Experiences of Adolescents Living with HIV on Transitioning from Pediatric to Adult HIV Care in Low- and Middle-Income Countries: A Qualitative Evidence Synthesis

Abstract

(1) Background: Adolescents living with HIV (ALHIVs) experience significant challenges in adhering to treatment and remaining engaged in care as they transition from pediatric to adult HIV care programs. The aim of this qualitative evidence synthesis (QES) was to review qualitative studies that describe how ALHIVs experience transition practices in low- and middle-income countries. (2) Methods: The following databases were searched: PubMed, Wiley Library Online, EbscoHost (PsychARTICLES, MEDLINE, Scopus, CINAHL), the WHO database, Google Scholar, and reference mining of the included studies. The inclusion criteria were as follows: ALHIV 10–19 years old, interventions on the transition period or studies describing transition practices, published between 2012 and 2023, conducted in low- and middle-income countries, English language, and qualitative and mixed-method studies. This review adheres to the PRISMA guidelines. CASP and MMAT were used for methodological quality assessment, and GRADE CERQual was used for the confidence in review findings. (3) Results: Seven articles were included in the final review. The five overarching themes described: (1) transition readiness during the pre-transition phase; (2) structural (health systems) barriers and treatment literacy as challenges during the transition period; and (3) provided accounts of successful post-transition experiences and recommendations for improving the transition process (when these were not experienced as positive), while also describing the individual and collective contexts in which transition took place, as they outlined (4) individual (psychological) barriers and the facilitative role that (5) a supportive environment played in the outcome of the transition process. There was a high level of confidence in transition readiness, while the other themes were assessed as having moderate confidence due to methodological limitations and minor concerns about adequacy or relevance. (4) Conclusions: There is a dearth of qualitative studies on the transition experiences of ALHIVs and on how the transition process impacts adherence, retention in care, and mental well-being. We recommend the development of interventions in the form of a guided transition protocol to improve the transition experiences of ALHIVs.

1. Introduction

Adolescents represent approximately 3% of all people living with HIV and 12% of new HIV infections [1,2]. The higher prevalence of HIV amongst adolescents can be attributed to a combination of biological, structural, social, and structural factors [3]. These factors influence HIV care engagement among adolescents, notwithstanding global efforts to attain HIV epidemic control [3]. It is estimated that 80% of adolescents living with HIV (ALHIVs) reside in sub-Saharan Africa [4]. It is approximated that 320,000 ALHIVs who reside in South Africa will transition from pediatric to adult HIV care by 2028 [5]. The high rate of HIV incidence amongst adolescents can be attributed to challenges and experiences particular to the adolescent developmental stage [6]. Adolescence in itself is a transitional period whereby social, cognitive, and physical maturation occurs [6,7,8,9]. As a result of these challenges, ALHIVs are hesitant to engage consistently in HIV care [6,10]. Transitioning to adult HIV care can be regarded as a critical process in the care journey, as it determines long-term health outcomes [6,8]. The healthcare transition is (or should be) a purposeful and planned transition from a child-centered to an adult-centered healthcare pathway [11,12]. This developmental milestone requires the adolescent to have a greater sense of independence and self-management of their healthcare [13].

As a result of the successful roll-out and implementation of ART, pediatric patients living with HIV can now live longer, healthier lives with their lifelong chronic condition [14]. It is evident that ALHIVs represent one of the most rapidly expanding subpopulations within the HIV population, characterizing them as a priority population [2,15]. Adolescence is a period that is accompanied by many barriers, such as structural, psychosocial, and emotional barriers, which are detrimental to optimal transition and impair continuous engagement in care and adherence to ART [4]. Furthermore, this transition requires ALHIVs to manage their own health and illness management, leading to a risk in reduced engagement in care [15]. When ALHIVs do not maintain adequate levels of adherence to ART, this may lead to therapeutic and virological failure, as well as deteriorated health [16,17,18]. This occurs more readily when transition occurs prematurely, or, in other words, when readiness to transition is not assessed, and adequate preparation and guidance are not provided throughout this process of assuming self-responsibility and self-management of their care [5,17,19]. Readiness to transition can be ensured through a proactive and developmental approach [18,19]. It is evident that successful adherence results in improved health outcomes and treatment skills amongst ALHIVs [5,7,19].

