Centring the Self in Participatory Research: An Autoethnography-Led,Mixed-Method Approach to Research for Those Conducting Collaborative Research With Hard-To-Reach Groups

Abstract

This paper presents an innovative participatory research methodology developed to investigate the lived experiences of Irish mental health experts by experience (EBEs) for the author’s doctoral research. This autoethnographically-led, mixed-method approach integrated evocative and analytic autoethnography with in-depth qualitative interviews, centring the researcher’s own lived experience in the research. The research prioritised ethical sensitivity between the researcher and research participants, fostering trust, openness, and empowerment among participants who represent a hard-to-reach, vulnerable group. Key findings illustrate that embedding the researcher’s subjectivity within the study disrupts insider-outsider perspective dichotomies for researchers, diminishes power imbalances, and strengthens collaborative knowledge production. This participatory methodological approach enabled EBEs to articulate their experiences authentically with the author, who also participated as an EBE. The paper then explores the researcher’s vulnerabilities in conducting the research, underscoring the ethical imperative of safeguarding researchers during emotionally demanding data collection processes. By combining autoethnography with qualitative interviews, the methodology put forward in this paper advances a framework for researchers that empowers marginalised voices, fosters transformative practices, and ensures ethically rigorous engagement with groups often considered vulnerable. The paper concludes with a consideration of the widespread applications of this methodological approach for researchers from vulnerable groups in their own work.

Introduction

A common challenge faced by qualitative researchers engaged in participatory research is the position they occupy in the “space between” (Denner et al., 2019; Weddle & Oliveira, 2024) the insider and outsider perspectives in relation to both the research and the research participants. This liminal position brings factors including the researcher’s role in the research, and their identity relevant to those being researched, to the fore. Ethical concerns regarding issues of power imbalances between principal researchers and participatory researchers, and how truly collaborative “collaborative” research can be, are well-documented (Bansal et al., 2019; Gomez et al., 2021; Rappaport, 2016). Such ethical concerns, and the need for researchers to adequately safeguard against them in their methodologies by ensuring their approaches are equitable, are perhaps particularly relevant to research being conducted with vulnerable people or groups, hard-to-reach groups, or those experiencing vulnerabilities (Aldridge, 2014; Ketefian, 2015; Liamputtong, 2007; Thompson et al., 2021; Van Wijk & Harrison, 2013).

This article outlines an innovative qualitative methodology that was developed to confront the seemingly fixed binary of “researcher” and “research participant” for a collaborative study which explored the lived experience(s) of mental health Experts By Experience (EBEs) in the Irish context. Mental health EBEs are individuals who experience mental and emotional distress, and who have reflected upon their experiences to develop a unique experiential expertise (Beresford, 2007, 2010, 2012; Happell et al., 2019; Javed & Amering, 2016; Mac Gabhann et al., 2010; Noorani, 2013; Tew et al., 2004).

This research was analysed through a poststructuralist theoretical framework informed by Foucault’s (1980) theory of power-knowledge, and Gramsci’s (1971) concept of hegemony. This theoretical lens was designed to place the researcher and their own experience of mental health issues amongst those of the other research participants. My participation in this research as a peer with the other research participants was a core component of this methodology for epistemological reasons of openness, equality, and intellectual honesty. As Altman (2002, p. 317) states: “For those of us engaged in that broad range of disciplines usually summarized as encompassing humanities and social sciences, the claim to objectivity and science too often becomes… a form of intellectual dishonesty”.

In the interest of maintaining intellectual honesty, it is important to briefly consider the qualifier of ‘hard-to-reach’ and its use to describe groups who have historically experienced systematic and social inequities due to their being ‘other’ from the hegemonic group (Foucault, 1980; Gramsci, 1971). The phrase is not without its criticisms and problems, as it places some of the culpability on those within the ‘hard-to-reach’ communities for not being accessed by researchers or services (Brackertz, 2007). It also homogenises entire groups who are neither responsible for their lack of representation, nor always internally consistent in terms of community identity (Fry et al., 2023). These critiques notwithstanding, the qualifier of ‘hard-to-reach’ is employed in this paper, and is understood using Tourangeau’s five characteristics of these groups’ from a methodological perspective. For the researcher, these groups are characterised as “populations that are hard to sample, those whose members who are hard to identify, those that are hard to find or contact, those whose members are hard to persuade to take part, and those whose members are willing to take part but nonetheless hard to interview” (Tourangeau, 2014, p. 1).

