1000 Families Study, a UK multiwave cohort investigating the well-being of families of children with intellectual disabilities: cohort profile

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 dateData 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 plansWave 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.

COVID‐19 impact on psychological outcomes of parents, siblings and children with intellectual disability: longitudinal before and during lockdown design

“…We used data from an ongoing UK study of families of children with ID (refer to the detailed description of the study methods, sample and measures in a cohort profile, known as the 1000 Families Study (Hastings et al 2020). Data for Wave 2 of this study of over 1000 families of children with ID were being gathered via an online and paper survey when COVID‐19 restrictions began in the United Kingdom in March 2020.…”

“…Data were available on both positive and negative aspects of parents' general well‐being, and well‐being related to the care of their child with ID; and the rationale for and full description of these measures can be found in the study cohort profile, known as the 1000 Families Study (Hastings et al 2020). It is important to note that the measures were not chosen for a study of the impact of the COVID‐19 pandemic, but they do offer a broad perspective on different family members' psychological functioning.…”

Clinical utility of the parent-reported Strengths and Difficulties Questionnaire as a screen for emotional and behavioural difficulties in children and adolescents with intellectual disability

“…Participants were from the first wave of the Cerebra 1000 Families study, a UK cohort of families of children with intellectual disability. 9 The National Health Service West Midlands–South Birmingham Research Ethics Committee granted ethical approval. Written informed consent was obtained from all participants.…”

Failure to replicate a robust Down syndrome advantage for maternal well‐being

“…Table 1 outlines participant demographic data by participant group. Participants in this study were a subsample of a larger dataset of participants who took part in the telephone survey component of the 1000 Families Study (Hastings et al 2020), a large cohort study of families with a child with ID in the UK (N = 1184). The 1000 Families Study did not include a question about participants' (i.e.…”