Poor transitioning to adult HIV may lead to adverse HIV-related health and well-being outcomes, such as disengagement from care, non-adherence to ART, and virological non-suppression and/or failure [6,20]. The transition period marks the shift from caregiver-led treatment to adult services, where self-management of their own health is required. Poor transitioning in low- and middle-income countries (LMICs) is related to several structural and psychosocial barriers in care [21,22]. It is found that pediatric environments are often experienced as supportive, with close attachments to pediatric healthcare providers [6,22]. Contrastingly, adult HIV services are described as being depersonalized, judgmental, and overburdened environments [6].

Barriers to successful treatment outcomes, particularly during the transition to adult care, include behavioral challenges (limited knowledge of HIV and poor adherence) as well as psychosocial challenges (low self-esteem, isolation, and a lack of adequate social support) [4,5,23,24]. Furthermore, structural barriers complicate this process, through delayed disclosure, the absence of structured transition protocols or guidelines, and inefficient adolescent-friendly services [4,9,12,25,26]. Understanding these complexities is crucial to inform the development of tailored and contextually relevant interventions and healthcare practices that would support the continuity of care, promote autonomy, and, ultimately, improve health outcomes for ALHIVs [4,22,25,27].

Current transition practices in South Africa present another barrier, as they often fail to tailor practices that are geared toward the unique developmental, psychosocial, and clinical needs of ALHIVs, which inevitably leads to poorer engagement in care as well as the inconsistent timing of the transition [20,27].

In LMICs, the transition for ALHIVs is often inadequately addressed. Accordingly, it is imperative to develop a more nuanced understanding of current practices and lived experiences of ALHIVs to more effectively respond to the unique needs of ALHIVs. Healthcare systems within the LMIC context frequently lack structured transition protocols, which leads to mostly clinically informed transfers of care without adequate psychological and social preparation and support [5,28]. In South Africa, ineffective communication between pediatric and adult healthcare providers and a lack of structured transition pathways contribute to poor engagement in care [27,29]. These challenges, therefore, underscore the importance of developing comprehensive, context-specific, and evidence-based transition protocols that effectively address the psychosocial and developmental needs of ALHIVs, ensuring the continuity of care and improved health outcomes. This current study undertakes a qualitative evidence synthesis to enable the comprehensive exploration into the transition practices within LMICs, whilst illuminating the specific needs of ALHIVs during the transition to adult HIV care.

The aim of this review is to synthesize the findings from qualitative studies that describe how ALHIVs in LMICs experience transition practices and how these practices influence their self-reported adherence, engagement in care, and mental wellness.

2. Materials and Methods

2.1. Registration

The study protocol was submitted to the international registry for systematic reviews, PROSPERO (Reference number: CRD42023396459), and the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines for systematic reviews were used as reporting guidelines [30].

2.2. Search Strategy

The following databases were searched, as outlined in the study protocol: PubMed, Wiley Library Online, EBSCOhost (PsychARTICLES, MEDLINE, Scopus, CINAHL), as outlined in the published protocol of this review [30]. The gray literature, such as the WHO database and Google Scholar, was included to identify eligible studies [30]. Finally, reference mining of included articles was conducted to complete the search process [30]. The reviewers developed the search string in consultation with an information specialist at the university to ensure that the most effective search terms were included [30]. The search string that was used for this review can be seen in Box 1 [30]:

Box 1. Proposed search string [30].

(“HIV” OR “AIDS”) AND

(“Adolescent” OR “adolescence” OR “young people” OR “youth” OR “young adults” OR “teen” OR “teenager”) AND

(“antiretroviral therapy” OR “highly active antiretroviral therapy”) AND

(“health care transition” OR “transitional care” OR “transition” OR “transition models” OR “transition intervention” OR “transition practices” OR “transferal” OR “transferring”) AND

(“low-income countries” OR “middle-income countries”)

2.3. Inclusion Criteria and Study Selection

The research question and inclusion criteria were developed with the use of the Sample, Phenomenon of Interest, Design, Evaluation, and Research type (SPIDER) tool to select studies (

Table 1. SPIDER framework for selection of studies [30].

Research Question: What Are ALHIVs’ Experiences with Practices Facilitating Their Transition from Pediatric to Adult ART in Low and Middle-Income Countries? [31]
S Sample	Adolescents living with HIV on ART
PI Phenomenon of Interest	Practices on transitioning from pediatric to adult care
D Design	All forms of qualitative and mixed-method designs, which include qualitative data collection, such as interviews, focus groups, and observations.
E Evaluation	Experiences, engagement in care, adherence, mental wellness, motivation, self-efficacy
R Research Type	Qualitative and mixed methods

) [31].

