Introduction

In South Africa, it is estimated that approximately 320,000 adolescents living with HIV (ALHIV) will transition from pediatric to adult antiretroviral therapy (ART) care by 2028 [1, 2]. ALHIV are expected to undergo transfer from pediatric to adult HIV care around the ages of 10–13 in South Africa [3, 4]. This transfer, known as transition, involves the planned movement from a pediatric clinic or facility to a general, adult facility where all people are seen by the same staff at the same time [5]. This transition process can be conceptualized as a shift from caregiver-led treatment to autonomous treatment-taking and care [6]. Maturo et al. [7] understand transition as the purposeful and planned transition of adolescents with chronic medical conditions from child-centered to adult-centered healthcare. Wiener et al. [8] explain that adult-centered healthcare is characterized by being independently monitored, whereas in pediatric settings the care is interdisciplinary and involves a closer relationship with the pediatric healthcare providers.

Pediatric patients living with HIV are surviving and living longer lives as a result of the implementation of ART [9]. As they are living into adulthood with the condition, consistent lifelong treatment is required [9]. Adolescents and young adults living with HIV are the fastest growing groups within the HIV population [10]. The adolescent period- ages 10–19 years (as defined by the World Health Organization)- is accompanied by barriers that challenge the transition process, and bedevil persistent adherence to ART and engagement in care. Adolescents experience marked changes, including physical, cognitive and emotional. as they develop [8, 9]. The transition process involves ALHIV taking charge of their own health and disease management which raises challenges for their engagement in care [10]. Wiener et al. [8] discuss that ALHIV who do not maintain adequate levels of adherence to ART, may experience therapeutic failure and deteriorated health, and this occur more readily when they transition prematurely–i.e., before they are ready or not adequately prepared or guided in the process. This means that they are required to presume self-responsibility for their health condition, resulting in failure of their care [8]. To achieve readiness to transition, ALHIV require a proactive and developmental approach particularly as adolescence is characterized by pervasive changes. It is well-documented that successful transition improves health outcomes and treatment skills among adolescents [11].

ALHIV have the lowest rates of retention and adherence, increasing the risk of morbidity and mortality [12]. Barriers impacting this include changes in treatment providers, treatment impositions with school, increasing responsibilities, stigma related to disclosure of HIV status, and lack of supervision [2]. Provider-related and system-related barriers include a lack of knowledge about transitioning, a lack of adolescent-centered transition protocols and a lack of implementation of adolescent-friendly services [13]. It is imperative to ensure ALHIV remain in care up into adulthood. Thus, there is a need to understand the transition to the adult care process and its outcomes and the quality of transition processes and services [14].

ALHIV in low- and middle-income countries are at risk of developmental, psychosocial, and comorbidity issues, making them a particularly vulnerable group [10]. In their review of the specific needs and challenges adolescents and young adults living with HIV transitioning to adult care face in Sub-Saharan Africa, Dahourou et al. [10] found that there are very limited data on ALHIV transitioning and their outcomes which reflects that transition of care is not a developed component of care in middle to low resource settings. Managing transition becomes particularly challenging in low-resource contexts as their healthcare systems are not adapted to the specific structural needs and the needs of ALHIV it requires to facilitate successful transition. Kung et al. [15] found that in South Africa, a middle-income country with huge discrepancies between low and high resourced settings, a lack of structure and ineffective communication between pediatric and adult health care providers is a major barrier.

Moreover, as mentioned previously, the change to adult care can be experienced as intimidating, and this can lead to the adolescent being non-adherent to their medication and clinic visits [7]. The existing barriers to successful transition results in treatment delay and lack of retention in healthcare, which inadvertently affects a worsening of immunological recovery, unsuppressed viral load, decreased quality of life in adolescents, and increased mortality [3]. A further consequence of ineffective transition leads not only to therapeutic failure and deteriorating health but can also result in multi-drug resistant HIV which can be transmitted to others [8]. Ineffective transition does not only have a negative impact on physical health, but also on the psychosocial factors that come with being diagnosed with HIV [16].

There is a need to garner an understanding of existing transition practices which address the specific needs of adolescents and is optimized to their requirements and available resources within a low- or middle-income country context [17, 18]. In higher income countries, the transition to adult care is often specialized care, whereas in lower income regions such as in Sub-Saharan Africa, it is not specialized, demonstrating the lack of transition practices tailored to ALHIV [19]. To assist this transition process, a program that is adolescent-friendly and collaborative (with healthcare providers and caregivers) where effective communication is emphasized is necessary [6, 11]. There is also a lack of written protocols to inform evidence-based and well-established transition guidelines [20]. An investigation of existing practices will garner a deeper understanding of the specific barriers that exist for ALHIV, in low- and middle-income countries, which will ultimately improve treatment outcomes. Informed and evidence-based public health approaches should be implemented to develop effective transition protocols, particularly in low-resource, high-burden settings [20]. A qualitative evidence synthesis would therefore be beneficial as it allows a greater investigation of the existing transition experiences and the specific needs of ALHIV who are transitioning to adult HIV care.

Methods and analysis

Inclusion criteria

Types of studies.

This review will include all qualitative and mixed method studies which will facilitate a deeper understanding of the experiences of ALHIV on transitioning from pediatric to adult HIV care. The review will specifically look at studies conducted in low- and middle-income countries. The included studies must be presented in the English language. Table 1 conveys the Sample, Phenomenon of interest, Design, Evaluation, and Research type (SPIDER) tool utilized in qualitative evidence syntheses to define research questions and search terms.

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Table 1. SPIDER framework for selection of studies.

https://doi.org/10.1371/journal.pone.0296184.t001

Topic of interest.

The topic of interest of this review is experiences of ALHIV on ART who are transitioning from pediatric to adult HIV care.

Types of participants.

The review will investigate the experiences ALHIV on ART aged 10–19 who are expected to or are experiencing the transition from pediatric to adult care. We will include studies that underline the experiences of adolescents and exclude studies that solely focus on the perspectives and experiences of healthcare providers.

Types of interventions.

Studies that focus on the transition period (the period where adolescents are changing from pediatric to adult HIV care).

Time frame.

This review will include studies that were not published between 2010–2023 to ensure recent and relevant findings are included.

Supporting information