Introduction

Adolescents living with HIV comprise nearly 2 million in sub-Saharan Africa (SSA) [1], a region disproportionately affected by the virus. There is mounting evidence indicating adolescent living with HIV are progressively poorly retained in care, have low rates of adherence and viral suppression, with increased mortality and morbidity [1–3]. Vertically infected children are reaching adolescence in large numbers and incident HIV infection is high in this age group, particularly in adolescent girls [4, 5]. These rates are concentrated in SSA where health systems tend to be overburdened and poorly resourced, especially the case in South Africa [6] and where adolescents comprise a sizeable proportion of the population [7]. The health system in Johannesburg is overwhelmed with large numbers of patients, often in excess of healthcare providers; leading to rapid expansion of a range of paraprofessionals being employed to address services delivery gaps [8, 9]. Healthcare systems in SSA will be managing adolescent HIV for decades to come [10], a reality calling for intentional investment to curb onward transmission and viral resistance, and improve maintenance and care for this vulnerable group [11].

Recent systematic reviews have endeavored to unearth the reasons contributing to the poor health outcomes of adolescents living with HIV. Reasons identified include stigma, perceived lack of confidentiality at clinics, poor treatment by healthcare providers, treatment fatigue, ineffective transitioning from pediatric to adult clinics, poor disclosure, and lack of adolescent-friendly services [12–14]. At present there are limited best practices to mitigate these problems [15, 16]. There are currently no national guidelines on how to transition adolescents when they reach adulthood at 18 years or before if they are stable on treatment [17]. There is recognition that adolescence is a challenging developmental period, marked by rapid physiological, psychological, familial and social change [18]. These challenges are compounded for adolescents living with HIV, who tend to have a ‘stacking of odds against them’ in terms of psychological, social and health needs [19, 20]. However, there is also a dearth of evidence of what improves outcomes, particularly under the ‘treat all’ strategy, acknowledging that more comprehensive healthcare is required for this group and further commitment from all who serve them [21]. Differentiated models of care have been proposed to manage adolescent HIV in public health systems, but substantiation on how to implement these well remains imprecise [22, 23]. Specifically, with the scant confirmation from adolescents themselves on what works for them in terms of their HIV care and treatment [24].

Our study sought to address this research gap by asking adolescents living with HIV engaged in care for many years about their recommendations for a more responsive healthcare system in adolescence.

Methods

Results

Please see Table 1 for a description of the sample.

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Table 1. Description of the sample.

https://doi.org/10.1371/journal.pone.0253984.t001

Discussion

Our study highlighted adolescent recommendations for a more effective health system that included advocating for adolescent clinics, recognizing the importance of clinic-based support groups, valuing the influence lay counselors have in providing healthcare to adolescents, improving widespread education of vertical HIV transmission and meaningfully linking the clinic to the community.

Mental health needs of children and adolescents globally do not get the attention and resources required, but are severely underserved in low and middle-income countries (LMICs) [29, 30]. Adolescents living with HIV tend to have mental health challenges that impact negatively on adherence and retention in care [31]. Health systems that appreciate this reality may be more responsive to it. There is growing evidence that clinic-based support groups help retain adolescents living with HIV in care and if managed well, can be taken to scale [14, 32]. Groupwork is a powerful method in reaching young people who tend to enjoy the company of their peers, and in resource-constrained contexts, it is a cost-effective means of intervention. The social component of group treatment (i.e. cohesion, interpersonal learning etc.) is a dominant mechanism through which change occurs [33], facilitating psychoeducational and mental health benefits. Support groups are valuable for education, i.e. facilitating understanding through experiential learning rather than simply providing information. Those that intentionally address some of the mental health difficulties of adolescents living with HIV and that are facilitated by staff grounded in understanding adolescent development and mental health, could mitigate risk, improve health system use and treatment adherence.

Keeping secrets is onerous and burdensome through development, a finding articulated in this study. Young people welcome honest communication with adults who serve them [34]. Social support is particularly appreciated for those struggling through development with prolonged mental health problems, depression and complicated grief being particularly noteworthy for vertically infected youth who are frequently orphaned [2]. Depression and complicated grief are associated with young people’s perceptions and poor understanding of death in epidemic regions, and need to be addressed in psychosocial programming [35]. Acceptance and belonging cannot be underestimated in terms of adolescent identity formation and development especially with vertically infected young people who commonly experience feelings of isolation and rejection [36]. This reality is underscored in our study with participants placing strong emphasis on adolescent clinics and clinic-based support groups for similarly placed adolescents living with HIV.

