Digital national conference on informal caregivers’ challenges

«We saw a sharp rise in participation in both 2020 and 2021, among caregivers and healthcare professionals. Last year we had 1,900 unique logins. It is obviously demanding to bring together so many people at a physical venue, so we chose to conduct the conference digitally this year too. Our goal is to spread knowledge of caregivers’ challenges and experiences and to share the latest research about these topics with as many people as possible. This is why we decided to continue with the digital format,” says Unn Birkeland.

She is the CEO of the Informal Caregiver Centre, established in Stavanger in 1998, where it still has its head office. An informal caregiver is anyone who has a close relationship with people affected by illness. This can include family members, friends, extended network, and colleagues. Ultimately, the patient defines their caregiver.

Desire for greater inclusion of informal caregivers

The theme for this year’s conference is "Caregivers - from extra work to sound involvement?". The choice of theme is based on extensive feedback from both professional communities’ and caregivers, since the latter group is often overlooked. According to Birkeland, the sound involvement of caregivers is important. Currently, this work is largely based on personal initiatives and there is little systems thinking in practice.

«The conference gives an insight into how the involvement of caregivers is integrated into both municipalities and health trusts. There is still room for improvement, and the conference aims to provide more insight into how the hospitals integrate caregiver involvement and other initiatives. We will take this knowledge and continue planning relevant themes for next year’s conference,” says Birkeland.

The Network for Carer Research at the Faculty of Health Sciences at UiS is one of the partners of the Informal Caregiver conference. The conference partners bring together professional and research environments, representatives from the practice field and other stakeholders to strengthen research and practice in the field of caregiver support and involvement. Sanden Media, Funksjonshemmedes Fellesorganisasjon, the Informal Caregiver Centre, VID and KS are partners in the conference.

What do you think about this network, and how can their research help caregivers?
“The conference is a meeting place for caregivers, professionals and researchers. It would be difficult to develop relevant research for clinical practice and professional development without the sound involvement of caregivers. Also, professional development without practical research is not desirable or possible.” answers Birkeland.

Illuminates the role of informal caregivers through research

The network was established at UiS in 2013 with the aim of contributing to greater knowledge of caregivers’ roles in civil society, in health and welfare services and not least, in education and research. Additionally, it will disseminate knowledge and create arenas promoting research and development projects in the field of caregiving.

«The conference gave us a great mix of research, professional knowledge, and shared experiences. I can clearly see that research is gaining more and more space in the conference program. Research in the field of informal caregiving is growing and together with public policy prioritization of the issue, this can support future development in the field. This will also result in the research network gaining importance.” says Inger Johanne Bergerød.

She is one of the network coordinators at UiS and a member of the program committee. In her doctoral thesis, Bergerød addressed the lack of knowledge on next of kin role for quality and safety in hospital cancer care, and the need for methods and tools for next of kin’s systematic involvement in these services.

Network for Carer Research is organized at the research center SHARE - Centre for Resilience in Healthcare at UiS. Sina Furnes Øyri and Solveig Hodne Riska are also affiliated to this research centre, and both participated in studio conversations during the conference.

Encourages a clearer role expectation

Birkeland and Bergerød emphasize that the voices of informal caregivers must be heard. We have spoken to one of the digital participants. Her name is Silje Sandanger, and she lives in Bryne. To better understand her role, she tries to put herself in other people's shoes.

“What would I want from my caregivers? What could I expect? Would I be disappointed/surprised? Hearing other people's stories, similar or different to mine, at least provides a meaningful context for my own story,” says Sandanger.

She points out, that objectively speaking, the system expects and requires nothing of her, but she wishes that this was not so. By creating a visible and validated role, caregiving can become a more natural part of life.

«Hearing other people's stories during this year's conference gives my own story value and validation. It is irrelevant whether I feel provoked, irritated, or emotionally charged. Listening and learning from other experiences widens my perspective,” says Sandanger.

Supports continuation of digital conference

According to Sandanger, many caregivers are unfit for work or on sick leave because of the stress they are under, which really makes a digital conference worth its weight in gold. What she will remember best from this year's event is undoubtedly the adoption stories. Sandanger is herself adopted and talks publicly about her grief and longing for a mother and a biological connection. For next year's conference, she wants to be on the list of people who are invited to share their story.

According to Sandanger, many caregivers are declared unfit for work or on sick leave because of the stress they are under. This makes a digital conference worth its weight in gold. She says that what she will remember best from this year's event is undoubtedly the adoption stories. Sandanger is herself adopted and speaks publicly about her grief and longing for a mother and a biological connection. She has expressed her wish to be on the list of people who are invited to share their story at next year's conference.

«If it is possible, I would like to bring my mother with me as well. The system around adoption, adoptees, adoptive parents and birth parents can learn a lot from my mother.” Sandanger concludes.

Text: Eigil Kloster Osmundsen