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care transitions, COVID-19, end-stage heart failure, family caregivers



  1. Cross, Lisa A. PhD, RN, CNE, CRRN, CHPN
  2. Koren, Ainat PhD, DNP, PMHNP
  3. Dowling, Jacqueline S. PhD, RN, CNE (Ret.)
  4. Gonzales, Joseph E. PhD


Before the COVID-19 pandemic, family caregivers were providing a tremendous amount of care for family members with heart failure with the prevalence of caregiver reliance in heart failure expected to increase in the United States. Social distancing and other restrictions during the COVID-19 pandemic may have added further challenges to caregiving routines. The purpose of this study was to examine the family caregiver perception of the effect of COVID-19 on caregiving routines. To determine caregiver perception of COVID-19's impact, 1 Likert question and 1 open-ended response were asked. Braun and Clark's method guided open-ended response thematic analysis. The 113 replies to the open-response question yielded themes such as social isolation, added fear, anxiety, or worry, changed appointments, wearing masks, and living status change. Social isolation (41.6%) was the most common theme; the most significant theme was living status change (P = .003), and family caregivers reported that the pandemic affected their routines either negatively or somewhat negatively (62.1%). Family caregivers are affected during times of crisis. Research and policies that recognize the residual effects of COVID-19 on caregiving practices and support care transitions for family caregivers in the heart failure population are needed.