'Some of Them Were Created by People Who Have Never Had a Stroke': Understanding Desired Physical and Occupational Therapy Research Study Features for People With Chronic Stroke.

Background: People with stroke have historically had limited involvement in physical and occupational therapy research studies. Scientists and funders, rather than those most affected by the outcomes of research, largely make decisions about what studies should focus on. When research is not informed by the lived experiences of people with disability, researchers may ask the wrong questions or make incorrect assumptions about disability.

Objective: The purpose of this study was to identify desired features and characteristics for physical and occupational therapy research studies, from the perspective of people with chronic stroke.

Methods: We completed four iterative focus group discussions with a small group of adults with chronic stroke. The group was purposively sampled to ensure a range of prior stroke research experiences and stroke-related impairments. Thematic analysis was conducted on discussion content to identify desired study features.

Results: Four major desired study features were constructed: (1) Desire for relationships; (2) Understand the purpose; (3) Capability-oriented; and (4) Focused on individual participation needs. Participants expressed a desire for physical and occupational therapy studies to focus on what they can do (rather than what they cannot do) while also embracing the heterogeneity of stroke presentation. Studies involving elements of stroke community support and an understanding of potential benefits or information about stroke are also desired.

Conclusion: Collaborative research design can contribute to future research that is authentic and valuable to people with lived experience while concurrently lessening harmful disability narratives that are often unintentionally maintained by non-disabled researchers. By working with a group of adults with chronic stroke, we were able to identify valued study features that can be incorporated into future stroke research studies.

Lived experience or public contribution: Individuals with lived experience of stroke engaged in the discussions presented in this paper to collaboratively identify desired stroke study features. People with stroke were also involved in the developing interpretation of the presented data and reviewed the final version of the manuscript.