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Stories from people living with frailty

Published online by Cambridge University Press:  09 August 2019

Anna Lloyd Open the ORCID record for Anna Lloyd [Opens in a new window] ,
Erna Haraldsdottir ,
Marilyn Kendall ,
Scott A. Murray  and
Brendan McCormack
Anna Lloyd*
Affiliation:
St Columba's Hospice, Centre for Education and Research, Edinburgh, UK
Erna Haraldsdottir
Affiliation:
St Columba's Hospice, Centre for Education and Research, Edinburgh, UK
Marilyn Kendall
Affiliation:
Primary Palliative Care Research Group, Usher Institute for Population Health Sciences and Informatics, Edinburgh University, Edinburgh, UK
Scott A. Murray
Affiliation:
Primary Palliative Care Research Group, Usher Institute for Population Health Sciences and Informatics, Edinburgh University, Edinburgh, UK
Brendan McCormack
Affiliation:
Division of Nursing, Queen Margaret University, Edinburgh, UK
*
*Corresponding author. Email: alloyd@stcolumbashospice.org.uk
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Abstract

We describe the findings of a qualitative longitudinal interview study of a group of initially community-dwelling frail older people, and their informal and formal carers. We used a narrative approach to explore the role that narrative may have for people living with frailty. This has been less explored comparative to the experiences of those living with chronic illness. The frail older people told stories of their experiences that revealed three distinct shapes or typologies. These were either stable, unbalancing or overwhelmed, and related to how the person managed to adapt to increasing challenges and losses, and to reintegrate their sense of self into a cohesive narrative. Each is illustrated by an individual case story. Frailty is described as both biographically anticipated yet potentially biographically disruptive as older people may struggle to make sense of their circumstances without a clear single causative factor. Findings are discussed in relation to biographical disruption and reconstruction in chronic illness and the rhetoric around ‘successful ageing’. We conclude by drawing attention to the complex individual and social factors that contribute to the experience of living with frailty in later life.

Keywords

narrativesfrailtyolder peoplequalitative researchlongitudinal research
Type
Article
Information
Ageing & Society , Volume 40 , Issue 12 , December 2020 , pp. 2732 - 2753
Copyright
Copyright © Cambridge University Press 2019

