Статті в журналах з теми "Nursing ethics outh Australia"

Objective Health practitioners’ Codes of Conduct and Codes of Ethics articulate practice standards across multiple domains, including the domain of cultural safety. As key tools driving individual practice and systems reform, Codes are integral to improving health outcomes for Aboriginal and Torres Strait Islander peoples. It is, therefore, critical that their contents specify meaningful cultural safety standards as the norm for institutional and individual practice. This research assessed all Codes for cultural safety specific content. MethodsFollowing the release of the Australian Health Practitioner Regulation Agency’s (Ahpra) Health and Cultural Safety strategy 2020–25, the 16 Ahpra registered health practitioner Board Codes of Conduct and professional Codes of Ethics were analysed by comparing content to Ahpra’s new cultural safety objectives. Two Codes of Conduct, Nursing and Midwifery, met these objectives. The Aboriginal and Torres Strait Islander Health Practitioners Code partially met these objectives. ResultsMost Codes of Conduct (14 of 16) conflated Aboriginal and Torres Strait Islander peoples with culturally and linguistically diverse (CALD) communities undermining the sovereignty of Australia’s First Peoples. Eleven professions had a Code of Ethics, including the Physiotherapy Code of Conduct, which outlined the values and ethical principles of practice commonly associated with a Code of Ethics. Of the 11 professions with a Code of Ethics, two (Pharmacy and Psychology) articulated specific ethical responsibilities to First Peoples. Physiotherapy separately outlined cultural safety obligations through their reconciliation action plan (RAP), meeting all Ahpra cultural safety objectives. The remaining eight advocated respect of culture generally rather than respect for Aboriginal and Torres Strait Islander cultures specifically. ConclusionsThe review identified multiple areas to improve the codes for cultural safety content for registered health professions, providing a roadmap for action to strengthen individual and systems practice while setting a clear regulatory standard to ensure culturally safe practice becomes the new norm. It recommends the systematic updating of all professional health practitioner Board Codes of Conduct and professional Codes of Ethics based on the objectives outlined in Ahpra’s Cultural Safety Strategy. What is known about the topic?Systemic racism and culturally unsafe work environments contribute to poor health outcomes for Aboriginal and Torres Strait Islander peoples. They also contribute to the under-representation of Aboriginal and Torres Strait Islander peoples in the health workforce, denying the system, and the people who use and work in it, much needed Indigenous knowledge. Creating a culturally safe healthcare system requires all health practitioners to reflect on their own cultural background, to gain appreciation of the positive and negative impacts of individually held cultural assumptions on the delivery of healthcare services. Competence in cultural safety as a required standard of practice is therefore essential if broad, sustainable and systemic cultural change across the health professions and ultimately across Australia’s healthcare system is to be achieved. Given that Codes of Conduct and Codes of Ethics are integral in setting the practical and moral standards of the professions, their contents with respect to cultural competence are of great importance. What does this paper add?A review of this type has not been undertaken previously. Following the establishment of the Ahpra Aboriginal and Torres Strait Islander Health Strategy Group, release of Ahpra’s 2018 Statement of intent, and the 2019 Aboriginal and Torres Strait Islander Health and Cultural Safety strategic plan and Reconciliation Action Plan, we analysed the content of each of the 16 registered health professions Codes of Conduct and Code of Ethics looking for content and guidance in accordance with the new national cultural safety definition. Several opportunities to improve the Codes of Conduct and Codes of Ethics were identified to realise the vision set out in the statement of intent including through the application of the National Law. This analysis provides a baseline for future improvements and confirms that although some current health practitioner Codes of Conduct and Codes of Ethics have begun the journey of recognising the importance of cultural safety in ensuring good health outcomes for Australia’s Indigenous peoples, there is broad scope for change. What are the implications for practitioners?The gaps identified in this analysis provide a roadmap for improvement and inclusion of Aboriginal and Torres Strait Islander Health and cultural safety as a required standard in Codes of Conduct and Codes of Ethics for all registered health practitioners. Although it is recognised that Codes alone may not change hearts and minds, codifying the clinical competency of cultural safety provides a portal, and a requirement, for each individual practitioner to engage meaningfully and take responsibility to improve practice individually and organisationally.

Purpose The purpose of this paper is to review existing research on whistleblowing in healthcare in order to develop an evidence base for policy and research. Design/methodology/approach A narrative review, based on systematic literature protocols developed within the management field. Findings The authors identify valuable insights on the factors that influence healthcare whistleblowing, and how organizations respond, but also substantial gaps in the coverage of the literature, which is overly focused on nursing, has been largely carried out in the UK and Australia, and concentrates on the earlier stages of the whistleblowing process. Research limitations/implications The review identifies gaps in the literature on whistleblowing in healthcare, but also draws attention to an unhelpful lack of connection with the much larger mainstream literature on whistleblowing. Practical implications Despite the limitations to the existing literature important implications for practice can be identified, including enhancing employees’ sense of security and providing ethics training. Originality/value This paper provides a platform for future research on whistleblowing in healthcare, at a time when policymakers are increasingly aware of its role in ensuring patient safety and care quality.

Background/Objective: Multidisciplinary learning within the framework of undergraduate education has recently been recognised as essential in developing an integrated and resilient healthcare system for the future. This inquiry seeks to derive common learning outcomes for a new multidisciplinary foundation research methods unit for undergraduate health sciences students. Methods: An outcomes-based design was used to determine the learning outcomes from first principles. All academics across multiple health disciplines at a regional university in Australia were invited to a series of meetings to brainstorm a set of common graduate capabilities and the scaffolds required to achieve them. Meetings were carefully documented and agreed to by consensus after member checking. A thematic analysis was undertaken to identify emergent themes. The capabilities themes were checked for alignment with the institutional graduate attributes and the thresholds of learning outcomes (TLOs) set out by the Australian Government Office of Learning and Teaching.Results: Three broad theoretical constructs emerged from the thematic analysis for the graduate capabilities: (i) health practitioners as evidence consumers (i.e. knowledge translation); (ii) health practitioners as evidence producers, (i.e. knowledge creation) and; (iii) ethical practice.Conclusions: This study derived a set of learning outcomes from first principles, while applying an outcomes-based curriculum design methodology. This may be a useful approach for finding common learning outcomes within a multidisciplinary health educational framework. Such structures and processes may not only help to provide students with a solid foundation for learning content that they have in common with other disciplines, but may also to facilitate interprofessional communication in future practice.

The nursing profession is presented with numerous definitions of workplace bullying. This study provides an in-depth analysis of the concept of bullying in the nursing profession in Australia through a scoping review of definitions presented in literature published up until 2018. The research questions used to guide the search were as follows: How has the definition of bullying in nursing in Australia been conceptualized in the literature? How do these definitions of bullying differ? How has the definition of bullying, as used in the literature, evolved over time? The review was informed by the approach of Arksey and O’Malley, containing explicit definitions of bullying in nursing literature. The findings reveal that the literature does not reflect a shared and integrated vision of the exact nature of bullying in the nursing profession. The conceptualization of bullying in the nursing profession has become more dynamic over time. The myriad ways in which bullying in nursing is defined in Australia has important implications for research, practice, education, and policy.

Background: Choice to live and die at home is supported by palliative care policy; however, health resources and access disparity impact on this choice in rural Australia. Rural end-of-life home care is provided by district nurses, but little is known about their role in advocacy for choice in care. Objectives: The study was conducted to review the scope of the empirical literature available to answer the research question: What circumstances influence district nurse advocacy for rural client choice to live and die at home?, and identify gaps in the knowledge. Method: Interpretive scoping methodology was used to search online databases, identify suitable studies and select, chart, analyse and describe the findings. Results: 34 international studies revealed themes of ‘the nursing relationship’, ‘environment’, ‘communication’, ‘support’ and ‘the holistic client centred district nursing role. Discussion: Under-resourcing, medicalisation and emotional relational burden could affect advocacy in rural areas. Conclusion: It is not known how district nurses overcome these circumstances to advocate for choice in end-of-life care. Research designed to increase understanding of how rural district nurses advocate successfully for client goals will enable improvements to be made in the quality of end-of-life care offered.

Organ availability for transplantation has become an increasingly complex and difficult question in health economics and ethical practice. Advances in technology have seen prolonged life expectancy, and the global push for organs creates an ever-expanding gap between supply and demand, and a significant cost in bridging that gap. This article will examine the ethical implications for the nursing profession in regard to the procurement of organs from an impoverished seller’s market, also known as ‘Transplant Tourism’. This ethical dilemma concerns itself with resource allocation, informed consent and the concepts of egalitarianism and libertarianism. Transplant Tourism is an unacceptable trespass against human dignity and rights from both a nursing and collective viewpoint. Currently, the Australian Nursing and Midwifery Council, the Royal college of Nursing Australia, The Royal College of Nursing (UK) and the American Nurses Association do not have position statements on transplant tourism, and this diminishes us as a force for change. It diminishes our role as advocates for the most marginalised in our world to have access to care and to choice and excludes us from a very contemporary real debate about the mismatch of organ demand and supply in our own communities. As a profession, we must have a voice in health policy and human rights, and according to our Code of Ethics in Australia and around the world, act to promote and protect the fundamental human right to healthcare and dignity.

