Power mobility : measuring participation in everyday life for children benefiting from power mobility use

Independent mobility is vital for daily life, with emerging evidence suggesting it is an important foundation for overall development and life-long learning. However, children with mobility limitations are at risk for participation restrictions. Many believe that power mobility (PM) use (typically wheelchairs) makes a difference in children’s ability to participate in daily life, but research evidence is limited. Purpose: To advance understanding of how children (under 18 years) use PM to engage in meaningful life situations and to establish feasible research methods with reliable and valid measurement tools to investigate PM’s impact on children’s ability to participate. Methods: A systematic review identified and critically appraised participation tools appropriate for use; a four-round online modified Delphi survey advanced understanding of what participation-related information is important to measure and evaluated suitability of participation tools; and a feasibility study using an interrupted time series design examined process, resources, management and scientific indicators with children using PM. Results: Twenty potential participation tools were identified. Twenty-one elements describing the ‘who, what, where, when and how’ of measuring participation for children using PM achieved consensus from 74 parents, therapists and researchers. Then panelists used these elements to rank 13 participation tools, with six demonstrating suitability. Feasibility of conducting longitudinal research was examined with a sample of 32 children, and their everyday participation was described using three tools. Findings provided reliability and validity evidence, including initial responsiveness of tools for children needing PM. Change in participation was measured over 5 occasions within 4 months for 13/32 children receiving new PM devices. Conclusion: Employing integrative knowledge exchange, participation elements important to measure for children using PM, along with potential participation tools relating to these elements were identified to explore participation outcomes. Feasibility for larger, multi-site studies was established along with preliminary evidence of three participation tools’ measurement properties with children using PM and changes in participation outcomes following receipt of a new PM device. This thesis has provided foundational evidence on how children using PM participate in everyday life, and importantly provided a crucial underpinning for further discussions and investigations relevant to this topic.Medicine, Faculty ofGraduat