Participatory action research (PAR) aims to support transformation , and this is in contrast to more traditional research approaches that often only provide explanatory accounts of the status quo (Martín-Baró, cited in Aron & Corne, 1996). Practitioners of PAR work alongside others in solidarity with collective struggles for social and economic justice . An important emphasis in PAR is the active involvement of people who are most affected by problems that they themselves have identified as needing to be addressed. PAR promotes democratic engagement and is distinguished by the positioning of all stakeholders as co-researchers (McIntyre, 2008). From a PAR perspective, transformation becomes possible through the active involvement of community members at each stage of the research process, from conceptualisation through to analysis, dissemination, and implementation of the findings. However, as we shall demonstrate, this commitment to sustaining the involvement of all can be difficult to maintain in PAR practice.

The ethical imperatives of PAR require the needs of involvement to be balanced with practical benefits for participants. In accounts of participatory research, however, explicit descriptions of the complexities of sustaining democratic involvement often are not given, so our chapter addresses that gap. In this chapter weFootnote 1 discuss a PAR evaluation of the work undertaken by an organisation known as developing partners (dp) in order to illustrate how our commitments to democratic participation were tested in the tensions arising in the processes of data collection, analysis, and in the final write-up of the research. The guiding question, ‘whose PARty was this?’ frames our discussion of the challenges of conducting PAR. In this chapter we identify three key tensions that emerged in our efforts to work democratically: we describe the methodological tools that we developed in order to better suit our aims and to ensure that participants’ voices were integral to both the research processes and the products of the research. We also give consideration to the ways in which our own investments in the research—a research qualification for the first author and supervisory responsibilities of the second—complicated the negotiation of appropriate processes for generating and analysing ‘data’.

Background to the Evaluation Project

In 2006 the Labour Party-led government undertook a number of initiatives geared towards the privatisation of the government-funded National Health Service (NHS) in the UK.Footnote 2 One of these initiatives is the Pathfinder Programme, the purpose of which is to fund a number of social enterprisesFootnote 3 to undertake work previously undertaken by the NHS (Leadbeater, 2008). I was an enthusiastic supporter of a programme that appeared to transfer a degree of power and control to stakeholders who previously had been viewed only as ‘service users’. I was a founding member of dp, a social enterprise established in 2007 for the purposes of participating in the Pathfinder Programme. The aim of dp was to develop and provide user-led training for health workers and user-led research and evaluation of health services. It was a relatively small community organisation located in the North East of England. In it’s six years of existence developing partners had many members who brought with them a vast range of lived experience, many of whom had migrated to the North East of England and some of whom had been born there.

All the participating members in dp had experienced mental distress, which influenced the decision not to capitalise the first letters of the name of the organisation; the intention was to emphasise the organisation’s solidarity with people who are often viewed as being low down in the social hierarchy. The organisation’s logo, ‘recovery through discovery’ indicated an alignment with the recovery model approach to mental illness which counters the deficit approach of the medical model by focusing on what people can do (Jacobson & Greenley, 2001). In the organisation’s engagement on various projects, a primary objective was to ensure that the voices of people who were least often heard were listened to and taken account of in any process that was undertaken by the organisation.

Members of dp had all experienced multiple layers of discrimination and exclusion. For example, members’ experiences of mental distress were often linked to their having been people seeking asylum or granted refugee status, or to discrimination based on gender or sexual identities . Therefore, in addition to responding to the needs of people who had experienced mental distress, dp also endeavoured to operate in a socially inclusive manner and to be responsive to people’s experiences of a range of social marginalisations and exclusions. In addition to providing user-led training for health workers and user-led research and evaluation of health services, dp also endeavoured to provide direct support to its own members. This support was provided through initiatives such as Experiential Human Rights Training in Action, which provided members with training in human rights activism , and Partners in Education and Empowerment for Social Inclusion (PEESI), comprising a number of short, skills-based vocational training courses such as jewellery-making, computer training, and English language classes.

