Disclosure, Social support, and Mental Health are Modifiable Factors Affecting Engagement in Care of Perinatally-HIV infected Adolescents: A Qualitative Dyadic Analysis

Abstract

Adolescents living with perinatally acquired HIV in South Africa face significant barriers to successful transition from pediatric to adult care. We performed in-depth qualitative interviews with 41 adolescents living with HIV and 18 of their caregivers to investigate modifiable factors to improve engagement in care prior to transition to adult care. Based on dyadic, inductive content analysis, findings suggest that HIV status disclosure, social support, and mental health are targets for improvement in engagement in care. Early disclosure and a sense of belonging facilitated engagement in care, while barriers included delayed or inadequate disclosure, denial, and lack of disclosure to others. Adherence support improved by having a biological mother as a direct supervisor. Barriers to care included changing caregivers, abandonment, undiagnosed mental health problems and learning difficulties. Despite these factors, the majority of adolescents showed resilience and remained engaged in care despite difficult circumstances.

Introduction:

With current antiretroviral therapy (ART), HIV infection has been transformed from a terminal disease to a chronic, manageable infection requiring long-term care and monitoring.(1) As adolescents living with perinatally-acquired HIV age into adulthood, they will eventually require transition from pediatric-based care to adult care. South Africa has the largest population of adolescents living with perinatally acquired HIV in the world.(1–5) Yet, there is little evidence or consensus on the optimal timing or preparation for these adolescents, their caregivers, or their healthcare providers during the transition to adult care.(6)

The transition from pediatric care to adult services has been associated with poor retention in care and poor clinical outcomes for many chronic illnesses, including HIV.(7–15) The process is particularly challenging for adolescents living with perinatally-acquired HIV for numerous structural and developmental reasons including changing care providers, lack of youth-friendly services, rigid scheduling of clinic appointments interfering with school, increasing responsibilities for self-management, neurocognitive problems, and decreasing involvement of adult caregivers.(16–20)

In South Africa, adolescents living with perinatally acquired HIV currently enter adult care at variable ages and developmental stages, typically without preparation or support through the process.(21) The World Health Organization suggests that national HIV programs provide support for adolescents as they transition to self-management within adult-based care.(22, 23) Within South Africa several groups have initiated adolescent-friendly services, adolescent clinics, or clubs to assist with transition;(24–26) however, broader implementation of interventions or protocols with proven efficacy regarding retention in care and viral suppression after transition to adult care are lacking.

Research is needed to optimize care for adolescents living with perinatally-acquired HIV in preparation for transitioning to adult care, improving the transition process, and improving long-term health outcomes. We conducted in-depth interviews with South African adolescents living with perinatally-acquired HIV who were receiving pediatric care services prior to transitioning to adult care, along with their caregivers, to determine modifiable factors that could be addressed through interventions to improve engagement in care.

Methods:

Setting:

Mahatma Gandhi Memorial Hospital is a regional/district hospital located in the township of Phoenix/KwaMashu outside of Durban, South Africa. The outpatient clinic provides care for more than 650 children who were infected with HIV perinatally and are now receiving ART. The adult clinic provides care for more than 1,700 adults on ART.

In the pediatric clinic, adolescents were seen in monthly appointments on the same day of the week each month by the same clinician. Adolescents had the option to attend an unstructured support group meeting during their clinic day. During their visit, they were all evaluated by the same clinician and collected medication at an onsite pharmacy.

In the adult clinic, adolescents were seen every three months during clinics that ran five days a week. They were seen by different health care workers each visit and collected medication at onsite pharmacy monthly. There were no support groups or additional services available in the adult clinic. In this setting, adolescents transferred to adult care when they reached at least 15 years of age, were told their HIV status, and were switched to a fixed drug combination ART.

Study design:

Sampling:

We used convenience sampling to recruit adolescents (n=41) and their caregivers (n=18) from the pediatric clinic prior to transition to the adult clinic. We identified adolescents after their pediatrician determined that they were ready to transition to adult care but prior to transition. All eligible adolescents who were offered enrollment agreed to participated in the interview. One adolescent who was not retained in care was reengaged through a loss to follow up protocol involving phone calls and home visits and was offered enrollment on their first re-engagement visit. Caregivers accompanying the adolescents to clinic were offered enrollment with their adolescent if they identified as the primary caregiver. Interviews with adolescents and caregivers were conducted separately.

