海角社区

At a Glance:

听

Issue:听It can be challenging for families who have children with disabilities to find sports and leisure programs in their communities, but doing so is important because play and recreation are vital to children鈥檚 development, health and well-being.

Research:听In 2014, Keiko Shikako, OT, PhD, an associate professor at 海角社区, started working with a team of researchers, youth and family partners, and community organizations to develop an app to help families connect children and youth with disabilities with leisure activities and other programs in their communities.

Impact:听Today, this app, called Jooay, provides information on nearly 4,000 activities in all provinces and territories and has led to a community of users and ambassadors who together are creating a better quality of life and a more inclusive world for children and youth with disabilities and their families.

Kirsti Cyprien, her three children and partner were all born and raised in Fort McMurray, Alberta. Her middle and oldest sons, ages 13 and 14, have autism. Living in a smaller town in northern Alberta provided some advantages. Kirsti鈥檚 family had a strong connection with the community, which offered resources to help her sons thrive. Then in May 2016, everything changed when one of the largest wildfires in Canada鈥檚 history forced thousands of Albertans to evacuate their homes.

Kirsti and her family were first relocated to Edmonton and then lived for some time in Red Deer. It was challenging to move to a new town without her community鈥檚 resources, not to mention the support of friends and neighbours who were then scattered throughout Alberta. Kirsti found herself urgently trying to navigate their new community to find resources that would fit her sons鈥� needs and interests. That was when she heard about Jooay, a free app that lists local sports and leisure activities designed to support children with disabilities, their families and caregivers.

After downloading Jooay, Kirsti was able to find resources in Red Deer to benefit and support her family. She found the Aspire Centre, which connected her to a school and a specialized therapy service. Thanks to the app, Kirsti also signed her sons up for baseball lessons. 鈥淢y boys are very different, and we were able to find programs tailored to each of their abilities, so they could both have fun playing baseball,鈥� says Kirsti.

A creative solution to increase access to inclusive play for children with disabilities

Children with disabilities participate in fewer recreational activities than their peers who do not have disabilities, for reasons linked to impairment, inaccessibility of the activities, attitudinal barriers and lack of social supports. This is problematic because play and recreation are crucial for a child鈥檚 development, health and well-being, and in creating a sense of belonging. Critically, by modifying the environments for play and recreation, barriers to participation for children with disabilities can be mitigated.

Enter Keiko Shikako, OT, PhD, an associate professor at 海角社区 and the Canada Research Chair in Childhood Disability, granted by the Canadian Institutes of Health Research (CIHR). Right after receiving her PhD in 2012, Prof. Shikako was awarded a CIHR Dissemination Grant to help her share the results from her research in a series of public engagement events. It was during those conversations with community members that the idea to create the Jooay app was born.

Prof. Shikako met with youth, parents, community organizations, clinicians, educators, and policy makers who all said it was challenging for children with multiple disabilities and their families to find information about inclusive sports and leisure programs in their communities. This discussion led to the idea of creating an app that would provide easy access to a central list of fun resources specifically designed for children with disabilities.

Prof. Shikako and her team went to work and developed a prototype that was presented at a 鈥淗acking Health鈥� event held in Montreal in 2014. They called the prototype Jooay, a combination of 鈥渏ouer鈥� in French and 鈥減lay鈥� in English.

At the beginning, Jooay listed about 200 activities in Quebec and attracted a few users, mostly patients and family members who learned about the app through public engagement activities organized by the researchers. The app was later expanded into five provinces, listing around 1,000 activities, including the baseball program that Kirsti鈥檚 family found in Red Deer in 2016.

In 2018, the Jooay team launched a second version of the app with support from听, one of the pan-Canadian chronic disease networks funded under Canada鈥檚 Strategy for Patient-Oriented Research (SPOR), administered by CIHR. Today, Jooay lists nearly 4,000 activities, reaching over 4,000 active users in all provinces and territories.

Since the early stages of Jooay, parents, youth and families have been part of the core research team, developing Jooay into a product that is truly useful for children and youth with disabilities. 鈥淲e are always close to our partners, and our results are always responsive to their voices,鈥� says Prof. Shikako.

One of these voices has been Gillian Backlin, a 27-year-old youth partner with a disability, who became part of the Jooay team to help improve accessibility in the development and expansion of the app. 鈥淔inding leisure and the ability to play is very important and should be accessible to everyone, so Jooay is a huge step in the right direction,鈥� says Gillian.

As a youth partner, Gillian has enjoyed voicing what matters most to youth in her community. 鈥淚鈥檓 continuing to find my voice as an advocate for my community,鈥� she says. 鈥淚 have really appreciated the opportunity to have a voice as it matters to me personally and helps me pursue my goal to promote visibility, equality and equity for the people with disabilities.鈥�

Making a difference

Prof. Shikako and her team are reassured that they are on the right path every time parents tell her they found an activity for their children or when physicians or teachers recommend Jooay to families looking for inclusive resources. 鈥淚t鈥檚 also rewarding to hear from children with various disabilities that they are so happy to learn about the app,鈥� she says.

The expanded version of Jooay is so popular that the Canadian Public Health Association has recently listed Jooay as听. At the United Nations Conference of the States Parties on the Convention on the Rights of Persons with Disabilities held in 2019, Canada鈥檚 representatives cited Jooay as one of the actions taken in Canada to advance inclusive societies for children with disabilities.

Prof. Shikako is aware that her team still has a lot of work to do to continue improving the app and finding creative solutions to increase access to resources and activities for children with disabilities. 鈥淚f we consider that approximately 800,000 children in Canada have some form of disability, we have a lot more families to reach,鈥� she adds.

To reach that goal, the team of researchers, developers, patient and parent partners, and clinicians are also collaborating on other research projects. Prof. Shikako鈥檚 research team is currently studying what makes communities inclusive and recently published the听.

With the team鈥檚 experience with Jooay, the researchers are also examining how the development and design of inclusive technologies can help youth with multiple disabilities improve their health outcomes.

Since returning to Fort McMurray with her family in 2016, Kirsti and her sons have worked with the Jooay team to help refine the app and make it more fun and engaging for users. The experience has even sparked an interest in her oldest son to become a youth partner in research.

鈥淛ooay did more than help us find inclusive and fun activities for my sons,鈥� says Kirsti. 鈥淚t connected us to a wonderful community.鈥�

Join the Jooay community

Jooay is a growing community. Visit the听听to download the app, available in both French and English, and suggest new sports and leisure activities for children with disabilities. You can also meet a Jooay ambassador in your province or become an ambassador yourself.

Read more听听stories.

This story was originally published on the听.