CO-LIVE project: the impact of the COVID-19 pandemic on death and bereavement (completed)

• Period: 2020-2023
• Status: completed

The corona crisis has many consequences for care, especially care in the last phase of life. It was difficult to say goodbye properly to a loved one. This situation was also complicated for care providers. That is why we wanted to map out how people experienced this situation and what lessons we can draw from it for the future. The aim of this study was to find the balance between safe care and the needs of dying patients and their families.

Description

Relatives and caregivers were asked about their experiences with end-of-life care for someone who died during the COVID-19 pandemic. This was done via online questionnaires and interviews. 

The goals of the research:

• understanding what bereaved families and carers consider high quality end-of-life care during the COVID-19 pandemic;
• understanding of what hinders and facilitates grieving for family members during the COVID-19 pandemic;
• early identification of complicated grief in bereaved families and long-term problems and burnout in caregivers.

The results were translated into practice in the form of guidelines for high-quality and safe end-of-life care.

Researchers

Project leader: Dr Ida Korfage (Erasmus MC).
The project group includes researchers from Erasmus MC, Amsterdam UMC and Rotterdam University. Professor Anne Goossensen is involved on behalf of the University for Humanistic Studies.

Partners

Via Stichting PALZON, Erasmus MC, Amsterdam UMC, LUMC, UMC Utrecht, UMC Groningen, Maastricht UMC, Radboud UMC en Hogeschool Rotterdam are working together. 

(Co-)financiering

ZonMW, COVID-19 Programme

Results

• 10 bevindingen vanuit de eerste golf (pdf, in Dutch), based on 1100 questionnaires and 40 interviews with caregivers and next of kin.
• Booklet for the general public: Achter een masker van verdriet, de verhalen achter de cijfers ('Behind a mask of sadness, the stories behind the numbers')

Also see

• Project page at ZonMW (in Dutch)
• Interview with researchers of Erasmus MC (in Dutch)
• Palliaweb: Meedoen aan onderzoek (in Dutch)
• Booklet recalls suffering from visitation restrictions in care during pandemic
  

Contact

Prof Anne Goossensen, A.Goossensen@UvH.nl.

The corona crisis has many implications for care in the last phase of life. The aim of this study is to find the balance between safe care and the needs of dying patients and their families.