Weekly respite emerged as the ideal provision for 49% of caregivers, although only 14% had access to this. For some individual caregivers, sleep management difficulties improved over time whereas for others no change was reported. Only 5% of caregivers reported that the sleep problems had no impact on their child, and 76% reported a moderately or extremely significant impact on themselves. ResultsĮvidence from the online survey (n = 40) revealed wide-ranging impacts of poor sleep on the person with SMS and the wider family. Interviews were transcribed verbatim and coded using thematic analysis. Semi-structured interviews were conducted with 14 caregivers in the UK to increase understanding of caregiver experiences and priorities for change in the UK context. Caregivers completed an international online survey about sleep management and related difficulties, use of interventions and access to services and support. The current study used a mixed-methods approach to consider sleep management strategies and challenges for caregivers of people with SMS at different ages. 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 wider family. Taken together, these factors may result in individuals being awake overnight requiring vigilant caregiver supervision. In addition, people with SMS have lower adaptive functioning skills relative to cognitive abilities and demonstrate high levels of impulsivity. 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. Smith–Magenis syndrome (SMS) is a rare genetic syndrome associated with a unique profile of early morning waking and daytime sleepiness.
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