Leasure Activities for Children Living with Disabilities (September 2020 – No 03)
September 2020 Edition (03)
An interview summary with Keiko Shikako-Thomas
Assistant Professor, School of Physical and Occupational Therapye, McGill University
Researcher, CRIR–Lethbridge-Layton-Mackay Rehabilitation Centre, Mackay Site,
CIUSSS West-Central Montreal
I would like to discuss Jooay app as well as some of your public policy research on leisure needs of children with disabilities. First,
What is Jooay?
Jooay is a free mobile and web-based app available on Google play and the Apple App Store. It lists nearly 3000 leisure activities, in all ten provinces and Yukon, which are adapted for children with physical and intellectual disabilities and their families. During the COVID-19 pandemic, we also started listing online activities that can help children with disabilities to keep playing while staying at home! Thousands of Jooay users can locate leisure opportunities close to where they live that match their preferences and suit their needs and abilities. Jooay was launched in Spring 2015 to overcome the lack of access to information about inclusive leisure and to create an online community of support through a mobile-health solution. The app is now also available in Australia through a partnership with a research group there.
We define leisure in the Childhood Disability LINK, as “involvement in activities that we do in our discretionary recreational time, before or after work or other duties. For children and youth, these voluntary activities typically include active-physical activities, social, skill-based, self-improvement or other recreational activities”.
According to Childhood Disability LINK, participating in leisure activities allows children to practice skills, develop their own identity and foster peer relations and friendships. Engaging in leisure activities is important for physical and mental health and well-being and promotes community integration.
Jooay is more than an app providing a much-needed service. It is also a research project with an important knowledge mobilization (KT) component. The Jooay research project is part of the Child-Bright Network, a Strategic Patient-Oriented Research program that unites patients, families, researchers, clinicians, policy makers and other key stakeholders to improve health care systems, practices, and outcomes for children and families.
Who uses the Jooay app?
Anyone looking for information. This includes parents, youth, physical education teachers and rehabilitation professionals. Users can exchange information and also rate and comment on activities. This helps create a community and builds networks around adapted and inclusive leisure opportunities. Jooay also provides a platform for community organisations to disseminate such activities, and for parents to find support and exchange ideas on how to support their child’s participation. It also serves as a repertoire for policy analysis, to identify needs and geographical distribution of inclusive communities.
How did you develop Jooay?
My Ph.D. project examined participation barriers regarding leisure activities for children with disabilities. I created the Jooay app with my colleague, Annette Majnemer. We are both professors at the School of Physical and Occupational Therapy at McGill University and CRIR researchers. The idea was born in consultation with several stakeholders, as part of a CHIR funded project, with a network of stakeholders across Canada (CHILD LeisureNET). More than 200 participants, including parents, youth, rehabilitation professionals, policy makers and community organisation representatives assembled in four different forums to identify practical solutions to promote participation of children with disabilities in leisure and physical activity.
Have you done research on Jooay since its creation?
Since its launch in 2015, our CRIR research lab has conducted several research projects examining different aspects of Jooay. A pilot study was conducted to evaluate how people use and assess information in the app. Another project used a Facebook group to examine parent’s community support issues and needs. In addition, we have mapped the social and economic distribution of Jooay-listed activities in five Canadian cities. Research results show that places with more material deprivation also have fewer leisure activities available. We use these research results to inform policymaking and mobile health development through policy dialogues and many other community-based KT activities.
What other initiatives are you involved with that share research results with decision and policymakers?
We are currently collaborating with le Carrefour action municipale et famille (CAMF). CAMF is a non-profit organisation. The ministère de la Famille of the government of Quebec has given CAMF a mandate to support municipalities and community organisations in implementing family-centered policies and actions coherent with its guidelines.
Our work with CAMF involves improving standards for inclusive and adaptive leisure services with regard to one of its accreditation programs: Municipalité amie des enfants We are also developing tools to help CAMF with its overall mandate and in the development of their accessibility plan. One tool pertains to the implementation of a new accessibility plan for all Quebec municipalities; another measures how inclusive municipalities are for children with disabilities.
Is there a role for the Jooay app in your collaborations with CAMF and municipal partners?
Yes. We would like municipalities to eventually use Jooay to list their adapted and inclusive leisure programs for children with disabilities. Jooay could serve as an essential information hub for different stakeholders.
How does Jooay compare with other apps?
When we released Jooay, it was the first app of its kind! No other apps existed for leisure and children with disabilities. Over the past few years, other apps have been developed for locating physically accessible buildings and environments. Jooay is different because it lists programs like swimming classes, soccer, summer camps, movie theater schedules adapted to children with autism, etc. It is like Trip Advisor or Yelp (laughs), for inclusive leisure for children. Of course, it also includes information about ramps and wheelchair accessibility and cost and requirements. This is useful for parents, clinicians and educators since it helps alleviate the detective work that is often required to identify appropriate activities for their children, students, clients.
Do you think the Jooay app has had a social impact?
Jooay has helped bring to the forefront needs and gaps of children with disabilities on their essential human right to play for policymakers and to the community at large. It has helped identify social and material inequalities regarding the availability of leisure activities, and the inequities that cities and public spaces reinforce. In addition, it may have a positive impact for families and various professionals in their search to find adaptive leisure activities. So far, at least 3000 users have consulted Jooay and found activities that they might otherwise not have known about. I think this is Jooay’s biggest impact.
Are there any challenges in keeping the Jooay app running?
This is a pertinent question. How does one make a mobile app, that was developed from research, sustainable in the long run? It is a very costly endeavour to maintain and we face ongoing challenges to maintain the technology up to date while also responding to research questions and users’ needs. Information needs to be constantly updated and regular maintenance must be done regarding technological aspects and issues. We are not a business so this is challenging. Over the years, funding for the Jooay app has come from various research grants. Presently, the ChildBright Network provides our main source of funding.
Where will your research on the Jooay app take you next?
We want to measure Jooay’s impact on participation at two levels; the user level and at the municipal level. Do people participate more now that they have information? Does having a centralized list of inclusive resources help policy makers identify gaps and improve services? Our goal is to build and expand on existing partnerships in order to influence social policies in a sustainable manner, and for children to have access to information and hopefully participate more as a consequence.
What other research projects are you currently working on that involve public policy?
In policy research it is important to be responsive to what is happening now; to be able to impact change where and when it is mostly needed. In this scenario, I have been working on a research project that is part of my “Canada Research Chair in Childhood Disability: Participation and Knowledge Translation”. It involves analyzing data from public consultations that were held prior to parliament’s approval of the Accessible Canada Act (ACA). I am identifying priorities raised during the ACA consultation process regarding children with disabilities. The objective is to see if, and how, the ACA considered these priorities. In this project, we are also developing an analytical framework to use the United Nations Convention on the Rights of Persons with Disabilities (UN CRDP) to identify public priorities and directions for policies.
A separate project, funded by Employment and Social Development Canada, involves interviewing ACA consultation participants across Canada. This research explores what makes public consultations meaningful, from the perspective of persons with disabilities. Listening to stakeholder voices is important. It allows for the creation, and improvement, of meaningfully informed public policy.
More recently, I’ve been collaborating in multiple grants related to COVID-19: 1) to apply the UN CRPD framework to analyse the COVID-19 policy responses across different countries, 2) to develop a survey in partnership with the World Health Organisation identifying the needs of children with disabilities and their families, and 3) to identify the impact on mental health for children with disabilities.
Interview and text: Spyridoula Xenocostas, Coordinator—Partnerships and Knowledge Mobilization, CRIR at: email@example.com