Picturing Participation: Catalyzing Conversations About Community Engagement in HIV Community–Based Organizations

Overall Study Design

Following a community-based participatory research approach (Minkler & Oetzel, 2017), community members and academics partnered in all stages of the research. Our study aimed to explore how 36 stakeholders understood “engagement” at three HIV community–based organizations providing programming and service delivery (Figure 1). We were also interested in the organizational, ethical, and sociopolitical issues that informed these understandings. Each site represented a distinct organizational context. The lead author (who was nesting her doctoral dissertation within this study) had preexisting professional relationships with each site. To be eligible, stakeholders needed to be a current or former program participant, client, peer volunteer/worker, or staff member at a participating organization. Terminology (e.g., client, volunteer) reflects usage at each organization. The study underwent institutional review board approval (Certificate #: e2016 – 288).

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Figure 1.

Project overview and design.

Photovoice Workshops

We used photovoice (Wang, 1999) to explore people’s ideas around engagement. Photovoice encourages coinquiry and dialogue among participants, draws on community strengths and expertise, and encourages participants to reflect on experiences from new perspectives (Mannay, 2010; Nykiforuk et al., 2011; Wilson & Flicker, 2015). It is well-suited for projects with social, program and policy change objectives (Mitchell et al., 2017). Photovoice and other visual methods have been used widely in the HIV field (Teti et al., 2018), including by team members at organizational sites and elsewhere (Flicker et al., 2014; Switzer et al., 2015). Participants were asked to take photos in response to the prompt: “What does engagement mean to you? What does it look like in practice at your organization?” As a team, we defined engagement broadly to encompass involvement, design, and leadership in programs or decision making. Participants brainstormed collective understandings in the first photovoice workshop. We referenced these understandings in subsequent workshops and in prompt development, as commonly employed by photovoice researchers.

At each site, we provided training on ethics and photography, supplied photography equipment and instructions, and discussed, analyzed, and celebrated photographs. We discussed photographs in focus groups, and conducted photo-elicited interviews (Harper, 2002) where appropriate. Workshops were codesigned with organizational representatives and cofacilitated by authors (Switzer and Apong ¹ ), with support from research assistants. Participants received a handout that reiterated oral instructions, guiding principles (e.g., no pictures of people without verbal consent), and optional subprompts generated with the help of organizational representatives. Providing tailored, collaboratively designed prompts is a common element of the photovoice methodology (Latz, 2017). Each participant chose one or two photos for public exhibition and wrote associated narratives. Participants identified their preferred attribution; many were pseudonyms. Quotes identified throughout are taken from photo discussions, interviews, and narratives. Following the workshops, we met with a subgroup of participants and organizational representatives to develop and curate a photography exhibit featuring photographs, narratives, site-specific installations, and a coauthored community report (Switzer et al., 2017). Our methodology has been discussed elsewhere (Switzer, 2019b).

Collaborative Analysis

Our collaborative analysis process began with participants, who looked across exhibited photographs and narratives (n = 63) from their respective sites and identified common themes. Conversations among participants were audio-recorded; fieldnotes were saved. Then, a subset of the research team—including organizational representatives—reviewed this material (from all three sites) and developed a master-coding framework over two meetings. The coding framework contained seven of the key themes discussed throughout. The lead author tested and refined the coding-framework in NVIVO, before finalizing it with the full team. Photographs and participant-written narratives were subsequently analyzed in-person by our full research team using the DEPICT method (Flicker & Nixon, 2015). The DEPICT method is a collaborative, analytic approach designed to include multiple perspectives from community and academic stakeholders in the research process. In small working groups, we aggregated the 63 images and narratives into the seven themes. Each group reviewed their cluster and drafted descriptive summaries on worksheets. Themes were further refined during community report writing, and community co-led presentations. A subgroup of the team coauthored this article.

Reflecting on Individual and Organizational Journeys

Participants used the allegory of journey to describe their engagement in HIV community–based organizations, as clients, program participants, peer workers, or volunteers. Many participants depicted personal journeys, growth, and transitions in their photographs and narratives. In some cases, participants evoked literal migrations across continents or cities. In others, they referenced metaphorical roads of healing, acceptance, or personal growth. For example, in The Path (Figure 2) Alberto visually depicts a forest trail. In his narrative, he explores his life journey and what it meant to take up a volunteer position that drew on his expertise and experience: “I chose . . . to take a different path when I was diagnosed with HIV. . . . I am not going to let HIV [stop] me from fulfilling my dreams.”

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Figure 2.

Images and narrative excerpts: journey, relationships, and accessibility and support.

