Noonan K., Horsfall D., Leonard R., and Rosenberg J. (2016) Developing death literacy. Progress in Palliative Care (original) (raw)
Related papers
2022
Background Death literacy includes the knowledge and skills that people need to gain access to, understand, and make informed choices about end of life and death care options. The Death Literacy Index (DLI) can be used to determine levels of death literacy across multiple contexts, including at a community/national level, and to evaluate the outcome of public health interventions. As the rst measure of death literacy, the DLI has potential to signi cantly advance public health approaches to palliative care. The current study aimed to provide the rst assessment of the psychometric properties of the DLI in the UK, alongside population-level benchmarks. Methods A large nationally representative sample of 399 participants, strati ed by age, gender and ethnicity, were prospectively recruited via an online panel. The factor structure of the 29-item DLI was investigated using con rmatory factor analysis. Internal consistency of subscales was assessed alongside interpretability. Hypothesised associations with theoretically related/unrelated constructs were examined to assess convergent and discriminant validity. Descriptive statistics were used to provide scaled mean scores on the DLI. Results Con rmatory factor analysis supported the original higher-order 8 factor structure, with the best tting model including one substituted item developed speci cally for UK respondents. The subscales reported high internal consistency. Good convergent and discriminant validity was evidenced in relation to objective knowledge of the death system, death competency, actions relating to death and dying in the community and loneliness. Good known-groups validity was achieved with respondents with professional/lived experience of end-of-life care reporting higher levels of death literacy. There was little sociodemographic variability in DLI scores. Scaled population-level mean scores were near the mid-point of DLI subscale/total, with comparatively high levels of experiential knowledge and the ability to talk about death and dying. Conclusions Psychometric evaluations suggest the DLI is a reliable and valid measure of death literacy for use in the UK, with population level benchmarks suggesting the UK population could strengthen capacity in factual knowledge and accessing help. International validation of the DLI represents a signi cant advancement in outcome measurement for public health approaches to palliative care.
Rethinking Death Education as Part of Public Health Policy
Recent Developments in Medicine and Medical Research Vol. 12, 2021
Death and dying are still taboo subjects in today's society. In most western countries, people die mostly in hospitals, surrounded by health professionals and high technology, but with no real humanisation of care. This transfer of death from the home to hospitals, which began in the 1960s of the last century, has brought social and cultural consequences for the way we deal with the end of life. We will have to save the work of some experts, like Elisabeth Kübler-Ross (1926-2004), to consider the need for death education. Based on the work of this paradigmatic author and other studies over time, we present a set of proposals for implementing death education as part of public health policy.
Palliative Care and Social Practice
Access to palliative care for marginalized communities is frequently problematized as a major challenge facing palliative care services. The traditional response of asking what services can do for the disadvantaged has been invigorated by a new wave of public health measures that embrace death and dying as social processes and ask, what can be done together with such communities as partners working in palliative care. Such work has generated a significant amount of academic, social and political interests over the last 20 years; however, we are yet to see a consistent and sustained change in approach from providers. We argue that this is due to inherent tensions that arise when modelling death, dying and loss as a unified and shared social process. Unresolved tensions destabilize the theoretical foundations and risk misrepresentation of core philosophies. In this integrative review of 75 articles, we present previously undiscussed areas of contention drawing from a pan-disciplinary ...
The public health end-of-life care movement: history, principles, and styles of practice
Psychosocial Issues in Palliative Care: A community based approach for life limiting illness, 2018
This chapter briefly outlines the history, key concepts, and main practice methods from public health approaches to end-of-life care. Although linked to psychosocial care approaches, its main methods draw not from psychology or health services inspired approaches but rather from health promotion, community development, and civic engagement. Key methods covered include community volunteering, social networking, community engagement, and compassionate communities and cities. The aim of these kinds of approaches is to embed palliative care practice as a social and civic practice in all sectors of society and to ensure that palliative care as a policy is represented in all civic policies (e.g. schools, workplaces, faith groups, and cultural activities) and not solely in health care.
