Caregiver motivation and child well-being: HIV status disclosure among pediatric patients at Moi Teaching and Referral Hospital, Uasin Gishu, Kenya

Abstract

Disclosure of Human Immunodeficiency Virus [HIV] status to children is a complicated procedure and an emotional task especially within resource-poor environments. Besides supporting the adherence to treatment, disclosure plays numerous critical roles, including mental strength and independence of a child. Nevertheless, caregivers experience the dilemma of when, how and whether to disclose depending on cultural, emotional and contextual issues. The aim of the study was to investigate reasons why caregivers decide to disclose the HIV status to their children; evaluate the psychological, emotional, and social impacts of such disclosure to their children living with HIV in Moi Teaching and Referral Hospital (MTRH). The research work used a descriptive survey directed by the Social Cognitive Theory. The target population involved 85 children with HIV, 50 care givers, and 70 health care providers. Inclusion of the caregivers was formed through a purposive sampling approach to cover the various samples of respondents regarding their status of disclosure (whether they disclosed or not). In case of the participants (children) stratified sampling was conducted based on age group (1013 and 1417 years) to assess the difference in disclosure due to age. The sample calculating was done through the Cochran formula (1977), the confidence level of 95 percent and 10 percent adjustment of non-response. They resulted in having 100 caregivers and 60 children with HIV as the final sample. The structured questionnaires were used to collect data and the statistic package for social sciences (SPSS) to analyse the data presentation in frequencies and percentages. IDIs: 20 in depth interviews with the caregivers; focus group discussion-4 with the adolescents with HIV. The results showed that, age, perceived emotional readiness of the child, fear of stigma and the general comfort level played a big role in the disclosure decision of the caregivers. Some care givers had a view that disclosure would also offer an avenue to better adherence and psychological readjustment but other care givers were scared that it might lead to emotional damage to the child or social discrimination. The finding of the study also revealed that those children who knew their HIV status mostly underwent various emotional predispositions such as shock, sadness, and reaction of relief and better cooperation with care. In the long-term, the disclosure was associated with the enhanced social functioning, the improved knowledge of ART, and psychological better results. To conclude, disclosure of the HIV status even though difficult is a key component in promoting the well-being of the paediatric patient. The research suggests specific training of caregivers to develop disclosure plans, the development of age appropriate counselling procedures and systems to support both a caregiver and the child that can support disclosure as a process successfully.