Background
Methods
Criteria for selecting studies for this review
Types of studies
Target participants
Phenomenon of interest
Search methods
Inclusion/exclusion criteria
Data extraction and management
Assessment of risk of bias in studies
Assessment of the quality of included studies
Data analysis
Results
Search results
Description of included studies
Settings
Study designs
Study participants
Interventions
Characteristics of included studies
Findings (Table 1)
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 |
Psychosocial wellbeing of YLWHA
Challenges in schools and larger community
… I came to counseling and the counselor taught me how to take medicine and the consequences … I used to cry then after some time maybe like two months that is when I started accepting myself. Now I feel just like a normal human being, I just take it like a cold … But I still blame my dad coz he knew he was positive yet he let my mother give birth to me and my mother never knew she had the disease (girl) ([57], p7).
Domestic violence
Financial challenges
I lack school fees, food and fare … to come here [to the health clinic] (13 years old) ([54], p2)
Sexual and reproductive health challenges
I have not thought about it [relationships/marriage] yet … you might be afraid of infecting the person you live with. Otherwise, if you tell someone he may reject you … so you count yourself useless. It is better to stay single (female, 15 Dar es Salaam) ([60], p91–92).
The challenge is … they still have no partner. They are not like a couple. So, for them to freely come and say that “me I’m practicing sex” is still an issue (male nursing officer, health center) ([55], p3).
Psychosocial support
If you don’t have friends, you feel lonely and you cannot be happy at all … you walk as if you are not walking. But if you have someone, you feel strong and in case you have any problem, that friend can help you ([47], p5).
After getting money, I will build a house. Then start my own business. I want to be self-employed. I will be the happiest person in the world ([47], p5).
Four studies [47‐49, 57] explored ways in which YLWHA coped with psychosocial challenges of living with HIV/AIDS. Youth reported using a variety of strategies that enabled them to avoid worrying about HIV and death. Some engaged in activities that distracted their thoughts in order to try and forget about being HIV-positive. These included getting busy with academic work or home chores and chatting with friends [48]. Playing games such as football [47, 48], watching TV, and listening to music [48, 57] as well as praying to God to give them strength [57] were other distractors. Non-disclosure or disclosure to few trusted persons as well as lying about frequent illnesses and daily medication were employed to cope with potential stigma and its consequences such as loss of friendship, discrimination, and gossip [48]. To cope with SRH challenges, it was reported that many avoided environments that could cause them to think about sex such as romantic situations or bad peer groups. Some refused any sexual activity and discouraged advances on grounds of religion or by disclosing their HIV status to scare those pursuing them. The use of condoms to avoid unwanted pregnancies and the spread of HIV was also reported by older YLWHA, albeit inconsistent use. A few youths stated masturbation as a way of easing the desires to engage in sex with a partner, but this was unacceptable to most of them [49].The moment they arrive here, we have a friendly language, we receive them with positive attitude … we educate them and give them services for free (female nursing officer, sub-county hospital) ([55], p5)
Home-based care (HBC) intervention
Disclosure
Challenges
With my relatives, it hasn’t affected anything but with other people it has. For example, I can’t be in any intimate relationship with anyone because I don’t know his status and I just can’t tell every guy who wants to be with me that I am HIV positive. I need time and courage to do that (female respondent) ([58], p7)
I would like the providers to keep the secrets of their clients … These service providers have a tendency of broadcasting their client’s problems [HIV/AIDS] that I don’t like at all. They tell and tell. I don’t like it. There should be some confidentiality (girl,) ([61], p139).
Disclosure support
Treatment and health
Challenges
Recently he mentioned … . Grandma, I am tired of all these medicines and I do not feel happy. I told him you will have to continue taking anyway, what else can we do? (Grandmother caregiver) ([54], p5).
When I was going to school, they gave me drugs for three months and I kept them in my bag. As each one had his/her own bed, I had to cover myself with the sheet to swallow the tablets … however, someone tried to steal my stuff by cutting open my bag … when they found my medicine and scattered it on my bed. When other students came back, they asked to whom the drugs belonged and I said I didn’t know. So, you can understand that keeping medicine in dorm is risky (Focus Group) ([62], p4)
Some grown-up children may sometimes cheat that they have taken drugs while they have not, because they are tired and the parents believe that they have already taken the drugs (FGD, female) ([59], p10).
Treatment support
Information about treatment adherence and continuous encouragement from peers, counselors, and health workers enabled YLWHA to adhere to their treatment. Scheduling of clinic visits during school holiday, provision of food and transport to the clinic, short waiting time, and telephone calls and text messages from the clinic were also identified as other ways YLWHA were supported to adhere to treatment [53]. It was reported further that treatment gave some of the YLWHA hope, that one time a cure will be discovered and they would become HIV free [53]. Youth in day schools relied on reminders such as phone alarms and prompts from parents/caregivers to take their medicine. In some instances, reminders from teachers and significant others were utilized. In boarding schools, YLWHA set discrete alarms, some carried pills in their school bags, and some kept medication at the school clinic while some sought permission from school authorities to return to the dormitories during class time in order to take their medicine [48]. Some YLWHA managed to integrate taking medication into their daily activities so that it became part of their daily routine [48].Ooh, the treatment is good, like me I wasn’t like this, before taking this treatment. I had rashes all over my body and I was so thin until my fellow children were avoiding me and said I had AIDS, but when I started taking the medicine, my condition changed and I am now big and healthy [Focus Group Discussion] ([59], p5).