Talking about living and dying with the oldest old: public involvement in a study on end of life care in care homes

Abstract

BackgroundPublic involvement in research on sensitive subjects, such as death and dying, can help to ensure that questions are framed to reflect the interests of their peers, develop a shared understanding of issues raised, and moderate the often unequal power relationship between researcher and participant. This paper describes the contribution and impact of older members of a Public Involvement in Research group (PIRg) to a study on living and dying in care homes.MethodsA longitudinal study, with a mixed method approach, its aims were to capture key experiences, events and change over one year, of older people resident in participating care homes in the East of England. Residents were interviewed up to three times and their case notes were reviewed four times over the year. Interviews were semi structured, and recorded. Four members of a Public Involvement in Research group (PIRg) contributed to preliminary discussions about the research and three were involved with many of the subsequent stages of the research process including the facilitation of discussion groups with residents.ResultsThere were three areas where the involvement of the Public Involvement in Research group (PIRg) positively influenced the study process. These were recruitment, governance and safeguarding, and in collaboration with the residents in the care homes, the discussion and interpretation of emergent findings. PIRg members were of similar age to the residents and their involvement provided different and often more reflective insights of the significance of the findings for the participants. There were examples where decision making about the range of PIRg participation was not always negotiable, and this raised issues about power relationships within the team. Nevertheless, PIRg members expressed personal benefit and satisfaction through participating in the research and a commitment to continue to support research with this older age group.ConclusionsThe contribution of the PIRg supported a successful recruitment process that exceeded response rates of other studies in care homes. It safeguarded residents during the conduct of research on a sensitive topic and helped in validating the interview data gathered by the researchers through the discussion groups facilitated by the PIRg. There were power differentials that persisted and affected PIRg participation. The study has showed the value of developing job descriptions and a more formal means of setting out respective expectations. Future research may wish to elicit the views of focal participants in such studies about the mediation of research by public involvement in research.

Primary care-led dementia diagnosis services in South Gloucestershire: Themes from people and families living with dementia and health care professionals

“…The use of peer researchers has been used in other areas of mental health research (Rose, Leese, Oliver et al 2011) and in studies with care home residents (Goodman, Mathie, Cowe et al 2011) suggesting that it does have a role to play in dementia research as well.…”

ReseArch with Patient and Public invOlvement: a RealisT evaluation – the RAPPORT study

“…70 PPI input is also seen as having importance in shaping the recruitment strategy by bringing local knowledge, 79 or important links to the target population. 80 There are also examples where PPI has contributed to accessing marginalised and seldom heard populations 81,82 and those with rare conditions, 83 and played a role in promoting acceptance of researchers by previously sceptical communities. 84 More active involvement in mainly qualitative data analysis has been identified as improving interpretation of findings through the drawing out of relevant themes.…”

“…92 There is also some suggestion that lay co-researchers have a role to play in helping safeguard potentially vulnerable participants. 82 The impact of PPI has a moral dimension in the reported outcomes for service users and the public involved in the study. This includes an increased sense of self-worth, 87,93 peer support, 94 improved quality of life 95,96 and acting as a stepping stone to employment.…”

“…However, there was no evidence on how this affected research outcomes. This effect of PPI on study recruitment has been reported widely elsewhere, 70,[78][79][80][81][82][83][84][85][86]88 but the range of case studies within the RAPPORT study allows the specific components to be teased out ( Figure 19). …”

“…Recruitment was the most frequently mentioned area in which PPI was seen as having a 'visible' impact, and is a recurring focus in the literature. 70,[78][79][80][81][82][83][84][85][86] Recruitment processes were part of the overall research design and provided a natural entry for PPI. Case studies had evidence of PPI impact on other elements of the design such as choice of outcome measures, ensuring tools were participant-sensitive or involvement in developing the intervention.…”