Coping with the challenges of caregiving: A qualitative exploration of the experiences of family caregivers of children with rare diseases in South Africa.
WHY IT MATTERS
If you're caring for a child with a rare disease, this research validates that your struggles are real and documented — and shows healthcare systems need to provide better caregiver support services.
This study talked to 10 parents in South Africa whose children have rare diseases to understand what challenges they face as caregivers. The parents said they struggle with stress, worry about their children's health, and sometimes feel tired and sad. The researchers want doctors and hospitals to better understand what caregivers go through so they can offer more help and support.
Coping with the challenges of caregiving: A qualitative exploration of the experiences of family caregivers of children with rare diseases in South Africa. Abstract: Rare diseases are a group of chronic conditions with low individual prevalence. These conditions predominantly affect children and severely impact their lives. Oftentimes, children with rare diseases receive care from family caregivers, who experience several challenges in their roles and regularly struggle to cope with caregiving demands, with consequences for their physical and psychological well-being. Therefore, enhanced understanding of caregivers' unique challenges and coping is required. This phenomenologically situated, exploratory qualitative study explored the caregiving experiences of 10 South African parents (aged 22-54) whose children have rare diseases and receive care at a public hospital in Cape Town, South Africa. These parents were recruited using a convenience strategy a Authors: van Niekerk et al. Journal: Journal of genetic counseling MeSH: Humans, South Africa, Caregivers, Adaptation, Psychological, Female, Adult, Male, Middle Aged, Rare Diseases, Qualitative Research