Abstract
Photovoice is a participatory research method in which people identify, express, share, and advocate for their needs and experiences through images and discussions about those images (Wang & Burris, 1994). Empowerment education for critical consciousness, feminist theory, and documentary photography provide the theoretical basis for the process that foundationally has three main goals. These include: (1) to enable participants to record their experiences, (2) to promote critical dialogue and knowledge about personal and community issues through the discussion of images, and (3) to access policy or decision makers with experiential images taken by participants (Wang, 1999). Photovoice generates data, and that data (e.g., the photos) is intended to serve as a tool to generate action or change when seen by others (Liebenberg, 2018). In this article, we describe the process of dissemination – moving photovoice results to action – in detail, using a photovoice project on HIV stigma as a case study. In doing so we aim to advance one way to understand the audience response to photos and stories produced by photovoice a critical but understudied component of photovoice and visual methods overall (Mitchell, 2015; Rose, 2012).
To disseminate findings and help facilitate change, photovoice projects typically include an exhibit of participants’ work. The exhibit can connect participants with change-makers or the broader community (Budig et al., 2018; Liebenberg, 2018; Switzer, 2019). Exhibits generally include photos and accompanying captions, photo texts, narratives, or stories about the photo’s meaning. Ideally, policy or decision makers and community members attend the exhibit to learn about the project’s topic. Sometimes the photographers interact with the audience and explain their work and teach others about their needs (Catalani & Minkler, 2010). An exhibit can raise awareness of an issue, educate viewers, and shape an understanding of the picture takers among those who see the images (Budig et al., 2018; Roger, 2017). For example, participants in Budig et al.’s project - low-income women who documented local food environments - experienced a change in self
The detailed process of creating various strategies for photo sharing and dissemination is a key feature of photovoice, yet remains understudied, and as a result, under shared and taught (Lofton & Grant, 2021). There is a small but growing body of exceptions (Capous-Desyllas et al., 2019; Pichon et al., 2023), yet these pale in comparison to the number of studies that mostly describe the images produced. Such descriptions are valuable, but they do not tell the full photovoice story. Additionally, there are shortages of data and explanations illustrating how decisions are made around what and how to share photos for the largest impact (Evans-Agnew & Rosemberg, 2016; Liebenberg, 2018; Pichon et al., 2023). Often, however, these decisions are complex. For instance, Pichon et al. (2023) outlined a multi-step process of creating a master display and then rotating images for different events based on event type and goal, and to involve all photographers’ images (Pichon et al., 2023).
Relatedly, although action or change are intended results of photovoice, it is unlikely that an exhibit alone can sufficiently catalyze needed change, especially for vulnerable groups of people experiencing multiple disparities. It is critical to raise this discussion to the forefront of photovoice research – and suggest how we can pair photovoice with other elements to support change. Photovoice systematic or scoping reviews describe missing data or inconsistencies in the inclusion of data about participant voices empowerment, and social action (Catalani & Minkler, 2010; Evans-Agnew & Rosemberg, 2016). Participant or community “change” can also mean different things across different populations. In a study among people who were chronically ill, for instance, the investigators argued that self-reflection and identity construction among those who created and who saw the exhibit constituted meaningful change (Koch & Kralik, 2001). Working with women in Appalachia, Bell (2008) defined change as sending letters and images to senators to advocate for improved environmental policies and road conditions (Bell, 2008). Among youth with HIV, van Wyk and Teti (2020) defined change as the medical community’s increased awareness of youth needs regarding their HIV medication adherence (van Wyk & Teti, 2020). We lack substantial knowledge of the different ways to understand the potential changes that can result from sharing of photovoice projects and how to move from project to such change.
In addition, researchers often romanticize participatory visual research and the magic of images, neglecting the details and challenges, and do not sufficiently study the audience (Rose, 2016). For instance, all research findings can unintentionally reinforce problematic stereotypes (Cecchini, 2019). In the context of photovoice, doing so can turn the process into a disempowering experience. Duijs et al. found it very important to pay attention to what participants did not or felt like they could not take pictures of, for example, to try to better understand what their participants wanted others to know about the nexus of race, class, and gender in their lives as caretakers (Duijs et al., 2022). Similarly, Fricas cautions of the dangers of an ahistorical application of photovoice, and reminders researchers to remain aware of how images can be used to romanticize or pathologize participants we try to support (Fricas, 2022).
