Exploring and expanding stakeholders’ perspectives on the management of Cerebral Palsy, using the International Classification of Functioning, Disability and Health (ICF) and Knowledge Translation framework

Abstract

Introduction: Cerebral Palsy (CP) is the most common cause of disability in children. Healthcare providers aim to facilitate optimal function and participation by working with children and their families. The success of this endeavor depends on shared understanding, collaboration, and contextual factors that affect resource availability. The aim of this thesis was to understand parents’ perspectives in Indian and North American cultures towards management of CP using an ICF lens, to evaluate the extent to which this lens is evident in literature conducted in an Indian context and to evaluate a Knowledge Translation (KT) resource to inform parents and healthcare professionals (HCP). Methods: In the five thesis papers: study 1 explored parents’ perspectives towards the management of their children with CP (qualitative design); study 2 described the contextual factors shaping parents’ perspective in India (reflective design); study 3 and 4, described the research trends in the management of CP in India (scoping review); and study 5 describes the development and evaluation of a KT resource created to inform parents about incorporating the ICFconcepts into management of CP. Results: The qualitative study identified that Indian parents focus more on Body Structure and Function (BSF) challenges and have more resource limitations, as compared to the Canadian context. The scoping review identified that research also focuses on BSF, with less research addressing activity and participation, or its environmental determinants. KT resources showing the application of the ICF concepts into CP management received widespread uptake and were perceived as helpful by parents and HCP. Discussion and Conclusion: ICF was useful for understanding and informing parents and HCP about management of CP. Despite the importance of environmental considerations and contextual factors, these were insufficiently addressed in the literature and in stakeholder perspectives. To optimize CP management across contexts, further research and KT is needed.