From 'conductor' to 'second fiddle': older adult care recipients' perspectives on transitions in family caring at hospital admission

Background: Family carers provide strong support for many older adults, often enabling older adults to remain at home. Little is known about the care recipients’ perspectives of the role and contributions of family carers, particularly when hospital admissions occur as part of end of life care.

Aim: This paper explores the meanings of family caring for care recipients by drawing on older adults’ perspectives about the impact of hospital admission on established family caring relationships.

Design: Exploratory semi-structured qualitative interviews. Key findings reported in this paper emerged from within the inductive research design.

Setting: Interviews were conducted in older adults’ place of residence in northwest England between June 2009 and July 2010.

Participants: Participants were 27 older adults living with heart failure (n = 13) or lung cancer (n = 14), aged 69–89 years (mean 79 ± 4.3 years) and considered by their health professionals to be in their last year of life. In 12 of the interviews, a family carer was also present and made contributions.

Findings: For community-dwelling older adults, family carers are conceptualised as ‘conductors’; making strong contributions to maintaining the rhythm of good care throughout the illness trajectory. Following older adults’ hospital admission, family carers find themselves in the role of ‘second fiddle’, their ability to work with the individual and to make or influence decisions vastly reduced. Despite this, carers continue to invest considerable effort in maintaining continuity in the carer relationship to maximise the individual's wellbeing by identifying needs, filling gaps in provision and advocating on patients’ behalf. Family carers act flexibly to provide continuity, support and take responsibility for older adults’ wellbeing across settings.

Conclusions: Nurses and family carers working together, and greater appreciation of the contribution and role of family carers by health professionals may contribute to improving the quality and continuity of care for older adults.