‘What if it were like this?’ Perception of mothers of children with cerebral palsy about the ankle‐foot orthosis of their children: A qualitative study

Abstract

Background: The family-centred approach is fundamental in the therapeutic process of children with cerebral palsy (CP), and the increased competence of parents about therapeutic devices, especially orthoses, can facilitate its implementation, thus intensifying the benefits that this device provides. The aim of this study was to understand the perception of mothers of children with CP in relation to their children's anklefoot orthosis.Methods: This is a qualitative study using thematic content analysis technique. Data were collected using semi-structured interviews from 24 mothers of children with Levels IV and V of CP according to the Gross Motor Function Classification System (GMFCS), who were attended at a philanthropic rehabilitation centre.Results: Three categories were identified from analyzing the interviews: benefits of the orthosis, the orthosis in the child's daily life and 'What if it were like this?' Conclusions: According to the mothers' perceptions, the ankle-foot orthosis improved their child's mobility. The orthoses are used in different contexts in the child's daily life, and the mothers pointed out suggestions regarding personalizing the orthosis with different colors and patterns, increasing comfort and facilitating the way in which the device is placed. K E Y W O R D S family, neurological disorder, orthotic devices 1 | INTRODUCTION Children with cerebral palsy (CP) have musculoskeletal impairments, which are often associated with comorbidities such as cognitive disorders, which directly interfere in acquiring essential motor skills to perform daily activities and participating in the environment in which

“That's frustrating”: Perceptions of ankle foot orthosis provision, use, and needs among people with cerebral palsy and caregivers

“…Similar to previous research with mothers of children with CP, our participants felt that although AFOs are useful for mobility and positioning, AFOs could benefit from improved aesthetics and comfort. 16 A key difference between the study by Lana et al and our study is the strong focus in our study on the AFO provision process, possibly suggesting that the ease or difficulty of obtaining AFOs may be a location-specific challenge. Our study focused on AFO users and their caregivers in the United States, whereas Lana et al sampled mothers of AFO users in Brazil.…”

“…15 Caregivers have voiced some similar perspectives. Lana et al reported that mothers of children with CP expressed that AFOs improved their child's mobility but wanted more personalization and increased comfort 16 Ankle foot orthoses are commonly used for other disabilities, such as Charcot-Marie-Tooth disease. Individuals with Charcot-Marie-Tooth voiced concerns about functional mobility, pain/ discomfort, choice of AFOs and associated footwear, custom design, and use in practical situations.…”

Parent experience with ankle-foot orthoses for their young children with cerebral palsy: a qualitative study

“…Similar findings were reported by Zaino et al (35), who studied the experiences of AFO users with cerebral palsy and their caregivers in the United States and reported a knowledge gap among users about AFO provision, such as the rationale for prescribing a specific type of AFO. Their findings also emphasized the importance of educating families about AFOs to address their challenges and concerns, a perspective also supported by other research (38). Clinical teams can assist parents with navigating practical challenges, such as providing advice regarding clothing/footwear brands that have worked for other families or financial resources to support extraordinary expenses.…”

Individualized orthotic alignment and footwear for balance and mobility in children with bilateral spastic cerebral palsy: A randomized trial

“…Similarly, caregivers of children with CP noted that AFOs improved mobility for their children, yet also desired improved comfort and individualization (e.g. colors of device/straps) 29 …”