Photovoice: Beyond Public and Patient Involvement, Participatory Action, and Co-Production in Research

Roisin Mooney; Doreen Joseph; Sayeeda Bashrat; Michaelt Molete; Neil Caton; Kam Bhui

doi:10.4103/wsp.wsp_1_23

COMMENTARY

Year : 2023 | Volume : 5 | Issue : 1 | Page : 59-62

Photovoice: Beyond Public and Patient Involvement, Participatory Action, and Co-Production in Research

Roisin Mooney¹, Doreen Joseph¹, Sayeeda Bashrat¹, Michaelt Molete¹, Neil Caton¹, Kam Bhui²
¹ Department of Psychiatry, University of Oxford, Warneford Hospital, Oxford, UK
² Department of Psychiatry, University of Oxford, Warneford Hospital; Department of Primary Care Health Sciences, Wadham College, University of Oxford, Oxford; Queen Mary University London Global Policy Institute, London, UK

Date of Submission	08-Feb-2023
Date of Decision	26-Feb-2023
Date of Acceptance	26-Feb-2023
Date of Web Publication	26-Apr-2023

Correspondence Address:
Dr. Roisin Mooney
Department of Psychiatry, University of Oxford, Warneford Hospital, Headington, Oxford, OX3 7JX
UK

Source of Support: None, Conflict of Interest: None

DOI: 10.4103/wsp.wsp_1_23

Abstract

There is a need in health services research for better processes that result in an evidence base that is informed by and includes voices of those who have experience of the services in an authentic manner. In the UK, public and patient involvement (PPI) has become a common, and in some cases, a mandatory component of much research pertaining to mental health research, often comprising a group that sits parallel to the research and advises on various processes. More recently, PPI has extended beyond a consultancy model to be more collaborative, with language such as participatory research and coproduction permeating the literature. However, there is often a little clarity as to what these terms represent in reality, the impact that they will have on those taking part, and consequently, the body of evidence that we draw up on to inform how mental health services are designed. We need to do more to enable those impacted by poor mental health to contribute to research in a meaningful and fulfilling way. This article was coproduced by the Co-Pact patient and public research group, and shares how photovoice as a research method may advance the current understanding of how patient voices are represented in mental health research.

Keywords: Creative methodology, mental health act, mental health research, participatory processes, photovoice

How to cite this article:
Mooney R, Joseph D, Bashrat S, Molete M, Caton N, Bhui K. Photovoice: Beyond Public and Patient Involvement, Participatory Action, and Co-Production in Research. World Soc Psychiatry 2023;5:59-62

How to cite this URL:
Mooney R, Joseph D, Bashrat S, Molete M, Caton N, Bhui K. Photovoice: Beyond Public and Patient Involvement, Participatory Action, and Co-Production in Research. World Soc Psychiatry [serial online] 2023 [cited 2023 Jun 10];5:59-62. Available from: https://www.worldsocpsychiatry.org/text.asp?2023/5/1/59/374610

Photovoice as a Collaborative Research Method

Photovoice (PV) as a methodology positions the participant as an active agent in research, rather than as an object of research. The person's subjectivity, experiences, and world views are seen as valuable contributions – as experience data – and not to be dismissed as subjective and nongeneralizable knowledge.^[1] Participants offer data in the form of photographs and work collaboratively with researchers to develop captions, providing context and narrative to the images. The participant chooses much about the process, including the form photography (whether to take photographs on their own camera, a phone, or use a disposable camera) and can influence other processes in the research with other participants, like determining the focus of the research question. The participant voice is the uppermost and kept at the heart of ongoing discussion, analysis, interpretations, and conclusions at all levels of the research. Underpinning this method is the principle of empowerment and proactive involvement to not only shape research but to also influence policy and practice through lived experience, as proposed in our current study.^[2],[3] In our experience, how participants impact and are impacted by PV have a refreshing and transformative element that extends beyond research into the community and society at large. This reflects the current literature which argues for the use of PV in recovery-orientated research.^[4]

Mirroring what happens in research, the views of those with mental illnesses have often been disregarded or invalidated in the design of services. We need to provide an opportunity for this population to be heard and to share their experiences in a safe space and communicate the benefits and potential challenges of doing so explicitly.^[5] Using a creative methodology, that is empowering and rewarding, allows experiences to be shared in an authentic manner rather than being interrogative or potentially experienced as exploiting racialized groups to gather knowledge. The aim is to ensure epistemic justice throughout the research process, not only to reflect the value of such knowledge but to also ensure such knowledge is not misrepresented or misunderstood, and is applied to change practice and policy in ways that make sense to the potential beneficiaries. This requires researchers to give up power, status, and decision-making authority, and sharing all these with the participants.^[3]

Co-PACT: A Case Study

In the UK, it is well-established that people from racialized backgrounds are detained at a higher frequency than their counterparts.^[6] The mechanisms behind this disparity are complex and have persisted over time. Initiatives to positively impact this inequality need to include knowledge-experience data as valued perspectives from across the systems, foregrounding the lived experience of those who are most impacted. Collecting such data using PV will help identify what drives these inequalities and what might be done to both meaningfully and sustainably reduce them.^[3]

