“It feels like wearing a giant sandbag.” Understanding fatigue in paediatric multiple sclerosis

Abstract

Background: Fatigue is one of the most common and disabling symptoms of multiple sclerosis (MS), associated with depressed mood, impaired school performance and lower quality of life in children and adolescents with MS (caMS). Fatigue in caMS is poorly understood, and effective treatments for fatigue are currently lacking. This is the first qualitative study to explore experiences of fatigue in paediatric MS. The aim was 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 parents, either face-to-face or via telephone. Inductive thematic analysis was primarily used, incorporating elements of grounded theory. Findings: Five key themes were identified in the data. The Lived Experience of Fatigue & Impact on Daily Activities, Uncertainty and Uncontrollability of Fatigue and Balancing Activities were themes common to caMS and parents, whilst parents uniquely expressed Concern about children’s well-being and future, and caMS solely discussed their experiences of Social Support and Disclosure. An additional overarching theme addressed participants’ Emotional Responses to Fatigue & its Impact. Discussion: This study provides a unique insight into the experience and management of fatigue in paediatric MS from the perspective of both caMS and parents. Although some findings echoed experiences of fatigue in other populations, such as perceiving fatigue to be uncontrollable, this study also highlighted new factors in paediatric MS, such as issues about disclosure. These factors should be addressed in clinical practice by developing interventions for fatigue involving caMS, parents and teachers.