Abstract
Introduction
The centrality of ethics to researcher-participant relationships within community-based research (CBR) requires ongoing reflexive engagement from the researcher to reflect on, and manage, the impact of research processes and activities, including interpersonal interactions, on the research participant and consequently on the research data (Cordner et al., 2012). It is such reflexive activity, occurring in the context of the REALITIES project, a large Scottish community-based research project (which began in February 2024, ongoing until February 2027) where workers from community-based organisations have taken on the role of researcher (we call them community embedded researchers (CERs)) that illuminates the tensions which form the focus for this paper.
CBR is an approach that tries ‘… to make research a more inclusive and democratic process by fostering the development of partnerships between communities and academics to address community-relevant research priorities’ (Flicker et al., 2007, p. 478). Community based participatory research (CBPR) more concretely includes a participatory element (Banks et al., 2013; Guta et al., 2010; McDonald & Capous-Desyllas, 2021). For the purposes of this paper, the term CBR will be used and assumed to include CBPR. CBR has increasingly been used to understand challenges faced by historically marginalised groups of individuals, including indigenous peoples (Amauchi et al., 2022; Eriksen et al., 2021), those with lived experiences of inequalities including relating to health (Flicker et al., 2007; Flicker & Worthington, 2012) and/or disability (Gustafson & Brunger, 2014).
The REALITIES Project
The project, Researching Evidence-based Alternatives in Living, Imaginative, Traumatised, Integrated, Embodied Systems in health disparities (REALITIES) (see de Andrade and The REALITIES Consortium, 2024 for details of the project), is inspired by CBR and CBPR research, and explores how we might re-imagine the health and social care systems so that they might better respond to the needs of the communities who use them. REALITIES is based upon the premise that the present health and social care systems are not working for those who most need support, and more specifically that the present systems are traumatised and disconnected. REALITIES draws on Treisman’s (2021) research on creating organisations that are trauma-informed. Thus, the key purpose of the REALITIES model is to ignite systemic change to address health inequalities in our communities by re-imagining the health and social care systems.
The REALITIES project design focuses on organised and consistent engagement with communities at a local level as led by community-embedded researchers (CERs) (de Andrade & The REALITIES Consortium, 2024). To do this, the project has identified five community-based hubs situated across five regions in Scotland. Four of these are third sector organisations that provide a range of community arts- and nature-based activities to young people and to adults who experience psychosocial challenges. The final hub is a local authority-based community-arts focused service with a remit to work with displaced populations such as asylum seekers and refugees. There are additionally five workstreams that work across the five hubs. These workstreams are based around themes and topics that are present across the five hubs, including Release Reimagined which works across populations who might experience extreme marginalisation such as prison populations. The research is focused on understanding the everyday practices and experiences within these organisations and how they reproduce or resist the structures of the dominant systems within which they are situated. Central to our project is the figure of CERs – individuals who are employed by and therefore, embedded in, the community hub organisations. CERs occupy senior roles within their organisations and, based on existing networks and relationships with the academic researchers, had been involved in the co-production of the current iteration of REALITIES and the navigation of the inclusion of their organisations as hubs within the project. As part of this navigation, they were invited to take forward researcher roles on a one day a week basis. These CERs therefore occupy a dual identity of community worker (first) and researcher (second).
All data in our project is collected by CERs and, crucially, the activities that they are collecting research data on occurs as part of their everyday employment within their community organisation. The data collected takes the form of fieldnotes and reflections, co-created art pieces and other artefacts where appropriate, making visible the everyday practices within the hub organisations. The data gathered by the CERs is shared with the wider research team and co-analysis is undertaken. The goal of the REALITIES project is to consider how the health and social care systems might respond differently, particularly considering the implementation of relational, nature and arts-based practices, in mitigating health inequalities and their impact.
Formal ethical approvals have been gained from the Research Ethics Committee in the School of Health in Social Science of the University of Edinburgh. Additional ethical approvals have been granted where required by the organisations that the CERs are working in.
