A Pilot Test of Game Changers, a Social Network Intervention to Empower People with HIV to be Prevention Advocates in Uganda

Abstract

We conducted a pilot randomized controlled trial of Game Changers, a 6-session group intervention that empowers people with HIV to be HIV prevention advocates in their social networks. Ninety-nine people with HIV (51 intervention, 48 wait-list control) and 58 of their social network members (alters) completed baseline and 5- and 8-month post-baseline assessments. Results indicated high acceptability, demonstrated by participants’ and facilitators’ positive attitudes qualitatively and favorable ratings of intervention sessions quantitatively, and high feasibility (76% attended all intervention sessions). Intention-to-treat analyses indicated significantly increased HIV prevention advocacy among HIV-positive participants and alters [b (SE) = 0.4 (0.2), p = .017; b (SE) = 0.4 (0.2, p = .035]; reduced internalized HIV stigma [b (SE) = −0.3 (0.1), p = .012], increased HIV-serostatus disclosure [b (SE) = 0.1 (0.1), p = .051], and increased social network density among HIV-positive participants [b (SE) = 0.1 (0.03), p = .004]; and marginally reduced condomless sex among alters [OR (95% CI) = 0.3 (0.1–1.2), p = .08]. Positioning people with HIV as central to prevention has the potential to reduce stigma and improve prevention outcomes throughout social networks.

INTRODUCTION

In Uganda, about 1.4 million people are living with HIV, and HIV prevalence is estimated to be 6.2% among those aged 15–64 [1–3]. In terms of progress toward the UNAIDS 90–90-90 benchmarks, 74% of people with HIV are estimated to know their serostatus, 72% of people with HIV are on antiretroviral treatment (ART), and 64% of all people with HIV are virally suppressed [3]. Only 56% of men and 42% of women used a condom at last sex with a casual partner [4], and less than 10,000 people are estimated to be on pre-exposure prophylaxis (PrEP) for HIV prevention through demonstration and research studies [5]. Political and cultural barriers, including limited government HIV funding and HIV stigma [6], have impeded HIV prevention and led to projections of rapid increases in HIV incidence [3].

HIV prevention advocacy, in which peers initiate conversations about HIV and provide HIV prevention information to people in their social networks, may be a promising, low-cost approach for addressing the epidemic. Prior quantitative and qualitative studies in Uganda have found that many people with HIV are already engaging in HIV prevention advocacy, and that prevention advocacy is associated with lower internalized stigma and more serostatus disclosure among people with HIV [7–10]. For instance, in a sample of 602 people entering HIV care in Uganda [8], 81% encouraged others to get HIV tested, 79% told people to use condoms when having sex, and 61% discussed HIV in general with friends and family; engagement in prevention advocacy was associated with lower internalized stigma and more serostatus disclosure to friends. In a qualitative study [7], all but one of 40 participants reported having encouraged others to engage in protective behaviors, and such advocacy occurred across the network, to family, friends, partners, and children—with people of varying HIV serostatus. However, much advocacy involved only general cautionary messages about HIV, rather than advocating specific protective behaviors, highlighting the need and potential for interventions to improve advocacy quality.

We developed and conducted a pilot test of Game Changers, a 6-session group-based intervention that aims to empower people with HIV to be agents for HIV prevention by initiating conversations about HIV with social network members, i.e., people in their social circle such as family members, friends, and acquaintances, who are referred to as “alters” in social network research. In contrast to other peer prevention interventions, which concentrate on specific venues, sub-populations, or high-risk communities, and/or train prevention advocates perceived to be popular [11–17], Game Changers empowers people with HIV to act as change agents in their overall social network. Game Changers draws on social diffusion theory [18] and principles of social influence [19] to posit that behavior change can be initiated by a few and diffused to others through social norm change, harnessing the power of people in the network whom alters see as supportive and credible [12, 20–23] to deliver an intervention to alters across networks [24].

Figure I shows the conceptual model of the Game Changers intervention, which is based on recommended approaches to network-based and prevention interventions [25, 26]. Game Changers acts through individual- and dyadic-level mediators to change behaviors of both people with HIV and their alters. Game Changers is hypothesized to lead to greater prevention advocacy between people with HIV and their alters, which results in increased HIV testing and condom use among alters, and ultimately, stronger and more supportive (and less stigmatizing) social networks and communities.

Figure I.

Conceptual Model of Game Changers Intervention

Underlying the model is the assumption that effective advocacy requires coping with internalized HIV stigma and self-acceptance. Reduced internalized stigma is linked to increased HIV disclosure [27], which is essential to encouraging others to engage in prevention behaviors. Disclosure enables a person to share their experiences of living with HIV, which raises the credibility of their advocacy, as they have experienced the consequences of risk behavior and the benefits of ART. Some may assume or speculate that a person who advocates for HIV prevention is HIV-positive, so selection of targets for advocacy calls for considering whether the alter knows the advocate’s serostatus or whether the advocate is comfortable disclosing their serostatus.

The consequence theory of disclosure [28] posits that disclosure decisions involve weighing both risks and benefits. Among the benefits of disclosure is increased social support, which is associated with better health [29–32]. Although research in sub-Saharan Africa shows that most responses to HIV disclosure are supportive [33–35], there is a risk of negative responses such as rejection and abuse, particularly for women [28]. Game Changers draws on existing HIV disclosure interventions [36] using role plays (e.g., playing a person in a skit who discloses, or is disclosed to, in intervention sessions) and sharing of similar experiences about stigma and disclosure to help participants develop disclosure decision-making skills and awareness of when to, and when not to, disclose and do prevention advocacy.

Game Changers uses adapted HIV prevention advocacy strategies from prior effective interventions (e.g., Mpowerment and Popular Opinion Leader interventions) [12, 13, 37, 38]. Strategies include looking for “teaching moments” (i.e., opportunities when alters seem more open to a message of behavior change, such as after a radio advertisement for an HIV testing event), role-playing how to initiate conversations about HIV, and learning effective communication skills (e.g., reflective listening). By increasing open, honest, and supportive conversations about HIV in social networks, Game Changers is hypothesized to reduce HIV stigma.

