Peer researchers in post-professional healthcare: A glimpse at motivations and partial objectivity as opportunities for action researchers

Abstract

Peer researchers are members of a population under study who have a decision-making role or staff position on a research team. Peer researchers are increasingly required for funding proposals to succeed in Canadian HIV/AIDS research, and are strongly recommended for community-based participatory research in other fields. There is a need to better understand peer researchers’ motivations and their impact, both positive and negative, on studies they take part in. The emerging theory of post-professionalism informed a bounded system case study approach, whereby four peer researchers from an HIV, social work, and brain health study were conveniently sampled, then interviewed concerning their experiences and insider-outsider positioning. Personal interest and community leadership were key motivations behind their involvement; language barriers and managing multiple roles were key challenges. Participants identified a risk inherent in the performative interval, considering whether their contributions were a projection of self rather than a representation of participant contributions. Tension between social location and the insider positioning expected of peer researchers requires that academic researchers recognize the personal and social investments that peers make to a study. This paper presents considerations for how healthcare researchers can better engage as peers with peer researchers.

Keywords

Community-based participatory research peer researchers healthcare HIV/AIDS insider-outsider positioning

Background

This article presents a qualitative case study of four peer researchers (researchers who personally identify with a population under study), who worked on a community-based HIV study. We seek to understand the enablers, barriers, and positionality of peer researchers so that action researchers can better partner with community members in the co-construction of knowledge. This article concludes with five implications for action researchers in their work with peer researchers regarding the value of community-based work, striving for equity, reconceptualising motivations, holding open conversations, and the benefits of post-study follow-up.

Peer researchers

Peer researchers participate on research teams as individuals personally affected by the topic undergoing investigation (Greene et al., 2009). The positionality of peer researchers – how they classify themselves and derive knowledge – is important to conceptualize, as the relationship between a participant and the self can be complex and multi-layered. 'Positionality' is used throughout this paper as it refers to how peer researchers place themselves on a research team. The term peer researcher' is used as peers are classified as insiders, i.e. ‘ … those indigenous to the communities of interest … ’ with outsiders, therefore, classified as external to a community being researched (Angotti & Sennott, 2015, 438). There have been attempts to challenge the over-simplification of these binary distinctions by recognizing the variability, context, and fluidity of an individual’s identity; however, the sentiment of ‘researcher-community’ partnerships continues to hold power in defining how research team members identify themselves, and their relationship with each other (Angotti & Sennott, 2015; Baum, MacDougall, & Smith, 2006; Griffith, 1998; Naples, 1996; Obasi, 2014; Turgo, 2012). Paid compensation, relevant capacity building activities (e.g. training on data collection, data analysis, etc.), and full involvement can enable a positive peer research experience (Greene et al., 2009; Jacobs, 2010; Marshall et al., 2012). ‘Tokenism’, or when peer researchers feel they are involved solely because of their identity, alongside misunderstandings of research goals, methods, and language and a lack of acknowledgement for the breadth of value that peer researchers add to a research team (e.g., lived experience, access to community, relevance, multiple roles, etc.) can bar peer researchers from feeling equitably involved on a project and can discourage them from participating in future opportunities (Fine & Torre, 2006; Greene et al., 2009; Westhues et al., 2008). Another challenge is the ambiguity of shared identity; peer researchers interacting with members of their own community report methodological challenges – such as assumptions of shared knowledge and experiences that may not, in actuality, be shared (Greene et al., 2009). Other methodological challenges involve peer researchers holding dual positions during interviews – being both a peer and researcher – and relying on their peer identity as the basis for their approach; this potentially compromises their impartiality (Greene et al., 2009). Partiality is inevitable in action research endeavours, and in social science research more broadly, as projects seek to co-construct models of understanding through collaborative inquiry between stakeholders (e.g. peer researchers, service providers, academic researchers) (Patterson & Goulter, 2015). Recognizing partiality and considering the impact of the self on research is important to provide nuance to a study’s results (Marshall & Reason, 2007). Yet there remains a need to strive for objectivity, to attempt a balance between what can be known and what must be interpreted (Patterson & Goulter, 2015). Examples of strategies that build towards a measure of objectivity in response to concerns of over-subjectivity in peer research include incorporating flexibility in typical research methods by allowing for adaptability in their practice of data collection, such as through the use of semi-structured interview guides where peer researchers can prompt for new areas of inquiry within an established research protocol (Angotti & Sennott, 2015). The Canadian HIV/AIDS sector may provide further context to the prevailing conceptualization of peer researchers.

