Hastings, Richard P., Totsika, Vasiliki, Hayden, Nikita, Murray, Caitlin, Jess, Mikeda , Langley, Emma and Margetson, Jane Kerry (2020) 1000 Families Study, a UK multiwave cohort investigating the well-being of families of children with intellectual disabilities : cohort profile. BMJ Open, 10 (2). e032919. doi:10.1136/bmjopen-2019-032919

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Abstract

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.

Item Type:	Journal Article
Subjects:	H Social Sciences > HN Social history and conditions. Social problems. Social reform H Social Sciences > HQ The family. Marriage. Woman H Social Sciences > HV Social pathology. Social and public welfare R Medicine > RC Internal medicine R Medicine > RJ Pediatrics
Divisions:	Faculty of Social Sciences > Centre for Educational Development, Appraisal and Research (CEDAR)
Library of Congress Subject Headings (LCSH):	Intellectual disability, Children with mental disabilities , Parents of children with mental disabilities , Parents of children with mental disabilities -- Services for , Well-being
Journal or Publication Title:	BMJ Open
Publisher:	BMJ
ISSN:	2044-6055
Official Date:	12 February 2020
Dates:	Date Event 12 February 2020 Published 12 February 2020 Available 9 January 2020 Accepted
Volume:	10
Number:	2
Article Number:	e032919
DOI:	10.1136/bmjopen-2019-032919
Status:	Peer Reviewed
Publication Status:	Published
Access rights to Published version:	Open Access
RIOXX Funder/Project Grant:	Project/Grant ID RIOXX Funder Name Funder ID UNSPECIFIED Cerebra http://dx.doi.org/10.13039/501100002833 UNSPECIFIED [ESRC] Economic and Social Research Council http://dx.doi.org/10.13039/501100000269 UNSPECIFIED University of Warwick http://dx.doi.org/10.13039/501100000741

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