Stakeholder Perspectives on Engaging With Cerebral Palsy Research Studies After Onset of COVID-19 in the United States.

OBJECTIVE

To investigate the effect of the coronavirus disease 2019 (COVID-19) pandemic on perspectives toward participation in cerebral palsy (CP) research.

DESIGN

An online survey with questions relating to the comfort levels of research participation was filled out by people who had CP or had a child with CP.

SETTING

The online survey was administered through Research Electronic Data Capture platform.

PARTICIPANTS

A total of 233 (n=233) individuals with CP (42.5%; n=99) or with a child with CP (57.1%; n=133) consented and at least partially completed the online survey (n=210 complete; n=23 partially complete). All participants resided in the United States.

INTERVENTIONS

Not applicable.

MAIN OUTCOME MEASURES

Readiness to participate was analyzed in the context of the time point for research participation during COVID-19 and whether or not the study offered direct benefits to participants.

RESULTS

Participants were consistently willing to participate sooner in studies that offered direct benefit than in those that did not. Adults responding for themselves had sooner time points for studies without direct benefit compared with parents answering for a child (P=.030). Gross Motor Function Classification System level, but not age or CP type, affected the time point for studies without direct benefit (P=.017). Personal values influenced selected time point for studies without direct benefit (P=.007), whereas environmental factors affected the time point for studies with direct benefit (P=.002). Local COVID-19 incidence rates were not associated with time points for either research type; however, respondents expected precautions to be taken if they chose to participate.

CONCLUSIONS

As the pandemic evolves, researchers should consider the perspectives of potential participants as well as ethical and safety factors when reinitiating in-person CP research.