The perceived challenges of perinatal HIV in adolescents: a qualitative study

Abstract

ABSTRACT As access to antiretroviral therapy has improved, so the population of perinatally HIV-infected adolescents (PHIVA) has grown. Data is emerging showing that this distinctive population faces increased risk of physical and psychosocial challenges, but there is limited research on what their experiences and perceptions are. This study aimed to explore the perceived challenges that PHIVA have. Adolescents with perinatal HIV participated in semi-structured individual interviews. Clinical data was collected from their files. Substantive statements from the transcribed interviews were aligned with deductive codes, and then further explored through inductive analysis. Data saturation was reached at 19 interviews. The mean age of the participants was 13.1 (SD ±2.2) years and the majority were female (63.2%). All of the participants were virally suppressed and the mean CD4 percentage was 40.5 (SD ± 6.7). The most common codes were poor endurance (n = 10; 52.6%), pain (n = 10; 52.6%) and fatigue (n = 7; 36.8%), with only one participant not experiencing any challenges. Other codes were decreased community participation, poor muscle strength and/or motor skills; emotional difficulties; cognitive issues and other health issues. Together these codes formed the categories of physical challenges, psychosocial challenges, and other health issues, leading to the theme ‘living life as an adolescent with perinatally acquired HIV’. Despite the full sample of PHIVA being virally suppressed, there were still noteworthy challenges that they experienced, with poor endurance, pain and fatigue being the most common. This potentially impacts on their community participation and their quality of life. Since not all PHIVA are as well managed as this group, one would expect even greater challenges in other PHIVA. This study highlights the importance of healthcare providers performing a comprehensive assessment of a PHIVA’s health, thus tailoring a model of care specific to their needs.