Collaborative Research - Quality Outcomes
Collaborative Research - Quality Outcomes

Self-determination in young adults with IDD

Self-determination for people revolves around the idea of maintaining or improving quality of life through autonomy. Previous literature has identified lower levels of self-determination in individuals with IDD and methods to develop this determination. However, less research looks at how the family structure supports and enables self-determination. One MAPS study looking at how two families promoted self-determination for young adults with IDD found a balance between short- and long-term goals, focusing on a stepwise progression for independence and choice. Read more about these two families and how they built self-determination for the young adults here: https://bit.ly/2vkkREd

CIHR Funding and Dissemination Grant

MAPS researchers received funding through the Canadian Institutes for Health Research (CIHR) Planning and Dissemination Grant – Institute Community Support competition to enhance dissemination and uptake of the international consensus statement on supporting adults with IDD who are frail to a number of different audiences, including adults with IDD; family members; and front-line providers, administrators, decision-makers, and researchers in the field of IDD. Funds will be used to further develop knowledge translation (KT) products and tools to facilitate the uptake of the consensus statement recommendations. See information about CIHR funding decisions here: https://bit.ly/1QNcXbe, and the consensus statement here: https://bit.ly/2T4oND8

Canadian Frailty Network’s 2018 Catalyst Grant

MAPS researchers received funding through the Canadian Frailty Network’s 2018 Catalyst Grant Competition to promote intersectoral collaboration to support frail older adults with IDD in the community. Building on a successful program of research on frailty, Drs. Lynn Martin and Hélène Ouellette-Kuntz will work with frail adults with IDD, family members, and providers in the developmental services and home care sectors to identify key elements for effective collaboration and partnership. Through an in-depth case study involving interviews and document review, successful strategies for intersectoral action to support frail adults with IDD in the community will be identified, and related “Call to Action” resources will be produced.

Segmentation as a Planning Tool

Segmentation has been traditionally used as a marketing tool to understand the wants and needs of specific consumer groups and allow service providers to create targeted implementation strategies. While segmentation has been used in other health areas to help target interventions, in this paper, Klag and Ouellette-Kuntz adapt the approach to create an understanding of the support needs of two Canadian subgroups: autism spectrum disorder and intellectual disability. Read how here: https://bit.ly/2Qd8030

Impact of Interventions on Primary Care

Efforts in Ontario since 2006 to improve the provision of primary care to adults with IDD were the focus of a recent study led by Hélène Ouellette-Kuntz. The authors compared preventive care provided through primary care to adults with IDD aged 40-64 from 2003 and 2016 to determine any impact the interventions had. While a small increase in provision for preventive care was seen for men, no change was seen for women, suggesting a small population-level impact. Read the full methodology and the authors’ recommendations for future research here: https://bit.ly/2pK6XZz.

Global Prevalence of Intellectual Disabilities

After a 2009 study reported that about 1% of the global population was affected by an intellectual disability, a systematic review conducted by MAPS sought to update this statistic with recent studies. While researchers found that there was a global interest in understanding the prevalence of intellectual disabilities and a potential lower occurrence than originally reported in 2009, differences in measurements, definitions, and case reporting between the studies prevented strong comparisons to be made. Read more about the details of the study, plus the findings on the incidence of intellectual disabilities, here: https://bit.ly/2RgmmNG

Revision to HSO IDD Standards

After 16 months of consultation with patients and families, experts and policy makers, Health Standards Organization (HSO) releases its revised IDD standard. MAPS researchers Hélène Ouellette-Kuntz and Lynn Martin contributed to this work. Read more here: http://bit.ly/2Ape2W0

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