The Canadian HIV/AIDS sector

Client-centeredness is a requirement in HIV/AIDS research in Canada. The Greater and Meaningful Involvement of People Living with HIV (GIPA/MIPA) principle first appeared in 1983, shortly after the first AIDS cases were reported and when governments worldwide were slow to respond to the epidemic (UNAIDS, 2007). The impact of this policy on health research is that government funding opportunities are requiring that people living with HIV be equitably involved at all stages of research projects (Canadian Institutes of Health Research (CIHR), 2016; Ontario HIV Treatment Network (OHTN), 2016). Such a client-centred approach ensures that members of a population group being researched have a decision-making role in the development of new interventions and areas of inquiry. This approach is now being adopted by other sectors and the broader health community, such as Ontario’s Patients First plan (Ministry of Health and Long-Term Care, 2015).

Theory in action

The HIV/AIDS movement – encompassing over thirty years of activism, research, support, and treatment – has a mutually beneficial relationship with the principles of queer theory (Green, 2007). Queer theory started in the 1980s as a critical response to the era’s staid discourse regarding sex and gender. By presenting opportunities to subvert established ontology, queer theorists developed a foundation for ‘radical deconstructionism’ (e.g., public demonstrations) to disrupt the status quo (Edelman, 2004; Green, 2007; Seidman, 1993). As institutions were slow to respond to early AIDS cases in the 1980s, the emerging queer theory was needed to deconstruct the complacency of Lesbian and Gay Studies from a pragmatic point of view so that an urgent public health crisis could be adequately addressed. Simultaneously, an urgent public crisis legitimized queer theory and supported the paradigm’s development and evolution. Green (2007, pp.32–33) defined a ‘performative interval’ unit of analysis to observe how social location impacts an individual’s desire to create community change action. The relationship between a research subject and the self could result in an ‘ … inability of the individual to fully realize the concept and lay claim to ontological status’ (p.33). Yet as stated above, the current Canadian climate of HIV research and care requires the involvement of peers that can meld their identities with an area of inquiry.

The theory of post-professionalism (Burns, 2007) is also important in the context of community-based participatory research, which is epistemically rooted in a subjectivity derived from community members and researchers working in close collaboration to achieve social action and social change (Jacobs, 2010). Therefore, this approach dictates that knowledge be created in a manner that demonstrates empathy towards research subjects (Fine & Torre, 2006). This approach to knowledge production extends across disciplines within the Canadian HIV sector and shifts to a post-professional domain from the top (i.e. government funding) down. A principal investigator can apply for Canadian HIV research funding if they are a ‘knowledge user’ ‘who can be, but is not limited to, a practitioner, policy maker, educator, decision maker, health care administrator, community leader, or an individual in a health charity, patient group, private sector organization or a media outlet.’ (CIHR, 2016). Therefore, principal applicants may not hold a PhD, an academic appointment, or a job within a regulated health profession. Such eligibility criteria challenges the discourse of professionalism and the construction of knowledge within a traditional academic setting (Burns, 2007). This government-sanctioned move towards a post-professional funding climate means that individuals who hold multiple identities within the ‘knowledge user’ category (e.g. a social worker and a person living with HIV) could choose which identity would benefit them the most.

