Abstract

Background

Adolescence is commonly perceived as a distinct and typically healthy stage of life. However, in regions with a high prevalence of HIV, like Ethiopia, numerous adolescents are contracting the virus. Upon testing and diagnosis, they encounter care-related issues, particularly barriers and facilitators of the healthcare transition from adolescent to adult clinics. Hence, the study aimed to investigate the barriers and facilitators influencing the transition of adolescents living with HIV (ALWHs) in the resource-limited settings of Southern Ethiopia.

Methods

The research employed a phenomenological study design with a qualitative methodology. Purposive sampling was used to gather data through in-depth interviews (IDIs) and focus group discussions (FDGs) involving ALWHs and their parents. The data analysis followed Van Manen鈥檚 principles.

Results

Following Van Manen鈥檚 guidelines, the data analysis revealed a conceptual framework with two major themes: 鈥淏arriers鈥� and 鈥淔acilitators鈥�. The theme barrier was derived from three sub-themes including behavioral barriers, social barriers, and system barriers in the transition. The theme facilitator was derived from four sub-themes including self-acceptance as an adult, a desire to experience new things, a supportive family, and friendly healthcare services. The study identified three levels of factors influencing the transition into adult clinics: individual, family/peer, and healthcare-related factors. The barriers to transition included lack of knowledge, being in a romantic relationship, psychosocial struggles, perceiving us as immature, stigma, negative peer pressure, lack of timely disclosure, absence of transition guidelines, disrespectful treatment, and absence of separate clinics. On the other hand, facilitators such as self-acceptance as an adult, desire for new experiences, family support, informed support and promising outcomes, flexible appointment scheduling, and psycho-social support groups were found to improve the transition process and enhance the overall well-being of adolescents living with HIV.

Conclusion

The study highlights the complex transition process for ALWHs into adult healthcare. Barriers such as lack of knowledge, stigma, and disrespectful treatment pose challenges during this critical period. Conversely, facilitators like self-acceptance, family support, and youth-friendly healthcare services can enhance the transition experience and well-being of ALWHs. Collaborative efforts among ALWHs, families, and healthcare providers are crucial for successful transitions and improved health outcomes. Separated clinics catering to the unique needs of ALWHs are recommended to address privacy concerns.

Introduction

The World Health Organization (WHO) defines adolescence as a life stage between childhood and adulthood, with an expected healthy age range of 10鈥�19 [1, 2]. Over 2听million adolescents worldwide are living with perinatal and behaviorally acquired HIV, with a higher risk of horizontal HIV infection [3, 4]. Behavioral HIV acquisition occurs when adolescents engage in high-risk behaviors, while perinatal acquisition occurs when they are born to HIV-positive mothers and contract the virus during pregnancy, childbirth, or breastfeeding [5,6,7]. Sub-Saharan Africa (SSA) is a major (80%) global hub for adolescent HIV infection [4, 8, 9], with a significant prevalence of behavioral [3] and perinatal cases, affecting around 160,000 children annually [7].

Ethiopia, despite antiretroviral therapy, continues to have a high HIV/AIDS burden [10], with many children experiencing chronic comorbidities and reduced quality of life [11, 12]. Health inequality, gender-based violence, and lack of communication affect adolescents鈥� health [13, 14], particularly in southern Ethiopia, where access to HIV care services is limited and the quality of care provided is often inadequate [15, 16].

United Nations Children鈥檚 Fund (UNICEF) defines transition as a deliberate process involving the transition of healthcare to adult clinics, addressing the psychosocial, medical, and educational needs of ALWHs [17]. Pediatric HIV clinics offer friendly, fast-tracking care and psychosocial support groups, dependent on families and providers [17, 18]. However, adult clinics shift to long-tracking care due to resource shortages, staffing, and funding [19]. Families can help transition to adulthood by disclosing HIV status, providing psychosocial support, and reminding appointments [6, 20]. Several of these obstacles are interconnected and difficult to distinguish which barriers have the largest role in swift transition.

The transition of HIV care into adult care in Ethiopia is complex and challenging [21], with only 8.7% of ALWHs successfully transitioning [21, 22]. The UNAIDS 90-90-90 targets are not met [23], and the barriers and facilitators of this transition are unclear because of the lack of transition guidelines [21] and separate clinics for ALWHs. However, the barriers and enablers of HIV care shift into adult care are not well studied. Therefore, the study aimed to explore the barriers and facilitators of the transition of ALWHs from pediatric to adult care in the under-resourced setting of the southern region of Ethiopia.

Methods

Research design

This study used a qualitative approach, employing a phenomenological research design to achieve the aim of exploring the experiences of adolescents living with HIV (ALWH) and parents of ALWHs as they were in a complex transition from pediatric to adult HIV care. This method proved effective in exploring personal experiences, behaviors, and motivations, especially in diverse cultural settings [24].

Setting

The study was conducted in eight public health facilities within southern Ethiopia, characterized by diverse linguistic and ethnic groups. The Southern Ethiopia regional state is home to around about 88.9% live in rural, while only 11% live in urban [25]. In the region, the utilization coverage of adolescent-friendly services ranges from 10 to 55%, with limited access to adolescent HIV care services [26].