Relational Ethics
In community-embedded or community-based research projects, the importance of considering ethics relationally rather than as a set of procedures has increasingly been discussed (including Cordner et al., 2012; Hakkim, 2023; O’Sullivan et al., 2023; Wood & Kahts-Kramer, 2023).Whilst procedural approaches to ethics focus on the role of formal processes and procedures to ensure ethical research practice (Hunt & Godard, 2013), relational ethics is underpinned by an ethics of care and situates the relationship between researcher and researched at the centre of ethical practice (Bergum & Dossetor, 2005). For instance, Stouten and colleagues (2025) discuss that in regard to relational ethics, ‘anonymity should be reframed as a situated choice, not a fixed rule, with space for participants to opt in or out of recognition as the research evolves’ (p. 10). Such reframing, underpinned by Bergum and Dossetor’s (2005) principles of mutual respect, embodied presence, embodied knowledge, interdependency, and uncertainty/vulnerability, can be challenging to articulate and operationalise within fixed processes and procedures of institutional review boards (IRBs).
CBR’s concern with marginalisation problematises issues of power, and voice, aiming to trouble traditional research relations (Gustafson & Brunger, 2014). It engages with issues of epistemic injustice, where the voices of the marginalised are excluded as lacking credibility (testimonial injustice) or the marginalised are excluded from the social sense-making apparatus and therefore unable to influence the social structures in which they are themselves situated (hermeneutical injustice) (Fricker, 2007). This engagement with epistemic injustice situates ethics as central to the research relationship. Thus, a relational approach to ethics is arguably necessary (Cordner et al., 2012; Flicker et al., 2007; Hakkim, 2023; Hande et al., 2024; Onakomaiya et al., 2023) to enable marginalised populations to participate in research in a manner which does not risk symbolic violence through the experience of participation (Flicker et al., 2007).
A relational approach to ethics thus implicates researcher identities given that identity is connected to power (Castells, 2010; Gee, 2008). Thus, the CER identities of researcher and worker within the community organisation, both of which are positioned in particular power relation to those who use the community organisation, have implications for the ethical practices within REALITIES. Whilst the insider/outsider dichotomy, rooted in feminist theories, has provided the conceptual framework for examination of how researcher identities impact research (Acker, 2000; Collins, 1986; Rose, 1997), our CERs occupy two outsider identities. We argue that examining CER identity alongside discussions of ethics has been crucial to gaining a deeper understanding of how ethics is carefully and relationally negotiated in practice in community-based research.
We present challenges in relation to three aspects that have been an ongoing focus of discussions: (1) the impact of the CER’s researcher identity on their existing relationship with service users/participants; (2) vulnerability and the voluntariness of consent; and (3) the identification of what is research data. The data we draw on in this paper comes from the perspective of four CERs who expressed interest in contributing.
Methods
The data which illuminates these challenges comes from the various planned and organically emerging reflective discussions between the authors and the wider REALITIES consortium during the process of applying for formal ethical approval, and then in regular reflective discussions as the project has progressed. Since the project started, our consortium usually meets every second week for an hour-long participatory action research session on Teams, which is recorded and transcribed as data. We draw on approximately 30 hours of these discussions to inform this paper. In addition to these, each CER keeps a reflective diary of their community work experiences, which is shared with the consortium for analysis. Moreover, these co-analysis sessions served as the impetus for the data analysis for this paper and the research project’s approach to data analysis more generally.
For the purposes of this paper, the academic researchers involved as co-authors (AJ, CSRE, MDA, and RS 1 ) sent an email asking all CERs in REALITIES if they would be interested in contributing to this paper to expand on discussions of relational ethics that had emerged from earlier consortium-wide conversations. Ultimately, four CERs (SR, LC, DM, and SU) expressed their interest in contributing. The first and second authors scheduled a Teams meeting based on the availability of the interested CERs. Three of the academic researchers (AJ, CSRE, RS) created a series of questions to guide the discussion with CERs (see Table 1 in Appendix for the list of questions). One of the CERs (SU) was unable to attend the group Teams meeting so sent their responses to the first author (AJ).
The first and second authors led the discussion with the three CERs (SR, LC, and DM) and checked that they would be fine for the session to be recorded and subsequently transcribed for the purpose of writing this paper. All were in agreement. This discussion took place in March 2025 and lasted for 1 hour. Following this discussion, the first author checked the transcript for accuracy. Additionally, the first author (AJ) read through the transcript and the separate response to the discussion questions for the first round of thematic analysis (Braun & Clarke, 2006) by drawing out specific excerpts from each of the CERs driven by the earlier co-analysis sessions and the series of questions to guide the discussion. This was then shared with three of the co-authors (CSRE, MDA, and RS), where themes and excerpts were further honed and structured. A final draft of the paper was sent to all CERs and academic researchers who contributed to ensure accuracy and collaboration throughout the thinking and writing processes. Additional reflections were considered from previous participatory action research sessions and reflective diaries.
