Partnering with older people as peer researchers

Abstract Background The term peer researcher describes the role of a person who has similar characteristics and can identify with the participant group in a research study. This paper describes the methodological approach and experiences of older people who were peer researchers on a study that explored the lived experience of people with dementia who lived in technology‐enriched housing. Methods Nine people responded to a public recruitment campaign through nongovernment organisations using multiple methods such as seniors' forums, development officers and social media. Mandatory training across 2 days was provided and seven peer researchers successfully completed the training. A total of 22 interviews were undertaken by the seven peer researchers. The data collected from the training feedback proforma (N = 7), interview debrief forms (N = 22) and final evaluation forms (N = 5) were analysed using content analysis and triangulated. Results Five core themes emerged from the data using a content analysis approach to examine the peer researchers' experience: (1) skill development; (2) recognition of competencies; (3) connection; (4) supplementary information; and (5) the triad dynamic. Conclusions Considerations to enhance the peer researcher experience emerged including enhanced communication training, consideration of the optimum number of peer researchers to balance workload and identification of the characteristics that enable people to connect as peer researchers. Future research should consider the impact that experiential skill development has on the data collected. Public Contribution Older people conducted qualitative interviews as peer researchers with people living with dementia to cocreate knowledge.


| INTRODUCTION
The lived experience of people living with dementia has often been overlooked in research. 1 For many years, researchers have engaged with their carers, as proxy, citing difficulties gaining ethical approval and consent, 2,3 challenges with language production 4 and the stigma that people living with dementia experience associated with the validity of their contribution in research interviews, all negatively impacting research participation. 5 Ethics committees have traditionally been strict gatekeepers, and approval for research involving people living with dementia has been difficult to obtain. 6 Yet, engaging people living with dementia in research gives their experience value and a voice to be heard as valued members of society. 7 There is no doubt that innovative methods are required to enhance the meaningful inclusion of people living with dementia in research. 5  A person-centred theoretical approach underpinned the methodology, 8 and the voice of older people in the project was pursued as part of an involvement and coproduction agenda. Consistent with this, the cocreation of knowledge with older people in the role of peer researchers was considered the optimal approach. Peer researchers interviewed people living with dementia in TESA to enhance the authenticity of conversations, generate a relaxed interview setting and develop rapport. The aim was to increase the voice of people living with dementia in the research findings.
The term 'peer researcher' describes the role of a person who has similar characteristics and can identify with the participant group in a research study. 9 Many different terms are used throughout the literature to describe this role including 'peer researcher', 'coresearcher' and 'lay researcher'. 10 Typically, peer researchers have no prior training in research and work collaboratively with a research team on various tasks such as recruitment, data collection, data analysis and dissemination. This approach creates the conditions for peer researchers to be empowered, through capacity building, to use their experiential knowledge in the research project. 11 The aim of the partnership between peer researchers and the research team is to develop a cooperative, colearning, respectful relationship that fosters mutuality, wisdom and respect. 12 Achieving a balance in the partnership to develop an appreciation of the knowledge and the valuable contribution that peer researchers bring is essential to the success of their role. 13 The peer researcher methodological approach sits in participatory action research, 13 user involvement 14 and in the communitybased participatory research sphere. 15 The approach has been adopted with various populations as peer researchers such as children and young people, 16,17 drug users, 18 people from shared religious communities, 19 individuals living with intellectual disabilities, 20 people living with mental health conditions, 15 long-term illnesses such as diabetes 21 and in student populations. 22,23 The role of the peer researcher varies considerably across the literature. 24 It is not uniform and differs depending on the population and the research project. In research interviews, shared characteristics and understanding between the participant and the peer researcher are considered to provide a relaxed interview environment that can lead to deeper dialogue and rich data collection. 25,26 This can lead to a more open interview, whereby the participant finds it easier to share and develop a strong rapport. 15 Within dementia research, peer researchers were found to build on shared connections with participants through mutual understanding and empathy. 27 In addition to benefitting the research process, this approach has also been found to yield positive outcomes for peer researchers. It can promote the inclusion of people who otherwise can feel excluded or of little value in society. 28 Involvement has the ability to challenge stereotypes by emphasising the skills of excluded groups, such as older people. 25,29,30 Older people bring with them experiential knowledge based on a lifetime of interacting in society, 26,[30][31][32] and in doing so, bring a supply of skills and expertise. 25 This in turn can contribute to the peer researcher's confidence, self-esteem and sense of purpose. 33 There are many challenges with peer research from the perspectives of the peer, the research participant and the wider research team. It can be time-consuming, expensive and difficult to maintain the research agenda. 25,28,34,35 There is ambiguity with the term 'peer' and what it means to have a shared identity and characteristics with the participant. 36 Opportunities for peer researchers are often unequal, such as opportunities for data collection, and it can be difficult to establish an appropriate level of involvement. 28 Additionally, the academic researcher and research team need to adjust their research approach to ensure a respectful and mutual relationship. 37 Academic researchers reported feeling disconnection from the data collection as a direct result of engaging peer researchers. 19 There is no doubt that it is challenging interviewing people living with dementia, aiming to ensure an inclusive approach to maximise the person's ability to comprehend and engage in the process. 38 The qualitative interview can be impacted by the interviewee's ability to comprehend and articulate their views. 39 The peer researcher methodology emphasises the development of rapport and connection, 15,27 an essential component of the interview with people living with dementia. 40 Additionally, opportunities for innovative approaches including peer support in the peer research approach can yield rich data from people living with dementia. 5 The peer researcher methodological approach was adopted to undertake qualitative interviews within the TESA-DRI project. The purpose of this paper is to describe the methodological approach and enhance understanding of the peer researchers' role from the perspectives of an older person interviewing people living with dementia.

