factors contribute to students being regarded as “at-risk”. For example, a social worker in the Smart Communities project stated: Cultural factors sometimes come into that as well … like with some Muslim families … they can flog their daughter or their son, usually the daughter … so cultural factors can create a risk. Research elsewhere has revealed that those children between the ages of 11-17 who have been subjected to bullying at school or physical or sexual abuse at home and who have threatened and/or harmed another person or suicidal are “high-risk” youths (Farmer 4). In an attempt to bring about a positive change in these alienated or “at-risk” adolescents, Balga Senior High School has developed several programs such as the Youth Parents Program, Swan Nyunger Sports Education program, Intensive English Centre, and lower secondary mainstream program. The Midvale Primary School has provided services such as counsellors, Aboriginal child protection workers, and Aboriginal police liaison officers for these “at-risk” students. On the other hand, the Department of Community Development (DCD) has provided services to parents and caregivers for children up to 18 years. Academics from Edith Cowan and Curtin universities are engaged in gathering the life stories of these “at-risk” students. One aspect of this research entails the students writing their life stories in a secured web portal that the universities have developed. The researchers believe that by engaging the students in these self-exploration activities, they (the students) would develop a more hopeful outlook on life. Though all agencies and educational institutions involved in this collaborative project are working for the well-being of the children “at-risk”, the Privacy Act forbids the authorities from sharing information about them. A school psychologist expressed concern over the Privacy Act: When the Juvenile Justice Department want to reintroduce a student into a school, we can’t find out anything about this student so we can’t do any preplanning. They want to give the student a fresh start, so there’s always that tension … eventually everyone overcomes [this] because you realise that the student has to come to the school and has to be engaged. Of course, the manner and consequences of a student’s engagement in school cannot be predicted. In the scenario described above students may have been given a fair chance to reform themselves, which is their positive right but if they turn out to be at “high risk” it would appear that the Juvenile Department protected the negative right of the students by supporting “freedom from” interference by others. Likewise, a school health nurse in the project considered confidentiality or the Privacy Act an important factor in the security of the student “at-risk”: I was trying to think about this kid who’s one of the children who has been sexually abused, who’s a client of DCD, and I guess if police got involved there and wanted to know details and DCD didn’t want to give that information out then I’d guess I’d say to the police “Well no, you’ll have to talk to the parents about getting further information.” I guess that way, recognising these students are minor and that they are very vulnerable, their information … where it’s going, where is it leading? Who wants to know? Where will it be stored? What will be the outcomes in the future for this kid? As a 14 year old, if they’re reckless and get into things, you know, do they get a black record against them by the time they’re 19? What will that information be used for if it’s disclosed? So I guess I become an advocate for the student in that way? Thus the nurse considers a sexually abused child should not be identified. It is a positive right in the interest of the person. Once again, though, if the student turns out to be at “high risk” or suicidal, then it would appear that the nurse was protecting the youth’s negative right—“freedom from” interference by others. Since collaboration is a positive right and aims at the students’ welfare, the workable solution to prevent the students from suicide would be to develop inter-agency trust and to share vital information about “high-risk” students. Dilemmas of Collaboration Some recent cases of the deaths of young non-Caucasian girls in Western countries, either because of the implications of the Privacy Act or due to a lack of efficient and effective communication and coordination amongst agencies, have raised debates on effective child protection. For example, the British Laming report (2003) found that Victoria Climbié, a young African girl, was sent by her parents to her aunt in Britain in order to obtain a good education and was murdered by her aunt and aunt’s boyfriend. However, the risk that she could be harmed was widely known. The girl’s problems were known to 6 local authorities, 3 housing authorities, 4 social services, 2 child protection teams, and the police, the local church, and the hospital, but not to the education authorities. According to the Laming Report, her death could have been prevented if there had been inter-agency sharing of information and appropriate evaluation (Balnaves and Luca 49). The agencies had supported the negative rights of the young girl’s “freedom from” interference by others, but at the cost of her life. Perhaps Victoria’s racial background may have contributed to the concealment of information and added to her disadvantaged position. Similarly, in Western Australia, the Gordon Inquiry into the death of Susan Taylor, a 15 year old girl Aboriginal girl at the Swan Nyungah Community, found that in her short life this girl had encountered sexual violation, violence, and the ravages of alcohol and substance abuse. The Gordon Inquiry reported: Although up to thirteen different agencies were involved in providing services to Susan Taylor and her family, the D[epartment] of C[ommunity] D[evelopment] stated they were unaware of “all the services being provided by each agency” and there was a lack of clarity as to a “lead coordinating agency” (Gordon et al. quoted in Scott 45). In this case too, multiple factors—domestic, racial, and the Privacy Act—may have led to Susan Taylor’s tragic end. In the United Kingdom, Harry Ferguson noted that when a child is reported to be “at-risk” from domestic incidents, they can suffer further harm because of their family’s concealment (204). Ferguson’s study showed that in 11 per cent of the 319 case sample, children were known to be re-harmed within a year of initial referral. Sometimes, the parents apply a veil of secrecy around themselves and their children by resisting or avoiding services. In such cases the collaborative efforts of the agencies and education may be thwarted. Lack of cultural education among teachers, youth workers, and agencies could also put the “at-risk” cultural minorities into a high risk category. For example, an “at-risk” Muslim student may not be willing to share personal experiences with the school or agencies because of religious sensitivities. This happened in the UK when Khadji Rouf was abused by her father, a Bangladeshi. Rouf’s mother, a white woman, and her female cousin from Bangladesh, both supported Rouf when she finally disclosed that she had been sexually abused for over eight years. After group therapy, Rouf stated that she was able to accept her identity and to call herself proudly “mixed race”, whereas she rejected the Asian part of herself because it represented her father. Other Asian girls and young women in this study reported that they could not disclose their abuse to white teachers or social workers because of the feeling that they would be “letting down their race or their Muslim culture” (Rouf 113). The marginalisation of many Muslim Australians both in the job market and in society is long standing. For example, in 1996 and again in 2001 the Muslim unemployment rate was three times higher than the national total (Australian Bureau of Statistics). But since the 9/11 tragedy and Bali bombings visible Muslims, such as women wearing hijabs (headscarves), have sometimes been verbally and physically abused and called ‘terrorists’ by some members of the wider community (Dreher 13). The Howard government’s new anti-terrorism legislation and the surveillance hotline ‘Be alert not alarmed’ has further marginalised some Muslims. Some politicians have also linked Muslim asylum seekers with terrorists (Kabir 303), which inevitably has led Muslim “at-risk” refugee students to withdraw from school support such as counselling. Under these circumstances, Muslim “at-risk” students and their parents may prefer to maintain a low profile rather than engage with agencies. In this case, arguably, federal government politics have exacerbated the barriers to collaboration. It appears that unfamiliarity with Muslim culture is not confined to mainstream Australians. For example, an Aboriginal liaison police officer engaged in the Smart Communities project in Western Australia had this to say about Muslim youths “at-risk”: Different laws and stuff from different countries and they’re coming in and sort of thinking that they can bring their own laws and religions and stuff … and when I say religions there’s laws within their religions as well that they don’t seem to understand that with Australia and our laws. Such generalised misperceptions of Muslim youths “at-risk” would further alienate them, thus causing a major hindrance to collaboration. The “at-risk” factors associated with Aboriginal youths have historical connections. Research findings have revealed that indigenous youths aged between 10-16 years constitute a vast majority in all Australian States’ juvenile detention centres. This over-representation is widely recognised as associated with the nature of European colonisation, and is inter-related with poverty, marginalisation and racial discrimination (Watson et al. 404). Like the Muslims, their unemployment rate was three times higher than the national total in 2001 (ABS). However, in 1998 it was estimated that suicide rates among Indigenous peoples were at least 40 per cent higher than national average (National Advisory Council for Youth Suicide Prevention, quoted in Elliot-Farrelly 2). Although the wider community’s unemployment rate is much lower than the Aboriginals and the Muslims, the “at-risk” factors of mainstream Australian youths are often associated with dysfunctional families, high conflict, low-cohesive families, high levels of harsh parental discipline, high levels of victimisation by peers, and high behavioural inhibition (Watson et al. 404). The Macquarie Fields riots in 2005 revealed the existence of “White” underclass and “at-risk” people in Sydney. Macquarie Fields’ unemployment rate was more than twice the national average. Children growing up in this suburb are at greater risk of being involved in crime (The Age). Thus small pockets of mainstream underclass youngsters also require collaborative attention. In Western Australia people working on the Smart Communities project identified that lack of resources can be a hindrance to collaboration for all sectors. As one social worker commented: “government agencies are hierarchical systems and lack resources”. They went on to say that in their department they can not give “at-risk” youngsters financial assistance in times of crisis: We had a petty cash box which has got about 40 bucks in it and sometimes in an emergency we might give a customer a couple of dollars but that’s all we can do, we can’t give them any larger amount. We have bus/metro rail passes, that’s the only thing that we’ve actually got. A youth worker in Smart Communities commented that a lot of uncertainty is involved with young people “at-risk”. They said that there are only a few paid workers in their field who are supported and assisted by “a pool of volunteers”. Because the latter give their time voluntarily they are under no obligation to be constant in their attendance, so the number of available helpers can easily fluctuate. Another youth worker identified a particularly important barrier to collaboration: because of workers’ relatively low remuneration and high levels of work stress, the turnover rates are high. The consequence of this is as follows: The other barrier from my point is that you’re talking to somebody about a student “at-risk”, and within 14 months or 18 months a new person comes in [to that position] then you’ve got to start again. This way you miss a lot of information [which could be beneficial for the youth]. Conclusion The Privacy Act creates a dilemma in that it can be either beneficial or counter-productive for a student’s security. To be blunt, a youth who has suicided might have had their privacy protected, but not their life. Lack of funding can also be a constraint on collaboration by undermining stability and autonomy in the workforce, and blocking inter-agency initiatives. Lack of awareness about cultural differences can also affect unity of action. The deepening inequality between the “haves” and “have-nots” in the Australian society, and the Howard government’s harshness on national security issues, can also pose barriers to collaboration on youth issues. Despite these exigencies and dilemmas, it would seem that collaboration is “the only game” when it comes to helping students “at-risk”. To enhance this collaboration, there needs to be a sensible modification of legal restrictions to information sharing, an increase in government funding and support for inter-agency cooperation and informal information sharing, and an increased awareness about the cultural needs of minority groups and knowledge of the mainstream underclass. Acknowledgments The research is part of a major Australian Research Council (ARC) funded project, Smart Communities. The authors very gratefully acknowledge the contribution of the interviewees, and thank *Donald E. Scott for conducting the interviews. References Australian Bureau of Statistics. 1996 and 2001. Balnaves, Mark, and Joe Luca. “The Impact of Digital Persona on the Future of Learning: A Case Study on Digital Repositories and the Sharing of Information about Children At-Risk in Western Australia”, paper presented at Ascilite, Brisbane (2005): 49-56. 10 April 2006. http://www.ascilite.org.au/conferences/brisbane05/blogs/proceedings/ 06_Balnaves.pdf>. Dreher, Tanya. ‘Targeted’: Experiences of Racism in NSW after September 11, 2001. Sydney: University of Technology, 2005. Elliot-Farrelly, Terri. “Australian Aboriginal Suicide: The Need for an Aboriginal Suicidology”? Australian e-Journal for the Advancement of Mental Health, 3.3 (2004): 1-8. 15 April 2006 http://www.auseinet.com/journal/vol3iss3/elliottfarrelly.pdf>. Farmer, James. A. High-Risk Teenagers: Real Cases and Interception Strategies with Resistant Adolescents. Springfield, Ill.: C.C. Thomas, 1990. Ferguson, Harry. Protecting Children in Time: Child Abuse, Child Protection and the Consequences of Modernity. London: Palgrave Macmillan, 2004. Foucault, Michel. Power/Knowledge: Selected Interviews and Other Writings, 1972-1977. Ed. Colin Gordon, trans. Colin Gordon et al. New York: Pantheon, 1980. Kabir, Nahid. Muslims in Australia: Immigration, Race Relations and Cultural History. London: Kegan Paul, 2005. Rouf, Khadji. “Myself in Echoes. My Voice in Song.” Ed. A. Bannister, et al. Listening to Children. London: Longman, 1990. Scott E. Donald. “Exploring Communication Patterns within and across a School and Associated Agencies to Increase the Effectiveness of Service to At-Risk Individuals.” MS Thesis, Curtin University of Technology, August 2005. The Age. “Investing in People Means Investing in the Future.” The Age 5 March, 2005. 15 April 2006 http://www.theage.com.au>. Watson, Malcolm, et al. “Pathways to Aggression in Children and Adolescents.” Harvard Educational Review, 74.4 (Winter 2004): 404-428. Citation reference for this article MLA Style Kabir, Nahid, and Mark Balnaves. "Students “at Risk”: Dilemmas of Collaboration." M/C Journal 9.2 (2006). echo date('d M. Y'); ?> <http://journal.media-culture.org.au/0605/04-kabirbalnaves.php>. APA Style Kabir, N., and M. Balnaves. (May 2006) "Students “at Risk”: Dilemmas of Collaboration," M/C Journal, 9(2). Retrieved echo date('d M. Y'); ?> from <http://journal.media-culture.org.au/0605/04-kabirbalnaves.php>.

