gms | German Medical Science

Background: Challenges of the COVID-19 pandemic are particularly pronounced in the field of nursing, and even more so in the field of palliative and hospice care. Patients in these settings are not only particularly vulnerable to a severe course of COVID-19. Also measures necessary to contain the spread of SARS-CoV-2 may affect the very act of providing health care itself, thus creating social and ethical dilemmas. These need to be addressed through appropriate, flexible and diversity-sensitive approaches and policies.

Research question and objective: Using a qualitative approach, the aim of the present study was to examine how relatives of people receiving palliative care perceive measures and strategies which providers of long-term, palliative and hospice care have adopted to address the COVID-19 pandemic.

Method: 10 problem-centred interviews were conducted with relatives via telephone/online audio calls (instant messenger services). Of these, eight were female and two were male. Study participants were between 30 and 75 years old and were recruited through collaborative partners and through palliative care social media groups. Interviews were supported by a topic guide. For the anonymized analysis using qualitative content analysis according to Mayring, a code tree consisting of main and sub-categories was created, deductively derived from the thematic blocks of the topic guide and inductively supplemented by further relevant categories from the data.

Results: Nine categories were identified in the data. Contact restrictions during the COVID-19 pandemic affect health care provision of people receiving palliative care. There are specific policy differences between nursing/palliative care facilities and hospices in managing the SARS-CoV-2 pandemic, especially in terms of the restrictions placed on visitor policies. Relatives differ in their perceptions of existing measures with regard to the type of facility. Visitor policies at the end of life of patients remain limited to the immediate family and affect the mental well-being of patients and their relatives.

Discussion: On the one hand, social distancing is indeed one of the most successful measures to contain the pandemic and to protect patients. On the other hand, social distancing as a measure of infection control and pandemic management may also lead to isolation, thus placing an additional burden on both patients and their families which must be addressed by appropriate support measures.

Practical implications: The findings of the qualitative study provide insight into how family members of people receiving palliative care in nursing, palliative care and hospice facilities perceived the prevention and containment measures employed by health care providers to address the COVID-19 pandemic. These findings can inform the formulation of recommendations on how challenges of pandemics and other public health crises can be addressed in order to ensure the provision of patient-centered health care.

Appeal for practice (science and/or care) in one sentence: Pandemic response requires measures that take patient-centered health care into account.