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 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 is too large in proportion to the perceived small population wanting to purchase the specialized restraints. The experience of the Occupational Therapy Department staff at the Royal Children's Hospital, Melbourne, suggests that children with neurological impairment have the most difficulty using standard restraints. Children with neurological disabilities can experience difficulty maintaining head and trunk control due to either increased or decreased muscle tone. Therefore, they have difficulty with independent sitting and mobility. Because spinal deformities may occur as a result of the muscle tone imbalance, the child's sitting ability can be further impeded. 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. 2 2.1 IDENTIFYING THE DIAGNOSES Six consultant doctors from the Royal Children's Hospital, Melbourne, and one consultant doctor from the Monash Medical Centre, Melbourne, were interviewed to identify disability diagnoses that predisposed a child to difficulties using standard car restraints. From the interview information and further discussion with the Royal Children's Hospital Occupational Therapists, seven main neurological diagnoses were selected for inclusion in the study. They were cerebral palsy, spina bifida, muscular dystrophy, spinal muscular atrophy, intellectual disability, acquired brain damage (eg cerebral hypoxia) and other neurological conditions (eg encephalitis, meningitis, brain tumour, arteriovenous malformation) 2.2 INCIDENCE The Australian Bureau of Statistics does not have any definitive data on the incidence of children with specific diagnoses in Victoria. To obtain incidence estimates a combination of text book and journal references, consultant doctors' clinical experience, the Victorian Perinatal Data Collection Unit and The Royal Children's Hospital inpatient medical records were used. This information (Summary TableAl and references in Appendix A) was the basis of the estimation of incidences for the diagnostic groups. 2.3 SAMPLE SELECTION A sample of 566 Victorian children aged between 0-18 years with one of the defined diagnoses was selected from the Royal Children's Hospital inpatient medical records. 3 Initially there were to be 100 children in the seven diagnostic categories with each age group in the survey containing 25 children (survey age groups: survey age groups 0-6 months, 6 months - 4 years, 4-8 years, 8 years and over). However the Royal Children's Hospital data base of inpatient medical records did not contain this number and distribution of children in any of the diagnostic categories. The children were identified for inclusion in the incidence search and sample by their ICD9 code describing their condition recorded in their inpatient history by medical staff. The initial incidence search in the inpatient medical records showed that cerebral palsy, spina bifida and acquired brain damage were the largest disability groups. The program aimed to select 240 children from each of the cerebral palsy and spina bifida groups. Because the acquired brain damage group covered a wide variety of conditions some of which may not have resulted in disability, the smaller sample figure of 160 cases was targeted. The remaining smaller diagnostic groups of muscular dystrophy, spinal muscular atrophy, intellectual disability and other neurological conditions also had a target number of 160 children each. Because there were low numbers in the 0-8 years age ranges in every diagnostic group the computer program selected all children in these 0-8 year age range in every diagnosis. The remaining subjects were randomly selected from the 8-18 year age group in each diagnostic group. Each diagnostic sample was complete when: a) The number in the sample reached 240 in cerebral palsy and spina bifida or 160 in spinal muscular atrophy, muscular dystrophy, intellectual disability, acquired brain damage and other neurological conditions. OR b) Every suitably aged child 0-18 years was taken from the diagnostic category. 