Your experiences of caring for a child with an intellectual disability

Researchers at the University of Birmingham are starting two new research projects with families that have taken part in previous research studies.  It is hoped these projects will capture the lived experiences of these families.

When you think of a researcher what image comes to mind? Is it the stalked neck academic crunching numbers or figures, or is it the Professor boffin pouring over his dusty volumes of long lost research?  How close do researchers come to capturing people’s everyday experiences of caring for children with intellectual disabilities?  At the Cerebra Centre for Neurodevelopmental disorders (University of Birmingham) we have always been concerned about the views of parents of children with intellectual disabilities when forming our research questions.  Hopefully, if you have taken part in these projects you have found them useful.  Despite this, there still seems to be a gap between those initial rich and complex conversations with parents that inspire our research and the facts and figures that get published in research journals – somewhere the human element gets a little lost.  To some degree this is to be expected but ultimately we need to focus on what actually inspires policy change.  What makes services stand up and listen?  Facts go a long way but can they ever match up to people’s stories about their experiences – stories about their children’s needs, parents’ perceptions of these needs and the services they may go on to access?  We feel that these stories are powerful and that they can make a real difference when appealing to services, professionals and other researchers to step back and then make changes.

Children with intellectual disabilities have complex needs and a vast proportion of families caring for these children will experience difficulties for which they need support.  Researchers now know quite a lot about the needs of children with intellectual disabilities, however, very little is currently known about how caring for a child with an intellectual disability affects parents and carers and about the quality of support they are receiving from services.   It is time to close that gap between parents’ lived experiences and published research.   We are beginning two new research projects with families who have already taken part in our research studies; therefore, we will be joining two powerful forces: your voices and our facts and figures.  This way we can make an even bigger difference to children with intellectual disabilities and their families.   If you have previously taken part in our studies we need your help so please keep an eye out for our questionnaire and interviews looking at children’s characteristics and needs, challenging behaviour, your thoughts and feelings and service provision.   Letters or emails inviting you to take part in this research will be sent to you from September 2012.  It is the time to have your say!

If you have any further questions or would like to request further information about this new area of research please do not hesitate to get in touch.

Contact Details

Primary Contact: Dr Jane Waite 
Email: jea482@bham.ac.uk
Tel: +44 (0)121 414 7206

Professor Chris Oliver
Email: c.oliver@bham.ac.uk 
Tel: +44 (0)121 414 4909