Table 3 Description of studies included in the qualitative synthesis (N = 30). These studies examined lived experiences related to wellbeing or mental health among YPLHIV in SSA

(Bernays et al., 2017)

Low income (Eastern)

Uganda, UK, Ireland, USA

Urban (Kampala)

Scaled-up ART (2011–2015)

To investigate young people’s perspectives on the social and relational challenges encountered in treatment adherence

▪ YPLHIV-Ugandan sample (n = 26, 11–22 yrs., mean age 16, F = 14, M = 12)

Healthcare facility (Convenience and purposive)

• 26 IDIs, 2 follow-up IDIs (3 IDIs per participant), semi-structured

• Thematic analysis, using a grounded approach and systematic case comparison

(Dusabe-Richards et al., 2016)

Low income (Eastern)

Uganda

Rural

(South-Western, Kalungu district)

Scaled-up ART (2011–2012)

To understand the communication challenges of disclosure and its aftermath within these relationships from the dual perspectives of the older carer and the HIV positive child in their care

▪ YPLHIV (n = 18, 13–17 yrs., F = 8, M = 10

▪ Older caregivers (n = 18)

Healthcare facility (Convenience)

• 8 IDIs YPLHIV, 18 IDIs caregivers, semi-structured

• Thematic analysis

(Inzaule et al., 2016)

Low income (Eastern)

Uganda

Urban (Kampala, Fort Portal, Mbale)

Scaled-up ART (May-Aug 2015)

To assess the challenges to long-term adherence in adolescents and adults in three regional HIV treatment centres in Uganda

▪ Expert adolescent clients (n = 5, age-NR, sex-NR);

▪ HCWs (n = 28)

Healthcare facility (Purposive)

• 24 IDIs, 2 FGDs, semi-structured

• Thematic analysis

(Kajubi et al., 2016)

Low income (Eastern)

Uganda

Coastal (Jinja district-Lake Victoria)

Expanded ART (Nov 2011-Dec 2012)

To explore the implications of different family constellations for caregiving and communication with children on ART

▪ YPLHIV (n = 29; 8–17 yrs., mean age 12 yrs., F = 16, M = 13)

Healthcare facility (Purposive)

• 29 Participant observations with follow-up for 12 months, and 29 IDIs, semi-structured

• Thematic analysis

(Knizek et al., 2017)

Low income (Eastern)

Uganda

Mixed-urban and semi-urban/rural (Kampala, Masaka)

Scaled-up ART (Jul-Nov 2015)

To investigate both the protective and the risk factors in HIV-infected adolescents’ care environment in order to understand what might contribute to negative outcomes and what might provide a protective buffer against harmful life events

▪ YPLHIV (n = 21, 12–17 yrs., mean age 14.6 yrs., F = 12, M = 9)

Healthcare facility (Convenience and purposively sampled)

• 21 IDIs with vignettes, semi-structured

• Phenomenological approach

(Kyaddondo et al., 2013)

Low income (Eastern)

Uganda

Mixed-urban, peri-urban, rural (Kampala, Mpigi, and Soroti districts)

Expanded ART (May 2008-Sept 2009)

To examine the moral dilemmas and pragmatic incentives surrounding disclosure of HIV status in contemporary Uganda

▪ PLHIV (n = 12, 6 aged 18–24 yrs., F=NR, M = NR)

Healthcare facility (Convenience)

• 12 IDIs (6 YPLHIV), 2 FGDs (YPLHIV NR), 6 key informant interviews

• Method of analysis NR

(Loos et al., 2013)

Low income (Eastern)

Uganda

Mixed- urban and rural (Kampala, Kisumu, Kamito and Wagai)

Expanded ART (Jul-Nov 2009)

To assess the impact of HIV and related contextual conditions on identity formation of adolescents living with HIV/AIDS (ALH) in the domains of physical, cognitive, social, and sexual development

▪ YPLHIV (n = 119,10–19 yrs., mean age 13.5 yrs., F = 64, M = 55)

▪ Caregivers (n = 6)

▪ HCWs (n = 53)

Healthcare facility (Convenience)

• 16 FGDs (YPLHIV, stratified by age and sex- 10-12, 13–15, 16–19 yrs.); 6 FGDs (caregivers), 6 FGDs (HCWs), semi-structured

