The bodily experience of cerebral palsy: a journey to self-awareness

Abstract

Purpose: The aim of the study was to describe the lived bodily experience of cerebral palsy (CP). Method: This was a descriptive phenomenological inquiry. Ten participants were interviewed about their bodily experiences of living with CP. Interviews were semi-structured around pain and fatigue. Inductive thematic analysis was used to identify themes. Results: The bodily experience of CP centered on issues of fatigue and pain as a feeling of muscle soreness. An overwhelming amount of the discussion on fatigue emphasized the fatigue that occurs with walking and prolonged activity. Self-awareness of the individuals’ own bodies and adapting activity to continue to participate in various aspects of their lives emerged as the most important theme. Some participants used strategies to manage their pain or fatigue; other participants were not yet fully aware of how to recognize signs of fatigue and/or how to adapt their activities. Conclusions: Self-awareness appears to be an important process to be fostered by service providers and parents. Specifically, encouraging youth with CP to be aware of their own bodies and the effects (positive and negative) of activity on pain and fatigue should be incorporated into transition programs as the individual becomes responsible for his or her own health care needs.

Implications for Rehabilitation

• Fatigue is a major concern for some youth and young adults with cerebral palsy.

• Adolescents and young adults with cerebral palsy use a variety of techniques (including adapting or restricting activity and building in rest breaks) to manage fatigue.

• The process of self-awareness should be fostered by health care professionals leading up to and during transition from pediatric to adult care.

• Clinical conversations should explore the role of exercise, adaptive equipment, rest and other strategies for dealing with fatigue with a focus on understanding each client’s needs individually.

• Cerebral palsy
• fatigue
• qualitative research

Acknowledgements

We would like to thank Dr Matthew Carter, Assistant Professor at Western University, for his review of this manuscript and feedback regarding the resonance of the themes with his personal experiences. The authors are grateful for the support provided through the Qualitative Methodologies in Health Research Laboratory at Western University, Faculty of Health Sciences.