title: "It feels like wearing a giant sandbag." Adolescent and parent perceptions of fatigue in paediatric multiple sclerosis.
abstract: OBJECTIVE
  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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: Health Psychology Section, Institute of Psychiatry, Psychology and Neuroscience, King's College London, UK.
authors.forename: Susan
authors.initials: S
authors.lastname: Carroll
authors.affiliation: Department of Psychological Medicine, Institute of Psychiatry, Psychology and Neuroscience, King's College London, UK.
authors.forename: Trudie
authors.initials: T
authors.lastname: Chalder
authors.affiliation: Department of Neurology, Great Ormond Street Hospital for Children, London, UK; UCL, Institute of Child Health, Guildford Street, London, UK.
authors.forename: Cheryl
authors.initials: C
authors.lastname: Hemingway
authors.affiliation: Department of Psychological Medicine, Great Ormond Street Hospital for Children, London, UK; UCL, Institute of Child Health, Guildford Street, London, UK.
authors.forename: Isobel
authors.initials: I
authors.lastname: Heyman
authors.affiliation: Health Psychology Section, Institute of Psychiatry, Psychology and Neuroscience, King's College London, UK. Electronic address: rona.moss-morris@kcl.ac.uk.
authors.forename: Rona
authors.initials: R
authors.lastname: Moss-Morris
mesh_terms: D000203:Activities of Daily Living; D000293:Adolescent; D000328:Adult; D002648:Child; D004644:Emotions; D005221:Fatigue / Q000209:etiology / Q000523:psychology* / Q000628:therapy; D005260:Female; D006801:Humans; D007406:Interview, Psychological; D008297:Male; D008875:Middle Aged; D009103:Multiple Sclerosis / Q000150:complications / Q000523:psychology* / Q000628:therapy; D010290:Parents; D011788:Quality of Life; D012649:Self Concept
keywords: Adolescence; Fatigue; Multiple Sclerosis; Paediatrics; Qualitative