The research study recruited 121 (47%) of the residents from 6 care homes (with no on site nursing provision) in three geographically disparate areas in England. Thirty care home staff and 19 NHS staff were also interviewed. Sixty three older people participated in up to three interviews over the year's data collection of which 23 (5%) of the residents died during the year. A detailed account of the study findings is provided in the final report [24].
The three PIRg members spent between 2-6 hours in the care home during each visit, and a total of approximately 80 hours in care homes over the course of the study. They made between 6 and 18 individual visits to the care homes. The PIRg members visited the care homes mostly at the beginning and end of the study. The PIRg members and researchers spent similar amounts of time in the care homes during the consent and recruitment phase. The researchers carried out all the data collection (interviews, care note reviews) and towards the end the PIRg members (accompanied by researchers) discussed the emergent findings with residents.
There were three areas where PPI involvement directly influenced the outcomes of the study. These were recruitment, governance and safeguarding, and the discussion and interpretation of emergent findings with the older people living in the care homes.
PPI as collaborators in the recruitment process
Recruitment to the study was a staged process, that involved securing care home manager agreement to participate, informal gatherings in the care home to explain the study (e.g. coffee mornings and residents' and relatives' meetings) and conversations with individual residents about possible participation supported by study documentation. All the participant care homes were interested in improving how they provided end of life care for their residents. Interviews with care home staff demonstrated that it was an area of care they found difficult and because of this the majority of staff were willing to support the recruitment process and the involvement of PIRg members. The PIRg members accompanied the researchers to introduce the study to the residents of the care home. To maximise opportunities for participation, sufficient time was allowed and careful attention paid to the particular needs of people with sensory impairments, and those who may have had difficulty communicating. The PIRg members had contributed to the development of the information leaflets; however, it was often necessary to explain further the lengthy information leaflet (as required for research ethics approval and governance) and the consent process. PIRg members answered questions and discussed with residents what the possible advantages and disadvantages of participation might be. These discussions about the study were independent of the process of obtaining consent that the research fellows undertook.
PPI as a safeguard and support to research governance
There was a risk that participants could feel obliged to participate, or become distressed when talking about what had led to them moving to a care home or being asked about their future. PIRg members had a key role in helping to ensure that these risks were acknowledged, that residents who expressed doubts about participation were supported in their decision making and that the team had the capacity to address any unintended consequences arising from inviting people to participate in the study and in the interviews themselves.
During the year of data collection 156 interviews were completed with 63 residents. Originally, it had been intended to involve PIRg members in the interviews; however it was not possible to ensure that the same PIRg member could maintain the continuity of involvement required for the three interviews over the year of data collection. Instead, PIRg members accompanied the researchers to the care homes to help explain the study, sat with residents and helped to minimize the impact of the study on the care home staff by ensuring that they were not taken away from care work when residents wanted to continue talking once an interview had finished. Participation in the study could at times be an emotional experience for residents. On these occasions if an interview was stopped or time was needed after the interview to reflect on the issues raised, PIRg involvement increased the capacity within the research team to address this. On one occasion a participant did not want to talk further but was visibly upset. He had talked with a PIRg member during the recruitment phase of the study and she sat with him, and stayed till he was more composed and, with his permission, told a care worker that the interview had evoked distressing memories. For the majority of the participants however, the staged interviews offered a valued opportunity to talk about living and anticipating dying in a care home and enabled them to build a rapport with members of the research team. PIRg involvement was also a source of support to the research team in what was often emotionally demanding work. For example; one PIRg member whose partner had had dementia provided support to a member of the research team who had had limited experience of talking to people living with dementia.
PIRg members were able to 'fit' into the care homes, talk comfortably with the residents and make sure the residents fully engaged with the consent process. They had the time to explain the study, repeating the necessary information and reinforce key messages that there was no obligation to participate.
Involvement in the development of the research and interpretation of findings
The PIRg members acted as a 'critical friend' to the researchers (questioning assumptions and the research processes). It was a particular challenge to develop information materials that made clear that the focus of the study was the anticipation of dying. PIRg members reviewed all the study support materials (information sheets and topic guides) prior to their submission for ethical review to ensure that information was accessible and unambiguous.
The PIRg members were active discussants in the analysis of the findings, reading through interview transcipts, annotating their reactions and thoughts to what was being said and identifying themes across the interviews and across the care homes; in meetings with the research team these informed the themes developed in the qualitative analysis (undertaken with the data software programme NVIVO). PIRg members also assisted with comments and field notes (in their reflective diaries) on the culture and ambiance of the care homes and commented on the draft final report, and conference presentations.
An unanticipated benefit of PIRg involvement was that they were also a source of continuity working with different researchers at different sites. This meant they could share learning about optimum times to visit the sites and anticipate questions and issues that different participants had raised about the study.
Towards the end of the study, discussion groups were held with residents in the care homes. The purpose was twofold. To discuss emergent findings with residents, exploring to what extent participants recognised and could relate to key themes, and secondly, to consider the impact of participation in the study. The PIRg members helped to develop the discussion guide for these groups and two PIRg members facilitated each group supported by a researcher who acted as note taker. The PIRg members reported back the main findings to the group in their own words and asked residents to comment or further expand. They also shared their own feelings about how they anticipated dying and their responses to the study itself. This approach encouraged residents unfamiliar with a group discussion format to react to statements and to talk about the research openly, possibly because they were discussing their involvement with a third party. PIRg members were of similar age to the residents. The residents joked with some of the PIRg members that they would soon be in the care home themselves. Their involvement appeared to offer different perspective to that created between the researcher/resident, encourage questions in an environment where there were few opportunities for shared discussion.
The focus groups confirmed findings from the interviews such as; wanting more information about fellow residents who had died, and a general feeling that they lacked the opportunity to talk in-depth with anyone at the care homes about subjects that were important to them (not just their views and priorities for the future).
At the dissemination phase, members of the group were co presenters and sole presenters in seminars and conferences to primary care health professionals as well as practitioners and researchers working with and in care homes.
Impact and level of participation on the PIR group members
One PIRg member who had volunteered to visit the care homes, joined the project steering group instead. This was because there were concerns from the research team that her espoused views about assisted care for dying people could be in conflict with the exploratory approach of the study. This member felt she could have made a greater contribution if involved in the care home visits, and this tension highlighted the power relationship between researchers and members of the PIRg. While PIRg members were involved in every stage of the study, from the development of the research proposal to the dissemination and discussion of findings, decision making about the boundaries and range of PIRg participation were not always negotiable. Something that only became apparent once the study began.
Other PIRg members reported personal benefit from participating in the study and expressed a desire to continue to support research with this older age group. Their experiences while taking part in the research strengthened the skill base of the PIRg at the University and provided new insights into the research process.
