Wood, Rulon "Community-Designed Anti-Stigma HIV Campaigns: A Case Study in the Co-Construction of Digital Interventions." PUBLIC: Arts, Design, Humanities 4, no. 2 (2017). http://public.imaginingamerica.org/blog/article/community-designed-anti-Stigma-hiv-campaigns-a-case-study-in-the-co-construction-of-digital-interventions/.
Community-Designed Anti-Stigma HIV Campaigns: A Case Study in the Co-Construction of Digital Interventions


This project describes the cocreation of an HIV anti-stigma health campaign developed for the Desmond Tutu HIV Foundation. Together with youth from South Africa, American graduate students conducted workshops that resulted in poetry and public service announcements that could be used on websites and social media. This article includes a series of ethical considerations when developing a health campaign, as well as interviews and the finished public service announcements. Additionally, the author provides a series of “lessons learned” that might provide additional insights for other researchers and artists who are interested in engaging communities in social justice issues.


Several years ago, my colleagues and I developed a master’s degree in Strategic Communication for the Department of Communication at Westminster College in Salt Lake City, Utah. Building on our backgrounds in Communication and Marketing, the faculty envisioned a program that would allow students to explore the potential of digital media in corporate, government, and nonprofit settings. As the program evolved, we incorporated an international capstone project in which the students were required to assist nonprofit organizations with their digital communication needs. To date, we have worked with organizations in Peru, South Africa, and Asia.

In the project described in this paper, my colleagues Curtis Newbold, Elisa Stone, and April Smith, along with 12 graduate students from Westminster College, worked with the Desmond Tutu HIV Foundation (DTHF) to create public service announcements as a means of addressing HIV stigma. In South Africa, the project was overseen by members of the Desmond Tutu HIV Foundation, including Millicent Atajuna (Behavioral Scientist), Lavinia Browne (Marketing and Liaison), and Dante Robbertze (Youth Center Manager).

The graduate students from the United States had taken classes in rhetoric, multimedia, and strategic communication, with the international trip serving as the capstone project for the degree. As a professional program, most of the graduate students had worked in various fields for several years. It is interesting to note that the graduate degree is offered as a hybrid program, meaning that much of the coursework occurs via distance education, so the HIV project was the first time that the group had spent a significant time working in person.

Professor Elisa Stone and I traveled to South Africa on an initial fact-finding trip in which we interviewed several South African youth to determine what ideas could drive the anti-stigma campaign. The South African youth were all young adults, ranging in age between 18 and 20 years old. Most of the young people were part of the Xhosa community, which is a term that refers to the group as well as a language. Xhosa live in all parts of South Africa; however, Cape Town is home to the majority. Although language differences can be challenging, most people in South Africa speak several languages, and typically English is the language of choice for young people. This was extremely helpful, but, as will be described below, language is but one concern when working with another culture.

One of the themes that surfaced during our interviews with the South African youth was the idea that love can overcome most obstacles, including prejudice. Together with our South African partners, Millicent Atujuna, Lavinia Browne, and Dante Robbertze, we ruminated on the ideas from the interviews and eventually settled upon the core slogan: Love, Don’t Judge. This slogan became central to posters, bracelets, and videos that were created as part of the campaign. Upon our return to the United States, the students and faculty from Westminster College began to build upon the ideas developed during the initial trip. We planned to develop treatments, scripts, and storyboards at home, and then travel back to South Africa as a group to create these announcements. We soon learned, however, that this was a big mistake. Rather than imposing our ideas about what we imagined would be best for our target audience, we decided to let the youth in South Africa, including those we had interviewed, create the PSAs. Our team would serve in a more supportive role. We had come to see that those who knew intimately about stigma would be in the best position to address that experience in the most powerful fashion. Not surprisingly, the research literature supported this collaborative approach (Bess et al. 2009). To this end, in this essay, we describe the ways that American faculty and graduate students collaborated with faculty and staff from the Desmond Tutu HIV Foundation and South African youth to develop an anti-stigma health campaign.

The following paper is divided into five different sections. The first section includes a discussion of HIV and stigma in South Africa. A staggering number of South Africans suffer from the disease, and on top of the physical pain, they also face stigma in multiple aspects of their lives. The second section includes some of the ethical principles that we followed throughout the design of this health campaign. The third section describes the development process, including some early mistakes we made that were later rectified as the project continued. The fourth section describes the poetry and video workshops that were conducted in South Africa, and then the paper concludes with some final thoughts on the project. As Public is an online journal, several video clips are included, along with two examples of our finished public service announcements.

