Low-transition rates in human immunodeficiency virus-infected adolescents: A cross-sectional mixed study of pediatric to adult care transition in Uganda

Abstract

BACKGROUND

Transition is a critical period for adolescents as they begin to assume responsibility for their own health. Similarly, the shift from pediatric to adult healthcare represents a vulnerable phase, marked by unique challenges in adolescent health care. Despite its importance, only a few studies have explored healthcare transition among adolescents in Uganda.

AIM

To identify factors associated with the transition to adult human immunodeficiency virus (HIV)-centered care among adolescents attending HIV/AIDS clinics in Uganda.

METHODS

A cross-sectional mixed-methods study was conducted among 265 adolescents, randomly selected from three antiretroviral therapy (ART) clinics, using a structured questionnaire. Focus group discussions and key informant interviews were conducted. Individuals aged 10-20 years who were actively enrolled in the ART program between January 4, 2022 and January 30, 2023 were recruited. The primary outcome of interest was the transition to adult care. Bivariate and multivariate analyses were performed for quantitative data, while content analysis was used to analyze qualitative data.

RESULTS

The prevalence of transition to adult care was 40.6%. Most participants were male (53.6%) and fell within the 13-15 age group (35.6%). Multivariate logistic regression analysis identified several factors significantly associated with transition to adult care: Age group 10-12 years [prevalence ratio (PR) = 2.525, 95%CI: 2.121-2.944, P = 0.002], Age group 13-15 years (PR = 1.900, 95%CI: 1.196-3.416, P = 0.001), successful viral load suppression (PR = 1.534, 95%CI: 1.173-1.648, P = 0.016), disclosure of HIV status to relatives (PR = 5.001, 95%CI: 3.411-3.611, P = 0.000), being prepared for transitioning (PR = 5.417, 95%CI: 3.468-7.135, P = 0.041) and having skilled pediatric caregivers (PR = 3.724, 95%CI: 2.084-4.105, P = 0.005).

CONCLUSION

Transition to adult care among adolescents was low. Improving transition outcomes may require strengthening individual support within the family context and integrating transition-focused care into existing specialized clinical settings to enhance the delivery of adolescent-friendly services.

Key Words: Human immunodeficiency virus-infected adolescents; Pediatric to adult care transition; Cross section study; Human immunodeficiency virus epidemiology; Multidisciplinary team; Uganda

Core Tip: Transitioning adolescents living with human immunodeficiency virus (HIV) to adult-centered care in Uganda remains a critical challenge, with transition rates remaining low. These findings have important implications for improving adolescent healthcare. Specifically: (1) Integrating transition care into existing clinical settings, and (2) Strengthening family support systems may enhance transition outcomes. Additionally, targeted interventions addressing the identified predictors of successful transition can further improve outcomes. These insights can guide policymakers and healthcare practitioners in Uganda and similar settings.

INTRODUCTION

As of 2023, approximately 39.9 million people worldwide were living with human immunodeficiency virus (PLWHIV), with 38.6 million of them being adults. Eastern and Southern Africa is home to 20.8 million people living with human immunodeficiency virus (HIV)/acquired immunodeficiency syndrome (AIDS). Despite progress in HIV treatment and prevention, AIDS remains a leading cause of death among adolescents aged 10-19 years, claiming 32000 lives in 2023. This age group accounted for roughly 5% of the 630000 deaths attributed to AIDS-related illnesses worldwide that year[1,2]. Antiretroviral therapy (ART) is a cornerstone of HIV management; however, its effectiveness can be compromised by several challenges, including the transition to adult HIV care among pediatric and adolescent populations, complex treatment protocols, adverse effects and socio-economic barriers[3,4].

In most sub-Saharan African countries, healthcare systems are not specifically designed to meet the needs of adolescent populations[5]. Adolescent medicine remains underdeveloped and largely inaccessible. As a result, many HIV clinics are unable to operate at their full potential, creating significant barriers to a smooth transition from pediatric to adult care, hence compromising treatment outcomes. With increased access to ART and the resulting survival of more adolescents into adulthood, it is recommended that all eligible adolescents undergo a planned and purposeful transition to adult-focused services through a carefully structured process[6]. Adolescence, the developmental phase between childhood (under 10 years) and adulthood (over 19 years), is marked by significant physical, psychological, and social changes at the individual level[7]. This phase is also characterized by physiological and sexual changes, identity development, conflicts over autonomy, feelings of invincibility, and heightened risk-taking behaviors[8]. Therefore, it is important to understand factors that interrupt the transition of eligible HIV/AIDS adolescents into adulthood HIV care services[9].

