The 1,000 Families Study

• Research type

  Research Study

• Full title

  The 1,000 families study: Well-being in families of children with intellectual disability

• IRAS ID

  169882

• Contact name

  Richard Hastings

• Contact email

  r.hastings@warwick.ac.uk

• Sponsor organisation

  University of Warwick

• Clinicaltrials.gov Identifier

  REGO-2015-1604, Sponsor reference number

• Duration of Study in the UK

  4 years, 3 months, 31 days

• Research summary

  What are the experiences of UK families with a child with an intellectual disability?

  This large-scale longitudinal study investigates the impact on families when they have a child with an intellectual disability. The research is funded by the research charity Cerebra and will recruit 1000 or more families in the UK with a child with an intellectual disability aged 4-11 years. Families will be recruited in a range of ways including social media, communication with special schools, and support from third sector organisations. Families will be asked to participate in Wave 1 of the study (2015-2017) and indicate whether they would also like to be contacted in two years time for Wave 2 (2017-2019).
  Wave 1 of the study asks primary and secondary caregivers within each family to report on many aspects of their lives including their own health, well-being and life satisfaction; their children’s behaviour and relationships, and general family functioning. The majority of this information will be collected by a self-report online survey, with additional information about the child with the intellectual disability’s behaviour collected via a telephone interview (with the primary caregiver).

  There is no existing study of this type and size in the UK and so this research will make a significant leap forward in intellectual disability family research and has the potential to lead to decades of high quality family research. Crucially, the outcomes of this research will be important for supporting families. Input from the research charity Cerebra, means that the findings will be made accessible for families and practitioners and will be regularly disseminated at different time points throughout the study.

• REC name

  West Midlands - South Birmingham Research Ethics Committee

• REC reference

  15/WM/0267

• Date of REC Opinion

  11 Sep 2015

• REC opinion

  Further Information Favourable Opinion