In our study, “Experience-based investigation and Co-Design of approaches to Prevent and reduce Mental Health Act Use: (CO-PACT),”^[3] we combine PV with experience-based codesign to help understand and reduce the excessive detention of racialized populations. The ethos underpinning this study views participation as the beginning of an ongoing partnership, a mutually respectful collaboration that aims to have a positive impact on participants during the research and a powerful impact on practice and policy. This opposes the view that research participation is framed as a data mining exercise. Traditionally, studies have a public and patient involvement (PPI) reference group, who act as a consultation group to ensure that the study is being conducted in a way that is ethical, appropriate, and captures key concerns from their perspective. In addition to having a PPI reference group, our study embeds those with lived experience at all stages of the research process. PV entails participants taking images that relate to their experiences, developing captions, and discussing them. There are many ways in which this methodology may be delivered, and in recent years, it has gained popularity owing to its transformative power and ability to capture nonverbal information. This is of particular importance for the engaging marginalized populations to contribute experience data surrounding potentially traumatic experiences. We designed a PV model that involves three workshops: an induction and consent workshop, a reflective workshop in which images are captioned and discussed, and a group discussion of the knowledge shared. In the introductory workshop, we share the aim of the study, and after that, participants are in the driving seat regarding which experiences they want to share using images and in what level of detail. The third workshop provides a unique opportunity for participants to discuss their experiences with others who have been in similar situations and begins to signal to the researchers which images are salient or may have similar underlying meanings. This is akin to the preliminary steps of polytextual thematic analysis^[7] in identifying patterns across datasets, and is led by the participants themselves as opposed to the research team. PV gives participants the opportunity to foreground and lead what and how their images are taken, interpreted, and analyzed. They decide what they will photograph and how they define their images (by captioning them, whether just a word or a phrase to a whole poem or song). They form the first level of analysis themselves individually by adding context to the images, followed by a second level of collaborative discussion of their images with other participants. This ensures that their views determine the interpretation and analysis of data rather than relying solely on researchers or other stakeholders, for example, clinicians, police, and commissioners. This affords participants, who were mostly research naive, and the role of peer researchers. This mirrors previous research that defines PV participants as critical thinkers, sensitive to ethnic health inequalities, and other social determinants, which adversely impacted on racialized peoples' lives. This played out in their images and captions; their discussions were the first stages of analysis and interpretation.

To date, participants have been very positive about participation in the study with many signing up to an email newsletter about the study and responding to invitations to assist with the dissemination of experiences and preliminary results pertaining to the study.

Processes of Involvement, Participation, and Empowerment to Embed Our PPIRG in the Research

As highlighted by Pearce, the process by which authentic power sharing and the involvement of a diverse range of people with lived experience were rarely simple or straightforward, littered with institutional challenges from many angles (Pearce, 2021). From inception, the study sought to ensure that service user and carer voices were integral and empowered to meaningfully contribute, by having a British African–Caribbean woman who has experience of being detained under the Mental Health Act as PPI co-applicant, who provided input into the initial grant proposal. To ensure that she was considered equal to other members of the team, we ensured that she was employed on a formal fixed term research contract at Oxford University in the same way as other members of staff on the project, as opposed to having her time reimbursed by a series of one-off payments or on a casual contract. This was done in the spirit of equality and to avoid contributing to or perpetuating an “us versus them” feeling that has been reported in previous PPI work.^[8] She is the PPI Lead and cochair of the Patient and public involvement research group (PPIRG), the lead author on this paper, has coauthored papers, and contributes to project meetings on a weekly basis. Weekly meetings provide a “touch base” opportunity for all members of the team to reflect and share concerns, inclusive of those leaving PPI and participatory elements, and those with lived experience. Previous work highlighted the importance of creating a “safe space” and acknowledging the emotional investment to this work;^[9],[10] the weekly meetings permitted us to this in a less formal structured way than other project meetings.

Patient and Public Involvement Research Group (PPIRG) comprised people with lived experience of poor mental health, and possibly detention, meet periodically to offer a steer and provide a critical friend to the study. We had aimed to have representation from all eight sites that Co-Pact is recruiting from; however, this was exceedingly challenging. Despite offering reimbursement and meeting online to potentially allow more accessibility and flexibility for meetings, many people we spoke to were not in a position to be able to process the information or commit to regularly attending meetings owing to the number of life events they were contending with. We successfully recruited five people who have regularly attended meetings and been in contact with the PPI lead. The PPIRG has been coproduced its Terms of Reference, which included items such as the timing and format of meetings and documents to ensure that information to be considered was provided in an accessible way. This was an important exercise to both set and manage expectations, which is integral to successful collaboration.^[11] The PPIRG also coproduced feedback questions that those taking part in the research would answer. A few of the members are experienced in both conducting and participating in research, as well as sitting on other advisory panels, for example, as carers, university peer researchers, and peer support groups. They expressed interest in being observers in PV workshops (face-to-face or online) and to be involved in coding and analyzing the data in coauthoring blogs, articles/papers, as well as receiving monthly newsletters to keep abreast of the study developments, and no doubt will be involved in dissemination of findings. To date, the PPIRG has offered recruitment strategies and sources for PV participants. They have suggested recruitment from their professional and social networks, for example, Roshni Ghar, a mental health charity that supports South Asian women in culturally appropriate ways. Another postured whether the study could involve people who are sensory impaired. We concluded that it was possible to make reasonable adjustments.