These facilities include Arba Minch General Hospital (AMGH), Chencha Primary Hospital, Dilfana Primary Hospital, Jinka General Hospital (JGH), Jinka Millennium Health Center (GHC), Sawula General Hospital (SGH), Sawula Health Center (SHC), and Wolaita Sodo University Comprehensive Specialized Hospital (WSUCSH).

Participants and eligibility criteria

The study enrolled adolescents who had acquired HIV either perinatally (by birth) or behaviorally. Adolescents unaware of their HIV status were excluded, ensuring participants were aware of their HIV status for meaningful discussions about their experiences. The study specifically considered parents of adolescents, focusing on those who had not disclosed their HIV infection to their adolescents, allowing for a comprehensive exploration of their experiences and perspectives in navigating challenges associated with the transition of HIV services from child to adult care. Those willing and able to provide informed consent were recruited after the invitation to participate in the study.

Recruitment

Participants were recruited via purposive sampling, with healthcare providers at the study site referring potential candidates. Following approval from the Ethics Review Committee (ERC), the research team engaged providers to communicate research objectives and eligibility criteria to potential participants and their parents. Providers were tasked with disseminating research information to their clients, and interested parties were invited to provide their contact details to the research team. Subsequently, research team members reached out to participants, providing comprehensive study information and consent forms. Upon agreement, participants were scheduled for interviews or focus group discussions (FGDs), preferably at their healthcare facility.

Data collection methods and procedure

The data was collected between February and March 2023. FGD and IDIs were collected by research team members (MSS, and BBB) and experts experienced in qualitative research and data collection methods with qualifications in Public Health, Reproductive Health, and Health Education and Behavioral Science. The study utilized in-depth interviews (IDIs) and focus group discussions (FGDs) as data collection methods, ensuring depth and breadth in the data without redundancy. Semi-structured guides (supplementary Table 1) were employed for both IDIs and FGDs. The data were collected from the participants at mutually agreed times and locations. A total of 18 adolescents and 11 parents participated in IDIs, lasting 40鈥�60听min, while 33 adolescents contributed to four FGDs, each involving 8鈥�9 participants, lasting for 60鈥�90听min. Before the interviews and FGDs, demographic information was also collected. The IDIs and FGDs were conducted in the local language, and audio recorded. The field notes and emotional cues were also documented during interviews by the data collector. Data collection continued until reaching data saturation. Saturation was assessed by evaluating the repetitiveness of responses. Specifically, data collection continued until no new or significant information emerged from the interviews and FGDs. The research team also engaged in regular discussions to review the emerging data and confirm that additional data collection was unlikely to yield new insights. This iterative process ensured that saturation was reached and provided a robust basis for the qualitative analysis.

Analysis

Van Manen鈥檚 phenomenological analysis method [24] was employed by a systematic approach to data analysis, starting with repeated readings for open reflections on initial impressions. Subsequently, meaning units are identified within the text, and these are organized into descriptive categories to convey fundamental aspects. A deeper exploration of structural features follows, examining the interrelation of distinct elements. Integrating textural and structural aspects provides a comprehensive understanding of the phenomenon. Essential themes are then extracted to encapsulate core meanings embedded in participants鈥� experiences. Validation from participants ensures alignment between interpreted themes and lived experiences.

Results

Socio-demographic characteristics of the participants

Of 51 ALWHs that participated in the study, more than half of them ( 54.9%) were at the pre-transition level (using children and adolescents-focused services) and 45.1% at the post-transition level (using adult-focused services). Of 51 ALWHs, most of them (64.7%) were adolescents who acquired HIV behaviorally while 35.3% perinatally acquired it. More than half (54.9%) of the adolescents were male. The majority of them (68.6%) were aged 10鈥�15 years old during HIV status disclosure. The majority of ALWHs were students (98%) and half of them were high school goers (51%). Most ALWHs were living in urban areas (88.2%) (refer to Table听1).

With regards to parents鈥� participants, all parents were mothers and HIV-positive. Nearly half of the mothers (45.4%) obtained higher secondary education, by occupation, most of them were housewives and residing in urban areas (63.6%).

Table 1 Socio-demographic characteristics of IDI and FGD participants in under-resourced settings of Southern Ethiopia, 2023

The theoretical framework

Please refer to the illustrated Fig.听1 for the framework driven by the current study. After the analysis, the framework emerged two main themes, 1 鈥淏arriers鈥� and 2 鈥淔acilitators鈥�. The theme barrier encompasses three sub-themes (behavioral barriers, social barriers, and system barriers in the transition) and ten categories. While, the theme facilitator comprises four sub-themes (self-acceptance as an adult, a desire to experience new things, supportive family, and friendly healthcare services) and three categories. We further synthesized these sub-themes and categories using three different levels of influences coming from (1) Adolescent individual factors, (2) Family/Peer-related factors, and (3) Healthcare-related factors.

