SPECIAL TRANSPORT RESTRAINT NEEDS FOR CHILDREN WITH DISABILITIES AGED 0-18 YEARS GR 95-8 VIC• VicRoads REPORT DOCUMENTATION PAGE Report No.: Report Date: ISBN: Pages: GR 95-8 September 1995 0730649342 17 + Appendices Title and Sub-title: Special Transport Restraint Needs for Children with Disabilities Aged 0-18 Years Author: Lisa Vale, Occupational Therapy Department, The Royal Children's Hospital, Melbourne, Victoria 3052 Perfonning Organisation(s): Sponsoring Organisation: Pat Rogerson Deanne Perry VicRoads Federal Office of Road Safety Road Safety Level 5 Cox Building 60 Denmark Street 15 Mort Street KEW VIC 3101 CANBERRA AUSTRALIA ACT 2601 Abstract: The aims of this research project are: 1) Identify the diagnoses that predispose children to difficulty using standard car restraints. 2) Estimate the number of children with the relevant diagnoses who may require special car restraints. 3) Survey a sample of the parents of children with one of the selected diagnoses to investigate the specific problems they are experiencing with car restraints. Seven main neurological diagnoses were selected: cerebral palsy, spina bifida, muscular dystrophy, spinal muscular atrophy, intellectual disability, acquired brain damage (eg cerebral hypoxia), and others (eg encephalitis, meningitis, brain tumor, arteriovenous malformation). The number in Victoria needing specialized restraints was estimated as 6,200 children, 0.52 % of the population aged 0-18 years with neurological disabilities and an additional number of children with behavioural difficulties and orthopaedic disabilities. The problems and improvements centred around the comfort of the child and ease of use of the car restraint, including prevention of misuse by the child. Key Words: (IRRD except where *) Disclaimer: Safety Belt Vehicle Occupant This report is disseminated in the interests Restraints of information exchange. The views Child expressed are those of the author(s), and Car seat not necessarily of VicRoads. Disabled Reproduction of Fonn and Completed Page is Authorised. A JOINT ROYAL CHILDREN'S HOSPITAL, OCCUPATIONAL THERAPY DEPARTMENT AND VIC ROADS PROJECT, FUNDED BY THE FEDERAL OFFICE OF ROAD SAFETY Lisa Vale Occupational Therapist Royal Children's Hospital F1emington Road Parkville Melbourne Australia 3052 ISBN Number: o 7306 49342 Available from: VicRoads Bookshop 60 Denmark Street KEW VIC 3101 Telephone: (03) 854 2782 Fax. (03) 854 2468 List of Tables ii Aclmowledgements iii Executive Summary iv 1.0 Introduction 1 2.0 Method 2 2.1 Identifying the Diagnosis 2 2.2 Incidence 2 2.3 Sample Selection 2 2.4 Survey 4 3.0 Results 5 3.1 Number of New Cases per Year 5 3.2 Responses to Parent Survey 7 3.3 Type of Restraints Used 9 3.4 Problems Reported 9 3.5 Improvements Suggested 12 3.6 Estimated Number of Specialized Restraints Needed 14 4.0 Discussion 14 5.0 Conclusion 16 6.0 Recommendations 17 APPENDICES Appendix A Table Al and References for Incidence Rates. Appendix B Tables BI-B4: Description of Children in the Survey Appendix C Tables CI-C4: Reported Problems by Type of Restraint Appendix D Tables DI-D4: Reported Problems by Age & Diagnostic Grp Appendix E Tables El: Suggestions for Improvements by Diagnostic Grp Appendix C Parent Survey Appendix D Type of Car Restraints Used. : ..... : .:' . ::<:: REPORT Table 1 Initial Sample and Final Sample of Children from Royal Children's Hospital Inpatient Medical Records. Table 2 Incidence Rates per 100,000 Population Table 3 Response Rate by Age and Diagnostic Category Table 4 Problems Reported at Each Age Range. Table 5 Suggestions for Improvements. APPENDICES Table Al Estimated number of new cases per year of cbildren with clisabiIities from incideoce rates and annual reported number of cases provided by Royal Children's Hospital and, where appropriate, the Perinatal Data Unit. Table Bl Age distribution of total sample from Royal Children's Hospital inpatient records. Table B2 Response to survey by diagnosis. Table B3 Number (%) of children in each age group for all types of diagnosis. Table B4 Type of car seat Or restraint used for age ranges 0·6 months, 6 months·4 years, 4--8 years and 8 years and over. Table Cl Problems reported with car seat or restraint for 0-6 month olds for each type of restraint used at the appropriate age. Table C2 Problems reported with car seat or restraint for 6 month· 4 year olds for each type of restraint used at the appropriate age. Table C3 Problems reported with car seat or restraint for 4·8 year olds for each type of restraint used at the appropriate age. Table C4 Problems reported with car seat or restraint for 8 years or older for each type of restraint used at the appopriate age. Table Dl Problems of car restraints used at 0·6 months as reported for the diagnostic groups. Table