Recruitment:

Study participants were recruited in person by a research assistant during their routine clinic visits from September 1, 2016 to November 9, 2017. Adult caregivers ≥18 years old gave written consent to be in the research study. Adolescents <18 years old assented and written consent was obtained from their primary caregiver if they were accompanied to the clinic. Telephone consent was obtained from adult caregivers who did not attend clinic with adolescents. Signing of consent form and enrollment into the study were offered at their next clinic visit.

Data Collection:

We conducted in-depth, in-person, semi-structured interviews to obtain information on modifiable barriers and facilitators to engagement in care for adolescents living with HIV in South Africa prior to transitioning to adult care based on the Social-ecological Model of Adolescent and Young Adult Readiness to Transition (SMART). (27) Our study team developed, piloted and iteratively revised the interview guide.(28) We used the same interview guide for adolescents and their caregivers. Questions relevant to this analysis addressed the following topics: experience with clinic providers, structural barriers and facilitators to adherence and clinic attendance, experience with HIV status disclosure and stigma, and social support from peers, family and community.

Interviews were conducted in person in a private space located on the grounds of the clinic. All interviews were conducted by a female Bachelor’s level research assistant trained in qualitative methods (author TS) who was not affiliated with the clinic. Interviews were audio-recorded, lasted between 60 and 90 minutes, and were conducted in isiZulu or English based on participant preference. Interviews were transcribed and translated into English as needed. Transcription was conducted by two research assistants both of whom are bilingual in isiZulu and English. Each transcript was reviewed by the research assistant who performed the interview for quality and accuracy.

Data Analysis:

We evaluated adolescent responses based on retention in pediatric care (defined as one clinic visit or pharmacy refill in the preceding 6 months) and viral suppression (defined as <400 HIV-1 copies/ml at the most recent blood draw). We defined engagement in care as adolescents who were either retained in care by regular clinic attendance and/or virally suppressed at the time of enrollment. Adolescents engaged in care at enrollment were asked about times when they were previously not successfully engaged in care. We used an inductive content analysis approach that was derived from reviewing, coding, and interpreting the data. The first 10 transcripts were analyzed to develop labels then operational definitions were created and a codebook was developed with selected illustrative quotes. Using an iterative process, approximately 10% of interviews were double coded and any discrepancies were discussed until consensus was obtained for the final codebook. Following the completion of the codebook, the remainder of transcripts were coded using Dedoose software (Version 8.0.42, (2018) Los Angeles, CA). Using the coded data, categories were developed corresponding to important topics that reflected representative and significant perspectives in the data. Category development included a combination of a priori categories (i.e., barriers to retention, facilitators of retention, social support) and additional categories that emerged from the data (i.e., denial, abandonment). The categories were further organized, definitions created through team discussions, and evidence was provided using illustrative quotes from the research participants. Themes within categories were then extracted. For the 18 adolescent-caregiver pairs, we performed a dyadic analysis.(29) Transcripts from the pairs were analyzed together and themes from each transcript were matched to the corresponding transcript and reported together. Themes were organized and illustrative quotes were chosen. To indicate relationships within the dyads, we report quotations using pseudonyms for the adolescent participants where necessary.

Ethics Statement

The University of KwaZulu-Natal Bioethics Review Committee, KwaZulu-Natal Department of Health and the Partners HealthCare/Massachusetts General Hospital Research Ethics Board approved this protocol.

Results:

We interviewed 41 adolescents and 18 of their caregivers. Overall, there were 19 (46%) adolescent females. Of the adolescents, 38 were virally suppressed and 40 were considered retained in care at the time of the interview as indicated in Table 1.