Following the theme of this special issue, titled “Digital Engagements—When the Virtual Gets Real,” our project focused on the ways in which youth in South Africa faced the painful realities of stigma. Through the use of digital storytelling, youth in South Africa expressed their individual lived experiences and potentially changed attitudes through digital storytelling. Interestingly, to tell their stories we began with poetry, which might be considered one of the oldest forms of storytelling, and then used digital technologies as a mode of expression. One of our insights, which we discuss in the conclusion of this essay, is that powerful storytelling and persuasion often results from the combination of traditional techniques and new technologies.


HIV Stigma in South Africa

South Africa has one of the highest rates of HIV in the world. As of 2015, seven million people were infected with the disease (UNAIDS 2015). The reasons for these high numbers, as one might imagine, are complex. One of the major contributing factors stems from denial by some of the country’s early leaders. In the late 1990s, Thabo Mbeki rejected the notion that the disease was caused by a virus. As a result, educational and social programs did not receive adequate funding or support. In 2009, with the election of Jacob Zuma, many hoped that policies would change; however, his new Health Minister, Dr. Aaron Motsoaledi, held similar views as his predecessors. In many ways, the leaders’ attitudes were reflected in South African society through fear and denial. However, over time and through internal and external pressure, Zuma’s cabinet has changed its policy. In recent years, Zuma himself has been publicly tested to promote awareness. Today, the country promotes aggressive programs to combat HIV through education and medical programs, but large numbers of individuals continue to be exposed to the disease. It is estimated that 2,000 women between 15 and 24 years of age are infected every week (Anna 2016).

The impact of the numbers cannot be overstated; however, the associated psychological trauma in the form of stigma that often accompanies the disease was long ignored by societies and governments. In May 2015, the South African National AIDS Council (SANAC) published the results of the most extensive analysis of HIV stigma in the history of the country. The findings were mixed; certain types of stigma were decreasing, yet stigma among the young adult population was on the rise (HSRC 2015, 19) .

According to the report, there were four different types of stigma: external, internal, anticipated, and courtesy (HSRC 2015, 9). External stigma refers to the types of behaviors that we typically think of as stigmatizing, such as violence and intolerance. Internal stigma manifests itself in the form of negative feelings, such as shame and guilt. Anticipated stigma is interesting in that it is the fear that one might face stigma rather than a reaction to others’ actual behavior. And finally, courtesy stigma is defined as prejudice by association (18). In the current project, we focus on the prevalence of external and internal stigma among youth populations in South Africa. According to the SANAC report, 36% of respondents experienced some form of external stigma (15) and 43% experienced feelings of internal stigma (18). Of those sampled, young females between the ages of 15–24 were especially vulnerable (19).

These statistics took on a deeper meaning for my students and colleagues as we listened to the narratives of the youth who experience stigma on a daily basis. For example, during the course of this project, I became close to several participants in South Africa. Soon after returning home, I received a painful phone call informing me that one of the students had passed away. This was a tremendous shock. During the initial trip to South Africa in which Professor Stone and I collected the interviews that formed the basis for the campaign, he seemed energetic and vibrant, but because of multiple pressures, including depression, loneliness, and family issues, which were compounded by stigma, he stopped taking his medications and succumbed to an early death. This was but one example of the realities that exist behind the numbers.

The SANAC study made seven recommendations to address the problem of stigma:

  1. share the results of the survey,
  2. start a national campaign against stigma,
  3. address internalized stigma,
  4. address TB-related stigma,
  5. strengthen confidentiality of health records,
  6. address poverty and food security of people living with HIV, and
  7. monitor and evaluate stigma related to TB and HIV (HSRC 2015, 25–26) .
Of the seven recommendations, realistically, it seemed that a group of American graduate students could focus on the second recommendation—developing a health campaign. Although our small group of faculty and graduate students did not possess the financial means to develop a national campaign, we were able to create smaller interventions that addressed the problem on a more limited scale.

SANAC’s study provided important information regarding stigma. It has been suggested that the inclusion of qualitative research can support data found in large-scale surveys, especially during the development of health campaigns (Achema and Ncama 2015). We began to glean important qualitative information during this project through multiple interviews. Through these interactions, we hoped to gain a better understanding of stigma through the eyes of young people living with HIV. We listened to numerous stories in which young people described feelings of isolation, shame, and rejection, including suicidal thoughts. In our research, we directly asked the South African young adults what they thought would be the best means of addressing stigma. Most of our participants mentioned the need for better education. They noted numerous misconceptions, including misunderstandings about how HIV was contracted as well as treated. Their analysis was supported by the historical trends in responses to HIV in the country.