In Phase 1 of the present research, we conducted formative research (focus groups) with people with HIV and their alters to explore anticipated acceptability of the intervention. Based on implementation science research recommendations, we defined anticipated acceptability to mean how potential participants, who were not in the intervention pilot, reacted cognitively and emotionally to a description of the intervention and whether they considered the intervention to be appropriate [39, 40]. In Phase 2, we conducted a mixed-methods pilot randomized controlled trial (RCT) in which we assessed feasibility through retention in intervention sessions and recruitment and retention in follow-up assessments, following previously established methods [39]. We recruited a small sample of alters from the social networks of people with HIV to assess the feasibility of alter recruitment and tracking. We conducted post-intervention focus groups with people with HIV and obtained feedback from intervention facilitators to assess intervention acceptability. We tested preliminary effects with the goal of obtaining effects sizes for a larger trial. We hypothesized that Game Changers would increase discussions around HIV prevention (i.e., prevention advocacy) in the network, reduce internalized HIV stigma, and increase serostatus disclosure among HIV-positive participants, and increase HIV prevention behaviors (i.e., HIV testing and condom use) among alters.

METHODS: FORMATIVE RESEARCH (PHASE 1)

Study Setting and Community Partnerships

All study activities for the formative research and the pilot described below were conducted in Kampala, Uganda at the Infectious Diseases Institute (IDI), which provides outpatient care to ~8,000 active HIV-positive patients. HIV prevalence is estimated to be 6.9% in Kampala. The team partnered with two community stakeholder groups: the community advisory board (CAB) of IDI and the National Forum of People Living with HIV/AIDS Networks in Uganda (NAFOPHANU), which have about 20 members each from diverse community groups (e.g., clergy, activists, youth leaders, expert patients).

The team met with the CAB and NAFOPHANU for several-hour meetings 1–2 times per year for three years, in order to obtain input at critical study points: on interpretation of the formative research, intervention development (e.g., ideas about session content and structure), interpretation of the pilot results, and suggestions for next steps for intervention testing and dissemination. Furthermore, the intervention facilitators were NAFOPHANU members and thus were able to provide updates to other NAFOPHANU members throughout the study.

Participants and Procedures

Eight focus groups with 47 participants (aged 18 and older) were conducted (24 women, 23 men): 6 focus groups of people with HIV (n = 31) and 2 focus groups of alters (n = 16) to whom they had disclosed their serostatus. Study interviewers approached patients in the waiting area at IDI’s HIV clinic and offered study participation. Following the informed consent process, participants were asked to call up to three alters to describe the study in the presence of the interviewer; if alters were interested, the interviewer told them when the next alter focus group was being conducted.

During the focus groups, participants were asked about conversations they had about HIV in their social network—whom they spoke with, what topics were discussed, and how conversations were initiated—to elicit examples of prevention advocacy that could be used for intervention content. To assess anticipated intervention acceptability, participants were provided with a description of the planned intervention and asked for feedback.

Similar focus group guides were used with patients and alters, with minor differences in the questions about the planned intervention. Specifically, all participants were asked about conversations about HIV in their social networks. However, patients were asked more in-depth questions about the planned intervention (e.g., about group structure and content), whereas alters were asked for their general feedback about the planned intervention.

Informed consent was obtained from all individual participants included in the study. All study procedures were approved by the institutional review boards of the RAND Corporation and Makerere University, as well as the Ugandan National Council for Science and Technology.

Qualitative Analysis

Focus group discussions were translated from Luganda and transcribed in English. Transcripts were analyzed with a directed content analysis approach, in which analysis begins with prior relevant research as a guide for developing initial themes but provides flexibility for additional themes to emerge [41]. Data were managed with Dedoose (www.dedoose.com). Two investigators independently reviewed all transcripts to create an initial coding scheme and created a codebook that listed each theme and included descriptions, inclusion/exclusion criteria, and example quotes. Prior to coding all of the transcripts, two raters independently double-coded 27 excerpts, representing 7% of 407 total excerpts drawn from six of the eight transcripts to ensure they could consistently identify similar themes, discussing any inconsistencies and revising and clarifying the codebook as needed. Good coder concordance ((κ ≥.76) was reached between coders across themes, which included: HIV-related conversation topics; type of person approached; conversation starters used to discuss HIV; and intervention acceptability.

RESULTS: FORMATIVE RESEARCH (PHASE 1)

Table I shows themes, sample quotes, and application of each theme to intervention development.

Table I.

Focus Group Themes and Quotes regarding Content and Anticipated Acceptability of Game Changers

Theme	Example Quotes	Application to Intervention
HIV-related Conversation Topics	HIV-positive man: “I remind them to use condoms and also advise those living with HIV not to spread it to others.” HIV-positive woman: “There is my friend …I found her bedridden when I was called to pay her a visit…I told her to go and she gets a blood test, we went with her sister and she was told that she was HIV positive. I told her that she had to start the medication.” Alter: “[I] encourage those guys to go [get tested]…Whenever you know your status, it gives you courage to know what is next.”	Integrated different types of conversation topics in examples and role plays, with an emphasis on how to start conversations about condom use, HIV testing, and antiretroviral treatment
Type of Person Approached	HIV-positive man: “I tell [youth] that you people are still young but… the speed at which you are moving at is too fast…the first step is to go for a blood check-up instead of going out with other women.” HIV-positive woman: “I counsel most especially my friends, those I am always with, who go through this pain of HIV. I counsel them in different ways and teach them everything about the disease.” Alter: “I questioned [my aunt], ‘Aunt what’s wrong, as you are frequently falling sick. Why don’t we go to the facility and you get a blood test because you may die?’ She was tested and she was found to be positive…and now as I talk it is ten years later. And she is looking healthy. And whenever she sees me, she calls me the savior because she says I saved her life. It gave me courage if someone takes your advice.”	Integrated examples and role plays of different types of people (e.g., youth, friends, family) to approach for prevention advocacy
Conversation Starters Used to Discuss HIV	HIV-positive man: “Most people converse about women always and that is what takes up their minds, [so] you can link up to the HIV issue in the due course of the conversation.” HIV-positive woman: “A person was sick and thought that she was being bewitched by the co-wife…I [said], ‘I can take you to the hospital for a blood test so that you stop saying that you are being bewitched.’ ” Alter: “When I was infected, I called all [of my children] and my wives…I told them that I am HIV-positive and I asked my wives to go for a blood test…And I remained counseling the children to use condoms…so that they don’t face the same problem that I faced.”	Integrated examples and role plays of different conversation starters that individuals were already using (e.g., approaching someone who is sick; starting a conversation with a man who is discussing women he is dating)
Intervention Acceptability: General Attitudes	HIV-positive man: “…it’s really difficult to talk to [others] because you are scared…this program will help us to get techniques on how to approach the people.” HIV-positive woman: “This program will be very good because more people will come to know about their status, and it will help to strengthen the sick people, so that they can go for medication…It will continue to strengthen them if we go close to them and counsel them, and also explain to him or her properly.” Alter: “People have a way they perceive HIV-positive people, they stigmatize, neglect them…if people know that you are HIV-positive, they will not eat your food…I would like to get a chance to talk to the HIV-positive and -negative people and show them that positive people are also humans.”	Developed Game Changers program focused on training people with HIV on HIV prevention advocacy
Intervention Acceptability: Gender Mix of Groups	HIV-positive man: “If you combine us together and we advise each other, it will help us in a way that women will know men’s problems and also men will know women’s problems—but if we are separate, we shall not know women’s problems, and they will also not know ours.” HIV-positive woman: “Based on my religion, it requires us women to study separately—but since this issue concerns health, we shall have to be mixed with the men.” Alter: “The idea of being with men, ladies, and children is a good idea, because for this issue all of the three categories are concerned, so let us be together as a group…and [after] 30 minutes we separate because a child might have his opinion, but he is seeing his mother or dad, he will fear to talk, even the ladies, if I see a man seated next to me, I will keep quiet.”	Given mixed opinions, conducted two same-gender and two mixed-gender groups for the pilot

