Communicating about the experience of pain and fatigue in disability
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To examine the experiences of people with chronic disabling conditions as they communicate with health care providers about pain and fatigue.
Twenty-three adults with a variety of chronic disabling conditions participated in 5 focus groups. The following issues were raised: tell me about your pain/fatigue; what things go along with pain/fatigue? how do you talk about pain/fatigue with your health care provider (HCP)? What should your HCP know that they do not ask you about?
Results of qualitative analysis suggested two major themes. The first theme was labeled “Putting it in words” and suggests that both pain and fatigue are described in many ways, including the dimensions of type, intensity, level of interference and temporal aspects. Participants reported difficulty with responding to a single question that asked them to assign a number to their level of pain or fatigue. The second theme was labeled, “Let’s talk about it” and suggested that participants wanted HCPs “to listen and believe me when I describe my experience”. They wanted to be asked about how pain or fatigue interferes with life and about compensatory strategies rather than being asked to rate symptom intensity. Participants wished to be viewed as experts and to be actively involved in decisions about their health care.
Pain and fatigue were viewed as having many facets that are associated in complex ways with other aspects of the health/disability condition. From the participants’ perspective, assignment of a pain intensity rating does not represent the complexity of their pain experience. Suggestions are provided for HCPs when communicating about pain and fatigue with people with chronic conditions.
KeywordsPain measurement Fatigue Chronic disease Communication Focus groups
This study was funded in part by the University of Washington Multiple Sclerosis Rehabilitation Research and Training Center, funded by the National Institute on Disability and Rehabilitation Research (Grant #H133B031129) and by the National Institutes of Health Roadmap Initiative (Grant #5U01AR052171-03) to the University of Washington Center on Outcomes Research in Rehabilitation.
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