IntroductionThe Australian Council on Healthcare Standards (ACHS) set criteria for the delivery of healthcare services in Australia. While a voluntary process, continual accreditation with ACHS is an expectation of, and for, Australian healthcare providers. Juxtapositioned with the ACHS, the Nursing and Midwifery Board of Australia (NMBA) set the mandatory practice requirements of, and for, Australian nurses. Despite these overarching quality and governance directives, a regional Queensland Hospital and Health Service (HHS) demonstrated deficits in the quality of nursing care. Accordingly, a HHS project was commissioned with the aim of producing a quantum shift in the quality of nursing services such that the service wasready-everydayfor accreditation assessment, and nursing practice exemplified the NMBA standards.Several barriers to achieving the aim were identified and it was considered that the implementation of critical system changes would structurally and operationally support the achievement of the aim. The system changes are pivoted around an interactive matrix that links nursing care services to the array of nursing professional and practice standards and provides real-time quantitative output measures. This paper outlines the protocol that will be used to establish, implement and evaluate the matrix.Methods and analysisA participatory action research design with a modified Delphi methodology will be used for the development the matrix. The organisational change management around the matrix implementation will be informed by Kotter’s model and supported by the use of the McKinsey 7S. The matrix implementation phase will be conducted using a modifiedPromoting Action on Research Implementation in Health Servicesmodel. Quantitative and qualitative data will be collected over a 12 month pre-test/post-test design to measure the statistical significance of the matrix in supporting compliance with nursing standards and the achievement of quality nursing care. Quantitative data from quality of care assessments will be analysed using descriptive and comparative statistics. Qualitative data from staff surveys will be analysed by content analysis of the major themes (n~200).Ethics and disseminationThe project has ethics approval from a Queensland Health Human Research Ethics Committee. Results will be reported to participants and other stakeholders at seminars and conferences and through peer-reviewed publications.

Obtaining ethics approval from university ethics committees is an important part of the research process in Australia and internationally. However, for researchers engaging in ethnographic work, obtaining ethics approval can (re)present significant hurdles to overcome in planning and facilitating a research project. In this article, we discuss potential challenges of reconciling the differences between institutional ethical review standards and the reality of ethnographic research. To do so, we reflect on our own experiences seeking ethics approval for a study on racialized visibility in rural nursing and another on the experiences of gender and sexuality diverse older women. We focus on two particular queries from ethics committees that reaffirm, for us, the incompatibility of biomedically informed ethics guidelines for naturalistic, ethnographic research. The article draws on four major points of contention regarding ethical approval processes designed for biomedical research and applied to social research. With respect to social research, these are (a) the associated risks, (b) predictive informed consent, (c) the power held by social researchers, and (d) biomedical emphasis on distance and universalism within the research relationship. This article suggests a reformulation of ethics guidelines and structures such that ethics committees are better able to engage with ethnographic (and other social) research. Although these debates and structural changes may not be relevant for all social or ethnographic research, exploring these ethical difficulties is paramount to redefining expectations and the positivist standards upon which social research is often measured.

Objective To investigate the range, frequency and management of ethical issues encountered by clinicians working in hospitals in New South Wales (NSW), Australia. Methods A cross-sectional survey was conducted of a convenience sample of 104 medical, nursing and allied health professionals in two NSW hospitals. Results Some respondents did not provide data for some questions, therefore the denominator is less than 105 for some items. Sixty-two (62/104; 60%) respondents reported occasionally to often having ethical concerns. Forty-six (46/105; 44%) reported often to occasionally having legal concerns. The three most common responses to concerns were: talking to colleagues (96/105; 91%); raising the issue in a group forum (68/105; 65%); and consulting a relevant guideline (64/105; 61%). Most respondents were highly (65/99; 66%) or moderately (33/99; 33%) satisfied with the ethical environment of the hospital. Twenty-two (22/98; 22%) were highly satisfied with the ethical environment of their department and 74 (74/98; 76%) were moderately satisfied. Most (72/105; 69%) respondents indicated that additional support in dealing with ethical issues would be helpful. Conclusion Clinicians reported frequently experiencing ethical and legal uncertainty and concern. They usually managed this by talking with colleagues. Although this approach was considered adequate, and the ethics of their hospital was reported to be satisfactory, most respondents indicated that additional assistance with ethical and legal concerns would be helpful. Clinical ethics support should be a priority of public hospitals in NSW and elsewhere in Australia. What is known about the topic? Clinicians working in hospitals in the US, Canada and UK have access to ethics expertise to help them manage ethical issues that arise in patient care. How Australian clinicians currently manage the ethical issues they face has not been investigated. What does this paper add? This paper describes the types of ethical issues faced by Australian clinicians, how they manage these issues and whether they think ethics support would be helpful. What are the implications for practitioners? Clinicians frequently encounter ethically and legally difficult decisions and want additional ethics support. Helping clinicians to provide ethically sound patient care should be a priority of public hospitals in NSW and elsewhere in Australia.

A number of resources exist to assist registered nurses in Australia to determine their scope of practice; however, the ability of a professional nurse to expand his or her practice is highly context dependent. This article reports on barriers and enablers to expanding scope of practice, as identified by registered nurses across Australia. A cross-sectional survey administered online in 2016 returned 1,205 useable submissions. Results indicated that nurses wishing to expand their practice felt supported to do so by nursing colleagues and were aware of professional and regulatory documents relating to expanding scope of practice. Less support for this process was evident from other health professionals or employers. Respondents also indicated that they were motivated to expand their scope by professional satisfaction, potential for career advancement, and the desire to meet health service user's needs. The majority of respondents identified barriers to expanding scope of practice, including lack of remuneration and the absence of supportive guidelines. Respondents in the early stage of their careers were more likely to perceive organizational support for expanding their scope of practice. When required to expand their role, the majority of respondents indicated that they had undertaken additional training or accessed various resources to guide them in this process. Barriers to expanding nursing scope of practice can result in underutilization of the one of the greatest resources in the health care system. This article identifies a number of strategies that can facilitate role expansion to ensure that nursing continues to make a significant contribution to positive health service outcomes in Australia.

BackgroundMedical emergencies in care homes, both residential and nursing care homes, are common and costly, often resulting in calls to an out-of-hours general practitioner (GP) or Emergency Medical Services (EMS). Ambulance attendance frequently results in conveyance to hospital and the concomitant high costs and risks of, often prolonged, hospitalisation. Previous reviews have focussed on various stakeholder perceptions of transfer to hospital. The aim of this systematic review was to provide a comprehensive synthesis of the perceptions and experiences of care home residents and their family members, who have experienced medical emergencies in a care home setting.MethodsWe searched five electronic databases, supplemented with internet searches and forward and backward citation tracking from the included studies and review articles. Data were synthesised thematically following the Thomas and Harden approach. The CASP Qualitative Checklist was used to assess the quality of the included studies of this review.ResultsThe search strategy identified 6,140 citations. After removing duplicates and excluding citations based on title and abstract, and full-text screening, ten studies from four countries (Australia, Canada, UK, and US) were included in the review and meta-synthesis. All included studies were considered of acceptable quality. Through an iterative approach, we developed six analytical themes. 1. Infrastructure and process requirements in care homes to prevent and address emergencies; 2. The decision to transfer to hospital – a perfect storm; 3. Challenges of transfer and hospitalisation for older patients; 4. Good communication vital for desirable outcomes; 5. Legal, regulatory and ethical concerns; and 6. Trusting relationships enabled residents to feel safe.ConclusionsThe emergency care experience for care home residents can be enhanced by ensuring resources, staff capacity and processes for high quality care. Building trusting relationships underpinned by good communication and attention to ethical practice were also identified as important factors.

This article examines the research implications and uses of data for a large project investigating institutional confinement in Australia and New Zealand. The cases of patients admitted between 1864 and 1910 at four separate institutions, three public and one private, provided more than 4000 patient records to a collaborative team of researchers. The utility and longevity of this data and the ways to continue to understand its significance and contents form the basis of this article’s interrogation of data collection and methodological issues surrounding the history of psychiatry and mental health. It examines the themes of ethics and access, record linkage, categories of data analysis, comparison and record keeping across colonial and imperial institutions, and constraints and opportunities in the data itself. The aim of this article is to continue an ongoing conversation among historians of mental health about the role and value of data collection for mental health and to signal the relevance of international multi-sited collaborative research in this field.

