A synthesis of dimensions of wellbeing among adolescents and young people living with HIV from Sub-Saharan Africa for measurement in economic evaluation: a qualitative overview of reviews

Abstract

Background

Adolescents and young people living with HIV (AYPLHIV) in sub-Saharan Africa (SSA) face intersecting structural and psychosocial challenges that compromise their wellbeing, yet these realities are poorly captured by generic wellbeing measures used in economic evaluations. This overview of reviews synthesised evidence from SSA to identify key determinants of social wellbeing to inform the co-development of a contextually relevant wellbeing scale suitable for economic evaluations in the region.

Methods

We searched reviews published between January 2000 and September 2023 across ten databases on EBSCOhost, Ovid, and Web of Science. The conduct and reporting of this overview followed the Preferred Reporting Items for Overviews of Reviews guidelines. Eligible reviews included quantitative, qualitative, and mixed-methods studies examining wellbeing or mental health among AYPLHIV aged 10–24 years in SSA. Review quality was assessed using the Joanna Briggs Institute Critical Appraisal Checklist. Data were synthesised thematically, mapped onto Keyes Social Wellbeing framework, and study selection presented with a PRISMA flow diagram.

Results

Sixteen medium-to-high quality reviews were included. South Africa (n = 15) and Uganda (n = 14) were the most represented countries. Most reviews focused on adolescents aged 10–19 years (n = 11). Our analysis identified five recurring themes central to the social wellbeing of AYPLHIV: social support, acceptance and belonging, self-acceptance, aspirations and goals, and coping. These themes aligned with Keyes’ Social Wellbeing model, with social support and acceptance and belonging reflecting social integration, and aspirations and goals reflecting social contribution. Key psychological wellbeing constructs identified included positive relationships, self-acceptance, purpose in life, and environmental mastery.

Conclusions

These domains reflect both personal experiences and structural realities yet remain underrepresented in commonly used wellbeing measures. This is a critical limitation, as economic evaluations often rely on generic instruments that fail to capture what matters most to AYPLHIV in SSA. Future research should develop a wellbeing scale that incorporates these domains, is sensitive to socioeconomic context, and can be collected alongside socioeconomic status indicators. Embedding such a measure into evaluation systems would improve the accuracy, equity, and policy relevance of economic evaluations and ensure that investments reflect AYPLHIV’s lived realities.

Supplementary Information

The online version contains supplementary material available at 10.1186/s12955-026-02487-y.

Introduction

Adolescent wellbeing is increasingly recognised as a global priority, valued not only for its intrinsic importance but also for its far-reaching implications across health, development, and economic domains. Investments in adolescent wellbeing yield a “triple dividend”: improving outcomes now, enhancing future adult health and productivity, and fostering long-term intergenerational benefits [1]. Despite this growing recognition, wellbeing remains under-measured and under-valued in many regions, particularly in SSA, where adolescents face unique and compounding challenges. SSA is home to the world’s youngest population [2, 3], with adolescents forming the broad base of a demographic pyramid [4]. By 2030, adolescents in Africa are projected to comprise 36% of the global adolescent population [5], presenting both a challenge and an opportunity to harness a demographic dividend through strategic investments in health, education, and psychosocial wellbeing [6–8].

AYPLHIV in SSA represent a particularly vulnerable group, with an estimated 2.98 million aged 10–19 years globally, 89% of whom reside in SSA [9]. Their wellbeing is shaped by intersecting structural and proximal challenges, including stigma [10–12], gender inequalities [13], fragmented health services [14, 15], household socio-economic disadvantage [16, 17], material deprivation such as financial precarity and food insecurity [18–20], limited access to education [14], and inadequate psychosocial and family support [13, 21]. These vulnerabilities are further compounded by family dysfunction, bullying [21], and geographic barriers to care [22]. To be meaningful for policy and economic evaluation, wellbeing measures must reflect these lived realities and the collectivist cultural context in which AYPLHIV are embedded.

Existing wellbeing frameworks (including subjective wellbeing (SWB) [23, 24], psychological wellbeing (PWB) [25, 26], and capability wellbeing (CWB) [27–33]) offer valuable insights but often originate from individualistic, high-income country contexts. These tools may not fully capture the relational, structural, and cultural dimensions of wellbeing in SSA. For example, Govindasamy et al. (2020) found that wellbeing among South African adolescents living with and without HIV was most strongly associated with social integration and social contribution [34], underscoring the importance of collective belonging and perceived social value.

This overview of reviews builds on such evidence to identify key determinants of wellbeing for AYPLHIV in SSA, with the goal of informing the co-development of a contextually relevant wellbeing scale suitable for economic evaluations. The study adopts Keyes’ Social Wellbeing (SocWB) framework [35], which includes five interrelated dimensions: social integration, social contribution, social coherence, social actualisation, and social acceptance. These dimensions offer a culturally resonant lens for understanding wellbeing in SSA, where collectivist norms and relational dynamics shape adolescents’ experiences of support, identity, and purpose. Existing wellbeing instruments (e.g. WEMWBS, WHO-5, MHC-SF, KIDSCREEN-27/52, EPOCH, PROMIS Paediatric Wellbeing, Ryff’s PWB/PWB-c, ICECAP-CYP) only partially cover these social dimensions and exhibit limited validation within SSA contexts [36]. Although interest in wellbeing measurement in the Global South is increasing, there remains a notable absence of scales specifically developed or rigorously validated for SSA populations [36]. Advancing contextually grounded measures that reflect locally relevant dimensions is essential to ensure equity in decision-making and to enable economic evaluations that capture what matters most to AYPLHIV in SSA.