Two complementary research strands of autoethnography and in-depth interviews with EBEs were employed in this methodology. The iterative nature of this design allowed the researcher to navigate and facilitate a significant organic shift in the focus of the research which occurred during data collection. The methodology facilitated a collaborative, mutually open, and honest research process from the beginning of data collection through the data analysis, with all participants being as involved in the research and its form as they wished. This change may not have been well supported using a more traditional, positivist methodology. This article will explore the methodological insights offered by this innovative qualitative design, the ethical considerations, for both the researcher and the participants and how they were addressed, and the discrete vulnerabilities of the researcher in conducting this qualitative research.

Research Design

The research employed an explorative, qualitative research design to answer the two research questions — (i) What are the views, experiences, and insights of Experts By Experience on Irish mental health policy and practice? and (ii) What are the implications of Experts By Experiences’ insights for the future development of mental health policy and practice? It investigated areas of participants’ lives that are deeply personal, nuanced, and in many cases, difficult to discuss and revisit. These qualities often lead to mental health EBEs being considered ‘vulnerable’ by default, rather than considering the individual who may wish to participate on a case-by-case basis. It can be argued, as was true of this research, that such individuals may be confidently safeguarded from having any existing vulnerabilities affected by participation in a piece of qualitative research once the researcher has designed their research methodology around its participants to empower them. The onus is on the researcher to accommodate the distinct ‘vulnerable’ people or groups they wish to engage in research with.

A qualitative methodology is the most beneficial for research investigating and analysing issues of mental health and distress from a lived experience perspective (Beames et al., 2021). Quantitative methods, such as questionnaires, are not equipped to accurately capture and portray the intricacies of lived experience, particularly in instances of chronic mental and emotional distress (Brazier, 2010, pp. 348-349; Saarni et al., 2010, pp. 386-394). As Taylor and Francis (2013, p. 12) note, qualitative research is beneficial to research which seeks to “get to the core of human experience of health and illness to facilitate change at individual and governmental levels”.

This design used the two parallel research strands of autoethnography and in-depth qualitative interviews with EBEs. These strands were chosen for their depth, quality, and authenticity (Denzin, 2012, p. 82). Seidman (2013, p. 9) notes that “At the root of in-depth interviewing is an interest in understanding the lived experience of other people and the meaning they make of that experience”.

The primary aim of this qualitative research design was to explore and analyse the experiences and expertise of EBEs in relation to Irish mental health policy and practice using autoethnography and in-depth interviews with EBEs, with the goal of analysing the lived experience of these experts who were developing their expertise during the timespan that the Government of Ireland’s (2006) third mental health strategy, A Vision for Change (AVFC) was the active government mental health strategy. This analysis was anticipated to reveal areas where EBEs’ lived experience aligned with or differentiated from the overarching goals, vision, and specific policy provisions of AVFC.

This research captures the voice of people who have unique experiences of mental health policy and power relations from the service-user perspective, and from the perspective of an expert group who have historically been absent and not included in Irish mental health policy and practice. This research design allowed for research which describes the journey to becoming an EBE in mental health according to these experts themselves, and in demonstrating the value of their unique expertise and place at the policy stakeholder table.

The design employed a triangulated methodology. Triangulated methodologies for qualitative research studies were originally theorised by Denzin (1970), and later developed by Flick (2007), Flick et al. (2012), and Foucault (2009). They have several benefits. Theorists have found that using a triangulated methodology offers rigour to the research and its findings. This is thanks to the corroboration or falsification of fundamental underlying hypotheses, evidenced within the data that emerges from unique strands of inquiry (Denzin, 1970, 2012). This increases the validity of the analysis and findings. Further to this, Flick (2007), Flick et al. (2012) argues that triangulated methodologies add “breadth, complexity, richness, and depth to any inquiry” (Denzin, 2012, p. 82). These benefits, including the increased validity of findings corroborated across different modes of inquiry (Denzin, 1970), made a triangulated methodology the most suitable design for this research.

A triangulated methodology is composed of two or more research methods (Denzin, 2012). I employed the two research methods of autoethnography and in-depth qualitative interviews with EBEs outlined above in my data collection and analysis. I proceed to outline the rationale for each method here.