Table 1:

Demographic characteristics of participants

Characteristics of Adolescents	Adolescents n (percent) n=41 total
Females	19 (46%)
Median age in years (range)	15 (14 – 16)
Orphaned (at least by one parent)	23 (56%)
Virologically suppressed at enrollment	38 (93%)
Retained in care at enrollment	40 (98%)
History of viremia or lost to follow-up	9 (22%)
Characteristics of Caregivers	n=18 (44%)
Median age in years (range)	44 (24 – 65)
Biological mothers	11 (27%)

Disclosure-related facilitators of engagement in care

Disclosure, defined as the process, timing, and response to adolescents becoming aware of their HIV status, impacted engagement in care. Adolescents who were disclosed to at an early age and were supported through the process accepted their diagnosis and reported high levels of clinic attendance and medication adherence.

Early Disclosure

Adolescent and caregiver participants described that early disclosure, prior to age 12, led to normalization of living with HIV, allowing adolescents to feel “just like everyone else”. Adolescents reported minimal internalized stigma and seemed to have higher self-esteem. They saw HIV like any other chronic disease. As Sipho (18-year-old male disclosed at age 6 years) answered what it means to be living with HIV:

“It means nothing, because I am the same as others.”

The mother of Asanda (16-year-old female) who began disclosure by age 7 and completed by age 13 describes her experience with disclosing to her child and providing informational and emotional support:

“It’s not easy to tell a child about her status, but as we attend the clinic, they advised us to tell them. So, I ended up telling her about her status and about the pills she is taking. I told her that she will take them her whole life. We were shocked. But I told her [that] life won’t be changed by taking pills and assured her that she will be the same as other people - as long as she takes her pills.”

Asanda (16-year-old female) describes her acceptance after learning that she was living with HIV:

“Nothing changed because I’ve been taking pills since I was young. I also took TB treatment when I was young… I once heard that a person who has [HIV] dies. But then they explain[ed] to me deeply, that you can live a normal life, like other people does - though you have to take pills.”

Belonging / Acceptance

Adolescents who were aware of their HIV diagnosis no longer felt different from everyone else and were able to exchange information resulting in belonging. They realized that they were part of a community of individuals also living with HIV and benefited from additional social support that impacted their retention in care. Knowledge of HIV status increased their motivation for adherence, giving pill taking more meaning. Knowing that others are also living with HIV facilitated disclosure because it minimized the stigma of feeling different from others and facilitated a feeling of belonging. These feelings are apparent in the way Sihle’s (14-year-old male) grandmother reported his acceptance of his HIV status when learning that he was living with HIV:

“A year or two years ago he told me about his status, and he was happy. They told him in clinic during class sessions [adolescent support group]…I was happy because he accepted his HIV status. I noticed that he was more responsible about his ARVs after he knew about his status, though he started taking his pills at the age of 12 years. Sometimes children dislike taking pills. But after he knew, he was more responsible…I can conclude that knowing about his status opened his mind.”

Sihle (14-year-old male) described his feelings when he found out that he was living with HIV:

“I felt happy because they told me about my status, unlike before when I was not aware about it. Before they told me about my pills, I wasn’t taking them every day. After they told me, I was motivated to take my pills every day. During class sessions [adolescent support group], they also told me about the importance of taking ARVs… [I learned that] I am the same as other people without HIV virus.”

Sanele’s (14-year-old male) grandmother described his incremental feeling of belonging while learning the HIV status of others:

“They are treating him fine because no one discriminates [against] him. Other children are also taking ARVs. There are others who are taking these pills in the area that we live in, so they don’t have so much stigma… [Knowing other’s status] helped him a lot because after I told him about his cousin’s status, his stress stopped. He became comfortable. After disclosing my sister’s child’s status, he felt relieved from the burden of being the only one taking pills.… [People in my community] have no problem with people living with HIV because most people have HIV in my neighborhood.”

Sanele’s (14-year-old male) response to learning that he was living with HIV:

“I did not have a problem [learning about HIV] because I take ARVs so I will not die… I guess it means I have to take my ARVs forever.”

