The relationship between caregiver impacts and the unmet needs of survivors of stroke

Abstract

Nadine E Andrew,1 Monique F Kilkenny,1,2 Rebecca Naylor,3 Tara Purvis,1 Dominique A Cadilhac1,2 1Translational Public Health and Evaluation Division, Stroke and Ageing Research, School of Clinical Sciences at Monash Health, Monash University, Clayton, 2Florey Institute of Neuroscience and Mental Health, Heidelberg, 3National Stroke Foundation, Melbourne, VIC, Australia 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. Objectives: 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. Method: 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. Conclusion: 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. Keywords: outcomes, community care, disability, burden, support