Managing Fatigue: Experiences From a 6-week Course for Adults With Cerebral Palsy

Ellinor Nilsson; Séverine Hedberg Dubuc; Nazdar Ghafouri; Anne Söderlund Schaller

doi:10.1016/j.arrct.2023.100300

Managing Fatigue: Experiences From a 6-week Course for Adults With Cerebral Palsy

Arch Rehabil Res Clin Transl. 2023 Oct 2;5(4):100300. doi: 10.1016/j.arrct.2023.100300. eCollection 2023 Dec.

Authors

Ellinor Nilsson¹, Séverine Hedberg Dubuc¹, Nazdar Ghafouri², Anne Söderlund Schaller^{2

3}

Affiliations

¹ Department of Habilitation, and Department of Biomedical and Clinical Sciences, Linköping University, Motala, Sweden.
² Pain and Rehabilitation Centre, and Department of Health, Medicine and Caring Sciences, Linköping University, Linköping, Sweden.
³ Division of Nursing Science, Department of Health, Medicine and Caring Sciences, Linköping University, Linköping, Sweden.

Abstract

Objective: To explore experiences of a 6-week Fatigue Management course (FMC) in adults with cerebral palsy (CP).

Design: A qualitative study using semi-structured interviews. The study process followed the Consolidated Criteria for Reporting Qualitative Research (COREQ).

Setting: The study was conducted in southeastern Sweden in an out-patient setting.

Participants: Adults (N=8) with CP who had participated in FMC.

Interventions: Not applicable.

Main outcome measure: Qualitative content analysis of the transcribed interviews led to identification of a main category, categories, and subcategories, describing the participants' experiences of FMC.

Results: The analysis identified 2 categories: Awareness regarding fatigue, with the 2 subcategories: A better understanding, and The feeling of not being alone; and Perceive opportunities for changes, with the 3 subcategories: Understanding the need for changes, Demanding process, and Taking steps toward change. These categories were summed up in the main category describing the participants' experiences of FMC: A challenging and eye-opening course that gave deeper self-understanding and thoughts about making changes.

Conclusions: Overall, the participants described positive experiences of FMC, with increased awareness regarding fatigue and insight regarding the possibilities for change. Nevertheless, there were challenges in coping with the extensive information and with the home assignments. This study gives promising results regarding the applicability of FMC for adults with CP. However, there is a need for course modifications with more targeted and differentiated content that is manageable and does not overload the participants. The modifications should include extended time, the addition of individual support, and follow-up between sessions, to increase participants' opportunities to implement new strategies and initiate behavioral change.

Keywords: Cerebral palsy; Fatigue; Patient education; Rehabilitation; Self-management.