Psychosocial support interventions for improved adherence and retention in ART care for young people living with HIV (10–24 years): a scoping review

Since the introduction of antiretroviral therapy (ART), significant gains have been made in mitigating the impact of the HIV/AIDS pandemic [1]. The increasing effectiveness of and access to ART, along with increasing innovations in ART service delivery have redefined the HIV epidemic from a deadly infectious disease to a chronic, manageable disease [1‐3]. However, poor adherence to treatment and suboptimal retention in care continue to present significant challenges to ending AIDS by 2030 [4].

In 2018, UNAIDS estimated that 1.6 million young people aged 10–24 years were living with HIV [5, 6]. Therefore, young people living with HIV (YPLHIV) constitute a growing and key sub-population of people living with HIV globally. The increasing availability and effectiveness of ART worldwide has resulted in more children and adolescents living longer with HIV [7, 8]. However, it is well-documented that adolescents struggle to initiate, remain engaged, and consistently adhere to ART [9, 10]. While most of the individual, social and health systems barriers associated with ART adherence and retention in care affecting the general population also apply to YPLWH, the latter face greater risks of mental and behavioural health problems, which constitute additional barriers [7, 11, 12]. Psychological risk factors such as anxiety and depressive disorders result from the chronicity of HIV infection, being orphaned, changes of guardianship, and the nature of parental and other adult support [11, 13, 14].

Due to the high levels of anxiety, isolation, depression and suicide ideation reported among YPLWH, studies have recommended psychosocial support for YPLWH in addition to standard ART services to help them adapt and cope with the chronicity and stigma associated with HIV [3, 11, 12, 15‐17]. Psychosocial support interventions are interpersonal or informational activities, strategies or techniques that can target biological, behavioural, cognitive, emotional, interpersonal, social or environmental factors with the aim of improving an individual’s health functioning and mental well-being [18]. To promote ART adherence and retention in care among YPLWH, a comprehensive psychosocial intervention is needed. Such psychosocial support interventions should promote HIV disclosure and communication, support adherence to medication, address feelings of isolation and other emotional-related distress, and the needs associated with emerging sexuality [19, 20].

Interventions such as counselling, cognitive behavioural therapy, and peer support have been applied to improve the mental health and overall well-being of people living with HIV over 18 years with success [21], supporting the role of psychosocial support interventions in promoting adherence and retention in ART care among adults living with HIV [22]. Nevertheless, there is little evidence on the nature and role of psychosocial support for YPLHIV [23]. To this end, in this review, we sought to identify, classify and assess the types and effects of psychosocial support interventions focused on improving adherence and retention in care among YPLHIV on ART in the current existing literature.

Our scoping review was conducted in line with the guidelines proposed by Khan et al. [24] i.e. (1) Framing the question; (2) Identifying relevant publications; (3) Assessing study quality; (4) Summarising the evidence; and (5) Interpreting the findings.

Based on the literature, we developed Boolean phrases that were tested using PubMed. The first literature search was conducted between March and October 2018. Due to unforeseen delays, an updated search using the same Boolean phrases and databases was conducted between October 2019 to March 2020. We searched multiple electronic databases – Scopus, PubMed and EBSCOHost (Academic Search Premier, CINAHL, Psycarticles and Medline) using a standard Boolean combination: “((adolescen* OR teenage* OR young people OR youth) [AND] (psychosocial intervention) [AND] (adherence in antiretroviral therapy OR retention in care))”. In addition, we hand-searched grey literature on mental health among YPLWH and transitioning YPLWH from paediatric to adult care. All titles and abstracts (including conference abstracts) were independently screened by SAV and ZO using the PICOT (Participants, Interventions, Comparisons, Outcomes and Time) mnemonics criteria described in Table 1. Discrepancies were resolved via discussions with a third researcher (FCM). Full texts of potentially relevant articles were retrieved and independently examined by the authors. The reference lists of considered relevant articles were also hand searched to identify further potentially relevant studies. Summaries of the interventions described in each article were retrieved using a standardized form, and key information such as study purpose, nature of intervention described, outcome of intervention and conclusions of each study were extracted.

