Journal articles on the topic 'Family-centered goals'
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Molly, Vincent, Lorraine M. Uhlaner, Alfredo De Massis, and Eddy Laveren. "Family-centered goals, family board representation, and debt financing." Small Business Economics 53, no. 1 (May 7, 2018): 269–86. http://dx.doi.org/10.1007/s11187-018-0058-9.
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Kotlar, Josip, and Alfredo De Massis. "Goal Setting in Family Firms: Goal Diversity, Social Interactions, and Collective Commitment to Family-Centered Goals." Entrepreneurship Theory and Practice 37, no. 6 (September 30, 2013): 1263–88. http://dx.doi.org/10.1111/etap.12065.
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Becerra, Manuel, Cristina Cruz, and Chris Graves. "Innovation in Family Firms: The Relative Effects of Wealth Concentration Versus Family-Centered Goals." Family Business Review 33, no. 4 (September 9, 2020): 372–92. http://dx.doi.org/10.1177/0894486520953700.
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Drawing on agency and behavioral perspectives, we disentangle two critical determinants of innovation strategies among family firms, namely, the family’s wealth concentration (WC) in its business and the family’s emphasis on family-centered goals (FCGs). Our results from a survey of Australian family firms show opposite and completely independent effects of WC and family-centered noneconomic goals on family firms’ innovation strategies. While higher WC is negatively associated with firm innovation, a greater emphasis placed on family-centered noneconomic goals has a positive impact, which seems to be the key determinant of innovation strategies in family firms.
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Chrisman, James J., Jess H. Chua, Allison W. Pearson, and Tim Barnett. "Family Involvement, Family Influence, and Family-Centered Non-Economic Goals in Small Firms." Entrepreneurship Theory and Practice 36, no. 2 (September 7, 2010): 267–93. http://dx.doi.org/10.1111/j.1540-6520.2010.00407.x.
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Teshale, Salom. "THE RAISE COUNCIL'S WORK IN DEVELOPING A NATIONAL FAMILY CAREGIVING STRATEGY." Innovation in Aging 6, Supplement_1 (November 1, 2022): 285. http://dx.doi.org/10.1093/geroni/igac059.1133.
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Abstract Since 2019, the RAISE Family Caregiver Advisory Council (FCAC) has met regularly to carry out its work of developing a national family caregiving strategy. This strategy incorporates five goals to support family caregivers, and key actions that a range of stakeholders can carry out centered around these goals. This overview will describe the RAISE FCAC’s work in developing the national family caregiving strategy, and highlight the development of recommendations and key actions to support the fourth goal, “Family caregivers’ lifetime financial and employment security is protected and enhanced.” This goal’s recommendations include supporting caregivers through flexible workplace policies; supporting affordable long-term services and supports; supporting financial education and planning; and reducing overall negative financial impacts of caregiving short and long-term.
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Resnick, Barbara. "INTERVENTION FIDELITY IN THE FAMILY-CENTERED FUNCTION-FOCUSED CARE INTERVENTION." Innovation in Aging 6, Supplement_1 (November 1, 2022): 96–97. http://dx.doi.org/10.1093/geroni/igac059.384.
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Abstract This session will provide a description of the treatment fidelity (TF) plan from the Family-centered Function-focused Care (Fam-FFC) trial. Components of the TF plan, measures, procedures for implementation, and findings will be presented, and discussed within the context of the COVID-19 pandemic. The components of the Fam-FFC TF plan and results include: 1) Delivery based on completion of the steps in Fam-FFC ; 2) Receipt based on evidence of Staff knowledge of Fam-FFC (percentage of nursing staff that demonstrated test scores above 80%); 3) Enactment based on achievement of goals using the Goal Attainment Scale ; completion of the Fam-Path Audit of bedside goals and treatment plans, post-acute follow-up and plan update ; and evidence of Fam-FFC based on the Fam-FFC Behavior Checklist (80% staff performance of Fam-FFC). The TF plan demonstrated evidence of delivery, receipt and enactment of study activities. Findings will be used to develop an implementation trial.
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Carter, Carolyn S. "Using African-Centered Principles in Family-Preservation Services." Families in Society: The Journal of Contemporary Social Services 78, no. 5 (October 1997): 531–38. http://dx.doi.org/10.1606/1044-3894.823.
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The author discusses African-centered family preservation services and the use of a strengths perspective in work with African American families, focusing on the heterogeneous structure of African American families and critical issues facing African American communities. African traditions and ways of integrating these traditions into family-preservation work with African American families are described. Integrating African traditions reflects a holistic approach to family-preservation services, improves the breadth and cultural relevance of services, protects children, and empowers families within the natural context of their communities. These outcomes complement the goals of family-preservation services and enhance the chances of families remaining intact.
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Alwadani, Rawa, and Nelson Oly Ndubisi. "Sustainable family business." International Journal of Manpower 41, no. 7 (October 25, 2019): 945–65. http://dx.doi.org/10.1108/ijm-08-2019-0359.
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Purpose Family centered non-economic (FCNE) goals, such as environmental and social goals, are sometimes strenuous to “sell” to non-family members in a family business, and are often open to resistance. The purpose of this paper is to identify socio-psychological mechanisms for achieving FCNE goals because, in addition to economic goals, they are the other two components of the triple bottom line. Design/methodology/approach Through a juxtaposition of the literature on family businesses, and the theories of mindfulness and psychological ownership, this paper argues for the facilitating roles of family involvement and mindful organizing in the achievement of FCNE goals. An example of how a Kuwaiti oil company implements these ideas is appended. Findings A moderated link between family involvement, mindful organizing and FCNE goal of environmental sustainability. Besides its direct effect on environmental sustainability, mindful organizing also has a potential mediating role in the relationship between family involvement and environmental sustainability. Psychological ownership, environmental sensitivity and individual mindfulness will moderate the relationship between mindful organizing and the achievement of environmental sustainability goals. Research limitations/implications The paper presents ten propositions and argues that three types of family involvement (ownership, management and inter-generational), together with non-family engagement (through mindful organizing) would lead to success in achieving the FCNE goal of environmental sustainability. Psychological ownership, environmental sensitivity and individual mindfulness are potential moderators. Practical implications The paper suggests some key drivers of FCNE goal of environmental sustainability as well as several contingent factors. Applicable to family businesses, owners and/or managers of similar firms can apply knowledge from this study in the pursuit of environmental sustainability. Originality/value The paper’s model advances the current understanding of the link between family involvement, mindful organizing, environmental sustainability, psychological ownership, environmental sensitivity and individual mindfulness in the context of family business. The paper further suggests new future research directions.
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Chrisman, James J., Kristen Madison, and Taewoo Kim. "A Dynamic Framework of Noneconomic Goals and Inter-Family Agency Complexities in Multi-Family Firms." Entrepreneurship Theory and Practice 45, no. 4 (April 4, 2021): 906–30. http://dx.doi.org/10.1177/10422587211005775.
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Multi-family firms represent an important and complex type of family firm that is not as well understood as single-family firms. We develop a governance-based framework of the agency complexities in multi-family firms, theorizing that divergent family-centered noneconomic goals between the owning families create complex inter-family agency problems that are intensified by evolving family dynamics. We propose governance mechanisms that address these problems by limiting opportunistic behavior associated with the pursuit of noneconomic goals related to firm control, family altruism, social capital, and transgenerational succession. We then present a future research agenda that can expand our knowledge of multi-family firms.
