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Living with systemic lupus erythematosus: A patient engagement perspective
Author(s) -
Mazzoni Davide,
Cornet Alain,
Leeuw Bernadette,
Myllys Kirsi,
Cicognani Elvira
Publication year - 2018
Publication title -
musculoskeletal care
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.628
H-Index - 28
eISSN - 1557-0681
pISSN - 1478-2189
DOI - 10.1002/msc.1208
Subject(s) - medicine , cognitive reframing , patient experience , thematic analysis , focus group , health care , qualitative research , psychology , psychotherapist , social science , economic growth , business , marketing , sociology , economics
Patient engagement is recognized as a crucial component of high‐quality healthcare services. Among rheumatic diseases, systemic lupus erythematosus (SLE) appears particularly challenging for the engagement of patients in their own care. According to the patient health engagement (PHE) model, patient engagement is a dynamic phenomenon that proceeds through four experiential positions (blackout, arousal, adhesion and eudaimonic project). The aim of the present study was to describe the engagement process from the point of view and the experiences of SLE patients. Ten in‐depth interviews and four focus groups were conducted with an international sample of SLE patients from different European countries. Transcripts were analysed through thematic content analysis. Findings showed that a fully engaged patient results from reframing emotional, cognitive and behavioural dimensions. The advances along the process depends on how the patient succeeds in each position. In conclusion, PHE represents an appropriate model by which to understand the engagement process of SLE patients. In order to meet patients’ needs, healthcare providers and patient support groups should consider the specific position of SLE patients, providing adequate and tailored support.