Status Disclosure in HIV Infected Children in Abakaliki , Ebonyi State , Southeast , Nigeria

Address for correspondence Maria Lauretta Orji Department of Paediatrics, Federal Teaching Hospital Abakaliki (FETHA), Ebonyi State, Nigeria. Tel No; +2347034565992 E-mail: drlauretta2002@gmail.com 1Dr. Maria-Lauretta Orji, MBBS, FWACP Consultant Paediatrician, 2Dr. Nnamdi Benson, Onyire MBBS, FWACP, Associate Professor, 3Dr. Emeka Onwe Ogah, MBBS, FWACP, Consultant Paediatrician. All from the Department of Paediatrics, Federal Teaching Hospital Abakaliki, Ebonyi State, Nigeria. Abstract


Introduction
Informing the child about his/her HIV status is a delicate task that is clouded with emotional and controversial issues, which is to be carried out by caregiver and/or health care provider 1 .Although there is no consensus to when HIV disclosure should be made to children, issues to be considered may include the needs, beliefs and feelings of both the child and the caregiver 1,2 .Considerations for the child's ability to comprehend the information and cope with the knowledge that they are HIV infected and caregiver's ability to cope with the stress of disclosure.Severely depressed or anxious caregivers may need to address their mental health needs before beginning the disclosure process.Both the children and caregivers are likely to have more positive outcomes from disclosure if they have a strong support system to assist them 2,3,4,5 .The child's current developmental and cognitive stage should be considered as well as the existing family dynamics and communication 2 .
Majority of the parents of these infected children are positive with HIV, since MTCT is >90% 6 .There is the feeling of guilt concerning the child's illness and the fear that disclosure of child's HIV status to him/her may also disclose other secrets such as parental HIV status and sexual promiscuity 7 .As such many parents would not agree to communicate openly the child's status.Studies have shown that open communication with the child about his/her HIV diagnosis improved children's psychological adjustment 8,9 .The long interval before disclosure of the illness may play a part in the poor psychosocial adjustment that manifest in anger and resentment towards parents and caregivers 9,10,11 .
Status disclosure should be a graded process, but Vreemanet al 12 in a review of 16 studies on disclosure of HIV status to children in resource limited setting observed that disclosure was mostly led by caregivers and as a one-time event.Status disclosure should be started as early as possible, preferably between the ages of 5-7 years and information given is gradual, starting with simple to complex issues 13 .Disclosure is achieved using tools and languages appropriate for the child's developmental capacity such as storytelling, cartoons, drama and use of fl ip charts 13 .Vreemanet al 12 reported level of status disclosure to be between 0 to 69.2%.Mialky et al 14 reported 43% disclosure rate with mean age of nine years, 23% of them have disclosed status to school authority, while Brown et al 15 in a study in Nigeria reported a lower level of status disclosure (13.0%).Common barriers to status disclosure in the review by Vreeman et al 12 were fear that the child would disclose HIV status to others, fear of stigma and concerns of emotional and physical health of child.
There is paucity of data on disclosure of status of HIV infected children in Abakaliki, Southeast Nigeria.Hence the need for index study The objectives of the study were to determine; the level of status disclosure among HIV infected children in Abakaliki, the pattern of disclosure among subjects and the relationship between disclosure of status and adherence to medication.

Material and Methods
Ebonyi State has a total population of 2,173,501 people, majority of which are Igbos 16 .The study is a prospective hospital based study that was carried out in Federal Teaching Hospital Abakaliki (FETHA) Ebonyi State, from February to August 2017.
The Federal Teaching Hospital Abakaliki (FETHA) operates a provider-initiated HIV testing and counseling (PITC), in which every child that presents at the Children Out-patient Clinic is off ered HIV antibody test irrespective of presenting complaint, except on objection by the caregiver, however objection (opt-out) of the caregiver to the screening test does not aff ect quality of treatment given to the child.Any child who tested positive to the test is referred to the Paediatrics Infection Disease Clinic for further evaluation and management.
Sample size was calculated using the prevalence rate reported by Brown et al 15 (13.0%) from which the sample size of 94 was obtained from the above prevalence rate.Subjects aged 5 years to 17 years, that had been regular to infectious disease clinic in the past one year prior to the study were recruited consecutively, until sample size was met.A structured questionnaire was used to obtain information.
All the subjects that participated in the study were on HAART.Immunological classifi cation of subjects was done based on age related CD4+ T lymphocyte count and percentages.Based on this, subjects were classifi ed as not signifi cant, mild, advanced or severe.Subjects were advised to come for follow-up visit with their pill container.Assessment of adherence was done in the clinic by direct questioning and pill count.
Ethical approval was sought and obtained before commencement of this study.The study was explained to parents/guardian and only those who gave informed consent were included in the study.
The data obtained was entered into spread sheet using the Microsoft excel 2007 and the analysis was done using the Statistical Package for Social Science version 19.0.Quantitative variables were summarized using means and standard deviations.Frequency tables and charts were constructed as appropriate.The signifi cance of associations between variables was tested using Chi-square and Fischer's exact tests for comparison of proportion.The level of statistical signifi cance was achieved if p < 0.05