The grandmother of Thando (14-year-old female) elaborated on how the process of disclosure led to Thando’s feelings of belonging:

“They gave her ARVs and they did not tell her about her status. She was mad at me because she did not know how she got the HIV virus…I explain[ed] to her that she got it from her mother… After that, I advised her not to be stressed. It doesn’t mean she will die; she will not die. I told her that there are many people who have the HIV virus. I told her that many of us here at home are taking ARVs to make her feel welcomed.”

Thando (14-year-old female) confirmed her grandmother’s description of belonging after her disclosure:

“I was 13 years old [when my grandmother] told me [about my HIV status]. I had no problem…Because she told me I am not the only one with it… She continued to accompany me to clinic to collect ARVs.”

Disclosure-related barriers to engagement in care

In contrast to the above adolescents, other adolescents learned about their HIV status at an older age, were lied to during disclosure, experienced a traumatic disclosure, and/or responded with disbelief or misunderstanding. These experiences created barriers to engagement in care. These adolescents, in turn, had difficulty disclosing their HIV status to others. These factors seemed to increase internalized stigma and affected their identity, which decreased engagement with healthcare providers, caregivers, or peers who could offer social support. The internalized stigma became isolating.

Delayed Disclosure

Delayed disclosure occurred when adolescents were not told of their HIV status until after 12 years of age, consistent with WHO and national guidelines.(30, 31) Adolescents expressed anger or disappointment in not knowing about their HIV status earlier creating conflict with caregivers.

Lihle (15-year-old female) became angry at her mother for not disclosing her HIV status, which limited her access to informational support:

“The reason I was angry is because my mother, at first, she did not tell me. I used to ask what are these pills for? She did not tell me until I came with her to [the] hospital, where I was asked about the pills… I told them I have no idea why I am taking the pills. They asked me if my mom told me about pills. I told them, I asked her several times about the pills, but she did not tell me about it.”

Lihle’s mother reported the process of initial disclosure to Lihle privately, but did not disclose their HIV status to others. This scenario increased emotional support within the pair but denied each of them instrumental support or emotional support from others.

“She is a quiet child. I am the one who use to tell her that we must not forget to take the medication because they are our life. Sometimes, I forget to take my medication and she reminds me or sometimes if she forgets to take her medication, I remind her…When I told her that this was our secret, she must not tell anyone about it in school - because that’s what I was told in [the] hospital, so she did not tell anyone from school except me.”

Similarly, Aphile (15-year-old male) was not told of his HIV status until he was older, thus limiting the availability of informational, emotional, and instrumental support:

“[My mom] was taking ARVs but she kept it from me, though I asked her while I was young… She kept it from me until she died…She died last year. I felt bad [about learning of HIV status] …Because I was wondering why my mother kept that from me. I wish that she told me about it.”

Denial:

Despite caregivers reporting their adolescent’s full disclosure and understanding of their HIV status, some adolescents reported that they were not living with HIV, felt like they did not have HIV, or wanted to forget about their HIV status, which we have conceptualized as denial. Denial occurred in direct contrast to caregivers reporting their adolescent’s full disclosure and understanding. Although, denial can be an outcome of the disclosure process it also hindered the full understanding of their diagnosis (informational support) by precluding conversations about the rationale for treatment, addressing myths about living with HIV, and compromised their ability to access social support and services that facilitate engagement in care, such as peer support groups.

Siya’s (15-year-old male) grandmother reported the he was in denial about living with HIV:

“He is in denial. We told him because he started his ARVs while he was young. When he asks us about ARVs, we explained to him, though he was a child. What I can tell you is that he knows about his status. I would say when he was 10 years, he was aware about his status because he understood, though he was in denial…He knows, but he is in denial because according to him, he is healthy [and] not sick…This denial issue is really a problem with him. He doesn’t take things serious[ly].”

Siya (15-year-old male) initially acknowledged his HIV status then, later in the interview, denied that he had HIV:

“I was still young, but they told me again recently at the age of 13…I guess It means I have to take my ARVs forever.” Yet, later in interview after being asked about living with HIV he denied that he was living with HIV: “My TB is not curable…I have a TB that is not curable…My pills are for TB not HIV. They told me that I have TB, they did not mention HIV.”

His own denial interfered with is ability to receive emotional, affirmation, or instrumental support.