IntroductionA catastrophe is often considered to be a final decisive event, resulting in a disastrous end. Two recent examples of catastrophes satisfying this definition were the 2012 super storm Sandy in the United States of America and the 2011 floods in Brisbane, Australia. The progress of these disasters was reported worldwide, yet coverage soon disappeared from the headlines, leaving people to deal with the aftermath of rebuilding homes, businesses and lives. The diagnosis of breast cancer is an individual’s catastrophic event. While not on the community-wide scale of the disasters mentioned previously, it can have disastrous effects on the individual as well as their family and friends. At the moment 1 in 8 women can expect to have a breast cancer diagnosis. In Australia alone this means approximately 1,375,000 people are likely to receive this diagnosis in the course of their lifetime. This article addresses how breast cancer can and does prompt women and their supportive friends, families and partners to become more creative as a result of the breast cancer (BC) diagnosis. In these cases, creativity—defined as doing something a little differently or thinking outside the square—can offer some remedy for catastrophe. Becoming totally involved in the creative moment, so as to lose all track of time and forget the trials and worries of BC, is referred to as flow. Flow is an “optimal experience” in which “people become so involved in what they are doing that the activity becomes spontaneous, almost automatic; they stop being aware of themselves as separate from the actions they are performing” (Csikszentmihalyi 53). This is one fruit of the creative process. This article refers to women as having breast cancer because the majority of people diagnosed with BC are women. However it is acknowledged that men constitute 0.8% of the total number of people diagnosed with BC (Breast Cancer in Australia). Responding to public concern, a range of charities has been formed to support people with breast cancer. One such charity is Breast Cancer Care WA (BCCWA). Together with the Australian Research Council (ARC) and Edith Cowan University (ECU), BCCWA supports an online community for people with breast cancer, Breast Cancer Click (Click). The membership of Click includes several male Clickers who are partners and supporters of Click members with BC. The Click online community consists of people with BC and their supporters, as well as health care practitioners and researchers. Those members with breast cancer are very interested in learning more about BC and supporting others in a similar situation whereas the health care practitioners and researchers are both supporting those with breast cancer and exploring the possibilities offered by online communities, to enhance their professional skills. Members of Click could be described as a community of practice, “groups of people informally bound together by shared expertise and passion for a joint enterprise” (Wenger and Snyder 139), in this case a passion for responding positively to a BC diagnosis. Wenger and Snyder go on to say: “People in communities of practice share their experiences and knowledge in free-flowing, creative ways that foster new approaches to problems” (140). The Click community helps foster creativity.Many of the verbatim quotes used in this article are taken from the www.breastcancerclick.com.au (Click) website. Instead of identifying a speaker with a personal attribution the term “Clicker” is used, and then qualified as a Clicker with breast cancer (BC) to differentiate the author from a Clicker who supports someone with breast cancer (Supporter). The Click website provides every member with an opportunity to express themselves and they often respond creatively to the challenges that confront them. The Chaos and Catastrophe of a Breast Cancer Diagnosis When a woman is first diagnosed with breast cancer, it is often as a result of her bi-annual mammogram. She expects a routine visit but is advised instead that she requires further investigation because abnormalities have been detected. This is not what she expected. Probably all previous mammograms have been normal. The personal catastrophe occurs when the woman receives a definitive diagnosis of breast cancer. Chaos is added to catastrophe as the patient and her family struggle to grasp the meaning of the diagnosis and the multiplicity of treatment options. For some, the diagnosis is quickly followed by another catastrophic event, the removal of one or both breasts. For others the catastrophe occurs by increments. This is evident in a member’s blog on the Click website,More surgery [...] dammit!!!!!!!!!! I just want this over NOW. The whole lot. I want my hair back, I want my working life back, I want the smile back on my man's face. I want ME back. I want to dance again. I want to have a conversation with friends that doesn't include my diagnosis or prognosis [...] short term, long term [...] any bloody term!!!! (Clicker BC) People with a breast cancer diagnosis do not always have an endpoint in sight, or an acceptable endpoint at all, and the chaos of treatment and recovery is focused on coping with the present and the next treatment on the horizon. This Clicker uses her blog to help her deal with the next stage of a seemingly interminable round of surgical and chemotherapeutic procedures which have thrown herself, her family, her friends and her work life into chaos. Other Clickers immediately responded to her angst with messages of support and understanding. Had this clicker not written a blog, she would not have received this support and consequently she may have coped less successfully with her treatment. Given the chaos and catastrophe inherent in a breast cancer diagnosis, what else can individuals do that makes a positive difference to their lives as they deal with the “treatment, wait, check” cycle that is the medical response to breast cancer? Creativity Arising from Chaos When people receive a life threatening diagnosis such as breast cancer, they sometimes choose to think outside the square, to do things a little differently, to change the way they relate to others, to learn a new art or craft or to take up a musical instrument. Being creative seems to provide distraction from the treatment, and may be something to look forward to when the treatment is over. Some choose to participate in a formal creative therapy program, others seek out a creative pursuit which they can do at home. For some women with a breast cancer diagnosis, joining the Click website is itself a creative act. Contributing to an online community with a common interest in BC which gives them unconditional support, such as Click, also provides them with new skills and allows other people to benefit from their advice and experience: Hi everyone. I know we all have different ways of dealing with our cancer. Mine has been to be more mindful of the wonders around me and savour every possible moment of joy. I have decided to start my own Blog to give myself a creative outlet and share my experiences. (Clicker BC) There may be a number of reasons for participating in an online community of people with breast cancer and their supporters. Whatever the motivation, it requires a person to think laterally and learn new skills in how to navigate and post to a website. A newbie member enters a relationship with people she hasn’t met. She can choose to create a new persona using an avatar, or simply devise a username which represents her online. Creativity, Click and Flow Susan Nesbit, an Associate Professor in the University of Manitoba’s occupational therapy department, was diagnosed with BC in 2000. She used “everyday creativity to maintain a good attitude and positive spirits” and refers to Csikszentmihalyi’s concept of “flow” to explain the gratifying experience which occurs when someone fully participates in an activity:that I am doing it for its own sake, and when I become so involved […] that I become spontaneous and almost automatic, I am experiencing flow. My energy flows smoothly, I feel relaxed, comfortable, energetic and totally absorbed, losing track of time. (Nesbit 63) Richards (489) describes creativity as having two conditions: one is originality and the other is meaningfulness. She argues that everyday creativity “in the multitudinous activities of day-to-day life […] has been conceptualised as a survival capability” (489). Click allows members to share this everyday creativity, inspiring a creative response in others. One Clicker (BC), who produces handmade cards at home, was inspired to hold a Skype card-making education session for rural and remote people (with and without BC).Today is a day of craft for me. I held my first remote workshop […] and it was a huge success. Just made a couple of Father's Day cards for a customer and decided to share some of my work with you all. I'd love you to take a peek at my album [...] doing what I love to do was and is my therapy to get me through each new crisis xxx. (Clicker BC) It seems this Clicker first achieved flow through the act of making cards for her own pleasure and then maintained that flow through the planning and execution of an online card making class, which was a great success. She found something that helped her to take control of her life and to live more fully and at the same time gave others the opportunity to do the same. The success of this session might inspire this Clicker to conduct more sessions for others, while those attending the session who may be battling a serious illness, might also achieve flow through absorption in the card-making process, then maintain flow through the positive responses they receive from recipients of these cards. Ripples in this online creative space reach out towards a widening pool of card makers, assisting them to cope with chaotic occurrences. Creative Therapy and Breast Cancer Some women may choose to participate in formal creative therapy programmes such as art therapy to help them deal with their cancer treatment. In general more women than men with cancer choose to use this creative response to help them cope (Geue et al. 168). This intervention when used with breast cancer patients has been shown to enhance psychological well-being by decreasing negative emotional states and enhancing positive ones (Puig et al. 224). For example, music therapy with a group of BC patients waiting for a chemotherapy cycle appeared to directly reduce patients’ anxiety and physiological arousal, while enhancing their sense of wellbeing and control (Bulfone et al. 241). Blogging and Breast Cancer The creative pursuit may already be part of woman’s “normal” or pre-diagnosis life, or may be identified and pursued as a result of the diagnosis and used as informal therapy to keep the chaos at bay, for example through joining a support website and blogging. Orgad’s research shows that when women write about their breast cancer story, “storytelling” online, it helps them cope with their disease. “The act of writing is seen as a crucial affirmation of living, a statement against fearfulness, invisibility and silence” (Lord qtd in. Orgad 67). The new ideas and direction for these women’s creativity may also be used to vent their feelings and to gain perspective on their breast cancer journey, or the story may be written to help others facing a similar journey. As evidenced by the collection of blogs at breastcancerblogs.org it seems a number of women find blogs offer a creative response to their breast cancer journey. The BC blogosphere is a vibrant record of resistance to the disease. Click members are encouraged to blog, and are given space on the site to do so, with full privacy if they choose. A study conducted by Chung and Kim (304) showed those cancer patients and their companions found blogging activity to be helpful in emotion management and for information sharing. The Clickers are also encouraged to complete a SWEE in their blog. SWEE stands for “structured written emotional expression” where a person writes about their breast cancer journey for 10-15 minutes each day for three to five days in a row. The Clicker has the opportunity to creatively express their positive and negative feelings about their breast cancer diagnosis. Research shows that writing a SWEE can be good for both physical and emotional health (Pennebaker 540; Lieberman, Morton and Goldstein 859; Butcher and Buckwalter 114; Stanton et al. 4165; Low, Stanton and Danoff-Burg 187). One Click member, the author of the Paw Paw Salad blog, received a top blog award from the breastcancerblogs website. She writes about her life with breast cancer and the stress of not knowing when or if she will ever be free of the disease. She is positive, however, about the Tamoxifen tablet she must take for another five years or more. She tries to only let the word “cancer” briefly enter her mind, once a day, when she takes her pill and to carry on as normal the rest of the time. On returning home from a camping trip, which she also described in her blog, she noted that her cancer medication bottle was looking battered and dirty.And for the first time, the sight of it made me smile. I've decided that this is just the way my Tamoxifen bottle should look. It’s not a bottle to be kept pristine in a medicine cabinet—I want it to be tossed into suitcases, kept cold in dust-covered eskies, dropped on the floor in the morning flurry. I'm hoping that my daily reminder of cancer will, as often as possible, be washed down with camp-stove coffee. And I’m thinking that the last pill of each year’s prescription demands a champagne and strawberry chaser (Paw Paw Salad). This post demonstrates the blogger’s ability to perceive and describe BC paraphernalia differently, and she uses this perspective to bolster her resilience in the face of the ongoing BC chaos in her life. Some Clickers express ambivalence towards taking Tamoxifen, a hormone based chemotherapeutic agent, because of its potentially deleterious side effects on their everyday sense of wellbeing. This blog entry may give them a new perspective on life, in spite of the possible side effects of the drug, and encourage them to celebrate the end of each year of taking the pill as one step towards being free of cancer. The fact that the writer can go camping while taking the Tamoxifen pill also demonstrates to others that life doesn’t have to stop. Mammoirs Some people with a BC diagnosis (non-Click members) have gone on to write what is affectionately called a “mammoir” a book which recounts their breast cancer journey or provides advice and information for those newly diagnosed with breast cancer. This is the term applied by Clickers even to established works of literature, such as Professor Brenda Walker’s award-winning “mammoir,” Reading by Moonlight: How Books Saved a Life. The book describes how Walker took refuge from the chaos of her breast cancer diagnosis in the books she’d always loved. Her experience of chaos prompted her to turn towards the creativity of others, which in turn triggered renewed creativity in the form of her memoir. Conclusion A diagnosis of breast cancer is for most women, a catastrophe. The newly diagnosed person is aware that this diagnosis may well be followed quite quickly by a mastectomy. Together with adjunct treatments, such as chemotherapy and/or radiotherapy, this causes chaos within the woman’s life, family and friendship networks. Each woman and her supporters deal with the catastrophe and ensuing chaos in their own individual creative way. Creative expressions include blogs, where women can tell their story; poetry, such as haikus and free verse; and simple venting of feelings about diagnosis and treatment. The SWEE technique seems to indicate that written engagement helps people cope with their diagnosis and illness. Attendance at art or music therapy sessions has been shown to be therapeutic and “mammoirs” have been written to help others to avoid the pitfalls of the health system or to deal with treatment and its side-effects. Both informal and formal or organised creative therapy appears to have positive psychological effects on the woman with breast cancer. Whether each individual with BC achieved flow, as described by Csikszentmihalyi, is not known, but it appears from the Click community that many do use everyday creative acts to help them deal with the ongoing chaos of their diagnosis and treatment. The Click was created to provide a blank canvas for those with breast cancer and their supporters to reach out to others in a similar situation. Through allowing people to respond creatively and to have those creative responses validated, this reaching out often also involves reaching in—and harnessing creativity. ReferencesAustralian Institute of Health and Welfare and Cancer Australia, 2012, Breast Cancer in Australia: An Overview, Cancer Series 71. CAN 67. Canberra: AIHW.Blog Nation. “breastcancerblogs.org.”2011-2012. 11 Mar. 2013 ‹http://www.breastcancerblogs.org/›. Breast Cancer Click. Breast Cancer Care WA. 2013. 6 Mar. 2013 ‹http://www.breastcancerclick.com.au›. Bulfone, Teresa, et al. "Effectiveness of Music Therapy for Anxiety Reduction in Women with Breast Cancer in Chemotherapy Treatment." Holistic Nursing Practice 23.4 (2009): 238-242. Butcher, Howard Karl, and K. Buckwalter. "Exasperations as Blessings: Meaning-Making and the Caregiving Experience." Journal of Aging and Identity 7.2 (2002): 113-132. Chung, Deborah S., and Sujin Kim. "Blogging Activity among Cancer Patients and Their Companions: Uses, Gratifications, and Predictors of Outcomes." Journal of the American Society for Information Science and Technology 59.2 (2007): 297-306. Csikszentmihalyi, Mihaly. Flow: The Psychology of Optimal Experience. New York: Harper and Row, 1990. Geue, Kristina, et al. "An Overview of Art Therapy Interventions for Cancer Patients and the Results of Research." Complementary Therapies in Medicine 18.3 (2010): 160-170. Lieberman, Morton A., and Benjamin A. Goldstein. "Self-Help On-Line: An Outcome Evaluation of Breast Cancer Bulletin Boards." Journal of Health Psychology 10.6 (2005): 855-862. Low, Carissa A., Annette L. Stanton, and Sharon Danoff-Burg. "Expressive Disclosure and Benefit Finding among Breast Cancer Patients: Mechanisms for Positive Health Effects." Health Psychology 25.2 (2006): 181-89. Nesbit, Susan G. "Using Creativity to Experience Flow on My Journey with Breast Cancer." Occupational Therapy in Mental Health 22.2 (2006): 61-79. Orgad, Shani. Storytelling Online: Talking Breast Cancer on the Internet. NY: Peter Lang, 2005. “Jagged Little Pill.” Paw Paw Salad. 16 Oct. 2012. 11 Mar. 2013. ‹http://www.paw-paw-salad.com/›. Pennebaker, J. "Putting Stress into Words: Health, Linguistic, and Therapeutic Implications." Behaviour Research and Therapy 31.6 (1993): 539-548. Puig, Ana, et al. "The Efficacy of Creative Arts Therapies to Enhance Emotional Expression, Spirituality, and Psychological Well-Being of Newly Diagnosed Stage I and Stage II Breast Cancer Patients: A Preliminary Study." The Arts in Psychotherapy 33.3 (2006): 218-228. Richards, Ruth. “When Illness Yields Creativity.” Eminent Creativity, Everyday Creativity and Health. Eds. Mark Runco and Ruth Richards. Greenwich: Ablex, 1997. 485-540. Stanton, Annette L, et al. "Randomized, Controlled Trial of Written Emotional Expression and Benefit Finding in Breast Cancer Patients." Journal of Clinical Oncology 20.20 (2002): 4160-4168. Wenger, Etienne, and William Snyder. "Communities of Practice: The Organizational Frontier.” Harvard Business Review 78.1 (2000): 139-146. Walker, Brenda. Reading by Moonlight: How Books Saved a Life. Australia: Penguin, 2010. Acknowledgements A special thanks to all the people, women and men, who have shared their lives with the research team via the Breast Cancer Click website. Breast Cancer Care WA, our ARC Linkage Project industry partner.

