LINC Project
Permanent URI for this collectionhttps://hdl.handle.net/10222/15974
The Living with a Neurological Condition or LINC Project is a national study to learn about the everyday lives of Canadians living with a neurological condition - as they work, go to school, raise families, and participate in their communities.
We want to learn about the supports and resources that make everyday life possible and meaningful for people of all ages.
It is our hope that the findings of this research project will inform service and policy development for people living with neurological conditions across Canada.
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Recent Submissions
Item Open Access Life is not always so simple(2013-05-13) The LINC ProjectA short video speaking to the experience of living with and managing a neurological condition.Item Open Access My Health Tracker(2013-04-29) The LINC ProjectInteractive Health Tracker created by and for people living with a neurological health condition.Item Open Access Living with a Neurological Condition(2013-04-29) The LINC ProjectA short video describing the everyday life experience of two Canadians living with neurological conditions.Item Open Access The everyday experience of living with and managing a neurological condition (the LINC study): study design(BMJ Neurology, 2013) Versnel, Joan; Packer, Tanya; Weeks, Lori; Brown, Jocelyn; Godwin, Marshall; Hutchinson, Susan; Kephart, George; MacKenzie, Diane; Stadnyk, Robin; Villeneuve, Michelle; Warner, Grance; Roger, KerstinBackground: The impact of neurological conditions on individuals, families and society is increasing and having a significant economic impact in Canada. While some economic data is known, the human costs of living with a neurological condition are poorly understood and rarely factored into future burden analyses. The “Living with the Impact of a Neurological Condition (LINC)” study aims to fill this gap. It seeks to understand, for children and adults with neurological conditions, the supports and resources that make everyday life possible and meaningful. Methods/design: The LINC study is a nested study using mixed methods. We are interested in the following outcomes specifically: health status; resource utilization; self-management strategies; and participation. Three studies captured data from multiple sources, in multiple ways and from multiple perspectives. Study One: a populationbased survey of adults (n = 1500), aged 17 and over and parents (n = 200) of children aged 5 to 16 with a neurological condition. Study Two: a prospective cohort study of 140 adults and parents carried out using monthly telephone calls for 10 months; and Study Three: a multiple perspective case study (MPCS) of 12 adults and 6 parents of children with a neurological condition. For those individuals who participate in the MPCS, we will have data from all three studies giving us rich, in depth insights into their daily lives and how they cope with barriers to living in meaningful ways. Discussion: The LINC study will collect, for the first time in Canada, data that reflects the impact of living with a neurological condition from the perspectives of the individuals themselves. A variety of tools will be used in a combination, which is unique and innovative. This study will highlight the commonalities of burden that Canadians living with neurological conditions experience as well as their strategies for managing everyday life.Item Open Access Young Adults(2013-04-29) The LINC ProjectWe spoke with 47 young adults between the ages of 17 and 26 who live with a neurological condition. This Fact Sheet details their experience.Item Open Access Participating in Everyday Life with a Neurological Condition(2013-04-29) The LINC ProjectWorking, going to school, spending time with friends and family, pursuing hobbies and interests, and being part of a community are all ways that we participate in our lives. We talked to over 700 people who were living with a neurological condition. This is what they told us about their participation.Item Open Access Parents of Children Living with a Neurological Condition(2013-04-29) The LINC ProjectWe spoke to parents of 74 children living with a neurological condition. Many of the families share similar experiences, concerns and challenges. This Fact Sheet details their experiences.Item Open Access Living with a Neurological Condition - Strategies to Self-Manage Cognitive Changes(2013-01) LINC StudyThe Living with a Neurological Condition or LINC Project is a national study to learn about the everyday lives of Canadians living with a neurological condition - as they work, go to school, raise families, and participate in their communities. We want to learn about the supports and resources that make everyday life possible and meaningful for people of all ages. It is our hope that the findings of this research project will inform service and policy development for people living with neurological conditions across Canada.Item Open Access Living with a Neurological Condition - Strategies to Self-Manage Mobility Challenges(2013-01) LINC StudyItem Open Access