Many vertically infected children and adolescents live in communities characterized by poverty and exposure to violence [37] as was the case in our sample [31]. Women living with HIV tend to experience higher rates of intimate partner violence [38] and adolescents exposed to this kind of violence show not only poorer mental health outcomes [39], but also have poor virological and immunological outcomes [40] and poorer adherence [41]. In addition, orphaned adolescents are at risk for heightened exposure to physical, emotional and sexual violence [42]. Cumulative exposure to adversity such as violence, abuse and neglect is associated with increased risky sexual behavior amongst vertically infected adolescents in South Africa, leading to higher probable rates of secondary transmission and potential reinfection and resistance to ART [43]. Very few adolescents living with HIV report disclosing their HIV status to their sexual partner [44], possibly on account of the reality of discrimination from peers [45]. Disclosure protects against mental health risks [2] and as our participants describe, is liberating. Having opportunities to practice disclosure is vital for this group and is encouraged in support groups and adolescent clinics.

Adolescents need more reliable and comprehensive information regarding vertical transmission. Our participants had both a lack of understanding of PMTCT and future reproductive health options, as well as unreliable comprehension of how they contracted HIV and pathways to vertical transmission. These findings are similar to others [46] but highlight that many providers may make assumptions that vertically infected adolescents understand vertical transmission when that may not be the case [47]. Having opportunities to fully and repeatedly explain these mechanisms is important and as our study reveals, is strengthened by strong interpersonal relationship with healthcare providers.

Adolescents living with HIV are sexually active and have intentions of parenthood. However, evidence indicates that female adolescents living with HIV rarely discuss pregnancy intentions with family or providers, suggesting a potential fear of being judged for wanting to conceive when living with HIV [48]. Indeed, 16% of all adolescents in South Africa experience pregnancy, many of whom will be or are HIV infected [7]. HIV infected pregnant adolescents show much higher rates of mother-to-child transmission [49] perhaps on account of not fully understanding vertical transmission or the strength of prevention methods such as PMTCT. Another potential contributor is not feeling comfortable in antenatal clinics where adolescents make up a minority of patients. Health providers need to explain modes of transmission and educate adolescents living with HIV regarding family planning and contraception, including routinely screening for fertility intentions and strengthening access to safer conception assistance. Safer conception services, that support the reproductive goals of women living with HIV and their partners, can minimize the risks of HIV transmission through pregnancy, can enhance ART adherence and promote limiting pregnancy attempts until viral suppression can be achieved and maintained [50]. In addition, vertically infected pregnant adolescents are likely to experience poorer adherence on account of depression in the peripartum period [51] indicating that mental health screening and support in this population is prudent.

Effective programming to reduce sexual risk behavior of adolescents living with HIV is essential. Unfortunately, topics such as sexual and reproductive health are taboo and are not easily spoken about in families, thus healthcare environments are positioned to fill this gap with factual and developmentally appropriate information [52]. In addition, evidence shows the manner in which young HIV infected patients want to be engaged in SRH matters is similar to their HIV management, i.e. adolescent-friendly and convenient with improved service quality from clinic staff [53]. Our study also highlights the benefits of investing in male providers to address SRH education and treatment.

Lack of understanding of vertical infection and discrimination towards adolescents living with HIV in society, especially by adults, leads to young people’s distrust of adults and particularly health system personnel [54]. However, in our study, counselors appeared to be trusted to maintain confidentiality, take time to explain things, provided honest and understandable information, and were a constant presence in the clinic that were highly prized. The lay counselors conducted many individual ‘adherence counseling’ sessions with patients but were central in delivering the psychosocial support groups held at the clinic.

Lack of skilled mental health professionals available to intervene and the need to utilize and upskill lay counselors to meet the demand ethically with targeted training and consistent expert supervision [55, 56] is now vital to public health systems. There is expanding proof that lay counselors are able to provide skillful and effective task-sharing interventions locally [57] and our study provides additional support for this.

HIV infected youth have the ability to educate peers, both those uninfected as well as newly infected, as they understand healthcare utilization, the challenges of care and treatment over time, as well as youth difficulties. Adolescent peers have influence over each other, especially those that are marginalized in similar ways. Friendships with peers moderate personal adversity [58], and HIV infected youth with other infected youth in their social networks report being able to accept their diagnosis more easily [59]. Care models that capitalize on this may have influence in retaining adolescents in treatment and impact HIV related stigma in beneficial ways [60]. As such, programs that work with adolescents living with HIV may profit from peer interventions at clinic level in the shape of peer led support groups, peer treatment navigators/counselors for youth (supervised by trained facilitators), and inclusion of young adolescents living with HIV in multidisciplinary teams. Peer educators or counselors located in adult clinics may also help with the transition of stable adolescents from pediatric to adult clinics and keep them retained in care. They may increase adolescent access to testing and timely initiation on treatment. In tandem, these young people would be gaining constructive workplace skills that can be capitalized on as they age into the workforce.

Linking clinic to community through activities such as soccer tournaments and informative productions drives home the positive aspects of health and depathologizes HIV; it was a significant recommendation from this study. Community-based adherence clubs that have shown positive outcomes for adult patients [61] may be equally effective for adolescents, especially if there is a support group component to implementation and if the groups are adolescent only [32].

