Dealing with fibromyalgia in the family context: a qualitative description study

Abstract

Headings purpose: Fibromyalgia (FM) is a chronic, nondegenerative disease with important limitations in patients. Its average global prevalence is 1.78%, and women are more affected than men (3:1). Due to the lack of objective diagnostic tools, it is a complex medical condition that is frequently unseen by patients’ relatives and doctors, which might nonetheless have a noticeable impact on the patient’s entourage. Material and Methods: This qualitative descriptive study aimed to elicit family members’ views on how FM affects their lives. It was conducted in two community health centers (one rural and one urban) from the Sagunto Health Department (Valencia Community, Spain). We included seven focus groups with 41 family members. We analyzed the data gathered with an inductive thematic semantic analysis approach using NVivo 12 software. Results: We identified four major themes: (1) fibromyalgia as a nosological entity or an invention that is always burdensome; (2) children and spouses as caregivers (or not); (3) adverse effects of fibromyalgia on the couple’s sexual life; and (4) harmful consequences of FM on the family economy. The findings showed a negative impact of the disease within the family context. Family members face complex and changing roles and difficulties when living with women with fibromyalgia. Conclusions: Relatives’ better understanding of the disease, greater acceptance of new family roles, and improvement of patients’ work conditions are all interventions that may help reduce the negative impact of FM in the family context.