This is My Story: participatory performance for HIV and AIDS education at the University of Malawi

Abstract

University students represent a subset of young men and women at risk for HIV in high prevalence settings. Innovative programs are needed to raise awareness on the unique issues around HIV and AIDS in the university campus, while training student leaders for peer-based education. The Process and Collaboration for Empowerment and Discussion (PACED) method engages artists and people living with HIV and AIDS (PLWHA) to create a performance that encourages community dialog about HIV and AIDS and empowers PLWHA. ‘This is My Story’ was a program at the University of Malawi, Chancellor College, which adapted the PACED approach for university students. A qualitative evaluation conducted 1 year later among students and PLWHA participants and audience members demonstrated retention of the following themes: (i) trust in a relationship and how it affects women,(ii) equality for PLWHA and (iii) life after HIV and AIDS. All of the PLWHA and 90.9% of student participants reported a greater sense of empowerment. Of the audience members, 82.1% discussed the performance with friends and family. We thus present the PACED approach as a valuable tool in HIV and AIDS education and prevention among university students in Malawi.

Introduction

New HIV infections in sub-Saharan Africa are highly concentrated on young men and women aged 15–24 years [1]. Within this age group, university students have unique risk factors for infection. They are often away from their families, leading to decreased supervision, with greater exposure to peer pressure and stress as they transition into adulthood and sexual maturity [2, 3]. In this setting, sexual activity is high, with several surveys in sub-Saharan colleges reporting 80–87% sexual activity among students [2, 4, 5]. At the same time, condom use is low; a survey in Madagascar found that only 5.7% of sexually active students were using condoms regularly [5]. Testing is also a challenge, as studies in Botswana and Tanzania found that students were concerned about confidentiality and stigmatization [3, 6]. These factors may contribute to an increased risk of HIV acquisition in university students in sub-Saharan Africa; for example, a recent study in Nigeria found a 9.9% HIV prevalence among tertiary students [7].

With ∼5 million people aged 15–24 years living with HIV worldwide, there is a need for prevention programs that are community based, multidisciplinary and empower young people to be self-advocates [1, 8, 9]. The arts can play a strong role in such programs, by creating an engaging forum for students to explore their barriers to prevention and to develop solutions specific to their setting. Participatory theater is a form of drama, based on the ideas of Paulo Freire and Augusto Boal, which suggests that process is an important element to facilitate this discussion and allows communities to play a larger role in representing local context and motivating future development [10].

The PACED (Process And Collaboration for Empowerment and Discussion) method is an arts-based approach to HIV and AIDS messaging that places artists and people living with HIV and AIDS (PLWHA) in an intense process focused on community participation, trust building and the structural and cultural barriers to HIV prevention [11]. The goals of the PACED approach are to generate community discussion about sociocultural issues in HIV prevention, while empowering PLWHA as advocates [11].

The PACED approach was performed in Ghana with professional artists in community settings, but it was unknown whether it could be adapted to the university campus [11]. This article describes the theory and implementation of the Chancellor College-UCLA HIV and AIDS Performance Project, which applied the PACED approach to the largest university in Malawi. In addition, we present results from a qualitative evaluation 1 year after the performance that assessed if the PACED approach could promote ongoing discussion of sociocultural issues in HIV and AIDS and raise perceptions of empowerment among the drama students and PLWHA.

Theoretical framework

Francis describes three categories of how drama has been used in HIV interventions [12]. First, as ‘didactic’, drama can serve to deliver knowledge to an audience through direct messages, such as a school-based event to teach condom use. Second, drama can act as ‘spectacle’, through productions that utilize entertainment to draw a large audience to present ideas in HIV and AIDS. Entertainment–education has been used in the past in HIV prevention programs, such as radio shows and serial dramas [13]. For example, the Modeling and Reinforcement to Combat HIV (MARCH) initiative has utilized entertainment–education in radio serial dramas in several areas in sub-Saharan Africa, including Zambia and Botswana [14–16]. Storylines include a young man with multiple sexual partners or a family member who is sexually abusing a daughter [16]. Based on Bandura’s Social Learning Theory, characters reflect positive and negative behaviors that the audience learns to model appropriately [17].