Autoethnography and Including the Self in the Research

The research is an autoethnographical study. Autoethnography is a research method and approach to research that exists across a broad spectrum. There is no one singular autoethnographical method, and autoethnography exists on a spectrum ranging from analytic to evocative autoethnography. Ellis et al. (2011, under ‘History of Autoethnography’, para 1) provide a definition of the method that encapsulates it and its core principles succinctly:

Autoethnography is an approach to research and writing that seeks to describe and systematically analyze (graphy) personal experience (auto) in order to understand cultural experience (ethno)… This approach challenges canonical ways of doing research and representing others… and treats research as a political, socially-just and socially-conscious act

Autoethnography centralised my lived experience as the researcher within this research. Using it, I reflect upon my lived experience of the Irish mental health services as an EBE while AVFC was active, and how this experience has informed my academic career and decisions as a researcher, as well as broader considerations of how it has influenced other areas of my life, including my professional career. There is also the more personal nature that is innate in autoethnography, and more so with evocative autoethnography, which is how the events and experiences I discuss using the method have shaped me as a person, outside of specific roles such as ‘academic’. All of this is revealed through autoethnography, making it an emancipatory approach to research – particularly as a response to presuppositions that individuals with lived experience similar to my own are innately ‘vulnerable’ in research concerning our experiences.

One significant component of my autoethnography in this research was a chapter laying bare my own experiences that have led to me becoming an EBE. I used evocative autoethnography (Ellis & Bochner, 2016) to tell the story and present the narrative of my life living with enduring mental and emotional distress. Regarding evocative autoethnography, Gergen and Gergen (2018, p. 5) note that “An evocative ethnography is designed not to constrain the reader’s attention but rather to invite a richer and more expansive appreciation of the possible. For the evocative ethnographer, emotionally arousing discourse plays a central role.” I wrote about the experiences I had growing up, from early childhood to the end of my treatment in the Irish mental health services at the age of 22 in 2012. These parts of my life were fundamental in shaping me as an EBE, up to and during the timespan when AVFC was the active government mental health strategy. It is important to note this timespan, as it was the period of analysis the initial research design and interview schedule was intended to investigate in the in-depth EBE interviews before the research shifted focus. The collected data ended up covering and capturing a far broader and more comprehensive timespan in the EBEs’ lives.

I followed the direction my EBE peers who were participating in the study were leading me in and reported on these same themes over a similar timespan, beyond the lifespan of AVFC, in my own evocative autoethnography. For Polkinghorne (1995, p. 16), this reflexive approach to producing narratives and following the data in conducting qualitative research, as I did with this piece of research, is important. He notes that:

The analytic development of a story from the gathered data involves recursive movement from the data to an emerging thematic plot… As the plot begins to take form, the events and happenings that are crucial to the story’s denouement become apparent. The emerging plot informs the researcher about which items from the gathered data should be included in the final storied account

Research Methods

Autoethnography

I chose autoethnography for several reasons that benefit the research. Autoethnography allows the researcher to analyse data that they can be assured is first-hand, with internal validity (Bleijenbergh et al., 2011). It allows researchers to produce deep, “thick” analyses of the data in answering the research questions at hand (Adams & Herrmann, 2023, p. 4).

Autoethnography also enabled me to step outside of the “space between” (Denner et al., 2019; Weddle & Oliveira, 2024) the insider and outside perspectives of the research by gathering qualitative data from a second service-user and EBE source, along with those obtained from the in-depth EBE interviews, as I am an EBE, and also a former service-user. This autoethnographical data has internal validity based in the grounded narrative of my life’s narrative as it pertains to becoming an EBE. Bleijenbergh et al. (2011, p. 145) note that qualitative data with internal validity, such as autoethnography, is best equipped to meet the research criteria of “verifiability, comprehensibility, and acceptance of the [research] results, as well as holism”. The autoethnographical method has been found to be positive when the researcher is investigating issues of health and illness, due to their emotional and personal aspects (Ellis, 1999; Foster et al., 2006). This made it well-suited to this research area.

Autoethnography places the researcher within the participatory research they are conducting, and they are therefore participant as well as interpreter. This is beneficial when conducting research with those who may be considered vulnerable, as it diminishes the power imbalance which can be imposed in a researcher-participant configuration. The willingness of the researcher to include themselves and their experience collaboratively with those of the other research participants builds rapport, trust, and openness.