We also lack data about audiences (Rose, 2012, 2016), or how viewers are affected by exhibits (Mitchell, 2015). This information is needed to move photovoice forward in its reach, and to keep the method true to its feminist and emancipatory foundations (DiEnno et al., 2021; Lofton & Grant, 2021; Mitchell, 2015). There are a small number of growing exceptions to this rule. DiEnno et al. (2021) tested the impact of a photovoice project on city government employees who saw project photos. Pichon et al. described five different ways they captured the viewer experience around HIV stigma (Pichon et al., 2023). Dafilou used action planning to outline the effects of a community planning project in Philadelphia (Dafilou et al., 2022). A similarly small number of projects using other visual methods like cellphilms and participatory video are also beginning to explore the impact of visuals on audience (Kendrick et al., 2021; MacEntee & Mandrona, 2015; Morgiève et al., 2019; Whitley et al., 2020). Although these photovoice, cellphilm, and participatory video examples are excellent starts, we still know relatively little about the exhibit and the audience – as sites of analysis of the impact of photovoice (Mitchell, 2011, 2015). This study builds on the little existing research and fills in some of these gaps regarding photovoice dissemination processes and evaluation by describing a team process of deciding how to move photovoice results to action and change.
The “Reframing Life with HIV” Project
The photovoice project described in this article is called
The theoretical frameworks underlying the project were tenets of resilience and empowerment. Resilience denotes the ability to survive and thrive amid challenges (Luthar & Cicchetti, 2000). Traditional messaging about HIV treatment by health care providers and public health professionals has typically utilized a deficit-based (e.g. “Take your medicine or else”), rather than a resilience-based (e.g., “You CAN take your medicine and it will help you”) framework (Amico & Orrell, 2013). A growing body of work suggests, however, that a focus on challenges alone produces public health messaging that poorly captures people’s full experiences (Herrick, Egan, et al., 2014; Herrick et al., 2011; Herrick, Stall, et al., 2014). The goal of the project was to help men talk about their challenges but
The community-academic research team (researcher – the first author, nurse, several peer educations who were men and women living with HIV including HIV + SGLMOC) had a history of working together for over 10 years when they launched this project. They chose to use photovoice to engage men in this discussion based on their previous success using the method to prioritize and highlight the input and needs of people living with HIV. Community members on the team believed that HIV needed to be reframed from outdated tropes conjuring “danger” and “stigma,” to empowered stories of HIV as “manageable” with life-saving medications. They believed that images would be a powerful way to illustrate this reframing, empower men to take charge of new messaging, and to motivate others to think about their health and HIV in new and positive ways. Relatedly, the original action-oriented goal of the project, which
Below we describe each step of the project and how these steps led the team to make decisions about dissemination and moving the project’s results to action and change: 1. Photovoice, 2. Post project interviews, 3. Documentary/video making, 4. Dissemination of stories to teach others, 5. Project evaluation, and 6. Reflecting on lessons learned and next steps.
Photovoice: Capturing Images and Stories About Life with HIV
Participants met in small groups of three to five men for a total of three sessions. Nineteen self-identified HIV + SGLMOC took part in the project. Participants’ average age was 30 years (range 23-38 years) and they were living with HIV for an average of 5 years (range .5–22 years). In the first meeting men learned about each other, photo ethics (Teti et al., 2012) and the project’s goals. In the second and third meetings, men shared photos and ideas about living with HIV and taking HIV medications with each other and the project facilitators (i.e., first and fourth authors). During the final session, participants also chose pictures to share with other HIV + SGLMOC via an exhibit. Next, the project team organized those pictures and captions and created a draft exhibit, in PowerPoint, to share with participants for feedback. The PowerPoint presentation included 1–3 pictures from every participant and each photo in the presentation had an attached caption. Captions were derived from the words participants used to describe their pictures that were captured in audio recordings of the project sessions.
Key themes among the photos and captions were divided into two domains – challenges and support. Again, given the project’s intended resilience frame, it was important to participants to portray balanced experiences. On one hand, participants expressed their challenges adhering to HIV medications and how these barriers were linked to 1. Poor experiences with HIV testing, which increased their mistrust of medical institutions; 2. Intersectional stigma – stigma related to HIV or illness, race/ethnicity, and sexual orientation; and 3. Isolation and accompanying lack of guidance from family which hurt their access to resources and their willingness to seek help. On the other hand, participants shared the supports that helped them adhere to HIV medications and remain healthy living with HIV. These included 1. their self-care and love, 2. chosen families that helped them take care of themselves, and 3. reframing HIV medication as a positive way to take control of their HIV.