Sandile (15-year-old male) described how his denial affected his adherence despite attempts by his family to provide adherence support:

“I wasn’t feeling okay before; they were forcing me to take pills and I was resisting to take pills. I feel as if I don’t have the virus…I took it as a joke… I used to hide my pills in boxes. I [used to] throw them [away]. My brother caught me and told me to take and drink them. They searched in the [house] and found the pills all over the [house].”

Lack of disclosure to others

These adolescents reported that they did not often disclose their HIV status to others, including their friends. Fear of the reaction or fear that friends would disclose their status to others led to superficial relationships, limiting the ability to receive emotional, affirmation, or instrumental (adherence) support from peers to encourage engagement in care.

Vusi (15-year-old male) described not disclosing his HIV status to his best friend:

“I did not tell him. If he asked about the pills, I tell him the pills are for veins. He does not know what the pills are for.”

Vusi’s sister and primary caregiver confirmed that he does not disclose his status to his friends:

“His friends are not aware about his status because when it is time for his ARVs, I act as if the pills are for headache. I try to make him feel comfortable, when we have visitors, we use codes to talk because it not necessary for his friends to know about his HIV status until he is ready to tell them.”

Lindwe (15-year-old male) reported having only superficial relationships with friends when responding to a question about whether his friends at school know why he is taking medication.

“No…I didn’t tell them because I know they will tell other people, and everyone will know about it…I tell them I go to clinic to collect medication for my grandmother… I talk with my friends, but not about my personal issues.”

Social support-related facilitators to engagement in care

In addition to disclosure, supervision of medication taking, particularly by the biological mother, was perceived as an important form of social support related to disease management. Active medication supervision facilitated engagement in care by detecting lapses in treatment early, allowing instrumental support through involvement of healthcare providers when adherence problems arose. Adolescents whose biological mothers (who were also living with HIV) were able to supervise medication taking on a daily basis described good functional support systems that reportedly enhanced retention in care. Often the adolescents and their mothers took medication at the same time strengthening adherence and emotional bonds while decreasing stigma.

The biological mother of Millie (16-year-old female) described how adherence monitoring led to improved medication taking.

“She used to throw her ARVs under the bed after she knew about her HIV status. When it was time for ARVs, I used to remind her, not knowing she did not swallow them, but she put them in plastic. One day, I was cleaning I find the plastic with pills then I reported her to clinic. [The doctor] changed the time of her ARVs, we are taking them at the same time, 8 o’clock…When they count pills in [the] hospital, they were corresponding with dates because every time I told her to take her pills, she take 2 from their containers and put them in plastic. Luckily, I catch the pills under bed before she threw them away. She is currently taking them because we take them at the same time.”

Millie (16-year-old female) commented on how her family’s adherence monitoring affected her ART adherence:

“I like to play a lot and most of the time I have to be reminded that I have to take my pills. I like to spend time with my friends and having to take pills annoys me sometimes…Sometimes having to be told I have to come take my pills puts me off…My mom reminds me and when I am not at home visiting …. my grandmother reminds me. Actually, everyone knows at home my [Aunt], my brother knows, so they remind me.”

Elihle (15-year-old female) was also directly supervised by her mother, resulting in improved adherence:

“My mother supervises me… I take my ARVs in her presence every day…I take them while she is watching me. I always take them in front of her.”

Social support-related barriers to engagement in care

Unstable home environment

Adolescent participants who were orphaned stated that they frequently changed caregivers. This instability led to poor supervision and poor knowledge of medication schedules and dosing. In addition, caregivers reported fatigue which contributed to decreased supervision or changing of caregivers. Lacking a treatment supporter, unsupervised adolescents often did not take their medication either due to forgetting or disinterest.

The sister and previous primary care giver of Mholi (15-year-old male) transferred custody to their aunt.