Vulnerable people who may have had negative or harmful experiences with institutions and those who work within them may especially appreciate the humanising of the researcher as an individual with their own rich, lived experience offered by this methodological approach. The iterative nature of this methodology and research, and the collaboration and openness between myself and the other participants reassured participants that this research was being undertaken by a peer whom they could contact to make suggestions regarding the research. This diminished concerns that this research may be tokenistic or retraumatising. Many people who are considered vulnerable who participate in research conducted by those from outside of their group have, unfortunately, experienced the process of participating to be retraumatising, or have considered the completed research to be tokenistic (Domecq et al., 2014; McLaughlin, 2008; Morrison & Dearden, 2013; Romsland et al., 2019; Snow et al., 2018).

Evocative autoethnography, which formed a component of this research’s data collection and analysis, seeks to invite the reader to engage with the content emotionally as well as intellectually (Ellingson & Ellis, 2008). The autoethnographical epistemology and methodological approach involves a continuing discourse for the researcher with themselves as they conduct and shape the research. In this sense, within this research it functioned as both a narrative framework through which the research method of in-depth EBE interviews and the data collected from them could be viewed and described, as well as an ongoing part of the research itself. It is a thread running through each part of the research.

The research, like the person using autoethnography, is an evolving, iterative thing, and as such, it did not remain static as it unfurled and took shape. The research’s nature and form both changed and morphed as I undertook it and followed the data that I collected through interviews, as well as the data from my own evocative autoethnography where they led me. The end destination was wholly different to the destination envisaged when I commenced the research. The dynamic, fluid nature of autoethnography as a method and a methodological approach was fundamental in facilitating this collaborative research’s changing focus, and in allowing me as the researcher to adapt to it and reflect and report upon it in the written thesis. This is an innovative feature of this methodological approach. It allows research to evolve, and to bend without breaking. Berry (2021, p. 31) notes this iterative nature of doing and writing autoethnographical research and following through reflexive practice as it evolves: “Practicing reflexivity within evocative autoethnographic research and writing practices also creates the conditions through which autoethnographers co-constitute (i.e., creatively make and remake) our-selves within this inquiry”.

As a research method and approach to doing research, autoethnography exists on a spectrum from extremely fluid and artistic in its nature, including journal entries, art, poetry, journals, and dance as creative methods on the creative end (Bartleet & Ellis, 2009), to extremely analytical on the opposite end (Tullis, 2013, p. 245). Witkin (2014, pp. 1-25) notes that when it is reduced to its most fundamental parts, autoethnography can be defined as delonging to one of two strands: evocative autoethnography and analytic autoethnography. Anderson (2006, p. 375) notes that the analytic strand is concerned with “improving theoretical understandings of broader social phenomena”. Ellis and Bochner (2016, p. 51) describe how evocative autoethnography is concerned with revealing the subjectivity of the person doing autoethnography as they exist within the social and cultural world they are exploring through a “personal, vulnerable, reflective, self-conscious, self-reflexive, narrative voice”. My approach to autoethnography in this research employed tools from across this spectrum, with evocative autoethnography, which is artistic and creative, and more analytic aspects of autoethnography used in this research. It was used to iteratively reflect upon the nature the research took, how it changed, and how it was allowed to change due to my use of the method in the analytic strand in my writing.

I believe this autoethnographical approach also demonstrates the strength of EBE – the ‘vulnerable’ people, in this instance – knowledges in informing more traditional knowledges (Foucault, 1980), such as those prevalent in academia. As autoethnography is a reflexive and iterative methodological approach and process, the EBE data collected through the in-depth interviews informed me as a researcher and in reflecting upon my own journey when it came to conducting my own piece of evocative autoethnography.

In-Depth Interviews with EBEs

This research aimed to gather and interpret the perspectives of EBEs concerning their lived experiences of the Irish mental health services, as operated under the remit of government mental health policy (namely AVFC), to describe their experiences of these services and the impact they had on them in their process (es) of becoming EBEs. To answer the two research questions — (i) What are the views, experiences, and insights of Experts By Experience on Irish mental health policy and practice? (ii) What are the implications of Experts By Experiences’ insights for the future development of mental health policy and practice? – the first-hand perspectives of EBEs regarding their experiences were needed. Such perspectives from EBEs on what makes them an EBE from their lived experience, distinct from the academic discussions surrounding their characteristics, provided EBEs with an avenue to empower themselves and be heard by defining the Expert By Experience in practice as compared to the Expert By Experience as has been theorised in the literature. These EBE perspectives were also crucial in the theoretical formulation of an equal EBE stakeholder sphere in mental health policy and practice. In defining the role of the EBE in “the concrete social world” (Polkinghorne, 1995, p. 19), and the common journey undertaken by the EBEs who participated in this research, the perspective of these EBEs was the richest and most appropriate source of data available for this piece of research.

