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

Overview

Journal Arch Rehabil Res Clin Transl

Date 2024 Jan 1

PMID 38163030

Authors

Ellinor Nilsson

Severine Hedberg Dubuc

Nazdar Ghafouri

Anne Soderlund Schaller

Affiliations

Soon will be listed here.

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.

References

Kim S, Xu Y, Dore K, Gewurtz R, Lariviere N, Letts L . Fatigue self-management led by occupational therapists and/or physiotherapists for chronic conditions: A systematic review and meta-analysis. Chronic Illn. 2021; 18(3):441-457. PMC: 9397391. DOI: 10.1177/17423953211039783. View

Mathiowetz V, Finlayson M, Matuska K, Chen H, Luo P . Randomized controlled trial of an energy conservation course for persons with multiple sclerosis. Mult Scler. 2005; 11(5):592-601. DOI: 10.1191/1352458505ms1198oa. View

McPhee P, Brunton L, Timmons B, Bentley T, Gorter J . Fatigue and its relationship with physical activity, age, and body composition in adults with cerebral palsy. Dev Med Child Neurol. 2016; 59(4):367-373. DOI: 10.1111/dmcn.13306. View

van Gorp M, Hilberink S, Noten S, Benner J, Stam H, van der Slot W . Epidemiology of Cerebral Palsy in Adulthood: A Systematic Review and Meta-analysis of the Most Frequently Studied Outcomes. Arch Phys Med Rehabil. 2020; 101(6):1041-1052. DOI: 10.1016/j.apmr.2020.01.009. View

Vogtle L, Malone L, Azuero A . Outcomes of an exercise program for pain and fatigue management in adults with cerebral palsy. Disabil Rehabil. 2013; 36(10):818-25. DOI: 10.3109/09638288.2013.821181. View

Dutia I, Eres R, Sawyer S, Pennacchia J, Johnston L, Cleary S . Fatigue experienced by people with cerebral palsy: a systematic review of assessment tools and decision tree. Disabil Rehabil. 2023; 46(9):1751-1759. DOI: 10.1080/09638288.2023.2205175. View

Stadskleiv K . Cognitive functioning in children with cerebral palsy. Dev Med Child Neurol. 2020; 62(3):283-289. DOI: 10.1111/dmcn.14463. View

Brunton L . Descriptive Report of the Impact of Fatigue and Current Management Strategies in Cerebral Palsy. Pediatr Phys Ther. 2018; 30(2):135-141. DOI: 10.1097/PEP.0000000000000490. View

Mattsson M, Moller B, Lundberg I, Gard G, Bostrom C . Reliability and validity of the Fatigue Severity Scale in Swedish for patients with systemic lupus erythematosus. Scand J Rheumatol. 2008; 37(4):269-77. DOI: 10.1080/03009740801914868. View

10.

van der Slot W, Nieuwenhuijsen C, van den Berg-Emons R, Bergen M, Hilberink S, Stam H . Chronic pain, fatigue, and depressive symptoms in adults with spastic bilateral cerebral palsy. Dev Med Child Neurol. 2012; 54(9):836-42. DOI: 10.1111/j.1469-8749.2012.04371.x. View

11.

Lundh S, Nasic S, Riad J . Fatigue, quality of life and walking ability in adults with cerebral palsy. Gait Posture. 2017; 61:1-6. DOI: 10.1016/j.gaitpost.2017.12.017. View

12.

Brunton L, McPhee P, Gorter J . Self-reported factors contributing to fatigue and its management in adolescents and adults with cerebral palsy. Disabil Rehabil. 2019; 43(7):929-935. DOI: 10.1080/09638288.2019.1647294. View

13.

Elo S, Kyngas H . The qualitative content analysis process. J Adv Nurs. 2008; 62(1):107-15. DOI: 10.1111/j.1365-2648.2007.04569.x. View

14.

Slaman J, van den Berg-Emons H, van Meeteren J, Twisk J, van Markus F, Stam H . A lifestyle intervention improves fatigue, mental health and social support among adolescents and young adults with cerebral palsy: focus on mediating effects. Clin Rehabil. 2014; 29(7):717-27. DOI: 10.1177/0269215514555136. View

15.

Russchen H, Slaman J, Stam H, Markus-Doornbosch F, van den Berg-Emons R, Roebroeck M . Focus on fatigue amongst young adults with spastic cerebral palsy. J Neuroeng Rehabil. 2014; 11:161. PMC: 4274699. DOI: 10.1186/1743-0003-11-161. View

16.

Benner J, Hilberink S, Veenis T, Stam H, van der Slot W, Roebroeck M . Long-Term Deterioration of Perceived Health and Functioning in Adults With Cerebral Palsy. Arch Phys Med Rehabil. 2017; 98(11):2196-2205.e1. DOI: 10.1016/j.apmr.2017.03.013. View

17.

Van Heest K, Mogush A, Mathiowetz V . Effects of a One-to-One Fatigue Management Course for People With Chronic Conditions and Fatigue. Am J Occup Ther. 2017; 71(4):7104100020p1-7104100020p9. DOI: 10.5014/ajot.2017.023440. View

18.

Sauter C, Zebenholzer K, Hisakawa J, Zeitlhofer J, Vass K . A longitudinal study on effects of a six-week course for energy conservation for multiple sclerosis patients. Mult Scler. 2008; 14(4):500-5. DOI: 10.1177/1352458507084649. View

19.

Krupp L, Larocca N, Steinberg A . The fatigue severity scale. Application to patients with multiple sclerosis and systemic lupus erythematosus. Arch Neurol. 1989; 46(10):1121-3. DOI: 10.1001/archneur.1989.00520460115022. View

20.

Hersche R, Roser K, Weise A, Michel G, Barbero M . Fatigue self-management education in persons with disease-related fatigue: A comprehensive review of the effectiveness on fatigue and quality of life. Patient Educ Couns. 2021; 105(6):1362-1378. DOI: 10.1016/j.pec.2021.09.016. View