Finally, drama as ‘process’ encourages young people to engage in HIV and AIDS through discussion and opportunities to participate in the performance. Building on Boal’s Theater of the Oppressed and Forum Theater, Francis notes how this form may create openness in discussion around sexuality and HIV [12]. In Augusto Boal’s Theater of the Oppressed, a dialectical relationship is formed and spectators are transformed to ‘spect-actors’ who participate in exercises and/or performances that allow them to explore and address oppressive structures [18]. Theater for Development extends these concepts to communities, in which the stakeholders have a primary role in determining the content that better reflects the sociocultural issues specific to their setting [19]. Within this realm, folk media utilizes local art forms such as drama to create dialog in a culturally appropriate manner [20]. The goal of utilizing these frameworks is to develop a more participatory approach in which the process of developing the performance takes precedence over the product, reflects the context-specific issues of the community and seeks to empower activists that can address these problems. The Drama Approach to AIDS Education or DramAide, for example, is an initiative in KwaZulu-Natal, South Africa, that conducts participatory workshops with secondary school students that combines theater, dance and posters around issues in HIV and AIDS [21]. A randomized trial of the initiative found that students who participated had a significant increase in knowledge and condom use compared with those who did not participate [22]. The Themba Interactive program further describes how role-play can be integral to represent characters, emotions and constructs, which can then elicit responses from the audience and involve them in the process and discussion of topics in HIV and AIDS [23]. Singh describes a workshop of how narratives through performance allowed drama students to connect individual stories to broader cultural and environmental constructs in the context of HIV and AIDS [24].

The PACED approach recruits local artists and PLWHA to undertake an intense process to explore the barriers to HIV prevention and transform these themes into a performance for their community. The artists collaborate with PLWHA, utilizing their personal experience as an avenue to approach the epidemic. The PACED approach has elements of drama as didactic and spectacle, as main themes are developed by participants and transformed into an entertaining performance to attract the campus to attend. However, the use of process allows for a critical addition of the ‘dialectic’, the ability for participants to negotiate ideas in HIV and AIDS [12]. In applying the PACED approach to the university setting, we seek to provide students and PLWHA a space to ‘rehearse’ contextual barriers to their health in HIV prevention, to create a performance that can resonate with the audience while building avenues for greater discussion. Based on Jo Rowlands’ view, the process may also develop three forms of empowerment: personal (the individual confidence to challenge oppression), relational (the ability to negotiate decisions that influence oppression) and collective (action that addresses structural factors to oppression, such as gender and racial hierarchies and poverty) [25].

Methods

The PACED method was implemented in 2006 in Ghana in the local performance art form of the concert party [11]. Through the collaboration of five professional artists and five PLWHAs, a performance was created that toured 11 towns and villages throughout Ghana. Post-performance evaluation suggested that the PLWHAs perceived a greater sense of empowerment, while the audience members reported that the themes from the performance motivated them to discuss the issues with others in their community [11]. Chancellor College at the University of Malawi, the largest tertiary school in Malawi, provided an opportunity to adapt the program to the university setting, in a country with a high burden (10.6%) of HIV, especially among young men and women aged 15–24 years [9].

During the summer of 2008, the Chancellor College-UCLA HIV and AIDS Performance Project took place in Zomba, Malawi. Directed by the organizers of the Ghana initiative specialized in community theater, the program engaged 14 University of Malawi and Chancellor College drama students and 6 PLWHA in a 5-week process that culminated in a performance titled ‘This My Story’. Applying their experiences in Ghana to the university setting provided the organizers an opportunity to explore unique barriers to HIV prevention for this population, include drama students as artists and build stronger relationships between students and the PLWHA in their community.

Participants in the program consisted of drama students and adult PLWHA from the community. The process seeks to expose drama students to issues in HIV and AIDS while preparing them as student leaders on their campus for HIV prevention and education. Auditions were conducted for student participants in the drama department. The goals of selection were to identify outgoing students who represented a variety of viewpoints to spur discussion during the program. To determine this, students were asked a series of questions related to personal beliefs on different social issues and evaluated based on their communication skills to express their opinions. Students also needed to be available to participate in the full 5 weeks of the program, in addition to the performances. In total, 14 students were selected, 7 men and 7 women in the third or fourth year of university.

