Challenging Behaviour & Family Adjustment in Genetic Syndromes V1
Research type
Research Study
Full title
Challenging Behaviour and Family Adjustment in Three Genetic Syndromes Associated with Intellectual Disabilities: A Longitudinal Follow-up Study
IRAS ID
125728
Contact name
Dawn Adams
Contact email
Research summary
Challenging behaviour, such as aggression or self-injury, is shown in approximately 1 in 10 individuals with a learning disability. For children who have particular syndromes, more severe disabilities or autistic like behaviours the prevalence is much higher. Once individuals begin to show these behaviours, they tend to last for many years (unless they receive treatment) and have a wide ranging negative impact upon the individual and their families.
This study will follow-up a sample of 60 individuals recruited into a study between 2007-2009 because they were showing high levels of challenging behaviour. Finding out more about how these individuals and their families are functioning now will allow us to identify the long-term impacts of such behaviours. The study will focus on assessing the child’s behaviour and think about how this links to their health and quality of life as well as how this effects the parents and wider family.
The study consists of two phases. In stage one, parents of all the participants will be asked to complete questionnaires and a telephone interview. We have tried to keep the measures identical to those used in 2007-2009 as this allows us to compare how the families were then with how they are now. The second stage involves the researchers visiting the family and observing the participant in different settings. Because these settings will be the same as in the 2007/9 study, longitudinal analyses can be undertaken on the data.
In order to make the study as strong as possible, a control group of individuals with the same genetic syndromes as those recruited into the original study but who are not showing challenging behaviour will be recruited. This will allow the research team to look at the results across time and between groups, strengthening our knowledge and conclusions within this poorly researched area.
REC name
West Midlands - Coventry & Warwickshire Research Ethics Committee
REC reference
14/WM/0068
Date of REC Opinion
9 Apr 2014
REC opinion
Further Information Favourable Opinion