Ethical Considerations

This research and its methods were directly concerned with the sensitive issues of mental health/ill health and emotional distress, and individuals’ deeply personal experiences of them gathered through primary data collection. It was therefore imperative to consider the fullness of ethical considerations and obligations to ensure that the research constituted the lowest possible risk of causing distress to participants and researcher alike.

Individuals’ dignity, which may not have been recognised by third parties in the histories they shared, was respected at each stage of data collection and analysis, and their anonymity was safeguarded and protected. These ethical obligations are especially pertinent when conducting research that involves the interview participant describing relationships that they were a part of that were potentially abusive, defined by a power imbalance weighted against them. Such relationships are frequently a defining characteristic of the relationship between individuals who have undergone psychiatric treatment and the psychiatrists who treated them, as was true in my case (Dempsey et al., 2016; Egid et al., 2021; Kostovicova & Knott, 2022; Lazarus, 2013; Melville & Hincks, 2016). I will now describe the measures that were taken to ensure the ethical rigour, protections for all participants, and safety of all participants here.

In planning for the in-depth interviews with EBE from a post-structuralist perspective, I needed to consider the role I would occupy and ‘take on’ during the interviews and after them, in making myself available to participants for further comment, or retraction of their participation in the research without the need for explanation. In such an instance, I would follow the ethical guidelines described herein to fulfil ethical and moral obligations to ensure the participant had not been distressed by the research process, and if they had, to act accordingly to assist the participant insofar as my role allowed, or to aid them in identifying the most appropriate support available to the participant.

Informed Consent and Supports

All individuals who had agreed to participate in the interviews were provided with an information sheet detailing the research, its purposes, and the data collection and retention period. This information enabled participants to either give informed consent or to decide not to continue with their participation. The potential risk posed to them was detailed, with the primary risk being the potential for the research to trigger emotional distress for participants during or following the interview. A list of supports that were available to participants should this occur were provided. The participants were also reminded that, due to the discursive nature of this research, they could contact me with any concerns they had following the interview which we may have been able to allay together, and which may otherwise have resulted in a knee-jerk withdrawal from the research on the part of the participant.

The participants were informed that they could withdraw from the research at any time, before, during, or after the interview, without the need for explanation or justification. It was equally if not more important to me as a researcher to ensure that research had not resulted in harm for participants who may decide to withdraw from a study, as their withdrawal may signify emotional distress triggered by the research. The research design included the following contingency plan should such an instance occur. Participants would be made aware of the supports available to them in a non-invasive manner consisting of a once-off email from me. This approach was intended to protect against imposing upon any individuals who may have decided to withdraw for a myriad of reasons other than distress, while simultaneously making room for individuals who may have withdrawn due to distress to begin a dialogue with me to assist them in finding the appropriate support for their current mindset, should they wish to have done so. This scenario did not occur during the research collection.

Interview Sample

I planned for interviews to take place using purposive sampling, with EBE interviews taking place until the collected data ceased producing new results, resulting in theoretical saturation. As described by Morse (2004), this is the point at which data collection ceases returning insights, no new themes are emerging, and the themes which have emerged have been described thoroughly. Data collection can then be completed. Saunders et al. (2018, p. 1893) note that “… in one form or another it [theoretical saturation] now commands acceptance across a range of approaches to qualitative research. Indeed, saturation is often proposed as an essential methodological element within such work.” I achieved theoretical saturation following completion of data collection from the in-depth interview research strand with the fifth participant EBE. In total, five EBEs participated, with six interviews being conducted.

The primary identified sources of potential interview participants from the EBE sphere were service-user and mental health advocacy groups who lobbied government or publicly called for significant changes to the Irish mental health services at the time of AVFC’s development as a policy document, and reforms to its implementation once published.

The largest of these groups was the Critical Voices Network of Ireland (CVNI). The CVNI was selected as it is a network of service-users, people with lived experience(s), EBEs, academics, and practitioners who are critical of the biomedical model of mental illness and current mental health practice in Ireland. They host an annual academic conference in Cork, where individuals from these varied backgrounds present on issues of lived experience, their own research, and the research of others being conducted into areas critical of the status quo in mental health policy and practice.