Participants also reflected on organizational journeys. For some, their personal journey was related to their desire for organizational change. Peer volunteers told us that reflecting on their diverse journeys with diagnosis and acceptance enabled them to support others within their organization to navigate similar challenges. This opened opportunities for organizations to serve a wider range of communities living with HIV, such as newcomers to Canada. Others reflected on their health journey, and how it intersected with their organizations’ historical journey to serve people “living, not dying” from HIV. Some participants, particularly young people, ruminated on their growth and struggle, and their place within youth-led organizing (for more on journey, see Switzer et al., 2020).

Honoring Relationships

Participants described different types of relationships with themselves, others, HIV organizations, and the land. Many drew on visual metaphors of the environment to explore relationships in the context of organizational or communal ecosystems. In Bee (Figure 2), Andrew describes the “resilience” of organizations as being “entwined” with the health (understood broadly) of its peer volunteers. Another participant in a management role visually depicted a mural of bees; she described community engagement as “interdependency . . . for survival.” For some, connection to the environment was material; in these instances, participants reflected on relationships to land—and more specifically, the impacts of settler-colonialism—when thinking about community engagement.

Relationships were multidirectional. Participants felt that personal relationships cultivated a sense of community, belonging and sustained participation in community-engaged initiatives. Shona, a clinician, captured a tracing of a client’s foot on the floor after a treatment to highlight the “impressions left behind,” and clients’ impacts on health care providers. Many clients stressed the importance of informal support networks: “We just click. Some of us have been here for so long.” Interpersonal connections laid foundations for participants to work together collaboratively on larger projects or deliver peer-led services. As Kamilah argued, “We can mobilize in ways that we might not be able to on our own.”

Accessibility and Support Mechanisms

Participants identified barriers to participation, and the need for adequate supports for people to meaningfully, feasibly, and sustainably engage in organizational program or policy change initiatives. Accessibility and support mechanisms included collective community care, organizational supports, community-responsive programming, and access to supplies (i.e., art making or drug use). Many discussed the need for “safer” spaces. Stigma is well-recognized as an individual and structural form of discrimination that influences participation (Chambers et al., 2015; Link & Phelan, 2001; Switzer et al., 2019). Dakarayi’s photo Safe Space depicts an image of a waiting area; her narrative alludes to relational and physical safety (Figure 2). Physical (and social) spaces are important factors to consider when designing community-engaged initiatives. As Sunshine shared, “Some people can’t go home and talk about how they’re feeling because people don’t know about their [HIV] status. . . . Being around people who are going through similar things [as] you are—that’s important.”

Participants identified the need to view accessibility through an intersectional lens. Lydia photographed a bike with a missing wheel and commented: “Sometimes we look at . . . one experience that could be happening, and not considering the many factors that influence our lives.” She cautioned practitioners against adopting “a single-blanket solution.” Although she does not reference intersectionality directly, Lydia’s image and narrative visually and orally evokes Crenshaw’s (1989, 1991) foundational work on intersectionality, suggesting that practitioners work against single-axis frameworks to consider how multiple identity formations and experiences (e.g., race, disability, age, class, immigration status, sexual orientation, gender identity) intersect to shape people’s involvement in programs, access needs, or policy experiences.

Advocacy, Peer Leadership, and Social Justice

Many viewed their lived experience as expertise. Some also considered their engagement in organizations (or this project) as a form of activism. As Chantal expressed, “I took this photo as advocacy . . . to make a difference.” DKO shared an image, OMG Stonewall, of the Statue of Liberty holding a torch—a monument which has historically signified “freedom,” democracy, human rights and the abolition of slavery (Figure 3). ² In his narrative, he references the principles “for us, by us” as foundational to HIV community–based organizations. His title alludes to the historic protest by the 2SLGTBQ community (led primarily by those who were disabled and racialized)—a precursor to banner-drops and die-ins organized by people living with HIV and their allies (Jenkins, 2019; Kinsman, 2018; Piepzna-Samarasinha, 2019). Appeals for community engagement have been entwined with HIV activist movements. As echoed in Bee (discussed above), Andrew described how the dedication and activism of many individuals living with HIV “was the catalyst” for many organizations, and “vital for their continued work.”

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Figure 3.

Images and narrative excerpts: advocacy, peer leadership, and social justice, diversity and difference, navigating grief and loss, and nonparticipation.

For many, their engagement was connected to the history of GIPA/MEPA (the greater, or meaningful, involvement/engagement of people living with HIV; Joint United Nations Programme on HIV/AIDS, 1999). As Yvette signaled, “We’ve had different volunteers come here . . . we’re just the latest cohort . . . picking up the baton.” Batons are often relayed, suggesting that “community engagement” can be used for powerful communal ends. Some participants (particularly women of color) addressed the leadership role they played within organizations, and the importance of creating “opportunities for those impacted most.”