Uganda’s HIV epidemic is among the largest in sub-Saharan Africa. In 2022, about 1.4 million PLWHIV and about 1210906 were on ART. A total of 166000 adolescents are estimated to be living with HIV/AIDS[10]. In Uganda, the HIV incidence per 1000 population (all ages) is 0.86, translating to 38000 people newly infected with HIV in 2023, or 730 new infections weekly. This may compromise Uganda’s goal to end AIDS by 2030[11]. The HIV prevalence in Uganda is 5.1% and the 80% of new infections among young people were among adolescent girls[12]. The country is one of the world's thirty (30) high-burden countries for tuberculosis/HIV co-infection[13]. Similar to other sub-Saharan African countries, Uganda spends about 14% of its total expenditure on HIV and AIDS. Uganda achieved 90-94-94 performance against the Joint United Nations Program on HIV/AIDS 95-95-95 targets for epidemic control by 2025. A total of United States $651 million was mobilized for financing the HIV response, which is 22% lower than the estimated $836 million[14]. A growing number of adolescents living with HIV (ALHIV) are faced with making the transition from pediatric care to adult care. This is a vulnerable point in adolescent healthcare and treatment. The transition comes with empowerment and responsibility of their health[15]. Transition is imperative for optimizing outcomes and building confidence, autonomy, and life skills of these individuals, while reducing their risky behaviors and vulnerability that may affect their adherence to ART and retention in HIV care[16-18].

Through the consolidated guidelines on prevention and treatment of HIV, the Ministry of Health recommends transitioning of adolescents to adulthood care using a standard protocol. The recommendations call for each facility to integrate pediatrics, adolescent, and adult clinics in support of this critical process. Emphasis is placed on the need for a comprehensive transitioning team that includes a clinician, a counselor, a peer supporter, and caregiver to work with each adolescent on a transition plan beginning at the age of 18 years or at first encounter in the clinic if they are older. The transition plan for ALHIV should continuously be updated and transition readiness be assessed at every clinic visit. An appointment with the adult clinic should be scheduled when the adolescent expresses readiness to transition. They also recommend an alternative transitioning method for health facilities that have a separate adolescent clinic by introducing the adult clinic transitioning team to the adolescent prior to transitioning and setting up an appointment with them when the ALHIV confirms readiness[19]. However, there is a lack of data on the successful transition for Ugandan adolescents. Adolescents aged between 10–19 years have unique needs and tend to experience increased risk of HIV infection compared to other groups[20]. Studies indicate that adolescents have negative attitude towards care seeking if they are not adolescent friendly or in spaces that are not adolescent-inclusive[21,22]. The objective of this study was to determine the factors associated with transition into adulthood HIV-centered care among adolescents attending HIV/AIDS clinics in Western Uganda.

MATERIALS AND METHODS

Study design and setting

This was an analytical cross-sectional mixed study of perinatally acquired HIV adolescents enrolled in ART clinics in three sub-regions (Kamwenge, Kibale, and Kitagwenda) in Western Uganda. Data was collected from January 4, 2022 to January 30, 2023. The qualitative method used Focus Group Discussions (FGDs) and key informant interviews (three adolescent care givers, four peer supporters and three adult care givers). The quantitative technique used a structured questionnaire. The public-private sector HIV/AIDS program provides HIV management to adolescents and Baylor Uganda is the main serving implementing partner in the sub-region. Participants were treated by medical practitioners according to national treatment guidelines. The study was pretested prior to the survey.

Outcome and measures

The primary outcome of the study was transition of adolescents, assessed from adolescent ART care to adult ART care. In this study, transition is defined as the process by which individuals respond to change over time, adapting to new situations and integrating these changes into their lives[23]. The exposures identified were client, psychosocial and health system factors. The client factors were: (1) Viral load (VL) variation in the last 2 years (< 1000 copies); (2) ART initiation (< 2 years or > 2 years); (3) Knowledge on transition care and benefits; (4) Willingness to transition to adult HIV care; and (5) Domestic or other responsibilities. Psychosocial factors were stigma and discrimination, peer pressure towards transition, disclosure to peers or partner(s), perceived need for transition. Health system factors were availability of transition team in health facility, availability of transition protocols, transition preparation, facilitating youth to connection to adult care, health worker, perceived attitude, and health worker perceived skills in transition.

Sampling and sample size determination

ALHIV on ART were selected from adolescent ART clinics through a consecutive sampling procedure. The health facilities were selected by purposive sampling. At each facility, a research assistant recruited participants in the ART clinic and enrolled those who fulfilled the inclusion criteria. Those who were ill or not actively receiving HIV care and treatment from the health facility were excluded. Three research assistants who received 3 days of training conducted interviews with the participants in the absence of their parents or guardians. The sample size determination was based on Sloven’s formula, n = N/(1 + Ne²); where n is sample size, N is total population estimate, and e is level of confidence at 5%. Total population was 611 adolescents enrolled on ART. Considering a 10% non-response rate, the sample size was 265.

