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BACKGROUND: The study aimed to understand the experience of and identify the motivations for parents participating in health research for their children with medical complexity (CMC). Patient-oriented research strategies are increasingly important in…
Derived from our experience of recruiting children with medical complexity for research studies, the “Motivations Study” will help us understand the complex barriers to research participation for parents of a child with a serious illness. In this…
A new group of medically fragile young adults are graduating from pediatric palliative care programs with limited expectations to live beyond early adulthood, and no comparable adult services to support their complex needs. Accessing this population…