Self-reported factors contributing to fatigue and its management in adolescents and adults with cerebral palsy

Abstract

Purpose

To explore the self-reported factors that generate fatigue and to describe fatigue self-management strategies from the perspectives of adolescents and adults with cerebral palsy (CP).

Materials and methods

Text responses to open-ended questions of the Fatigue Impact and Severity Self-Assessment from 160 participants (mean age 22.4 years) across all GMFCS levels were coded using inductive line-by-line coding and then grouped together to generate larger categories for each question. Frequency counts associated with each category were then summarized descriptively by Gross Motor Function Classification System level.

Results

The most commonly reported contributors to fatigue included the following: activity-related factors, general demands of life, sleep/rest, general health concerns, CP-related factors, mental health concerns, and environmental factors. The top five strategies participants reported to manage fatigue included rest or relaxation, sleeping or napping, changing or limiting their activities, being physically active, or using specific adaptations or assistive devices.

Conclusions

Results from this study suggest that there are potentially modifiable factors, including activity level and sleep, that significantly contribute to fatigue for persons with CP; these could form the basis of interventions targeted at the prevention and management of fatigue.

Implications for Rehabilitation

• As individuals with cerebral palsy who are physically active experience significant fatigue, clinicians need to address fatigue to enable these individuals to reap the health benefits of physical activity.

• Providing education and support to integrate self-management techniques, such as planning and pacing, may be an effective long-term strategy to support individuals to complete highly valued tasks.

• Interventions targeting modifiable fatigue-generating factors such as activity level, sleep, and mental health concerns are needed.

Keywords:

• Fatigue
• cerebral palsy
• management
• adolescents
• adults

Disclosure statement

Jan Willem Gorter holds the Scotiabank Chair in Child Health Research.

No potential conflict of interest was reported by the authors.

Additional information

Funding

This work was supported by a doctoral student scholarship awarded to Laura Brunton from the Canadian Institutes of Health Research.