Methods

This overview of reviews, conducted in accordance with the Preferred Reporting Items for Overviews of Reviews (PRIOR) guidelines, synthesises evidence at the review level to assess the determinants of wellbeing among AYPLHIV in SSA. Predefined eligibility criteria, structured quality appraisal, and thematic synthesis were applied to ensure transparency and reproducibility. The study selection and screening process is presented in a PRISMA flow diagram, detailing the identification, inclusion, and exclusion of reviews.

Eligibility criteria

We included reviews published between 2000 and September 2023, with at least 50% of study populations residing SSA. This timeline covers key post-ART periods in SSA (i.e. from ART introduction (2000) to scaled-up ART (2011-to-present)). The post-ART period was considered more relevant to this review as the focus of current international HIV policy is on treatment for all people living with HIV [37]. Reviews were excluded if published before 2000, if less than 50% of the study population were AYPLHIV aged 10–24, or if they were not true syntheses(see Table 1). We included AYPLHIV aged 10–24 years to align with global definitions and the South African National Adolescent and Youth Health Policy, which targets this age group for health and wellbeing interventions [38]. Qualitative research in South Africa indicates that wellbeing dimensions and challenges are broadly consistent across this developmental continuum [34], supporting the use of this broader range. Furthermore, recent global analyses extend the definition of adolescence to 24 years, acknowledging ongoing neurodevelopment and comparable wellbeing trajectories throughout this period [39]. No language restrictions were applied. The review followed the PRIOR guidelines [40].

Table 1.

Inclusion and exclusion criteria

Criteria	Inclusion criteria	Exclusion criteria
Article type	• Only reviews (systematic, scoping, narrative, umbrella reviews, etc.) • Peer reviewed	• Non-reviews • Primary research • Clinical trials, medical studies • Studies based on pure life sciences • Letters, opinion pieces, editorials, case studies
Type of reviews	• Quantitative, qualitative, and mixed methods	• No exclusion
Region	• Reviews synthesising information from SSA as per World Bank country classification • Reviews where at least 50% of the countries included in the synthesis are in SSA	• Non SSA countries • Reviews where more than 50% or the articles included are outside of SSA
Population	• AYPLHIV aged 10–24 years • Syntheses where at least 50% of study population are ALYPLHIV	• People over 24 years old • Children younger than 10 years • Syntheses where more than 50% of population are not living with HIV
Period	• 2000 to September 2023	• Reviews conducted before 2000 or that focused on populations prior 2000
Phenomena of interest	• Subjective wellbeing (SWB), psychological wellbeing (PWB), mental health	• Phenomena not focusing on SWB or PWB or mental health
Number of included articles	• More than two articles	• Two or less articles

Information sources

We searched Web of Science, EBSCO Host (including MEDLINE Ultimate, CINAHL Ultimate, Psychology and Behavioural Sciences Collection, and Sociology Source Ultimate), and Ovid (APA PsycInfo, EconLit, Embase, Global Health, and Social Policy and Practice) for reviews published between 2000 and September 2023. This timeframe captures key post-ART periods in SSA, from the introduction of ART (2000) to its scale-up (2011-present).

Search strategy

The search strategy combined subject headings with search terms related to wellbeing and mental health among AYPLHIV (e.g., psychological wellbeing, subjective wellbeing, life satisfaction). To ensure comprehensive coverage of the literature, we also included terms such as “health related quality of life” and “HRQoL,” as these are frequently used interchangeably with wellbeing in adolescent and HIV research, particularly in SSA contexts. The strategy was adapted for each database (see Additional file 2).

Selection process

Search results were imported into EndNote20, de-duplicated, and screened using Rayyan Systematic Review Management Platform. We included quantitative, qualitative, and mixed methods reviews addressing psychological or subjective wellbeing and mental health among AYPLHIV (10–24 years) in SSA (countries based on World Bank classification [41]). Titles were initially screened by SC, followed by independent title and abstract screening by SC and AM using predefined criteria (Table 1), with 94% agreement. Full texts were reviewed by SC, with input from AM and DG to resolve any uncertainties. Consensus was reached on all included reviews.

Data extraction

Data were extracted into an Excel form based on the Preferred Reporting Items for Systematic reviews and Meta-Analyses (PRISMA) [42] and Joanna Briggs Institute (JBI) Checklist for Systematic Reviews and Research Syntheses [43] checklists. We captured review aims, study types, type of data collected, countries, populations, interventions, and wellbeing determinants (see Additional file 3). JN, ELD, and DG quality-checked one-third of the data each. Discrepancies were resolved through discussions between SC, JN, ELD and DG. Original articles were consulted where clarification was needed.

Assessment of quality

SC appraised review quality using the 11 item JBI Checklist [43, 44], with independent verification by JN, ELD, and DG. The checklist was selected for its applicability across review types and its ability to assess bias [43]. Scoring followed standard guidance: items were rated yes (1), no/unclear (0), or not applicable (excluded from the denominator). Where criteria were only partially met, a score of 0.5 was assigned. Total scores determined overall quality, with reviews classified as high (≥ 9), medium (7-8.9), or poor (< 7) quality. We retained poor-quality reviews given their relevance. A criterion was considered poor if unmet in ≥ 25% of reviews (see Additional file 4).

