RésuméLa fibromyalgie est un syndrome douloureux chronique au cours duquel de nombreux domaines de la qualité de vie sont altérés. La prise en compte du vécu de la souffrance des patients est donc de première importance. Notre objectif principal est d'explorer l'expérience subjective de la maladie inscrite dans un contexte personnel, familial, social et médical. Cette démarche se veut qualitative, holistique et centrée sur le patient. Vingt-deux patients fibromyalgiques ont participé à des entretiens non directifs, soit individuellement, soit en groupe. La retranscription des entretiens est analysée pour identifier des unités qui, suivant
AbstractFibromyalgia is a non-articular rheumatological syndrome belonging to the group of painful musculoskeletal diseases affecting 2% of a mostly female population (90%). Fatigue, anxiety, depression, sleep disorders and poor quality of life are highly prevalent in these patients. Fibromyalgia is an individualized syndrome with an important psychological, familial and social impact and poses some intriguing questions that remain unanswered to researchers and clinicians. The definition of this disease is still incomplete and does not include all persons suffering from an « illness » of which it may be a component. Therefore, understanding the impact of fibromyalgia on quality of life could be a useful step to improve its diagnosis, follow-up and treatment. This article aims to explore the nature of subjective experience in fibromyalgia. Examples taken from interviews with people who have fibromyalgia will be used to illustrate these domains. Twenty-two patients (19 women and 3 men), 35 to 63 years old (mean: 50.4 6.9 years) from a fibromyalgia population diagnosed according to the criteria of the American College of Rheumatology, were recruited from a general outpatient clinic in the North of France. The interviews, either individually, or in group, were recorded or transcribed, and the responses were explored using a qualitative analysis to produce a thematic account. The examples used to illustrate the conceptual discussion in this article are drawn from the transcripts of these interviews. Each of the transcripts was analysed by noting relevant items, coding emergent themes and compiling a preliminary list of themes. Closely related themes were grouped together under appropriate higher-order themes and clustered into sets consisting of higher-order themes and sub-themes.This resulted in a complete hierarchically-organized summary list of themes. These various steps helped identify sixteen broad topics in the subjective experience of fibromyalgia which were distributed in five distinct fields: psychological consequences (impact on mood, helplessness feeling, consequences on self-concept), impact on everyday life (fatigability, functional difficulties, hyperactivity), interpersonal level (lack of understanding, isolation, impact on family, impact on intimacy), living with a medical course (physician/patient Page 3 of 20 A c c e p t e d M a n u s c r i p t 3 relation, medi...