Fig. 1

Theoretical framework of barriers and facilitators in the transition to adult HIV care. The bold text indicates the level or sub-theme, while the light blue text highlights prominent barriers, and the blue text highlights prominent facilitators. The distinction between Times New Roman and Garamond in font styles enhances readability and comprehension of barriers and facilitators respectively: bold text emphasizes key points. At the same time, italics provide emphasis without overwhelming the reader. Color coding visually categorizes the information, making navigating through the different themes and concepts presented in the figure easier

Categories represent specific elements or facets that further classify the data, helping to organize it into more focused areas of interest within the sub-theme. In the current qualitative study, while most sub-themes have associated categories, not all of these categories are divided into sub-categories.

Sub-themes were defined as a more specific pattern or idea that falls under a broader theme. Sub-themes were developed after grouping related categories into a broader heading, refining or narrowing down the theme into more detailed aspects or dimensions of the data.

Barriers

Behavioral barriers

Lack of knowledge. As a primary factor, insights from participants reveal that ALWHs and their parents may underestimate the gravity of the condition because of a knowledge gap on HIV/AIDs and the transition to adult care. Participants believe that the disease鈥檚 severity will diminish over time, regardless of treatment. Some participants view HIV/AIDS as less severe and are indifferent about taking medication. They believe that as long as they can access nutritious food, illness is not a major concern. ALWH said, 鈥淗IV is a simple disease for me, Diabetes is more dangerous. Most people feel HIV is a killer disease but is not. So, I don鈥檛 worry about care or transition鈥� (P4, ALWH, FGD, Jinka). Another participant explained the undermining severity of HIV 鈥淭here are many types of diseases in this world, such as hypertension, diabetes mellitus, anemia, etc. These diseases do not let you eat adequate food. But if we take a good [balanced diet] we can live longer and live a good and happy life.鈥� (P3, ALWH, FGD, Sawula). Some ALWHs lack an understanding of HIV transmission, prevention, and the role of medication in suppressing HIV. 鈥淚 thought HIV is a disease [mild one] and I know I will stop taking those medications when I become 18 years of age, as it will treat me completely [when I grow up闭.鈥� (P12, ALWH, IDI, Sawula).

The lack of awareness of adult care services among ALWHs might be linked to the persistent nature of the illness and their compliance with treatment and follow-up procedures. More than half of ALWHs involved in this study were unfamiliar with the adult healthcare services and transition process. As the participants expressed: 鈥渊别蝉, since they didn鈥檛 teach us more about it, I don鈥檛 think we are prepared for the transition. I didn鈥檛 get information about that.鈥� (P9, ALWH, IDI, Jinka), as another participant verbalized, 鈥淚 have no information regarding transition [between two services闭.鈥� (P5, ALWH, IDI, Sawula); 鈥�I haven鈥檛 ever heard of treatment transition.鈥� (P9, ALWH, FGD, AMGH).

Additionally, family members may exhibit an inadequate understanding of the transition, contributing to ineffective transitions. Many mothers (n-8) denied having the information about transiting services from pediatric to adult health services. (P16, mother, IDI, Wolaita Sodo) expressed:

I have no information regarding the transition of ALWHs to adult care. No one informed me about the transition 鈥� and why this is necessary?

Being in a romantic relationship. Participants underscored adverse behaviors posing barriers to the transition to adult healthcare for those with HIV. In the situation when ALWHs start 鈥樷�榬omantic relationships,鈥欌�� it may completely divert their attention from the importance of the treatment and follow-up on time. This is especially clear when there is discordant HIV status between the two. He/she may not adhere to the medication due to the fear of loss of the partner or attention being distracted. As expressed by one of the participants 鈥�When you are in love with your friend then you completely forget the drug. Then you will be affected and get [more] illness.鈥� (P2, ALWH, FGD, Jinka).

Psycho-social struggle. ALWHs and their parents grapple with psychosocial struggles, such as loneliness and stigma, which are associated with delays in transitioning from pediatric to adult care. This psychosocial challenge may impede their engagement with the healthcare system, potentially delaying the transition between services as feelings of loneliness may contribute to concealment and diminished interest in healthcare follow-ups. As expressed by one of the participants, 鈥�How enduring must this medicinal suffering be?鈥� The fear of viral escalation and the loss of our ability to safeguard ourselves hinder our progression. These struggles impede our journey across.鈥� (P15, ALWH, FGD, Wolaita Sodo)

鈥淭he major problem is feeling lonely and fearing being alone may contribute to not following the treatment regularly during childhood, which is linked to the unsuccessful shift to adult clinic.鈥� (P2, ALWH, IDI, Jinka).

The participant expresses self-blame and disappointment, envisioning a life without the virus and comparing themselves with their healthy peers. This tendency significantly undermines self-image, self-esteem, and motivation. This comparison leads to an unwanted cycle that may negatively affect their care in the adult clinic, adding psychological toll and stigma experienced by individuals navigating the transition.

鈥� I blame and feel disappointed, imagining a life without the virus, like any other person. This self-comparison may contribute to an unproductive cycle, significantly affecting my self-esteem and motivation to access care in the adult clinic.鈥� (P4, ALWH, FGD, Wolaita Soso).