The inclusion criteria that were considered for this review were as follows: the population is ALHIVs 10–19 years old (as per WHO definition of adolescents), interventions focusing on transition from pediatric to adult HIV care, or studies describing transition practices, studies conducted in LMICs, in the English language, between 2012 and 2023, and, in terms of methods, we included mixed-method studies and qualitative studies.

The review exclusion criteria were as follows: no review studies and randomized control trials were included, and interventions that did not include the adolescent as the direct recipient—in other words, wherein ALHIVs were not the primary population under investigation.

The results from the searches were uploaded to Covidence, where screening took place. In the selection of studies, all three reviewers took part (C.P., T.C., and B.v.W.). One reviewer independently conducted title and abstract screening (C.P.), and two reviewers conducted the full text screening (C.P. and T.C.). All three reviewers ensured a combined effort to resolve disagreements, and this was performed through discussing whether the potential study was suitable for review. The PRISMA diagram (Figure 1) was developed throughout the duration of screening and selection of studies.

2.4. Sampling of Studies

Criterion sampling was employed in the inclusion of studies to ensure that all included studies matched the abovementioned inclusion and exclusion criteria [32]. This guaranteed that all studies included in this review specifically focused on ALHIV, contained qualitative data on transition-related practices and experiences, and explored the implications of transition on adherence, retention in care, mental wellness, motivation, and self-efficacy within LMIC settings. As a purposeful sampling strategy, this technique maximized the likelihood of capturing rich, relevant data to facilitate the attainment of data saturation [32].

2.5. Data Extraction

A data extraction form was designed for this review, tailored to its specifications, and incorporated both contextual and methodological information. This was developed in Covidence after the full-text screening was completed. The form captured key elements such as study context and design, data collection methods, aims and objectives, participant characteristics, and indicators of trustworthiness of the included studies. To ensure the extraction of relevant and accurate information, the data extraction form was piloted prior to its use in this review.

After full text review, eight articles were included for data extraction. However, two studies [17,18] appeared to be from the same project, and, therefore, they were merged for data extraction, while reporting all findings from the two articles.

2.6. Assessment of Individual Study Quality

Methodological quality of the included studies was assessed through the utilization of the Critical Appraisal Skills Program (CASP) tool (for the qualitative studies) and the Mixed Methods Appraisal Tool (MMAT) (for mixed methods studies) [33,34,35]. Confidence in the review findings was assessed with GRADE CERQual as described by Lewin et al. [36]. See Appendix S3 for the results of the assessment. The GRADE CERQual tool was used in a QES to ensure the reviewer’s confidence in each review finding, but it does not assess the methodological quality of the articles. One reviewer (CP) assessed each review finding, as seen in Appendix S3, and two other reviewers (TC and BvW) assisted in checking this assessment. Based on the assessment, the reviewers found moderate to high confidence in the review findings, wherein concerns were primarily due to methodological limitations, adequacy, and relevance of the review findings.

2.7. Data Management, Analysis, and Synthesis

As indicated in the preceding sections, the reviewers uploaded the search results onto Covidence to manage the screening process and data extraction. Furthermore, as this is a qualitative review, thematic analysis was used to analyze the data. To guide analysis and identify key patterns across the data, this review employed thematic synthesis [36]. This method involves the organization of initial codes into descriptive themes, which were further interpreted to generate higher-level analytic themes [37]. Consistent with the approach outlined by Thomas and Harden [36], this review utilized computer-assisted qualitative data analysis software to support the synthesis process. Specifically, this review used Atlas.Ti (version 23) to facilitate the thematic synthesis. The included studies were uploaded to Atlas.Ti, wherein the reviewer (C.P.) coded the findings of each study and subsequently developed subthemes and themes, which were then checked by the other reviewers (T.C. and B.v.W.).

3. Results

The search results, as evidenced in the PRISMA diagram (Figure 1), yielded 72,902 articles after duplicates were removed (58,923) and screened for titles and abstracts by one reviewer (C.P.). Following the screening of titles and abstracts, 27 articles were identified for full-text review. See Figure 1 below for the completed PRISMA diagram.

