Motivators and barriers to research participation for individuals with cerebral palsy and their families.
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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.
SUBMITTER: Zvolanek KM
PROVIDER: S-EPMC8791530 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:ObjectiveTo examine the hypothesis that the influence of physical activity capacity on participation is mediated through activity performance.DesignSecondary analysis of a prospective cross-sectional study sample.SettingRegional pediatric specialty care hospital.ParticipantsChildren (N=128; 59% boys; age range, 2-9y) with cerebral palsy with Gross Motor Function Classification System levels I to III; 49% had hemiplegia, and 72% had spasticity.InterventionsNot applicable.Main outcome measuresActivity capacity was measured with the Gross Motor Function Measure-66, performance was measured with the Activities Scale for Kids, and participation was measured with the Assessment of Life Habits. Children's Assessment of Participation and Enjoyment and the Assessment of Preschool Children's Participation assessed diversity participation. Regression equations and Sobel z test were used to examine the mediated effect via performance.ResultsPhysical activity performance mediates 74.9% (β=.83, P<.001) of the effect of activity capacity on total participation levels and 52.8% (β=.47, P=.001) of the effect of capacity on diversity participation.ConclusionsThe relation between what an ambulatory child with cerebral palsy is able to perform in a clinical setting and their participation in life is significantly mediated by what they actually do motorically in day-to-day life. Results suggest that interventions focusing on improving what they actually do every day, regardless of their capacity to perform (what they can do when tested), may positively influence participation.
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