We are delighted to announce that the first of two research articles for the Safe Sleeping project, commissioned by the SMS Foundation, has been published by the Orphanet Journal of Rare Diseases.
The project aims to gain a better understanding of the predicaments faced by families and professionals around sleep in SMS. The outcome expected from this project is the publication of clear, supported guidance to solutions and approaches for managing sleep environments that can be used by families and professionals with confidence.
It is hoped that with clear guidance families will have the support to manage sleep patterns in an efficient way, enabling them to select appropriate solutions including facilities and equipment whilst maximising child safety and well-being.
The study used a mixed-methods approach to explore caregiver experiences of sleep safety and management through an online survey and face-to-face interviews. The results of the research study clearly indicate that caregivers experience substantial difficulties with managing the sleep of family members with SMS.
Some of the caregiver findings of this study included:
- Poor sleep was associated with daytime fatigue and challenging behaviours
- Leaving children alone during the night for strictly-timed intervals (sometimes referred to as graduated extinction) is not feasible, or ethical, due to the risk of individuals self-harming
- Sleep hygiene principles, and strategies that avoid napping during the day have been helpful but not a complete solution
- Medications such as melatonin and acebutolol were commonly used to manage and regulate sleep, with paediatric prolonged release melatonin being the UK recommendation where sleep hygiene strategies have been insufficient
- Safety is a huge concern for many parents with multiple strategies that include taking turns with a partner to monitor sleep, enclosed beds, and restricting access to other rooms
- An increase in poor health including pain from constipation and ear infections was noted as a possible effects of sleep deprivation
- Siblings often experience sleep disturbance as a result of their SMS sibling’s poor sleep, although some have learned to adapt and sleep better as a result
- Some families noted relationship difficulties
- Improvements to sleep as children got older were reported by some families
- Regular respite was described as being invaluable for managing the poor sleep of individuals with SMS. However finding an appropriate carer for the needs of an individual with SMS has been difficult with a ‘postcode lottery’ for respite provisions in the UK
The research study also revealed that professionals are currently supplying parents with standardised advice around insomnia and not taking into account the complexity of the syndrome. The study concludes that the concerns reported by caregivers must now be addressed by services and professionals working with people with SMS, and that further research beyond the standard sleep hygiene recommendations is required.
The Caregivers’ experience of sleep management in Smith–Magenis syndrome article was co-authored by Georgie Agar and Stacey Bissell of the Cerebra Network and the University of Birmingham, School of Psychology. The Safe Sleeping project was co-led and funded by The Smith-Magenis Syndrome Foundation UK, with contributions to the study by CEO Nigel Over.
The SMS Foundation UK would like to thank and congratulate both Georgie and Stacey for all their hard work coordinating and writing this important piece of research.
The Caregivers’ experience of sleep management in Smith-Magenis syndrome study is open access and can be read on the Orphanet Journal of Rare Diseases website, please click the link below: