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Welcome! Our newsletter is a chance to update you on the progress of our Cerebra 1,000 Families Study and highlight recent developments within the family research team.
Cerebra 1,000 Families Study Wave 2
Thank you to all of the families who have completed the survey for Wave 2 of the study – we’ve had over 300 responses so far! We are still following up with families who completed a survey in Wave 1, so please keep an eye out for an email from us asking you to participate in Wave 2. If you indicated you were happy to be contacted for follow-up, we will ask you to complete an online survey which should take around 20-30 minutes to complete. If you prefer to complete surveys on paper, you can request this when we contact you about taking part in Wave 2. Whether online or on paper, you will receive a £10 voucher for your time and for continuing to be part of the study. If you have any questions about Wave 2, please email Nikita and Caitlin at: familyresearch@warwick.ac.uk.
Cerebra 1,000 Families Study Wave 3
We are also very happy to announce 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. Having three waves of data will also allow us to begin answering questions about how experiences at one point of time can affect experiences at a later point in time. Understanding this will contribute to developing and advocating for better supports for families of children with learning disabilities. Wave 3 is likely to start in the autumn of 2020 or early 2021 for the first families who participated in the study during Waves 1 and 2. You may not have time to complete Wave 2 when you are invited. If this is the case, but you would like to carry on being invited to take part in the future, you can let us know when we send you an invite or you can email us at familyresearch@warwick.ac.uk.
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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.
Sibs Talk: School Intervention for siblings
Nikita Hayden, PhD student
Sibs Talk is a ten-session, one-to-one intervention approach for schools to complete with Key Stage 2 children who have a brother or sister who has a disability, special educational needs or a serious long-term condition. Evaluation questionnaires completed both before and after the Sibs Talk intervention were returned for 55 children from 11 schools. Siblings’ emotional and behavioural adjustment, according to their classroom teacher, was assessed using the Strengths and Difficulties Questionnaire (SDQ). Siblings’ attitudes to school were also measured using the “How I Feel About My School” (HIFAMS) questionnaire.
The results indicate improvements in the siblings’ SDQ and HIFAMS scores from the point in which they began the Sibs Talk intervention to the point in time they had the final intervention session. Four of the eight measures showed improvement: emotional symptoms; hyperactivity; prosocial behaviours and; SDQ total behavioural and emotional difficulties. The improvements seen were small to moderate in terms of size.
Written comments were also collected from the participating siblings. Overall, the data presented in this evaluation indicate that Sibs Talk may have contributed to positive outcomes for children who took part in the intervention. The full paper will be published soon – please email n.hayden@warwick.ac.uk if you are interested in the results of this study and would like to receive a copy of the paper once it has been published.
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Prosocial behaviours and behaviour problems of children with learning disability over time
Tom Bailey, Research Fellow
In our recent paper, we explored the behaviour problems and prosocial behaviours of children with learning disability over time. To our knowledge, this is the first study to examine patterns of behaviour over multiple time points in children with learning disability. The study included a sample of 555 children with LD previously identified from the Millennium Cohort Study, a UK longitudinal cohort study of approximately 20,000 children born in the year 2000.
When we talk about externalising and internalising behaviour, 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). Behaviours we consider prosocial include sharing, helping, and caring for other people. Externalising behaviour problems and prosocial behaviours of children with LD tended to improve over an 8-year period between ages 3 and 11. However, these improvements slowed down between the ages of five and seven. We thought this might be attributed to the child beginning school.
When comparing children with LD and typically developing children, children with LD showed higher levels of behavioural difficulties and lower levels of prosocial behaviour. These differences started early (around age three), highlighting the need for early intervention. In addition, although behaviour difficulties and prosocial behaviours improved over time for both groups of children, children with LD showed lower decreases in behaviour difficulties, and lower increases in prosocial behaviours compared to typically developing children over time. The full paper is available here: or by emailing: t.bailey.3@warwick.ac.uk.
