Ethical challenges of the healthcare transition to adult Antiretroviral therapy (ART) clinics for HIV infected adolescents and young people in Uganda

Many HIV infected adolescents transfer from to Transition is beset with factors that hinder or facilitate the process, thereby raising ethical challenges of the transition process. Decisions made regarding therapy, such as when and how to transition to adult HIV care, should consider ethical benets and risks. Understanding and addressing ethical challenges in the healthcare transition could ensure a successful transition. The purpose of this study was to analyse the ethical challenges of transitioning HIV care for adolescents into adult HIV clinics. We conducted 18 focus group discussions among 191 adolescents attending 9 different health facilities in Uganda. We explored facilitators and barriers regarding adolescent transitioning to adult HIV clinics. Thematic data analysis was used to analyze the data. The Silences Framework guided the data analysis and interpretation. The principles of Bioethics and the four-boxes ethics framework for clinical care (Patient autonomy, Medical indications, Context of care and Quality of life) were used to analyze the ethical issues surrounding the transition to adult HIV care.

the health of YPLHIV, and also critical for prevention of HIV transmission to wider communities. The objective was to analyze the ethical issues associated with the process of adolescent transition to adult HIV care.

Setting and participants
The study was conducted from August 2019 to January 2020 in 9 facilities at various health care system levels, (three regional referral hospitals; 2 district hospitals, four health centers. Data was collected through 18 focus group discussions with young people living with HIV in nine facilities. Participants were selected purposefully by maximum variation sampling to represent a variety of age group, education level, and socioeconomic status. All the interviews were conducted in one of the private o ces on the ward by the rst Author (SNM). We explored the following issues concerning transitioning of adolescents to adult clinics (Responsibility of their own health, Knowledge about their health, responsible behavior, introduction of transitioning process, Experiences of adolescents who had transitioned and now they were back in the adolescent clinics, facilitators and barriers in transitioning to adult clinics). These participants were identi ed through the peer educators who were approached at the beginning of the study. All participants gave verbal informed consent and were assured that the information given was con dential, that they were not obliged to join the study, and that their views would be anonymous.

Conceptual framework
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-centered.

Data collection and analysis
An explorative qualitative approach was utilised for this study using eighteen (18) focus group discussions. Data was collected from 9 health facilities in all the four regions of Uganda. The study participants were selected through purposeful sampling based on sex and age. Eighteen focus group discussions were held, nine for the females and nine for males with an average of 10 young people in each focus group. 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. A facilitator was conceptualized as a factor that was perceived to enable smooth transition, while a barrier was conceptualized any perceived factor that deters smooth transition.
The focus group interviews were initially reviewed to by the rst author during data collection to assess point of data saturation. After data collection, all the FGDs were transcribed verbatim. The transcribed text was then translated from local language into English. As the researchers aimed at exploring experiences, barriers and facilitators to transitioning. thematic analysis approach was chosen (13). The interviews were read through several times by all authors and the different statements were grouped, resulting in the construction of a map, in accordance with the description by Braun and Clark (13). Different themes and sub themes were identi ed and discussed and rearranged until a nal pattern was distinguished. The themes that were relevant to our research questions were considered and reported.

