Large international survey to ask informal caregivers about their experiences

With up to 13.6 million or one in four people in the UK performing some element of informal care since the Coronavirus pandemic according to Carers UK, and statistics suggesting that as many as one in three in Europe are acting as informal caregivers, it’s more important than ever that we know how best to support these vital, unpaid and often/largely unsupported care providers in our communities.

It is estimated that the support given to a loved one or friend who is older, disabled or seriously ill, would cost the country £132 billion a year (the cost of a second NHS) if provided through public / private healthcare.

Carer smiling with person in wheelchair

About ENTWINE

ENTWINE is an exciting new international project being run by a group of young researchers that focuses on informal caregiving. Informal caregivers are those who provide care to a relative or friend with a chronic illness, disability or other long-lasting health or care need.

Survey on Informal Care

Researchers at Bangor University’s School of Psychology are leading on one work package within a very large European Union Horizon 2020 research and innovation programme project seeking to support this vital group of individuals. They want caregivers and those receiving care, to share their experiences, including the challenges and benefits of giving and receiving care.

To participate, people can complete an online survey and can volunteer to provide more in-depth information through weekly short assessments if they choose. See https://www.entwine-icohort.eu/ to get involved.

Throughout Europe, people are living longer due to medical advances. At the same time, the number of informal caregivers has decreased in recent years. This has led to some people not receiving care, as well as increased the challenges faced by informal caregivers. Without people like you – the healthcare systems around Europe would face significant challenges. This survey is devoted to hearing your experiences about giving or receiving care.

Caring for a spouse, partner, family member or a close friend is an important role that you may experience in your life. It may start by driving your loved one to get groceries or to take them to medical appointments/the doctor. Later, you may find yourself taking more time off from work in order to look after your loved one due to their health needs.

No matter where you are in the journey of informal caregiving or whether you receive care from your loved one, we are interested in hearing about your unique experiences as a caregiver or a care recipient.

Who can take part?

If you are 18 years of age or over and you provide or receive informal care as a result of a chronic illness, disability or other long-lasting health or care need, then you may be eligible.

Val Morrison, Professor of Health Psychology at Bangor University, who is leading the ENTWINE work package explains:

“While medical and health advances mean that life expectancy has extended for us all, including many people living with chronic illnesses, demands on healthcare globally, mean that there is a gap between those needing care and individual states’ ability to provide care.

“That gap in provision is generally filled by friends and family as informal caregivers.

“How do these people manage to provide care at a time when we have also seen changes in the workplace which mean more women working and people working longer hours or until a greater age? We’re interested to hear about the challenges and benefits of providing care, as well as people’s motivations for caring.”

Mikołaj Zarzycki, who was selected from Poland for the multinational research team, will be conducting the research from Bangor University’s School of Psychology. He said:

“We probably all know someone who is an informal caregiver, even though they may not define themselves as a carer, they’re just providing the support that a loved family member needs due to ill-health or age. But caregiving is difficult, and these people deserve to be able to choose suitable support for their needs, especially in our changing times. In the same way, receiving care also has its challenges as well as benefits.

“That’s why we need to understand more about the individual experience of caregiving and how that may change according to who you are, or where you live or any number of other factors.”

One of the carers said about her experience of giving care:

“I gave up my life for her. When my mum had a stroke, I was still working full-time, having to provide for my children and combine life with work. But I couldn’t leave her, all the years my mum has cared for me, I feel I need to pay back all the love she gave me. Although it’s very hard sometimes and I worry about when I may be unable to do enough or neglect my children and husband because of caregiving, I cannot leave her. It is impossible to explain how long it takes to do the most ordinary things for an invalid, like bathing or moving her body around, it can change your whole life. But I love her.”

Mikolaj Zarzycki added about the multinational ENTWINE Project:

“It’s a privilege to be part of this Europe-wide ENTWINE Network which has enabled me to come to Bangor University and work in an international team with renowned researchers and carry out a PhD in such a societally important issue as informal care.”

For more information, visit the ENTWINE website here.

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