|Year : 2020 | Volume
| Issue : 1 | Page : 60-66
Disclosure of status among Human Immunodeficiency Virus-infected adolescents
Eno Eloho Ekop, Adaora Adeline Okechukwu
Department of Paediatrics, University of Abuja Teaching Hospital, Abuja, Nigeria
|Date of Submission||08-Dec-2018|
|Date of Decision||05-Feb-2019|
|Date of Acceptance||07-May-2019|
|Date of Web Publication||18-Mar-2020|
Dr. Eno Eloho Ekop
Department of Paediatrics, University of Abuja Teaching Hospital, Abuja
Background: Disclosing a positive Human Immunode ciency Virus (HIV)-infection status to a child pose major challenges to caregivers for various reasons. Objective: This study aims to determine the prevalence, pattern and effect of disclosure among HIV-infected adolescents attending a tertiary hospital in Nigeria. Materials and Methods: A cross-sectional study among adolescents attending the HIV Paediatric clinic at the University of Abuja Teaching Hospital, Gwagwalada. A questionnaire was administered after ethically age-appropriate consent and assent had been obtained from the adolescents or adolescent/caregiver pairs. Blood was also drawn for CD4 count and viral load assay. Results: One hundred and forty-five adolescents participated in the study. Eighty (55.2%) were males, 78(53.8%) aged 10-13 years while 91(62.7%) had secondary level of education. Fifty-nine (40.7%) adolescents had been disclosed to. The mean age of disclosure was 14.6±2.2. Disclosure was mostly by mothers (n = 32; 22.1%), at home (n = 43; 29.7%) and their status revealed by 14 (23.7%) of the adolescents to mainly their siblings (n = 10; 6.9%). At disclosure, 19 (13.1%) felt bad/sad while 18 (12.4%) were indifferent. The preferred age for disclosure was 14–16 years (n = 33; 22.8%). There was a statistically significant relationship between disclosure and; adolescents' age (P = <0.001), mean age of disclosure (P = <0.001); social class (P = 0.046); caregivers' educational level (P = < 0.01) and CD4 count (P = 0.003) but none for gender (P = 0.59), type of ARV medication (P = 0.519), self-reported adherence (P = 0.476) and viral load (P = 0.729). Conclusion: Disclosure prevalence was low. Caregivers should be better counseled and encouraged on the importance of early disclosure.
Keywords: Adolescents, caregivers, disclosure, human immunodeficiency virus
|How to cite this article:|
Ekop EE, Okechukwu AA. Disclosure of status among Human Immunodeficiency Virus-infected adolescents. Sahel Med J 2020;23:60-6
| Introduction|| |
When, how and where to disclose a positive Human Immunodeficiency Virus (HIV) infection status to a child pose major challenges to caregivers for various reasons such as fear of HIV-related stigma, fear of further disclosure to others, psychological harm, affectation of the functioning of the family and worry about the coping skills among others. Delaying the process only worsens the difficulty experienced when disclosure is finally done. As adolescents become sexually active, nondisclosure puts the infected ones and their partners at greater risk. Adherence to antiretroviral drugs may suffer and lead to drug resistance, increased frequency of hospitalization, low quality of life, and poor health outcomes., Nondisclosure also denies the adolescent of the support they can greatly benefit from. The prevalence of disclosure varies from country to country and within countries. Sahay reported the prevalence rates of disclosure among adolescents of 33%–80.2% from low-resource settings.
