Social welfare needs of bereaved Australian carers: Implications of insights from palliative care and welfare workers.
bereavement
family carers
palliative care
social welfare
Journal
Health & social care in the community
ISSN: 1365-2524
Titre abrégé: Health Soc Care Community
Pays: England
ID NLM: 9306359
Informations de publication
Date de publication:
05 2021
05 2021
Historique:
revised:
09
11
2020
received:
17
06
2020
accepted:
11
02
2021
pubmed:
12
3
2021
medline:
3
11
2021
entrez:
11
3
2021
Statut:
ppublish
Résumé
An individual and psychological emphasis has influenced practice and research on bereavement following informal care provision in the context of life-limiting illness. Consideration of the potential for bereavement to be shaped by intersecting social and structural inequities is needed; and should include an understanding of interactions with government institutions and social policy. This qualitative study employed interpretive description to explore the way in which palliative care workers and welfare sector workers perceive and approach experiences and needs of bereaved carers receiving government income support or housing assistance in Western Sydney, an area associated with recognised socioeconomic disadvantage. A total of 21 palliative care workers within a public health service and welfare workers from two government social welfare services participated in in-depth interviews. Data were analysed using framework analysis. Participants highlighted social welfare policy and related interactions that may impact bereavement, potentially related to financial, housing and employment precariousness. Personal, interpersonal and structural factors perceived to shape the navigation of welfare needs were explored, alongside needed professional and structural changes envisioned by workers. With limited forms of capital, vulnerably positioned carers may encounter difficulties that heighten their precariousness in bereavement. Transactional organisational cultures alongside health and welfare agencies that function in a siloed manner appear to contribute to structural burden for carers, following death due to life-limiting illness. Palliative care and welfare workers also associated elements of their work with bereaved carers with their own experiences of helplessness, frustration and distress. Findings point to a need for the development of interagency strategies in addition to policy underpinned by more nuanced understandings of vulnerability in bereavement, post-caring.
Types de publication
Journal Article
Research Support, Non-U.S. Gov't
Langues
eng
Sous-ensembles de citation
IM
Pagination
631-642Informations de copyright
© 2021 John Wiley & Sons Ltd.
Références
Abel, J., Sallnow, L., Murray, S., & Kerin, M. (2016). Each community is prepared to help: Community development in end of life care - Guidance on ambition six. The National Council for Palliative Care.
Ahmed, N., Bestall, J. C., Admedsai, S. H., Payne, S. A., Clark, D., & Noble, B. (2004). Systematic review of the problems and issues of accessing specialist palliative care by patients, carers and health and social care professionals. Palliative Medicine, 18, 525-542. https://doi.org/10.1191/0269216304pm921oa
Allan, J., & Harms, L. (2010). “Power and prejudice”: Thinking differently about grief. Grief Matters: The Australian Journal of Grief and Bereavement, 13(3), 72-75.
Australian Bureau of Statistics. (2016). Index of relative socio-economic disadvantage map. Retrieved from http://www.abs.gov.au/ausstats/abs@.nsf/Lookup/by%20Subject/2033.0.55.001~2016~Main%20Features~IRSD%20Interactive%20Map~15
Bindley, K., Lewis, J., Travaglia, J., & DiGiacomo, M. (2019). Disadvantaged and disenfranchised in bereavement: A scoping review of social and structural inequity following expected death. Social Science & Medicine, 242, 1-16. https://doi.org/10.1016/j.socscimed.2019.112599
Blackburn, P., & Bulsara, C. (2018). "I am tired of having to prove that my husband was dead." Dealing with practical matters in bereavement and the impact on the bereaved. Death Studies, 42(10), 1-9. https://doi.org/10.1080/07481187.2017.1415392
Bourdieu, P. (1986). The forms of capital. Translated by Richard Nice. In J. G. Richardson (Ed.), Handbook of theory and research for the sociology of education (pp. 241-258). Greenwood Press. (Original work published 1983)
Bowman, D., Thornton, D., & Mallett, S. (2019). Reclaiming social security for a just future. Brotherhood of St Laurence.
Breen, L. J., & O’Connor, M. (2007). The fundamental paradox in the grief literature: A critical reflection. Omega, 66(3), 199-218. https://doi.org/10.2190/OM.55.3.c
Bryant, T., & Raphael, D. (2018). Intersectionality, the welfare state and women’s health. Women's Health & Urban Life, 13(2), 3-17.
Buckle, J. L., Corbin Dwyer, S., & Jackson, M. (2010). Qualitative bereavement research: Incongruity between the perspectives of participants and research ethics boards. International Journal of Social Research Methodology, 13(2), 111-125. https://doi.org/10.1080/13645570902767918
Committee for Economic Development of Australia. (2018). How unequal? Insights on inequality. Committee for Economic Development of Australia.
