Patient and therapist perspectives on physical therapy outcome measures and engagement after stroke: A case study.

BACKGROUND: Outcome measures are highly recommended in stroke physical therapy, however, most of the existing research has been performed from the provider perspective. Understanding the patient perspective of outcome measures in conjunction with the therapist perspective may help to better support patient engagement and autonomy. PURPOSE: The purpose of this study was to explore patient and therapist perspectives on physical therapy outcome measures post-stroke. METHODS: This qualitative case study of a Canadian rehabilitation facility is based on patient-oriented research principles, with three patient partners embedded in the research team. Data collection included chart reviews, observations of physical therapy sessions, patient interviews, and therapist interviews. Field notes of observations and interview transcripts were analyzed using thematic analysis. RESULTS: Ten patients and seven therapists participated. Analysis revealed the following two themes: 1) tracking progress; and 2) partnership. Tracking progress included the expectations patients had for improvement, the importance of objectively measuring change and the functional improvement observed day by day. Partnership described the relationship between therapist and patient including communication, encouragement and affirmation, the therapist as expert and the gradual shift in autonomy from therapist to patient. CONCLUSION: Patients valued the objective results of outcome measures and were encouraged by measurable changes. Maximizing the use of physical therapy outcome measures may improve patient engagement and support relational autonomy.

Stroke survivors partner in research: a case example of collaborative processes.

The Canadian Strategy for Patient-Oriented Research supports the inclusion of patients as partners throughout the research process. Purposeful and meaningful engagement of patient partners after stroke can present unique challenges due to the potential impacts on cognition, communication, or mobility. The purpose of this paper is to provide a case example of working together with three individuals who bring their post-stroke lived experience, including one person with aphasia, from study design through to dissemination. The designed and executed qualitative research was the purpose of this collaboration; this paper describes the collaborative process rather than the outcomes of the original research. The Strategy for Patient-Oriented Research Patient Engagement Framework was followed to engage the patient partners fully as part of the research team. Patient partners were involved at regularly scheduled team meetings and provided guidance on key aspects of project design and decision-making. The patient partners provided robust and important contributions to many aspects of the research, including shaping interview questions, assisting with thematic analysis, and contributing to the dissemination of research findings. Effective team dynamics were fostered by focusing on the value of the lived experience knowledge, using best-practice communication strategies, as well as taking time for relationship-building and story sharing. With appropriate support and guidance, the individuals who have experienced stroke were valuable contributing members of our research team.

Whenever possible, including patients as partners in the research process can improve the quality of the research and the relevance of the results. Sometimes, there can be challenges when engaging people with lived experience in health research. For example, after a stroke, some patients can have trouble moving, thinking, or speaking. The purpose of this paper is to describe the processes used by our research team, comprised of two researchers and three patient partners with lived experience who had knowledge and insights into surviving a moderate to severe stroke. The research was a graduate student project exploring what patients think of physical therapy tests and measures used post-stroke. This article describes the process, rather than the outcomes of that research. We collaborated through virtual meetings, which were held every time decisions about the research had to be made or where feedback was required. The patient partners improved the interview question guide, helped to analyze the data, and helped to communicate the research findings. We found several strategies that helped us to be successful, including focusing on the value of the patient perspective and insights, taking time to build relationships, and allowing time to share stories. We also took special care to follow recommendations about communication to make sure that all the patient partners understood the project aim and activities that we were working on together. We feel this paper shows how patients who have had a stroke can collaborate as valued members of health research teams.