435 - Qualitative Insights into Engagement of Acutely Ill Children in Pediatric Research: The ADaPT to Engage Study

Publication Number: 435.6184

Erin Paquette, Ann & Robert H Lurie Children's Hospital of Chicago/Northwestern University Feinberg School of Medicine/Northwestern University Pritzker School of Law (by courtesy), CHICAGO, IL, United States; Leonardo Barrera, Ann & Robert H. Lurie Children's Hospital of Chicago, Chicago, IL, United States; Leopoldo Castillo, Ann & Robert H. Lurie Children's Hospital of Chicago, Blue Island, IL, United States; Abigail Guillaume, University of Illinois College of Medicine, Lincolnwood, IL, United States; Emily Golbeck, Ann & Robert H. Lurie Children's Hospital of Chicago, Chicago, IL, United States; Bethany Pollock, Ann & Robert H. Lurie Children's Hospital of Chicago, Temperance, MI, United States; Seema K. Shah, Ann & Robert H. Lurie Children's Hospital of Chicago, Chicago, IL, United States; Joel Frader, Northwestern University The Feinberg School of Medicine, La Jolla, CA, CA, United States; Matthew M. Davis, Nemours Children's Hospital, Wilmington, DE, United States; Kelly Michelson, Ann & Robert H. Lurie Children's Hospital of Chicago, Northwestern University Feinberg School of Medicine, Chicago, IL, United States

Background: Children at risk for health disparities (CRHD) (non-White race, Hispanic, non-English speaking, rural, low socioeconomic status by NIMHD disparities framework) may be underrepresented in emergency and critical care (ECC) research, where time pressures constrain decision-making and limit ability to build rapport and trust prior to study enrollment.

Objective: To understand motivators/barriers/facilitators to participating in ECC research.

Design/Methods: This qualitative study engaged parents of ECC patients who were approached to participate in research and agreed to or declined participation. Qualitative researchers conducted semi-structured interviews in English and Spanish until reaching thematic saturation. Two reviewers generated initial codes based on interview guide domains and additional codes using constant comparative methods, with discrepancies resolved by consensus. Themes were identified from final codes.

Results: The sample included 32 parents of ECC patients (19 CRHD and 13 non-CRHD). Themes included general positive views of research (Table 1), prior experience with research (Table 2), and motivators, barriers, and suggestions to facilitate research (Table 3). Relationships with institutions led to beliefs that researchers were trustworthy. Respondents indicated comfort with receiving study information; some wanted more discussion, visual aids and time for questions. Positive experiences related to staff interactions and institutional trust. Negative experiences related to historical research raising ethical concerns, awareness about incidents of falsified data, failed recall of prior approaches, and overly formal staff interactions. Motivations to participate included hope to improve healthcare, disease education and understanding, receipt of benefit for their child/others, and study incentives. Concerns related to approach timing, burden of study activities, and in person visits. Suggestions to facilitate participation included improving understanding of research purpose, minimizing visit burden with fewer/shorter/virtual visits, and optimizing timing and style of the approach.

Conclusion(s): This study of diverse participants suggests modifiable factors impacting research engagement: approach timing/style, ensuring understanding of purpose, addressing visit burden and building institutional trustworthiness. For some, the historical context of bias in research remains relevant. Insights can inform targeted interventions to ensure equitable representation in pediatric ECC research and guide researchers and policymakers in conducting inclusive, more generalizable and actionable research.

Table 1. General Positive Views of Research and Research Information Delivery
* Respondent identity is qualified by whether the respondent agreed (Yes) or declined (No) research participation for their child and whether they were characterized as CRHD (child at risk for health disparities) or non-CRHD (not at risk for health disparities).

Table 2. Previous Knowledge of or Experience with Research (‡)
* Respondent identity is qualified by whether the respondent agreed (Yes) or declined (No) research participation for their child and whether they were characterized as CRHD (child at risk for health disparities) or non-CRHD (not at risk for health disparities).
‡ All combinations: 1. No, CRHD; 2. No, non-CRHD; 3. Yes, CRHD; 4. Yes, non-CRHD were included in the sample, as seen, for example, in Table 2.


Table 3. Motivators, Concerns, and Suggestions to Facilitate Research Participation
* Respondent identity is qualified by whether the respondent agreed (Yes) or declined (No) research participation for their child and whether they were characterized as CRHD (child at risk for health disparities) or non-CRHD (not at risk for health disparities).