IN NOVEMBER 2002, in what stands as one of the most significant whistle blowing cases in the history of the Australian health care system, four nurses went public with concerns they had about the management of clinical incidents and patient safety at two hospitals in Sydney, New South Wales. The handling of this case and its aftermath raises important moral questions concerning the nature of whistleblowing in health care domains and the possible implications for the patient safety and quality of care movement in Australia. This paper presents an overview of the case, the moral risks associated with whistleblowing, and some lessons learned. The International Council of Nurses (2000) Code of Ethics stipulates that nurses have a stringent responsibility to 'take appropriate action to safeguard individuals when their care is endangered by a co-worker or any other person'. Other local and international nursing codes of ethics and standards of professional conduct likewise obligate nurses to take appropriate action to safeguard individuals when placed at risk by the incompetent, unethical or illegal acts of others ? including the system. Despite these coded moral prescriptions for responsible and accountable professional conduct, taking appropriate action when others are placed at risk (including making reports to appropriate authorities) is never an easy task nor is it free of risk for nurses. As has been amply demonstrated in the literature, taking a moral stance to protect patient safety and quality of care can be extremely hazardous to nurses (Johnstone 1994, 2002, 2004; Ahern & McDonald 2002). In situations where nurses report their concerns to an appropriate authority but nothing is done to either investigate or validate their claims, nurses are faced with the ethical dilemma and 'choice' of whether to: do nothing ('put up and shut up'); leave their current place of employment (and possibly even the profession); or take the matter further ('blow the whistle') by reporting their concerns to an external authority that they perceive as having the power to do something about their concerns. It is rare for nurses to 'blow the whistle' in the public domain. When they do, it is usually because they perceive that something is terribly wrong and, as a matter of conscience, they cannot just look on as morally passive bystanders. For those nurses who do take a stand, the costs to them personally and professionally are almost always devastating, with no guarantees that the situation on which they have taken a public stance will be improved. Nurses who blow the whistle often end up with their careers and lives in tatters (see case studies in Johnstone 1994 & 2004).

IntroductionSars-CoV-2 is a novel coronavirus responsible for COVID-19 officially declared pandemic in March 2020. Health systems worldwide responded with swift changes to increase workflow capacity while protecting the vulnerable, including those with cancer. This led to unprecedented and rapid restructuring of health service provision. Published data from the 2003 SARS pandemic focuses on medical and nursing staff, overlooking other departmental employees such as administration officers or food service workers. Our protocol aims to document directives and adjustments communicated to staff in two cancer care departments and correlate this with measures of distress and perceived preparedness across the spectrum of all staff involved in cancer care.Methods and analysisWe use a semiqualitative approach comprising weekly diarising of events and simultaneous staff surveys. Principal investigators will document changes at a metropolitan quaternary cancer centre and a regional cancer centre. Communications, directives and changes will be diarised in real time in four executional domains. Simultaneously, prospective voluntary self-administered online surveys will be conducted at regular intervals by staff. The survey assesses the perceived institutional preparedness and personal well-being, with a combination of Likert scaled and open response questions. A semiquantitative self-assessment of distress adapted from National Comprehensive Cancer Network distress thermometer is incorporated. Additionally, open-text personal reflections on themes including difficult decisions will be invited. Survey participants will be drawn from various work areas of the cancer care departments: administrative staff, health professionals, for example, allied health, ancillary workers, nursing and medical.Ethics and disseminationThe study has been reviewed and approved by the Human Research Ethics Committee (LNR/2020/QRBW/62982). Published literature on domains of distress neglects categories of healthcare worker who form an essential part of the care delivery team. Our study hopes to gather insights about psychosocial impact and adjustment which could direct responses in future emergencies.

Increasing demands for health care globally often lead to discussions about expanding the involvement of nurses in a range of nontraditional roles. Several countries have introduced nurse endoscopists as a means of easing the burden of demand for a range of endoscopic procedures. A shortage of medical staff in Australia combined with increasing demand for endoscopy led to the implementation of nurse endoscopists as a pilot program in the state of Queensland, where a nurse practitioner model was implemented, and Victoria, where an advanced practice model was used. This article will discuss the implementation of and responses from the nursing, medical, and policy community to nurse-performed endoscopy in this country. Regarding health policy, access to cancer screening may be improved by providing nurses with advanced training to safely perform endoscopy procedures. Moreover, issues of nurse credentialing and payment need to be considered appropriate to each country’s health system model.

IntroductionGeneral practice in Australia, as in many countries, faces challenges in the areas of workforce capacity and workforce distribution. General practice vocational training in Australia not only addresses the training of competent independent general practitioners (GPs) but also addresses these workforce issues. This study aims to establish the prevalence and associations of early career (within 2 years of completion of vocational training) GPs’ practice characteristics; and also to establish their perceptions of utility of their training in preparing them for independent practice.Methods and analysisThis will be a cross-sectional questionnaire study. Participants will be former registrars (‘alumni’) of three regional training organisations (RTOs) who achieved general practice Fellowship (qualifying them for independent practice) between January 2016 and July 2018 inclusive. The questionnaire data will be linked to data collected as part of the participants’ educational programme with the RTOs. Outcomes will include alumni rurality of practice; socioeconomic status of practice; retention within their RTO’s geographic footprint; workload; provision of nursing home care, after-hours care and home visits; and involvement in general practice teaching and supervision. Associations of these outcomes will be established with logistic regression. The utility of RTO-provided training versus in-practice training in preparing the early career GP for unsupervised post-Ffellowship practice in particular aspects of practice will be assessed with χ2tests.Ethics and disseminationEthics approval is by the University of Newcastle Human Research Ethics Committee, approval numbers H-2018-0333 and H-2009-0323. The findings of this study will be widely disseminated via conference presentations and publication in peer-reviewed journals, educational practice translational workshops and the GP Synergy Research subwebsite.

IntroductionResidential aged care facilities (RACFs) are under increasing pressure to provide high-quality, round the clock care to consumers. However, they are often understaffed and without adequate skill mix and resources. As a result, staff must prioritise care by level of importance, potentially leading to care that is missed, delayed or omitted. To date, the literature on prioritisation and missed care has been dominated by studies involving nursing staff, thereby failing to take into account the complex networks of diverse stakeholders that RACFs comprise. This study aims to investigate the priorities of residents, family members and care staff in order to make comparisons between how care is prioritised in RACFs by the different stakeholder groups.Methods and analysisThis study comprises a Q sorting activity using Q methodology, a think-aloud task, a demographics questionnaire and semi-structured interview questions. The study will be conducted in five RACFs across NSW and QLD, Australia. Using purposive sampling, the project will recruit up to 33 participants from each of the three participant groups. Data from the Q sorting activity will be analysed using the analytic software PQMethod to identify common factors (shared viewpoints). Data from the think-aloud task and semi-structured interviews questions will be thematically analysed using the Framework Method and NVivo qualitative data analysis software.Ethics and disseminationThe study has been approved by St Vincent’s Health and Aged Care Human Research and Ethics Committee and Macquarie University Human Research Ethics Committee. It is expected that findings from the study will be disseminated: in peer-reviewed journals; as an executive report to participating facilities and a summary sheet to participants; as a thesis to fulfill the requirements of a Doctor of Philosophy; and presented at conferences and seminars.

Special Issue Editorial: 7th In Sickness & In Health International Research Conference: Technologies, Bodies & Health Care F rom 7-9 June 2018 we gathered on the Rozelle Campus of the University of Tasmania, inSydney, Australia to extend the tradition of the In Sickness and In Health Conferences. These conferences were born from like-minded individuals (Helsinki-7) who were interested in creating an international network of critical health scholars and scholarship in relation to power, practice and ethics in health care. At the 7th In Sickness and In Health: Technologies, Bodies and Health Care we came from around the world to engage in critical discussions regarding technology and its interface with the social and material body in health and illness. Nowadays, technologies have permeated and contributed to an ideology of effi ciency across the social, critical conversations are needed more than ever. With opportunities for critical discussions becoming increasingly rare and vitally important, I am very pleased to see us continue the conversation with an even wider audience through this special edition of Aporia – The Nursing Journal. Thank you to all authors who have contributed to this special edition of Aporia – The Nursing Journal. I also extend my gratitude to the Editor-in-Chief of Aporia – The Nursing Journal, Professor Dave Holmes, for the opportunity to continue engaging in critical conversations about the assemblages and relations between technologies, bodies and health. I hope that each and every one of you will fi nd the content of these papers thought provoking and inspiring. I look forward to continuing our conversations at the 8th conference 10-12 June, 2020: People, Origin and the End of the Universe, Lleida, Spain. https://isihconference.com/isih-2020/ Rochelle Einboden, RN, PhD Conference Chair In Sickness & In Health Conference

IntroductionDepression is a common disorder among older people living in residential aged care facilities. Several trials have demonstrated the effectiveness of behavioural therapies in treating depressive symptoms in older adults living in the community and in residential aged care. Behavioural Activation is demonstrably effective even when delivered by non-specialists (staff without formal psychological training), although strategies for adapting its use in residential aged care facilities are yet to be explored. This study will determine whether training residential care staff in the use of a structured Behavioural Activation programme is more effective at decreasing depressive symptoms among older residents than internet-based training about depression recognition and management alone.Method and analysisThe behavioural activation in nursing homes to treat depression (BAN-Dep) trial is a pragmatic two-arm parallel clustered randomised controlled trial. It will recruit 666 residents aged 60 or older from 100 residential aged care facilities, which will be randomly assigned to the Behavioural Activation or control intervention. Staff in both treatment groups will be encouraged to complete theBeyondblueProfessional Education to Aged Care e-learning programme to improve their recognition of and ability to respond to depression in older adults. Selected staff from intervention facilities will undergo additional training to deliver an 8-module Behavioural Activation programme to residents with subthreshold symptoms of depression-they will receive ongoing Mental support from trained Behavioural Activation therapists. Outcome measures will be collected by blind research officer at baseline and after 3, 6 and 12 months. The Patient Health Questionnaire-9 is the primary outcome measure of the study.Ethics and disseminationThe trial will comply with the principles of the Declaration of Helsinki for Human Rights and is overseen by the University of Western Australia (reference RA/4/20/4234) and Melbourne Health (reference number HREC/18/MH/47) Ethics Committees. The results of this research project will be disseminated through publications and/or presentations in a variety of media to health professionals, academics, clinicians and the public. Only de-identified group data will be presented.Trial registrationACTRN12618000634279.