Despite the emergence of post-professionalism challenging who can provide which services within a system (Burns, 2007), there remains a need to co-create new models of knowledge and understanding. To accomplish this aim, relative outsiders (e.g. academic researchers or service providers) need to partner with insiders (e.g. peer researchers) to create scientifically rigorous and culturally relevant knowledge that can be adapted into real-world contexts. Insider/outsider relationships are complex and can fail if working processes are not reflexive (Angotti & Sennott, 2015; Chapkis, 2010). Further investigation into the role of peer researcher positioning and the sociocultural context on reflexivity in the Canadian HIV/AIDS sector may provide action researchers with further guidance on best practices. Incorporating strategies focused on managing multiple roles and negotiating representation within community may prove to be illuminating in this context (Berger, 2015). Community organizations that already address health inequities are well situated to pursue future exploration of peer researcher experiences, especially given their proximity to the population being studied (Belle-Isle, Benoit, & Pauly, 2014). Further exploration of peer researcher experiences may benefit from recognizing positioning during research democratization practices (Janes, 2015). Results from this formal integration may alleviate historical tensions that occur between university-based action researchers and the populations they study (Smith, Bratini, Chambers, Jensen, & Romero, 2010). Moreover, results from such inquiry may lead to improved reporting on the core studies that action researchers and PRs partner to achieve (Marti, 2016). Perhaps by formally devoting more time and resources to reflexive action research projects (i.e. exploring peer researchers positioning), a consistent methodology may emerge (Graça, Gonçalves, & Martins, 2017).

Research questions

As the following statements appear to hold true: (a) the principle of greater and meaningful involvement of people living with HIV is the standard for Canadian HIV research and care; (b) the HIV sector and its outputs affect other health sectors; and (c) involving peers in decision-making can risk a failure of the ‘performative interval’, it is therefore important to explore how the insider–outsider relationship factors into client-centered research and care. To begin exploring peer researcher positionality, it is important to identify enablers and barriers of their experience and the underlying philosophy motivating their participation in this role. As such, this study was designed to answer the following research questions:

What are the self-identified enablers and barriers regarding a sample (n=4) of peer researchers who attended the same meetings and completed the same activities (e.g. conducting interviews) on the same research team?

How do these peers position themselves on a study concerning HIV, social work, and brain health?

The study’s purpose is to consider motivations, challenges, and positionality of peers on a single community-based participatory research study. Results are presented with details on strategies used to build credibility of the data. This leads into a discussion that includes five implications for action researchers.

Methods

The emerging theory of post-professionalism informed a bounded system case study approach (Creswell, Hanson, Clark Plano, & Morales, 2007; Merriam & Tisdell, 2016), whereby four peer researchers were conveniently sampled and each completed an in-depth interview with the first author. Interview questions covered benefits and challenges of their role with probes for supports during the study period, how disagreements were managed, and recommendations for new peer researchers. The interviews were analyzed using grounded theory, as open coding was used to determine themes followed by selective coding to identify statements that provide additional support to the identified themes (Charmaz, 2014; Strauss & Corbin, 1998). Peer debriefing, member checking, and thick description were all used as validation and reliability strategies (Creswell, 2013; Miles & Huberman, 1994).

Author positioning and assumptions

The first author is a social worker who employed and interviewed the four peer researchers, as part of his Master’s thesis. The second author is a social work professor who assisted the first author with study design and analysis, but had no interaction with the peer researchers. The third author is social work professor who is the first author’s supervisor, and interacted with the four peer researchers in team meetings as co-principal investigator. The fourth author was the first author’s research coordinator, and assisted the peer researchers with study activities (e.g. scheduling data collection). The authors approached this work with attempts to create an equitable work environment with peer researchers (based on existing literature) and an assumption that research should strive for objectivity (based on training and work experience in healthcare). This assumption became clear during analysis of the data presented here. Interviewing peer researchers about their experiences as post-study follow-up increased our consciousness of the relational dynamics on the completed study, and directions to improve those dynamics moving forward.

Data collection

Case study methodology was utilized because a single bounded system was common amongst participants (n = 4) and it would have been impossible to separate the phenomenon under study (i.e. peer researcher experience) from the context (i.e. the study that participating peer researchers worked on) (Creswell et al., 2007; Merriam & Tisdell, 2016). The bounded system (Creswell et al., 2007) was defined as peer researcher participation on a one-year community-based participatory research study exploring the role of social work in supporting HIV-positive older adults concerned about HIV-Associated Neurocognitive Disorder (HAND) (Eaton, Craig, & Wallace, 2017). The first author led that study from a community organization and recruited peer researchers who volunteered at that organization based on their relationship to the study topic (all were aging with HIV and had concerns about their cognition) and their interest in research. Interviews were conducted at the AIDS Committee of Toronto (community-based HIV organization) in early-November 2016 and ranged in length from 00:12:25 to 00:16:54.

