“You guide them but ultimately they make decisions”: Insights into moving beyond the ethical dilemmas of adolescent consent to HIV care and research by stakeholders in Kenya

Abstract

Objectives: To identify best practices of performing and obtaining consent for HIV care and research involving adolescents, and strategies to promote representative participation of adolescents in HIV care and research in Kenya. Design: Qualitative interviews were conducted with stakeholders with expertise in ethical, legal, and social issues (ELSI) in Kenya. Methods: 18 semi-structured individual interviews were conducted with ELSI stakeholders recruited through professional networks, public databases, and other in-country resources. The interviews were conducted in English by Kenyan social scientists, audio-recorded, and transcribed verbatim. A qualitative analysis using a conventional content analysis approach and thematic network analysis techniques was performed to elucidate common themes around adolescent decision-making, autonomy, and consent practices regarding HIV care and research. Results: Three major themes emerged related to adolescent decision-making and consent practices in HIV care and research. First, ELSI stakeholders relied heavily on the risk/benefit ratio when evaluating when adolescents should be given autonomy to make independent decisions. Secondly, adults should involve adolescents in decision-making to empower and build adolescent capacities. Thirdly, Consent processes in HIV care and research involving adolescents should respond to changing circumstances in Kenya.2) adults shall empower and involve adolescents in decision-making; 3) current policies shall adjust to changing realities. Conclusion: Revisions to current policies and guidelines around consent practices in HIV care and research involving adolescents should consider replacing the requirement for parental consent with a shared consent model that emphasizes the importance of adolescent empowerment and receiving guidance supportive adult figures.