Statistical analysis

Quantitative analysis was performed in Statistical Package for the Social Sciences (SPSS) software version 20. Descriptive statistics to examine individual-level characteristics and the distribution of predictors of transition was done. Univariate analysis was used to generate data on respondent’s age, sex, duration on ART and transition status. Logistic regression was modeled to identify significant predictors with a P value of 0.05 both in bivariate and multivariate models. Collinearity was assessed using a correlation matrix and cross- checked. In cases where two variables were associated (P < 0.05), the variable explaining the largest variability (smaller P value at univariate analysis) was retained. Significance was set at 0.05, and all analyses were two-tailed. The factor with the highest regression co-efficient was considered to have the highest influence on transition status. Qualitative data were manually analyzed using thematic content analysis to analyze FGDs with a framework analysis. FGDs guideline by Krueger and Casey (2000) was used to examine transcripts, categorize responses and analyze themes that emerged in the data. Then, Guba and Lincoln (1985) guidelines were used to classify themes and the themes generated from the developed categories were reviewed and those that were similar were grouped. Some interviews responses based on verbatim recordings are quoted in italics.

Ethical considerations

The study protocol was approved by the Research Ethics Committee of Faculty of Health Sciences, Uganda Martyrs University, No. 2017–M282-20019. Administrative clearance and permissions were also obtained from the management of each health facility. Beneficiaries of the therapy or their guardians signed informed consent form. Participation was voluntary, and all the interviews were conducted in private settings to ensure the participant’s confidentiality.

RESULTS

Socio-demographic characteristics

A total of 261 adolescents were included in this study. Among the participants, 93 (35.6%) participants of the respondents were in the 13-15 year age group. More than half of the participants, (140; 53.6%) participants were males. Fewer than half of the participants (86; 33.0%) had primary education (P5-P7) and most respondents (186; 71.3%) reported not to have sexual partners (Table 1).

Table 1 Socio-demographic characteristics of participants, n (%).

Variables (n = 261)	Category	Frequency/percent
Sex	Male	140 (53.6)
	Female	121 (46.4)
Age (years)	10-12	67 (25.7)
	13-15	93 (35.6)
	16-18	77 (29.5)
	19-20	24 (9.2)
Religion	Catholic	98 (37.5)
	Protestant	105 (40.2)
	Muslim	38 (14.6)
	Pentecostal/Born-again	20 (7.7)
Highest level of education attained	None	57 (21.8)
	P1-P4	55 (21.1)
	P5-P7	86 (33.0)
	Secondary	57 (21.8)
	Tertiary	6 (2.3)
Ever had a sexual partner	Yes	186 (71.3)
	No	75 (28.7)
Duration of work on a typical working day (hours)	8-10	252 (96.6)
	11-12	9 (3.4)

Personal factors associated with transition into adult HIV care

Almost all 256 (98.1%) of the respondents had tested for VL in the last two years, and 178 (68.2%) respondents had recent VL results of < 1000 cp; 180 (69.0%) respondents had decreased VL compared to their previous results. All respondents were on ART, and 136 (52.1%) had been on ART for over 24 months, while 140 (53.6%) had no treatment holidays. Most of the respondents (217; 83.1%) had heard about transition care from adolescent to adult care. About 103 respondents (66.7%) were willing to transition within 1 year (Table 2).

Table 2 Personal factors associated with transition into adulthood human immunodeficiency virus, n (%).

Variables (n = 261)	Category	Frequency/percent
Had a VL test in the last 2 years	No	5 (1.9)
	Yes	256 (98.1)
Recent VL results (copies)	< 1000	178 (68.2)
	≥ 1000	83 (31.8)
Reduction in current VL compared to previous VL results	No	81 (31.0)
	Yes	180 (69.0)
Time initiated on ART (months ago)	< 6	9 (3.4)
	6-12	58 (22.2)
	13-24	58 (22.2)
	Over 24	136 (52.1)
Ever had any treatment holiday	No	140 (53.6)
	Yes	121 (46.4)
Heard about transition care	No	44 (16.9)
	Yes	217 (83.1)
Source of information on transition	Fellow clients	44 (16.9)
	Adolescent clients	30 (11.5)
	Community	12 (4.6)
	Health worker	112 (42.9)
	Treatment supporter	63 (24.1)
Willingness to transition from adolescent ART care to adult care	No	87 (33.3)
	Yes	174 (66.7)
Time required to transition to adult care	Immediately	12 (4.6)
	≤ 1 week	2 (0.8)
	within 1 month	27 (10.3)
	within 6 months	47 (18)
	within 1 year	173 (66.3)
Components of TC	Transitioning team at adolescent clinic	48 (18.4)
	Transitioning plan once adult 18 years	189 (72.4)
	Adolescent’s readiness assessment > 2 years	10 (3.8)
	Appointment counselling sessions on TC	14 (5.4)
Benefits of transitioning to adult care	Retention in HIV care	13 (5.0)
	Continued ART adherence	75 (29.0)
	Successful viral suppression	126 (48.0)
	Partner HIV disclosure	371 (4.2)
	HIV care self-management	10 (3.8)
Stay with parent or relatives	No	53 (20.3)
	Yes	208 (79.7)
Person staying with if not parents or relative	Partner	15 (5.7)
	Friend	73 (28.0)
	Fellow client	1 (0.4)
	Well-wisher/organization	172 (65.9)
Have siblings	No	89 (34.1)
	Yes	172 (65.9)