• Thematic analysis

(Mathur et al., 2016)

Low income (Eastern)

Uganda

Rural (Rakai)

Expanded ART (Jun 2010-Jul 2011)

To examine relationship and life events to hopefully describe some of the circumstances that influenced young men’s HIV vulnerability and acquisition

▪ YPLHIV and their HIV-negative partners (n = 30, 15–24 yrs., mean age 22 yrs., F = 0, M = 30)

Community (Purposive)

• 30 IDIs- life history interviews, semi-structured

• Thematic analysis

(Matovu et al., 2012)

Low income (Eastern)

Uganda

Urban (Kampala)

Expanded ART (Jan-Feb 2009)

To explore how young women with HIV/AIDS in Uganda experience the influence of their everyday

life occupations on adherence to HAART after more than 1 year on the medication

▪ YPLHIV (n = 6, 16–20 yrs., F = 6, M = 0)

Healthcare facility (Purposive)

• 6 narratives, 2 interviews per participant conducted over 1 month, semi-structured

• Thematic analysis

(Mutumba et al., 2015)

Low income (Eastern)

Uganda

Urban (Kampala)

Scaled-up ART (Aug-Nov 2011)

To identify the psychosocial challenges and coping strategies among perinatal HIV-infected adolescents in Uganda

▪ YPLHIV (n = 38, 12–19 yrs., mean age 16.9 yrs., F = 20, M = 18)

Healthcare facility- clinical research centre (Purposive)

• 38 IDIs, semi-structured

• Thematic analysis- grounded in a phenomenological approach

(Siu et al., 2012)

Low income (Eastern)

Uganda

Urban (Kampala)

Expanded ART (May-Jun 2009)

To describe HIV serostatus and treatment disclosure practices and concerns from the perspective of YPLHA in Uganda, exploring their satisfaction with current norms around HIV serostatus and treatment disclosure- examines disclosure and lived experiences

▪ YPLHIV (N = 20, 15–23 yrs., median age 20 yrs., F = 10. M = 10)

Healthcare facility (Purposive)

• 20 IDIs, 2 FGDs (sex-disaggregated), field notes, semi-structured

• Thematic analysis

(Mattes, 2014)

Low income (Eastern)

Tanzania

Coastal (North-eastern, Tanga city)

Expanded ART (Sept 2008-Sept 2011)

To compare the national guidelines’ imaginary versions of HIV disclosure and treatment management with the lived realities of paediatric HIV management in a specific north-eastern Tanzanian Care and Treatment Centre (CTC) and in affected children’s social environments

▪ YPLHIV (n = 13, 9–19 yrs., F = 5, M = 8)

▪ Caregivers (n = 11)

Healthcare facility (Convenience)

• 13 IDIs with thematic drawings, participant observations (YPLHIV); Caregivers (NR), semi-structured

• Grounded theory approach

(Abubakar et al., 2016)

Lower middle income (Eastern)

Kenya

Coastal (Kilifi)

Scaled-up ART (2012–2013)

To investigate the experiences and challenges of HIV infected adolescents at the Kenyan coast

▪ YPLHIV (n = 12, 12–17 yrs., mean age 14.5 yrs., F = 3, M = 9);

▪ HIV uninfected (n = 7, 12–17 yrs., mean age = 15 yrs., F = 5, M = 2);

▪ Caregivers (n = 11)

▪ HCWs& CHWs (n = 8)

▪ Educators (n = 6)

Healthcare facility- YPLHIV, caregivers, HCWs, CHWs; Community-HIV uninfected, Secondary schools- educators

(sampling strategy = NR)

• 30 KIIs, semi-structured

• Framework approach

(Adegoke and Steyn, 2017)

Lower middle income (Western)

Nigeria

Urban (Ibadan city- Oyo state)

Scaled-up ART (2013)

To explore the experiences of Yoruba adolescent girls living with HIV, particularly factors contributing to their resilience

▪ YPLHIV (n = 5, 20 yrs., mean ag 20 yrs., F = 5, M = 0)

Community NGO (Purposive)

• 5 Photo-voice coupled with narratives (participatory action research)

• Secondary inductive content analysis

(Campbell et al., 2012)

Low middle income (Southern)

Zimbabwe

Rural (Manicaland)

Expanded ART (Oct 2009-Mar 2010)

