Families from the PIUO study were extended an invitation to participate in this qualitative follow-up study, to understand the experience and identify the motivations for parents participating in research studies that directly or indirectly affects their child. Though pain is a common thread between them, the overall connection is that parents are deeply entrenched in the care of their medically complex children, which directly informs their motivations, and barriers, in research participation. When clinicians and researchers can better understand the needs and motivations of the families they seek to serve and engage, they create opportunity for gathering rich and meaningful data.