The significance of the COVID-19 pandemic for family caregivers of non-COVID-19 patients in need of specialized palliative care at home: a qualitative study

Abstract

Purpose It is well known that being a family caregiver of a palliative patient in general is rewarding as well as burdensome. The COVID-19 pandemic may have exacerbated this situation. We therefore explored the significance of the COVID-19 pandemic for family caregivers of non-COVID-19 patients in need of specialized palliative care at home. Methods Open-ended, semi-structured telephone interviews were conducted with 15 family caregivers of patients treated by a specialized palliative outpatient unit in a Danish hospital. Interviews were analysed using inductive thematic analysis. Results Four themes concerning the significance of the COVID-19 pandemic were identified: 1) being a family caregiver of a patient whose lifespan is already limited, 2) dealing with the risk of passing on COVID-19 oneself, 3) dealing with the risk of others passing on COVID-19 to the patient at home, and 4) living with modified specialized palliative care. Conclusion The COVID-19 pandemic had a radical impact on some family caregivers causing emotional despair. They feared not only infecting the patient with SARS-CoV-2 to cause an untimely death but also being unable to be there for the patient during hospitalization, especially in the patient’s final days.

Keywords

• family caregivers
• palliative care
• end of life
• covid-19
• lockdown
• denmark