| Aim of the paper
This study aimed to examine the experiences and outcomes of older people as peer researchers undertaking face-to-face interviews with people living with dementia.

| Recruitment
One of the grant holders in the project, Engage With Age, a was a nongovernment organisation (NGO) working in the community to reduce loneliness and lend a voice to older people. One researcher (J. D. L.) was employed by this organisation for the duration of the project to ensure that the perspectives of older people were embedded in this study. Older people were recruited as peer researchers to engage with people living with dementia who were participants in the TESA-DRI project. As eligibility to the partner NGO services starts at 55 years, this was adopted as peer researcher eligibility. Therefore, people living with dementia would be able to visually relate to being of the same generation as the peer researchers. Peer researchers were required to have personal experience of supporting a person living with dementia so that they could harness this experience in the development of their communication skills for the interviews. Engage With Age, with an established track record of working with older people, also had previous experience of coresearch with older people.
Recruitment was undertaken through this organisation with external support from two NGOs. To avoid recruitment bias of peer researchers, a wide net was cast in the hope of recruiting a diverse group of older people. Development officers, senior's forums, one-to-one contacts and social media were all used as recruitment methods. The leaflet to support recruitment is provided in the Supporting Information Materials. Interested individuals contacted the researcher and candidates who fulfilled the above criteria were invited to meet to discuss the role. During this meeting, the expectations for the project were set out including the characteristics required for the peer researcher role, for example, interpersonal skills. A cooling-off period of 1 week was given to the peer researchers.

| The peer researcher approach
The peer researchers' engagement approach is set out in Figure 1. All peer researchers were required to attend a mandatory 2-day training course. Post-training self-evaluations were completed to identify any gaps in their knowledge and establish how they were feeling about the role. Furthermore, peer researchers indicated their availability, the locations they were willing to travel to and how best they wanted to be contacted.
The face-to-face interviews were organised by the first author.
The peer researcher met (J. D. L.) an hour before the scheduled interview if they were not travelling together. In most cases, the peer researchers were collected and dropped home to have time with the project researcher (J. D. L.) to recap beforehand and debrief after the interview. Peer researchers were not paid, but travel expenses were covered, and lunch was provided if the interviews were undertaken during this time. Each interview protocol began in the same manner.
The project researcher (J. D. L.) introduced the project, herself and the peer researcher. An opportunity was given to the tenant to consent to taking part in the interview again and to consent to the use of a voice recorder; this adhered to our adoption of process consent for the research participants with dementia. 42 The roles of the two researchers were that the peer researcher took the lead in the interview, asking questions based on the topic guide. Jean Daly-Lynn did not engage in questioning unless specifically invited to do so by either the peer researcher or the participant. After each interview, the peer researcher had an 'emotional check-in' with the researcher, or as Buffel 25 refers to as a 'safe space', to ensure that the interview had not triggered an emotional response and they were asked to fill in a debrief form ( Figure 1B).
Once all interviews were complete, a peer researcher meeting was convened to discuss the outcome of the interviews, validate the data analysis and evaluate the experiences of peer researchers in the project. During this session, peer researchers were given time to read through their interview transcriptions to recap on their experience.
Group discussions were held around the transcriptions, the interview experience and the major themes discovered. The project researcher (J. D. L.) introduced the coding scheme that was developed during the analysis to identify any discrepancies. Peer researchers were asked to consider the major themes from their point of view, before introducing the thinking of the research team and the similarities and differences were discussed. An evaluation form of the peer researcher experience was completed following this meeting-https://setrust. hscni.net/wp-content/uploads/2019/09/communicating-effectivelywith-a-person-with-a-dementia-Feb-2019.pdf.

