Effect of HIV diagnosis disclosure on psychosocial outcomes in Thai children with perinatal HIV infection

Abstract

Summary A provider-assisted, counseling-based, pediatric HIV disclosure model was developed and implemented at two tertiary-care hospitals in Bangkok, Thailand. All undisclosed perinatally acquired HIV-infected children, ages 7–18 years, and their caretakers were offered the four-step disclosure service, including: screening, readiness assessments and preparation, disclosure sessions, and follow-up evaluations. To assess psychosocial outcomes of disclosure, we compared the scores of the Children Depression Inventory and the PedsQL 4.0™ at baseline and at 2-month and 6-month follow-up visits, and compared the scores of the Child Behavioral Checklist at baseline and at 6-month follow-up. Disclosure was made to 186 children, 160 of whom completed post-disclosure assessments. The median Children’s Depression Inventory score in 135 children decreased significantly from 11 at baseline to 8 at 2-month and 6-month follow-up (p < 0.01). The median PedsQL 4.0™ scores in 126 children increased significantly from 78 at baseline to 80 at 2-month and 84 at 6-month follow-up (p = 0.04). The median Child Behavioral Checklist scores were not significantly changed. In conclusion, pediatric HIV diagnosis disclosure using this model was found to have positive effect on the children’s mood and quality of life, and no negative effect on children’s behaviours. This disclosure program should be expanded to improve psychosocial health of HIV-infected children.

Disclosure of HIV status to children in resource‐limited settings: a systematic review

“…Six studies included only children and adolescents [17,31,48,50,53,57] and eight studies included only caregivers (parents or guardians) [25,37,38,42,45,51,55,58]. Ten studies included children and caregivers [30,36,40,41,44,49,52,54,56,59], while seven studies also included healthcare professionals [32,34,35,39,43,46,47]. …”

“…Some studies defined disclosure generally, using some variant of the concept of children knowing their HIV status [25,34,46,51,56–58], while other studies used a more stringent definition, considering disclosure to have occurred only if there was confirmation that the terms “HIV” or “AIDS” had been used with or specifically mentioned by the child [17,30,32,36,41,45,54,59]. Six studies required a child to have been informed of their status before participating in the study [32,35,40,41,56,57], ensuring that 100% of the sample had been disclosed to, but eliminating the possibility of providing an estimate of disclosure prevalence.…”

“…Six studies required a child to have been informed of their status before participating in the study [32,35,40,41,56,57], ensuring that 100% of the sample had been disclosed to, but eliminating the possibility of providing an estimate of disclosure prevalence. Sixteen studies reported proportions of disclosed children for their study population [17,25,30,31,34,36,38,45,48–52,54,58,59], ranging from 0 to 69.2%. Few studies included appropriate sampling methods and scientific design to estimate disclosure prevalence and were not designed to evaluate the impact of disclosure.…”

“…Most factors shaping disclosure were at the level of the child or the caregiver (Table 2). Child characteristics considered important to disclosure included the child's age [17,25,31–33,36–42,44,45,51,53,54,58], gender [46], education level [36,39,42,59], medication responsibilities [36], whether the child asks questions [35,37,41,42,51,55,56], and their perceived ability to understand their diagnosis [37,39,40,44,46,47,51,53,54]. The prevalence of disclosure varied most dramatically based on the age of the population, with most children not knowing their HIV status until older ages.…”

“…Numerous fears on the part of caregivers and healthcare providers were cited as barriers to disclosure. These included fear the child would disclose to others [25,32,35–38,42,44,45,49,51–55,59], fear of subsequent stigma or negative effects from others knowing the diagnosis [25,32,35,37,44,47,49,51,52,54–56,59], concerns for worsening the child's emotional or physical health [25,32,36,38,41–45,47,51,53–56,59], believing the child is unready or too young [25,35–37,39,43–45,47,51–55,59], feeling unprepared for questions or the disclosure process [43,53–56] and fear of the children's resentment [25,45,53,54,56,59]. In a survey of Nigerian caregivers’ reasons for non-disclosure, caregivers reported fears of the child subsequently telling other children (41%) or family and friends (33.7%), concerns the child was too young to understand (63%), fears the parents would be blamed (26.5%) and fears of psychological disturbance for the child (31%) [45].…”