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

Abstract

Purpose

This study explored the experiences of parents of young children with cerebral palsy who used Ankle-Foot Orthoses (AFOs).

Materials and Methods

Parents of children with cerebral palsy (n = 11; age range 2–6 years) who used solid or hinged AFOs participated. Interpretive Description, a qualitative methodological approach focused on the application of findings to clinical practice, was used. Semi-structured interviews were conducted, and themes were developed using thematic analysis.

Results

Four themes described parent experience with their children’s AFOs: 1) “Hear what I am saying”: Collaborative decision-making with families, 2) “Is my child going to be excluded because of AFOs?”: Parent and child adjustment was a journey, 3) AFOs created financial and practical challenges, 4) The perceived benefits of AFO use.

Conclusions

Adjusting to AFOs was a challenging and time-consuming process for parents and children, which may have resulted in lower frequency and duration of use than anticipated by clinicians. Clinicians must be aware of the physical and psychosocial adjustment process as children and families adapt over time and work with families to ensure AFO use is optimized and individualized.

IMPLICATIONS FOR REHABILITATION

• Clinical practice will be enhanced by understanding  parent experience with their children’s receipt and use of Ankle-Foot Orthoses (AFOs).

• Clinicians should work with families to establish and monitor individualized wear-time schedules that align with family routines.

• Information about AFOs, including appearance and alternative clothing requirements, should be provided to families in advance of receiving AFOs.

Keywords:

• Cerebral palsy
• ankle-foot orthoses
• parent experience
• qualitative research
• pediatric orthotics

Acknowledgment

The authors thank clinicians at Glenrose Rehabilitation Hospital, staff at the Cerebral Palsy Association in Alberta, and Cerebral Palsy Canada Network, for assisting with recruitment. The authors appreciate the time and effort of the parents who participated in the study and shared their experience.

Disclosure statement

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

Additional information

Funding

This study was supported by the Glenrose Rehabilitation Foundation clinical research grant in Edmonton, Alberta, Canada.