“[His aunt] is more patient than me because everything is new with her. She is gentler than me because I’ve given up on him. With her, it’s still fresh, caring for him. She still has energy of following up, even on counting the pills to see if he has taken them well… I am no longer following him as I was before, there is [a] point where you have to stop following him so that he will learn and be more responsible about taking his treatment. It’s the same as for him to come alone for his appointment in clinic. It took a lot for him to be able to come alone to [clinic]. He learned it forcefully because at some point I couldn’t make it to come with him to attend. I took a step to give him money to learn to get to clinic alone. Everyone here at [the clinic] knows about my case so I just decided to leave things as they are and live my life.”

Mholi reported changing care givers and lack of support to come to the clinic:

“I come alone… I was first accompanied by my neighbor, then my aunt but she can’t walk anymore. [My neighbor’s] mom cannot walk…if I walk with them it takes time. If my sister is not at home…but now I come alone.”

Other caregivers described adherence lapses with changing caregivers:

“Sometimes they don’t bring ARVs with them when visiting [family members] and his [family members] don’t bother to ask about it until we ask them,” said the caregiver of a 15-year-old male.

“We support him big time, but the problem is my child’s routine change[d] when he visited his mother. For example, if a child is drinking a specific quantity of milliliters of medicine per day, another person does not understand that. Sometimes they don’t bring ARVs with them when visiting his mother, and his mother don’t bother to ask about it, until we ask them. That is why [the nurse] suggested that a person have to learn how to give a child his ARVs. Because if they did not learn, they don’t care how a child is taking its ARVs. We all have a same problem as caregivers,” said the grandmother of a 15-year-old male.

Abandonment

Due to HIV-associated stigma, many of the adolescents were abandoned by their fathers and raised by single mothers or abandoned by their entire family and raised by unrelated caregivers. This abandonment contributed to internalized stigma and/or hopelessness. The caregivers described how the increased burden of living with a child with HIV often caused the families to disengage from care for the children at a young age.

The grandmother of 16-year-old male described his abandonment by his family and how he is a burden on her.

“His mother left me with him. She went to stay with the father of her other twins forgetting about him. I can say … it looks like she doesn’t like him. She just takes his grant money…. He is like my last born now… my challenge that I have to face all the time.”

Amanda (15-year-old female) was abandoned by her father and eventually rejected by his family:

“I became emotional and had sleepless nights because I was thinking, ‘How come my father does not want me, while he is the reason, I am HIV positive.’ I felt bad about my status… My father did not want anything to do with me and he was not supportive financially. My mother did everything for me before she passed away, even my father’s family does not want me, so I felt useless and unimportant.”

The aunt of a 15-year-old female described how she came to care for her child after she was abandoned by her family:

“My family had a fear that the child will die. For them, it was better if she lived in a children’s home, so that they [would] look after her. If she died, the children’s home [would] bury her. They mentioned that the family won’t feel pain for losing her and it’s better if we distance her from us. Then, I decided to ask my husband if it was okay to take the child and live with her. He agreed.”

The mother of 14-year-old male described how he was rejected by his father and how stigma affected family relationships:

“His father was discriminating him due to his sickness…He never receives his father’s love and grew up knowing he doesn’t have a father due to his illness… His father was distanced from him when he was sick…His father left the neighborhood because of him being sick. His father was not supportive. Even when I needed money to go to hospital for treatment pickup, he never provided [for] us, since I was not working. My neighbors were gossiping about it from the time he was sick from diarrhea. My brother used to call him ‘locust’… because he had diarrhea and he was pale. I decided to relocate because at home they were swearing at me. Nobody was supporting me. No one was visiting me in hospital during admission… Even my supporter was distanced. So is my mother, but now all of them have HIV at home, but we not supportive of each other, everyone is doing their own thing.”

Mental health-related facilitators to engagement in care

Adolescents ability to cope with the mental stresses of living with HIV including internalized and external stigma, affected engagement in care. Many adolescents overcame psychosocial difficulties and eventually expressed acceptance of their diagnosis over time.

Acceptance improves over time

Over time, many adolescents reported accepting their HIV diagnosis and eventually feeling that they belonged to the community, had social support, and could remain engaged in care.

