Importance of temporality and context in relation to life habit restrictions among patients with systemic lupus erythematosus: A psychosocial qualitative study.

Autor: Aim MA; 36900AP-HM, Delegation a la Recherche Clinique et a l'Innovation, Marseille, France.; 128791Aix-Marseille Univ, LPS, Aix-en-Provence, France., Queyrel V; 37045CHU de Nice, Service de Rhumatologie, Nice, France., Tieulié N; 37045CHU de Nice, Service de Rhumatologie, Nice, France., Chiche L; Hopital Europeen, Service de Médecine Interne, Marseille, France., Faraut J; 36900AP-HM, Delegation a la Recherche Clinique et a l'Innovation, Marseille, France., Manet C; 36900AP-HM, CHU Timone, Service de Medecine Interne, Marseille, France., Schleinitz N; 36900AP-HM, CHU Timone, Service de Medecine Interne, Marseille, France., Harlé JR; 36900AP-HM, CHU Timone, Service de Medecine Interne, Marseille, France., Jourde-Chiche N; 36900AP-HM, CHU Conception, Service de Nephrologie, Marseille, France.; 128791Aix-Marseille Univ, C2VN, INSERM, INRAE, Marseille, France., Dany L; 128791Aix-Marseille Univ, LPS, Aix-en-Provence, France.; 36900AP-HM, CHU Timone, Service d'Oncologie Medicale, Marseille, France.
Jazyk: angličtina
Zdroj: Lupus [Lupus] 2022 Oct; Vol. 31 (12), pp. 1423-1433. Date of Electronic Publication: 2022 Aug 02.
DOI: 10.1177/09612033221115966
Abstrakt: Objective: Life habits (LH) encompass an individual's engagement in daily activities such as nutrition, fitness, personal care, communication, housing, and mobility, along with his/her social role (responsibility, interpersonal relationships, community life, education, employment, and recreation). This qualitative study explores the nature and context of LH restrictions in systemic lupus erythematosus (SLE) individuals across their SLE journey.
Methods: Narrative interviews were conducted with adult SLE patients. Interview transcripts were subjected to a thematic content analysis, using the Disability Creation Process model as a framework.
Results: Forty participants were interviewed. Three major themes were highlighted: (1) Temporality, capabilities, and environmental contexts: although all participants experienced LH restrictions at some point, the expression of these limitations depended on the individual's and SLE disease characteristics as well as on temporal (time of life and lupus course) and environmental (material, social, and societal) contexts. (2) Identity issues, illness stigma, and (fear of) discriminations: LH were discussed through the lens of participants' social roles and identities. While illness stigma can influence social relations, it is also expressed at a societal level. (3) Masking and minimizing strategies: due to illness stigma and fear of discrimination, participants developed strategies to manage their relationships, including masking and minimization. Their use was both advantageous and disadvantageous regarding LH.
Conclusions: For individuals with SLE, LH restrictions must be considered as an ongoing process that takes place within specific contexts. Our findings provide many opportunities for interventions that can benefit patients and their families, as well as healthcare providers.
Databáze: MEDLINE
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