In Uganda, all ART service delivery they created an adolescent clinic or a day which provided Adolescent living with HIV (ALHIV) a comprehensive Service package in addition to adolescent friendly services. This is because they are a unique group and require additional support. While the components of the adolescent package of HIV care closely resemble those of the adult package of care, how they are delivered has an impact on uptake and success. To be effective, the adolescent package of care ensured: Integration of services, that services are age and development age appropriate, responsive to the needs of both perinatally infected adolescents, as well as those infected later in childhood or adolescence, emphasis on both care and treatment, and services are family-centred. Components of the HIV Care and Treatment service package for adolescents include the following: HIV Counselling and Testing, HIV prevention service, Growth and development monitoring, nutritional counselling and support, opportunistic infection screening and management, Sexual and reproductive health, Counselling and Psychosocial support, ARV preparation, initiation and monitoring, Adherence and retention into care and mental health.
Following transcription, coding and analysis of the focus the following themes on barriers and facilitators to transitioning to adult ART clinics. Barriers identified in this study included; unfriendly adults in the adult clinics, care provided in adolescent clinics, health care providers in adult clinics, congestion and long waiting lines in adult clinics, stigma and fear to disclose their HIV status, preparation to transition and fear to loose friends and the facilitators identified were; Move as a cohort, transition preparation and care in adult clinics.
Barriers to transitioning
Unfriendly adults in the adult clinics
There was an attempt to transition the adolescents to adult clinics but most of them came back to adolescent clinics. The adolescents stated that one of the barrier for them to transition to adult clinics is the judgmental, unfriendly nature of the adults in the clinics. The adolescents found it hard to talk to adults because they are so serious and talk adult stuff, they feared to be discriminated against them
“…. 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)
Care provided in adolescent clinics
The adolescents have been in the adolescent clinics since they were 10 years. They have developed a routine, found friends and care in adolescent clinic is different and it favors them and they like it. 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 suppressed they are fast tracked to the pharmacy and send a maximum of 30 minutes. If they are not suppressed they are taken to the counselors and then to clinician and finally to the Pharmacy for refill. The provide porridge and a bite every time they come to the clinic, they do hold psychosocial events quarterly for all the adolescents mainly to share experience, have talks, dance eat and play. They also have health education sessions with peers. The adolescents felt that they been favored in this adolescent clinic which they know won’t happen in the adult ART clinics because some have experienced 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, 15-19 years)
The health care providers in adult clinics
The adolescents expressed fear for the health care providers in the adult clinic. 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
“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’’. (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 lines
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)
Fear to lose friends
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
“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)
Stigma and fear to disclose their status
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).
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 clinic.
“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 they didn’t know what they are going to do there”. (male, 15-19 years)
Facilitators to transitioning
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 Creating a different day for the transitioned adolescents in the adult clinic and not mixing them with the adults.
“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)
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)
Care in adult clinic
The adolescents want to be treated the way they have been treated in the adolescent clinics as they move to adult clinics that could facilitate their transitioning like one of the adolescent who said
“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 18 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 adolescent clinics because of some of the benefits they will get the moment they as in adult clinics as compared to adolescent Clinics like
“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 ,20-24 years)
All the ART clinic had peer support group and some of the facilities were implementing the new program from Ministry of Health. 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).