Since the COVID-19 pandemic will probably continue for months or even years and is unlikely to be the last pandemic in the world, we need to try to learn from people’s experiences now. The aim of the current study is to support clinical practice in finding the right balance between ensuring that care is safe and addressing major public health interests on the one hand, and providing care that is humane and addressing the needs of dying patients, their relatives and health care professionals on the other hand.
The study objectives are:
(1) To get in-depth insight in the characteristics, barriers and facilitators of high-quality end-of-life care during the COVID-19 pandemic from the perspective of bereaved relatives and healthcare professionals;
(2) To better understand what hampers and facilitates saying farewell and bereavement during the COVID-19 pandemic; and
(3) to early identify complicated grief of bereaved relatives and associated factor
(4) to identify continued distress, diminished work satisfaction and burnout among healthcare professionals and associated factors
(5) to develop guidance and best practices for high-quality end-of-life care while adhering to safety guidelines to prevent further spreading of the virus.
We will perform an open online longitudinal survey study in which respondents (relatives and health care professionals) are asked questions about their experiences with end-of-life care for a recently deceased relative or patient. Respondents are invited to also fill in follow-up questionnaires after 4, 8 and 13 months, and to participate in complementary in-depth interviews. Focus of the follow-up questionnaires and interviews with bereaved relatives is on bereavement, Focus of the follow-up questionnaires and interviews with health care professionals is on their well-being.
The results of the questionnaires and interviews will at regular intervals be presented to citizen and professional experts, who are asked to provide advice on how to translate the findings into guidance for clinical practice.
The main findings of the first round of questionnaires and interviews can be found on the PalZON website.
Study in collaboration with: Erasmus MC, Hogeschool Rotterdam, Universiteit voor Humanistiek, PalZON
APH contact person: Roeline Pasman: hrw.pasman@amsterdamumc.nl
This is an initiative taken by APH researchers as a result of the COVID-19 outbreak. If you have an initiative to be listed as well, please email us: aph@amsterdamumc.nl.
See all APH COVID-19 initiatives