Synthesis

We used a mega-aggregation approach to group review-level data into themes [45]. This approach provides an overview of existing evidence [46, 47] rather than generating new theory. Themes were mapped onto Keyes’ SocWB Model, as earlier research with South African young people identified this framework as better suited for capturing locally relevant aspects of wellbeing compared to alternative models [34].

Results

Study selection

The search yielded 7,056 citations; after removing duplicates, 5,105 titles and abstracts were screened. Of these, 4,942 were excluded for not being knowledge synthesis reviews, lacking relevance, or being medical/laboratory-based. Full texts of 163 reviews were assessed, with 16 meeting inclusion criteria.

Most exclusions were due to study populations not being AYPLHIV, reviews not constituting true evidence syntheses (e.g., reviews of secondary data or descriptive overviews), or insufficient SSA representation (see PRISMA flow diagram in Fig. 1).

Fig. 1.

PRISMA flow diagram of review selection process

Overall characteristics of included reviews

The 16 included reviews, published between 2015 and 2023, covered populations from 20 SSA countries. Thirteen focused solely on SSA [21, 48–59], while three included other low to middle income countries (LMICs) (China, Myanmar, Thailand) and the USA [60–62] (Table 2). South Africa (n = 15), Uganda (n = 14), Kenya (n = 12), and Rwanda (n = 10) were most represented. AYPLHIV ages ranged from 7 to 28, with most reviews focusing on ages 10–19 (n = 6) or 10–24 (n = 4). All reviews addressed dimensions of wellbeing and mental health. Most aimed to explore mental health-related factors [21, 50, 53–55, 57, 60, 61]; others examined sexual and reproductive health [53, 56], wellbeing [49], ART adherence [48], transitioning to adult care [62], school/community challenges [51], lived experiences [52], psychosocial access barriers [58], and risk behaviours [59]. Quality appraisal using the JBI checklist demonstrated strong methodological standards across the included reviews, with most achieving medium to high quality ratings and only minimal evidence of lower quality (see Additional file 4).

Table 2.