Findings
The Impact of the CER’s Researcher Identity on Their Relationship with Service Users-Participants
Within REALITIES, CERs are continuously navigating the dual identities of organisational worker and researcher. In this respect, the CERs identity as an organisational worker is much more established compared to the (likely) more recent addition of researcher to their identity. In their identity as an organisational worker, their focus is more on delivering the programmes and/or service and/or supporting specific individuals whereas as researchers, their identity includes the addition of gathering data to help answer the research questions of REALITIES. This new researcher identity has relational consequences for the individuals who use the services provided by the community organisations where the CERs work. Service users are now potential ‘research participants’. These research ‘participants’ are mostly already known to the CER in the context of the CERs’ everyday work for the organisation before agreeing to be included as participants in the REALITIES study. In fact, just as the CER is navigating the fluidity of their roles, the person using the organisation is navigating their identities as ‘service user’ and ‘research participant’. In this section, we draw on discussions with three CERs about the challenges and approaches they have adopted in navigating their dual identity, particularly related to sharing reflective data and the timing of who and when consent is sought.
In our discussions, Sam, one of the CERs, reflects on the challenges he experienced around recording reflective diary data. Sam is working within one of our five workstreams, which works across the five hubs. This workstream, Release Reimagined, focuses on individuals who may be more marginalised within society and do not exist in a specific ‘place’ such as the other community hubs. In particular, Sam is working in prison using drama approaches to explore neurodiversity with a group of male prisoners. Sam is working within the context of the project’s ethical approval which was additionally approved by the prison. In the first session with the group, he introduces the drama project, and then the REALITIES project. He identifies that he will be keeping an anonymised reflective diary in his researcher role with the REALITIES project. However, unlike his normal practice, where the first session is focused on developing relationships with the group and thinking with them about what they want to get out of the workshops, he is having to make visible his dual identity as drama worker and researcher. “So, are we microbes in a petri dish?”, asks one of the individuals in the group. Such a question can be interpreted as demonstrating the perception that observation and objectification are central to the identity of research participant. Such a response challenges the relationship that Sam is attempting to build with the group as he navigates these dual identities of drama worker and researcher.
Observation, within the prison setting, might be understood as a key disciplinary mechanism as defined by Foucault on the basis of Bentham’s Panopticon (Foucault, 2019) and it may be that what is being illuminated in this response is an unintended entanglement of the mechanisms of research and prison, shifting the group’s perception of Sam and his role. Sam reflects on how he is navigating this challenge by considering that he should not write in his reflective data anything that he would not wish the participants to read, ...[it is] a really good exercise just to go through … would you be happy to show some, would you be happy to show the person you're writing about what you've written about them and what they would think, and...because that is now part of the process that definitely ....You know, just say… you must always feel comfortable to show whatever you do... If your participant saw it, they wouldn't feel like, how dare you talk about me like that? ...And you're portraying them in a way that is dignified, I suppose.
Such comments illuminate the presence of the participant as potential audience, shaping what is said. Sam takes this a step further as he develops a solution which he hopes will enable him to navigate the relational challenges of his dual researcher-drama worker roles. He chooses to share his reflective research data with the participants, through a process of showing them what he has written, so that they can be reassured that they know what is being written about the session and/or about them. This judgement, on the basis of ‘do not harm’, feels right in terms of navigating his relationship and ability to do the drama work and develop trust with the group. However, as he talks there is an evident emotional burden relating to his concern that his prioritisation of the worker aspect of his identity means that he is not properly fulfilling the requirements of his researcher identity.
Lucy, another CER, reflects on the importance of timing when providing information about REALITIES to her service users. Working in a community context providing arts-based activities for adults with complex challenges, Lucy considers how she navigates the facilitator-researcher boundary: And I didn’t even talk to them about consent...didn’t even bring up the research today. They... know it’s there in the background. We talked about it when they were first signing up, but…I'm not going in on a first session and going right go on because… they’re quite vulnerable. And I'm not just bouncing and hitting them with research. So, we’ll probably do two, maybe even three sessions before I go. Right. OK. Do you want to be involved in this? How we’re thinking we’ll build up some trust first…before I start producing consent forms.
