Background:

Parents, especially mothers, raising children with intellectual disability report more stress and mental health difficulties than do other parents. Our research group’s work shows that mothers’ psychological well-being is poorer when they have a child with intellectual disability even when you control for other important variables such as socio-economic circumstances. Additionally, existing literature has predominately focused on dyadic relationships in families of children with intellectual disabilities. Family systems are much more than these simple dyadic relationships and so family system research needs to explore relationships between more than two individuals in the family. The 1000 Families Study was designed to provide an ongoing Cohort study to examine systems-informed research questions and to facilitate longitudinal data analyses to contribute to the research evidence base.

Policy and Practice Partners:

Cerebra (https://cerebra.org.uk/) and both funders of the project and partners in this ongoing cohort study.

Co-Funding partners:

The University of Warwick co-funds a PhD studentship as a part of this project.

Aims and Objectives:

Because of the nature of this ongoing cohort study, specific research questions are not identified for each wave of data collection. However, the main aims of Wave 3 of the 1000 Families Study are as follows:

1. To explore correlates of maternal and sibling well-being over time, including: family deprivation; other child, parent, sibling and family demographic factors; other family members’ well-being; support/conflict in relationships, and the child with intellectual disability’s emotional and behaviour problems and adaptive skills.

2. To explore correlates over time of the behavioural and emotional well-being of the child with intellectual disability, including: family deprivation; other child, parent, sibling and family demographic factors; other family members’ well-being; support/conflict in relationships, the child with intellectual disability’s adaptive skills, and parenting attitudes and behaviours.

3. To explore cross-sectionally at Wave 3 associations between support and conflict from grandparents and maternal and sibling psychological adjustment.

Methods:

“The 1,000 Families Study” focuses on families of children and young people with intellectual disability. A UK sample of 1,184 families living with a child with intellectual disability of school age (4 years -15 years 11 months of age in 2015-17) was achieved at Wave 1 of the study. The data were collected through an online survey and a telephone interview. Initial data collection took place between November 2015 and January 2017, with repeat data collection in 2019-21 (Wave 2) for those children who were still under 16 years of age.

Main Results:

A Cohort Profile for the study has been published [https://bmjopen.bmj.com/content/10/2/e032919]

Recruitment for Wave 3 due to begin in autumn 2021.

Publication:

In addition to the Cohort Profile, the following papers have been published from Waves 1 and 2 of the study:

https://onlinelibrary.wiley.com/doi/full/10.1111/jir.12818

https://onlinelibrary.wiley.com/doi/full/10.1111/jir.12808

https://meridian.allenpress.com/ajidd/article-abstract/126/3/187/464641/Family-Relationships-and-Their-Associations-With?redirectedFrom=fulltext

https://www.cambridge.org/core/journals/the-british-journal-of-psychiatry/article/abs/clinical-utility-of-the-parentreported-strengths-and-difficulties-questionnaire-as-a-screen-for-emotional-and-behavioural-difficulties-in-children-and-adolescents-with-intellectual-disability/F338E561A8F46B9AF85C6D5848917595

https://www.sciencedirect.com/science/article/pii/S0891422220300925