Familial caregiving following stroke: findings from the comprehensive post-acute stroke services (COMPASS) pragmatic cluster-randomized transitional care study

Barbara J. Lutz, Anna M. Kucharska-Newton, Sara B. Jones, Matthew A. Psioda, Sabina B. Gesell, Sylvia W. Coleman, Anna M. Johnson, Meghan D. Radman, Samantha Levy, Janet Prvu Bettger, Janet K. Freburger, Aileen Chou, Joan Celestino, Wayne D. Rosamond, Cheryl D. Bushnell, Pamela W. Duncan

Research output: Contribution to journalArticlepeer-review

4 Scopus citations


Background: Stroke patients discharged home often require prolonged assistance from caregivers. Little is known about the real-world effectiveness of a comprehensive stroke transitional care intervention on relieving caregiver strain. Objectives: To describe the effect of the COMPASS transitional care (COMPASS-TC) intervention on caregiver strain and characterize the types, duration, and intensity of caregiving. Methods: The cluster-randomized COMPASS pragmatic trial evaluated the effectiveness of COMPASS-TC versus usual care with patients with mild stroke and TIA at 40 hospitals in North Carolina, USA. Of 5882 patients enrolled, 4208 (71%) identified a familial caregiver. A follow-up Caregiver Questionnaire, including the Modified Caregiver Strain Index, was administered at approximately three months post-discharge. Demographics and frequency, duration, and intensity of caregiving were compared between groups. Results: 1228 caregivers (29%) completed the questionnaire. Completion was positively associated with older patient age, white race, and spousal relationship. One-third of the caregivers provided ≥30 hours of care per week and 889 (79%) provided care ≥9 weeks. Average standardized caregiver strain was 21.9 (0–100), increasing with stroke severity and comorbidity burden. Women caregivers reported higher strain than men. Treatment allocation was not associated with caregiver strain. Conclusions: This sample of mild stroke and TIA survivors received significant assistance from familial caregivers. However, caregiver strain was relatively low. Findings support the importance of familial caregiving in stroke, the continued disproportionate burden on women within the family, and the need for future research on caregiver support.

Original languageEnglish
Pages (from-to)436-447
Number of pages12
JournalTopics in Stroke Rehabilitation
Issue number5
StatePublished - 2023

Bibliographical note

Publisher Copyright:
© 2022 Taylor & Francis Group, LLC.


  • Stroke
  • caregiver burden
  • comparative effectiveness research
  • patient engagement
  • pragmatic clinical trial

ASJC Scopus subject areas

  • Rehabilitation
  • Community and Home Care
  • Clinical Neurology


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