Data analysis

Grounded theory informed the analysis plan, whereby the principal investigator utilized open coding to first identify concrete factors that enabled or barred PR participation (Charmaz, 2014; Strauss & Corbin, 1998). Selective coding was then used to determine statements that supported these codes. After these concrete themes were identified, the authors listened to the interviews again to identify how peer researchers positioned themselves. As the sample size was small and the interviews were brief, the principle of horizonalization (i.e. placing equal emphasis on every statement) was used by the analysts (Merriam & Tisdell, 2016; Moustakas, 1994).

Validation and reliability strategies

Peer debriefing was utilized on December 1, 2016 via the author sharing an early version of this paper with two colleagues. Member checking was employed as the peer researchers read and approved both an early draft and the final version of this article. Thick description has been used in the results section to provide context to responses.

Results

The first research question is addressed by participants identifying two key enablers of peer research (personal interest and community leadership) and two key barriers (language and managing multiple roles). Participants answered the second research question by struggling with tension concerning insider–outsider positioning and the research process, leading to a theme titled ‘Who’s in and who’s out?’

Theme 1: Personal interest

Peer researchers engaged with this study because the topic (i.e. how social work can support HIV-positive older adults through cognitive concerns and challenges) was of great personal interest to them. As a participant said:

As an HIV-positive woman, some of [our problem] is with the brain, all this treatment we take can really have a problem with the brain. We forget something, have mood, stress or depression for no reason – that made me really interested to participate in this research. (I1, female)

Another participant echoed this sentiment in the following quote:

Well as somebody who is living with HIV and has been for almost 28 years, one is mindful of not only their own cognitive health and things that they need to be aware of and a little concerned about, but also the fact that one has known a number of people, through the arc of time that are experiencing trouble, difficulties themselves, so if there’s something going forward that can help address the needs of people who are experiencing this so that they’re not overlooked, you know, within the system itself, I think it’s something that I certainly wanted to be a part of. (I3, male)

A third participant summed up this theme, saying ‘I was interested, I think, partly because of my own investment in the question. How can you not be interested in looking at what you can do about something that you’re terrified of?’ (I4, male).

Theme 2: Community leadership

Being viewed as a leader within one’s community motivates people to conduct peer research, with a participant saying: ‘Maybe make people to have brain health … You know? Also, is for me as a peer researcher, to make interested people to participate is to show them: “Look at me” – To give me my stories … Yeah, to share my stories’ (I1, female). Another participant expressed a similar opinion in the following quote:

It provided me a little more of an opportunity to have the courage to talk about this more openly … in the community … when others became aware that I was participating in this … they expressed, for the first time to me, challenges or concerns they had been living with. (I3, male)

Theme 3: Language barriers

This theme refers to barriers in speaking and comprehending English and to barriers in understanding the language of research. Regarding English language barriers, a participant said that ‘The challenge for me, until now, is language barriers … when I interview some of the [participants] and then they don’t understand because of my accent.’ (I1, female). Regarding the language of research, another participant said the following:

The one thing I found a little challenging, I think, was I didn’t really understand the coding. We weren’t involved in that actually, and maybe that’s a skill set that needs extra training. But I did find it a bit challenging in the meeting we had after [the three coders] were, we all came together and you reported back, I found the way it was presented didn’t give me a clear understanding of the results in a way that I would have liked and I had to struggle to understand it. And it was only when I saw it in writing … in your thesis which I read quite thoroughly, that it came together. So if there was a challenge for me, I would have liked for that to be a bit easier for me to understand. (I2, male)

Theme 4: Managing multiple roles

Participants expressed that it was challenging to fit into a peer researcher role, when they held other positions within the HIV sector. As a participant said:

If I had an anxiety about the interviews, it was I wasn’t sure how easy it would be for me to take a neutral role because career-wise when I’ve been involved in interviews like that, it’s been in a counselling role. So I had to take that hat off. (I2, male)

A component of the project had trainers external to the research team provide capacity-building sessions on peer research. A participant struggled with multiple roles during these trainings, saying:

I found [the trainings] really irritating because I think I was bringing my perspectives and roles as a social worker to people who didn’t really know what therapy is … I really did have to struggle with what is my role as a therapist and what is my role as an interviewer … how much should I be probing? What’s the boundary here? (I4, male)

Theme 5: Who’s in and who’s out?

