From the ethical analysis, the key emerging perceived ethical issues of the transition to adult HIV care were: Reduced patient autonomy; Increased risk of harm from stigma and loss of both privacy and confidentiality; Unfriendly adult clinics induce disengagement and disruption of the care continuum; Patient preference to transition as a cohort facilitates the process.
Need for connectedness with the care providers and other patients
There was an attempt to transition the adolescents to adult clinics but most of them came back to adolescent clinics, because of what they perceived as unfriendly attitude by adults (both healthcare providers and patients) in the adult HIV clinics. The adolescents stated that one of the barrier for them to transition to adult clinics is the judgmental nature of the adults in the clinics. The adolescents found it hard to talk to adults because adults seemed “serious” or unwelcoming, appeared uninterested in the issues of young people and talked about issues that were of interest to them. The adolescents and young people feared to be ignored or discriminated against. Thus there was a perceived disconnect between the adults (patients and care providers). There was also perceived fear of loss of privacy and confidentiality, as were as felt stigma, yet these were cherished by adolescents in the adolescent clinics. Besides, the adolescents and young people had different expectations from hose of adults (care providers and other patients). The patient preferences were in line with the principle of autonomy (respect for the individual patient and his or her ability to make decisions with regard to own health and future; right to self-determination). These perceptions and experiences are exemplified by the participants below:
“…. the adult people are so judgemental, you hear them saying, “how did he get the HIV? such a young child! yet sometimes, you got it from your mother, like me I got it from my mother and they don’t end only here, they again take them to the community and the whole village knows and then you reach there when everyone has known’’ (male, 20–24 years)
“…. when you go to the adult clinic, it may be so difficult to comfortably associate with the adults. So, it may not be easy for us. They have parental thoughts, yet for me I have adolescent thoughts. I don’t know if there are adults, that I will be able to converse with like it is here. So, I think it may be so hard for me to comfortably converse with them or fit in them. But maybe if I get a child, I will be able to fit in them knowing am a fellow parent.” (Female ,20–24 years)
Need for similar care as provided in adolescent clinics
The adolescents had been in the adolescent clinics since they were 10 years and have developed a routine, made friends hence identifying care in adolescent clinic as different and favorable to them. A typical adolescents’ clinic starts off with a reminder from the peer a day before the clinic. Those who confirm will be expected to attend the clinic and those who are not able reasons are given and if it is within the reach of the facility they are facilitated like transport. On the real day they start off with education session either from the peer, health providers or counselors depending on the schedule and experience. After the session if they are immunosuppressed (low CD4 counts or high HIV viral loads) they are fast tracked to the pharmacy and spend a maximum of 30 minutes. If they are not immunosuppressed (normal CD4 and low HIV viral loads) they are taken to the counselors and then to clinician and finally to the Pharmacy for refill. Besides, in the adolescent clinics, healthcare workers provide porridge and a bite every time they come to the clinic. The health workers hold psychosocial events quarterly for all the adolescents, mainly to share experience, have talks, dance eat and play the with a health education with peers. The adolescents felt that they been favored in this adolescent clinic which they know won’t happen in the adult ART clinics. Some adolescents had experienced what goes on in the adult clinic:
….at a certain point it comes back to the health workers. Health workers tend to treat adolescents and young people in a different way while in the adolescent clinic and therefore the adolescents don’t wish at any one point to leave their clinic to go to the adult clinic where they will not be treated the same way” (female, above 24 years)
like another reason why we might be scared to leave this adolescent clinic, we think that our clinic is more confidential and secure than the adult clinic because we feel like our secrets are safe in the adolescent clinic than in the adult clinic. Yah, we feel that and we think that’s what works for us because we feel we are the same age it’s easy to understand each other but in the adult clinic adolescents fear to meet there their relatives, their aunts their uncles, who may expose their status outside. It’s not okay because stigma is high, discrimination, some of us are still in school so, we fear those, so we find that it’s hard for someone to be exposed outside in the adolescent clinic than in the adult clinic. (female, 18 years)
Perceived care in the adult clinic
The adolescents want to be treated the same way they have been treated in the adolescent clinics when they move to adult clinics and this could facilitate their transitioning.
“They should provide patients in adult clinic with the same privileges like those in the adolescent clinic for example giving them porridge, having adequate counsellors, short waiting time among others”.(female 15–19 years)
“Treating adolescents well like children even when they are transitioned to the adult clinic, like being caring and kind to them while in the adult clinic”. (Male ,15–19 years)
“Moving with the same health providers to the adult clinic whom the adolescents are used to and who know more about them’’. (Female, 15–19 years)
Some adolescents were ready to move to the adult clinics because of some of the benefits they anticipated receiving:
“For me, I would love to go to the adult clinic, such that I be able to meet adults with beneficial ideas and knowledge, and also to have sensible and mature conversations with them” (female, 20–24 years)
“I would love to go to the adult clinic because now when I get there obviously there are packages that are given in the adult clinic that I can’t get here like practicing safer sex, family planning and by that time I will be engaged so they will be beneficial to me”. (Female ,20–24 years).
