RESUMO
BACKGROUND: Meaningful community engagement (CE) in HIV prevention research is crucial for successful and ethically robust study implementation. We conducted a qualitative study to understand the current CE practices in HIV prevention research and to identify expressed and implicit reasons behind translational gaps highlighted by communities and researchers. METHODS: For this exploratory qualitative study, we recruited a purposive sample of participants from Indian government-recognised key populations such as men who have sex with men, transgender women, people who inject drugs and female sex workers; general population adults and adolescents/youth; and researchers. We conducted 13 virtual focus groups (n = 86) between July and October 2021. Data were explored from a critical realist perspective and framing analysis (i.e., examining how the participants framed the narratives). RESULTS: Participants reported that study communities, especially those from key populations, were primarily involved in data collection, but not necessarily with optimal training. Involvement of communities before the start of the study (e.g., obtaining feedback on the study's purpose/design) or once the study is completed (e.g., sharing of findings) were highlighted as priorities for meaningful engagement. Participants suggested meaningful CE in all stages of the study: (1) before the study-to get inputs in finalising the study design, drafting comprehensible informed consent forms and culturally-appropriate data collection tools, and deciding on appropriate monetary compensation; (2) during the study-adequate training of community field research staff; and (3) after the study-sharing the draft findings to get community inputs, and involving communities in advocacy activities towards converting evidence into action, policy or programs. Timely and transparent communications with communities were explicitly stated as critical for gaining and maintaining trust. Mutual respect, reciprocity (e.g., appropriate monetary compensation) and robust community feedback mechanisms were considered critical for meaningful CE. CONCLUSIONS: The findings highlighted the translational gaps and priority areas for capacity building to strengthen CE in HIV prevention research. It is not only important to engage communities at various stages of research but to understand that trust, dignity, respect, and reciprocity are fundamentally preferred ways of meaningful community engagement.
Engaging communities in HIV prevention research enhances the rigour and impact of research. We sought to understand the current community engagement practices and to identify how communities preferred to get involved in research. We explored these topics with key and general populations and researchers, by conducting 13 focus group discussions with 86 participants. We found that there was limited involvement of communities before the start of the study and after its completion, although trained community members were involved in data collection. Participants strongly suggested that the community should be involved throughoutbefore initiation, during the study and after study completion. Participants' preferred ways of engaging communities reflected that mutual respect, reciprocity and transparent communications are critical for meaningful and successful community engagement.
RESUMO
Background: Adolescent girls and young women (AGYW), aged 15-24 years, are disproportionately affected by HIV and other sexual and reproductive health (SRH) risks due to varying social, cultural, and economic factors that affect their choices and shape their knowledge, understanding, and practices with regard to their health. Socio-Behavioral Change Communication (SBCC) interventions targeted at strengthening the capabilities of individuals and their networks have supported the demand and uptake of prevention services and participation in biomedical research. However, despite growing global recognition of the domain, high-quality evidence on the effectiveness of SBCC remains scattered. This evidence and gap map (EGM) report characterizes the evidence base on SBCC interventions for strengthening HIV Prevention and Research among AGYW in low- and middle-income countries (LMICs), identifying evidence gaps and outlining the scope of future research and program design. Objectives: The objectives of the proposed EGM are to: (a) identify and map existing EGMs in the use of diverse SBCC strategies to strengthen the adoption of HIV prevention measures and participation in research among AGYW in LMICs and (b) identify areas where more interventions and evidence are needed to inform the design of future SBCC strategies and programs for AGYW engagement in HIV prevention and research. Methods: This EGM is based on a comprehensive search of systematic reviews and impact evaluations corresponding to a range of interventions and outcomes-aimed at engaging AGYW in HIV prevention and research - that were published in LMICs from January 2000 to April 2021. Based on guidance for producing a Campbell Collaboration EGM, the intervention and outcome framework was designed in consultation with a group of experts. These interventions were categorized across four broad intervention themes: mass-media, community-based, interpersonal, and Information Communication and Technology (ICT)/Digital Media-based interventions. They were further sub-categorized into 15 intervention categories. Included