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Context: Children with medical complexity have substantial medical needs and their caregivers must make many challenging decisions about their care. Caregivers often become more involved in decisions over time, but it is unclear what skills they…
BACKGROUND: Patient and family engagement is thought to improve the quality and relevance of child health research. We developed and evaluated the usability of Patient Engagement 101, an e-learning module designed to strengthen the patient-oriented…
The research agenda in pediatric hospital medicine has seldom considered the perspectives of young people, parents and caregivers, and health care professionals. Their perspectives may be useful in identifying questions on topics for research.To…
Engaging patients and family members as partners in research studies has become a widespread practice in healthcare. However, relatively little has been documented about what happens after the research study ends. For example, is patient and family…