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Caregiver knowledge and preferences for gross motor function information in cerebral palsy
Author(s) -
Bailes Amy F,
Gannotti Mary,
Bellows Danielle M,
Shusterman Michele,
Lyman Jennifer,
Horn Susan D
Publication year - 2018
Publication title -
developmental medicine and child neurology
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.658
H-Index - 143
eISSN - 1469-8749
pISSN - 0012-1622
DOI - 10.1111/dmcn.13994
Subject(s) - gross motor function classification system , cerebral palsy , motor skill , gross motor skill , psychology , physical therapy , medicine , physical medicine and rehabilitation , developmental psychology
Aim To determine caregiver knowledge and preferences for gross motor information and examine differences across Gross Motor Function Classification System ( GMFCS ) levels. Method A questionnaire was developed. Respondents reported GMFCS knowledge, preference for knowledge, and experience with GMFCS and motor curve information. Results In total, 303 caregivers of children with cerebral palsy ( CP ) ( GMFCS level I: 22%; GMFCS level II : 16%; GMFCS level III : 15%; GMFCS level IV : 23%; GMFCS level V: 24%) completed the questionnaire. Forty‐five per cent of caregivers knew the GMFCS level at survey, and only 31% knew how their child's motor development compared with others of similar age and level. Caregiver education level was associated with knowledge ( p <0.001). Most prefer discussing motor development with a therapist. Of caregivers who knew their child's GMFCS level at survey, 83% reported it would be helpful to revisit the topic over time. Compared with GMFCS level IV and V, caregivers of children in GMFCS levels I to III preferred to learn at the same time as CP diagnosis, ( p =0.04) and were more likely to report having received visual aids ( p =0.04). Caregivers of children in GMFCS levels IV and V found it more difficult to learn their child's level ( p <0.001) versus those caring for children of GMFCS levels I to III , and reported seeing pictures with descriptions more informative ( p =0.03). Interpretation Caregivers of children with CP may not know GMFCS and motor curve information, and vary in experience and preferences for this information. What this paper adds Fewer than half of caregivers of children with cerebral palsy (CP) know their child's Gross Motor Function Classification System level. Most want to know how their child's function compares to other children with CP. The majority of caregivers would like to revisit the topic over time. Caregivers want to discuss gross motor information with the therapist and doctor.