Introduction The decline of marriage in the West has been extensively researched over the last three decades (Carmichael and Whittaker; de Vaus; Coontz; Beck-Gernshein). Indeed, it was fears that the institution would be further eroded by the legalisation of same sex unions internationally that provided the impetus for the Australian government to amend the Marriage Act (1961). These amendments in 2004 sought to strengthen marriage by explicitly defining, for the first time, marriage as a legal partnership between one man and one woman. The subsequent heated debates over the discriminatory nature of this definition have been illuminating, particularly in the way they have highlighted the ongoing social significance of marriage, even at a time it is seen to be in decline. Demographic research about partnering practices (Carmichael and Whittaker; Simons; Parker; Penman) indicates that contemporary marriages are more temporary, fragile and uncertain than in previous generations. Modern marriages are now less about a permanent and “inescapable” union between a dominant man and a submissive female for the purposes of authorised sex, legal progeny and financial security, and more about a commitment between two social equals for the mutual exchange of affection and companionship (Croome). Less research is available, however, about how couples themselves reconcile the inherited constructions of romantic love as selfless and unending, with trends that clearly indicate that romantic love is not forever, ideal or exclusive. Civil marriage ceremonies provide one source of data about representations of love. Civil unions constituted almost 70 per cent of all marriages in Australia in 2010, according to the Australian Bureau of Statistics. The civil marriage ceremony has both a legal and symbolic role. It is a legal contract insofar as it prescribes a legal arrangement with certain rights and responsibilities between two consenting adults and outlines an expectation that marriage is voluntarily entered into for life. The ceremony is also a public ritual that requires couples to take what are usually private feelings for each other and turn them into a public performance as a way of legitimating their relationship. Consistent with the conventions of performance, couples generally customise the rest of the ceremony by telling the story of their courtship, and in so doing they often draw upon the language and imagery of the Western Romantic tradition to convey the personal meaning and social significance of their decision. This paper explores how couples construct the idea of love in their relationship, first by examining the western history of romantic love and then by looking at how this discourse is invoked by Australians in the course of developing civil marriage ceremonies in collaboration with the author. A History of Romantic Love There are many definitions of romantic love, but all share similar elements including an intense emotional and physical attraction, an idealisation of each other, and a desire for an enduring and unending commitment that can overcome all obstacles (Gottschall and Nordlund; Janowiak and Fischer). Romantic love has historically been associated with heightened passions and intense almost irrational or adolescent feelings. Charles Lindholm’s list of clichés that accompany the idea of romantic love include: “love is blind, love overwhelms, a life without love is not worth living, marriage should be for love alone and anything less is worthless and a sham” (5). These elements, which invoke love as sacred, unending and unique, perpetuate past cultural associations of the term. Romantic love was first documented in Ancient Rome where intense feelings were seen as highly suspect and a threat to the stability of the family, which was the primary economic, social and political unit. Roman historian Plutarch viewed romantic love based upon strong personal attraction as disruptive to the family, and he expressed a fear that romantic love would become the norm for Romans (Lantz 352). During the Middle Ages romantic love emerged as courtly love and, once again, the conventions that shaped its expression grew out of an effort to control excessive emotions and sublimate sexual desire, which were seen as threats to social stability. Courtly love, according to Marilyn Yalom, was seen as an “irresistible and inexhaustible passion; a fatal love that overcomes suffering and even death” (66). Feudal social structures had grounded marriage in property, while the Catholic Church had declared marriage a sacrament and a ceremony through which God’s grace could be obtained. In this context courtly love emerged as a way of dealing with the conflict between the individual and family choices over the martial partner. Courtly love is about a pure ideal of love in which the knight serves his unattainable lady, and, by carrying out feats in her honour, reaches spiritual perfection. The focus on the aesthetic ideal was a way to fulfil male and female emotional needs outside of marriage, while avoiding adultery. Romantic love re-appeared again in the mid-eighteenth century, but this time it was associated with marriage. Intellectuals and writers led the trend normalising romantic love in marriage as a reaction to the Enlightenment’s valorisation of reason, science and materialism over emotion. Romantics objected to the pragmatism and functionality induced by industrialisation, which they felt destroyed the idea of the mysterious and transcendental nature of love, which could operate as a form of secular salvation. Love could not be bought or sold, argued the Romantics, “it is mysterious, true and deep, spontaneous and compelling” (Lindholm 5). Romantic love also emerged as an expression of the personal autonomy and individualisation that accompanied the rise of industrial society. As Lanz suggests, romantic love was part of the critical reflexivity of the Enlightenment and a growing belief that individuals could find self actualisation through the expression and expansion of their “emotional and intellectual capacities in union with another” (354). Thus it was romantic love, which privileges the feelings and wishes of an individual in mate selection, that came to be seen as a bid for freedom by the offspring of the growing middle classes coerced into marriage for financial or property reasons. Throughout the 19th century romantic love was seen as a solution to the dehumanising forces of industrialisation and urbanisation. The growth of the competitive workplace—which required men to operate in a restrained and rational manner—saw an increase in the search for emotional support and intimacy within the domestic domain. It has been argued that “love was the central preoccupation of middle class men from the 1830s until the end of the 19th century” (Stearns and Knapp 771). However, the idealisation of the aesthetic and purity of love impacted marriage relations by casting the wife as pure and marital sex as a duty. As a result, husbands pursued sexual and romantic relationships outside marriage. It should be noted that even though love became cemented as the basis for marriage in the 19th century, romantic love was still viewed suspiciously by religious groups who saw strong affection between couples as an erosion of the fundamental role of the husband in disciplining his wife. During the late 19th and early 20th centuries romantic love was further impacted by urbanisation and migration, which undermined the emotional support provided by extended families. According to Stephanie Coontz, it was the growing independence and mobility of couples that saw romantic love in marriage consolidated as the place in which an individual’s emotional and social needs could be fully satisfied. Coontz says that the idea that women could only be fulfilled through marriage, and that men needed women to organise their social life, reached its heights in the 1950s (25-30). Changes occurred to the structure of marriage in the 1960s when control over fertility meant that sex was available outside of marriage. Education, equality and feminism also saw women reject marriage as their only option for fulfilment. Changes to Family Law Acts in western jurisdictions in the 1970s provided for no-fault divorce, and as divorce lost its stigma it became acceptable for women to leave failing marriages. These social shifts removed institutional controls on marriage and uncoupled the original sexual, emotional and financial benefits packaged into marriage. The resulting individualisation of personal lifestyle choices for men and women disrupted romantic conventions, and according to James Dowd romantic love came to be seen as an “investment” in the “future” that must be “approached carefully and rationally” (552). It therefore became increasingly difficult to sustain the idea of love as a powerful, mysterious and divine force beyond reason. Methodology In seeking to understand how contemporary partnering practices are reconstituting romantic love, I draw upon anecdotal data gathered over a nine-year period from my experiences as a marriage celebrant. In the course of personalising marriage ceremonies, I pose a series of questions designed to assist couples to explain the significance of their relationship. I generally ask brides and grooms why they love their fiancé, why they want to legalise their relationship, what they most treasure about their partner, and how their lives have been changed by their relationship. These questions help couples to reflexively interrogate their own relationship, and by talking about their commitment in concrete terms, they produce the images and descriptions that can be used to describe for guests the internal motivations and sentiments that have led to their decision to marry. I have had couples, when prompted to explain how they know the other person loves them say, in effect: “I know that he loves me because he brings me a cup of coffee every morning” or “I know that she loves me because she takes care of me so well.” These responses are grounded in a realism that helps to convey a sense of sincerity and authenticity about the relationship to the couple’s guests. This realism also helps to address the cynicism about the plausibility of enduring love. The brides and grooms in this sample of 300 couples were a socially, culturally and economically diverse group, and they provided a wide variety of responses ranging from deeply nuanced insights into the nature of their relationship, to admissions that their feelings were so private and deeply felt that words were insufficient to convey their significance. Reoccurring themes, however, emerged across the cases, and it is evident that even as marriage partnerships may be entered into for a variety of reasons, romantic love remains the mechanism by which couples talk of their feelings for each other. Australian Love and Marriage Australians' attitudes to romantic love and marriage have, understandably, been shaped by western understandings of romantic love. It is evident, however, that the demands of late modern capitalist society, with its increased literacy, economic independence and sexual equality between men and women, have produced marriage as a negotiable contract between social equals. For some, like Carol Pateman, this sense of equality within marriage may be illusory. Nonetheless, the drive for individual self-fulfilment by both the bride and groom produces a raft of challenges to traditional ideas of marriage as couples struggle to find a balance between independence and intimacy; between family and career; and between pursuing personal goals and the goals of their partners. This shift in the nature of marriage has implications for the “quest for undying romantic love,” which according to Anthony Giddens has been replaced by other forms of relationship, "each entered into for its own sake, for what can be derived by each person from a sustained association with another; and which is continued only in so far as it is thought by both parties to deliver enough satisfactions for each individual to stay within it” (qtd. in Lindholm 6). The impact of these social changes on the nature of romantic love in marriage is evident in how couples talk about their relationship in the course of preparing a ceremony. Many couples describe the person they are marrying as their best friend, and friendship is central to their commitment. This description supports research by V.K. Oppenheimer which indicates that many contemporary couples have a more “egalitarian collaborative approach to marriage” (qtd. in Carmichael and Whittaker 25). It is also standard for couples to note in ceremonies that they make each other happy and contented, with many commenting upon how their partners have helped to bring focus and perspective to their work-oriented lives. These comments tend to invoke marriage as a refuge from the isolation, competition, and dehumanising elements of workplaces. Since emotional support is central to the marriage contract, it is not surprising that care for each other is another reoccurring theme in ceremonies. Many brides and grooms not only explicitly say they are well taken care of by their partner, but also express admiration for their partner’s treatment of their families and friends. This behaviour appears to be seen as an indicator of the individual’s capacity for support and commitment to family values. Many couples admire partner’s kindness, generosity and level of personal self-sacrifice in maintaining the relationship. It is also not uncommon for brides and grooms to say they have been changed by their love: become kinder, more considerate and more tolerant. Honesty, communication skills and persistence are also attributes that are valued. Brides and grooms who have strong communication skills are also praised. This may refer to interpersonal competency and the willingness to acquire the skills necessary to negotiate the endless compromises in contemporary marriage now that individualisation has undermined established rules, rituals and roles. Persistence and the ability not to be discouraged by setbacks is also a reoccurring theme, and this connects with the idea that marriage is work. Many couples promise to grow together in their marriage and to both take responsibility for the health of their relationship. This promise implies awareness that marriage is not the fantasy of happily ever after produced in romantic popular culture, but rather an arrangement that requires hard work and conscious commitment, particularly in building a union amidst many competing options and distractions. Many couples talk about their relationship in terms of companionship and shared interests, values and goals. It is also not uncommon for couples to say that they admire their partner for supporting them to achieve their life goals or for exposing them to a wider array of lifestyle choices and options like travel or study. These examples of interdependence appear to make explicit that couples still see marriage as a vehicle for personal freedom and self-realisation. The death of love is also alluded to in marriage ceremonies. Couples talk of failed past relationships, but these are produced positively as a mechanism that enables the couple to know that they have now found an enduring relationship. It is also evident that for many couples the decision to marry is seen as the formalisation of a preexisting commitment rather than the gateway to a new life. This is consistent with figures that show that 72 per cent of Australian couples chose to cohabit before marriage (Simons 48), and that cohabitation has become the “normative pathway to marriage” (Penman 26). References to children also feature in marriage ceremonies, and for the couples I have worked with marriage is generally seen as the pre-requisite for children. Couples also often talk about “being ready” for marriage. This seems to refer to being financially prepared. Robyn Parker citing the research of K. Edin concludes that for many modern couples “rushing into marriage before being ‘set’ is irresponsible—marrying well (in the sense of being