Background: The concept of dignity is recognised as a fundamental right in many countries. It is embedded into law, human rights legislation and is often visible in organisations’ philosophy of care, particularly in aged care. Yet, many authors describe difficulties in defining dignity and how it can be preserved for people living in long term care. Objectives: In this article, Nordenfelt’s ‘four notions of dignity’ are considered, drawing on research literature addressing the different perspectives of those who receive, observe or deliver care in the context of the long-term care environment. Methods: A review of the literature was undertaken using the terms ‘nursing homes’, ‘residential care’ or ‘long-term care’. The terms were combined and the term ‘human dignity’ was added. A total of 29 articles met the inclusion criteria from the United Kingdom (14), United States (2), Australia (1), Sweden (3), Hong Kong (2), Norway (3), Nordic (1), Taiwan (1), Netherlands (1). Ethical Considerations: Every effort has been made to ensure an unbiased search of the literature with the intention of an accurate interpretation of findings. Discussion: The four notions of dignity outlined by Nordenfelt provide a comprehensive description of the concept of dignity which can be linked to the experiences of people living in long-term care today and provide a useful means of contextualising the experiences of older people, their families and significant others and also of staff in long-term care facilities. Of particular interest are the similarities of perspectives of dignity between these groups. The preservation of dignity implies that dignity is a quality inherent in us all. This links directly to the exploration and conclusions drawn from the literature review. Conversely, promoting dignity implies that dignity is something that can be influenced by others and external factors. Hence, there are a number of implications for practice. Conclusion: We suggest that two of Nordenfelt’s notions, ‘dignity of identity’ and ‘dignity of Menschenwüde’, are a common thread for residents, family members and staff when conceptualising dignity within long-term care environments.

Background: Evolving technology and scientific advancement have increased the chances of survival of the extremely premature baby; however, such survival can be associated with some severe long-term morbidities. Research question: The research investigates the caregiving and ethical dilemmas faced by neonatal nurses when caring for extremely premature babies (defined as ≤24 weeks’ gestation). This article explores the issues arising for neonatal nurses when they considered the philosophical question of ‘what if it was me and my baby’, or what they believed they would do in the hypothetical situation of going into premature labour and delivering an extremely premature baby. Participants: Data were collected via a questionnaire to Australian neonatal nurses and semi-structured interviews with 24 neonatal nurses in New South Wales, Australia. Ethical considerations: Relevant ethical approvals have been obtained by the researchers. Findings: A qualitative approach was used to analyse the data. The theme ‘imagined futures’ was generated which comprised three sub-themes: ‘choice is important’, ‘not subjecting their own baby to treatment’ and ‘nurses and outcome predictions’. The results offer an important and unique understanding into the perceptions of nursing staff who care for extremely premature babies and their family, see them go home and witness their evolving outcomes. The results show that previous clinical and personal experiences led the nurses in the study to choose to have the belief that if in a similar situation, they would choose not to have their own baby resuscitated and subjected to the very treatment that they provide to other babies. Conclusion: The theme ‘imagined futures’ offers an overall understanding of how neonatal nurses imagine what the life of the extremely premature baby and his or her family will be like after discharge from neonatal intensive care. The nurses’ past experience has led them to believe that they would not want this life for themselves and their baby, if they were to deliver at 24 weeks’ gestation or less.

Introduction Understanding the economic impact of managing allogeneic hematopoietic stem cell transplant (HSCT) recipients with cytomegalovirus (CMV) is important for future planning within institutional transplant programs. CMV remains the most frequent viral infection following HSCT of which the clinical impact on transplant outcomes has been well described. However, much less is known about the impact of CMV on health resource utilisation, re-admissions and hospital costs. In addition to antiviral therapy, there are nursing, medical and pharmacy costs to consider. We therefore undertook a study to evaluate the clinical and economic burden of CMV infection following HSCT in a large Australian transplant centre operating under a universal health care system. Methods A retrospective single centre study at the Royal Melbourne Hospital, Melbourne, Australia was performed on all consecutive allogeneic HSCT recipients between January 2015 to December 2017. CMV pre-emptive monitoring using quantitative CMV plasma viral load was performed twice weekly from time of transplant to 100 days or longer in the presence of graft versus host disease. Clinically significant CMV (csCMV) was defined as patients receiving anti-CMV treatment, often with a plasma CMV viral load >400 IU/ml. Throughout the study period, the first line anti-CMV therapy was ganciclovir; either as oral valganciclovir for outpatient management in asymptomatic patients or IV ganciclovir as an inpatient for patients with concerns about oral absorption. Second-line therapy was IV foscarnet. Hospital costing data for the first and subsequent re-admissions for the first 12 months were obtained from the business intelligence unit. Financial year costing was available for FY2015/2016 to FY2017/2018. Ethics was approved by the Melbourne Health Human Ethics Review Committee (HREC 2017.368). Results A total of 255 patients underwent alloHSCT with a median age of 51 years (IQR 40-59) with the most common underlying diagnoses being AML (41%), ALL (11%) and MDS (11%) (Table 1). Thirty-one percent of transplants used myeloablative conditioning, 54% had unrelated donors and 3% had an umbilical cord source. Pre-transplant recipient CMV seropositivity was 62% (n=158), of whom 139 had detectable CMV viremia and 104 (40.8%) experienced clinically significant CMV (csCMV). The median duration of CMV treatment was 33 days (IQR 21-63). Re-admission to hospital within the first 12 months of HSCT occurred in 78.4%. There was a greater number of admissions observed in csCMV patients compared to no csCMV (median 3 vs 2 admissions, p=0.001) with the duration of admitted days within the first 12 months being significantly greater in csCMV patients compared to no csCMV (median 65 vs 36 days, p<0.00001). The mean total cost of treating patients with csCMV for the first 12 months compared to the total cost for patients not requiring CMV treatment was A$196,822 (US$147,616) and A$114503 (US $85,877) (p<0.0001), respectively. Therefore the crude attributable mean cost of treating csCMV was A$82,319 (US$61,739) per patient for the first 12 months of HSCT. The greatest significant contributory costs were from pharmacy A$17,807 (US$13,355), nursing A$16,944 (US$12,708) and medical A$5,898 (US$4,423). Conclusions The health care cost and resource utilisation of treating CMV infection following an allogeneic HSCT is substantial and places a heavy burden on limited health resources. In this study, patients experiencing csCMV had an increased number and longer total duration of admissions days compared to patients who did not require CMV treatment. Interventions aimed at reducing the burden of CMV in alloHSCT recipients are required. Disclosures Yong: Merck Ltd: Honoraria. Bajel:AbbVie: Membership on an entity's Board of Directors or advisory committees, Other: travel funding. Ritchie:Sanofi: Honoraria; Novartis: Honoraria; Imago: Research Funding; Beigene: Research Funding; Takeda: Research Funding; BMS: Research Funding; Pfizer: Consultancy; Amgen: Consultancy, Honoraria, Research Funding. Slavin:Merck Ltd: Honoraria, Research Funding.

This study aimed to explore the perceived barriers to physical activity among college students Study Design: Qualitative research design Eight focus group discussions on 67 college students aged 18-24 years (48 females, 19 males) was conducted on College premises. Data were analysed using inductive approach. Participants identified a number of obstacles to physical activity. Perceived barriers emerged from the analysis of the data addressed the different dimensions of the socio-ecological framework. The result indicated that the young adults perceived substantial amount of personal, social and environmental factors as barriers such as time constraint, tiredness, stress, family control, safety issues and much more. Understanding the barriers and overcoming the barriers at this stage will be valuable. Health professionals and researchers can use this information to design and implement interventions, strategies and policies to promote the participation in physical activity. This further can help the students to deal with those barriers and can help to instil the habit of regular physical activity in the later adult years.