We also hoped to learn what themes would resonate with youth throughout South Africa. We found that many of our participants believed that emphasizing the concept of nonjudgmental love could negate societal stigma. After much thought, together with our partners of the DTHF, we created a simple marketing slogan. Together, the entire group—US faculty and students and the South African young adults—settled upon the phrase “Love, Don’t Judge,” which we used on T-shirts, bracelets, and all of the marketing videos that we created after we returned to the States.


Interventions and Health Communication Recommendations: Guiding Principles

To implement the most effective health campaign, we analyzed the research literature related to HIV stigma. From our analysis, we then developed four guiding principles that became part of our strategy to develop the campaign.


Principle 1: Ethics Should Drive All Design Decisions

Health campaigns have frequently overlooked subtle ethical considerations when health care educators and communication specialists design interventions. For example, Guttman and Salmon (2004) noted that health campaigns often inadvertently reinforced negative stereotypes while attempting to address health issues. As a case in point, they described a foot-care pamphlet that was created in Israel for Ethiopian immigrants. In it, a woman was shown washing the feet of a man to demonstrate proper care of infections that often result from diabetes. In analyzing this pamphlet, members of a focus group disagreed on the overall message. Although the information was factually correct, some members of the group felt as though the pamphlet reinforced traditional gender roles (532); what may be considered a positive message to one group (proper hygiene techniques) can create negative effects for another (inequitable gender stereotypes).

A similar phenomenon was noted by Johnny and Mitchell (2006) in an analysis of the United Nation’s World AIDS anti-stigma campaign entitled “Live and Let Live.” They found that the impact of the campaign was less effective because the overall message reflected Western ideology, which was in direct conflict with local cultures. For example, one poster from the “Live and Let Live” campaign showed an image of a father glaring down at his son who stood just out of the frame. The text for the poster read, “You are no longer my son.” At the bottom of the poster appeared the slogan “Fight fear, shame, ignorance, and injustice worldwide.” The message was intended to communicate the pain resulting from intolerance, but the positioning of the figure reinforced “patriarchy” and a general lack of “emotion,” suggesting the father-son bond could be easily broken in the face of disease (761). In other words, messages must be carefully crafted in consultation with target audiences to avoid cultural pitfalls.

We too initially fell into this trap. As outsiders, we developed a series of prototype posters to be considered by our partners at the DTHF. We were quite proud of our work that featured happy children, the colors of the South African flag, quotes from Bishop Tutu, and beautiful rural settings. We were surprised to find that we had missed the mark; we did not realize that the models we had selected were from a particular tribal group and location in South Africa to which none of the South African youth in our group belonged. Our partners at the Desmond Tutu HIV Foundation (Millicent Atujuna, Lavinia Browne, and Dante Robbertze) politely informed us of our mistake, and we reworked our designs by utilizing key insights gained through our dialogue with the South African students as opposed to a top-down design process.


Principle 2: Cultural Norms Should Support Design Decisions

Although there are numerous cases in which health campaigns failed due to cultural insensitivity, there are also examples of ways in which researchers benefitted from “insider” knowledge gleaned from the local culture. For example, Achema and Ncama (2015) analyzed the ways in which the concept of ubuntu affected the care of children. The concept of ubuntu may be unfamiliar to some in the United States, but it is a well-known term in many African countries and it is especially well-known in South Africa. It can be translated to English as a general sense of humanity in which we are all members of the human race. Following this philosophy, individuals are expected to share communal resources, care for the sick, and generally support those in need. Although the term is quite old, it has received wide attention in recent years, especially since apartheid ended in South Africa, and it is frequently cited as part of the philosophy of Nelson Mandela. By building upon the concept of ubuntu, Achema and Ncama (2015) were able to determine how to implement health campaigns that would be particularly effective in the care of children.

When designing a health campaign, it is often difficult for health communicators to develop the kinds of productive relationships that result in an acute sensitivity to an affected community’s cultural norms. One approach is to use participants within a focus group in order to determine the effectiveness of health messages. For example, Cooper, Gelb, and Chu (2014) analyzed this method in a health campaign related to gynecological cancer. They found that the typical steps used to create any health campaign followed a four-stage process:

  1. identify intended audience,
  2. develop and test communication concepts,
  3. implement the program with the intended audience, and
  4. itest the impact of the message (488).
Note how this process assumes that the message will be developed by outsiders and only tested with the intended audience. During our project, we found it to be more effective to include the participants beginning at step two rather than three. This earlier collaboration allowed us to integrate our participants throughout the entire process.

