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


Journal

Lupus
ISSN: 1477-0962
Titre abrégé: Lupus
Pays: England
ID NLM: 9204265

Informations de publication

Date de publication:
Oct 2022
Historique:
pubmed: 3 8 2022
medline: 20 10 2022
entrez: 2 8 2022
Statut: ppublish

Résumé

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. 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. 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. 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.

Identifiants

pubmed: 35916586
doi: 10.1177/09612033221115966
doi:

Types de publication

Journal Article

Langues

eng

Sous-ensembles de citation

IM

Pagination

1423-1433

Auteurs

Marie-Anastasie Aim (MA)

36900AP-HM, Delegation a la Recherche Clinique et a l'Innovation, Marseille, France.
128791Aix-Marseille Univ, LPS, Aix-en-Provence, France.

Viviane Queyrel (V)

37045CHU de Nice, Service de Rhumatologie, Nice, France.

Nathalie Tieulié (N)

37045CHU de Nice, Service de Rhumatologie, Nice, France.

Laurent Chiche (L)

Hopital Europeen, Service de Médecine Interne, Marseille, France.

Julien Faraut (J)

36900AP-HM, Delegation a la Recherche Clinique et a l'Innovation, Marseille, France.

Cécile Manet (C)

36900AP-HM, CHU Timone, Service de Medecine Interne, Marseille, France.

Nicolas Schleinitz (N)

36900AP-HM, CHU Timone, Service de Medecine Interne, Marseille, France.

Jean-Robert Harlé (JR)

36900AP-HM, CHU Timone, Service de Medecine Interne, Marseille, France.

Noémie Jourde-Chiche (N)

36900AP-HM, CHU Conception, Service de Nephrologie, Marseille, France.
128791Aix-Marseille Univ, C2VN, INSERM, INRAE, Marseille, France.

Lionel Dany (L)

128791Aix-Marseille Univ, LPS, Aix-en-Provence, France.
36900AP-HM, CHU Timone, Service d'Oncologie Medicale, Marseille, France.

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Classifications MeSH