title: The everyday experience of living with and managing a neurological condition (the LINC study): study design.
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
  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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: School of Occupational Therapy, Dalhousie University, 5869 University Avenue, 215 Forrest Building, PO Box 15000, Halifax, NS B3H 4R2, Canada. jversnel@dal.ca
authors.forename: Joan
authors.initials: J
authors.lastname: Versnel
authors.forename: Tanya
authors.initials: T
authors.lastname: Packer
authors.forename: Lori E
authors.initials: LE
authors.lastname: Weeks
authors.forename: Jocelyn
authors.initials: J
authors.lastname: Brown
authors.forename: Marshall
authors.initials: M
authors.lastname: Godwin
authors.forename: Susan
authors.initials: S
authors.lastname: Hutchinson
authors.forename: George
authors.initials: G
authors.lastname: Kephart
authors.forename: Diane
authors.initials: D
authors.lastname: MacKenzie
authors.forename: Kerstin
authors.initials: K
authors.lastname: Roger
authors.forename: Robin
authors.initials: R
authors.lastname: Stadnyk
authors.forename: Michelle
authors.initials: M
authors.lastname: Villeneuve
authors.forename: Grace
authors.initials: G
authors.lastname: Warner
mesh_terms: D000203:Activities of Daily Living; D000223:Adaptation, Psychological; D000293:Adolescent; D000328:Adult; D000368:Aged; D002170:Canada; D002648:Child; D015331:Cohort Studies; D018672:Community Health Planning; D005260:Female; D006304:Health Status; D006306:Health Surveys; D006801:Humans; D008297:Male; D008875:Middle Aged; D008960:Models, Psychological; D009422:Nervous System Diseases / Q000175:diagnosis* / Q000523:psychology*; D012648:Self Care; D011795:Surveys and Questionnaires; D055815:Young Adult