This annual conference serves another key function for many attending service-users and EBEs, me included, as well as those close to these individuals including family, friends, and allies. It provides a sense of community, belonging, and being in a place where, for a few days out of the year, their subjugated knowledges (Foucault, 1980, p. 81) are the global unitary knowledge (Foucault, 1980, p. 82). It is a collaborative network, and invitations from researchers who are community members to network members to participate in research are welcomed. Notably, though this network had been the source I had anticipated recruiting the majority of interview participants from due to the size of its membership combined with previous research experience, this avenue returned no participants directly.

Interview participants were instead recruited using snowball sampling. Using this snowballing approach, one interested individual contacted me leading to an interview with them. This individual was the third EBE I interviewed. They then suggested the one individual they thought may be interested. Using the same approach outlined above, I asked them to contact this individual if they were comfortable doing so. This individual contacted me and became the fourth EBE I interviewed. They also had somebody in mind who may be interested in participating in the research. This person then contacted me and became the fifth and final EBE I interviewed.

The sense of community and interconnectedness that I have always felt amongst other service-users and EBEs was clear to me through this process. Personal connections to EBEs returned new research participants. These participants, in turn, had personal or professional connections to other EBEs who I did not yet know, showing how vast this somewhat hidden network of experts is. These EBEs were intrigued to participate in the research, knowing it was being conducted by a peer, and having had the process discussed with them from those with lived experience of the process, as they had just undergone interviews themselves. This experience of the data collection process reflects Kham’s observation that those researching a community they are a member of “are usually able to establish a faster and stronger rapport with their participants due to their shared cultural backgrounds, knowledge and/or their experience of the issue being studies” (2024, p. 2).

More knowledge was shared this way and further personal connections made between me and other EBEs, stemming from community and an innate sense of wishing to help other EBEs in their work, knowing that the shared goal is to make an impact and to try to improve mental health policy and practice through whichever professional medium that EBE is using to do so. In this way, it is evident how the autoethnographical methodological approach, and a researcher’s position as a member of the ‘vulnerable’ group they are researching, carries significant social capital and trust in successfully conducting collaborative research with groups which may be insular and hard-to-reach (Aburn et al., 2021; Berkovic et al., 2020; Komil-Burley, 2021; Mahmud, 2021; O’Connor, 2004).

Autoethnographical Approach to Interviews

The in-depth EBE interviews were conversational discussions between peers, who both had the shared experience of being through similar life experiences. With that comes an innate camaraderie. This camaraderie was facilitated by the autoethnographical nature of my methodological approach to these interviews, as I could share my own story with these EBEs where our experiences overlapped. This allowed for compassion, collaboration, and the natural evolution of our conversations. There was no sense of a power differential, or of myself and the participant occupying rigid, distinct roles to one another, such as me being the ‘interviewer’, and the participants being the ‘subject’. Actively preventing power imbalances insofar as possible was an important ethical requirement of mine going into these interviews. Having experienced negligent or abusive treatment as a result of being on the powerless side of a power imbalance within the medical model, I did not wish to impart any feeling of a power differential between me and others who may have experienced similar treatment, insofar as possible. Being able to bring my own experience into the interviews to relate to the participants through the autoethnographical approach was a significant contributor in meeting this requirement.

As these interviews were to follow an interview schedule which was not rigid, I had no anticipated mean duration for them. I was still somewhat surprised and pleased at how the conversational nature of the interviews allowed for them to develop so thoroughly and broadly beyond the interview schedule; the interviews ranged in duration from: 3 hours and 25 minutes at the longest; 3 hours and 8 minutes; 2 hours and 6 minutes; 1 hour 51 minutes; 1 hour and 25 minutes, and finally, 53 minutes at the briefest.

The 53-min interview was the first of the two interviews that took place with the second EBE, and it was ended due to time constraint. The second interview with this EBE lasted 2 hours and 6 minutes. This means that their total interview time also came to just about 3 hours.

Personal Impact of Interviews and the Ethics of Protecting the Researcher

Conducting the interviews was a great opportunity for me and the EBEs I spoke with to feel a sense of belonging, mutual understanding, community, and mutual respect that comes with knowledge exchange between EBEs. Though there was much to be heartened by, these interviews were also intensely emotionally laborious.

It was difficult to for me, as a researcher and as a peer, to listen to some of the extremely distressing things participants had experienced in their lives, and some of the life-altering traumas they had encountered. Though the interviews were conversational, I did need to remain the overseer and pilot of the conversation at times as the researcher who was responsible for participants’ wellbeing. This meant that I could empathise, sympathise, and discuss these topics with participants, but I still needed to remain balanced and unwavering. In this way, I had to suppress a lot of difficult emotions and reactions to some topics discussed during the interviews for the participant. Given the duration of most of these interviews, this meant that when they had concluded, the full weight of them would sometimes hit me. This was especially true of the first interview.