“When I found out about it, I used to be angry and lock myself in my bedroom every day. I come from school, during evenings. I will wait for my mother to sleep before I get out of my room and dish my food. I was angry at her, but we talked with my mum. Now, I am okay… My mother told me to stop being angry because I will end up los[ing] a lot of things in life. My future will be affected also. I then decided to forget about it and continue with my life… At first, I felt useless and I risked everything but as time pass, I accepted my HIV status.” Vuyo (16-year-old male)

The mother of Vuyo stated the following when recounting his response to disclosure:

“He was not okay when he was told about his status…He cried… I spoke to him and assured him that he will not die.”

Thandi (16-year-old female) gradually accepted living with HIV and her adherence improved:

“I know how to get infected with HIV, my parent transferred it to me, so she was not taking her ARVs correctly. As time pass, I learned to accept it because I had no choice - because I have HIV anyway and I didn’t commit suicide… I realized that I don’t have to hurt myself because of my HIV status because I can be suppressed with ARVs and no one will notice that I have HIV virus.”

Resilience

Many of these adolescents were orphaned (56%), abandoned and ridiculed and experienced internal and external stigma. Despite these adversities, the majority were able to stay engaged in care (98%) and remain virally suppressed (93%) at the time of enrollment. This resiliency shows that over time adolescents can overcome the barriers of late disclosure, inconsistent social support, and mental health problems to move toward independence and self care to take control of their health and healthcare decision making.

Mental health and cognitive barriers to engagement in care

Caregivers reported untreated mental illness and learning difficulties leading to treatment gaps. In addition, detrimental effects of depression, suicidality, and cognitive delay negatively interfered adolescents’ ability to practice self care to move toward independently engaging in HIV care.

Untreated Mental Illness

Adolescents with mental illness lacked insight and require additional interventions by caregivers to bring to medical attention.

The mother of Xalani (14-year-old male) described how she informed her son’s doctor of his suicidality:

“He once wanted to commit suicide because he doesn’t want to live. I realized that he is mentally disturbed. He doesn’t listen even during support group… He can’t even concentrate in school…I explained the situation to the doctor.”

Xalani (14-year-old male) described how depression affected his adherence and how he became re-engaged in care:

“Sometimes I forget to swallow my medication. My mom said I was dead sick when I was very young, and I recovered. She told me that when I was young, I had…wounds all over my body. I was sad when my mom told me, and I decided to change my life.”

Learning Difficulties

Developmental delay, school failure, and difficulties with attention and concentration were noted by caregivers as a common barrier to self care and becoming more independent.

“Though they teach him in school, but his mind is not working properly. It is slow mostly in school,” said the stepmother of a 16-year-old male.

“My boy is not doing well at school he had repeated a grade, but his uncle is trying hard to assist him. Last year he came home with a beautiful certificate saying he passed very well. But this year he is not doing good at all, but we are not giving up. His mother even said [that] maybe that certificate did not belong to him,” said the grandmother of a 16-year-old male.

Discussion:

Disclosure, social support, and mental/cognitive health emerged as major domains that affect engagement in care for adolescents living with HIV prior to transitioning to adult care. These domains have modifiable components that can be addressed through interventions targeting adolescents, caregivers and providers to improve the care of adolescents living with HIV as indicated in Figure 1.

Figure 1.

Disclosure, social support, and mental health as mediators of engagement in care for adolescents living with HIV

Disclosure facilitates multiple mechanisms that are critical to achieving engagement in care. (32–38) First, by removing the secrecy and stigma of their diagnosis, adolescents who have had early, successful disclosure are able to access social support (e.g., from caregivers).(32, 37, 39) The absence of rejection due to HIV helps to preserve self-worth and mitigates internalized stigma. Disclosure also allows adolescents to participate in a dialogue about HIV to understand the rationale behind adherence. Open social support results in better supervision and monitoring from treatment supporters. For instance, treatment supporters can identify mental, behavioral and learning disorders that adolescents may be reluctant or unable to discuss with their healthcare providers, thus increasing their access to mental health treatment and services. (40) Involvement of treatment supporters may also facilitate acceptance of the diagnosis by adolescents, who may then be better able to engage in care and develop a sense of belonging and self-esteem. (28, 41–43) These critical relationships foster a sense of belonging and improve mental health, all contributing to improved engagement in care as indicated by Figure 1. The impact of disclosure has indeed been documented through improved adherence, immunologic response, and lower mortality.(36, 37, 44) The World Health Organization thus recommends that caregivers begin the disclosure process prior to age 12 years and many advocate for starting at a much younger age. (6, 45, 46)

