Study design and setting

This was a descriptive qualitative study. This design was suitable as it allowed investigators to present straight descriptions of the experiences of participants and staying close to the data without engaging in deep interpretations [10]. This study was conducted at the AIDs Support Organization (TASO) Centre, located in Mulago. The center provides services for patients living within a 75 km radius reach and its catchment area covers the districts of Kampala, Mityana, Mukono, and Wakiso. TASO Mulago provides HIV/AIDS clinical and psychological services to children, adolescents, youths, and adults living with HIV/AIDS. Examples of the services include adherence counseling, condom education and distribution, health education, adherence measurement, tuberculosis screening, opportunistic infections examinations, and laboratory investigations. The clinic days for AYPLHIV are Tuesday, Wednesday, and Thursday. On clinic days, about 60–80 patients come for ART refills and other HIV/AIDS services.

Study participants

The study was conducted among AYPLHIV aged 15–24 years, that were receiving care and treatment services from TASO. To be included in the study, prospective participants had to be aged 15–24 years, have lived with HIV for at least six months, able to speak English or Luganda, receiving care and treatment from the TASO-Uganda Mulago branch, able to provide informed consent or assent, and willing to participate. Patients who were unable to communicate verbally were excluded. Participants were purposefully identified from those attending adolescent-friendly care services in the study site. Participants were identified with the help of health personnel in the clinics.

Data collection

Data collection took place from 30^th July to 7^th August 2024. One time one-on-one in person interviews were conducted with consenting participants at the health facility by I.N. The interviews were conducted in a private room at the study site that offered sufficient auditory privacy, and counseling services were readily available in case any participant experienced emotional distress during the interview. The interview guide used during the interview was developed using guidance provided by the developers of the story theory [9]. The interview guide was piloted in a different health facility from the one where data were collected, and adjustments were made based on the feedback from the pre-test. The interview guide contained items that invited to reflect on their present and past experiences, describe their future hopes and dreams. The interviewer listened to each participant’s story to identify the high, low, and turning points in their health experience. Each interview was audio recorded after obtaining permission from the participant. The interview time ranged from 15 to 44 minutes. Additionally, each participant was requested to recall their experiences from the time they got to know their HIV positive status. Each participant was requested to map these experiences on a plain piece of paper provided by the interviewer. Specifically, they were instructed to mark the high points – times when things were going well, low points- when things were not going well, and turning points – deciding moments or shifts in perspective that altered life direction [8]. Before ending the interview, the interviewer looked over the story path created by each participant to ensure accuracy of what had been written. After the interview, each participant was paid 5,000 Uganda shillings (about 1.3 US dollars) to compensate for their time. At the beginning of the study, the investigators had planned to recruit 15–20 participants. However, after conducting 15 interviews, data collection was stopped because no new experiences were emerging from the interviews, indicating that a point of data saturation had been attained [11]. One participant dropped off from the study due personal reasons. This paper reports findings from analysis of story paths drawn by 15 participants.

Data management and analysis

The 11 English audio recordings and four Luganda recordings were transcribed and translated by I.N. and A.N., who are fluent in both languages and have extensive experience in qualitative research methods. Each transcript was cross-checked against the original recording to ensure accuracy and completeness. To gain an overall understanding of the data, OCP read each of transcripts. OCP has extensive experience in the design, conduct, and reporting of qualitative research and has completed graduate-level coursework in qualitative research. OCP applied a deductive coding approach to manually identify the high points, low points, and turning points in the health trajectories of adolescents and young people living with HIV (AYPLHIV). During coding, these key points were highlighted using different colors to distinguish them. Once all transcripts were coded, the codes were grouped into categories based on whether they represented high, low, or turning points. In addition, each individual story path was manually analyzed to further identify these points. A summary of the findings, including the identified high, low, and turning points, is presented in the results section, accompanied by illustrative quotes. However, it is important to note that although we made efforts to bracket our own perceptions during the interviews, data analysis, and reporting of the findings, the investigators’ perspectives may still have inadvertently influenced participants’ responses during the one-on-one interviews, as well as the analysis and reporting processes.

Ethics approval

Ethics approval was obtained from the Makerere University School of Health Sciences Research Ethics Committee (MAKSHSREC-2024–679), and administrative clearance was obtained from the management of TASO Mulago branch. In addition, written informed consent was obtained from the participants before they participated in the study. Furthermore, assent was sought from participants who were less than 18 years old, and their parents or guardians were requested to provide permission for their child to be involved in the study.

High points

Generally, moments of social and emotional support played a crucial role, with participants frequently mentioning the encouragement and care received from family members, health providers, school personnel, and friends as uplifting.

“We had a doctor here she was called… she also helped me in times when I felt like why am I taking this medicine, she used to call me every day she used to follow me up, in fact she used to call me for those first 2 weeks she used to call me every day to ask how you taken the medicine? how are you feeling now? She even used to give some ka money. For the first weeks when I came back, she told me now you see you are fine the viral load is going low, she told me next time”. (Participant 5; Male, 21 years)

“…when I was well after the sickness, they brought me here I started taking drugs then they took me to my brothers place …to gain confidence, he used to counsel me, …he used to take me to places like forest park those interesting places and he told me everything is going to be okay nothing is going to change apart from just taking drugs… those two months made me feel confident I realized that everything is okay I will be fine then I let go, I had to accept the situation”. (Participant 5; Male, 21 years)

“…she always advised me and whenever she’s seeing that... people discussed about HIV things and then maybe sometimes the discussion will just come as one of the disease people are learning in biology. But you know, you feel as if they are talking about you, this kind of thing. She would know that it is touching me. Sometimes she comes after the lesson and says, are you okay? Are you fine? She would want to find out how you are. Yeah. And then also during time for drugs… she’s the one who was now reminding me. If we are in prep time and we are still revising, and she has seen it’s 9 o’clock. She will tap me. She’ll come and say, can we go? She will not tell anyone where we are going. She just holds my hand and moves out, as if we are going maybe for a short call or to discuss something. Yet she’s reminding me, she wants me to go and take my drugs. Then she comes back and sits in the class”. (Participant 12, Female, 24 years)

In addition, securing a source of income, disclosing HIV status, and receiving positive reinforcement from loved ones also emerged as meaningful high points in the experiences of adolescent and young people living with HIV.