The stories and identities of people who use social work services are often obscured by mass media stereotypes and labels – ‘failed asylum seekers’, ‘scroungers’, ‘troubled families’. The influence of managerialism compounds this problem, with space for thinking and feeling continually under pressure. This practice paper draws on ideas from social pedagogy to reflect on the benefits of a creative attempt to connect heads and hearts in the academy. Informed by an approach used with nursing students in Australia, social work undergraduates in London (England) were encouraged to engage with a range of creative media (newspapers, films, television, plays, social media) and journal about what they noticed. Drawing on narrative ideas, students reflected on portrayals of people that were ‘thin’ – labelling and oppressive – and ‘thick’ – revealing a richer picture of people’s lives, needs and capabilities. After putting together short stories or accounts of their own, based on their journaling, students were invited to share these in a type of ‘reflecting team’ with peers. This process invited students to develop critical and ethical perspectives through thinking about what had struck them, what they had understood differently about the service user groups, what resonated with them personally, and how this might affect their practice. This small example of creative practice is considered as part of a wider reflection on the value of a rich curriculum for social work education, holding out hope for humane practice in challenging times.

In 2017, Victoria became the first state in Australia to pass legislation permitting voluntary assisted dying. Under this law, only those people who are near the end of their lives may access voluntary assisted dying, and because many of these people require nursing care to manage the progression of their illness or their symptoms, it will invariably have an impact on nursing practice. The Victorian law includes a series of procedural steps as safeguards to ensure that the law operates as intended. To support people who choose voluntary assisted dying and to practice safely within boundaries of the law, nurses must be aware of these requirements and how they operate. However, there are often gaps in nurses’ legal knowledge. This was demonstrated in an article that aimed to inform nurses about the operation of Voluntary Assisted Dying Act 2017 (Vic) but contained several errors and misstatements of the law. Our article corrects these errors and discusses how the law is intended to be applied by revisiting the fictional case of Chloe – a woman with a terminal illness who is seeking voluntary assisted dying. As the Voluntary Assisted Dying Act 2017 (Vic) also protects nurses from liability if they act in accordance with its provisions, we conclude that sound knowledge and understanding of its operation support nurses to provide the safe, comprehensive and compassionate care their patients deserve at the end of life.

