Stroke Survivors’ Experiences and Needs during the Decision-making Process Considering Rehabilitation Options: A Pilot Descriptive Study in Japan

Abstract

Objectives: The purposes of the present study were to describe stroke survivors’ experiences and to identify their support needs when faced with decisions about rehabilitation.

Methods: Based on the Ottawa Decision Support Framework needs assessment, semi-structured interviews were conducted with 15 stroke survivors. The degree of participation in decision-making and anxiety were assessed quantitatively. All interview transcripts describing their experiences and emotions were qualitatively analyzed.

Results: All participants had hemiplegia but could perform their daily activities unassisted. Most participants played an active role in decision-making, but 13 patients felt some anxiety when choosing chronic-phase rehabilitation programs. Qualitative analysis identified 19 codes, of which 13 were categorized into the four factors of knowledge, values, certainty, and support. The codes related to patient feelings of anxiety and insecurity about making decisions were “lack of information about options,” difficulty in “selecting appropriate information,” and “lack of support” from medical staff. Trustworthy specialist support and prior knowledge of rehabilitation were identified as factors that could help patients feel more secure about making decisions.

Conclusions: To support stroke survivors in their decision-making about rehabilitation, each patient should be given a long-term perspective on stroke rehabilitation and sufficient information on rehabilitation options tailored to their individual needs. Decision aids for stroke survivors built on these findings will be used in clinical practice, and their efficacy will be verified in future studies.