Ideally, rheumatoid arthritis patients should set themselves personal life goals.
Provided they are flexible in the pursuit of those goals, their sense of well-being will grow. So says Roos Arends, a behavioural scientist who has developed a new course for patients with rheumatoid arthritis. Dr Weiss was awarded her PhD at the University of Twente’s Faculty of Behavioural, Management and Social Sciences on Thursday 6 October.
Three out of every hundred Dutch people suffer from inflammatory rheumatism. By 2030, this number is expected to have increased by more than 20%, due to demographic developments in population structure. It is often thought that these patients eventually learn to cope with their disorder, by means of trial and error. But Roos Arends has found that, for a quarter of them, this does not apply. “They suffer from long-term mental problems, such as anxiety or depression, or feel that their life is not worth living.”
Four strategies
“Yet there is no reason why people with a chronic condition should not have an enjoyable life”, says Dr Arends. “The way they deal with threats to their personal goals is hugely important. These goals include functioning independently, work, education, leisure time, social contacts. Their chronic disease impacts all these domains of life, and people deal with this differently.”
This behavioural scientist from the University of Twente examined the strategies people use to deal with those goals, and how that relates to their mental health. To make the most of life with rheumatoid arthritis, an individual must be able to employ four different strategies, each at the right time: persevere, adjust your goals, let go, and find new alternatives. Those who are able to use several different strategies, who have an extensive repertoire, and who show flexibility, were found to enjoy the best mental health. On the other hand, others just cling to their own goals and are unable to lower their sights to match their circumstances.
The Purposeful! course
In cooperation with rheumatoid arthritis patients and a nurse, Roos Arends has developed the Purposeful! course. This is now being offered to patients, and studied, at four hospitals: the Twente Medical Spectrum, the St. Elisabeth Hospital at Tilburg, the Queen Beatrix Regional Hospital at Winterswijk, and the Gelderse Vallei Hospital at Ede. After completing the course, those who had taken part indicated that they were experiencing more positive feelings. In addition to the focus on awareness and on dealing with personal goals, they particularly appreciated the people-oriented approach, says Dr Arends. “The course does not focus on the disease, nor even on reducing pain or fatigue. It is all about the big picture of the lives people lead, and the aspects they themselves find important. For example, imagine that rheumatoid arthritis compels someone to give up their hobby, then a healthcare provider or course instructor will have to focus on that. People have to deal with their disorder 365 days a year, but they may only visit a doctor twice a year.”
Resilience
According to Roos Arends, in many current self-management courses, it is the lack of focus on that very acceptance and modification or adjustment of personal goals that tends to thwart patients’ efforts. “All too often, the view is that people should try to stay as self-efficacious as possible, after all, the healthcare system is already overburdened. But what we found here was quite different and, in view of previous studies, entirely unexpected. While setting yourself personal life goals is undoubtedly important, adjusting those goals from time to time can also make you more resilient. Perseverance is not always the best approach.”
(Dr Arends’ doctoral research was carried out within the Department of Psychology, Health and Technology, part of the Institute for Innovation and Governance Studies research institute at the University of Twente.)
