L’expérience subjective de patients avec une fibromyalgie : analyse qualitative

Abstract

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...

“I'm not the woman I was”: Women's perceptions of the effects of fibromyalgia on private life

“…Results align with previous studies showing that the loss of autonomy of those affected and their dependency on others triggered off misunderstandings and inter-personal conflicts within the home (Aïni, Curelli-Chéreau, & Antoine, 2010). As other authors found, the handicap caused by FM makes the relationship with their family and partner (Aïni et al, 2010;Cunningham & Jillings, 2006;Soderberg & Lundman, 2001).…”

“…As other authors found, the handicap caused by FM makes the relationship with their family and partner (Aïni et al, 2010;Cunningham & Jillings, 2006;Soderberg & Lundman, 2001). Women interviewed described additional difficulties in the marital relationship and the need of support from their husbands; support from their partners tended to be anecdotic; nevertheless, in other studies husbands adopted the role of carer (Rodham, Rance, & Blake, 2010;S.…”

“…It becomes apparent from the women's interviews that not only they themselves, but their partners as well, must go through a period of adaptation to redefine who they are from the onset of the illness, as the identity and the relationship established between them changes Their loss of identity as the women they used to be, together with the loss of autonomy in sexual relations, leads them to the point of feeling as if they were a different wife. Participants from other studies also felt that the deterioriation of sexual relations between the couple leads to the deterioration of the relationship as a whole (Aïni et al, 2010). Women interviewed felt they were …”

Spécificité des stratégies de coping des patients en rémission de la maladie de Crohn : une étude qualitative

“…Ainsi, on rencontre fréquemment chez les patients atteints de la MC, un effondrement dépressif en lien avec l'incapacité pour les patients à maintenir leur profession dû aux symptômes de la maladie. Cette perte de statut de travailleur actif est vécue comme une fragilisation des processus identitaires, traduite par un sentiment d'auto dévalorisation et une incapacité à se maintenir dans les rôles familiaux et sociaux établis auparavant (Aïni, Curelli-Chéreau, & Antoine, 2010). En parallèle, les patients ressentent un sentiment d'injustice exacerbé par la méconnaissance de l'étiologie de la maladie (McCormick et al, 2012).…”

Percepciones de pacientes con fibromialgia sobre el impacto de la enfermedad en el ámbito laboral

“…En España, se estima que la padece el 2,4% de la población (3,4% mujeres y 0,5% hombres) 1,2 . Los sín-tomas principales de dolor, fatiga crónica, dificultades para dormir y dificultad de concentración y atención afectan a la habilidad funcional de los pacientes, con un claro impacto negativo en el desarrollo de actividades de su vida cotidiana y laborales 3,4 . Los pacientes de FM pueden desarrollar un grado de incapacidad suficiente para impedirles continuar trabajando 5,6 ; se ha estimado que entre el 25 y 50% abandonan o pierden su empleo como repercusión de esta enfermedad 7---9 .…”