Maintaining control: A qualitative study of being a patient in need of specialized palliative care during the COVID-19 pandemic

Abstract Being a patient in need of specialized palliative during the COVID-19 pandemic is challenging. Governments around the world have reduced the available health care services as well as restricted in-person meetings between patients, health care professionals, and relatives. The aim of this study was to explore the experiences of patients with specialized palliative care needs during the period of restrictions requiring social distancing due to the COVID-19 pandemic. The analysis of this qualitative study was guided by a grounded theory approach. The participants were patients living in their own homes who were being treated by the outpatient clinic palliative care unit at the Herlev and Gentofte University Hospital in Denmark. Participants’ main concern was maintaining control during the pandemic. They achieved this by aiming to secure a meaningful life by remaining occupied during the day, balancing social contact, contemplating the reopening of society, and seeking help from health care professionals. Participants were concerned about losing control and this concern increased with the reopening of society. Health care professionals must ensure that they provide support and care for patients with specialized palliative care needs when societal restrictions change.