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.