Marie Curie research project seeks 'informal carers' in Highlands who looked after terminally ill loved ones at home during Covid-19 pandemic

Informal carers living in the Highlands who looked after people who died from a terminal illness at home from October 2020 to March 2021 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 nearly 2000 people in the Highlands and Islands each year, is looking for informal and family caregivers to share their experience caring for someone at home throughout this period.

During the pandemic, the majority of the 59,000 excess deaths at home in England and Wales and 4000 excess deaths at home in Scotland were due to cancer, dementia and heart disease.

Whilst hospital deaths fell from 46-37 per cent, home deaths from causes other than Covid-19 increased by 33 per cent, the charity says.

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”.

Richard Meade, head of policy, Scotland, Marie Curie, said: “Informal and family carers provide substantial care for those living with a terminal illness and approaching the end of life and are often the main reason that a dying person is able to die at home.

“But frequently, informal and family carers do not get the physical, emotional and financial support they need. This is extremely concerning given these long-standing issues for carers have been exacerbated by the pandemic, and combined with almost 400,000 additional people becoming informal and family carers almost overnight as a result of Covid-19.

“During this period, we have seen more people die at home, placing an even greater demand for palliative care in the community. But it is unclear if carers of terminally ill people received all of the support they needed.”

Susan Swan, research nurse, Marie Curie said: “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 – 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 contact: Susan Swan for Scotland E: Susan.Swan@mariecurie.org.uk

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