Theoretical Framework
The Silences Framework (14) guided this research. The Framework asserts that reality is not objective or xed but rather human beings scripts the social world in communities at a particular time (14). The Framework put an emphasis on the 'Screaming Silences' in individual and group interpretations of experiences that can be quali ed as 'truth'. In this paper silences are explored in relation to facilitators and barriers of transitioning among the adolescents in ART clinics in 9 facilities (3 regional referral hospitals, 2 District hospital, 2 Health Center IV and 2 private facilities). in Uganda. The Screaming Silences in relation to facilitators and barriers with in adolescents were explored to ascertain barriers and facilitators for transitioning of adolescents into adult clinics in 9 health facilities in Uganda.
The focus group discussions with the research participants lasted for one hour. All focus group discussions were audio tapped and transcribed verbatim and the transcribed data was subjected to the four phases of the Silences Framework shown below (14) .
Phase 1 -After transcription, the outputs from the focus group discussions were analysed by the researcher and recurrent themes were identi ed as the preliminary ndings from the study. Phase 2 -The preliminary ndings from phase 1 were reviewed by the research participants.
Re ections on the early ndings from the participants were used to enhance further critique, con rming or refuting the ndings from phase 1. A discussion of the silences (Findings) was formulated.
Phase 3 -A further analysis of the ndings from phase 2 was undertaken in this stage by research participants. The participants in this phase were drawn from the ART clinics that had not taken part in the focus group discussion with a critical indirectly associative eye.
Phase 4 -Finally the researcher re ected on the ndings from phase 3, revisiting, reviewing and developing emerging themes which formed the nal output of this study.
Analysis of the ethical issues of the transition process Jonsen et al (15) have described an approach to clinical ethical case analysis known as the "fourquadrant" approach (15,16). This framework, while relying on Beauchamp and Childress' four principles ethics framework (17). These principles include 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); bene cence (Doing and promoting good; preventing and removing evil or harm); non-male cence (Doing no harm; avoiding harming); and justice (Maximizing bene t to patients and society while emphasizing equality, fairness, and impartiality).
The four-box or four quadrant approach takes a more practical and clinically oriented approach to ethical challenges. Within this framework, all ethical problems are analyzed in the context of four topics: medical indications, patient preferences, quality of life, and contextual features (that is social, economic, legal, and administrative) (18). Each topic can be approached through a set of speci c questions with the goal of identifying various circumstances of a given case and linking them to their underlying ethical principle.
Medical indications include diagnosis, prognosis, proposed measures for evaluation and treatment, and expected outcome of treatment. Patients' preferences are relevant from both a medical and ethical standpoint. If the patient has decision-making capacity, his or her preferences should be respected and should guide medical care. If the patient does not have decision-making capacity, or is a minor, the patient's presumed wishes or best interests, as conveyed by a surrogate, serve as the guide. Illness or injury can negatively impact quality of life (QOL), and since the goal in medicine is to preserve, restore, and improve QOL, it is important to analyze how the care transition might affect QOL. During this analysis, the principles of bene cence, non-male cence, justice and respect for autonomy must be considered. Clinical issues do not exist in isolation but are part of a larger context that is relevant to ethical analysis. Contextual features that can affect decision making include patient-speci c factors such as family dynamics, nancial resources, or religious or cultural identity; legal rami cations of care; and personal bias the patient.

Ethical approval
Ethical reviews and approval were obtained from the Research Ethics Committee of School of health Sciences, College of Health Sciences at Makerere University #SHSREC REF: 2019-029 and the Uganda National Council for Science and Technology (SS 5063). Administrative clearance and permissions were also obtained from the management of each of the health facilities. Written informed consent was obtained from young people above 18 years. For adolescents below 18 years assent from the adolescents and consent from parents or guardians was obtained. Participation was voluntary and all the interviews were conducted in private settings to ensure participant's con dentiality.

Results
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 con dentiality; Unfriendly adult clinics induce disengagement and disruption of the care continuum; Patient preference to transition as a cohort facilitates the process.

Patient preferences
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 con dentiality, 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 selfdetermination). These perceptions and experiences are exempli ed 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 di cult 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 t in them. But maybe if I get a child, I will be able to t 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 con rm 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 nally to the Pharmacy for re ll. 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 con dential 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 nd 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". Some adolescents were ready to move to the adult clinics because of some of the bene ts they anticipated receiving: "For me, I would love to go to the adult clinic, such that I be able to meet adults with bene cial 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 bene cial 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

Transitioning preparation
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 con dentiality and privacy, and the need to provide attractive bene ts aimed at keeping adolescents and young people in care. Preparing the adolescents earlier before being transitioned to the adult clinic, like rst 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. "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 nd 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 identi ed 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 exibility 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)

Medical indications
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". 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" (

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 nonappointment 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 exempli ed 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).

