Studies of early inflammatory arthritis show that many people tend to normalize and self-manage initial symptoms, and delay seeking healthcare services until symptoms interfere with activities and routines in their daily life.
Activity disruption — doing things differently or not at all — is an important indicator of disease status, according to Catherine L. Backman, PhD, Senior Scientist, Arthritis Research Canada, and Professor of Occupational Science and Occupational Therapy at the University of British Columbia in Vancouver. Dr. Backman will deliver this year’s ARHP Distinguished Lecture: Doing, Being, Participating: State of the Science on Monday from 9:00 – 10:00 am in room 140A.
In her lecture, Dr. Backman will summarize narrative evidence of patient experiences of the scale and impact of activity/occupational disruption among adults living with arthritis and describe examples of occupational adaptation and social role participation that sustain well-being and living well in the presence of arthritis. She also will discuss client/patient-centered strategies for assessing and accommodating occupational disruption.
“The traditional expectation is that occupational therapists help people do stuff, everyday activities like getting dressed or participating in school, getting back to work or maintaining their work in spite of the limitations that arthritis might create for someone,” Dr. Backman said. “The hidden work of occupational therapists, however, is not so much helping people do specific tasks, but be the person they want to become.”
For most people, she said, the ability to engage in the things they want, need, or are expected to do is crucial to living well and sustaining their identity as autonomous, healthy, and productive individuals. In studies she conducted of mothers with arthritis, Dr. Backman found that, for many, the challenges of doing, or not being able to do, some of the commonly expected “mom tasks” directly affected both their physical and emotional health.
“Certain tasks associated with being a mother can be quite difficult for women living with inflammatory types of arthritis, especially if the disease is not well controlled,” Dr. Backman said. “Getting a two-year-old into a car seat when they don’t want to, for example, can be a challenge for any mom, but it can especially be a challenge for someone with a disability affecting their hands. But it doesn’t mean they can’t be a mom or have a satisfactory sense of self or competence as a mother — it just means they need to be a mother differently.”
An important step in raising awareness of the relationship between emotional and physical health, Dr. Backman said, occurred about 15 years ago when the World Health Organization revised its classification of functioning and disability.
“The international classification of functioning, disability, and handicap was revised to speak not just to body structures and function, but to include activities and activity disruption and participation in life roles and participation restrictions as being critical to health,” she said.
Advances in therapies and treatments for arthritis have also played an important role in helping both patients and providers understand and manage quality-of-life expectations, Dr. Backman said.
“A couple of decades ago, there was different medical management, and inflammatory types of arthritis could be far more disabling conditions than they are today,” she said. “So it may not be that surprising that goals were related to very small and specific activities. While we wanted to control pain and inflammation, we probably didn’t pay that much attention to how people had to concurrently manage their arthritis and their lives.”
Today, she said, more people are taking an occupational perspective toward participation and thinking about how arthritis patients participate and sustain their wellness and well-being.
“For clinicians and other health professionals working with arthritis patients, appreciating the profound effect of participation restrictions, big and small, on people’s sense of competence and self-identity is critical to planning tailored and meaningful psychosocial interventions,” Dr. Backman said. “We have to remember that people living with arthritis are only going to occasionally see health professionals. The rest of the time they’re living their life without our help, so we need to be aware of the strategies or suggestions that we can provide to help people smooth out those peaks and valleys of disruptions that occur as a result of arthritis.”
CLINICAL PRACTICE TRACK
ARHP Distinguished Lecture: Doing, Being, Participating: State of the Science
9:00 – 10:00 am Monday • Room 140A