CAREGIVERS' EXPERIENCES IN CARING FOR HIV POSITIVE CHILDREN: A QUALITATIVE STUDY AT A COMPREHENSIVE CARE CENTRE IN KENYA

Abstract

Purpose: Caring for HIV positive children poses various challenges and uncertainties depending on the disclosure of their status. To explore the caregivers' experiences in caring for HIV positive children before, during and after disclosure of their HIV positive status.

Methodology: A qualitative study was conducted a Comprehensive Care Centre in a national referral Hospital in Kenya. The study population included parents/guardians of HIV positive children with complete disclosure of their HIV status. Data was collected through in-depth interviews. The socio-demographic characteristics of the respondents were analysed using descriptive statistics. The qualitative data is analysed by use of content analysis and presented in themes and narratives.

Results: The results revealed that caring for these children was more challenging before disclosure than after disclosure. The main challenge was in responding to the children's questions in regards to their health status. The questions asked by the children before disclosures include the reason for treatment, clinic follow up and when treatment will stop among others. The study further established that the parents/guardians expressed diverse fears of how the children might react during disclosure; however, the children mostly did not display the feared reactions at the moment of disclosure. Finally, the findings of this study established that care after disclosure becomes easier and that the children become more engaged in their own care.

Conclusion: The study found that caring for HIV positive children is less challenging after disclosure of their HIV status.  Further, fears by caregivers are unfounded and there are minimal negative reactions by the children upon disclosure. In order to become actively engaged in their own care, children as early as 11 years old need to be informed about their positive HIV status.

Unique contribution to practice, theory and policy: The healthcare providers should ensure early preparation of the caregivers for disclosure to the children of their HIV status. Further, community members and school teachers need to be educated about the beneficial effects of disclosure of an HIV diagnosis to a child or adolescent. Research is needed on the development and implementation of caregiver support groups similar to that of children living with HIV.

Purpose: Caring for HIV positive children poses various challenges and uncertainties depending on the disclosure of their status. To explore the caregivers' experiences in caring for HIV positive children before, during and after disclosure of their HIV positive status.

Methodology: A qualitative study was conducted a Comprehensive Care Centre in a national referral Hospital in Kenya. The study population included parents/guardians of HIV positive children with complete disclosure of their HIV status. Data was collected through in-depth interviews. The socio-demographic characteristics of the respondents were analysed using descriptive statistics. The qualitative data is analysed by use of content analysis and presented in themes and narratives.

Results: The results revealed that caring for these children was more challenging before disclosure than after disclosure. The main challenge was in responding to the children's questions in regards to their health status. The questions asked by the children before disclosures include the reason for treatment, clinic follow up and when treatment will stop among others. The study further established that the parents/guardians expressed diverse fears of how the children might react during disclosure; however, the children mostly did not display the feared reactions at the moment of disclosure. Finally, the findings of this study established that care after disclosure becomes easier and that the children become more engaged in their own care.

Conclusion: The study found that caring for HIV positive children is less challenging after disclosure of their HIV status.  Further, fears by caregivers are unfounded and there are minimal negative reactions by the children upon disclosure. In order to become actively engaged in their own care, children as early as 11 years old need to be informed about their positive HIV status.

Unique contribution to practice, theory and policy: The healthcare providers should ensure early preparation of the caregivers for disclosure to the children of their HIV status. Further, community members and school teachers need to be educated about the beneficial effects of disclosure of an HIV diagnosis to a child or adolescent. Research is needed on the development and implementation of caregiver support groups similar to that of children living with HIV.