Rocky Paths: Family and Society as a Double Edged Sword in the Strategies of Patients in Coping with Scleroderma: A Qualitative Descriptive Study

Abstract

Background: Family and society, as key sources of support in the patient adaptation process, can play a substantial role. However, the contribution of family and society to patients’ coping methods, encompassing both positive and negative effects, has not been sufficiently studied. This qualitative study explores the challenges of living with scleroderma, the related strategies, and the dual impact of family and society on patients’ coping strategies. Materials and Methods: This study was conducted using a qualitative approach with conventional content analysis in 2023–2024. Data were collected via semi‑structured interviews with 22 patients and eight family caregivers who were selected through purposive sampling in Ahvaz, Iran. The interviews continued until data saturation was achieved. All interviews were analyzed using Graneheim and Lundman’s approach. Results: The findings included eight categories and 22 subcategories. The categories include the following: disrupted cohesion and functional breakdown, psychological stressors, family support dynamics, disrupted support circles, dynamic social support, gaps in the society support network, comprehensive care management, and maladaptive coping mechanisms. Conclusions: This study highlights the absence of an independent scleroderma association in Iran and underscores the role of nurses, evidence‑based platforms, and media advocacy in amplifying patients’ voices. Addressing stigma, cultural misconceptions, social isolation, and financial hardship requires targeted interventions and policymaking. Particularly, nursing interventions, through educational workshops and innovative tools such as AI‑based platforms, can enhance patients’ social and informational support.