Occupation-Based Collaborator Engagement in Research: Developing a Cerebral Palsy Task Force

Abstract

Engaging community collaborators in research is crucial for enhancing health care outcomes, especially for cerebral palsy (CP). However, effective multi-collaborator involvement poses challenges. This study used an occupation-based approach to engage community collaborators in developing a CP Task Force to initiate patient-centered comparative clinical effectiveness research and evaluated member perspectives on roles and experiences. A repeated cross-sectional design was employed, with 18 CP Task Force members completing 39 surveys. Engagement activities focused on social participation, leisure, play, education, and work. Surveys assessed team culture, trust, and role satisfaction. Descriptive statistics analyzed survey data, while thematic analysis summarized qualitative responses. Participants reported high satisfaction and engagement. Key themes included inclusivity, effective communication, accessibility, and expanded engagement. Occupation-based engagement can enhance collaboration, build rapport, and create a shared sense of purpose among multi-collaborators when establishing a CP Task Force to support patient-centered comparative clinical effectiveness research.

Plain Language Summary

Involving Families and Caregivers in Research to Improve Care for Children with Cerebral Palsy

Research that involves families, caregivers, and others with experience in caring for children with cerebral palsy (CP) is essential for improving the research that leads to valuable treatments and outcomes. However, it can be difficult to effectively include these voices in the research process. This study aimed to find a better way to involve the people most affected by CP—children, families, caregivers, and professionals—in research that will help improve care and treatment. The study created a task force with collaborators who provided various perspectives, including those who care for children with CP. The task force focused on everyday activities that are meaningful and essential to people’s lives, such as play, school, and work, an approach grounded in occupational therapy, known as an occupation-based approach. The group met regularly to work together to start a group that supports research that considers the unique needs and experiences of children with CP. The study showed that task force participants were very satisfied with their involvement, feeling that their contributions were valued. They also highlighted the importance of inclusivity, good communication, and expanding access to ensure everyone can participate. The results suggest that using an occupation-based approach to engage families and caregivers to create a task force can help make multi-collaborator engagement in research more relevant, ensuring that collaborators feel comfortable and valued as members of the research team. This approach can be an important tool for occupational therapists and health care researchers to facilitate better involvement of all collaborators in clinical research.