User-Centered Approach to the Development of a Parent Toolkit to Improve Willingness to Participate in Pediatric Clinical Research

Research

Purpose: The purpose of this project is to develop a web-based parent toolkit (in English and Spanish) for parents of children which will provide information about pediatric clinical research and provide opportunities for parents to practice and build communication, information-gathering, and shared decision-making skills

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OVERVIEW

Advancements in new medical and behavioral treatments for children and adolescents are made possible by conducting pediatric clinical trials.

However, some trials experience challenges with the recruitment of families, limiting the number of clinical trials conducted with children and adolescents. Providing parents (and youth) with high-quality information about clinical research is a way to overcome potential recruitment barriers and positively impact clinical trial accrual.

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A web-based parent toolkit, available in both English and Spanish, will be designed using user/human-centered approach with input from advisory panels of parents and community members and expert consultants. The toolkit will include brief modules with interactive, multimedia content and skill-building activities. A feasibility study will be conducted with parents/caregivers of youth aged 7-17 years of age from diverse backgrounds to determine the impact of the toolkit on outcomes related to parent knowledge, attitudes, self-efficacy, trust, fear and willingness to participate in pediatric clinical trials.