Bess et al. (2009) provide an excellent description of the ways in which participation often followed a spectrum of integration between the research team and the intended audience. By analyzing several different health organizations, they identified a series of possible relationships that emerged, ranging from tokenism to true political engagement. They recommended that participants must be actively engaged, participate as partners rather than clients, and feel a true sense of power as part of the collaboration. The difficulty, it seemed, was in the practical application of these concepts. One way to create an effective partnership was to settle upon common values between researchers and participants. According to Nelson, Prilleltensky, and MacGillivary (2001), when working with what they term “oppressed” groups, an organization should focus on the values of “caring, compassion, community, health, self-determination, participation, power-sharing, human diversity, and social justice” (649). Establishing these parameters from the beginning of a partnership was of particular relevance. Just as an effective organization derives focus from developing a mission statement, so too does a health campaign when both the researchers and the participants understand the values that will inform the intended outcomes.

Building upon the ideas of Nelson, Prilleltensky, and MacGillivary (2001), we faced a particularly challenging situation because our target audience was not only from a drastically different culture than our own, but they were also primarily young adults. According to Ozer et al. (2013), implementing health campaigns with youth presents both challenges and benefits. Although Ozer et al. (2013) focused primarily on social issues related to the classroom, some of their recommendations aligned with what other researchers have found in the field. Specifically, they recommended that young people should have a true sense of power in the campaign and self-select projects for greater motivation (20–21).


Principle 3: Messages Should Go Beyond Mere Information

One of the most challenging aspects of any health campaign is designing the messaging. Brown, Macintyre, and Trujillo (2003) conducted a meta-analysis of 22 different anti-stigma health campaigns to determine their effectiveness. They found that most campaigns fell into four different categories: information-based, skills-building, counseling, and contact with infected groups (53). According to the researchers, a majority of the campaigns had a positive effect, but often these gains were short-lived. Interestingly, the most effective campaigns combined information-based approaches with skills-building (65). This was a significant finding for our project. Rather than simply focusing on factual information related to stigma, we determined that it was equally important to focus on coping skills that would assist our participants.

The Desmond Tutu HIV Foundation (DTHF) was already implementing workshops that allowed youth to learn basic coping skills, and we were able to observe their process in action. During our stay, we attended regularly scheduled workshops held by the Foundation in which youth who were HIV positive took part in groups that provided a support system for the individuals. These meetings were also a useful opportunity for DTHF staff members to convey information related to interpersonal communication, job skills, and even meditation. We learned a great deal through these observations about the ways in which interventions must go beyond creating the message itself if we wanted to work with the South African young adults in a truly integrated fashion.


Principle 4: Interventions Should Be Personal And Structural

One of the most important findings in our research related to the idea of a multilevel approach to stigma as described by Cook et al. (2014). They, like Guttman and Salmon (2004), analyzed numerous campaigns to determine how best to address stigma. Cook et al. (2014) divided campaigns into intrapersonal, interpersonal, and structural interventions (102). Intrapersonal interventions focused on individuals and their environment. With this type of campaign, the individual learned new ways of coping, such as cognitive strategies, expressive writing, and instilling a sense of belonging. Interpersonal interventions, by contrast, brought groups of individuals together to address issues of stigma. For example, in the case of HIV, it could be helpful to bring infected individuals together with those who were not infected in order to humanize the disease. Finally, structural interventions were often the most difficult to implement. A structural approach attempted to change the ways an entire society thought about a disease. This was often accomplished with major media campaigns or legal actions. The most effective approach included all three levels of intervention: intrapersonal, interpersonal, and structural (Cook et al. 2014).

By way of summary, our findings could be boiled down to four key ideas that guided our approach:

  1. Ethics should drive all design decisions.
  2. Cultural norms should support design decisions.
  3. Messages should go beyond mere information.
  4. Interventions should be both personal and structural.

In the section that follows, we expand on these four steps in a description of our process through a detailed case study.


Design and Development of the Campaign


Initial Visit and Identification of Themes

Our initial step was to visit the target population in order to gain a better understanding of the culture and to identify themes that would resonate with South African youth. To this end, my colleague, Professor Elisa Stone, and I traveled to South Africa in early October 2015. On this trip, our partners at the DTHF—Millicent Atujuna, Lavinia Browne, and Dante Robbertze—invited us to participate in a workshop in the Gugulethu township, which was located about 15 km outside of Cape Town. The DTHF was active in this area where, in partnership with the Western Cape Provincial Department of Health, they run a clinic for individuals living with HIV. In addition, the DTHF provided support through a youth group that met every Saturday. The DTHF members addressed health concerns, provided coping mechanisms, and ensured that the youth were taking the necessary medications.

