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May 2020

Wellness for people with intellectual and developmental disabilities

At a glance
The team

Professor Shahin Shooshtari, Lead investigator, Community Health Sciences, University of Manitoba; Juliette Mucha, Director, St.Amant Foundation; Margherita Cameranesi, Ph.D. candidate, Mitacs Accelerate intern; St.Amant clinicians and senior managers including Joanne van Dyck, Janice Ranson, Sheila Chatyrbok, and Peter Duff; Drs. Javier Mignone and Depeng Jiang, Community Health Sciences, University of Manitoba.

The challenge

To evaluate the health status and quality of life of people with intellectual and developmental disabilities that have transitioned from residential care facilities to family and agency-supported homes.

The solution

Conducting a longitudinal study to record and compare health and quality of life data pre- and post-transition, and over time.

The outcome

One of the first studies to provide a complete look at the process of community transitions, and the outcomes in terms of any potential enhancement in community involvement, quality of life, and access to healthcare and social services for the target population.

What’s next?

Seek input from community agencies who are supporting the study participants and their families on how the transition process could be improved, and measure the long-term effects of community transitions on health and quality of life.

A collaborative research project supported by Mitacs is contributing to enhance St.Amant’s community transitions by documenting and evaluating their impact on health and quality of life of persons with severe intellectual and developmental disabilities.

St.Amant, located in Manitoba, supports nearly 2,000 children and adults with intellectual and developmental disabilities and autism. In 2014, the St.Amant Foundation launched their Community Transitions program through which they offer community living options to people living at the residential care facilities administrated by St.Amant. While this transition enables them to live a full and active lifestyle in their communities, there was no study to actually assess what this means for their health and quality of life.

With the goal of expanding the knowledge in this area and enhancing the community transition program, St.Amant partnered with Mitacs and the University of Manitoba (U of M) to conduct a collaborative research study. The project is led by U of M’s Professor Shahin Shooshtari and counts on her graduate student and Mitacs Accelerate intern Margherita Cameranesi, who is responsible for documenting and evaluating the outcomes of this evidence-informed approach.

Skills to work with community transitions research

Professor Shooshtari saw that Cameranesi had many of the qualities — excellent communication and research skills, a motivated learner, and an independent researcher — that she was looking to invite into the work with the community transitions research study. As this project involved qualitative and quantitative components with a focus on a vulnerable population, Shooshtari also acknowledged that Cameranesi was a very sociable, kind, and caring person — all qualities needed for this project.

Originally from Italy, Cameranesi is an international student and doctoral candidate in U of M’s Applied Health Sciences program. She is a clinical psychologist, with several years of clinical, research, and teaching experience, and plans to pursue a career in academia.

When asked what she enjoyed the most about this project, Cameranesi highlighted meeting the study participants during the data collection process, collaborating with staff at the community partner agency, and the outstanding mentorship from Shooshtari.

“Knowing how transitioning to community living affects the health and quality of life of persons with intellectual and developmental disabilities will inform the creation of future community transition plans and policies in our jurisdiction and abroad,” says Cameranesi.

Developing resources to benefit a wider community

One of the main objectives of this research project includes documenting, evaluating, and sharing the lessons learned for the benefit of a wider audience. Cameranesi is working on developing user-friendly products that will be helpful for individuals, families, administrators, and policymakers at both local and provincial levels.

Cameranesi notes that she is grateful to have the opportunity to practice knowledge translation since “this is an aspect of the research process that is too often overlooked in academic training.”

For her, translating scientific knowledge into simple, non-technical language involves creativity and dedication.

“Before my Mitacs internship, I had never developed user-friendly knowledge translation products directed to a non-academic community; I was very pleased to have the opportunity to improve my skills in this aspect of the research process.”

Valuable experience for both intern and industry

The opportunity to work in an interdisciplinary team and in collaboration with the community partner has also helped Cameranesi to improve her knowledge both in the operations and processes of the agency, and in the field of intellectual and developmental disabilities. Even being an experienced clinical professional, she has gained a variety of in-demand skills in the research process, and in delivering presentations to relevant stakeholders.

Shooshtari noted that such partnerships help organizations like St.Amant to meet their research needs at a more affordable cost by including interns who are supervised by seasoned researchers. For the Mitacs-funded interns, they have the opportunity to become highly qualified employees, potentially even with the partnering organization.

“I highly recommend Mitacs’s internship programs to other researchers and community partners as they help foster research and train highly qualified personnel in the areas of need and in a very meaningful way,” concludes Shooshtari.

According to Juliette Mucha, Director of St.Amant Foundation, the partnership between the not-for-profit organization and U of M has led to a broader understanding of both the challenges and opportunities related to community transitions. The partnership provides mutual benefits and builds capacity by enhancing the knowledge and skills of the research interns, and by sharing the knowledge, skills, tools, and resources that the research team brings to the organization.

“The comprehensive database created is the first of this kind in Manitoba and Canada,” says Mucha.

“With the continuation of the study, health and quality-of-life data collected can be used to better support these vulnerable individuals living in the community as they age.”

Mitacs thanks the Government of Canada and Research Manitoba for their support of the Accelerate research internship in this story. Across Canada, the Accelerate program also receives support from the Government of British Columbia, the Government of New Brunswick, the Government of Newfoundland and Labrador, the Government of Nova Scotia, the Government of Ontario, Innovation PEI, the Government of Quebec, and the Government of Saskatchewan.

Do you have a business challenge that could benefit from a research solution? If so, contact Mitacs today to discuss partnership opportunities: