Policy court: Where participation, policy and research meet at the MALL - PowerPoint Presentation

1. Policy court: Where participation, policy and research meet at the MALLKeiko Shikako-Thomas, PhD, OT1,2,3Canada Research Chair in Childhood Disability: Participation and KTAnnahita Ehsan, MSc1Tiiu Poldma, PhD1,4Daniel Weinstock, PhD31 McGill University School of Physical & Occupational Therapy2 CRIR – Centre de réadaptation MAB-Mackay du CIUSSS du Centre-Ouest-de-l’Îie-de-Montréal3 McGill Institute of Health and Social Policy4 Université de Montréal

2. IntroductionResearch can change clinical practice = Evidence-based practiceBUT…Can research also change policy? = Evidence-informed policymaking Integrating stakeholders in research is key for improved research uptake (CIHR)Decision-makers are often not involved in rehabilitation research (Camden, Shikako-Thomas et al., 2014)Researchers often do not know how to involve policymakers in research (Shikako-Thomas, Law, submitted; Constrandiopolous, 2011)

3. MALL (Mall as a Living Lab)Vision: to create an inclusive environment fostering participation for all especially those with physical disabilitiesUsing a shopping mall as a platform to foster social and research innovation

4. Researchers, partners and collaboratorsÉtablissements de réadaptationPartenairesUniversitésPIs: E. Kehayia(McGill), B. Swaine (Université de Montréal)Co-investigators : T. Poldma (UdeM), S. Ahmed ( McGill), J. Fung (McGill), G. Le Dorze (UdeM), Hélène Lefebvre (UdeM), D. Kairy (UdeM), A. Lamontagne ( McGill), P. Archambault (McGill)+Communauté de pratique:OPHQVille de MontréalOrganismes diverses, entre autres

5. ObjectivesTo identify policy actionable points within the MALL project.To identify policies that can have an impact on participation at the mall, and relate to projects' outcomes.To develop a KT framework for rehabilitation research to inform policy, and for policy to inform research using the MALL context.

6. MethodsParticipatory Action ResearchPolicy analysis of published outcomes of research projects Project aims informing "non-clinical" outcomes, such as changes in the physical and social environments as opposed to changes at the individual level.Qualitative methodologyIn-depth interviewsFocus groupThematic analysis

7. MethodsUnited Nations Convention on the Rights of Persons with Disabilities (UN CRPD)Quebec Chapter E-20.1: Act to secure handicapped persons in the exercise of their rightsPriorities from the Office des Personnes Handicappés Quebec (OPHQ), À part entière Social Determinants of Health in Canada

8. Methods Focus groupIndividual in-depth interviewsThematic analysisOpen-ended questions:What were the ways that researchAnd policy have collaborated?What you wish had happened?How?Processes, gaps and opportunities for research / policy collaborations

9. Policy frameworks:UN CRPD: Relevant Points from ArticlesArticle 4: General obligations Article 7: Children with disabilities Article 8: Awareness raising Article 9: Accessibility Article 19: Living independently and being included in the community Article 20: Personal mobility Article 21: Freedom of expression and opinion, and access to information Article 26: Habilitation and rehabilitation Article 30: Participation in cultural life, leisure, and sport

10. Policy Frameworks:Quebec Chapter E-20.1B- Empowerment of persons with disabilities and their participation in decisions concerning them, as well as managing some of the services that they receiveC - Give priority to the resources/ services of disabled people in their natural environments D - Promote the adaptation of the environment to the needs of persons with disabilities E - Ongoing coordination and management for the maximum integration of services F - Achieving quality of life and full participation for persons with disabilities, with protection against risk factors for impairment

11. Policy Frameworks:OPHQ: A Part EntièreAction against discriminationAction against violence (action against exploitation, violence, and abuse of any form) Familial social support (support familial and social roles within families) Diversity of disability (take into account the diversity in disability, as well as the families affected and the situation of each individual) Accessible environments (development of accessible environments) More generalized services (Have more generalized planning, individualizes, and coordinated services) Access to services (increase access and improve coordination of services) Structured accompaniment (Make structured accompaniment services available to persons with disabilities and their families)Familial social support (support familial and social roles within families)