On the Saturday that we visited, the youth arrived at a small building next to the clinic that served as a community center. Around 15 individuals had gathered, along with their caregivers, to discuss communication techniques. The caregivers had been invited to address communication practices that differ between youth and their elders among Xhosa. According to Xhosa custom, it is disrespectful for young people to look directly into the eyes of their elders while talking. By contrast, when the youth apply for jobs, employers expect them to shift this cultural norm by looking directly into the eyes of those with whom they work. Observing the workshop was very helpful and reinforced our need to address cultural differences. Like the caregivers, we came from a completely different background than these South African young people, and in our case the differences were pronounced.

Once we had finished participating in the discussion, we were given an opportunity to interview some of the participants as a means of collecting qualitative data for our health campaign. We interviewed members of the group, some of their parents, and the Desmond Tutu staff who conducted the workshop. We hoped to better understand key issues, but more importantly, we hoped to identify messages that would resonate with the youth. One of the themes that emerged was the idea that the youth had an acute understanding of the disease. They understood the challenges they faced and how others might perceive them. They also had very specific ideas on how best to address the problem of stigma. The South African youth saw education as a key component because, based upon our interviews, many South Africans were not aware of the differences between HIV and AIDS—both youth and older members of the community. Further, our interviewees believed that if the general population better understood these differences, then stigma would decrease.

A second theme emerged as well. Although we in the US see examples of individuals who are HIV positive and live happy, healthy, and productive lives, many of the youth mentioned that this understanding was not as prevalent among the populations of South Africa. It became clear that healthy representations of people with HIV and AIDS should be integrated into our campaign. On a personal level, we found the youth to be energetic, to have impressive dreams for the future, and to see themselves as leaders in South Africa.

And lastly, and perhaps most importantly, we learned that the participants felt judged in many aspects of their lives. To them, stigma was one of the painful realities that they faced on a daily basis. When questioned, they suggested that a nonjudgmental stance of “love” should be included in all marketing materials. Once we had collected these video interviews, we returned to the States and analyzed them with our American students as a means of understanding the target audience and coming up with an approach that would counter the stigma that the youth faced.


The Workshops

Upon our return to the United States, the graduate students were energized by the videos and supportive of the “Love, Don’t Judge” campaign. We conducted many brainstorming sessions to determine the best means of implementing this campaign. We developed treatments, scripts, and storyboards that featured the youth we had interviewed. As our plans took shape, I submitted ideas to our contacts at the DTHF. They appeared supportive, but I sensed some hesitation. The students and I discussed possible concerns, and as a result, we returned to the values we had uncovered through our research of other health campaigns, specifically, the idea that an ethical grounding should drive our design decisions. It occurred to us that we had imposed our ideas on how to best create a campaign for the youth, rather than working with them as partners. As a result, we decided that we should wait to design the campaigns until we actually returned to South Africa, where we could conduct workshops in which the youth would be true partners (Bess et al. 2009).

We knew it was important to prepare some general parameters of how to develop the campaign, so we took a quick inventory of the skills that we possessed within the group. Many of the American students had an interest in poetry, and one student in particular had published several books of poetry. DTHF had recommended that one of the outcomes of the project should be several PSAs that could be shown on social media. Consequently, we decided that we would conduct workshops in poetry and filmmaking over a two-day period that would result in media elements that could be posted on the Foundation’s website and other social media channels. Several months later, the graduate students and American faculty returned to South Africa with an assortment of video gear and a desire to cocreate (Cook et al. 2014) a health campaign that would be beneficial to the participants as well as the organization.


The Poetry Workshop

The Desmond Tutu Youth Center is located in Sunnydale, which is a small township outside of Cape Town. The Center was created to serve the youth in a multitude of ways, including offering health services, education, and recreation. We met there with the initial group of youth who had been interviewed, along with several other students. Dante Robbertze runs the Center, and he, along with Lavinia Browne and Millicent Atujuna, made it possible for us to conduct the workshops. Although we had met some of the youth on our initial trip, we were not sure how much experience they had had with poetry. As an initial step, my colleague, Elisa Stone, provided an overview of how poetry could act as a form of personal expression. She provided a prompt in which participants completed a worksheet to create simple poems. We hoped that this initial experience would break down barriers and get all of the participants (youth and students) comfortable with the idea of writing and sharing poetry. The following video clip includes several examples of the short poems that resulted from the exercise.


