Caregivers' experience of sleep management in Smith-Magenis syndrome: a mixed-methods study.

ABSTRACT:

Background

Smith-Magenis syndrome (SMS) is a rare genetic syndrome associated with a unique profile of early morning waking and daytime sleepiness. Children with SMS evidence high rates of self-injury and aggression and have a preference for adult over peer attention, with strong motivation to interact with a particular caregiver. In addition, people with SMS have lower adaptive functioning skills relative to cognitive abilities and demonstrate high levels of impulsivity. Taken together, these factors may result in individuals being awake overnight requiring vigilant caregiver supervision. Despite these complexities, no study has described the strategies caregivers take to keep their children with SMS safe overnight or considered the impact of these experiences on caregivers or the

SUBMITTER: Agar G 

PROVIDER: S-EPMC8815225 | biostudies-literature | 2022 Feb

REPOSITORIES: biostudies-literature