Discussion
There is scarce information on ethical challenges faced by HIV infected adolescents during the healthcare transition into adult HIV care. The factors that in uence the care continuum can be linked to success of linkage and engagement during healthcare transition (10). Such success may be indicated by the number of clinic visits within a given time frame or evidence of a marker for a visit (such as blood draw for viral load and CD4 count). However, some argue that success should be de ned based on an individual's viral suppression, which is a marker of adherence to care, including adherence to medication. To achieve this raises ethical challenges in the healthcare transition, which need to be addressed for a successful healthcare transition.
There are several ethical challenges of the adolescent-to-adult HIV care transition that have been identi ed in Uganda. A study done in both private and public clinics in Uganda caring for YPLHIV and found that only 3% of healthcare facilities had a speci c health transition clinic (HTC) to support the transition from pediatric providers to adult providers (19). This indicates lack of preparedness for the adolescent-to-adult HIV care transition. 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. Additionally, another study found that HTC use is less common in those who are older (age 20-24), male, live in rural locations, acquired HIV behaviorally, are not on antiretroviral therapy (ART), and have CD4 counts > 250 (12). Therefore, those at highest risk for health complications and transmission of HIV to others do not have the HTC resources to support a successful transition. Efforts have been made by Ministry of Health to expand the 3% availability to 100% so that the Transitioning process is prioritized at the national level.
The ethical issues can be derived from the care process, using the ethical principles (20), which need to be balanced through speci cation. Autonomy refers to the right of the patient (the adolescent, youth or their guardians/parents) to retain control over his or her body, such that a healthcare provider may just suggest or advise, and any actions that attempt to unduly persuade, coerce or limit the patient's ability to make a voluntary choice are violations of this principle. From this principle, the patient should be allowed to make his or her own decisions -whether or not the healthcare provider believes these choices are in that patient's best interests -independently and according to his or her personal values and beliefs. The principle requires respecting patients' preferences, decisions and choices, as long as they do not con ict with other principles, such as curtailing patient bene ts, inducing harm or reducing fairness.
From the principle of bene cence, health care providers must do all they can to bene t the patient in each situation during the transition (including providing age-appropriate care and adolescent-friendly services).
Besides, all procedures and treatment plans recommended must be with the intention to achieve the best for the adolescent and young person in the HIV care transition. Additionally, to ensure bene cence, healthcare providers should develop and maintain a high level of skill and knowledge, including proving acceptable age-appropriate care for adolescents and young people. An additional competence is the need to consider the patients' individual circumstances, with the understanding that what is good for one patient will not necessary bene t another.
The principle of non-male cence requires that healthcare providers should primarily consider whether anyone (including other people or society) could be harmed by a decision made, even if it is made for the bene t of an individual patient. For instance, failure to transit individuals as a cohort, which the adolescents and young people prefer, may lead to disengagement and loss of linkages and therefore affect transition success. Also, breach of con dentiality and privacy and stigma lead to harm to the individual, but mat lead to society harm if it leads to loss of continuity of care, with potential risk of HIV transmission in case of sexually active adolescents and young people. Still, lack of a formal process of preparedness for patients and healthcare providers constitutes harm to the healthcare transition.
The principle of justice requires ensuring fairness in all medical decisions, to consider fairness in decisions that burden and bene t individuals (as well as equal distribution of scarce resources and treatments). Justice also requires upholding applicable laws and standards when healthcare providers are making decisions that affect adolescents and young people during the healthcare transition. Still, justice is required in allocation of resources, including time, space and other resources needed to prove HIV care during the healthcare transition.
One of the ethical issues identi ed in this study is patient preferences for adolescent-friendly services over adult HIV care. The former services are accessible, acceptable, appropriate, effective and equitable (21); they are exible and tend to provide more personal and age-appropriate care for adolescents (22). In these clinics, the health care providers are sensitive to their young clients' needs, they encourage autonomy and demonstrate respectful and non-judgmental attitudes (which are perceived as harmful by adolescents and young people) (22). In this study one ethical challenges of the patient preferences during the care transition is that since the care provided in the adolescent clinics was very satisfactory to the adolescents, they seemed unprepared and unready to transition to adult HIV care, and some did not even see the need to transfer to care.
There is need to progressively provide age-appropriate HIV and sexual and reproductive health services to meet the needs of the adolescents and young people as they grow up. Adolescent HIV care is characterized by an emphasis on multidisciplinary on-site care with a youth friendly environment, a family-centered focus, and psychosocial support which attends to adolescent developmental needs (23).
From the views of participants, these contextual factors were lacking in adult HIV clinics. Many adolescents with HIV (both perinatal and behaviorally acquired) develop strong and longstanding relationships with their care team, often seeing them as members of their family, especially in the context of prior parental loss (24,25). However, most of these adolescent and young people have grown and need to move to adult clinics to create space for those patients in pediatrics clinic, as well as to access speci c age appropriate services such as sexual and reproductive health services, which may be missing in the adolescent and pediatric clinics. Such adolescents may be reluctant to disengage from health care providers in the adolescent clinics out of patient preferences, yet this portends discontinuity of care and even risk of missing age-appropriate services for elder adolescents and young people. Integrating adolescent friendly days or clinics in ART care, and progressive introduction of sexual and reproductive health services in the pediatric and adolescent clinics may smoothen this transition and eventually improve retention in care (26). Such initiatives potentially improving health outcomes and patient quality of life during the healthcare transition.
