Abstract
In this article, we present new insights to the application of photovoice as a tool for empowerment of the marginalized and an antecedent for social change. Special attention is directed to the use of photovoice in raising critical consciousness of the stigmatized and marginalized youth living with HIV/AIDS as a catalyst for empowerment through both the process and content of the research. The article also expounds on the practical execution of photovoice that is not adequately elaborated in projects within resource limited settings.
Introduction
Extant literature reveals that youth living with HIV/AIDS (YLWHA) in sub-Saharan Africa are disadvantaged and relegated to the fringes of society. These youth are often regarded as inconsequential beings and thus denied basic needs and rights (Kimera et al., 2020, 2021; Singh & Lata, 2018). However, focusing solely on the injustices and challenges that YLWHA experience makes invisible other dimensions of their lives that may be deemed empowering for them and for others. Therefore, in a study, the basis for this methods article, we directed attention to the strengths and resources that empower YLWHA. We applied photovoice, a visual-art-based Participatory Action Research (PAR) method and a theoretical lens of critical consciousness to broach empowerment and social change for YLWHA. Unlike many photovoice projects with marginalized groups, we aimed at achieving empowerment for YLWHA through both the process and content of the research. Empowerment can be viewed as a process and outcome that occurs in individuals, organizations, and communities, involving active participation, critical reflection, awareness, and conscious raising about the influence of political and economic structures and interests (Perkins, 2010; Zimmerman, 2000). Empowerment also involves access to and control over important decisions and resources that impact wellbeing (Perkins, 2010) and it is thus an essential element of health promotion. Empowerment research surpasses cataloging negative experiences, unmet needs, everyday life struggles, and challenges of the marginalized to identifying intrapersonal and relational resources and capabilities. Photovoice has gained enormous popularity in empowerment research especially in projects involving disadvantaged or marginalized groups, whose members are stigmatized (Fournier et al., 2014; Kimera et al., 2020; Link & Phelan, 2001) since its advent by Wang and Burris (1994). However, the method has not been widely applied with stigmatized populations in sub-Saharan Africa to negotiate empowerment through both the process (how the research is conducted) and content (type of research questions asked). In this methods article, we draw on our experience, working on a photovoice project with YLWHA in western Uganda to: (1) motivate for the application of democratic research methods while working with marginalized groups, situating photovoice in a broader arena of PAR methods; (2) illustrate why photovoice is an appropriate method for raising critical consciousness and how our photovoice project initiated empowerment and social change processes for YLWHA; (3) expound on the practical execution of a photovoice project within a resource limited setting; and (4) highlight how we achieved the overarching goals of photovoice. The article ends with a conclusion, highlighting the lessons learnt from our photovoice project.
Impetus for Photovoice with Marginalized Groups
For research to be relevant, empowering, and to stimulate social change for marginalized groups, it has to bear undertones of worldviews, values, expertise, and experiences of the marginalized (Chesser et al., 2020; Harding, 1992; O’Keefe & Hogg, 1999; Pratt, 2019). Such research should be based on relevant discussions of how social forces breed inequalities and how these inequalities lead to and maintain marginalization (Liebenberg, 2018). Conventional community-based research approaches often centralize the research process around researchers and place the researched population at the periphery, in the position of research objects and subjects rather than active research participants (Davidson-Hunt & Michael O’Flaherty, 2007). For the populations at the margins of society, the centralization of research alienates them from the entire process of knowledge creation, further maintaining and acerbating their marginalization due to misinterpretation and misrepresentation. On the contrary, when the marginalized become co-researchers, the research process is transmuted to yield more beneficial and sustainable outcomes for them (Chesser et al., 2020; Nykiforuk et al., 2011). Moreover, the research priorities, solutions, and recommendations get better aligned with the experiences, needs, and interests of the marginalized. Thus, to challenge the centric tendences that undermine the knowledge and experience of the marginalized groups, democratic research methods are eminent (Chesser et al., 2020; Israel et al., 1998).
Democratizing research (De Lange, 2012; Novak, 2010) is not only about involving methods that increase participation of the researched populations but also transforming both the researchers and the researched. The researchers adopt lenses of the marginalized and highlight findings that can be translated into actions that promote social justice and inclusion (Pratt, 2019). For the researched on the other hand, empowerment is further fostered through research content that raises critical consciousness (based on questions asked and how they are asked). One PAR method that has gained prominence especially while researching marginalized groups is photovoice (Bryanton et al., 2019; Holtby et al., 2015; Hussey, 2006; Kimera et al., 2020; Strack et al., 2004; Wang et al., 2000; Wang & Burris, 1997).
