Perceptions and experiences of first mobility aid provision for young children with cerebral palsy in the United States: a mixed-methods study

Abstract

Purpose

The purpose of this study was to establish and understand the provision process and impacts of first mobility aids for children with cerebral palsy (CP) in the United States – specifically orthoses, walkers and gait-trainers.

Methods

We performed a mixed-methods study including surveys and semi-structured interviews of caregivers of young children with CP (n = 10) and clinicians who work with young children with CP (n = 29). We used content analysis for the surveys and inductive coding for the interviews.

Results

Four themes emerged: (1) first mobility aids have mixed impacts and use patterns, (2) there is varied caregiver education and understanding about mobility aids, (3) clinician knowledge, consistency and connection impact care and (4) numerous access barriers exist for families, and there are still opportunities for improvement across all domains.

Conclusions

This research provides insights into the lived experiences of clinicians and caregivers of young children with CP regarding the prescription, provision, use and impact of first mobility aids, specifically ankle foot orthoses and walkers/gait trainers. This study not only provides researchers and clinicians with an understanding of the current status of the prescription and provision process in the United States, but also offers suggestions for improvements of the process and mobility aids themselves. These results have implications for future research, mobility aid, design and the provision process of first mobility aids.

Implications for rehabilitation

• More detailed education and training during the prescription and early use process of first mobility aids has been highlighted as an unmet need by many families.

• The current timeline for participants receiving first mobility aids after prescription such as ankle-foot orthoses and walkers ranges from 2 to 9 months, which may delay access to on-time mobility for young children.

• Clinicians and caregivers highlight benefits of ankle-foot orthoses such as improved gait and standing alignment but also point out these aids can be uncomfortable and inhibit functional floor mobility. Clinicians highlight benefits of walkers such as supporting upright mobility and independence, but also point out challenges with physical barriers in the community and contributions to poor postural habits. Open discussion of these pros and cons with caregivers may be an important part of the provision process.

• Understanding the impact of different types and levels of clinician education and training regarding first mobility aids on confidence and decision-making during provision processes is valuable to improve practice and device design.

Keywords:

• Cerebral palsy
• ankle foot orthotic
• mobility aid
• walker
• gait trainer
• early

Acknowledgements

The authors thank Kristie Bjornson for their guidance for survey and interview guide development.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

This research was supported by the National Science Foundation under Grant CBET 1452646 and Grant GRF DGE-1762114; Center for Research and Education on Accessible Technology and Experiences (CREATE), University of Washington.

Notes on contributors

Nicole L. Zaino

Nicole L. Zaino, PhD is a recent doctoral student graduate of the Department of Mechanical Engineering at the University of Washington. She received her BS in Mechanical Engineering with a minor in Biomedical Engineering from Clarkson University. She is a recipient of the NSF Graduate Research Fellowship. Nicole’s research interests are at the intersection of rehabilitation engineering, disability studies, and biomechanics to understand the impact of and improve mobility aids and other technologies to support mobility from a qualitative and quantitative lens.

Zahra McKee

Zahra McKee is a doctoral student in Biomechanics and Movement Science at the University of Delaware. She received her B.S. in Mechanical Engineering from the University of Washington. Her research interests center around clinically meaningful, user-focused mobility device design.

Charlotte D. Caskey

Charlotte D. Caskey, MS is a PhD candidate in the Department of Mechanical Engineering at the University of Washington. Charlotte’s interests bridge the fields of neuroscience, rehabilitation, and engineering to better quantify responses to novel interventions and promote improved function and increased mobility for children with movement disabilities. Charlotte received her BS in Biomedical Engineering with a concentration in Biomechanics and a minor in Ethics from North Carolina State University in 2019 before completing her MS in Mechanical Engineering from the University of Washington in 2022. She is a recipient of the NSF Graduate Research Fellowship.

Katherine M. Steele

Katherine M. Steele, PhD is the Albert S. Kobayashi Endowed Professor in Mechanical Engineering at the University of Washington. Her research merges biomechanics and design to examine and support human mobility, in all its forms. At UW, she is the Director of the AMP Lab, a shared motion analysis laboratory between engineering and rehabilitation medicine, Associate Director of CREATE (Center for Research & Education on Accessible Technology & Experiences), and co-founder of AccessEngineering, a program to support people with disabilities to pursue careers in engineering and train all engineers in principles of inclusive design. For her work, she has been awarded a Career Development Award in Rehabilitation Engineering from the National Institutes of Health, the National Science Foundation CAREER Early Faculty Development Award, and the American Society of Biomechanics Young Scientist Award.

Heather A. Feldner

Heather A. Feldner, PT, PhD, PCS Emeritus, is an Assistant Professor in the Department of Rehabilitation Medicine, Adjunct Assistant Professor in the Department of Mechanical Engineering, core faculty in the Disability Studies Program, and an Associate Director of the Center for Research and Education on Accessible Technology and Experiences (CREATE) at the University of Washington. Dr. Feldner’s research is centered at the intersection of mobility, disability, and technology in two primary areas, including perceptions of disability and identity and how these emerge and evolve through technology use, and in the design and implementation of pediatric mobility technology, considering how attitudes and the built environment affect equity and participation. She also focuses on how disability can be further integrated into intersectional Justice, Equity, Diversity, and Inclusion initiatives, particularly in health professions education. Her current work incorporates multidisciplinary, mixed methods, and participatory approaches drawing from her background as a pediatric physical therapist, doctoral work in disability studies, and postdoctoral research in mechanical engineering.