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Welcome! It has been some time since you last heard from us, so our newsletter is an opportunity to update you on the progress of the Cerebra 1,000 Families Study and to share recent findings and developments from the family research team.
Cerebra 1,000 Families Study Wave 2
We have been following up with all families who took part originally in the 1,000 Families Study (we called this Wave 1, and the follow-up is Wave 2). Thank you to all of the families who have completed the survey for Wave 2 of the study – we’ve had over 650 responses so far! Your responses will help further our understanding of what it is like to raise a child with learning disability in the UK and will shape future support for families and children.
We are coming to the end of data collection for Wave 2. If you took part in Wave 1, it is your last chance now to take part if you are eligible and interested in doing so. You will receive a £10 voucher for your time and for continuing to be part of the study. If you are eligible to take part, you will have received emails from us, but if you have missed these messages or have any questions about Wave 2, please email the team at: familyresearch@warwick.ac.uk.
Cerebra 1,000 Families Study Wave 3
If you received our last newsletter, you will be aware that Cerebra have provided funding for the next stage of the 1,000 Families Study, allowing us to conduct a third wave of data collection. Being able to follow up with as many families as possible is important, as we can trace how family experiences change over time. Understanding this will contribute to developing and advocating for better support for families of children with learning disabilities.
Wave 3 will be starting in late 2021 for the first families who participated in the study during Waves 1 and 2. For Wave 3, we are intending to seek ethical permission to extend the age range to include children over the age of 16. If you took part in the first wave of the 1,000 Families Study and your child is over the age of 16 (and so cannot take part in the current Wave 2), we will have contacted you to check you would be willing to be contacted about future waves of the Cerebra 1,000 Families Study. You could also complete the very brief online form to let us know you would be willing to be contacted about Wave 3 of the study:
https://warwick.ac.uk/fac/soc/cedar/familyresearch/cerebra1000families/furthercontact16plus. Additionally, if you have any questions related to Wave 3, please email the team at: familyresearch@warwick.ac.uk.
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Webinar: Supporting the well-being of dads of disabled children
Join this webinar where family researchers and dads of disabled children talk about the importance of father well-being and launch their online resource designed by dads for dads. Fathers of disabled children are rarely involved in research, which means that we know little about their experiences and the kinds of support that would be helpful.
In response to this, a group of dads of disabled children from Coventry and surrounding areas worked with Emma Langley, a family researcher at the University of Warwick, to capture their experiences and create a resource aimed at supporting the well-being of other dads. Fathers of disabled children, family members, researchers, and professionals are warmly invited to a webinar where the group will talk about the importance of supporting fathers of disabled children and showcase the free online video resource that has been created.
Date: Wednesday 31st March 2021
Time: 6.00PM – 7.00 PM GMT
Location: Online webinar (presenters only on view).
Register your place at: https://dads.eventbrite.co.uk.
A log-in link will be emailed to you in advance.
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Coronavirus
During the COVID-19 pandemic, children with learning diabilities and their families have been disproportionately affected with new challenges, increased worries, and reductions in support from services and professionals. It is important to remember that you are not alone.
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COVID-19 impact on psychological outcomes of parents, siblings and children with intellectual disability: longitudinal before and during lockdown design
Tom examined the impact of COVID-19 restrictions on parents, siblings and children with a learning disability, using data obtained from Wave 2 of the 1,000 Families Study collected both pre-lockdown and during/just after the first lockdown. Tom used data gathered from 397 family caregivers who completed Wave 2 of the study before the end of July 2020, with some having completed the survey before the first lockdown and some during lockdown and just after. By accounting for how everyone was doing at the time of the Wave 1 survey, Tom did not find any overall evidence of a negative impact of the first lockdown on the 1,000 Family Study families in terms of parental well-being, the well-being of siblings, and the well-being of children with a learning disability. This study is unique as other research studies were not in place to examine changes in well-being before and after the first lockdown restrictions back in March 2020 (because the pandemic was not expected!).
Further research will be required to determine whether the experiences of loss of services, worries about COVID-19, and restrictions in social contact will take longer to affect parents, siblings, and children with a learning disability. Additionally, it will be important to examine the effect of later lockdowns such as the Winter lockdown, which may have made things much harder for families. Finally, some families will have been affected much more than others, and we need to do work to understand which families have been more affected by the pandemic situation.
