O15.6 Women’s approaches to involving others in making HIV trial enrollment decisions while pregnant in the US and malawi
Year: 2019
Type: conference-abstract
Abstract: Background There is a pressing need to expand the HIV prevention and treatment evidence base in pregnancy. However, research in pregnancy entails unique ethical and scientific complexities. The decision-making processes of potential trial participants in the doubly sensitive context of HIV, a highly stigmatized disease, and pregnancy, where multiple stakeholders and sociocultural practices may influence women’s preferences, are not well understood. Involvement of others in decision-making processes may vary, including who pregnant women consult and why, and the influence of consultations on decisions. Understanding women’s involvement of others in participation decisions is critical to inform practices supporting informed decision-making. Methods 140 in-depth interviews were conducted with pregnant or recently pregnant women; 70 in the U.S. and 70 in Malawi, 35 HIV-positive and 35 uninfected in each setting. Participants described whether they would involve others in enrollment decisions while pregnant for hypothetical HIV prevention or treatment research scenarios. Thematic analysis informed the analytic approach. Interviews were transcribed, translated when necessary, coded, and emergent themes identified. Results In both contexts, many women described collaborative decision-making approaches, particularly with male partners, female relatives and friends, and in the US, clinicians. Participants commonly described valuing others’ perspectives on risks and benefits and shared responsibility for the decision. Many women described sole decision-making authority, even if informing others was likely or necessary. Few women described partners having sole decisional authority. Several participants, particularly in Malawi, stated they would decide independently for fear of HIV stigma, accusations of infidelity, and relationship conflict. Conclusion Women described a variety of approaches and considerations in consulting others about HIV biomedical research enrollment while pregnant. Congress attendees will understand the importance of developing practices responsive to participants’ needs and preferences, including facilitating women’s ability to engage others in the decision-making process if she desires and supporting individual decision-making. Disclosure No significant relationships.
Source: Oral Presentations
Authors: Kristen Sullivan, Elana Jaffe, Anne Lyerly
Institution: University of North Carolina at Chapel Hill
Language: English
Topic: Ethics in Clinical Research
Field: Medicine
Domain: Health Sciences
Open Access status: bronze
OpenAlex ID: W3022812204