studies looked at 23 unique behavioral and health outcomes such as knowledge attitude and skills, relationship dynamics, household dynamics, health care services, and health outcomes and research engagement. The EGM is presented as a matrix in which the rows are intervention categories/sub-categories, and the columns are outcome domains/subdomains. Each cell is mapped to an intervention targeted at outcomes. Additional filters like region, country, study design, age group, funding agency, influencers, population group, publication status, study confidence, setting, and year of publication have been added. Selection Criteria: To be eligible, studies must have tested the effectiveness of SBCC interventions at engaging AGYW in LMICs in HIV prevention and research. The study sample must have consisted of AGYW between the ages of 15-24, as defined by UNAIDS. Both experimental (random assignment) and quasi-experimental studies that included a comparison group were eligible. Relevant outcomes included those at the individual, influencer, and institutional levels, along with those targeting research engagement and prevention-related outcomes. Results: This EGM comprises 415 impact evaluations and 43 systematic reviews. Interventions like peer-led interactions, counseling, and community dialogues were the most dominant intervention sub-types. Despite increased digital penetration use of media and technology-driven interventions are relatively less studied. Most of the interventions were delivered by peers, health care providers, and educators, largely in school-based settings, and in many cases are part of sex-education curricula. Evidence across geographies was mostly concentrated in Sub-Saharan Africa (70%). Most measured outcomes focused on disease-related knowledge dissemination and enhancing awareness of available prevention options/strategies. These included messaging around consistent condom use, limiting sexual partners, routine testing, and awareness. Very few studies were able to include psychographic, social, and contextual factors influencing AGYW health behaviors and decisions, especially those measuring the impact of social and gender norms, relationship dynamics, and household dynamics-related outcomes. Outcomes related to engagement in the research were least studied. Conclusion: This EGM highlights that evidence is heavily concentrated within the awareness-intent spectrum of behavior change and gets lean for outcomes situated within the intent-action and the action-habit formation spectrum of the behavior change continuum. Most of the evidence was concentrated on increasing awareness, knowledge, and building risk perception around SRH domains, however, fewer studies focused on strengthening the agency and self-efficacy of individuals. Similarly, evidence on extrinsic factors-such as strengthening social and community norms, relationships, and household dynamics-that determine individual thought and action such as negotiation and life skills were also found to be less populated. Few studies explore the effectiveness of these interventions across diverse AGYW identities, like pregnant women and new mothers, sex workers, and people living with HIV, leading to limited understanding of the use of these interventions across multiple user segments including key influencers such as young men, partners, families, religious leaders, and community elders was relatively low. There is a need for better quality evidence that accounts for the diversity of experiences within these populations to understand what interventions work, for whom, and toward what outcome. Further, the evidence for use of digital and mass-media tools remains poorly populated. Given the increasing penetration of these tools and growing media literacy on one end, with widening gender-based gaps on the other, it is imperative to gather more high-quality evidence on their effectiveness. Timely evidence generation can help leverage these platforms appropriately and enable intervention designs that are responsive to changing communication ecologies of AGYW. SBCC can play a critical role in helping researchers meaningfully engage and collaborate with communities as equal stakeholders, however, this remains poorly evidenced and calls for investigation and investment. A full list of abbreviations and acronyms are available in Supporting Information: Appendix F.
RESUMO
Despite progress in several dimensions of the global HIV response, there seems to be a significant gender and age disparity. Numerous organizations consider it a top priority to accelerate HIV prevention programming among Adolescent Girls and Young Women (AGYW) as unequal gender norms, limited agency and voice, and reduced access to resources put them at higher HIV risk. Gender and age have also been identified as critical gaps within prevention research to ensure the development of biomedical interventions that are responsive to the biological and social needs of AGYW. Towards this, the objectives of the proposed evidence and gap map are to; identify and map existing evidence and gaps on the use of diverse Social and Behaviour Change Communication (SBCC) strategies to strengthen adoption of HIV prevention measures and participation in research among AGYW in LMICs; and, identify areas where more interventions and evidence are needed to inform the design of future SBCC strategies and programs for AGYW engagement in HIV prevention and research.
