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Table 1 Characteristics of included studies

From: Challenges and support for quality of life of youths living with HIV/AIDS in schools and larger community in East Africa: a systematic review

Study/location/settings Participants Study design Data analysis methods Aim Subthemes Findings
[47] Fournier (2014)
13 HIV-infected and orphaned youths (5 females) 12–18 years, living in a group home Photovoice and FGD Thematic analysis To explore the experience of orphaned, HIV-seropositive children who live in a group home in Semi-urban Western Uganda. Hopes and dreams
Material resources
Social support
Stigma and discrimination
Psychological, emotional and social challenges
Needs, social support, and challenges
[48] Mutumba (2015)
Uganda/clinical research center
38 HIV-positive youths (20 females) 12–19 years Interviews Thematic analysis To identify the psychosocial challenges and coping strategies among perinatal HIV-infected adolescents in Uganda HIV stigma
Coping strategies
Challenges of living with HIV and coping strategies in youths
[49] Bakeera-kitaka (2008)
Uganda/health facility
75 HIV-infected youths (35 females) 11–21 years FGDs Thematic analysis To assess sexual and reproductive health needs and problems as well as determinants of sexual risk taking among young people living with HIV aged 11–21 years attending the pediatric infectious disease clinic in Kampala. Information and misconceptions about sexual and reproductive health Barriers to adopting protective behavior, behavioral skills adopted by youths for protective behavior, health care providers’ perception on sexual reproductive health-related needs of YLWHA
Adolescents’ motivations for adopting protective behaviors
Perceived barriers for adopting protective behaviors
Behavioral skills adopted by adolescents for protective behaviors
Health care providers’ perceptions on SRH-related needs of YPLH
[50] Rana (2015)
Uganda/health facility
a39 HIV-infected youths 14–24 years FGDs Thematic analysis To explore perspectives of youth on the acceptability and feasibility of SMS-based interventions. Feasibility of the Intervention Perceived challenges of the intervention and suggestions for improvement.
Programmatic Challenges and Suggestions
Pathway Mechanisms
[51] Kawuma (2014)
Uganda/medical research centers
26 HIV-positive youths (12 females) 11–13 years, 10 Caregivers, 5 Health workers. Interviews Thematic analysis To examine the reasons for non-adherence to ART among children and why they may not report when they miss their treatment. Not knowing the reasons why, one should take the drugs Reasons for nonadherence, reasons for not disclosing nonadherence.
Lack of food and side-effects
Fear of being seen by others
Lack of time
To protect and maintain relations with carers and healthcare workers
Fear of being scolded
[52] Inzaule (2016)
Uganda/health facility
11 nurses, 9 adherence counselors, 5 medical doctors, 5 expert patients, 3 pharmacists. Interviews and FGDs Thematic analysis To assess challenges to long-term adherence in adolescents and adults in three regional HIV-treatment centers in Uganda. Unstructured treatment holidays Challenges to adherence disaggregated for youths and adults
Delays in disclosing HIV status to perinatally infected children
Diminishing or lack of family support
Perceived and experienced stigma in boarding schools
Declining or lack of clinic support
Temporary migrants and challenges with treatment access
Disclosure in intimate relationships
Treatment-related factors
Staff shortages and missed counseling opportunities
[53] Nabukeera-Barungi (2015)
Uganda/health facilities
a336 HIV-infected youths 10–19 years, 46 Caregivers bMixed methods: qualitative (interviews, key informant interviews and FGDs) and quantitative retrospective record review. Thematic analysis To describe the level and factors associated with adherence to antiretroviral therapy as well as the 1 year retention in care among adolescents in 10 representative disctricts in Uganda. Barriers to adherence to ART Level of adherence, factors associated with adherence and retention in care
Facilitators of adherence and retention in care
[54] Abubakar (2016)
Kenya/medical research center
