“If I Knew Then What I Know Now”: Parents’ Reflections on Raising a Child with Cerebral Palsy

ABSTRACT

In this study we investigated experiences of parents of children with cerebral palsy (CP) to identify areas in which health care providers and educators could improve practice. A second objective was to create educational material for parents of young children newly diagnosed with CP. A purposive sample of nine parents, who previously participated in the Adolescent Study of Quality of Life, Mobility, and Exercise, was recruited through phone. During an interview, parents reflected on the experience of raising a child with CP from birth to young adulthood. These interviews were audiotaped, transcribed, and coded using the International Classification of Functioning, Disability and Health-informed model and analyzed to identify major themes. Parents elaborated upon what was helpful and what could be changed to improve their children's and families’ experiences through supports, advocacy, and education at different levels. The results informed the development of tips for parents and children with CP to enhance their families’ experiences and interactions with health care providers, educators, and others.

KEYWORDS. :

• Advice
• advocacy
• cerebral palsy
• parents
• social experiences

ACKNOWLEDGMENTS

This project was funded by the Jack and Ina Pollock Charitable Foundation. Thanks to Barb Galuppi, project coordinator for CanChild, for recruiting parent participants. We especially thank all of the participating parents for sharing their thoughts so openly. The four lead authors contributed equally to this project in the analysis phase to fulfil the requirements of the MPT program at The University of Western Ontario. Final authorship order reflects the relative weighting of the contributions to revising the manuscript in the review process.

Declaration of Interest: The authors report no conflicts of interest. The authors alone are responsible for the content and writing of the paper.