The impact of using peer interviewers in a study of patient empowerment amongst people in cancer follow‐up

Abstract

BackgroundA range of benefits have been reported from engaging peer interviewers in qualitative interviews, but little systematic evaluation exists to assess their impact on both process and outcomes of qualitative interviews in health research.ObjectiveTo investigate the impact of involving patient representatives as peer interviewers in a research project on patient empowerment.Design18 interviews were carried out as part of the wider study, seven by the academic researcher alone and eleven jointly with a peer interviewer. The interviews were analysed quantitatively and qualitatively to explore potential differences between interviews conducted by the researcher alone and interviews conducted jointly by the researcher and the peer interviewers. A phone evaluation of the peer interviews was carried out with the research participants, and notes were thematically analysed to understand their experiences.ResultsDifferences were identified between the academic researcher and the peer interviewers in the types of questions they asked and the degree to which personal narrative was used in the interview. Peer interviewers varied significantly in their approach. Research participants were positive about the experience of being interviewed by a peer interviewer. No firm conclusions could be made about impact on outcomes.Discussion and conclusionsThe uniqueness and complexity of qualitative interviews made it difficult to provide any firm conclusions about the impact of having peer interviewers on the research outcomes, and the benefits identified from the analysis mostly related to the process of the interviews. Benefits from using peer interviewers need to be considered alongside relevant ethical considerations, and available resources for training and support.

Partnering with frail or seriously ill patients in research: a systematic review

“…The number of patients in the studies ranged from one [64] to 168 [68] with a median of 16 patients. There were 11 (37%) studies where patients were engaged as a group with caregivers and/or other stakeholders (e.g., ex-patients, survivors, patient representatives/ advocates, or members of the public) [7,24,46,52,53,[57][58][59][60][61]72].…”

“…Four studies (13%) described patient roles during key stages of the research process, rather than across the research cycle [60,65,69,70]. Patients participated in activities at the execution stage of the research cycle, where they piloted research tools, served as peer interviewers, assisted in other forms of data collection, or interpreted data sets [60,65,69,70].…”

“…Facilitators were researchers' willingness to share decision-making with patients as essential to partnering with patients (10/30) [7,24,48,50,51,53,56,[59][60][61]. Another facilitator was researchers' knowledge and expertise of patient engagement practices as vital to mitigating potential harms of engagement(9/30) [7,24,47,51,54,57,59,62,66].…”

Children’s Involvement in Research—A Review and Comparison with Service User Involvement in Health and Social Care

“…This is supported by the present review, which illustrated significant variation in the information provided by researchers. In the literature on service user involvement a similar debate about 'impact' has taken place (see for example Gillard et al 2010 andJørgensen et al 2017b), and authors have argued for a more systematic reporting of the process and outcomes of involving service users in research. Staniszewska et al (2011Staniszewska et al ( , 2017 have developed a checklist (the Guidance for Reporting Involvement of Patients and the Public (GRIPP) checklist), which encourages researchers to systematically document the aims, methods and outcomes of involving service users in their research projects, and also include practical information, for example about costs.…”

“…This is a theme which has equal relevance in the involvement of service users. For example, in assessing the impact of peer interviewers on the process of the interview, it is important to critically consider other characteristics, besides the one(s) the peer interviewers have in common with their interviewees (Jørgensen et al 2017b). Diversity within service user involvement groups is a well reported issue (Branfield 2009;Brett et al 2014) and the lack of recruitment from marginalised groups a general problem (Green 2016;Omeni et al 2014).…”