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Epperly, Ted. "Person-Centered Care at the End of Life." International Journal of Person Centered Medicine 3, no. 3 (February 12, 2014): 205–9. http://dx.doi.org/10.5750/ijpcm.v3i3.423.
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Person-centered care at the end of life is an area of medicine we must all be familiar and comfortable with. This is the case as it will involve not only the people we care for but also our own family members, loved ones, and eventually ourselves. Forty percent of all health care dollars in the United States health care system are spent in the last two years of a person’s life unless meaningful person-centered discussions occur. Providing person-centered care for the remaining months of a person’s life is of extreme importance in helping people achieve their wishes and goals, maximize palliation, comfort, dignity, and quality of life. This paper will focus on maximizing person-centered approaches of active listening and discussion, advanced care planning, clear communication, timely engagement of support services, family support, and compassion. Our goal with person-centered care at the end of life is to allow as many people as possible a good death.
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O’Toole, Gjyn. "IMPROVING OUTCOMES BY ACHIEVING PERSON-CENTERED CARE: A MODEL TO GUIDE PERSON-FOCUSED PRACTICE." International Journal of Person Centered Medicine 10, no. 3 (October 13, 2022): 65–77. http://dx.doi.org/10.5750/ijpcm.v10i3.1066.
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Governments and organizations around the world have adopted the term person-centered care to describe and guide health care services and policies. While this concept is valued in practice it seems it is not always evident to the person/families. This unfortunate reality prompted exploration of this concept. The aim of this exploration was to identify the recognized characteristics of person/family-centered practice. It identified the difficulty of defining this type of practice along with potential barriers to achieving person-centered care in everyday practice. This led to the development of a model to guide all health professionals and guide education of trainee health professionals for delivering person/family-centered care. Exploration of a person-centered approach targeted literature specifically discussing person/family-centered care. The results led to the creation of a three-step model of person/family-centered goals and practice. The model has implications for all health professionals. It suggests characteristics of effective person/family-centered care, thereby potentially producing the ultimate aim of health care: satisfying outcomes for all stakeholders including the person/family, health professionals, employers, and policy makers.
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Stowers, Katie, Rebecca Charlton, and Rachel Vandermeer. "When Daddy Is Dying: Facilitating Family Centered Adult Goals of Care Discussions (FR413)." Journal of Pain and Symptom Management 55, no. 2 (February 2018): 600–601. http://dx.doi.org/10.1016/j.jpainsymman.2017.12.094.
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Mendyka, Brian E. "The Dying Patient in the Intensive Care Unit: Assisting the Family in Crisis." AACN Advanced Critical Care 4, no. 3 (August 1, 1993): 550–57. http://dx.doi.org/10.4037/15597768-1993-3043.
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Critically ill patients belong to larger phenomenologic systems, their families. What affects one member affects other system members. Nursing care requires meticulous observation and assessment of family concerns, understanding of clinical events, and practical experience to achieve positive outcomes even if a death occurs. It seems easy to dismiss the family from the clinical and technical matters of the critical care unit, especially when much nursing energy goes into operating peripheral machinery, performing tasks, and pursuing ever-changing patient-centered goals. The following case study attempts to redefine and redirect the focus of what “patient-centered” means to include the nurse, the patient, and the family in the meaning of the core of family-centered care
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Lisle-Porter, Martine De, and Ann Marie Podruchny. "The Dying Neonate: Family-Centered End-of-Life Care." Neonatal Network 28, no. 2 (March 2009): 75–83. http://dx.doi.org/10.1891/0730-0832.28.2.75.
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There is a need in the NICU for an end-of-life care guideline that nurses can follow when working with dying infants and their families. Maintaining intravenous access to relieve the infant’s pain, communicating sensitively to the family, and creating precious, everlasting memories are goals that should be part of every dying infant’s care. The nurse’s ability to partner with the family in caring for the infant is integral to helping the family take the first steps in their grief journey. Evidence-based literature provides NICU nurses with the knowledge that they are the facilitators of end-of-life care for dying infants. New mothers and fathers are not aware of the caring parental tasks they can perform for their dying baby. They look to and depend on their infant’s nurses to encourage them. The guideline included here provides nurses with a tool for ensuring that families have the opportunity to create memories that will not only help them with their immediate pain, but also comfort them for a lifetime.
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Fulcher, Leon. "Learner-Centered Outcomes in Subject-Centered Institutions: Metaphors for Muggle Learning." Learning and Teaching in Higher Education: Gulf Perspectives 1, no. 1 (December 1, 2004): 54–60. http://dx.doi.org/10.18538/lthe.v1.n1.05.
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Learner-centered education faces many challenges when introduced to university centers where faculty socialization into subject-centered teaching is the dominant ethos. Three warning metaphors drawn from the literature of J K Rowling are used to illuminate challenges associated with learner-centered education. The first metaphor focuses attention on ways in which institutional structures in disciplinary education are frequently altered confronting faculty and students with organizational turbulence. The second metaphor warns that individual learners easily distracted from family and personal career goals. The final metaphor highlights ways in which learning – to be of value to students – requires personal ownership and fit.
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Fratantoni, Karen, Jessica Livingston, Sandra E. Schellinger, Samar M. Aoun, and Maureen E. Lyon. "Family-Centered Advance Care Planning: What Matters Most for Parents of Children with Rare Diseases." Children 9, no. 3 (March 21, 2022): 445. http://dx.doi.org/10.3390/children9030445.
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Few studies have described the goals and wishes of parents caring for their children with rare diseases, specifically when children are unable to communicate their preferences directly. The purpose of this study was to describe the parent’s understanding of their child’s illness, goals of care, and what mattered most to their child from the parent’s perspective. Six families completed a feasibility study of the FAmily CEntered (FACE)-Rare pACP intervention. Qualitative content analysis was performed on transcripts of videotaped responses to the Respecting Choices Next Steps pACP Conversation facilitated conversation guide about the goals of care. Codes were grouped into themes, with direct participant quotations representing the themes. Five themes emerged: getting out and moving freely; feeling included and engaged; managing symptoms and disease burden; coordinating care among many care team members; and managing today and planning for the future. In the context of pACP, families reported that what mattered most to their children included the freedom of movement and human connection and engagement, while parents strived to be effective caregivers and advocates for their child with a rare and severely disabling disease.
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Boltz, Marie, Joanne Roman Jones, and Robin Hermann. "Engaging Families in Function-Focused Care: Goal Attainment and Associated Outcomes." Innovation in Aging 4, Supplement_1 (December 1, 2020): 762. http://dx.doi.org/10.1093/geroni/igaa057.2751.
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Abstract Partnering with families to develop function-focused plans for hospitalized persons with dementia (PWD) improves both the hospital experience and patient outcomes. This secondary analysis included patients enrolled in the intervention arm of the on-going Family-centered Function-focused Care (Fam-FFC).study. This study examined the goals co-established by family caregivers, PWD, and nurses to prevent hospital-acquired complications and promote functional and cognitive recovery. The influence of goal attainment upon delirium and physical function at discharge was also examined. The majority of patients (N=162) were female (65%), black (53%) with a mean age of 82.7 (SD= 8.2). Goal attainment ranged from -2 to 2; mean = -0.24 (SD= 0.75). The goals (N=432) represent three main areas: mobility, self-care, and cognitive stimulation. Controlling for age and admission function, goal attainment was associated with less discharge delirium (F=3.2, p = .022) but not discharge function. Results support the contribution of function-focused care to improving delirium outcomes.
