Mattje, Gilberto Dari, & Turato, Egberto Ribeiro. (2006). Life experiences with Systemic Lupus

Erythematosus as reported in outpatients' perspective: a clinical-qualitative study in Brazil. Revista Latino-Americana de Enfermagem, 14(4), 475-482. Retrieved from http://www.scielo.br/scielo.php?script=sci_arttext&pid=S0104-11692006000400002

According to Mattje & Turato (2006), while the physical mechanisms of lupus have been much studied (but are still ill-understood), the personal, lived experiences of patients suffering from the disorder have not been given adequate attention in clinical studies. The purpose of this qualitative research was to allow patients with lupus to articulate how the autoimmune disorder had impacted their daily lives. From a medical perspective, "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" (Mattje & Turato 2006). However, because the illness manifests itself in many very different ways, depending upon the patient, patients often do not feel that either healthcare providers or family members fully comprehend the degree to which it impacts their lives. Lupus has even been given the nickname in the healthcare profession as the "great imitator, because its manifestations vary so widely that it is often erroneously confounded with other disorders" and it "affects several organs: skin, joints, kidneys, lungs, nervous system, and others" (Mattje & Turato 2006). The severity of this chronic inflammatory disorder can vary widely from patient to patient and over the course of the patient's own lifetime.

Like most autoimmune disorders, lupus is far more common in women than in men which can further cause the symptoms to be ignored as psychosomatic by clinicians. Lupus can be confirmed with a series of blood tests but diagnosis is still often delayed by a lack of clinical recognition. There is no cure for lupus, only the ability to manage it. Chronic fatigue and joint pain are its most common presenting symptoms that interfere with a patient's functionality. To let patients speak for themselves to the maximum degree, a qualitative design was chosen. Qualitative research is inductive in nature and focuses on small patient populations, versus data-driven quantitative research which has predetermined research questions and categories and makes use of the experimental method. The researchers describe their approach as a clinical-qualitative design (a case study method) and subjects were drawn from a single dermatology service of a Brazilian general hospital. The sample was purposive and made use of semi-structured interviews with open-ended questions to allow the maximum degree of patient direction over the results.

To ensure that the study had value for the patients, as well as soliciting information from them from interviews, psychodynamic therapy was offered in conjunction with the study. Although qualitative, the researchers stated that they hoped that the results of the study would give them information that would be useful to clinicians in advising lupus patients, such as the fact that exercise can help alleviate joint pain. Qualitative studies are usually first undertaken because of cost and logistical considerations such as size of quantitative studies. Qualitative studies also help shape the more directive questioning of quantitative research. The diffuse nature of lupus and of functionality of patients was of concern in the study. "Clinicians themselves allude that living with lupus surely means learning to deal with a chronic disease that can limit activities, due to fatigue and joint pains, as well as leading with depression, loss of hope, irritability and anger, due to a certain unpredictability of lupus and an occasional lack of response to treatment" (Mattje & Turato 2006). The unpredictability of the disease itself further underlines the need for qualitative approaches to better understand it.

Patients in the study were not selected to be demographically representational but were selected from a single clinic. Patients were selected via researchers asking for volunteers, once again underlining the humanistic, ethical focus of this…