“Differentiated Service Delivery model, they have privileges of getting drugs from home, in the community they don’t have to come here and for the adolescents, it’s the clinic and I would also love to be on those groups where you don’t have to come to the clinic, I only have to come to the clinic when I have issues” (Male ,20 years)
All the ART clinic had a peer support group and some of the facilities were implementing the new program from Ministry of Health called Young adolescent program Support (YAPS) which was assisting adolescents to adhere to their treatment. In peer support groups adolescents to help each other to improve and better manage their situation, share challenges and discuss solutions. Members support each other to implement decisions made to meet their psychological, social, physical and medical needs
I feel like they still need more help in the adolescent clinic from my peers (peer support) through their support groups and also from health care providers especially their counsellors and social support on adherence to medication among other challenges they face. (Female, 20–24 years)
The contextual factors of care during the transition
The adolescents expressed concerns that they were not prepared for the transition of care. It is possible that even the healthcare providers in the adult HIV clinics are probably not prepared to handle adolescents who are transitioning in adult care. Such preparation would require orienting them to the needs and preferences of adolescents and young people, the need to respect adolescents’ autonomy and decision making, the need to avoid undue harm through disclosure of HIV status or breaching confidentiality and privacy, and the need to provide attractive benefits aimed at keeping adolescents and young people in care. Preparing the adolescents earlier before being transitioned to the adult clinic, like first talking to them about transitioning and telling them everything about the adult clinic would facilitate transitioning:
“We should be having sessions with parents and the health workers and discuss with them to on how to treat the adolescents well when they are transitioned to the adult clinic, not to be judgemental, not to disclose their status in the village, not to talk about them, not to discriminate the adolescents among others such that the adolescents feel comfortable when they go to the adult clinic’’. (female 15–19 years)
“I think transitioning should be introduced to us from the point we step in and become their client so that we grow up with that in mind, it’s not like an ambush, like the way they are doing it now. But if at a point we steeped in here during counselling, they added that point of transitioning each time I have a counselling session they tell it to me, it wouldn’t be new to me and I will be feeling comfortable going there because they will be telling me the advantages and why but now it’s had for someone.” (Female, 20–24 years)
The health care providers in adult clinics
The adolescents expressed fear for the health care providers in the adult clinic, who may be unprepared to provide age-appropriate care for adolescents and young people. The adolescents thought that working with the new providers would not be favourable to them and providers in the adult clinics may not be friendly and kind like those in adolescent clinics. While any person of any age would fear a transition, what makes it important as a barrier that this was a recurrent point in the discussions, and participants gave examples on how this usually manifests.
“I fear to find different and new health providers in the adult clinic who do not know me and they don’t know my story’’ (adolescent female, 15–19 years)
“Fear that the health workers in the adult clinic are not kind and caring as those in the adolescent clinic’’. (female, 15–19 years)
Congestion and long waiting times
Some of the adolescents who had visited the adult clinic expressed that adults spend a lot of time in the clinic from morning to evening, whereas in adolescents’ clinic they are seen very fast and they leave. The adult clinics have so many clients and are congested, Adolescents don’t want to spend a lot of time in the clinics
“When I come putting on my uniform, they give me the medicine but there you have to wait until they finish those who came first but here, if I come putting on my uniform or even if I am not putting it on, I get my medicine fast’’. (Male.15–19 years)
“Some of us are schooling going children, some are working so, someone will escape from school to come pick medications, some will escape from work to come pick medications, so, when we are transitioned for real, remember when you join adulthood, then, for them they know ounce I am going for medication I am going to make all that day for medication but for us we are always on a quick schedule. As you come you left school when having a test in the afternoon, you come rushing you say, aya ya ya, I am going for a test, they give you your medicine and you move but the adults stay here the whole day. We see, some of our parents we come with them and they expect to spend the whole day and you find you came with the parent for you you’re done but she is still there. (female, 20–24 years)
Personal factors such as fear to lose friends
Since young people who were infected with HIV as children were initially not expected to survive until adulthood, relatively little attention has been given to issues associated with this transition to adult care. The participants preferred that the adult HIV clinics should ease and smoothen the transition process by identified a fellow youth as a care provider to meet with the transitioning youth, to offer information, emotional support, and even just to provide company at medical visits. Such a staff may be conversant with the needs, preferences, and expectation of adolescents and young people, such as flexibility and friendliness, which go a long way toward helping adolescents make the transition to adult care and ensure continuity of care. Besides, the adolescents expressed that if they are transferred to adult clinics they will lose their friend since they will be given different appointments where as in adolescent clinics they had a special day when they met as adolescents, this scares them a lot, and was perceived as potentially harmful. Thus, with improved life expectancies, health professionals are increasingly faced with the new challenge of working with these young people as they grapple with the unique experience of being an HIV-infected adolescent transitioning into adulthood.:
