Scleroderma Patients’ Commitment to Illness Management

The management of chronic diseases is described as the “health challenge of the 21st century” by the World Health Organization. Patients’ active role in managing their illness is considered, by many, as central in addressing this challenge. This study explored and described, through scleroderma patients’ own perceptions and understanding, their commitment to illness management, including how they were involved in dealing with their illness and how they learned to do so. The role of social interactions, in particular, support groups, in this process was also investigated. Using a mixed-methods approach, 201 patients were surveyed, and 25 in-depth interviews were conducted. The quantitative results of this study indicated that 64% of patients were committed in managing their illness by being highly active in dealing with their illness. An increase in activation was associated with longer disease duration in the first decade of illness. Additionally, the patients with high social support were more active. The qualitative findings showed patients engaged with various types of work to mitigate the physical, emotional, psychological, relational, and financial impact of the illness. In doing so, patients employed four problem-solving strategies that they had learned by confronting problems in daily lives. These strategies were at the heart of their incidental and tacit learning of how to manage their illness. Only 32% of patients participated in support groups. Support group participants showed higher activation and considered these groups as providing support, learning opportunities, and venues to help other patients. This study indicates that patients’ commitment to management of their illness, far from being a static characteristic of patients, is a spectrum where patients are engaged in a process of complex negotiation with multiple needs of their illness, in tandem with their illness trajectory. Illness uncertainty, learning, and strategies to solve problems in managing the illness frame patients’ commitment and engagement. A preliminary model delineating these elements is provided.