To investigate the social landscape of children’s adherence in rural Zimbabwe through

▪ Caregivers (n = 40)

▪ Nurses (n = 25)

Healthcare facility: (snowball, self-selected informants, typical case -caregivers, convenience-nurses)

• 39 IDIs, 3 FGDs

• Thematic network analysis

(Lypen et al., 2015)

Lower middle income (Eastern)

Kenya

Urban (informal settlement) (Kibera- Nairobi)

Expanded ART *(NR)

To better understand the complex social support systems among these youth as well as this support’s influence on their HIV management and related coping mechanisms

▪ YPLHIV (n = 53, 18–27 yrs., mean age 22.8, F = 26, M = 27)

Healthcare facility (Modified respondent driven sampling)

• 6 FGDs (stratified by sex)

• Phenomenological approach

(Mburu et al., 2014)

Lower middle income (Southern)

Zambia

Mixed- rural and urban (Kalomo, Kitwe, Lusaka)

Expanded ART (Apr-Dec 2010)

To document the experiences of adolescents living with HIV with regard to disclosure, specifically addressing: adolescents who were previously unaware of their HIV-positive status being told about it by their parents, and adolescents who know about their HIV-positive status telling others about it

▪ YPLHIV (n = 58, 10–19 yrs., mean age 16.8 yrs., F = 29, M = 29)

▪ Caregivers (n = 21)

▪ HCWs (n = 14)

Healthcare facility, community and youth centres (Convenience)

• 8 FGDs, 58 IDIs (YPLHIV); 2 FGDs (caregivers); 3 FGDs, 14 IDIs (HCWs), semi-structured

• Thematic analysis

(Shabalala et al., 2016)

Lower middle income (Southern)

eSwatini (formerly Swaziland)

Mixed- 1 rural, 1 urban (Manzini region)

Scaled-up ART (Jul 2012-Dec 2013)

To explore the meaning of the family as it applies to Swazi adolescents’ everyday life

▪ YPLHIV (n = 13, 12–19 yrs., mean age 13.6 yrs., F = 5, M = 8)

Healthcare facility (Convenience)

• 13 IDIs (YPLHIV), FGDs (n = NR), KIIs (n = NR), semi-structured

• Thematic analysis using an inductive approach

(Mackworth-Young et al., 2017)

Lower middle income (Southern)

Zambia

Urban (Lusaka)

Scaled-up ART (Jan-Apr 2015)

To explore the experiences of adolescent girls growing up with HIV in Lusaka, Zambia

▪ YPLHIV (n = 24, 15–18), F = 24, M = 0)

Healthcare facility (Convenience)

• 4 participatory workshops (used concept mapping, collages and vignettes); 34 IDIs- 17 interviewed twice, used network tools

• Thematic analysis using a grounded theory approach

(Goudge et al., 2009)

Upper middle income (Southern)

South Africa

Urban (Gauteng province)

ART introduction (2006–2008)

To document the diverse journeys of people living with HIV after the national roll-out of ARV treatment, through ill health, testing, disclosure, and treatment, and their responses to stigma

▪ PLHIV (n = 5, 20–54 yrs., n = 1 20–24 yrs., F = 3, M = 2)

Healthcare facility (Random from an existing survey)

• IDIs with narratives, interviewed twice over 6 months, semi-structured

• Narrative approach

(Li et al., 2010)

Upper middle income (Southern)

South Africa

Urban (Tygerberg, Western Cape)

Expanded ART (2009)

To explore the experiences and needs of a group of adolescents living with HIV in Cape Town, South Africa

▪ YPLHIV (n = 26, 7–15 yrs., mean age 12.5 yrs., F = 10, M = 16)

Healthcare facility (Convenience)

• 4 FGDs, 26 IDIs, used photographs and pictorial messages, semi-structured

• Thematic analysis

(Midtbo et al., 2012)

Upper-middle income, low income (Southern, Eastern)

Botswana, Tanzania

Mixed-Urban and rural

Scaled-up ART (Jun-Sept 2011)

To understand and identify the pathways between HIV-status disclosure, ART, and children’s psychosocial wellbeing, including from the perspective of adolescents themselves

▪ YPLHIV (n = 28, 12–20 yrs., F = 17, M = 11);

▪ HCWs (n = 3)

Community NGO, hospital (Purposive)

