title: The relationship between caregiver impacts and the unmet needs of survivors of stroke.
abstract: BACKGROUND
  Caregivers play a crucial role in meeting the needs of survivors of stroke. Yet, little is known about how they are impacted by their caregiving role.
  
  
  OBJECTIVE
  To describe the relationship between survivor long-term unmet needs (>12 months) and caregiver impacts, and identify characteristics that are associated with reported moderate to severe impacts on caregivers.
  
  
  METHODS
  This was a cross-sectional survey using data from the Australian Stroke Survivor and Carer Needs Survey. Community dwelling adults 12+ months poststroke and their caregivers participated. Caregivers and survivors were asked about the extent to which the domains of work, leisure and family, and friend and spousal relationships had been impacted using a Likert scale of responses. The extent to which survivor needs were being met was measured over the domains of health, everyday living, work, leisure, and finances, and the total number of unmet needs was calculated. The association between survivor unmet needs and caregiver impacts was assessed using multivariable logistic regression adjusted for caregiver and survivor characteristics.
  
  
  RESULTS
  Of the 738 completed survivor surveys, 369 contained matched caregiver data (survivors: median age, 71 years; 67% male) (caregivers: median age, 64 years; 26% male). For caregivers, the domains of work, leisure, and friendships were most impacted. The odds of a caregiver experiencing moderate to extreme impacts increased with the number of reported survivor unmet needs. This was greatest for spousal (aOR [adjusted odds ratio]: 1.14; 95% CI [confidence interval]: 1.07, 1.21; P<0.001) and friend relationships (aOR: 1.14; 95% CI: 1.07, 1.21; P<0.001). Caring for a survivor who needed daily living assistance was associated with moderate to extreme caregiver impacts across all domains.
  
  
  CONCLUSIONS
  Caregivers of survivors of stroke experience large negative impacts, the extent to which is associated with survivors unmet needs. Targeted, long-term solutions are needed to support survivors and caregivers living in the community.
authors.affiliation: Translational Public Health and Evaluation Division, Stroke and Ageing Research, School of Clinical Sciences at Monash Health, Monash University, Clayton, Australia.
authors.forename: Nadine E
authors.initials: NE
authors.lastname: Andrew
authors.affiliation: Translational Public Health and Evaluation Division, Stroke and Ageing Research, School of Clinical Sciences at Monash Health, Monash University, Clayton, Australia ; Florey Institute of Neuroscience and Mental Health, Heidelberg, Australia.
authors.forename: Monique F
authors.initials: MF
authors.lastname: Kilkenny
authors.affiliation: National Stroke Foundation, Melbourne, VIC, Australia.
authors.forename: Rebecca
authors.initials: R
authors.lastname: Naylor
authors.affiliation: Translational Public Health and Evaluation Division, Stroke and Ageing Research, School of Clinical Sciences at Monash Health, Monash University, Clayton, Australia.
authors.forename: Tara
authors.initials: T
authors.lastname: Purvis
authors.affiliation: Translational Public Health and Evaluation Division, Stroke and Ageing Research, School of Clinical Sciences at Monash Health, Monash University, Clayton, Australia ; Florey Institute of Neuroscience and Mental Health, Heidelberg, Australia.
authors.forename: Dominique A
authors.initials: DA
authors.lastname: Cadilhac
keywords: burden; community care; disability; outcomes; support