Care burden and support needs of caregivers of infants and children with CHDs and dysphagia

Abstract

Dysphagia is common in children with CHDs, resulting in multiple stressors for their caregivers including having a child with a serious medical condition and coping with their child’s feeding needs. However, relatively little is known about caregivers’ perceptions and experiences of the burden of care and support needs for their child with a CHD and dysphagia in low-middle income contexts. This qualitative study investigated the burden of care and support needs identified by parents of children with CHDs and dysphagia in a single centre in South Africa. Semi-structured interviews took place in a tertiary hospital with seven mothers of children with CHDs and dysphagia, followed by content analysis. Participants described four main impacts of their child’s condition, which included worry, the burden of caregiving, emotional responses, and acceptance and coping. The participants were well-supported by speech-language therapists and dieticians, but suggestions for additional support included support groups and using mobile messaging apps for communication with peers and professionals. The study has important implications for understanding challenges faced by caregivers of children with complex needs in low-middle income settings and will be useful to inform and improve holistic healthcare practice for families of children with CHDs and dysphagia.