Results
Thirty-one (33.0%) subjects had received a form of information about their status from caregivers or health workers.The average age at disclosure was 12.48± 2.46, with an age range of 7 to 17 years.Subjects at mid (14-16 years) and late (>16 years) adolescent age groups had 100.0%disclosure when compared to 33.3% prevalence rate of disclosure seen in children at early adolescent (10-13 years) and 13.0% seen before the adolescent age as depicted in Table 1.There was a signifi cant relationship between age and information given regarding HIV status as seen in Table 1 Among the subjects that have received information about their status, 22 (71.0%) were given full information about HIV, majority of who are adolescents (95.5%).Four (12.9%) were told that they have an illness that require medication, 4 (12.9%) were told that the illness that killed their parent (father) is what they are suff ering from and one (3.2%)was told storey about a disease that contaminates the blood in the body.Table 2 shows that More HIV disclosure was done in the hospital compared to home.Information about HIV status disclosure given at home was majorly partial (66.7%).There was a signifi cant relationship between information given in disclosure and venue of disclosure as shown in Table 2. Two adolescents were told that they had illness that required daily medications and one was told that The commonest reasons (47.6%) why caregiver would not want to disclosure the HIV status to the subject was the belief that the subjects may not understand as shown in Table 3.Some other caregivers said that their children/wards were too young for such information, while others were afraid of disclosure to peers as depicted in Table 3 below For majority of the subjects (80.6%), disclosure was circumstantial.Only 6 (19.4%) out of the 31 subjects knew their HIV status under no circumstance.Table 4 shows the circumstances that surrounded disclosure of HIV status in the subjects.
A signifi cant number of subjects were adherent to their ART (85.1%).Six (19.4%) out of the 31 subjects that were aware of their HIV status were non-adherent to ART.Awareness of status did not have a signifi cant relationship to adherence on ART as shown in Table 5 below.

Discussion
HIV infection defers from other chronic illnesses possibly due to stigma and discrimination attached to the HIV infections.When and how to disclose HIV status to children infected with HIV becomes an uphill task.A total of 31 (33.0%) of HIV infected children studied had a form of information about their status.This is higher than 13.0% reported by Brown et al 15 in a study in Ibadan, southwest, Nigeria but consistent with a later study carried out by Ubesie et al 17 (29.0%).This suggests an increase in enlightenment and awareness of the need of disclosing HIV status to infected children.The mean age of HIV disclosure was found to be 12.48± 2.46 years in index study.This was rather late when compared to nine years reported by Mialky et al 14 but similar to 11.52 ±2.25 years reported by Ubesie et al 17 .Studies show that early disclose of HIV status like most chronic illnesses improves self esteem, reduces the risk to fantasies about illness and improves access to care and support.The delayed disclosure of HIV status observed in this study could be related to fear of the unknown.Many caregivers would prefer to hide the status of their children and/or wards until when they can no longer hide it due to ill-health or other circumstances At the age of seven years, a child can ascent to a research meaning that he/she can understand and appreciate some level of information given.This is corroborated by Lansdown and Benjamin 18 that reported that children by eight or nine years were able to fully understand the concept disease and death.However this study noted that majority of caregivers felt their children/ wards may not understand if told their status.This is gross assumption.The drawback to this assumption is that the subjects may likely get to know their HIV status inadvertently, creating room for mistrust and suspicion.
Status disclosure as seen in this study was mainly hospital based (61.3%).This deferred from that observed by Vreemanet al 12 who reported HIV status disclosure mostly by caregivers and done at home.The home environment is an ideal place for HIV disclosure because HIV disclosure is beyond just telling the child his/her HIV status.There is so much emotional and psychosocial interplay that if well harnessed would achieve the purpose of the disclosure.With the subject relaxed and unsuspecting in a home environment, the caregiver's self esteem and confi dence is heightened and then the needed information is given as deemed right for the child age and cognition 19,20 .A total of 35.5% of subjects were told of their HIV status while on admission for ill-health in the health facility.All of whom were adolescents and were managed for HIV/AIDS related illness.Also all had history of ill-health that was managed by over the counter medications and traditional medicines.This underscores the need to improve health seeking behavior of caregivers in developing countries like Nigeria Vreemanet al 12 in a systematic review reported that the disclosure was a one-off event.This was similar to what was observed in this study.The subjects that were told at seven years that they had illness in their body that needed daily medication had no other information given even at age 11 and others that were told at the demise of their parents that the illness that their parents suff ered and died from was what they have, did not receive any other information even at age 12.
It was also observed that 29.0% of subjects that received information about their HIV status were told because they were not adhering to drugs, so status disclosure became the means of re-enforcing adherence.Only 13.0% and 33.3% of pre-adolescents and mid adolescents respectively had information about why they are on drugs.The level of information given was graded and a total of 96.8% of subjects with full HIV disclosure were adolescents.
Adherence to medication is a shared responsibility between health care provider and a subject who has understood the need for drugs and is willing to take the right dose of drug and at the right time following an agreed plan.This study noted that 81.5% of subjects were adherent to drugs but there was no signifi cant relationship between adherence to drugs and HIV status disclosure.However a look at the circumstances surrounding disclosure and the information given at disclosure, raises questions as to whether the subjects where compelled to take their drugs or they were actually adherent to their antiretroviral.

Conclusion
The prevalence rate of HIV status disclosure in this study was low, done rather late and mostly in a hospital setting by healthcare providers.Parents and caregivers should be empowered with knowledge and skill to disclose HIV status to their wards

Table 1 :
Relationship between socio-demographics and information given regarding HIV status

Table 2 :
Pattern of information given, age and venue of information delivery

Table 3 :
Reasons for non-disclosure of HIV status to subjects

Table 4 :
Circumstances surrounding disclosure of HIV status among subjects

Table 5 :
Relationship between disclosure of HIV status and adherence to ART