Descriptions of HIV Prevention Advocacy Discussions

Participants reported talking about different HIV-related topics (e.g., condom use, HIV testing, ART use). People with HIV and alters commonly discussed the importance of using condoms with social network members, and framed HIV testing as empowering. Participants mentioned different people with whom they spoke about HIV (e.g., friends, family members, spouses/partners, youth, work colleagues). While both men and women spoke to family members about HIV, women more commonly spoke to their friends and men more regularly spoke to youth and work colleagues.

Participants overcame barriers to discussing HIV with others by using teaching moments such as cues from the existing conversation or their environment. Men sometimes initiated discussions about HIV if they were part of a group of men talking about women sexually, whereas women more often initiated conversations about HIV when someone they knew showed symptoms of illness. Disclosure of participants’ own HIV serostatus also was raised as a way to discuss HIV.

Anticipated Acceptability

The focus group discussions showed high anticipated intervention acceptability: both people with HIV and social network members were enthusiastic about the program. Participants liked that the program would help them build skills, as they were motivated to have conversations about HIV but did not know how to initiate such conversations, and also felt that the program could help to reduce HIV stigma in their communities. Participants referenced several preferred characteristics of intervention facilitators, including being HIV-positive, having experience as a counselor with a strong ability to communicate clearly and create a supportive environment, and having HIV-related medical knowledge.

In terms of intervention content, participants suggested including information on HIV stigma, routes of HIV transmission and prevention, and ART use. Regarding intervention structure, participants recommended that sessions last two hours, and varied between suggesting weekly or less frequent (e.g., monthly) sessions. Most participants thought men and women should learn prevention advocacy together to provide practice with everyone in their networks. However, some participants felt women might be uncomfortable sharing their experiences in mixed-gender groups.

Intervention Development

To facilitate discussions around intervention development, the team presented the proposed intervention and formative research results to key stakeholders, including local researchers, the CAB, and NAFOPHANU. Focus group narratives were used to develop examples and role plays for the intervention. For example, several people mentioned that friends and family members had misconceptions about HIV, such as that their illness was a result of witchcraft. These examples were integrated into the intervention session on how to overcome HIV myths that may be encountered when doing prevention advocacy.

The team engaged HIV-positive intervention facilitators who had HIV education and group facilitation experience. In addition, because participants had mixed opinions on group structure and gender composition, the team explored the acceptability and feasibility of different options in the pilot. Intervention groups were held every other week for the pilot RCT, but some participants forgot key points or reasons for the take-home activities in between sessions. Thus, the intervention was offered to the wait-list control group in weekly sessions. In addition, we conducted both same- and mixed-gender groups to determine whether one type was more acceptable than the other.

METHODS: INTERVENTION PILOT (PHASE 2)

Intervention Description

The intervention consisted of six sessions (Table II) that used experience-sharing to build support and solidarity; group problem solving and role plays to build skills and self-efficacy; personal goal-setting; and take-home activities to reinforce the practice of skills and generate personal experiences for discussion in the sessions. Due to generally low education levels among participants (i.e., most participants had only completed primary education), the take-home activities did not require writing. Participants instead engaged in an activity (e.g., prevention advocacy, which required talking to one of their alters) and reported back to the group in the following session.

Table II.

Game Changers Intervention Content

Topic	Content	Take-Home Activity
1: Introduction and Stigma Reduction	• Introduce goals; set rules for confidentiality • Introduce and define self-stigma, prevention advocacy, and disclosure decision-making • Use discussion of stigma experiences and strategies for coping with stigma to model adaptive coping and promote self-compassion	Practicing Self-Compassion: Focus on a difficult experience; acknowledge and accept one’s own suffering; offer oneself compassion
2: Empathy, Self-Compassion, and HIVDisclosure	• Define empathy and self-compassion, with the aid of role plays • Discuss healthy disclosure decision making; use sharing of experiences to highlight potential risks and benefits of disclosure • Convey importance of establishing a basis of empathy and self-compassion, and comfort with disclosure and discussing HIV, prior to conducting prevention advocacy	Set Personal Goals for Disclosure: Assess pros and cons of disclosure to at least one social network member, and practice initiating disclosure conversations
3: Positive Living and Using the Power of Social Networks for Change	• Share experiences with disclosure and coping since last session; provide reinforcement and problem solving of challenges • Discuss how credible advocacy for HIV prevention requires being able to model behaviors in one’s own life (positive living) • Set personal goals related to positive living (e.g., adherence) • Introduce the concept of social networks as key to doing advocacy • Show participants how to map their own social network and identify alters to whom they have disclosed and discussed prevention, and to whom they would like to do so • Define the concept of strategically positioned alters and discuss where strategically positioned alters are in participants’ network maps • Use network maps and strategically positioned alters to highlight how participants can play a key role in their community through advocacy	Set Personal Goals for Prevention Advocacy: Assess pros and cons of doing prevention advocacy with at least one alter in network map, and practice initiating advocacy conversations
4: HIV Facts and Myths, and Prevention Advocacy I	• Share experiences with disclosure and advocacy since last session; provide reinforcement and problem solve challenges • Discuss how advocacy protects others, and how people with HIV are credible prevention messengers; validate fears and anxiety around advocacy • Introduce strategies for effective advocacy (teaching moments, open-ended questions, rephrasing); use role plays to build skills	Practice Prevention Advocacy: Use network map to select alters to target for disclosure and advocacy, including Strategically positioned alters
5: Prevention Advocacy II	• Share experiences with disclosure and advocacy since last session; provide reinforcement and problem solve challenges • Discuss how to support alters after they have been tested for HIV • Use role plays to practice and model effective advocacy	Same as Session 4
6: Wrap Up & Review	• Share experiences with disclosure and advocacy since last session; provide reinforcement and problem solve challenges • Use role plays to practice and model challenging scenarios • Share experiences with program; affirm commitment toward goals	N/A

