Bereavement during COVID-19 study

The COVID-19 pandemic disrupted every aspect of life, including how we die and how we grieve. This project investigated the mental health effects and support needs of over 2,000 Australians bereaved from any cause during the COVID-19 pandemic.

Partner logos included are Calvary Hospital, Australian Funeral Directors Association, Australian Centre for Grief and Bereavement, Carers NSW, Multicultural Health Communication Service, Maridulu Budyara Gumal (SPHERE), Flinders University, PHN south Western Sydney, Meaningful Ageing, PHN Central and Eastern Sydney, The Groundswell Project and IMPACCT

Investigators

Principal Investigators

Associate Investigators

Project Manager

Research Assistants

1 IMPACCT Centre, Faculty of Health, University of Technology Sydney
2 Department of Palliative Care, Calvary Health Care, Kogarah, NSW
3 School of Psychology, The University of Queensland
4 Centre for Healthcare Transformation, School of Nursing, Queensland University of Technology
5 School of Population Health and enAble Institute, Curtin University
6 Department of Medicine, St Vincents Hospital, University of Melbourne
7 Research Centre for Palliative Care, Death and Dying, Flinders University
8 School of Nursing, Midwifery, Health Sciences & Physiotherapy, Notre Dame University, Australia
9 School of Business, Western Sydney University
10 District Palliative Care Service, Liverpool Hospital, Liverpool, NSW
11 Medical School, Australian National University. Canberra, ACT
12 Calvary Mater Hospital, Department of Palliative Care, Newcastle
13 Calvary Health Care Bethlehem, Victoria
14 Palliative Care Australia, Canberra, ACT
15 Centre for Health Policy and Management, Trinity College, the University of Dublin

Funding

Funded by the Medical Research Future Fund
- Coronavirus Research Response – 2020 COVID-19 Mental Health Research Grant Opportunity - MRF2005576

Summary

We thank the bereaved participants who gave so generously of their time in completing our surveys and participating in interviews. We thank the multicultural health workers who gave of their time in interviews, Aboriginal and Torres Strait Islander investigators and the members of the reference group and the Community Elders who were willing to be involved in Study 4.

Download a copy of the summary [PDF, 205KB]

Read the full report [PDF, 1052KB]

Context

The COVID-19 pandemic changed how we live, die and grieve. During the first two years of the pandemic 334,700 Australians died in these circumstances, including 2,251 from COVID-19.[1]

Australians faced some of the strictest COVID-19 public health measures globally. End-of-life care and bereavement practices were
significantly disrupted due to community fears of contracting the virus, public health measures introduced to reduce infection rates and protect healthcare workers, and the re-deployment of front line workers to other roles. The burden of such strict public health orders was experienced differently by States, regions, and cultural groups.

Many families and friends were left to grieve alone and in isolation, unable to visit their dying person, and unable to either receive or give physical support to each other. Many face-to-face support services closed or switched to online delivery, and mental health support services were overwhelmed by general demand within the community. The cumulative impacts of these circumstances on end-of-life care and bereavement responses raise the potential of significant negative mental health costs for the person
themselves, the health care systems, and society.

The Bereavement during COVID-19 Study documented the experiences of Australians bereaved, from any cause, during the first
two years of the COVID-19 pandemic. The aim was to hear their stories, establish their mental health and support needs, and inform policy planning for future pandemics. In doing so the study also identified a range of pre-existing cracks within the system.
Interviews were also held with multicultural health care workers. 

Recommendations based on the findings were developed in collaboration with consumers, key stakeholders, and community organisations.

  • Over 2000 people responded to an online survey and 100 of these participated in additional interviews.
  • Multicultural health workers were interviewed about the experience of their communities.
  • Recommendations were developed in collaboration with consumers, key stakeholders and community organisations.

Conclusions

The COVID-19 pandemic introduced extraordinary challenges for individuals, society and for end-of-life and bereavement care, and simultaneously exposed significant pre-existing gaps within healthcare, administrative and support systems.

The lessons learned from this pandemic can help us better prepare and coordinate our approach to death and dying to minimise negative consequences of public health measures and fragmented systems.

Specific patterns of intense and chronic grief reactions are associated with negative long‑term health outcomes that can be reduced through specialist interventions.

  • Bereavement care must be elevated within pandemic planning and health care processes to address the gaps
  • Basic bereavement outreach should be implemented to prepare families for the death of their loved ones and supporting them afterwards is essential

To achieve this, a National Pandemic Bereavement Preparedness Plan, created in collaboration with relevant stakeholders (i.e., consumers, grief and loss professionals, health, funeral, coronial services, government and support services) is required.

This is essential to mitigate poor bereavement outcomes and better support people who are dying and the grief of their families.

Key findings

  • Many bereaved people experienced high levels of grief, depression and anxiety, indicating the pandemic and related restrictions were associated with adverse impacts on bereavement.
  • Disruptions to the ability to care for the dying person and the experience of social isolation and loneliness were linked with worse mental health outcomes.
  • Inconsistent and changing rules across States, Territories and health settings were a source of confusion, fear, frustration, anger, guilt, stigma, and despair for the bereaved.
  • Services and supports were often not available, not offered, or varied in their quality. This was a source of distress.
  • Although high quality resources have been developed, there was a lack of provision of information about grief and support services.
  • Many reported unmet needs for social, community and professional supports.
  • There were long waitlists for accessing support from mental health professionals and mixed experiences with the consultations. Experiences with telehealth, support lines, and self-help resources were also mixed.
  • Interactions with many government services and administrative processes were experienced as lacking in compassion or an understanding of grief and bereavement.

Download a copy of the summary [PDF, 205KB]

Read the full report [PDF, 1052KB]

Background

In March 2020 the World Health Organisation declared COVID-19 a global pandemic. Australia, like many countries, introduced a range of national and jurisdictional (State/Territory) “COVID‑safe” measures, to slow the spread of the virus (“flatten the curve”), reduce deaths, and protect frontline workers, vulnerable members of the community, and essential industries.

Measures varied across jurisdictions as circumstances changed and knowledge of the virus increased but included social distancing and general mask-wearing mandates, stay-at-home orders, limits to gathering in public, mandated industry shutdowns, quarantine requirements, curfews, and State and international border closures.

Across health settings and aged care facilities there were also requirements for personal protective wear, visiting restrictions and periodic lockdowns, and frontline staff were relocated to other roles including contact tracing, vaccination and testing centres. Together with the widespread community fear of contracting COVID-19, there was significant disruption to culturally expected end-of-life-care and bereavement practices.

National survey and interviews

Over 2000 bereaved Australians completed an online survey (n=2224) detailing the impact of the COVID-19 public health measures on providing end of life care, visiting and saying goodbye at the end of life, funerals, and supports (informal and formal) after the death. A sub-set of 100 bereaved Australians participated in interviews to tell us more about their grief and bereavement experience during the first two years of the pandemic.

Media

The “silent epidemic” of grief during the COVID-19 pandemic

Acknowledgement of Country

UTS acknowledges the Gadigal people of the Eora Nation, the Boorooberongal people of the Dharug Nation, the Bidiagal people and the Gamaygal people, upon whose ancestral lands our university stands. We would also like to pay respect to the Elders both past and present, acknowledging them as the traditional custodians of knowledge for these lands.