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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)

Uganda/community

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

Disclosure

Adherence

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

Stigma

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)

Kenya/community

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)

Tanzania/community

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)

Tanzania/community

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