I discussed this with colleagues, who were understanding and directed me to some emotional and psychological supports I could avail of while undertaking this data collection. I realised that I needed to space out the interviews due to their content in order to protect my own wellbeing, ensure I had enough emotional resources to assume the unwavering, empathetic role required of me during the interviews, and as such, to ensure my integrity and ability as a researcher so participants could feel appropriately supported during their interviews and I could continue the research while safeguarding myself. I had thoroughly considered the potential for the impact any potential distress the interviews might have on the EBEs being interviewed in planning the research from an ethical perspective. I made every effort I could identify as a researcher and a fellow EBE to minimise the possibility of distress occurring, and developing a distress protocol to respond to any distress interviewees might encounter. I had not performed such an ethical analysis on myself as a participant in the research and developed a distress protocol or plan for myself.

This was an important observation in relation to the methodology, demonstrating the iterative nature of such autoethnographical research; in order to protect the research participants, the research itself, and myself as the researcher, I needed to adapt to meet what I felt was required of me to conduct the interviews based on my own expertise by experience and my own mental health needs.

Transcription

I had begun transcribing the first interview once I completed it, but due to the emotional impact the material had on me, I found it difficult to listen to the content repeatedly to correctly transcribe it. I realised I needed to step back from this interview in particular due to the themes that came up and how they resonated with me. I successfully transcribed the second interview, and began transcribing the third. However, I faced the same obstacle in the form of the emotional impact due to how much the themes resonated with me. This stalling and starting had the potential to become an obstacle to the transcription of the interviews. In order not to jeopardise the research because of time constraints, as well as to protect my own wellbeing to continue the research, I had the remainder of the transcriptions completed by a secure transcription service.

I then thematically analysed the interviews. They were all remarkably vivid, and due to their emotional impact, I remembered the details of each interview and each EBEs’ history. I took notes of the key themes that had arisen during each interview immediately after they each ended. I then listened to each individual interview in the days following their respective undertaking. I thematically analysed them, taking further and far more detailed notes on the themes and content that were emerging, and relating them back to the other interviews that had taken place. Though the common themes were already quite clear to me, this process elucidated them further and allowed me to develop subthemes related to each major theme. I kept these themes in mind while conducting each successive interview, and would ask further questions and discuss matters outside of the interview schedule if these themes emerged during the next interview. This led to clearer data coming from the interviews on the themes and subthemes, with more detailed accounts related to them. I continued this process through to the last interview, at which point no new data was emerging.

Reflecting the service-user experience and voice was a fundamental dimension of this research. A significant component of my rationale and aim in exploring and analysing the experiences and expertise of EBEs in relation to Irish mental health policy and practice was to hear EBE experiences, analyse how they relate to mental health policy and practice, and to give voice to these experiences in the research findings. Making space for their representation as a policy stakeholder sphere was crucial for two reasons. The first was to give an equal voice to the often tokenistic, fetishised, and/or voiceless experiences of service-users in social research (Domecq et al., 2014; McLaughlin, 2008; Morrison & Dearden, 2013; Romsland et al., 2019; Snow et al., 2018), and to place them on a level analytical foundation beside the two ‘traditional’ medical and statutory policy stakeholder spheres. The second reason was to contrast service-users’ experiences against EBE experiences to demonstrate and elucidate the differences that distinguish these seemingly very similar spheres from each other.

The research aim – to explore and analyse the experiences and expertise of EBEs in relation to Irish mental health policy and practice – was well-facilitated and actualised using the bespoke methodological approach developed to conduct it. The combination of autoethnography and in-depth interviews with EBEs allowed for a thorough investigation of their experiences, and when AVFC was analysed through the lens of their experience, the policy gap which exists for mental health stakeholders as a distinct expert sphere was elucidated. This demonstrates that this methodological approach is effective for researchers who wish to produce the “thick” analyses of data described by Adams and Herrmann (2023, p. 4) to answer their research questions.

Findings

This article has outlined the rationale and design behind the autoethnographically-led methodology employing traditional qualitative interviews with Irish mental health EBEs that was developed to conduct this piece of collaborative research with hard-to-reach individuals. The journey that this methodology and its flexibility allowed for have been explored. There are three significant findings which are applicable from this methodological approach which researchers engaged in participatory and/or collaborative research with vulnerable or hard-to-reach individuals can utilise to inform their own methodologies.

