Family aspects to consider when creating user-centered care models for diabetics

Abstract

The purpose of this article is to investigate what personal aspects of families of people with diabetes have to be taken into account when developing user-centered care models from the perspective of the self-management of the disease. This data will help in the creation of better services, that empower patients in their self-management and therefore lessen the burden on the European Healthcare system, while improving the quality of health. The research on this personal aspects employs a qualitative method, multiple case study. We conducted six semi-structured interviews within two cases, where the diabetic and two relatives have been interviewed. The interviews have been transcribed and analysed with an in-depth coding, using grounded theory to discover patterns. The relations of these codes are visualized as schemes in the following categories: personal aspects, managing health and e-health services. To illustrate the results, a framework with the most important findings inside the categories and the relationships among them is created. In relation with the personal aspects, we have found that for the family crisis moments and the worries that come with the disease are crucial. These worries are relieved by knowing the status of health, thanks to information about diabetes and verbalized communication with, among others, professionals. This helps the family and the diabetic cope with diabetes. Regarding the management of diabetes, we show in the framework developed the importance of the tools for diabetes, and the relation these have with flexibility of the treatment and control of the disease, also this is directly related with the experience of diabetes in daily life. Finally, in the implications we discuss what user-centered care models have to consider in order to include the personal aspects of the family of people with diabetes: Handling worries regarding crisis moments, Receiving information and talking about the status of health, Involvement of a health person and Self Management tools. After this, we elaborate on the limitations of the research and the future research possibilities.