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Samenvatting
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The COVID-19 crisis may seriously affect the experience of death and dying of patients, relatives and health care professionals. Whereas the COVID-19 epidemic will probably continue for months or even years and is unlikely to be the last epidemic 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 and their relatives on the other.

 

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 for relatives during the COVID-19 pandemic

3. to early identify complicated grief of bereaved relatives and associated factors

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

6. to timely and continuously disseminate and communicate findings of this project in collaboration with end-users

 

We will perform an open online longitudinal survey study in which respondents are asked to share their experiences with end-of-life care for a recently deceased person. Respondents are invited to fill in questionnaires at baseline and after 4, 8 and 13 months, and to participate in complementary in-depth interviews.

 

The results of the questionnaires and interviews will at regular intervals be presented to an expert group of end-users, who are asked to advise on how to translate the findings into guidance for clinical practice.

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