Disclosure Rate and the Associated Factors Among Adolescents Living with the Human Immunodeficiency Virus in Gombe Metropolis, Nigeria

Background: Disclosure of Human Immunodeficiency Virus (HIV) status is one of the major challenges in the management of children and adolescents living with HIV (CALHIV). Disclosure has been shown to positively impact adherence to antiretroviral therapy and retention in the care of CALHIV. With the increasing number of adolescents living with HIV (ALHIV) and the peculiarities of adolescence, there is a need for local data on the disclosure of HIV status among ALHIV. Objectives: To determine the disclosure rate in HIV infection and the associated factors among ALHIV in Gombe Metropolis. Methods: This cross-sectional study was conducted over ten months among 130 ALHIVs aged 12-18 who attended Antiretroviral Therapy Clinics at the Federal Teaching Hospital and the State Specialist Hospital in Gombe, Nigeria. Disclosure of HIV status was assessed using a pre-tested semi-structured questionnaire administered to adolescents and their respective caregivers. Results: The HIV status disclosure rate by caregivers' report and self-report was 66.2% and 63.1%, respectively. Older adolescents' age and higher level of education were significantly associated with disclosure (p < 0.05). The commonest reason for disclosure was 'increasing curiosity' (23/130; 26.7%), while 'being too young' was the commonest reason for non-disclosure (19/44; 43.2%). Conclusion: The disclosure rate among ALHIV in Gombe Metropolis was relatively high. Caregivers should be encouraged to disclose early.


Introduction
Human Immunodeficiency Virus (HIV) infection is a significant cause of morbidity and mortality among adolescents, especially in sub-Saharan Africa. 1,2About 1.7 million adolescents (aged 10-19 years) live with HIV/AIDS globally. 3In Nigeria, over 120,000 adolescents live with the virus. 4The increase in survival of children with perinatally acquired HIV has significantly contributed to the high proportion of adolescents living with HIV (ALHIV). 5][8] Disclosure is the process of providing information or ongoing discussion on HIV status to an infected child. 9Full disclosure entails stating the name of the disease as 'HIV/AIDS'. 100][11] Despite the increasing numbers of ALHIV, there appears to be a paucity of studies on HIV disclosure exclusively among adolescents. 123][14][15] Therefore, the study was conceived to provide local data for evidencebased recommendations on status disclosure among ALHIV in a typical sub-Saharan setting.This is essential in view of the psycho-social peculiarities of adolescence. 16herefore, the study aimed to assess the prevalence of full status disclosure and the factors associated with HIV status disclosure among ALHIV in the Gombe Metropolis.

Study design
The descriptive, cross-sectional study was conducted between July 2020 and May 2021.

Study area
The study was conducted at the Antiretroviral Therapy (ART) Clinics of the Federal Teaching Hospital (FTH), Gombe and the State Specialist Hospital (SSH), Gombe in Gombe Metropolis, North-East Nigeria.The two facilities were the only public facilities providing paediatric ART care in the metropolis.Each of the two clinics has a side laboratory, a counselling unit, a nursing bay, consulting rooms and the ART pharmacy.The number of registered paediatric and adolescent patients in FTH and SSH (as at the time of the study) were 660 and 922, respectively.There were 112 and 96 adolescents (aged 10-19) who were actively attending the follow-up care available in the two clinics at the time of the study.

Study population, sample size and sampling technique
The respondents were ALHIV on follow-up care in the two facilities.A documented disclosure rate of 29.6% in Abuja-Nigeria was used to calculate the sample size. 15The sample size was calculated and adjusted to 131 using the Cochrane formula n = z 2 pq/d 2 and S = n÷[1+(n-1)÷N], respectively. 17The adjustment was necessary because the number of the study population was less than the initially calculated minimal sample size. 17The number of respondents recruited per facility was estimated by simple proportion.Seventy-one respondents were recruited from the FTH Gombe, and 60 respondents were recruited from the SSH Gombe.A purposive sampling method was used to recruit the respondents from each facility.Adolescents who were <12 years old, those whose parents refused consent, and those who were >18 years old were excluded.According to the WHO guidelines, full disclosure should be achieved by the 12 th year, thus the exclusion of those <12 years.