Figure 1: Poetry exercise.
Video by Rulon Wood.


In viewing the video clip, note that the participants and students seem a bit hesitant to share their feelings. This was expected, especially in a situation that was potentially uncomfortable and, particularly, when the topic was emotionally charged, such as health issues. It was important to include, within workshops, time to converse, share stories, relax, and create connections beyond the project. Much of this relationship building occurred during times we were not filming: lunch breaks, playing soccer, or relaxing as a group. To illustrate this concept, the following video clip shows some of the activities that occurred after the initial reading in which participants began the writing process.


Figure 2: Building relationships between workshops.
Video by Rulon Wood.


After a few breaks and some time to decompress, we reconvened for our workshop. This time, we moved beyond the simple exercises with which we began, and we asked the participants to discuss the issues that were most pressing in their lives, as related to stigma. In terms of our guiding principles, we hoped to focus on the individual (through the benefits of art as a form of expression) as well as to create structural changes in society through the creation and posting of our poetry in the form of public service announcements. The differences that I observed between the early morning workshops and the work produced after we all became more comfortable were astounding. The following video clip includes some of the work that the Americans and South Africans shared as the day progressed.


Figure 3: Relationship building.
Video by Rulon Wood.


As became clear from the confessional poetry that surfaced toward the end of the day, I believe that a level of trust had been built between my students and the South African youth. Note, for example, the themes that emerged. Both groups were willing to share stories of loss and pain. One of my students, for example, wrote about her struggles to face the profound loss of her uncle as a result of AIDS. Another shared her experience with abuse and mental illness. This, in turn, created a more vulnerable space in which the youth talked of feelings related to raising children, experiences with gangs, and other daily struggles including stigma. What was most relevant for the project, however, was the fact that our outsider status had changed and the entire group (students and participants) became part of the effort to create a message that could be shared with the world as a means of reducing stigma.


Video Workshops

On the second day of the workshops, we arrived with our video gear. This included four cameras, microphones, tripods, and some lighting equipment. Unlike the poetry workshop, which required few technical skills, the video workshop necessitated a bit more time to instruct the participants on framing shots, shooting, and collecting audio. With such a short period of time to produce the PSAs, we anticipated that the production values of our videos would not be as high as professionals might produce; however, we felt that the importance of inclusion far outweighed the benefits of a highly-polished video production.

We began the workshop by highlighting our theme: “Love, Don’t Judge.” We spent a significant amount of time discussing a world in which stigma was eliminated. Further, we talked about how we could encourage that kind of world through our experiences as shown through film. Our general approach was to get the group to work together and produce as many ideas as possible before actually filming the PSAs.


Figure 4: Developing ideas as a group.
Photo by Rulon Wood.


One of the benefits of working together in the poetry workshop was a strong sense of community in which both groups (American students and South African youth) felt comfortable working together, and neither group appeared to monopolize the conversation or the ideas. Out of our discussions, we generated various approaches to the videos. From those initial ideas, we further developed concepts into four different treatments. From these, we refined the ideas and created a series of storyboards. With our plans in place, we divided into groups and began to shoot the videos. I must confess that I was a little nervous that we might not be able to produce the videos in such a short period of time, but I was extremely pleased with the results. I have included examples of two of the videos. Building upon the concept of “Love, Don’t Judge,” the following PSA focuses on the idea that we are all part of the same “tribe,” and as such, we should care for one another.


Figure 5: PSA 1.
Video by Rulon Wood.


Note how this PSA included some of the same themes as identified in the study by Achema and Ncama (2015) in which the African concept of ubuntu played a central role. Had we written the script without the input of the youth, it is unlikely that this theme would have played a major role in our campaign. To me, this was a testament to the importance of true partnerships when it came to the creation of any health campaign.

Another example demonstrates the ways in which the groups worked together. Building upon the theme of education, the following PSA applied a fact-based approach, in which the South African youth presented common misconceptions and then explained the ways in which STDs can be contracted.


Figure 6: PSA 2.
Video by Westminster College Students and Tutu Youth.


This PSA applied the themes that we had identified in our early research. As noted, during our first visit our participants mentioned that one way to combat stigma was through better education, which is shown in this video. Additionally, the youth followed the principles outlined by Brown, Macintyre, and Trujillo (2003), in which campaigns combined information with more personal narratives—in this case, the personalities of the participants enhanced the educational message.

