POWERED WHEELCHAIR STANDING DEVICES – IMPACT ON PARTICIPATION FOR BOYS WITH DUCHENNE MUSCULAR DYSTROPHY

Abstract

Powered wheelchair standing devices (PWSDs), providing both mobility and supported standing, have potential to improve participation and independence for boys with Duchenne muscular dystrophy (DMD) and may be considered an alternative to a seated power wheelchair. In this clinician-led descriptive study, I explored everyday life participation of 9 boys with DMD aged 9-17 years provided with a PWSD. Regular occupational therapy clinical care served as the backdrop for data collection and methods over a 24-month period. I used the Canadian Occupational Performance Measure (COPM) as an intervention. Key collaborative approaches promoted daily life use of supported standing in PWSDs: regular refining and re-defining of COPM goals; promoting and establishing standing in routines and activities; consultation and advocacy at home and school. After 24 months of PWSD use, I gathered event-contingent data over 7 days with a smartphone app to examine frequency of standing in PWSDs and identify the activities in which the boys engaged. The PWSD is an example of an intervention for boys with DMD who are motivated by physical and social engagement and independence for self-care. Enablers included positive attitudinal/social environments with sustained supports from caregivers and therapists. Barriers included pain during supported standing and lack of physical environment accessibility. Supply of PWSDs in the late ambulant period of DMD was optimal. Successful and sustained use of the supported standing feature requires OT interventions, in particular, time and resources for collaboration with parents and schools. Findings will inform anticipatory planning, prescription, timing of supply, and the complexities of implementation and evaluation of this assistive technology device. Implications for funding bodies and for future research are outlined.