2015
Background: This thesis stemmed from my experience as a hospice social worker. In this role I was aware that children were often excluded from conversation, education and support about death, dying and bereavement and was keen to explore how the Hospice team could address this issue. My practice experience paralleled UK policy making on end-of-life care, which argued for discourse on death, dying and bereavement to be promoted in the community to help prevent negative end-oflife and bereavement experiences (Scottish Government 2008; Department of Health 2008; Department of Health 2010). In Scotland, engaging with schools to equip children with skills and knowledge to cope with death and bereavement has been emphasised (Scottish Government 2010). These policy movements recognise the significance of public health approaches to end-of-life care, which focus on the multi-dimensional (physical, psychological and social) nature of problems and required solutions. Recently, such approaches have been gaining recognition concerning their contribution to end-of-life care. It has been suggested that hospices are well situated to promote such activities due to their expertise in end-of-life care (Salau et al. 2007). Aim and objectives: This thesis aimed to explore, implement and evaluate models of best practice in which hospices and schools can work in partnership to promote education and support around death, dying and bereavement from a health promotion perspective. It specifically sought to increase understanding about current practice in primary schools related to death, dying and bereavement and develop practice knowledge about the role of the Hospice in working with school communities to enhance such work. Methods: The research was facilitated in two primary schools in Scotland, using collaborative inquiry within an action research methodology. It was conducted over three phases. Phase one (preparation and scoping) involved a literature review, visits to other hospices and focus groups with hospice staff. Phase two (exploration) included a series of interviews and focus groups with children aged 9-12 years, parents and schools staff to develop collaborative inquiry and engage in a process of ii change. Phase three (planning and developing) comprised of deciding and advancing models of practice. Findings: Practice innovations were identified at each school that were of relevance to the school curriculum, the relationship between hospices and school communities, and the relationship between hospices and the wider society more generally. These innovations can be understood as health promoting palliative care activities, as defined by Kellehear (2005), due to the process in which they were designed and their focus on developing capacity to respond to death, dying and bereavement. Conclusion: The action research process identified the significance of sharing and transferring knowledge across and between hospice and school communities. It demonstrated that hospices have unique capacity to develop conversation, education and support around death, dying and bereavement in school communities. In order to fulfil this potential role, this will require a reorientation of service delivery that focuses on wider training, support, awareness raising and advocacy. The study has also demonstrated that action research is well situated to develop health promoting palliative care activities according to the shared goals of participation, ownership and empowerment. iii Acknowledgements I cannot begin this thesis without first saying a special thank you to all the people who were part of this research, who shared their experiences, looked towards the future and believed in change. I am indebted to those who continue to be involved in the practice innovations that are ongoing, in particular Helen Quinn, whose firm beliefs in the rights of children has ensured that practice continues despite a variety of organisational changes. I am grateful to Strathcarron Hospice who funded this research and would like to thank all the management team for being open to change and the staff who supported both me and the research. I would like to thank my supervisors, Professor Viv Cree and Professor Scott Murray, for their support, guidance and inspiration throughout my PhD journey and into my academic career. I am thankful too for the support of my PhD peers in both social work and medicine. In particular Libby Sallnow, whose shared enthusiasm for, and commitment to, health promoting palliative care was invaluable, and Barbara Kimbell, who shared the smooth and the rough of this journey and, very kindly, gave her time to proofread this thesis. I also want to thank my wonderful family and friends who took care of my daughter and made finishing the last leg of this PhD possible; in particular my in-laws, Ann and Mick McKay, and my mum, Christine Paul, all of whom have given her so much love and care. Lastly, but by no means the least, I am eternally grateful for the love and support of my husband, Michael McKay. During this PhD I experienced my most significant goodbyes and hellos; at the beginning my father, Anthony Paul, died and, near the end, my daughter, Ada McKay, was born, both of whom continue to influence and inspire me in numerous ways. Michael has supported me through all of this and to the finish line of the PhD marathon. He will always be the perfect distraction. v Dedicated to
BMC Palliative Care
Background Death literacy includes the knowledge and skills that people need to gain access to, understand, and make informed choices about end of life and death care options. The Death Literacy Index (DLI) can be used to determine levels of death literacy across multiple contexts, including at a community/national level, and to evaluate the outcome of public health interventions. As the first measure of death literacy, the DLI has potential to significantly advance public health approaches to palliative care. The current study aimed to provide the first assessment of the psychometric properties of the DLI in the UK, alongside population-level benchmarks. Methods A large nationally representative sample of 399 participants, stratified by age, gender and ethnicity, were prospectively recruited via an online panel. The factor structure of the 29-item DLI was investigated using confirmatory factor analysis. Internal consistency of subscales was assessed alongside interpretability. Hypo...