Organisations such as dp, which had been selected to receive funding from the Pathfinder Programme, needed to evaluate their work. This means that dp were also a research cohort and in a position to collect evidence about the benefits of social enterprise organisations that are led and run by people with lived experience of mental distress. Among the members of dp we established a team tasked with evaluating the work of the organisation. We called our evaluation team the ‘So What’s Changed? Evaluation Team’, or SWC?ET for short. The purpose of SWC?ET was to evaluate the impact of the work undertaken by dp from the perspectives of its diverse members who had both used and delivered the services that the organisation offered. As a founding member of the organisation, I was particularly invested in this evaluative process. I decided, with the approval of the other members of dp, that the evaluation would also serve as the topic of my PhD research.Footnote 4

Our commitment to representing the diverse perspectives of our members was in accordance with the recommendations of the British Psychological Society (BPS) to promote the inclusion of people who use the services being evaluated. According to the BPS (2008), this should include working with and seeking independent views of minority-group members about their experiences of accessing services. The BPS (2008) also recommends being critical of those who define which outcomes are valued and pursued, and whether these reflect the diverse needs of the people who use such services. Central to our undertaking of evaluation was a commitment to the democratic participation of all members of the evaluation team. To do this, we recognised the importance of employing an appropriate methodology.

Three Tensions Challenging Our Commitment to a Participatory Ethic

Fals Borda (1995) described PAR methodology as ‘community action’, meaning that participatory methods are underpinned by a commitment to democratic engagement. The central intent of democratic participation is ‘rule by the people’ who are involved. Diverse interests and concerns lead to challenges when striving for consensus decision-making at every step in the research process. Whilst the generation of data may be negotiable and transparent, the analysis and representation of findings requires expertise, or otherwise requires knowledge sharing in discussions that are time-consuming (and potentially not of crucial interest to all participants, or to those who may not see the personal benefits of such an investment of time and energy). In democracies, such challenges are often resolved through stakeholder representation, but in the case of PAR, decisions being taken without careful dialogue subvert the very essence of participatory engagement. PAR processes are supposed to be influenced by co-learning and mutual decision-making, and by giving attention to social and relational dynamics. In the remainder of the chapter we discuss three tensions that challenged our commitment to a participatory ethic and the ways in which we responded to them.

Tension 1: Voice and the Requirement for Anonymity

In my capacity as a member of the evaluation team, I proposed using participatory video production, an activity that facilitates the participation of marginalised groups; members of a community are brought together to create a video that explores issues that are of concern to them (White, 2003). Unlike professional movie-making projects, participatory video is primarily about the process rather than the final product (Dudley, 2003). Its purpose is to empower individuals and groups to take action to solve their own problems (Bery, 2003). In the context of the aims of SWC?ET, members of dp agreed to produce videos that focused on aspects of their everyday experiences and the impact of their involvement in the organisation.

Before we attempted to produce a video, we spent time learning how to use the video cameras and developing storylines. In the process, it emerged that the topics of interest to some of the members, as well as the content that they wanted to explore, were not immediately suited to the evaluation task. This prompted discussions during which we revisited the aims of the evaluation project, and how the participatory video production activity could be used to document dp-related outcomes in a way that also reflected what mattered most to dp members. At this point, the process stalled. It was difficult for members (including those participating in SWC?ET) to see properly how this methodology complied with the evaluation task whilst simultaneously also enabling them to articulate important aspects of their individual experiences. It was clear to me that we needed to explore alternative methods.

I came across a reference to body-mapping exercises in literature on participatory video production (Lunch & Lunch, 2006) and was interested in exploring its potential. Body mapping involves tracing an outline of the body as a starting point for exploring issues of personal significance. The method was developed in South Africa to help people talk about the social, emotional, and physical aspects of their experiences of living with HIV (Brett-Maclean, 2009). Body maps are life-size human body images created through a process of

using drawing, painting or other art-based techniques to visually represent aspects of people’s lives, their bodies and the world they live in. Body mapping is a way of telling stories, much like totems that contain symbols with different meanings, but whose significance can only be understood in relation to the creator’s overall story and experience. (Gastaldo, Magalhães, Carrasco, & Davy, 2012, p. 5)

Members of SWC?ET were enthusiastic about trying the body-mapping method, so the team decided to incorporate into the body-mapping process questions that would enable members to reflect, not only on their current, but also on their past circumstances and hoped-for futures. These questions were co-developed by members in a diagrammatic representation of a body map recreated in Fig. 24.1.