The video workshops were successful on a multitude of levels. My students gained a better understanding of how to develop a campaign through collaboration with participants. And the youth in South Africa were empowered to develop a campaign in which they were invested as cocreators. In the end, both groups benefited from this approach to health communication. Perhaps most importantly, the videos and other materials could now be used as part of the campaign to address stigma in South Africa.


Impact of the Campaign and Limitations

When we began this project, we hoped to address stigma through videos shared on social media. The dissemination of these videos is still underway, but some key findings have changed my thinking about digital engagements. First and foremost, as we have long known in the arts, all members of a community, when given the opportunity, produce inspiring works. As we utilize digital interventions in health campaigns, the same principle holds true. Communities who grapple with health issues on a personal level are in the best position to design messages, develop them through various media, and then share them through their own channels. Further, I feel that we have an ethical responsibility to approach health campaigns in this manner. Otherwise, we are simply imposing our ideas on others in a top-down approach that is likely to fail.

I have also come to the realization that it is necessary to approach digital interventions with a degree of flexibility. Some members of our team, including myself, were somewhat nervous about traveling to South Africa without firm plans in place regarding the production of our videos. Yet many of our most useful ideas developed spontaneously over the course of the workshops. This is not to say that one should approach a project such as ours without any preparation. We had done our research, established parameters and goals, and then entered the field; however, our initial treatments, storyboards, and scripts could have negatively impacted the success of our campaign had we been bound to a preconceived notion of what we would create.

One of the most profound lessons we learned was that a symbiotic relationship exists between art and health campaigns. The poetry workshops with which we began were initially conceived as an “ice breaking” activity. But, as the project continued, the ideas that surfaced through the poetry became core to the campaign itself. The participants were able to share ideas that provided core concepts for the public service announcements. Note, for example, how one of the participants shared a poem about his fears in raising a young daughter. From this poem, one of the groups developed a PSA that focused on how receiving treatment for HIV would impact generations to come. In other words, there was a reciprocal relationship between the more artistic expression of the poems and the resulting public service announcements that became the core of our campaign.

Perhaps most importantly, the greatest lesson I learned from this project was the idea that profound emotional engagements often surface from digital interventions. Digital interventions have great potential to change the world in terms of social justice issues, but on a personal level, they frequently impact participants through the process of creation. For the youth in South Africa, I am hopeful that they felt empowered to continue their journey by sharing stories through poetry, video, and other means. And for my students, the intervention offered the opportunity to interact with individuals they might not otherwise encounter. Together, in the space afforded by the project, both groups experienced a moment of “Love, without Judgment,” which I believe is the most important kind of engagement.

As with any project, there are limitations that affect the outcomes. Certainly, that was the case with our work. Stigma continues to be a serious problem throughout South Africa, and in order to bring about lasting change, it will be important to measure the effects of campaigns like the one that was cocreated by our students and the youth in South Africa. While the process of creating the videos for this project had a profound effect on the students from the United States, as well as the youth who participated, we could not measure or assess the effectiveness of our message with the target audience. With additional resources and more time, we would have planned better ways to test the final videos with other members of the target audience in order to measure the effectiveness of our message. Future researchers would do well to consider the principles outlined in this project and apply them in ways that can be more fully measured through systematic analysis.


Final Thoughts

Teresa Mangum and Kathleen Brandt, the editors of this special issue, pose an important question as a central theme: What is the role of digital technologies in addressing issues related to social justice? We believe that this case study provides a few insights that might help us to partially answer this question. We believe that many young people throughout the world possess an inherent fascination with digital technologies that can be leveraged to tell their stories. For example, upon my arrival at the Desmond Tutu Youth Center, two young musicians were excited to show me a recording booth that they had created with the help of Dante Robbertze, the manager of the Center. The booth was equipped with Garage Band, a mixer, speakers, and microphones. As they played several tracks from their soon-to-be released album, I was amazed to hear the powerful lyrics that described their experiences. Although the booth was somewhat meager, their artistic expressions demonstrated a command of the art form. Without digital technologies, this music would not have been possible. In a sense, the equipment gave them voice. I have no doubt that this music will one day reach a broad audience and have an impact on those living in South Africa and impact the conditions in which people live.

Later that day, Dante introduced me to a second young man who dreams of becoming a film director. As a professor who teaches film, I hear this dream quite a bit, and I have learned that many students have a desire, but not necessarily the drive it requires to learn the craft. To my delight, the young man in South Africa listed book after book he had read on the topic in order to prepare for his future. What he may lack in terms of monetary resources, he more than makes up for in heart. And, with the digital revolution in which feature films are being produced on iPhones, his creative potential will be realized.