PLWHA were selected from PLWHA support groups in Zomba and Lilongwe, Malawi’s capital. In addition to being HIV positive, recruitment was similar to students and PLWHA were asked about their viewpoints on a variety of social issues and evaluated on their communication skills. In addition, they needed to be healthy and medically cleared to participate in the program that would require physical activity and long days. Six PLWHA were selected; the mean age of the PLWHA group was 33 years, range 26–60 and consisted of three men and three women.

The PACED method contained eight stages completed over a 5-week period. These stages included [11]:

1. Gaining knowledge: information sessions on HIV and AIDS.

2. Breaking barriers: participants built trust through activities and theater games.

3. Depth of understanding: through theater exercises, participants shared personal stories and discussed the complex issues surrounding HIV and AIDS.

4. Empowerment: by utilizing methods from Theater of the Oppressed, participants explored sources of power within oppressive situations.

5. Theme development: participants generated themes based on their discussions. and voted on main themes for the performance.

6. Processing: the themes were formulated into a storyline for a performance.

7. Rehearsal/production of the performance.

8. Performance for the community.

Evaluation

The Chancellor College-UCLA HIV and AIDS Performance Project conducted an anonymous evaluation from 15 June to 16 July 2009, 1 year after the performance for participants and audience members. Participants (drama students and PLWHA) were contacted by phone and asked if they would volunteer to be interviewed about their experience in the project. For audience members, interviewers were stationed in front of the main courtyard of the university, for maximum flow of students from a variety of disciplines. Students were asked if they attended the ‘This is My Story’ performance 1-year earlier and if they were willing to volunteer for an interview. They were also informed that the interview would be conducted in a private room, and it would be anonymous, with no identifying information asked or collected. In total, 46 semi-structured interviews were completed by convenience sampling comprising three groups: student participants (N = 11), PLWHA participants (N = 6) and student audience members (N = 29). Three student participants declined the interview because they were unavailable during this time period. One audience member was excluded because the interview was incomplete. The resulting total was 45. As noted, information was anonymous and no identifying or demographic data was obtained. This research was exempted by the Chancellor College Ethics Committee and given a non-human subjects designation by the UCLA Institutional Review Board, as the data analysis team at UCLA did not have direct human subjects contact and the data did not contain any identifying information.

Prior to each interview, the individual provided verbal understanding that the interview was anonymous and consented to recording. The mean interview time for student participants was 33.3 min (range 18–55) and for PLWHA, 29.4 min (range 12–52.7). For audience members, the mean was 22.2 min (range 13.8–46). The interview consisted of three sections: knowledge about HIV and AIDS, perceptions of HIV risk and stigma against PLWHA. In the knowledge section, individuals were asked to name methods of transmission of HIV infection, methods for prevention of infection and whether they knew the location of local HIV testing centers. For perceptions of HIV risk and stigma against PLWHA, participants and audience members were asked to describe if ideas or scenes from the performance influenced their ideas about these topics. They were then asked if they had discussed the themes from the performance with friends and/or family. Finally, participants were asked to describe any increased confidence in personal HIV and AIDS prevention (personal empowerment), new role as leaders (relational empowerment) and/or advocacy (collective empowerment). Interviews took place in English, were digitally recorded and transcribed into English by the respective interviewer. Three interviews with PLWHA were conducted in Chichewa, with translation into English.

With the anonymous transcripts, two analysts at UCLA conducted descriptive thematic analysis to determine whether participants and audience members described their experience in terms of the three top-voted themes after the workshop: (i) trust in a relationship and how it affects women, (ii) equality for PLWHA and (iii) life after HIV and AIDS. The ‘Trust’ theme was coded if individuals noted how concurrent sexual relationships place a partner, in particular women, at risk of HIV infection. The ‘Equality’ theme was identified if the performance motivated them to think about the importance of equal rights and involvement of PLWHA in society. The ‘life after HIV and AIDS’ theme was noted if the performance showed them that HIV positive individuals could have a similar quality of life as those who are HIV negative. Empowerment was identified if a participant stated a greater sense of self-efficacy (personal empowerment), leadership (relational empowerment) or desire to be involved in HIV and AIDS advocacy (collective empowerment). The coding was conducted independently by the two analysts, and then compared to achieve consensus. Fisher’s exact testing was performed to determine whether there was a difference in reported HIV knowledge or themes among the three groups. Significance was defined as P < 0.05.

