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Cerebra Family Research Group Newsletter
May 2016
Cerebra 1,000 families study update
The team would like to say a big thank you to parents and caregivers who have already participated in the 1,000 families research study. Since launching the study in November 2015 we have had survey responses from parents and caregivers from over 160 families, with a large number also agreeing to be interviewed about their child by one of our researchers. We still have a long way to go before reaching our goal of involving “1,000 families” but have been really encouraged by the response so far. From speaking to some of you we have been pleased to receive positive feedback about the study, specifically that it raises awareness about your lives and the lives of other families who have a child with a disability.
Thank you also to those that have agreed to spread the word about the study and re-post it on social media. We would really appreciate if you can continue to do this by sharing the survey link (www.surveymonkey.com/r/1000families) and our social media posts.
Fathers—We need you too!
It is equally important to us to learn about the experiences of fathers who are often secondary caregivers in our survey, however so far we have only heard from 2! We define secondary caregivers as anyone who is over the age of 18 and has parental caregiving responsibilities for your child, so other people such as a step-parent, grandparent or older sibling can respond, although we are especially keen to hear from fathers. Most research studies only ask about the experiences of mothers, but by recruiting other caregivers we will be able to explore whether primary and secondary caregivers have similar or different experiences and understand the experience of the family as a whole. 

If you have already completed the survey and your partner or another person who regularly helps you care for your child has not, please encourage them to complete the survey online or alternatively request a paper copy from familyresearch@warwick.ac.uk. Secondary caregivers are not required for the telephone interview.
Cerebra Annual Conference, 28th April 2016
Cerebra held its annual conference ‘Improving Mental health and Well-being for young people with Autism, ADHD and Learning Disabilities' in London this April. We learnt about current research happening throughout the UK, all helping to improve outcomes for young people affected by mental health. The stand-out speaker was undoubtedly Mair Elliot, a 19 year old mental health campaigner, diagnosed with autism who has experienced severe mental health problems. It was a great opportunity for parents, carers, and professionals to hear first-hand what it is like to be a young person with autism and have the additional challenge of living with mental health problems. Mair’s inspirational presentation certainly gave everyone food for thought. 
See more information about the conference, including all the presentations from the day.
Family Research Ambassadors Project
Cardiff Law School and Cerebra have been together awarded funding to help improve the impact of research and make it more accessible. With this funding the Family Research Ambassador Project has been launched, assisted by eight parents and carers of disabled children. The project aims to produce a ‘Problem Solving Toolkit’ that will focus on tackling common problems such as dealing with statutory agencies in relation to the provision of health, social care and education support services, and will be distributed as widely as possible within various disability support groups and to parents of disabled children. Find out more about the Family Research Ambassador Project.
Recent family research
The research that you participate in contributes to a greater understanding of families who are raising a child with disabilities and - importantly - their needs. Although publication of the results of big research projects such as the Cerebra 1,000 families study can take a while, we are keen to share the results of other family research projects that we are carrying out.
Maternal Positivity in mothers of children with Intellectual Disabilities
Mikeda Jess, PhD Student
My most recent project looked at the relationship between maternal positivity, maternal well-being and child behaviours. We defined maternal positivity as: being satisfied with life in general, satisfied with family life, satisfied with parenting, having positive emotions and positive perceptions of their child with intellectual disabilities (ID). We found that mothers with higher levels of maternal positivity had lower levels of anxiety, symptoms of depression and parenting stress. We believe that further research is needed to explore the function of maternal positivity.
Relationship satisfaction in parents of children with autism
Emma Langley, PhD Student
I have recently researched how satisfied parents of children with autism are within their couple relationship and some of the factors which may have an impact on how they feel about their spouse or partner. Findings revealed that mothers’ and fathers’ relationship satisfaction fell just within the ‘distressed' category. Interestingly there were no differences in how mothers and fathers reported on their relationship. Mothers and fathers reported lower relationship satisfaction when they reported more symptoms of depression and their child had significant behaviour problems. Find out more about our current PhD students.
Challenging behaviour and Positive Behaviour Support (PBS)
If your son or daughter has behaviours that have been labelled as challenging or you know someone with a child or adult with a learning disability or autism who does, then the Paving the Way website may be of interest to you. In a recent blog Richard Hastings discusses PBS and highlights free PBS resources available to family carers. Read Richard’s blog and download PBS resources.
If you have any questions or would like further information, please don't hesitate to get in touch with us on 02476 524 139, or email us at familyresearch@warwick.ac.uk.
 
 


 






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Cerebra Family Research Group · University of Warwick · Coventry, CV4 7AL · United Kingdom

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