Introduction

Today with the effective antiretroviral treatment (ART), people living with HIV are healthy and live near normal life expectancy [1]. However, a greater than 95% adherence to ART is necessary for durable virologic suppression [2]. ART adherence is defined as the ability to develop and follow a plan of behavioral and attitudinal changes that ultimately serves to empower them to manage a given health condition [3]. It could not be perfect in many life circumstances. According to a meta-analysis which included studies from all age groups worldwide, frequent reported barriers to adherence included forgetting, being away from home, and a change in daily routine [4]. An Indonesian study among transgender women living with HIV also mentioned worked-related tiredness, financial problems, and seeing that friends with HIV who did not receive ART remained healthy as barriers ART adherence [5]. A Laos study reported being busy, being forgetful, illicit drug use, certain lifestyle and education level were associated with non-adherence [6], while a Thai study reported mental health symptoms, access to care, HIV disclosure and family communication as factors related to adherence in PLHIV [7].

Unlike adults who are self-responsible for their medication immediately following the treatment initiation, adherence of those with perinatal HIV infection depends on the caregivers during childhood. Life becomes complicated while transitioning from childhood through adolescent years towards adulthood. Besides their struggle with healthcare transition [8], the physical, psychosocial, and life situation changes could affect ART adherence during adolescent years [9, 10], either with or without change in healthcare access. The rates of ART adherence among adolescents from different regions varied between 53–84% [10]. A longitudinal study in the US reported that the prevalence of nonadherence and unsuppressed viral load significantly increased with age from pre-adolescence to late adolescence [11]. However, not all could make it through the vulnerable period; previous reports revealed an association between poor adherence, advanced HIV diseases and death in adolescents with HIV [12–14].

Globally, of the estimated 600,000 AIDS-related death in 2022, approximately 16% were children/adolescents aged under 20 [15]. In Thailand, as of 2022, there were around 560,000 PLHIV, 11,000 people who died of AIDS, and 1,700 children under 14 were receiving HIV care [16]. The National HIV/AIDS Treatment program has offered HIV treatment free-of-charge for children in Thailand since 2007 [17]. Many pediatric patients started ART in their school ages now became young adults with perinatal HIV (YPHIV) with a long history of ART. We observed episodes with increased HIV viral load, presumed virologic failure, and subsequently resumed virologic suppression in their medical records. As ART is a lifelong treatment and ART adherence is a dynamic process, we perceived adherence challenges during adolescence and young adult life could be manageable and preventable. Factors related to adherence specific to this vulnerable population, which might differ from one setting to another, should be addressed. In this study, we explored barriers and facilitators to ART adherence in YPHIV who survived through the tough time in their adolescent years and were currently virologic suppressed. Learning from their experiences would allow more understanding of the context and enable healthcare providers and those in supportive roles at different levels to offer more comprehensive services or improve existing programs for better health outcomes, including fewer morbidities and mortality during this transitional period of life and later on.

Materials and methods

Results

Demographics of study participants

From June to November 2022, we recruited 20 YPHIV and all of them were enrolled; 8 (40%) were female. The median age of participants were 25 years (interquartile range, IQR 22–28), and duration on ART were 17 years (IQR 14–19). Their characteristics are shown in Table 1.

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Table 1. Demographic of study participants (n = 20).

https://doi.org/10.1371/journal.pone.0305918.t001

The duration of interview ranged from 50–90 minutes. From the interviews, we found that factors affecting adherence in adolescent years of YPHIV were concentrated on the personal level, and more barriers were mentioned than facilitators. The coded excerpts were organized into categories under each subtheme and theme (Table 2).

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Table 2. Themes, subthemes, and categories of factors affecting adherence in adolescent years.

https://doi.org/10.1371/journal.pone.0305918.t002

Discussion

From interviews with YPHIV, most mentioned barriers and facilitators to ART adherence at the personal level. Work/study-related conditions and individual activities they had to participate in various social environments or life situations inhibited them from adhering to ART as they did at a younger age. At the societal level, HIV-related stigma had a significant role in shaping their adherence behaviors. Meanwhile, the strong facilitators included the determination to stay healthy and move on to the future at the personal level and perceived social support at the societal level.