To ensure quality of life for adolescents, there is need to engage adolescents or peers in the care provision for them in the adult HIV clinics. In this study most of adolescents saw the unfriendly adults in the adult clinics as a barrier to transitioning. The bene ts of engaging adults in the adult ART clinics to support adolescents in transitioning cannot be underestimated, as it ensures that they feel acceptable and welcome. It is important to explain the transitioning process and its importance to the adults (both patients and healthcare providers) in adult clinics so that they can support these adolescents and young people in the care transition. The role of care givers and adults has been documented in many studies as these individuals are important resource to nd potential solutions to guide the transition process (27,28) to ensure continued engagement of adolescents and young people in the adult HIV clinics to which they are transferred.
As much as possible, the contextual factors that may lead to unintentional harm, such as disclosure of HIV status or breach of privacy and con dentiality should be addressed during the healthcare transition process. Stigma affects an individual's sense of self-worth and self-esteem, reducing ability to seek emotional and psychosocial support through disclosure to others, limiting con dence to adhere to treatment at school or in the workplace, and affecting willingness to seek health services on a continual basis (31). Stigma thus violates all the ethics principles. There is thus need to create clinic-wide strategies to eliminate stigma towards adolescent and young patients in the clinical setting during the healthcare transition (31). HIV is a highly stigmatized illness and many adolescents and young people living with HIV face HIV-associated stigma and disclosure to sexual partners, friends, and family, which is a major barrier to engagement in adult care (29,30) Many 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. Adults, parents and care givers need to understand that stigma can affect an adolescent's ability to live positively with HIV, and thus continuing engagement and continuity of HIV care after transitioning.
Another contextual factor mentioned by participants was congestion and long waiting times in adult clinics. Adult HIV clinics are often more formal with limited scheduling exibility, large numbers of patients and more patient-and disease-focused care, less co-located specialty care, and fewer youthfriendly services (6). These characteristics may explain the poor outcomes of ALHIV seen in adult HIV care (32). Adolescents and young people transitioning to adult clinics identify fear of such an adult clinic environment as a barrier to smooth and successful transition and have described di culties after transfer to adult clinics in dealing with congestion and longer wait times (25,27). Engaging and training adult providers in adolescent -friendly HIV care models may be useful as many adult providers lack the expertise or will to provide youth-friendly services in the adult setting (24,33).
Another contextual factor is that adolescents who had grown up while attending ART clinics are comfortable in these clinics with their peers and their providers, and preferred to be transitioned (as a cohort) into a speci c HIV clinic. Separation from the group they have known for a long time is a major ethical challenge. Still, transitioning the group as a cohort is in itself a major ethical challenge, as the transition care may depend on medical indications (that is, the adolescents and young people may need different care depending on factors such as age, medical complication and social factors). Besides, transitioning as a cohort may limit provision of age-appropriate HIV and Sexual and Reproductive Health services. Age-appropriate services, in a carefully planned healthcare transition, recognize and are responsive to the evolving physical, developmental, cognitive, medical, emotional, educational and social needs, such that they provide close to individualized care. This may not be possible if adolescents transition as a cohort. Yet adolescents feel like they have lost a family when they talk about separation during the healthcare transition (28). It is imperative to assist adolescents identify barriers (real or perceived) to transitioning process so that the providers, care givers and adolescents can explore potential strategies to overcome them. This necessitates exibility in allowing transition as a cohort, as long as it does not lead to loss of potential bene ts such as age-appropriate care or does not lead to inadequate HIV care.
Sill, another identi ed contextual factor that portends harm is the preparedness and preparation for transition for both healthcare providers and patients. Carefully planned transition recognizes the evolving developmental, medical, emotional, educational and social needs. Lack of preparedness portends harm to both patients and providers and is a major ethical challenge. Strong attachment between adolescents and the paediatric providers is a major hindrance to HIV care transition, and may limit initiatives for preparedness (34)(35)(36)(37). Since lack of transition preparation is barrier for effective transitioning, it may affect care outcomes and thus quality of life, especially if it leads to stigma or results into discontinuity of care. Such preparedness requires that transition is carefully planned and managed, taking into consideration the adolescent's medical, psychological and social needs (38,39). Even then, transition should be a gradual process of preparing and supporting the adolescent to make the shift from dependence on caregivers to self-management and autonomy, and into more developmentally and medically appropriate care (27,28,34,35).
Finally, another contextual factor that needs to be addressed is standardization of the process of preparedness for the healthcare transition through a process that recognizes the ethical principles of respect for autonomy, bene cence, non-male cence and justice. In order to improve the transition process for HIV-infected youth, the American Academy of Pediatrics (2013) recommends that (i) written policies and protocols should developed to guide transition; (ii) a transition plan needs to be created jointly by the youth, family members and healthcare providers; (iii) the transition plan should facilitate connectedness of the youth to the adult HIV clinics during the transition, and (iv) there is need for regular communication between adolescent and adult HIV clinics during the transition process for quality assurance (40). The latter calls for understanding adult providers' attitudes and comfort in treating youth, who are often dealing with other challenges (such as challenges of the developmental stage), and that this is critical for ascertaining preparation gaps and needs (41).

