Purpose The 1000 Families Study is a large, UK-based, cohort of families of children with intellectual disability (ID). The main use of the cohort data will be to describe and explore correlates of the well-being of families of children with ID, including parents and siblings, using cross-sectional and (eventually) longitudinal analyses. The present cohort profile intends to describe the achieved cohort.
Participants Over 1000 families of UK children with ID aged between 4 and 15 years 11 months (total n=1184) have been recruited. The mean age of the cohort was 9.01 years old. The cohort includes more boys (61.8%) than girls (27.0%; missing 11.1%). Parents reported that 45.5% (n=539) of the children have autism. Most respondents were a female primary caregiver (84.9%), and 78.0% were the biological mother of the cohort child with ID. The largest ethnic group for primary caregivers was White British (78.5%), over half were married and living with their partner (53.3%) and 39.3% were educated to degree level.
Findings to date Data were collected on family, parental and child well-being, as well as demographic information. Wave 1 data collection took place between November 2015 and January 2017, primarily through online questionnaires. Telephone interviews were also completed by 644 primary caregivers.
Future plans Wave 2 data collection is ongoing and the research team will continue following up these families in subsequent waves, subject to funding availability. Results will be used to inform policy and practice on family and child well-being in families of children with ID. As this cohort profile aims to describe the cohort, future publications will explore relevant research questions and report key findings related to family well-being.
- family research
- intellectual disability
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Contributors RPH and VT conceptualised and codesigned the study, wrote the study protocol, contributed to the drafting of the manuscript for publication, reviewed and revised the manuscript and read and approved the final manuscript. NKH and CAM contributed to the design of the study, contributed to the drafting of the manuscript for publication, reviewed and revised the manuscript, and read and approved the final manuscript. MJ, EL and JKM contributed to the design of the study, contributed to the original protocol and read and approved the final manuscript.
Funding The authors acknowledge the funding support of Cerebra, UK, the Economic and Social Research Council Warwick Doctoral Training Centre, and the University of Warwick.
Competing interests None declared.
Patient consent for publication Not required.
Ethics approval Full ethical approval was granted for this study from the UK National Health Service (NHS) West Midlands—South Birmingham Research Ethics Committee: REC reference number: 15/WM/0267 (11 September 2015). An amendment was granted to extend the age range (7 March 2017). An amendment was granted for changes made to wave 2 (8 February 2018) and the ethics committee was informed of further minor changes made to the documents for wave 2 (27 February 2018). Sponsor approval was also obtained from the University of Warwick.
Provenance and peer review Not commissioned; externally peer reviewed.
Data availability statement No data are available. Data from this study are not available for sharing due to ethical approval requirements. Researchers interested in collaboration should contact the corresponding author with their expression of interest.
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