Abstract
Background: 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 population-based 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.
| Original language | English |
|---|---|
| Article number | 30 |
| Journal | BMC Neurology |
| Volume | 13 |
| DOIs | |
| Publication status | Published - Mar 21 2013 |
Bibliographical note
Funding Information:This study is part of the National Population Health Study of Neurological Conditions. We wish to acknowledge the membership of Neurological Health Charities Canada and the Public Health Agency of Canada for their contribution to the success of this initiative. We would also like to acknowledge the many research assistants who have been and continue to be instrumental in the day to day work of the study, particularly the monthly phone calls. Funding for the study was provided by the Public Health Agency of Canada. The opinions expressed in this publication are those of the authors/ researchers, and do not necessarily reflect the official views of the Public Health Agency of Canada.
ASJC Scopus Subject Areas
- Clinical Neurology
PubMed: MeSH publication types
- Journal Article
- Research Support, Non-U.S. Gov't
