Children with disabilities don’t play enough, research suggests. But that might be about to change. A team of occupational therapists at McGill University is launching a mobile app that will help such children and their families locate leisure activities close to home.

“There are resources for children, there are resources for leisure, but there isn’t anything for children with disabilities and leisure … so we decided to develop this app called Jooay,” says Keiko Shikako-Thomas, a faculty member at McGill’s School of Physical and Occupational Therapy and co-leader of the project.“Jooay,” a play on the French word “jouer” (to play), is an interactive, user-friendly app that offers information about nearby physical activities, music classes and art classes tailored to a child’s special needs. Parents can browse through activities by category, by keyword or by disability type. They can add new activities and connect with other families through discussion boards. The application also includes a GPS, allowing any user in Canada to access a list of activities indexed from closest to furthest.Helene Louise, a Montreal mother who helped her daughter overcome a disability through physical and musical activities, sampled the pre-release version of Jooay and calls the app a “brilliant” idea. “If Jooay had been around when I was struggling with my daughter, it would have certainly made a big difference,” she said, recalling feeling overwhelmed when her daughter, Amelia, suffered a childhood stroke around the time of birth. Louise was told it was unlikely her daughter would ever walk. Louise, who is also the author of a book on parenting, helped Amelia grow into a capable and confident 13-year old, but at the time of the diagnosis, she wished for more resources and support. She said she believes that Jooay will help other parents of children with disabilities find respite, hope and a sense of community.More than a location device, “Jooay” is intended to encourage social interaction among children with disabilities, and to enhance their quality of life.“We want to create a positive community, promoting leisure and facilitating leisure, so that the kids who are doing activities in the same area can connect and meet people,” says Shikako-Thomas, 33.

The mobile application was also developed with the goal of improving the mental health and physical well-being of its users, says Annette Majnemer, director and associate dean of McGill’s School of Physical and Occupational Therapy and the other brain behind “Jooay.”

Majnemer, 56, says that for kids with disabilities, participation in leisure activities, such as attending a yoga class or playing an instrument, can facilitate character development, promote cardiovascular health, relieve stress and anxiety and help prevent chronic disease.

José Malo, executive director of the Quebec Cerebral Palsy Sports Association, agrees. She says any child, especially one with cerebral palsy whose muscular strength and coordination are impaired, can benefit from play and physical activity. But such benefits go beyond any specific disability, Malo says. “I could give you many examples of people who had an accident, started practising a sport and regained an appetite for life.”

Majnemer and Shikako-Thomas had the idea for the app in 2013, when a study they conducted revealed that leisure participation among children with disabilities is significantly lower than among their peers, in part because families don’t know what programs exist or how to access them.

“We felt that this was one barrier that is easy to overcome, and that (this app) would enable them to participate in activities of their choosing,” Majnemer says.

To develop “Jooay,” Majnemer and Shikako-Thomas received funding from the Canadian Institutes of Health Research (CIHR), NeuroDevNet and the Rick Hansen Foundation, and partnered with the Montreal Children’s Hospital Foundation and the Trevor Williams Foundation.

The “Jooay” app is one of the first initiatives to emerge from CHILD LeisureNet, a pan-Canadian network of stakeholders created in 2014. The network brings together researchers, families and youth, policy-makers and health care providers interested in promoting leisure activities for children with cerebral palsy, juvenile rheumatoid arthritis, traumatic brain and spinal cord injury, developmental coordination disorder and other physical health conditions.

Majnemer and Shikako-Thomas say they hope that the information generated through their application can help direct future research, and will be used to inform better policies and programs.

A French and an English version of “Jooay” are expected to be released mid-March in Quebec, Ontario, Saskatchewan, Alberta and British Columbia. The free app for iOS and Android will be available free at the App store, Google Play andon the Jooay website.

 

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