Working Together: Diversity and Difference

Some participants identified how difference might be leveraged within an organization without collapsing or erasing it. Others described opportunities and challenges of navigating issues of difference when designing programs, or collaborative projects. For example, within HIV community–based organizations, individuals may be invited to participate in an initiative, or hired because of a shared experience. However, the HIV community is not homogenous. Age, race, Indigeneity, gender identity, sexual orientation, class, drug use, citizenship, HIV status, language, and disability uniquely intersect to contour people’s experiences. In Diaspora out of Focus (Figure 3), Tumaini intentionally blurs an image of flowers. Tumaini explains that for some, attending to different facets of one’s identity in HIV programs requires a constant “refocusing.” Tumaini intentionally disrupts the idea of a singular, or homogeneous community that one might consult:

Is it ambitious to imagine youth [HIV prevention] programming that is all-encompassing of everything that we are? . . . By virtue of being all the different ways we come into programming, I think we’re already fragmented in many ways.

When reflecting on the diversity of program clients (from younger people who use drugs to older gay men who are long-term survivors), Karen, a clinician, explains: clients “struggle to figure out how to share this space. But there’s actually an opportunity to . . . leverage one another’s kind of wisdom that they bring to the table.” Both examples highlight the heterogeneity of communities who participate in community engagement initiatives and highlight the importance of acknowledging and navigating (rather than erasing) difference—in other words, taking an intersectional approach (Crenshaw, 1991). There are profound opportunities here. As one participant, Nye shared, sometimes community engagement can be a “source of division,” but it can also be used to “take a different view of maybe what angle you should be looking at things.”

Navigating Grief and Loss

Loss and grief were a constitutive backdrop of many participants’ lives. Participants shared experiences of personal mortality, losing loved ones and the collective loss associated with the AIDS and overdose epidemics. As one participant shared, community engagement is important “because we’re still alive.” In Untitled (Figure 3), Marc visualizes two empty chairs on a beach to symbolize the “collective losses” his community experienced. Absence—who is not in the frame—permeates this image. For long-term survivors of HIV, the early epidemic (pre-antiretroviral therapy) was marked by ongoing grief and regular loss. Today, mortalities from the overdose epidemic have reached similar proportions (Kolla et al., 2019). About a third of participants used drugs and/or were part of drug using communities. It was not uncommon for participants to announce that they had lost someone in their lives during workshop check-ins. Notably, two participants passed away before the project culminated.

Loss was constant and deeply tied to structural inequity. Youth participants shared feelings of grief and sadness related to ongoing systemic oppression. As Michael expressed,

I rushed all the burials. . . . I was in my own denial, not grieving. . . . It’s the lifestyle of growing up in the hood. . . . What do I do? . . . [This] could have been prevented by more cash, accessibility to drive to these communities to talk more suicide prevention, all of that.

Loss, however, was not always considered negative. Participants described the possibilities of hope and new beginnings in the face of loss. Loss was also viewed as a “step” in healing.

Nonparticipation

Participants also discussed choosing to not participate. Reasons included burn out, grief, or negative experiences. For some, just getting up and out the door, when dealing with physical and mental health challenges, was a struggle. Nonparticipation may appear incompatible with literature on engagement that focuses on the “active” or “full” participation of community members (e.g., see Khodyakov et al., 2012; Sanders & Munford, 2017). However, as Lydia expresses with Growth (Figure 3), not participating can be generative. Her image signals the productive possibilities of ensuring people can participate on their own terms. As Buttercup shared:

Sometimes people need to be left alone to really determine things for themselves and develop an understanding of what their needs are before being around other folks . . . so like that’s a way of supporting a person, by giving them some space.

Many community members actively involved in peer leadership roles carry multiple burdens, such as working with limited resources while also dealing with personal exhaustion, and the weight of structural barriers. As Chris explained when reviewing photos: “There’s a lot of commonalities . . . talking about burn out and experiencing barriers [or] difficulties in becoming engaged or remaining engaged.”

Sometimes nonparticipation was depicted spatially. Several participants photographed places where they could pause and reflect. For example, one participant at the hospital referenced a bench “away from the building, away from the nurses” where “I just wanna get away.” Participants also told us that the choice to not participate needed to be considered in relationship to loss. People needed time to heal. As Andrew expressed, “darkness is where you can regenerate first. . . . It’s okay to isolate a little bit.” These narratives highlight the importance of viewing nonparticipation structurally, and through the lens of self-determination and agency (for more on nonparticipation, see Switzer, 2020).