Experiences and perspectives of adults living with systemic lupus erythematosus: thematic synthesis of qualitative studies

Bernadet Sutanto, Davinder Singh-Grewal, H. Patrick McNeil, Sean O'Neill, Jonathan C. Craig, Julie Jones, Allison Tong*

*Corresponding author for this work

Research output: Contribution to journalReview articlepeer-review

116 Citations (Scopus)


Objective Systemic lupus erythematosus (SLE) is a chronic inflammatory autoimmune disease that significantly impairs patients' quality of life and can be life threatening. This study aimed to describe the experiences and perspectives of adults living with SLE. Methods We conducted a systematic review and thematic synthesis of qualitative studies that explored the experiences of adults living with SLE. We searched MEDLINE, Embase, PsycINFO, CINAHL (to November week 1, 2012), Google Scholar, a thesis database, and reference lists of relevant articles. Results Forty-six studies involving 1,385 participants were included. Five themes were identified: restricted lifestyle (including subthemes of pervasive pain, debilitating fatigue, mental deterioration, disruptive episodic symptoms, and postponing parenthood), disrupted identity (gaining diagnostic closure, prognostic uncertainty, being a burden, hopelessness, heightened self-consciousness, fearing rejection, and guilt and punishment), societal stigma and indifference (illness trivialization, socially ostracized, and averse to differential treatment), gaining resilience (optimism, control and empowerment, being informed and involved, and valuing mutual understanding), and treatment adherence (preserving health, rapport with clinicians, negotiating medication regimens, and financial burden). Conclusion SLE has a severe and pervasive impact on patients' self-esteem and independence. Their physical and social functioning is limited and they feel anxious about their future. Patients perceive that SLE is trivialized, misunderstood, and stigmatized by their family, friends, and physicians, which intensifies their sense of isolation. Educational, psychosocial, and self-care interventions are needed to promote mental resilience, positive coping strategies, self-advocacy, and capacities for social participation, and thereby to achieve better treatment and health outcomes in patients with SLE.

Original languageEnglish
Pages (from-to)1752-1765
Number of pages14
JournalArthritis Care and Research
Issue number11
Publication statusPublished - Nov 2013
Externally publishedYes


Dive into the research topics of 'Experiences and perspectives of adults living with systemic lupus erythematosus: thematic synthesis of qualitative studies'. Together they form a unique fingerprint.

Cite this