…love is queered not when we discover it to be resistant to or more than its known forms, but when we see that there is no world that admits how it actually works as a principle of living. Lauren Berlant – “Love, A Queer Feeling” As the sun beats down on a very dusty Musgrave Park, the crowd is hushed in respect for the elder addressing us. It is Pride Fair Day and we are listening to the story of how this place has been a home for queer and black people throughout Brisbane’s history. Like so many others, this park has been a place of refuge in times when Boundary Streets marked the lines aboriginal people couldn’t cross to enter the genteel heart of Brisbane’s commercial district. The street names remain today, and even if movements across territory are somewhat less constrained, a manslaughter trial taking place nearby reminds us of the surveillance aboriginal people still suffer as a result of their refusal to stay off the streets and out of sight in homes they don’t have. In the past few years, Fair Day has grown in size. It now charges an entry fee to fence out unwelcome guests, so that those who normally live here have been effectively uninvited from the party. On this sunny Saturday, we sit and talk about these things, and wonder at the number of spaces still left in this city for spontaneous, non-commercial encounters and alliances. We could hardly have known that in the course of just a few weeks, the distance separating us from others would grow even further. During the course of Brisbane’s month-long Pride celebrations in 2007, two events affected the rights agendas of both queer and black Australians. First, The Human Rights and Equal Opportunity Commission Report, Same Sex, Same Entitlements, was tabled in parliament. Second, the Federal government decided to declare a state of emergency in remote indigenous communities in the Northern Territory in response to an inquiry on the state of aboriginal child abuse. (The full title of the report is “Ampe Akelyernemane Meke Mekarle”: Little Children are Sacred, and the words are from the Arrandic languages of the Central Desert Region of the Northern Territory. The report’s front cover also explains the title in relation to traditional law of the Yolngu people of Arnhem Land.) While the latter issue has commanded the most media and intellectual attention, and will be discussed later in this piece, the timing of both reports provides an opportunity to consider the varying experiences of two particularly marginalised groups in contemporary Australia. In a period when the Liberal Party has succeeded in pitting minority claims against one another as various manifestations of “special interests” (Brett, Gregg) this essay suggests there is a case to be made for queer and black activists to join forces against wider tendencies that affect both communities. To do this I draw on the work of American critic, Lauren Berlant, who for many years has offered a unique take on debates about citizenship in the United States. Writing from a queer theory perspective, Berlant argues that the conservative political landscape in her country has succeeded in convincing people that “the intimacy of citizenship is something scarce and sacred, private and proper, and only for members of families” (Berlant Queen 2-3). The consequence of this shift is that politics moves from being a conversation conducted in the public sphere about social issues to instead resemble a form of adjudication on the conduct of others in the sphere of private life. In this way, Berlant indicates how heteronormative culture “uses cruel and mundane strategies both to promote change from non-normative populations and to deny them state, federal, and juridical supports because they are deemed morally incompetent to their own citizenship” (Berlant, Queen 19). In relation to the so-called state of emergency in the Northern Territory, coming so soon after attempts to encourage indigenous home-ownership in the same region, the compulsion to promote change from non-normative populations currently affects indigenous Australians in ways that resonate with Berlant’s argument. While her position reacts to an environment where the moral majority has a much firmer hold on the national political spectrum, in Australia these conservative forces have no need to be so eloquent—normativity is already embedded in a particular form of “ordinariness” that is the commonsense basis for public political debate (Allon, Brett and Moran). These issues take on further significance as home-ownership and aspirations towards it have gradually become synonymous with the demonstration of appropriate citizenship under the Coalition government: here, phrases like “an interest rate election” are assumed to encapsulate voter sentiment while “the mortgage belt” has emerged as the demographic most keenly wooed by precariously placed politicians. As Berlant argues elsewhere, the project of normalization that makes heterosexuality hegemonic also entails “material practices that, though not explicitly sexual, are implicated in the hierarchies of property and propriety” that secure heteronormative privilege (Berlant and Warner 548). Inhabitants of remote indigenous communities in Australia are invited to desire and enact normal homes in order to be accepted and rewarded as valuable members of the nation; meanwhile gay and lesbian couples base their claims for recognition on the adequate manifestation of normal homes. In this situation black and queer activists share an interest in elaborating forms of kinship and community that resist the limited varieties of home-building currently sanctioned and celebrated by the State. As such, I will conclude this essay with a model for this alternative process of home-building in the hope of inspiring others. Home Sweet Home Ever since the declaration of terra nullius, white Australia has had a hard time recognising homes it doesn’t consider normal. To the first settlers, indigenous people’s uncultivated land lacked meaning, their seasonal itinerancy challenged established notions of property, while their communal living and wider kinship relations confused nuclear models of procreative responsibility and ancestry. From the homes white people still call “camps” many aboriginal people were moved against their will on to “missions” which even in name invoked the goal of assimilation into mainstream society. So many years later, white people continue to maintain that their version of homemaking is the most superior, the most economically effective, the most functional, with government policy and media commentators both agreeing that “the way out of indigenous disadvantage is home ownership.”(The 1 July broadcast of the esteemed political chat show Insiders provides a representative example of this consensus view among some of the country’s most respected journalists.) In the past few months, low-interest loans have been touted as the surest route out of the shared “squalor” (Weekend Australian, June 30-July1) of communal living and the right path towards economic development in remote aboriginal communities (Karvelas, “New Deal”). As these references suggest, The Australian newspaper has been at the forefront of reporting these government initiatives in a positive light: one story from late May featured a picture of Tiwi Islander Mavis Kerinaiua watering her garden with the pet dog and sporting a Tigers Aussie Rules singlet. The headline, “Home, sweet home, for Mavis” (Wilson) was a striking example of a happy and contented black woman in her own backyard, especially given how regularly mainstream national news coverage of indigenous issues follows a script of failed aboriginal communities. In stories like these, communal land ownership is painted as the cause of dysfunction, and individual homes are crucial to “changing the culture.” Never is it mentioned that communal living arrangements clearly were functional before white settlement, were an intrinsic part of “the culture”; nor is it acknowledged that the option being offered to indigenous people is land that had already been taken away from them in one way or another. That this same land can be given back only on certain conditions—including financially rewarding those who “prove they are doing well” by cultivating their garden in recognisably right ways (Karvelas, “New Deal”)— bolsters Berlant’s claim that government rhetoric succeeds by transforming wider structural questions into matters of individual responsibility. Home ownership is the stunningly selective neoliberal interpretation of “land rights”. The very notion of private property erases the social and cultural underpinnings of communal living as a viable way of life, stigmatising any alternative forms of belonging that might form the basis for another kind of home. Little Children Are Sacred The latest advance in efforts to encourage greater individual responsibility in indigenous communities highlights child abuse as the pivotal consequence of State and Local government inaction. The innocent indigenous child provides the catalyst for a myriad of competing political positions, the most vocal of which welcomes military intervention on behalf of powerless, voiceless kids trapped in horrendous scenarios (Kervalas, “Pearson’s Passion”). In these representations, the potentially abused aboriginal child takes on “supericonicity” in public debate. In her North American context, Berlant uses this concept to explain how the unborn child figures in acrimonious arguments over abortion. The foetus has become the most mobilising image in the US political scene because: it is an image of an American, perhaps the last living American, not yet bruised by history: not yet caught up in the processes of secularisation and centralisation… This national icon is too innocent of knowledge, agency, and accountability and thus has ethical claims on the adult political agents who write laws, make culture, administer resources, control things. (Berlant, Queen 6) In Australia, the indigenous child takes on supericonicity because he or she is too young to formulate a “black armband” view of history, to have a point of view on why their circumstance happens to be so objectionable, to vote out the government that wants to survey and penetrate his or her body. The child’s very lack of agency is used as justification for the military action taken by those who write laws, make the culture that will be recognized as an appropriate performance of indigeneity, administer (at the same time as they cut) essential resources; those who, for the moment, control things. However, and although a government perspective would not recognize this, in Australia the indigenous child is always already bruised by conventional history in the sense that he or she will have trouble accessing the stories of ancestors and therefore the situation that affects his or her entry into the world. Indeed, it is precisely the extent to which the government denies its institutional culpability in inflicting wounds on aboriginal people throughout history that the indigenous child’s supericonicity is now available as a political weapon. Same-Sex: Same Entitlements A situation in which the desire for home ownership is pedagogically enforced while also being