Session 1 used compassion-focused therapy principles [42–45] and cognitive behavior therapy strategies from a prior intervention [46], including mindfulness and compassionate imagery, to break down internalized stigma. Specifically, facilitators role-played skits illustrating how internalized stigma can affect the health of a person with HIV, and how non-judgmental self-acceptance can help to overcome internalized stigma. Participants discussed, and were made aware of, how internalized stigma affects their own health and health behaviors, and problem-solved how to get social support when they feel and experience stigma. As a take-home activity, participants were asked to practice self-compassion by acknowledging and accepting their suffering, and offering themselves compassion.

Session 2 emphasized the need for self-compassion and empathy when making disclosure decisions and focused on building HIV disclosure decision-making skills (weighing potential risks and benefits; how to initiate and navigate disclosure conversations). Session 3 discussed building motivation for positive living so that advocates’ own behavior (e.g., safer sex, adherence) was consistent with the behavior they encouraged in others.

In the main activity for Session 3, participants mapped their social networks [47] using a handout with a “bulls-eye” drawing and 20 small sticky notes. They listed 20 alter initials on the sticky notes, then marked sticky notes of alters to whom they disclosed and alters with whom they discussed HIV. Participants placed the sticky notes on the bulls-eye, with sticky notes closer to the center representing alters who were closer to the participant, and sticky notes clustered together (and encircled) to represent sub-groups (e.g., immediate family members). The completed bulls-eye diagrams were used as a tool for advocacy and disclosure decision-making skills training. Participants were shown how to identify strategic alters—including popular alters (with many connections to other alters) and bridging alters (who connect two distinct groups of alters)—whose positions facilitate efficient transfer of norms and information in the network [48].

In Session 4, participants received basic HIV information with which to address common HIV myths when doing advocacy. In addition, Sessions 4 and 5 provided participants with skills and support for engaging in prevention advocacy. Specifically, participants were told, “Prevention advocacy means talking to other people, like your friends and family members, about HIV. That means encouraging them to protect themselves from HIV and get tested, have safer sex, and get antiretroviral treatment if they are HIV-positive.” Participants engaged in role plays with different hypothetical social network members that varied by age and gender, using communication skills incorporated from prior intervention research [37]. Session 6 provided a review of prevention advocacy skills and aimed to inspire a commitment to ongoing advocacy.

Study Design and Procedures

The study design was a pilot individually randomized group-treatment trial using a partially clustered design in which intervention participants were clustered into groups but control participants were not [49]. Interviewers recruited 99 people with HIV (index participants; 51 intervention, 48 control) and 58 of their alters (36 intervention, 22 control) across four intervention-control cohorts. Each index participant was asked to recruit 1–3 alters to whom they had disclosed, and a total of 214 alters were referred; due to the limited resources of the study, which was primarily designed to assess feasibility and acceptability, and not efficacy, we did not contact and assess all alters for eligibility. We prioritized recruiting alters who were linked to intervention participants, in order to examine the feasibility of asking intervention participants to do prevention advocacy with alters.

A blocked 1:1 randomization design with stratification by gender (with randomly alternating blocks of 2, 4, and 6 to prevent anticipation of condition) was used to ensure balance across arms. The first two intervention groups were same-gender and third and fourth were mixed-gender (with approximately equal numbers of men and women per group). The fifth group, which was offered to all wait-list control participants, was mixed-gender.

Participants

Interviewers recruited patients in the waiting area at IDI’s HIV clinic. Eligibility for people with HIV (index participants) included being (1) ≥18 years-old; (2) in care for >1 year (to increase the likelihood that they were medically stable); and (3) having disclosed to at least one person (and thus more likely to be ready to engage in advocacy). Eligibility criteria for alters included being (1) ≥18 years-old; (2) referred by an index participant; and (3) knowing the index participant’s serostatus. Table III shows the socio-demographic characteristics of index participants and alters.

Table III.

Baseline Participant Characteristics Overall and by Intervention Group [98 index participants (51 intervention, 47 control), 57 alters (36 intervention, 21 control)]

Characteristic	Overall M (SD) or %	Intervention M (SD) or %	Control M (SD) or %	p-value
Age (index)	35.4 (10.5)	33.8 (10.7)	37.1 (10.0)	0.13
Age (alter)	38.6 (10.7)	37.9 (9.7)	39.8 (12.3)	0.54
Years since HIV Diagnosis (index)	9.51 (4.6)	10.13 (4.6)	8.85 (4.7)	0.18
Female (index)	53.1%	52.9%	53.2%	1.00
Female (alter)	61.4%	63.9%	57.1%	0.78
Less than Secondary Education (index)	40.8%	43.1%	38.3%	0.68
Less than Secondary Education (alter)	35.1%	19.4%	61.9%	0.002
Live Alone (index)	23.5%	23.5%	23.4%	1.00
Live Alone (alter)	14.0%	13.9%	14.3%	1.00
Number of Living Children (index)	2.8 (2.5)	2.5 (2.0)	3.3 (3.0)	0.13
Number of Living Children (alter)	3.2 (2.3)	3.0 (2.2)	3.6 (2.6)	0.37
High Religious Attendance (at least weekly) (index)	83.7%	88.2%	78.7%	0.28
High Religious Attendance (alter)	80.7%	88.9%	66.7%	0.08
High Monthly Expenditure (>100 Shillings) (index)	69.4%	64.7%	74.5%	0.38
High Monthly Expenditure (alter)	91.2%	94.4%	85.7%	0.35

Notes: Index = HIV-positive index participant. P-values are from Fisher’s Exact tests for dichotomous characteristics and t-tests for continuous characteristics, for the difference between the intervention and control groups.