12 HIV-infected youths (3 females) aged 12–17 years and 7 HIV-uninfected youths (5 females) 12–17 years, Caregivers of HIV-infected youths (n = 11), Community health workers (n = 8), Teachers and education administrators (n = 6) Interviews Thematic analysis To investigate psychosocial challenges faced by HIV infected adolescents on the Kenyan coast. Poverty as a salient challenge for families with HIV Psychosocial challenges
Poor mental and physical health
Confronting a school system that is not responsive to their needs
Partial disclosure to family and peers
Medical adherence
[55] Hagey (2015)
Kenya/health facility
40 health care providers Interviews Thematic analysis To explore barriers and facilitators adolescent females living with HIV face in accessing contraceptive services. Stigma of sexual promiscuity in accessing contraception without a partner Barriers to access contraception and facilitators to contraception
Concerns of negative parental attitudes towards adolescent sexual activity
Discouragement from seeking contraceptive services due to being different from peers
Provider interactions and bias of adolescent sexual activity influence contraceptive services offered
Targeted youth-friendly services encourage adolescents to seek contraceptive services
Ease of accessing contraception through integration of HIV and contraceptive services
[56] Lypen (2015)
53 HIV-infected youths (26 females) 18–27 years. FGD Thematic analysis Tobetter understand the complex support system among HIV-positive youth and related coping mechanisms Types of social support Social support types, sources and their influence on management and coping with HIV
Sources of social support
[57] Gachanja (2015)
Kenya/health facility
7 HIV-infected youths (3 females) and 5 HIV- negative youths (3 females) 12–17 years. Interviews Thematic analysis To explore post-disclosure experiences of children. Acceptance of illness Challenges following disclosure and coping mechanisms
Stigma and discrimination
Medication consumption
Sexual awareness
Coping mechanisms
[58] Ramaiya (2016)
Tanzania/health facility
24 HIV-infected youths (18 females) 13–23 years. Interviews Thematic analysis To identify salient psychosocial and mental health challenges of HIV-positive youth in a resource-poor Tanzanian setting Living with HIV Psychosocial challenges of living with HIV
Domestic and Family Environments
[59] Nyogea (2015)
Tanzania/health facility and community
116 HIV-infected youths (49 females) 2–19 years for the quantitative part,
a35 HIV-infected youths 13–17 years for qualitative part, 21 Caretakers and 2 Health workers
bMixed methods: quantitative cross-sectional and qualitative FGDs and Interviews. Thematic analysis To estimate adherence levels and find the determinants, facilitators and barriers to ART adherence among children and teenagers in rural Tanzania. Facilitators of treatment adherence Adherence levels, determinants of adherence, barriers and facilitators of adherence. Disclosure of HIV status
Treatment adherence barriers
[60] Busza (2013)
14 HIV perinatally infected youths (5 females) 15–19 years, 10 Caregivers and 12 home-based care providers Interviews Thematic analysis To explore how adolescents in Tanzania with HIV experience their nascent sexuality, as part of an evaluation of a home-based care program Postponing sexuality Perceptions of youths living with HIV about sexuality and HIV
Sex, risk, and health
Expectations for the future
[61] Busza (2014)
14 HIV perinatally infected youths (5 females) 15–19 years, 10 Caregivers and 12 home-based care providers FGDs and interviews Thematic analysis To examine the experiences of adolescents living with HIV in Tanzania in order to improve home-based care to better meet their needs Adolescents’ participation in care Perceptions of youths and HBC providers about home-based care
Perceptions of current services
HBC providers’ experiences
[62] Mutwa (2013)
Rwanda/health facility
42 HIV-positive youths (19 females) 12–21 years, 10 Caregivers Interviews, FGDs and role-playing Thematic analysis To understand adherence barriers for Rwandan adolescents Desire to be Healthy Challenges of living with HIV and social support
Stigma and Desire for Privacy
Disclosure of HIV Status
Acceptance, Isolation and Depression
Social Support and Living Situations
Medication and Regimen Issues
  1. FGD focus group discussions
  2. aParticipant not disaggregated by sex
  3. bQuantitative results not reported since they were not targeted findings of this review