Table 2 below delineates the characteristics of the included studies. The final number of included studies was seven, of which six studies were carried out in Sub-Saharan Africa (two conducted in Ghana, two in Uganda, one in Tanzania, and one in South Africa) and one in the Dominican Republic. Six studies were qualitative, and one was a mixed-method study. The number of participants for the studies ranged between 10 and 30. None of the studies reported a specific transition intervention; however, the studies sought to explore and describe current transition practices.

Figure 1. PRISMA diagram. * PubMed: 131,521 records; Wiley: 297 records; SCOPUS: 4 records; EBSCOhost: 3 records. ** Duplicate records removed by Covidence. From the study of [38].

Figure 1. PRISMA diagram. * PubMed: 131,521 records; Wiley: 297 records; SCOPUS: 4 records; EBSCOhost: 3 records. ** Duplicate records removed by Covidence. From the study of [38].

As mentioned previously, the CASP tool was used to conduct the quality appraisal of the six qualitative studies. The results of the appraisal can be seen in Appendix S1. All studies demonstrated a clear statement of aims and objectives, and the qualitative methodology was appropriate to address the aims and objectives of all studies. The research design and recruitment strategy were determined as appropriate to address the aims and objectives of the research for all included studies. The chosen data collection methods were appropriate to address the aims and objectives of all the studies. For two articles [39,40], the relationship between the researcher and participants was effectively considered, whereas, for the remaining studies, this was not clearly stated. All studies took ethical considerations into account and had a rigorous data analysis, as well as a clear statement of findings. The studies provided valuable insight that can be applied to further research and to facilitate positive change in the experiences of transitioning to adult care for ALHIVs.

The mixed-method study [5] was appraised using MMAT; the result of the appraisal is presented in Appendix S2. The quality assessment indicated that the study was methodologically sound, with a clear research question, and the collected data addressed the research aims. In a further assessment of the study, there was an adequate rationale for the research, the components of the study were integrated effectively to address the research question, the qualitative and quantitative integrated outputs were adequately interpreted, inconsistencies were addressed, and both the quantitative and qualitative aspects were conducted in a way that adheres to the traditional methods of quantitative and qualitative methodology.

Table 2. Characteristics of included studies.

Author, Year	Title	Country	Study Design	Data Collection Method	Data Analysis Method	Study Population	Number of Participants
Abaka and Nutor 2021 [40]	Transitioning from pediatric to adult care and the HIV care continuum in Ghana: a retrospective study	Ghana	Descriptive exploratory	Semi-structured in-depth interviews and field notes	Thematic content analysis	ALHIVs, 13–18 years	10
Agambire et al., 2022 [41]	Adolescent on the bridge: Transitioning adolescents living with HIV to an adult clinic, in Ghana, to go or not to go?	Ghana	Exploratory	Semi-structured interviews	Thematic analysis	ALHIVs, 13–19 years enrolled in HIV care	13
Ashaba et al., 2022 [18]	Challenges and fears of adolescents and young adults living with HIV facing transition to adult HIV care	Uganda	Descriptive qualitative	Individual, in-depth interviews	Thematic content analysis	ALHIVs 15–19 years, young adults living with HIV, 20–24 years, caregivers, and healthcare providers	10
Katusiime et al., 2013 [42]	Transitioning behaviorally infected HIV-positive young people into adult care: Experiences from the young person’s point of view	Uganda	Retrospective evaluation	Open-ended group discussion	Thematic content analysis	Young people living with HIV YPLHIV 15–24 years	30
Masese et al., 2019 [39]	Challenges and facilitators of transition from adolescent to adult HIV care among young adults living with HIV in Moshi, Tanzania	Tanzania	Descriptive qualitative	In-depth interviews	Grounded theory	Young adults living with HIV. Age not reported	20
Pinzón-Iregui et al., 2017 [14]	“... like because you are a grownup, you do not need help”: Experiences of Transition from Pediatric to Adult Care among Youth with Perinatal HIV Infection, Their Caregivers, and Health Care Providers in the Dominican Republic	Dominican Republic	Exploratory qualitative	Focus groups	Grounded theory and phenomenological approach	Youth with perinatal HIV infection, caregivers, and healthcare providers. Age not reported	15
Zanoni et al., 2021 [5]	‘It was not okay because you leave your friends behind’: A prospective analysis of transition to adult care for adolescents living with perinatally-acquired HIV in South Africa	South Africa	Mixed methods	In-depth qualitative interviews with open-ended questions	Descriptive analysis (quantitative data) and inductive analysis (qualitative data)	Adolescents living with perinatally acquired HIV. Age not reported	30

Table 2. Characteristics of included studies.