Photovoice entails participants using cameras to help them document, reflect upon, and communicate issues of concern to them, while stimulating social change (Wang, 1999). The methodology, based on visual-art (Wang et al., 2017), was advocated for by Wang and Burris as an analytical, proactive, and empowering method (Wang & Burris, 1994). Photovoice arouses the ingenuity of the marginalized populations enabling them to create indigenous knowledge (Wang & Burris, 1997). Moreover, it is essentially an empowering research method as participants learn from participating and they develop a sense of ownership over the knowledge created (Jarldorn, 2019). The data created through photovoice has a higher likelihood to engage more people outside the scholarly spheres (Nykiforuk et al., 2011) such as policy makers, practitioners in the field, and the general public and hence to catalyze social change. As noted by Liebenberg (2018), photovoice facilitates participants’ reflections on structural experiences to generate knowledge that can be voiced and amplified to be heard by the whole of society. Consequentially, photovoice connects science and society for the process of social change (Wang, 1999) since it raises critical consciousness in participants and also in the wider society.
While myriad studies have employed photovoice while working with marginalized groups to portray social injustices and inequalities and to conduct needs assessment as a way of advocating for social change, the use of this methodology to represent the marginalized as capable of drawing from their individual and collective strength as well as the resources in their living situations to achieve the same goal has attracted minimal attention. Besides, advocacy in photovoice projects is commonly based on visuals and narratives that convey disenfranchisement, deficits, and powerlessness of the marginalized yet insights on individual and relational strengths and resources can challenge stereotypes, negative worldviews, and misconceptions within and about the marginalized leading to social change. Inherently, photovoice is an empowerment tool through its appeal to democratic principles and co-creation of knowledge with participant but additional focus on empowering representations of the marginalized is seen by the authors as a way of augmenting empowerment. This is what is referred to in this article as empowerment through both process and content of the research. Furthermore, the practical execution of photovoice with marginalized groups has not been substantially nuanced in projects conducted in resource limited settings. These two concerns are the crucial subjects for this article.
Critical Consciousness Underpinning Our Photovoice Project
Photovoice is based on three theoretical orientations: feminist theory, documentary photography, and critical consciousness (Wang, 1999; Wang, 2005 as cited in Castleden and Garvin (2008). However, we were particularly interested in the role of the methodology to raise critical consciousness and to advocate for social change. Hershberg and Johnson (2019) define critical consciousness as the ability to recognize and analyze structural inequalities that breed marginalization and the commitment to challenge them. Our project was informed by the work of the Brazilian educator and philosopher, Paulo Freire. Freire’s work on critical pedagogy and critical consciousness (Freire, 1970) is instrumental in knowledge creation and challenging socio-economic and political inequalities that perpetuate social injustices. Raising critical consciousness was in this project foreseen to lead to social change. This change starts with individual participants themselves and it then progresses to the community and society through knowledge sharing and engagement with power brokers. It was one of the goals for our photovoice project to facilitate participants to reach critical consciousness. Freire proposed that critical consciousness can be achieved through small group interventions in which meaningful dialog can occur to promote shared values and commitment. The use of Socratic questioning, imagery, and dialog is also key in facilitating individuals toward achieving critical consciousness (Baker & Brookins, 2014; Carlson et al., 2006). Cabrera et al. (2014) argued that marginalized youth with higher levels of critical consciousness are more likely to have optimal mental health, greater social inclusion, participation, and achievement. Critical consciousness can also avert feelings of isolation and self-blame, typical of marginalized and stigmatized individuals, as well as confront corrupt stereotypes and worldviews.
Execution of Our Photovoice Project and Lessons Learnt
Participant Selection
We selected 11 youth, aged 14–21 years from a Peer Support Group (PSG) of YLWHA who regularly meet at one hospital in Kabarole district, western Uganda. Selecting youth from a PSG guaranteed group cohesion and eventual collective reflection and discussions since participants were already well acquainted with each other. In line with Freire’s approach, this small number of participants was an enabler for meaningful engagements in dialog which facilitated all participants through the steps toward critical consciousness. Participant selection was purposive to ensure inclusion of both males and females of varied ages and also based on willingness to participate in several sessions of group meetings, as well as being able to speak either English or common local languages (Lutooro and Luganda). Although most participants could speak English, we realized that they could ably express themselves in their local languages. We therefore encouraged the use of local languages as much as possible. In selecting participants, priority was given to those who were previously involved in a similar study with the same research team (Kimera et al., 2020). In this earlier study, we explored these youths’ lived experiences with HIV-related stigma, a critical facet in their marginalization, and the effects of stigma on their lives. The interrogation of socio-economic, political, and cultural drivers of HIV-related stigma raised these youths’ critical consciousness of the injustices in their communities. In order to create a dual-front, against these injustices, this follow-up project purposed to disperse empowering representations of YLWHA and how these can foster social change.
