Stakeholder perspectives of pediatric powered wheelchair standing devices: a qualitative study

Abstract

AIM To explore and describe the experiences and perspectives of various stakeholders regarding the use of powered wheelchair standing devices (PWSDs).METHOD The purposive sample included: children aged 6 to 18 years who used a PWSD (n=8; diagnoses: cerebral palsy, spinal muscular atrophy, spina bifida, spinal cord injury), parents of children 18 years of age or younger who used a PWSD (n=12), rehabilitation professionals working with children who used a PWSD (n=12), and professionals working at companies manufacturing PWSDs (n=3). Data were gathered via face-to-face interviews conducted either in person or via Zoom â and analyzed using the constant comparative method.RESULTS Three main themes emerged in the data: (1) 'Stand-on-demand' revealed how participants perceived PWSDs as allowing children to stand whenever and wherever they wanted, thereby increasing participation; (2) 'It's more than weight-bearing' uncovered participants' perceptions of psychological and physical benefits from PWSD use; and (3) 'Ecosystems influencing PWSD acquisition and use' revealed child-and non-child-related factors perceived as influencing children's procurement and use of a PWSD.INTERPRETATION Use of a PWSD was perceived as providing a unique opportunity for children to stand whenever and wherever they desired. Findings suggest the possible transdiagnostic application of PWSDs.

Parent perspective on powered wheelchair standing devices

“…He was an appropriate candidate for the device, but was too small for it at the time. Our experiences were similar to those described by Kenyon et al 1 They explored stakeholder perspectives, which truly highlight both the benefits to participation and the realities of obtaining and owning this equipment.…”

“…My hope for my son with cerebral palsy (CP) is that he is included and can participate with his peers in the community, school, or home environment-and that he can have fun doing these things. When choosing equipment or devices to enhance participation, the factors we consider include: (1) Can it be used in multiple settings? (2) Can it operate with minimal assistance?…”

Supported‐standing interventions for children and young adults with non‐ambulant cerebral palsy: A scoping review

“…70 A qualitative study exploring perceptions of standing power wheelchair use identified a similar theme. 115 'It is more than weight bearing' described perceived benefits for bowel, bladder, and respiratory function and BMD. In addition, psychological benefits were also seen as important with changes in how children were perceived when in their power standing devices.…”

“…The ability to stand intermittently and frequently throughout the day may provide differing benefits from a separate stander. 115…”

From autism to zoom®: Spina bifida advocacy, care, education, and research in a changing world1

“…For example, increas-ing autism spectrum disorder rates have been reported among individuals with SB utilizing a 31,220 subject population-based birth cohort [5,6]. Along with new clinical observations, telecommunication platforms such as Zoom ® have evolved as SB-related clinical and research tools [7]; from telemedicine to customized electronic medical records, technologies continue to be adapted for service in SB care [8,9]. To keep pace with the rapid transformations in our changing world, clinicians who serve the SB population must be able to turn to reliable sources of information and continuing medical education.…”