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Mindfulness Online Stress Intervention for family carers of children and adults with intellectual (learning) disability (MOST-ID) Feasibility Study Update
In this feasibility study, we were testing if it would be possible to carry out a larger research study of online mindfulness in future. We tested the impact of an online mindfulness intervention (Be Mindful) on the stress and well-being of family carers of children and adults with learning disabilities. Some family carers also had three additional telephone sessions with a Peer Mentor to help them stick with Be Mindful. We found that family carers wanted to take part in the study and most of them went on to complete all of the questionnaires. Family carers told us that they were happy with the study design and doing Be Mindful. We also found that the additional telephone calls with a Peer Mentor were a motivation for family carers to do Be Mindful. Overall, family carers’ stress and well-being scores improved over the course of the study, and there were some small additional benefits for family carers who had the additional telephone calls, compared to family carers who did not have them. This study has now finished, and we are writing up the results to be published in a research journal.
We are, as ever, thankful to the family carers who have taken part in this research by sending us their questionnaires and taking part in interviews about the study and their experiences of Be Mindful. Our next step for this research will be to apply for research funding for a much bigger study.
A Parent’s Guide: Improving the well-being of young children with learning disabilities
In a previous newsletter, we sent details of a guide for parents on supporting the wellbeing of young children with learning disabilities that was developed by researchers at the University of Warwick working with a group of parents, Mencap, the Challenging Behaviour Foundation, and Cerebra. We are pleased to announce that this guide is now also available in Welsh! The Welsh version is here, and the English version is here.
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Take Part in Our Research
Families Needed for New Sibling Study
We are looking for another four families to take part in a new siblings study. The study would involve both your child with learning disability and your ‘typically’ developing child taking part in an individual activity with a researcher at your family home.
Sibling relationships are important because we know they are associated with well-being in childhood and adulthood. For siblings where one has a disability, siblings can take on important roles related to friendship, support, advocacy, and potentially, care.
To take part, we are looking for families that have two children, both aged 11 years to 15 years and 11 months, where one child has a ‘severe’ learning disability and one child is ‘typically’ developing. Please contact Nikita Hayden if you are interested in taking part, or would like to know more about the study and who can be involved:
n.hayden@warwick.ac.uk; Tel: 024 76 150571.
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Professor Richard Hastings
I have been in Warwick since 2013, and am the Cerebra Chair of Family Research. We realised that I do not seem to have introduced myself yet in one of these newsletters. I lead the family research team in CEDAR and the University of Warwick, including the Cerebra-funded 1,000 Families Study, of which many of you are a part. We do very much appreciate families’ involvement in all of our research, and I hope that over the next few years you will find interesting the research findings we tell you about from our various projects. My whole working life has been as an academic researcher, but I did work with adults with learning disability when I was a student and have stayed in the field since. We now focus on what we refer to as Applied Research – attempting to understand some of the challenges faced by children and adults with learning disability and/or autism and their families, and also developing and testing support approaches that may help to improve quality of life for families. We also work closely with health and social care services, and especially disability charities throughout the UK who use our research evidence in their campaigning for better services and better understanding.
Professor Kylie M Gray
I have recently arrived at CEDAR, from Monash University in Melbourne, Australia. I am a psychologist by training, and the majority of my work has been in the area of developmental disability (learning disability) and autism in children, adolescents and young people. My work has included addressing issues around diagnosis and assessment, development of assessment measures, mental health, school attendance, and the psychosocial wellbeing of children and families, along with the development and evaluation of supports and treatments. I am passionate about combining the disciplines of psychology, psychiatry, allied health and education to transfer clinically-driven research outcomes to the community and education systems in the UK, Australia and beyond.
Dr Emma Langley
I returned to CEDAR in October as a Research Fellow following the completion of my PhD in 2018. My PhD explored the wellbeing of family members of children with Intellectual (Learning) Disabilities and/or autism and I was part of the research team that designed and conducted Wave 1 of the 1,000 Families Study – so some of you may have taken part in a telephone interview with me whilst I was doing my PhD. I am continuing to work on projects which focus on family member wellbeing, with the aim to inform and improve support for families and the outcomes of children with a disability. I am currently working on a project which focuses on the wellbeing of fathers of children with disabilities, where I am collaborating with a small group of fathers to share existing research findings on paternal wellbeing and together produce a practical resource for other fathers, based on existing research and their personal experiences.
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