4 A further 41 children were excluded from the categories of acquired brain damage and other neurological conditions. These children were excluded because although they had a primary leD 9 code of meningitis, encephalitis, near drowning or cerebral hypoxia their medical histories did not include the relevant secondary disability code. Therefore these children had recovered fully from their condition and did not have a residual neurological disability. The sampling is summarised in Table 1. Table 1: Initial Sample and Final Sample of children from The Royal Children's Hospital inpatient Medical Records DIAGNOSTIC GROUP INITIAL SAMPLE DECEASED EXCLUDED FINAL (sampling fraction) (no residual SAMPLE disability) Cerebral Palsy 240 (22%) 26 - 214 Muscular Dystrophy 57 (34%) 4 --- 53 Spina Bifida 240 (39%) 74 - 166 Spinal Muscular 36 (82%) 18 --- 18 Atrophy ------ Intellectual Disability 21 (14%) 4 --- 17 Acquired Brain Damage 179 (27%) 40 41 98 and Other Neurological ------Conditions Total 773 (28%) 166 41 566 2.4 SURVEY A parent survey was developed and trialed on ten families selected from an early intervention program for children with disabilities attached to the Royal Children's j 5 Hospital. The refined questionnaire (Appendix F) was then sent out to the selected 566 parents. The distribution of ages by diagnostic category of the 566 children in the total sample is shown in Table BI (Appendix B). A second copy of the questionnaire was mailed out two weeks later to those who had not responded and then finally a telephone reminder call was made to return the survey when completed. The questionnaire consisted of ten questions investigating: child's age. child's diagnosis. car restraints used in each age group. the good and bad points of the car restraints. the professional assistance received. parent's suggestions for improvement. The open ended questions were coded manually and the data entered and verified into a computer file. The data was then analysed using the SAS computer software. A summary of the response rate to the mailed questionnaires plus mail and telephone reminders within diagnostic categories is shown in Table B2 (Appendix B). and the distribution of ages of the 269 children whose survey forms were completed is shown in Table B3. 3::U:i{RESUU/1JS: j /:::: ",: ' =:::": ::};;...... :.:.:: .. ::.:.:. :...... 3.1 NUMBER OF NEW CASES PER YEAR The estimated number of new cases of children with neurological disabilities per year in Victoria is shown in Table Al (Appendix A). The three main categories are Intellectual Disability, Cerebral Palsy and Spina Bifida with less than ten per year in any of the other groups. Estimates for these conditions came from a number of sources including general reference material, the Royal Children's Hospital inpatient records and, where possible 6 and relevant, the Perinatal Data Unit. Table 2 is a summary of the most reliable of these estimates or of the only available estimates. Table 2: Incidence Rates per 100,000 Population Incidence per 100,000 Diagnosis population Reference Cerebral Palsy: 200 Stanley FJ & Blair E, '91 Muscular Dystrophy: 27 Scheverbrandt et al, 1986 Spina Bifida: 200 Welch K & Winston K, 1987 Spinal Muscular 4 Pearn 1978 Atrophy: Intellectual Disability: 300 Hagberg & Kyllann,1983 Acquired Brain Damage: CVA: 2.5 Schoenberg et al 1978 Other Neurological Conditions: 11 Beghi E. et al 1984 Meningitis: 7 Encephalitis: Beghi E. et al 1984 There were no estimations for the broader conditions (such as near drowning, cerebral hypoxia and arteriovenous malformation) and the figure listed for the Royal Children's Hospital incidence rates in those diagnoses is not considered accurate. Taking this into account the diagnoses were separated into two groups. The prevalence rate of 200-2501100,000 live births for cerebral palsy is considered to be the most accurate available. This is based on the numbers collected by the Western Australia Cerebral Palsy Register. Using the incidence of 200/100,000 and the average annual number of live births in Victoria from 1981-1993 provided by the Australian Bureau of Statistics, it is estimated that there would be about 126 new cases of cerebral palsy in Victoria per year. 7 The incidence of spina bifida falls between the 200/100,000 rate suggested by Welch & Winston (1977) and the very different figure of 20/100,000 from the Victorian Perinatal Data Collection Unit. These predict a wide discrepancy in the estimated number per year in Victoria (43 to 126). Thus for the rrrst group, cerebral palsy, muscular dystrophy, spina