Written narratives to understand the experience of individuals living with fibromyalgia

Author:

Serrat Mayte12,Sora Beatriz3,Ureña Patricia2ORCID,Vall‐Roqué Helena45,Edo‐Gual Montserrat2,Nieto Rubén6ORCID

Affiliation:

1. Unitat d’Expertesa en Síndromes de Sensibilització Central Servei de Reumatologia Vall d’Hebron Hospital Universitari Barcelona Spain

2. Escoles Universitàries Gimbernat Autonomous University of Barcelona Barcelona Spain

3. Department of Psychology Faculty of Education Sciences and Psychology University Rovira i Virgili Tarragona Spain

4. Department of Clinical Psychology and Psychobiology Faculty of Psychology Universitat de Barcelona Barcelona Spain

5. Institut Universitari Avedis Donabedian Barcelona Catalonia Spain

6. Faculty of Psychology and Education Sciences Universitat Oberta de Catalunya Barcelona Spain

Abstract

AbstractPurposeTo explore the experiences of individuals with fibromyalgia (FM) through written narratives (WN) and to preliminarily investigate the potential value of these narratives for healthcare professionals in assessing the overall perceived severity and disability experienced by individuals with FM.Materials and methodsThis cross‐sectional study was conducted with 46 participants with a FM diagnosis. They were asked to complete a WN task that aimed to capture their personal experiences. The degree of severity and disability expressed in their texts was assessed by researchers, and participants were also asked to complete the Revised Fibromyalgia Impact Questionnaire (FIQR), the Hospital Anxiety and Depression Scale (HAD), and the Tampa Scale for Kinesophobia.Results and conclusionsEight main themes were identified after qualitatively analysing the narratives provided by participants: story of their illness, FM characteristics, other illnesses, impact, coping strategies, social support, pain triggers and treatments. Pain emerges as a profound symptom affecting mental, physical, and social well‐being, with diverse triggers and coping mechanisms. Participants highlighted difficulties in the diagnostic process, used multiple treatment strategies, and expressed a lack of understanding from healthcare professionals and society. There were significant correlations between researchers' assessments of severity and disability of the writings and FIQR and HAD scores. This study emphasises the value of narratives in capturing the multifaceted nature of FM experiences and hints at their potential for clinical understanding and management.

Publisher

Wiley

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