Results

In the 5 weeks of the PACED approach, the participants (students and PLWHA) went through eight stages, namely gaining knowledge, breaking barriers, depth of understanding, empowerment, theme development, processing, rehearsal/production and ultimately the performance.

Gaining knowledge

In the first week, participants attended a knowledge workshop lead by physicians specializing in HIV and AIDS care. The purpose of the training was to provide a foundation and introduction to the topic. After 1 year of the performance, we evaluated general understanding of HIV through self-report of transmission and prevention methods and knowledge of testing centers, and compared it with the audience members who did not participate in the workshop (Table I). Our findings suggest that knowledge is similar among participants and audience members. Students and PLWHA were able to identify major transmission and prevention methods, and all were able to determine local testing centers.

Table I.

Responses related to program evaluation (N = 45)

Item description	Student participant	PLWHA participant	Audience	P-valuea
How is HIV transmitted?
N (%) reported
Blood	11 (100)	6 (100)	27 (96.4)	1
Sex	11 (100)	6 (100)	28 (100)	–
Mother to child	6 (54.6)	1 (16.7)	12 (42.9)	0.35
How is HIV prevented?
N (%) reported
Faithfulness	2 (18.2)	3 (50)	5 (17.95)	0.25
Abstinence	9 (81.8)	4 (66.7)	25 (89.3)	0.28
Condom	9 (81.8)	5 (83.3)	25 (89.3)	0.70
Not sharing blood contaminated instruments	6 (54.6)	2 (33.32)	16 (57.1)	0.62
Able to report testing centers N (%)	11 (100)	6 (100)	28 (100)	–
Themes N (%)
Trust and love in a relationship	6 (54.66)	1 (16.7)	17 (60.7)	0.15
Equality for PLWHA	9 (81.89)	6 (100)	21 (75)	0.57
Life after HIV and AIDS	7 (63.6)	2 (33.3)	13 (46.4)	0.42

^aMeasured using two-sided Fisher’s exact test.

Breaking barriers and depth of understanding

The second week was devoted to exploring sociocultural issues in HIV and AIDS through debates and sharing of personal stories. In reflecting on this experience, one student remarked how these discussions allowed them to explore their own underlying issues with HIV and AIDS:

‘I still think I had the stigma in me. Until I had to be with [PLWHA], socialize with them, and be with them as a family … I had never been in such close contact with a person with the virus than I did with the project. So basically for me I was breaking out the unconscious stigma that was in me …’

These discussions also allowed PLWHA to provide their own experience:

‘And even when we were living with the students, we were even able to share with the students after breaks. We could talk to some two/three students, have more discussions … to share more on HIV and AIDS’.

Empowerment

Theater of the Oppressed exercises provided an avenue for participants to explore causes and solutions to the barriers of HIV prevention. For example, in an exercise called ‘Breaking the Oppression’, participants were invited to share a story in which he or she experienced stigma or discrimination, but did not confront it. After sharing that story with the group, the individual selected other participants to act out the events as they actually happened, with the person acting as him or herself. Then, they were asked to act out the same scene, but this time the individual should confront the stigma or discrimination. After enacting both scenes, the actors and group were asked to reflect on the scenes, their differences and overall message.

After 1 year, we asked participants to discuss any changes in HIV prevention (personal empowerment), an increased desire for community leadership (relational empowerment), and/or HIV and AIDS advocacy (collective empowerment). We found that student and PLWHA participants reported this at a high frequency (students: 90.9% and PLWHA: 100%). In personal empowerment, the program allowed students to confront their own barriers to testing:

‘I think it gave me an opportunity to find myself within the broader spectrum of living risky behavior … I realized that I am very much at risk and that is why I went for VCT [voluntary counseling and testing] to know my status’.

