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

ABSTRACT

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.

KEYWORDS:

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

Acknowledgments

This research would not have been possible without input from the patients and their family caregivers and the hospitals and clinicians in North Carolina who participated in the study.

Data Availability Statement

The COMPASS study is registered and all study protocols and statistical analysis plans are available at https://www.clinicaltrials.gov (unique identifier NCT02588664). Data, analytic methods, and study materials will be made available to other researchers for purposes of reproducing results or replicating procedures, upon reasonable request to the corresponding accordance with PCORI’s Policy for Data Access and Data Sharing.

Disclosure Statement

This research was supported through a Patient-Centered Outcomes Research Institute Project Program Award (PCORI) (PCS-1403-14532). All statements in this paper, including its findings and conclusions, are solely those of the authors and do not necessarily represent the views of PCORI, its Board of Governors or Methodology Committee. Drs. Duncan and Bushnell have ownership interest in Care Directions. Dr. Duncan is a research advisor for BQ Technologies. All other authors report no conflicts of interest.

Supplementary material

Supplemental data for this article can be accessed online at https://doi.org/10.1080/10749357.2022.2077520

Correction Statement

This article has been corrected with minor changes. These changes do not impact the academic content of the article.

Additional information

Funding

This work was supported by the Patient-Centered Outcomes Research Institute [PCS-1403-14532]