Barriers to and Facilitators of Family Caregiving of Patients With COVID-19 Early in the Pandemic

Author:

Leggett Amanda N.1,Robinson-Lane Sheria G.2,Oxford Grace3,Leonard Natalie4,Carmichael Alicia G.5,Baker Elaina6,Paratore Janeann7,Blok Amanda C.8,Prescott Hallie C.9,Iwashyna Theodore J.10,Gonzalez Richard11

Affiliation:

1. Amanda N. Leggett is an assistant professor in the Institute of Gerontology at Wayne State University, Detroit, Michigan, and an adjunct assistant professor, Department of Psychiatry, School of Medicine, University of Michigan Ann Arbor.

2. Sheria G. Robinson-Lane is an assistant professor, Department of Systems, Populations, and Leadership, School of Nursing, University of Michigan Ann Arbor.

3. Grace Oxford is a research assistant, Biosocial Methods Collaborative, University of Michigan Ann Arbor.

4. Natalie Leonard is a research technician, Research Center for Group Dynamics, Institute for Social Research, University of Michigan Ann Arbor.

5. Alicia G. Carmichael is a research process manager, Research Center for Group Dynamics, Institute for Social Research, University of Michigan Ann Arbor.

6. Elaina Baker is a research assistant, Department of Psychiatry, School of Medicine, University of Michigan Ann Arbor.

7. Janeann Paratore is a research assistant, Biosocial Methods Collaborative, University of Michigan Ann Arbor.

8. Amanda C. Blok is a research assistant professor, Department of Systems, Populations and Leadership, School of Nursing, University of Michigan and a research health scientist, VA Center for Clinical Management Research, Ann Arbor VA Healthcare System, Ann Arbor, Michigan.

9. Hallie C. Prescott is an associate professor, Pulmonary and Critical Care, Department of Internal Medicine, School of Medicine, University of Michigan and a research investigator, VA Center for Clinical Management Research, Ann Arbor VA Healthcare System.

10. Theodore J. Iwashyna is the Bloomberg Distinguished Professor of Social Science and Justice in Medicine and professor of medicine, Pulmonary and Critical Care Medicine, Johns Hopkins School of Medicine, Baltimore, Maryland.

11. Richard Gonzalez is the Amos N. Tversky Professor, Psychology and Statistics and director, Research Center for Group Dynamics, University of Michigan.

Abstract

Background In 2020, many family members were thrust into the role of caregiving for a relative with COVID-19 with little preparation, training, or understanding of the disease and its symptoms. Objectives To explore the barriers to and facilitators of caregiving experienced by family caregivers of patients with COVID-19 who had been in intensive care in the pandemic’s earliest months. Methods In-depth qualitative interviews were conducted by web conference with 16 adults recovering at home after intubation for COVID-19 in an intensive care unit at a major academic medical center and their primary caregivers from March to August 2020 (N = 32). Thematic qualitative analysis was done using Watkins’ rigorous and accelerated data reduction technique with MAXQDA software. Results Seven themes emerged regarding factors that facilitated or posed barriers to care: other health conditions that increased complexity of care, interactions and experiences in the health care system, COVID-19’s proliferation into other areas of life, the psychological well-being of the patient-caregiver dyad, experience of support from the dyad’s network, the role of caregiving in the dyad, and contextual circumstances of the dyad. The themes often included both barriers and facilitators, depending on the experience of the dyad (eg, feeling encouraged vs fatigued by their support network). Conclusions Understanding how patients with COVID-19 and their caregivers experience illness management across the recovery journey can help clarify the COVID-19 care-giving process and identify intervention targets to improve overall health and well-being of the care dyad.

Publisher

AACN Publishing

Subject

Critical Care Nursing,General Medicine

Reference38 articles.

1. Centers for Disease Control and Prevention . Prevalent hospitalizations of patients with confirmed COVID-19, United States: August 1, 2020–February 06, 2022. Accessed August 16, 2022. https://covid.cdc.gov/covid-data-tracker/#hospitalizations

2. Readmission and death after initial hospital discharge among patients with COVID-19 in a large multihospital system;Donnelly;JAMA,2021

3. Race, ethnicity, and 60-day outcomes after hospitalization with COVID-19;Robinson-Lane;J Am Med Dir Assoc,2021

4. Unplanned early hospital readmission among critical care survivors: a mixed methods study of patients and carers;Donaghy;BMJ Qual Saf,2018

5. Identification of factors predictive of hospital readmissions for patients with heart failure;Schwarz;Heart Lung,2003

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