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

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.

Automated summary

This study explores the significance of the COVID-19 pandemic for family caregivers of non-COVID-19 patients. The findings indicate that the pandemic has had a significant impact on family caregivers, causing emotional despair.