well prepared) is the way to avoid divorce” (qtd. in Parker 81). From this overview of reoccurring themes in the production of Australian ceremonies it is clear that romantic love continues to be associated with marriage. However, couples describe a more grounded and companionable attachment. These more practical and personalised sentiments serve to meet both the public expectation that romantic love is a precondition for marriage, while also avoiding the production of romantic love in the ceremony as an empty cliché. Grounded descriptions of love reveal that attraction does not have to be overwhelming and unconquerable. Indeed, couples who have lived together and are intimately acquainted with each other’s habits and disposition, appear to be most comfortable expressing their commitment to each other in more temperate, but no less deeply felt, terms. Conclusion This paper has considered how brides and grooms constitute romantic love within the shifting partnering practices of contemporary Australia. It is evident “in the midst of significant social and economic change and at a time when individual rights and freedom of choice are important cultural values” marriage remains socially significant (Simons 50). This significance is partially conveyed through the language of romantic love, which, while freighted with an array of cultural and historical associations, remains the lingua franca of marriage, perhaps because as Roberto Unger observes, romantic love is “the most influential mode of moral vision in our culture” (qtd. in Lindholm 5). It is thus possible to conclude, that while marriage may be declining and becoming more fragile and impermanent, the institution remains important to couples in contemporary Australia. Moreover, the language and imagery of romantic love, which publicly conveys this importance, remains the primary mode of expressing care, affection and hope for a partnership, even though the changed partnering practices of late modern capitalist society have exposed the utopian quality of romantic love and produced a cynicism about the viability of its longevity. It is evident in the marriage ceremonies prepared by the author that while the language of romantic love has come to signify a broader range of more practical associations consistent with the individualised nature of modern marriage and demystification of romantic love, it also remains the best way to express what Dowd and Pallotta describe as a fundamental human “yearning for communion with and acceptance by another human being” (571). References Beck, U., and E. Beck-Gernsheim, Individualisation: Institutionalised Individualism and Its Social and Political Consequences. London: Sage, 2002. Beigel, Hugo G. “Romantic Love.” American Sociological Review 16.3 (1951): 326–34. Carmichael, Gordon A, and Andrea Whittaker. “Forming Relationships in Australia: Qualitative Insights into a Process Important to Human Well Being.” Journal of Population Research 24.1 (2007): 23–49. Coontz, Stephanie. Marriage, A History: How Love Conquered Marriage. New York: Viking, 2005. Croome, Rodney. “Love and Commitment, To Equality.” The Drum Opinion, Australian Broadcasting Corporation (ABC) News. 8 June 2011. 14 Aug. 2012 < http://www.abc.net.au/unleashed/2749898.html >. de Vaus, D.L. Qu, and R. Weston. “Family Trends: Changing Patterns of Partnering.” Family Matters 64 (2003): 10–15. Dowd, James T, and Nicole R. Pallotta. “The End of Romance: The Demystification of Love in the Postmodern Age.” Sociological Perspectives 43.4 (2000): 549–80. Gottschall, Jonathan, and Marcus Nordlund. “Romantic Love: A Literary Universal?” Philosophy and Literature 30 (2006): 450–70. Jankowiak, William, and Ted Fischer, “A Cross-Cultural Perspective on Romantic Love,” Ethnology 31 (1992): 149–55. Lantz, Herman R. “Romantic Love in the Pre-Modern Period: A Sociological Commentary.” Journal of Social History 15.3 (1982): 349–70. Lindholm, Charles. “Romantic Love and Anthropology.” Etnofoor 19:1 Romantic Love (2006): 5–21. Parker, Robyn. “Perspectives on the Future of Marriage.” Australian Institute of Family Studies 72 Summer (2005): 78–82.Pateman, Carole. “Women and Consent.” Political Theory (1980): 149–68. Penman, Robyn. “Current Approaches to Marriage and Relationship Research in the United States and Australia.” Family Matters 70 Autumn (2005): 26–35. Simons, Michelle. “(Re)-forming Marriage in Australia?” Australian Institute of Family Matters 73 (2006): 46–51.Stearns, Peter N, and Mark Knapp. “Men and Romantic Love: Pinpointing a 20th-Century Change.” Journal of Social History 26.4 (1993): 769–95. Yalom, Marilyn. A History of the Wife. New York: Harper Collins, 2001.

Introduction Greater resilience is associated with the ability to self-organise, and with social learning as part of a process of adaptation and transformation (Goldstein 341). This article deals with responses to a crisis in a Norwegian community in the late 1880s, and with some of the many internal conflicts it caused. The crisis and the subsequent conflicts in this particular community, Volda, were caused by a number of processes, driven mostly by external forces and closely linked to the expansion of the capitalist mode of production in rural Norway. But the crisis also reflects a growing nationalism in Norway. In the late 1880s, all these causes seemed to come together in Volda, a small community consisting mostly of independent small farmers and of fishers. The article employs the concept of ‘resilience’ and the theory of resilience in order better to understand how individuals and the community reacted to crisis and conflict in Volda in late 1880, experiences which will cast light on the history of the late 1880s in Volda, and on individuals and communities elsewhere which have also experienced such crises. Theoretical Perspectives Some understandings of social resilience inspired by systems theory and ecology focus on a society’s ability to maintain existing structures. Reducing conflict to promote greater collaboration and resilience, however, may become a reactionary strategy, perpetuating inequalities (Arthur, Friend and Marschke). Instead, the understanding of resilience could be enriched by drawing on ecological perspectives that see conflict as an integral aspect of a diverse ecology in continuous development. In the same vein, Grove has argued that some approaches to anticipatory politics fashion subjects to withstand ‘shocks and responding to adversity through modern institutions such as human rights and the social contract, rather than mobilising against the sources of insecurity’. As an alternative, radical politics of resilience ought to explore political alternatives to the existing order of things. Methodology According to Hall and Lamont, understanding “how individuals, communities, and societies secured their well-being” in the face of the challenges imposed by neoliberalism is a “problem of understanding the bases for social resilience”. This article takes a similarly broad approach to understanding resilience, focusing on a small group of people within a relatively small community to understand how they attempted to secure their well-being in the face of the challenges posed by capitalism and growing nationalism. The main interest, however, is not resilience understood as something that exists or is being produced within this small group, but, rather, how this group produced social imaginaries of the past and the future in cooperation and conflict with other groups in the same community. The research proceeds to analyse the contributions mainly of six members of this small group. It draws on existing literature on the history of the community in the late 1800s and, in particular, biographies of Synnøve Riste (Øyehaug) and Rasmus Steinsvik (Gausemel). In addition, the research builds on original empirical research of approximately 500 articles written by the members of the group in the period from 1887 to 1895 and published in the newspapers Vestmannen, Fedraheimen and 17de Mai; and will try to re-tell a history of key events, referring to a selection of these articles. A Story about Being a Woman in Volda in the Late 1880s This history begins with a letter from Synnøve Riste, a young peasant woman and daughter of a local member of parliament, to Anders Hovden, a friend and theology student. In the letter, Synnøve Riste told her friend about something she just had experienced and had found disturbing (more details in Øyehaug). She first sets her story in the context of an evangelical awakening that was gaining momentum in the community. There was one preacher in particular who seemed to have become very popular among the young women. He had few problems when it comes to women, she wrote, ironically. Curious about the whole thing, Synnøve decided to attend a meeting to see for herself what was going on. The preacher noticed her among the group of young women. He turned his attention towards her and scolded her for her apparent lack of religious fervour. In the letter she explained the feeling of shame that came over her when the preacher singled her out for public criticism. But the feeling of shame soon gave way to anger, she wrote, before adding that the worst part of it was ‘not being able to speak back’; as a woman at a religious meeting she had to hold her tongue. Synnøve Riste was worried about the consequences of the religious awakening. She asked her friend to do something. Could he perhaps write a poem for the weekly newspaper the group had begun to publish only a few months earlier? Anders Hovden duly complied. The poem was published, anonymously, on Wednesday 17 March 1888. Previously, the poem says, women enjoyed the freedom to roam the mountains and valleys. Now, however, a dark mood had come over the young women. ‘Use your mind! Let the madness end! Throw off the blood sucker! And let the world see that you are a woman!’ The puritans appreciated neither the poem nor the newspaper. The newspaper was published by the same group of young men and women who had already organised a private language school for those who wanted to learn to read and write New Norwegian, a ‘new’ language based on the old dialects stemming from the time before Norway lost its independence and became a part of Denmark and then, after 1814, Sweden. At the language school the students read and discussed translations of Karl Marx and the anarchist Peter Kropotkin. The newspaper quickly grew radical. It reported on the riots following the hanging of the Haymarket Anarchists in Chicago in 1886. It advocated women’s suffrage, agitated against capitalism, argued that peasants and small farmers must learn solidarity from the industrial workers defended a young woman in Oslo who was convicted of killing her newborn baby and published articles from international socialist and anarchist newspapers and magazines. Social Causes for Individual Resilience and Collaborative Resilience Recent literature on developmental psychology link resilience to ‘the availability of close attachments or a supportive and disciplined environment’ (Hall and Lamont 13). Some psychologists have studied how individuals feel empowered or constrained by their environment. Synnøve Riste clearly felt constrained by developments in her social world, but was also resourceful enough to find ways to resist and engage in transformational social action on many levels. According to contemporary testimonies, Synnøve Riste must have been an extraordinary woman (Steinsvik "Synnøve Riste"). She was born Synnøve Aarflot, but later married Per Riste and took his family name. The Aarflot family was relatively well-off and locally influential, although the farms were quite small by European standards. Both her father and her uncle served as members of parliament for the (‘left’) Liberal Party. From a young age she took responsibility for her younger siblings and for the family farm, as her father spent much time in the capital. Her grandfather had been granted the privilege of printing books and newspapers, which meant that she grew up with easy access to current news and debates. She married a man of her own choosing; a man substantially older than herself, but with a reputation for liberal ideas on language, education and social issues. Psychological approaches to resilience consider the influence of cognitive ability, self-perception and emotional regulation, in addition to social networks and community support, as important sources of resilience (Lamont, Welburn and Fleming). Synnøve Riste’s friend and lover, Rasmus Steinsvik, later described her as ‘a mainspring’ of social activity. She did not only rely on family, social networks and community support to resist stigmatisation from the puritans, but she was herself a driving force behind social activities that produced new knowledge and generated communities of support for others. Lamont, Welburn and Fleming underline the importance for social resilience of cultural repertoires and the availability of ‘alternative ways of understanding social reality’ (Lamont, Welburn and Fleming). Many of the social activities Synnøve Riste instigated served as arenas for debate and collaborative activity to develop alternative understandings of the social reality of the community. In 1887, Synnøve Riste had relied on support from her extended family to found the newspaper Vestmannen, but as the group around the language school and newspaper gradually produced more radical alternative understandings of the social reality they came increasingly into conflict with less radical members of the Liberal Party. Her uncle owned the printing press where Vestmannen was printed. He was also a member of parliament seeking re-election. And he was certainly not amused when Rasmus Steinsvik, editor of Vestmannen, published an article reprimanding him for his lacklustre performance in general and his unprincipled voting in support of a budget allocating the Swedish king a substantial amount of money. Steinsvik advised the readers to vote instead for Per Riste, Synnøve Riste’s liberal husband and director of the language school. The uncle stopped printing the newspaper. Social Resilience in Volda The growing social conflicts in Volda might be taken to indicate a lack of resilience. This, however, would be a mistake. Social connectedness is an important source of social resilience (Barnes and Hall 226). Strong ties to family and friends matter, as does membership in associations. Dense networks of social connectedness are related to well-being and social resilience. Inversely, high levels of inequality seem to be linked to low levels of resilience. Participation in democratic processes has also been found to be an important source of resilience (Barnes and Hall 229). Volda was a small community with relatively low levels of inequality and local cultural traditions underlining the importance of cooperation and the obligations of everyone to participate in various forms of communal work. Similarly, even though a couple of families dominated local politics, there was no significant socioeconomic division between the average and the more prosperous farmers. Traditionally, women on the small, independent farms participated actively in most aspects of social life. Volda would thus score high on most indicators predicting social resilience. Reading the local newspapers confirms this impression of high levels of social resilience. In fact, this small community of only a few hundred families produced two competing newspapers at the time. Vestmannen dedicated ample space to issues related to education and schools, including adult education, reflecting the fact that Volda was emerging as a local educational centre; local youths attending schools outside the community regularly wrote articles in the newspaper to share the new knowledge they had attained with other members of the community. The topics were in large part related to farming, earth sciences, meteorology and fisheries. Vestmannen also reported on other local associations and activities. The local newspapers reported on numerous political meetings and public debates. The Liberal Party