In addition to the opportunities to contribute to the research beyond PPIRG meetings, we have also held a joint meeting of the PPIRG and Advisory Board to enable the two to connect at important junctures of the project. This meeting was challenging owing to number of people who attended and the technical challenges of operating in an online environment. We received mixed feedback from attendees and intend to have a separate premeet briefing session with our PPIRG colleagues and the chairs of the Advisory Board before the next joint meeting to ensure that everyone is well-informed and able to contribute meaningfully. Such challenges are anticipated and seen as learning opportunities to be discussed. It is indicated in some of the literature in health care that PPI may be somewhat glorified, and the true challenges of doing such work on the ground are often not present in the final reports.^[12]

PV and PPIRG give service users (and staff) the chance to reflect on their roles, not only as participants in research but also in their community and wider society, especially regarding why and how racialized people get detained disproportionately. This is where their participation with other stakeholders in the experience-based codesign workshops will be evaluated for their impact and in the development of interventions to achieve the study's aims: to reduce and prevent the use of the Mental Health Act.

The Participatory Experience: What People Told Us

How participants and PPIs impact and are impacted by their involvement in research align with Budig,^[5] who reflected on what participation in PV actually means for participants. They conclude that evaluating this potential can increase our understanding of empowerment processes and generate valuable implications for future research using PV. In Co-Pact, we found that participants were delighted to take part in research that they would not normally have thought about or been given access to. An opportunity to assist with raising awareness of the study was taken up by three participants from different sites, who volunteered to be guests on a radio show about mental health, “What shape are you in?” Alongside a researcher and coresearcher, they spoke articulately, frankly, and passionately about their journey to detention, being detained and its horrors, and what they wanted their narratives to achieve, namely, “reduce and prevent” the need for detentions. Budig also highlighted that PV fosters solidarity through newly formed friendships around a common cause, that spurs them to proactively “make a difference” by influencing policies and practice.^[13] They particularly expressed gratitude for Co-Pact providing this opportunity and shared how much they enjoyed the PV workshops and further input.

Psychological Safety and Trust

For many, it was the first opportunity to share their experiences; indeed the novelty of this opportunity was recognized among participants, and it was notable that participants cared for each other's well-being, even though they may only have met for the first time through PV workshops. Part of a researcher's responsibility is to be aware of the possibility of negative or unintended impacts from participating in research. Potentially owing to a combination of the “safe space,” creative methodology, and the environment, some participants disclosed information that they had not previously discussed with their clinical teams. For example, an eating disorder was picked up, and another shared the current experiences of being groomed. Our researchers escalated their safeguarding concerns to the relevant/appropriate services responsible for the participants' care. This is an important consideration due to the nature of our study on the target group: people who had been recently detained. There was always the possibility that their recovery journey may be fragile due to being so recent; therefore, a greater sensitivity to this group is required; such ethical concerns were pointed out from the beginning.

Successful collaboration across this research, between the research team and PPIRG in designing the research, between the research team and the participants in generating data and for those with lived experience in the advisory board, was reliant on taking a whole system approach. In Co-Pact, we shared, promoted, and maintained an ethos of authentically foregrounding perspectives and voices from those from marginalized backgrounds with experience of being detained. Being both open and receptive to feedback, where parts of our work may have countered or undermined, this ethos was an important element of this. Having difficult conversations, where opposing views were shared and worked through, was integral to create a safe space where participants were able to share their stories.

Conclusion

It is important to ensure that PPI is not conducted in a tokenistic, consultancy manner, where the sole representation of lived experience lies in a PPI group, particularly when conducting research that pertains to vulnerable, marginalized groups. PV and codesign are participatory methodologies that have been employed in such a way that facilitates voices with lived experience of being detained to authentically permeate every level of the research. In our work, this extends beyond the PPI group to the coinvestigator team, the advisory board, and the participants themselves. Our research has been designed in collaboration with several PPI representatives to ensure that people who are not often able to access research are able to take part, and that their participation is authentic, empowering, and enjoyable as opposed to exhaustive and coercive. None of these processes have been simple or straightforward, and have entailed many reflective conversations across the research team, and constant revision and flexibility. It is of particular importance that all involved have a clear understanding of their roles, responsibilities, and boundaries throughout, and that these may change and form a part of ongoing open conversation. We advocate that future research adopts a similar ethos to advance the evidence base on which services are designed to more accurately represent the views and experiences of people who are considered the exceptions.

Financial support and sponsorship

Nil.

Conflicts of interest

There are no conflicts of interest.

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