Life experiences with Systemic Lupus Erythematosus as reported in outpatients' perspective: a clinical-qualitative study in Brazil

Abstract

This study aimed to know lupus outpatients' life experiences, in terms of the meanings they attributed to several phenomena associated to the process of becoming ill. Systemic Lupus Erythematosus is a chronic inflammatory disease, probably caused by a combination of inborn/hereditary predispositions and environmental factors, which leads to an abnormal stimulation of the immune system. Lupus life experience is associated to important psychosocial adaptation mechanisms of affected people. This work had a clinical-qualitative design and was performed in the dermatology service of a Brazilian General Hospital. The method included purposive sample, and a semistructured interview with open-ended questions was applied. After categorizing the interviewees' discourse, the discussion employed psychodynamic theories. The patients' reactions included the attempt to rebuild their relationships with their own strengths. Lupus patients' familiar and interpersonal conflicts seem to be associated with the idea that family and friends do not understand the nature of the disease.

Effects of psychological interventions for patients with systemic lupus erythematosus: a systematic review and meta-analysis

“…3 They not only inevitably experience a range of somatic symptoms like pain and fatigue, 4,5 but also deal with existential, emotional, social and psychological difficulties such as reduced stress threshold, anxiety, depression and changes in social roles brought on by their disease. [6][7][8] All of these have been linked to reductions in work productivity and the worsening of lupus symptoms. [9][10][11][12] Nonetheless, patients may be reluctant to add further analgesics, opioids and antidepressants to the numerous agents necessary for basic management of SLE.…”

Uncertainty and Opportunities in Patients with Established Systemic Lupus Erythematosus: A Qualitative Study

“…However, positive experiences have also been identified in a few studies, such as personal growth (Wittmann, 2009) and the development of relationships (Boomsma et al, ; McElhone et al, ). Many studies reporting on the perspective of patients with SLE were conducted on people whose diagnosis had not been confirmed explicitly using the criteria specified by the American College of Rheumatology (ACR) for SLE, or were self‐reported and/or involved only women (Archenholtz et al, ; Baker and Wiginton, ; Bauernfeind et al, ; Goodman et al, ; Hale et al, .b; Mattje and Turato, ; McElhone et al, ; Mendelson, ; Ow et al, ; Pettersson et al, ; Schattner et al, ; Taïeb et al, ; Wiginton, ; Wittmann et al, ). The aim of this study was to describe how patients with established SLE experience their illness in everyday life, including both negative and positive aspects.…”

If You Dont Put it in Your Mind, then it Dont Matter: A Phenomenological Study of Coping Self-Efficacy in African American Women Diagnosed with Lupus

“…However, African Americans and women are still disproportionately impacted by lupus [46][47][48][49][50][51][52]. Persistent disparities may be due to current program's inability to cater to the unique needs of this demographic group [53][54][55][56][57]. The unique disease experiences and coping methods that African American lupus patients utilize further warrants contextualized and culturally competent programs in order to address the unique needs of this disparately affected population [26].…”