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

Area of Science:

• Rehabilitation research
• Physical therapy
• Cerebral palsy

Background:

• Academic physical therapists and parents of individuals with cerebral palsy (CP) collaborated on research.
• This partnership was informed by family-centered research principles and nearly a decade of experience.
• The manuscript reviews the evolution of this collaborative relationship.

Purpose of the Study:

• To describe and critically review the development of a collaborative research partnership between academic physical therapists and parents of young people with cerebral palsy.
• To propose enhancements for authentic collaboration in rehabilitation research.
• To underscore the importance of family-centered research in improving rehabilitation outcomes.

Main Methods:

• Qualitative analysis of experiences from an academic-parent research team.
• Review of face-to-face meeting transcripts (1.5 days).
• Integration of literature on family-centered research and service user involvement (e.g., INVOLVE document).

Main Results:

• Authentic collaborative research partnerships require time, effort, trust, mutual respect, and shared social responsibility.
• Challenges exist in involving service users in rehabilitation research.
• Face-to-face meetings, sustained effort, and open communication are crucial for achieving authentic collaboration.

Conclusions:

• Strong collaborative partnerships between researchers and health service users enhance the meaningfulness and impact of rehabilitation research.
• Involving service users in research processes can lead to superior research and improved outcomes.
• Research involving service users is anticipated to have a more meaningful impact on rehabilitation practice.