Our findings indicated that many YPHIV participants could not manage their medication. This supported the low adherence self-efficacy reported in previous study among YPHIV at the median age of 320.2 years [20]. At certain biological ages, caregivers and healthcare providers might expect that YPHIV could make their plan and cope with changing situations. In fact, cognitive impairment associated with HIV infection might be an underlying cause of functional impairment [21]. The inability to manage medication and fear of disclosure was similarly described as a part of youth’s experiences regarding ART adherence in a study conducted among Thai YPHIV aged 14–21 years who received ART in community hospitals in 2010–2011 [22]. When youth get a job, they would instead devote themselves to it and prioritize their job responsibility over the need to take medication. Healthcare providers could have a role in guiding and coaching them to make individual plans for managing their medication in different situations. YPHIV should be empowered to maintain their daily discipline to minimize missing doses while not interrupting their day-to-day routine.

Regimen fatigue and resistance to taking medication were reported in older children to adolescent years, as previously mentioned in the U.S. study [23]. We supported that these challenges could persist until late adolescence and young adulthood, as some YPHIV in our study reported being discouraged, feeling hopeless, and having depressive symptoms during adolescence. The findings of desperation about their future while believing they were invincible and invulnerable to illnesses were noted. Either way, they perceived no need to take medication. The desperation was in line with the previous Thai youth study, which reported boredom and discouragement because of the long treatment duration for an incurable disease [22]. On the contrary, the feelings of being invincible and invulnerable to illnesses were in contrast with a U.S. study among youth with HIV aged between 17–25 years, where only a few expressed a feeling of invulnerability to the consequences of HIV in the focus group discussion [24]. Our findings might reflect inadequate health literacy or misunderstanding about the natural history of HIV infection as we found some YPHIV stopped taking their medication due to side effects while believing that they could stay healthy without ART. This misbelief indicated the need for more HIV education, including how drugs control viral replication and how the immune system works. For adverse effects of ART, YPHIV should be encouraged to advocate for themselves and negotiate with their providers to get a more tolerable regimen that does not interfere with their daily activities. The meta-analysis suggested the effects of pharmacist care on improving ART adherence and HIV treatment outcomes [25]. More pharmacist involvement in HIV multidisciplinary care team should be encouraged. Interventions to provide updated HIV knowledge and health education to YPHIV during the transitional period might be considered by institutions providing HIV services, i.e., support groups or mHealth. The Tanzanian study reported the benefit of using peer support groups on improving health outcomes, HIV education, and psychosocial in youth with HIV [26]. Besides face-to-face education sessions, mHealth could be another approach to enhance HIV education, facilitate two-way communication between providers and YPHIV, and promote ART adherence [27].

The most frequent barrier at the societal level was perceived HIV-related stigma. We learned that most study participants did not socially disclose their HIV status. In most circumstances, YPHIV would avoid taking medication in the presence of other people as they did not want to explain what the medicine was for. This challenge was in line with the report from a U.S. study on adults with HIV, in which participants claimed that taking pills every day was associated with a greater chance of revealing their HIV status to others [28]. A study among adolescents with perinatal HIV in Botswana reported that fear of stigma influenced the choice between taking medication at the dosing time and other daily activities [29]. According the a previous study among Thai adults living with HIV in upcountry areas, HIV-related stigma was identified as a primary concern where misconceptions surrounding risk factors for transmission and lack of up-to-date knowledge on modern HIV treatment and prevention were presented in communities [30]. Stigma impacted their adherence behaviors and mental health while living in close-knit communities. Social support is associated with better quality of life in people living with HIV [31]. However, YPHIV with asymptomatic HIV might not feel like getting more support than others without HIV. They only did not want to be different from their peers or siblings. Healthcare providers could have a role in creating a less stigmatized environment, providing updated information, and guiding YPHIV on how to talk to others, if necessary, about disease and medication. Cultural appropriate intervention to reduce stigma in the community that involves people living with HIV in designing and implementation is also required [32]. Stigma-reduction interventions for YPHIV might include cognitive behavioral therapy to boost self-esteem and improve stress management, which was reported from studies in low-middle-income countries as an effective approach [33, 34].

