THE IMPORTANT ROLE OF RELATIVES

Behind each patient is a relative, someone who contributes massively to recovery. However, the ability to be there in the best way possible is dependent on good cooperation with the healthcare service, and good selfcare for the relative.

Text: Eva-Lotta Sigurdh

hen someone is very ill or seriously injured, it is not only that person’s life but also the lives of relatives are turned upside down. Despite this, relatives, as a category, have long been neglected in the healthcare world, both clinically and in research.

But one person who has taken an integrative view and put the spotlight on relatives is Kristina Ziegert, a nurse turned professor of care.

“I was struck by the lack of patient knowledge that the healthcare profes- sionals had, which in turn required us to rely on information provided by relatives to fill in the gaps. This information is vital for us to simplify everyday life and help the affected person recover faster. That’s why I decided to quit nursing and conduct research into this,” Kristina reports.

HER THESIS, Everyday life among Next of Kin of Haemodialyses Patients (and her study Maintaining families well-being in everyday life) has put the invaluable role of relatives on the map and thus helped gain greater recognition for this group. The thesis focuses on the complete change in everyday life for those affected and their next of kin after leaving hospital.

“All of a sudden, all the responsibility is placed on the relative, who often only now realises the implications of all the challenges ahead – without having any idea where to start.

That’s why it’s important to be well prepared before the patient comes home,” Kristina emphasises. According to her, two things are vital for ensuring the relative will have good support in this new situation – trust your instincts insisting on care, and taking care of yourself.

The first aspect requires the relative

to take the initiative directly for a follow-up consultation with the doctor and nurse in charge, as the healthcare service rarely does this, and, prior to coming home, demand clear answers to questions such as: what is the best infor- mation and support for me specifically, and how should I interpret the available information? What happens from here onwards? Who will be my contact? Good cooperation with the healthcare service means a lot, Kristina emphasises; she recommends daily catch-up times, for example short walks or little breaks as tools for relatives to take care of them- selves as a coping strategy.

“Other tips are to join various associations and networks for others in the same situation and to read patient blogs, available on many County Council websites.

ALTHOUGH THE ROLE of relatives has long been neglected, more and more research is now being done in this area. One example is cancer researcher Gunnar Steineck’s studies into how relatives of cancer patients themselves run the risk of becoming ill (above all, mentally) if they do not receive timely and clear information about diagnoses and prognoses from the healthcare service.

“In our studies, we’ve seen it’s important for relatives to be able to prepare for what will happen,” according to one of the study participants, senior lecturer Arna Hauksdóttir, in the article I den sjukes skugga [in the shadow of the patient] (by Fredrik Hedlund, Medicinsk Vetenskap 4, 2013).

Just like Kristina, Gunnar Steineck also emphasises the importance of good cooperation with the healthcare service, as well as use of social media.

The Swedish Family Care Competence Centre (NkA) www.anhorig.se is another source of support.