Systemic Lupus Erythematosus
Experiences and Perspectives of Adults Living With Systemic Lupus Erythematosus: Thematic Synthesis of Qualitative Studies
Article first published online: 28 OCT 2013
Copyright © 2013 by the American College of Rheumatology
Arthritis Care & Research
Volume 65, Issue 11, pages 1752–1765, November 2013
How to Cite
Sutanto, B., Singh-Grewal, D., McNeil, H. P., O'Neill, S., Craig, J. C., Jones, J. and Tong, A. (2013), Experiences and Perspectives of Adults Living With Systemic Lupus Erythematosus: Thematic Synthesis of Qualitative Studies. Arthritis Care Res, 65: 1752–1765. doi: 10.1002/acr.22032
- Issue published online: 28 OCT 2013
- Article first published online: 28 OCT 2013
- Accepted manuscript online: 22 APR 2013 03:04PM EST
- Manuscript Accepted: 10 APR 2013
- Manuscript Received: 21 FEB 2013
- National Health and Medical Research Council Fellowship. Grant Number: ID 1037162
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.
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.
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).
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.