ART: Antiretroviral therapy; HIV: Human immunodeficiency virus; TC: Transitioning care; VL: Viral load.

Psychosocial factors associated with transition into adulthood HIV care

More than half 144 of respondents (55.2%) had felt disgraced because of their HIV status, while 117 (44.8%) respondents did not. Of those who encountered disgrace, 145 (55.6%) respondents experienced it from school. Most of the respondents (152; 58.2%) had not been discriminated against because of their HIV status; 153 (53.6%) of the respondents’ decision on transition were not affected by their peers, and 161 (61.7%) respondents were encouraged to transition by their peers. Most (211; 80.8%) of the respondents had disclosed their status to someone, and more than half of the respondents (146; 55.9%) felt the need to transition from adolescent clinic to adult clinic (Table 3).

Table 3 Psychosocial factors associated with transition into adulthood human immunodeficiency virus care, n (%).

Variable (n = 261)	Category	Frequency/percent
Ever felt disgraced because of your HIV status	No	117 (44.8)
	Yes	144 (55.2)
Ever encountered disgrace to you because of your HIV status	No	154 (59.0)
	Yes	107 (41.0)
Place you face this disgrace/humiliation	Home	13 (5.0)
	Work	5 (1.9)
	School	145 (55.6)
	Among relatives	70 (26.8)
	Community activity	28 (10.7)
Ever been discriminated/denied anything because of your HIV status	No	152 (58.2)
	Yes	109 (41.8)
Place of discrimination against	Home	39 (15.0)
	Work	13 (5.0)
	School	89 (34.1)
	Among relatives	89 (34.1)
	Community activity	16 (6.1)
	Others	15 (5.7)
People you socialize with as peers	Fellow clients	37 (14.2)
	School mates	134 (51.3)
	Workmates	38 (14.6)
	Social clubs	52 (19.9)
Peers affect your decision in transitioning from adolescent to adult antiretroviral therapy care	No	153 (58.6)
	Yes	108 (41.4)
How they affect your decision in transitioning from adolescent to adult care	Encourage it	161 (61.7)
	Discourage it	63 (24.1)
	May prevent it	37 (14.2)
Disclosed your HIV status to anyone	No	50 (19.2)
	Yes	211 (80.8)
Person to whom you disclosed your HIV status	Relatives	85 (32.6)
	Peers	112 (42.9)
	Workmates	15 (5.70)
	Sexual partner(s)	49 (18.8)
Reasons for not disclosing your status	Fear of rejection	109 (41.7)
	Fear of ill treatment	28 (10.7)
	Not necessary	52 (20.0)
	Fear of loss of respect	26 (10.0)
	Fear of loss of social status	46 (17.6)
Difficulty in disclosing status to peer	Very difficult	39 (15.0)
	Difficult	61 (23.4)
	Not difficult	102 (39.0)
	Easy	59 (22.6)
Difficulty in disclosing status to partner	Very difficult	48 (18.4)
	Difficult	92 (35.2)
	Not difficult	78 (29.9)
	Easy	43 (16.5)
Think you need to transition from Adolescent clinic to adult clinic	No	115 (44.1)
	Yes	146 (55.9)
Reasons for needing to transition to the adult clinic	I’m of age	170 (65.1)
	Health workers say I should	39 (14.9)
	Peers say I should	11 (4.0)
	I don’t fit in adolescent clinic	41 (16.0)

HIV: Human immunodeficiency virus.

Health system factors associated with transition into adulthood HIV care

Most (232; 88.9%) of the respondents said the hospital had a transition team, 192 (73.6%) said they were prepared for transition, and 127 (48.6%) were prepared to transition in less than 6 months. Fewer than half of the participants (111; 42.5%) of the respondents were facilitated by referral notes (Table 4).