The above quotes show that participants were considering their position as insiders or outsiders within the community of people aging with HIV who may be susceptible to HIV-Associated Neurocognitive Disorder (HAND). Participants clearly identified themselves as insiders, by saying ‘Being someone with a stake in the outcome … who has gone through [HAND] assessment processes myself, and knowing folks who were clearly struggling with the issues of HAND’ (I4, male). Yet there was hesitation to identify a close insider relationship to the topic, as a participant said: ‘My anxiety was that I don’t identify as a long-term survivor … it’s unlikely that I would experience HAND in my lifetime. So I was very worried that I wasn’t a real peer, in that sense.’ (I2, male). Benefits of participation were also explored with participants, with one saying the following:

My benefit is … honour in the community, is value in the community. It makes me an expert to have another experience about other people in the community, what other issues they have with brain health … to be on the teams, to see me on the website, that is my benefit, people say I’m important in the community. (I1, female)

Finally, a participant expressed a concern central to the research process:

I think, by definition, analysis meetings are all over the map … if there was one question I had going in that I came out without an answer for, is how these processes actually distill something that actually represents what the clients are really saying. In other words, there’s an epistemological question there about is our interpretation about what they’re saying actually a reflection of what they’re saying? … are we projecting, making up stories about what they’re saying or are we close to an approximation of the reality of their narratives? (I4, male)

Discussion

The results indicate that peer researcher enablers in this case are more conceptual (i.e. personal interest and sense of leadership) than tangible (i.e., paid compensation). By contrast, the barriers (e.g., misunderstandings) are more practical and easier to address. The results also speak to the difficulties inherent in insider positioning and the risk to the performative interval.

Enablers to peer researcher involvement

The three enablers for peer researcher involvement that were identified from existing literature (i.e. paid compensation, relevant capacity building, and meaningful involvement in the research process) (Greene et al., 2009; Jacobs, 2010; Marshall et al., 2012) were not explicitly named as primary enablers for this study’s participants. This is interesting as the first author (principal investigator) had attempted to build these three components into the study design to intentionally improve the peer researcher experience. Peer researchers received honoraria for each study activity, a blended learning training curriculum was developed for this study’s purpose (Eaton et al., 2018), and all study decisions were made in full team meetings. The authors perceive that the two enablers – personal interest and community leadership – may speak more to the participants’ overall motivations to contribute to their communities than to specific factors of the study design. This aligns with Herzberg’s motivation theory (Herzberg, 1987; Herzberg, Mausner, & Snyderman, 1959), which continues to be validated (Sachau, 2007; Tesavrita & Suryadi, 2012), that compensation must be sufficient; however, it is intrinsic factors (such as personal interest and community leadership) that motivate people for work (Bassett-Jones & Lloyd, 2005). The implication here is that action researchers should consider a broader view of motivations beyond compensation. Personal interest (i.e. concerns about cognition) motivated PRs to get involved, as they wanted improved social work services concerning HIV, aging, and cognition. The close relationship that PRs had to the topic may have led to more in-depth interviews. Participants on the larger study talked about their discomfort raising concerns about HIV-Associated Neurocognitive Disorder (HAND), and their experiences with social workers and other service providers in great detail (Eaton et al., 2017). It is possible that participants felt comfortable to share these reflections when the peer researcher interviewing them self-identified similar concerns. This dynamic was raised in a quote pertaining to community leadership; a participant mentioned that the study gave them courage to speak more openly about HAND. Peer researchers spoke about negotiating their role, both within the research team and the broader community. A peer researcher stated that they found the capacity building activities irritating. This finding suggests that justifying a peer researcher role and demonstrating expertise to their peers outside of the study (i.e. in the community) was potentially more important than financial compensation and internal research team processes. In reflecting on this case study’s findings, the authors’ understanding of peer researchers’ motivation changed from that of a paid role that they feel prepared for to one that they are fully involved in (such as coding and learning the language of research) as a primary factor, with compensation and capacity building required but secondary. Further investigation into peer researcher enablers could benefit from interview guides that specifically address both conceptual motivations for involvement (such as personal interest) and any deliberate components of the study design (such as financial compensation) that can improve the peer researcher experience.

