Doing Research for a Living Text

Although older people are increasingly cared for in nursing homes towards the end of life, there is a dearth of research exploring the views of residents. There are however, a number of challenges and methodological issues involved in doing this. The aim of this paper is to discuss some of these, along with residents' views on taking part in a study of the perceptions of dignity of older people in care homes and make recommendations for future research in these settings. Qualitative interviews were used to obtain the views on maintaining dignity of 18 people aged 75 years and over, living in two private nursing homes in south east london. Detailed field notes on experiences of recruiting and interviewing participants were kept.

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Although we experienced many challenges to conducting this study, they were not insurmountable, and once overcome, allowed this often unheard vulnerable group to express their views, with potential long term benefits for future delivery of care. In many countries older people are increasingly cared for in nursing homes or other long term care facilities towards the end of life. Three systematic reviews of research conducted in these settings have highlighted the need for empirical research in this area 1 – 3 . In particular, the need to represent the views of residents and their families has been highlighted 2 . There are, however, a number of challenges and methodological issues involved in conducting research in care homes for older people, which can restrict the conduct of research and prevent the views of residents from being heard. Older people often experience a range of symptoms, including pain, fatigue and hearing or visual problems, which can severely impact all aspects of the research process, including participant recruitment, data collection, quality and analysis 4 . The increasing likelihood of cognitive impairment and dementia amongst older people is a particular challenge when it comes to taking informed consent.

Whilst the importance of informed consent is widely acknowledged, the circumstances under which it is obtained amongst older people remains contentious 5 . Although it has been shown that older people may readily agree to participate in research studies, either to increase their human contact, or for the benefit of diversion, the practical aspects of conducting research in this environment can present a unique set of challenges 6 . There have also been concerns over institutionalised participants feeling an overwhelming reluctance to criticise health care professionals or feeling coerced to participate in research as a 'captive audience' 7 . In general however, it has been shown that older people at the end of life regard their participation in research as a valuable contribution to the future lives of others and that such participation can have substantial therapeutic benefits 8.

Poor staff compliance with research protocols, inflexibility of established routines, policies and practices in the nursing home environment, together with the potential 'gate keeping' role of family members could create substantial obstacles to the research process. To fully represent the views of older people in care home settings, research design must be sufficiently robust to meet the strict ethical standards for vulnerable groups which govern some of the following specialist challenges equity of participant selection, informed consent, confidentiality, risk/benefit ratio and the special protection of resident's rights 6. One area, which is likely to be of great concern to residents of care homes, is preserving dignity 10 .

The aim of this paper is to highlight some of the methodological challenges we experienced whilst conducting a study of the perceptions of dignity of older people living in nursing homes with a view to describing the lessons learned, responses and strategies developed and recommendations for future research study design and delivery. We used qualitative research methods to obtain the views on dignity of people aged 75 years and over, living in two private care homes in south east london 11 . Following local ethical and research and development approval of our protocol king's college hospital research ethics committee: ref 07/q0703/22 , two private nursing homes in south east london were approached to participate in the study. The exclusion criteria were, being unable to speak english or to provide informed consent, or too ill or distressed to take part in the study. Since we did not want to exclude the views of the oldest residents, we placed no upper age limit in eligibility. Care home managers identified residents who they felt were eligible for the study.

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Since we planned to interview 20 residents, we randomly selected 15 eligible residents from each nursing home. The managers gave the selected residents our information sheets 'expression of interest' forms all printed in large font. As some residents were later found to be unable to provide informed consent and a substantial number declined to take part, it was necessary to repeat this process several times to try to achieve the desired sample size. Managers gave the completed expression of interest slips to the researcher sl , who visited each home a week later to obtain written informed consent from those residents interested in taking part.

Potential participants were required to have a 'reasonable' understanding of their participation in the study before informed consent was taken. They needed to i recall receiving the patient information sheet, ii give a brief account of the study and i describe their involvement in the study. Of the 86 residents in the two homes 23 27% were excluded by the managers, 39 45% did not return expression of interest forms, and six 7% were unable to understand their participation in the study. All but one was female, all but one was white british, and all had multiple co morbidities. Barthel scores 12 ability to perform activities of daily living ranged from total dependence 0 to nearly maximum independence 90.

These were conducted by sl, who already had considerable interviewing experience, including interviews with older people and patients with serious illnesses. Interviews were in depth and semi structured, exploring a variety of issues including factors which either supported or undermined the participants' sense of dignity. Interview topics were closely based on recent research conducted with canadian cancer patients 13 and lasted 45–75 minutes.