Table 4 Health system factors associated with transition into adulthood human immunodeficiency virus care, n (%).

Variable (n = 261)	Category	Frequency/percent
Have a transition team at health facility	No	29 (11.1)
	Yes	232 (88.9)
Adolescent prepared for transition to adult care	No	69 (26.4)
	Yes	192 (73.6)
Ways prepared for transition to adult care	ART adherence counseling	60 (33.0)
	Readiness assessment	60 (33.0)
	Timely exposure to adult caregivers	89 (34.0)
	Early transitioning education	52 (20.0)
Duration since transitioning as an adolescent to adult care (months ago)	< 6	127 (48.6)
	6-12	62 (23.8)
	13-24	40 (15.3)
	Over 24	32 (12.3)
Ways you as a youth facilitated connection to adult clinic	Physical escorting	64 (24.5)
	Referral note	111 (42.5)
	Through peer clients	62 (23.8)
	Others/specify	24 (9.2)
Thoughts of adult ART service providers	Friendly	154 (59.0)
	Receptive	68 (26.1)
	Patient	16 (6.1)
	Unfriendly	12 (4.6)
	Tough	6 (2.3)
	Impatient	5 (1.9)
Thoughts of pediatric ART service providers	Friendly	201 (77.0)
	Receptive	33 (13.0)
	Patient	13 (5.0)
	Unfriendly	4 (1.5)
	Tough	6 (2)
	Impatient	4 (1.5)
Pediatric caregivers skillful	No	49 (18.8)
	Yes	212 (81.2)
Adult caregivers are skillful	No	60 (23.0)
	Yes	201 (77.0)

ART: Antiretroviral therapy.

Proportion of transition from adolescent care to adult care

Of the 261 respondents, 106 (40.6%) had transitioned to adult care from adolescent care while 155 (59.4%) were still in adolescent care.

Factors associated with transition into adult HIV care

Bivariate analysis of personal factors showed that VL levels of < 1000 [crude prevalence ratio (PR) = 1.437, 95%CI: 1.078-2.645], unavailability of transition team (crude PR = 1.902, 95%CI: 1.627-2.193), non-continued ART adherence (crude PR = 1.218, 95%CI: 1.088-1.256), unsuccessful viral suppression (crude PR = 1.645, 95%CI: 1.355-1.714), and no willingness to transition (crude PR = 1.740, 95%CI: 1.349-3.685) were all associated with non-transitioning to adult care. Regarding the psychosocial factors, having never felt disgrace (crude PR = 0.688, 95%CI: 0.360-0.900), having never been discriminated (crude PR = 0.575, 95%CI: 0.821-0.821), disclosure to relatives (crude PR = 2.786, 95%CI: 1.356-3.734), disclosure to peers (crude PR = 2.481, 95%CI: 2.090-2.574) and thought that there is no need for transition (crude PR = 1.582, 95%CI: 1.349-1.970) were significantly associated with non-transitioning to adult care. Bivariate analysis identified the following institutional factors to be associated with not transitioning: Not having a transition team at the health facility (crude PR = 1.522, 95%CI: 1.066-4.115), not been prepared for the transition (crude PR = 6.361, 95%CI: 2.221-8.320), having friendly pediatric service providers (crude PR = 0.592, 95%CI: 0.165-0.725) and not having skilled pediatric caregiver providing transition care (crude PR = 2.611, 95%CI: 1.146- 2.859) were all associated with not transitioning to adult care.

Multivariate logistic regression modeling revealed that adolescents who did not disclose their HIV status to relatives, age groups 10-12 years and 13-15 years, and adolescents with negative perceptions of their caregivers' skillfulness in providing care, no successful viral suppression, recent VL results of < 1000 cp and those not prepared for transitioning were significant predictors of transition to adult care.

Notably, adolescents who had not disclosed their HIV status to relatives were 5.0 times more likely to fail to transition to adult care compared to those who had disclosed their status. Adolescents aged 10-12 years and 13-15 years were 2.5 times and 1.9 times more likely, respectively, not to transition to adult care compared to those aged 19-20 years. Conversely, adolescents who perceived their pediatric caregivers as unskilled in providing transitioning care (TC) were less likely to transition to adult care compared to those who perceived their caregivers as skilled. Finally, adolescents who did not receive preparation for transitioning during adolescence were significantly more likely (5.4 times) not to transition to adult care than those who received preparation (Table 5).

Table 5 Unadjusted and adjusted factors associated with transition into adulthood human immunodeficiency virus care.