Social barriers

This sub-theme emerges concerning the social barriers, collectively shaping formidable barriers to the transition from child to adult care services. The majority of the participants (n鈥�=鈥�40) emphasized the pivotal role of a family agreement in navigating the transition of ALWHs to adult care. The hesitancy or outright refusal of families to grant consent emerged as a noteworthy barrier, impeding the progression of the transition.

The participants鈥� narratives identified the other primary barriers to the transition of ALWHs to adult care including the family鈥檚 inadequate understanding of transition, with familial consent being a prerequisite for transition (n鈥�=鈥�35).

Perceiving immature. Some families perceived their ALWHs as not mature enough to make independent decisions, which reinforced the family鈥檚 exclusive decision-making role. This family-centric approach, which undermines the autonomy of ALWHs, emerged as a key factor contributing to the inefficacy of the transition process. (P15, ALWH, FGD, Wolaita Sodo), highlighted:

In my view, the major problem is the family. Most of the time my family doesn鈥檛 believe that I have grown up. They even think of me as a child though my age reaching 19 years. So, for me, the transition to adult care is only possible if my parents agree. So, if they didn鈥檛 let me transit then I can鈥檛. So, I believe that family is the major barrier.

Stigma. Further exacerbates challenges and may contribute to feelings of shame, psychological distress, and discrimination within the family. Many ALWHs (n鈥�=鈥�30) shared experiences where this stigma led to their disengagement from care. (P8, ALWH, FGD, Wolaita Sodo) expressed:

I wanted to run away, but to where? My aunts and uncles are exactly like my grandparents. My family didn鈥檛 see me as equal to my brothers. They made me feel like I was not needed anywhere and back then I didn鈥檛 even know why. I tried to commit suicide but survived. They, including my father, continue to shame me [having HIV]鈥�so why care for being healthy and this transition, 鈥�now I don鈥檛 care.

From a family, these insights shed light on the intricate dynamics influencing the experiences of families and ALWHs during the transition, providing a nuanced understanding of the challenges faced.

While friends can initially serve as a vital source of support, offering protection against negative life events for ALWHs, the dynamics shift with the challenges associated with HIV status. As the demands of HIV-related treatment and frequent illnesses persist, friends may withdraw support, transitioning to stigmatizing behaviors, thereby hurting the care transition. This complex interaction shows how peer relationships change over time. It emphasizes the need for ongoing, stigma-free support systems to help adolescents living with HIV as they move into adult clinics.

鈥溾��.Through time they decreased support for me. They don鈥檛 encourage me, or accompany me to school or other places. I was worried and stressed.鈥� (P44, ALWH, IDI, Jinka).

鈥濃��.Once I was very sick due to not properly taking the drug in the changed care unit. I stayed at home for a long time. Then, I went to play with my friend in the neighborhood. My friend started to distance himself from me. I thought about suicide once. I was confused and worried.鈥� (P18, ALWH, IDI, Wolaita Sodo).

Negative peer pressure. The secondary factor, 鈥渘egative peer pressure鈥� is associated with substance abuse and non-adherence to treatment. Peers, initially a potential source of support, may turn into a stigmatizing force, diminishing the well-being of ALWHs in transition and may contribute to adverse health outcomes. Many participants (n鈥�=鈥�30) voiced out that negative peer pressure constitutes a potent force influencing ALWHs, steering them toward adverse outcomes. This influence may manifest in experimentation with substance abuse. Additionally, the consequences extend to kipping important follow-ups or medications putting individuals at greater health risk. This makes it harder for them to manage their health fully during the transition process. (P17, ALWH, FGD, Wolaita) explained:

My friends influenced me to start using khat and alcohol [to feel better and distracted from HIV], then I stopped taking medications, and my health condition became complicated after I joined the other care unit.

鈥溾��.I鈥檓 afraid to tell you that I was consuming alcohol at the invitation of my schoolmate. After starting alcohol, I stopped the medication and even visited the hospital, which caused me serious illnesses. 鈥�.Now my doctor is very concerned about my health and my shift to another clinic.鈥� (P43, ALW, IDI, Sawula).

System barriers

The sub-theme of systemic barriers deepens our comprehension of the persisting barriers obstructing ALWHs and their families from initiating a seamless transition between pediatric and adult healthcare services. These barriers encompass deficiencies in systems for disclosing HIV status. The lack of guidelines to assess readiness, insufficient guidance throughout the transition process, and challenges in ensuring ALWHs receive consistent treatments and follow-up. Furthermore, there is a notable absence of an early transition process provided by healthcare providers, and a deficiency in youth-friendly healthcare providers and facilities adds to these hindrances.

Lack of timely disclosure. Many ALWHs (n鈥�=鈥�31) highlighted that the timely disclosure of their HIV status may help them accept the disease, start treatment on time, and adhere to treatment better. If there is a lack of timely disclosure, ALWHs exhibit resistance to transition, especially when the disclosure process is prolonged over several years. Delays in disclosure, particularly beyond the recommended age of 11 years, raise uncertainties about the success of the transition from the perspective of ALWHs.