For the author, the most significant is the researcher’s centring of their self within the research amongst the research participants. As described in this article, the researcher positioning themselves as an active participant in the research and accounting for the subjectivity of their own lived experience relative to the group and research topic they are investigating is beneficial for several reasons.

Firstly, centring the self disrupts the conflict of the “space between” (Denner et al., 2019; Weddle & Oliveira, 2024) insider and outsider perspectives that researchers conducting such research can occupy.

Secondly, centring the self within the research as a peer challenges and diminishes power imbalances which can occur in any research, but which may be particularly felt by participants engaging in research from vulnerable or hard-to-reach groups. Such power imbalances may indeed comprise one of the primary barriers between researchers and research participants from these groups, and the methodology outlined in this article was effective in overcoming this. This can be seen by the recruitment of research participants using snowball sampling once the first research participant, the only participant successfully recruited using purposive sampling, informed potentially interested individuals that the research was being conducted by a peer including himself in the research.

The third benefit is the high degree of internal validity which is offered by autoethnography as a research method (Bleijenbergh et al., 2011). This methodology offers research and research findings developed through it increased rigour through the use of the second strand of more traditional qualitative interviews with research participants. This mixed-method approach, combining the progressive research method of autoethnography with the established and ubiquitous method of qualitative interviews, offers a high degree of validity to research undertaken using the approach. The approach simultaneously overcomes the issue of the “space between” (Denner et al., 2019; Weddle & Oliveira, 2024), as the researcher occupies a new space where they are firmly sited within the research holistically. It also offers the relationship between the researcher and the research participants during data collection and analysis the openness, honesty, and communal knowledge exchange evidenced in this article, while diminishing power imbalances (real or perceived) between researcher and research participant.

This methodological approach is malleable, with a key contribution being its adaptability to any vulnerable or hard-to-reach group with “subjugated knowledges” (Foucault, 1980, p. 81) by researchers who are part of these groups. The methodology demonstrates that the inclusion of the self in research in lieu of concealing the socially constructed nature of knowledge behind feigned objectivity can significantly benefit social research, rather than compromising it (Altman, 2002; Foucault, 1977, 1980, pp. 81-87; May 2012). The autoethnographical component is, itself, a means of sharing and empowering vulnerable and hard-to-reach voices for researchers who are members of minoritised groups (Beresford, 2002, 2007, 2010, 2012; Dings & Tekin, 2023; Noorani, 2013; Tew et al., 2004).

Limitations

In conducting this exploratory study, it was not possible to capture the diversity of mental health EBE experiences across the broad spectrum of identity. All EBE respondents were Irish, white, and cis-gendered. It was not possible therefore to secure a depth of insight into the intersections of gender, ethnicity, different cultural backgrounds, LGBTQ + individuals, and the EBE role. The limitations of this study in representing these EBEs’ unique experiences could be overcome by building on this research in time with further study purposively delving deeper into the experiences of EBEs from each equality strand to gain their insights.

Conclusion

This article detailed the innovative mixed-method methodology developed to conduct a piece of research investigating the lived experience(s) of individuals who experience mental and/or emotional distress. It explored the methodology’s unique autoethnographical, EBE-led framework, which fostered collaboration and eschewed the “space between” (Denner et al., 2019; Weddle & Oliveira, 2024) the insider and outsider perspective often encountered by researchers undertaking participatory research. The qualitative research design developed for this research was presented, and the primary research strand of autoethnography was discussed. This discussion included consideration of the unique approach to research autoethnography presents, including the method’s theoretical and epistemological foundations.

The use of autoethnography as a method in this specific piece of health-based research with hard-to-reach individuals, utilising methods from across its spectrum, including analytic and evocative autoethnography, was explored. The form that the second, parallel research strand of in-depth qualitative interviews with EBEs took was then detailed. The interview process was then reflexively analysed, with a discussion of the ethics surrounding the unanticipated impact that the transcription of the interviews had on the researcher and how the research was adapted to accommodate this.

The findings and the methodology’s potential for application in research methodologies were then explored. This innovative methodology, which is adaptable for any researcher driven to conduct participatory research due to their own lived experience(s) or identity as a member of a ‘vulnerable’ group, holds significant promise for the production of truly collaborative and participatory research with those whose voices are most seldom heard authentically.