Feasibility and acceptability of a peer youth led curriculum to improve HIV knowledge in Northern Tanzania: resilience and intervention experience from the perspective of peer leaders

There are an estimated four million youth (15–24 years of age) living with HIV globally, 85% of whom live in sub-Saharan Africa [1]. Adolescence is a complicated developmental period, where high priority is placed on fitting into peer groups. Finding acceptance with peers can be tricky in the context of living with HIV, which poses unique social, developmental, and health challenges as a stigmatized and sexually transmitted disease.

Youth living with HIV (YLWH) face numerous psychosocial challenges that impact HIV outcomes, including financial stressors, loss of parent(s), internalized stigma, and difficulty coming to terms with their HIV diagnosis [2‐4]. Adequate knowledge and understanding of HIV is associated with engagement in care, adherence to antiretroviral therapy, and treatment outcomes [5, 6]. There is a need for interventions to promote resilience, reduce stigma, improve confidence, and improve HIV knowledge in this population of YLWH [7].

Throughout the HIV pandemic, peer youth led (PYL) interventions have been used in HIV programming to promote behavior change, largely in the context of HIV prevention efforts [8‐10]. Because adolescents and youth often learn from and are influenced by peers, it is thought that peer leaders are best able to present health knowledge to encourage behavioral change in youth. Peers often have similar life experiences and may come from the same community [11]. PYL interventions have been shown to contribute to positive change in HIV knowledge, improved community attitudes and norms, and improved adherence, retention in care and psychosocial wellbeing for YLWH [8, 12].

Peer leaders who deliver HIV interventions experience benefit from leadership roles. One group found that peer leaders in a PYL HIV intervention demonstrated improved HIV knowledge and a higher perception of themselves as change agents when compared to control groups [13]. Another group in Rwanda commented on the ways that youth in PYL interventions have gained confidence, competence, and enthusiasm [14].

PYL interventions are not without potential challenges. For instance, peer leaders may not always model best behavior and their peer status may at times conflict with their professional role [15]. Moreover, there may be concern that peers may not impart knowledge as accurately and sensitively as professional counterparts.

There is a need to develop and evaluate PYL interventions for participants living with HIV as well as assess the challenges and effectiveness of PYL interventions in improving HIV outcomes in Tanzania and in other low- and middle-income countries. We designed a 12 session HIV curriculum for youth living with HIV, delivered by peer leaders at two sites in Northern Tanzania. The goal of this study was to assess the feasibility and acceptance of a PYL HIV curriculum integrated into routine clinical care; evaluate change in participants’ knowledge; and to explore resilience, fears, and motivations among peer leaders before and after assuming the leadership role.

Characteristics of peer leaders are presented in Table 2. Seven peer leaders (N = 4 male; 3 female; 21 years of age on average) participated in the intervention. All peer leaders were perinatally-infected with HIV, and peer leaders had an HIV diagnosis for an average of 11.5 (SD: 0.8) years. As opposed to being told about their HIV status, all peer leaders reported they figured it out on their own before being told by a family member or health care provider.

To our knowledge, this is the first study to describe a PYL curriculum integrated into routine HIV clinical care to improve knowledge about HIV specifically for HIV-positive youth. Results from this study support the use of a PYL HIV curriculum integrated into routine adolescent HIV clinics as a feasible and acceptable means to improve HIV knowledge. Peer leaders’ high fidelity to lesson scripts and youth participants’ preference for peer leaders support the feasibility and acceptability of a PYL HIV curriculum, and pre- vs. post-lesson knowledge improved in nine of ten lessons. PYL interventions to date have largely been geared toward HIV prevention efforts [9, 11, 12]; interventions to improve HIV outcomes in YLWH have focused less on improving HIV knowledge per se and more on retention in care and psychosocial wellbeing [8, 14]. Compared to a PYL intervention that showed significant improvement in knowledge about HIV (basic HIV transmission, prevention, and attitudes toward HIV) for in-school (largely HIV-seronegative) adolescents in Nigeria [21], the competency questions within our PYL curriculum were more difficult (see Supplemental File 1). Some lessons showed greater knowledge improvement than others; the fact that topics with a heavier biomedical focus (ART, CD4 and viral load monitoring, and adherence with a component of HIV resistance) showed the least amount of change pre- vs. post-lesson suggests that these lessons may be more effective when co-led by trained clinic staff or require enhanced training of peer leaders.