bifida and spinal muscular atrophy, the estimated number of new cases is 267 per year using the incidence rates from cited sources and the average number of live births per year in Victoria (62,654) from 1976-1994 (approximately 0.43% of the population of 0-18 year olds). For the second group, the estimated number of those with intellectual disabilities or acquired brain damage is about 201 per year. It should be noted however, that as these conditions can occur at any time during childhood this number (which is approximately 0.32 % of the 0-18 years old population) may overestimate the number of these children with neurological disabilities in the younger age ranges. Overall there is an estimated number of 468 children per year who are considered new cases (either at birth or in childhood) of one of the seven selected diagnoses. This prediction of children with neurological disabilities could be higher, however, as the population in Victoria is increases. Also it should be noted that children with orthopaedic problems, for example, hip dislocation or multiple fractures, as well as children with behaviourial difficulties are not included in this estimation. 3.2 RESPONSES TO PARENT SURVEY From the 566 questionnaires despatched, 65 were returned "not known at this address" and 269 were returned completed. Subtracting the 65 returned unopened there was a 54 % response rate. Of those who responded, about 15 % of parents wrote that their child was 8 not disabled or was minimally disabled. Another fourteen percent stated the survey was not applicable to their child or family now. The highest response rates came from parents of children with cerebral palsy and spina bifida. Table 3 shows the response rate for the survey. Table 3: Response Rate by Age and Diagnostic Category Age Cerebral Muscular Spina Spinal Other Total Palsy Dystrophy Bifida Muscular Neuro Response Atrophy -logical 0-6mths 0/1 0/0 3/6 0/0 012 3/9 6mths-4yrs 8/16 3/7 9126 2/3 4/9 26/61 4-8yrs 16122 6/13 23/30 0/3 5/6 50/74 8 yrs & 88/175 17/33 40/104 7/12 35/98 187/422 older age 1/0 1/0 1/0 3/0 .. mIssmg Total 1131214 27/53 75/166 10/18 44/115 269/566 52% 51% 45% 55% 38% 48% Fifty-six percent of those sampled were boys. As expected over 90 % of those with muscular dystrophy were boys. The mean age of the children surveyed was 11 years 11 months (sd 5 years 4 months). Overall 70 % of the children sampled were over 8 years old. This proportion reflects the age distribution of the sample but probably does not reflect the age distribution of children 9 with these conditions in the community. At the Royal Children's Hospital young children are given an unspecified diagnosis code of 'developmental delay' until a firm diagnosis is made later in childhood. Therefore the children who do have a neurological disability but do not yet have an accurate ICD 9 code would not have been identified in the Royal Children's Hospital incidence records. 3.3 TYPE OF RESTRAINTS USED Table B4 (Appendix B) shows the type of car seat or restraint used by the sample at 0-6 months, 6 months to 4 years, 4 to 8 years and 8 years and older. The majority used standard restraints at all ages. In the 4-8 years age range about 7 % of children were using special purpose car seats or special disability restraints. With the children over 8 years 19% used wheelchair or special purpose car seat and/or harness. Note those reporting use of a bassinet at 0-6 months were all children 8 years or older. Whilst not recommended now, the bassinet used in the past was the only one available at the time. Therefore this result would not represent a true picture of the restraints used by such 0- 6month old babies in 1995. Appendix G lists all the car restraints reported on by the respondents. 