鈥淚 didn鈥檛 know my HIV status until I was 15 years old and that could be a reason for me not transiting to the adult clinic 鈥�as 4 to 5 years my family was struggling to accept my HIV [positive] status .鈥� (P19, ALWH, IDI, AMGH).

鈥�I think the disease should be disclosed at the age of 7, 鈥︹�� Telling me early will help me accept my diagnosis and its management between two services for my better health.鈥� (P20, ALWH, FGD, Jinka).

鈥沦迟颈濒濒, the challenge remains since the status is not disclosed. I will disclose this to her when she gets mature. As I said now, she started asking why I always take medicine that none of my school friends not taking.鈥� (P6, mother, IDI, Sawula).

Absence of guidelines for transition. Participants鈥� narratives reveal a substantial deficiency in the healthcare system concerning the transition of ALWHs, specifically in the absence of structured guidelines addressing planning transition, early HIV status disclosure, preparedness, and guidance for ALWHs and their parents. Half of the participants (n鈥�=鈥�26) highlighted experiencing communication gaps and role ambiguity in the transition process, creating barriers for ALWHs to initiate the transition smoothly. These challenges impede the handover of patients between services, causing confusion and hindering a seamless transition. These insights underscore the pressing need for a universally adopted, clear protocol, and supportive materials to enhance the overall transition experience for ALWHs within the healthcare system.

(P21, ALWH, IDI, AMGH) articulated this as:

鈥�Let me tell you what I saw when I went to the hospital, there was no agreement among the doctors regarding my shift to the next clinic. The doctor鈥檚 disagreement about my care shift into adult care left me confused about who to listen to and who was correct.

The participants鈥� narratives highlighted the inadequate advice from providers on awareness of the transition process, associated with the absence of guidelines. In the realm of healthcare-related barriers, inadequacies in advice provision from healthcare providers emerged as a huge concern ( n鈥�=鈥�43). ALWHs expressed that information regarding the importance of transition and the process of transition was insufficient, contributing to confusion and a lack of familiarity. As one participant verbalized, 鈥淲hen I reached the adolescent age, they provided me with some information[superficially] about the transition. Even I was confused about the term transition.鈥滲ut, I don鈥檛 think it is enough. (P22, ALWH, ID, Jinka)

The disrespectful approach. The narratives of ALWHs ( n鈥�=鈥�34) revealed that attending the hospital alone is associated with suboptimal treatment experiences. Additionally, participants highlighted that health professionals often lacked respect when ALWHs visited unaccompanied, not affording them the same value as older adults. This disrespectful treatment may be linked to fear and can contribute to discouraging independent follow-up among ALWHs. As articulated by one of the participants, 鈥�The health care provider鈥檚 approach could be good when we came with family, but it could be bad if we came alone. Due to this, we fear to come[adult clinic] here and this delays our follow-up and treatment鈥�.鈥� (P23, ALWH, FGD, Wolaita Sodo)

Another participant explained,鈥� When we go to receive treatment at different units in the facility or to collect pills, people [healthcare providers] do not give value to us. They value adult people and serve them first and with difference [more respect than us]. Due to this, we feel not to come again here [at the adult healthcare facility闭.鈥�

Another participant shared her experiences, 鈥淚t鈥檚 good to treat all of us equally, but they see you as a baby and always serve adults first. This will hurt your heart [to come back闭.鈥� (P44, ALWH, FGD, Sawula). A few participants also felt disrespected when their confidentially in not respected by the adult healthcare services or staff. One of the participants expressed her concern about being easily identified as an HIV-positive patient, as there is no confidentiality of their status. She explained, 鈥淚f you go to the card room[file record room], they serve other patients [adult patients]. As [HIV] positive people, we don鈥檛 like to be noticed in some special ques of HIV card room, So I feel discouraged to use adult care services .鈥� (P24, ALWH, IDI, Sawula).

The absence of separate clinics. Some participants expressed that, due to the absence of a separate clinic for adolescents, they hesitate to share their secrets or personal concerns, which could impact the transition. Lack of private, secured, and separate space for adolescents during the treatment follow-up could interfere transition process. (P33, ALWH, FGD, Sawula), expressed:

鈥�.The difference is the medication type I receive, but there is no designated place for children and adults. So, whoever comes will be treated in the same room and I become shy to share our concerns.

