Forgotten Needs of Patients with Systemic Lupus Erythematosus: A Qualitative Study in Iran

Abstract

Introduction: Systemic Lupus Erythematosus (SLE) is a chronic autoimmune disease which affects different body systems and different aspects of health. It has an irreversible course. Identifying the needs of SLE afflicted patients is the first step to help them manage and cope with their illness. Qualitative research among patients with SLE can identify aspects of the disease relevant to clinical research and practice. Aim: To explore the forgotten needs of patients with SLE. Materials and Methods: This qualitative study was conducted in Iran from April 2020 to March 2021 using conventional content analysis. All participants were patients with definite diagnosis of SLE purposefully selected from Iranian Lupus Association and Rheumatology Clinics in Kashan, Kerman and Bandarabbas, Iran. Data were collected with deep, semi-structured, and face-to-face interviews, which are focused on patients’ experiences of needs. Data collection continued until saturation was reached. Finally, 17 patients with SLE participated in this study. Data collection and data analysis were conducted concurrently. Data were analysed with conventional content analysis, and managed with the MAXQDA software 2020. Results: The forgotten needs of patients with SLE came into three main categories, namely social needs (with three subcategories), economic needs (with two subcategories), and need for self-control (with two subcategories). The seven subcategories of these three categories were the need for family support, the need for professional support by healthcare providers, the need for social support, the need for financial support by family members, the need for financial support by the government, the need for gaining autonomy, and the need for effective role performance. Conclusion: Patients with SLE have many forgotten psychological and socio-economic needs. Patient education, referrals to mental health professionals, and support organisations are important supplements to medical treatment. The findings can be used to develop strategies for providing quality care to patients with SLE and other chronic disabling conditions.

Keywords

• autoimmune
• autonomy
• disease burdens
• healthcare
• qualitative research
• socio-economic status
• support