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'Am I still here?' : a longitudinal, ethnographic study of living with frailty

Purpose: To explore how older people with complex problems experience and make sense of frailty in their daily lives. Relevance: Frail older people have complex care and support needs that are currently challenging the health and social care system. There is a need for more appropriate models of service provision that can deliver personalised care for frail older people. Although there is an increasing body of literature that has explored the concept of frailty from a biomedical and functional perspective, there is a lack of research-based evidence exploring the personal experience of frailty from an older person’s perspective. Study design: A prospective, longitudinal, ethnographic case study design was adopted. Ten cases were studied over a period of two and a half years. Each case comprised an older person, a community matron and a significant other, such as a daughter. Cases were followed up monthly for a minimum of six months or until death. In total, 56 care visits between an older participant and their community matron were observed and 54 interviews were conducted with older people. Medical and nursing documents were reviewed for each case. A narrative approach to data analysis was undertaken, with identification of common themes within and across cases. Findings: Three themes illuminated the experience of living with frailty. ‘Transitions in health and illness’ details how the older people in this study experienced transitions in health and illness in later life. ‘Dimensions of frailty’ reports perceptions of frailty in later life and accounts of how feeling frail relate to episodes of uncertainty. ‘The provision of health and social care – rhetoric and reality’ explores the inter-relationship between the older person’s world of declining health and the episodic interactions with health professionals. Conclusions: This study offers a number of original contributions to the body of knowledge pertaining to the personal experience of frailty. First, new insights into the interrelationship between frailty and transitions in health and illness have been revealed, particularly how transitions in health and illness contribute to and shape the experience of frailty. Second, frail older people experience temporary moments of ‘liminality’ which are expressed as uncertainty and/or feeling frail. It is in these situations where there is real therapeutic potential in exploring the emotional experiences linked to a frail older person’s interpretation of events. Third, there are challenges to engaging in partnership working with frail older people. In some circumstances frail older people can exercise autonomy and make decisions that are relevant to their own situation. However, often community matrons’ work is framed by a policy of clinical assessment and therefore at times assumptions underpinning the label of frailty can challenge partnership working. These competing demands need to be considered by policy makers, commissioners and providers of community services and practitioners alike. Only then can effective supportive care services be delivered to frail older people.

Identiferoai:union.ndltd.org:bl.uk/oai:ethos.bl.uk:635123
Date January 2014
CreatorsSkilbeck, Julie Kathryn
PublisherUniversity of Nottingham
Source SetsEthos UK
Detected LanguageEnglish
TypeElectronic Thesis or Dissertation
Sourcehttp://eprints.nottingham.ac.uk/27709/

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