Situated in a community setting which is under her control as it is her organisation, Lucy is able to prioritise her facilitator identity, allowing time for relationship development with group members before seeking their consent to include them in data generating activities. The data here are reflective diaries as well as artefacts from the arts-based sessions which participants consent to being shared as part of the research. While it may be argued that delaying asking for consent could be seen as ethically questionable (Welch et al., 2017; Wiles et al., 2007), when this is viewed from a lens of relational ethics and particularly in the context of community organisations and services, it may be argued that it would be more ethically questionable to place the research front and centre at the detriment of the service being delivered. In the context of REALITIES, part of the role of CERs that is particularly challenging to navigate is determining the appropriateness of when and how research can and/or should be conducted in the specific contexts of their organisations. Sam and Lucy’s differing contexts in terms of both place – prison versus a community interest company – and population – prisoners versus people living in the community with complex challenges – provide different possibilities for introducing and navigating the researcher aspect of their identity. Positioned within her context, with fewer situational and contextual constraints (although still constrained by research ethics principles), Lucy is able to manage her dual identity in a way that is less emotionally burdensome for her and her community members.
Providing arts-based opportunities for displaced populations of refugees and asylum seekers, is Deborah (another CER)’s focus. Working collaboratively with artists who had lived experience of displacement, Deborah recalls the impact of shifting the focus from the more social aspect of the workshop to the research aspect: … when we delivered our first creative hub for [displaced populations]...We were having [a] snack and something to eat and there was quite a nice energy in the room. But the minute we called…time for everybody to come together to hear about why we were here, even though information had been sent out [about the research], there was this real…intake of breath. Like I felt…the whole room got really tense and when I was obviously speaking about, you know, has everyone received an info sheet and that we would be coming round to collect consent, and you didn't have to consent. The response to me was, it felt distrusting. Which is totally understandable...then each of the artists took a turn to speak, to introduce themselves. Why they were working on the project, what their role was going to be. You saw the room just completely relax and the four artists all have lived experience of being either a refugee or a forced migrant, or a person of colour from [hub area] and so that representation in the room meant that everyone then was like, can I sign a consent form?
Deborah’s observations around the change in atmosphere in the room when shifting to discuss the research ethics in relation to the workshop demonstrate how the collection of research data in the everyday context changes the workshop participants’ experiences. In this situation the importance of having workshop facilitators and/or artists, who are recognisable as belonging to refugee or migrant communities, is invaluable in creating trust between the participants and the workshop facilitation team.
Across these three examples we can see how the introduction of the notion of research participation disrupts the normal working relationships between our CERs and participants illuminating the practical and emotional work that CERs have to do to navigate their dual identities.
Impact of CER Identity on Voluntary, Informed Consent for ‘Vulnerable Participants’
This above discussion of CERs dual identity as community workers and researchers can further be considered based on its impact on voluntary and informed consent throughout REALITIES. Voluntary informed consent is arguably one of three foundational notions in literature on the protection of human research participants, with the other two being fairness in the selection of research subjects and appropriate balance of risk and potential benefit (Nelson et al., 2011). The notion of voluntary informed consent within institutional ethics boards serves the role to ensure that research practices adhere to ethical research frameworks in order to protect any potential research participants. Voluntary informed consent can be understood as the presence of two necessary and jointly sufficient conditions: intentional action and the absence of controlling influence (Nelson et al., 2011).
This project has highlighted the complex nature of obtaining voluntary informed consent with the populations we work with, and in the context of the dual identity of CERs. Participant Information Sheets (PIS) and Consent forms were crafted in plain English collaboratively between the CERs and the academic researchers. Translation into other languages was done as required. Whilst written in plain language, PIS cannot be assumed to be accessible and therefore the research is explained at the point of gaining consent. Whilst within the context of research such processes are familiar, they represent formal governance structures. Marginalised groups, by virtue of their marginal status, often carry challenging experiences of entanglements with formal governance structures. Thus, as is demonstrated in the quote from Deborah above, the introduction of a formal process such as consenting can create tension between her researcher identity and the community group and/or potential research participants.
Deborah explained how these forms can lead to distrust, and the potential damaging of her relationship with the service users that she normally works with. Additionally, she expressed concern that individuals may feel the pressure to consent to participate in the project to ensure their continuity in receiving the services they normally would receive from the organisation, or for fear of appearing rude or ungrateful. […] [the participants] were really honest, so say if you were to come here today […] we would have signed your consent form out of total respect and not wanting to come across as rude.
