Healthcare workers' perspectives and practices regarding the disclosure of HIV status to children in Malawi: A cross-sectional study

Background: In 2011 the World Health Organisation recommended that children with a diagnosis of HIV be gradually informed about their HIV status between the ages of 6 and 12 years. However, to date, literature has focused mainly on primary caregiver and child experiences with HIV disclosure, little is known about healthcare workers' perspectives and practices of HIV status disclosure to children. The aim of this study was to assess healthcare workers' perspectives and practices regarding the disclosure of HIV status to children aged between 6 and 12 years in Malawi. Methods: A cross-sectional survey was used to collect data from 168 healthcare providers working in antiretroviral clinics in all government District and Tertiary Hospitals in Malawi. Participants were asked questions regarding their knowledge, practice, and barriers to HIV disclosure. Data were analysed using binary logistic regression. Results: Almost all healthcare workers (98%) reported that it was important to disclose HIV status to children. A significant proportion (37%) reported that they had never disclosed HIV status to a child and about half estimated that the rate of HIV disclosure at their facility was 25% or less. The main barriers to disclosure were lack of training on disclosure (85%) and lack of a standard tool for disclosure (84%). Female healthcare workers (aOR) 2.4; 95% CI: 1.1-5.5) and lack of training on disclosure (aOR 7.7; 95% CI: 3.4-10.7) were independently associated with never having disclosed HIV status to a child. Conclusions: This study highlights the need for providing appropriate training in HIV disclosure for healthcare workers and the provision of standardised disclosure materials

Track A Basic Science

Peer Reviewedhttps://deepblue.lib.umich.edu/bitstream/2027.42/138319/1/jia218438.pd

Lessons from PrEP: a qualitative study investigating how clinical and policy experts weigh ethics and evidence when evaluating preventive medications for use in pregnant and breastfeeding women

This study explored how multinational HIV experts weigh clinical, evidential, and ethical considerations regarding preexposure prophylaxis in pregnant/breastfeeding women. Semi-structured interviews were conducted with experts in HIV policy, research, treatment, and implementation from three global regions. A constant comparative approach identifed major themes. Experts noted that exclusion of pregnant women from research limits evidence regarding risks/benefts, emphasizing that underinclusion of pregnant women in RCTs shifts the onus of evidence-building to clinical care. Experts discussed approaches for weighing evidence to make decisions, including triangulating evidence from sources other than RCTs. Likelihood and severity of disease strongly infuenced decisions. Less efective interventions with limited fetal risk were preferred over interventions of uncertain safety, unless the disease was serious. Experts resisted the dichotomous choice between protecting maternal and fetal interests, arguing that these interests are intertwined and that more holistic approaches to maternal–fetal balance support greater inclusion of pregnant women in research

Lessons from PrEP: a qualitative study investigating how clinical and policy experts weigh ethics and evidence when evaluating preventive medications for use in pregnant and breastfeeding women

This study explored how multinational HIV experts weigh clinical, evidential, and ethical considerations regarding preexposure prophylaxis in pregnant/breastfeeding women. Semi-structured interviews were conducted with experts in HIV policy, research, treatment, and implementation from three global regions. A constant comparative approach identifed major themes. Experts noted that exclusion of pregnant women from research limits evidence regarding risks/benefts, emphasizing that underinclusion of pregnant women in RCTs shifts the onus of evidence-building to clinical care. Experts discussed approaches for weighing evidence to make decisions, including triangulating evidence from sources other than RCTs. Likelihood and severity of disease strongly infuenced decisions. Less efective interventions with limited fetal risk were preferred over interventions of uncertain safety, unless the disease was serious. Experts resisted the dichotomous choice between protecting maternal and fetal interests, arguing that these interests are intertwined and that more holistic approaches to maternal–fetal balance support greater inclusion of pregnant women in research

The role of male partners in women's participation in research during pregnancy: a case study from the partners demonstration project.