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Rosenberg, Ellen, Tamara Carver, Nina Mamishi, and Gillian Bartlett. "What Role Can Trained Volunteers Add to Chronic Disease Care of Immigrants?" Journal of Immigrant and Minority Health 22, no. 6 (September 15, 2020): 1281–86. http://dx.doi.org/10.1007/s10903-020-01079-2.
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AbstractTo help primary care teams improve patient-centered care, we elicited health and life goals of immigrants with a chronic disease. We conducted an exploratory study of the (1) acceptability of home visits by volunteers to collect health information and (2) content of health and life goals within a primary care program for immigrants with chronic disease. Pairs of trained community volunteers visited 23 patients in their homes and asked them to identify three life goals and three health goals. We conducted content analyses of written notes. Health goals were related to disease prevention and symptom control, family well-being, own quality of life, own or family members’ work and/or financial situation. Life goals concerned family well-being, their own quality of life, work/financial situation and health. Given the limited time health professionals have with their patients, trained community volunteers could be important members of primary care teams caring for immigrants.
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Kammerlander, Nadine, Holger Patzelt, Judith Behrens, and Christian Röhm. "Organizational Ambidexterity in Family-Managed Firms: The Role of Family Involvement in Top Management." Family Business Review 33, no. 4 (November 9, 2020): 393–423. http://dx.doi.org/10.1177/0894486520961645.
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Organizational ambidexterity is vital for family firms’ long-term success, yet we still lack sufficient insights into the role of family involvement in top management in this context. Building on research on family firm innovation and diversity, we argue there are curvilinear relationships between family involvement in top management and exploration, exploitation, and organizational ambidexterity. We further propose that these (inverse) U-shaped relationships are affected by family CEOs’ family-centered noneconomic goals. Multisource data on 109 family-managed firms support most of our hypotheses and provide a nuanced understanding of how diversity within top management affects family firms’ innovative behavior.
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Magnuson, Allison, James Wallace, Beverly Canin, Selina Chow, William Dale, Supriya G. Mohile, and Lauren M. Hamel. "Shared Goal Setting in Team-Based Geriatric Oncology." Journal of Oncology Practice 12, no. 11 (November 2016): 1115–22. http://dx.doi.org/10.1200/jop.2016.013623.
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We present the case of a 92-year-old man, MH, who was given a diagnosis of colorectal cancer. His primary care physician, surgeon, geriatric oncologist, and family members all played important roles in his care. MH’s case is an example of a lack of explicit shared goal setting by the health care providers with the patient and family members and how that impeded care planning and health. This case demonstrates the importance of explicitly discussing and establishing shared goals in team-based cancer care delivery early on and throughout the care process, especially for older adults. Each individual member’s goals should be understood as they fit within the overarching shared team goals. We emphasize that shared goal setting and alignment of individual goals is a dynamic process that must occur several times at critical decision points throughout a patient’s care continuum. Providers and researchers can use this illustrative case to consider their own work and contemplate how shared goal setting can improve patient-centered care and health outcomes in various team-based care settings. Shared goal setting among team members has been demonstrated to improve outcomes in other contexts. However, we stress, that little investigation into the impact of shared goal setting on team-based cancer care delivery has been conducted. We list immediate research goals within team-based cancer care delivery that can provide a foundation for the understanding of the process and outcomes of shared goal setting.
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Bailey, Donald B., Virginia Buysse, Rebecca Edmondson, and Tina M. Smith. "Creating Family-Centered Services in Early Intervention: Perceptions of Professionals in Four States." Exceptional Children 58, no. 4 (February 1992): 298–309. http://dx.doi.org/10.1177/001440299205800403.
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This article describes professional perceptions of the current status of family involvement in early intervention programs in four states. Significant discrepancies between current and ideal practices were found in four dimensions: parent involvement in decisions about child assessment, parent participation in assessment, parent participation in the team meeting and decision making, and the provision of family goals and services. In identifying barriers to ideal programs, professionals most frequently mentioned family barriers (35.8%) and system barriers (35.1%). Professional barriers, or those related to a lack of skill, accounted for only 14.8% of the barriers mentioned.
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Dombrowski, Nicholas, and Jennifer Hanson. "Tennis: a promising approach to family-centered physical activity and health promotion." ITF Coaching & Sport Science Review 29, no. 84 (August 31, 2021): 9–11. http://dx.doi.org/10.52383/itfcoaching.v29i84.199.
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Despite global goals to reverse the prevalence of obesity and inactivity, little to no progress has been made. This article presents the details of a tennis-based, family-centered program that can serve as a model for future wellness interventions. The program succeeded in providing a source of physical activity for the children and adults involved. Participant feedback confirmed that the program was well received and that an expanded program would be feasible. Tennis appears to be a viable platform for health promotion, and tennis professionals looking to build partnerships for the purpose of growing the game should keep in mind potential public health stakeholders.
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Jones, Judy, Sylvia Rodger, Anna Walpole, and Natasha Bobir. "Holding the Cards: Empowering Families Through an ASD Family Goal Setting Tool." Topics in Early Childhood Special Education 39, no. 2 (March 22, 2018): 117–30. http://dx.doi.org/10.1177/0271121418766240.
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Collaborative goal setting is recognized as a hallmark of good practice in early intervention (EI). This qualitative study describes mothers’ and practitioners’ perceptions of the utility of the Family Goal Setting Tool: Autism Spectrum Disorder Version (FGST: ASD Version), which supports family identification and prioritization of goals and collaborative engagement in goal setting meetings. Participants included nine mothers and 11 practitioners involved in an autism spectrum disorder–specific EI service in Australia. Participants were interviewed individually or in focus groups, with conversations transcribed verbatim. Inductive content analysis was employed. Four themes emerged with both mothers and practitioners, suggesting the tool facilitated (a) a comprehensive approach, (b) collaboration, (c) goal prioritization, and (d) reduction in stress of goal setting. Practitioners also described the tool as empowering families and enabling family-centered practice. Mothers and practitioners both reported positive impacts of using the FGST: ASD Version and recommended its continued use.
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Levy, Kathryn, Pei C. Grant, Christopher W. Kerr, David J. Byrwa, and Rachel M. Depner. "Hospice Patient Care Goals and Medical Students’ Perceptions: Evidence of a Generation Gap?" American Journal of Hospice and Palliative Medicine® 38, no. 2 (June 26, 2020): 114–22. http://dx.doi.org/10.1177/1049909120934737.
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Background: The ability to perceive care goals of the dying may be an indicator of future quality patient-centered care. Research conducted on end-of-life goals indicates discrepancies between patients and physicians. Objective: The aim of this study is to compare end-of-life care goals of hospice patients and medical student perceptions of patient care goals. Design: Hospice patients and medical students were surveyed on their care goals and perceptions, respectively, using an 11-item survey of goals previously identified in palliative care literature. Medical student empathy was measured using the Interpersonal Reactivity Index. Settings/Participants: Eighty hospice patients and 176 medical students (97 first-year and 79 third-year) in a New York State medical school. Results: Medical students ranked 7 of the 11 care goals differently than hospice patients: not being a burden to family ( p < .001), time with family and friends ( p = .002), being at peace with God ( p < .001), dying at home ( p = .004), feeling that life was meaningful ( p < .001), living as long as possible ( p < .001), and resolving conflicts ( p < .001). Third-year students were less successful than first-year students in perceiving patient care goals of hospice patients. No significant differences in medical student empathy were found based on student year. Conclusions: Medical students, while empathetic, were generally unsuccessful in perceiving end-of-life care goals of hospice patients in the psychosocial and spiritual domains. Differences impeding the ability of medical students to understand these care goals may be generationally based. Increased age awareness and sensitivity may improve future end-of-life care discussions. Overall, there is a need to recognize the greater dimensionality of the dying in order to provide the most complete patient-centered care.