Conclusion
Understanding the expectations and experiences of adolescents and young adults as they go through transitional care adult HIV care to will provide important knowledge to improve current practice. Several individual, social, health system and services-related factors raise ethical challenges that need to be considered if the barriers and facilitators are to be addressed so as to facilitate a smooth transition process. These ethical factors relate to patient preferences and need to maintain their autonomy, contextual factors of the transition and the patients' perceived quality of life. To achieve the priority outcomes of the healthcare transition necessitates addressing ethical challenges of the healthcare transition to ensure retention in HIV care, facilitate long-term self-care, provide ongoing holistic healthcare and support, and build trust in the healthcare system. council of Science and Technology (SS5063). The administrative clearance and permissions were obtained from the nine health facility. Written informed consent was obtained from the adolescents and young people. Written informed consent was obtained from young people above 18 years. For adolescents below 18 years assent from the adolescents and consent from parents or guardians was obtained. Participation was voluntary and all the interviews were conducted in private settings to ensure participant's con dentiality.

Consent for publication
Not applicable Availability of data and materials The acquired and/or analyzed data are not publicly available because of the lack of authorisation from the children's legal guardians, and the agreement with the Research Ethics Committee that the database would remain with the corresponding author only. However, all data can be made available by the corresponding author upon reasonable request.

Competing interests
The author(s) declare that they have no competing interests. Authors' contributions SNM designed the study, collected and analysed the data, drafted the paper; SBK contributed to the design the study and reviewed the paper. LD contributed to the collecting data, analysis, and reviewing the paper; EM contributed to the reviewed the paper PM contributed to the reviewed the paper and DKK contributed to the design the study, analysed the data and reviewed the paper. All the authors approved the nal draft of the paper. FGDguidefortheALHIV.pdf