At a greater level, students noted the relational empowerment they felt in helping others at the university explore the risks they may face in HIV and AIDS:

‘It’s kind of placed a certain kind of responsibility on me … now I cannot sit back and watch something go on when I know that this would lead to [HIV infection] …’

Another student remarked on their new role on campus:

‘I think the role I have now is to encourage people to go to VCT, so they know their status, and pick them up those who are positive, and give them support, emotional support, and realize they are not alone, we are part of them, we will not discriminate them, stigmatize them’.

The project also gave PLWHA collective confidence to serve as advocates:

‘I feel I’m part of the world, I’m someone who can tell people what HIV and AIDS is. I feel I am part of those who are in the fight against HIV and AIDS’.

Theme development

The third week focused on theme development based on their discussions. The participants made a list of lessons and then voted on main ideas. The most voted themes were:

1. Trust in a relationship and how it affects women: participants discussed how women may have an increased risk of HIV infection because they have male sexual partners who engage in risky sexual behavior, including sex workers or multiple partners.

2. Equality for PLWHA: participants noted that in their community and the university, people suspected of being HIV positive were stigmatized. They believed that PLWHA should be treated as equal members of society.

3. Life after HIV and AIDS: participants believed that students were afraid of HIV testing because of the consequences of being found positive. However, they wanted to emphasize that a positive HIV diagnosis was not necessarily fatal; rather, with proper support and care, individuals could continue to have a fulfilling life.

After 1 year of the performance, we evaluated the extent that participants reported that these three themes influenced their ideas about these topics. For ‘trust in a relationship and how it affects women’, 54.6% of student participants and 16.7% of PLWHA discussed this theme (Table I). Among student participants, several noted how trust framed the storyline of their performance:

‘We based our play on trust, which is a major problem on the campus. I call it a problem because it is the girls who are at risk … there are many students out there who are still trusting their notorious, womanizing boyfriends’.

The motivation to develop this theme stemmed from the discussions they had during the process:

‘As those people who were living with HIV, there was actually a woman who was betrayed by her husband. She was infected by her husband. Yes, she trusted this guy, she was believing this guy for some time, you see, so the shock that she had was not more or less the infection itself, it was the betrayal’.

One PLWHA explained that the group discussions helped them to understand the risk for women:

‘The most vulnerable are the women, these women go and get tested and the husbands are refusing, or sometimes running away from the family … they go to another person, marry another … then infect her again’.

For the theme of ‘Equality of PLWHA’, 75% of student participants and 100% of PLWHA noted how it shaped their ideas (Table I). Student participants described their experience with the PLWHA as:

‘Living HIV positive does not mean you are a reject in society. You are able to do anything, HIV/AIDS does not mean you are disabled, but you are just like everybody else … I realized that there is stigma and discrimination against people who are HIV positive’.

PLWHA described a sense of equality in participating in the project. For example:

‘There were some exercises that we were doing … we had to learn to like interdependence and trust. Everybody would say no man is an island, we all need each other’.

Another PLWHA noted the strong relationship formed during the workshop with the students:

‘I saw no discrimination during that project, I was even amazed when I was introduced to this group, and I saw that the people could hug me, and I didn’t even expect that’.

63.6% of students and 33.3% of PLWHA discussed the third theme of ‘life after HIV and AIDS’ (Table I). Student participants described their interaction with PLWHA during the process:

‘We had living examples, like one of the people who is HIV positive, you could see the way she carried herself … she still has that life, she can live like everyone else. The only difference is that she has HIV, so her living example gave me that strength’.

Due to this relationship and their discussions, the theme of promoting a positive life after HIV and AIDS was salient:

‘In most cases, people who are HIV positive, they lose hope. And they think it is either tomorrow, or the next sick day, they are going to die. But the people that I worked with, they had a positive life … I knew that they were not pretending cause I could see their endearing smile on their face …’

For the PLWHA, the performance served more as an opportunity to show they could be healthy even though they were HIV positive:

‘It’s important for them to know what HIV is, that there’s some people who are living with the virus … as they can see me living without any difficulties’.