economically sanctioned takes on further dimensions when considered next to the fate of other marginalised groups in society—those for whom an appeal for acceptance and equal rights pivots on the basis of successfully performing normal homes. While indigenous Australians are encouraged to aspire for home ownership as the appropriate manifestation of responsible citizenship, the HREOC report represents a group of citizens who crave recognition for already having developed this same aspiration. In the case studies selected for the Same-Sex: Same Entitlements Report, discrimination against same-sex couples is identified in areas such as work and taxation, workers’ compensation, superannuation, social security, veterans’ entitlements and childrearing. It recommends changes to existing laws in these areas to match those that apply to de facto relationships. When launching the report, the commissioner argued that gay people suffer discrimination “simply because of whom they love”, and the report launch quotes a “self-described ‘average suburban family’” who insist “we don’t want special treatment …we just want equality” (HREOC). Such positioning exercises give some insight into Berlant’s statement that “love is a site that has perhaps not yet been queered enough” (Berlant, “Love” 433). A queer response to the report might highlight that by focussing on legal entitlements of the most material kind, little is done to challenge the wider situation in which one’s sexual relationship has the power to determine intimate possessions and decisions—whether this is buying a plane ticket, getting a loan, retiring in some comfort or finding a nice nursing home. An agenda calling for legislative changes to financial entitlement serves to reiterate rather than challenge the extent to which economically sanctioned subjectivities are tied to sexuality and normative models of home-building. A same-sex rights agenda promoting traditional notions of procreative familial attachment (the concerned parents of gay kids cited in the report, the emphasis on the children of gay couples) suggests that this movement for change relies on a heteronormative model—if this is understood as the manner in which the institutions of personal life remain “the privileged institutions of social reproduction, the accumulation and transfer of capital, and self-development” (Berlant and Warner 553). What happens to those who do not seek the same procreative path? Put another way, the same-sex entitlements discourse can be seen to demand “intelligibility” within the hegemonic understanding of love, when love currently stands as the primordial signifier and ultimate suturing device for all forms of safe, reliable and useful citizenly identity (Berlant, “Love”). In its very terminology, same-sex entitlement asks to access the benefits of normativity without challenging the ideological or economic bases for its attachment to particular living arrangements and rewards. The political agenda for same-sex rights taking shape in the Federal arena appears to have chosen its objectives carefully in order to fit existing notions of proper home building and the economic incentives that come with them. While this is understandable in a conservative political environment, a wider agenda for queer activism in and outside the home would acknowledge that safety, security and belonging are universal desires that stretch beyond material acquisitions, financial concerns and procreative activity (however important these things are). It is to the possibilities this perspective might generate that I now turn. One Size Fits Most Urban space is always a host space. The right to the city extends to those who use the city. It is not limited to property owners. (Berlant and Warner, 563) The affective charge and resonance of a concept like home allows an opportunity to consider the intimacies particular to different groups in society, at the same time as it allows contemplation of the kinds of alliances increasingly required to resist neoliberalism’s impact on personal space. On one level, this might entail publicly denouncing representations of indigenous living conditions that describe them as “squalor” as some kind of hygienic short-hand that comes at the expense of advocating infrastructure suited to the very different way of living that aboriginal kinship relations typically require. Further, as alternative cultural understandings of home face ongoing pressure to fit normative ideals, a key project for contemporary queer activism is to archive, document and publicise the varied ways people choose to live at this point in history in defiance of sanctioned arrangements (eg Gorman-Murray 2007). Rights for gay and lesbian couples and parents need not be called for in the name of equality if to do so means reproducing a logic that feeds the worst stereotypes around non-procreating queers. Such a perspective fares poorly for the many literally unproductive citizens, queer and straight alike, whose treacherous refusal to breed banishes them from the respectable suburban politics to which the current government caters. Which takes me back to the park. Later that afternoon on Fair Day, we’ve been entertained by a range of performers, including the best Tina Turner impersonator I’ll ever see. But the highlight is the festival’s special guest, Vanessa Wagner who decides to end her show with a special ceremony. Taking the role of celebrant, Vanessa invites three men on to the stage who she explains are in an ongoing, committed three-way relationship. Looking a little closer, I remember meeting these blokes at a friend’s party last Christmas Eve: I was the only girl in an apartment full of gay men in the midst of some serious partying (and who could blame them, on the eve of an event that holds dubious relevance for their preferred forms of intimacy and celebration?). The wedding takes place in front of an increasingly boisterous crowd that cannot fail to appreciate the gesture as farcically mocking the sacred bastion of gay activism—same-sex marriage. But clearly, the ceremony plays a role in consecrating the obvious desire these men have for each other, in a safe space that feels something like a home. Their relationship might be a long way from many people’s definition of normal, but it clearly operates with care, love and a will for some kind of longevity. For queer subjects, faced with a history of persecution, shame and an unequal share of a pernicious illness, this most banal of possible definitions of home has been a luxury difficult to afford. Understood in this way, queer experience is hard to compare with that of indigenous people: “The queer world is a space of entrances, exits, unsystematised lines of acquaintance, projected horizons, typifying examples, alternate routes, blockages, incommensurate geographies” (Berlant and Warner 558). In many instances, it has “required the development of kinds of intimacy that bear no necessary relation to domestic space, to kinship, to the couple form, to property, or to the nation” (ibid) in liminal and fleeting zones of improvisation like parties, parks and public toilets. In contrast, indigenous Australians’ distinct lines of ancestry, geography, and story continue through generations of kin in spite of the efforts of a colonising power to reproduce others in its own image. But in this sense, what queer and black Australians now share is the fight to live and love in more than one way, with more than one person: to extend relationships of care beyond the procreative imperative and to include land that is beyond the scope of one’s own backyard. Both indigenous and queer Australians stand to benefit from a shared project “to support forms of affective, erotic and personal living that are public in the sense of accessible, available to memory, and sustained through collective activity” (Berlant and Warner 562). To build this history is to generate an archive that is “not simply a repository” but “is also a theory of cultural relevance” (Halberstam 163). A queer politics of home respects and learns from different ways of organising love, care, affinity and responsibility to a community. This essay has been an attempt to document other ways of living that take place in the pockets of one city, to show that homes often exist where others see empty space, and that love regularly survives beyond the confines of the couple. In learning from the history of oppression experienced in the immediate territories I inhabit, I also hope it captures what it means to reckon with the ongoing knowledge of being an uninvited guest in the home of another culture, one which, through shared activism, will continue to survive much longer than this, or any other archive. References Allon, Fiona. “Home as Cultural Translation: John Howard’s Earlwood.” Communal/Plural 5 (1997): 1-25. Berlant, Lauren. The Queen of America Goes to Washington City: Essays on Sex and Citizenship. Durham: Duke University Press, 1997. ———. “Love, A Queer Feeling.” Homosexuality and Psychoanalysis. Eds. Tim Dean and Christopher Lane. Chicago and London: The University of Chicago Press, 2001. 432-51. ———, and Michael Warner. “Sex in Public.” Critical Inquiry 24.2 (1998): 547-566. Brett, Judith. Australian Liberals and the Moral Middle Class: From Alfred Deakin to John Howard. Cambridge: Cambridge University Press, 2003. ———, and Anthony Moran. Ordinary People’s Politics: Australians Talk About Politics, Life and the Future of Their Country. Melbourne: Pluto Press, 2006. Gorman-Murray, Andrew. “Contesting Domestic Ideals: Queering the Australian Home.” Australian Geographer 38.2 (2007): 195-213. Gregg, Melissa. “The Importance of Being Ordinary.” International Journal of Cultural Studies 10.1 (2007): 95-104. Halberstam, Judith. In a Queer Time and Place: Transgender Bodies, Subcultural Lives. New York and London: NYU Press, 2005 Human Rights and Equal Opportunity Commission. Same-Sex: Same Entitlements Report. 2007. 21 Aug. 2007 http://www.hreoc.gov.au/human_rights/samesex/report/index.html>. ———. Launch of Final Report of the Human Rights and Equal Opportunity Commission’s Same-Sex: Same Entitlements Inquiry (transcript). 2007. 5 July 2007 . Insiders. ABC TV. 1 July 2007. 5 July 2007 http://www.abc.net.au/insiders/content/2007/s1966728.htm>. Karvelas, Patricia. “It’s New Deal or Despair: Pearson.” The Weekend Australian 12-13 May 2007: 7. ———. “How Pearson’s Passion Moved Howard to Act.” The Australian. 23 June 2007. 5 July 2007 http://www.theaustralian.news.com.au/story/0,20867,21952951-5013172,00.html>. Northern Territory Government Inquiry Report into the Protection of Aboriginal Children from Sexual Abuse. Ampe Akelyernemane Meke Mekarle: Little Children Are Sacred. 2007. 5 July 2007 http://www.nt.gov.au/dcm/inquirysaac/pdf/bipacsa_final_report.pdf>. Wilson, Ashleigh. “Home, Sweet Home, for Mavis.” The Weekend Australian 12-13 May 2007: 7. Citation reference for this article MLA Style Gregg, Melissa. "Normal Homes." M/C Journal 10.4 (2007). echo date('d M. Y'); ?> <http://journal.media-culture.org.au/0708/02-gregg.php>. APA Style Gregg, M. (Aug. 2007) "Normal Homes," M/C Journal, 10(4). Retrieved echo date('d M. Y'); ?> from <http://journal.media-culture.org.au/0708/02-gregg.php>.

