The perceptions and experiences of ankle-foot orthosis use among youth with cerebral palsy and their parents: A qualitative study with focus on activity and participation
Jessica Stockman, Ann Alriksson-Schmidt, Eva Jason-Åndell, Ira Jeglinsky-KankainenIntroduction:
Ankle-foot orthosis (AFO) is the most common orthotic device for children with cerebral palsy (CP), improving stride length, walking speed, and stability. Although AFO use is highest in children ages 6-12 years, it often decreases with age, and little is known about how youth and parents perceive AFO use in daily life, particularly regarding activity and participation.
Aim:
To explore the perceptions and experiences of AFO use in daily life among youth with CP and their parents, with a focus on activity and participation.
Method:
This qualitative study included 18 interviews with 9 AFO users with CP (8-15 years) and their parents. Data were analyzed using a descriptive phenomenological approach.
Results:
Four closely related themes emerged. The first, “AFO use evokes emotions and feelings,” captured positive and negative emotional responses to wearing AFOs. The second, “AFO use requires adaptation in everyday life,” described practical adjustments needed to integrate AFOs into daily routines. The third, “Experience creates awareness of autonomy and usefulness,” reflected how youth and parents gradually develop focused knowledge of when and how AFOs support daily functioning. Finally, “Participation in the AFO provision process” highlighted the role of communication and collaboration between families and professionals.
Conclusion:
AFO use in youth with CP involves complex emotional, practical, and participatory dimensions. Active inclusion of families through collaborative goal-setting from the outset of the orthotic process, and throughout follow-up, alongside consideration of emotional and social factors, can optimize orthotic outcomes and psychosocial well-being.