For example, one participant shared an empty bench (Figure 1) to show how isolated he felt when he was diagnosed with HIV, adding, “my partner didn’t want anything to do with me.” He said he wanted to “be the man” but now worried about being perceived as “sick.” He said that he experienced HIV stigma on top of heterosexism and was unsure about how to move forward. When you're Black, male, gay, and on top of that, you have HIV…it is a lonely feeling because, I knew at a young age that I was different, I'm attracted to [men], but I don't know why. But it's an abomination, it's horrible, because I grew up in the church…I've built up this wall now I'm trying to break, but as a black gay man - you're supposed to be strong...but I mean, we're also already counted out. Empty Bench.
Another participant shared his shadow (Figure 2) to describe how he felt invisible and lost with HIV, and how his family worsened those anxieties by “not letting me wash my clothes in the house because I could give the kids AIDS.” Both men explained that stigma and isolation created challenges to medication adherence which in some ways required men to disclose their HIV status to get help. Shadow.
Other men noted that with persistence self-love they could remain committed to their health. One man demonstrated with a picture of a construction site, explaining that the medicine allowed men to rebuild and regrow a new outlook on health amid the challenges that HIV introduced to their lives. Other men described medicine to control their HIV. One participant shared his picture looking off in the distance and noted, “I wanted to express how you can look out into nothing and know that it will be okay, and you’ll be all right.” Another participant shared a picture of sunglasses (Figure 3) to indicate a bright future, “a better image of me” where he was healthier taking HIV medicines and with a new commitment to his health. Sunglasses on PrEP.
The first author drafted an exhibit and showed and discussed it with participants as a group to get their feedback, given the project’s focus on shared learning and decision making to enhance critical thinking about life with HIV among participants (i.e., empowerment education, Freire). Here, an interesting pivot happened. The participants thought that the images were powerful because they showed the context of men’s lives, made the men appear human versus an HIV statistic, evoked empathy for men’s challenges, and showed how men were resistant and resilient amid barriers. As a result of these reflections, they decided a traditional display of images to other HIV + SGLMOC was not the way they wanted to translate their experiences to action. They wanted to teach others (not necessarily persons living with HIV) about their lives. Again, given the empowerment focus of the project, the team believed it was important to engage this pivot and listen to participants ideas and suggestions. After brainstorming about different audiences, the group chose to use their ideas to educate emerging health providers who may lack awareness about HIV, at the primary author’s university. They chose to do this by making a short video that showcased their images and stories.
Interviews: Providing More Context to Participant’s Life Snapshots
The participants believed a film would bring their stories together more effectively for a learner audience than a photo exhibit and thus be a stronger teaching tool. They believed that the video could engage audiences more actively, versus the static nature of the photos – that video could include elements like the men’s explanations of their experiences in their own voices that made them more real, more human. The goal of the film would be to increase people’s awareness of living with HIV and decrease HIV stigma by presenting HIV + SGLMOC as real and complex people with ordinary lives
Thus, the team decided to conduct follow-up individual interviews with participants and use men’s photos as prompts to gather additional context and details to create a fuller timeline of their experiences, that could supplement existing photovoice data. As a result, we submitted a new ethics board proposal to ask additional questions. The team brainstormed questions to include in their interview guide based on key themes that arose in the photovoice project that they wanted to better connect in the video. The team generated questions about men’s experiences with 1. finding out they were HIV positive, 2. HIV testing, 3. telling others about having HIV, 4. their decision to take HIV medicine, 5. HIV-related stigma, 6. organized religion, 7. family, and 8. lessons learned over the course of their diagnosis. Such conversations filled in gaps between, or highlighted, moments captured in the photos.
For example, during the photovoice project, one participant discussed his anger with his HIV diagnosis and “at the world, my past, my relationship with my father.” He focused his images on his journey towards “taking control of the wheel to steer my own direction and my own path and putting more trust into myself and just actually accepting and loving who I am as a person.” He shared images of himself listening to music and at the gym, for example. In his interview, he expanded on some of the more challenging aspects of his life and his health. He said that when he was diagnosed it was “automatic – you’ll be fine” but that he felt scared and without help, like it was “the end of the world,” especially since he was given no resources. He discussed how others in his community expressed “fear” around him and did not understand HIV was “actually treatable.” His family “shut down” on him and his church became a greater sight of confusion. He “grew up in the church” but felt the weight of the “hypocrisy” there and the “people making judgements about his life.” Then, in the interview he came back to the resistance and resilience he photographed, noting that eventually: HIV really taught me how to be strong…It's taught me to keep going, and it has been a motivation factor for me as far as my health. I'm more cautious of what I eat. I make sure that I'm in the gym regularly. And it's also taught me a connection with my kids because I know that they go through things…It has taught me to be an inspiration to them… HIV is going to force you to, you know, recalibrate the way of your thinking, and you must take ownership of your life, and remain positive, and tell yourself that this is not going to define you.
