The REST-ID Study

• Research type

  Research Study

• Full title

  Reporting Experiences of Sleep in Teens with Intellectual Disabilities (The REST-ID Study)

• IRAS ID

  354302

• Contact name

  Georgie Agar

• Contact email

  g.agar@aston.ac.uk

• Sponsor organisation

  Aston University

• Duration of Study in the UK

  2 years, 2 months, 30 days

• Research summary

  There is a high prevalence of sleep problems in adolescents with intellectual disabilities (ID), with sleep difficulties being linked to various poor health outcomes, including difficulties with memory, attention, learning, and verbal abilities. However, there are methodological issues in current strategies to measure sleep in adolescents with ID, with an over-reliance on caregiver reports. Caregivers have been shown to both over- and under-estimate sleep problems in their children. This may be due to caregivers' own perceived levels of tiredness (leading to over-estimation) or due to sleep problems that do not disturb the wider family, such as delayed sleep-onset (leading to under-estimation). As a result, caregivers may become less appropriate informants once their children reach adolescence.
  Whilst self-report sleep questionnaires are available for neurotypical populations to assess sleep problems, they are likely to be inappropriate for those with ID and have not been validated in this population. Therefore, this study will design a new self-report questionnaire and sleep diary for adolescents aged 12-18 years.
  Adolescents with ID and their caregiver will be recruited via charities, schools, relevant support groups, and the social media. Adolescents with ID will complete tasks to explore their experience of falling and staying asleep, which will directly inform the items in the new sleep questionnaire. Adolescents with ID and their caregivers will then complete the novel questionnaire as well as existing validated questionnaires of mood and well-being to investigate correlates of poor sleep. Adolescents will have the option of completing overnight sleep assessments for objective validation of the questionnaire. We will also ask healthcare professionals for their perspectives on identifying and treating sleep problems in adolescents with ID. The feasibility of the new sleep measures will be determined by focus groups with healthcare professionals. This project is being funded by Aston University.
  

• REC name

  South Central - Berkshire Research Ethics Committee

• REC reference

  25/SC/0134

• Date of REC Opinion

  9 Jul 2025

• REC opinion

  Further Information Favourable Opinion