Enabling personal recovery from fibromyalgia – theoretical rationale, content and meaning of a person-centred, recovery-oriented programme

• Main Authors: Anne Marit Mengshoel, Åse Skarbø, Elisabeth Hasselknippe, Tamara Petterson, Nina Linnea Brandsar, Ellen Askmann, Ragnhild Ildstad, Lena Løseth, Merja Helena Sallinen
• Format: Article
• Language: English
• Published: BMC 2021-04-01
• Series: BMC Health Services Research
• Subjects: Fibromyalgia; Patient-centeredness; Patient education; Coproduced knowledge; Personal experiential recovery process
• Online Access: https://doi.org/10.1186/s12913-021-06295-6

Abstract Background Fibromyalgia (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. Methods A 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. Results The 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. Conclusion To 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.