Experiences along the HIV care continuum: perspectives of Kenyan adolescents and caregivers

Abstract

To be effective, HIV programmes should be responsive to the unique needs of diverse groups of infected adolescents.We highlight a range of adolescent perspectives on HIV services, including those who acquired HIV perinatally or sexually and those who were either in care, had dropped out of care, or had never enrolled in care. We conducted semi-structured interviews with 29 adolescents (aged 15–19) and 14 caregivers in western Kenya. Data were analysed using a descriptive analytical approach. Adolescents who were successfully linked had a supportive adult present during diagnosis; tested during hospitalisation or treatment for a recurrent or severe illness; and initiated treatment soon after diagnosis. Barriers to retention included side effects from HIV drugs, pill burden, and limited access to clean water and nutritious food. Support in family, school, and health facility environments was key for diagnosis, linkage, and retention.We make recommendations that may improve adolescent engagement in HIV services.

Supporting adolescents living with HIV within boarding schools in Kenya

“…Barriers and challenges to HIV care in boarding schools include restricted independence and increased controlled access to healthcare facilities (HCFs) and external providers, HIV status disclosure challenges, limited adherence support and difficulties with accessing daily antiretroviral treatment (ART), self and experienced stigma, and limited privacy and confidentiality [ 10 , 13 – 17 ]. There is an unmet need to design and evaluate interventions to address these challenges and improve health outcomes among AYLHIV, especially those attending boarding schools [ 18 , 19 ].…”

Retention and adherence

“…These are particularly complex for PHIV adolescents, who may experience uniquely challenging circumstances, including illness or death of family members; severe, life-threatening illness with delayed diagnosis; the difficult experience of learning their HIV status; and social isolation [5,60,66*-70]. Poverty, food insecurity, and family factors are also dominant[60,61,63,71], in addition to elements of the clinic[59,61] and school environments[59,61]. Emerging facilitators include strong social support networks, supported disclosure of HIV status to the child or close family members, family stability and support, and future orientation and self-sufficiency of adolescents[58**,60-62,64].…”

An adapted instrument to assess informed consent comprehension among youth and parents in rural western Kenya: a validation study

“…In a prior study on adolescent perceptions of health services, we assessed the understanding of consent by asking six key questions, and selectively revisiting the consent process depending on the answers. 32 This enhanced consent process targeted adolescents who planned to participate in HIV-related studies where parental permission had been waived. Thirdly, the development and use of the tool could have implications for the ethical review of research.…”