Author, Year	Title	Country	Study Design	Data Collection Method	Data Analysis Method	Study Population	Number of Participants
Abaka and Nutor 2021 [40]	Transitioning from pediatric to adult care and the HIV care continuum in Ghana: a retrospective study	Ghana	Descriptive exploratory	Semi-structured in-depth interviews and field notes	Thematic content analysis	ALHIVs, 13–18 years	10
Agambire et al., 2022 [41]	Adolescent on the bridge: Transitioning adolescents living with HIV to an adult clinic, in Ghana, to go or not to go?	Ghana	Exploratory	Semi-structured interviews	Thematic analysis	ALHIVs, 13–19 years enrolled in HIV care	13
Ashaba et al., 2022 [18]	Challenges and fears of adolescents and young adults living with HIV facing transition to adult HIV care	Uganda	Descriptive qualitative	Individual, in-depth interviews	Thematic content analysis	ALHIVs 15–19 years, young adults living with HIV, 20–24 years, caregivers, and healthcare providers	10
Katusiime et al., 2013 [42]	Transitioning behaviorally infected HIV-positive young people into adult care: Experiences from the young person’s point of view	Uganda	Retrospective evaluation	Open-ended group discussion	Thematic content analysis	Young people living with HIV YPLHIV 15–24 years	30
Masese et al., 2019 [39]	Challenges and facilitators of transition from adolescent to adult HIV care among young adults living with HIV in Moshi, Tanzania	Tanzania	Descriptive qualitative	In-depth interviews	Grounded theory	Young adults living with HIV. Age not reported	20
Pinzón-Iregui et al., 2017 [14]	“... like because you are a grownup, you do not need help”: Experiences of Transition from Pediatric to Adult Care among Youth with Perinatal HIV Infection, Their Caregivers, and Health Care Providers in the Dominican Republic	Dominican Republic	Exploratory qualitative	Focus groups	Grounded theory and phenomenological approach	Youth with perinatal HIV infection, caregivers, and healthcare providers. Age not reported	15
Zanoni et al., 2021 [5]	‘It was not okay because you leave your friends behind’: A prospective analysis of transition to adult care for adolescents living with perinatally-acquired HIV in South Africa	South Africa	Mixed methods	In-depth qualitative interviews with open-ended questions	Descriptive analysis (quantitative data) and inductive analysis (qualitative data)	Adolescents living with perinatally acquired HIV. Age not reported	30

3.1. Themes

From the thematic analysis, five main themes and seven subthemes were developed as illustrated in

Table 3. Thematic analysis framework.

Themes	Sub-Themes	Code	Description
Pre-transition	Transition readiness	Felt ready to transition	Participants felt they had the necessary skills to transfer to adult care.
		Informed about the transition	Participants were given sufficient information on what the transition is, what it entails, and what will follow after they transition.
		Not prepared	Participants were not prepared for the transition, not knowing what will happen in the adult clinic.
		Self-efficacy	Participants demonstrated a responsibility over the management of their illness prior to transitioning and took an active role in ensuring their health is optimal.
Transition	Structural barriers	Difficulty accessing clinic visits	Going to the adult clinic would mean that the participants would have to miss school or work, or they would have to miss their appointments to go to school or work. They would also have to go alone, which makes it difficult to attend, and the waiting hours are longer.
		Financial constraints	Participants could not afford services in adult clinics, whereas the pediatric/youth services were free.
	Treatment literacy	Knowledge about treatment	Participants spoke about what they knew about their medication and that they must remain adherent to stay healthy. They also voiced concerns that the adult clinic might not provide them with education and support as the youth/pediatric services did.
		Full disclosure	Participants were not fully informed about their HIV status and the need for treatment until they were told to move to the adult clinic.
		Uninformed about the transition	Participants were told to move to the adult clinic without being explained what the transfer entails by healthcare workers (HCWs), as well as a lack of information on their overall well-being.
Post-transition	Positive adjustment to adult care	Positive experiences of the transition	Participants experienced the transition as positive, having no challenges after transitioning and finding the adult clinics more sufficient and independent.
		Recommendations to improve the transition process/experience	Participants gave possible recommendations that would make the transition easier for them, such as collaboration between HCWs and caregivers and pediatric HCWs and adult HCWs, as well as more adolescent-friendly services.
Individual barriers	Emotional responses to the healthcare transition	Isolation	Participants felt isolated at the adult clinics, that they could not talk to anyone (staff and other patients), but also that they could not tell anyone in their personal lives about their illness.
		Negative feelings about the change to adult services	Participants did not want to move to adult services, fearing they will not obtain the same care as in pediatric services, that it takes longer, and that they have no privacy.
	Psychological impact of living with HIV	Negative feelings about illness	Participants expressed feeling bad about having HIV.
		Stigma	Participants expressed fears of being stigmatized by people at the adult clinics as well as in their personal lives.
Supportive environment	Psychosocial support	Caregiver involvement	Parents/caregivers should be more involved and knowledgeable about their care
		Familial support	Participants expressed how their family members ensured that they took care of themselves, helped them remain adherent, and came to their clinic appointments.
		Peer support	Support the participants experienced from their friends who knew about their HIV status.
	Clinical support	Lack of healthcare worker support at adult services	In the pediatric services, participants felt like the doctors and nurses were their “friends”. Participants in the adult clinic felt like the HCWs did not give them the same type of care and support.