“I don’t want to go to the adult clinic because they will miss their age mates since they usually come to the clinic and share their experiences”. (female, 15–19 years)
“I would not wish to go to the adult clinic, is because I will miss my friends. When you come here, you chat with this one and you have totally a different conversation with another person”. (male, 15–19 years)
Health system factors and preparation for transitioning
The adolescents expressed that preparation is paramount for them to transition and it may hinder them from transitioning because they don’t know what to expect to do there and what is expected of them. This could be that they are not prepared well or they don’t know what to expect in adult clinics Some adolescents think they are still young and that they have not reached that age of going to the adult clinic. Initially the Ugandan guidelines said that the age of transitioning was 18 years and later moved it to 24 years. However, there are clients who are above 24 years still seen in the adolescent clinic. This was perceived as unfair to both affected young people and adolescents, as it was a form of unequal treatment, and therefore an injustice that adolescents are not well prepared for a smooth transition to adult HIV care. Besides, it was an indication of failure to provide age-appropriate care to HIV patients, which in itself is also an injustice. Yet Continuity of care is a major challenge for young people living with HIV, especially when transitioning from pediatric and adolescent care into adult HIV care.:
“We don’t want to go to the adult clinic because they think they will be treated like adults yet they are still those vulnerable people who still need that care like that in the adolescent clinic”. (female, 15–19 years)
“I didn’t want to go to the adult clinic because I didn’t know what they are going to do (there)”. (male, 15–19 years)
Moving as a cohort
Adolescents expressed that taking them as a cohort to the adult clinic so that they move with their friends whom they have been with and are familiar with would facilitate the transitioning process instead of distributing them in the different adult clinic days. However, this may not always be possible, for adults, the patients may be different clinic days according to medical factors such as presence of ART complications, immunosuppression, reproductive health needs, or failure of a given treatment regimen. Creating a different day for the transitioned adolescents in the adult clinic and not mixing them with the adults was not always possible or feasible.
“If they are to change us to the adult clinic, they should take us as a group because now you are able to see your friends and age mates maybe they get like 10 adolescents and they take them there as a group but when you have been knowing each other. So, that helps”. (Male ,20–24 years)
“Like all of us as we are here, all of us should go at once because as we are here, we know our selves and we associate. So, even if they give us one day in a month, but we are as we are here when we are age mates but not sitting here next to a 70 year, grand mum” (Female 15–19 years)
Quality of life
Stigma and fear to disclose their status
For young individuals receiving treatment, transitioning to an adult model of care presents a potential stumbling block to achieving and maintaining viral suppression, and therefore portends poor quality of care. The adolescents expressed fear that if they went to the adult clinics, the adults would disclose their sero-status and this would create stigma in the communities they live in:
“I fear to find relatives and village mates in the adult clinic who might disclose my HIV status back in the village to their children and other people in the village” (female, above 24 year).
Moving as a cohort
Adolescents felt that they had stayed together for a long time with fellow adolescents, and had formed special bonds of friendship. For this reason, they wished that they could be transitioned to the same clinics for adult HIV care. Their view was that taking them as a cohort to the adult clinic would enable them maintain these friendships, which were deemed essential for a better quality of life, compared to if they were separated. To adolescents, taking them as a cohort of people who are familiar with each other would facilitate the transitioning process instead of distributing them in the different adult clinic days, and so would ensure a better quality of life. However, this may not always be possible, for adults, the patients may be different clinic days according to medical factors such as presence of ART complications, immunosuppression, reproductive health needs, or failure of a given treatment regimen. Creating a different day for the transitioned adolescents in the adult clinic would ensure better quality of life. In contrast, mixing adolescents with the adults was likely to lead to poor quality of life.
“If they are to change us to the adult clinic, they should take us as a group because now you are able to see your friends and age mates maybe they get like 10 adolescents and they take them there as a group but when you have been knowing each other. So, that helps”.”. (Male ,20–24 years)
There is also more personal interaction with healthcare providers, some of whom are peers of the adolescents and young people. Adolescent clinics tend to have more resources to support youth, [such as] funds for transportation to clinics, smaller caseloads, and more on-site comprehensive services, and [they] do more personal interactions, such as such as sending text message appointment reminders, seeing youth even if they are late for their appointments, or accepting to see the youth on non-appointment days. Yet adult HIV clinics may not have these considerations. This ‘hand-holding’ by peers and healthcare providers can be extremely helpful for adolescents and youth to stay engaged in care at the adolescent clinic (as treatment buddies). However, such an arrangement or practices may leave youth underprepared to meet the behavioral expectations of the adult clinics, where they have to be in control of their destiny. This challenge is exemplified by one youth:
“I would not wish to go to the adult clinic, is because I will miss my friends. When you come here, you chat with this one and you have totally a different conversation with another person”. (male, 15–19 years).