HIV Disclosure in Children in a Tertiary Hospital in Southern Nigeria–Child’s Perspective

Background: Disclosure of HIV status to children is essential for disease management. Studies on disclosure in children have largely described it from the health provider’s perspective or caregiver’s perspective. Caregivers’ and children’s reports about children’s feelings and distress can however differ. Understanding the disclosure process from the perspective of HIV-positive children will therefore better portray the impact it had on them.

Aim: The aim of the study was to explore from the child’s perspective the process of disclosure, the impact it had on them, how they have coped and suggestions on how they think it could be done better.

Methods: A cross-sectional study of HIV-infected children and adolescents aged 8–18 years who are aware of their status attending paediatric HIV clinic at the University of Port Harcourt Teaching Hospital (UPTH), Port Harcourt, Nigeria from April 2015 to March 2016. Data were collected using an open-ended questionnaire administered by a Paediatric health care provider. Information sought included: Biodata (age, gender), educational levels of the child, family characteristics (primary caregiver, orphan status), age at disclosure, process of disclosure, the impact of the disclosure, how they have coped, what they did not like about the way they were told and suggested better ways of telling the children.

Results: Seventy-eight HIV-positive children and adolescents were interviewed. Their ages ranged from 8 – 18 yrs with a mean age of 14.74±2.23 years. Forty (51.3%) were males, 50 (64.1%) were in secondary schools, 43 (55.1%) were orphans and the mode of transmission was vertical in 70 (89.7%). In majority 33 (42.3%), the biologic mother was the primary caregiver. Majority of the children 34 (43.6%) had their status disclosed to them between 13 and 14 years. The mother alone did the disclosure in 30 (38.5%). Thirty-six (46.2%) were already aware of their status before disclosure. Disclosure was a one-off event without discussions in 48 (61.5%). The commonest immediate reactions was depression 48 (61.5%). The majority 48(61.5%) became more prayerful as a coping strategy. All 78 (100%) agreed that disclosure has positively impacted on their taking their ARV drugs and clinic attendance.

Concerning suggestions from the children, 36 (46.2%) said the most appropriate age for disclosure should be 12-13 years, 54 (69.2%) suggest that both parents should do the disclosure while 60 (76.9%) said that the children should be told how they got infected. Their major concern was having to take drugs for life 60 (76.9%).

Conclusion: Disclosure process is suboptimal. Understanding the disclosure process from the perspective of HIV-infected children, therefore, is critical to developing interventions to improve disclosure. Most of the parent’s fears of negative impact of status disclosure may be exaggerated. There is need for health care providers to develop a plan with the caregivers of HIV-infected children on the optimal disclosure process and how to anticipate and resolve questions the children may have following disclosure.