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      Challenges to conducting research with older people living in nursing homes

      research-article
      1 , , 1 , 1
      BMC Geriatrics
      BioMed Central

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          Abstract

          Background

          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.

          Methods

          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.

          Results

          Challenges included taking informed consent (completing reply slips and having a 'reasonable' understanding of their participation); finding opportunities to conduct interviews; involvement of care home staff and residents' families and trying to maintain privacy during the interviews. Most residents were positive about their participation in the study, however, five had concerns either before or during their interviews. Although 15 residents seemed to feel free to air their views, three seemed reluctant to express their opinions on their care in the home.

          Conclusion

          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.

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          Most cited references16

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          Recruitment of frail older people to research: lessons learnt through experience.

          With the emphasis on the need for clinical governance and evidence-based practice in the healthcare industry there is increasing pressure on researchers to provide tangible research evidence of the effectiveness of new treatments, interventions and services. Recruiting an adequate size of sample is an important factor in the success or otherwise of a study to answer the research question. Difficulty in the recruitment of older people to research is widely acknowledged. However, much can be achieved to maximize the success of this process. This paper describes and explores our experience of recruiting frail, older people to research, with particular emphasis on ensuring quality in the process of research related to ethical practice. Recruitment of frail older people to research can be a complex process in which the awareness and integrity of the researcher is key in upholding the principle of nonexploitation. It is important not to underestimate this difficulty and to ensure that the data collection period is sufficient to recruit adequate numbers. There is a need to continue to develop and refine recruitment skills and strategies to maximize the involvement of frail older people to research while protecting their right to refuse.
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            Dignity and the challenge of dying in nursing homes: the residents' view.

            human dignity is discussed in almost all public debates on the care of the dying, as well as in international policies for health and social care of older people. Because nursing homes are gaining importance as places where residents live out their lives in modern western societies and since there is evidence that end-of-life care in nursing homes lacks quality, there is a growing discussion on introducing improved end-of-life care in these institutions. In order to accomplish this, the view of those who are most affected is of utmost importance. to explore the meaning of dignity with regard to end-of-life issues from the perspective of older nursing home residents in western Germany. this qualitative study is based on the Grounded Theory Approach, and the design included three steps of data generation; narrative interviews with residents of nursing homes constitute the main data pool (n = 20) of the results presented in this paper. Theoretical sampling was aimed at maximising the variety of organisational as well as residents' characteristics. Analysis of the transcripts was supported by Atlas/ti program and followed several different coding procedures and aimed at generating a concept of dignity. dignity was differentiated into intrapersonal dignity and relational dignity, socially constructed by the act of recognition. Social relations and encounters are a prerequisite for relational dignity, which underlines the vulnerability of nursing home residents' who increasingly lack social networks. A broad spectrum of attitudes and behaviour, which aimed at recognising dignity, was bundled under the category 'not being a burden'. In this light, dignity was challenged most by the threat of illness and having care needs. This was fostered by the perception of insufficient care in the nursing homes. In the light of this concept, death with dignity meant 'death at the right time', though the residents in the sample did not want to comment on the time of death, other than aspects like (i) being active to the very last, (ii) respecting one's will and being allowed to die, (iii) not being in pain, (iv) being amongst persons close to one (valediction and showing respect). the study emphasizes the high vulnerability of nursing home residents with regard to dignity. They place their dignity under the constraints of the need for help and care into question. This appears alarming, if one does not manage to, with the help of different ethics, obtain a new perspective on these phases of life. It is evident that the understanding of dignity is not solely individualistic and personal, but rather has a close relationship to social ideas of value, which ultimately influence the basic requirements of institutions in which 'frail old people' live.
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              Living and dying with dignity: a qualitative study of the views of older people in nursing homes.

              most older people living in nursing homes die there. An empirically based model of dignity has been developed, which forms the basis of a brief psychotherapy to help promote dignity and reduce distress at the end of life. to explore the generalisability of the dignity model to older people in nursing homes. qualitative interviews were used to explore views on maintaining dignity of 18 residents of nursing homes. A qualitative descriptive approach was used. The analysis was both deductive (arising from the dignity model) and inductive (arising from participants' views). the main categories of the dignity model were broadly supported: illness-related concerns, social aspects of the illness experience and dignity conserving repertoire. However, subthemes relating to death were not supported and two new themes emerged. Some residents saw their symptoms and loss of function as due to old age rather than illness. Although residents did not appear to experience distress due to thoughts of impending death, they were distressed by the multiple losses they had experienced. these findings add to our understanding of the concerns of older people in care homes on maintaining dignity and suggest that dignity therapy may bolster their sense of dignity.
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                Author and article information

                Journal
                BMC Geriatr
                BMC Geriatrics
                BioMed Central
                1471-2318
                2009
                24 August 2009
                : 9
                : 38
                Affiliations
                [1 ]King's College London, Department of Palliative Care, Policy & Rehabilitation, Weston Education Centre, Cutcombe Road, London SE5 9RJ, UK
                Article
                1471-2318-9-38
                10.1186/1471-2318-9-38
                2745410
                19703277
                14e41342-aa06-47b3-94b5-2ba15f6ddd7d
                Copyright © 2009 Hall et al; licensee BioMed Central Ltd.

                This is an Open Access article distributed under the terms of the Creative Commons Attribution License ( http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

                History
                : 24 November 2008
                : 24 August 2009
                Categories
                Research Article

                Geriatric medicine
                Geriatric medicine

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