One of the most inspiring moments of the project occurred when we began to shoot the public service announcements. One of the young women who were involved in the production asked me if she could run the camera. Of course, I responded that I hoped she would. As she looked through the viewfinder, she explained that it was like a “dream come true.” Many of us take for granted, I believe, the digital technologies available to us, and as these tools become more readily available to everyone, I suspect that the art form will progress in new and interesting ways that we never imagined.

Technology, it seems, is only part of the answer. Consider the relationship between digital technologies and older art forms as a means of creating digital engagements with the youth in South Africa. Our project would have stalled had we not considered the use of poetry (one of the oldest art forms) as a form of expression. Poetry provided a means for the group to engage in creative thoughts and break the walls that inhibited personal expression. It was important for my colleagues and me to realize that no matter how accessible digital technologies may become, without a grounding in traditional art, there is very little meaningful content that will drive social change. Yet when coupled together, something powerful occurs.

We are seeing change all around us as communities engage in issues to promote equality: protests on the streets of Washington, D.C.; citizen journalism in Egypt; or, as in the case of this study, a young person in South Africa discussing stigma. As we look forward to collaborations with those who face the worst kinds of violence, digital engagements with one another have the potential to make a lasting and meaningful change.


Work Cited

Achema, Godwin, and Busisiwe Ncama. 2015. "Ubuntu: Guiding Philosophy of Care for Children with HIV/AIDS in Nigeria." African Journal for Physical, Health Education, Recreation and Dance 21 (4.2): 1457–1468.

Anna, Cara. 2016. “Global AIDS Conference Exposes South Africa’s Dramatic Turn.” Washington Post, July 17. https://www.washingtonpost.com/world/global-aids-conference-highlights-south-africas-dramatic-turnaround/2016/07/17/57495184-4c5f-11e6-a422-83ab49ed5e6a_story.html?utm_term=.5b2174c275d8.

Bess, Kimberly D., Isaac Prilleltensky, Douglas D. Perkins, and Leslie V. Collins. 2009. "Participatory Organizational Change in Community-Based Health and Human Services: From Tokenism to Political Engagement." Community Psychology 43 (1–2): 134–148.

Brown, Lisanne, Kate Macintyre, and Lea Trujillo. 2003. "Interventions to Reduce HIV/AIDS Stigma: What Have We Learned?" AIDS Education and Prevention 15 (1): 49–69.

Cook, Jonathan E., Valerie Purdie-Vaughns, Ilan H. Meyer, and Justin T. A. Busch. 2014. "Intervening Within and Across Levels: A Multilevel Approach to Stigma and Public Health." Social Science and Medicine 103: 101–109.

Cooper, Crystale, Cynthia Gelb, and Jennifer Chu. 2014. "What’s the Appeal? Testing Public Service Advertisements to Raise Awareness About Gynecologic Cancer." Journal of Women’s Health 23 (6): 488–492.

Guttman, Nurit, and Charles T. Salmon. 2004. "Guilt, Fear, Stigma and Knowledge Gaps: Ethical Issues in Public Health Communication Interventions." Bioethics 18 (6): 531–552.

HSRC (Human Sciences Research Council). 2015. The People Living with HIV Stigma Index: South Africa 2014 Summary Report. Cape Town: South Africa National AIDS Council.

Johnny, Leanne, and Claudia Mitchell. 2006. "Live and Let Live: An Analysis of HIV/AIDS-Related Stigma and Discrimination in International Campaign Posters." Journal of Health Communication 11 (8): 755–767.

Nelson, Geoffrey, Isaac Prilleltensky, and Heather MacGillivary. 2001. "Building Value-Based Partnerships: Toward Solidarity with Oppressed Groups." American Journal of Community Psychology 29 (5): 649–677.

Ozer, Emily J., Sami Newlan, Laura Douglas, and Elizabeth Hubbard. 2013. “’Bounded’ Empowerment: Analyzing Tensions in the Practice of Youth-Led Participatory Research in Urban Public Schools.” American Journal of Community Psychology 52 (1–2): 13–26.

UNAIDS. 2015. “HIV and AIDS Estimates.” UNAIDS. Accessed July 29, 2017. http://www.unaids.org/en/regionscountries/countries/southafrica/.

This work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivs 3.0 Unported License.
Creative Commons License