was traditionally the strongest political party in Volda and pushed for greater independence from Sweden, but was divided between moderates and radicals. The radicals joined workers and socialists in demanding universal suffrage, including, as we have seen, women’s right to vote. The left libertarians in Volda organised a ‘radical left’ faction of the Liberal Party and in the run-up to the elections in 1888 numerous rallies were arranged. In some parts of the municipality the youth set up independent and often quite radical youth organisations, while others established a ‘book discussion’. The language issue developed into a particularly powerful source for social resilience. All members of the community shared the experience of having to write and speak a foreign language when communicating with authorities or during higher education. It was a shared experience of discrimination that contributed to producing a common identity. Hing has shown that those who value their in-group ‘can draw on this positive identity to provide a sense of self-worth that offers resilience’. The struggle for recognition stimulated locals to arrange independent activities, and it was in fact through the burgeoning movement for a New Norwegian language that the local radicals in Volda first encountered radical literature that helped them reframe the problems and issues of their social world. In his biography of Ivar Mortensson Egnund, editor of the newspaper Fedraheimen and a lifelong collaborator of Rasmus Steinsvik, Klaus Langen has argued that Mortensson Egnund saw the ideal type of community imagined by the anarchist Leo Tolstoy in the small Norwegian communities of independent small farmers, a potential model for cooperation, participation and freedom. It was not an uncritical perspective, however. The left libertarians were constantly involved in clashes with what they saw as repressive forces within the communities. It is probably more correct to say that they believed that the potential existed, within these communities, for freedom to flourish. Most importantly, however, reading Fedraheimen, and particularly the journalist, editor and novelist Arne Garborg, infused this group of local radicals with anti-capitalist perspectives to be used to make sense of the processes of change that affected the community. One of Garborg’s biographers, claims that no Norwegian has ever been more fundamentally anti-capitalist than Garborg (Thesen). This anti-capitalism helped the radicals in Volda to understand the local conflicts and the evangelical awakening as symptoms of a deeper and more fundamental development driven by capitalism. A series of article in Vestmannen called for solidarity and unity between small farmers and the growing urban class of industrial workers. Science and Modernity The left libertarians put their hope in science and modernity to improve the lives of people. They believed that education was the key to move forward and get rid of the old and bad ways of doing things. The newspaper was reporting the latest advances in natural sciences and life sciences. It reported enthusiastically about the marvels of electricity, and speculated about a future in which Norway could exploit the waterfalls to generate it on a large scale. Vestmannen printed articles in defence of Darwinism (Egnund), new insights from astronomy (Steinsvik "Kva Den Nye Astronomien"), health sciences, agronomy, new methods of fishing and farming – and much more. This was a time when such matters mattered. Reports on new advances in meteorology in the newspaper appeared next to harrowing reports about the devastating effects of a storm that surprised local fishermen at sea where many men regularly paid with their lives. Hunger was still a constant threat in the harsh winter months, so new knowledge that could improve the harvest was most welcome. Leprosy and other diseases continued to be serious problems in this region of Norway. Health could not be taken lightly, and the left libertarians believed that science and knowledge was the only way forward. ‘Knowledge is a sweet fruit,’ Vestmannen wrote. Reporting on Darwinism and astronomy again pitted Vestmannen against the puritans. On several occasions the newspaper reported on confrontations between those who promoted science and those who defended a fundamentalist view of the Bible. In November 1888 the signature ‘-t’ published an article on a meeting that had taken place a few days earlier in a small village not far from Volda (Unknown). The article described how local teachers and other participants were scolded for holding liberal views on science and religion. Anyone who expressed the view that the Bible should not be interpreted literally risked being stigmatised and ostracised. It is tempting to label the group of left libertarians ‘positivists’ or ‘modernists’, but that would be unfair. Arne Garborg, the group’s most important source of inspiration, was indeed inspired by Émile Zola and the French naturalists. Garborg had argued that nothing less than the uncompromising search for truth was acceptable. Nevertheless, he did not believe in objectivity; Garborg and his followers agreed that it was not possible or even desirable to be anything else than subjective. Adaptation or Transformation? PM Giærder, a friend of Rasmus Steinsvik’s, built a new printing press with the help of local blacksmiths, so the newspaper could keep afloat for a few more months. Finally, however, in 1888, the editor and the printer took the printing press with them and moved to Tynset, another small community to the east. There they joined forces with another dwindling left libertarian publication, Fedraheimen. Generations later, more details emerged about the hurried exit from Volda. Synnøve Riste had become pregnant, but not by her husband Per. She was pregnant by Rasmus Steinsvik, the editor of Vestmannen and co-founder of the language school. And then, after giving birth to a baby daughter she fell ill and died. The former friends Per and Rasmus were now enemies and the group of left libertarians in Volda fell apart. It would be too easy to conclude that the left libertarians failed to transform the community and a closer look would reveal a more nuanced picture. Key members of the radical group went on to play important roles on the local and national political scene. Locally, the remaining members of the group formed new alliances with former opponents to continue the language struggle. The local church gradually began to sympathise with those who agitated for a new language based on the Norwegian dialects. The radical faction of the Liberal Party grew in importance as the conflict with Sweden over the hated union intensified. The anarchists Garborg and Steinsvik became successful editors of a radical national newspaper, 17de Mai, while two other members of the small group of radicals went on to become mayors of Volda. One was later elected member of parliament for the Liberal Party. Many of the more radical anarchist and communist ideas failed to make an impact on society. However, on issues such as women’s rights, voting and science, the left libertarians left a lasting impression on the community. It is fair to say that they contributed to transforming their society in many and lasting ways. Conclusion This study of crisis and conflict in Volda indicate that conflict can play an important role in social learning and collective creativity in resilient communities. There is a tendency, in parts of resilience literature, to view resilient communities as harmonious wholes without rifts or clashes of interests (see for instance Goldstein; Arthur, Friend and Marschke). Instead, conflicts should rather be understood as a natural aspect of any society adapting and transforming itself to respond to crisis. Future research on social resilience could benefit from an ecological understanding of nature that accepts polarisation and conflict as a natural part of ecology and which helps us to reach deeper understandings of the social world, also fostering learning, creativity and the production of alternative political solutions. This research has indicated the importance of social imaginaries of the past. Collective memories of ‘what everybody knows that everybody else knows’ about ‘what has worked in the past’ form the basis for producing ideas about how to create collective action (Swidler 338, 39). Historical institutions are pivotal in producing schemas which are default options for collective action. In Volda, the left libertarians imagined a potential for freedom in the past of the community; this formed the basis for producing an alternative social imaginary of the future of the community. The social imaginary was not, however, based only on local experience and collective memory of the past. Theories played an important role in the process of trying to understand the past and the present in order to imagine future alternatives. The conflicts themselves stimulated the radicals to search more widely and probe more deeply for alternative explanations to the problems they experienced. This search led them to new insights which were sometimes adopted by the local community and, in some cases, helped to transform social life in the long-run. References Arthur, Robert, Richard Friend, and Melissa Marschke. "Fostering Collaborative Resilience through Adaptive Comanagement: Reconciling Theory and Practice in the Management of Fisheries in the Mekong Region." Collaborative Resilience: Moving through Crisis to Opportunity. Ed. Bruce Evan Goldstein. Cambridge, Mass., and London: MIT Press, 2012. 255-282. Barnes, Lucy, and Peter A. Hall. "Neoliberalism and Social Resilience in the Developed Democracies." Social Resilience in the Neoliberal Era. Eds. Peter A. Hall and Michèle Lamont. New York: Cambridge University Press, 2013. 209-238. Egnund, Ivar Mortensson. "Motsetningar." Vestmannen 13.6 (1889): 3. Gausemel, Steffen. Rasmus Steinsvik. Oslo: Noregs boklag, 1937. Goldstein, Bruce Evan. "Collaborating for Transformative Resilience." Collaborative Resilience: Moving through Crisis to Opportunity. Ed. Bruce Evan Goldstein. Cambridge, Mass., and London: MIT Press, 2012. 339-358. Hall, Peter A., and Michèle Lamont. "Introduction." Social Resilience in the Neoliberal Era. Eds. Peter A. Hall and Michèle Lamont. New York: Cambridge University Press, 2013. Lamont, Michèle, Jessica S Welburn, and Crystal M Fleming. "Responses to Discrimination and Social Resilience under Neoliberalism: The United States Compared." Social Resilience in the Neoliberal Era. Eds. Peter A. Hall and Michèle Lamont. New York: Cambridge University Press, 2013. 129-57. Steinsvik, Rasmus. "Kva Den Nye Astronomien Kan Lære Oss." Vestmannen 8.2 (1889): 1. ———. "Synnøve Riste." Obituary. Vestmannen 9.11 (1889): 1. Swidler, Ann. "Cultural Sources of Institutional Resilience: Lessons from Chieftaincy in Rural Malawi." Social Resilience in the Neoliberal Era. Eds. Peter A. Hall and Michèle Lamont. New York: Cambridge University Press, 2013.

Photo by Hédi Benyounes on Unsplash ABSTRACT The current incarceration facilities for the growing number of women are depriving expecting mothers of adequate care crucial for the child’s mental and physical development. Programs need to be established to counteract this. INTRODUCTION Currently, Diana Sanchez was eight months pregnant when she was arrested for identity theft and put in a prison cell in Denver. At five a.m., two weeks after being incarcerated, she announced to a deputy outside her cell that she was going into labor. Footage from a camera in her cell shows her pacing anxiously or writhing in her bed for the five hours preceding the arrival of her son. She banged on the door and begged for help. All she received was an absorbent pad. She gave birth alone in her prison cell on July 31, 2015, around 10:45 am. At 11:00 am, a prison nurse walked in to cut the umbilical cord and take Sanchez’s newborn baby without offering postnatal care. Sanchez was later sent to a hospital, and her baby was separated from her until she was put on probation. In 2018, on behalf of her three-year-old son, Sanchez sued Denver Health and Denver Sheriff Department and won a $480,000 settlement.[1] Though many more men are incarcerated than women, the rate of growth of female incarceration has exceeded that of male incarceration for decades. One study estimated that 231,000 women are currently incarcerated in the US,[2] 80 percent of whom are mothers, and 150,000 pregnant.[3] Another recent study of 1,396 incarcerated pregnant women found that 92 percent had live births, 6.5 percent had stillbirths or miscarriages, and 4 percent terminated the pregnancy. The authors found that there is no system of reporting pregnancy outcomes in US prisons. There is a noteworthy ethical lapse in mental, emotional, and medical care that threatens the well-being of pregnant women in prison. According to Carolyn Sufrin, “Pregnant incarcerated people are one of the most marginalized and forgotten groups in our country… and women who don't get counted don't count.” [4] Poor documentation, visibility, and transparency contribute to the systemic abuse of incarcerated women. Studies document women giving birth alone in cells and shackles in solitary confinement. Their complaints regarding contractions, bleeding, and other pains of labor are often ignored.[5] l. Prenatal Care in American Prisons Diana Sanchez was not offered any prenatal care after she was incarcerated. And neither she nor her son received appropriate postnatal care.[6] Sanchez was on medication for opioid withdrawal while pregnant, which could have been detrimental to her baby’s health.[7] There is an unacceptable absence of pre- and postnatal care in most US prisons. A lack of regulation makes the availability of perinatal care unpredictable and unreliable. Several studies confirmed that there is not a standard for prenatal care for women incarcerated during pregnancy. [8] Knowledge of the appropriate mental and physical care pregnant women require, addiction support, and support for maternal-infant bonding all exists outside the prison system and ought to be used as a benchmark. At the very least, pregnant women, birthing women, and new mothers should not be placed in solitary confinement or shackled.[9] In the prenatal arena, depriving an individual of adequate healthcare is not appropriate and could be cruel and unusual. Only 18 percent of funding in prisons goes to health care for the prisoners. That is roughly $5.7 thousand per prisoner, according to an NIH study done in 2015.[10] There should be an adequate amount of funding for the health needs of incarcerated pregnant women. By depriving pregnant women of healthcare, the prisons are depriving the fetus of adequate care. ll. Respect for Autonomy During Incarceration Women maintain healthcare autonomy even when incarcerated. The purpose of a prison sentence is retribution for crimes and rehabilitation to prevent reoffending.[11] The separation of a mother and newborn causes significant developmental and psychological harm to the child and the parent. Parent-child separation does not serve the purpose of retribution or rehabilitation and is authorized only due to prisons’ limited space and resources that make it difficult to accommodate children, as well as a state interest in children’s best interests or the custody rights of the other parent. When it is possible to keep a family together, prisons should make every effort to do so for the health of the mother-child relationship. Incarcerated people may become a burden to family or society due to prison medical neglect. For example, diabetes and hypertension, which can occur during pregnancy, can worsen without treatment. The inability to access the care they would otherwise want and need endangers women and poses a burden to the healthcare system after incarceration, Depersonalizing individuals convicted of crimes must be placed in the context of historical eugenics practices. State-sanctioned sterilization and efforts to prevent women from reproducing were widespread during the early 20th century.