Patient's Perspective of Shared Decision-Making in Rheumatoid Arthritis Treatment: A Grounded Theory Exploration

Abstract

Current guidelines for rheumatoid arthritis (RA) treatment state that all decisions should be shared with the patient. Therefore, it becomes necessary to understand in-depth how patients with RA with different levels of health literacy and activation feel about sharing the decision with the health professional and how they experience this process. Grounded theory was used. Data collection included semi-structured interviews with 14 patients with RA. From the analysis of the patients’ narratives, four categories were built: “Accepting the changes: non-shared decisions”; “The patient's rationale: why not share?”; “Reaching the requirements for sharing the decision: expanding the patient’s autonomy"; and "Experiencing the sharing of the decision: ‘there is no point in changing, if I do not use it’." The results revealed that patients do not feel involved nor prepared to make decisions regarding their pharmacotherapy, even though they often engage in decision-making on their own. Some feel invisible as they are not included in the process. Those who feel unprepared for sharing the decision recognize that they could achieve it by acquiring the necessary knowledge. The theoretical model developed explains that shared decision-making is a way to consider the patient's experiences with the use of medicines and prevent them from making helpless decisions.