. As the approach of this study was qualitative, the themes were developed inductively. Thus, the themes align with the nuanced experiences of participants. The main themes reflect adolescents’ experiences prior to transitioning to adult HIV care (pre-transition) as well as the imperative factors throughout (transition experiences) and after transitioning (post-transition). Moreover, two themes discussed the barriers and facilitators that influence a successful or unsuccessful transition related to the individual (individual barriers) or outside the individual (supportive environment). The CERQual grading indicated moderate confidence in the findings related to transition experiences, post-transition, individual barriers, and supportive environment. One theme, pre-transition, received a high level of confidence in the findings.

Pre-Transition (High CERQual)

Six studies [5,14,17,39,40,41] reported on adolescent experiences in the pre-transition period and denoted this as transition readiness. They described that adolescents who were informed about the transition process [5,41] and demonstrated self-efficacy [5,14,41] felt ready for transition (“to mature out of pediatric services”). On the other hand, participants who lacked preparation prior to transitioning did not feel ready to transition [17,39,41].

3.2. Transition Experience (Moderate CERQual Confidence)

All seven studies described the experiences of adolescent participants during transition [5,14,18,39,40,41,42]. Negative experiences after the transfer to adult services included difficulty accessing the clinic visits [17] and financial constraints, as transferring involved extra costs such as laboratory tests and new medication [39,41]. In some cases, participants defaulted on clinic visits/appointments due to competing commitments to attend school or work obligations [5,17,39,41,42].

The studies highlighted the role that treatment literacy played in the resolution of the transition process. Knowledge about their treatment improved the participants’ willingness to adhere to it [14,17,40,41]; however, incidences of nondisclosure and being uninformed about the transition impeded successful transition by affecting their motivation and engagement in care [5,14,17,39,40,41,42].

3.3. Post-Transition (Moderate CERQual Confidence)

Three studies described the study participants’ experiences after being transferred to adult HIV care [17,40,42]. Positive experiences included experiencing the adult clinics as more sufficient, less noisy, and allowing for independence and maturity to develop [40,42]. However, the majority of participants experienced the transition as negative and identified the need for sufficient preparation and information to ensure transition readiness [17,40]. Participants recommended that healthcare workers and parents or caregivers should be more involved when adolescents are being transitioned into adult care [18] and that the communication between pediatric and adult service providers should be improved [17]. Since adolescent-friendly services were generally lacking, participants recommended integrated services, e.g., the availability of sexual reproductive health services and dedicated clinic days to promote peer interaction and reduce feelings of isolation [17,40,42].

3.4. Individual Barriers (Moderate CERQual Confidence)

All seven studies described the factors related to the individual or patient-level constraints and challenges that affected transition. These included psychological barriers such as feelings of isolation [5,14,29,41], negative feelings about being transferred to adult services [5,17], negative feelings about living with HIV [41,42], and stigma [17,41,42].

3.5. Supportive Environment (Moderate CERQual Confidence)

Six studies highlighted support as instrumental in the adolescent experiences of transition from pediatric to adult services [5,17,29,41]. Four studies described support from families as essential to adolescents’ overall well-being and adherence to treatment [14,17,39,40]. Further, the lack of support from healthcare workers had a direct impact on their motivation to stay engaged in care [5,18,40,41].