Fig. 24.1
figure 1

Body mapping evaluation tool (Bm-ET)

Full size image

Members worked together over a number of days to produce their body maps. It was remarkable seeing how successful this process was in engaging members in the difficult work of recounting personal experiences that were hard to talk about. Furthermore, because the body mapping exercise allowed members to share their experiences with others in the group, it created opportunities to receive empathetic responses from each other. This was important because concern for their well-being had not always featured in other people’s responses to them. It was notable that, in the process of creating the body maps, some members communicated traumatic experiences through various visual depictions, which they were not always willing to talk about in the group discussion of the body-mapping process.

When the body mapping process had been completed, it occurred to members that their engagement in this activity could be used as the material for participatory video production. Members then set about co-creating videos that documented their experiences of participating in the body-mapping process. A member of the group who had professional editing skills assisted members with adding additional material to their videos, such as music and narration, to complement the visual information. The body-mapping and video production process were useful methods for engaging members, to enable their voices to be heard, that afforded them a level of control over the construction and presentation of their personal narratives. These methods, however, also raised ethical concerns regarding anonymity because such visual data makes it possible for people to become individually identifiable.

While anonymity is intended to protect participants from the harms associated with being identified , Parker (2005) argues that one consequence of our attempts to conceal participants’ identities is that it denies them ‘the very voice in the research that might originally have been claimed as its aim’ (p. 17). In such instances, Burton (2013) recommends that we prioritise relationships between the people involved in the research over administrative protections, especially when working with the ‘vulnerable , marginalised , oppressed, excluded and invisible’ (p. 804). Following Burton’s (2013) advice we engaged members in discussions of the various concerns regarding the risks associated with being individually identifiable and the strategies that we might employ to protect members’ identities.

Members felt very strongly that their stories were best documented through the body maps and videos that they themselves had co-produced, although they had different opinions about whether or not they wanted to be identified . Two members insisted on claiming ownership of their stories and did not want any individually identifying information to be changed or removed. In fact, these members went so far as to upload their videos on the internet. Other members wanted to share their contributions with their partners and with people in their intimate social circles. While it was important to these members to be identifiable to their own social circles, they did not wish to be identifiable in the public dissemination of the research. By contrast, one member decided to remove her video from the data corpus altogether. Instead of forcing a one-size-fits-all approach to issues of confidentiality and anonymity , as is often required in ethics protocols wherein every participant is regarded as needing the same protection, we chose to tailor these according to the wishes of each participating member. I have undertaken to remain in contact with the members who took part in these activities and continue to seek permission from each of them prior to my sharing data in any way. This illustrates the ethical imperatives for gaining ongoing consent for any new use of material not previously negotiated. The commitment to the right of participants to make decisions regarding the use of their data has continued beyond the lifetime not only of the evaluation , but also of the dp organisation, which sadly closed in 2013.

Tension 2: Analytic Complexity and Interpretative Authority

Following the body-mapping and participatory video production process, we conducted a focus group discussion in which members were invited to reflect on their experiences of taking part. The discussion was recorded and then transcribed verbatim. We then conducted a thematic analysis (Braun & Clarke, 2006) of the focus group discussion, yielding a summary of members’ accounts of the participatory process. I presented this summary to the members who had participated in the body mapping and participatory video process with a view to obtaining their views on the emergent themes. In participatory inquiry, member checks are an important strategy for verifying findings. Unfortunately, members found our academic approach to the analysis to be dry and unengaging. We realised that we would have to explore alternative methods of analysis so that members could be involved properly in this part of the research. The trick was to come up with a method that would provide for systematic and sufficiently rigorous analysis while still being meaningful and engaging. And, in addition, we were also concerned about remaining as close as possible to each person’s voice. How could all this be achieved with minimal intervention on our part?