Facilitators

Self-acceptance as adult

Participants who demonstrated self-acceptance were more likely to report a successful transition to adult care. This correlation suggests that self-acceptance may play a role in facilitating transition, but further research is needed to establish causality. Participants鈥� narratives revealed that the transition is acknowledged to be a gradual process rather than an overnight event, consensus exists (n鈥�=鈥�28). ALWHs play a pivotal role in ensuring a smoother transition. This is achieved through qualities such as recognizing their responsibility as adults for their treatment. They exhibit self-reliance in treatment adherence and follow-up. They also take an active role in the transition by accepting more adult responsibilities. (P9, ALWH, IDI, Jinka) explained this: 鈥淎ccepting oneself as an adult motivates you during the transition鈥�when we feel mature [like adult] and we become accountable for our treatment adherence and getting better more.鈥� Another participant added, 鈥淲hen you feel like an adult, you decrease your dependence on family for taking pills timely and go to an adult clinic for a refill.鈥� (P20, ALWH, FGD, Jinka). One more participant showed his readiness for the transition process as an adult mature person, 鈥�To move from the first-level children to the second level of an adult unit, we have to [be responsible] and use medication properly [as advised闭.鈥� (P13, ALWH, FGD, Jinka).

A desire to experience new things

The narratives from adolescents highlighted their motivation, driven by an inherent curiosity for new experiences and a genuine desire to participate in various aspects of adult HIV-related services. The participants expressed eagerness to explore adult healthcare services for HIV, unveiling a nuanced aspect of adolescence. This enthusiasm for facing new challenges serves as a key motivator for the transition to adult care, emphasizing the dynamic nature of their transition. (P44, ALWH, IDI, Jinka), expressed his desire as:

鈥�My friends and I need to see [experience] new things [services], so I want to experience new exposure in large healthcare sites for my treatment and to receive medication in an adult care unit.鈥� Another participant expressed:

鈥淭he transition to adult-oriented is exciting as it does not need a frequent visit to the clinic. Currently, I am actively participating in talks about my treatment with my doctor, and feel proud to have an open discussion about my health and wellness with the doctor. 鈥� (P49, ALWH, FGD, Jinka).

Supportive family

Family support emerges as a primary support system for the majority of participants (n-35), fostering trust and close interaction in managing their lives with HIV. Emotional and psychological assistance from close family members plays a crucial role in helping adolescents cope with challenges such as despair, disappointment, and future uncertainties. The finding underscores the significance of family support, with psychosocial assistance, medication reminders, advice, and encouragement contributing to the optimistic transition into adult care for better health outcomes. 鈥淚 receive psychological support from my family. They remind me to take medications timely. In addition, they always give advice and encouragement, helping me not to fear and being said because of being an HIV patient.鈥� (P37, ALWH, IDI, Sawula)

鈥淚 am the happiest person ever. Everyone in the family protects me and makes sure I am never sad or feeling down. I am feeling okay with the transition鈥� and happy to get better more鈥� in future.鈥� (P46, ALWH, FGD, Jinka).

A parent participant expressed, 鈥�As a mother, I see the shift to adult care as a way to ensure my son鈥檚 health is good and it is also a good opportunity for him to start responsibility for himself and others too.鈥� (P8, mother, IDI, AMGH).

鈥淭he process of shifting my daughter was not easy. But it鈥檚 been good with appointments and new faces, we will try to be committed to overcoming each challenge together.鈥� (P1, mother, IDI, Wolita Sodo).

Friendly healthcare services

Youth-friendly healthcare services, this category emerged from the participants鈥� excerpts (n-20) highlighted the positive impact of informed support and the motivational influence of open discussions and supportive advice during the transition. The active support of healthcare professionals is creating a sense of a friendly environment within the clinic and facilitating a smooth transition. Additionally, the psycho-social group鈥檚 role organized by the clinic in addressing ALWHs鈥� unique emotional, spiritual, cognitive, social, and physical needs is clear, fostering connections and boosting confidence.

Informed support and promising outcome. The participants highlighted interaction with competent healthcare providers plays a role in a successful transition. This connection is linked to enhanced clinical outcomes such as increased immunity status and reduced viral load. The prospect of improved health outcomes serves as a motivational factor, encouraging adolescents towards a successful transition and adherence to care. as expressed by (P9, ALWH, IDI, Jinka)

If they saw the change in their CD4 level and received good advice given by a competent health professional about the possibilities of a cure, and improvements in CD4 level, we feel very happy and motivated. My good health motivates me to stick to care and follow the [competent] good doctor鈥檚 orders.

Another participant shared 鈥�The main thing that makes the successful shift to the adult unit is the [competent and friendly] advice of health professionals for the future鈥� as a result, there is a smooth transition and you worry less 鈥� and health professionals motivate you.鈥� (P30, ALWH, IDI, Jinka).

In addition, healthcare professionals play a pivotal role in the successful transition of adolescents with HIV. Their unwavering support, similar to family, is crucial as adolescents shift from child care to adult care. Under the guidance of supportive healthcare providers, the clinic becomes a welcoming home for ALWHs, encouraging open expression. These specific instances highlight the vital role of healthcare professionals in ensuring a smooth transition and enhancing adherence to the treatment across their life span. As one of the participants expressed:

鈥�They support me a lot. They are like families. I reached this level because of their support and care. I thank them. Even they called me to remind me about how am I doing or taking medication timely. When I became stressed I came to sister Mesert to even reduce my stress. This is like home for me.鈥� (P40, ALWH, IDI, Wolaita Sodo).

