Parents' and children's emotions spanning the HIV disclosure process in Kenya

Background: HIV disclosure from parent to child is challenging. While disclosure is expected to be emotional for parents and children, the total disclosure experience has not been described. The purpose of this study was to understand the lived experiences of HIV-positive parents and their children in Kenya during the disclosure process.

Methods: Phenomenological qualitative data were collected using in-depth semistructured interviews. Thirty four participants consisting of HIV-positive parents, their children (infected and uninfected), and healthcare professionals (HCPs) were enrolled. Data analysis was performed using NVivo 8 and the Van Kaam method.

Results: Pre-disclosure, parents were plagued with fear/worry of stigma, judgment, rejection, blame; and the reaction/consequences of disclosure on their children. Guilt and shame for bringing the illness into the home abounded. Children sensed, wondered, and worried about secrets within their homes. During disclosure, parents experienced catharsis, guilt, confusion, and panic when children reacted negatively. Children experienced shock, disbelief, anger, sadness, worry, depression, confusion, and catharsis from finally knowing what was wrong. Post-disclosure parents alternated between relief, guilt, and depression as their children’s behavior changed due to disclosure. Children experienced unhappiness, depression, hopelessness, self-hate, and withdrawal. Recovery time varied lasting from a few hours to four months later; some children ultimately felt relief and self-acceptance. However, stress exposure caused disclosure emotions to reappear.

Conclusion: HIV disclosure process is accompanied by alternating negative and positive feelings for both parents and children. To ease the process, HCPs should provide support services such as disclosure practice sessions/trainings, counseling, peer support groups, and stress management.