ArticleBMJ open2020
1000 Families Study, a UK multiwave cohort investigating the well-being of families of children with intellectual disabilities: cohort profile.
Article in BMJ open, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 12 papers.
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Who cites it
12 citing papers in PubMed, 26 citations in OpenAlex.
- Mother-Child Closeness Trajectories in Families of Children With Intellectual Disabilities From a UK Cohort Study.Journal of intellectual disability research : JIDR · 2026Article
- Trajectories of Mother-Child Closeness and Child Behavioural and Emotional Outcomes in Families of Children With Intellectual Disabilities.Journal of intellectual disability research : JIDR · 2026Article
- A feasibility randomised trial of remotely delivered Video Interaction Guidance for parents of children with intellectual disability referred to specialist mental health services.Pilot and feasibility studies · 2026Article
- Down Syndrome in British Maternity Care: Mothers' Experiences of Prenatal Testing and Receiving a Prenatal or Postnatal Diagnosis.Journal of applied research in intellectual disabilities : JARID · 2025Article
- Comparing Levels of Positive Mental Well-Being and Life Satisfaction Between Mothers and Fathers of Children With an Intellectual Disability.Journal of intellectual disability research : JIDR · 2025Article
- Behavioural adjustment of children with intellectual disability and their sibling is associated with their sibling relationship quality.Journal of intellectual disability research : JIDR · 2023Article
- Neuropsychiatric risk in children with intellectual disability of genetic origin: IMAGINE, a UK national cohort study.The lancet. Psychiatry · 2022Article
- Support Needs and Parent Outcomes in Arab Families of Children with Autism Living in the United Kingdom.Brain sciences · 2022Article
- Modelling triadic relationships in families of children with intellectual disability.Journal of applied research in intellectual disabilities : JARID · 2022Article
- COVID-19 impact on psychological outcomes of parents, siblings and children with intellectual disability: longitudinal before and during lockdown design.Journal of intellectual disability research : JIDR · 2021Article
- Failure to replicate a robust Down syndrome advantage for maternal well-being.Journal of intellectual disability research : JIDR · 2021Article
- Early Positive Approaches to Support (E-PAtS) for Families of Young Children With Intellectual Disability: A Feasibility Randomised Controlled Trial.Frontiers in psychiatry · 2021Article
Corrections and comments
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Authors and funding
7 authors at 1 institution in 2 countries.
Funding
No grant is acknowledged in the PubMed record.
Abstract
purposeThe 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.
participantsOver 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.
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