Lucy, too, grapples with the notion of consent, and in the quote in the previous section, describes how she felt it necessary to establish a certain level of rapport and trust before she even mentioned the idea of consent forms. In conversations with her, she expressed how in her hub: [...] there’s a real distrust of authority, like the people we’re working with are automatically, not all of them, but most of them are distrustful of authority. Authority’s done nothing for them as such. And you know, as soon as you start, we spend ages building up this level of trust. And as soon as you start whipping out very formal pieces of paper, you’re automatically positioning yourself as authority, right, and that strips away any credibility you’ve built as a community member.
Thus, the dual identity of CERs highlights how adopting the role of ‘researcher’ and having to comply to institutional and academic ethical practices (such as data collection and written consent forms) has the potential to disrupt existing relationships between the service users-participants and CERs-community workers. As in the discussion about Deborah’s experience, this puts into question whether existing procedures designed to protect participants can, in fact, lead to unexpected forms of harm.
The notion of voluntary informed consent becomes an even sharper focus in research with so-called ‘vulnerable populations’ (which all of our participant population tend to be categorised as). The notion of vulnerability signals a need for researchers and research ethics boards to carefully consider (a) the possibility that some participants may be at higher risk of harm (Bracken-Roche et al., 2017); and (b) that some participants may not be deemed to be able to give consent (van den Hoonaard, 2018). The notion of ‘vulnerable populations’ fixes vulnerability as a deficit characteristic of the people categorised within such groups (Ries & Thomson, 2019; van den Hoonaard, 2018). Whilst identification as ‘vulnerable’ is meant to ensure robust ethical procedures to protect participants, the label can also be experienced by individuals as inferring that they are ‘less than’ (Lajoie et al., 2019), or lead to exclusion of particular groups from knowledge creation (Ries & Thomson, 2019). Lucy’s statement below reflects the tension she experiences between the anti-stigma and mental health recovery discourses within which her community work is embedded, and the deficit discourse of ethics procedures that she must engage with in her researcher role. I think quite often ethics [boards] and organisations have a different view on vulnerability... So, what [IRBs] consider to be vulnerable, I don't consider to be vulnerable quite often. And…that’s quite jarring. …most of the people that come through my place have got mental health problems or physical health problems. Lots of them would not describe themselves as vulnerable. Yeah, they've got mental health problems, but they're not vulnerable. They’re just people with mental health problems. So even categorising people as vulnerable places them in a deficit...Which is a tricky one with ethics, right?
Fineman’s (2008) concept of relational vulnerability offers an approach which might reduce the tension between these discursive positions. She proposes that vulnerability is universal (i.e., part of the human condition), produced through the entanglement of individual characteristics with the socio-political context of people’s lives. Thus, the notion of vulnerability can be disconnected somewhat from a stigmatising, deficit discourse providing a better fit with Lucy’s discursive identity as community worker. By drawing on the concept of relational vulnerability and the relational ethics approach, issues of vulnerability can be negotiated between researcher and participant through constant attention to the ways in which vulnerability might manifest in, and through, the research relationship, thus helping reduce this tension.
Another CER, Shona, offers a different perspective on vulnerability based on young people and/or their parent or guardian’s disclosures of the young person’s vulnerability: The other aspect to consider is that in our context it is not the participant giving the consent, it is the parent or carer who consents and who tells us of their [the young person’s] vulnerabilities – some parents do not disclose vulnerabilities such as additional support needs – others have self-diagnosed a vulnerability they believe their young person has. Family make-up/challenges can lead to vulnerability in a young person but it’s very rare for this to be disclosed formally and it’s more likely to be disclosed anecdotally by the young person as the relationship with them builds. We are building a safe space for them, but we also need to make sure we do have consent. The guiding principles of youth work are: • It’s a choice for the young person to participate • The work starts where the young person is at • It’s a shared learning journey for young person and worker I think these principles work very well ethically for REALITIES – we never force participation but we do need to have consents for participation.
Shona demonstrates a relational approach to vulnerability, acknowledging the challenges of relying on information from parents and the need to remain attentive to the manifestation of vulnerability across the research process. Embedded in youth work, informed consent is a constant part of Shona’s work, allowing her to accommodate these requirements across both researcher and community worker identities.
