Introduction Most older care home residents will die in the care home environment. The majority of older people would like the opportunity to discuss end-of-life care, though this rarely happens. The current model of palliative care does not cater well for care home residents.
This study explores the narratives shared by older people living in care homes.
Aims 1. What are the issues facing elderly people in the last years of life?
2. What are the key events that shape this phase and how do their interactions and relationships with carers, healthcare professionals, family and friends affect this?
Methods Five participants were recruited from two care homes in the South West of England. Each participant was interviewed at least three times over ten months. A structural narrative analysis was performed and a typology generated to present the different narratives that might constrain and/or empower the participants in relation to their ageing process.
Results Participants’ narratives are presented in three different contexts: Becoming a care home resident, living in a care home and death and dying. A variety of narrative types emerged, but the concept of “imposed dependency” was a key thread. In addition to presenting the findings in the traditional academic format, 5 illustrations have been commissioned to bring some of the relevant themes to life.
Conclusions The narratives constructed suggest that there is still much to be done in order to improve transition into a care home and to promote autonomy and choice, particularly at the end of life.
. Bingley AF, Thomas C, Brown J, Reeve J & Payne S (2008) Developing narrative research in supportive and palliative care: the focus on illness narratives, Palliative Medicine, 22: 653–658.
. Borgstrom E (2015) Social death in end-of-life care policy. Contemporary Social Science, 10(3): 272–283
. Cornwell J (1984) Hard-Earned Lives: Accounts of Health and Illness from East London, London: Tavistock.
. Gilleard C & Higgs P (2010) Ageing without agency: Theorising the fourth age, Ageing & Mental Health, 14(2): 121–128.
. Gott M, Small N, Barnes S, Payne S & Seamark D (2008) Older people’s views of good death in heart failure: implications for palliative care provision. Social Science & Medicine, 67: 1113–1121.
. Greenhalgh T & Hurwitz B (1999) Narrative based medicine: Why study narrative?BMJ, 318:48.
. Higgs P and Rees Jones I. (2009) Medical Sociology and Old Age: Towards a sociology of health in later life, Abingdon: Routledge.
. Kelly CN. (2013) Moving to Manage: A mixed methods study of later life relocation into supported housing. Edinburgh Napier University. PhD thesis.
. Kinley J, Hockley J, Stone L, Dewey M, Hansford P, Stewart R, McCrone P, Begum A, Sykes N. (2014) The provision of care for residents dying in UK nursing care homes. Age and Ageing, 43(3):375–379.
. Lloyd L, Calnan M, Cameron A, Seymour J & Smith R (2014) Identity in the fourth age: perseverance, adaptation and maintaining dignity. Ageing and Society, 34:1–19.
. Mathie E, Goodman C, Crang C, Froggatt K, Iliffe S, Manthorpe J & Barclay S (2012) An uncertain future: The unchanging views of care home residents about living and dying, Palliative Medicine, 26: 734
. National End of Life Care Intelligence Network (2013) What We Know Now 2013: New Information Collated by the National End of Life Care Intelligence Network. London: Public Health England.
. Phoenix C, Smith B & Sparkes AC (2010) Narrative analysis in ageing studies: A typology for consideration. Journal of Ageing Studies 24: 1–11.
. Public Health England (2017) End of Life Care Profiles: Place of Death. Available at: http://fingertips.phe.org.uk/profile/end-of-life/data#page/0/gid/1938132883/pat/6/par/E12000004/ati/102/are/E06000015 (Accessed 24/01/17)
. Riessman C. (2008) Narrative methods for the human sciences. London: Sage.
. Shepherd V, Wood F & Hood K (2017) Establishing a set of research priorities in care homes for older people in the UK: a modified Delphi consensus study with care home staff. Age and Ageing 46 (2): 284–290
Statistics from Altmetric.com
If you wish to reuse any or all of this article please use the link below which will take you to the Copyright Clearance Center’s RightsLink service. You will be able to get a quick price and instant permission to reuse the content in many different ways.