The World Health Organization and the American Academy of Pediatrics (AAP) recommend that disclosure to children of school age should be in incremental stages over time, taking into consideration their cognitive and maturity levels., The AAP further recommends full disclosure for adolescents to ensure they are aware of the health implications of their decisions, thereby helping them make informed choices, especially regarding sexual activity and drug-related behaviors, their treatment, and participation in clinical treatment trials. Although there are various guidelines for disclosure, it continues to be a challenge. Sahay pointed out the need for effective guidelines for disclosure in resource-limited settings, recommending that disclosure here should begin at adolescence when behavior changes are noticed, and there is evidence of maturity like when the adolescent starts making friends with the opposite sex. This is similar to the age of 12 years recommended for disclosure from a study in Zambia. However, disclosure may lead to anxiety in the adolescent as well as depression and self-blame. There are few studies on disclosure among strictly adolescent groups in developing countries like Nigeria. Most studies on disclosure include sample populations covering a wide age range of children and adolescents. This study aims to determine the prevalence, pattern, and effect of disclosure among HIV-infected adolescents attending a tertiary hospital in Nigeria.
| Materials and Methods|| |
The University of Abuja Teaching Hospital (UATH) is located in Abuja, the Federal Capital Territory of Nigeria. The hospital serves its host community, other parts of Abuja, and the surrounding states.
HIV-infected adolescents and children access care mainly at its Paediatric Special Treatment Clinic. Adolescents between the ages of 10 and 19 years are seen in the adolescent clinic of the unit. Adherence counseling is one of the components of care received by all attending adolescents, and this is performed mainly by the trained clinic counselors. The clinic is supported by the United States President's Emergency Plan for AIDS Relief, Institute of Human Virology Nigeria, and the Federal Government of Nigeria. Antiretroviral (ARV) medications are provided free of charge to patients.
This was a descriptive, cross-sectional study.
Data were collected over 6 months, September 2015–February 2016.
Adolescents aged 10 years to 19 years, attending the adolescent clinic, who had been on ARV drugs for at least 6 months and had signed the informed consent (individually if aged 18 years or 19 years or signed by their caregivers if <18 years) and verbal assent if <18 years were included in the study.
Those who had temporary enrollments in the clinic or were mentally challenged at the time of the study were excluded.
All adolescents and/or their caregivers were approached for consent as they presented to the adolescent clinic. A convenience sampling method was used to select the adolescents attending the clinic, as there was limited number of adolescents. An information sheet about the study was given to all participants prior to signing the consent form.
The questionnaire was developed by the researcher and contained questions obtained from previous studies including sociodemographic characteristics, age and preferred age of disclosure, place of disclosure, subsequent disclosure, and feeling at disclosure among others. Adherence was measured using a 3-day recall, self-report, and blood was drawn for CD4 count and viral load measurements. The blood samples were analyzed using a Partec CyFlow Counter and Tachmann 96, Roche Amplicor assay, respectively. The viral load assay machine reads undetectable when viral load is ≤20 copies/ml.
The questionnaire was pretested and modified accordingly by the researcher using a cohort of 14 HIV-infected adolescents on ARVs in another health-care facility located in Gwagwalada.
Administration of the questionnaires was in a private environment and entries were done using a face to face interview which was filled in by the researcher or a trained assistant to try to ensure completeness and understanding of the questions. To ensure confidentiality, no names were written on the questionnaires, only identification numbers were given to each participant. The participant's names and numbers were entered into a register which was only accessible to the researcher. There was no disclosure of HIV status to participants who were not aware of their status unless specifically instructed to by their primary caregivers. Therefore, the word “HIV” was excluded from the consent forms and questionnaires.
Approval (FCT/UATH/HREC/PR/341) was obtained on 11th August 2015 from Health Research Ethics Committee of the University of Abuja Teaching Hospital, Gwagwalada, Abuja, Nigeria. The study complied with 2013 Helsinki's declaration and guidelines.
The principles of research ethics were maintained according to the Helsinki Declaration of 1975 as revised in 2013. The participants and caregivers were also made aware of what and how the data gathered will be used and disseminated, and that strict confidentiality would be adhered to. At the end of the study, the findings were related back to the Special Treatment Clinic Consultants and medical team taking care of the participants.
| Results|| |
Sociodemographic characteristics of the adolescents
One hundred and forty-five adolescents participated in the study. Eighty (55.2%) were male, 78 (53.8%) aged 10–13 years, 91 (62.7%) had secondary level of education, and 61 (42.1%) middle socioeconomic class. The mean age of the adolescents was 13.26 standard deviation [SD] ± 2.43, and the mean ARV treatment duration was 7.85 years SD ± 3.27. The sociodemographic characteristics are shown in [Table 1].
