Rob Brooks and Charlotte Lambert write: A study looking at the importance of social participation for children and young people with a neurodisability has been launched by researchers at Leeds Beckett University.
Working with colleagues from Newcastle University, they will be finding out how improving social participation could help those affected by a neurodisability.
Dr Rob Brooks, Occupational Therapy Course Director in the School of Clinical and Applied Sciences at Leeds Beckett, said: “Whenever you’re designing research, the ultimate goal is for it to have some benefit for your end users, which for me as a children’s therapist are the children with a neurodisability that we work with on a day-to-day basis. My question then is how can we do that without involving them and their parents and the healthcare professionals who deliver these interventions, how can we develop research without including them.
“We need to take that idea forward and we need to involve the young people and parents in the study so that they become integral to the design of the study, they feed into the results of the study and that they’re involved in creating an intervention that is actually useful for them.”
The focus groups will be held from January next year and volunteers are being sought.
Leeds Beckett Research Assistant Charlotte Lambert explains who they would like to attend the focus groups: “Neurodisability is an umbrella term which is associated with conditions relating to the brain, so for example ADHD, autism, cerebral palsy but also includes a number of other conditions which might include genetic conditions such as Downs Syndrome.
“We need children and young people aged six to 16 who have a neurodisability, parents of children and young people who have a neurodisability and healthcare professionals who work with them.”
The aim of the study is to better understand what interventions can be put into place to help improve social participation. Often children and young people with a neurodisability are less likely to join in and can often be excluded from normal activities such as parties and playdates, and it has been shown that this can have an impact on their mental health.
One of the parents who will be assisting with the focus groups is Laura. Her eight-year old son Leo has autism and ADHD. Laura will be helping lead the focus groups and says it’s vital not to underestimate the importance of social participation for children like Leo: “Friendships are really important and that’s why social participation is so important because it’s about giving children and young people those life-skills of feeling accepted for being themselves and for having unconditional friendships where it doesn’t matter if you get it wrong. There is quite a bit of that with children with a neurodisability in trying to get a sense of how you can facilitate these relationships.
“It is difficult for Leo when he goes into new situations and when you, for example, have autism or ADHD, you do see the world differently, or you might see the world differently, you’ve got a different conscious experience perhaps and I think what’s worrying is sometimes there’s a mismatch between how you’re seeing the world and how other people are seeing the world and how other people are thinking that you’re seeing the world.”
She says she is delighted to be involved in the project: “You are actually asking the service users and their parents and the health professionals who are working with these guys, you’re saying ok that’s what the evidence is what do you think about it, what are your experiences, what are your priorities and how does it all fit together so we can provide a service in the future which can help with those things. I love that. It’s like this research has got a real impact upon people’s experiences.”