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Boltz, Marie, Ashley Kuzmik, Barbara Resnick, Irene Best, and Jacqueline Mogle. "Engagement of Family in a Goal Setting Strategy: Impact Upon 30-Day Hospital Readmissions." Innovation in Aging 5, Supplement_1 (December 1, 2021): 373. http://dx.doi.org/10.1093/geroni/igab046.1447.
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Abstract Family-centered Function-focused Care (Fam-FFC) works with family caregivers as care partners in the assessment, function-promoting goal setting, implementation, and evaluation of goal attainment during hospitalization and immediate post-acute period. ANCOVA technique examined the preliminary impact of Fam-FFC upon 30-day hospital readmissions and logistic regression tested the association of goal attainment, measured with the Goal Attainment Scale (GAS) with 30-day hospital readmissions. The majority of the patients were Black (50%), female (62%), had a mean age of 81.6 (SD=8.4), mean Barthel Index of 60.29 (SD=27.7), and mean MoCA of 10.67 (SD=7.0). Goals represented six main categories: mobility, cognition, self-care, toileting, sleep, and pain management. Patients in the intervention group had less 30-day hospitalizations (F= 4.6, p=.033) and goal attainment was significantly associated with less recidivism (B=.179, Wald= 2.8 (1), p= .045). FamFFC shows promise in reducing 30-day hospital readmissions; results support the contribution of family engagement and use of GAS
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Jewell, Vanessa, Yongyue Qi, Emily Knezevich, Amy Abbott, Julia Shin, and Brianne Bulleigh. "Evaluation of a Rural Telehealth Occupation-Based Coaching Intervention for Type 1 Diabetes Health Management." American Journal of Occupational Therapy 76, Supplement_1 (July 1, 2022): 7610510018p1. http://dx.doi.org/10.5014/ajot.2022.76s1-rp18.
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Abstract Date Presented 03/31/2022 The complexity of diabetes management for young children in rural communities necessitates novel family interventions. This randomized control trial evaluated the preliminary effectiveness of a telehealth occupation-based coaching intervention. Although no statistical significance was found for child health outcomes or family quality of life, significant improvement in family-centered goals and parent locus of control were detected. Primary Author and Speaker: Vanessa Jewell Additional Authors and Speakers: Julia Shin, Brianne Bulleigh Contributing Authors: Yongyue Qi, Emily Knezevich, Amy Abbott
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Ramchandran, Kavitha, Derek Galligan, Erika L. Tribett, Melissa Valentine, Meryl Selig, Douglas W. Blayney, and Steven M. Asch. "Building a patient-centered model: Palliative medicine and cancer care." Journal of Clinical Oncology 32, no. 31_suppl (November 1, 2014): 75. http://dx.doi.org/10.1200/jco.2014.32.31_suppl.75.
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75 Background: Palliative medicine (PM) improves outcomes for cancer patients. Still, there is limited evidence around components of an efficient, patient-centered model for integrating PM into oncologic care. While PM is committed to aligning with a patient's goals of care, very few programs incorporate their input into design or evaluation. The aim of this project is to combine best practice in PM with perspectives of patients, families and providers to develop an empathic PM service. We hypothesize that collaboration with stakeholders and user experience experts will result in a feasible, impactful and translatable model of care that aligns with patient and family goals. Methods: We are conducting semi-structured interviews with 30 patients, family members and 30 oncologists. Patient interviews assess needs and coping mechanisms. Provider interviews assess perceptions and experiences around PM. We will conduct observations to understand how patients and providers interact and how current protocols are operationalized. Data will be coded and analyzed for major themes. An expert panel of patients, family members, health care providers and design experts will assimilate the data and make recommendations for the prototype care model design. The model will be piloted and evaluated in fall 2014. Outcome metrics include patient satisfaction, symptom management, utilization, mortality, and others identified during development. Data from the pilot will inform intervention improvements in preparation for a large-scale, 12- month pilot in an outpatient PM clinic. Results: Preliminary work includes the development of a novel patient and family interview protocol that integrates cutting-edge research on PM with best practices for conducting empathic interviews. We will present initial results from these interviews at the symposium, as well as our iterative design process. Conclusions: This project integrates data on patient and family experience with known best practices to develop a patient-centered model for palliative cancer care. The development process and potential outcomes hold significant promise for the design of patient and provider-centered care models, especially those related to chronic and serious illnesses.
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Revilla, Antonio J., Ana Pérez-Luño, and María Jesús Nieto. "Does Family Involvement in Management Reduce the Risk of Business Failure? The Moderating Role of Entrepreneurial Orientation." Family Business Review 29, no. 4 (October 4, 2016): 365–79. http://dx.doi.org/10.1177/0894486516671075.
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This study explores the question of whether—and under which circumstances—family involvement helps avoid business failure. We hypothesize that it is family involvement in management, rather than ownership, which reduces the risk of failure during economic downturns; however, this effect is negatively affected by the firm’s entrepreneurial orientation (EO). We argue that EO hinders reaching consensuses on and commitment to family-centered goals, which are focused on long-term survival. We analyze 369 manufacturing firms in Spain from 2007 to 2013, and find that family involvement in management reduces the risk of business failure, but this effect decreases as EO increases.
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Roberts, Tonya, Elizabeth Cox, Thuy Dan Tran, and Hannah Tepsa. "Resident and Family Engagement in Care Conferences: Important Processes and Supporting Strategies." Innovation in Aging 5, Supplement_1 (December 1, 2021): 269. http://dx.doi.org/10.1093/geroni/igab046.1040.
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Abstract Self-determination is a core value of person-centered care. Research has shown residents and families want to be involved in decisions about care. Care conferences are one existing structure where residents and families can engage in decision-making about care goals. However, there are few tools to support effective engagement. To inform future tool development, this study sought to understand what resident and family stakeholders value about engaging in care conferences. In virtual meetings, 16 stakeholders identified 3 key areas of engagement: being informed about health/well-being, influencing care goals, and advocating for needs. They indicated current approaches do not achieve these engagement goals, which is particularly problematic during COVID when families cannot engage in person. Stakeholders offered ideas for supporting engagement such as provision of data before the conference. The study has implications for individualizing care conferences and encouraging resident and family engagement in decision-making both during and beyond COVID.
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Brodie, Nicola, Bruce Bernstein, Francis McNesby, and Renee Turchi. "The Experience of Latina Mothers of Children and Youth With Special Health Care Needs: A Qualitative Study." Global Pediatric Health 6 (January 2019): 2333794X1985139. http://dx.doi.org/10.1177/2333794x19851390.
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Children and youth with special health care needs (CYSHCN) comprise a growing proportion of the pediatric population; the patient- and family-centered medical home provides a comprehensive model for caring for these patients. Given the limited literature available as well as extreme patient vulnerability, we sought to understand the experience of Latino parents in caring for their CYSHCN within our patient-centered medical home in an urban neighborhood in North Philadelphia. A convenience sample of 14 mothers or grandmothers of CYSHCN participated in semistructured interviews, which were analyzed using a thematic, constant comparative approach to identify common themes. Themes identified included “Waiting,” “Communication/Trust,” “All-Consuming Requirements of Care/Sacrifice,” and “Fate/Faith/Blessings.” These themes corresponded with identified goals of the patient-centered medical home. Our findings suggest that the principles of the patient-centered medical home can be applied in unique ways to caring for this unique patient population.