Characteristics of included reviews

Author	Aim / objectives	Review type	Types of studies/data of included articles	Countries of original studies	Number of studies included	Description of Interventions / phenomena of interest	Adolescent and young people characteristics (total number & [age range] in years)
Ammon, N., et al., 2018 [48]	To identify factors that enable and impede ART adherence among adolescents living with HIV (ALHIV) in sub-Saharan Africa (SSA).	Systematic review	Qualitative, mixed methods and quantitative	Congo (Democratic Republic), Ghana, Kenya, Rwanda, South Africa, Uganda, Zambia, and Zimbabwe.	11	Factors affecting ART adherence among ALHIV in SSA	n = 3199 [10–19]
Bhana, A., et al., 2020 [60]	To address what has worked and what has not worked to support the mental health of ALHIV or affected by HIV in low and middle-income contexts	Systematic review	Quantitative	China, Ethiopia, Kenya, Myanmar, Rwanda, South Africa, Uganda and Thailand.	16	Family-level and group-based interventions	n = 4133 [10–24]
Bhana, A., et al., 2021 [61]	To explore current evidence-based mental health interventions for adolescents and young adults living with HIV (AYALH) or affected by HIV (AYAAH) to inform evidence-based interventions for this population.	Scoping review	Any research study design	Rwanda, Uganda, Tanzania, Kenya, South Africa, Zimbabwe, China, Myanmar, Thailand, and USA	13	Evidence-based mental health interventions	n = 2474 [10–24]
Dahourou, D. L., et al.,2017 [62]	To identify specific needs and challenges of HIV-infected adolescents and youth as they transition to adult HIV care in sub-Saharan Africa, and to describe existing models of care for transition and outcomes.	Narrative review	Quantitative and qualitative	Botswana, Burkina Faso, Burundi, Ethiopia, Kenya, Lesotho, Malawi, Mozambique, Rwanda, South Africa, Swaziland, Tanzania, Uganda, USA, and Zimbabwe	20#	Barriers, facilitators, expectations and needs associated with transitioning to adult HIV care: the provider’s and adolescent’s points of view	n > 3333 [15–28]
Dessauvagie, A. S., et al., 2020 [21]	To summarise the existing evidence on the prevalence of mental health problems among ALHIV inn SSA and to explore associated sociodemographic, health-related, and community factors.	Systematic review	Quantitative	Kenya, Malawi, Namibia, Rwanda, South Africa, South Nigeria, Uganda, and Zambia	14	Prevalence of mental health challenges among ALHIV	n ~ 3391 [10–19]
Govindasamy, D., et al., 2020 [49]	To identify key dimensions of wellbeing and aligned wellbeing measures among young people living with HIV (YPLHIV) in SSA	Systematic review	Mixed-methods	Botswana, Ethiopia, Kenya, Malawi, Namibia, Nigeria, South Africa, Swaziland, Tanzania, Uganda, Zambia, and Zimbabwe	40	Wellbeing dimensions among young people living with HIV	n = 4169 [15–24]
Haines, C., et al., 2019 [50]	To synthesise existing research about depression in HIV-infected youth in Southern Africa by addressing factors associated with depression in HIV-infected youth and to explore interventions that have been implemented to reduce depression among this population?	Systematic review	Quantitative	Malawi, South Africa, Swaziland, and Zambia	13	Factors associated with depression in HIV-infected youth and interventions to reduce depression	n = 3573 [9–19]
Kimera, E., et al., 2019 [51]	To review evidence on challenges that youth living with HIV/AIDS (YLWHA) experience in schools and larger community, and to explore available support and interventions available for YLWHA in schools and the larger community.	Systematic review	Qualitative	Kenya, Rwanda, Tanzania, and Uganda	16	Challenges faced by YLWHA or support available in schools or communities to enhance the wellbeing of YLWHA	n = 809 [12–19]
Mhungu, A., et al., 2023 [52]	To explore available evidence and map key concepts concerning the everyday life experiences of adolescent girls and young women (AGYW) living with (or affected by) HIV in SSA in the context of patriarchal culture?	Scoping review	Qualitative, quantitative and mixed-methods	Botswana, Ghana, Kenya, Malawi, Nigeria, Rwanda, South Africa, Tanzania, Uganda, Zambia, and Zimbabwe	40	AGYW lived experiences	n range*=5-1519 [15–24]
Musindo, O., et al., 2023 [53]	To identify whether and how interventions targeting adolescent sexual and reproductive health and rights (SRHR) and HIV with a focus on pregnant and parenting adolescents in SSA include mental health components and how these components and their outcomes have been reported in the literature	Scoping review	Quantitative	DRC, Kenya, Nigeria, Rwanda, South Africa, Tanzania, Uganda, Zambia, and Zimbabwe	27	Interventions focusing on HIV and SRHR that contain mental health and psychosocial aspects to them	n range*= 7–44,888 [7–25]
Orth, Z. and B. Van Wyk, 2022 [54]	To conceptualize mental wellness among ALHIV in the African context and consider the critical components for measuring mental wellness [state and behaviour] in ALHIV.	Integrative review	Qualitative, Quantitative and mixed-methods	South Africa and Uganda	17	Definition or explanation of the identified mental wellness concepts and behaviour	n range = 5-702 [10–19]
Poku, O. B., et al., 2023 [55]	To characterize published literature assessing relationships between mental health problems and engagement in each step of the HIV care continuum for ALHIV in SSA.	Scoping review	Qualitative and quantitative	Ghana, Kenya, Malawi, Namibia, Nigeria, Rwanda, South Africa, Uganda, Zambia, and Zimbabwe	34	ALHIV’s mental health problems at multiple steps along the HIV care continuum in sub-Saharan Africa	n ~ 8670 [10–19]
Pretorius, L., et al., 2015 [56]	To understand the scope and impact of interventions targeting YPLHIV to improve SRH-related outcomes in SSA	Comprehensive review	Quantitative, qualitative and mixed methods	DRC, South Africa, Uganda, and Zimbabwe	6	Interventions targeting YPLWH to improve SRH-related outcomes in SSA	n ~ 855 [10–24]
Too, E. K., et al., 2021 [57]	To summarize the available evidence on the prevalence and factors associated with common mental disorders (CMDs) among YPLHIV from SSA.	Systematic review	Quantitative	DRC, Ethiopia, Kenya, Malawi, Nigeria, Rwanda, South Africa, Tanzania, Uganda, and Zambia	31	Prevalence and factors associated with CMDs among YLWH aged 10 to 24 years	n = 9935 [10–24]
Variava, T. and J. Watermeyer, 2023 [58]	To identify, synthesize, and discuss the psychosocial factors that affect ALHIV who are accessing HIV treatment services in South Africa.	Systematic review	Qualitative and quantitative	South Africa	18	Psychosocial factors which affect ALHIV accessing HIV treatment services in South Africa	n = 9776 [10–19]
Zgambo, M., et al., 2018 [59]	To identify risky health behaviours and their associated factors among ALHIV in SSA.	Systematic review	Qualitative, quantitative and mixed methods	Botswana, Côte d’Ivoire, Ghana, Kenya, Malawi, Nigeria, South Africa, Uganda, Zambia, and Zimbabwe	36	Risky health behaviours and their associated factors among ALHIV in sub-Saharan Africa	n = 10 152 [10–19]

^#11 full-text articles, 7 conference abstracts and two unpublished studies; * Number of participants varied across methodologies, hence ranges shown

Analytical themes

Five key themes were identified across reviews as indicative of wellbeing among AYPLHIV: (1) social support; (2) acceptance and belonging; (3) self-acceptance; (4) aspirations and goals; and (5) coping. These themes mapped onto two wellbeing domains in Keyes SocWB model, namely, social integration (social support; acceptance and belonging) and social contribution (aspirations and goals) (see Table 3).

Table 3.