The Listening Guide (Gilligan, Spencer, Weinberg, & Bertsch, 2003) is an analytic method that focuses on voice and relationality. It argues that ‘[t]he collectivity of different voices that compose the voice of any given person … is always embodied, in culture , and in relationships with oneself and with others ’ (Gilligan et al., 2003, p. 157). The Listening Guide process involves sequential listenings, ‘with each listening tuning into a particular aspect’ (Gilligan et al., 2003, p. 159). It is an appropriate approach to analysis in research concerned with members’ diverse perspectives and experiences. This is because each listening guides the listener ‘in tuning into the story being told on multiple levels’ (Gilligan et al., 2003, p. 159). It also requires listeners ‘to experience, note, and draw from his or her resonances to the narrative’ (Gilligan et al., 2003, p. 159). In order to proceed with the Listening Guide method, we asked members to formulate an ‘I-poem’. This involved reading through the focus group transcript and tracing how they had represented themselves in the discussion. Members were asked to pay attention only to the use of the personal pronoun ‘I’ and then to identify how they had positioned themselves in each instance. I-poems are an invitation to speak in the first person, and it was heartening to see how the trial of these ‘I-poems’ led to members’ enthusiastic engagement as they began to hear their voices in the analysis of the focus group transcript.

Whilst the I-poems process was underway, I happened to read something that Judith Butler (2001) had written regarding the recognition of the self, and it resonated with me. According to Butler (2001, p. 22):

[R]ecognition cannot be unilaterally given. In the moment that I give it, I am potentially given it, and the form by which I offer it is one that potentially is given to me. In this sense, one might say, I can never offer it, in the Hegelian sense, as a pure offering, since I am receiving it, at least potentially and structurally, in the moment, in the act, of giving.

For Butler (2001), recognition is only possible in the context of a relationship with an other . This led me to the realisation that one cannot have ‘I-poems’ without having ‘You-poems’. Furthermore, as the ‘you’ is sometimes a collective, consideration also should be given to ‘We-poems’, and that ‘They-poems’ would be necessary for understanding the person in relation to the collective experiences of others. I also thought that ‘It-poems’ would be useful for exploring the ‘objectified I’. I put these ideas to the group and the members agreed that it would be useful to explore what we termed ‘Expanded I poems’.

An interesting observation that emerged from our experimentation with the ‘Expanded I poems’ was the comparisons that they afforded. For illustrative purposes, we have included two ‘You poems’ that were developed during the data analysis phase of the evaluation project. The first poem is a reflection on the experience of participating in the body-mapping and video production process. It suggests that the member experienced these activities as enabling relaxed engagement, and that the member was more willing to self-disclose when they felt that they were not being judged.

Verse

Verse You know I don’t mind doing it you have some control over what you want to keep inside, yeh, hmm …. you feel quite vulnerable you put everything down you see when you see you know … weird talking to the camera you know just amongst friends just talking you put the film there in the background you know and just talk about it you feel more relaxed

Of particular relevance to the evaluation research were the comparisons that emerged between members’ lives inside and outside their involvement in dp. This is illustrated in the next poem in which a member reflects on the experience of vulnerability inside and outside involvement in dp.Verse

Verse You’re not being judged as well you know because you’re able to talk about you see, because you know that people doesn’t judge you, but then you won’t be judged that much as you are outside you know in the public

Montero (2000) calls for the researcher’s role to be redefined in relation to the ‘other ’ during PAR processes, recognising others in their own right as both the subject and the object of research; Freire (1970) describes the constantly shifting dialectical processes between objectivity and subjectivity as being necessary for counteracting and challenging oppression both within and without. With these ideas in mind, we counted the number of lines each member contributed to each of the expanded I-poems in order to observe the input of each member relative to the input of each of the other members. From this we ascertained that the participation of individual members in the focus group was skewed in relation to their gender and ethnic identity . The members whose voices were least heard had experienced the greatest levels of exclusion. Through this, we became aware of the subtle ways in which some people’s voices may continue to be less evident in research products, even in approaches that are explicitly designed to be inclusive . Interestingly the level of participation of individual members when checked was not skewed in this way within the body-mapping and participatory video production processes. 