• 2 FGDS, 28 IDIs (YPLHIV); 3 IDIs (HCWs), participant observations, semi-structured

• Thematic analysis

(Plattner and Meiring, 2006)

Upper middle income (Southern)

Namibia

Urban (Windhoek)

ART introduction (2003)

To better understand the psychological coping processes from the perspectives of infected people

▪ PLHIV (n = 10, 20–48 yrs., F = 8, M = 2)

Community NGO (Convenience)

• 10 IDIs, semi-structured

• Circular deconstruction method

(Jena, 2014)

Upper middle income (Southern)

South Africa

Urban (Eastern Cape-Port Elizabeth)

Scaled-up ART (Nov 2013)

To explore the lived experiences of adolescents living with vertically acquired HIV

▪ YPLHIV (n = 6, 16–17 yrs., F = 4, M = 2, all vertically HIV-infected)

Healthcare facility (Purposive)

• 6 IDIs- semi-structured

• Thematic analysis

(Petersen et al., 2010)

Upper middle income (Southern)

South Africa

Urban (KwaZulu-Natal-Durban)

Expanded ART

(2008)

To examine

the psychosocial challenges and protective factors for

adolescents and their caregivers affected by paediatric

HIV within the sociocultural context of South Africa

▪ YPLHIV (n = 25, 14–16 yrs. F=NR, M = NR)

▪ Caregivers n-15)

Healthcare facility (Purposive)

• 25 IDIs

• Thematic analysis

(Pienaar and Visser, 2012)

Upper middle income (Southern)

South Africa

Urban (Gauteng-Pretoria)

Expanded ART

(2010)

To describe the experiences

of the adolescent who live with HIV and undergo chronic disease management at the Kalafong Paediatric HIV clinic, so as to gain an understanding of the meanings they

attribute to their experiences of HIV that informs their identities

▪ YPLHIV (n = 6, 13–17 yrs., F = 3, M = 3)

Healthcare facility (Purposive)

• 6 IDIs with follow-up interviews-semi-structured with drawings and storytelling

• Narrative analysis

(Rosenbaum, 2017)

Upper middle income (Southern)

South Africa

Peri-urban (Katlehong Township- Gauteng province)

Scaled-up ART* (NR)

To develop a cultural understanding of how young people living with HIV effectively cope with the adversities that they face and the social ecological resources that contribute to their well-being and resilience

▪ YPLHIV (n = 7, 17–19 yrs., mean age 18 yrs., F = 2, M = 5);

▪ Mental healthcare provides (n = 3)

Clinic support group (Purposive)

• 7 FGDs with photo-voice (YPLHIV), interviews (mental healthcare providers), semi-structured

• Thematic analysis

(Vale et al., 2017)

Upper middle income (Southern)

South Africa

Mixed-rural and peri-urban (Eastern Cape- rural village (Mtembu) and peri-urban informal settlement (Ridgetown))

Scaled-up ART (Aug-Dec 2013, Jan-April 2014)

To understand how tacit inferences about adolescents’ mode of infection contribute to their experiences of HIV-related blame, and their ability to achieve care, in their intimate, everyday settings

▪ YPLHIV (n = 23, 10–19 yrs., F = 23, M = 0);

▪ Caregivers (n = NR)

Community NGO (Purposive)

• 20 IDIs- YPLHIV and mothers, field notes

• Narrative approach

(Woollett et al., 2016)

Upper middle income (Southern)

South Africa

Urban (Johannesburg)

Scaled-up ART (Oct 2014-Nov 2015)

To identify elements of resilience in a group of perinatally infected HIV positive adolescents attending HIV clinics

▪ YPLHIV (N = 25, 13–19 yrs., F = 15, M = 10)

Healthcare facility (Purposive)

• 25 IDIs, semi-structured

• Thematic analysis

(Woollett et al., 2017)

Upper middle income (Southern)

South Africa

Urban (Johannesburg)

Scaled-up ART (Aug 2013- April 2014)

To examine the perceptions of perinatally infected HIV-positive adolescents attending clinics in Johannesburg with respect to their own infection, how they were disclosed to and their mental health state

▪ YPLHIV (n = 25, 13–19 yrs., mean age 16 yrs., F = 15, M = 10)

Healthcare facility (Purposive)

• 25 IDIs, semi-structured

• Thematic analysis