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Lin, Jody L., Bernd Huber, Ofra Amir, Sebastian Gehrmann, Kimberly S. Ramirez, Kimberly M. Ochoa, Steven M. Asch, Krzysztof Z. Gajos, Barbara J. Grosz, and Lee M. Sanders. "Barriers and Facilitators to the Implementation of Family-Centered Technology in Complex Care: Feasibility Study." Journal of Medical Internet Research 24, no. 8 (August 23, 2022): e30902. http://dx.doi.org/10.2196/30902.
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Background Care coordination is challenging but crucial for children with medical complexity (CMC). Technology-based solutions are increasingly prevalent but little is known about how to successfully deploy them in the care of CMC. Objective The aim of this study was to assess the feasibility and acceptability of GoalKeeper (GK), an internet-based system for eliciting and monitoring family-centered goals for CMC, and to identify barriers and facilitators to implementation. Methods We used the Consolidated Framework for Implementation Research (CFIR) to explore the barriers and facilitators to the implementation of GK as part of a clinical trial of GK in ambulatory clinics at a children’s hospital (NCT03620071). The study was conducted in 3 phases: preimplementation, implementation (trial), and postimplementation. For the trial, we recruited providers at participating clinics and English-speaking parents of CMC<12 years of age with home internet access. All participants used GK during an initial clinic visit and for 3 months after. We conducted preimplementation focus groups and postimplementation semistructured exit interviews using the CFIR interview guide. Participant exit surveys assessed GK feasibility and acceptability on a 5-point Likert scale. For each interview, 3 independent coders used content analysis and serial coding reviews based on the CFIR qualitative analytic plan and assigned quantitative ratings to each CFIR construct (–2 strong barrier to +2 strong facilitator). Results Preimplementation focus groups included 2 parents (1 male participant and 1 female participant) and 3 providers (1 in complex care, 1 in clinical informatics, and 1 in neurology). From focus groups, we developed 3 implementation strategies: education (parents: 5-minute demo; providers: 30-minute tutorial and 5-minute video on use in a clinic visit; both: instructional manual), tech support (in-person, virtual), and automated email reminders for parents. For implementation (April 1, 2019, to December 21, 2020), we enrolled 11 providers (7 female participants, 5 in complex care) and 35 parents (mean age 38.3, SD 7.8 years; n=28, 80% female; n=17, 49% Caucasian; n=16, 46% Hispanic; and n=30, 86% at least some college). One parent-provider pair did not use GK in the clinic visit, and few used GK after the visit. In 18 parent and 9 provider exit interviews, the key facilitators were shared goal setting, GK’s internet accessibility and email reminders (parents), and GK’s ability to set long-term goals and use at the end of visits (providers). A key barrier was GK’s lack of integration into the electronic health record or patient portal. Most parents (13/19) and providers (6/9) would recommend GK to their peers. Conclusions Family-centered technologies like GK are feasible and acceptable for the care of CMC, but sustained use depends on integration into electronic health records. Trial Registration ClinicalTrials.gov NCT03620071; https://clinicaltrials.gov/ct2/show/NCT03620071
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Hahn, Ellen J., Craig Wilmhoff, Mary Kay Rayens, Nicholas B. Conley, Emily Morris, Angela Larck, Trista Allen, and Susan M. Pinney. "High School Students as Citizen Scientists to Decrease Radon Exposure." International Journal of Environmental Research and Public Health 17, no. 24 (December 8, 2020): 9178. http://dx.doi.org/10.3390/ijerph17249178.
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Residents in rural Kentucky (KY) and suburban Ohio (OH) expressed concerns about radon exposure and lung cancer. Although 85% of lung cancer cases are caused by tobacco smoke, radon exposure accounts for 10–15% of lung cancer cases. Academic and community members from the University of KY and the University of Cincinnati developed and pilot-tested a family-centered, youth-engaged home radon testing toolkit. The radon toolkit included radon information, and how to test, interpret, and report back findings. We educated youth as citizen scientists and their teachers in human subjects protection and home radon testing using the toolkit in the classroom. Youth citizen scientists explained the study to their parents and obtained informed consent. One hundred students were trained in human subjects protection, 27 had parental permission to be citizen scientists, and 18 homeowners completed surveys. Radon values ranged from < 14.8 Bq/m3 to 277.5 Bq/m3. Youth were interested and engaged in citizen science and this family-centered, school-based project provided a unique opportunity to further the healthy housing and quality education components of the Sustainable Development Goals for 2030. Further research is needed to test the impact of student-led, family-centered citizen science projects in environmental health as part of school curricula.
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Stanek, Charis, Charleen I. Theroux, Anna L. Olsavsky, Kylie N. Hill, Joseph R. Rausch, Sarah H. O’Brien, Gwendolyn P. Quinn, Cynthia A. Gerhardt, and Leena Nahata. "Study protocol for fertility preservation discussions and decisions: A family-centered psychoeducational intervention for male adolescents and emerging adults newly diagnosed with cancer and their families." PLOS ONE 17, no. 2 (February 16, 2022): e0263886. http://dx.doi.org/10.1371/journal.pone.0263886.
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Many childhood cancer survivors desire biological children but are at risk for infertility after treatment. One option for mitigating risk is the use of fertility preservation prior to gonadotoxic therapy. Adolescents and emerging adults may rely on their parents to help them decide whether to use fertility preservation. While this is often a collaborative process, it is currently unknown how parents can optimally support adolescents and emerging adults through this decision. To address this gap, we developed a family-centered, psychoeducational intervention to prompt adolescents and emerging adults to reflect on their future parenthood goals and attitudes towards fertility preservation, as well as to prompt their parents (or other caregivers) to reflect on their own and their child’s perspectives on the topic. In this randomized controlled trial, families will be randomized to either the standard of care control group (fertility consult) or the intervention group. After their fertility consult, adolescents and emerging adults and parents in the intervention group will complete a fertility preservation values clarification tool and then participate in a guided conversation about their responses and the fertility preservation decision. The primary expected outcome of this study is that participation in the intervention will increase the use of fertility preservation. The secondary expected outcome is an improvement in decision quality. Chi-square analyses and t-tests will evaluate primary and secondary outcomes. The goal of this intervention is to optimize family-centered fertility preservation decision-making in the context of a new cancer diagnosis to help male adolescents and emerging adults achieve their future parenthood goals.
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Schellinger, Sandra Ellen, Eric Worden Anderson, Monica Schmitz Frazer, and Cindy Lynn Cain. "Patient Self-Defined Goals: Essentials of Person-Centered Care for Serious Illness." American Journal of Hospice and Palliative Medicine® 35, no. 1 (March 23, 2017): 159–65. http://dx.doi.org/10.1177/1049909117699600.
