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

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.

Children with bilateral cerebral palsy use their hip joint to complete a step-up task

“…This is a major concern because reduced mobility can lead to a higher risk of comorbidities such as heart disease and chronic pain in adulthood ( van der Slot et al, 2013 ; Heyn et al, 2019 ; Peterson et al, 2020 ; Schmidt et al, 2020 ; Hammam et al, 2021 ). Most importantly, community members affected by CP prioritize research focused on understanding the nature of impairments to improve overall mobility ( Vargus-Adams and Martin, 2009 , 2011 ; Gross et al, 2018 ), especially in the lower limbs ( Zvolanek et al, 2022 ).…”