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

Abstract

Background:Cerebral palsy (CP) affects roughly 3 per 1000 births in the United States and is the most common pediatric developmental motor disability. Ankle foot orthoses (AFOs) are commonly prescribed to provide support and improve function for individuals with CP.Objectives:The study objective was to evaluate the lived experiences of individuals with CP and their caregivers regarding AFO access, use, and priorities. We examined experiences around the perceived purpose of AFOs, provision process, current barriers to use, and ideas for future AFO design.Study design:Secondary qualitative data analysis.Methods:Secondary data analysis was performed on semistructured focus groups that included 68 individuals with CP and 74 caregivers. Of the focus group participants, 66 mentioned AFOs (16 individuals with CP and 50 caregivers). Deidentified transcripts were analyzed using inductive coding, and the codes were consolidated into themes.Results:Four themes emerged: 1) AFO provision is a confusing and lengthy process, 2) participants want more information during AFO provision, 3) AFOs are uncomfortable and difficult to use, and 4) AFOs can benefit mobility and independence. Caregivers and individuals with CP recommended ideas such as 3D printing orthoses and education for caregivers on design choices to improve AFO design and provision.Conclusions:Individuals with CP and their caregivers found the AFO provision process frustrating but highlight that AFOs support mobility and participation. Further opportunities exist to support function and participation of people with CP by streamlining AFO provision processes, creating educational materials, and improving AFO design for comfort and ease of use.

Perspectives on ankle-foot technology for improving gait performance of children with Cerebral Palsy in daily-life: requirements, needs and wishes

“…The results derived from the surveys provide insights on the stakeholders’ needs and criteria to assist pathological gait in CP, highlighting important required features that may be useful for both (1) the assessment and prescription of current AFOs, and (2) the development of future novel devices. A recent publication [ 21 ] has previously assessed some of our concerns and strengthen the pertinent development of new research in this field. However, Zaino et al [ 21 ] only performed a qualitative analysis, while we provide both quantitative and qualitative analysis and include other clusters that were not considered in [ 21 ] (e.g.…”

“…A recent publication [ 21 ] has previously assessed some of our concerns and strengthen the pertinent development of new research in this field. However, Zaino et al [ 21 ] only performed a qualitative analysis, while we provide both quantitative and qualitative analysis and include other clusters that were not considered in [ 21 ] (e.g. Gait management and AFO prescription and Relevant in-home metrics ).…”

“…avoiding skin pressure, friction or abrasions. This has also been a primary concern of previous studies about the efficacy of AFOs for CP [ 13 , 21 ], and other studies focused on assistive technology for patients with spinal cord injury or stroke [ 30 ]. The second most valuable design feature highlighted by both stakeholder groups was the “ease of putting-on and taking-off” the device.…”

“…However, this general relationship is too broad with respect to the ideal orthotic management that should be prescribed to tailor the specific needs of an individual patient. First, current clinical standards for choosing all possible AFO design features and the impact of these features on patient outcomes in daily-life are unclear [ 13 , 18 – 21 ]. Second, the assessment of the patient’s walking capacity in a laboratory is not always representative of the patient’s walking performance in real life [ 20 , 22 ].…”

“…Second, the assessment of the patient’s walking capacity in a laboratory is not always representative of the patient’s walking performance in real life [ 20 , 22 ]. Additional information about the patient’s community walking activities would be beneficial to better understand their gait problems and improve the design and prescription of the different AFO solutions [ 21 ].…”