Assessment

Both index participants and alters completed surveys; index participants also completed social network assessments. All assessments were administered in Luganda on laptops using Egoweb 2.0 [50], open source social network and survey data collection and analysis software. All participants were interviewed at baseline and 5- and 8-months post-baseline. Two months were needed for recruiting and interviewing all intervention and control group members for the baseline assessment prior to the 6-session intervention, which occurred about 6 weeks after baseline and lasted for 3 months (with sessions conducted every other week for 12 weeks). Thus, the 5-month follow-up occurred immediately after the last group session. Participants received 15,000 Ugandan Shillings (about $4) as compensation for time per assessment and a transportation incentive of 15,000 Ugandan Shillings for each intervention session.

Survey

Among index participants and alters, prevention advocacy was assessed with a scale developed for the pilot, asking how much participants discussed eight different topics (e.g., HIV testing, condom use) with people they know in the past 3 months, from 1, not at all to 5, very much; the average across the eight items was calculated (α = .87 index participants; α = .90 alters). Among index participants, we measured internalized HIV stigma using the Internalized AIDS-Related Stigma Scale (α = .69) [51] and anticipated stigma with a single item, “If people knew I was HIV+, they would stop doing business with me (would not sell to or buy from me).” Disclosure concerns were assessed with the items, “I feel certain that I can tell my sex partner that I have HIV” and “I feel certain that I can tell other people that I have HIV” (both reverse scored; α = .62). The anticipated stigma and disclosure concerns items used a 1 to 5 scale (disagree strongly to agree strongly). Index participants also were asked if they had disclosed their HIV-serostatus to their main partner or spouse.

Alters were asked whether they were tested for HIV and, if so, the date and results of their most recent test [52]; we derived a variable representing whether alters of negative or unknown serostatus were tested during the post-intervention follow-up period. Alters were also asked how many times they had sexual intercourse with their main partner or spouse in the last month and the number of those times that they used a condom; we derived a variable representing any condomless sex with a main partner or spouse in the last month.

All participants were asked socio-demographic and medical information as potential covariates (age, sex, education, work status, household expenditures, relationship status, and HIV diagnosis date if applicable).

Social Network Assessment

For index participants, we conducted personal, egocentric network interviews to assess the network of ties surrounding them, the range of alters with whom they interact, and their understanding of connections among alters [53–56]. Participants were asked to list names of 20 individuals with whom they were in communication in the past 3 months (e.g., in-person, phone, text), starting with those most important to them. Research has demonstrated that 20 alters reliably captures variability for most network characteristics [57]. Most participants (three-quarters) were able to list 20 alters, and 88.8% of participants listed 17–20 alters [M = 19.1 (1.9)]; intervention and control participants did not differ on network size at baseline [M (SD) = 19.4 (1.5) and 18.8 (2.3), respectively; t (96) = 1.5, p = .15].

To assess network structure, participants indicated whether they thought each unique pair of alters knew each other and how often they interacted. Based on this information, we used Egoweb 2.0 [50] to derive network density, a measure of network connectedness operationalized as the proportion of ties reported relative to the total number of possible ties on a scale from 0–100%, and the maximum degree value, a measure of how well-connected the most popular alter is, operationalized as the highest number of connections that any alter has to all other alters (on a scale of 0 to 19 possible alter connections in a network with 20 alters) [58]. Participants also reported if they disclosed their HIV-serostatus to each alter.

Social support was measured using items from the Medical Outcomes Survey Social Support Assessment [59] asking whether each alter was likely to provide the following types of support, on the scale 0 (not likely), 1 (somewhat likely), and 2 (very likely): accompany you to the doctor if you needed it; show you love and affection; give you good advice about a crisis; and love and make you feel wanted. The mean of the social support items for each alter, across alters, was derived as an overall alter social support measure. We also derived network composition indicators (percentage of alters disclosed to, average social support rating across alters).

At each follow-up, participants were asked the same alter elicitation questions and were then shown a list of alters from the prior assessment, allowing them to match alters named at follow-up against those previously included. These methods allowed us to examine whether the intervention was associated with changes in network membership.

Post-Intervention Focus Groups and Post-Session Feedback

Intervention acceptability, the extent to which people delivering or receiving an intervention consider it to be appropriate [40], was assessed via participant post-session evaluation forms after each session and focus groups immediately after the final intervention session for each group (one for each of the four intervention groups and one for the wait-list control group). Post-session evaluation forms asked, “Overall, how much did you like the workshop today, on a scale of 1 to 5?” from 1 (did not like at all), to 5 (liked very much). The focus group questions elicited general attitudes about the program, and attitudes about program content (e.g., on prevention advocacy), program structure (e.g., number and timing of sessions), and the facilitators. Using standard qualitative analysis methods [60, 61], two coders independently read all responses to develop an initial list categorizing positive and negative feedback overall and for each aspect of the intervention, from which they developed a codebook. Coder consistency was achieved on one transcript (κ = .75) [62, 63], after which each coder each coded two different transcripts in Dedoose.

Facilitators, Supervision, and Fidelity Monitoring

Three bilingual (Luganda, English) peer counselors (2 men, 1 woman) facilitated the groups together, after receiving a 5-day training on intervention manual content and group facilitation skills (e.g., building rapport, active listening, managing dominating and shy participants, and dealing with group conflict), including mock-implementation of core exercises. A Ugandan research assistant and/or Co-Investigator observed the administration of each session and provided feedback and further training as needed. The research assistant also recorded the number of participants in each session and reasons for any participant missing the sessions. To monitor implementation fidelity, the study team observers rated each session. Facilitators also completed ratings after each session to record whether or not the key exercises were adequately completed on a scale of 1 (not at all), 2 (somewhat), and 3 (completely). These ratings provided a basis for the Ugandan Co-Investigator’s supervision sessions with the facilitators. Across sessions and observers, high fidelity to intervention content was observed: 98.1% of 1,360 observer ratings were 3, indicating that most content was covered completely [M (SD) = 2.98 (0.16)]. Across a subset of 511 session content segments rated by more than one observer, observers agreed on ratings 98.5% of the time.