In sum, the interview connected the images to a fuller story of his HIV experiences.
Another participant shared multiple pictures of his family members in the photovoice project to describe the different pieces of his life and how he maintained motivation and accountability to be healthy – indicating his sister calls frequently to ask if he has taken his medicine. In his interview he expanded on these relationships. He said that his niece was born the same year he was diagnosed and serves as a marker of
Documentary: Putting it all Together to Educate Others
The project team sought additional funding to take all the project materials – photovoice transcripts, images, and interview audio and transcripts – and use them to create a short video for students of health professions (pre-medicine, physical therapy, and occupational therapy). The video component of the project was driven by the team’s focus on facilitating empowerment among participants and prioritizing their choices, the group’s goals (increase HIV awareness, decrease HIV stigma) and was informed by an additional theory, Intergroup Contact Theory (Pettigrew & Tropp, 2006). This theory posits that intergroup contact, in this case the exposure of a student to a person living with HIV, reduces prejudice or stigma towards the vulnerable group that is most often othered (person with HIV). For these reasons, intergroup contact has been shown to be an effective component of HIV stigma reduction interventions (Sengupta et al., 2011) and anti-health stigma programs for medical providers (Knaak et al., 2014). Thus, the video was based on the premise that students would ascribe to fewer stigmatizing attitudes if they were exposed to the lived experiences of people living with HIV. The group decided that the core of the presentation would include a PowerPoint presentation showcasing HIV + SGLMOC, their voiced stories from audio recordings, their stories from audio recordings and transcripts, and their photos.
The team decided that in addition to giving students “contact” with HIV + SGLMOC, they also wanted to educate students by helping students understand the complexity of living with HIV and the many social determinants of health, stigma included, that affected prevention and treatment decision making. The final PowerPoint presentation for students was 45 minutes long and included 4 modules: 1. brief introduction to HIV – what it is, how it is transmitted, and what people living with HIV need to do to be healthy; 2. Brief introduction to the social determinants related to acquiring and living with HIV including socioeconomics, education, health care access, neighborhood, and social and community context, including stigma and the role it plays in these experiences; 3. 20-minute video showcasing men’s pictures and clips of men speaking about their images and their lives; 4. Open question and reflection period. Students watched the video during a regular class period of a health research class for pre-health professionals.
Evaluation – Was it Effective?
A complete and detailed report of the film’s evaluation is outside of the scope of this manuscript, but in summary, to evaluate the impact of the presentation and video, students (
Overall, survey results indicated students were less worried about HIV or catching HIV and less fearful or concerned about treating patients with HIV after the class lecture, then before. For instance, pre and posttest comparisons indicated that after viewing the film, 35% fewer students reported being fearful of people living with HIV; over a fifth less students (21%) believed that PLWH were responsible for their illness; a quarter (25%) were less worried about taking vital signs of PLWH and; nearly a quarter (24%, 23% respectively) reported that they recognized that poverty or homelessness could increase HIV risk. Via the open-ended questions, participants also reported learning various things about HIV through the men’s pictures and stories, such as more about their lives and stories, more about how medication can support HIV + SGLMOC, that they are not solely victims, that they can experience a positive range of emotions, and, though, that HIV stigma still exists and hurts HIV + SGLMOC. For example, one student said, “I learned that it is important not to judge people with HIV.” Another noted, “I realized stigma still exists.” Another said, “I found it interesting that family members can act discriminatory towards other family members.” Unfortunately, however in post-test surveys, more participants strongly agreed that “People of certain races/ethnicities spread HIV in our community.” Thus, the training helped limit fear and certain negative attitudes about HIV + SGLMOC but increased the belief that HIV was spread by specific groups of people. This told us that disseminating photos and stories was both effective and potentially ineffective at limiting HIV stigma among emerging health professionals, especially those in a predominantly white institution with limited baseline knowledge about HIV and the social drivers of HIV infection. We also realized that we need more information to understand the depth and complexity of this finding for our audience.
Discussion
Social action and change for individuals and/or communities is an important distinguishing factor of photovoice. Yet, little scholarship details or evaluates the process of photovoice exhibits and how they might lead to change relative to other research about photovoice (Evans-Agnew & Rosemberg, 2016; Liebenberg, 2018; Lofton & Grant, 2021; Pichon et al., 2023). The absence of data in this area limits the potential of visual research overall (MacEntee & Mandrona, 2015). Our findings outline one possible approach to photovoice dissemination.
