Community-based programs for young people with Down syndrome School of Physiotherapy, La Trobe University School of Community Health,

Charles Sturt University

Down syndrome research project

Young people with Down syndrome often face significant barriers to community participation in exercise and social programs because of their need for supervision and motivation from a support person. We are running a research project at La Trobe and Charles Sturt Universities looking at the effects of two community-based programs for young people with Down syndrome. In this project, young people with Down syndrome are paired up with physiotherapy student-mentors from the University and together, they undertake either a gym program or a social program for 10 weeks. This project is funded by the National Health and Medical Research Council (NHMRC). It started at La Trobe University in Bundoora, Victoria in March last year. This year, together with Charles Sturt University, a project node has been established in Albury-Wodonga and we are now able to recruit participants from the area. Project participants have had really positive experiences. Here are some of the things they have had to say: I must say that Emma has thoroughly enjoyed the program to date. So much so that she even insisted on going one week when she was far from well. Maria, parent of a young person with Down syndrome who was a participant in the social group

Emma in a testing session with project tester, Stacey Cal and Sarah in the project ..following on from your research program, he now goes once a week and does a teen fitness class. He goes independently and he knows the gym well as a result of going there for 10 (weeks) for your study, and it is part of his weekly routine. It is a great community activity for him, and doesnt really rely on us (his parents) and he is loving it. I wish all research studies we are asked to be involved in could have potential like this in fact that is the reason I agreed to do your study! - J., mother of a participant in the gym group

We are looking for participants to start in the project in 2012. If you are or know a young person with Down syndrome aged between 14 to 22 from metropolitan Melbourne, Bendigo or AlburyWodonga, who would like to be involved, contact us or get someone to on 03-9479 5258 or e.wee@latrobe.edu.au and speak with Elin Wee.

PROJECT CONTACT: ELIN WEE 03-9479 5258 e.wee@latrobe.edu.au

Frequently-asked questions:
What is this project about? Your child will be paired with a physiotherapy student-mentor from the University and together, they will undertake either a 10-week gym or social program. Where is the project being held? We are running the project in metropolitan Melbourne, Bendigo and Albury-Wodonga. Can we choose which group we would like our child to go into? The project protocol does not allow any form of choice in group allocation. All participants will have an equal chance of being randomly allocated into either the gym or the social group. What that means is that it is a random process done by the computer to sort the participant into groups, and does not depend on any characteristics of the child, ie does not matter if your child is male/female, tall/short, or what age. This random process is a requirement of running such a research project. Regardless, the feedback we have had from participants in both groups so far is that they have really enjoyed the programs! Where will the programs be held? YMCA Victoria is kindly supporting the project by allowing our participants to be tested and train at any YMCA gym. For the gym group, where possible, you will train at the nearest YMCA gym to you. If there is none available or convenient, then we will organize for you to train at a local gym that is convenient for you to attend. For the social group, depending on the choice of social activity, participants may be indoors at home or outdoors at external venues. The choice of activity is decided upon in discussion involving the young people with Down syndrome, their families and the physiotherapy student-mentors. There are usually no restrictions to the choice of activity as long as it involves minimal physical activity. The young people with Down syndrome in BOTH groups will be asked to attend three testing sessions where we will measure their muscle strength and their ability to perform some work tasks including stacking boxes onto a table, walking while carrying 2 heavy buckets and going up and down a flight of stairs. The testing sessions are held once at baseline (before the 10-week program), once in Week 11 (after the 10week program ends) and once in Week 24 (3 months after the end of the 10-week program). More information about the project and programs is available by contacting the research team. Are they any costs involved? No, all costs incurred during the project programs (including gym costs and social activity costs) will be covered by us. However, you will be responsible for organizing for your child to travel to and from the gym if assigned into the gym group. In addition, all participants will be given $5 travel re-imbursement for each time they have to attend a testing session. How long does the project run for? Both the gym and social programs will run for 10-weeks in all. How can I get my child involved? There is a short screening process where we will ask you some questions about your childs medical history and current activity level. To get more information, please contact Elin Wee on 03-9479 5258 or email e.wee@latrobe.edu.au.