Feeding and swallowing in cerebral palsy: Caregiver burden, quality of life and support needs

Abstract

Background: Children with cerebral palsy (CP) often experience feeding and/or swallowing difficulties (FSD), which are lifelong, necessitating long-term care by caregivers, particularly in resource-constrained contexts like South Africa. This ongoing responsibility can lead to burden and reduced quality of life (QoL) for the caregiver and child. Exploring caregivers’ experiences is required for planning and implementation of effective support services.
Objectives: The study aimed to explore the experiences of caregivers of children with CP who have FSD, regarding the burden, QoL and support needs.
Method: A qualitative case study design was used, involving eight mothers of children aged 2–8 years, recruited from a hospital-based CP clinic. Participants (aged 25–42 years) engaged in semi-structured telephonic interviews conducted in English and isiXhosa. Thematic analysis was conducted to generate themes and sub-themes.
Results: Thematic analysis yielded seven main themes: Worry; Feeding is everything; Identified support needs; What helps me cope?; Cost of caregiving; Hopeful caregiving and Shortfalls of healthcare system and society, reflecting emotional strain, the centrality of feeding, specific support requirements, caregiver resilience, multifaceted burden and hope.
Conclusion: Caregiver burden and QoL are closely linked and shaped by the emotional, physical, social and financial demands of caregiving. While caregivers described their unmet support needs, they also identified positive aspects of caregiving, including a sense of purpose and connection with their child.
Contribution: The findings offer insight into caregiver experiences in South Africa and underscore the need for tailored, contextually relevant interventions to improve caregiver well-being and child outcomes.