Abstract:
Pregnant women living with HIV (PWLHIV) are becoming increasingly involved in HIV research;
however, the ethical concerns regarding their decision-making related to research participation
are understudied. This qualitative study aimed to understand the perspectives and lived research
experiences of PWLHIV, intending to identify important considerations to inform best practices.
This study used semi-structured interviews (SSIs) of PWLHIV who participated in research studies
in Eldoret, Kenya. All interviews were audio-recorded, transcribed, and translated. Qualitative
analyses were performed, with line-by-line coding, constant comparison, axial coding, and
triangulation to identify central concepts. Twelve PWLHIV participated. Overall, participants had
positive experiences with HIV research. Most participants had difficulty distinguishing the
differences between the research process and enhanced clinical care. They reported a willingness
to participate in future HIV research studies and indicated altruism as the primary motivator.
Participants identified their preferences and experiences with recruitment, consenting,
reimbursement, and enrolment of infants in HIV research. The largest barrier for participating in
HIV research was identified as a concern that participation would lead to HIV disclosure. By
understanding the lived experiences of PWLHIV who participate in HIV research, future
researchers can design studies and consenting processes to optimize ethical research practices.
