J Sleep Med.  2023 Apr;20(1):11-18. 10.13078/jsm.220026.

Respiratory Health, Sleep Dysfunction, and Mental Health in Children and Adolescents With a Neuromuscular Disorder: A Descriptive Qualitative Study

• Huston M
• Withers AL
• Lam J
• Wilson A
• Downs J

• KMID: 2542089
• DOI: http://doi.org/10.13078/jsm.220026

Abstract

Objectives
To explore how respiratory health and sleep problems affect mental health in children and adolescents with neuromuscular disorders (NMDs).
Methods
A qualitative descriptive study was carried out with content analysis of in-depth interviews conducted with children with NMDs and their parents. Data were collected during semi-structured interviews with children with NMDs and their parents. A total of 14 families were recruited (17 parents and 7 children and adolescents with NMD aged 5–17 years). Each interview was conducted with 1–3 family member(s).
Results
Engagement in community activities, meaningful relationships, feeling well, and achieving independence each contributed positively to children’s mental health. Additional challenges to mental health during periods of poor respiratory and/or sleep health included: 1) challenges to behavioral regulation, 2) changes to mood, and 3) challenges to thinking. Parents and children reported nurturing and coping self-management strategies when their physical and mental health were dually challenged in addition to medical management strategies such as non-invasive ventilation (NIV).
Conclusions
This study supports the notion that changes in mental health may indicate poor physical health in children with NMDs. Treating respiratory and sleep problems, such as by early NIV implementation, may improve the mental health of children with NMDs and thus support their overall wellbeing and health outcomes.