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.

A comparison of strategies to recruit older patients and carers to end-of-life research in primary care.

BACKGROUND: Older adults receive most of their end-of-life care in the community, but there are few published data to guide researchers on recruitment to studies in primary care. The aim of this study was to compare recruitment of patients and bereaved carers from general practices in areas with different research network support, and identify challenges in obtaining samples representative of those in need of end-of-life care. METHODS: Comparative analysis of recruitment from general practices to two face-to-face interview studies concerned with 1) carers' perceptions of transitions between settings for decedents aged over 75 years and 2) the experiences of older patients living with cancer at the end-of-life. RESULTS: 33 (15% of invitees) patients and 118 (25%) carers were interviewed. Carers from disadvantaged areas were under-represented. Recruitment was higher when researchers, rather than research network staff, were in direct contact with general practices. Most practices recruited no more than one carer, despite a seven fold difference in the number of registered patients. The proportion identified as eligible for patient interviews varied by a factor of 38 between practices. Forty-four Primary Care Trusts granted approval to interview carers; two refused. One gave no reason; a second did not believe that general practitioners would be able to identify carers. CONCLUSION: Obtaining a representative sample of patients or carers in end-of-life research is a resource intensive challenge. Review of the regulatory and organisational barriers to end-of-life researchers in primary care is required. Research support networks provide invaluable assistance, but researchers should ensure that they are alert to the ways in which they may influence study recruitment.

Older adults' experiences of transitions between care settings at the end of life in England: a qualitative interview study.

CONTEXT: Providing care that is shaped around the needs of patients, carers, and families is a challenge in the last months of life, as moves between home and institutions may be frequent. Despite this, there have been few studies of end-of-life transitions in the U.K. OBJECTIVES: To explore older adults' experiences as they move between places of care at the end of life. METHODS: In-depth qualitative interviews and thematic analysis of the data were performed. Thirty adults aged between 69 and 93 years took part. All were judged by their physicians to be in the last year of life, diagnosed with heart failure (13), lung cancer (14), and stroke (3). Sixteen participants were from the lowest socioeconomic groups. RESULTS: Four themes were identified from the data relating to 1) the prioritization of institutional processes, 2) support across settings, 3) being heard, and 4) dignity. As they moved between different settings, much of the care received by older adults was characterized by inflexibility and a failure of professional carers to listen. Liaison between and within services was not always effective, and community support after a hospital admission was perceived to be, on occasions, absent, inappropriate, or excessive. CONCLUSION: Qualitative study of transitions provides valuable insights into end-of-life care, even in countries where there are few financial barriers to services. This study has highlighted a need for continued attention to basic aspects of care and communication between professionals and with patients.

Funding health and social services for older people - a qualitative study of care recipients in the last year of life.

OBJECTIVES: This study explores the views of older adults who are receiving health and social care at the end of their lives, on how services should be funded, and describes their health-related expenditure. DESIGN: Qualitative interview study. SETTING: North West England. PARTICIPANTS: 30 people aged 69-93 years, diagnosed with lung cancer, heart failure or stroke and judged by health professionals to be in their last year of life. Sixteen participants lived in disadvantaged areas. MAIN OUTCOME MEASURES: Views of older adults on funding of services. RESULTS: Participants expressed a belief in an earned entitlement to services funded from taxation, based on a broad sense of being a good citizen. Irrespective of social background, older people felt that those who could afford to pay for social care, should do so. Sale of assets and use of children's inheritance to fund care was widely perceived as an injustice. The costs of living with illness are a burden, and families are filling many of the gaps left by welfare provision. People who had worked in low-wage occupations were most concerned to justify their current acceptance of services, and distance themselves from what they described as welfare 'spongers' or 'layabouts.' CONCLUSIONS: There is a gap between the health and social care system that older adults expect and what may be provided by a reformed welfare state at a time of financial stringencies. The values that underpinned the views expressed--mutuality, care for the most needy, and the importance of working to contribute to society--are an important contribution to the debate on welfare funding.

Breaking bad news sensitively: what is important to patients in their last year of life?

AIM: To understand patients' perspectives on how a diagnosis of a life-limiting illness was first communicated to them. STUDY DESIGN: In-depth qualitative interviews with 50 people ranging in age from 30 to 93 years, diagnosed with cancer (31), heart failure (13), stroke (three) or neurological conditions (three) and thought by the responsible health professional to be in the last year of life. Participants from two areas of Northern England were recruited through specialist nurses or hospital consultants and interviewed in their current place of residence. Transcribed data were analysed using Framework. RESULTS: Patients were most likely to recall the pace and clarity with which bad news was conveyed. A direct approach was most common, without much prior warning for the patients. Direct information was usually received well when the patient knew the health professional and when it had been suggested that the patient should be accompanied to the appointment. Some professionals did work to set the scene for the eventual news, with a gradual build-up of information, and narrowing down of options. This approach was perceived as appropriate and sensitive. People with heart failure had engaged in much less discussion about their condition, and most did not recall a specific conversation with their doctor about their prognosis. CONCLUSIONS: Bad news is not always broken in a sensitive way, despite considerable efforts to address this issue. Relatively minor changes to practice could improve the patient experience: greater preparation, provision of sufficient time in consultations and cautious disclosure for new patients.