Sleep in children with spinal muscular atrophy and their caregivers: Exploring sleep problems and the need for care.
Kids with SMA and their caregivers both lose sleep—screen the whole family.
01Research in Context
What this study did
van Rijssen et al. (2026) asked parents of kids with spinal muscular atrophy about sleep. They compared answers to parents of typically developing kids.
They used actigraphy watches and short surveys. The study looked at both the child and the caregiver.
What they found
Kids with SMA woke more, snored more, and felt tired during the day. Their caregivers also slept poorly and felt sleep-deprived.
The problems were big enough to show up on the wrist-watch data, not just parent memory.
How this fits with other research
Bulut et al. (2024) saw the same caregiver sleep loss in SMA families. Both papers say screen the caregiver, not just the child.
Wong et al. (2023) and Lovell et al. (2021) found the same pattern in autism families. Poor caregiver sleep predicts next-day mood and health.
Trickett et al. (2017) and Meier et al. (2012) showed Angelman parents want behavioral sleep help. Margot adds SMA to the list of rare disorders that need family-wide sleep plans.
Why it matters
If you serve a child with SMA, add two quick sleep questions to your intake: 'How many times does your child wake you at night?' and 'How rested do you feel?' If either answer is poor, refer the caregiver for sleep support. Treating caregiver sleep can boost their daytime mood and the quality of care they give the child.
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Add two caregiver sleep questions to your intake form and flag for referral if score is low.
02At a glance
03Original abstract
Sleep-disordered breathing in children with spinal muscular atrophy (SMA) is well recognized, yet little is known about everyday, non-respiratory sleep problems and their impact on caregivers. The purpose of this study is to describe the caregiver-reported frequency and type of sleep problems in children with spinal muscular atrophy (SMA) and to evaluate the sleep satisfaction of their child and their own sleep. Furthermore, we assessed the relationship between child and caregiver sleep. Finally, we compared sleep outcomes of children with SMA to that of typically developing (TD) children and their caregivers. Fifty-one children with SMA (age range: 0-16), 287 TD children (age range: 0-16) and their caregivers participated in this cross-sectional, exploratory observational questionnaire study. Night-time waking, snoring, pain or discomfort and daytime fatigue were more common in children with SMA. Caregivers of children with SMA were less satisfied about their child's and own sleep, and more often reported feeling sleep deprived. We recommend regular assessment of sleep in children with SMA and their families in pediatric healthcare practice.
Research in developmental disabilities, 2026 · doi:10.1016/j.ridd.2026.105238