Susan Carroll1, Trudie Chalder2, Cheryl Hemingway3, Isobel Heyman4, Rona Moss-Morris5. 1. Health Psychology Section, Institute of Psychiatry, Psychology and Neuroscience, King's College London, UK. 2. Department of Psychological Medicine, Institute of Psychiatry, Psychology and Neuroscience, King's College London, UK. 3. Department of Neurology, Great Ormond Street Hospital for Children, London, UK; UCL, Institute of Child Health, Guildford Street, London, UK. 4. Department of Psychological Medicine, Great Ormond Street Hospital for Children, London, UK; UCL, Institute of Child Health, Guildford Street, London, UK. 5. Health Psychology Section, Institute of Psychiatry, Psychology and Neuroscience, King's College London, UK. Electronic address: rona.moss-morris@kcl.ac.uk.
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.
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.
Authors: Shashank Ghai; Elisabeth Kasilingam; Roberta Lanzillo; Masa Malenica; Vincent van Pesch; Niamh Caitlin Burke; Antonio Carotenuto; Rebecca Maguire Journal: Children (Basel) Date: 2021-05-25