The exclusion of pregnant women from health research remains a significant challenge globally. In settings where cultural traditions and gender norms support a more restricted decision-making role for women in general, little is known about the attitudes of male partners toward the inclusion of women in research during pregnancy. Understanding the expectations of both men and women in such cultural settings offers an opportunity to engage and address local ethical concerns to improve women’s access to research during pregnancy and enhance intervention development. In this paper, we present a qualitative research ethics case study, drawn from the Partners Demonstration Project of pre-exposure prophylaxis (PrEP) in Kenya, regarding the role of male partners in decision-making to continue PrEP during pregnancy. PrEP is an effective HIV prevention tool; however, since pregnant women were excluded from early PrEP clinical trials, safety and efficacy data during pregnancy are limited. Given continued high rates of HIV infection for women, some pregnant women are now being provided with PrEP or are involved in PrEP research. Men and women in our study were equally concerned about the health risks of PrEP to the fetus and depended on healthcare provider guidance to understand these risks. Because the demonstration project enrolled couples, an implicit social expectation for many women’s continuation of PrEP during pregnancy was consultation with male partners. Some women reported that consenting to participate was exclusively a woman’s decision; however, many reported that they deferred to their male partner’s opinion and support during the decision-making process. Most male partners believed women should not participate in research studies without their partner’s permission, while a few men believed participation was ultimately a woman’s decision. We suggest that relational autonomy can support a middle ground for informed consent that promotes women’s autonomy while accommodating partner engagement

Debrief Reports to Expedite the Impact of Qualitative Research: Do They Accurately Capture Data from In-depth Interviews?

"Debrief reports" (DRs) use structured forms to capture key concepts from in-depth interviews and focus group discussions. They are completed by interviewers and rapidly disseminated to key team members to facilitate identification of potential problems with study procedures, recruitment, or participant engagement and to inform critical adjustments, which can be especially pertinent in intervention studies. Their reliability and validity have yet to be formally evaluated. To assess the accuracy of DRs in capturing key content, raters analyzed a random sub-sample of 20 pairs of de-identified transcripts and their linked DRs from the VOICE-D trial. Analyses generally supported the accuracy of DRs; however, pertinent information from transcripts was occasionally missed or recorded with discrepancies or lack of detail. Longer transcripts and DR sections describing complex topic areas were more likely to involve discrepancies. Recommendations are offered for further research and optimizing the use of DRs

“I did not want to give birth to a child who has HIV”: Experiences using PrEP during pregnancy among HIV-uninfected Kenyan women in HIV-serodiscordant couples

Objectives: The perceptions, motivations, and beliefs of HIV-uninfected women about pre-exposure prophylaxis (PrEP) use during pregnancy can influence its uptake and adherence. This study elicited the views of HIV-uninfected women with personal experience taking PrEP during pregnancy. Design: Qualitative interviews were conducted with HIV-uninfected women who had personal experience taking PrEP while pregnant. Methods: Semistructured interviews were conducted with 21 HIV-uninfected Kenyan women in HIV-serodiscordant couples enrolled in an open-label PrEP demonstration project who became pregnant while using PrEP and continued PrEP through their pregnancy. Interviews were audio-recorded and transcribed into English. A qualitative descriptive analysis was performed, using a constant comparison approach to identify key themes related to PrEP use in pregnancy. Results: Desire to remain HIV uninfected and have an HIV-free infant were strong motivators influencing continued use of PrEP during pregnancy. Supporting HIV-infected partners and childbearing within an HIV-serodiscordant relationship were also motivators. Women had challenges distinguishing normal pregnancy symptoms from PrEP side effects and were concerned that observed side effects could be signs of danger for the infant related to PrEP exposure. Health care providers were important conduits of knowledge about PrEP, and continuity of PrEP providers throughout pregnancy facilitated adherence. Conclusions: HIV-uninfected women in HIV-serodiscordant couples were motivated to use PrEP during pregnancy to remain HIV uninfected and to have an HIV-free child but had concerns about side effects. Health care providers will be important for PrEP messaging and adherence support in this unique population

Perceived social influences on women’s decisions to use medications not studied in pregnancy: a qualitative ethical analysis of PrEP implementation research in Kenya

Implementation research ethics can be particularly challenging when pregnant women have been excluded from earlier clinical stages of research given greater uncertainty about safety and efficacy in pregnancy. The evaluation of HIV pre-exposure prophylaxis (PrEP) during pregnancy offered an opportunity to understand important ethical considerations and social influences shaping women’s decisions to participate in evaluation of PrEP and investigational drugs during pregnancy. We conducted interviews with women (n=51), focus groups with male partners (5 FGDs), interviews with health providers (n=45), 4 FGDs with pregnant/postpartum adolescents and 4 FGDs with young women. Data were analyzed using thematic content analysis, including ethical aspects of the data. Our study reveals that women navigate a complex network of social influences, expectations, support, and gender roles, not only with male partners, but with clinicians, family, and friends when making decisions about PrEP or other drugs that lack complete safety data during pregnancy