Carer- and self-reported mealtime challenges for children and young people with cerebral palsy: What do they tell us?

PURPOSE: This study describes the carer- and self-reported mealtime challenges for children and young people with cerebral palsy. These data are novel and incorporate the consumer's perspective to inform service delivery. METHOD: Participants included children and young people with cerebral palsy (aged 1-26 years) or their caregivers in Western Australia. Participants wrote comments to two open-ended questions regarding causes of coughing or choking during meals from a larger survey on respiratory risk factors. These written responses form the dataset for the present study. Data were analysed using thematic analysis. RESULT: Of 551 respondents, 272 answered the open-ended questions (n = 255 carer-reported, n = 17 self-reported; mean age of children and young people with cerebral palsy = 10.6 years [SD = 6.1]; n = 160 male; n = 54 V on the Gross Motor Functional Classification Scale; n = 85 with texture modifications and/or tube). Only 8.1% reported no safety concerns at mealtimes. The issues respondents reported around mealtime challenges and safety were collated into five themes: (a) types of food and drink, (b) oral skills and swallow function, (c) mealtime behaviours, (d) mealtime assistance, and (e) health and medical issues. CONCLUSION: This study identifies key mealtime challenges for children and young people with cerebral palsy. Clinical practice recommendations are provided. They involve multifactorial assessment, individualised planning, and multidisciplinary management.