Barriers to recruitment and participation in physical rehabilitation research: a mixed methods study among people with multiple sclerosis

Pretty, Ryan W. (2020) Barriers to recruitment and participation in physical rehabilitation research: a mixed methods study among people with multiple sclerosis. Masters thesis, Memorial University of Newfoundland.

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Abstract

Background: Quality medical treatment requires research that applies to clinical practice. Unfortunately, research participants do not represent the population seeking treatment, with Multiple Sclerosis (MS) rehabilitation research excluding those who have had a recent relapse and those with physical disability; two groups who often seek rehabilitation. There is likely a subset of people with MS who are being excluded from rehabilitation research. Purpose: To categorize those who are not willing to participate in MS rehabilitation research, and to identify facilitators and barriers to participation. Methods: We analyzed registry data collected during an MS clinic visit and a physical performance assessment. Participants had the option of consenting to one, both, or neither of these visits. Those who did not agree to the physical assessment were termed ‘non-participators’, and regression determined predictors of this decision. Interviews explored barriers to participation described by ‘non-participators’, and a patient engagement session with ‘participators’ considered their views on reported barriers. Results: There were 109 participators and 27 non-participators. Non-participators scored lower in cognition, and were more likely to live in an urban area. Those without cognitive impairment were 3.45 times more likely to participate in rehabilitation research. Interviews (n=8) revealed four themes: (1) fear and uncertainty regarding testing, (2) negative perceptions of research, (3) frustrations with healthcare, and (4) physical impairment as a barrier to participation. Patient engagement event (n=7) revealed three themes: (1) frustrations with healthcare, (2) perceiving participation as beneficial, and (3) interest in holistic treatment. Conclusion: About 19% of the sample were non-participators. Cognitive impairment predicted rehabilitation research non-participation. Fear and uncertainty, physical barriers and negative perceptions of research and healthcare influenced decisions among non-participators, while participators in physical rehabilitation research prioritized the overall benefits of research for themselves and to the community. For rehabilitation research to be applicable to the patients as intended, researchers must identify and overcome barriers and engage patients in the research process.

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