Processing and rehearsal/production

By the end of the third week, the group worked with the program directors to build these themes into a performance and created a play titled ‘This is My Story’ (Fig. 1). The performance was rehearsed and produced during Weeks 4 and 5. ‘This is My Story’ was performed at the end of Week 5 at several locations, including once in the main auditorium of the Chancellor College campus. Set design was completed by the participants and program directors using local materials. Promotions took place in Weeks 4 and 5, and included free t-shirts given to students and flyers posted on campus titled ‘This is My Story, What is Yours?’. Participants were instructed to not reveal that it was a performance about HIV, or that PLWHA would be participating, in order to reduce preconceptions the audience may have about the topic. After the performance, participants remained to answer questions and interact with the audience.

Fig. 1.

Synopsis of ‘This is My Story’.

Performance

We found that 82.1% of audience members reported that they spoke to others about the performance in the past year. In evaluating theme retention, audience members reported the three main themes of ‘trust in a relationship and how it affects women’, ‘equality for PLWHA’ and ‘life after HIV and AIDS’, 60.7, 75 and 46.4%, respectively (Table I). In terms of trust, stories from the performance resonated with audience members:

‘There was this woman who got AIDS from her husband … people think that you get AIDS because you were moving around with men, but then it’s not always like that’.

The sight of PLWHA on the stage, and learning only at the end of the performance that they were positive, had a large impact:

‘It’s rare to meet people to stand in front and say they have AIDS. So seeing one was something and the way they got it that’s what touched me the most’.

At the same time, noting how the PLWHA and students worked together on the performance promoted the importance of equality for PLWHA:

‘In the play, a person was positive, but it was not something that could prevent him from associating from the organizations. It was not something that prevented him from chatting with other friends, other family members, other work members … I learned people are all the same’.

During the performance, PLWHA were active, dancing on stage and acting out scenes. The dynamic image of the PLWHA reminded the audience that being HIV positive did not mean the end of life:

‘You wouldn’t tell from the women, they looked so healthy. And nobody would think that they were HIV positive … I thought maybe when you’ve got AIDS, you’ve got this health that everyone can see that you are suffering, that you have AIDS. But I couldn’t tell from some of the actors or actresses’.

Instead, the sight of the PLWHA showed that they could live a healthy life after HIV and AIDS:

‘There are people who are managing to live these days with HIV for twenty, thirty years … they have accepted and they are living positively. I think that’s something that touched me’.

Discussion

The PACED method utilizes an arts-based approach to HIV education and prevention. By engaging the community, including PLWHA, in a process that addresses the sociocultural barriers to prevention, the goal is to generate a performance that goes beyond entertainment to reflect the challenges they face in the HIV epidemic [11]. ‘This is My Story’ adapted the PACED approach to the university setting, and we present the steps for implementation and 1-year program evaluation with participants and audience members.

As expected, knowledge was high and similar among participants and audience members. The knowledge stage of the PACED approach serves to ensure all participants have a base understanding of HIV and AIDS. At Chancellor College, students receive HIV education from a variety of sources, including mass media campaigns, student groups and coursework. In addition, students know where to find resources: a survey at Chancellor College showed that a majority of students could find condoms (66.8%) and testing services (83.3%) [26]. However, there are limitations to knowledge driving behavioral change; the Chancellor College survey also showed that 68.4% did not believe they were at risk of HIV infection and only 19% had tested [26].

It has been suggested that university HIV prevention programs that address sociocultural issues can influence student risk behavior [27]. Through a process-driven approach, the PACED method allows university students to partner with PLWHA, explore the structural barriers relevant to the university setting and create a performance that illustrates their challenges in HIV prevention. After the performance, the PACED method seeks to generate discussion about the obstacles and possible solutions in HIV prevention. In evaluating the level of discussion, we found that 82% of audience members spoke with friends and family about the performance and its major themes.

