The Family Research Group at the University of Warwick, in collaboration with Cerebra, is exploring the experiences of families who live with a child with a learning disability in the UK through the Cerebra 1000 Families Study. As far as we know, this is the largest ever longitudinal study of families of children with learning disability in the UK, and we would like to thank all families who have taken part in the 1000 Families study so far.
This research will further our understanding of what it is like to raise a child with a learning disability in the UK and will help shape future support for families and children.
A UK sample of 1,184 families living with a child with learning disability of school age (4 years – 15 years 11 months) was achieved at Wave 1 of the study. Data were collected through an online survey and telephone interview, with initial data collection taking place between November 2015 and January 2017. Primary caregivers completed the online survey which captured information on parent, child, and sibling wellbeing. A description of the cohort who participated in Wave 1 of the 1000 Families Study, and further details about the study, has been published and is freely available– it can be found .
Families who indicated that they were willing to be contacted again during the first wave of data collection were invited to participate in Wave 2 (if their child was under 16 years of age). Caregivers were contacted for Wave 2 between 2018 and 2021, around 2.5 years after they completed Wave 1. Wave 2 included an online survey only, and families were not asked to take part in a telephone interview. Primary caregivers were offered a £10 voucher for taking part in the second wave of the survey to say thank you for their time. A total of 650 caregivers completed Wave 2 of the 1000 Families Study. This included over 200 families who took part from March 2020 onwards, and therefore within the context of the COVID-19 pandemic.
Wave 3 of the 1000 Families Study is now underway, with data collection beginning in late 2021 and expecting to continue until the end of 2022. Again, families are invited to participate if they gave permission to be invited in the future during Wave 1 and Wave 2. We listened to family feedback throughout Wave 1 and Wave 2, and so the online survey repeats most of the measures included at Wave 1 and Wave 2, but some changes have been made. For example, we have added some questions asking about grandparents. We are also now able to follow up with families where their child is over the age of 16 years old, which we were not able to do at Wave 1 or 2. We are anticipating that around 700 families will take part in Wave 3.
If you participated in a previous wave of the 1000 Families Study, please keep an eye on your email as you will be receiving an invitation to take part in Wave 3 this year (if you gave permission for us to contact you during Wave 2). Primary caregivers will be offered a £10 voucher to say thank you for taking part.
We will provide information about the results of the research here, on the CEDAR website, and through our social media pages. You may opt to follow us on Twitter (@Family_RG1) and/or Facebook (www.facebook.com/FamilyRG1) to keep up-to-date with the research. You can also sign up for our Family Research newsletter below, as well as view our previous newsletters.
We would like to take this opportunity to say a huge thank you to all the families that have taken part in the 1000 Families Study so far. Being able to follow up with as many families as possible is important as this will allow us to begin answering questions about how experiences at one point of time can affect experiences at a later point. Understanding this will contribute to developing and advocating for better support for families of children with learning disabilities.
You can read the 1000 Families Study annual report for 2022 here.
If you have any questions, please feel free to contact us at [email protected].