Impact of COVID-19 on perceptions towards participation in CP research: Survey results from potential participants

ABSTRACT

Background and Objective(s) The coronavirus disease (COVID-19) global pandemic has resulted in social distancing measures and stay-at-home orders, affecting the capacity to carry out in-person research related to cerebral palsy (CP). As researchers maneuver re-initiation of in-person research during the current phase of the pandemic with a demographic that is historically difficult to recruit, they need information from stakeholders about the considerations that affect their decision to participate in research. The purpose of this study was to explore the comfort levels surrounding and perceptions towards participation in CP research using survey-based qualitative methods. Study Design: Qualitative Research (Consecutive and Purposive Sampling). Study Participants & Setting: A voluntary sample of 187 (129 GMFCS I-III and 57 GMFCS IV-V) parents of children with CP (n=105) or adults with CP (n=81) completed this qualitative online survey. Materials/Methods: Participants were asked about the impact of the COVID-19 pandemic on feelings towards participation in CP research. Responses were organized into a spectrum of perceptions using keywords. Initial categorization grouped impact responses into 'yes,' 'no,' and 'maybe.' Responses were further categorized using additional qualifying reasons;several responses fell into multiple categories. Results: There was a wide range in attitudes surrounding in-person research participation, with 36% stating that COVID-19 had no impact, 30% stating that it did have an impact, and 41% somewhere in the middle. Individuals who felt that COVID-19 had a strong impact stated being immunocompromised or needing a vaccination as influencing their feelings towards participating. In contrast, those who felt there was little to no impact of COVID-19 indicated a value for CP research, or willingness to participate if certain measures were in place (ie. safety precautions at the study site or potential direct benefits offered). Health concerns, transportation to and location of study site, and mitigation of COVID-19 risk at study site were the most commonly cited factors of respondents regardless of their overall feelings towards participation. One participant stated that they "have more time now, so [they] might be more apt to participate as long as safety protocols are in place and strictly followed," while another indicated that they were "somewhat more anxious about exposing [their] child and [themselves]." Conclusions/Significance: In the evolving era of COVID-19, the results of this survey provide insights into the feelings of potential participants when deliberating and planning for re-initiation of in-person CP research. If researchers are aware of general participant concerns regarding transportation, location, precautionary measures, and underlying medical conditions when planning to re-initiate CP research, they can proactively work to address concerns. The large number of respondents shows a commitment to navigating the new normal of COVID-19 by both scientists and participants.