When I do, I become someone: experiences of occupational performance in young adults with cerebral palsy

Abstract

Purpose: Persons with cerebral palsy, even if they have relatively good motor functions, have a lower level of independence and participation in everyday activities than persons of the same age without disabilities. However, there are few descriptions of how persons with cerebral palsy themselves perceive their performance of activities in everyday life. The aim of this study was to describe the perceptions that young adults with cerebral palsy have of occupational performance in everyday life.

Methods: This qualitative interview study includes 10 participants with cerebral palsy classified with Manual Ability Classification System level I–II, aged 19–30 years. The data were analyzed using a phenomenographic approach.

Results: The interviews resulted in five categories: “Important to do”; “Demanding but can be facilitated”; “Excludes or includes”; “Diminishes me or makes me grow”; and “Comes at a price”.

Conclusions: The young adults with cerebral palsy consider that, despite life being so demanding, it is extremely important to perform activities themselves and to feel included, as this enables personal growth. Hence, it is necessary to advance intervention methods based on personally important activities to enable individuals with cerebral palsy to find their own way to perform activities. Further research is needed to increase opportunities for individuals with cerebral palsy to perform everyday activities without too much fatigue and struggle.

Implications for Rehabilitation

• For young adults with cerebral palsy it is extremely important to perform everyday activities independently; by DOING activities they form their identity.

• Intervention models aimed to enable persons with cerebral palsy to be involved and find their own way to perform everyday activities should be emphasized.

• Attention must be paid to how mental fatigue is manifested in persons with cerebral palsy.

• To build self-awareness and self-efficacy, individuals with cerebral palsy need information, early in life, about cerebral palsy and the multifaceted difficulties the disability might lead to.

Keywords:

• Activities of daily living
• cerebral palsy
• self-concept
• social participation
• fatigue
• cognition

Acknowledgements

The authors would like to thank the 10 young adults with CP who participated in the study. The authors gratefully acknowledge this support.

Disclosure statement

The authors report no conflicts of interest. The authors alone are responsible for the content and writing of the paper.

Additional information

Funding

The study was supported financially by the Local Research and Development Council, Södra Älvsborg, the Local Research and Developmental Council, Habilitation & Health, Västra Götalandsregionen, the Swedish Association of Occupational Therapists, the RBU Research Foundation and the Folke Bernadotte Stiftelsen.