Greater focus on the role of informal caregivers

“Being next of kin comes at a high price. Not only financially, but also emotionally and socially. Life, as we might have imagined, is suddenly turned upside down. In many ways, we must redefine our familiar lives and adjust expectations about future goals. For many of us, it can bring about grief reactions related to personal loss, but also loss of hopes and desires for our loved ones. All of us have differing levels of resilience, knowledge and experience that influences how we meet new challenges in life.” says Hassel about being next of kin.

Satisfied with the organization of the conference

She has attended the conference on informal caregivers in the past and has also been sure to sign up for the Informal Caregiver Centre's newsletter. This enables easy sign up for the next annual conference. It also provides the opportunity to pass on information and encourage other caregivers and next of kin to participate. Hassel is deeply involved in this specific subject area, and has her education and experience from the health sector. She has also worked in various stakeholder organizations and targeted rights issues in various segments.

As a next of kin she was delighted that the conference was held digitally, and also that it was available for quite some time after the live broadcast. The digital organization left room for interested persons to get familiar with the conference presentations. Hassel expressed her desire to be able to deliver feedback once the conference was concluded, in such a way that constructive input could be integrated into the next annual conference, to increase the event’s significance and relevance for all parties.

«The conference is an important arena that gives professionals impetus to see informal caregivers as a serious resource. It creates a common platform for the professionals and informal caregivers, where the latter experiences being seen, heard and taken seriously. Not least, it provides me as a next of kin a voice in the professional environment. It is better now, but there is still potential for improvement.” Hassel emphasizes.

She states that the tussle is often over funding and the distribution of resources. The majority want to contribute to helping the weakest in society, but there is always a discussion about who pays, and where the money comes from. She also calls for greater focus on the need for cost effectiveness. Hassel is clear that it should not be at the expense of service quality for the end user, though she acknowledges that the topic usually unleashes fiery debate.

A compound perspective of Next of Kin

“First and foremost, I was a mother of two children with special needs. My son Martin has a rare disease called Williams syndrome. I also had a bonus daughter who had a severe degree of Aspergers syndrome, and who I followed up full-time. She died seven days after Norway went into Corona lockdown. For many people, this was a very demanding time. For us, it became an additionally demanding situation when we found her dead in the basement apartment of our home,” says Hassel.

Her expertise in the field of healthcare showed itself to be useful. Hassel discovered that the crisis team that is called upon in the event of such dramatic/traumatic incidents did not have the experience and competence to talk to and deal with her cognitively impaired son in the event of such a death in the family. Fortunately, her professional background came in handy.

«There is a lot of literature about grief among children and adults and grief reactions in general. We lack literature about how one meets people with varying degrees of cognitive impairment/limitations; how we approach them as professionals and communicate with them at their level and in their language. For me, it becomes difficult to distinguish between my next of kin perspective and my professional perspective. I often find that I have to switch between these roles, since this is the best way to help my child.” Hassel points out.

Calls for easier access to information for informal caregivers

Hassel states that she would appreciate a common database with relevant information for next of kin and other resource persons. She is clear that not everyone can easily access information from Official Norwegian Reports (NOU) and  the municipalities' and NAV websites, to mention a few.

«I also have a genuine desire for greater collaboration between state, county and municipal bodies to create automated, age-related information based on existing registers.” explains Hassel.

Sharing experiences on her own website

She has collaborated with her son to establish her own website. The purpose is to inspire others to see that there are possibilities in life even if things did not turn out as intended. They want to show that life with a differently abled child comes with opportunities. The website shares experiences, information and knowledge with others in need. In the wake of her bonus daughter’s death however, they had enough on their plate just getting their lives back on track.

«Our son has moved in with a friend into our basement flat. My aim is to adapt it into a futuristic flat, with the extensive use of welfare technology aids. I want to be able to provide efficient services for the boys, but not at their expense. We also want to make these services more cost-effective, but our main goal is for the boys to experience greater mastery and independence in their own lives. This is a project I have worked on and been passionate about for many years.” she says.

Positive for informal caregiver research

The Network for Carer research at the Faculty of Health Sciences at UiS is one of the partners of the Informal Caregiver conference. It brings together professionals, research groups, representatives from the field of practice and other stakeholder groups to strengthen research about support for and involvement of caregivers.

What do you think about this network, and how can research help informal caregivers?

«Research is always important and regardless of what is being investigated, we should invest in it. Research increases knowledge and is an important foundation for professional validation to further service development and to further develop the direction and benefit of implemented measures or necessary changes,” says Hassel in conclusion.

Text: Eigil Kloster Osmundsen