Variable	Category	Crude PR (95%CI)	P value	Adjusted PR (95%CI)	P value
Age (years)	10-12	1.553 (1.220-1.592)	0.009	2.525 (2.121-2.944)	0.002
	13-15	1.419 (1.304-1.780)	0.049	1.900 (1.196-3.416)	0.001
	16-18	1.324 (.611-1.339)	0.240	0.991 (0.536-1.242)	0.184
	19-20	1		1
Successful viral suppression	No	1.645 (1.355-1.714)	0.012	1.534 (1.173-1.648)	0.016
	Yes	1		1
Recent viral load results (copies)	< 1000	1.437 (1.078-2.645)	0.002	3.285 (2.155-4.267)	0.007
	≥ 1000	1		1
Disclosure to relatives	No	2.786 (1.356-3.734)	0.001	5.001 (3.411-3.411)	0.001
	Yes	1		1.0
Prepared for transition	No	6.361 (2.221-8.320)	0.030	5.417 (3.468-7.135)	0.041
	Yes	1		1
Thought caregivers are skillful in providing care	No	2.611 (1.146-2.859)	0.001	3.724 (2.084-4.105)	0.005
	Yes	1		1

PR: Prevalence ratio.

In this study, qualitative data findings were generated as themes and subthemes. The themes and subthemes generated were 6 and 13 subthemes of the factors (personal, psychosocial and health system) that determine the transition of adolescents to adult care (Table 6).

Table 6 Themes and subthemes of factors in the transition to adult care.

	Themes	Subthemes
Personal factors	Time of initiation of ART	ART adherence
		Understanding purpose of life medication
	Preparation for transition	Lack of positive attitude towards adult HIV care services
		Awareness of the HIV disease
Psychosocial factors	Knowledge of HIV disease management	Lack of adolescent care management expertise
		Weak behavioral change communication interventions
	HIV stigmatization and discrimination	Vulnerability to psychological distress
		Lack of friendly adolescent care
		Lack of community engagement and social support structures
Health system factors	Availability of transition teams	Inadequate staff in HIV adolescent care
		Encourage a multidisciplinary team
		Identify challenges that affect process of transition
	Availability of transition plan	Limited funding to foster the transition process
		Develop personalized plans

ART: Antiretroviral therapy; HIV: Human immunodeficiency virus.

Personal factors

Time of initiation of ART: Some participants in the FGDs highlighted the importance of the timing of ART initiation in the transition process, as emphasized by all the health workers. They noted that it is crucial to inform children about the purpose of lifelong medication as early as they are capable of understanding, since processing this information takes time and is foundational to a smooth transition. One respondent said: The fact that most adolescents who are HIV positive contracted the infection at an early age when they are unaware, when the time come for them to take responsibility as they approach adulthood, the ART might be a serious issue as they tend to live in denial of the purpose of why they have been taking drug (FGD1, R4). The interviewed health workers observed that adolescent should be enrolled in the transition process as early as possible because this will give them time to adjust their thoughts and attitude towards adult HIV care. success of TC highly relies on early preparation and preparing them for the challenges they may face under HIV disease self-management. This means that if adolescents are well prepared for transition, then the adolescents would be willing to participate in the process at the right time.

Another respondent expressed that: This always happened when these children are not informed early enough, and they learn from friends of their condition (FGD 2, R7). A key informant asserted that: It is never too early to begin preparing for care transitions. As most transitions in HIV care occur between ages 21–24 years, it is important to develop a transition plan several years prior, and to update it regularly (KI, 05).

Psychosocial factors

Knowledge of HIV care management: Most key informants believed that successful transitions occur when patients have understood and accepted their illness and are oriented toward future goals, including long-term survival. One respondent said: The transition plan should be implemented when adolescents demonstrate understanding of the disease and its management, demonstrates ability to make and keep appointments, knows when and how to seek medical care for symptoms or emergencies, and is clinically and psychosocially stable (KI, 01).

HIV stigmatization and discrimination: Behavior change, communication and other interventions should address HIV stigmatization and discrimination in the community and social avenues where HIV-positive adolescents and young adults live, as this would improve both their transition and ART self-management under adult care. This was emphasized by another respondent: The peers play a great role in the transition process, and this is because adolescents move with the majority and the idea of their friends. Once they feel comfortable with friends, they believe in them even more than us the health workers…. (FGDI,04). Another participant asserted that: …… the reason why it is necessary to include peers in their transition teams to re-echo the message passed to them during sessions of transition; we have many young adults who we transition to adult care, and they return to adolescent clinic because they don’t identify with anyone in the former (FGD, 06).

Health system factors

Availability of transition teams: During the interview, health workers were asked about systemic issues that influence transition. Overall, they agreed that the health system should have transition teams, transition plans and processes. However, they suggest more practical aspects to aid in the implementation of the transition process due to limited funding and staff. The facility has a transition team which has both the pediatric and adult care givers, social worker/counselling, peer and treatment buddy and sometimes the treatment supporter. This allows us to comprehensively handle any challenge that come in the process of transition (KI, 04).

