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

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 F...

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Published in:OTJR: Occupational Therapy Journal of Research Vol. 46; no. 2; pp. 256 - 265
Main Authors: Shierk, Angela, Clegg, Nancy, Fulton, Daralyn, Miles, Lindsay, Hunt, Vanessa, Delgado, Mauricio R., Prvu Bettger, Janet, Roberts, Heather
Format: research tables/charts Journal Article
Published: Sage Publications Inc. Apr2026
Online Access:View this record in EBSCOhost
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      dt: Apr2026
      vid: 46
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      pub: Sage Publications Inc.
      place: Thousand Oaks, California
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        atl: Occupation-Based Collaborator Engagement in Research: Developing a Cerebral Palsy Task Force.
      aug:
        au:
          Shierk, Angela
          Clegg, Nancy
          Fulton, Daralyn
          Miles, Lindsay
          Hunt, Vanessa
          Delgado, Mauricio R.
          Prvu Bettger, Janet
          Roberts, Heather
        affil: Scottish Rite for Children, Dallas, TX, USA
      sug:
        subj:
          Cerebral Palsy Therapy
          Research, Medical
          Research Subject Recruitment
          Patient Participation
          Caregivers Psychosocial Factors
          Research Personnel Psychosocial Factors
          Interpersonal Relations
          Collaboration
          Patient Attitudes
          Caregiver Attitudes
          Attitude of Health Personnel
          Patient Satisfaction
          Personal Satisfaction
          Professional Role
          Job Satisfaction
          Life Experiences
          Human
          Funding Source
          Cross Sectional Studies
          Social Participation
          Leisure Activities
          Play and Playthings
          Trust
          Quality Improvement
          Thematic Analysis
          Communication
          Prospective Studies
          Descriptive Statistics
          Male
          Female
          Tertiary Health Care In Infancy and Childhood
          Summated Rating Scaling
          Adolescence
          Adult
          Middle Age
          Aged
          Aged, 80 and Over
          Child
          Adolescent: 13-18 years
          Adult: 19-44 years
          Middle Aged: 45-64 years
          Aged: 65+ years
          Aged, 80 & over
          Child: 6-12 years
          Male
          Female
      ab: 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.
      pubtype: Academic Journal
      doctype:
        research
        tables/charts
        Journal Article
      ougenre: Article
    language: English
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