The role of disclosure in relation to assent to participate in HIV-related research among HIV-infected youth: a formative study

<p>Abstract</p> <p>Background</p> <p>The objective of this study was to develop a culturally appropriate approach for obtaining assent from children aged eight to 17 years to participate in paediatric HIV-related operational research in Kinshasa, Democratic Republic of Congo (DRC). Included within this objective was to determine whether or not HIV disclosure should be included as part of the assent process prior to research participation, a component of research participation, or not incorporated in any aspect of the child's involvement in the research. Factors that influence parents' and caregivers' decisions to disclose HIV status to children in non-research contexts were also explored.</p> <p>Methods</p> <p>A qualitative formative study was conducted. Semi-structured interviews were conducted with 19 youth living with HIV, 36 parents and caregivers of youth living with HIV, and 17 health professionals who provide care and support to youth living with HIV and their families. Participants were purposefully selected from three HIV care, treatment and/or psychosocial support programmes in Kinshasa, DRC.</p> <p>Results</p> <p>Most youth interviewed believed minors participating in HIV-related research should be informed of their HIV-positive status. Parents and caregivers and health professionals had varied perspectives on if and when HIV status should be disclosed to minors during research participation. The age of the youth influenced parents and caregivers' responses, and disclosure to adolescents was more frequently supported than disclosure to children.</p> <p>Several parents and caregivers, as well as some health professionals, suggested that minors should never be told their HIV-positive status when participating in HIV-related research, regardless of their age. Within the context of treatment programmes, disclosure of HIV status to minors was supported by youth, parents and caregivers, and health professionals as a means to improve adherence to medication.</p> <p>Conclusion</p> <p>In settings where most minors are unaware of their HIV infection, researchers should consider excluding the term, "HIV", when explaining HIV-related research to minors, and omitting it from assent forms or informational sheets related to research participation. However, an individualized disclosure plan should be initiated with parents and caregivers at the time of enrolment in HIV-related research, particularly in research that involves treatment.</p

The role of religion in HIV-positive women's disclosure experiences and coping strategies in Kinshasa, Democratic Republic of Congo

Literature from the U.S. has documented the importance of spirituality on the psychological health of people living with HIV/AIDS; however there is little published data on the ways in which people living with HIV/AIDS in Africa turn to religion for support. We conducted 40 in-depth interviews with HIV-positive women who were pregnant or had recently given birth in Kinshasa, Democratic Republic of Congo to inform the development of a comprehensive family-centered HIV treatment and care program. Women described how they relied upon their faith and turned to church leaders when they were diagnosed with HIV and prepared to share their diagnosis with others. The women used prayer to overcome the initial shock, sadness and anger of learning their HIV diagnosis. They turned to their church leaders to help them prepare for disclosing their diagnosis to others, including their partners. Church leaders were also important targets for disclosure by some women. Women's faith played an important role in their long-term coping strategies. Conceptualizing their infection as a path chosen by God, and believing that God has the power to cure their infection comforted women and provided them with hope. In settings like the Democratic Republic of the Congo, where there is a strong foundation of faith, we need to recognize how individuals draw upon their different health belief systems in order to develop and implement coherent and effective prevention, treatment and care strategies.HIV/AIDS Sub-Saharan Africa Religion Democratic Republic of Congo Women Coping

One size fits all? Standardised provision of care for survivors of sexual violence in conflict and post-conflict areas in the Democratic Republic of Congo.

BACKGROUND: Outcomes of sexual violence care programmes may vary according to the profile of survivors, type of violence suffered, and local context. Analysis of existing sexual violence care services could lead to their better adaptation to the local contexts. We therefore set out to compare the Médecins Sans Frontières sexual violence programmes in the Democratic Republic of Congo (DRC) in a zone of conflict (Masisi, North Kivu) and post-conflict (Niangara, Haut-Uélé). METHODS: A retrospective descriptive cohort study, using routine programmatic data from the MSF sexual violence programmes in Masisi and Niangara, DRC, for 2012. RESULTS: In Masisi, 491 survivors of sexual violence presented for care, compared to 180 in Niangara. Niangara saw predominantly sexual violence perpetrated by civilians who were known to the victim (48%) and directed against children and adolescents (median age 15 (IQR 13-17)), while sexual violence in Masisi was more directed towards adults (median age 26 (IQR 20-35)), and was characterised by marked brutality, with higher levels of gang rape, weapon use, and associated violence; perpetrated by the military (51%). Only 60% of the patients in Masisi and 32% of those in Niangara arrived for a consultation within the critical timeframe of 72 hours, when prophylaxis for HIV and sexually transmitted infections is most effective. Survivors were predominantly referred through community programmes. Treatment at first contact was typically efficient, with high (>95%) coverage rates of prophylaxes. However, follow-up was poor, with only 49% of all patients in Masisi and 61% in Niangara returning for follow-up, and consequently low rates of treatment and/or vaccination completion. CONCLUSION: This study has identified a number of weak and strong points in the sexual violence programmes of differing contexts, indicating gaps which need to be addressed, and strengths of both programmes that may contribute to future models of context-specific sexual violence programmes

Characteristics of presentation to sexual violence programmes in Masisi (conflict zone) and Niangara (post-conflict zone), Democratic Republic of Congo, 2012.

<p>*Chi-square test for proportions; **: including <i>mamans conseillères</i> in the Masisi programme; NGO: non-governmental organisation.</p><p>Characteristics of presentation to sexual violence programmes in Masisi (conflict zone) and Niangara (post-conflict zone), Democratic Republic of Congo, 2012.</p

Treatment characteristics of sexual violence survivors presenting for care in Masisi (conflict zone) and Niangara (post-conflict zone), Democratic Republic of Congo, 2012.

<p>*Chi-square test for proportions; **Follow-up completion was assessed at 7 days (visit 1), 28 days (visit 2), 3 months (visit 3), and 6 months (visit 4); denominators are the number of patients who were eligible for these follow-up visits; ***Chi-square test with Yates’ correction.</p><p>PEP: Post-Exposure Prophylaxis; STI: Sexually Transmitted Infection.</p><p>Treatment characteristics of sexual violence survivors presenting for care in Masisi (conflict zone) and Niangara (post-conflict zone), Democratic Republic of Congo, 2012.</p

Distribution of sexual violence cases attending the Médecins Sans Frontières sexual violence care programme in Masisi, Democratic Republic of Congo, 2012.

<p>Distribution of sexual violence cases attending the Médecins Sans Frontières sexual violence care programme in Masisi, Democratic Republic of Congo, 2012.</p