Abstract
BackgroundFibromyalgia (FM) is a contested, chronic widespread pain syndrome on which recommended therapies have short-lasting, moderate effects. Nevertheless, some patients become symptom-free, and their recovery experiences inspired us to develop a patient-centred recovery-oriented programme (PROP) delivered in a group format. Presently, we describe the theoretical rationale, purpose and content of the PROP, and its meanings for clinicians and patients.MethodsA multidisciplinary clinical team, a leader of a rehabilitation unit, and two researchers coproduced the PROP. Five full-day seminars were arranged to bridge research and clinical experiences. Qualitative studies about patients’ illness and recovery experiences and questions by researchers facilitated reflections on clinical experiences. The meaning of the PROP was examined using focus group and individual interviews with patients and clinicians immediately after completing the course and after 1–1.5 years.ResultsThe biopsychosocial model displays the research evidence across biological, mental and social impacts of FM, justifying that life stress can be an illness-maintaining factor in FM. The content addresses enabling patients to heal their own life and self by modifying life stress. Patients engage in making sense of the relationship between FM, themselves, and life through exploring, discovering and creating appropriate solutions for their daily social life. The PROP reduced uncertainties and brought a positive attitude and hope to the groups. After 1 year, patients are still engaged in recovery work, experience more good days, and maintain hope for further recovery. By sharing and reflecting on clinical experiences, a unified clinical team was established that continues to develop their competency.ConclusionTo our knowledge, the PROP is the first programme for patients with FM that results from a process of coproducing knowledge, is based on explicit theoretical rationale, and facilitates a personal experiential recovery process. PROP is found to be meaningful and to work by patients and clinicians.
Highlights
Fibromyalgia (FM) is a contested, chronic widespread pain syndrome on which recommended therapies have short-lasting, moderate effects
To our knowledge, the patient-centred recovery-oriented programme (PROP) is the first programme for patients with FM that results from a process of coproducing knowledge, is based on explicit theoretical rationale, and facilitates a personal experiential recovery process
Patients experience that health professionals (HPs) consider their symptoms to be imaginary or psychological, and this continues even after being diagnosed
Summary
Fibromyalgia (FM) is a contested, chronic widespread pain syndrome on which recommended therapies have short-lasting, moderate effects. FM cannot be verified by any blood or radiological measures [3]; it is based on patients’ symptom reports of long-lasting widespread musculoskeletal pain, fatigue, non-restorative sleep, concentration and memory problems, headache, depression and abdominal pain/cramps [7]. A survey in European countries, South Korea and Mexico showed that reaching a diagnosis of FM may take years [9] In this process, patients experience that health professionals (HPs) consider their symptoms to be imaginary or psychological, and this continues even after being diagnosed. Patients experience that health professionals (HPs) consider their symptoms to be imaginary or psychological, and this continues even after being diagnosed This highlights that the FM diagnosis is contested and does not necessarily legitimate patients as being sick [8]. It is not known how the biological abnormalities can be reversed; treatments aim at relieving symptoms, educating patients how to cope with them and promoting a healthy life style
Sign-in/Register to view highlights & summary Sign-in/Register to access full text options 
Talk to us
Join us for a 30 min session where you can share your feedback and ask us any queries you have
Schedule a call