| Training
Training to ensure that peer researchers have the necessary skills to undertake their role was essential. 43 The development of skills and capacity building for the peer researcher role can be viewed as an investment for the project. 18 For the research team to fulfil a https://engagewithage.org.uk/ DALY LYNN ET AL.
| 1881 their research mandate and ensure that peer researchers have a role that is purposeful in the project, and undertaken in an ethical manner, training was considered a mandatory requirement.
The responsibility was on the research team to ensure that peer researchers had the skills and confidence to undertake their role. and encourage and engage communication. 44 Principles of person-centredness framed the training, treating people as individuals, respecting their rights to be a person, building mutual trust and understanding and developing positive relationships. 8,45 This was achieved by outlining the meaning and implementation of these principles, and ensuring that the principles were role modelled between the research team and peer researchers, and within all aspects of the project. Although it was acknowledged that peer researchers had personal experience of dementia, assumptions of explicit or implicit knowledge were set aside to ensure that the uniqueness of each individual living with dementia was felt, and they were treated with dignity and respect. This is central to the personhood of people living with dementia. Additionally, the ethical principles of 'confidentiality, consent, empathy and well-being' were fundamental in the training. 25 A large allocation of time was assigned to practicing interview skills in dyads using the topic guide. Finally, time was spent reflecting on the training, and the practice interviews to become familiar with the process of self-analysis and identification of skills to support development.  Figure 1C was used to frame the reflective process. Peer researchers were also sent an electronic copy and were given the option of posting the completed proforma back to ensure anonymity.

| Data analysis
The research data reported on in this paper collected from the training feedback proforma (N = 7), interview debrief forms (N = 22) and final evaluation forms (N = 5) were analysed using a content analysis approach and triangulated. Additionally, the project researcher (J. D. L.) reflected upon a journal that she wrote throughout the training and during the data collection and analysis. Demographic data were extracted and compiled in Table 1 to outline the profile of the peer researchers. Content analysis was used to analyse the rich descriptive text as it is suitable for the analysis of large amounts of textual data. 46 This process involved familiarisation with the data, followed by the categorisation and coding of the text. The text in each of the forms was coded and these codes were compared and contrasted. The emergent categories were reflected upon and checked to ensure sufficient strength. To ensure the reliability and trustworthiness of the data, multiple data collection forms were reflected upon, multiple researchers reflected and discussed the scientific aspects of the findings and themes were described using the words of the peer researchers.
Additionally, a peer researcher and author (M. W.) contributed to and approved drafts of this manuscript.

| RESULTS
The profile of the peer researchers is presented in Table 1. Peer researchers were given the ID code of PR (peer researcher) and assigned a number each ranging from 1 to 7. A total of 22 interviews were conducted by 7 peer researchers, ranging from 1 to 6 interviews. The interview length averaged at 42 min and ranged from between 11 and 93 min. Typically, there was a 3-4 months gap between interviews. In terms of the interview participants, 2 of the 22 people interviewed were male. The mean age of people living within the 9 housing schemes where tenants were recruited from was 79 years of age (ranging between 51 and 97 years of age). To move into the accommodation, tenants were required to have a diagnosis of dementia and no longer able to live independently in the community.
Both PR2 and PR5 became disengaged from the project and had completed one and two interviews, respectively. They were contacted through telephone and email, and it was not returned. Both PR2 and PR5 completed training feedback and three interview debriefs that were included in the data. The remaining five peer researchers completed the final evaluation and felt that the experience brought value to their lives, the training was sufficient preparation for their role and would be interested in volunteering in a similar role again.