Statistical Analysis

We calculated descriptive statistics on all variables and compared the intervention and control groups at baseline to confirm comparability between groups. We created a longitudinal dataset in which each individual could contribute two records, one for each non-missing response at either of the two follow-up surveys. Using an intention-to-treat approach, intervention efficacy was tested with a series of hierarchical linear and logistic repeated-measures regressions in which the response may have come from either follow-up, and the predictors were an indicator for study arm, the baseline value of the outcome, the follow-up time-point, and covariates. Standard errors were adjusted for clustering at the individual level. (Although the intervention was administered to groups of individuals, clustering was only necessary for the primary sampling unit, the individual, per ultimate clustering methods [64].) In follow-up exploratory analyses, we conducted regressions for each follow-up time-point separately, using an indicator for study arm, the baseline value of the outcome, and covariates. For all regressions, the covariates consisted of socio-demographic variables (for index participant outcomes: living alone and high household expenditures; for alter outcomes: low education, defined as less than secondary education) that were associated with any of the index participant or alter outcomes at an alpha level of greater than .05.

RESULTS: PILOT RCT (PHASE 2)

Feasibility

We found high levels of retention in the assessments among index participants and alters, and in the intervention sessions among index participants. As shown in Figure II, 117 people with HIV were assessed for eligibility; 1 was ineligible and 17 declined. Of the 99 randomized, 1 control participant was withdrawn because she was exposed to the intervention after randomization (she showed up to an intervention session because she was invited by a friend). Of the 98 remaining participants (51 intervention, 47 control), only one participant (a control participant) did not provide any follow-up data due to moving away from the study area. Four participants who provided follow-up data at 5-months post-baseline did not provide follow-up data at 8-months post-baseline (2 intervention, 2 control). Thus, the retention rate for any follow-up data was 99%, and the retention rate at last follow-up was 95%.

Figure II.

CONSORT Flow Diagram for Index Participants (People with HIV)

For intervention participants specifically, retention was high in intervention sessions: Of the 51 participants randomized, 31(61%) received all 6 intervention sessions, 7 (14%) received 5 intervention sessions, 2 (4%) received 4 intervention sessions, 2 (4%) received 2 intervention sessions, and 9 (18%) received 0 intervention sessions; on average, 76% attended each session across intervention cohorts. As noted in Figure II, reasons for missed sessions were unrelated to the intervention.

Figure III shows the flow of alters through the study. A total of 214 alters were referred by 89 index participants (91%). Of the 214, we attempted to contact only 135 due to staffing and funding constraints. Of those 135 alters, 17 (13%) were already enrolled (15 as index participants, 2 as alters) and thus were ineligible, and 1 was withdrawn because the participant who referred her was exposed to an intervention session (as noted above). Of the remaining 117, 34 (25%) could not be reached, and 26 (19%) declined. Thus, 57 alters (49%) participated (36 referred by 31 intervention participants, 21 referred by 15 control participants).

Figure III.

CONSORT Flow Diagram for Social Network Members (Alters) of Index Participants

Acceptability

Post-intervention focus groups with intervention participants and discussions with intervention facilitators indicated high acceptability, evidenced in very high ratings quantitatively and very high enthusiasm for the program qualitatively. On individual session feedback forms, on a scale of 1 (did not like at all), to 5 (liked very much), average ratings were 4.7 (SD = 0.5), across all sessions and all five intervention groups.

In the focus groups, participants most often highlighted the skills they learned regarding disclosure of their HIV-serostatus to partners and family members. Participants reported they increased their disclosure and did prevention advocacy in their networks as a result of the skills that they learned. One participant said, “I have learned so many things from this training. One [thing that] I have learned [is] to save other people’s lives. I have also learned to live a life where I am not that miserable for being HIV-positive. I also learned how to help someone who needs help to access medical care.” Regarding disclosure, another said, “This training has given me the confidence to face someone and disclose to them that I am HIV-positive and advise them to go for testing, and if found to be positive, I encourage them to start on medication immediately. Personally, I used to fear, and I would even hide the [medication] but now I can take all of my drugs openly, without any fear. This training has helped me to show that I am not any different from the other people who are HIV-negative.” Regarding prevention advocacy, another participant said, “I was able to talk to my younger sister because she had told me that she has a boyfriend…One time we were watching TV and there was a program and I used the teaching moments. There were some couples…so I asked her if she knows anything about her guy…I asked her if they have ever gone for a test and she said that they have never because she trusts him. Finally, she accepted to go and test with her guy.”

Uniformly, the intervention facilitators enjoyed the intervention and perceived that participants increased their prevention advocacy: “Those who came back and reported that they had disclosed to a, b, c—they had talked to somebody about HIV relating their own stories. So, to me that was a very good experience that the participants had taken so passionately to share and take on this prevention advocacy aspect.”

Several participants noted having either more or longer sessions would allow them to practice their newly acquired skills further: “What we learned here is just a primary level teaching skill…we need to study more so that we are able to teach secondary…They should organize for us another session where we can advance to almost be able to teach at secondary level, not just to have only primary level knowledge.” Several requested they would like to hone their skills to allow them to advocate to larger groups of people who were not necessarily in their social network (e.g., church congregants). Participants also requested additional skills building for supporting social network members who have recently tested positive: “Everyone gets scared when they are hit with the news that they are positive. So, when I talked and convinced my friend and he checked his status, he found out that he was positive, so how do I counsel him?” Likewise, facilitators noted that participants primarily focused advocacy on HIV testing in their networks and suggested strengthening the intervention content around HIV testing in terms of preparing alters for the test and supporting them afterward.

Participants were pleased overall with the intervention facilitators, finding them to be patient and nonjudgmental, but were mixed about whether facilitators should be HIV-positive themselves. Some noted that HIV-positive facilitators could be helpful in talking about shared experiences, whereas others said facilitators of any HIV-serostatus could assume the role if they received sufficient training. Participants appreciated the mix of participants by gender and age, which provided opportunities to practice prevention advocacy with both men and women and opportunities for intergenerational learning (e.g., around age-specific challenges to condom use).

