Not yet recruitingNAINTERVENTIONAL

Downstream Effects of Personalized 'Top-down' Participation-based Interventions Among Youth With Physical Disabilities

This study is exploring how engaging in activities chosen by young people with physical disabilities can improve their overall health. For 8 weeks, 150 participants from Quebec and Ontario will take part in community activities they enjoy, such as playing a musical instrument or swimming. Researchers want to see if this approach helps improve important body functions like movement, attention, and mood. Currently, treatments often focus on fixing specific physical problems. This study tries a different way, focusing on what young people can do and enjoy, believing that this can also lead to better physical and mental well-being. The findings could help doctors, families, and policymakers choose better ways to support young people with disabilities.

At a glance

Status

Not yet recruiting

Phase

Sponsor

McGill University

Enrolment target

150

Start

01 Nov 2023

Estimated completion

01 Apr 2027

Spinal Cord Injuries Spina Bifida Musculoskeletal Disorder Juvenile Arthritis Amputation Cerebral Palsy

What is this study about?

This research is looking into new ways to help young people aged 12 to 18 who have physical disabilities. Often, these young people find it hard to join in community activities, which can affect their health and happiness. Traditional treatments often focus on fixing specific physical problems. However, this study is trying a different approach, where the main focus is on helping young people get involved in activities they love and choose themselves, right in their own communities.

Researchers believe that if young people choose activities that are meaningful to them, it might not only help them participate more but also improve other important areas of their health. Things like their movement skills, how well they can pay attention, and their overall mood or emotional well-being could all benefit. They want to see if taking part in an 8-week community activity, like playing an instrument or drawing, can make a real difference to these areas.

One hundred and fifty young people across Quebec and Ontario will be part of this study. They will pick an activity they're interested in, such as sledge hockey or swimming, and take part in it for 8 weeks. Throughout this time, and before and after, researchers will carefully measure changes in their movement, behaviour, and emotions. The goal is to see if this 'top-down' approach, which puts the young person's choices and participation first, can lead to wider health benefits. The results of this study could help guide doctors, families, and people who make healthcare decisions to offer more effective and enjoyable ways for young people with disabilities to improve their health.

Key takeaways

This study focuses on how chosen activities can help young people with physical disabilities.
It involves 8 weeks of participating in an enjoyable community activity.
Researchers will measure improvements in movement, behaviour, and emotions.
The study includes young people aged 12-18 with various physical disabilities in Quebec and Ontario.
The aim is to find new, effective ways to support overall well-being.

Who may be eligible?

This study is looking for young people aged 12 to 18 who have a physical disability. This could include conditions like cerebral palsy, spina bifida, spinal cord injuries, certain long-term muscle or bone conditions, juvenile arthritis, or amputation. Participants should have some difficulty with moving around, for example, needing aids or help to go up stairs or walk on different surfaces.

It's important that you live in either Quebec or Ontario. Even if you have some difficulties with thinking or communication, you might still be able to join the study. Researchers will use special ways to make sure your experiences are understood.

However, some conditions mean you can't take part. This includes if you've recently had a severe brain injury, major surgery, or certain treatments in the last year or six months, or if you're expecting to have them during the study. Young people with progressive conditions that get worse over time, or those with significant untreated mental health conditions, would also not be able to join.

Could this study suit you?

Answer these quick questions to see if you may be eligible. This is a guide only — the research team makes the final call.

Are you between 12 and 18 years old?
Do you have a physical disability like cerebral palsy, spina bifida, or juvenile arthritis?
Do you sometimes need help or aids to move around or use stairs?
Do you live in Quebec or Ontario?
Have you not had a severe brain injury, major surgery, or certain treatments in the last year or six months?

Answer every question to see your result.

What does participation involve?

If you decide to take part, you would be asked to choose a community-based activity that you enjoy, such as an art class, a sports group like sledge hockey, or playing a musical instrument. You would then participate in this chosen activity for 8 weeks.

Before you start the activity, during the 8 weeks, and after it finishes, researchers will check your progress. This will involve some assessments to measure things like your movement (for example, how far you can reach or your grip strength), your behaviour, and your emotions. These checks will be done multiple times to see how you change over the study period. You won't be given any new medication as part of this study; it's all about participating in an activity you choose. The total duration of your active involvement in the study, including assessments, will be over a few months.

Potential risks and benefits

Taking part in this study could offer several potential benefits, such as improved movement, better attention, and a more positive mood, simply by doing an activity you enjoy. It’s also a chance to meet new people and try new things in your community. There are no known direct medical risks as this study doesn’t involve new medications or procedures, only participation in a chosen activity. However, like any activity, there's always a small chance of minor injury or discomfort, though you will choose an activity that suits your abilities. You are completely free to stop participating in the study at any time, for any reason, without it affecting your usual medical care.

Locations (1)

Lethbridge-Layton-Mackay Rehabilitation Center of CIUSSS West-Central Montreal (Mackay site)
Verified postcode
Montreal, Canada

Common questions

What kind of activities can I choose?

You can choose any community activity you enjoy, like sledge hockey, drawing, playing a musical instrument, or swimming, as long as it's safe and suitable for you.

How long will I be in the study?

You'll participate in your chosen activity for 8 weeks, and there will be assessments before, during, and after this period, spread out over a few months.

Do I have to take any new medicine?

No, this study doesn't involve any new medication. It's all about taking part in a chosen community activity.

Who can join the study?

Young people aged 12-18 with certain physical disabilities living in Quebec or Ontario who have some difficulty with mobility.

What happens if I want to stop?

You can stop participating in the study at any time, for any reason, without it affecting your medical care.

How to find out more

Dana Anaby, PhD

dana.anaby@mcgill.ca 15143984400 Official trial record

Always speak to your GP or specialist before deciding to take part in a study.