{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,15]],"date-time":"2026-09-15T13:55:11Z","timestamp":1789480511157,"version":"build-2803163510"},"reference-count":44,"publisher":"AOSIS","issue":"2","license":[{"start":{"date-parts":[[2025,11,21]],"date-time":"2025-11-21T00:00:00Z","timestamp":1763683200000},"content-version":"unspecified","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"abstract":"<jats:p>Background:\u00a0Children 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\u2019 experiences is required for planning and implementation of effective support services.\nObjectives:\u00a0The study aimed to explore the experiences of caregivers of children with CP who have FSD, regarding the burden, QoL and support needs.\nMethod:\u00a0A qualitative case study design was used, involving eight mothers of children aged 2\u20138 years, recruited from a hospital-based CP clinic. Participants (aged 25\u201342 years) engaged in semi-structured telephonic interviews conducted in English and isiXhosa. Thematic analysis was conducted to generate themes and sub-themes.\nResults:\u00a0Thematic analysis yielded seven main themes:\u00a0Worry;\u00a0Feeding is everything;\u00a0Identified support needs;\u00a0What helps me cope?;\u00a0Cost of caregiving;\u00a0Hopeful caregiving\u00a0and\u00a0Shortfalls of healthcare system and society, reflecting emotional strain, the centrality of feeding, specific support requirements, caregiver resilience, multifaceted burden and hope.\nConclusion:\u00a0Caregiver 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.\nContribution:\u00a0The 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.<\/jats:p>","DOI":"10.4102\/sajcd.v72i2.1124","type":"journal-article","created":{"date-parts":[[2025,10,10]],"date-time":"2025-10-10T08:26:49Z","timestamp":1760084809000},"update-policy":"https:\/\/doi.org\/10.4102\/crossmark-policy","source":"Crossref","is-referenced-by-count":2,"title":["Feeding and swallowing in cerebral palsy: Caregiver burden, quality of life and support needs"],"prefix":"10.4102","volume":"72","author":[{"ORCID":"https:\/\/orcid.org\/0009-0007-5825-5240","authenticated-orcid":false,"given":"Raquel","family":"Lewis","sequence":"first","affiliation":[{"id":[{"id":"https:\/\/ror.org\/03p74gp79","id-type":"ROR","asserted-by":"publisher"}],"name":"University of Cape Town"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-6152-5551","authenticated-orcid":false,"given":"Michal","family":"Harty","sequence":"additional","affiliation":[{"id":[{"id":"https:\/\/ror.org\/03p74gp79","id-type":"ROR","asserted-by":"publisher"}],"name":"University of Cape Town"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0000-6480-513X","authenticated-orcid":false,"given":"Vivienne","family":"Norman","sequence":"additional","affiliation":[{"id":[{"id":"https:\/\/ror.org\/03p74gp79","id-type":"ROR","asserted-by":"publisher"}],"name":"University of Cape Town"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"2580","published-online":{"date-parts":[[2025,11,21]]},"reference":[{"key":"ref0","doi-asserted-by":"crossref","unstructured":"Abdel Malek, S., Rosenbaum, P., & Gorter, J.W. 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