4. Discussion

Transitioning from pediatric to adult HIV is a necessary process for ALHIV to maintain the continuum of care. However, as evidenced in the results of this review, it is a labyrinthine process as adolescents must navigate a new system, their physical and mental health, and various impediments to managing their care [43]. In some cases, participants were not only uninformed about the transfer to adult services but also unaware of their HIV status, which impedes the process of transitioning, wherein a lack of adequate preparation increases their fears regarding the move to adult services [12]. However, participants who demonstrated self-efficacy, such as agency over their disease management, indicated an increased readiness to transition. These positive experiences related to a feeling of independence, wherein participants were satisfied with the adult services. Therefore, it is evident that possessing a sense of readiness to transition, strengthened by self-efficacy, is vital to ensuring that the transition to adult care is successful [43].

A key finding of this review is that there are various impediments to a seamless transition. One of these impediments relates to structural barriers. Access to services becomes difficult for ALHIV; this includes traveling to scheduled clinic visits alone and adult services not accounting for school attendance. These identified challenges indicate a need for services to be more geared towards the specific needs of adolescents. It is particularly important that the compromise between school attendance and healthcare is considered, because it is found to be a barrier to retention in care for ALHIVs [12,23]. Moreover, as this review explored transition practices in low- and middle-income countries, a key barrier to transitioning involved financial constraints. When adolescents are moved to adult care, their ability to ensure that they can take care of healthcare costs is not considered, and this may also be linked to whether adolescents are equipped or ready to be transitioned [26]. Another challenge to ensuring a successful transition wherein adolescents are able to remain adherent to their HIV care is their experiences with their healthcare providers [12,26,44]. Not receiving enough information from the healthcare workers about how the transition worked, and how different the adult services would be, as well as their health when they had transitioned, increased their fears and anxiety about adult services and their overall health. A reduction in motivation to attend clinic visits and maintain adherence to their care was evident [45].

Discussed above are the challenges that participants experienced when they transitioned. However, this review found barriers to adherence, engagement in care, and mental wellness that go beyond the transition process but are interconnected with adolescents’ overall experience of living with HIV and being expected to transition to adult care. As mentioned previously, self-efficacy was found to be an imperative facilitator to transitioning and ensuring positive health outcomes by improving ownership of disease management. The participants highlighted the importance of receiving health education, especially as it increases their motivation to remain adherent [43].

Another facilitator to their health is the psychosocial support that adolescents receive. The support they receive from their family and friends ensures that they remain engaged in their care [43]. For some participants, their family and friends assist in reminding them to take their medication but also serve as emotional support structures, where they can be open about their illness and the fears and anxieties surrounding it.

Feelings of isolation when transitioning, negative feelings about being transferred to adult services, negative feelings about living with HIV, and their perceptions of stigma all play a role in their experience of living with HIV as an adolescent [12,21,43,45]. The findings indicate that the internal processes of adolescents play a major role in how they go about their treatment. Transitioning to adult services appears to be a daunting process for ALHIVs, wherein they often must move to a new facility or have new healthcare providers, which brings up feelings of isolation [23]. This finding further strengthens the need to improve support for adolescents who are transitioning, and the negative feelings towards transitioning may be minimized by reducing the experienced isolation and loss of familiarity by the adolescents. Moreover, research indicates that HIV remains highly stigmatized, and the findings of this review indicate that a perceived stigma (self-stigma) can be found within people living with HIV [21,45].

Thus, whilst we can identify the barriers to transitioning and positive health outcomes, it is important to acknowledge and increase the facilitators that could negate the challenges that ALHIVs face. There is a need to cater services directly to the needs of adolescents, particularly the support that they require—including structural, clinical, or psychosocial—to ensure that the adolescents can remain healthy [46]. The abovementioned factors impacting their health and experience of transitioning are intersecting; to remain healthy and adherent, structural, psychosocial, and individual factors must be addressed.