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This research, a descriptive qualitative analysis of self-defined serious illness goals, expands the knowledge of what goals are important beyond the physical—making existing disease-specific guidelines more holistic. Integration of goals of care discussions and documentation is standard for quality palliative care but not consistently executed into general and specialty practice. Over 14 months, lay health-care workers (care guides) provided monthly supportive visits for 160 patients with advanced heart failure, cancer, and dementia expected to die in 2 to 3 years. Care guides explored what was most important to patients and documented their self-defined goals on a medical record flow sheet. Using definitions of an expanded set of whole-person domains adapted from the National Consensus Project (NCP) Clinical Practice Guidelines for Quality Palliative Care, 999 goals and their associated plans were deductively coded and examined. Four themes were identified—medical, nonmedical, multiple, and global. Forty percent of goals were coded into the medical domain; 40% were coded to nonmedical domains—social (9%), ethical (7%), family (6%), financial/legal (5%), psychological (5%), housing (3%), legacy/bereavement (3%), spiritual (1%), and end-of-life care (1%). Sixteen percent of the goals were complex and reflected a mix of medical and nonmedical domains, “multiple” goals. The remaining goals (4%) were too global to attribute to an NCP domain. Self-defined serious illness goals express experiences beyond physical health and extend into all aspects of whole person. It is feasible to elicit and record serious illness goals. This approach to goals can support meaningful person-centered care, decision-making, and planning that accords with individual preferences of late life.
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Hoyt, Catherine R., Jianna D. Fernandez, Taniya E. Varughese, Emma Grandgeorge, Hannah E. Manis, Kelly E. O’Connor, Regina A. Abel, and Allison A. King. "The Infant Toddler Activity Card Sort: A Caregiver Report Measure of Children’s Occupational Engagement in Family Activities and Routines." OTJR: Occupation, Participation and Health 40, no. 1 (June 4, 2019): 36–41. http://dx.doi.org/10.1177/1539449219852030.
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Early intervention (EI) therapy services aim to address family-centered goals to facilitate young children’s development and participation in meaningful life activities. Current methods to evaluate children in EI assess discrete developmental skills but provide little information on the child’s ability to successfully incorporate that skill in everyday life. Furthermore, traditional measures have limited opportunity for parent report, despite parent engagement being a critical component for successful implementation of EI services. A measure that involves parents in the therapeutic process to track family-driven EI goals related to a child’s occupational engagement in meaningful family activities and routines is desperately needed. Using a qualitative design and conventional content analysis, we identified 41 distinct activities of infant–toddlers from a cohort of 23 caregivers. Activity items were matched with photographs and validated with experts in pediatric rehabilitation using the Delphi method. The resulting 40 activity/photograph pairs were used to develop a new measure of pediatric occupational engagement, the Infant Toddler Activity Card Sort (ITACS).
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Loscalzo, Matthew J. "Palliative Care and Psychosocial Contributions in the ICU." Hematology 2008, no. 1 (January 1, 2008): 481–90. http://dx.doi.org/10.1182/asheducation-2008.1.481.
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AbstractPsychosocial domains and palliative care medicine are the connective tissue of our fragmented health care system. The psychosocial domains of palliative care are central to creating new partnerships with physicians, patients, and their caregivers in emotionally charged medical environments, especially Intensive Care Units. Managing the psychological, social, emotional, spiritual, practical and existential reactions of patients and their loved ones supports effective action and problem-solving. Practical aspects to establishing realistic goals of care among the health care team and other specialists, communicating effectively with patients and families in crisis, using the diverse and ambiguous emotional responses of patients, families, faculty and staff therapeutically, and helping to create meaning in the experience is essential to whole-patient and family care centered. The family conference is an excellent vehicle to create an environment of honest and open communication focused on mobilizing the resources of the patient, family and health care team toward a mutually agreed upon plan of action resulting in clearly defined goals of care.
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Marterre, Buddy, Jaewook Shin, and William T. Hillman Terzian. "Shared Decision-Making in the Context of Uncertain Care Goals and Outcomes: Dissecting a Penetrating Abdominal Trauma Case Complicated by Enterocutaneous Fistulae." American Surgeon 86, no. 11 (November 2020): 1456–61. http://dx.doi.org/10.1177/0003134820960051.
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Surgeons care deeply about their patients, their patient’s surgical outcomes, and their fund of knowledge as it relates to disease, treatment options, and risk is remarkable. Unfortunately, surgical patients’ values, hopes, fears, and unacceptable levels of suffering are rarely elicited and addressed while constructing surgical treatment plans, even when the stakes are high. How can surgeons bring all their experience, education, and expertise to bear in a patient-centered manner amidst uncertainty? Surgeons typically emulate mentors who either employed a solely informative, facilitative, or directive/paternalistic approach to decision-making. These 3 styles fail to simultaneously address: (1) what matters most to patients and (2) the surgeon’s expertise. Since communication in each of these 3 approaches is unidirectional, and the decisional power locus is imbalanced, they are unshared, nonpartnering, and—perhaps surprisingly—not patient-centered. Patient-centered, collaborative shared decision-making (SDM) approaches align with palliative care principles and are rarely employed, taught, or modeled. Furthermore, nonpartnering approaches to surgical decision-making are often laden with unintended consequences, such as patient and family suffering and the suffering of surgeons. We present the high-risk case of an abdominal gunshot wound in a morbidly obese man, which was complicated by 3 enterocutaneous fistulae and a loss of abdominal wall integrity, where ongoing empathic, partnering SDM dialogue is enabling a patient-centered and value‐concordant care plan. The authors invite you to virtually journey with us as this case unfolds, as the impending surgical decisions are substantial and weighty. Uncertainty and risks appear at every turn—providing additional challenges to overcome.
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Lee-Miller, Cathy A., Renee Connor, Lynnette Acosta, and Cynthia Wetmore. "Initiation of family-centered bedside rounds at Phoenix Children's Hospital Center for Cancer and Blood Disorders." Journal of Clinical Oncology 36, no. 30_suppl (October 20, 2018): 170. http://dx.doi.org/10.1200/jco.2018.36.30_suppl.170.
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170 Background: There has been a national trend towards a family/patient-centered care model in an effort to achieve many goals: earlier discharges, enhanced collaboration and patient safety, and improved satisfaction among medical care teams, patients and families. While most of the services at Phoenix Children’s Hospital (PCH) utilized a family-centered rounding model, the hematology/oncology service used table rounds. In December 2017, the Center for Cancer and Blood Disorders (CCBD) initiated family-centered rounds (FCR) on the inpatient service. Methods: FCR participants include patient, parent(s), bedside nurse, clinical supervisor, residents, fellow, attending, nurse practitioners, pharmacist, dietitian and child life specialist. One unique aspect of our FCR model is using scheduled rounds, whereby each patient is allotted a specific length of time and each family is given a time range within which to expect the team. Patients are scheduled every 10 minutes and if more time is needed, the attending/fellow return later for discussion. Staying on a schedule allows for improved nursing workflow and for consulting teams and interpreters to join rounds for specific patients. Outcome measures include patient, family and employee satisfaction. Results: Patient satisfaction is measured using NRC Real-time electronic survey. Scores have increased from a baseline of 70% (Oct/Nov 2017) to 87.5% (April 2018) after the initiation of FCR. From a qualitative standpoint, families have expressed gratitude for the new rounding model. Staff have expressed increased satisfaction at the efficiency and thoroughness of communication on rounds and the multidisciplinary team allows for real-time collaboration. Conclusions: FCR have led to increases in patient satisfaction both quantitatively and qualitatively. Ongoing initiatives include adding family-centered night rounds and a more extensive evaluation of FCR’s impact on employee satisfaction, patient safety, length of stay and lower overall costs. We are continuously evaluating the structure and efficacy of FCR to achieve the best possible care for our patients.
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Bomba, Patricia A., and Daniel Vermilyea. "Integrating POLST into Palliative Care Guidelines: A Paradigm Shift in Advance Care Planning in Oncology." Journal of the National Comprehensive Cancer Network 4, no. 8 (September 2006): 819–29. http://dx.doi.org/10.6004/jnccn.2006.0069.
