Ethical Considerations for Engaging Children and Adolescents Living with HIV in Research in African Countries: A Systematic Review.

Research engaging children and adolescents living with HIV (CALWH) is critical for youth-friendly services and HIV care, and researchers need to ensure that such engagement is ethical. We conducted a systematic review to identify key ethical considerations for the engagement of CALWH in research. The review focused on primary research articles conducted in African countries that examined ethical issues in CALWH engaged in research. Ten studies met the inclusion criteria; the following seven key domains were extracted: 1) justifications for engaging CALWH in research; 2) community involvement; 3) informed consent/assent; 4) caregiver involvement; 5) perceptions of benefits; 6) perception of the risks of involvement; and 7) confidentiality. These domains can inform the ethical engagement of CALWH in research.

Ethical Considerations for Engaging Youth Living with HIV in Research: Perspectives from Youth, Their Caregivers and Subject Matter Experts in Kenya.

Introduction: Engaging youth living with HIV (YLWH) in research is critical to improving HIV-related outcomes, but their involvement raises unaddressed bioethical questions. Methods: This study used qualitative inquiry with Kenyan YLWH, caregivers, and subject matter experts (SMEs) to evaluate ethical considerations and strategies for research involving YLWH. Results: Interviews were conducted with 99 participants: 40 YLWH (median age 17.5, 50% female), 20 caregivers (70% female), and 39 SMEs (44% female). All participant groups discussed the need for HIV disclosure status assessment, confidentiality, and engagement of caregivers. Youth participants discussed the importance of clear protocol explanations and developing good rapport. All participant groups perceived youth under 18 to be harder to recruit due to a number of identified barriers. Clinic settings were the most acceptable place for recruitment. Conclusion: Participants provided perspectives on engaging YLWH in research that can be incorporated into protocols and regulatory guidelines.

HIV-Related Stigma Shapes Research Participation for Youth Living With HIV in Kenya.

Introduction: HIV stigma affects medication adherence, psychosocial outcomes, and clinical management for youth living with HIV (YLWH). We explored the impact of HIV stigma on research participation, to inform the ethical engagement of this vulnerable group. Methods: We interviewed 40 YLWH, 20 caregivers, and 39 subject matter experts (SMEs); transcripts were analyzed by HK and EG, with emerging themes confirmed by JA and AC. Results: All categories of participants identified the impacts of stigma on YLWH research participation, suggesting implementing privacy protections, considering recruitment locations carefully, and developing supportive relationships with YLWH. SMEs suggested that YLWH experience uniquely high risks from stigma due to the compounding effects of developmental challenges and transitionary life period. Accidental HIV disclosure and subsequent stigma were identified as a risk of research participation; some viewed the creation of community through research as a benefit. Conclusion: Participants provided insights into stigma-related considerations for research with YLWH, which may guide engagement protocols.

Multi-media teacher training and HIV-related stigma among primary and secondary school teachers in Western Kenya.

ABSTRACTHIV stigma is associated with delayed HIV disclosure and worse clinical outcomes for adolescents living with HIV (ALWH). Teachers critically influence school environments, but are understudied in terms of HIV stigma. We implemented a school-level, cluster-randomized trial to assess the impact of a one-day multi-media training on the knowledge, attitudes and beliefs (K/A/B) of school teachers in western Kenya. Teachers' K/A/B were evaluated at baseline and six months. Additionally, we assessed stigma with ALWH enrolled in the included schools to explore the impact of the training. Teachers (N = 311) and ALWH (N = 19) were enrolled from 10 primary and 10 secondary schools. The intervention and control groups did not significantly differ in overall stigma score (mean 1.83 vs. 1.84; adjusted difference, 0.18 [95% CI, -0.082 to 0.045]) at six months; however, we found a trend towards improvement in overall stigma score and a significant difference in the community discrimination sub-scale among secondary school teachers (mean 3.02 vs. 3.19; adjusted difference, -0.166 [95% CI, -0.310 to -0.022]). ALWH reported few experiences of discrimination, but emphasized keeping their HIV status secret (84%). The teacher-training reduced secondary school teacher perceptions of community-level stigma, but did not impact individual attitudes or beliefs..

A Qualitative Examination of Perceived Stigma and its Sources Among Adolescents Living With HIV in Western Kenya.

