Research to investigate impact of COVID-19 pandemic on family carers

Julia Mellluish with her 12 year old son

The experience of family carers during the COVID-19 pandemic will be explored in a series of weekly interviews conducted over the next 3 months.

The “Caring through Coronavirus” study will seek to understand how family carers are coping during the pandemic and explore whether changes in policy, legislation, and health and social care provision are impacting their wellbeing and caring responsibilities. Nearly nine million Britons provide unpaid care for family members and friends with long-term illnesses and disabilities, including those most vulnerable to the virus. Many carers also have their own underlying health conditions.

Dr Siobhan O’Dwyer, of the University of Exeter, is leading the study, which started interviewing carers this week. She said: “Many carers were already struggling before the pandemic. Now with respite services cancelled, schools closed, nursing homes off limits, and access to food and medication restricted, the pressure is more intense than ever before. If we don’t pay attention to the needs and experiences of family carers now, we may soon find we have another crisis on our hands.”

Although this week’s publication of carer guidance and the announcement of £750 million for charities are a welcome step toward to supporting carers, there is still more to be done.

Findings from the study will be shared each week with key government departments and charities. Dr O’Dwyer said: “Research usually takes years before it benefits the community. But by documenting carers’ experiences in real time, and sharing the findings as soon as we have them, we can help the government, social care providers, and charities tailor the support they’re providing to carers right now.”

Julia Melluish cares for her 12 year old son, who has spastic quadriplegia, is doubly incontinent and is registered blind. She said: “When schools closed and support services stopped, the breaks that usually safeguard our wellbeing disappeared. We’ve been catapulted into 24/7 caring and it’s relentless. If I’m caring for my son around the clock, I’m unable to meet the needs of other family members. On top of everything I normally do, I’ve now had to take on all the roles that other people usually play – teacher, occupational therapist, physiotherapist – and it’s only going to get harder as the weeks go on.”

Mrs Melluish has joined the study as a co-investigator to help the researchers ensure their methods and materials are suitable for carers. She said: “I’m proud to be involved with this study. People having been clapping for doctors and nurses, but family carers have been forgotten. This research is something positive that’s finally recognising the essential work we do.”

The study includes people caring for parents, partners, and children with a range of conditions, including dementia, autism, cerebral palsy, and chronic fatigue. Carers will be interviewed every week for the next three months, with the potential for the project to also interview carers later in the year to explore longer-term impacts and the transition to life after the pandemic.

The project is led by the University of Exeter with collaborators from University of Southern Denmark; Loughborough University; University of Tennessee Knoxville; Cardiff University; Northumbria University.

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