鈥溾赌�.笔别谤蝉辞苍补濒濒测, I want to get treatment from this clinic [pediatric] only as my doctor and other staff know me. However, the initial support I received from health professionals [adult health] and my family鈥檚 guidance. I trust they will provide effective care, which greatly assist me in achieving a successful transition.鈥� (P2, ALWH, IDI, Jinka).

Flexible appointment scheduling. ALWHs regarded flexible appointment scheduling as crucial (n鈥�=鈥�26). The collective preference for follow-up visits during non-school hours was met by scheduling appointments on weekends, ensuring no disruption to academic commitments. This adaptable approach not only promotes ongoing care but also reduces instances of lost follow-ups, playing a significant role in facilitating a successful transition for ALWHs. (P51, ALWH, FGD, Wolaita Sodo) explained:

鈥�.Due to school, if I can鈥檛 make it from Monday to Friday, they work and appoint me on Saturday and Sunday. Previously I had to miss school to collect medication. This change encouraged me to continue with the care.

ALWHs preferred less frequent hospital visits ( n-33). The findings from narratives highlighted that initially, treatment follow-ups occur monthly, extending for those with good adherence. ALWHs experienced a notable reduction in hospital visits, with appointments scheduled every three or six months. This adjusted schedule aligns with the preferences of ALWHs and reflects a positive aspect of the transition. (P2, ALWH, IDI, Jinka) said.

Previously, I came every month to collect the pills. However, after I changed to adult care, I came every three months to collect the medication. I don鈥檛 need to frequently visit the hospital. This is a great change.

Psycho-social support groups. The participants鈥� narrative (n-35) revealed that the psychosocial support group organized by pediatric care services was found to be instrumental for ALWHs in managing their HIV and other psychosocial needs. The support group offers a platform for sharing experiences, emotions, and learning about the disease, fostering confidence, self-efficacy and facilitating the transition, and enhancing the well-being of ALWHs. As one of the participants explained,

鈥淚 was able to improve myself through the support and advice I get from this psychosocial group. I became a better person鈥� to handle my negative emotions. I wouldn鈥檛 know about the disease if this group was not here. It makes me ready for the transition. I am incredibly grateful to the psychosocial group.鈥� (P20, ALWH, FGD, Jinka).

Discussion

This research aimed to explore the barriers and facilitators of transitioning ALWHs from pediatric to adult care in the under-resourced setting of Southern Ethiopia. Understanding the barriers and facilitators of transitioning ALWHs is crucial for improving healthcare services. This helps ensure better health outcomes for this vulnerable population and contributes to the limited body of research on the transition of care for ALWHs from pediatric to adult-oriented clinics. This investigation has deepened our comprehension, highlighting the intricate nature of the transition as influenced by both positive and negative factors stemming from individuals, family dynamics, peer interactions, and the healthcare system. The thematic exploration, particularly focusing on barriers and facilitators of transition, explained a dual perspective, delineating the transition of ALWHs into barriers and facilitators. Leveraging insights from both dimensions, the ensuing section extrapolates implications for the well-being of ALWHs. The study highlights a pervasive lack of awareness about the transition from pediatric to adult healthcare for ALWHs, aligning with existing literature. Acknowledging the potential impact of timely information acts as a facilitator can improve acceptance and expedite access to adult care services. Targeted interventions emphasizing comprehensive and timely information provision can bridge knowledge gaps and surmount obstacles in the transition. Implications for healthcare strategies include prioritizing education and communication to empower ALWHs for a seamless transition.

Some participants perceived HIV/AIDS as less severe over time, which led to indifference toward medication adherence. They associated severity with access to nutritious food. The finding is consistent with a study in Western Uganda [27]. This underscores the need for nuanced interventions addressing evolving perceptions and socio-economic influences on treatment attitudes. Optimizing healthcare for individuals with HIV/AIDS requires a tailored, comprehensive approach to enhance treatment adherence and overall well-being among ALWHs.

The psychosocial struggle faced by ALWHs and their parents introduces both obstacles and potential facilitators of transition to adult healthcare. Emotional distress, stigma, and feelings of hopelessness make up barriers that impede a smooth transition. The fear of viral escalation and reduced self-protective abilities further stress the emotional burden. Psychosocial distress, a key influencer, may contribute to delays in transition. Conversely, acknowledging these psychosocial struggles offers an opportunity for facilitators in targeted interventions [28,29,30]. Addressing psychosocial distress and fostering emotional well-being can mitigate hurdles and ensure sustained engagement with healthcare services. Interventions that address self-blame and unfavorable comparisons are crucial for enhancing self-esteem and motivation during this critical transition.

In essence, addressing the psychosocial struggles is imperative for holistic support for a successful transition. Interventions should focus on mitigating emotional distress, such as loneliness, fostering emotional well-being, and dispelling the cycle of self-blame. These targeted efforts are crucial for facilitating a smoother transition to adult healthcare and ensuring sustained engagement with healthcare services among ALWHs. The implications underscore the need for healthcare strategies that prioritize the intricate psychosocial dynamics inherent in this critical phase of transition.