The acronym PICOT informed the eligibility criteria for inclusion in the scoping review: the population (participants) of focus, types of interventions (and comparisons), and the outcomes of interest. The time relates to the period within which the studies were published [see Table 1 below].

Studies were considered eligible for inclusion in this scoping review if they met the following criteria: (i) Evaluated the effects of or associations between psychosocial support intervention and adherence ART or retention in care or related biomedical outcomes e.g., viral suppression (primary outcomes). (ii) Reported quantitative measures of the primary outcomes. (iii) Targeted or included samples of YPLHIV (10-24) in a mixed sample. (iv) Was published between January 1, 2005 and March 31, 2020. Only articles published in English were considered. There was no restriction by geographical location.

Studies were excluded if they met the following criteria: (i) Adopted a qualitative research design (ii) Were a study protocol, or any form of review or conference abstracts not developed into full manuscripts. (iii) The population deviated from the age range specified. (iv) The intervention did not target the psychosocial needs of the study population. (v) The intervention focused on HIV prevention.

The quality of the included articles was rated as either “poor”, “fair” or “good” by three independent researchers (EO, SAV and ZO), and EO made the final adjudication in cases of non-agreement. The rating of the articles was based on the criteria provided by the NIH-NHLBI Quality Assessment of Systematic Reviews and Meta-Analyses assessment tool [25].

Figure 1 shows the PRISMA diagram illustrating the selection process of the included studies. The literature search resulted in 5244 citations (Fig. 1), which were imported into a reference manager. Electronic (31) and manual (28) deduplication identified 59 duplicates. After screening for potentially relevant titles and abstracts 5162 articles were excluded. After screening full-texts, 17 papers were further excluded because they did not report on the effects of a psychosocial support intervention on adherence and retention in ART for YPLWH. Subsequently, six papers were included in the review of having good quantitative standards. Five studies were considered to be of good methodological quality [27‐31] and one of a fair quality [32].

Our review revealed that individual and peer counselling was a distinctive treatment modality when focusing on improving ART adherence, linkage to care and/or retention in care [27‐32]. While in two instances, individual counselling was carried out using client-centred theory [30] and motivational interviewing [28], one study employed trained community adolescent treatment supporters (CATS) to provide peer to peer support to YPLWH [31]. These techniques have proved to improve adherence and retention in care among YPLWH [22, 31]. Motivational interviewing is confirmed to help people adopt better health behaviours such as helping young people to use condoms more often, and also to reduce viral load [34]. Individual counselling interventions have also been identified as resource-intensive approaches [16] as they are applied at an individual level. Individual-focused counselling are labour-intensive and thus challenging to implement in low and middle-income countries (LMICs). However, equipping low cadre health care workers such as peer lay counsellors or CATS with the necessary skills could prove effective in providing ART care and support tailored to adolescent’s particular needs [35].

Support groups were used in five of the interventions [27‐29, 31, 32], whereby a space (physical and/or psychological) was created for participants to share knowledge, build social capital and expand their support systems. This method of delivering psychosocial support has been found to improve adherence, linkage to care and quality of life, thus constituting a viable treatment option in LMIC where healthcare staff and resources are limited [28]. Peer support has been reported as a major source of social support and information among adolescents in relation to living with HIV [29, 31]. Furthermore, centralising health services for youth have the propensity to reduce barriers to retention and adherence to ART care by providing medical and social services at one central location and reducing the need for navigating complex healthcare systems and improving coordination of services. The enhanced centralised youth service programme attempted to reduce negative health beliefs and misinformation about HIV by supporting patients’ emotional needs and providing youth friendly HIV education to address misconceptions about living with HIV [28, 30, 31]. Youth specific support groups and educational activities offer opportunities for young people to develop support systems, knowledge, and self-management skills.