| Skill development 'Learning on the job'
Peer researchers widely reported positive experiences. One person stated that they felt 'genuinely invigorated' (PR2.1), but disengaged from the project after this one interview. Three peer researchers provided care at home for a family member living with dementia.
Additionally, the same peer researchers had worked in the community sector and were comfortable with their interview skills quickly. Therefore, this personal and professional experience may have been an asset to this role. Interestingly, the two peer researchers who disengaged from the project had backgrounds in finance and DALY LYNN ET AL.   engineering. The more interviews undertaken, the more confident and skilled the peer researchers felt. It should be noted that peer researchers undertook between 1 and 5 interviews each, with a 3-4month gap between interviews. With seven peer researchers, 32% of the interviews were 'first' interviews. The training was considered to be good preparation for the role, although it was widely acknowledged that there was a certain amount of 'learning on the job' (FE1).
Comments ranged from prescriptively reading the topic guide questions at the beginning to a more fluid natural approach to the conversation as more skill was gained. While the topic guide can provide support and confidence to the peer researcher, it also has the po- On the other hand, another peer researcher felt that they 'could relate (to) as a "peer" i.e., someone in later life'; however, their attempt to find a connection would lead the interview significantly off its focus. However, lack of funding opportunities meant that the peer researchers in this project did not continue their role.
Communication challenges were a key finding within this study. This is where the focus is required in both recruitment and training.
First, to ensure that the peer researcher is aware, they will be asked to share their personal experiences and, second, to be able to share in an appropriate way that facilitates connection and does not compromise the data collection.
It is evident that peer researchers need excellent interpersonal skills. 51  An essential aspect of ethical considerations is to keep all parties physically and psychologically safe. 55 The 'triad dynamic' was reported as supportive by peer researchers and a requirement for ethical approval. The triad enabled the academic researchers to monitor consent in line with process consent. 42 The ethical implications of a novice researcher engaging independently with a person living with dementia require further consideration. On the other hand, it could be viewed as a paternalistic approach and disempowering the peer researcher. As the peer researchers were learning on the job, they valued the triad in the interview setting. It is possible that the researcher present in the interviews could have impacted on the interviewee-interviewer relationship. 26 It is possible that peer researchers felt observed and did not engage in questioning the way they would have had the academic researcher not been present. Within the project, it enabled the academic researcher to feel connected to the data collection and also removed the implications of having second-hand data as reported in previous research. 18 Therefore, the triad dynamic created supportive relationships between academic and peer researchers as well as a closeness to the data to support analysis. Important steps are needed to consider moving away from this approach in future research, for example, readiness of ethics committees, numerous pilot interviews to cement skills during the learning on the job phase, robust distress protocols and funding to support the commitment of the peer researcher into the data analysis phase and beyond. Peer researchers working in pairs could also be a solution to ensure safeguarding and reduce the feeling of being observed by the academic researcher.
It is important to note some of the limitations in the present paper. First, the nature of the data sources analysed lacked depth.
The data from the interviews with people living with dementia were Additionally, further consideration needs to be given to the impact on the quality of the data. For example, analysis of the transcripts with a focus on the peer researchers' questions and prompts could provide a more accurate indication of skills and future training needs.
In conclusion, the findings highlighted the satisfaction that older people recruited as peer researchers gained from participation in research and from acquiring the skills needed to undertake data collection, in addition to the significant contribution they made. The peer researcher's role was accessible for older people; however, further training in communication, more involvement from people living with dementia and a stronger connection to the project would enhance this experience. It raises several issues that require further consideration such as exploring the optimum number of peer researchers required to balance between overburden and opportunity, identification of interpersonal skills required to connect with people and the impact of interview skills developing over time on the quality and consistency of the data. This study builds on previous findings and highlights directions for future research to develop this methodological approach in gerontology.