The follow-up photovoice project was part of a larger research project, for which ethical approval was obtained from the Institutional Review Boards (IRB) of The AIDS Support Organization (TASO) in Uganda (TASOREC/009/18-UG-REC-009) and Vrije Universiteit Brussel in Belgium (B.U.N 143,201,835,870). Permission was also sought from the Uganda National Council of Science and Technology, the hospital director, and the in-charge of the youth ART clinic. Using prior phone contacts with the PSG, potential participants were reached by phone calls. Those unavailable or unwilling to participate were replaced through snowball sampling. In a private quiet venue at the ART clinic, information about the research project was given to each potential participant after which their assent or consent to participate was obtained. For minors, informed consent of the legal representatives was additionally obtained. We also sought consent for audio recording and photo release to allow the dialogs to be cited and the photos participants took to be published or exhibited.
Project Sessions
Seven consecutive sessions were organized over a period of 3 months. In addition, the first author continued to interact with participants to address their concerns about the project that they occasionally raised through phone calls. We realized that this was a good approach since it limited the number of group sessions and the project duration. To decide the venue for the meetings, consensus was on the regular meeting space of the PSG at the ART clinic. We learnt that YLWHA felt safe, secure, and private at the ART clinic. Therefore, to avoid interrupting their regular PSG meetings and other personal engagements, we choose the same day but at a time after the PSG meetings.
The first session was an introductory session to the photovoice concept and procedures. Since majority (7/11) of the participants had been involved in a similar project before, the session was highly interactive with “experienced participants” contributing more to the discussion to enable the new recruits understand the concept. It was also the first meeting that these youth had following the first national COVID-19 lockdown in Uganda in March, 2020 and as such there was a lot of experience sharing related to the lockdown. This interaction built group cohesion and set pace for subsequent group sessions. In this session, together with the participants, we agreed on the goal of the new project. We took time to discuss with each individual participant to gauge their comprehension of the project goal and to answer questions that they did not raise in the group. We discussed the ethics of photography, appropriate and inappropriate photographs, as well as personal and camera safety. We also held a practice session during which our new participants were guided by their colleagues and the facilitators on the functionalities of the digital cameras and how to take a good photo, centering the image, balancing illumination, and so on. From this practice session, we noted the curiosity of the youth as they tried to open the cameras to remove batteries and memory cards. We thus cautioned them against the practice since it would lead to damage of cameras, loss of memory cards, and ultimately jeopardize the project.
In the second session, we re-echoed the structural and contextual challenges related to living with HIV and how social forces propel them in order to set stage for a counter narrative. The intent was to develop a group understanding of how HIV-related challenges lead to disempowering self-images and representations of YLWHA in the community. We noted that participants were very elaborate and did not mince words while describing the challenges and injustices they experience while living with HIV as well as the social misconception and misrepresentation thereto. Participants were then engaged in exploration of their empowering representations and how these could empower them and elicit social change. To initiate a process of introspection, simple prompts were used: (1) what strengthens you in dealing with HIV-/AIDS-related challenges in your life? (2) What resources (people, places, and things) assist you in overcoming HIV-related challenges? (3) What can we show to the community as empowering representations of YLWHA? It was realized that these youth had been accustomed to perceiving themselves in a disempowering way and it was initially difficult for them to appreciate the individual, environmental, and community resources/strength that empower them. However, through continuous introspection and dialog guided by Socratic questioning by facilitators, participants started to realize and reveal ways in which they overcome challenges related to living with HIV, given their individual abilities as well as the support and resources in their community. This was highly empowering for the participants individually and collectively since the advanced knowledge seemed to be an antidote for the structural disempowerment they had bought into.