Participants who have undergone transitioning from pediatric to adult services have provided key insights on factors that could be implemented to facilitate the transition process. Four recommendations came about from the studies addressing post-transition experiences: transition readiness and preparation prior to transitioning, caregiver and healthcare worker involvement, collaboration between pediatric and adult healthcare providers, and peer connections. Firstly, the adolescents emphasized the importance of ensuring that pre-transition adolescents are adequately prepared for the transition. This includes the healthcare worker assessing the adolescent in their transition readiness, ensuring that the adolescent provides informed consent to transitioning, and knowledge about the transition [23,45]. Secondly, the participants discussed that parents/caregivers must be involved with the healthcare workers throughout the transition process as this collaboration can ensure transition readiness and that the adolescent has a maintained level of support [12,26,45]. This may allow the adolescent to feel more secure in their healthcare and not feel isolated. A collaboration between pediatric and adult healthcare providers is recommended as well [12,45,46]. Participants have indicated a feeling of loss when they leave pediatric services and anxiety with the new, unfamiliar environment and healthcare workers. Moreover, if adolescents are connected with the healthcare workers at adult services prior to transitioning, it invites a sense of familiarity when they must transition, further decreasing feelings of isolation and fears of the new environment [45]. Lastly, participants recommend specific clinic days wherein transitioned adolescents attend together, which may be useful as participants have indicated a sense of separation from the adult clinic attendees, and this may decrease the sense of isolation and separation.

The findings relate to the socioecological model of readiness for transition for adolescents and young adults (SMART), which provides a theoretical framework for understanding the transition to adult care for adolescents and young adults with chronic illnesses, wherein the components focus on the relationships between providers, the patients, and the caregivers of the patients [47]. These components can inform transition readiness [5] and relate to the findings of this review on how these factors (structural, psychosocial, and clinical) may influence the transition and, specifically, adherence and retention in care. Furthermore, the biopsychosocial theory also relates to the findings of this review, as it acknowledges the impact of biological, psychological, and social processes on adherence and retention in care [48,49]. Adopting these frameworks would be beneficial to transition practices, interventions, and policies to ensure that adolescents remain adherent and have positive health outcomes through evidence-based practices.

Whilst this synthesis demonstrated qualitative evidence on the transition experiences of ALHIVs [5,14,18,39,40,41,42], there is research demonstrating quantitative evidence as well [44,46,50,51]. However, there is limited research synthesizing the qualitative evidence through a review methodology regarding the experiences and practices surrounding transitioning to adult HIV for ALHIVs. There is thus a clear need to address the specific needs of adolescents, as this may increase positive expectations and experiences about the change to adult services, which has a direct impact on the adherence, retention in care, and overall well-being of ALHIVs. In a systematic review reporting quantitative outcomes, Jegede and van Wyk [52] found that transition practices prioritizing communication from and between healthcare workers, psychological and social support, group transition, mHealth, education, and individualizing care plans produce more effective health outcomes after transitioning to adult care. These findings align with the evidence found in this review; however, this is the first qualitative review to synthesize these findings from the perspective of ALHIVs. The findings of this review were graded as moderate to high confidence; therefore, the evidence would be beneficial towards further research and in developing more effective transition practices.

5. Limitations of This Study

Limitations to this synthesis include the small number of included studies in the review, and not all of the studies contributed to the emergent themes. Furthermore, none of the studies described the experiences of ALHIVs on specific transition interventions, which also highlights the need for further research on existing transition interventions. However, the evidence on the experiences of ALHIVs on transitioning to adult HIV care may contribute to the body of knowledge that may inform further research on transition practices and developing interventions geared towards the transition to adult HIV care.

6. Conclusions

This qualitative evidence synthesis explored the challenges and experiences of ALHIVs when they transition from pediatric to adult care. The findings explicate the challenges prior to, during, and after transitioning to adult care, which impede their treatment outcomes and overall well-being. Moreover, the findings have also yielded positive experiences and factors that facilitate the transition process, which may assist in ensuring a successful transition. There was a high level of confidence in the findings of this synthesis on transition readiness, while the other themes were assessed as having moderate confidence due to methodological limitations and minor concerns about adequacy or relevance. Hence, a noticeable gap exists in qualitative studies focusing on the transition experiences of ALHIVs, particularly in understanding how the intricacies of the transition process influence factors such as adherence, retention in care, and mental well-being. We recommend the development of interventions in the form of a guided transition protocol to improve the transition experiences of ALHIVs, especially in low- and middle-income countries. Moreover, developed transition protocols can be adopted and integrated into adolescent-specific policies to ensure consistent preparation and follow-up during the transition to adult HIV care.