“I’d go slow and hope I don’t fall” Exploring lived experiences of children with cerebral palsy walking in challenging environments

Abstract

Children with cerebral palsy (CwCP) experience regular falls [1] but their lived experiences of how falls occur in the real-world are unknown. Understanding real-world causes of falls by listening to perspectives of children and parents is vital, since typical walking analyses are carried out over level-ground and therefore overlooks everyday challenges to balance [2]. Walk-along interviews can generate rich insights into children’s everyday life by discussing experiences while walking [3]. This abstract presents findings from ‘The Walk-Along Project’, a novel qualitative investigation using walk-along interviews to explore lived experiences of CwCP. The Walk-Along Project aimed to determine the challenging walking environments (e.g. uneven surfaces) that increase fall-risk. What types of challenging environments affect fall-risk in CwCP, based on their lived experiences? Twelve CwCP (GMFCS I to III, 6 diplegia, 6 hemiplegia, 12±3 years old) and their parents participated in an outdoor walk-along interview lasting approximately 25 minutes. During each walk-along interview participants discussed previous fall experiences and everyday ‘challenging’ environments (likely to cause a fall) that they commonly encounter. Chest-mounted cameras (Kaiser Baas X450) and clip on microphones (RODE GO II) captured walking environments and conversations. Data from microphones were matched to video footage, manually transcribed and analysed in NVivo using interpretive description[4]. Environments that could or have previously caused a fall were identified by CwCP and photographed during walk-along interviews (Fig. 1). Any uneven surface that could cause a trip or balance disturbance was suggested as challenging, such as tactile paving: “I’d probably trip over it because it is bumpy” (child, aged 13) Unseen grass potholes were reported to cause most falls based on past experiences. Falls were also more likely when combined with sensory distractions (e.g. seeing/hearing nearby people/friends): “So like if I am walking in this direction and am looking at [people playing nearby] football I could go like that…[demonstrates trailing foot tripping on a raised grid]” (child, aged 16) Download : Download high-res image (167KB)Download : Download full-size image Children described things they do to reduce fall-risk, including being careful, avoiding places or walking slower: “I would just go slow on a grass surface and hope that I don’t fall” (Child, aged 8) Younger children evidenced receiving more parental intervention when walking in challenging environments (e.g. “watch your step”). In comparison, older children reported having better awareness of what could cause a fall compared to when they were younger. The Walk-Along Project provides novel insight beyond what is currently known about the types of challenging environments that increase fall-risk in CwCP. Both environmental (uneven surfaces) and sensory (everyday distractions) challenges contribute heavily to daily fall occurrence, which is not considered in existing assessments of CwCP [2]. Future work should consider these interacting factors when trying to determine CwCP at high fall-risk and in the design of fall prevention programmes.