Tension 3: Confronting the Limits

Writing up the formal evaluation report, my PhD thesis felt disconnected from the realities of the processes in which we had been engaged. I recalled that connection, and disconnection, had emerged as important elements of members’ experiences. This prompted me to reflect on the implications, for a participatory ethics, of writing in isolation from the others with whom I had journeyed up until this point. Montero (2000) notes that in PAR one needs a systematic returning of the knowledge produced to those who co-produced it, thus exchanging the knowledge and know-how of the people, and the knowledge and know-how of the researcher. This co-production yields both new scholarly knowledge and new ‘ordinary knowledge to be applied in everyday actions’ (Montero, 2000, p. 141). This requirement also prompted a dilemma that could not be overcome. Although it was important to me to keep members informed of the new insights I was gaining as I wrote up the material, they were confident that we had met our responsibilities in terms of the evaluation, and felt that the academic write-up was my responsibility rather than theirs.

Writing this on my own gave me an opportunity to reflect on my own thoughts and feelings, and particularly as they pertained to the writing process. It was at this juncture that I encountered a sense of shame emerging from feelings of inadequacy. Fossum and Mason (cited in Pattison, 2000, p. 5) describe shame as:

[A]n inner sense of being completely diminished or insufficient as a person. It is the self judging the self. A moment of shame may be humiliation so painful or an indignity so profound that one feels one has been robbed of her or his dignity or exposed as basically inadequate, bad or worthy of rejection.

The feelings of shame that characterised my experience of the writing process made me pause and consider whether the members had felt the same way about their own contributions. I also wondered how useful it was to dwell on these feelings. Freire (1970) argued too much subjectivity makes us sentimental, leading to a lack of effectiveness, while too little subjectivity makes us distant and lacking in sufficient attachment for a thorough engagement in the liberatory struggle. Martín-Baró (cited in Aron & Corne, 1996) argued that liberation is first and foremost a practical task, but how do we liberate others without first liberating ourselves from our own internalised oppression and the attendant thoughts and feelings that foster it? Perhaps the answer lies in his observation that the truth ‘can become a task at hand: not an account of what has been done, but of what needs to be done’ (Martín-Baró cited in Aron & Corne, 1996, p. 23, italics in original).

Finally, I also had to confront the difficulty of constructing a coherent narrative of findings that were stubbornly contradictory. For example, connection-disconnection was one of the salient continuums (themes) in members’ accounts of fostering interpersonal relationships. Knowing-not knowing was a continuum related to members’ accounts of learning and skills development, and taking part in paid and unpaid work were both important to members’ sense of self, as were their experiences of living with and more often without certain material possessions. Perhaps these contradictions are not so much things to be overcome as a reflection on the outcome of the democratic participation of diverse members. Reason and Torbert (2001, p. 5) encourage practitioners of participatory research ‘to forge a more direct link between intellectual knowledge and moment-to-moment personal and social action’. Similarly, Grande (2004), a Native American scholar, has argued that ‘one of our primary responsibilities’ is to ‘link the lived experience of theorising to the process of self-recovery and social transformation ’ (p. 3), and Parker (2005) has called on critical researchers to engage in ways that ‘open up alternative accounts rather than shut things down’ (p. 148). Presenting alternative accounts in both the form and content of my thesis was my way of striving towards these ideals.

Conclusion

We need to devise a more complex ethical framework to accommodate our needs; one that facilitates interdependent, democratic, and negotiated participation that is able to evolve during the research process. We also need to be critically reflexive of the methodologies we employ. As we have demonstrated, whilst PAR aspires towards democratic and inclusive engagement, practice always falls short of the ideal. This highlights the importance of being attentive to the participatory process whilst it is taking place. In telling our story from the field , we describe instances in which we had to negotiate, and then renegotiate, the process of the unfolding research. We also recount moments in which being ethically responsive to the abilities and interests of the members required revising and co-developing new methods that would facilitate equitable and meaningful engagement. We describe the methods that we co-developed through tapping into members’ creative potentials. We also reflect on members’ willingness to take risks and to experiment with new ways of doing things, thereby showing the power of individual participants to influence what unfolded. So, whose PARty was this? Clearly, without the involvement of the members of dp, there would have been no party to begin with, but this does not obscure the fact that I obtained significant personal benefit through the successful completion of my PhD. Rather than achieving this ‘on the backs’ (Mampani, 2014) of the participating members, I do think that the resulting tools and products illustrate the embodied and interconnected nature of our journey of knowledge co-creation that we undertook alongside one another.