“I think the parent should be there because no one was born alone”: Kenyan adolescents’ perspectives on parental involvement in HIV research

Abstract

Despite a pressing need for adolescent HIV research in sub-Saharan Africa, ethical guidance for conducting research among minor adolescents is lacking. One ethical issue is the degree to which parents should be involved in the research process. The existing discourse is predominantly speculative and focuses on negative consequences of parental involvement. We use empirical data to describe Kenyan adolescents’ perspectives on parental involvement in consent and disclosure of HIV test results within a research study context. We conducted two rounds of focus group discussions with 40 adolescents in Western Kenya to ask about minor adolescent participation in HIV research. We analysed data using codes and matrices. Kenyan adolescents were largely in favour of parental involvement during the research process. Half felt adolescent minors should solicit parental consent to participate, and nearly all said parents should learn adolescent minors’ HIV test results in order to provide necessary support. From their perspective, involvement of parents in research extends beyond obtaining their consent to providing essential support for youth, regardless of HIV status, both during and beyond the research study. Ethical guidelines that prioritize adolescent autonomy in research must take into account reasons to involve parents considered important by adolescents themselves, particularly in low-resource settings.

Soliciting parental consent among adolescent minor mothers: A barrier in adolescent HIV research?

“…Our finding that parental consent did not negatively affect enrolment is consistent with studies in other African contexts, wherein some adolescents did not perceive parental consent as a barrier to participation. [15,20,21] Conversely, findings contradict other studies that have explored adolescents' perceptions on how parental consent might affect their participation in an HIV research study. Adolescent minors in these studies have mentioned the following perceived barriers to participation: parental access to sensitive health information, potential disapproval, and interpretation of their participation as being sexually active or LGBTQ.…”

A designathon to co-create community-driven HIV self-testing services for Nigerian youth: findings from a participatory event

“…Youth typically contribute to research as participants, key informants, and assistants [10,11]. While some studies have expanded youth engagement in HIV research by creating youth advisory boards (YABs), the extent of meaningful engagement varies [12][13][14][15][16][17][18][19][20][21]. Providing youth with opportunities to create solutions to health problems that affect them can enhance program implementation and build capacity for youth as co-creators [10,22].…”

Principles of research ethics: A research primer for low- and middle-income countries

“…While 18 years is considered the age of adulthood in many Western countries, other cultures may consider younger persons to have reached maturity [ 28 , 29 ]. In one qualitative study of 15–19 year old participants in HIV research in Kenya, 50% thought parental consent should be sought, 25% felt this was not necessary, and 25% had mixed feelings [ 30 ].…”

“…Groves et al [ 30 ] used qualitative methods to explore adolescents' views on research requirements for parental involvement in studies of HIV in youth.…”