Introduction. Adolescents (10-19 years) living with HIV (ALWH) face unique challenges in controlling HIV long-term, including stigma and perception of stigma within their communities. Methods. We conducted a qualitative investigation of the sources of perceived HIV-related stigma with ALWH in western Kenya. Forty-six ALWH on ART, aware of their status, and engaged in care were enrolled. Interviews explored perceived stigma by probing the individuals and experiences that adolescents identify as causing or perpetuating their ongoing fears. Results. Participants (54% male, mean age 17.4) reported ongoing fears of stigmatization related to friends and peers not living with HIV. They described previous enacted and first-hand observations of stigma, most often occurring in pre-adolescence, by age mates or peers at school as the most common cause for their ongoing fears. Conclusions. Perceived stigma is prevalent among ALWH and develops from experiences in pre-adolescence. Anti-HIV stigma interventions addressing educators and children in school settings to combat perceived stigma at its source should be investigated.

Social Stigma Related to COVID-19 Disease Described by Primary and Secondary School Teachers and Adolescents Living With HIV in Western Kenya.

Introduction: Understanding community members' knowledge, attitudes, and beliefs about the novel SARS-CoV-2 virus and the prevalence of associated stigma are critical steps for increasing accurate public health knowledge, encouraging uptake of preventative or mitigating health behaviors, and ultimately bringing the COVID-19 pandemic under control. Methods: We conducted a one-time, phone-based assessment to assess the presence of perceived COVID-19 community stigma reported by Kenyan primary and secondary school teachers, as well as adolescents living with HIV. Participants were previously enrolled in an ongoing, cluster-randomized trial to evaluate the impact of multi-media teacher training on teachers' negative attitudes and beliefs around HIV. The SAFI Stigma Questionnaire, a validated tool to assess HIV-related stigma in this setting, was adapted to ask questions regarding the stigma and discrimination experienced or perceived during the COVID-19 pandemic. Results: We enrolled 330 participants in this study, including 311 primary and secondary teachers (56% female, average age 36 years) and 19 adolescents living with HIV (57.89% female, average age 16.37 years). None of the adolescent participants reported witnessing or experiencing discrimination related to COVID-19, nor did they report losing financial and/or social support. In contrast, the teacher participants reported prominent social stigma experiences of various levels and related to COVID-19. Teachers in the intervention group, who had completed the multi-media training on HIV-related stigma, were significantly less likely to think that the community viewed COVID-19 as a dirty or shameful disease, and less likely to feel it was important to keep their COVID-19 infection a secret, compared to the teacher control group. Conclusion: These findings suggest that COVID-19-related stigma may be prevalent in western Kenya and that interventions to reduce community-level stigma for HIV may also have a protective impact on other stigmatized infectious diseases such as COVID-19.

Perspectives of education sector stakeholders on a teacher training module to reduce HIV/AIDS stigma in Western Kenya.

BACKGROUND: For adolescents living with HIV (ALWH), school may be the most important but understudied social sphere related to HIV stigma. Teachers are role models in the classroom and within the community, and their attitudes and behavior towards people living with HIV may have critical psychosocial and treatment ramifications. Altering teachers' knowledge, attitudes and beliefs (K/A/B) about HIV could reduce the stigmatizing content within their teaching, classrooms and school, improving the environment for ALWH. METHODS: We developed a one-day teacher training module to enrich teacher K/A/B that included lecture presentations, HIV films and educational animation, structured instructions for teacher role play scenarios, and a question-and-answer session facilitated by a trained ALWH peer educator. We also conducted key informant interviews with education sector subject matter experts (SMEs), including education officers, county commissioners and head teachers to review and provide feedback on the teacher training module. RESULTS: We assembled an adolescent community advisory board and recruited 50 SMEs to review the training module and provide feedback. All SME participants stressed the importance and need for interventions to reduce stigma in the classroom, highlighting their own experiences observing stigmatizing behaviors in the community. The participants perceived the training as culturally relevant and easy to understand and had minor suggestions for improvement, including using image-based resources and brighter colors for ease of reading. All participants thought that the training should be expanded outside of the schools, as all people in a community have a role in the reduction of HIV stigma, and offered suggestions for other settings for implementation. CONCLUSION: Data from interviews with education sector stakeholders demonstrate that our process for developing a culturally appropriate multi-media intervention to reduce HIV stigma in the schools was feasible.