“…having friends who encourage you to continue doing what you are doing because i have a friend who is older, we met in school, he stays in...(name of location omitted) when we talk, he tells me to continue taking my medicine. He gives me hope”. (Participant 8; Male, 19 years).

Low points

Most of participants experienced low moments upon discovering their HIV-positive status. Many struggled with adherence to medication due to stigma, forgetfulness, or the challenges posed by boarding school environments. Experiences of rejection, whether from friends, romantic partners, or the workplace, were also commonly reported, illustrating the pervasive impact of stigma and discrimination.

“The challenges I have faced there is a lady I used to work with, she kept telling my customers that am HIV positive I felt really bad because they started discriminating me, disrespecting me but I left that place where I did not feel welcomed that is the only challenge I have faced”. (Participant 3, Female, 23 years)

“Automatically bad, I became emotional, I stigmatized myself, I hated everyone around me, that’s how it was”. (Participant 4, Female, 24 years)

Additionally, several participants expressed suicidal ideation, feelings of hopelessness, and self-isolation, underscoring the severe psychological toll associated with HIV diagnosis. Falling sick with illnesses related or unrelated to HIV was also a common low point for this population of adolescents as it increased their fears and worries of losing their lives.

“I actually felt like committing suicide, it was too much for me and the person that gave it to me actually knew that was the worst thing for me to bear but I went through therapy. I had like 3months of therapy so I just had to accept my condition and move on…. I was broken and I was like did this person not know he was sick. So, I don’t know (crying). I went through therapy, I was so depressed I couldn’t open up to anyone, couldn’t open up to my mum so i told a friend and a friend convinced me to at least tell my mother”. (Participant 1, Female, 22 years)

“…of course (sighs) hmmn hmmn, I felt like it was over for me, I felt like the world had ended, eeh and I felt like even killing myself it was really a bad situation cause I was totally sick at that time the body was so soft, it had made me go down so I felt like I won’t even get well even if I take tablets but later on I was counselled and got some help”. (Participant 5; Male, 21 years)

Turning points

The turning points reported by participants predominantly revolve around key moments of social support, counseling, and personal acceptance of their HIV-positive status. Many participants identified receiving counseling as a pivotal moment in their lives, helping them cope with their diagnosis, adhere to medication, and manage emotional distress.

“…I was feeling bad they discriminated me, I was not feeling okay even I wanted to change the school yea but later on our sister those nuns they were like no you do this they counselled me and the nurse was there for me and some of my friends because there were some 2 girls who were also swallowing [taking antiretroviral medicines], they were there for me and I picked up. It wasn’t easy….the bigger part was counselling because I used to go to the dormitory and cry after crying, I sleep yea like that. Even if you tried to concentrate and read it wasn’t easy. So I used to cry sleep, cry sleep” (Participant 7; Female, 23 years)

“When the counselor spoke to me and gave me hope that I can still live with it and told me, you just continue with your medication, like do not abandon yourself from people, you continue speaking to them because there is nothing, like if you take your medication, nothing really happens and maybe if... anything has gone wrong, come back and speak to me. If you cannot tell your friend, come back and open up to me” (Participant 14; Female, 21 years)

Acceptance of HIV status and disclosure to supportive individuals, including family members, friends, and peers living with HIV, also played a crucial role in fostering resilience and instilling hope.

“I accepted it, acceptance was the major thing for me and when I interact with some of my friends that I met here that are HIV positive, it gave me a relief because they have this thing of its just, just take your medication and move on just take the tablet and the rest is okay and the fact that I don’t have any other health problem apart from it yea. So, they made it simpler for me, taking my medication and accepting to live with it, only the two things that I have to follow” (Participant 1, Female, 22 years)

“What matters most, the first thing was acceptance that one gave me hard time but…it came after some good time because even I finished my candidate classes when am in day school when I had not felt like I can keep my own medicine at school. I felt like aah aah acceptance came when I was in A level that’s when I accepted, I was like aahh now come what may am not going backwards it has come and it will never go”. (Participant 5; Male, 21 years)

Conclusion

Story theory provides a valuable framework for understanding the health experiences of adolescents and young people living with HIV and for delivering care that is tailored to their unique individual narratives. Using this middle-range theory, our study revealed that AYPLHIV benefit greatly from social support provided by friends, family, school authorities, and peers. At the same time, many experienced emotional distresses after learning their HIV-positive status, faced challenges with medication adherence, and, in some cases, struggled with suicidal ideation. Counseling emerged as a crucial factor in helping nearly every participant improve their health trajectory. The findings from this study highlight the potential of story theory to enhance adolescent-friendly HIV care services. Future research should explore how integrating story theory into these services could impact the health outcomes of this population.