Interpersonal dynamics within family circles (social) play a crucial role, with family rejection and disbelief in ALWHs鈥� being responsible for their care hindering the transition. This is in contrast to studies conducted in Zambia [31]. Peers emerge as key players in supporting transition, and lack of peer support contributes to discouragement and negative peer pressure. This aligns with findings in Uganda [30]. One of the novel findings from this study revealed that the impact of ALWHs鈥� romantic relationships on treatment adherence during the transition to adult healthcare for adolescents with HIV is a crucial aspect that warrants deeper consideration. The findings illuminate the complex interplay between personal relationships and healthcare priorities. The fear of partner loss or distraction resulting from discordant HIV statuses adds a layer of vulnerability to medication adherence and safe sex practices at this age. This phenomenon raises broader questions about the psychosocial aspects of managing HIV in the context of evolving relationships in this age. Moreover, stigma emerges as a barrier across family, community, healthcare, and school settings, impeding treatment follow-up and care retention, similar to experiences reported in Tanzania [32].

The study underscores the pivotal role of a youth-friendly healthcare system in facilitating a smooth transition for ALWHs from pediatric to adult care services; thereby enhancing their physical and mental well-being. A well-organized transition, supported by skilled healthcare providers, can greatly benefit adolescents with HIV. By focusing on recommended treatments, good communication, and collaboration between services, this approach improves acceptance, early access, and adherence to treatment and follow-ups in adult care. Conversely, if these positive characteristics transform into barriers, they may impede the transition.

Healthcare-related barriers including inadequate advice, disrespectful provider approaches, the absence of distinct adolescent clinics, and a lack of a transition protocol, mirroring issues found in patient-friendly organizations [33, 34]. The absence of a structured protocol is associated with inappropriate initiation, deficient knowledge, and conflicting decisions. This aligns with findings from studies conducted in Ghana and Cambodia [33, 35]. These barriers underscore the critical need for comprehensive interventions to address healthcare-related challenges, ensuring a conducive environment for the successful transition of ALWHs.

The delayed disclosure of HIV status to ALWHs, as identified in this study and corroborated by findings in Thailand [36], highlights a significant barrier to a successful transition. This result underscores the importance of adhering to structured guidelines aligned with global standards, including those delineated by the World Health Organization (WHO) and national guidelines in Ethiopia. Consistent adherence to the recommended age (national guidelines) of at least 11 years for informing adolescents about their HIV status is imperative [37]. However, the complex process of communicating this information to a child necessitates building trust with parents and involving them actively in delivering the news collaboratively. This strategic approach helps with an early transition and prepares both adolescents with HIV and their parents. It encourages acceptance of adult care services and ensures treatment adherence throughout their lives. The study revealed that facilitators promoting adherence to treatment and follow-ups for ALWHs in pediatric care services include the availability of psychosocial support groups and flexible appointments, addressing both academic and healthcare needs [29, 30]. Psychosocial groups within pediatric services played a crucial role in empowering ALWHs to accept their condition and actively engage with appropriate healthcare services. This underscores the necessity to extend similar psycho-social support structures to adolescents, young adults, and their parents within adult health services. This proactive measure is essential to counteract negative influences hindering healthcare access and enhancing their adherence to treatment and overall well-being. Moreover, the study identified concerns ALWHs regarding the potential compromise of their privacy in adult care services. Consequently, many of them endure stigma and psycho-social distress, which deters them from accessing adult healthcare facilities for essential treatment and follow-ups. To address these challenges, participants strongly advocated for the establishment of specialized clinics tailored to meet the unique needs of ALWHs. This recommendation aligns with a comparable recommendation from West Africa (43), highlighting the necessity of creating dedicated healthcare spaces to enhance the well-being and healthcare experience of ALWHs.

Strengths and limitations of the study

This study boasts several notable strengths. Firstly, recognizing the sensitivity of the topic, the study adopted a phenomenological study design, enabling in-depth exploration of the lived experiences of both ALWHs and their parents. Secondly, the robustness of the data collection methodology ensured a comprehensive gathering of insights from a diverse array of participants, employing IDIs and FDGs conducted across eight healthcare facilities. Lastly, the study employed meticulous content analysis techniques, specifically Max and Van, to provide thorough and nuanced answers to the research question.

However, a notable limitation involves the absence of triangulation, as the study did not incorporate the perspectives of healthcare providers. The inclusion of this viewpoint could have offered valuable insights into health system-level barriers and facilitators of the transition of HIV-positive ALWHs from pediatric to adult-oriented clinics. In addition, the study did not address how factors change over time, particularly as adolescents mature and their needs evolve. This could indicate how the transition process unfolds over time.

Conclusion

The study findings reveal that transitioning adolescents with HIV to adult clinics is complex. Many factors contribute to this complexity, including adolescents, healthcare providers, families, and peers, which can either help or hinder the transition. Successful transitions require a strong commitment from adolescents to follow their treatment and attend follow-ups. Smooth transitions also depend on teamwork between adolescents, their families, and healthcare providers. This emphasizes the need for proper preparation and effective solutions to challenges during the transition to adult care.