DISCUSSION

Adolescents remain the largest population group with the poorest outcomes in HIV care in most sub-Saharan countries, including Uganda. Therefore, this study aimed to determine the factors associated with transition into adulthood HIV-centered care among adolescents attending HIV/AIDS clinics in Western Uganda. While transition may be influenced by factors such as age and psychosocial factors, among others, the transition to adult care is multifaceted and impacts access to medical care. This study found that four out of every ten (40.6%) of adolescents were transitioning from adolescent HIV care to adulthood HIV care. This is in contrast to findings from eight health facilities in two regions of Ethiopia, of which 8.7% transitioned to adult care. In South Africa, transition rates stand at 36% to 39.8%[24,25]. Therefore, guidelines should be available to healthcare workers to ensure that transition takes place promptly.

A UNICEF report indicated that 26% of girls and 32% of boys 15–19 years in sub-Saharan Africa transitioned to adult care. These data imply that more early efforts are needed to prepare adolescents for the change[26,27]. These may include a multidisciplinary team, including pediatric and adult HIV specialists, social workers, psychologists, and other healthcare professionals, who should be involved in the transition process. Ongoing psychosocial support is essential to address the emotional and social challenges faced by adolescents with HIV. This may include individual counseling, group therapy, and peer support programs. Ongoing follow-up and support are essential after the transition to ensure that adolescents are adapting well to adult care.

Findings indicate that transition was low among adolescents below 15 years of age compared to those who are at least 19 years, likely because of developmental changes. Adolescence is a period of significant physical, emotional, and social development. Healthcare requires changes during this time, and adolescents require specialized support to navigate these changes. Adolescence and adulthood are defined by age; hence, age is a prerequisite for transition, and adolescents aged 16 years can be motivated to take parts in the transition process without much struggle. This is consistent with a study by Reiss et al[28], who observed that transition occurred across a certain age range; however, its success relied more on previous preparation than on a particular age. Similarly, Katusiime et al[29] stated that the age of 25 was recommended for transitioning to the adult clinic. This implies that the focus of the facilities was for a successful transition process irrespective of age. Therefore, transitioning adolescents from pediatric to adult care requires careful planning and coordination. Ensuring continuity of care and addressing the unique needs of this age group is crucial. The transition from pediatric to adult HIV care is a complex process that requires careful planning and coordination.

In this study, we found that adolescents transitioning from adolescent HIV care to adult HIV care were positively influenced by having suppressed VLs and having a current VL reading of < 1000 cp. This may be because VL is a measure of adherence and positive outcome in HIV treatment that guides the health facility’s choice of who to transition. This is consistent with Fair et al[30], who noted that VL variation in the last 2 years could influence the transition from adolescent care to adult ART care in health facilities. Health service providers did not consider VL in initiating the transition process, but instead used it as a measure of a successfully managed transition if the PLWHIV on testing had an undetectable VL[31]. In addition, Evans et al[31] revealed that HIV-infected adolescents in resource-poor settings have poorer adherence rates and poorer virological outcomes than their adult counterparts, which may negatively impact the transition process[32]. This implies that proper VL monitoring among adolescents is a critical aspect of measuring adherence, and hence, treatment outcome in ART. Children may require different formulations of ART medications compared to adults. Adherence to ART can be particularly challenging in children, requiring careful monitoring and support. Pediatric follow-up through more frequent monitoring of VL, CD4 counts, growth and development is essential. Regular assessments for opportunistic infections and developmental delays are crucial. Psychosocial support for the child and family is vital. Adult follow-up by regular monitoring of VL and CD4 counts is needed. Screening for comorbidities, such as cardiovascular disease and other age-related conditions, is important. Counseling regarding safe sexual practices and drug use is important. Psychosocial support remains important. Adherence to ART can be particularly challenging during adolescence due to factors such as rebellion, risk-taking behaviors, and difficulty accepting a chronic illness. A structured transition can help maintain adherence and prevent treatment interruptions.

In this study, adolescents who had not disclosed their status to relatives were 5 times more likely not to transition to adult care compared to their counterparts who had disclosed their status to relatives. This may be because it takes extra confidence and high acceptance for one to disclose their HIV status to others, as HIV status can be faced with rejection. This is consistent with findings that ALHIV are also afraid of rejection and loss of respect, creating a hindrance to status disclosure[33]. This trend was similar in other studies that indicated that transition for adolescents is indeed more difficult than anticipated. Similarly, Dowshen and D’Angelo[34] suggested that ALHIV, PLWHIV and their pediatric caregivers are often apprehensive of transitioning to adult care due to the fear of stigma and discrimination from adult caregivers and adult patients. Young people living with HIV are also afraid to attend adult clinics for the fear of unwanted attention and unintended status disclosure by virtue of their attendance of these well-known “infectious diseases clinics”. This implies that disclosure should be encouraged to allow proper transition processes[34]. Adolescents with HIV face unique psychosocial challenges, including disclosure, stigma, body image issues, and sexual identity development. A smooth transition ensures that they continue to receive appropriate mental health and social support.