A positive youth development style to service delivery of adolescents living with HIV is recommended to foster adolescents’ growing autonomy, actively including them in decision making, highlighting their rights and also their responsibilities through positive, respectful and mutually beneficial relationships with service providers [26]. Offering opportunities for adolescents living with HIV to exercise their agency leads to engagement and positive health benefits including accessing their resilience [62]. It also adds another resource available to young people: a responsive and supportive healthcare system. An adolescent’s ability to cope is influenced by the degree to which they are able to connect with their community and negotiate assistance from it thus enabling environments that include their participation lead to optimal coping. As such, the healthcare environment could be actively employed as a coping-enabling social environment for adolescent patients, facilitating opportunities for resilience, and promoting participation as a tactic to cope with adversity [63]. Indeed, recent resilience studies in South Africa have shown perceptions of care are associated with improved help-seeking behaviors from adolescents, suggesting that higher perceptions of physical and psychological ‘caring’ from providers are associated with increased use of formal supports [64]. It seems obvious, but health providers that intentionally build relationships with adolescent patients, especially over time, also improve their resilience.

An interesting outcome from this study was that many adolescents living with HIV recommended linking professionals from adolescent-friendly clinics to schools, highlighting that schools provide an untapped option to spot unreached young people living with HIV, particularly slow-progressors, and connect them to care [65]. However, consent issues obscure access in countries like South Africa with generalized HIV epidemics, where there are elevated rates of AIDS orphans, adolescents are in the custody of numerous caretakers, legal documentation of guardianship is not widespread, and guidelines around consent for HIV testing are wide-ranging, without clear direction on procedure [66].

Another noteworthy finding was the support of dynamic counseling approaches that appeal to the interests and capacities of adolescents. The effectiveness of non-verbal therapies, such as drawing, writing, drama, digital storytelling and photovoice interventions that address mental health and psychosocial issues in this population needs to be rigorously tested and controlled for. A study in Zimbabwe using body-mapping, an art therapy technique, shows value in treatment of depression in adolescents living with HIV [67]. These forms of intervention should be upscaled to lay counselors who appear well placed to utilize and deliver them with precise assessment of effectiveness [68]. It is imperative that culturally appropriate adolescent-centered interventions are developed that engage youth in a therapeutic process, acknowledge their life experiences and help them cope with their situations so that can move beyond them.

The findings from this study are limited in several ways. Firstly, all participants in this study were retained in care at the time of the interview and the factors identified by this group as significant to healthcare provision and system strengthening may differ from those of adolescents who had discontinued their care. Secondly, the adolescents in this sample were vertically infected and their views may differ significantly to horizontally infected adolescents who may not have accessed the healthcare system as intensely throughout development. However, we do believe the recommendation may be beneficial to all adolescents living with HIV regardless of mode of transmission. Thirdly, the adolescents were conveniently sampled and recruited from primary healthcare facilities in an urban setting and where adolescents communicated easily in English hence findings may not be generalizable to adolescents in other contexts or to those who are not comfortable speaking English. Fourthly, we didn’t ascertain viral suppression rates in this study and successfully virally suppressed adolescents may have different impressions of healthcare needs. Lastly, our adolescents were selected from their adolescent clinics and were giving feedback on adolescent clinics. This may have led to reporting bias, however we attempted to mitigate this risk by recruiting our sample from a variety of clinics. Similarly, the healthcare staff who recruited participants may also have been influential in the accounts given by encouraging a form of social desirability bias. Notwithstanding these limitations, the views of participants in this study may be helpful in guiding services for adolescents living with HIV in South Africa.

Conclusion

Our study adds to the literature on what adolescents feel might be of value to them in terms of HIV treatment and care within the health system, heeding the call for more participatory methods of adolescent inclusion [69]. It also gives guidance to the differentiated care model recommended for adolescent care and treatment that at its core is client centered and rights based. This care model simplifies and modifies HIV services across the cascade to both address the needs of patients more efficiently and reduce unnecessary burdens on an already overstretched health system [60]. Concepts such as task-shifting, decentralization, community-based care all become more focal within the differentiated care model. Lay and peer counselors are a valuable, and often untapped or overlooked resource to adolescents living with HIV, both in the clinic and community, and may serve as a cornerstone of this model. In addition, serving their psychosocial and mental health needs in a responsive, caring and informed manner may strengthen adolescents’ use of the healthcare system and the structure itself can be elevated to become a source of resilience for young people.

Supporting information

Acknowledgments

We are grateful to all participants for sharing their stories. We acknowledge the remarkable efforts of the research counselors (Thamsanqa Jabavu, Nombulelo Shezi, Linda Mazibuko, Princess Mbatha, Tebogo Moloi, Honey Nyapoli, Bafana Gxubane, Shanaaz Randeria and Relebohile Maleka) both in their capacity as counselors and for their support of this research. Thanks to Pirilani Banda for managing the administrative parts of the study. We are grateful to the Department of Health for granting access to the patients and facilities in Johannesburg, and Adv. John Peter (SC) for readily assisting to gain the court order to conduct the research.