A new study on relatives and people with RA: "The best we have is each other"
Occupational therapist Maria Bergström researches the importance of relatives to people with RA. Preliminary results show that people with RA have a strong desire for independence, that they are stubborn, have high expectations of themselves, and do not always share how they feel. At the same time, it is clear there is a constant exchange of support between people with RA and their relatives.
Maria Bergström is an occupational therapist and doctoral student at Linköping University, where she researches people with rheumatoid arthritis (RA) and their relatives.
Her dissertation focuses on the social environment around patients, more specifically their relatives, and what their influence can mean for people with RA and their participation in everyday life. Elsa met Maria Bergström to hear about the preliminary results of the study.
What kind of study has been done?
We interviewed people with RA and their relatives about their everyday life and how they think about support in everyday life. Participants were interviewed individually and people in the same "couple" were always interviewed by two different researchers. In that way, we avoided any preconceived notions in our interviews.
Since the people with RA chose and invited those they consider to be relatives, we have a mix of participants. The most common are spouses and cohabitants, but we also have examples of the parent-child relationship and also close friends. In our analyses of the interview material, we started with each “couple” as a unit and looked at what both parties were talking about. Then we went on and found common denominators for the whole group of participants.
What results did you see?
Our preliminary results show that people with RA have a strong desire for independence, that they are stubborn, have high expectations of themselves, and do not always share how they feel. At the same time, it is clear there is a constant exchange of support between people with RA and their relatives.
Some relatives said they had problems fully understanding the significance of the diagnosis. The people in the relationship with RA did not always provide information, communication errors sometimes occurred. At the same time, an important and clear finding is that there is a constant exchange of support within these "couples".
These results come from the pilot study we conducted with five people with RA and their relatives. We are now looking forward to analyzing a larger body of material gathered from interviewing 16 people with RA and their relatives.
Why was the study carried out?
The research that exists in this subject is mostly based on the patients' point of view, as it is usually patients who are interviewed and talk about their experiences. The fact we now also include relatives in our study is important in several ways. Of course, we want to hear the voices of the relatives, because they also live with the diagnosis. We also want to know if there is a discrepancy between what is expressed: do both parties perceive everyday life in the same way? Do they think they understand each other? Is anything missing - information, support, knowledge? And if so, how can we fill this knowledge gap?
Has it given you more insights into your work?
As an occupational therapist, I know that the people around a patient have an important impact, and I am happy to have the opportunity to study this in more detail. I am also very pleased with the preliminary results, which clearly pointed to the constant exchange of support between partners, parents, and children as well as friends. At the same time, we see a tendency towards, among other things, communication failures and areas where people do not really share an opinion or do not fully understand the situation. This is obviously important to move forward with so that knowledge and understanding increases. What we want for everyone is an everyday life where they can be involved and choose to do what they think is important.
What do you see for future studies?
We are currently looking at a larger body of results with more interviews we have done with patients and relatives. A larger number of participants can provide clearer results and greater insights, so we are very happy and grateful that we have a wide range of material to start from. The pilot study where we looked at a small number of people has given us a clue as to what is going on, and it will be exciting to see what the results look like when we have all the interviews to start from.
My hope is that we can come up with good suggestions for interventions that can be directed at both patients and relatives in order for their everyday life to be as good and well-functioning as possible.
As an occupational therapist, I believe it is important that everyone, regardless of diagnosis or disability, should be able to perform the activities they want, be involved in the way they want, and have a well-functioning everyday life.