The lived experiences and significant challenges on lifestyle and weight management facing paediatric patients with Demyelinating Syndromes

Consterdine, A ORCID: 0000-0002-8564-1960, Slessor, K, Collett, J ORCID: 0000-0003-4138-2589, Duda, JL ORCID: 0000-0002-0068-257X and Dawes, H ORCID: 0000-0002-2933-5213 (2025) The lived experiences and significant challenges on lifestyle and weight management facing paediatric patients with Demyelinating Syndromes. Disability and Rehabilitation. pp. 1-22. ISSN 0963-8288

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Abstract

Purpose
To explore the perceptions and experiences of children and young people with Demyelinating Syndromes (DS) in living with the condition and maintaining a healthy lifestyle.

Materials and methods
16 young people with DS took part in semi-structured interviews investigating their perceptions of weight gain, exercise, diet, health, and lifestyle. Interviews were conducted virtually, audio-recorded, and transcribed. Inductive thematic analysis was employed for data analysis. Rigour and credibility were established through detailed immersion, reflexivity and inter-researcher triangulation.

Findings
Five overarching themes were identified: 1) the influence of the diagnosis and condition on the young person’s wellbeing, 2) the implication of the treatment, access to services and effects of steroids, 3) the interplay between Physical Activity (PA), diet, lifestyle and DS, 4) challenges to identity and selfhood, and 5) the impact of family and peer support on how the young person navigates their condition.

Conclusions
Diagnosis and treatment appeared to produce a multitude of intersecting effects on the young people interviewed with drastic implications for PA and lifestyle. Those who maintained or improved their PA levels were able to manage their disease course more effectively, despite a lack of information or guidance on PA, nutrition or lifestyle.

Item Type:	Article
Uncontrolled Keywords:	Demyelinating Syndromes; NMOSD; multiple sclerosis; paediatrics; physical activity; weight; 4203 Health Services and Systems; 32 Biomedical and Clinical Sciences; 42 Health Sciences; Behavioral and Social Science; Physical Activity; Prevention; Nutrition; Obesity; 7.1 Individual care needs; Generic health relevance; 11 Medical and Health Sciences; Rehabilitation; 32 Biomedical and clinical sciences; 42 Health sciences; 44 Human society
Subjects:	R Medicine > RC Internal medicine > RC1200 Sports Medicine
Divisions:	Sport and Exercise Sciences
Publisher:	Taylor & Francis
Date of acceptance:	22 August 2025
Date of first compliant Open Access:	2 October 2025
Date Deposited:	02 Oct 2025 08:54
Last Modified:	02 Oct 2025 09:00
DOI or ID number:	10.1080/09638288.2025.2552871
URI:	https://researchonline.ljmu.ac.uk/id/eprint/27240

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