Key themes shaping wellbeing among AYPLHIV mapped onto keyes’ social wellbeing model

Keyes Social Wellbeing Domains	Themes	Themes and thematic elements
1: Social Integration	o Social support	•caregiver support •family support •family connectedness •family communication •financial support • household dynamics (single caregiver, living with relatives, lack of privacy at home, location of home, getting same things as other children in home, feeling safe at home, getting praised at home, household density) •peer support groups •psychosocial support •service provider support •partner support •social network support •information and advice •emotional support •community support •someone to talk to
	o Acceptance and belonging	•acceptance by others •being welcomed •validation •social protection •feeling comforted •feeling to belong •having a safe place in the community •experience of a romantic relationship •feeling valued by family and friends •social interaction •fitting in •feeling normal •stigma
	o Self-acceptance	•self image •self identity •self-esteem •self-awareness •self-worth •physical appearance
2. Social contribution	o Aspirations and goals	•self-efficacy •control of future •educational aspirations •hopes and dreams •future outlook and goals •desire to live longer •self-motivation •marriage •having own family •sense of purpose •social value •employment aspirations
	o Coping	•resignation •religion and faith •seeking distraction •self-motivation •rationalization •positive thinking •having goals for the future •supportive family members and friends • psychosocial support programs

Social support

Social support from caregivers, family, healthcare workers, support groups, and peers was consistently linked to AYPLHIV wellbeing. Positive parenting, caregiver support, and supervision were associated with lower depression [21, 50, 60] and fewer emotional and behavioural difficulties [21]. Caregivers also played a key role in ART adherence [48, 49, 51, 58, 59]. Family environments impacted wellbeing, particularly through lack of instrumental support [21, 51, 58, 59], food insecurity [21, 48–52, 58, 59, 62] and poverty [48, 49, 51, 52, 55], all of which were linked to poor mental health outcomes [49]. Limited transport funds also hindered ART adherence [51, 58, 59]. Other contributing factors included strained family relationships [50, 52, 57], poor family communication [53, 58, 60], and household overcrowding [50, 52, 58]. Peer support facilitated linkage to care and ART adherence [48, 51, 52, 59, 60, 62], offered emotional support, and fostered acceptance [49], contributing to better mental health [49]. Higher social support was associated with lower depressive and anxiety symptoms [50, 55, 57, 60], positive coping [49, 55], and improved ART adherence [51, 59, 60].

Acceptance and belonging

Acceptance and belonging were primarily discussed in relation to barriers to wellbeing. Stigma [21, 48–52, 55, 57–60, 62] and discrimination [51, 52, 55, 58] following HIV status disclosure led AYPLHIV to feel rejected by loved ones and society [21, 48, 49, 51, 62]. Fear of rejection and accidental disclosure worsened mental health [21, 49] and undermined ART adherence [48]. Stigma also discouraged care-seeking outside HIV clinics [61, 63] and hindered transition to adult care [21, 62]. Conversely, support from caregivers, families, health workers, and peers enhanced AYPLHIV’s sense of acceptance and belonging [49, 55].

Self-acceptance

Self-acceptance was one of the most frequently reported themes [21, 48–50, 52–54, 56, 57, 60–62], and often centred on self-concept (i.e. self-image, identity, esteem, awareness, worth, and physical appearance) and was largely shaped by internalised stigma. Reviews highlighted how awareness of HIV status harmed self-image [21, 62], which in turn affected ART adherence [48] and mental health [21, 34]. HIV-related stigma was linked to diminished self-worth [49], while positive self-image was associated with fewer emotional and behavioural difficulties [21] and reduced depressive symptoms [21, 50, 57]. Self-esteem improved with connectedness, personal worth, and a positive self-view [54]. Interventions to promote self-acceptance included family economic strengthening [60, 61], financial empowerment [64], group-based adolescent programmes [60, 61], and community-based approaches [53, 61].

Aspirations and goals

This theme captured AYPLHIV’s hopes for the future [21, 49, 51, 54–56], self-efficacy [50, 52, 54, 57, 58, 60], and educational goals [21, 49, 50, 52, 57, 58]. Aspirations were linked to better mental wellbeing [21, 54] and a desire for respect and success in their communities [51]. Education was seen as a pathway to purpose and social value [49], but stigma, discrimination, and poverty undermined these ambitions [49, 55]. Poverty also limited educational attainment and career prospects [49]. Self-efficacy strengthened resilience and was associated with fewer depressive symptoms [50, 57], but was reduced by orphanhood, household violence, and stigma [60].

Coping

AYPLHIV coped with HIV through family and peer support [49, 54, 55], spirituality [49, 51, 55], and broader social support [55]. Some also relied on negative strategies, including secrecy, lying, isolation, resignation, and distraction-seeking [51, 52, 55, 60]. Supportive family and friends remained key sources of strength in fostering positive coping [54, 55].

Discussion

This overview of reviews synthesised regional evidence on the determinants of social wellbeing for AYPLHIV in SSA. Five interrelated themes emerged, namely social support, acceptance and belonging, self-acceptance, aspirations and goals, and coping. Each theme reflects dimensions of social wellbeing that are underrepresented in existing measurement tools used in economic evaluations. These themes are shaped by a broader structural context characterised by poverty, stigma, gender norms, and limited access to services, which must be considered when developing context-sensitive wellbeing measures. To situate these findings conceptually, our synthesis indicates that Keyes’ SocWB domains of social integration and social contribution predominate in SSA evidence, whereas other domains are rarely observed (Table 3). This conceptual alignment with prior regional research, including work by Govindasamy et al. [34], reinforces the salience of these domains for young people’s wellbeing. In parallel, a recent review highlights that most wellbeing scales (e.g., Warwick-Edinburgh Mental Wellbeing Scale [WEMWBS], WHO-5 Wellbeing Index, and Mental Health Continuum-Short Form [MHC-SF]) have been developed and validated in Western contexts, prioritizing hedonic and eudaimonic constructs over relational and structural determinants [36]. This gap underscores the need for SSA-specific measures that capture the social realities shaping AYPLHIV wellbeing.