Preliminary Effects: Index Participants

As shown in Table IV, the intervention showed preliminary effects consistent with hypotheses. Compared to control index participants and alters at baseline vs. follow-up, intervention index participants [b (SE) = 0.4 (0.2), p = .017] and alters [b (SE) = 0.4 (0.2, p = .035] were significantly more likely to report engaging in prevention advocacy, operationalized as the extent to which they discussed eight different HIV prevention topics with people in their social network in the past 3 months. In addition, compared to control index participants, intervention index participants were less likely to feel internalized stigma [b (SE) = −0.3 (0.1), p = .012] or anticipated HIV stigma [b (SE) = −0.5 (0.2), p = .011], were less likely to have concerns about disclosure [b (SE) = −0.3 (0.1), p = .028], and were more likely to have disclosed to a main partner or spouse [OR (95% CI) = 10.0 (1.5−67.7), p = .022]. A marginally significant result indicated that intervention participants reported that they disclosed to a greater proportion of alters than did control participants at follow-up [b (SE) = 0.1 (0.1), p = .051]. Note that this effect was significant from baseline to 5-month follow-up [b (SE) = 0.2 (0.1), p = .007] but not at 8-month follow-up [b (se) = 0.04 (0.1), p = .44]. Furthermore, intervention participants reported significant higher social support from alters than did control participants at 5-month follow-up [b (SE) = 0.1 (0.1), p = 0.04], but not at 8-month follow-up [b (SE) = −0.01 (0.1), p = 0.86]; the overall repeated-measures analysis was not significant for social support [b (SE) = 0.1 (0.1), p = .26].

Table IV.

Game Changers Intervention Outcomes: Descriptive Statistics and Intention-to-Treat Repeated-Measures Regressions

	Baseline [M (SD) or %]	5-Month Follow-Up [M (SD) or %]	8-Month Follow-Up [M (SD) or %]	b (SE) or OR (95% CI) and p
Prevention Advocacy (index)				b (SE) = 0.4 (0.2), p = .017
Intervention	4.1 (0.9)	4.2 (0.9)	4.0 (1.0)
Control	3.8 (1.0)	3.5 (1.1)	3.6 (1.0)
Prevention Advocacy (alter)				b (SE) = 0.4 (0.2, p = .035
Intervention	4.0 (1.1)	4.1 (0.9)	4.0 (1.1)
Control	3.5 (1.2)	3.3 (1.0)	3.2 (1.0)
Internalized Stigma (index)				b (SE) = −0.3 (0.1), p = .012
Intervention	1.7 (0.7)	1.6 (0.6)	1.4 (0.6)
Control	1.8 (0.8)	1.9 (0.7)	1.7 (0.8)
Anticipated Stigma (index)				b (SE) = −0.5 (0.2), p = .011
Intervention	1.8 (1.4)	1.5 (1.0)	1.3 (0.8)
Control	1.6 (1.0)	1.8 (1.4)	1.8 (1.3)
Disclosure Concerns (index)				b (SE) = −0.3 (0.1), p = .028
Intervention	1.8 (1.1)	1.6 (0.8)	1.6 (1.1)
Control	1.8 (1.0)	1.8 (0.9)	1.9 (1.0)
Disclosed to Main Partner/Spouse (index)				OR (95% CI) = 10.0 (1.5–67.7), p = .022
Intervention	90.3%	93.1%	96.8%
Control	96.7%	89.3%	88.9%
% Alters Disclosed to (index)				b (SE) = 0.1 (0.1), p = .051
Intervention	53.7 (35.1)	57.9 (32.9)	61.3 (30.4)
Control	50.4 (33.6)	41.8 (29.1)	55.1 (30.2)
Social support from Alters (index)				b (SE) = 0.1 (0.5), p = .051
Intervention	1.6 (0.4)	1.6 (0.3)	1.6 (0.3)
Control	1.7 (0.3)	1.6 (0.3)	1.6 (0.2)
Social Network Density				b (SE) = 0.1 (0.03), p = .004
Intervention	34.2 (22.5)	36.8 (21.7)	34.2 (21.6)
Control	31.6 (25.9)	26.2 (17.8)	23.3 (13.5)
Social Network Maximum Degree Value				b (SE) = 2.4 (0.7), p = .001
Intervention	11.4 (5.0)	12.4 (4.3)	11.8 (4.8)
Control	10.1 (5.9)	9.5 (4.6)	9.3 (3.7)

Note: All regressions included the following covariates, selected because of their association with at least one of the outcomes at p < .05: for index participant outcomes, indicators for living alone and for having high household expenditures; for alter outcomes, a low education indicator.

The intervention also showed effects on social network structure: intervention participants’ networks maintained density over time, whereas the density of control participants’ networks decreased over time [b (SE) = 0.1 (0.03), p = .004]. See Figure IV for an illustration of the social networks of an intervention participant and a control participant with average density at baseline, with the intervention participant’s network maintaining a similar density but the control participant’s network decreasing in density over time. The maximum degree value remained similar over time in intervention participants’ networks but decreased in control participants’ networks [b (SE) = 2.4 (0.7), p = .001].

Figure IV.

Social network diagrams for intervention and control participants at baseline and 8-month follow-up, illustrating changes in density over time. Both participants have about average density at baseline. The intervention participant’s density remains similar over time (.3 at baseline, .3 at follow-up), whereas the control participant’s density decreases (.3 at baseline, .2 at follow-up). The size of the nodes correspond to the number of ties for each alter, with the largest node in each diagram representing the maximum degree value.

Preliminary Effects: Alters

The overall repeated-measures test was non-significant among alters for condomless sex in the past month [OR (95% CI) = 0.5 (0.2–1.6), p = .23]; however, any condomless sex with main partners in the past month showed a marginally significant effect from baseline to 5-month follow-up, decreasing by 7.7% (from 46.2% to 38.5%) in the intervention group but increasing by 10.5% in the control group (from 57.9% to 68.4%) [OR (95% CI) = 0.3 (0.1–1.2), p = .08; Cohen’s d = .76, a large effect size]. This effect was not significant at 8-month follow-up [OR (95% CI) = 0.9 (0.2–3.8), p = .85]. In addition, among the 20 alters who were HIV-negative prior to 5-month follow-up and who were not tested for HIV between baseline and the 5-month follow-up, 5 intervention alters (33.3%) vs. 1 control alter (20.0%) reported being tested for HIV post-intervention (in between 5- and 8-month follow-up), indicating a small-to-medium effect size of the difference between groups (Cohen’s d = .30); this difference was not significant in a Fisher’s Exact test. Note that of the six alters tested, none tested HIV-positive.

