“A problem shared is half solved” – a qualitative assessment of barriers and facilitators to adolescent retention in HIV care in western Kenya

ABSTRACT

Adolescents living with HIV (ALHIV, ages 10–19) are retained in care at low rates, resulting in poor clinical outcomes. We investigated barriers and facilitators to retention experienced by perinatally infected ALHIV in western Kenya. This qualitative study purposefully sampled hospitalized ALHIV (engaged and not currently engaged in care), ALHIV engaged in outpatient care, and caregivers of ALHIV. In total, 116 ALHIV and caregivers participated in interviews or focus group discussions. Challenges related to the effects of both stigma and poverty at multiple socio-ecological levels pose the greatest barriers to adolescent retention in HIV care. Adolescents with positive relationships with family, clinic, and/or peers with the resources to support their care are facilitated to overcome these barriers. Conversely, adolescents with few of these supports due to orphanhood, caregiver illness, severe poverty, family conflicts, negative relationships with healthcare workers, or isolation, have the greatest challenges staying in care, and maybe at risk of disengagement. Experiences of trauma emerged from narratives of disengagement, and contribute to isolation, mental health challenges, and difficulties engaging in care. Retention of the most vulnerable adolescents will require interventions to mitigate the impacts of stigma, poverty, mental health issues, and limited social support on HIV care engagement.

KEYWORDS:

• Adolescents living with HIV
• continuity of patient care
• antiretroviral therapy
• lost to follow-up
• sub-Saharan Africa

Acknowledgements

We acknowledge and thank the adolescents and families who participated in this research.

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Funding

This work was supported by the Eunice Kennedy Shriver National Institute of Child Health and Human Development [grant number K23HD095778]; Indiana Clinical and Translational Sciences Institute; National Center for Advancing Translational Sciences [grant number UL1TR001108]; National Institutes of Health [grant number U01 AI069911]; Indiana Center for AIDS Research; Thrasher Research Fund.