In the third session, participants reflected further on their empowering representations, visualized and presented them as armature hand drawn pictures in notebooks we provided to them. Similar to the drawings that Freire used, these pictures were intended to be precursors for photographs that the participants would eventually take. We found this approach compelling to link the participants’ mental processes with the actual photographs they would latter decide to take. We thus recommend this to others who would use photovoice with marginalized youth. Although it was evident that participants had varying abilities in drawing, each one of them could articulate the reality their drawings intended to represent. At the end of this session, each Participant was provided with a digital camera with an assignment to take photographs in their living situations that represent what supports them in overcoming HIV-related challenges. For each empowering photo that participants would take, they were also required to write a brief narration in their notebooks. This was incorporated into the project procedure after realizing that participants would take many photos and forget what each photo represents. For those that had trouble writing, their stories were verbalized and recorded audially.
In the fourth and fifth sessions, batches of photographs were received from participants. The photos were extracted from the cameras into a computer by facilitators and stored in different folders clearly marked with each participant’s pseudonym. Participants were each asked privately if there were photos they did not want to show or discuss in the group. All participants had taken some photos of themselves, their family members, and friends that they did not want others in the group to view. However, they were comfortable with showing and discussing the rest of the project photos in the group. In turns, participants displayed their photos using a laptop and projector provided by facilitators. Using a projector to display photos was highly feasible and cost-effective in our case due to the availability of the necessary resources (power and room) at the ART clinic. The major goal at this stage was to identify suitable photos for the project. The guiding questions for this presentation were (1) Is this an empowering image and why? (2) How does it show the way you overcome challenges related to HIV or the support/resources that help you to do so? The non-presenting participants were always invited to give their reflections on the displayed photos. It was thus interesting to realize the different individual reflections based on the same photo. Consensus was always reached concerning the exclusion or inclusion of photos based on their merits as presenting empowering images. At the end of these two sessions, we had a number of photos that were agreed upon as appropriate to include in subsequent project activities. Each participant, together with the facilitators, also privately selected photos they wanted to be printed for their personal photo albums. These were later handed to them in an album at the end of the project as a token of appreciation for their participation. The photo albums stirred excitement among participants, realizing that they had something to take home from the project.
In the sixth and seventh sessions, participants shared and discussed in a group their photos that had been selected for inclusion, around the questions “Why is this an empowering image? What does it reveal about how I deal with the challenges in my life because of HIV/AIDS? What does it reveal about how my community can support me and how the community can promote my social inclusion?” Other participants were invited to respond to this showing, guided by the facilitators using a variation of the SHOWeD technique, a well-established technique to guide photovoice discussions (Wang & Redwood-Jones, 2001): What do you see here? What is happening? How does this relate to our lives? (How does this photo show how you cope with or overcome HIV-related challenges)? Why does this strength exist? What can we do to harness it? After each photo was presented, reflected upon, and discussed in a group, participants were asked to categorize it based on what it represents, and the commonalities in the photos and or stories relative to the others. At this stage, we started to identify themes inductively. The sharing of photos and the discussion that ensued allowed for moving from critical self-reflection of lived experiences to an understanding of how collective empowerment is shaped. Consistent with Freire’s “read the word to read the world,” participants were facilitated to view the world through the images they created. The participants were thus motivated to show the flipside of their life to the community that was empowering for them and others like them so as to challenge and change community perspectives.
After these sessions, participants were actively involved in determining actions to take as a way of disperse the empowering representations of YLWHA in the community to valorize the project. A number of strategies were suggested but after a thorough group discussion on the merits, demerits, and practicalities of each, the following were agreed upon: (1) to develop photobooks, with the project photos and narratives, that would be distributed to schools and ART clinics of different healthcare centers in the area, (2) to create a Facebook page on which photos and narrations would be posited to stimulate a critical dialog with other YLWHA or other people who would access the page, (3) to display the photos and corresponding narratives in public places such as markets, schools, and busy trading centers to stimulate reflections and dialog among community members, and (4) to make photo-text exhibitions in annual regional youth conferences in which YLWHA, practitioners in HIV/AIDS care, and policy makers are invited to attend.
The Analytical Approach We Took
Main Themes, Themes, and Direct Quotes.
