Peer-reviewed article

3545 “Sofia Learns about Research”: an interactive storybook to educate children and their families on clinical research with a welcoming and inclusive approach.

Quattrin T, Cadzow R, Marrone A, Smith T, Getman B · 1 Mar 2019

Abstract

OBJECTIVES/SPECIFIC AIMS: Our overall goals are: 1. To engage, inform and educate children and families on clinical research and increase their understanding of the goals and process of participation in research studies/clinical trials; 2. To Increase participation of children, especially those who are disproportionately underrepresented, in clinical research in the Western New York region and beyond. METHODS/STUDY POPULATION: The University at Buffalo Clinical Translational Science Institute conducted meetings in schools, community coalitions while holding focus groups with children with chronic conditions and their families and community health workers to identify the general perceptions of research. These conversations then informed the development of a children’s activity book about research. Completed in 2017, our “Sofia Learns about Research” activity book presents research in a non-threatening way by presenting a child with asthma who walks through the process of learning about research, being recruited and participating in research. The book explains basic concepts about research coupled with fun games and the possibility to color. Over 1,000 copies of the activity book have been disseminated to second to fourth graders via afterschool programs, community events, and medical practice waiting rooms. Recipients of the book are directed to short surveys to provide feedback on the book and their perception of research. The parents are also given the option to sign-up for the Buffalo Research Registry in order to be contacted about research opportunities. RESULTS/ANTICIPATED RESULTS: Response has been very positive, with parents and community participants saying “It’s not just a storybook. The activities keep kids entertained while learning new concepts.” In children informally polled via a brief questionnaire pre and post story reading at an afterschool program, there was an increase in those interested in participating in a research study. In a recent event sponsored by the CTSI Community Engagement Core and other UB organizations, a group of fifty children from diverse background colored with enthusiasm several activity pages and obtained stickers for their “Research Passport”. In a recent teacher focus group we learned that the book content may fit the Science Curriculum and plan on reading sessions in inner-city schools after approval from the district. A pilot reading activity in a Montessori program revealed that second grade children were able to understand and complete the activities in the book. We are obtaining further feedback form teachers and parents in order to design simple protocol to be submitted for IRB approval to obtain more formal feed-back and outcomes in future readings. In parents and focus groups several respondents have indicated its relevance to older populations and English-language learners as well. The book has recently been translated into Spanish and Arabic through a partnership with the International Institute of Buffalo, which “welcomes, connects and empowers the foreign born”. Some of the book’s images have been modified in order to be sensitive to the readers’ culture and we are in the process of collaborating with the International Institute to disseminate it to their clients. We are in the initial phase of planning a mobile application which we anticipate will significantly enhance dissemination. DISCUSSION/SIGNIFICANCE OF IMPACT: This presentation will describe the development process, the underpinning concepts and our plans and current progress towards a more formal community and school dissemination and evaluation. This project was made possible by Team Science in that the expertise of a millennial pre-medical student and an anthropologist with high community involvement was coupled with that of a senior clinical translational researcher. Moreover, much research and attention was devoted to the creation of images that are culturally inclusive. To this end, with the exception of the cover page, we have intentionally created the book in black and white so that the child may use his/her imagination and color the way he/she sees the protagonists and the environment. Great attention was devoted to names of the protagonists with the names of the two main characters being among the most common in the world in numerous countries. Also, the book lends itself to a mobile application which will allow the reader to change colors and shapes of the protagonists to fit his/her cultural background. We are in the early planning stages and will share our progress as part of this presentation. We have strived to disseminate the book with a broad approach in our community. This phase is being followed by a more formal dissemination phase via libraries, schools and community events. This part of the project exemplifies the challenge between wanting to disseminate the book broadly while obtaining formal feedback and outcomes in compliance with regulations protecting the anonymity and/or confidentiality of children and families. Therefore for this second phase of dissemination IRB approval is being sought in order to collect more quantitative and qualitative data on the impact of the book. We have already conducted a focus group with teachers to overcome the challenges around informed consent, especially in the public school system. Our initial findings suggest this resource will improve knowledge and perception of research among children and their families. To our knowledge most of the materials explaining research to children are geared to older children and are often sponsored by pharmaceutical companies for a specific trial. If successful, this book can have a profound impact in reaching out to children outside of the research and medical environments, with the ultimate goal of increasing the child’s and family’s willingness to participate in clinical research and clinical trials.