“We Are Saving Their Bodies and Destroying Their Souls.”: Family Caregivers’ Experiences of Formal Care Setting Visitation Restrictions during the COVID-19 Pandemic

ABSTRACT

This study aims to explore the experiences of family caregivers during the COVID-19 pandemic-imposed visitation restrictions at formal care settings (FCS) such as assisted living centers and traditional nursing homes. Participants (N = 512) were recruited from an international caregiving social media site that was developed at the beginning of the COVID-19 pandemic. Descriptive data was collected on the family caregivers, the care recipient and facility. Respondents also provided a single feeling word describing their experience and an open-ended question allowed for further exploration. Caregivers were predominantly daughters (n = 375). The most common reported feeling words were sadness (n = 200), trauma (n = 108), anger (n = 65), frustration (n = 56), helplessness (n = 50), and anxiety (n = 36). Thematic analysis revealed four overarching themes: 1) isolation 2) rapid decline 3) inhumane care and 4) lack of oversight. This study highlights the importance of addressing the mental, emotional and physical needs of both care recipient and family caregiver during this challenging time. Caregiver visitation policy reform that includes the care recipient and family caregiver is also discussed.

KEYWORDS:

• COVID-19
• family caregiver
• visitation
• restriction
• formal care setting
• isolation
• stress

Acknowledgments

The authors of this paper would like to thank the members and administrators of the Caregiver for Compromise … .Because Isolation Kills Too FB group for their willingness to share their stories with the authors and facilitate recruitment of others.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

The authors received no financial support for the research, authorship, and/or publication of this article.