What is Data and Data Sharing?
In building from our earlier points on CER identity and the working relationship with service users and then CER identity and vulnerability and consent, querying data and data sharing within this context adds further depth of how data is understood more broadly within expansive community-based research projects such as REALITIES. In this section, we delve into how understanding data and data sharing has been navigated in REALITIES and what this suggests for how the dual CER identity may be understood. In particular, we are focusing on how part of this complexity is based on what counts as data (alongside the everyday work of CERs) and then subsequently how this view of data and data sharing is then represented within formal data sharing agreements as required by academic institutions and ethical review boards.
In discussions with CERs, about data and data sharing more generally, Sam comments on the types of data: How are things being influenced by other things? That's difficult to capture. They're not solid...it's really important because in some ways that's the stuff that matters much more... on the ground. That's the stuff that paints a much clearer picture of the reality, rather than of reductive view of what data is important.
This comment by Sam points toward how the balance between differentiating between the roles of researcher and community worker are understood and grappled with in practice. This doubt is likely further exacerbated by the broad approach to data that is adopted in REALITIES, wherein what counts as ‘data’ is meant to be as expansive and creative as is possible, so includes anything from researcher reflective diaries to painting a mural in the community and everything in between. The above quotation by Sam is likewise regarding the challenge that CERs face in differentiating between everyday data that would be collected as part of their community role and what counts as data to answer the specific research questions for REALITIES. In this way, it leads to questions about what data should look like and likewise who owns such data, when it is difficult to parse apart everyday data from data relevant to the REALITIES research project.
This view of data and the challenges of navigating such potential ambiguity with what counts as data to be gathered and what is the everyday work of CERs are managed through data sharing agreements. In REALITIES, data sharing has been approached very carefully and collaboratively, so that the community-based approach to research is entrenched throughout. All consortium members of REALITIES are considered joint data controllers with legalities and formal requirements covered in our data sharing agreement and GDPR. This means that every collaborator in REALITIES, regardless of their researcher status, needs careful training on data management and/or sharing from an academic perspective. Anonymisation, pseudonymization and other ethical guidelines we may take for granted in academia are not common practice for all community organisations, particularly those who use, for example, photographs of community members for local funders or impact and marketing purposes. How or can these images be used as data? To what extent (if at all) can consent of this kind be withdrawn? For example, what happens if a community member tells a CER they would like to withdraw consent, but they fail to pass this information onto the university, which is ultimately responsible for withdrawing consent from the shared database?
In practice, such approaches to data sharing have proven to be nuanced and complex, particularly in how they exist alongside the CERs dual identity of researcher and community worker. Shona, one of the CERs, reflected on the importance of understanding why data was being gathered: We have always been robust with data and with consents, the challenge is more what purpose the data you are gathering has – it’s easy to fall into a trap of gathering lots of data but not having any intelligence that is useful or meaningful from this. This is something we review and reflect on a lot – I’m not interested in data gathering for the sake of data gathering.
This importance of understanding why data was being gathered seems to point toward a crucial element of conducting community-based research – wherein CERs and their communities (primarily) guide what is relevant and important to research. Yet, the dual CER identity of researcher and community worker represent a further complexity in how this process of deeming what is important to study is traditionally determined. Wherein, in community-based research, CERs are now intricately directing and implementing the process surrounding how data is understood, collected, managed and shared within the context of academic institutions and ethical processes. Yet, as previous researchers have reported (O’Sullivan et al., 2023; Wood & Kahts-Kramer, 2023), ethical processes in academic institutions require further refinement with how CERs tend to conduct research (such as requiring more flexibility than is often granted in traditional IRBs), making this research that CERs are meant to guide and implement, not always straightforward to conduct in practice.
Thus, data and data sharing both conceptually and practically (by way of data sharing agreements, such as we use in REALITIES) highlight the delicate balance needed to encompass the complexity of what counts as data for the research project and consequently how that data would then be shared and protected.
