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Family perceptions and experiences of living with patients with fibromyalgia syndrome

Abstract Purpose To explore the perception of the illness and the experience of the illness for relatives of fibromyalgia syndrome (FMS) patients. Materials and methods This qualitative interpretative study adopted a grounded theory research methodology with a purposive sample. We conducted a focus group with 11 family members of FMS patients. There were six men and five women, five were spouses and six were children (four husbands and one wife, and five daughters and one son). Results Three categories of family perceptions of FMS emerged: (1) manifestations of FMS; (2) FMS is regarded as a psychological problem; (3) FMS interferes with traditional gender roles. Three categories of family members’ experience of living with FMS patients were identified: (1) emotional concerns and exhaustion; (2) overprotective family members; and (3) escape coping. Conclusions Family members feel emotionally burdened, can be overprotective and over-involved and find it difficult to set limits ultimately succumbing to a vicious cycle of caregiving and emotional exhaustion from which they find it difficult to escape. As the perceptions and experiences of family members of FMS patients are not commonly studied, the present findings offer new insights for families and elucidate important points of intervention. Implications for rehabilitation Because family members tend to dismiss fibromyalgia as a psychological problem for which ignoring or distracting the patient is the best approach to coping, rehabilitation programs should give family members education and training to develop the ability to better understand fibromyalgia and reduce stereotypes about the condition. Rehabilitation programs should work to identify and manage marital and family systems dysfunction that may be interfering with fibromyalgia patients’ adjustment and quality of life. Family members often engage in maladaptive escape coping to manage the demands of living with patients with fibromyalgia, and rehabilitation professionals should be ready to engage and refer to allied specialists to assist family members in finding alternatives for more effective coping approaches that improve patient and family mental health and social relations. Rehabilitation programs for fibromyalgia patients should use a gender perspective and emphasize patient and spouse equality in activities of daily living as many patients and family members feel uncomfortable about not fulfilling traditional gender roles.