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Mental health related stigma, within widespread discrimination and exclusion,1 inhibits many from seeking help.2–4 Moreover, conventional therapeutic methods relying on the spoken word only may not elucidate the full range and nuances of lived experiences.5 6 The use of photography alongside narratives (photovoice) can provide a powerful means for ethnic minority service users and their carers to communicate these experiences, with photographic displays to a broader audience contributing towards destigmatising mental illness.
Photovoice can facilitate an authentic and meaningful method of co-creating/co-producing knowledge in healthcare.2–9 Our workshops were hosted at community centres in London and Manchester (England). The project was explained verbally and through the distribution of information leaflets, while any queries were addressed. We then sought informed consent, distributed disposable cameras and notebooks with prepaid envelops for their return, before asking participants to take photos (post-workshop) of their realities of severe mental illness or its treatment. Participants were reassured that there were no ‘right’ or ‘wrong’ approaches and no professional photographic training was provided to ensure that photos represented their views. Photos from returned cameras were then developed for subsequent workshops (approximately 2–3 weeks later), where participants selected three to five photos for individual reflection guided by photo-trigger questions. Any individuals’ faces shown in images, including participants’, were blurred unless they signed a separate consent form. Based on their narratives, photo captions were produced with participants individually and closed exhibitions facilitated at the community centres to protect participants’ identity and to give the option to amend their captions before the public exhibitions (figure 1).
Seven workshops were hosted over 6 months, with three subsequent exhibitions at community centres and two public exhibitions split between London and Manchester. Twenty-one people participated in the project (table 1). Post-it notes provided a simple, unstructured and anonymous feedback method after each workshop/exhibition, revealing how photography was seen as an accessible and creative means to communicate priorities, while exhibition delegates overwhelmingly agreed that photos and captions were well displayed to communicate mental health narratives (see table 2). Public exhibition attendees represented a broad range of stakeholders, including service users, carers, charity representatives, healthcare professionals, journalists and policymakers.
The number of photographs, photo-trigger questions and dissemination routes had to be limited to facilitate sufficient engagement and meet strict budget constraints. However, these restrictions also encouraged participants to concentrate on what mattered most to them (table 2). Thus, participants shaped the process by representing their lived experiences and main priorities, reflecting on these through photography, and pursuing wider impact by dissemination at exhibitions. This contrasts with evidence of the many projects claiming to ‘co-create’/’co-produce’ knowledge but that, in reality, employ service users as consultants merely to legitimate the researchers’ findings.10–16
Photovoice offered the opportunity to reflect on potential consequences and sources of illness or barriers to recovery, including intersecting forms of discrimination along racial, ethnic, class, gender, age and other lines (figure 2 and brochure: https://synergicollaborativecentre.co.uk/wp-content/uploads/2019/02/Synergi_Photovoice_Brochure_Updated-Nov-2018.pdf).
Service users also focused on their treatment with photos of recovery often positioned alongside those of suffering (figure 3). As a collective exercise, in which participants frequently valued the opportunity to share their personal images and narratives of mental illness, this illuminated how other participants had also confronted seemingly ‘unalterable’ illness states; yet, persevered through adversity.
Treatment options should be informed by people’s capabilities; things of value that they can do as a consequence of possessing certain resources/skill sets (accumulated through lived experiences).17 18 Many participants considered how photography provided an empowering platform from which to communicate sensitive issues (table 2). This was consistent across a diverse sample of ethnic minority people and mental illness diagnoses (table 1). The exhibitions then enabled their visual testimonies of common humanity and creative potentials to further destigmatise the issue publicly.
Some organisations struggled initially to participate due to limited resources, so were subsidised for helping to recruit people. There was also a request for further engagement that we unfortunately have been unable to pursue at the time of writing since funding for this particular project ran out (table 2). Another issue was potential self-selection favouring community centre attendees. However, hosting workshops locally to participants was vital for increasing accessibility.
Further evidence on the effectiveness of photovoice is limited.4 A randomised control trial3 demonstrated that a photovoice project significantly reduced internalised stigma after 3 months; however, longer follow-up periods are needed. Furthermore, the trial was conducted predominantly with the white majority population (in USA), so photovoice’s effectiveness will also need to be tested with ethnic minority people with mental illness.
The authors thank the community partner mental health organisations in London and Manchester for all their support and the strong commitment of the participants, without whom the project would not have been possible. The authors also thank Queen Mary University of London’s Centre for Public Engagement which funded this project and whose support was solid throughout the project from the planning to the implementation and evaluation stages.
Collaborators African and Caribbean Mental Health Services (Patrick Cooper; Patrick Harris; Verona James; Oghenekome Ogowewo; Anthony Stephens; Jacqueline Thorn); LMCP Care Link (including participants); Mind in Haringey (including participants); Psychosis Therapy Project at Islington Mind (Annette; Martin; Nulifer Duruk-Ferreira; Manisha Pandey; and other participants).
Contributors KH was the principal investigator of the photovoice project. KH, JF, KB and JN were involved in the conception and design of the project. KH, JF and GMW organised and facilitated the London-based workshops and exhibitions, ND assisted with the public exhibition in London. JR, MH and JN organised and facilitated the Manchester-based workshops and exhibitions. KH and ND co-managed the budget. KH conducted the analyses of descriptive statistics and feedback and drafted the manuscript. The authors engaged in critical interpretation and commented on drafts of the manuscript in the context of public engagement and wider literature. All authors approved the final version.
Funding The photovoice project reported in this paper was funded in the Queen Mary University of London’s Centre for Public Engagement Large Grant Award 2017. The project also takes part of the emerging work of the Synergi Collaborative Centre, a five-year national initiative funded by the Lankelly Chase Foundation to build a knowledge hub on ethnic inequalities and multiple disadvantage in severe mental illness in the UK. The funders had no role in project design, collection, analysis or interpretation of data, writing of the report, or in the decision to submit the paper for publication.
Competing interests None declared.
Patient consent for publication Not required.
Ethics approval Ethical approval was not sought as our project was not conducted for research purposes (this was a public engagement initiative engaging participants as partners to review mental health services and set priorities for the future). We followed relevant guidelines for best practices in working with vulnerable adults and the principal investigator obtained a Disclosure and Barring Service check. The project was also explained in detail to all participants in introductory workshops and any concerns addressed. Prior to taking part in the project, participants signed informed consent forms. The participants had the option to withdraw from the project at any time. All individual data has been anonymised and/or aggregated as summary statistics and we do not include any identifiable personal information about individuals (apart from names of the organisations and participants that wanted and consented, through conversation with the mental health organisation staff, to have their work acknowledged as collaborators).
Provenance and peer review Not commissioned; externally peer reviewed.
Data availability statement All data relevant to the study are included in the article.