Discussion
In delving into the ethical tensions that have emerged in our own REALITIES research project, one commonality that threads across our points is that of the CER identity. Interestingly, there appears to be a gap in the literature in this regard. Despite there being a wide range of literature discussing the relational ethical tensions in conducting community-based research (such as O’Sullivan et al., 2023; Wood & Kahts-Kramer, 2023), there were very minimal mentions of how these ethical tensions can be linked to CER identity. In particular, the CER identity of being both a community worker and a researcher creates a challenge of a dual identity and introduces a shift. We will use this to ground the remainder of our discussion and to link how it connects to tensions created in relation to service provision and researcher identities, vulnerability, informed consent and data sharing.
Reflections on CER Identity, Tension Between Roles and Working Relationships
The findings demonstrate a tension between the community worker and researcher aspects of the CER identity. This led to questions such as how does being an organisational worker first, and researcher second trouble the boundaries in the relationship between the CERs and the people that use those services? The CERs are never performing a single identity (either community worker or researcher) but are always performing both identities at the same time. This includes when they are running events for their service users and at the same time taking consent and collecting data. Whilst one identity will take precedence over the other in situations, e.g., when seeking informed consent, there is constant movement between the two. It is this sense of being community worker and researcher at the same time which creates what Banks et al. (2013) refer to as blurring of boundaries. Within their work, Banks et al. (2013) reflect on ethical tensions and blurring of boundaries created by adding a researcher role to a volunteer role within community-based projects. They document how this shift in role created ethical implications not just for the researcher but also for colleagues within the organisation (Banks et al., 2013). The impact of the dual identity of CERs may also therefore have implications for the wider functioning of their organisational teams, an aspect that would benefit from further investigation in our project.
The CER identities are both ones in which they are in positions of power (to provide a service or as researchers). The embeddedness of the CER role, and the fact that they are community workers first with an additional researcher identity, means that they are working in a context where continuity of service provision is paramount. Whilst this is a consideration within ethics processes, usually dealt with through statements such as ‘if you choose not to participate this will not affect the service you receive’, the position of the researchers as service providers positions them differently to researchers who come into organisations as outsiders. The impact of this seems to be rarely if at all directly addressed in the literature, but the data we present clearly identifies that this creates ethical challenges. Previous literature has alluded briefly some of challenges we have faced (such as Hakkim, 2023 with their reflections about negotiating different questions about ‘positioning [themself] as a researcher’, including ‘Should I remind participants of my objectives in the middle of the interview?’ [p. 741]). Yet, this previous research does not tend to expand on this ongoing negotiation of research identity. Banks et al. (2013) also identify a tension arising from the embeddedness of community-based researchers. They conclude that high levels of reflexivity are key to understanding and managing issues arising from positionality and power within the research. The focus of REALITIES on both process and outcomes, the structures that support reflection within the wider team, and use of reflexive diaries as data, provides space for the CERs to surface such issues and to gain support from each other and the wider team as they seek to navigate their research relationships. This iterative reflexive engagement with both aspects of CER identity is central to the research as it unfolds, and therefore its impact on the process, and outcomes, of the research requires both transparent reporting in research outputs and sensitive engagement from ethics committee members.
Reflections on CER Identity, Consent and Vulnerability
Luna (2009) offers a relational conceptualisation of vulnerability not based on labels attached to a particular population but based on the particular relational and contextual elements that may render someone vulnerable. This view of vulnerability thus, pays attention to the asymmetries of power, of information, of experiences, and the like, that may apply to a person in a specific context.
The goal of the researcher is to identify these asymmetries – or layers of vulnerability – and to think of ways to minimise those layers (Victor et al., 2022). Taking this particular notion of vulnerability allows us to consider how, standard ‘official’ informed consent procedures within research institutions could highlight and emphasise specific vulnerabilities for a particular group. For example, in an earlier excerpt presented, Deborah speaks about consent forms leading to distrust from participants who are from displaced populations of refugees and asylum seekers and who are weary of ‘official looking’ forms and what these may mean for their (potential) refugee status. It is vital to consider whether existing ethical procedures can suddenly become unethical in this particular set of relationships and for the people that REALITIES is working with. This likewise builds upon earlier points about vulnerability and CBR, such that CBR is meant to trouble traditional ‘researcher-researched’ power dynamics (Gustafson & Brunger, 2014). However, the official ethical procedures that result in further formality and the potential for delays in the research and the working relationships with community members may be a detriment to the intended research beneficence (Onakomaiya et al., 2023). The use of ‘official’ informed consent forms and/or procedures also has the potential of changing the existing relationship between the CER and the service users in their organisation.