[12] Cases of coerced and nonconsensual sterilization of incarcerated women and men evidence the history of eugenics.[13]Abortions are offered to some incarcerated women.[14] However, many incarcerated women are denied the right to see healthcare providers to thoroughly discuss abortion or other options.[15] Although the abortions are consensual, the quality of consent is questionable. lll. Prison Nursery Programs, “I need something to live for…” Indiana Women’s Prison (IWP), a max security female prison, has a program called Wee Ones that enables women convicted of nonviolent crimes to spend 30 months bonding with their newborn child. It is one of eight programs in the country that allows pregnant mothers to spend the last few months of their sentence with their children. It is a voluntary program that allows pregnant offenders a private room in a housing unit. It offers parent education, resources that are accessible after release, and career education. The program application process and the rules to which women must adhere to remain in the program are stringent. The programs generally have a zero-tolerance policy. Even simply sleeping in the same bed as the child or arguing with other mothers can result in termination from the program. Kara, a pregnant woman incarcerated for drug possession, had a history of abuse in her family and tended to act out in anger against her peers in the program. She was learning how to have healthy reactions to anger when handling her child, but her temper ultimately led to her removal from the program. Her son was placed in foster care, and Kara returned to the regular cells. In an interview before her transfer, she told the camera that Charlie gave her a purpose. With tears in her eyes, she said, “Charlie was my way of life here [...] I need something to live for [,] and I screwed up.”[16] Pregnancy in prison can be a way to improve quality of life for some women. Studies demonstrate that nursery programs improve mental health of the incarcerated women.[17] The secure attachment of the infant to its primary caregiver promotes healthy development in the child and a bonded relationship with the mother.[18] The close bond between mother and child in prisons has been shown to decrease recidivism and to reduce the burden on the foster care system.[19] Women who do not qualify for these programs, or are incarcerated in prisons without them, are separated from their newborn babies and their other children. The disconnect can lead to the child rejecting the incarcerated mother once she is released.[20] Programs like Wee Ones honor women’s autonomy while they are incarcerated. During interviews, the women expressed that although raising a child in that environment is difficult, it was better than not being with their children. While rocking a baby in her lap, one inmate expressed her frustrations with Wee Ones but then paused to express gratitude and said, “After all, it’s prison. And prison ain’t supposed to be nice.”[21] The ethical issue of autonomy reflects a more difficult dilemma in the prison landscape. lV. Counter Arguments: Do the Nursery Programs Work for the Children and the Women Typically, newborns are taken from their incarcerated mothers within two to three days of birth and sent to live with a relative or placed in foster care. Many women are never reunited with their babies. There is much debate over whether the programs are beneficial to the children. One ethical issue is whether children, as innocents, are being punished either by being in the prison system or by being separated from their mothers. Skeptics, like James Dwyer, have argued against keeping innocent babies in the custody of incarcerated mothers asserting that there is little evidence demonstrating that the programs rehabilitate the women.[22] Dwyer commented on the “reckless” hopefulness the programs provide: "It might, in fact, be the babies distract them from rehabilitation they should be doing instead. […] They're so focused on childcare and have this euphoria — they think they'll be just fine when they get out of prison and they're not. We just don't know."[23] One study showed that 58 percent of incarcerated women are arrested again after release, 38 percent are reconvicted, and 30 percent return to prison within three years.[24] Dwyer uses this data to argue that the programs are not worthwhile. However, the data is not limited to the special population that had the prison nursery experience. The data applies to all incarcerated women limiting its applicability. More importantly, there is compelling evidence to support prison nursery programs.[25] The programs do decrease recidivism[26] and prison misconduct,[27] and they allow women to create stronger bonds with their children.[28] Bev Little argues that allowing mothers to bond with their babies only delays the inevitable separation and will cause trauma and have other ill effects on the baby. [29] But others feel that stronger maternal-fetal attachment is best for both parties. There is evidence that the bond, once formed, is long-lasting. Later in life, there is less drug addiction among children who stayed in the nursery rather than being separated from their mothers.[30] Another counterargument is that the policies in prison nurseries are not as useful for motherhood outside of the facility; thus, an issue with recidivism occurs because the women are less prepared for motherhood upon release from prison. Prison nursery programs establish methods and procedures for successful motherhood that are unique to operation within correctional environments. Yet, fortunately, parenting classes offered by prisons and jails emphasize sacrifice, self-restraint, and dedicated attention to the baby. These classes aptly apply to motherhood outside of prison.[31] One incarcerated mother experiencing addiction, Kima, was described as ambivalent toward her pregnancy. “It’s something about knowing but not knowing that makes me not accountable or makes me think I’m not accountable,” Kima shared.[32] After the nurse confirmed her pregnancy, she acknowledged fear and knew she would be held accountable to the baby. The occurrence of pregnancy ambivalence is common.[33] A study of a population of prisoners from Rhode Island found that 41 percent of the women expressed ambivalent attitudes about pregnancy. 70 of the women from a population in San Francisco expressed ambivalent or negative attitudes towards pregnancy.[34] But the ambivalence of some women toward pregnancy is not a reason to prevent women who feel differently from reaping the full benefits of programs that support them during pregnancy. Another counterargument is that prison is becoming a comfort that women might seek if they are homeless or housing insecure. For example, Evelyn was released from a San Francisco jail after being arrested for using cocaine. She was 26 weeks pregnant and had a four-year-old son in the custody of her aunt. Following her release, she was homeless and using drugs in the streets. She felt that her only hope of keeping her baby safe was to go back to jail. Like Kima, she had been in and out of jail from a young age. She grew accustomed to and dependent on the care provided there. While incarceration can provide a home and a nursery, there is no ethical reason to argue for making prison less comfortable by separating babies and children from incarcerated women. Instead, these facts suggest we are not doing enough for women outside prisons either. CONCLUSION Many experts stress the dearth of research and information on these women and their babies. There is no empirical data to show how big the problem is, but there is evidence that programs providing nursery care for the children of incarcerated women have many benefits. Because the research is not largescale enough, many pregnant women in the prison system are ignored. Many women give birth in unacceptable conditions, and their children are taken from them the moment the umbilical cord is cut. While the US incarcerates too many women, a movement to expand prison nurseries could help new mothers bond with their children. Strong educational programs could aid in lowering the rates of recidivism by providing therapeutic resources for mothers.[35] There is a growing problem of mass incarceration in the US as many women are placed in correctional facilities. Most of these women are convicted of possession or use of illegal substances.[36] Many women come from disadvantaged backgrounds, poverty, and have experienced addiction. Depriving an expectant mother of adequate care is cruel and irresponsible both to the mother and her innocent child. The criminal justice system is harming children both mentally and physically. Reform of the system is needed to provide the basic care those children need. Programs like IWP’s Wee Ones are necessary for physical, psychological, and social development. A program that offers a place for mothers to raise their babies in the community of other mothers would incentivize and facilitate healthy parental habits. Further programs for mothers who are released from prison would give them valuable resources to keep them from returning and encourage healthy relationships between the mother and the baby. - [1] Li, D. K. Video allegedly shows woman giving birth in Denver jail cell alone, with no assistance. Denver: NBC News, 2019. [2] Kajstura, Aleks. “Women's Mass Incarceration: The Whole Pie 2019.” Prison Policy Initiative, 29 Oct. 2019, https://www.prisonpolicy.org/reports/pie2019women.html. (“Including those in prisons, jails, and other correctional facilities.”) [3] Swavola, E, K Riley and R Subramanian. "Overlooked: Women and Jails in an Era of Reform." Vera Institute of Justice August 2016. [4] Sufrin, C. Pregnant Behind Bars: What We Do and Don't Know About Pregnancy and Incarceration Allison Chang. 21 March 2019. Transcript. [5] Sufrin, C., 2019. (Suffrin expressed that she had seen such practices firsthand working as an OB/GYN for incarcerated women.) [6] Padilla, M. “Woman Gave Birth in Denver Jail Cell Alone, Lawsuit Says,” New York Times, Sep. 1, 2019. [7] Li, D. “Video allegedly shows woman giving birth in Denver jail cell alone, with no assistance,” NBC U.S. News, Apr. 29. 2019. [8] Knittel, A. and C. Sufrin. "Maternal Health Equity and Justice for Pregnant Women Who Experience Incarceration." JAMA Network Open 3.8 (2020). A study in Ontario, Canada, coincided with a study done in Australia. [9] Sufrin, C., et al. "Pregnancy Outcomes in US Prisons, 2016–2017." p. 803-804. [10] Sridhar, S., R. Cornish and S. Fazel. "The Costs of Healthcare in Prison and Custody: Systematic Review of Current Estimates and Proposed Guidelines for Future Reporting." Frontiers in Psychiatry 9.716 (2018). [11] Kifer, M., Hemmens, C., Stohr, M. K. “The Goals of Corrections: Perspectives from the Line” Criminal Justice Review. 1 May 2003 [12] Perry, D. M. "Our Long, Troubling History of Sterilizing the Incarcerated." The Marshall Project: Sterilization of Women in Prison 26 July 2017. [13] Rachel Roth & Sara L. Ainsworth, If They Hand You a Paper, You Sign It: A Call to End the Sterilization of Women in Prison, 26 Hastings WOMEN's L.J. 7 (2015); See Skinner v. Oklahoma ex rel. Williamson, 316 U.S. 535 (1942) (procreation considered a fundamental right; fact pattern of male sterilization in prison based on type of crime.) [14] Sufrin, C., M. D. Creinin, J. C. Chang. “Incarcerated Women and Abortion Provision: A Survey of Correctional Health Providers.” Perspectives on Sexual and Reproductive Health. p. 6-11. 23 March 2009. [15] Kasdan, D. “Abortion Access for Incarcerated Women: Are Correctional Health Practices in Conflict with Constitutional Standards?” Guttmacher Institute. 26 March 2009. [16] Born Behind Bars. Season 1, Episode 5, “They Can Take Your Baby Away,” produced by Luke Ellis, Francis Gasparini, & Jen Wise, aired on 15 Nov. 2017 A&E Networks [17] Bick, J., & Dozier, M. (2008). Helping Foster Parents Change: The Role of Parental State of Mind. In H. Steele & M. Steele (Eds.), Clinical applications of the Adult Attachment Interview (pp. 452–470). New York: Guilford Press. [18]Sroufe, L. A., B. Egeland, E. A. Carlson, W. A. Collins. (2005). The Development of the Person: The Minnesota Study of Risk and Adaptation from Birth to Adulthood. New York: Guilford Press. [19] Goshin, L. S., & Byrne, M. W. “Converging Streams of Opportunity for Prison Nursery Programs in the United States.” Journal of Offender Rehabilitation. 15 Apr 2009. [20] Babies Behind Bars. Dirs. W. Serrill and S. O'Brien. 2015. Another IWP pregnant woman is Taylor. At the time of the show, she was pregnant and expecting twins. In interviews throughout the episode, she expressed how her pregnancies in prison had put her in a better mood and felt beneficial to her. She had tried to sign up for the nursery program for her previous pregnancy, but her sentence was too long to get it. Her child was sent to live with a caregiver, and when Taylor was on probation, Taylor’s daughter didn’t want to be around Taylor. Taylor was so distraught that she messed up and went back, this time, pregnant with twins. After she was reincarcerated, she was able to be accepted into Wee Ones. She expressed to the camera man that the program might help her feel more like a mother so that when she gets out, she will have someone to care for. Taylor, Kara, and many other women depend on their children or their pregnancy for a purpose while behind bars. They relied on their babies to be a boon for them. [21] Babies Behind Bars. Dirs. W. Serrill and S. O'Brien. 2015. [22] Corley, C. "Programs Help Incarcerated Moms Bond with Their Babies in Prison." Criminal Justice Collaborative (2018). [23] Corley, C. "Programs Help Incarcerated Moms Bond with Their Babies in Prison." Criminal Justice Collaborative (2018). [24] Owen, B. & Crow, J. “Recidivism among Female Prisoners: Secondary Analysis of the 1994 BJS Recidivism Data Set” Department of Criminology California State University (2006) p. 28 [25] Prison Nursery Programs: Literature Review and Fact Sheet for CT. Diamond Research Consulting, 2012, www.cga.ct.gov/2013/JUDdata/tmy/2013HB-06642-R000401-Sarah Diamond - Director, Diamond Research Consulting-TMY.PDF. [26] New York Department of Correction Services (NYDOCS). (1993). Profile of Participants: The Bedford and Taconic Nursery Program in 1992. Albany, NY. Department of Correction Services.Rowland, M., & Watts, A. (2007). Washington State’s effort to the generational impact on crime. Corrections Today. Retrieved September 12, 2007, from http://www. aca.org/publications/pdf/Rowland_Watts_Aug07.pdf. [27] Carlson, J. R. (2001). Prison nursery 2000: A five-year review of the prison nursery at the Nebraska Correctional Center for Women. Journal of Offender Rehabilitation, 33, 75–97. [28] Carlson, J.R. [29] Little, B. "What Happens When a Woman Gives Birth Behind Bars?" A+E Networks, 29 October 2019. <https://www.aetv.com/real-crime/what-happens-when-a-woman-gives-birth-in-jail-or-prison>. [30] Margolies, J. K., & Kraft-Stolar, T. When “Free” Means Losing Your Mother: The Collision of Child Welfare and the Incarceration of Women in New York State 1, 9 (Correctional Association of N.Y. Women in Prison Project 2006) [31] Sufrin, C. Jailcare: Finding the Safety Net for Women Behind Bars. Berkeley: University of California Press, 2017. [32] Sufrin, C. Jailcare: p. 155. [33] Peart, M. S. & Knittel, A. K. “Contraception need and available services among incarcerated women in the United States: a systematic review.” Contraception and Reproductive Medicine. 17 March 2020 [34] LaRochelle, F., C. Castro, J. Goldenson, J. P. Tulsky, D.L. Cohan, P. D. Blumenthal, et al. “Contraceptive use and barriers to access among newly arrested women.” J Correct Health Care. (2012) p. 111–119. [35] Goshin, L., & Byrne, M. (2009). “Converging streams of opportunity for prison nursery programs in the United States.” Journal of Offender Rehabilitation. 2009. p.271–295. [36] Elizabeth Swavola, Kristine Riley, Ram Subramanian. Overlooked: Women and Jails in an Era of Reform. New York: Vera Institute of Justice, 2016.

