In Indonesia, the exact number of people with lupus is unknown. The increasing number of lupus cases needs to be watched by the community by paying special attention because the diagnosis of lupus disease is not easy and is often late.
Systemic Lupus Erythematosus (SLE), known as the “thousand faces” disease, is a chronic autoimmune inflammatory disease of unclear cause, with a wide range of clinical features and a diverse disease course. This causes frequent errors in recognizing lupus disease, leading to delays in diagnosis and case management (Data and Information Center, Ministry of Health, 2017).
With the improvement of treatment technology, the morbidity rate of SLE tends to decrease, but the quality of life of SLE patients remains low. A patient’s assessment of the aspects of his/her life that are affected by the disease and treatment procedures (health-related quality of life) determines the level of well-being and life satisfaction of SLE patients.
“A patient’s assessment of his or her quality of life is very important so that the patient feels well despite being sick. Health-related quality of life is influenced by the cultural context in which patients live. The model of health-related quality of life of SLE patients tends to pay less attention to cultural factors, especially in SLE patients who live in a religiously influenced culture such as Indonesia,” said Suci Nugraha when presenting her dissertation entitled “The Role of Religiosity, Spiritual Support and Depression as Determinants of Quality of Life Related to the Health of SLE Patients”, at an open doctoral promotion session held by the Doctoral Study Program, Faculty of Psychology, Universitas Indonesia (F.Psy UI) on Friday (7/1/2022).
The aim of Suci’s research was to explore a model of health-related quality of life for SLE patients living in the Indonesian cultural context, and test the fit of the theoretical model with empirical data. The study used a mixed-methods exploratory sequential design that was conducted in two stages of research.
In the first phase of qualitative research using Focus Group Discussion (FGD) techniques, Suci explored health-related quality of life from the patient’s perspective. “The results obtained themes regarding changes in various aspects of patients’ lives. What makes it difficult for them to fulfill their daily functions and roles, such as feelings of sadness and fear, belief in help from God, and support from family and friends,” she said.
In the second stage, a model was built based on the results of the first study, namely a psychosocial model that explores the role of religion in shaping the health-related quality of life of SLE patients living in the Indonesian cultural context. “Religion is an integral variable in the culture of Indonesian society that contributes consistently to shaping mental health. The role of religion in the model is measured through religiosity and spiritual support,” said Suci.
In the second study tested was a model that explained the mechanism of the relationship between religiosity, spiritual support, and depression on the quality of life of SLE patients. The results of analysis with a structural equation model of 328 research subjects recruited by convinience sampling revealed that the theoretical model of health-related quality of life of SLE patients was in accordance with empirical data. This model explains that religiosity directly and indirectly affects the health-related quality of life of SLE patients.
“The indirect relationship between religiosity and health-related quality of life occurs through several pathways, namely religiosity affects depression and then depression affects health-related quality of life. Meanwhile, spiritual support is a moderating variable that affects the strength of the relationship between religiosity and depression,” said the psychology consultant at the Integrated Psychology Service Unit of the Islamic University of Bandung and a psychologist who observes lupus.
The doctoral promotion session was chaired by Dean of F.Psi Dr. Bagus Takwin, M.Hum., Psychologist, with supervisors, Prof. Dr. Elizabeth Kristi Poerwandari, M.Hum., as Promoter, and Dra. Dharmayati B. Utoyo, MA, PhD, as the Co-Promoter. The examiners in the session were Prof. Dr. Guritnaningsih, Psychologist (chief examiner), Dr. Octaviani Indrasari Ranakusuma, M.Si., Psychologist, Dr. Adriana Soekandar, M.S., Psychologist, Sali Rahadi Asih, M.Psi., MGPCC., Ph.D., Psychologist, and Dr. Dewi Maulina, M.Psi., Psychologist.
Author: Mariana Sumanti | Editor: Amelita Lusia