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Because predicting and outlining guidance for all possible scenarios is difficult, advance directives are rarely sufficiently precise to dictate patient preferences in specific situations as a disease progresses. Nonetheless, advance care planning is an essential process that should begin at the time of diagnosis, if not already initiated, to ensure that all patient and family rights are preserved. Communicating effectively with the patient and family and having the patient designate a surrogate decision-maker are critical. Attention must be paid to resolving conflicts among patient values and preferences and those of family and the health care team. Patient-centered goals for care and expectations should be elicited at first assessment and reassessed frequently as conditions change. As a disease progresses, advance directives are rarely precise enough to predict all possible scenarios and outline guidance for care. Therefore, for patients with advanced metastatic cancer and a potential life expectancy of less than 1 year, converting patient-centered treatment goals into actionable medical orders while the patient maintains capacity is a more effective way to ensure that patient preferences are honored. Physician Orders for Life-Sustaining Treatment (POLST) and similar medical order forms provide explicit direction about resuscitation status (“code status”) if the patient is pulseless and apneic. POLST also includes directions about additional interventions the patient may or may not want. A decade of research in Oregon has proved that the POLST Paradigm Program more accurately conveys end-of-life preferences that are more likely to be followed by medical professionals than traditional advance directives alone.
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Mitchell, Ronald K., Bradley R. Agle, James J. Chrisman, and Laura J. Spence. "Toward a Theory of Stakeholder Salience in Family Firms." Business Ethics Quarterly 21, no. 2 (April 2011): 235–55. http://dx.doi.org/10.5840/beq201121215.
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ABSTRACT:The notion of stakeholder salience based on attributes (e.g., power, legitimacy, urgency) is applied in the family business setting. We argue that where principal institutions intersect (i.e., family and business); managerial perceptions of stakeholder salience will be different and more complex than where institutions are based on a single dominant logic. We propose that (1) whereas utilitarian power is more likely in the general business case, normative power is more typical in family business stakeholder salience; (2) whereas in a general business context legitimacy is socially constructed; for family stakeholders, legitimacy is based on heredity; and (3) whereas temporality and criticality are somewhat independent in general-business urgency, they are linked in the family business case because of family ties and family-centered non-economic goals. We apply this theoretical framework to position and integrate the contributions to this special section of Business Ethics Quarterly on “Stakeholder Theory, Ethics, Corporate Social Responsibility, and Family Enterprise.”
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de Nonneville, Alexandre, Anthony Marin, Theo Chabal, Veronique Tuzzolino, Marie Fichaux, and Sebastien Salas. "End-of-Life Practices in France under the Claeys-Leonetti Law: Report of Three Cases in the Oncology Unit." Case Reports in Oncology 9, no. 3 (October 20, 2016): 650–54. http://dx.doi.org/10.1159/000450940.
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On February 2, 2016, the French government enacted the Claeys-Leonetti law introducing the right to deep and continuous sedation and forbade euthanasia for end-of-life patients. This article reports the first descriptions of this kind of intervention at the final stage of life of 3 patients and highlights the need of patient-centered goals and the importance of close collaboration between the patient, family, and medical and paramedical team to achieve a higher quality of final palliative care.
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Bailey, Donald B., R. A. McWilliam, Lynette Aytch Darkes, Kathy Hebbeler, Rune J. Simeonsson, Donna Spiker, and Mary Wagner. "Family Outcomes in Early Intervention: A Framework for Program Evaluation and Efficacy Research." Exceptional Children 64, no. 3 (April 1998): 313–28. http://dx.doi.org/10.1177/001440299806400302.
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Much of the focus on the relationship between parents and professionals in early intervention has been on the rationale for working with families and the processes by which that rationale should be implemented. Although some discussion has occurred regarding desired outcomes, approaches and strategies by which the attainment of family outcomes could be documented have not been widely discussed or agreed upon by the field. In this article we suggest eight questions that could serve as a framework for determining the extent to which early intervention has accomplished the goals inherent in a family-centered approach. Conceptual issues and methodological considerations associated with documenting these outcomes are presented, and recommendations regarding implementation and future directions are made.
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Strober, Elizabeth. "“Is Power-sharing Possible?” Using Empowerment Evaluation with Parents and Nurses in a Pediatric Hospital Transplantation Setting." Human Organization 64, no. 2 (May 26, 2005): 201–10. http://dx.doi.org/10.17730/humo.64.2.uh6u2exgheyxhxqj.
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This article describes the evaluation of an innovative empowerment project aimed at improving nurse-family communication in a pediatric transplantation setting. Empowerment and family-centered care models were employed to reduce barriers to communication and build partnerships. The goals of the project were to facilitate empowerment, power-sharing, and joint decision-making among nurses and families. Families gained insight into biomedical culture, culminating in the creation of a handbook for navigating biomedical culture, which they site as empowering. However, major barriers exist to achieving the remaining goals. Although nurses involved with the project value the principles of joint decision-making and power-sharing abstractly, they are reluctant to incorporate them into their practice. They describe them as at odds with tasks and roles they must accomplish. Foucault’s insights on clinical power assist in understanding why this project was successful in creating partnerships in some areas, but not accomplishing power-sharing at a structural and practical level.
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Tribett, Erika Lauren, Jordan Chavez, and Alison Morris. "Utilizing design theory to create a patient-centered palliative care model in cancer survisorship care." Journal of Clinical Oncology 34, no. 3_suppl (January 20, 2016): 164. http://dx.doi.org/10.1200/jco.2016.34.3_suppl.164.
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164 Background: Palliative medicine (PM) is an essential component of survivorship care from point of diagnosis. While PM is philosophically committed to supporting patient and family survivorship goals, very few programs incorporate patient and family input into the formation of a patient-centered model of care for symptom management and quality of life. We utilized design theory to develop novel interventions for primary and specialist PM delivery. Methods: Baseline data collected in Fall 2014 revealed a need for assistance navigating support services as well as barriers to PM integration including branding, lack of primary palliative skills, and poor understanding of outcomes of PM integration. In February 2015, we convened a multidisciplinary group of 25 patients, family members, oncology clinicians and experts in patient experience and health services research, to evaluate current state data and formulate ideas for optimizing PM to support symptom management and quality of life. During a 1-day workshop, the group generated interventions for primary and specialist PM. Small teams were assigned to pilot projects based on these recommendations. Proposed solutions are being tested from July - October 2015. Results: The design team generated five focus areas for meeting patient needs and overcoming barriers: standard processes for access to PM, education on primary PM, rapid reporting of outcomes, relationship-building with referring clinicians, and improved access to primary and specialist palliative resources. Three interventions are being developed to address these: 1. A subspecialist “hub” that allows single referrals and streamlined access to supportive care, 2. a novel two-question probe about goals conducted by the oncologist, and 3. a peer support system between PM social work and nursing staff to proactively manage patients with complex needs. Conclusions: Patient and family-centered PM mandates a novel approach. Design theory allows for clear delineation of problem areas, generation of multiple solution sets, and rapid testing and refinement prior to large-scale adoption. A participatory design approach emphasizes user values and limitations and creates values-based solutions.
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Haley, Katarina L., and Thomas Wangerman. "Using Family Members or Close Friends as Informants About Participation Goals for Older Adults With and Without Aphasia." Perspectives on Neurophysiology and Neurogenic Speech and Language Disorders 22, no. 1 (April 2012): 12–17. http://dx.doi.org/10.1044/nnsld22.1.12.