12. Social Determinants of HealthLevel of Social Determinant Environmental Factors Social and community networks Individual lifestyle Social DeterminantHealth servicesSocial safety networkSense of efficacyDisability experiences EducationIncome and income distributionSocial exclusionHousingUnemployment and job securityDisabilityRaceGenderAboriginal status

13. ResultsStakeholder RoleNFederal Decision Maker1Municipal Decision Maker1Activist/ Non-Governmental Organization5Researchers 14Transport representative2MALL Cominar staff2Persons with disabilities 411 projects selected as having policy implications25 participants 6 Individual interviews 19 stakeholders in focus group

14. Project Personalized accompaniment for the community integration of persons with Traumatic Brain Injury (Lefebvre et al, 2011/12)Project Aims (1) Secondary analysis of research into effects of a personalized accompaniment for community integration for patients with TBI, designed to determine what individuals with TBI experience in public places. UN CRPDGeneral obligations. Accessibility, Living independently and being included in the communityQuebec E-20.1C, F, BOPHQ Priorities Diversity of disability, Develop access to services, structured accompaniment, Increase accessSDH ExamplesDisability, sense of efficacy, social exclusion, (aboriginal status, race, gender)Level of SDHEnvironmental factors, social/ community networks, individual lifestyleResults: Examples of Projects selected

15. ProjectUnderstanding people's needs in a public space such as a commercial mall (Poldma et al, 2011/12)Project Aims1) Provide metrics in terms of physical spatial characteristics of a specific commercial mall such as Place Alexis Nihon. (First phase of 3 part project aimed at understanding the physical, social, and psychosocial needs of commercial mall users.)UN CRPDGeneral obligations Accessibility, Living independently and being included in the community, personal mobilityQuebec E-20.1C, DOPHQ Priorities Develop accessible environments, increase access SDH ExamplesSense of efficacy; disabilityLevel of SDHEnvironmental factorsResults: Examples of Projects selected

16. ProjectExploring the effects of a training program for shopping center employees who interact with persons living with functional limitations (Rochette et al, 2012/13) Project Aims(1) Explore impact of a training specifically targeted at welcoming people with functional limitations on the employees knowledge and perceived self-efficacy in a shopping center UN CRPDGeneral obligations, Awareness raising, Living independently and being included in the communityQuebec E-20.1C,E,OPHQ Priorities Action against discrimination, action against violenceSDH ExamplesDisability, sense of efficacy, social exclusionLevel of SDHSocial/ community networks, individual lifestyleResults: Examples of Projects selected

17. Results: Qualitative Analysis Individual interviews (N=6)Focus group (N=19 participants)Representing: policy makers at municipal and federal levels, mall administration, MALL researchers, community organizationsKey open-ended questions:How has research and policy interacted at the MALL?What are potential venues and ways to better communicate research and policy in the MALL context?Interviews transcribed verbatim and coded using NVivo10

18. Results: Qualitative Analysis CommunicationFinancial and admin constraintsKey players

19.

20. "There were 50 researchers each talking for themselves. So, there was nothing. Uh, yeah. What was done interdisciplinary. And then I looked in all the 50 researchers, and there was no where perspective from the disabled” (Researcher, MALL board)“Policy changes are like pieces of a puzzle, you need to understand which pieces are for you to move, and where other people should pick up from” (Policy researcher, external to MALL project)I would mention […] for example, strips or ramps or this and that, a lot of them [people with disabilities] wouldn’t think about it automatically, but if you ask them, you know, would this be helpful for you? […] it may not be part of their reality as much as it a part of our reality, but I think that once they’re aware of it it would make an impact on them too (MALL user)"You should start extract and disseminate information to the elected municipal official, citizens group so that when time comes they can make decisions based on this information” (policy maker)

21. Influencing policy

22. Conclusion

23. ConclusionParticipation for individuals with disabilities at the MALL and other public spaces could be facilitated by:public-private partnerships More than universal accessibility codes –rights-based approaches Training for staff and public awareness about the particular needs of individuals with disabilities2. Researchers should engage with “decision and policy” partners from start 3. Next: interventions towards policy impact

24. AcknowledgementsDelphine Labbé,Research SupportFunding for this project was obtained through a CRIR – Living Lab postdoctoral fellowship