A qualitative study on the undesirable experiences of caregivers raising children with developmental disabilities in a rural community in South Africa
Résumé
Parents and caregivers of children with developmental disabilities have a dual responsibility of addressing the child’s unique developmental needs while also negotiating broader societal expectations surrounding caregiving. Sustaining a balance between caregiving demands and personal well-being is often challenging, which increases their vulnerability to burnout and adverse mental health outcomes. This qualitative study used focus group discussions to explore the lived experiences of caregivers who were raising children aged 6 months to 12 years with various developmental disabilities in a rural setting. Participants were purposefully recruited from a regional hospital in northern KwaZulu-Natal, South Africa, where they were accessing healthcare. Eighteen (n = 18) isiZulu-speaking caregivers participated in five focus groups. The data were analysed using a thematic approach that followed a set framework. Three overarching themes and eight subthemes emerged from the data, capturing their experiences, the intersecting challenges they encountered, and their responses to and adaptations to the undesired outcomes. The findings showed a significant gap in knowledge and access to information regarding children's conditions among families, community members, and health professionals. Psychological acceptance was foundational for coping with challenges and was perceived as essential, requiring a swift adjustment to their current reality. This study highlights the persistent and multifaceted challenges faced by caregivers of children with developmental disabilities. The primary burdens are rooted in systemic issues, specifically healthcare limitations and educational barriers. The findings show an urgent need for structured interventions that prioritise caregiver mental health.
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