Experiences and Perspectives of Adults Living With Systemic Lupus Erythematosus: Thematic Synthesis of Qualitative Studies

Abstract

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. INTRODUCTIONSystemic lupus erythematosus (SLE) is a chronic autoimmune disease with a relapsing and remitting course that can be life threatening. The disease has a peak incidence in females ages 15-40 years, and the prevalence of SLE is higher in nonwhite populations (1-4). Although treatment advances have reduced mortality rates in SLE, patients still experience impaired quality of life (QOL) and long-term morbidity (3,5-7).The debilitating pain, musculoskeletal manifestations, fatigue, and renal and cutaneous problems can limit patients' ability to work and participate in family and social activities (8 -10). The psychological and cognitive impact of SLE can have an adverse effect on physical functioning and disease activity (10 -12). Depression may be associated with greater physical disability, and low self-esteem has been found to be associated with greater cumulative organ damage (13). Moreover, studies have identified discordances between patients and clinicians in their perceptions of disease burden and activity, and consequently this can lead to poor treatment adherence, d...

The importance of resilience for treatment adhesion in patients with systemic lupus erythematosus

“…41 This is also an important ally to promote RS. 37 Therefore, RS related to diseases should be considered on the basis of risk and protection factors. In SLE, nontreatment adhesion can be considered as the risk factor, in the behavioral sense.…”

“…19 In patients with chronic disease such as SLE, treatment adhesion is an important protection behavior for disease-linked RS, because it helps in preventing disease worsening. 37 Therefore, nonadhesion can be considered as a risk behavior, because it may cause worsening of symptoms and increase the risk of hospitalisations. 19,[37][38][39] High RS scores are directly associated with better physical health and fewer symptoms, and inversely with depression and other psychiatric disturbances.…”

“…37 Therefore, nonadhesion can be considered as a risk behavior, because it may cause worsening of symptoms and increase the risk of hospitalisations. 19,[37][38][39] High RS scores are directly associated with better physical health and fewer symptoms, and inversely with depression and other psychiatric disturbances. It is also related to improvements in the quality of life.…”

“…42,19,32 Understanding the significance of RS in SLE management reiterates the need for adopting strategies that promote RS in such patients, thereby to attain better treatment and health outcomes. 37 These include educational, psychosocial, and self-care interventions to promote mental resilience, positive coping strategies, self-advocacy, and capacities for social participation. 37 Therefore, it is critical to consider the dynamic complexity related to the promotion of RS in SLE patients including the role of environmental, psychological, social, and internal factors as well as the articulation of the risk and protection factors.…”

“…37 These include educational, psychosocial, and self-care interventions to promote mental resilience, positive coping strategies, self-advocacy, and capacities for social participation. 37 Therefore, it is critical to consider the dynamic complexity related to the promotion of RS in SLE patients including the role of environmental, psychological, social, and internal factors as well as the articulation of the risk and protection factors. 11,32,33 Government policies to improve the access of health service are one of the external factors facilitating treatment adherence.…”