Barriers to peer researcher involvement

The three barriers identified in the background (i.e. tokenism, misunderstandings, lack of full acknowledgement) align with participant experiences (Fine & Torre, 2006; Greene et al., 2009; Westhues et al., 2008). The theme of negotiating multiple roles, which included a value statement on trainers not understanding the purpose of therapy, could be interpreted as the peer researchers feeling confined to a single identity as a ‘peer’ when they brought broader experience to the research team. This tension was difficult to mitigate for the first author, who approached the study with an intent to equitably partner with peer researchers. Yet barriers of community-academic approaches were present. The first author has since learned that a balance between striving for objectivity and recognizing partiality (such as a desire for supportive working environments, positive study outcomes) is needed to truly partner with peer researchers. Reflecting on this study’s results, the authors realized that they approached this work with the notion that peer researchers were peers of study participants, when they are also peers of the academic team. This realization emerged from analysis of these peer researcher interviews. The implications are that may be helpful for academic researchers to engage in a similar process of post-study follow-up with peer researchers, and take practical steps to improve their experience on subsequent projects. There are practical steps that the first author now takes to strive for an improved peer researcher experience (such as peer researchers presenting at conferences and authoring publications); however, the authors need to improve their work with peers at all study stages (such as taking their recommendations on methods). Prior to this study, the first author worked with the peer researchers as social workers and community service providers. Part of the peer researcher training was designed to help peers transition from service provider to researcher roles. A key component of this transition is the recognition that the role of the interviewer is to help participants expand on their thoughts and experiences, not to address those concerns or provide therapy. While this risk did not present itself in the actual interviews, as the peer researchers understood that participants would have opportunity for debrief with the first author following the interview, it was a difficult transition to make in the training. Misunderstandings, whether between English and French, or with the language of research, caused confusion for the peer researchers. The first author has since made attempts to mitigate these language barriers, by following up to a greater extent about meeting content and research activities. These findings are important in planning future studies, as broadening the scope of peer researcher capacity building to build on existing knowledge bases may make team processes more accessible for peers who do not feel proficient in English and/or research terminology.

Peer positionality

Participants reflected on insider/outsider continua, and which identity they preferred. Peer researchers often assume that they are hired to assist with recruitment (Greene et al., 2009; Guta et al., 2016). However, participant assumption here was that personal concern about the subject provided them with insider positioning on the study. Peers held multiple roles (i.e. being both a social worker and a person living with HIV), yet they engaged in this context as a peer. An example of this is that the peer researchers frequently introduced themselves to interviewees by saying ‘I’m living with HIV, so I’m a peer of yours.’ This positioning was difficult for one of the peer researchers, as shifting identities causes a power disruption when a person moves from a position of ‘power over’ to ‘power with’ another individual (Chapkis, 2010). This peer researcher was accustomed to engaging with other people living with HIV as a social worker, where their foremost identity was that of a service provider. Moving from the position of service provider to that of a researcher who is personally invested in a health issue – especially one related to cognitive decline – causes feelings of inadequacy and a need to regain control (Chapkis, 2010). Such a shift may result in feelings of irritation. The practical implication here is that academic researchers should not ignore irritation from peer researchers, but discuss the feelings of irritation and how the problem can be resolved.