The PYL HIV Curriculum improved resilience of peer leaders as measured by the CD-RISC (developed in the United States) by a mean of 3.8 points. Resilience can be understood as the ability or resolve of an individual to cope with stress [17, 22]. Peer leader resilience scores (mean 60.7 pre-intervention and 64.5 post-intervention) are below standard reference scores (mean 80.4, SD 12.8) seen in the CD-RISC US adult “general population” (i.e., non-help seeking, 77.4% white-American, mean age of 43.8); however, they are consistent with scores in adolescents in South Africa and numerous other cohorts globally that include students and young adults [17, 23, 24]. The fact that a wide range of CD-RISC scores have been reported in the literature supports the notion that resilience is influenced by culture, age, and other factors [25]. Identifying and harnessing resilience in YLWH can have important benefits on both personal and socioecological levels [26]. All but one peer leader demonstrated improved or stable resilience over the course of the intervention; one peer leader did not have a recorded post-intervention resilience measure due to a problem with the audio recording process. The peer leader who saw a decrease in resilience moved to a new city during the intervention but conducted her post-interview by phone; her drop in resilience in some ways could represent how resilience in youth may be dependent on social networks (i.e., removing supportive social networks can negatively impact resilience). Although it is difficult to determine whether a mean difference of 3.8 is clinically meaningful, qualitative thematic analysis suggests that peer leaders gained confidence in their leadership skills and ability to cope with stress, which are components of resilience; peer leaders also saw themselves as examples of leadership [15].

While the PYL HIV curriculum normalized the HIV experience and improved leadership confidence among peer leaders, anticipated stigma and concerns regarding HIV status disclosure remained barriers. Interventions that normalize HIV and facilitate peer support have been shown to be effective in reducing HIV-related stigma and improving mental wellbeing [27‐29]. Peer leaders’ anticipated stigma and fear of disclosure is an example of the ways in which stigma among perinatally-infected YLWH remains prevalent [4, 30]; this is despite widespread rollout of antiretroviral therapy, which has been associated with reduced stigma among adults living with HIV in sub-Saharan Africa [27, 31]. Compared to what is seen in adult populations, HIV-related stigma for YLWH is complex due to developmental, sociocultural, and economic challenges that come with HIV for adolescents and young adults [3, 32]; further research is needed to better understand stigma in this population. Moreover, to create lasting change, interventions should understand and address anticipated stigma and concerns regarding HIV status disclosure in addition to improving HIV knowledge. Nevertheless, how to best address anticipated sigma and disclosure concerns for YLWH in contexts such as Northern Tanzania remains unclear and is a challenge for researchers and practitioners alike.

The study has several limitations. Pre- and post-knowledge assessments were collaboratively designed by peer leaders, supervisors, and HIV experts. They were not validated nor adjusted despite the variety of participant ages (12–24 years of age). There were limitations on data capture and data entry that precluded robust analysis between sites. PYL teaching was integrated into routine clinic and participants could be called to see the health care provider during the lesson. As such, some pre- and post-lessons assessments were possibly completed by different people or in groups. Teaching is a skill that is refined over many years. Peer leaders had varying levels of teaching ability despite intensive weekly training. Peer to peer interventions require thoughtful peer leader selection and ongoing and intensive supervision. Relocation of a highly trained female peer leader interrupted the group dynamic and left only male peer leaders at the MRRH clinic. Education level of a peer leaders may have been a limiting factor in the teaching. Finally, low sample size of peer leaders limited resilience analyses.

This study demonstrates that a PYL curriculum to improve HIV knowledge integrated into routine adolescent HIV clinic in Tanzania is feasible, acceptable, and may improve knowledge while also benefiting peer leaders, thereby supporting efforts to scale and sustain PYL interventions for YLWH.