Sleep quality and daytime sleepiness amongst family caregivers of children with Spinal Muscular Atrophy.
Parents of kids with SMA are sleeping badly—check and support their sleep to protect the whole care team.
01Research in Context
What this study did
Bulut et al. (2024) asked parents of children with spinal muscular atrophy (SMA) about their own sleep.
They used sleep-quality surveys and a daytime-sleepiness scale.
The team compared these parents to caregivers of healthy kids.
What they found
SMA caregivers said their sleep was much worse than the comparison group.
Surprisingly, both groups felt equally sleepy during the day.
Sleep problems were the same no matter which SMA type the child had.
How this fits with other research
Lovell et al. (2021) saw the same poor sleep in autism caregivers, showing this pattern crosses diagnoses.
van Rijssen et al. (2026) looked deeper and found the kids with SMA also wake a lot at night, giving a reason for the caregiver unrest.
Wong et al. (2023) used wrist trackers in FOXG1 syndrome and proved caregiver sleep loss is real, not just survey talk.
Why it matters
If you serve a child with SMA, add a two-question sleep screen for the parents at every visit. Poor caregiver sleep can cut the quality of therapy you deliver. A simple referral for sleep hygiene or respite may boost both parent health and child progress.
Want CEUs on This Topic?
The ABA Clubhouse has 60+ free CEUs — live every Wednesday. Ethics, supervision & clinical topics.
Join Free →Hand the caregiver a sleep-quality survey while you start session; score it before you leave and note any red flags for follow-up.
02At a glance
03Original abstract
BACKGROUND: While there are limited studies focusing on sleep quality of family caregivers of children with Spinal Muscular Atrophy (SMA), there are no studies on daytime sleepiness in SMA. AIMS: This study aimed a) to compare the sleep quality and daytime sleepiness between caregivers of children with SMA and those of healthy peers and b) to investigate the sleep quality and daytime sleepiness of family caregivers of children with different types of SMA. METHODS AND PROCEDURES: This study included 30 family caregivers of children with SMA (SMA Type 1:12, SMA Type 2:10, and SMA Type 3:8) and 31 family caregivers of healthy peers. Sleep quality and daytime sleepiness of family caregivers were evaluated using the Pittsburg Sleep Quality Index (PSQI) and the Epworth Sleepiness Scale (EPS), consecutively. OUTCOMES AND RESULTS: Demographic characteristics of children with SMA and healthy peers were similar (p > 0.05). The mean ages of family caregivers of children with SMA and healthy peers were 36.07 ± 5.84 and 35.26 ± 5.02 years, respectively (p = 0.6). The PSQI scores of family caregivers of children with SMA (7.50 ± 3.90 points) were lower than those of healthy peers (4.09 ± 1.97 points) (p < 0.001). There was no difference in PSQI scores between SMA types (p = 0.8). Also, no difference was found between SMA types and between SMA and healthy peers in terms of EPS (p > 0.05). CONCLUSIONS AND IMPLICATIONS: Family caregivers of children with SMA had poor sleep quality but similar daytime sleepiness compared with those of healthy peers. Among SMA types, family caregivers had similar sleep quality and daytime sleepiness. It was demonstrated that the sleep quality of family caregivers should be taken into consideration in the disease management of SMA.
Research in developmental disabilities, 2024 · doi:10.1016/j.ridd.2024.104811