Insiders cannot walk away

Participants expressed differing views on their insider status concerning HIV-Associated Neurocognitive Disorder (HAND). A peer identified terror as a motivating feeling to participate, while another peer felt removed from the topic due to the length of their HIV diagnosis (‘long-term survivor’, in the quote above, refers to an individual diagnosed prior to the advent of antiretroviral therapy in the mid-1990s). Such a variety of responses affirms that insider positioning is complex (Angotti & Sennott, 2015). Relatedly, participants enjoy the performative aspect (Green, 2007) of peer research involvement as they felt feted by their communities. There is a tension between the complexity of insider identity and the benefit of being viewed as a community leader. As relative outsiders, academic researchers may not be expected to meld themselves with their topics to the same extent as an insider peer researcher; community members may not expect academic researchers to truly represent their identities. For the peer researchers, however, the expectation is different. For the peers to be accepted and valued for their research contributions by their communities, they need to identify closely with the research subjects. Based on the data, this insider identity caused some anxiety and discomfort. This tension could cause peers to accept community recognition despite concerns that they are not adequate representatives. As Chapkis (2010, pp.493–494) states, peer researchers cannot ‘walk away’ from a study, whereas academic researchers can.

Performative interval risk

The ‘performative interval’ in peer research refers to how much a peer researcher attempts to align themselves with participants, such as through stating shared experience, aligning body language in interviews, and clarifying participant quotes during analysis (Green, 2007). These actions are helpful in community-based participatory research, as they can make participants feel more comfortable and offer rich insight during analysis (Vaughn, Jacquez, & Zhen-Duan, 2018). However, a participant discussed the risk of this performative interval by wondering if their contributions to analysis were truly based in participant quotes or in the peer researcher’s own perspectives on the study topic. We used strategies to mitigate this form of bias, by having independent coders’ complete separate analyses of the data prior to an iterative discussion with the peer researchers to determine findings (Eaton et al., 2017). Peer researchers – and their academic partners – can also lower this risk through self-awareness of their own opinions on the study topic. The implication here is that academic and peer researchers should openly talk about their assumptions and opinions regarding the study’s topic prior to commencing analysis.

Implications for action research

This study presents five implications for action researchers to consider in their work with peer researchers: (a) conduct research with community organizations; (b) reflect and act to strive for equity; (c) consider motivations beyond compensation; (d) openly discuss opportunities, biases, and experiences; and (e) conduct post-study follow-up with peer researchers. This case study is limited by brief interviews with four peer researchers from a single study, so these implications are suggestions that action researchers may adapt for their own contexts.

Conduct research with community organizations

Action researchers can challenge traditional researcher-community hierarchies and inequities in health service by conducting research out of community organizations and recruiting people with lived experience from those organizations to take on peer researcher roles (Belle-Isle, Benoit, & Pauly, 2014). This article demonstrates that the dimensions of peer researcher involvement in community organizations are complex and multi-layered, as peers may have multiple roles within an organization (e.g. service provider, peer researcher, etc.). As such, it is important for action researchers to sensitively consider the enablers (e.g. personal interest, community leadership), barriers (e.g., tokenism, language misunderstandings, lack of full acknowledgement), and positioning (e.g., insider/outsider positioning, performative interval risk) of peer research.

Reflect and act to strive for equity

Through this case study, the authors recognized that an intention to equitably engage with peer researchers is insufficient; traditional researcher-community power differentials were still present in the language and conduct of research (such as lack of full involvement). Continuous reflection and action are needed to mitigate this power differential. The first author has taken action on these considerations through further work with four peer researchers studied here, and additional peers on two subsequent studies. The first is a pilot peer intervention concerning medication adherence and substance use for people living with HIV who are being discharged from hospital (Eaton et al. 2018). The second is a pilot randomized, controlled trial to determine feasible group therapy for people with HIV-Associated Neurocognitive Disorder (clinicaltrials.gov #NCT03483740). The first author now discusses personal interest and opportunities to demonstrate leadership (e.g. dissemination plan) with the peer researchers on these studies, to collaboratively ascertain whether either or both projects would align with their personal goals. Further, the first author has made attempts to mitigate barriers to peer research identified here by discussing the purpose and methods of these subsequent studies in plainer language and involving the peer researchers more heavily in the analysis process (through multiple meetings to discuss emerging findings). These actions have been identified as helpful in a preliminary sense by participating peer researchers.

