Development of Child and Family-Centered Engagement Guidelines for Clinical Administration of the Challenge to Measure Advanced Gross Motor Skills: A Qualitative Study

ABSTRACT

Aims: This article describes a qualitative study aimed at producing child-centered guidelines for the administration of a measure of children's advanced gross motor skills, the Challenge. The purpose of the guidelines is to promote collaborative interpretation and application of results. Methods: The study was conducted in three Canadian cities and included 31 children with cerebral palsy (GMFCS Level I or II) ages 8 to 18 and one parent/caregiver per child (N = 62 participants). Following Challenge administration, each child and one of their caregivers took part in separate qualitative interviews. Analyses were oriented to exploring understandings of the purposes of testing, impressions of the child's performance, and perceptions of how results might inform activity choices and interventions. Results: Three themes were generated: investments in doing well; I know my child/myself; and caregivers' interpretations of child's performance. Themes were then integrated with principles of child and family-centered care to develop The Challenge Engagement Guidelines directed at reducing test anxiety and enhancing shared decision making. Conclusions: The Guidelines are the first of their kind to integrate child and family-centered principles into the administration protocol of a motor measure. Although developed for the Challenge, the principles have applicability to other rehabilitation measures.

KEYWORDS:

• Cerebral palsy
• child-centered Care
• family-centered Care
• measurement
• qualitative studies

Acknowledgments

The authors would like to thank the physiotherapists who conducted the interviews and assessments (Puja Ahluwalia, Mary Huggins, Barbara Kelly and Carol Kehler); and the site co- investigators (Darcy Fehlings, Peter Rosenbaum, Ronit Mestermen, Ellen Wood, John Andersen, Cheryl Glazebrook, Marie Kim and Lori Roxborough). We also extend our appreciation to the children and caregivers who participated in the study and gave so generously of their time and insights.

Declaration of Interest

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

Funding

Canadian Institutes of Health Research (MOP 119367) funded this work.

About the Authors

Barbara E. Gibson, PhD, PT, is Senior Scientist, Bloorview Research Institute, Toronto, Canada and Associate Professor, Department of Physical Therapy, University of Toronto, Canada. She holds the Bloorview Childrens Hospital Foundation Chair in Childhood Disability Studies.

Bhavnita Mistry, MA, is a Research Coordinator at the Bloorview Research Institute, Holland Bloorview Kids Rehabilitation Hospital.

F. Virginia Wright, PhD, PT is Senior Scientist, Bloorview Research Institute, Toronto, Canada and Professor (status), Department of Physical Therapy, University of Toronto. She holds the Bloorview Childrens Hospital Foundation Chair in Pediatric Rehabilitation.