First off, our findings show that there are many ways to disseminate photovoice projects or translate findings into action. Exhibits are common and can be powerful tools but may not be the best fit in every situation or for all participants. In our case the participants believed that they could better reach intended audiences – the goal of photovoice – with education via a composite documentary in the classroom. Other visual researchers using cellphilms (Kendrick et al., 2021), video testimonies (Morgiève et al., 2019), and films (Whitley et al., 2020) have effectively used similar processes to showcase participants experiences and decrease health stigma. Our findings reinforce that these video tools can also be integrated into photovoice to enhance traditional exhibits.
Our participants also changed their minds about how to disseminate their work during the project. A key part of our dissemination process was prioritizing participants’ opinions. This was in line with the theoretical bases of our project in general (resilience, empowerment) and reinforces the importance of ongoing communication with participants about their ideas throughout all stages of a project and not just the beginning. Relatedly, it also aligns with the principles of CBPR, which encourage collaboration, flexibility, and prioritizing participants’ input (Israel et al., 1998) and photovoice, based in participant consciousness raising through participant leadership and related ownership of dialogue and the direction of problem solving (Freire, 1970). This decision did affect the project’s outcomes. The unintended findings, however, pushed us in new directions to address gaps in training for emerging health students. Photovoice dissemination, based on our experiences, needs to be responsive and flexible to participants’ and potential audience members’ needs.
Relatedly, participants noted that photos alone were not sufficient to tell their stories. In this case they were too piece-meal and did not tell a complete story. Video, which captured participants actual voices, and gave participants a way to fill in their stories with additional details and context, was necessary for participants – as well as viewers. In our case photovoice was an effective teaching tool to reduce stigma. Introducing students to the lives of others did improve attitudes, reduce fear, and limit stigma. But we also needed to educate the audience about HIV in general and about the social determinants of health. These findings echo those of other scholars who remind us that pictures, or any data for that matter, simply do not speak for themselves (Mitchell, 2011, 2015; Rose, 2016). We used photovoice, interviews, videos, education, and discussion to frame and structure participant stories.
Students reported less fear of people living with HIV, more nuanced understandings of men’s lives, and that they liked learning about men’s lived experiences through the project. We did find that after seeing the video, health professional students increased their beliefs about minority ethnicities spreading HIV. This was clearly not an intended finding. We cannot be not sure how and why students reported this. Our post film qualitative data collection was limited, yet one student did remark that “I found the intersection of gay and black men with HIV to be important because society/media often only focuses on white men.” This comment indicates that it is
Research indicates that homophobia, racism, and AIDS stigma are more common in certain geographical areas like the South and Midwest – where these students were studying and for the most part, grew up (Frey et al., 2021; Pew Research Center, 2014). It is possible that students, knowingly and unknowingly, ascribe to these beliefs and hold misconceptions about PLWH even if they are actively working to learn and grow in these areas. In addition, these students had little prior experience thinking about who PLWH were – and few opportunities to interact with people living with HIV. Thus, they entered class lacking experiences that might have help them to humanize HIV and people living with the virus. It is highly recommended in future iterations of projects like this to include discussions of social aspects of HIV risk like poverty, racism, and social networks (McGoy et al., 2018), and to openly dispel myths that any one group of people spreads HIV, even though HIV may disparately affect specific groups of people. These finding also reiterate that images and photovoice overall are not automatically positive and empowering tools, and the importance of a dissemination process that includes evaluating audience responses to photovoice to unveil unintended consequences of seeing images (Fricas, 2022).
Conclusion
Despite these limitations, our findings do affirm that photovoice is a flexible CBPR tool that can engage participants and communities. It is, however, a beginning and not an end point to conversation and change (PhotoVoice, 2023; Teti, 2019). By way of outlining our process of disseminating the output of photovoice, we propose one possible way to think about a disseminating photovoice images and evaluating their impact. Our approach is based in resilience and empowerment approaches, is flexible and prioritizes participants and their views throughout the entire project, includes photovoice as only one part of ongoing and sustained change for image viewers, and points to the importance of exploring and responding to viewer response to dissemination. Knowledge about the audience of photovoice can improve the reach of the method, generate ideas about multiple ways to move photovoice results to change, and help align photovoice projects with other elements of change in community, society, and policy arenas (DiEnno et al., 2021).
Footnotes
Acknowledgments
ORCID iDs