How the Main Goals of Photovoice Were Achieved
Photovoice attempts to overcome power imbalances between researchers and the researched communities (Castleden & Garvin, 2008; Harley, 2012). The methodology leads to power sharing between researchers and participants, fostering trust and a sense of ownership (Newman, 2010). However, the actions that lead to this realization are rarely explained. In our project, we were highly reflexive to ensure that our professional and social positions did not override the voices of our underprivileged participants. We were open to consider how our assumptions, personal biases, professional backgrounds, ages, and social positions as researchers would limit what we ask, see, hear, and recommend during our engagements with participants. Although we maintained our position as facilitators with vested interests in the outcome of the research and as custodians of the photovoice guidelines, we acted democratically, respecting the views and suggestions of our participants. We strove to explain every step with clarity, using the “language” of our youthful participants to lay ground for meaningful discussions in which everyone was on the “same page.” We ensured that consensus was always reached wherever decisions had to be made. For instance, when to meet, where to meet, photos to include in the project, how to disseminate our findings in the community, and who to take particular actions. This however does not mean that we did not have a protocol for this project but rather that we followed it with high flexibility while integrating experiences, ideas, and interests of our participants.
Infused with power relations is the extent of participation. Kemmis (2008) refers to participation as the involvement of people in a democratic process of knowledge production. Although participation can greatly vary, highly participatory methods require communities to have a clear understanding and a voice throughout the research process, right from the choice of the study focus to dissemination of findings and to the strategies for advocacy. Our project was collaborative, actively involving participants in most aspects of the research right from the time they were recruited. However, we find this as a common situation in participatory research but a potential flaw since the focus of the research and questions to be asked are predetermined before participant recruitment. This is always essential to seek funding and ethical approval of prospective studies. Related to participation is the empowerment and advocacy that is meant to accrue from the use of photovoice. Empowerment is a key concept in health promotion of the marginalized (Messias et al., 2005) and a strong appeal of the photovoice methodology. Empowerment occurs when participants are centrally placed as active members in the research process and they are supported to realize their role in working towards the change they aspire for (process empowerment). In addition to this kind of empowerment, we guided participants to recognize the individual, environmental, and community resources/strengths that enable them overcome challenges of living with HIV/AIDS, something that is not commonly done with research involving YLWHA (content empowerment). Participants therefore gained critical awareness of their individual and collective strength and resources using locally generated photos and stories. To avoid the claim of empowerment on behalf of participants, a few quotes from participants on their individual reflections at the end of the project are presented below. … but what we have talked now, I see that we have the ability to live like others using our own energy, things and people around us and not just to cause others feel sorry about us. (21-year-old male). We youth with HIV need to change our thinking and then other people will also change the way they look at us (17-year-old female). I think it is important to start being happy about ourselves that we can live like other people and even do better (14-year-old male). Someone can even ask you that ‘what do you like about yourself?’ and you say nothing yet there many things we can be happy about. Now for me I have a child but many women are barren, even those without HIV (18-year-old female). We have heard what youth here are able to do that those without HIV cannot do. We need to thank God for these things and stop thinking that we have no use in this world (17-year-old male).
This enhanced consciousness has potential to persist in the group of participants and in the community beyond the photovoice project (Jarldorn, 2019). Photovoice projects also ought to engage with key individuals and institutions that wield social and political power to influence decisions and policies. Alongside the individual and community empowerment, appropriate ideologies and inclusive policies are likely to lead to social change. However, key challenges such as reaching and engaging power brokers as well as the willingness of these power brokers to act remains a challenge. To avoid arm-chair advocacy, together with participants, we planned dissemination avenues that would reach targeted community members and policy makers and those that participants would voluntarily execute with no or little support from the research team. These are elaborated in the previous sections of the article.
Conclusions
In this article, we have shown that photovoice offers a shrewd opportunity to empower the marginalized and to nurture social change not only as a research approach but also through conscientization of participants about their individual capabilities and community resources. However, this can be realized through deliberate efforts to raise critical consciousness of researched communities and to engage in advocacy that is well tailored to the realities of the community under study. Although the photovoice methodology has set guidelines advanced by its proponents, these need to be adapted with high flexibility to suit the target community. Just like in other PAR methods, photovoice researchers should employ democratic research principles and collaborate with researched communities to co-create knowledge that can catalyze social change. It is imperative to realize that empowerment and the subsequent social change are not instantaneous following a photovoice project but rather gradual. However, extensive dissemination of advanced knowledge and engagement with power brokers is likely to fuel the processes.
Footnotes
Acknowledgments
The authors are grateful to all the youth who participated and shared their experiences in a study on which this methods article is based.
Declaration of conflicting interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by the University of Applied Sciences and Arts Gent (PAR4CO-DEV).
Data Availability
No dataset was generated or analyzed for this article. However, in the article authors refer to materials and methods of a study that is in the process of getting published. These materials are available from the corresponding author on reasonable request.
