Amy F Bailes1, Mary Gannotti2, Danielle M Bellows2,3, Michele Shusterman4, Jennifer Lyman5, Susan D Horn6. 1. Division of Occupational Therapy and Physical Therapy, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA. 2. Department of Rehabilitation Sciences, University of Hartford, West Hartford, CT, USA. 3. Connecticut Children's Medical Center, Hartford, CT, USA. 4. CP NOW, Greenville, SC, USA. 5. CP Collaborative, New Orleans, LA, USA. 6. Department of Population Health Sciences, University of Utah School of Medicine, Salt Lake City, UT, USA.
Abstract
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.
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.