3.4 PROBLEMS REPORTED Maintenance of head control was a problem for all age ranges as was sitting straight and arching out of the seat. The restraints were reported as uncomfortable on both short trips and long trips. Need for special installation was reported more for the 8 years and older group. This reflects the greater use by this age range of special restraints and wheelchairs. A little under half those responding to these sections of the questionnaire reported experiencing no problems with the car restraints they used. 10 Table 4 summarises these problems for the four age ranges. Table 4: Problems Reported at Each Age Range 0-6 6mth- 8yrs or months 4yrs 4-8yrs older N (%)" N (%)" N (%)" N (%)" Not maintain head control 29 (35) 43 (41) 25 (27) 16 (29) Not lie/sit straight in seat 28 (33) 41 (39) 21 (23) 17 (30) Extends/arches out of seat 16 (19) 28 (27) 21 (23) 19 (34) No support for head when child asleep (1 ) 5 (5) 4 (4) (0) Lumbar back support needed 4 (4) No adjustable positions available 2 (2) 3 (3) 2 (4) Design & fabric made child too hot 4 (5) Harness uncomfortablelill-fitting (1) 3 (3) 6 (6) 5 (9) Child can manoeuvre out of seat 1 (1 ) (1 ) 4 (4) (2) Sides of seat prevented easy transfer of child into seat 2 (2) (1 ) (1 ) (2) Surface of seat is too rigid 2 (2) Seat not deep enough from bottom to knees (1 ) Child is too low on seat 2 (2) 3 (3) 4 (7) Not comfortable on short trips 20 (24) 18 (17) 7 (8) 7 (13) Not comfortable on long trips 37 (44) 36 (34) 28 (30) 18 (32) Needed special & expensive installation 16 (19) 18 (17) 17 (18) 20 (36) Cannot be transferred to another car 2 (2) Car seat too large for proper fit in small cars 1 (2) No problems experienced (stated) 47 51 (49) 44 (47) 26 (46) Maximum number responding to set of questions 84 105 93 56 Number with child having been in this age range 269 266 237 187 ·Percentage calculated from maximum number responding to this set of questions 11 Tables C1 to C4 (Appendix C) provide details of problems experienced. for each type of restraint used in the appropriate age range. The percentage of respondents who reported no problems varies from 29% for the 0-6 mth infants to 17% for the children 8 years and older. The percentage of total respondents who reported no problems is shown in tenns of the total sample assuming that missing responses could be positive. Thus the percentage with no problems is a minimum value ranging from 19% to 10%. With the use of the capsule or "two-in-one seat", more infants had problems with head control (24%) and lying straight (17%). These restraints were also reported to be more uncomfortable for long trips than bassinets (34 % compared with 12 %, p = .003). More problems are reported for those using special seats than ordinary seat belts for 8 years and older age group. This probably reflects those with the most severe disabilities having to use special seats. Tables D1 to D4 (Appendix D) report problems by disability condition of the subjects. The percentage is based on the number of replies to the question and excludes the respondents with missing infonnation. At the 0-6 month age group there were three common problems across all diagnostic groups excepting "other neurological conditions". Overall 10% of parents reported that their child was unable to lie/sit straight in seat, 14 % reported discomfort on long journeys and 11 % reported difficulty maintaining head control (Table D1). In the 6 months - 4 years age group again the same three problems were highlighted. Overall, 16% had difficulty maintaining head control, 15% unable to sit straight in seat, 13 % reported discomfort on long journeys (Table D2). 12 In the 4-8 years age range the cerebral palsy group showed the same three problems in addition to 13 % of the parents seeing the installation of the car restraint as an issue. This reflects the difficulty that children with cerebral palsy have in maintaining their head trunk control causing a higher proportion needing special car restraints installed. In comparison the children with spina bifida had less difficulty with head control (7 %) but experienced continued discomfort on long journeys (8%) (Table D3). In the 8 years and over age group again the installation of a specialized restraint was a major problem for the cerebral palsy group (15%). It is noticeable that the number of problems for spina bifida respondents in this age group was reduced. The small sample of spinal muscular atrophy showed continued problems with head control (30 %). inability to sit straight in seat (20%) and discomfort on long journeys 20% (Table D4). 