Characteristics of the primary caregiver of the adolescents
The primary caregivers were mainly mothers (n = 93; 64.1%). Others were fathers (n = 23; 15.9%), relatives (n = 13; 9.0%), siblings (n = 12; 8.3%), and others (n = 4; 2.8%). Ninety-one (62.8%) were married, while 32 (22.1%) were widowed, 17 (11.7%) single, and 2 (1.4%) separated.
Age and gender distribution for disclosure and nondisclosure among the adolescents
Fifty-nine adolescents (40.7%) were aware of their HIV status. The mean age of disclosure and nondisclosure were 14.59 SD ± 2.182 and 12.35 SD ± 2.163, respectively. The age group with the highest percentage for disclosure was 14–16 years (n = 34; 23.4%), while for nondisclosure was 10–13 years (n = 62; 42.8%). Three (2.1%) adolescents aged 17–19 years did not know their HIV status. The age and gender distribution for disclosure and nondisclosure are shown in [Table 2].
|Table 2: Age and gender distribution for disclosure and nondisclosure among the adolescents|
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Responses to questions on disclosure (age at disclosure, person who disclosed, place of disclosure, subsequent disclosure by adolescent, feeling at disclosure, and preferred age for disclosure).
Disclosure to the adolescents was done mainly at the age of 10–13 years (n = 34; 23.4%), by their mothers (n = 32; 22.1%) and at home (n = 43; 29.7%). Fourteen (23.7%) of the adolescents had revealed their status to mainly their siblings (n = 10; 6.9%). At disclosure, 19 (13.1%) felt bad/sad; 18 (12.4%) indifferent and 9 (6.2%) gave no response. After disclosure, 46 (31.7%) of the adolescents got support, and this support was mainly from their parents (n = 41; 28.3%). The preferred age for disclosure by the primary caregivers yet to tell their adolescent children or wards was 14–16 years (n = 33; 22.8%). The responses are depicted in [Table 3].
Relationship between disclosure and variables
There was a statistically significant relationship between disclosure and the mean age of the adolescents using Chi-square. The mean age for adolescents who knew their HIV status was 14.59 SD ± 2.182, while for those not aware was 12.35 SD ± 2.163, P = 0.000.
There was also a statistically significant relationship between disclosure and; social class, educational level of the primary caregivers, and CD4 count at P = 0.046, 0.01, and 0.003, respectively. The relationship was not statistically significant for disclosure and; gender, type of ARV medication, adherence using self-report and viral load at P = 0.59, 0.519, 0.476, and 0.729, respectively. This is shown in [Table 4].
| Discussion|| |
Disclosure of HIV status to the adolescents in this study was 40.7% similar to that found in a study in India (41.4%) but higher than reported in some other studies carried out in Africa such as 13.5% in Western Nigeria, 29% in eastern Nigeria, 33% in Ghana, and 22.3% in Tanzania but comparable to the report from a systematic review which accessed 22 articles from 12 countries. They reported disclosure prevalence for low- and middle-income countries to range from 1.7% to 41.0%. This study included children and adolescents mainly between the age ranges of 1–17 years. The difference may be because these studies' populations had children and adolescents from a wide range of ages, unlike this study that had a strict adolescent age group. Disclosure is reported to be higher among older children and adolescents as seen in a cross-sectional study from Eastern Nigeria where higher disclosure percentages were seen in adolescents aged 11–16 years compared with the younger children of a population of 106 children and adolescents aged 5–17 years.
The prevalence of disclosure was <57.1% reported in a study in the USA. Disclosure rates tend to be higher in developed countries because the caregivers are better educated and have a better understanding of the importance of disclosure.