Adolescents who are disclosed of their HIV status at an early age can access the necessary social support to build personal relationships and self-esteem. These critical relationships foster a sense of belonging and improve mental health, all leading to improved engagement in care as indicated by Figure 1. Caregivers and providers would benefit from interventions that provide information and tangible support for facilitating disclosure at an early age.

A “disclosure dilemma,” however, may occur in which adolescents do not disclose their HIV status to their friends, resulting in superficial relationships with peers, increasing social isolation, and making individuals living with HIV feel different from their peers.(28, 47, 48) Adolescents living with HIV who do not disclose their status feel that they are keeping secrets from their friends making it difficult to maintain close relationships necessary for social support.(49) In addition, unstable home environments and abandonment lead to delayed or inadequate disclosure and decreased social support adversely impacting the clinical care of adolescents living with HIV. (50) Without interventions from social supporters, mental health disorders can go undiagnosed, unaddressed, and untreated interfering with adherence and retention in care.(51–53) In addition, unstable home environments and disengaged caregivers can result in delayed initiation of ART in perinatally-HIV infected children leading to neurocognitive deficits resulting in problems with executive functioning, memory, and behavioral control leading to suboptimal engagement in care.(54–56) Interventions that address this disclosure dilemma prior to transition to adult care could decrease stigma to improve engagement in care prior to and during the transition process.

Peer support groups and adolescent-friendly clinics that increase peer support have shown improved retention in care and viral suppression among adolescents.(25, 57) Additionally, interventions to increase adult caregiver support and to support caregivers in the disclosure process have shown reductions in depression, behavioral and conduct problems which are mediators to engagement in care.(39, 41) Without knowledge of their HIV status, adolescents cannot participate in peer support activities which can adversely affect self-esteem and engagement in care.

Despite the complexity of these issues, many adolescents showed resilience and remained engaged in care. Interventions have been developed to decrease stress and improve resilience for chronic medical conditions (58) but not for adolescents living with perinatally-acquired HIV. Li, et al. described a theoretical framework leveraging community and family resources with internal assets to improve resilience in children affected by parental HIV.(59) Additionally, Malee found that household income, female sex, and caregiver type affected resilience among children with perinatally acquired HIV in Thailand and Cambodia.(60) Future studies should evaluate factors that improve resiliency in adolescents living with HIV to design effective resiliency interventions.

In our dyadic analysis, we found that responses from the adolescent and their caregiver were often concordant as in many of the quotations above. However, there were several instances of discordant responses, highlighting the importance of the adolescent’s perspective in their own care. As adolescents transition from pediatric to adult care, they require increasing levels of responsibility and are often in conflict between requiring caregiver assistance and developing their own independence. This conflict was exemplified by many of the discordant responses of adolescents particularly around disclosure, adherence, and social support.

The strengths of this analysis include interviews with both adolescents and their caregivers prior to transition to adult care. The dyadic analysis enables a focus on modifiable factors involving key stakeholders that can be addressed through future interventions. By including caregiver and adolescent perspectives, we gained depth of experience through the treatment process. In addition, we were able to evaluate discrepant perspectives from caregiver and adolescent where there were discordant responses from the dyad. The limitations of this study include that not all of the adolescents’ care givers were available to participate in the study. However, we were able to include adolescent/caregiver pairs for almost half of the adolescents who participated in this study giving a diverse spectrum of caregiver/adolescent relationships. Additionally, our sample was largely doing well with their clinical care. Perspectives of those out of care may differ.

Conclusion:

Disclosure, social support, and mental health are important factors involved in engagement in care for adolescents living with HIV and can be influenced by caregivers, peers, providers and direct intervention. These factors may therefore be modified to potentially improve engagement in care for adolescents living with HIV prior to transitioning to adult care to help support an optimal transition process.