Abstract
BackgroundToday, 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.MethodsA 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.ResultsFourteen 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.ConclusionSelf-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.
Highlights
IntroductionPatients 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
Today, patients are expected to take an active role in the form of self-management
Even though professionals were seen as the medical experts, patients wanted professionals to “respect the choices” (FG1-R8) they make. They wanted to be seen as experienced experts of living with a rheumatic disorder
Summary
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. Having a rheumatic disorder requires ongoing psychosocial adjustment and behavioral change to deal with fluctuations, pain, restricted mobility and fatigue in daily life [1, 2]. It may affect one’s mood, self-esteem, role, relationships, and control perceptions [3]. The self-management tasks patients perceive may be partly disease specific, recent research indicates that self-management support does not necessarily need to be disease-specific since disease type only had a small effect on selfmanagement tasks, and an even smaller effect on support needs [19] Factors such as flare-up of symptoms, cultural background, gender, and changes in the patient’s personal situation, seem to influence one’s support needs [17]
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