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References

Allen, RE and Wiles, JL (2013) The utility of positioning theory to the study of ageing: examples from research with childless older people. Journal of Aging Studies 27, 175–187.CrossRefGoogle Scholar
Bingley, AF, McDermott, E, Thomas, C, Payne, S, Seymour, J and Clark, D (2006) Making sense of dying: a review of narratives written since 1950 by people facing death from cancer and other diseases. Palliative Medicine 20, 183–195.CrossRefGoogle ScholarPubMed
Bury, M (1982) Chronic illness as biographical disruption. Sociology of Health and Illness 4, 167–182.Google ScholarPubMed
Bury, M (2001) Illness narratives: fact or fiction? Sociology of Health and Illness 23, 263–285.CrossRefGoogle Scholar
Charmaz, K (1995) The body, identity, and self. Sociological Quarterly 36, 657–680.CrossRefGoogle Scholar
Clarke, A and Seymour, J (2010) ‘At the foot of a very long ladder’: discussing the end of life with older people and informal caregivers. Journal of Pain and Symptom Management 40, 857–869.CrossRefGoogle Scholar
Clegg, A, Young, J, Iliffe, S, Rikkert, MO and Rockwood, K (2013) Frailty in elderly people. The Lancet 381, 752–762.CrossRefGoogle ScholarPubMed
Cornwell, J (1984) Hard-earned Lives: Accounts of Health and Illness from East London. London: Routledge Kegan and Paul.Google Scholar
Crossley, ML (1999) Making sense of HIV infection: discourse and adaptation to life with a long-term HIV positive diagnosis. Health 3, 95–120.Google Scholar
De Medeiros, K (2013) Narrative Gerontology in Research and Practice. New York, NY: Springer.Google Scholar
Dodge, R, Daly, AP, Huyton, J and Sanders, LD (2012) The challenge of defining wellbeing. International Journal of Wellbeing 2, 222–235.CrossRefGoogle Scholar
Elliot, J (2005) Using Narrative in Social Research: Qualitative and Quantitative Perspectives. London: Sage.CrossRefGoogle Scholar
Folstein, MF, Folstein, SE and McHugh, PR (1975) ‘Mini-mental state’: a practical method for grading the cognitive state of patients for the clinician. Journal of Psychiatric Research 12, 189–198.CrossRefGoogle Scholar
Frank, AW (2013) The Wounded Storyteller: Body, Illness, and Ethics. Chicago, IL: University of Chicago Press.Google Scholar
Frost, R, Kharicha, K, Jovicic, A, Liljas, AE, Illiffe, S, Manthorpe, J, Gardner, B, Avgerinou, C, Goodman, C, Drennan, VM and Walters, K (2018) Identifying acceptable components for home-based health promotion services for older people with mild frailty: a qualitative study. Health & Social Care in the Community 26, 393–403.CrossRefGoogle ScholarPubMed
Gilleard, C and Higgs, P (2010) Aging without agency: theorizing the fourth age. Aging and Mental Health 14, 121–128.CrossRefGoogle ScholarPubMed
Jones, RL (2006) ‘Older people’ talking as if they are not older people: positioning theory as an explanation. Journal of Aging Studies 20, 79–91.CrossRefGoogle Scholar
Kaufman, SR (1994) The social construction of frailty: an anthropological perspective. Journal of Aging Studies 8, 45–58.CrossRefGoogle Scholar
Kellehear, A (2007) A Social History of Dying. Cambridge: Cambridge University Press.CrossRefGoogle Scholar
Lawton, J (2002) The Dying Process: Patients’ Experiences of Palliative Care. London: Routledge.Google Scholar
Lloyd, A, Kendall, M, Starr, JM and Murray, SA (2016) Physical, social, psychological and existential trajectories of loss and adaptation towards the end of life for older people living with frailty: a serial interview study. BMC Geriatrics 16, 176.Google ScholarPubMed
Lloyd, L, Calnan, M, Cameron, A, Seymour, J and Smith, R (2014 a) Identity in the fourth age: perseverance, adaptation and maintaining dignity. Ageing & Society 34, 1–19.CrossRefGoogle Scholar
Lloyd, L, Calnan, M, Cameron, A, Seymour, J, Smith, R and White, K (2011) Maintaining Dignity in Later Life: A Longitudinal Qualitative Study of Older People's Experiences of Support and Care. Bristol, UK: University of Bristol.Google Scholar
Lloyd, L and Cameron, A (2005) Significant life events: developing knowledge for care at the end of life in old age. Journal of Integrated Care 13, 34–39.CrossRefGoogle Scholar
Lloyd, L, Tanner, D, Milne, A, Ray, M, Richards, S, Sullivan, MP, Beech, C and Phillips, J (2014 b) Look after yourself: active ageing, individual responsibility and the decline of social work with older people in the UK. European Journal of Social Work 17, 322–335.CrossRefGoogle Scholar
Lloyd-Williams, M, Kennedy, V, Sixsmith, A and Sixsmith, J (2007) The end of life: a qualitative study of the perceptions of people over the age of 80 on issues surrounding death and dying. Journal of Pain and Symptom Management 34, 60–66.CrossRefGoogle ScholarPubMed
Murray, M and Chamberlain, K (1999) Qualitative Health Psychology: Theories and Methods. London: Sage.Google Scholar
Murray, SA, Boyd, K, Kendall, M, Worth, A, Benton, TF and Clausen, H (2002) Dying of lung cancer or cardiac failure: prospective qualitative interview study of patients and their carers in the community. BMJ: British Medical Journal 325, 929.CrossRefGoogle ScholarPubMed
Nicholson, C, Meyer, J, Flatley, M, Holman, C and Lowton, K (2012) Living on the margin: understanding the experience of living and dying with frailty in old age. Social Science and Medicine 75, 1426–1432.CrossRefGoogle ScholarPubMed
ONS (2006) General Household survey 2005 Office of National Statistics. https://webarchive.nationalarchives.gov.uk/20081014161030/; http://www.statistics.gov.uk/StatBase/Product.asp?vlnk=5756Google Scholar
Pickard, S (2018) Health, illness and frailty in old age: a phenomenological exploration. Journal of Aging Studies 47, 24–31.Google ScholarPubMed
Pound, P, Gompertz, P and Ebrahim, S (1998) Illness in the context of older age: the case of stroke. Sociology of Health and Illness 20, 489–506.Google Scholar
Puts, MT, Shekary, N, Widdershoven, G, Heldens, J and Deeg, DJ (2009) The meaning of frailty according to Dutch older frail and non-frail persons. Journal of Aging Studies 23, 258–266.CrossRefGoogle Scholar
Randall, WL (2012) The importance of being ironic: narrative openness and personal resilience in later life. The Gerontologist 53, 9–16.Google ScholarPubMed
Randall, W, Baldwin, C, McKenzie-Mohr, S, McKim, E and Furlong, D (2015) Narrative and resilience: a comparative analysis of how older adults story their lives. Journal of Aging Studies 34, 155–161.CrossRefGoogle ScholarPubMed
Rowe, JW and Kahn, RL (1997) Successful aging. The Gerontologist 37, 433–440.CrossRefGoogle ScholarPubMed
Rockwood, K, Song, X, MacKnight, C, Bergman, H, Hogan, DB, McDowell, I and Mitnitski, A (2005) A global clinical measure of fitness and frailty in elderly people. Canadian Medical Association Journal 173, 489–495.CrossRefGoogle ScholarPubMed
Sanders, C, Donovan, J and Dieppe, P (2002) The significance and consequences of having painful and disabled joints in older age: co-existing accounts of normal and disrupted biographies. Sociology of Health and Illness 24, 227–253.CrossRefGoogle Scholar
Seale, C (1998) Constructing Death: The Sociology of Dying and Bereavement. Cambridge: Cambridge University Press.Google Scholar
Tanner, D (2007) Starting with lives: supporting older people's strategies and ways of coping. Journal of Social Work 7, 7–30.CrossRefGoogle Scholar
Warmoth, K, Lang, IA, Phoenix, C, Abraham, C, Andrew, MK, Hubbard, RE and Tarrant, M (2016) ‘Thinking you're old and frail’: a qualitative study of frailty in older adults. Ageing & Society 36, 1483–1500.CrossRefGoogle Scholar
Williams, G (1984) The genesis of chronic illness: narrative re-construction. Sociology of Health and Illness 6, 175–200.CrossRefGoogle ScholarPubMed
Williams, S (2000) Chronic illness as biographical disruption or biographical disruption as chronic illness? Reflections on a core concept. Sociology of Health and Illness 22, 40–67.CrossRefGoogle Scholar
Zheng, L, Finucane, A, Oxenham, D, McLoughlin, P, McCutcheon, H and Murray, S (2013) How good is primary care at identifying patients who need palliative care? A mixed-methods study. European Journal of Palliative Care 20, 216–222.Google Scholar