Caregiver perspectives on powered mobility devices and participation for children with cerebral palsy in Gross Motor Function Classification System level V

• Published in: Developmental medicine and child neurology Vol. 66; no. 3; pp. 333 - 343
• Main Authors: Sloane, Bethany M., Kenyon, Lisa K., Logan, Samuel W., Feldner, Heather A.
• Format: Journal Article
• Language: English
• Published: England 01.03.2024
• Subjects: Caregivers; Cerebral Palsy; Child; Child, Preschool; Emotions; Humans; Severity of Illness Index
• ISSN: 0012-1622; 1469-8749; 1469-8749
• DOI: 10.1111/dmcn.15718

Aim To describe caregiver experiences, perceptions, and device preferences between a modified ride‐on car (MROC) and an Explorer Mini, including perceived changes in participation, barriers, and benefits for young children with cerebral palsy (CP) classified in Gross Motor Function Classification System (GMFCS) level V. Method A subset of data were analyzed from a larger multisite study. Semi‐structured interviews were conducted with 10 caregivers of children with CP in GMFCS level V across a 16‐week trial with two mobility devices. Each interview was audio‐recorded, transcribed verbatim, and analysed using constant comparison methods. Results Seven of 10 caregivers preferred the Explorer Mini over the MROC. Four themes emerged. One related to the perceived benefits and barriers of each device (ease and convenience is essential) and three related to perceived changes in participation: (1) autonomy enacted through mobility; (2) belonging and being present; and (3) participation recognized as an area of growth. Interpretation Despite limited consideration of powered mobility for this population, caregivers of children in GMFCS level V reported similar benefits and barriers compared to children in other GMFCS levels shown in the literature. Particularly, caregivers perceived positive changes in their child's participation and recognized the ability for continued improvements in participation when using powered mobility. What this paper adds Children with cerebral palsy classified in Gross Motor Function Classification System level V are often excluded from powered mobility use and research. Despite this, caregivers reported positive experiences for their children. Caregivers felt that participation in powered mobility led to increased autonomy and overall sense of inclusion and belonging for their children. Most caregivers preferred the Explorer Mini over the modified ride‐on car but recognized that both devices had benefits and barriers to use. What this paper adds Children with cerebral palsy classified in Gross Motor Function Classification System level V are often excluded from powered mobility use and research. Despite this, caregivers reported positive experiences for their children. Caregivers felt that participation in powered mobility led to increased autonomy and overall sense of inclusion and belonging for their children. Most caregivers preferred the Explorer Mini over the modified ride‐on car but recognized that both devices had benefits and barriers to use. This original article is commented on by Jahan and Islam on pages 276–277 of this issue.