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

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.