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Cerebra Family Research Group Newsletter
May 2017
Welcome! Our newsletter is a chance to update you on the progress of our Cerebra 1000 families study and highlight recent developments within the family research team. 
Cerebra 1,000 families study 

Update - final 200 needed!
As always we would like to say thank you to all the families that have taken part in the 1000 families study so far. Since launching our study in November 2015 we have had 800 families take our survey, with a final 200 now needed to reach our 1000 target!

Extended age range for 1000 families study
We received a great deal of helpful feedback during the first wave of the study and a number of requests from parents of teenagers with learning disabilities to take our survey. In response to this we sought further ethical approval and have recently extended the age range for families of children up to 15 years, 11 months. If you know families of children in this upper age range who would like to take part, please ask them to visit our website to find out more. 

Communicating our research

Gatlinburg Conference, USA
The Gatlinburg Conference is held once a year with a specific focus on research in Intellectual Disability. It is attended by researchers and clinicians who are in the early stages of their career and those who are established internationally. The conference was a wonderful opportunity for members of the Family Research Group to share and discuss their research on an international platform. This year Mikeda Jess and Emma Langley from the Family Research Group were invited to present findings from their first PhD studies.

Mikeda presented her findings on mothers’ positivity raising children with Intellectual Disability. Mikeda showed that overall positivity for mothers is made up of five components: satisfaction with life, satisfaction with family, positive affect (general positive emotion experienced day-to-day), positive perceptions of their child and how confident mothers felt in raising their child with intellectual disability. Although mothers were only studied at one time point, Mikeda found that those who had higher overall positivity in their lives were less likely to report mental health problems. Results from a follow-up study will be shared with our readers in the next newsletter.

Emma presented her findings on parental relationship satisfaction in families of children with autism spectrum disorders which has recently been published in a peer-reviewed journal. The study explored whether mothers and fathers of children with ASD are satisfied with their relationship, and what individual or family-level factors were related to couple’s relationship satisfaction levels. The data from 146 couples suggested that mothers and fathers generally agree on how satisfied they are with their relationship (over half of the couples were well adjusted in their relationship), and that relationship satisfaction appears to be related to parents’ depressive symptoms and the behaviour problems of their child with ASD. The higher the depression levels, the lower the parent reported on relationship satisfaction, for both mothers and fathers. Also, as behaviour problems increased, relationship satisfaction decreased. Relationship satisfaction was not related to the behaviour problems of a sibling, the number of children in the household, or the socioeconomic status of families.
Current research findings
Mindfulness support for parents of adults with Developmental Disabilities
Professor Richard Hastings, Cerebra Chair of Family Research

Mindfulness-based interventions have been shown to be an effective method of reducing stress and improving well-being among a variety of populations, and are especially relevant to parents of adults with autism spectrum disorder and developmental disabilities because of the chronic stress they may experience and the unique stressors they face as their children transition into adulthood. Richard has been working with Dr Lunky’s team in Toronto, Canada to take a closer look at the impact of Mindfulness on caregivers of adults with autism spectrum disorder and developmental disabilities. Parents seeking help or services for their adult children were divided into two groups over a period of six weeks. One group participated in a weekly support and information group and learned about resources and services available for their adult children, the other participated in a group-based Mindfulness intervention. Results showed that the parents in the Mindfulness group reported reductions in depression and stress, whereas the parents in the other group did not, and the change was sustained over time.  
This project in Canada continues our work in the UK on mindfulness and parents with children with developmental disabilities (learning disabilities and/or autism). In our recent UK study, a small group of parents facing many challenges were offered an 8-week mindfulness course and reported lower stress following this course.
Informal caregivers of people with an intellectual disability in England: health, quality of life and impact of caring
Dr Vaso Totsika, Associate Professor
Caring for a family member with learning disability has often been associated with a negative impact for the caregivers. What we know about caregivers though is usually through comparing them to non-caregivers. With this study, we wanted to explore how caregivers of people with a learning disability (i.e., intellectual disability) report on their well-being compared to caregivers of people with other disabilities. Compared to other caregivers, providing care to a person with learning disability was not associated with reduced quality of life. There was an 82% increased risk of reporting poorer health compared to other caregivers, however poorer health was not likely to be due to caregiving. Carers of people with learning disabilities were more likely to be struggling financially and have a high caring load and these factors were related to lower well-being. Dr. Totsika and her colleagues concluded that low income and long caregiving hours may make caregivers more susceptible to negative well-being. Therefore, support for caregivers of people with Intellectual Disability should focus on alleviating these two factors.
View the paper 
Meet members of the team
A big part of the 1000 families study includes talking to caregivers on the telephone about their child's day-to-day activities - which you may already taken part in. We would like to introduce you to some of our team members who help conduct these telephone calls and their interests in family research.

Ruth Thomas, Research Assistant

I am a research assistant working on a variety of research projects including the 1000 families study which involves arranging and conducting interviews with caregivers. So far I have spoken to over 60 parents and have found parents to be overwhelmingly positive about their child's progress and what they can do to support them. While reading about a child's diagnosis on the survey can provide us with factual information, actually hearing about the realities of living with a child with additional needs provides us with a more complete picture.

Nikita Hayden, PhD Student
You may remember being asked on the survey about whether your child with a learning disability has any brothers or sisters? This is the part of the study that my doctoral research is particularly interested in. My research explores the educational and psychological outcomes for children who have a sibling with an intellectual disability. As a sibling of a brother with ASD I have a deep interest in this topic and want to know more about siblings' experiences and how they might be better supported in the future. I also interview caregivers as part of the 1000 families study and have found it has been a great way to learn more about families' experiences.

Jane Margetson,  Research Officer (Cerebra) and PhD Student

I am a Research Officer working for Cerebra and started my PhD at CEDAR which has a focus on parenting approaches used by mothers and fathers of children with intellectual disabilities (ID). I am also looking to do research evaluating parent training interventions that might be of use for families of children with ID. I have been working on the 1000 families study helping to recruit families and conduct telephone interviews.
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


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

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