Photo by 14825144 © Alita Xander | Dreamstime.com ABSTRACT The US government's approach to the War on Drugs has created laws to deter people from using illicit drugs through negative punishment. These laws have not controlled illicit drug use, nor has it stopped the opioid pandemic from growing. Instead, these laws have created a negative bias surrounding addiction and have negatively affected particularly vulnerable patient populations, including pregnant women with substance use disorder and newborns with neonatal abstinence syndrome. This article highlights some misconceptions and underscores the challenges they face as they navigate the justice and healthcare systems while also providing possible solutions to address their underlying addiction. INTRODUCTION Pregnant women with substance use disorder require treatment that is arguably for the benefit of both the mother and the fetus. Some suggest that addiction is a choice; therefore, those who misuse substances should not receive treatment. Proponents of this argument emphasize social and environmental factors that lead to addiction but fail to appreciate how chronic substance use alters the brain’s chemistry and changes how it responds to stress, reward, self-control, and pain. The medical community has long recognized that substance use disorder is not simply a character flaw or social deviance, but a complex condition that requires adequate medical attention. Unfortunately, the lasting consequences of the War on Drugs have created a stigma around addiction medicine, leading to significant treatment barriers. There is still a pervasive societal bias toward punitive rather than rehabilitative approaches to addiction. For example, many women with substance use disorder lose custody of their baby or face criminal penalties, including fines and jail time.[1] These punitive measures may cause patients to lose trust in their physicians, ultimately leading to high-risk pregnancies without prenatal care, untreated substance misuse, and potential lifelong disabilities for their newborns.[2] As a medical student, I have observed the importance of a rehabilitative approach to addiction medicine. Incentivizing pregnant women with substance use disorder to safely address their chronic health issues is essential for minimizing negative short-term and long-term outcomes for women and their newborns. This approach requires an open mind and supportive perspective, recognizing that substance use disorder is truly a medical condition that requires just as much attention as any other medical diagnosis.[3] BACKGROUND The War on Drugs was a government-led initiative launched in 1970 by President Richard M. Nixon with the aim of curtailing illegal drug use, distribution, and trade by imposing harsher prison sentences and punishments.[4] However, it is worth noting that one can trace the roots of this initiative back further. In 1914, Congress enacted the Harrison Narcotics Tax Act to target the recreational use of drugs such as morphine and opium.[5] Despite being in effect for over four decades, the War on Drugs failed to achieve its intended goals. In 2011, the Global Commission on Drug Policy released a report that concluded that the initiative had been futile, as “arresting and incarcerating tens of millions of these people in recent decades has filled prisons and destroyed lives and families without reducing the availability of illicit drugs or the power of criminal organizations.”[6] One study published in the International Journal of Drug Policy in the same year found that funding drug law enforcement paradoxically contributed to increasing gun violence and homicide rates.[7] The Commission recommended that drug policies focus on reducing harm caused by drug use rather than solely on reducing drug markets. Recognizing that many drug policies were of political opinion, it called for drug policies that were grounded in scientific evidence, health, security, and human rights.[8] Unfortunately, policy makers did not heed these recommendations. In 2014, Tennessee’s legislature passed a “Fetal Assault Law,” which made it possible to prosecute pregnant women for drug use during pregnancy. If found guilty, pregnant women could face up to 15 years in prison and lose custody of their child. Instead of deterring drug use, the law discouraged pregnant women with substance use disorder from seeking prenatal care. This law required medical professionals to report drug use to authorities, thereby compromising the confidentiality of the patient-physician relationship. Some avoided arrest by delivering their babies in other states or at home, while others opted for abortions or attempted to go through an unsafe withdrawal prior to receiving medical care, sacrificing the mother's and fetus's wellbeing. The law had a sunset provision and expired in 2016. During the two years this law was in effect, officials arrested 124 women.[9] The fear that this law instilled in pregnant women with substance use disorder can still be seen across the US today. Many pregnant women with substance use disorders stated that they feared testing positive for drugs. Due to mandatory reporting, they were not confident that physicians would protect them from the law.[10] And if a woman tried to stop using drugs before seeking care to avoid detection, she often ended up delaying or avoiding care.[11] The American College of Obstetricians and Gynecologists (ACOG) recognizes the fear those with substance use disorders face when seeking appropriate medical care and emphasizes that “obstetric–gynecologic care should not expose a woman to criminal or civil penalties, such as incarceration, involuntary commitment, loss of custody of her children, or loss of housing.”[12] Mandatory reporting strains the patient-physician relationship, driving a wedge between the doctor and patient. Thus, laws intended to deter people from using substances through various punishments and incarceration may be doing more harm than good. County hospitals that mainly serve lower socioeconomic patients encounter more patients without consistent health care access and those with substance use disorders.[13] These hospitals are facing the consequences of the worsening opioid pandemic. At one county hospital where I recently worked, there has been a dramatic increase in newborns with neonatal abstinence syndrome born to mothers with untreated substance use disorders during pregnancy. Infants exposed to drugs prenatally have an increased risk of complications, stillbirth, and life-altering developmental disabilities. At the hospital, I witnessed Child Protective Services removing two newborns with neonatal abstinence syndrome from their mother’s custody. Four similar cases had occurred in the preceding month. In the days leading up to their placement with a foster family, I saw both newborns go through an uncomfortable drug withdrawal. No baby should be welcomed into this world by suffering like that. Yet I felt for the new mothers and realized that heart-wrenching custody loss is not the best approach. During this period, I saw a teenager brought to the pediatric floor due to worsening psychiatric symptoms. He was born with neonatal abstinence syndrome that neither the residential program nor his foster family could manage. His past psychiatric disorders included attention deficit disorder, conduct disorder, major depressive disorder, anxiety disorder, disruptive mood dysregulation disorder, intellectual developmental disorder, and more. During his hospitalization, he was so violent towards healthcare providers that security had to intervene. And his attitude toward his foster parents was so volatile that we were never sure if having them visit was comforting or agitating. Throughout his hospital course, it was difficult for me to converse with him, and I left every interview with him feeling lost in terms of providing an adequate short- and long-term assessment of his psychological and medical requirements. What was clear, however, was that his intellectual and emotional levels did not match his age and that he was born into a society that was ill-equipped to accommodate his needs. Just a few feet away from his room, behind the nurses’ station, were the two newborns feeling the same withdrawal symptoms that this teenager likely experienced in the first few hours of his life. I wondered how similar their paths would be and if they would exhibit similar developmental delays in a few years or if their circumstance may follow the cases hyped about in the media of the 1980s and 1990s regarding “crack babies.” Many of these infants who experienced withdrawal symptoms eventually led normal lives.[14] Nonetheless, many studies have demonstrated that drug use during pregnancy can adversely impact fetal development. Excessive alcohol consumption can result in fetal alcohol syndrome, characterized by growth deficiency, facial structure abnormalities, and a wide range of neurological deficiencies.[15] Smoking can impede the development of the lungs and brain and lead to preterm deliveries or sudden infant death syndrome.[16] Stimulants like methamphetamine can also cause preterm delivery, delayed motor development, attention impairments, and a wide range of cognitive and behavioral issues.[17] Opioid use, such as oxycodone, morphine, fentanyl, and heroin, may result in neonatal opioid withdrawal syndrome, in which a newborn may exhibit tremors, irritability, sleeping problems, poor feeding, loose stools, and increased sweating within 72 hours of life.[18] In 2014, the American Association of Pediatrics (AAP) reported that one newborn was diagnosed with neonatal abstinence syndrome every 15 minutes, equating to approximately 32,000 newborns annually, a five-fold increase from 2004.[19] The AAP found that the cost of neonatal abstinence syndrome covered by Medicaid increased from $65.4 million to $462 million from 2004 to 2014.[20] In 2020, the CDC published a paper that showed an increase in hospital costs from $316 million in 2012 to $572.7 million in 2016.[21] Currently, the impact of the COVID-19 pandemic on the prevalence of newborns with neonatal abstinence syndrome is unknown. I predict that the increase in opioid and polysubstance use during the pandemic will increase the number of newborns with neonatal abstinence syndrome, thereby significantly increasing the public burden and cost.[22] In the 1990s, concerns arose about the potentially irreparable damage caused by intrauterine exposure to cocaine on the development of infants, which led to the popularization of the term “crack babies.”[23] Although no strong longitudinal studies supported this claim at the time, it was not without merit. The Maternal Lifestyle Study (NCT00059540) was a prospective longitudinal observational study that compared the outcomes of newborns exposed to cocaine in-utero to those without.[24] One of its studies revealed one month old newborns with cocaine exposure had “lower arousal, poorer quality of movements and self-regulation, higher excitability, more hypertonia, and more nonoptimal reflexes.”[25] Another study showed that at one month old, heavy cocaine exposure affected neural transmission from the ear to the brain.[26] Long-term follow up from the study showed that at seven years old, children with high intrauterine cocaine exposure were more likely to have externalizing behavior problems such as aggressive behavior, temper tantrums, and destructive acts.[27] While I have witnessed this behavior in the teenage patient during my pediatrics rotation, not all newborns with intrauterine drug exposure are inevitably bound to have psychiatric and behavioral issues later in life. NPR recorded a podcast in 2010 highlighting a mother who used substances during pregnancy and, with early intervention, had positive outcomes. After being arrested 50 times within five years, she went through STEP: Self-Taught Empowerment and Pride, a public program that allowed her to complete her GED and provided guidance and encouragement for a more meaningful life during her time in jail. Her daughter, who was exposed to cocaine before birth, had a normal childhood and ended up going to college.[28] From a public health standpoint, more needs to be done to prevent the complications of substance misuse during pregnancy. Some states consider substance misuse (and even prescribed use) during pregnancy child abuse. Officials have prosecuted countless women across 45 states for exposing their unborn children to drugs.[29] With opioid and polysubstance use on the rise, the efficacy of laws that result in punitive measures seems questionable.[30] So far, laws are not associated with a decrease in the misuse of drugs during pregnancy. Millions of dollars are being poured into managing neonatal abstinence syndrome, including prosecuting women and taking their children away. Rather than policing and criminalizing substance use, pregnant women should get the appropriate care they need and deserve. I. Misconception One: Mothers with Substance Use Disorder Can Get an Abortion If an unplanned pregnancy occurs, one course of action could be to terminate the pregnancy. On the surface, this solution seems like a quick fix. However, the reality is that obtaining an abortion can be challenging due to two significant barriers: accessibility and mandated reporting. Abortion laws vary by state, and in Tennessee, for instance, abortions are banned after six weeks of gestation, typically when fetal heart rhythms are detected. An exception to this is in cases where the mother's life is at risk.[31] Unfortunately, many women with substance use disorders are from lower socioeconomic backgrounds and cannot access pregnancy tests, which could indicate they are pregnant before the six-week cutoff. If a Tennessee woman with substance use disorder decides to seek an abortion after six weeks, she may need to travel to a neighboring state. However, this is not always a feasible option, as the surrounding states (WV, MO, AR, MI, AL, and GA) also have restrictive laws that either prohibit abortions entirely or ban them after six weeks. Moreover, she may be hesitant to visit an obstetrician for an abortion, as some states require physicians by law to report their patients' substance use during pregnancy. For example, Virginia considers substance use during pregnancy child abuse and mandates that healthcare providers report it. This would ultimately limit her to North Carolina if she wants to remain in a nearby state, but she must go before 20 weeks gestation.[32] For someone who may or may not have access to reliable transportation, traveling to another state might be impossible. Without resources or means, these restrictive laws have made it incredibly difficult to obtain the medical care they need. II. Misconception Two: Mothers with SUD are Not Fit to Care for Children If a woman cannot take care of herself, one might wonder how she can take care of another human being. Mothers with substance use disorders often face many adversities, including lack of economic opportunity, trauma from abuse, history of poverty, and mental illness.[33] Fortunately, studies suggest keeping mother and baby together has many benefits. Breastfeeding, for example, helps the baby develop a strong immune system while reducing the mother’s risk of cancer and high blood pressure.