DISCUSSION

Our pilot test of Game Changers showed high intervention acceptability, high feasibility of the intervention and evaluation, and preliminary effects on outcomes consistent with hypotheses. Game Changers improved HIV prevention advocacy among both people with HIV and their alters, in the form of a greater number of topics discussed with social network members. The intervention also led to reduced internalized stigma and increased serostatus disclosure—variables that have been associated with HIV prevention behaviors such as sexual risk and ART nonadherence [65–68].

Our results for HIV stigma suggest that integration of compassion-focused therapy strategies, including activities and discussions around mindfulness and self-acceptance, into behavioral HIV interventions holds promise for overcoming HIV-related internalized stigma and shame. Having group sessions also may have led to better coping skills for stigma, as individuals heard about others’ experiences and problem-solving for ways to overcome stigma. Future research is needed to determine whether Game Changers decreases stigma among alters as well as among people with HIV. One prior effective stigma reduction intervention found that healthcare providers can be mobilized to reduce HIV stigma among other healthcare providers—but the effects on their larger social networks (e.g., family, friends) were not examined [69].

Our finding indicate that Game Changers affects social networks, in addition to index participants’ behaviors. In contrast to control participants, intervention participants appeared to maintain social connections over time, as represented by less change in network density. (However, we acknowledge that the effect of Game Changers on social support was only significant at 5-month follow-up, and not 8-month follow-up or overall, possibly due to the low sample size and thus insufficient statistical power.) While research on the positive aspects of network density is limited, in relevant prior research, network density has been associated with greater potential access to social support, which in turn is associated with better health outcomes [70–75]. Thus, one result of Game Changers participation may be maintaining a strong social network, which can improve health over the long term. Although we did not hypothesize that Game Changers would affect network structure, one aspect of Game Changers content emphasizes the need to access social support to maintain healthy, positive living—which may have resulted in participants maintaining and possibly encouraging new social connections among their network members to enable access to a strong support network.

Results suggested that, as hypothesized, alters may be affected by the intervention even though they did not attend intervention sessions. Alters showed significantly increased prevention advocacy and marginally less condomless sex in the intervention arm compared to the control arm; a larger percentage of intervention alters were tested for HIV, but this effect was not significant. However, we did not interview all alters with whom the index participant did prevention advocacy (due to the limited resources of this feasibility and acceptability study). Moreover, index participants in the intervention were told to approach any member of their social network for prevention advocacy, and thus they did not necessarily do prevention advocacy with the alters who were interviewed. Thus, we had limited statistical power to detect effects among alters.

Game Changers takes the perspective that all people with HIV can be trained to be agents of change regardless of their position in their social networks and communities. Other social network-based HIV prevention interventions [11–17] focus on specific venues, sub-populations, or high-risk communities (e.g., sexual minority men) and train prevention advocates who are perceived to be opinion leaders. For example, the evidence-based Peer Change Agent [14] and Popular Opinion Leader (POL) [12] models have been used to activate members of a specific community or risk group to be agents for prevention [15] and advocate to other members of the same group [11–17].

Future research should directly compare methods of change agent selection, in order to determine what selection method of change agents is most effective in sparking network change. For example, a prior study found that existing HIV prevention peer educators (employed in the community) showed greater leadership qualities than did individuals who bridged different social network subgroups (that were otherwise not connected), but existing peer educators also showed higher HIV risk behavior and were less open to new ideas; moreover, there was no significant difference among peer educators and individuals who bridged network subgroups in terms of encouraging condom use among peers [76]. Thus, using different methods to select change agents (e.g., socio-demographically vs sociometrically, using network position) may yield different types of individuals. Additional research studying the effectiveness of these different types of methods of selecting change agents would help to inform future peer leader intervention work.

We acknowledge methodological limitations beyond the issues with low statistical power noted above. Sexual risk behavior was only measured in the past month with alters’ main partner or spouse; it was not assessed for other partners or for index participants. We also relied on self-report measures of HIV testing. In Uganda, HIV testing dates are recorded in hard copy registers in individual clinics, and testing slips are not consistently provided to clients; moreover, testing clients may not save their testing slip due to stigma (e.g., fear that the slip might be seen by others). Thus, it would have been difficult in this small pilot to verify testing dates and results. For greater validity, future, larger-scale research could attempt to confirm HIV testing (through medical chart review) and recruit a greater proportion of alters in participants’ social networks.

Other methodological limitations include potential sample selection and social desirability biases. People with HIV were eligible to do prevention advocacy if they had disclosed to at least one person, and alters were eligible if they had been disclosed to. We believed that prevention advocacy effects would be stronger for change agents who had disclosed their serostatus, because they may be perceived as more credible (and experienced) around issues related to HIV testing and treatment compared to those who have not disclosed. In addition, individuals who have never disclosed their serostatus may be less motivated to engage in prevention advocacy, due to potentially higher levels of internalized HIV stigma (which is associated with lack of disclosure). Furthermore, facilitators may have been reluctant to comment negatively about the intervention, because they were asked for feedback by a study investigator who helped to develop the intervention.

The next step for this research would be to conduct a fully-powered randomized controlled trial in which effects are examined not only on social networks, but also on communities—in terms of reduced community-level stigma and improved HIV prevention behaviors overall. Such a trial should also include a cost effectiveness analysis so that healthcare organizations and policymakers could make informed funding decisions about HIV prevention programs. If the intervention is found to be effective and cost effective, scale-up of the intervention could potentially be done through HIV care clinics that already sponsor patient support groups. The added cost of Game Changers to existing support groups would only be for peer facilitator training, which would help to build capacity in communities for HIV prevention.

CONCLUSIONS

Our study shows that the Game Changers, a six-session, group-based HIV prevention advocacy intervention, is associated with significantly increased prevention advocacy, reduced internalized HIV stigma, increased HIV-serostatus disclosure, and maintenance of social network density among HIV-positive participants, and with marginally reduced condomless sex among alters. These findings suggest that positioning people with HIV as central to the solution for the HIV epidemic has the potential to reduce HIV stigma and improve prevention outcomes at the individual, household, and community levels. By increasing honest and open discussions about HIV across social networks within communities, we anticipate that Game Changers can lead to wide-scale stigma reduction and in turn, improved HIV prevention behaviors.