3.5 IMPROVEMENTS SUGGESTED About half the respondents suggested some improvements. These suggestions included improving support for the head and trunk and improving the harness to make it more confortable for the child to use and more difficult for the child to take their arms out of the harness. Suggestions from the 128 parents (out of 269) amounted to the following percentage responses to the three major problems addressed: 1. To improve trunk support (15 %) 2. To improve harness for ease of application & comfort(15 %) 3. To improve head support (14%) 29% out of the total number of parent suggestions reported that "all was OK" with their car restraint. 13 Table 5: Suggestions for Improvements N (%) Increase head support 18 (14) Increase seat depth 3 (2) Increase trunk support 19 (15) Provide more adjustable positions 16 (12) Improve harness to stop child taking arms ouVmake 19 (15) harness easier to get on child Make installation cheaper and eaiser to access for SPC 4 (3) Child to wear soft collar to increase head control 0 (0) Make seats less expensive 5 (4) Provide abductor pommel between legs 1 (1 ) Increase selection of larger car seats available for older 6 (5) children Make seats easier for transferring child in and out 13 (10) Tailor made inserts for increase trunk head support 2 (2) More professional assistance needed in prescription and 10 (8) selection process of car restraint More aesthetic colour/look of seat 1 (1 ) Provide swivel front passenger seat for easier transfer in 3 (2) for adolescent children Provide footrest on car seat. 4 (3) All OK 37 (29) Total suggestions 161 Total making suggestion 128 Number making no suggestions 141 Table El (Appendix E) shows suggestions for improvement for the major disability groups in this study. About 20 % of parents of children with cerebral palsy suggesting improvements recommended making it easier to transfer children in and out of the seat. For example, having lower sides on booster and car seats and making the harness easier to put on and take off. A similar percentage of parents in each disability group wanted improved head and trunk suppon. 14 3.6 ESTIMATED NUMBER OF SPECIALISED RESTRAINTS NEEDED Overall 27 % replied that their child had a minimal disability or the survey was not appropriate for them. 70% replied that their child was disabled and identified some problems with car restraints. From these parent responses it is estimated the 70% of children per year with a neurological disability may require specialized car restraints. From Section 3.1, there would be 468 new cases per year in one of the seven selected diagnoses. Therefore, from the data available, an estimated 327 children per year with neurological disabilities would require specialized car restraints in Victoria. This is 0.52 % of the population aged 0 - 18 years, which translates to approximately 6,200 children. The number of children requiring specialized car restraints would increase if children with behavioural difficulties and children with temporary or permanent orthopaedic disabilities were also included in the estimation. 4;'0 ·D.ISGUSSION1, , . : . . .; :::.. ;": ...... :.:.: ...:.;.:.:.:...: ;::;.: ,:.. ". ',. ," ;-, .. The estimation of the incidence in Victoria of each of the selected diagnoses is based on a number of reference sources, none of which are absolutely definitive. Some pertinent points to consider when evaluating these Royal Children's Hospital incidence estimates are that: a) These figures were taken only for the inpatient records, as outpatients are not yet coded by the ICD 9 system. So therefore The Royal Children's Hospital figures do not represent the combined inpatient and outpatient populations of each diagnostic group. b) From the inpatient records selected there were noticeably few cases recorded in the 0-8 years age range in all diagnostic groups. 15 Because children may not be given an accurate ICD 9 diagnosis code at birth or in early childhood, the number of children aged 0-8 years in the sample was limited (30%). Children with neurological disabilities may be given the generic diagnosis of developmental delay in early childhood until a firmer diagnosis is made. There is no specific code for neurological developmental delay so therefore some children aged 0-8 years who would be eligible to be included in the sample were not, because they did not yet have an accurate ICD 9 diagnosis. Therefore the age distribution of the sample is reflective of data from the ICD 9 codes in the the Royal Children's Hospital medical records, but not reflective of the age distribution of younger children with neurological disabilities in the wider