Age at disclosure was highest among adolescents aged 10–13 years in this study. This age group is lower than 12–16 years reported in another study. Some studies report that caregivers who had not disclosed to their adolescent wards preferred disclosure to be done at ages 10 years to 16 years.,,,, This age range includes the preferred age for disclosure among the caregivers in this study. A common reason cited for delay in disclosure is that the child is too young. However, adolescents in a study recommended disclosure be done at the age of 12 years, while the African Network for the Care of Children Affected by HIV/AIDS (ANECCA) recommends disclosure from 5 to 7 years of age. Similarly, the Nigerian National Guidelines for Paediatric HIV and AIDS Treatment and Care recommends starting the process of disclosure at a similar same age range as that suggested by ANECCA depending on the child's level of comprehension and after obtaining consent from their parents or caregivers.
The mean age of disclosure in this study was similar to that reported in another study but higher than reported in some other studies.,, This further suggests that caregivers in this study prefer to delay disclosure. It was however surprising that three adolescents aged 17 years to 19 years were not aware of their HIV status. Therefore, there is an urgent need for adequate counseling of caregivers about disclosure and training for health-care workers on disclosure.
Disclosure was done mainly by the mothers and then fathers (parents), similar to other reports. Mothers tend to have a closer relationship with their children and vice versa and hence will most likely be able to discuss such sensitive issues with their children.
The place of disclosure was mainly at home similar to another study. In yet another study, health-care workers preferred disclosure to be carried out at home. However, adolescents prefer that disclosure be carried out in the clinics in the presence of health workers so that any questions or issues arising from the disclosure could be quickly addressed.,
Fear of subsequent disclosure by the adolescent is a recognized barrier to disclosure., In this study, only a few adolescents had disclosed their HIV status to others similar to the report from another study where 81% of the study population had not revealed their status to others Caregivers need to be counseled about the benefits of disclosure to an adolescent and why it outweighs the risks or fears of subsequent disclosure by the adolescents.
Different feelings were experienced by the adolescents after disclosure with majority feeling bad or sad and others indifferent. A study reported that subsequent to disclosure, adolescents felt anxious, depressed, and blamed themselves. However, studies show that the emotions felt at time of disclosure melt away over time and that patients respond positively to intervention programs. There is little evidence to support emotional or psychological harm occurring from disclosure.
The relationship between disclosure and mean age was significant similar to a study. This significant relationship was not seen in another study for age or median age. The age when a caregiver feels the child or adolescent is mature enough to handle the information and keep the knowledge to themselves are determinants for when disclosure will be done by the caregiver.
The relationship between disclosure and the level of education of caregivers was significant in this study similar to report from another study. In that study, caregivers who had educational status above fifth grade were more likely to disclose to their wards. The relationship was also significant for social class in this study. Comparing studies that looked at the relationship between disclosure and educational level and; disclosure and social class is difficult because different classification systems are used to classify these variables.
The relationship between disclosure and adherence was not significant. Various studies have reported conflicting effects of disclosure on adherence with some improving, worsening, or having no effect on adherence as reported by Nichols et al. in a systematic review study.
Limitations of the study
There were a few limitations to the study. No random sampling of study participants was done because of the limited number of adolescents attending the clinic. The HIV status of the caregivers was also not known, and finally, only HIV-infected adolescents on ARV medications were used in the study. These factors may have created bias and influenced the findings of this study.
| Conclusion|| |
The disclosure prevalence among the adolescents in this study was low. It is recommended that caregivers should be better counseled and encouraged on the need and importance of disclosure while evidence-based guidelines for the locality should be developed and implemented so as to improve the health outcomes of the adolescents.
Financial support and sponsorship
This study was financially supported by the researchers.
Conflicts of interest
There are no conflicts of interest.
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[Table 1], [Table 2], [Table 3], [Table 4]