Dissertation on the Turning Point for Relatives of Stroke Victims

Virtually everyone has a relative or knows someone who has been the victim of a stroke. About 35000 people in Sweden experience it yearly, but that figure might as well be twice as big, it all depends on who counts as a relative. Being the relative of someone who has suffered a stroke is chaotic, a lot changes in a short period of time, but within a month there is a turning point says Catharina Wallengren Gustafsson. And it is this turning point that nurses need to learn to identify, in order to be able to provide the best support in the new and unusual situation in life.

“That is when the receiver is open to information and ready to adjust life to the new conditions,” she explains.

Catharina Wallengren Gustafsson speaks of the importance of support for the relative, helping him/her find a balance between freedom and responsibility, between individual life and care for the stroke victim. These may appear to be obvious things, but that is not always the case.

 “Waste of Resources to Provide Support for Relatives Who Don’t Want It or Aren’t Receptive”

Catharina Wallengren Gustafsson is experienced in geriatrics, ie care for the elderly, and rehabilitation. She has experience of contacts with stroke victim and their relatives herself.

“It is always tough to meet the family. Several times I have considered what to say and as a nurse I did what I though best, from my perspective,” she remembers.

It was the discontentment among the relatives that pushed Catharina Wallengren Gustafsson into further research on the subject.

“There is plenty of educational support for relatives, but there is also a tendency to educate and lecture based on personal experience, meaning one-way communication from a doctor, nurse or physical therapist,” she explains and adds: ”It is time for a new approach.”

New Educational Approach

Catharina Wallengren Gustafsson speaks of a new educational approach and asks for a dialogue with the relatives and a mutual exchange. The relative gets to take part in the training, which aims at changing approach and shape it into a dialogue, where you meet the patients and their relatives. Catharina Wallengren Gustafsson also says that her approach to relatives of stroke victims is not traditional. Through personal experience she says that relatives are those who are felt by the victim to be close when the stroke occurs.

“It doesn’t have to be an actual blood relative, which is why it is important to ask the person who is pointed out if he or she is able to be a relative and provide support.”

The Right Support at the Right Time

In the study, her starting point has been to review the situation of the relatives from a learning perspective.

“The aren’t that helpless,” she concludes.

In the first part of the thesis she shows how the nurse can train to identify the turning point, a point in time where the relatives actively search for someone to talk to. That is when they are receptive to information and support.

Catharina Wallengren Gustafsson has interviewed 16 relatives during the first critical period, ie one week from the stroke and a few weeks on. She thereafter interviewed nine of them six months later.

“The results vary depending on the subject’s relation to the victim. There is a difference between being married, being a daughter or being a neighbour. A wife faces a tougher time for example, if the husband was the one who drove, paid the bills, did the gardening, or vice versa. But from the learning perspective that I have examined, everybody’s receptive to becoming a source of support, and shows that willingness.”

National Information Center

In the other part of the dissertation, she has reviewed the written material offered at stroke units, aimed at relatives. Her inventory review shows that most of the material is readable, but the contents are rarely aimed at the relative. She also points to the fact that it is often undated and that the author is seldom known.

“The written material is focused on the physical condition, never on how it is to live with a stroke victim.”

In her dissertation, Catharina Wallengren Gustafsson provides a simple solution to the problem of improving information management.

“A national electronic information center is what’s missing. A place to store and easily update the information material.”

That means an equal material, where it is easy to access the information that each relative is interested in, that fits his or her unique needs.

“If we leave it to the relatives, we need to provide them with the right support. It’s not just a matter of our obligation, but a matter of the relative’s rights,” concludes Catharina Wallengren Gustafsson.

Title of Dissertation: They Can, They Want To and They Can Spare the Energy, But…
Opponent: Senior Lecturer Birgitta Andershed
Time and Place for Defence of Thesis: Friday the 5th of June at 10am.