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Contact the study team using the details below to take part. If there are no contact details below please ask your doctor in the first instance.
Behavioural syndromes associated with physiological disturbances and physical factorsDisorders of psychological development
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Children with intellectual disability (including intellectual disability of a heterogeneous origin, or associated with autism or a genetic syndrome) often experience poor sleep which can negatively impact them and their caregivers, particularly when children show unsafe behaviours (e.g. food seeking or hurting themselves) overnight. Some caregivers have tried enclosed bed systems, sometimes called 'safe sleeping spaces', which typically consist of a fabric mesh tent-like structure attached over the child’s existing bed, to keep their children safe. However, these have not yet been studied using direct measures of sleep and behaviour. This study will examine whether enclosed bed systems help children aged 3-11 years with intellectual disability and their caregivers to sleep better. Families will be recruited to this study via their NHS clinician, if other sleep interventions have been unsuccessful. Children and at least one (up to two) of their caregivers will wear actiwatch devices to measure their sleep patterns via movement. These assessments will take place for 10 days before and 10 days after the enclosed bed is installed. The study will also explore whether the use of enclosed beds can improve children’s safety overnight and caregivers’ wellbeing, using diary and questionnaire measures. We will also ask health and social care professionals for their perspectives on the use of enclosed beds for individuals with intellectual disability, via an online survey and focus group discussions. Caregivers will also be invited to focus groups to share their experiences of using the enclosed beds. We will use these findings to produce best practice guidelines to help professionals know when to recommend the enclosed beds, and how to evaluate them. This project is funded by the Baily Thomas Charitable Fund.
Start dates may differ between countries and research sites. The research team are responsible for keeping the information up-to-date.
The recruitment start and end dates are as follows:
Observational type: Cohort study;
You can take part if:
You may not be able to take part if:
For WP1, we will not recruit children who: • are outside of the age 3-11 years • live outside of the UK • do not experience significant sleep disturbance • have not trialled sleep hygiene and/or medication interventions • experience sleep difficulties that have a putative biological cause (e.g. restless legs syndrome, obstructive sleep apnea) • do not have a diagnosis of intellectual disability, autism and/or genetic syndrome • are not on the pathway to receive an enclosed bed as per the local service typical clinical practice For WP1, we will not recruit caregivers who: • are outside of the age 18-80 years • do not live in the UK • are not able to provide informed consent, complete consent forms, questionnaires, sleep assessment and an interview in English • do not care for a child who meets the above inclusion criteria For WP2, we will not recruit professionals who: • are outside of the age 18-80 years • do not work in the UK • do not identify as health and social care professionals (e.g. paediatric sleep consultants, clinical psychologists, psychiatrists, social workers) • do not have professional experience working with individuals with intellectual disability, autism and/or genetic syndromes For WP2, we will recruit caregivers who: • are outside of the age 18-80 years • do not live in the UK • do not care for an individual with intellectual disability, autism and/or genetic syndrome • have not used an enclosed bed in the last two years for the individual they care for
Below are the locations for where you can take part in the trial. Please note that not all sites may be open.
The study is sponsored by Aston University and funded by THE BAILY THOMAS CHARITABLE FUND .
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for Trial ID: CPMS 60466
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