Social support

Social support was one of the most frequently reported determinants of social wellbeing in our review. Among AYPLHIV, support from caregivers, peers, and health professionals provided essential emotional, informational, and practical resources, contributing to improved ART adherence, mental health, and self-worth [20, 65–68]. Regional studies consistently emphasise the role of caregiver and community support in fostering social connectedness and reducing psychological distress [69, 70]. However, access to social support is often constrained by poverty, caregiver loss, gender inequities, and under-resourced services [10, 65]. Limited digital access and social exclusion further restrict peer connection, with evidence showing that high connectivity costs, low digital literacy, and inadequate infrastructure in SSA exacerbate isolation and hinder participation in online peer networks [71, 72].

In current wellbeing measures, relational domains are partially covered (e.g., WEMWBS, WHO-5, ICECAP-CYP); however granular SSA determinants such as household dynamics and density, privacy and safety at home, instrumental support (including transport to public health facilities), and community protection are typically under-specified. This risks undervaluing interventions that strengthen caregiver capacity, peer networks, and community-level supports. Aligning with Keyes’ social integration, these supports are decisive for AYPLHIV (Table 3), but most instruments still focus narrowly on peer connectedness and hedonic/eudaimonic states, reflecting limited non-Western validation [36].

Longitudinal qualitative research conducted with adolescents living with HIV in South Africa and Uganda found that social support was deeply relational and shaped by moral expectations and stigma within clinical and familial contexts, influencing both adherence and self-worth [73]. Additional evidence from Uganda and Zimbabwe highlights how young adolescents living with HIV often internalise narrow narratives of illness shaped by clinical discourse and past experiences, which in turn affect their ability to perceive and engage with supportive relationships [74]. Recognising these relational and structural dimensions is essential not only for improving psychosocial outcomes among AYPLHIV but also for accurately valuing interventions in economic evaluations. Current tools often overlook the nuanced determinants of social support in SSA, such as caregiver capacity, community protection, and instrumental resources, leading to potential underestimation of their impact. Developing context-specific wellbeing measures that capture these dimensions for AYPLHIV will enable more equitable resource allocation and ensure that interventions addressing social support are appropriately prioritized in cost-effectiveness analyses.

Acceptance and belonging

Acceptance and a sense of belonging were consistently identified as core dimensions of social wellbeing. AYPLHIV sought acceptance from family, peers, intimate partners, and broader communities, which fostered feelings of value, inclusion, and motivation [20, 75]. These relational dynamics were positively associated with mental health, treatment engagement, and overall wellbeing [76–78]. Yet stigma and discrimination remain pervasive barriers to social inclusion. Qualitative studies document frequent experiences of exclusion, verbal abuse, and negative community attitudes linked to HIV status [79, 80], contributing to poor mental health and reduced ART adherence [81–84].

Acceptance and belonging are central to Keyes’ social integration, but our SSA findings reveal they are profoundly shaped by stigma, discrimination, and the need for validation and safety within families and communities (Table 3). Commonly used wellbeing measures (e.g., WEMWBS and WHO-5) rarely explicitly capture stigma, exclusion, or discrimination; KIDSCREEN domains (peers and social support; school environment) offer some coverage but do not directly assess stigma exposure or community protection. As noted in Zhang et al. [36], conceptual ambiguity and limited non-Western validation further restrict relevance for SSA. There is a pressing need for SSA-specific instruments that incorporate stigma-sensitive domains and community inclusion, ensuring that interventions promoting dignity, inclusion, and social cohesion are fully recognised.

Consistent with these findings, a global Delphi study involving researchers and practitioners across SSA and other LMICs reached consensus on the importance of addressing intersectional stigma and promoting community-led inclusion strategies as societal enablers of HIV wellbeing [85]. Young people in Uganda and Zimbabwe described feeling ‘different’ and morally judged due to their HIV status, which shaped their sense of belonging and limited their ability to form trusting relationships with peers and adults [74]. Embedding items on stigma experiences, validation, and safe community spaces within social wellbeing measures would better reflect intervention impact in SSA contexts [79, 80]. Addressing these dimensions is also crucial for ensuring that interventions promoting inclusion and dignity are adequately considered in economic evaluations through context-specific measures.

Self-acceptance

Self-acceptance, which includes self-image, self-worth, and acceptance of HIV status, was widely reported as a critical component of social wellbeing. This dimension intersects with agency and resilience, which are essential for young people’s ability to engage meaningfully with their social environments [76, 77, 86]. Regional studies highlight how dissatisfaction with physical appearance and internalised stigma negatively affect self-esteem and social participation [87, 88], compounded by cultural expectations and gender norms. Interventions that address stigma and promote body appreciation have been linked to improved self-esteem and reductions in depressive symptoms [89, 90]. A strong sense of self-worth also supports ART adherence and social engagement [91, 92].