Corden, A., Hirst, M., & Nice, K. (2010). Death of a partner. Bereavement Care, 29(1), 23-28. https://doi.org/10.1080/02682621003707423
DiGiacomo, M., Lewis, J., Phillips, J., Nolan, M., & Davidson, P. M. (2015). The business of death: A qualitative study of financial concerns of widowed older women. BMC Women's Health, 15(1), 1-10. https://doi.org/10.1186/s12905-015-0194-1
Doka, K. J. (2002). Introduction. In: K. Doka (Ed.), Disenfranchised grief: New directions, challenges and strategies of practice (pp. 5-22). Research Press.
Essue, B. M., Beaton, A., Hull, C., Belfrage, J., Thompson, S., Mechen, M., & Gillespie, J. A. (2015). Living with economic hardship at the end of life. BMJ Supportive and Palliative Care, 5, 129-137. https://doi.org/10.1136/bmjspcare-2013-000460
Fineman, M. A. (2008). The vulnerable subject: Anchoring equality in the human condition. Yale Journal of Law and Feminism, 20(1), 1-23.
Funk, L. M., Dansereau, L., & Novek, S. (2019). Carers as system navigators: Exploring sources, processes and outcomes of structural burden. The Gerontologist, 59(3), 426-435. https://doi.org/10.1093/geront/gnx175
Gardiner, C., Taylor, B., Robinson, J., & Gott, M. (2019). Comparison of financial support for family caregivers of people at the end of life across six countries: A descriptive study. Palliative Medicine, 33(9), 1189-1211. https://doi.org/10.1177/0269216319861925
Garrido, M. M., & Prigerson, H. G. (2014). The end of life experience - Modifiable predictors of caregivers’ bereavement adjustment. Cancer, 120(6), 918-925. https://doi.org/10.1002/cncr.28495
Ghesquiere, A. M., Haidar, Y. M., & Shear, K. (2011). Risks for complicated grief in family caregivers. Journal of Social Work in End of Life and Palliative Care, 7(2-3), 216-240. https://doi.org/10.1080/15524256.2011.593158
Guest, G., Bunce, A., & Johnson, L. (2006). How many interviews are enough? An experiment with data saturation and variability. Field Methods, 18(1), 59-82. https://doi.org/10.1177/1525822X05279903
Hall, C., Hudson, P., & Boughey, A. (2012). Bereavement support standards for specialist palliative care services. Department of Health, State Government of Victoria.
Hanratty, B., Holland, P., & Whitehead, M. (2007). Financial stress and strain associated with terminal cancer - A review of the evidence. Palliative Medicine, 21, 595-607. https://doi.org/10.1177/0269216307082476
Hanratty, B., Jacoby, A., & Whitehead, M. (2008). Socioeconomic differences in service use, payment and receipt of illness-related benefits in the last year of life: Findings from the British Household Panel Survey. Palliative Medicine, 22, 248-255. https://doi.org/10.1177/0269216307087140
Harris, D. (2010). Oppression of the bereaved: A critical analysis of grief in western society. Omega, 60(3), 241-253. https://doi.org/10.2190/0M.60.3.c
Harris, D. L. (2016). Social expectations of the bereaved. In D. L. Harris & T. C. Bordere (Eds.), Handbook of social justice in loss and grief: exploring diversity, equity and inclusion (pp. 165-175). Routledge.
Holtslander, L., Baxter, S., Mills, K., Bocking, S., Dadgostari, T., Duggleby, W., Duncan, V., Hudson, P., Ogunkorode, A., & Peacock, S. (2017). Honoring the voices of bereaved caregivers: A metasummary of qualitative research. BMC Palliative Care, 16(48), 1-18. https://doi.org/10.1186/s12904-017-0231-y
Hudson, P., Hall, C., Boughey, A., & Roulston, A. (2018). Bereavement support standards and bereavement care pathway for quality palliative care. Palliative & Supportive Care, 16(4), 375-387. https://doi.org/10.1017/S1478951517000451
Hunt, M. R. (2009). Strengths and challenges in the use of interpretive description: Reflections arising from a study of the moral experience of health professionals in humanitarian work. Qualitative Health Research, 19(9), 1284-1292. https://doi.org/10.1177/1049732309344612
Keleher, H. (2007). Chapter 3: Reframing Health Promotion. In H. Keleher, C. MacDougall, & B. Murphy (Eds.), Understanding health promotion (pp. 29-46). Oxford University Press.
Kellehear, A. (2013). Compassionate communities: End of life care as everyone’s responsibility. QJM: an International Journal of Medicine, 106(12), 1071-1075. https://doi.org/10.1093/qjmed/hct200
Kellehear, A. (2005). Compassionate cities: Public health and end-of-life care. Routledge.
Koffman, J., Burke, G., Dias, A., Raval, B., Byrne, J., Gonzales, J., & Daniels, C. (2007). Demographic factors and awareness of palliative care and related services. Palliative Medicine, 21, 145-153. https://doi.org/10.1177/0269216306074639
Lewis, J. M., DiGiacomo, M., Currow, D. C., & Davidson, P. M. (2013). Dying in the margins: Understanding palliative care and socioeconomic deprivation in the developed world. Journal of Pain and Symptom Management, 41(1), 105-118. https://doi.org/10.1016/j.jpainsymman.2010.10.265
Neimeyer, R. A., & Burke, L. A. (2012). Complicated grief and the end of life: Risk factors and treatment considerations. In J. L. Werth (Ed.) Counselling clients near the end of life: A practical guide for mental health professionals (pp. 205-228). Springer Publishing Company.