The study has been published, and is available here to download and read for free. If you have any questions or would like to know more, please email T.Bailey.3@warwick.ac.uk
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Coronavirus and adults with learning disabilities
Members of the research team at CEDAR have also been working on a project to find out more about the lives of adults with learning disabilities (those 16+) through the coronavirus pandemic.
If you are interested in finding out more, the results of this study so far are available by following this link: https://warwick.ac.uk/fac/soc/cedar/covid19-learningdisability.
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Congratulations!
We want to wish a huge congratulations to Nikita Hayden on passing her PhD! Many of you will have spoken to Nikita during the Wave 1 telephone interviews. Nikita's PhD focused on siblings of children and adults with learning and developmental disabilities.
"I examined siblings’ psychological and educational outcomes, as well as their sibling relationships. I have worked with the 1,000 Families Study since 2016 and I wanted to thank you all for taking part in the study. As a sibling of someone with autism myself, I think this research is so important, and I loved getting to learn from, and talk with, the families involved in this study.
In my PhD, we found that child and adult siblings had poorer psychological outcomes in comparison to other samples, but these poorer outcomes were mostly related to contextual factors, such as socio-economic status and caring roles. We then considered what support we might offer siblings in a study evaluating Sibs Talk, a school-based intervention designed by the UK charity, Sibs. Sibs Talk was associated with promising positive outcomes for the primary-aged siblings that took part. We also analysed sibling data from the 1,000 Families Study to examine sibling relationships. We found evidence that sibling relationships where one sibling has a learning disability were similar to other sibling relationships, in that these relationships were two-way and involve positive aspects and negative aspects to the relationship.
My first two papers are available for free by following the embedded links above. Please do get in touch if you want to find out more about my sibling research - Nikita.Hayden@warwick.ac.uk."
- Nikita
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Current Research Findings
We would like to give you an update on current research and introduce members of the Family Research Group.
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Adjustment and sibling relationships associated with clusters of needs in children with autism
Louise Rixon, PhD Student
Previous research has shown differences in the outcomes of siblings of children with autism, with not all siblings having poor outcomes or poor sibling relationships. Therefore, Louise explored whether characteristics of children with autism may be linked to their siblings' well-being and the quality of the sibling relationship.
Louise did this by using information from 168 families who have a child with autism and grouping together the children with similar characteristics (such as children who display more behaviour problems and have a higher severity of autism symptoms) and then comparing sibling outcomes across the groups. This is called cluster analysis. Behaviour problems may be described as externalising or internalising behaviour, where we’re talking about either behaviour that is directed outward at others, such as aggression (externalising), or behaviour that is directed inward, such as feeling anxious or depressed (internalising).
When using cluster analysis, Louise found five meaningful clustered groups of children with autism with differing levels of strengths and needs. Siblings of autistic children with high levels of adaptive skills, but high externalising and internalising problems, had high externalising and internalising problems themselves, along with more conflict in their sibling relationship. Siblings of autistic children with more problems with their adaptive skills and more severe autism symptoms reported lower warmth in their sibling relationship, but not elevated internalising and externalising behaviour problems.
The full reseaerch paper is available here: or by emailing: L.Rixon@warwick.ac.uk.
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Meet New Members of the Team
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Caitlin Murray, Research Fellow
I've been working on the Cerebra 1,000 Families Study for the last few years as a PhD student, and have enjoyed speaking to a number of you during Wave 1. I'm now working as a Research Fellow on the Cerebra 1,000 Families Study at CEDAR. In my new role, I will be focusing on longitudinal research with families of children with learning disability, including working on Wave 3 of the Cerebra 1,000 Families Study as well as using data from Wave 1 and 2 to answer questions about child, parent and family well-being. I look forward to continuing to work with families on this project and on other family research in CEDAR.
Caitlin Williams, PhD Student
I joined CEDAR in October 2020 as a full-time first year PhD student. My PhD will focus on exploring well-being in families of children with learning disabilities over time, predominantly using data from the Cerebra 1,000 Families Study. My first research study will be investigating how the behaviours of both a child with learning disability and their sibling might interact with maternal distress and life satisfaction. This study uses the data collected from Wave 1 of the 1,000 Families Study. During my PhD I will be heavily involved with Wave 3 planning and data collection, so I look forward to getting to know you better in the future.
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