Self-acceptance is best framed in Ryff’s PWB model, rather than Keyes’ SocWB framework. In SSA, it is socially mediated by stigma, gender norms, and moralised adherence expectations. Measures such as Ryff’s PWB and Psychological Wellbeing for children (PWB-c) capture self-acceptance and positive relations but seldom address internalised stigma, body image in HIV, or the moral framing of adherence in low-resource settings. Many existing scales continue to prioritise hedonic and eudaimonic aspects of wellbeing over these important contextual determinants [36]. Longitudinal evidence from South Africa and Uganda shows that internalised stigma and moral framing of adherence can erode self-worth, particularly when clinical expectations clash with adolescents’ lived realities [73]. In-depth interviews with adolescents in Zimbabwe and Uganda revealed that many struggled to reconcile their HIV status with a positive self-image, often internalising narratives of shame and abnormality shaped by early illness experiences and adult messaging [74]. Positioning self-acceptance as a core wellbeing domain is essential for interventions that aim to strengthen confidence, reduce internalised stigma, and support identity development among AYPLHIV. Yet, most existing measures overlook these contextual determinants, risking incomplete valuation of programmes that foster resilience and long-term engagement. Incorporating self-acceptance into context-specific tools will ensure economic evaluations more accurately reflect the contribution of interventions that address these deeply relational and structural dimensions.

Aspirations and goals

Aspirations, particularly those related to education, employment, and independence, featured prominently as determinants of social wellbeing. Education was consistently viewed as a pathway to achieving life goals and contributing to family and community welfare [34, 93]. Fostering aspirations enhances life satisfaction and supports adaptive coping and social engagement [94–97]. However, poverty, gender norms, interrupted schooling, and social exclusion often limit adolescents’ ability to realise their aspirations [98]. This mismatch between ambitions and available opportunities can lead to frustration and poorer psychosocial outcomes.

Aspirations and goals align most closely with Keyes’ social contribution, which encompasses purpose, social value, and the ability to contribute to one’s community (Table 3). Existing measures such as ICECAP-CYP (aspiration; identity/choice) and EPOCH (perseverance, optimism) touch on purpose and future orientation, but rarely assess feasibility, specifically how poverty, interrupted schooling, transport costs, and exclusion constrain goal attainment. Instruments that foreground hedonic/eudaimonic aspects [36] risk overlooking the structural barriers shaping trajectory. Economic evaluations that fail to account for these constraints may undervalue interventions that support empowerment, education, and financial inclusion. Regional evidence indicates that education functions as a pathway for social value and future contribution [34, 93], yet poverty, interrupted schooling, and exclusion constrain attainment [98]. Youth in Ethiopia pursued educational and career goals despite structural barriers, using purpose and future orientation as buffers against adversity [99]. Including items on feasibility and opportunity access would allow evaluations to capture agency and empowerment gains alongside optimism [94, 95]. Aspirations and goals underpin purpose and future orientation for AYPLHIV, yet structural barriers often limit their realisation. Current wellbeing measures rarely consider these constraints, risking undervaluation of interventions that expand educational access and pathways to independence. Context-specific tools that capture opportunity and agency would enable economic evaluations to reflect long-term empowerment alongside health outcomes.

Coping

Coping strategies used to manage stigma, illness, and daily stressors emerged as a critical dimension of social wellbeing. In this review, coping did not align with Keyes’ wellbeing domains but rather represented a set of adaptive responses to social isolation and adversity. AYPLHIV often relied on family, peers, and spirituality to navigate psychological and social challenges [34, 100]. Positive coping mechanisms, such as cognitive reframing and seeking social support, were associated with improved emotional wellbeing and ART adherence [101, 102], while maladaptive strategies like secrecy and withdrawal were linked to loneliness and reduced adherence. The capacity to cope was frequently undermined by food insecurity, housing instability, and limited access to psychosocial services.

Several wellbeing scales include domains that partially reflect coping or related constructs. EPOCH covers perseverance and optimism; KIDSCREEN 27/52 include psychological wellbeing and autonomy and parent relations; MHC SF captures emotional wellbeing and positive functioning; and PROMIS Paediatric Wellbeing assesses positive affect and peer relationships. However, these tools rarely address structural deprivation, stigma, faith-based coping, resignation, or programmatic psychosocial support, which were strategies prominent in this review. As a result, they risk underestimating coping capacity in SSA contexts.

Building on this, a systematic review of stigma-related challenges among children and adolescents living with HIV across SSA found that coping was often compromised by disclosure-related anxiety, feelings of abnormality, and social exclusion, highlighting the need for age-specific and context-sensitive interventions [103]. Findings from Ethiopia suggest that youth who maintained a sense of purpose and future orientation were better able to navigate adversity, using aspirations as a psychological buffer against structural hardship [99]. Measurement should therefore link coping capacity to material deprivation, service access, and stigma exposure, ensuring that economic evaluations capture the contribution of interventions that strengthen resilience and reduce stress, and support psychosocial wellbeing [100, 101].

Strengths and limitations

Key strengths of this review include: (1) inclusion of mixed-methods, quantitative, and qualitative reviews, which enabled a broad synthesis of diverse evidence on AYPLHIV wellbeing in SSA; (2) use of an expansive, multidisciplinary definition of wellbeing in the search strategy, allowing for the inclusion of literature from health, psychology, sociology, and economics; (3) quality appraisal using standard guidelines, which enhances the credibility of the findings; and (4) regional focus on SSA, ensuring contextual relevance and attention to structural and cultural influences on wellbeing.