Vulnerability, consent and autonomy interact in a second way. REALITIES highlights the contextual and layered nature of autonomy and consent. Deborah, for example, noted that service users may be more likely to participate if the type of compensation given in any of the projects met specific vulnerabilities of the group (for example food, shelter, warmth, transport costs). Thus, the dual identity of CERs as both community workers and researchers cannot be untangled from consent or vulnerability, such that the power dynamic that the CERs exist in through both their roles impact how they might approach asking for informed consent. The shift in role from community worker to community worker
Reflections on CER Identity and Understanding Data and Data Sharing
The CER identity and understanding data and data sharing likewise helps to make sure that relevant data is being gathered and that nothing is simply researched that would not be beneficial to the community that the CER works within. This builds upon the earlier excerpt from Shona, such that the ‘insider’ knowledge that the CERs possess allows for a greater understanding of what is important to the community than an ‘outsider’ researcher would be aware. This has previously been highlighted in the literature as an important part of CBR (such as Goodyear-Smith et al., 2015; Wood & Kahts-Kramer, 2023), but its link to the relational ethics tensions it offers have been less explored within the literature. For instance, in traditional IRBs there are often much more rigid standards of what constitutes data and how the plan to collect data must be decided significantly beforehand and not strayed from (Amauchi et al., 2022; Banks et al., 2013). Yet, if in Shona’s case, for example, research priorities may shift and change based on the community in question, it would ensure that all data gathered would be of ongoing relevance to the community. Moreover, as what constitutes ‘data’ may mean something different between CERs and those in academia (such as on IRBs), there is the potential for there to be a clash in how this data would then be understood, collected and shared further illustrating the complex process and balance in collaboration within community-based research.
Conclusion, Practical Implications, and Areas of Future Research
Overall, examining the relationality of ethics in community-based research, particularly as related to CER identity, is an area of research that allows for a more critical understanding of how community-based research proceeds in practice. Moreover, gaining a better understanding of relational ethics in community-based research allows for the opportunity to potentially to understand how such a relational view of ethics fits in with existing ethical procedures and processes in academic institutions and IRBs.
The main practical implication pertaining to the identified tensions discussed in this article associated with CER identity illustrates a need for this complexity of identity and relationality to be considered to a greater degree in ethics committee policies and research practices in academic institutions. For instance, this can build upon the implications offered by Brown and colleagues’ (2010) wherein funding and academic institutions can provide training that is focused on tensions underpinning CER identity. Likewise, Wood’s (2017) proposal for practical ethical implications can be mirrored here wherein the tensions that we have identified can be included in recommendations for researchers to bring to their IRBs when engaging in discussions about CBR and the surrounding ethicality.
The discussions and conversations that have emerged in and around this paper have led us to propose three points of future research. The first is that the existing CBR toolkits, such as by the Centre for Social Justice and Community Action & National Coordinating Centre for Public Engagement (2022), while useful as a starting point, work with static ideas rather than engage with ethical debates. We are suggesting, as a supplement to these CBR toolkits, a series of questions for researchers and research projects interested in illuminating and understanding ethics as a relational construct could prove especially beneficial in guiding future research to continue this discussion. The second point is in echo of previous research (Amauchi et al., 2022; Banks et al., 2013; Brown et al., 2010), which calls for a more flexible ethical process for community-based research. We would like to expand this further to examine if and how it could be possible to offer a less formal ethics process that would create fewer ethical tensions for CERs in community-based research. For instance, could a more flexible and less formal process of informed consent be developed to combat scenarios such as the ones we present in this article to allow the focus and priority to remain on the service users receiving a service rather than as participants of a research project? Finally, to further and continue the ethical and theoretical discussions in this paper, it would likewise be important to understand the participant’s perspective in community-based research projects, such as REALITIES, on the formal ethics procedures such as participant information sheets and consent forms and how this shapes their experience and overall choice to participate (or not) in the research project.
This research illustrates the importance of relational skills and reflective spaces such as the ones we have offered in REALITIES for CERs and the need for this discussion to be continued and extended with further training and critical consideration about the relationality of ethics. It is also important for this thinking to dovetail with debates on different conceptualisations of data (for example arts-informed, nature-based, podcasts, photographs and videos) when anonymity may not always be possible and/or meaningful, particularly when working with under-served communities traditionally labelled as ‘vulnerable’.
Footnotes
Acknowledgments
ORCID iDs
