The COVID-19 pandemic has disrupted every aspect of life, including how we die and how we grieve. The effects of this unprecedented situation are likely to continue ricocheting through society into the foreseeable future.
I am leading a research study at the University of Technology Sydney to look at the experiences and support needs of people bereaved from any cause during the COVID-19 pandemic.
As businesses and cities open up again, we are told that life is getting back to ‘normal’, but for people who have experienced a death during COVID-19, there is no back to normal.
Each year at least 44,000 Australians will develop chronic and debilitating mental health impairments following the death of a family member or close friend.
In Australia, the pandemic came after catastrophic prolonged drought, bushfires and floods. Deaths during COVID-19 occurred against a backdrop of many other losses such as loss of jobs, routine, freedom to travel, play sport, be involved in hobbies, visit friends and loss of future plans. This means that many people are living in a state of mild but chronic grief as they manage multiple losses.
These secondary losses are likely to complicate normal grief reactions by compounding distress and removing meaningful activities that may provide a respite from distress.
Grief itself is a risk factor for many physical health problems and bereavement during the COVID-19 pandemic, whether attributable to the virus or not, could present additional significant risk factors for poor mental health due to public health measures.
Researchers overseas are concerned about an increased risk of Prolonged Grief Disorder (PGD) as a result of the pandemic. PGD is characterised by persistent and disabling yearning and distress; ongoing shock and disbelief; avoidance of reminders of the loss; a disturbed sense of self; emotional numbness; and a sense of purposelessness and meaninglessness without the deceased that is ongoing for at least 6 months and exceeds cultural and religious norms.
PGD is linked with substantial mental and physical health morbidity including increased rates of depression, anxiety, suicide and substance use. The enormous burdens associated with PGD, prompted the WHO to introduce the diagnosis into the International Classification of Diseases. Annually, 160,000 Australians die and it is estimated that 4 persons are effected by every death that occurs. This equates to 44,000 new cases of PGD in Australia annually.
When the COVID-19 pandemic began, strict hospital, palliative care unit and nursing home visitation restrictions were introduced with many services only allowing one nominated family member visitation rights just prior to the death. There have also been cases in nursing homes or in acute services where no family member could be present.
People who have opted for home deaths as a means of limiting the impact of distancing restrictions were unprepared for the experience of the death and lacked usual levels of professional and community supports, including support for the carers.
Routines and rituals such as wakes and funerals that give comfort after a death, were restricted by public health laws during the pandemic. In addition to not being able to visit loved ones in hospital or nursing homes, restrictions on travel meant they could not attend the funeral when their loved one died or to travel inter-state or overseas if the death occurred there.
There were concerns that fear around going to the doctor or the hospital in case they caught COVID-19 or brought it home to vulnerable family members. Families had less contact with doctors and this has left many people unable to have conversations about the likely prognosis and to make preparations. And lack of preparation for the death is a known risk factor for prolonged grief disorder.
Graphic pictures on television screens of multiple deaths overseas from COVID-19 brought fear and uncertainty. People who experienced the death of a family member from other causes perhaps feel their loss is less worthy of attention and hesitate to ask for support as their own circle of friends are preoccupied with their own worries.
Little is known about the effect that this pandemic has had on people’s mental health or what support they need if they had a family member or a close friend die.
Participation in the study will consist of a 30 minute online survey that asks about individual experiences of bereavement, the kind of support (if any) people have received and wanted and what has been most helpful and least helpful. There is also an opportunity to take part in an interview and do other surveys to see how mental health needs may have changed over time.
The survey is anonymous and can accessed at www.lossandgriefduringcovid19.com by anyone who has experienced a death from any cause during 2020.
This project will systematically establish the evidence base to: 1) quantify the mental health outcomes and needs of those bereaved during COVID-19; 2) optimise service preparedness for future global pandemics or other humanitarian crises; 3) build the evidence for effective clinical interventions, and 4) identify preventative mental health and supportive bereavement recovery strategies at the macro, meso and micro levels.
It will make recommendations to improve access to bereavement support for people during this current and any future pandemics. It will also guide the education and training of mental health staff and other clinicians. It will also recommend protective mental health and bereavement support plans.