D2 Problems of car restraints used at 6 months • 4 years as reported for the diagnostic groups. Table D3 Problems of car restraints used at 4·8 years as reported for the diagnostic groups. Table D4 Problems of car restraints used at 8 years and over as reported for the diagnostic groups. Table El Suggestions for improvements made by parents with children in each diagnostic group. iii ACKNOWLEDGEMENTS The author acknowledges the assistance of Lyndal Bond of the Clinical Epidemiology and Biostatistics Unit, Royal Children's Hospital in the survey design, analysis and summary of collected data. iv EXECUTIVE SUl\1MARY Obtaining safe and comfortable car restraints is often a major issue for parents of children with disabilities. A joint Royal Children's Hospital Occupational Therapy Department and VicRoads research project was undertaken to identify the disabilities which are most likely to cause the child to have problems with standard restraints, estimate the number of children with these disabilties and identify the problems they experience. The seven main neurological diagnoses selected for inclusion in the sample were cerebral palsy, spina bifida, muscular dystrophy, spinal muscular atrophy, intellectual disability, acquired brain damage (including cerebral hypoxia, near drowning and cerebrovascular accident) and other neurological conditions (including meningitis, encephalitis, arteriovenous malformation, malignant brain tumour and aneurysm). To detennine the incidence rates of the selected diagnoses a combination of sources were used, they included reference and journal articles, consultant doctors' opinion, the Victorian Perinatal Data Collection Unit and the Royal Children's Hospital inpatient medical records. To survey parents regarding problems with restraints, a sample of 566 children was drawn from the Royal Children's Hospital inpatient medical records. The children were identified for inclusion by ICD9 code recorded in their medical history. Low numbers of children in the 0-8 year age range were sampled because a less specific diagnosis is likely to be given to younger children. Overall 70 % of the sample was over 8 years old. v The combination of the incidence sources estimated a total number of 468 new cases of the selected diagnoses per year. It is estimated that 70% of these children (327) may require specialised car restraints. This gives a total of approximately 6,200 children aged o - 18 years in Victoria (0.52 % of this population) who may require specialised car restraints due to neurological conditions. Additionally, there would be some children with behaviourial difficulties and others, with short term physical impariments such as hip dislocation, who would also require specialised car restraints. There was an overall response rate of 54 % in the survey. The parent responses indicated consistent problems across the majority of diagnostic groups for the 0-6 month and 6 month to 4 year age group. These were: difficulty with head control, inability to lie/sit straight in the seat and discomfort over long journeys. From 4 years onwards the problems differed across each diagnosis, but discomfort on long trips remained a common issue. The range of problems addressed in the 4 years onwards groups show the need for further development and refinement of specialized car restraints for this age group. It is clear from the parents who responded to the survey that car restraints are an important issue in the safe and comfortable management of their child's daily life. More detail is needed on the car restraint needs of the younger age group of 0-8 years with neurological disabilities who were under represented in this study's sample. Continued liaison between parents, health professionals, safety experts and car restraint manufacturers is required to continue to provide the most safe and comfortable car restraints for children with disabilities. ~ \ i I I 1 l~O:::::..:::.::::'. .',::.: ",' :.... ...::INT:' : .......'.. :' .....'R<lB" :..... ":":" U:J3':':"1:IO' :: .... ,.:.:': ::,' :":,.:: "N' ".': ::",:/::,:: ': "':. ,... .. :.: .... :.:.;.: ..: .. -: .. :.: .. :.:.:.: .. ':.:.:: .. :.:.:: .. :-.;";::;"'-. It is often difficult for children with disabilities to be safely and comfortably restrained in a Standards Association of Australia Approved child restraint. This has been of great concern to parents, health professionals and safety experts. In Australia there are some specifically designed car restraints for children with disabilities available. However these car restraints have not been tested by the Standards Association of Australia so their ability to safely restrain a child on impact is not determined. Car restraint manufacturers have felt that the cost of the car restraint testing process