“Long-term care staff and informal carers have long been regarded as two separate groups. But when we look more closely, we see that they often face similar challenges”, says Elizabeth Hanson, professor of caring sciences.
“They face heavy workloads, long days and stress. Moreover, they often work in parallel – for instance in home care, where both care staff and informal carers support the same person in different ways. We see great potential to find better forms of cooperation with the help of research.”
Sweden’s first national carers’ strategy
The Linnaeus University research group on informal care is closely linked to the Swedish Family Care Competence Centre (SFCCC) and contributes with scientific knowledge and education in the field. When Sweden’s first national family carers’ strategy was launched in 2022, the event was held at Linnaeus University, whose researchers played an active role in its development. The strategy aims to strengthen support for family carers and make it more equitable across the country.
Five countries collaborate for better support
As Europe’s population ages, the need for long-term care and support is increasing – along with the need for strong collaboration between those who provide it.
Well Care is a four-year research and innovation project where partners from five countries – Sweden, Germany, Italy, the Netherlands and Slovenia – work together to improve support for those engaged in long-term care. This includes staff working in, for example, home care nursing, residential care and personal assistance, as well as informal (family) carers who provide regular help, support and even care for a loved one.
When Elizabeth received the go-ahead to launch the Well Care project, she saw it as recognition for all those who provide care, both professionally and personally. As a researcher and former palliative care nurse, she has devoted her entire career to care work. She believes that caring is a form of work that is complex and often taken for granted.
“The Covid-19 pandemic made it clear to society as a whole just how vital carers are – both informal carers and care workers. Traditionally, the most prestigious EU initiatives in healthcare have prioritised medicine, specialist health services, and specialist medical care. Everyday care and support have been largely sidelined – even though over 55 million people across Europe carry out this crucial work”, says Elizabeth.
Since the pandemic, the EU has launched a common strategy for long-term care and has increased its investments in research in the field. One such initiative is Well Care, the largest EU-funded project ever at Linnaeus University, with a budget exceeding SEK 65 million from the Horizon Europe research and innovation programme.
Elizabeth Hanson
Professor of caring sciences
Elizabeth Hanson is a registered nurse and research director at the Swedish Family Care Competence Centre (SFCCC), which she co-founded in 2007. She is also a former president of Eurocarers, an organisation with 70 members working to improve the situation for informal carers across Europe.
FUNDING AWARDED SINCE 2014
SEK 27.7 million
Funder: The European Commission
SEK 16.7 million
Funders: Forte, The Kamprad Family Foundation, Skandia, The Swedish Research Council
Different countries, different care models
One element of the Well Care project is to compare how long-term care and family care are organised in different EU countries and to learn from each other’s more successful methods. The five participating countries are characterised by differing care systems.
“In northern Europe, we have a stronger social protection safety net. This differs from countries such as Italy, where long-term care has traditionally been provided in the home by family members – often women. As well, those who can afford it employ private personal assistants, who frequently work under difficult conditions”, explains Elizabeth.
In the Netherlands, the so-called Buurtzorg model has become popular. It is based on small, self-managing teams of nurses responsible for the care of people with long-term illnesses within a geographical area, such as a neighbourhood. The teams provide everything from medical care to social support.
“What distinguishes the Buurtzorg model is that nurses enjoy a great deal of autonomy. They plan their work themselves and have direct contact with both patients and family members. It’s an example of an approach that could inspire developments in other countries.”
Municipalities testing new approaches
The goal of Well Care is not to copy a single model but to identify good practices and tailor them to each country’s specific conditions. Elizabeth is particularly pleased that the project has strong support among those involved in everyday care work. Several Swedish municipalities are participating and, like the other countries, will test new ways of working. To evaluate the methods, researchers, informal carers, long-term care workers, decision-makers and policy makers meet regularly to exchange experiences and ideas.
When working with long-term care, you often encounter a whole life situation – with family members who struggle, provide support and are themselves deeply affected, both emotionally and socially.
A central concept is care partnerships – strengthening collaboration between long-term care workers and family members who provide help, support and/or care on a regular basis to a loved one. This is something Elizabeth and her colleagues at Linnaeus University have worked on for many years.
“It may sound simple to improve communication and cooperation, but in practice tensions often arise between care staff and informal carers, leading to conflict. People work under pressure, and caring for a loved one can be emotionally intense. We know that both patients and carers benefit when cooperation between professionals and family carers works well. Now we need to identify evidence-based and sustainable methods for this – and make those methods accessible to more people”, Elizabeth concludes.
Careers put on hold due to caring responsibilities
The majority of Sweden’s 1.3 million informal (family) carers are in paid employment, and almost half of them report that caring responsibilities have a negative impact on their ability to work, according to research from Linnaeus University.
Women are particularly affected. One in six employed women who care for, help or support a relative reduce their working hours, and twice as many women as men stop working altogether when taking on caring responsibilities.
The impact on work capacity varies depending on the type of care provided. Those caring for someone with mental ill health find it particularly difficult to continue working. In addition, people who reduce their hours or leave work completely risk struggling to return to the labour market later on.
“Family carers perform invaluable work for others, but it often has negative consequences for their own lives. The goal of our research is to ease and highlight their work and make their contribution feel even more meaningful and manageable”, says Elizabeth Hanson.
