Abstract
Objective
Systemic lupus erythematosus (SLE) flares are psychosocially influenced, but there are few culturally sensitive models. This study aims to explore psychosocial factors contributing to lupus flares in women and co-construct a novel framework, grounded in their lived experiences, to guide clinical practice.
Methods
Utilizing Charmaz's constructivist grounded theory, we conducted a comprehensive study that included semi-structured interviews with 20 Iranian women who have SLE. Iterative open, focused, and theoretical coding was used to analyze data, with reflexive practices applied to address researchers’ cultural assumptions and maintain rigor. Thematic saturation was achieved, situating the developing model within participants’ lived experiences.
Results
A new four-domain model was constructed, representing a cyclical process reflecting lupus flare susceptibility. Predisposing Conditions consisted of marital dissatisfaction (e.g., felt spousal invalidation) and extrinsic stressors, with low socio-cultural status (economic distress, cultural divorce taboos) and stressful life events (infidelity, coerced marriages) shaping heightened distress. Mediating Factors—unresolved grief, sleep disturbance, and alexithymia—were viewed to exacerbate emotional and physiological reactions, with sleep disturbance often described by participants as coinciding with inflammatory markers. Responses included non-adaptive illness perception (e.g., “it is uncontrollable and there is no cure”), damaged sense of self, and conflicted parental roles, capturing socio-cultural effects. The Implication was difficulty in psychological adjustment to illness, linked with flare. Participants’ accounts highlighted a recurring theme linking relational stressors to illness misperceptions, shaped by marital conflict and perceived lack of support.
Conclusions
This culturally informed model reveals new associations among socio-cultural stressors, such as divorce taboos, and lupus flare vulnerability among Iranian women. While acknowledging limitations (the potential influence of anti-inflammatory medications on participants’ lived experiences, and also most participants were from lower socio-economic backgrounds), it suggested interventions (e.g., couple therapy, sleep therapy, grief counseling) and research on inflammatory markers. Reflexive grounding underpins equitable progress in SLE care.
Keywords
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Supplementary Material
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