Moving from parent "consultant" to parent "collaborator": one pediatric research team's experience.

Abstract

We share our experiences as academic physical therapists and parents of young people with cerebral palsy working together as a research team, describe and critically review how our working relationship has evolved and propose further enhancements to realize our shared vision. This manuscript is informed by a call for "family-centered research," transcripts of face-to-face meetings held over a period of 1^1/2 days, the INVOLVE document and our experiences over almost a decade, as well as other related literature. Authentic collaborative research partnerships between academic researchers and parents embodying trust, mutual respect and shared social responsibility take time and effort to develop and sustain. Rehabilitation research is more meaningful and may be more impactful when strong collaborative partnerships between researchers and health service users are in place. Implications for Rehabilitation Involving service users in rehabilitation research is important, but not without challenges. Attaining authentic collaboration requires face-to-face meetings, time, effort, and ongoing open communication. Research processes are superior and outcomes may be improved with service user involvement. Impact of research on rehabilitation practice is anticipated to be more meaningful with service user involvement.