IntroductionThis article addresses the experience of designing and conducting life-writing workshops for a group of clients with severe mental illness; the aim of this pilot study was to begin to determine whether such writing about the self can aid in individual ‘recovery’, as that term is understood by contemporary health professionals. A considerable amount has been written about the potential of creative writing in mental health therapy; the authors of this article provide a brief summary of that literature, then of the concept of ‘recovery’ in a psychology and arts therapy context. There follows a first-hand account by one of the authors of being an arts therapy workshop facilitator in the role of a creative practitioner. This occurred in consultation with, and monitored by, experienced mental health professionals. Life-Writing as ‘Therapeutic’ Life-story or life-writing can be understood in this context as involving more than disclosure or oral expression of a subject’s ‘story’ as in psycho-therapy – life-story is understood as a written, structured narrative. In 2001, Wright and Chung published a review of the literature in which they claimed that writing therapy had been “restimulated by the development of narrative approaches” (278). Pennebaker argues that “catharsis or the venting of emotions” without “cognitive processing” has little therapeutic value and people need to “build a coherent narrative that explains some past experience” in order to benefit from writing” (Pennebaker, Telling Stories 10–11). It is claimed in the Clinical Psychology Review that life-writing has the therapeutic benefits of, for example, “striking physical health and behaviour change” (Esterling et al. 84). The reasons are still unclear, but it is possible that the cognitive and linguistic processing of problematic life-events through narrative writing may help the subject assimilate such problems (Alschuler 113–17). As Pennebaker and Seagal argue in the Journal of Clinical Psychology, the life-writing processallows one to organise and remember events in a coherent fashion while integrating thoughts and feelings ... This gives individuals a sense of predictability and control over their lives. Once an experience has structure and meaning, it would follow that the emotional effects of that experience are more manageable. (1243)It would seem reasonable to suggest that life-writing which constructs a positive recovery narrative can have a positive therapeutic effect, providing a sense of agency, connectedness and creativity, in a similar, integrating manner. Humans typically see their lives as stories. Paul Eakin stresses the link between narrative and identity in both this internal life-story and in outwardly constructed autobiography:narrative is not merely a literary form but a mode of phenomenological and cognitive self-experience, while self – the self of autobiographical discourse - does not necessarily precede its constitution in narrative. (Making Selves 100)So both a self-in-time and a socially viable identity may depend on such narrative. The term ‘dysnarrativia’ has been coined to describe the documented inability to construct self-narrative by those suffering amnesia, autism, severe child abuse or brain damage. The lack of ability to achieve narrative construction seems to be correlated with identity disorders (Eakin, Fictions in Autobiography 124). (For an overview of the current literature on creative and life-writing as therapy see Murphy & Neilsen). What is of particular relevance to university creative writing practitioners/teachers is that there is evidence, for example from Harvard psychiatrist Judith Herman and creative writing academic Vicki Linder, that life-narratives are more therapeutically effective if guided to be written according to fundamental ‘effective writing’ aesthetic conventions – such as having a regard to coherent structure in the narrative, the avoidance of cliché, practising the ‘demonstrate don’t state’ dictum, and writing in one’s own voice, for example. Defining ‘Recovery’There remains debate as to the meaning of recovery in the context of mental health service delivery, but there is agreement that recovery entails significantly more than symptom remission or functional improvement (Liberman & Kopelowicz). In a National Consensus Statement, the Substance Abuse and Mental Health Services Administration (SAMHSA) unit of the US Department of Health and Human Services in 2005 described recovery (in general terms) as being achieved by the enabling of a person with a mental illness to live meaningfully in a chosen community, while also attempting to realize individual potential. ‘Recovery’ as a central concept behind rehabilitation can be understood both as objective recovery – that is, in terms of noting a reduction in objective indicators of illness and disability (such as rates of hospital usage or unemployment) and a greater degree of social functioning – and also as subjective recovery. Subjective recovery can be ascertained by listening closely to what clients themselves have said about their own experiences. It has been pointed out (King, Lloyd & Meehan 2) that there is not always a correspondence between objective indicators of recovery and the subjective, lived experience of recovery. The experience of mental illness is not just one of symptoms and disability but equally importantly one of major challenge to sense of self. Equally, recovery from mental illness is experienced not just in terms of symptoms and disability but also as a recovery of sense of self … Recovery of sense of self and recovery with respect to symptoms and disability may not correspond. (King, Lloyd & Meehan; see also Davidson & Strauss)Symptoms of disability can persist, but a person can have a much stronger sense of self or empowerment – that is still recovery. Illness dislocates the sense of self as part of a community and of a self with skills and abilities. Restoring this sense of empowerment is an aim of arts therapy. To put it another way, recovery is a complex process by which a client with a mental illness develops a sense of identity and agency as a citizen, as distinct from identification with illness and disability and passivity as a ‘patient’. The creative arts have gone well beyond being seen as a diversion for the mentally ill. In a comprehensive UK study of creative arts projects for clients with mental illness, Helen Spandler et al. discovered strong evidence that participation in creative activity promoted a sense of purpose and meaning, and assisted in “rediscovering or rebuilding an identity within and beyond that of someone with mental health difficulties” (795). Recovery is aided by people being motivated to achieve self-confidence through mastery and competence; by learning and achieving goals. Clearly this is where arts therapy could be expected or hoped to be effective. The aim of the pilot study was not to measure ‘creativity’, but whether involvement in what is commonly understood as a creative process (life-writing) can have flow-on benefits in terms of the illness of the workshop participant. The psychologists involved, though more familiar with visual arts therapy (reasonably well-established in Australia – in 2006, the ANZAT began publishing the Australian and New Zealand Journal of Art Therapy), thought creative writing could also be valuable. Preparation for and Delivery of the Workshops I was acutely aware that I had no formal training in delivering a program to clients with mental health illness. I was counselled during several meetings with experienced psychologists and a social worker that the participants in the three workshops over two weeks would largely be people who had degrees of difficulty in living independently, and could well have perceptual problems, could misjudge signals from outside and inside the group, and be on medication that could affect their degree of engagement. Some clients could have impaired concentration and cognition, and a deficit in volition. Participants needed to be free to leave and rejoin the workshops during the afternoon sessions. Attendance might well fall as the workshops progressed. Full ethical clearance was attained though the University of Queensland medical faculty (after detailed description of the content and conduct of the proposed workshops) and consent forms prepared for participants. My original workshop ‘kit’ to be distributed to participants underwent some significant changes as I was counselled and prepared for the workshops. The major adjustment to my usual choice of material and approach was made in view of the advice that recounting traumatic events can have a negative effect on some patients – at least in the short term. For the sake of both the individuals and the group as a whole this was to be avoided. I changed my initial emphasis on encouraging participants to recount their traumatic experiences in a cathartic way (as suggested by the narrative psychology literature), to encouraging them to recount positive narratives from their lives – narratives of ‘recovery’ – as I explain in more detail below. I was also counselled that clients with mental health problems might dwell on retelling their story – their case history – rather than reflecting upon it or using their creative and imaginative ability to shape a life-story that was not a catalogue of their medical history. Some participants did demonstrate a desire to retell their medical history or narrative – including a recurring theme of the difficulty in gaining continuity with one trusted medical professional. I gently guided these participants back to fashioning a different and more creative narrative, with elements of scene creation, description and so on, by my first listening intently to and acknowledging their medical narrative for a few minutes and then suggesting we try to move beyond that. This simple strategy was largely successful; several participants commented explicitly that they were tired of having to retell their medical history to each new health professional they encountered in the hospital system, for example. My principal uncertainty was whether I should conduct the workshops at the same level of complexity that I had in the past with groups of university students or community groups. While in both of those cohorts there will often be some participants with mental health issues, for the most part this possibility does not affect the level or kind of content of material discussed in workshops. However, within this pilot group all had been diagnosed with moderate to severe mental illness, mostly schizophrenia, but also bipolar disorder and acute depression and anxiety disorders. The fact that my credentials were only as a published writer and teacher of creative writing, not as a health professional, was also a strong concern to me. But the clients readily accepted me as someone who knew the difficulty of writing well and getting published. I stressed to them that my primary aim was to teach effective creative writing as an end in itself. That it might be beneficial in health terms was secondary. It was a health professional who introduced me and briefly outlined the research aims of the workshop – including some attempt to measure qualitatively any possible benefits. It was my impression that the participants did not have a diminished sense of my usefulness because I was not a health professional. Their focus was on having the opportunity to practice creative writing and/or participate in a creative group activity. As mentioned above, I had prepared a workshop ‘kit’ for the participants of 15 pages. It contained the usual guidelines for effective writing – extracts from professional writers’ published work (including an extract from my own published work – a matter of equity, since they were allowing me to read their work), and a number of writing exercises (using description, concrete and abstract words, narrative point of view, writing in scenes, show don’t tell). The kit contained extracts from memoirs by Hugh Lunn and Bill Bryson, as well as a descriptive passage from Charles Dickens. An extract from Inga Clendinnen’s 2006 account in Agamemnon’s Kiss: selected essays of her positive interaction with fellow cancer patients (a narrative with the underlying theme of recovery) was also valuable for the participants. I stressed to the group that this material was very similar to that used with beginning writers among university students. I described the importance of life-writing as follows: Life-writing is simply telling a story from your life and perhaps musing or commenting on it at the same time. When you write a short account of something chosen from your life, you are making a pattern, using your memory, using your powers of description – you are being creative. You are being a story-teller. And story-telling is one very important thing that makes us humans different from all other animals – and it is a way in which we find a lot of meaning in our lives.My central advice in the kit was: “Just try to be as honest as you can – and to remember as well as you can … being honest and direct is both the best and the easiest way to write memoir”. The only major difference between my approach with these clients and that with a university class was in the selection of possible topics offered. In keeping with the advice of the psychologists who were experts in the theory of ‘recovery’, the topics were predominantly positive, though one or two topics gave the opportunity to recount and/or explore a negative experience if the participant wanted to do so: A time when I was able to help another personA time when I realised what really mattered in lifeA time when I overcame a major difficultyA time when I felt part of a group or teamA time when I knew what I wanted to do with my lifeA time when someone recognised a talent or quality of mineA time I did something that I was proud of A time when I learned something important to meA memorable time when I lived in a certain house or suburbA story that begins: “Looking back, I now understand that …”The group expressed satisfaction with these topics, though they had the usual writing students’ difficulty in choosing the one that best suited them. In the first two workshops we worked our way through the kit; in the third workshop, two weeks later, each participant read their own work to the group and received feedback from their peers and me. The feedback was encouraged to be positive and constructive, and the group spontaneously adopted a positive reinforcement approach, applauding each piece of writing. Workshop DynamicsThe venue for the workshops was a suburban house in the Logan area of Brisbane used as a drop-in centre for those with mental illness, and the majority of the participants would be familiar with it. It had a large, breezy deck on which a round-table configuration of seating was arranged. This veranda-type setting was sheltered enough to enable all to be heard easily and formal enough to emphasise a learning event was taking place; but it was also open enough to encourage a relaxed atmosphere. The week before the first workshop I visited the house to have lunch with a number of the participants. This gave me a sense of some of the participants’ personalities and degree of engagement, the way they related to each other, and in turn enabled them to begin to have some familiarity with me and ask questions. As a novice at working with this kind of client, I found this experience extremely valuable, especially as it suggested that a relatively high degree of communication and cognition would be possible, and it reduced the anxiety I had about pitching the workshops at an appropriate level. In the course of the first workshop, the most initially sceptical workshop participant ended up being the most engaged contributor. A highly intelligent woman, she felt it would be too upsetting to write about negative events, but ultimately wrote a very effective piece about the empowerment she gained from caring for a stray cat and locating the owner. Her narrative also expressed her realisation that the pet was partly a replacement for spending time with her son, who lived interstate. Another strong participant previously had written a book-length narrative of her years of misdiagnoses and trauma in the hospital system before coming under the care of her present health professionals. The participant who had the least literacy skills was accepted by the group as an equal and after a while contributed enthusiastically. Though he refused to sign the consent form at the outset, he asked to do so at the close of the first afternoon. The workshop was comprised of clients from two health provider organisations; at first the two groups tended to speak with those they already knew (as in any such situation in the broader community), but by the third workshop a sense of larger group identity was being manifested in their comments, as they spoke of what ‘the group’ would like in the future – such as their work being published in some form. It was clear that, as in a university setting, part of the beneficial effect of the workshops came from group and face to face interaction. It would be more difficult to have this dimension of benefit achieved via a web-based version of the workshops, though a chat room scenario would presumably go some way towards establishing a group feeling. Web-based delivery would certainly suit participants who lacked mobility or who lived in the regions. Clearly the Internet is a vital social networking tool, and an Internet-based version of the workshops could well be attempted in the future. My own previous experience of community digital storytelling workshops (Neilsen, Digital Storytelling as Life-writing) suggests that a high degree of technical proficiency can not be expected across such a cohort; but with adequate technical support, a program (the usual short, self-written script, recorded voice-over and still images scanned from the participants’ photo albums, etc) could make digital storytelling a further dimension of therapeutic life-writing for clients with mental illness. One of the most useful teaching techniques in a class room setting is the judicious use of humour – to create a sense of sharing a perspective, and simply to make material more entertaining. I tested the waters at the outset by referring to the mental health worker sitting in the background, and declaring (with some comic exaggeration) my concern that if I didn’t run the workshop well he would report adversely on me. There was general laughter and this expression of my vulnerability seemed to defuse anxiety on the part of some participants. As the workshop progressed I found I could use both humorous extracts of life-writing and ad hoc comic comments (never at the expense of a participant) as freely as in a university class. Participants made some droll comments in the overall context of encouraging one another in their contributions, both oral and written. Only one participant exhibited some temporary distress during one of the workshops. I was allowing another participant the freedom to digress from the main topic and the participant beside me displayed agitation and sharply demanded we get back to the point. I apologised and acknowledged I had not stayed as focused as I should and returned to the topic. I suspect I had a fortunate first experience of such arts therapy workshops – and that this was largely due to the voluntary nature of the study and that most of the participants brought a prior positive experience of the workshop scenario, and prior interest in creative writing, to the workshops. Outcomes A significantly positive outcome was that only one of the nine participants missed a session (through ill-health) and none left during workshops. The workshops tended to proceed longer than the three hours allotted on each occasion. Post-workshop interviews were conducted by a psychologist with the participants. Detailed data is not available yet – but there was a clear indication by almost all participants that they felt the workshops were beneficial and that they would like to participate in further workshops. All but one agreed to have their life-writing included in a newsletter produced by one of the sponsors of the workshops. The positive reception of the workshops by the participants has encouraged planning to be undertaken for a wide-ranging longitudinal study by means of a significant number of workshops in both life-writing and visual arts in more than one city, conducted by a team of health professionals and creative practitioners – this time with sophisticated measurement instruments to gauge the effectiveness of art therapy in aiding ‘recovery’. Small as the workshop group was, the pilot study seems to validate previous research in the UK and US as we have summarised above. The indications are that significant elements of recovery (in particular, feelings of enhanced agency and creativity), can be achieved by life-writing workshops that are guided by creative practitioners; and that it is the process of narrative construction within life-writing that engages with or enhances a sense of self and identity. NoteWe are indebted, in making the summary of the concept of ‘recovery’ in health science terms, to work in progress by the following research team: Robert King, Tom O'Brien and Claire Edwards (School of Medicine, University of Queensland), Margot Schofield and Patricia Fenner (School of Public Health, Latrobe University). We are also grateful for the generous assistance of both this group and Seiji Humphries from the Richmond Queensland Fellowship, in providing preparation for the workshops. ReferencesAlschuler, Mari. “Lifestories – Biography and Autobiography as Healing Tools for Adults with Mental Illness.” Journal of Poetry Therapy 11.2 (1997): 113–17.Davidson, Larry and John Strauss. “Sense of Self in Recovery from Severe Mental Illness.” British Journal of Medical Psychology 65 (1992): 31–45.Eakin, Paul. Fictions in Autobiography: Studies of the Art of Self-Invention. Princeton: Princeton UP, 1985.———. How Our Lives Become Stories: Making Selves. 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