This review was subject to the following limitations: firstly, despite efforts to extract relevant data, selective reporting cannot be ruled out, although this risk was mitigated through iterative consultation and consensus-building. Secondly, restricting the search to peer-reviewed literature may have excluded valuable insights from grey literature, particularly in resource-constrained settings. Thirdly, several included reviews did not appraise the quality of primary studies, limiting confidence in some findings. Fourthly, generalisability is constrained, as most evidence came from a few SSA countries, leaving some regions underrepresented. Both rural and peri-urban settings were included, but their relative representation was unclear, and while the focus was on adolescents aged 10–24 years, some studies included participants outside this range, complicating interpretation.

Finally, while some social wellbeing domains identified in this review, such as social integration and social contribution, may be relevant to broader adolescent populations, our synthesis and recommendations are specifically focused on AYPLHIV in SSA. The unique challenges faced by this group, including stigma, disclosure, and health-related adversity, are not fully addressed by generic wellbeing measures. As such, the generalisability of our findings to other populations may be limited, and our recommendations are intended to inform the development of a condition-specific wellbeing measure tailored to the realities of AYPLHIV in SSA. However, the process and conceptual framework used in this review could inform the adaptation or development of wellbeing measures for other groups experiencing similar structural and relational challenges in SSA or comparable settings. Despite these limitations, this review offers contextually relevant insights for AYPLHIV and highlights priorities for future research and measurement development in this population.

Conclusion

This synthesis identified five key dimensions: social support, acceptance and belonging, self-acceptance, aspirations and goals, and coping, all of which are central to the social wellbeing of AYPLHIV in SSA. These domains reflect both personal experiences and structural realities, yet remain underrepresented in commonly used wellbeing measures. This presents a significant limitation, as economic evaluations often rely on generic instruments that fail to capture these context-specific elements. As a result, interventions that could meaningfully improve social wellbeing may be systematically undervalued. To address this gap, future research should prioritise the development of a wellbeing measure tailored to AYPLHIV in SSA, grounded in social wellbeing. This process should involve qualitative exploration, Delphi consensus-building, and psychometric validation to ensure cultural and contextual relevance. Longitudinal and mixed-methods studies can further strengthen the evidence base by quantifying how these dimensions influence health and economic outcomes over time. Policy frameworks should support the integration of such measures into routine evaluation systems and prioritise investments in interventions that enhance caregiver support, reduce stigma, and promote education and inclusion. By taking these steps, economic evaluations will more accurately reflect equity considerations and ensure that the true value of programs supporting AYPLHIV is recognised in decision-making and resource allocation.

Supplementary Information

Below is the link to the electronic supplementary material.

Abbreviations

AGYW

Adolescent girls and young women

ALHIV

Adolescents living with HIV

ART

Antiretroviral therapy

AYPLHIV

Adolescents and young people living with HIV

CAB

Caregiver advisory board

CMDs

Common mental disorders

CWB

Capability wellbeing

DRC

Democratic Republic of Congo

HRQoL

Health-related quality of life

ICECAP-CYP

ICEpop CAPability measure for Children and Young People

JBI

Joanna Briggs Institute

LMICs

Low- and middle-income countries

MHC-SF

Mental Health Continuum-Short Form

PRIOR

Preferred Reporting Items for Overviews of Reviews

PRISMA

Preferred Reporting Items for Systematic reviews and Meta-Analyses

PWB

Psychological wellbeing

PWBc

Psychological Wellbeing for children

SSA

Sub-Saharan Africa

SocWB

Social wellbeing

SRHR

Sexual and reproductive health and rights

SWB

Subjective wellbeing

WHO-5

World Health Organization-Five Wellbeing Index

WEMWBS

Warwick-Edinburgh Mental Wellbeing Scale

YPLHIV

Young people living with HIV

YLWHA

Youth living with HIV/AIDS

Author contributions

SC acted as main author and first reviewer, contributing to all aspects of the design, protocol, search strategy, screening, data extraction and manuscript writing. DG made substantial contribution to the overview of reviews protocol design. AM completed independent abstract and full-text screening. DG, ELD and JN reviewed full text articles for eligibility and performed independent data extraction of included reviews. DG, ELD and JN reviewed the final manuscript draft. WO made substantial contributions to the overview of reviews data analysis.

Funding

The lead Researcher (SC) was partially supported as a Doctoral Fellow by funding from the South African Medical Research Council (SAMRC) through the South African Population Research Infrastructure Network (SAPRIN) under the SAPRIN nodal PhD fellowships from funding received from the Department of Science, Technology and Innovation (DSTI). The content hereof is the sole responsibility of the authors and does not necessarily represent the official views of the SAMRC or the funders. This work was further supported by the IDRC-CDRI (Women Rise Grant – Grant number 110018–001) and the Health Systems Research Unit (HSRU) seed fund. In addition to the lead author, DG and AM were also funded by the SAMRC, and DG is also funded by the SAMRC/Wits Centre for Health Economics and Decision Science - PRICELESS SA (Grant number 23108).

Data availability

The data extraction tables used and/or analysed during the overview of reviews are available from the corresponding author on reasonable request.

Declarations

Ethics approval and consent to participate

Not applicable.

Consent for publication

Not applicable.

Competing interests

The authors declare no competing interests.