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Client-centered care is a stated focus for many rehabilitation programs, but personalized goal-setting presents unique challenges for people with aphasia (PWA). A potential solution for clinicians is to enlist the help of family members or close friends to determine what life activities should be addressed. In this article, we review two main reasons this solution is not ideal. First, we discuss how negative effects on autonomy and motivation may be instigated unintentionally. Next, we consider to what extent accurate input can be assumed by proxy responders. We conclude by reporting the results of a small study showing that congruence about activity choices among family members or friends not affected by aphasia is similar to previously reported congruence in families with a history of aphasia. These results suggest that ability to predict life activity preferences in others is limited, regardless of the presence of aphasia. We contend that although the input and participation of significant others is often critical to positive rehabilitation outcomes, the value of this input lies in its relationship to the priorities identified by the individual with aphasia, not in the potential for replacing it.
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Gerber, Pamela S. "Last Watch: Developing an Inpatient Palliative Volunteer Program for U.S. Veterans in Hospice." OMEGA - Journal of Death and Dying 67, no. 1-2 (August 2013): 87–95. http://dx.doi.org/10.2190/om.67.1-2.j.
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This project offers encouraging evidence of the impact of providing companionship and compassionate care to actively dying Veterans. Veteran-centered care serves as a guide for volunteer program objectives including goals based on measuring outcomes of volunteer visits offered to Veterans, frequency of visits to those desiring volunteer involvement and documentation of goals on the resident plan of care. Forty-eight Veterans were admitted to the Palliative Integrated Care (PIC) Unit during the project review period with a median length of stay (LOS) of 7 days, ranging 1–50 days. Goals were met for Veterans with LOS > 3 days; however, it was more challenging to meet the needs of Veterans with shorter stays. Data for this project were collected over a 6-month period. The U.S. Department of Veterans Affairs (VA) is responding to the needs of end-of-life Veterans who do not have family or friends readily available through the No Veteran Dies Alone initiative.
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Aultman, Julie, Diana Kingsbury, Kristin Baughman, Rebecca Fischbein, and John M. Boltri. "Reimagining proactive strategic planning toward patient-centered care: processes and outcomes in a medical school's department of family and community medicine." International Journal of Health Governance 25, no. 3 (May 26, 2020): 223–33. http://dx.doi.org/10.1108/ijhg-03-2020-0017.
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PurposeA detailed strategic planning process is presented that entails several beneficial and effective strategies and goals for interdisciplinary academic, clinical and/or service departments. This strategic planning process emerged due to the need to adapt to organizational and structural changes within an institution of higher medical education.Design/methodology/approachA strategic planning framework was developed, along with an inclusive process that used an appreciative inquiry methodology, to examine past and present strengths and potentials in a diverse, interdisciplinary family and community medicine department.FindingsThe success of this strategic plan and relevant approaches is evidenced by the development of a community medicine course, student-run free clinic to meet the needs of underserved patients, an increase in primary care research and increase in student choice of family medicine as specialty choice.Research limitations/implicationsThe described strategic planning process serves as an illustration of the benefits and limitations of identified approaches and outcomes useful for other departments and organizations undertaking similar efforts.Originality/valueThe integration of multiple goals and a shared vision in a strategic planning process leads to successful program development and meeting the needs of future healthcare professionals and the patients and communities they serve. The authors have provided a model for such success.
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Hidayah, Nurul, Nissa Tarnoto, and Ega Asnatasia Maharani. "Profil Kebutuhan Pengasuhan Anak pada Pasangan Muda." Jurnal Ilmu Perilaku 2, no. 2 (January 5, 2019): 89. http://dx.doi.org/10.25077/jip.2.2.89-106.2018.
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Nowadays, there are many married couples in Indonesia who have not unable to nurture their children effectively. This study aims at developing curriculum on child nurturing for young couples to optimize their children’s growth. The implementation of the research will be done in multiyear. In the first year, the focus will be on the needs assessment on young couples related to some important issues. The subjects of the research will be 132 parents aged up to 30 years old who have been married for up to 5 years. The place of the research will be in four districts in DIY with focus group discussion (FGD) method as the main instrument. The FGD will be applied with Rapid Rural Appraisal (RRA) method. Data analysis using thematic analysis. The results showed that the profile of the young couple's needs on parenting consisted of five aspects: (1) the nurturing dimension consisting of physical, cognitive, and affective dimensions; (2) self-centered, child-centered, and parent-child parenting goals; (3) forms of care in the form of demand, control, response, and acceptance; (4) framework which includes nuclear family and extended family; and (5) how to overcome both internal and external parenting barriers.
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Wheeler, John J. "The role of social validity in the design, delivery and evaluation of person-centered interventions and supports." Men Disability Society 46, no. 4 (December 31, 2019): 5–12. http://dx.doi.org/10.5604/01.3001.0013.7566.
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The construct of social validity was introduced by Montrose M. Wolf (1978) and was de¬fined by three distinct components. These components included (a) the social significance of the goals of treatment, (b) the social appropriateness of the treatment procedures and (c) the social importance of the effects of treatment. The value of social validity in the design, delivery and evaluation of person-centered treatments has been supported over time within the literature. Most notably, Ilene S. Schwartz and Donald M. Baer (1991) spoke to the importance of social validity in terms of designing interventions that were both relevant and valued by consumers. The field of special education has witnessed a significant growth over the past thirty-years in the use of a person-first framework. The merits of social validity for promoting person-first interventions and supports are substantial and include the potential for greater consumer and family engage¬ment, increased adherence to treatment and greater degrees of treatment satisfaction by all parties including teachers, therapists, family members and consumers. Perhaps the greatest benefit is that social validity inputs promote the design and delivery of socially significant interventions and supports and potential quality of life outcomes for consumers in a manner, which honors the intentions of person-centered professional practice. The purpose of this paper will be to provide a research-based rationale for the use of social validity in the design, delivery and evaluation of person-centered interventions and supports.
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Saunders, Roger P., Marie R. Abraham, Mary Jo Crosby, Karen Thomas, and William H. Edwards. "Evaluation and Development of Potentially Better Practices for Improving Family-Centered Care in Neonatal Intensive Care Units." Pediatrics 111, Supplement_E1 (April 1, 2003): e437-e449. http://dx.doi.org/10.1542/peds.111.se1.e437.
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Objective. Technological and scientific advances have progressively decreased neonatal morbidity and mortality. Less attention has been given to meeting the psychosocial needs of the infant and family than on meeting the infant’s physical needs. Parents’ participation in making decisions and caring for their child has often been limited. Environments designed for efficient technological care may not be optimal for nurturing the growth and development of sick neonates or their families. Eleven centers collaborating on quality improvement tried to make the care of families better by focusing on understanding and improving family-centered care. Methods. Through internal process analysis, review of the evidence, collaborative learning, and benchmarking site visits to centers of excellence in family-centered care, a list of potentially better practices was developed. Choice of which practices to implement and methods of implementation were center specific. Improvement goals were in 3 areas: parent-reported outcomes, staff beliefs and practices, and clinical outcomes in length of stay and feeding practices. Measurement tools for the first 2 areas were developed and pilots were conducted. Results. Length of stay and feeding outcomes were not different before the collaboration (1998) and at the formal end of the collaboration (2000). Conclusions. Prospective parent-reported outcomes are being collected, and the staff beliefs and practices questionnaire will be repeated in all centers to determine the impact of the project in those areas.