Family/household-centred services were found in two articles [27, 32], which enhanced family cohesion and communication in both cases. The family/household-centred care approach argues that the family shares the responsibility of caring for the YPLWH [36]. A recent review conducted to explore the availability and effectiveness of family/household-focused interventions to improve ART adherence and retention in care found that some of the HIV-related interventions with a household focus were focused on YPLWH, and incorporated aspects of information sharing on HIV; improving communication; stimulating social support and promoting mental health [33]. Furthermore, studies have shown that integrating paediatric and adult services has positive outcomes on adherence and retention in care [37]. Additionally, the VUKA family programme addressed sensitive topics relating to HIV by using a culturally tailored cartoon [27]; such interactive modes of delivering interventions have been found to enable parent-child communication [38].

Appointment cards were used in one of the interventions where calendars and reminder cards helped schedule eligible patients to attend their next appointment on a family clinic day [32]. There is growing evidence from published literature that mHealth as a means of active client follow-up could improve the retention of patients in care through sending of SMS reminders of their appointment dates [39, 40]. The World Health Organization recommend using mobile phone reminders to improve adherence, bearing in mind that the process should be carefully monitored when aimed at adolescents for effective implementation [41]. In addition, it has been argued that adherence interventions adopting a single approach, such as phone call reminders, are less effective compared to multicomponent interventions that mobilise several support strategies and delivery modalities [42], specifically due to lower cell phone network coverage in rural and remote areas in LMICs [43].

Our scoping review identified six studies that reported on the effects of psychosocial interventions on adolescent adherence to ART and retention in care. Despite the growing recognition of the burden of HIV and psychosocial challenges faced by YPLWH, this review indicates that there is a dearth of evidence on psychosocial support interventions aimed at YPLWH. Other authors have shared the same sentiments [44, 45]. Strasser et al. [44] state that evidence-based psychosocial support services for children are currently under-developed and under-resourced, and argue that the current state of affairs need to be addressed and improved. Petersen et al. [45] also identified the need for targeted efficacy-based mental health promotion interventions for children and adolescent HIV populations in South Africa.

Five studies in this review reported increased retention and adherence to ART among adolescents and young people following the administration of an intervention with psychosocial components [27, 28, 30‐32]. A study evaluating the effects of a psychosocial intervention among PLHIV attending clinical care in Estonia reported that the intervention increased the proportion of patients that were optimally adherent [46]. Similarly, a study conducted by Tominari et al. [47] reported that the implementation of mental health services demonstrated a significant increase in retention in care among PLHIV.

Evidence suggests that ART adherence interventions need to adopt long-term and flexible approaches to effectively support adherence behaviour [42]. The study conducted by Wohl et al. [30] reported that a significant dose response trend was observed between retention in care and increasing number of hours in the intervention and increasing number of intervention appointments.

Furthermore, Wohl et al. [30] found that a time-intensive intervention delivered by a non-judgemental and culturally competent peer is effective in engaging participant in consistent ART care. These findings are supported by previous studies, which suggest that intensive interventions are required to produce effective adherence outcomes, while one-time interventions without ongoing educational support may prove inefficient [48]. According to Edwards and Barker [49], developing frameworks for understanding and describing contexts, which incorporate an adaptive approach for intervention implementation and scale-up are necessary to advance HIV/AIDS implementation research and to ensure the effectiveness of an intervention.

We learnt from the scoping review that psychosocial support interventions for YPLWH are feasible and acceptable to participants and healthcare workers. However, more empirical evidence is needed to understand the mechanisms which allow these interventions to work, to improve the availability of services and care for YPLWH. Limited information exists regarding the effectiveness of adherence interventions for YPLWH in LMICs [1]. The findings from the CATS and VUKA programme indicate that psychosocial interventions may be successfully implemented to improve YPLWH adherence to ART in resource limited settings. These findings are supported by a recent study reporting on the effectiveness of teen adherence clubs in Zimbabwe and South Africa [50].

Individual and group counselling including family-centered group counselling and the use of adolescent peer support were distinctive treatment modalities when focusing on improving ART adherence, linkage to care and/or retention in care. However, this review found only six studies that evaluated psychosocial support interventions suggesting that there is dearth of evidence on psychosocial support interventions to improve adherence and retention in ART care amongst young people living with HIV. Where studies exist; methodological quality, target population, and sample size are limited. Future research and programming should seek to address psychosocial support interventions or approaches specifically designed to address the needs of YPLHIV.