What support is needed to self-manage a rheumatic disorder: a qualitative study

Background: Today, patients are expected to take an active role in the form of self-management. Given the burden of a rheumatic disorder, the patients cannot be expected to self-manage on their own. In order to develop self-management interventions that fit patients' needs and preferences, it is essential to examine patients' perspective on how support can be optimized. This study aimed to identify support needs of outpatients with rheumatic disorders and preferences for who should provide self-management support. Methods: A qualitative study was conducted using focus groups and individual interviews with outpatients with rheumatic disorders treated in a Dutch university hospital. Interview data was analysed with Directed Content Analysis and coded with predetermined codes derived from our model about support needs of chronically ill patients. This model distinguished three types of support: instrumental, psychosocial and relational support. Results: Fourteen patients participated in two focus group interviews and six were interviewed individually. Most patients preferred an active role in self-management. Nonetheless, they notably needed support in developing skills for self-managing their rheumatic disorder in daily life. The extent of support needs was influenced by disease stage, presence of symptoms and changes in one's situation. A trusted relationship and partnership were conditional for receiving any kind of professional support. Patients wanted to be seen as experienced experts of living with a rheumatic disorder. Acquiring specific disease-related knowledge, learning how to deal with symptoms and fluctuations, talking about emotional aspects, and discussing daily life issues and disease-related information were identified as important elements of self-management support. It was considered crucial that support be tailored to individual needs and expertise. Professionals and relatives were preferred as support givers. Few patients desired support from fellow patients. Conclusion: Self-management was primarily seen as patient's own task. Above all, patients wanted to be seen as the experienced experts. Professionals' self-management support should be focused on coaching patients in developing problem-solving skills, for which practical tools and training are needed.