Highlights
- •Fatigue is a highly disruptive symptom for caMS and parents.
- •Parents and caMS experience fatigue as an uncertain, uncontrollable symptom.
- •Fatigue evokes concern in parents for caMS' well-being and future.
- •CaMS highlight the implications of disclosure or non-disclosure of fatigue.
- •Implementing fatigue management strategies in clinical practice is imperative.
Abstract
Aim
Fatigue is one of the most common and disabling symptoms of paediatric MS, associated
with depressed mood, impaired school performance and lower quality of life. Fatigue
in children and adolescents with MS (caMS) is poorly understood, and effective treatments
for fatigue are currently lacking. No qualitative studies have previously examined
fatigue in caMS. Thus, the objectives were (a) to explore experiences of fatigue in
paediatric MS and (b) to gain insight into how caMS and their parents respond to and
manage fatigue.
Methods
In-depth semi-structured qualitative interviews were conducted with 15 caMS and 13
of their parents, either face-to-face or via telephone. Inductive thematic analysis
was primarily used, incorporating elements of grounded theory.
Results
Five key themes were identified in the data. Participants described mentally and physically
exhausting fatigue, which they perceived as uncertain and uncontrollable. Parents
expressed concern about caMS' well-being and future because of fatigue, whilst caMS
discussed the implications of disclosure or non-disclosure of fatigue to peers and
teachers. An additional overarching theme addressed participants' emotional responses
to fatigue. Participants stressed the need for better guidance on fatigue management.
Interpretation
This study provides a unique insight into the experience and management of fatigue
in paediatric MS from the perspective of both caMS and parents. Some findings echoed
experiences of fatigue in other populations, whilst new factors in paediatric MS also
emerged. Fatigue management interventions involving caMS, parents and teachers should
be developed and implemented in clinical practice.
Keywords
Abbreviations:
caMS (children and adolescents with MS), CFS (Chronic Fatigue Syndrome), MS (multiple sclerosis)To read this article in full you will need to make a payment
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Article Info
Publication History
Published online: July 04, 2016
Accepted:
June 19,
2016
Received in revised form:
June 16,
2016
Received:
March 9,
2016
Identification
Copyright
© 2016 European Paediatric Neurology Society. Published by Elsevier Ltd. All rights reserved.

