Motivators and barriers to research participation for individuals with cerebral palsy and their families

Zvolanek, Kristina M. and Goyal, Vatsala and Hruby, Alexandra and Ingo, Carson and Sukal-Moulton, Theresa and Menezes, Ritesh G. (2022) Motivators and barriers to research participation for individuals with cerebral palsy and their families. PLOS ONE, 17 (1). e0262153. ISSN 1932-6203

[thumbnail of journal.pone.0262153.pdf] Text
journal.pone.0262153.pdf - Published Version

Download (1MB)

Abstract

Objective(s)
Our objective was to investigate the motivators and barriers associated with the individual or family decision to participate in cerebral palsy research. Based on this information, we offer suggestions to increase the likelihood of participation in future CP studies.

Methods
A digital survey was administered to stakeholders affected by cerebral palsy across the US. Our analysis focused on variables related to personal interests, travel, and study-specific elements. Statistical tests investigated the effects of responder type, cerebral palsy type, and Gross Motor Function Classification System level on travel and study-specific element variables. Recommendations were informed by responses reflecting the majority of respondents.

Results
Based on 233 responses, we found that respondents highly valued research participation (on average 88.2/100) and compensation (on average 62.3/100). Motivators included the potential for direct benefit (62.2%) and helping others (53.4%). The primary barriers to participation were schedule limitations (48.9%) and travel logistics (32.6%). Schedule limitations were especially pertinent to caregivers, while individuals with more severe cerebral palsy diagnoses reported the necessity of additional items to comfortably travel.

Conclusions
Overall, we encourage the involvement of stakeholders affected by cerebral palsy in the research process. Researchers should consider offering flexible study times, accommodating locations, and compensation for time and travel expenses. We recommend a minimum compensation of $15/hour and a maximum time commitment of 4 hours/day to respect participants’ time and increase likelihood of research participation. Future studies should track how attitudes toward research change with time and experience.

Item Type: Article
Subjects: Eurolib Press > Medical Science
Depositing User: Managing Editor
Date Deposited: 12 Jan 2023 07:10
Last Modified: 29 Feb 2024 04:10
URI: http://info.submit4journal.com/id/eprint/962

Actions (login required)

View Item
View Item