The facilitators to ART adherence included perceiving their health deterioration. After being non-adherent, some YPHIV felt unhealthy and realized it was related to their frequent missing dose or stopped taking medication. Some had revisiting opportunistic infections during virologic failure. They mentioned their being afraid of hospitalization and medical procedure-related sufferance. The fear was similar to a report from Botswana, in which adolescents reported their fear of getting sick and dying as a significant motivator for adherence [29]. YPHIV realized from their negative experiences that being adherent to ART was the way toward ordinary life as that of others without HIV.

Nevertheless, we did not think that everyone needs to have direct experience. YPHIV could learn from other people. Hence, peer support groups or social networks where they could share lessons and support one another might benefit YPHIV, perhaps through a virtual platform or internet-based support intervention, which reported promising outcomes [35, 36]. Many young people stated they wish to be healthy, live longer, and move toward a better future. This idea emerged after episode (s) of suboptimal adherence, usually in late adolescents. Thus, it was like the previous study in Thai adults with HIV [30], in which participants’ determination to stay healthy was a key component of good adherence.

The role of healthcare providers remained critical as YPHIV had a long-term relationship with HIV services since childhood; they deserved attention and reassuring words when they came to the clinic. The Indonesian study documented the role of relationships between healthcare providers and PLHIV, as well as their attitudes as enabling factors for PLHIV access to services [37]. We found different situation as in Thailand ART is free of charge under several healthcare schemes and is easy to access in government or private hospitals. There were some logistic problems related to HIV clinic visits that could be fixed by the healthcare team, who are aware of and understand the situation. Individual counseling and problem solving on a case-to-case basis focusing on their concern is necessary and would benefit YPHIV with different needs. We proposed additional training for providers to deliver youth-friendly services in the existing HIV clinics. In addition, healthcare providers could also bring in and work with non-government organizations with youth-focusing missions to support YPHIV in other dimensions of life.

The strength of this study is that we obtained information from young adult survivors. They were born during the HIV epidemic in northern Thailand and have passed through a long journey of life. The study had several limitations. We included YPHIV, who could resume virologic suppression after failure. Their barriers to adherence might not be as severe or difficult to manage as those of other YPHIV who could not resume virologic suppression. We recruited YPHIV who were willing to share their experiences. They might have different characteristics, attitudes, and more reasons for non-adherence than those who denied sharing. Our study population did not include unreachable YPHIV who are at a higher risk of treatment failure, loss-to-follow-up, morbidities, and mortality. We might need to make more effort to reach them or get help from community-based organizations to reach them. Further research to address their needs is warranted to understand the pitfalls in the current HIV service system and allow us to design and implement interventions for YPHIV to prevent untoward outcomes.

Conclusions

The main factors affecting ART adherence in adolescents are personal. We documented the fear of HIV disclosure associated with non-adherence at the societal level. The determination to be healthy and have a promising future were key facilitators to adherence. Our findings reinforce the importance of establishing youth-friendly services in the existing HIV care setting. Youth providers should allocate more time for tailored individual counselling to maximize their adherence self-efficacy during the transitional period of YPHIV. Using other novel approaches like mHealth, online media, and involvement of social support from different sectors, while being aware of unintended HIV disclosure, might be beneficial to maximize adherence self-efficacy during the transitional period of YPHIV.

Acknowledgments

We thank all outreach workers, HIV clinic staff in hospitals in Chiang Mai, study team in the Family clinic, and young adult survivors with perinatal HIV who contributed to this research.