Understanding mealtime changes for adults with cerebral palsy and the implications for support services

*This manuscript was accepted under the Guest Editorship of Ted Nettelbeck.

Abstract

Background Changes in the swallowing capabilities of adults with cerebral palsy as they age may impact on their health, safety, and well-being.

Method Thirty-two adults with cerebral palsy aged between 30 and 69 years participated in in-depth interviews about their experiences of changes in their swallowing and related management of their mealtimes within the last two years. A constant comparative qualitative analysis of the interviews elucidated the changes they experienced.

Results Changes included increased coughing and choking, digestive or gastro-oesophageal symptoms, diet modification, loss of independence with psychosocial consequences. Participants reported unsatisfactory collaboration with service providers over mealtime management decisions and interventions.

Conclusions Adults with cerebral palsy may experience gradual changes in their swallowing and mealtime capabilities from as early as 30 years of age. Regular collaborative assessment and involvement of all stakeholders in decisions are important to facilitate compliance with recommendations, ongoing safety, and optimal well-being.

Keywords:

• cerebral palsy
• adults
• mealtime management
• dysphagia
• communication
• qualitative research
• lifelong disability

Notes

*This manuscript was accepted under the Guest Editorship of Ted Nettelbeck.