"It is something that gives us hope": Lived experience among parents to children with cerebral palsy who are non-ambulant of the phenomenon physical activity, with or without the use of a novel dynamic standing device.
Katarina Lauruschkus, Robert Holmberg, Åsa B Tornberg
PMID 37168233WHAT IT FOUND
Parents described the Innowalk as their only option for daily exercise, bringing hope by allowing their non-ambulant children to be independent.
However, using the device relied heavily on finding supportive staff and accessible environments to manage the burden.
Key findings
01Parents viewed the dynamic standing device as the only way their child could exercise regularly, which provided hope and a sense of independence for the child.
02Participation in physical activity was entirely dependent on a network of support, including specific personal assistants, accessible environments, and tailored equipment.
03Parents experienced significant burden and guilt due to the time and energy required to coordinate care and physical activity, often feeling they were not doing enough.
STILL TO COME
How it was doneWhat they foundWhat it means for PTsWhat it means for OTsWhat it means for SLPs
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What it does not show
The study included only 11 parents from a previous intervention study, so the findings may not represent all families. Interviews were conducted remotely via Zoom due to pandemic restrictions, which may have limited the depth of observation. The children themselves were not interviewed, so their direct experience is inferred from parental reports.
Declared interests
The authors declared no conflicts of interest. The study was funded by the Swedish Research Council.
The easy way to misread this
Do not interpret the parents' hope and the device's ability to enable exercise as evidence that the Innowalk improves clinical outcomes like walking or strength. This study reports lived experience and perceived benefits, not measured health effects.