The ‘Trust’ theme illustrated a central element to the HIV epidemic in Malawi. Among young people aged 15–24 years in Malawi, the 2010 rate was 9.1% for women versus 2.1% for men [8]. Furthermore, 6.5% of young men had multiple sexual partners in the last 12 months compared to only 0.7% young women [8]. Through the PACED method, the group created a performance that portrayed the complexity of gender inequality, whether it is the wife who is infected from her husband or the female student who is pressured by a male authority figure. Theater allows participants and the audience to ‘play’ with gender norms, by imagining hierarchies and experimenting with ways to subvert it [28]. For example, the Amakhosi Theater in Zimbabwe gave a performance in a rural community that addressed how social patriarchies could take precedence over protection of a woman from HIV [28]. By portraying a female character that can confront gender structures, the ‘play’ can transcend to greater discussion in the community about hierarchies and barriers to HIV prevention.

The ‘equality’ theme was the most discussed. The image of PLWHA and drama students working together promoted an environment of equality. Also, importantly, it encouraged the PLWHA to share their stories with their community. This supports the PACED approach as an effective method to involve PLWHA while working to reduce stigma and discrimination. ‘Life after HIV and AIDS’ was most described by student participants. Through their 5 weeks, the students interacted with PLWHA and saw that they had a normal quality of life. The PACED method creates an opportunity for this valuable relationship, which goes beyond the creation of a performance to provide role models that show that one can have the same quality of life regardless of HIV status.

Taken together, these three themes reflect the most important aspects of the HIV epidemic to this community. It highlights the increased risk of HIV infection among female students. It underscores the need for equal relationships with PLWHA, and encourages students to know their HIV status. After 1 year, participants and audience members continue to note these themes, suggesting that ‘This is My Story’ was able to resonate with this population and have a sustained impact on attitudes around HIV and AIDS.

After ‘This is My Story’, every PLWHA and 91% of student participants noted a sense of leadership and a larger role in preventing and educating about HIV and AIDS. This represents their interpretation of empowerment and ways to motivate social change. In universities, there is a need to provide peer leaders with resources and training to take an active role in HIV prevention [1]. To achieve this, the PACED approach integrates ideas from Theater for Development (TFD), a form of theater that seeks to mobilize communities and motivate social change [29]. Theater generates a discourse on the factors that shape barriers to health, while allowing the community to develop their own strategies to confront these challenges [29, 30]. For example, an initiative in Tanzania was created that engaged adolescents in discussion and eventual performance around biomedical and social issues in HIV. A cluster-randomized evaluation of this program found that young men and women expressed greater self-efficacy, whereas adults in the community imparted greater collective efficacy to the young people to address issues in HIV and AIDS [31]. A program in Uganda had young women create video drama to explore gender relations and sexual violence and resulted in greater confidence and perceptions of empowerment [32]. Thus, TFD approaches such as those used in the PACED approach can serve as a tool for schools to create student advocates, while including PLWHA in other outreach activities.

There were several limitations to this program and the evaluation. In recruiting PLWHA, HIV positive students may have been more relatable to the other students, although the mentorship of older PLWHA also had its advantages. Moreover, the program could have been further developed to contain other components to strengthen its impact on HIV and AIDS prevention and education, such as informational packets for audience members, condom distribution and testing services after the performance. For the evaluation, the relatively small sample limited examination of the full impact of the performance. In addition, demographic information and pre- and post-behavioral surveys would have allowed evaluation of changes in testing and risk behavior after the performance. Also, there may be recall bias as participants are more likely to remember elements from the performance. Finally, with arts-based interventions that are dependent on the specific participants and audience involved, there are limitations in generalizing the outcomes to other settings.

Conclusion

‘This is My Story’ adapted the PACED method to the university setting by connecting drama students from the University of Malawi, Chancellor College and PLWHA to develop a performance that reflected 5 weeks of intense engagement with the issues surrounding HIV and AIDS. After 1 year, we have shown that major themes from the project related to trust and its effects on women, equality for PLWHA and life after HIV and AIDS, continue to be retained by participants and the audience and generated greater discussion throughout the campus community. In addition, both PLWHA and the student participants had a greater sense of empowerment and desire to be leaders in their community against HIV and AIDS. Ultimately, a multidisciplinary approach that includes tools such as the PACED method will support an environment where students can be creative, self-advocates in their own HIV prevention.

Funding

The Nicholas Foundation; Infectious Diseases Society of America Medical Scholarship; UCLA AIDS Institute, and the UCLA Center for AIDS Research (AI28697).

Conflict of interest statement

None declared.