community. The survey was a long and complex document asking parents to answer questions across the four age ranges. Because the Royal Children's Hospital medical records showing overall incidence did not have an even spread of ages across each diagnostic group there was a higher number of older children in the sample. Therefore the majority of information gathered was reflective of these older children. Whilst this meant that almost all respondents could answer all questions across the age ranges, it also meant that they had to remember what happened many years ago. The problems they are experiencing now are likely to be more salient than the problems which occurred over ten years ago. The limited number of children under 8 years meant that there was minimal feedback to reflect the change in the standard car restraints now available. The majority of respondents were parents of children with cerebral palsy and spina bifida (113 & 75 out of a total of 369). 16 It is the Royal Children's Hospital Occupational Therapists' opinion that the introduction of the two in one convertible baby/toddler car restraints over recent years has made a positive contribution to the management of children with neurological disabilities, despite the fact that 'two-in-one' restraints were reported to be more uncomfortable for long trips, and more children had problems with head control and lying straight, than bassinets. There is a large range of these car seats for selection and the open design with adjustable lying/sitting positions has, from clinical experience, assisted the comfortable positioning of some of the younger children (0-4 years) with neurological disabilities. The number of children with neurological disabilities in Victoria is not readily available. U sing the best sources of information, however, it is estimated that the number of new cases in Victoria with any of the above disabilities was 468 live births per year (over the 14-year period 1981 - 94). It is also difficult to predict what proportion of children in each diagnostic group, or in total, will need specialized car restraints. The survey showed that 70% of parents said their child, across the age groups, had some problem/s with car seating. This was taken as a guide to the proportion of children who have a level of disability requiring specialized car seating. Therefore it is estimated that 327 children with neurological disabilities per year of age may need specialized car restraints in Victoria. This would amount to approximately 6,200 children aged 0 - 18 years at present in Victoria with neurological disabilities requiring specialized car restraints plus an additional number of children with behavioural difficulties and othopaedic disabilities. 17 The problems for children up to 4 years of age as reported by the parents were consistent across diagnostic groups. The infonnation in these age groups is limited by their low number within the sample however the main problems reported were: 1. difficulty with head control. 2. inability to lie/sit straight in seat. 3. discomfort over long journey. It may be possible to address these problems by designing an insert and/or providing adaptations to the standardized seats now available. For the 4 years onward age group the problems differed in each disability group, but the discomfort on long trips remained a problem. When a specialized restraint system was used the installation was described as expensive and difficult particularly for the cerebral palsy group. The range of problems show the need for further development and refinement of specialized car restraints in 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. '"" ,;",,-" . 1. Further research into the car restraint needs and problems of children aged 0-8 years with neurological disabilities. 2. Further liaison between parents, health professionals, safety experts and car seat manufacturers to continue to provide the most safe and comfortable car restraints for children with disabilities. - APPENDIX A - TABLE Al AND REFERENCES FOR INCIDENCE RATES Tablel\\. Estimated number of new cases per year of children with selected diagnoses from incidence rates and annual reported number of cases provided by RCH and, where approprIate the Perinatal Data Unit Selected diagnoses Source of estimate Incidence rate Estimated number of per1 OO,(XX) of cases per year· Mean (sd) Cerebral palsy Stanley & Blair, 1991 200 125 (5) Muscular dystrophy Scheuerbrandt et at 1986 2r"" 8 (0.3) Spina bifida Welch & Winston, 1987 200 125 (11) Spinal muscular atrophy Peam, 1978 4 3 (0.1) RCH -inpatient records 10 4 (4) Estimated number of new cases with the above disabilities per year 266 (11) Intellectual disability Hogberg & Kyllermann, 1983 300 188 (7.6) Acquired brain damage CVA Schoenberg et 01. 