Disclosure of parental HIV positive status to children among patients on antiretroviral therapy at the Dr George Mukhari Wellness Clinic: An explorative study.

Abstract

Introduction: HIV-positive parents taking antiretroviral therapy are faced with the difficult decision of whether and what details to share about their HIV status with their children. They need to decide if, when, and how they will disclose their illness to their children. Many reasons have been identified which influence parents’ decision to disclose their HIV status to their children.

Aim and objectives: The aim of the study was to explore parental decision and experiences of disclosing or not disclosing their HIV status to children and to explore strategies used by non-disclosed parents to conceal their HIV status from their children.

Methodology: Using a qualitative approach, six focus group discussions were conducted with a sample of disclosed and non- disclosed biological parents of children aged between 7-18 years. Participants were recruited from a wellness clinic at the Dr George Mukhari where they routinely collect antiretrovirals. A total of 44 parents (13 biological fathers and 31 mothers) were recruited and participated in two focus groups with disclosed parents, three with non disclosed parents and a pilot focus group interview with disclosed and non disclosed parents.

Findings: Disclosure to children was difficult and occurred within a context influenced by death, dying and discrimination. Despite parents being on ARVs, fear of death and dying continues to influence disclosure to children. HIV related practices like taking ARVs and child feeding practices predisposes parents to stigma and discrimination and was major reason for non-disclosure to children, family and neighbours. Whereas previously, prior to the availability of ARVs, parents disclosed to prepare children to face parental death, now disclosure occurs for children to support parents in adherence and when they are sick. The need for support is not surprising given that for parents who disclosed immediately, disclosure was prompted by ill health. The primary reason parents delayed disclosure is because they do not know how to tell the child. One other concern was that disclosure will makes children responsible for caring for parents. By delaying disclosure parents were protecting their children mostly from being hurt, from social rejection and discrimination and from fear of mother’s death.

Conclusion: Regardless of whether parents had disclosed or not disclosed the decision to disclose was difficult and emotional for parents, and is influenced by various factors. Due to stigma and discrimination disclosure in most families is often treated as a secret; parents do everything possible to protect their HIV status. Common strategies used to protect their HIV status include hiding antiretrovirals, removing labels from ARV bottles, use of different packages for ARVs, taking medication privately and substituting TB for HIV. Parents believed that by delaying disclosure they were protecting their children from consequences of disclosure. Most children reacted positively to disclosure and were protective and supportive to parents, while some non disclosed children became suspicious of parental status.

Recommendations: There is need for the development of health service practices that would protect HIV positive people taking ARVs from stigma and discrimination. Most HIV positive parents currently on ARVs have seronegative and seropositive children. They therefore need to develop strategies to discuss managing HIV illness especially with their seropositive children who also need to have their diagnosis disclosed. It is imperative that disclosure guidelines are developed to guide parents in disclosing HIV to children.

Key words: Parental, disclosure, non disclosure, HIV positive, children, qualitative research.