“We did not know what was wrong”—Barriers along the care cascade among hospitalized adolescents with HIV in Gaborone, Botswana

Abstract

High mortality among adolescents with HIV reflects delays and failures in the care cascade. We sought to elucidate critical missed opportunities and barriers to care among adolescents hospitalized with HIV at Botswana’s tertiary referral hospital. We enrolled all HIV-infected adolescents (aged 10–19 years) hospitalized with any diagnosis other than pregnancy from July 2015 to January 2016. Medical records were reviewed for clinical variables and past engagement in care. Semi-structured interviews of the adolescents (when feasible) and their caregivers explored delays and barriers to care. Twenty-one eligible adolescents were identified and 15 were enrolled. All but one were WHO Clinical Stage 3 or 4. Barriers to diagnosis included lack of awareness about perinatal HIV infection, illness or death of the mother, and fear of discrimination. Barriers to adherence to antiretroviral therapy included nondisclosure, isolation, and mental health concerns. The number of hospitalized HIV-infected adolescents was lower than expected. However, among those hospitalized, the lack of timely diagnosis and subsequent gaps in the care cascade elucidated opportunities to improve outcomes and quality of life for this vulnerable group.

“I just keep quiet about it and act as if everything is alright” – The cascade from trauma to disengagement among adolescents living with HIV in western Kenya

“…Risk factors for disengagement from HIV care may be heterogeneous, ranging from housing needs and poverty, to stigma and psychological challenges [4,[6][7][8][9][10]. Adolescents are particularly affected by disclosure issues, stigma, mental health, family-level factors and transitions in care [4,[6][7][8][9][10]. There are limited data regarding factors underlying disengagement for ALHIV [6,7,[9][10][11].…”

“…Adolescents are particularly affected by disclosure issues, stigma, mental health, family-level factors and transitions in care [4,[6][7][8][9][10]. There are limited data regarding factors underlying disengagement for ALHIV [6,7,[9][10][11].…”

Global emerging resistance in pediatric infections with TB, HIV, and gram-negative pathogens

“…Measurements of adherence in paediatrics are heterogeneous, and, consequently, estimates of adherence may be wide-ranging [36]. Numerous complex barriers to adherence by children and adolescents include family-level factors, socio-economic factors, disclosure issues, stigma, mental health concerns and medication factors [25,[36][37][38][39]. Adherence can be particularly challenging as children reach adolescence and as they transition into adult HIV care services [26,38,40,41].…”

“…Numerous complex barriers to adherence by children and adolescents include family-level factors, socio-economic factors, disclosure issues, stigma, mental health concerns and medication factors [25,[36][37][38][39]. Adherence can be particularly challenging as children reach adolescence and as they transition into adult HIV care services [26,38,40,41]. While it is widely recognised that adolescents are at risk of decreased adherence to ART, systematic reviews have demonstrated that current evidence regarding strategies to improve adherence is limited [36,42,43].…”

“…Interruption in treatment can result in rapid clinical deterioration, particularly in young children or children and adolescents with advanced immune suppression, and it can contribute to HIVDR and a poor clinical outcome. Predominant challenges to retention of children and adolescents can include stigma and disclosure issues, illness or death of family members and severe poverty [38,[46][47][48]. Improving retention in care of vulnerable children and adolescents may require improved social and family support such as peer-or family-level interventions, although evidence is very limited [43,47,49,50].…”