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.

Keywords:

• Family-centered research
• consumer involvement in research

Acknowledgements

Hjorngaard acknowledges the experiences and opinions of her daughter Mika as a fundamental source for her knowledge as a research collaborator. Sieck Taylor acknowledges her son William as her primary teacher, not just about ability and disability, but about what makes a meaningful life. All of the authors acknowledge additional members of the On Track Research Team, including parent collaborators: Lisa Diller, Paula Drew, Nancy Ford, Marquitha Gilbert and Kimberly Rayfield, academicians: Sarah Westcott McCoy, Robert Palisano, Lynn Jeffries, Alyssa LaForme Fiss, Jan Willem Gorter and Steven Hanna, and primary project coordinators Barbara Galuppi and Monica Smersh.

Disclosure statement

The authors report no conflicts of interest. The authors alone are responsible for the content and writing of this article.

Funding

The Move and PLAY study was funded through the Canadian Institutes of Health Research (MOP 81107) and the US Department of Education, National Institute for Disability and Rehabilitation Research (H133G060254). The On Track Study is funded through the Canadian Institutes of Health Research (MOP 119276) and the Patient-Centred Outcomes Research Institute (Contract #5321). Hjorngaard and Sieck Taylor received modest honoraria from all of the research grants cited here. All statements in this report, including its findings and conclusions, are solely those of the authors and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute (PCORI), its Board of Governors or Methodology Committee.