Supportive mobility device use across the life span by individuals with cerebral palsy: A qualitative study

• Published in: Developmental medicine and child neurology 2022-11, Vol.64 (11), p.1392-1401
• Main Authors: Feldner, Heather A., Gaebler‐Spira, Deborah, Awasthi, Varun, Bjornson, Kristie
• Format: Article
• Language: English
• Subjects: Adolescent; Caregivers; Cerebral Palsy; Female; Humans; Longevity; Male; Qualitative Research; Self-Help Devices
• ISSN: 0012-1622; 1469-8749
• DOI: 10.1111/dmcn.15243

Aim To understand the mobility experiences, supportive mobility device (SMD) use, and desired participation outcomes of individuals with cerebral palsy (CP) across the life span, and describe how perspectives of rehabilitation care and professional resources may influence mobility decision‐making processes and outcomes. Method In the second phase of an overarching study, focus groups were conducted with 164 participants (68 individuals with CP; 32 females, 36 males; mean age 17y 8mo, SD 11y 11mo, range 3–68y), 74 caregivers (50 females, 24 males), and 22 healthcare providers (14 females, eight males) across four US cities. Sessions were audio‐recorded, transcribed, and analysed using constant comparison. Results Six themes emerged. Five presented across all stakeholder groups: (1) the system is broken; (2) equipment is simultaneously liberating and restricting; (3) adaptation across the life span; (4) designed for transport, not for living; and (5) sharing our stories and sharing resources. One theme (theme 6) was specific to healthcare providers: caught in the middle. Interpretation This qualitative study underscores the simultaneous value and frustration associated with SMDs as described by the community with CP, and recognition among all stakeholders of the need to improve connections and resource networks within the community with CP to improve SMD design and provision processes across device types and across the life span for individuals with CP. What this paper adds Supportive mobility devices (SMDs) were most often equated with freedom, participation, and independence. Frustration with SMDs across the life span persisted with regard to design, function, cost, and maintenance. Stakeholders in the community with cerebral palsy are seeking greater networking and resource sharing to enhance SMD provision processes. Access to appropriate SMDs across the life span and the need for system improvement are critical. Uso de dispositivos de mobilidade de suporte ao longo da vida por pessoas com paralisia cerebral: um estudo qualitativo Objetivo Compreender as experiências de mobilidade, o uso de dispositivos de mobilidade de apoio e os resultados de participação desejados de pessoas com paralisia cerebral (PC) ao longo da vida e descrever como as perspectivas de cuidados de reabilitação e recursos profissionais podem influenciar os processos de tomada de decisão de mobilidade e resultados. Método Na segunda fase de um estudo abrangente, foram realizados grupos