Portacolone, E. (2013). The notion of precariousness among older adults living alone in the U.S. Journal of Aging Studies, 27(2), 166-174. https://doi.org/10.1016/j.jaging.2013.01.001
Quesada, J., Hart, L. K., & Bourgois, P. (2011). Structural vulnerability and health: Latino migrant laborers in the United States. Medical Anthropology, 30(4), 339-362. https://doi.org/10.1080/01459740.2011.576725
Raphael, D., & Bryant, T. (2015). Power, intersectionality and the life-course: Identifying the political and economic structures of welfare states that support or threaten health. Social Theory & Health, 13(3-4), 245-266. https://doi.org/10.1057/sth.2015.18
Reimer-Kirkham, S., Stajduhar, K., Pauly, B., Giesbrecht, M., Mollison, A., McNeil, R., & Wallace, B. (2016). Death is a social justice issue: Perspectives on equity-informed palliative care. Advances in Nursing Science, 39(4), 293-307. https://doi.org/10.1097/ANS.0000000000000146
Reynolds, J. J. (2002). Disenfranchised Grief and the Politics of Helping: Social Policy and Its Clinical Implications. In K. Doka (Ed.), Disenfranchised grief: New directions, challenges and strategies for practice (pp. 351-387). Research Press.
Ritchie, J., & Lewis, J. (2003). Qualitative research practice: A guide for social science students and researchers. Sage Publications.
Rumbold, B., & Aoun, S. (2014). Bereavement and palliative care: A public health perspective. Progress in Palliative Care, 22(3), 131-135. https://doi.org/10.1179/1743291X13Y.0000000079
Sallnow, L., & Paul, S. (2015). Understanding community engagement in end of life care: Developing conceptual clarity. Critical Public Health, 25(2), 231-238. https://doi.org/10.1080/09581596.2014.909582
Sallnow, L., Richardson, H., Murray, S. A., & Kellehear, A. (2016). The impact of a new public health approach to end of life care: A systematic review. Palliative Medicine, 30(3), 200-201. https://doi.org/10.1177/0269216315599869
Sleeman, K. E., Davies, J. M., Verne, J., Gao, W., & Higginson, I. J. (2016). The changing demographics of inpatient hospice death: Population-based cross-sectional study in England, 1993-2012. Palliative Medicine, 30(1), 45-53. https://doi.org/10.1177/0269216315585064
Smith, J., & Firth, J. (2011). Qualitative data analysis: The framework approach. Nurse Researcher, 18(2), 52-62. https://doi.org/10.7748/nr2011.01.18.2.52.c8284
Stajduhar, K. I. (2019). Provocations on privilege in palliative care: Are we meeting our core mandate? Progress in Palliative Care, 28(2), 89-93. https://doi.org/10.1080/09699260.2019.1702334
Stajduhar, K. I., Martin, W., & Cairns, M. (2010). What makes grief difficult? Perspectives from bereaved family caregivers and healthcare providers of advanced cancer patients. Palliative and Supportive Care, 8(3), 277-289. https://doi.org/10.1017/S1478951510000076
Stroebe, M., Schut, H., & Stroebe, W. (2007). Health outcomes of bereavement. The Lancet, 370(9603), 1960-1973. https://doi.org/10.1016/S0140-6736(07)61816-9
Taylor, M. G., & Quesnel-Vallée, A. (2017). The structural burden of caregiving: Shared challenges in the United States and Canada. The Gerontologist, 57(1), 19-25. https://doi.org/10.1093/geront/gnw102
Thorne, S. (2016). Interpretive description: Qualitative research for applied practice (2nd ed.). Routledge.
Thorne, S., Kirkham, S. R., & MacDonald-Emes, J. (1997). Interpretive description: A noncategorical qualitative alternative for developing nursing knowledge. Research in Nursing & Health, 20(2), 169-177. https://doi.org/10.1002/(SICI)1098-240X(199704)20:2<169:AID-NUR9>3.3.CO;2-B
Thorne, S., Kirkham, S. R., & O'Flynn-Magee, K. (2004). The analytic challenge in interpretive description. International Journal of Qualitative Methods, 3(1), 1-11. https://doi.org/10.1177/160940690400300101
Woodward, K. (2018). The relevance of Bourdieu's concepts for studying the intersections of poverty, race and culture. In T. Medvetz & J. J. Sallaz (Eds.), The Oxford handbook of Pierre (pp. 629-644). Oxford University Press.
World Health Organization. (1986). The Ottawa charter for health promotion. WHO. Retrieved from http://www.who.int/healthpromotion/conferences/previous/ottawa/en/index.html