[34] Additionally, newborns with neonatal abstinence syndrome who are breastfed by mothers receiving methadone or buprenorphine require less pharmacological treatment, have lower withdrawal scores, and experience shorter hospital stays.[35] Opioid concentration in breastmilk is minimal and does not pose a risk to newborns.[36] Moreover, oxytocin, the hormone responsible for mother-baby bonding, is increased in breastfeeding mothers, reducing withdrawal symptoms and stress-induced reactivity and cravings while also increasing protective maternal instincts.[37] Removing an infant from their mother’s care immediately after birth would result in the loss of all these positive benefits for both the mother and her newborn. The newborns I observed during my pediatrics rotation probably could have benefited from breastfeeding rather than bottle feeding and being passed around from one nurse to the next. They probably would have cried less and suffered fewer withdrawal symptoms had they been given the opportunity to breastfeed. And even if the mothers were lethargic and unresponsive while going through withdrawal, it would still have been possible to breastfeed with proper support. Unfortunately, many believe mothers with substance use disorder cannot adequately care for their children. This pervasive societal bias sets them up for failure from the beginning and greatly inhibits their willingness to change and mend their relationship with their providers. It is a healthcare provider’s duty to provide non-judgmental care that prioritizes the patient’s well-being. They must treat these mothers with the same empathy and respect as any other patient, even if they are experiencing withdrawal. III. Safe Harbor and Medication-Assisted Treatment Addiction is like any other disease and society should regard treatment without stigma. There is no simple fix to this problem, given that it involves the political, legal, and healthcare systems. Punitive policies push pregnant women away from receiving healthcare and prevent them from receiving beneficial interventions. States need to enact laws that protect these women from being reported to authorities. Montana, for example, passed a law in 2019 that provides women with substance use disorders safe harbor from prosecution if they seek treatment for their condition.[38] Medication-assisted treatment with methadone or buprenorphine is the first line treatment option and should be available to all pregnant women regardless of their ability to pay for medical care.[39] To promote continuity of care, health officials could include financial incentives to motivate new mothers to go to follow-up appointments. For example, vouchers for groceries or enrollment in the Special Supplemental Nutrition Program for Women, Infants, and Children (WIC) may offset financial burdens and allow a mother to focus on taking care of her child and her recovery. IV. Mandated Substance Abuse Programs Although the number of people sentenced to state prisons for drug related crimes has been declining, it is still alarming that there were 171,300 sentencings in 2019.[40] Only 11 percent of the 65 percent of our nation’s inmates with substance use disorder receive treatment, implying that the other 89 percent were left without much-needed support to overcome their addiction.[41] It is erroneous to assume that their substance use disorder would disappear after a period without substance use while behind bars. After withdrawal, those struggling with substance use disorder may still have cravings and the likelihood of relapsing remains high without proper medical intervention. Even if they are abstinent for some time during incarceration, the underlying problem persists, and the cycle inevitably continues upon release from custody. In line with the recommendations by Global Commission on Drug Policy and the lessons learned from the failed War on Drugs, one proposed change in our criminal justice system would be to require enrollment and participation in assisted alcohol cessation programs before legal punishment. Policy makers must place emphasis on the safety of the patient and baby rather than the cessation of substance use. This would incentivize people to actively seek medical care, restore the patient-physician relationship, and ensure that they take rehabilitation programs seriously. If the patient or baby is unsafe, a caregiver could intervene while the patient re-enrolls in the program. Those currently serving sentences in prisons and jails can treat their substance use disorder through medication assisted treatment, cognitive behavioral therapy, and programs like Self Taught Empowerment and Pride (STEP). Medication assisted treatment under the supervision of medical professionals can help inmates achieve and maintain sobriety in a healthy and safe way. Furthermore, cognitive behavioral therapy can help to identify triggers and teach healthier coping mechanisms to prepare for stressors outside of jail. Finally, multimodal empowerment programs can connect people to jobs, education, and support upon release. People often leave prisons and jail without a sense of purpose, which can lead to relapse and reincarceration. Structured programs have been shown to decrease drug use and criminal behavior by helping reintegrate productive individuals into society.[42] V. Medical Education: Narcotic Treatment Programs and Suboxone Clinics Another proactive approach could be to have medical residency programs register with the Drug Enforcement Administration (DEA) as Narcotic Treatment Programs and incorporate suboxone clinics into their education and rotations. Rather than family medicine, OB/GYN, or emergency medicine healthcare workers having to refer their patients to an addiction specialist, they could treat patients with methadone for maintenance or detoxification where they would deliver their baby. Not only would this educate and prepare the future generation of physicians to handle the opioid crisis, but it would allow pregnant women to develop strong patient-physician relationships. CONCLUSION Society needs to change from the mindset of tackling a problem after it occurs to taking a proactive approach by addressing upstream factors, thereby preventing those problems from occurring in the first place. Emphasizing public health measures and adequate medical care can prevent complications and developmental issues in newborns and pregnant women with substance use disorders. Decriminalizing drug use and encouraging good health habits during pregnancy is essential, as is access to prenatal care, especially for lower socioeconomic patients. Many of the current laws and regulations that policy makers initially created due to naïve political opinion and unfounded bias to serve the War on Drugs need to be changed to provide these opportunities. To progress as a society, physicians and interprofessional teams must work together to truly understand the needs of patients with substance use disorders and provide support from prenatal to postnatal care. There should be advocation for legislative change, not by providing an opinion but by highlighting the facts and conclusions of scientific studies grounded in scientific evidence, health, security, and human rights. There can be no significant change if society continues to view those with substance use disorders as underserving of care. Only when the perspective shifts to compassion can these mothers and children receive adequate care that rehabilitates and supports their future and empowers them to raise their children. - [1] NIDA. 2023, February 15. Pregnant People with Substance Use Disorders Need Treatment, Not Criminalization. https://nida.nih.gov/about-nida/noras-blog/2023/02/pregnant-people-substance-use-disorders-need-treatment-not-criminalization [2] Substance Use Disorder Hurts Moms and Babies. National Partnership for Women and Families. June 2021 [3] All stories have been fictionalized and anonymized. [4] A History of the Drug War. Drug Policy Alliance. https://drugpolicy.org/issues/brief-history-drug-war [5] The Harrison Narcotic Act (1914) https://www.druglibrary.org/Schaffer/library/studies/cu/cu8.html [6] The War on Drugs. The Global Commission on Drug Policy. Published June 2011. https://www.globalcommissionondrugs.org/reports/the-war-on-drugs [7] Werb D, Rowell G, Guyatt G, Kerr T, Montaner J, Wood E. Effect of drug law enforcement on drug market violence: A systematic review. Int J Drug Policy. 2011;22(2):87-94. doi:10.1016/j.drugpo.2011.02.002 [8] Global Commission on Drug Policy, 2011 [9] Women NA for P. Tennessee’s Fetal Assault Law: Understanding its impact on marginalized women - New York. Pregnancy Justice. Published December 14, 2020. https://www.pregnancyjusticeus.org/tennessees-fetal-assault-law-understanding-its-impact-on-marginalized-women/ [10] Roberts SCM, Nuru-Jeter A. Women’s perspectives on screening for alcohol and drug use in prenatal care. Womens Health Issues Off Publ Jacobs Inst Womens Health. 2010;20(3):193-200. doi:10.1016/j.whi.2010.02.003 [11] Klaman SL, Isaacs K, Leopold A, et al. Treating Women Who Are Pregnant and Parenting for Opioid Use Disorder and the Concurrent Care of Their Infants and Children: Literature Review to Support National Guidance. J Addict Med. 2017;11(3):178-190. doi:10.1097/ADM.0000000000000308 [12] Substance Abuse Reporting and Pregnancy: The Role of the Obstetrician–Gynecologist. https://www.acog.org/en/clinical/clinical-guidance/committee-opinion/articles/2011/01/substance-abuse-reporting-and-pregnancy-the-role-of-the-obstetrician-gynecologist [13] R. Ghertner, G Lincoln The Opioid Crisis and Economic Opportunity: Geographic and Economic Trends. ASPE. Office of Assistant Secretary for Planning and Evaluation. DHHS Revised September 11, 2018 https://aspe.hhs.gov/reports/economic-opportunity-opioid-crisis-geographic-economic-trends [14] Midon, M. Z., Gerzon, L. R., & de Almeida, C. S. (2021). Crack and motor development of babies living in an assistance shelter. ABCS Health Sciences, 46, e021215-e021215. And for example, see Crack Babies: Twenty Years Later : NPR https://www.npr.org/templates/story/story.php?storyId=126478643 [15] Williams JF, Smith VC, the Committee on Substance Abuse. Fetal Alcohol Spectrum Disorders. Pediatrics. 2015;136(5):e20153113. doi:10.1542/peds.2015-3113 [16] CDC Tobacco Free. Smoking During Pregnancy. Centers for Disease Control and Prevention. Published April 11, 2022. https://www.cdc.gov/tobacco/basic_information/health_effects/pregnancy/index.htm [17] Abuse NI on D. What are the risks of methamphetamine misuse during pregnancy? National Institute on Drug Abuse. https://nida.nih.gov/publications/research-reports/methamphetamine/what-are-risks-methamphetamine-misuse-during-pregnancy [18] CDC. Basics About Opioid Use During Pregnancy | CDC. Centers for Disease Control and Prevention. Published July 21, 2021. https://www.cdc.gov/pregnancy/opioids/basics.html [19] Honein MA, Boyle C, Redfield RR. Public Health Surveillance of Prenatal Opioid Exposure in Mothers and Infants. Pediatrics. 2019;143(3):e20183801. doi:10.1542/peds.2018-3801 [20] Winkelman TNA, Villapiano N, Kozhimannil KB, Davis MM, Patrick SW. Incidence and Costs of Neonatal Abstinence Syndrome Among Infants with Medicaid: 2004–2014. Pediatrics. 2018;141(4):e20173520. doi:10.1542/peds.2017-3520 [21] Strahan AE, Guy GP Jr, Bohm M, Frey M, Ko JY. Neonatal Abstinence Syndrome Incidence and Health Care Costs in the United States, 2016. JAMA Pediatr. 2020;174(2):200-202. doi:10.1001/jamapediatrics.2019.4791 [22] Ghose R, Forati AM, Mantsch JR. Impact of the COVID-19 Pandemic on Opioid Overdose Deaths: a Spatiotemporal Analysis. J Urban Health Bull N Y Acad Med. 2022;99(2):316-327. doi:10.1007/s11524-022-00610-0 [23] Mayes LC, Granger RH, Bornstein MH, Zuckerman B. The Problem of Prenatal Cocaine Exposure: A Rush to Judgment. JAMA. 1992;267(3):406-408. doi:10.1001/jama.1992.03480030084043 [24] NICHD Neonatal Research Network. The Maternal Lifestyle Study. clinicaltrials.gov; 2016. https://clinicaltrials.gov/ct2/show/study/NCT00059540 [25] Lester BM, Tronick EZ, LaGasse L, et al. The maternal lifestyle study: effects of substance exposure during pregnancy on neurodevelopmental outcome in 1-month-old infants. Pediatrics. 2002;110(6):1182-1192. doi:10.1542/peds.110.6.1182 [26] Lester BM, Lagasse L, Seifer R, et al. The Maternal Lifestyle Study (MLS): effects of prenatal cocaine and/or opiate exposure on auditory brain response at one month. J Pediatr. 2003;142(3):279-285. doi:10.1067/mpd.2003.112 [27] Bada HS, Bann CM, Bauer CR, et al. Preadolescent behavior problems after prenatal cocaine exposure: Relationship between teacher and caretaker ratings (Maternal Lifestyle Study). Neurotoxicol Teratol. 2011;33(1):78-87. doi:10.1016/j.ntt.2010.06.005 [28] N, P, R. Crack Babies: Twenty Years Later. NPR. Published May 3, 2010. https://www.npr.org/templates/story/story.php?storyId=126478643 [29] Miranda L, Dixon V, September CRP on, 30, 2015. How States Handle Drug Use During Pregnancy http://projects.propublica.org/graphics/maternity-drug-policies-by-state [30] NCDAS: Substance Abuse and Addiction Statistics [2023]. NCDAS. https://drugabusestatistics.org/ [31] (Tenn. Code Ann. § 39-15-216). [32] Institute G. Interactive Map: US Abortion Policies and Access After Roe. https://states.guttmacher.org/policies/ [33] Whitesell M, Bachand A, Peel J, Brown M. Familial, Social, and Individual Factors Contributing to Risk for Adolescent Substance Use. J Addict. 2013;2013:579310. doi:10.1155/2013/579310 [34] CDC. Five Great Benefits of Breastfeeding. Centers for Disease Control and Prevention. Published July 27, 2021. https://www.cdc.gov/nccdphp/dnpao/features/breastfeeding-benefits/index.html [35] Welle-Strand GK, Skurtveit S, Jansson LM, Bakstad B, Bjarkø L, Ravndal E. Breastfeeding reduces the need for withdrawal treatment in opioid-exposed infants. Acta Paediatr. 2013;102(11):1060-1066. doi:10.1111/apa.12378 [36] Ilett KF, Hackett LP, Gower S, Doherty DA, Hamilton D, Bartu AE. Estimated dose exposure of the neonate to buprenorphine and its metabolite norbuprenorphine via breastmilk during maternal buprenorphine substitution treatment. Breastfeed Med Off J Acad Breastfeed Med. 2012;7:269-274. doi:10.1089/bfm.2011.0096 [37] Pedersen CA, Smedley KL, Leserman J, et al. Intranasal Oxytocin Blocks Alcohol Withdrawal in Human Subjects. Alcohol Clin Exp Res. 2013;37(3):484-489. doi:10.1111/j.1530-0277.2012.01958.x [38] Montana SB0289. https://leg.mt.gov/bills/2019/billhtml/SB0289.htm [39] Mullins N, Galvin SL, Ramage M, Gannon M, Lorenz K, Sager B, Coulson CC. Buprenorphine and Naloxone Versus Buprenorphine for Opioid Use Disorder in Pregnancy: A Cohort Study. J Addict Med. 2020 May/Jun;14(3):185-192. doi: 10.1097/ADM.0000000000000562. PMID: 31567599. [40] Drug Related Crime Statistics [2023]: Offenses Involving Drug Use. NCDAS. https://drugabusestatistics.org/drug-related-crime-statistics/ [41] Association APH. Online only: Report finds most U.S. inmates suffer from substance abuse or addiction. Nations Health. 2010;40(3):E11-E11. [42] Principles of Drug Addiction Treatment: A Research-Based Guide (Third Edition) | NIDA Archives. Published January 17, 2018. http://archives.nida.nih.gov/publications/principles-drug-addiction-treatment-research-based-guide-third-edition