Ethical consideration
Ethical clearance was obtained from the Ethics and Research Committee of the Federal Teaching Hospital, Gombe, and permission was obtained from the Gombe State Ministry of Health (Certificate Number: HREC25/10/2013).Written informed consent was obtained from every caregiver of the study participants.Assent was also obtained from all the adolescents who were yet to turn 18.Confidentiality was also ensured.

Study tool and data collection
A pre-tested, semi-structured questionnaire adapted from the work of Turissini et al . 18 on disclosure of HIV status was used to obtain data from both the parents and the adolescents.The biodata, socioeconomic status (using the Oyedeji classification system), information on disclosure of HIV status, parental perception on disclosure, and reasons for disclosure and non-disclosure were obtained.Relevant clinical details available in the clinical records of the study participants, like WHO clinical stage, viral load, and adherence, were also retrieved.

Data management
The questionnaires were numbered serially and cross-checked for completeness.One returned questionnaire was excluded from the final analysis because it contained incomplete data.Data were extracted and entered into SPSS version 24 for analysis.Categorical variables were expressed in frequency and percentages, while the mean was calculated for quantitative variables that were normally distributed.The Chi-Square test was used to assess the level of association between categorical variables with a significant level of association set at p-value <0.05.

Results
Out of the 130 adolescent participants with complete data, 73 (56.2%) were males with a male-to-female ratio of 1.4:1.The mean age of the adolescents was 14.9±1.7 years.Twenty-six (20.0%) were late adolescents, while the rest were almost equally distributed as either early or mid-adolescents.Ninety-seven (74.1%) belonged to the low socioeconomic class (SEC), while 67 (51.5%) were either single or double orphans.The sociodemographic characteristics of respondents are shown in Table 1.
The HIV-related clinical characteristics of the adolescents are presented in Table II.Mother-tochild transmission of HIV accounted for 123 (94.6%), and 95 (73.1%) were diagnosed with HIV between the ages of 1 and 9 years, while 23 (17.7%) were diagnosed in adolescence.
Those with advanced disease -World Health Organization (WHO) Stages III and IVrepresented 23.8% of the cohort.Adherence to Antiretroviral Therapy (ART) was good in the majority (84.6%), and 98 (75.4%) of the adolescents were virologically suppressed with viral loads of ≤ 1000 copies/ml.

HIV status disclosure rate
The rate of HIV status disclosure based on the caregivers' report was 66.2% (86/130), while the rate based on the adolescent respondents (selfreport) was 63.1% (82/130).This is illustrated in Figure 1 below.

Responses of caregivers on the disclosure process
The responses of caregivers on the disclosure process are shown in Table III.Of the everyday caregivers' reasons for disclosure, 'increasing curiosity' by the adolescents was the commonest reason that led to disclosure of HIV status in 23 (26.7%), followed by 'worsening illness' in 14 (16.3%).Mothers were responsible for the disclosure process in about half (48.8%) of the cases, while health workers did the disclosure process in 15 (17.4%).Nearly half (45.3%) of the subjects had no reported change in attitude after knowing their HIV status, 28 (32.6%) were reported to be scared, and 15 (17.4%) were reported to have been angry.The minimum age of subjects at disclosure was eight years, while the mean age at disclosure was 13.2 ±1.7 years.Most (89.5%) of the respondents had disclosure after their 12 th birthday.

Caregivers' reasons for non-disclosure of HIV diagnosis
The commonest reason given by the caregivers for not disclosing to the subjects their HIV status was 'being too young' in 19 (43.2%), followed by 'not knowing how to go about it' in 13 (29.5%).The reasons are represented in Figure 2. Adolescents' perception of disclosure and selfdisclosure of HIV status The majority (90.2%) of the 82 subjects who knew their HIV status liked the fact that they were disclosed.Only 9 (11%) of them reportedly disclosed their HIV status to a third party, most of whom (55.6%) were their family members.
Table IV shows the perception of the adolescents on knowing their HIV status and pattern of selfdisclosure to a third party.

