My Life with Down Syndrome research from Ulster University

Derry Journal

Ulster University led research project to examine the health, wellbeing and development of people with Down Syndrome.

Transcript

00:00This is a really exciting day for us to be able to launch our project My Life With Down Syndrome.

00:06The sun has shone on us today and I hope it will continue to shine on this project.

00:13My name is Professor Frank Casey, I'm a professor of paediatric cardiology.

00:20So today we're very excited to launch a very major project which we've called

00:25My Life With Down Syndrome and in that project over the next few years we want to

00:30learn about the lives of children and young people with Down Syndrome born in Northern Ireland,

00:36to learn about all of the health issues that they face, the challenges that they face

00:41in education and sometimes in employment and from that information what we want to do is to

00:49bring together advice to policy makers so that we can in the future perhaps influence the resource

00:55that young people with Down Syndrome have so that we can give them the best quality of life.

01:00I believe there's a gap in the research, can you tell me about that?

01:03Has there just not been resources allocated to science I guess?

01:08Well people with disability I suppose do have less access to inclusion in research and that's

01:16something that's really important for us in this project that we actually interact with the parents

01:21of those young people with Down Syndrome with the young people themselves where possible and we're

01:27using some innovative techniques to do that and so we hope that it will be as inclusive as possible

01:32to get the best possible information to advise us in the future.

01:36Can you tell me about your techniques maybe if it's too much scientific talk?

01:42Well we obviously we collect a lot of medical data which is is complicated but we also are

01:47collecting with it's a multidisciplinary project so we've lots of input from our psychologists as

01:53well who are using techniques using images and a technique called photo voice as well to interact

01:59with some of the young people who are not as good at communication as others.

02:05And is this research important to you? What kind of feelings does it kind of surround us for you?

02:10It's really important over my working career as a children's cardiologist I've seen many many

02:17children with Down Syndrome worked with their families and seen that the love and affection

02:23that they bestow upon them and so it's really important for all of our team to get the best

02:29possible outcome not just from their heart condition but from all of their health aspects

02:34so that they can enjoy life in the future.

02:36Yes it's my life with Down Syndrome. I was treated badly because not with me being an actor but also

02:48yes from my experience yes I was yes I am an actor but I know what problems for young kids

02:58for court problems but luckily I was in typical hands of Professor Casey in my life

03:08so it was really nice just to be not just being humble but also to be a patron of a charity

03:18and I said yes to that in my life.

03:24Yeah my name's Christopher and I'm the manager at Fall Down Syndrome Trust.

03:26Can you tell me what we're doing here today?

03:28Yeah so we're here today to launch research for my life with Down Syndrome so it's looking at a

03:33holistic approach not just medically about children with Down Syndrome it's looking at that full life

03:37approach and maybe looking at areas where they can improve and where we can strengthen things

03:41and support them better going forward.

03:43And what kind of emotions do you have around today?

03:47Yeah look seeing obviously Professor Frank Casey and the team being so passionate about the research

03:51is something that's really lit a fire in me leading our organisation and making sure that

03:56the research is driving and changing things to make a positive future for people with Down Syndrome.

04:11My name is Catriona Wilson.

04:13Can you tell me what we're doing here today?

04:15So we're here today with the launch of my life with Down Syndrome

04:18and part of the University of Ulster and collaborated with the Royal Belfast Children

04:24Royal Belfast Hospital for Sick Children cardiology department.

04:28And you've a personal attachment to this can you tell me a bit about that?

04:31Yeah so I have a nine-year-old daughter with Down Syndrome and so we've known Professor Casey

04:37who's leading the team from before I was before she was born when I was pregnant with her.

04:42And how important is this to you seeing this this research being launched today

04:47since you have such a personal connection?

04:49Yeah I think this research is fantastic I think I think they're going to get a lot out of it.

04:53I think they're going to highlight gaps that they didn't know even existed in the educational

04:57medical and social care needs for children with Down Syndrome so yeah I think it's

05:00important and very exciting research that they're doing.

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