Research explores impact on informal carers who nursed people who died at home during first wave of COVID-19 pandemic

Close up of a nurse in uniform holding a watch.
The research team are looking for informal and family caregivers to share their experience caring for someone at home between October 2020 and March 2021.

Informal carers in the Midlands who looked after people that died from a terminal illness at home during the COVID-19 pandemic are being asked to take part in a research project funded by Marie Curie and led by the University of Birmingham.

Marie Curie, which supports over 1,300 patients in the West Midlands each year, and the research team are looking for informal and family caregivers to share their experience caring for someone at home between October 2020 and March 2021 during the COVID-19 pandemic.

During the pandemic, the majority of the 59,000 excess deaths at home in England and Wales* and 4,000 excess deaths at home in Scotland** were due to cancer, dementia and heart disease. While hospital deaths fell from 46-37%, home deaths from causes other than COVID-19 increased by 33%.

Lead researcher, Dr Cara Bailey, of the University of Birmingham’s School of Nursing, said: “Little is known about the impact upon people who cared for those who died at home during the pandemic at a time where social support and important services were restricted.

“The views of bereaved carers will help Marie Curie understand what level of support they received from health and social care professionals and document the key learnings for the provision of good support for informal and family caregivers in the future.”

Ruth Driscoll, Head of Policy, England, Marie Curie, said: “Carers play a vital role in providing support to family members and close friends with a terminal illness, often doing so through to the end of that person’s life. This caring role is extensive, varied and in many cases around the clock, taking its toll on their physical and mental health.

“Despite the critical role that carers play in looking after their loved one and reducing pressures on the health service, the support available to them often falls short of what is needed.  Seventy six per cent of bereaved carers of a person who died at home during the COVID-19 pandemic told us they were not offered all the care and support they needed in a recent Marie Curie survey. 

“With the number of deaths taking place at home up 30% this year compared to the previous five-year average, and more people expected to die at home in the future as our population ages, it is more important than ever to ensure the needs of carers of people at the end of life are not forgotten.”

Susan Swan, Research Nurse, Marie Curie added: “We are keen to hear from informal and family carers about the experiences and challenges they have faced caring for a terminally ill person at home from October 2020 to March 2021 during the pandemic.

“Demographic changes project that more and more people will die at home in the coming decade, which is likely to see a similar increase in the number of informal and family carers, so we need to identify the gaps in care now and develop better health and social care services to support carers in the years to come.”

For those interested in taking part in the research please email Dr Cara Bailey.

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References

  • *Kings Fund 2021
  • **National Records of Scotland 2021