Factors Associated with HIV Diagnosis Disclosure
The disclosure rate was significantly higher in late and mid-adolescents than in early adolescents (p<0.001).Similarly, the disclosure rate was significantly higher among ALHIVs who were enrolled in secondary or tertiary educational institutions than those in primary schools or those who were not (p = 0.037).Adolescents who were ever hospitalised had a higher disclosure rate compared to those with no history of hospitalisation, even though the difference was not significant (X 2 = 5.227, p = 0.073).Similarly, ART adherence, viral suppression and WHO disease stage were not significantly associated with disclosure (shown in Tables Va and Vb).

Discussion
The HIV status disclosure rate of 66.2% provided by the caregivers in this study is higher than the This study revealed that increasing adolescent curiosity was the commonest reason for caregivers to disclose information.Adolescents are known for their curiosity as they explore the boundaries of independence from their parents or caregivers. 16This suggests that the risk of accidental/unplanned disclosure of diagnosis to these adolescents is increased as their curiosity increases, hence the need for continuous advocacy on early disclosure.This finding is similar to that of Brown et al 20 who also reported 'frequent questioning on what illness they are suffering from' as the commonest reason for disclosure.Adolescents have been shown to manifest various reactions and attitudes following disclosure of their HIV status.In the present study, 45.3% of the adolescents reported no noticeable change in their actions following disclosure.The finding is, however, contrary to that of Okawa et al . 25 in Zambia, who reported that only 9% of the population had no noticeable reaction following disclosure and that of Ekop et al. 13, who studied a similar population with the same study design and also reported a high parental concern on the reactions of their children following disclosure process. 26hile those studies documented 'parental reports', our study reported the 'adolescents' selfreport, which may be more reliable in assessing adolescents' reactions.Among the many reasons proffered for non-disclosure by the caregivers, 'being too young' (43.2%) was the commonest reason in the present study, followed by 'not knowing how to go about it'.This is similar to the observations made by Orji et al . 27 in Abakaliki, Southern Nigeria and Gyamfi et al . 8 in Ghana, even though their study subjects included preadolescents.On the other hand, Ekop and colleague ,13 whose study population were adolescents reported 'fear of subsequent disclosure by the adolescents to a third party' as the commonest reason for non-disclosure.With the restriction of the study participants to 12 years of age or higher (as in the AAP recommendation) 11 , this study revealed the need for continuous engagement with caregivers in encouraging early disclosure.It also shows the need for developing culturally acceptable ways of initiating HIV status disclosure in the study's locality.
This study also revealed that older adolescents and the increasing level of education of the adolescents were significantly associated with HIV status disclosure.21]28 As adolescents grow toward adulthood, disclosure becomes eminent, possibly due to the increasing knowledge and curiosity that comes with age. 16Similarly, the report of Ikpeme and colleague 16 in Uyo, southern Nigeria, supports the significant association between disclosure and the level of education of the adolescents in this study.This may suggest a positive impact of health education on the disclosure of HIV status to ALHIV who attend schools.Other factors like HIV-related clinical characteristics were not significantly associated with disclosure in this study, in contrast to the reports of Okechukwu et al . 15 and Arrive et al . 28 .

Conclusion
The HIV status disclosure rate was relatively high and significantly associated with older age and a high level of education among the adolescents studied.Increasing curiosity among adolescents was the most common reason for disclosure.It is recommended that caregivers of ALHIV should be engaged and encouraged by clinicians on early disclosure of HIV status.

Figure 1 :
Figure 1: Disclosure rate based on self-report and caregivers' report

Figure 2 :
Figure 2: Caregivers' reasons for not disclosing the HIV diagnosis to ALHIV **Others: No reason; Waiting for the father to do the disclosure; Not important

Table I : Sociodemographic characteristics of the participants
24

Table III : Responses of caregivers on the disclosure process
*Change in caregivers; Accidental disclosure; Healthcare providers' counsel **Neighbour; ***Withdrawn, can't describe.

Disclosure Rate and the Associated Factors Among Adolescents Living with the Human Immunodeficiency Virus in Gombe Metropolis, Nigeria ©Niger
J Paediatr.Volume 51, Issue No. 2, 2024_____________________________________________133