430 - How to Bridge Gaps in Research Knowledge: What, How, and When Parents Want to Learn and Impact on Future Research Engagement

Publication Number: 430.5506

Kathleen Barber, Levine Children's Hospital, Charlotte, NC, United States; Christine B. Turley, Atrium Health Wake Forest School of Medicine, Charlotte, NC, United States; Hillary Herr, Levine Children's Hospital, Charlotte, NC, United States; Morgan Walls, Levine Children's Hospital, Charlotte, NC, United States; Jack Weaver, Levine Children's Hospital, Charlotte, NC, United States; Gang Liu, Levine Children's Hospital, Charlotte, NC, United States; Tiffany Linville, Levine Children's Hospital, Charlotte, NC, United States; Nathan Fleishman, Atrium Health Levine Childrens Hospital, Charlotte, NC, United States; Dennis Schellhase, Levine Children's Hospital, Charlotte, NC, United States; Michael Duncan, Atrium Health Levine Children's Hospital, Charlotte, NC, United States; Dustin M.. Long, Wake Forest School of Medicine of Wake Forest Baptist Medical Center, Winston-Salem, NC, United States

Background: Improved pediatric medical care is dependent on clinical research. Though parents recognize the importance of clinical research to advance pediatric care, only 25% of adults would enroll their child in a study. There is a need to understand parent perceptions of research and preferences regarding increasing research knowledge to promote participation.

Objective: Evaluate parent/caregiver (P/CG) perceptions of learning about research and the relationship of attitude and trust to positive planned action related to research.

Design/Methods: An 11-item survey was developed based on prior validated surveys. A 5-point Likert scale was used for questions on attitude towards research and trust in researchers. Questions regarding preferences about learning about research and potential future intentions were included. Surveys were offered in English and Spanish at 2 general pediatric and 3 specialty pediatric clinics and were anonymous. Chi-square tests were used to compare the distribution of each variable by agreement level for attitude and trust.

Results: 1372 total surveys were returned with 947 complete. Responses were split between settings (48% general, 52% specialty sites). Most P/CG were 20-39 years old (54%), white (41%), and female (82%). 11% had prior research experience and 77% of surveys were completed in English (Table 1). The top ranked preference for learning overall (n=402) and in each of the positive and negative groups was learning via websites provided by their child’s doctor (Figure 1). A free seminar/class about their child’s health was the 2nd most chosen overall (n=318) and in each group. Of those with negative attitudes, 64% indicated an interest in learning as did 76% of those with negative trust. 181 P/CG (19%) marked no interest in learning about research.
Evaluating future planned research engagement (Figure 2), “Consider enrolling my child in a study if offered” was chosen the most overall, n=443, and in the positive attitude and both trust groups. “Choose not to enroll, trust the results” was the 2nd most common choice, n=295, and was the most chosen option for those with negative trust. “Choose not to enroll, not trust results” was selected by 5% of P/CG.

Conclusion(s): Parents/caregivers are interested in learning about research, regardless of their existing attitudes or levels of trust in research. Given that individuals largely selected they would consider enrolling their child and trusting research more following education, strategies to bridge knowledge gaps will be important in reducing disparities and improving trust in research-driven improvements to treatment and care.

Table 1. Demographic Characteristics of Survey Respondents.


Figure 1. Respondent Attitude and Trust by Learning Preference.


Figure 2. Attitude and Trust by Future Planned Research Engagement.