Caregivers' Feeding Experiences and Support of Their Child with Cerebral Palsy.

Abstract

Feeding difficulties are often reported in children with cerebral palsy (CP) and are associated with caregiver stress. This study explored the feeding experiences and support of caregivers with children who have CP. A qualitative approach was used where semi-structured telephone interviews were conducted and audio recorded. Thematic analysis was used to code and analyse the transcribed interview data from the eleven mothers that participated. Four major themes were identified from the data: Child-centred world, Making decisions, Knowing their child, and Seeking and receiving support. Caregivers knew their child’s unique needs and made daily decisions around feeding based upon the child’s feedback and changing condition. Family support was viewed as important, although the caregivers still reported feeling stressed. Health professional support varied from “amazing” to “frustrating”, which contributed to the caregivers’ stress. However, no single support strategy was appropriate as their needs or preferences varied. It is recommended that health professionals take an individualised partnership approach with caregivers and their child, with particular attention to those caregivers who lack a friend or family support and those who are physically isolated.