Consider motivations beyond compensation

Sufficient financial compensation is important for peer researchers, and a key component of budgetary considerations in Canadian HIV research (CIHR, 2016; OHTN, 2016); however, payment may not truly motivate peer researchers for their work (Basset-Jones & Lloyd, 2005). This case study and decades of work on motivation (Herzberg, 1987; Herzberg, Mausner, & Snyderman, 1959; Sachau, 2007; Tesavrita & Suryadi, 2012) show that it is other factors (e.g. personal interest, community leadership) and the environmental context (e.g. supportive work environment) that motivate peer researchers and encourage them to continue working on research projects.

Openly discuss opportunities, biases, and experiences

Action researchers can enhance the peer research experience by transparently discussing the personal interest and leadership opportunities for peer researchers alongside biases and opinions from the entire team and how to lessen language barriers and feelings of tokenism through plain language discussion and frequent meetings. These conversations should include discussion of study aspects that peer researchers may find irritating, as these negative experiences can be opportunities for positive change. These conversations can highlight the value of subjectivity and acknowledge the passion that academic and peer researchers may share to improve healthcare. This process may improve team cohesiveness (Vaughn, Jacquez, & Zhen-Duan, 2018), contribute to more fulsome analyses (Westhues et al., 2008), and create more supportive work environments for peer researchers (Smith et al., 2010).

Conduct post-study follow-up with peer researchers

This case study illuminated author assumptions and team tensions that had previously been unaddressed. Interviewing peer researchers about their experience on a completed study can provide action researchers with insight on how the peer researcher experience could be improved on subsequent studies. Additionally, future qualitative studies of peer researchers could benefit from distinct sections in the interview guide for both conceptual (e.g. community leadership) and tangible (e.g. capacity-building activities) factors could further illuminate PR motivations and challenges beyond the findings presented here.

Limitations

Data were only collected at a single time point, when case studies often benefit from repeated measures (Creswell et al., 2007). Despite the reliability and validation strategies used, there remains a risk of bias as the principal investigator was both the interviewer and primary data analyst.

Conclusion

Peer researchers experience tension between the insider positioning expected of them and their own identities. For academic researchers working with peers, it is of critical importance to recognize their personal and social investment in the study and how they are perceived by the study subjects and the broader community. It is suggested that post-study follow-up (such as interviews) is conducted to understand and assess peer researchers experience. It is important that peer researchers feel adept at negotiating their social spaces from a presumed position of power and knowledge, so that they feel empowered to continue representing their communities in the co-construction of models of knowledge and understanding.

Footnotes

Declaration of conflicting interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship and/or publication of this article: This work was supported by the Ontario HIV Treatment Network (OHTN) under Grant number CBR1043. ADE acknowledges additional OHTN funding under Grant number CBRG1074 and funding from the CIHR Canadian HIV Trials Network (CTN) under Grant number PT029.

Author biographies

Andrew D Eaton, MSW, RSW, is a PhD student and research director at the FactorInwentash Faculty of Social Work (FIFSW) at the University of Toronto. Mr. Eaton has received grants from the Canadian Institutes of Health Research (CIHR), the CIHR Canadian HIV Trials Network (CTN), and the Ontario HIV Treatment Network (OHTN). All of his research is grounded in the principles of community based participatory research, and he frequently partners with peer researchers. His doctoral work is comprised of a community based, pilot randomized controlled trial that is testing the feasibility of a novel group intervention for older adults affected by HIV-Associated Neurocognitive Disorder (HAND).

A Ka Tat Tsang, PhD, RSW, is a professor at FIFSW. The focus of Dr. Tsang's work is the development of a knowledge base for human service practice in a globalized context, combining conventional and creative forms of knowledge production. The key themes are diversity, global community, and innovation in practice, with active integration of theory and research.

Shelley L Craig, PhD, RSW, is an associate professor and associate dean, academic at FIFSW and is the Canada Research Chair in Sexual and Gender Minority Youth (SGMY). She has a 20-year history of utilizg community based participatory approaches in social work research and practice, particularly with SGMY.

Galo F Ginocchio was research coordinator at the AIDS Committee of Toronto (ACT) at the time this study was conducted. He is currently a research coordinator at St. Michael's Hospital in Toronto, Canada.

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