“Everyone sees you sitting there struggling with your food”: experiences of adolescents and young adults with cerebral palsy

Abstract

Objective: The impact of difficulties with eating and drinking in adolescents and young adults with cerebral palsy is unknown. The purpose of this study is to find out which difficulties adolescents and young adults with cerebral palsy experience with eating and drinking in daily life and how they deal with these difficulties. The study also explores how they think about themselves with respect to eating and what does or does not help regarding social participation.

Method: We collected the data from ten participants with spastic cerebral palsy (aged 15-23 years) living in the Netherlands. We used a qualitative study design with a conventional content analysis. Semi-structured in-depth interviews were used to identify meaningful factors related to eating and drinking difficulties. We coded relevant phrases from each interview and clustered and synthesized them into categories.

Result: We derived four categories from the transcripts: (I) perceived eating and drinking difficulties (e.g., not managing to eat all food textures and/or choking); (II) challenges in physical and social context (e.g., accessibility of restaurants, menu supply, and/or needing assistance or not); (III) dealing with eating and drinking difficulties (e.g., adaptation, food avoidance, and/or giving up); (IV) Negative feelings about their eating and drinking (e.g., shame, frustration, fear for choking, and/or concerns about the future). One striking finding was that most participants had not recently received either monitoring or intervention for their feeding skills.

Conclusion: This study shows that adolescents and young adults with cerebral palsy experience many restrictions in eating and drinking situations leading to negative feelings and lower participation levels, while little attention is directed towards these difficulties. Regular multidisciplinary rehabilitation programs should include evaluation, advice, and intervention regarding eating and drinking ability in order to increase social participation and self-management.

Implications for Rehabilitation

• Adolescents and young adults with cerebral palsy experience difficulties with eating, drinking, and swallowing, and they encounter difficulties in participating in mealtimes with family and friends.

• Although adolescents and young adults with cerebral palsy rated their eating and drinking abilities as reasonable, they reported feelings of shame, frustration, fear, distress, and concerns for the future or unknown environments.

• Regular multidisciplinary involvement with eating and drinking is needed for purposes of evaluation, advice, and intervention throughout the life course, adjusted to living conditions and the latest evidence.

• Adolescents and young adults with cerebral palsy showed limited initiative in asking for personal assistance in eating and drinking activities.

Keywords:

• Mealtimes
• dysphagia
• self-perception
• social environment
• feelings
• coping

Acknowledgements

The authors are grateful to the participants and parents who agreed to be interviewed and to share their experiences with us. We would like to thank Mandy ten Have, Emma van den Manacker, and Marieke Mocking, research assistants of the study speech-language therapy at HAN University of Applied Sciences in Nijmegen, for analyzing the interviews.

Disclosure statement

No potential conflict of interest was reported by the authors.