Collaborative Research - Quality Outcomes
Collaborative Research - Quality Outcomes

Dr. Virginie Cobigo and her team are working on an innovative transdisciplinary research and development project (WP8.3 PRIV-SENSE). The aim is to study ethical factors that arise during the development, commercialization, diffusion and adoption of a technology, which assists in the safe use of medications among aging persons with intellectual and developmental disabilities (IDD) and their caregivers. Alongside interviews with relevant stakeholder groups (i.e., healthcare professionals and policy makers) and monitoring data via meeting notes and the researcher’s diaries, this inclusive project engages 6 aging persons with IDD who attended 5 focus groups. During the focus groups, the participants helped the technology developers identify the required features and functionalities of the proposed technology application, and test the prototype. Currently, research data is being analyzed and important insights on the ethical issues related to technology adoption and development for/by aging persons with IDD are expected.  A first article was accepted and is to be published in the fall of 2017 in the journal of “Ethics and Behaviour”. It explores privacy protection behaviours and attitudes of aging persons with IDD when using information technologies. This 5-year project is funded by AGE-WELL NCE- a national research network in technology and aging, with a span of 25 universities and research centres across Canada, and more than 80 industry, government, and not-for-profit partners.

Clarabelle Lee, an undergraduate student in Life Sciences at Queen’s University, has joined the Aging Project team. Her thesis project entitled “Assessing frailty in adults with IDD to improve care planning” will be conducted at Ongwanada.

H-CARDD Aging Project reports a higher occurrence of frailty among adults with IDD compared to adults without IDD (9% vs 3%). Women, older adults, and adults with mental illness or addiction were more likely to be frail. See the full study here.

On June 23rdMAPS will be presenting a poster on the case of parents of adults with IDD in Ontario at the SCRA Biennial Conference in Ottawa. Visit the conference website for details:

Dr. Hélène Ouellette-Kuntz and Dr. Lynn Martin will work with OPADD, Reena and Mary Centre on a MCSS Modernization Grant. This project will put into practice their research on aging and frailty with IDD through a pilot of the frailty index (

We are pleased to announce that Dr. Hélène Ouellette-Kuntz and Dr. Lynn Martin have officially joined Health Standards Organization (HSO) as members of the Developmental Disabilities Technical Committee.

They will help drive the standards development process and ensure that all points of view relating to a standard revision are represented. This HSO Technical Committees includes an individual with a disability, families, service providers, and researchers. For more information:

Helene Ouellette-Kuntz will be holding a workshop on supporting frail adults with IDD in Belfast, Ireland this June. Conference details can be found here:

Parents caring for an adult child with an IDD as well as another family member (compound caregiving) experienced greater perceptions of burden and family distress. As this negatively influences family functioning, compound caregiving must be included as part of caregiving assessments. See the full study here:

Interviews with key informants from two research teams who have developed frailty measures were conducted to learn about implementation. One measure is used in practice, although neither measure was applied to support policy-making. See the full MAPS study here:

A recent study led by Hélène Ouellette-Kuntz presents two epidemiological approaches to estimate changes in the size of the older adult population with IDD in Ontario. Both methods project an increase. One method suggests a moderate increase (20.5%) while the other method suggests a small increase (4.1% to 8.4%). Full study available here:

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