In this study, we found that adolescents who were unprepared for the transition process were 5 times more likely not to transition compared to adolescents who were prepared for the transition process. This implies that preparation is key to the transition process, likely because awareness of the guidelines and their importance contributes to a successful transition. This is consistent with findings in other studies[35,36]. In addition, the findings revealed that respondents were dissatisfied with how inadequately they were prepared for the “tough” and impersonal nature of care in the adult clinic which they found alienating compared to the warm and supportive environment of their previous adolescent and pediatric clinics. This is consistent with a similar study that found that adult care centers do not meet the needs of adolescents in the transition process[37-39]. Adolescents could develop the skills needed to manage their medications, schedule appointments, and advocate for their healthcare needs. A smooth transfer of medical records is crucial to ensure continuity of care. This includes information about the adolescent's medical history, treatment regimen, and any relevant lab results. Adolescents should have the opportunity to meet their adult care providers before the transition. This helps to build trust and rapport to ease the transition process.

Similarly, Machado et al[40] suggested that preparation for transition begin in their early and mid-teen years instead of waiting for them to come of age to begin the process. This suggests that at the study site, the provision of adequate medical history for transitioning ALHIV was lacking due to a breakdown in communication between pediatric and adult clinics. This disruption hindered continuity of care, as adult caregivers were often uninformed, and ALHIV, uncomfortable and emotionally burdened, struggled to retell their traumatic medical histories during the transition process. Successful transitioning is essential for optimizing health outcomes. For transitions to be effective and guided by protocols, caregivers must routinely identify barriers at the patient, caregiver and health system levels, and integrate these barriers and the strategies used to overcome them into transition protocols. Therefore, protocols become the means of addressing health service provider knowledge barriers and providing guidance to healthcare teams on the best strategies for ensuring adherence among ALHIV to the transition process[41]. However, various studies have described different protocols to achieve positive outcomes. The difference could be because of differences in study design. This implies that guidelines are essential for the effective implementation of any activity, and the transition process is no exception. A well-planned transition ensures seamless continuity of care, preventing gaps in treatment and monitoring. This is essential for maintaining viral suppression and preventing complications. The transition process should empower adolescents to take ownership of their health and develop the necessary skills to manage HIV as adults. Early transition planning should begin several years before the adolescent reaches adulthood, allowing time for gradual preparation and education.

However, this study did not identify an association between availability of a transition protocol and transition from adolescent ART care to adult ART care. This is inconsistent with Ledford’s study[42], which showed that lack of a standard global guideline or protocol for transitioning was a key barrier but noted that different health facilities had developed and tailored protocols to guide this dynamic process. Given the existing challenges in the transition process, there is a need to improve approaches to adolescent care through adoption of special trainings in adolescent care and medicine and infrastructure to serve their needs. Adolescents should receive comprehensive education about HIV, ART, safe sex practices, and other relevant health topics.

While this study provides valuable insight into the transition process, there are several limitations. First, the study was limited with the inability to make causal conclusions. The cross-sectional nature of the data cannot generalize the findings. Second, study participants were recruited from specialty HIV clinics. Their experiences may be less generalizable to adolescents with HIV in other country settings who do not have access to specialty pediatric, adolescent or antenatal care.

CONCLUSION

This paper shows that the percentage of adolescents who underwent the transition process was low. It shows that despite progress in the HIV care cascade, transitioning ALHIV to adult-centered care remains a challenge. Our findings could inform policymakers and practitioners on transition rates in HIV-infected adolescents from pediatric to adult care in Uganda and other similar settings. It is commendable that policymakers and practitioners embrace the need to address gaps in policy and medical care that could reverse the progress made in HIV control. The following key issues have been identified in relation to transition: Pediatric and adult follow-up care, the transition process during adolescence, developmental changes, adherence challenges, psychosocial needs, and the importance of fostering empowerment and independence. Key components of a successful transition may include early planning, involvement of a multidisciplinary team, education and skill building, psychosocial support, transfer of medical records, introduction to adult care providers, and ongoing follow-up and support. By implementing these strategies, healthcare professionals can help adolescents with HIV successfully transition to adult care and achieve optimal health outcomes. Future research should explore which components of transition produce the best outcomes for adolescents with HIV and their families so that a unified approach can be developed and implemented.