1978 2.5 2 (0.1) Near drowning RCH -inpatient records 3 0 (1) Meningitis Beghi et 01. 1984 11 7 (0.3) Encephalitis Beghi et al. 1984 7 4 Anoxic hypoxia RCH -inpatient records 2 0.2 (1) AVM RCH -inpatient records 0.2 (0.8) Estimated number of new cases with intellecutal disability or acquired brain damage1] 202 (8.3) ·Using average number of live births from 1981-1994 and the reported incidence rate or average number of reported cases over this time. n Live male births 1] Age at which these conditions may ocur varies, hence these numbers may not reflect the number of children with these disabilities in the younger age ranges with respect to car restraints. IJU:FERENCES FOR INCIDENCE RATES Stanley F & Blair E (1991) Why have we failed to reduce the frequency of Cerebral Palsy medical Journal of Australia 154, 623-626. Scheuerbrandt G et al. Screening for Duchenne Muscular Dystrophy - an improved screening test for creative kinase and its application for an infant screen program. Muscle Nerve 1986; 9:11. Welch K & Winston K, 1987 Spina Bifida. In: Myrianthopoulos N.C., Ed. Handbook of Clinical Neurology. Amsterdam: Elsevier Science 1987; 477 Pean J .R. Incidence prevalence and gene frequency studies of Chronic Childhood Spinal Muscular Atrophy. J.Medical Genet 1978 15:409. Schoenberg et ai, Cerebrovascular disease in infants and children; a study of incidence, clinical features and survival. Neurology 1978; 28:763. Hagberg B & Kyllennan in Epidemiology of Mental Retardation - A Swedish Survey. Brain Der 1983, 5:441. Beghi E et al Encephalitis and Aseptic Meningitis. Olmsted County Minnesota, 1950- 1981. Epidemiology Ann. Neurol. 16:283, 1984. Victorian Perinatal Data Collection Unit, Consultative Council on Obstetric and Paediatric Mortality and Morbidity. - APPENDIX B - TABLES BI-B4 DESCRIPTION OF CIllLDREN IN THE SURVEY Table 61 • Age distribution of total saml!le from Ro~al Children's Hosl!itallnl!atlent records Spinal Acquired Cerebral Muscular Spina Intellectual Age of muscular brain Total palsy dystrophy bifida disability atrophy damage· N (%) N (%) N (%) N (%) N (%) N {%} N {%) 0-6 mths 1 (0) 0 (0) 6 (4) 0 (0) 2 (2) 0 (0) 9 (2) 6mths-4yre 16 (7) 7 (13) 26 (16) 3 (17) 8 (8) 1 (6) 61 (11 ) 4yrs-8yrs 22 (10) 13 (25) 30 (18) 3 (17) 5 (5) 1 (6) 74 (13) 8yrs on 175 (82) 33 (62) 104 (63) 12 (67) 83 (85) 15 (88) 422 (75) Total 214 53 166 18 98 17 566 *Includes acquired brain damage, intellectual disability, other neurological conditions *Includes post accident stroke, near drowning, cerebral hypoxia, meningitis, brain tumour, aterio venous malformation and aneurysm Table82 Response to surve~ b~ diagnostic groul! Statu. Cerebral palsy Muscular Spina blflda Spinal muscular Acquired brain Intellectual Other Total dystrophy atrophy damage* disability N % N % N % N N % N % N % N % Number of children (0-18 years) sampted1\ 214 53 166 18 98 17 566 Number responding to survey 113 (53) 27 (51) 75 (45) 10 (56) 27 (28) 14 (82) 3 (na) 269 (54)" Completed 88 (78) 17 (63) 57 (76) 6 (60) 8 (30) 10 (71) (33) 187 (70) Parent stated child had minimal disability 11 (10) 5 (19) 11 (15) 0 (0) 7 (26) 2 (14) 0 (0) 36 (13) Parent stated child had no disability 0 (0) 0 {OJ (1) 0 (0) 3 (11 ) 0 (0) 2 (67) 6 (2) Parent stated survey not applicable to 13 (12) 5 (19) 6 (8) 4 (40) 9 (33) 2 (14) 0 (0) 39 (14) family now Child deceased (1 ) 0 (0) 0 (0) a (0) 0 (0) 0 (0) 0 (0) (0) *Includes post accident stroke, near drowning, cerebral hypoxia, meningitis, brain tumour, aterio venous malformation and aneurysm 1\ This is the total number of children (0·18 years) with an RCH inpatient record for each group "Calculated using as denominator the number surveyed excluding those returned to sender Tabr.63 Number (%) of children In each ag. group for all selected diagnoaea Spinal Acquired Cerebral Muscular Spina Intellectual Age of children muscular brain Other Total paley dystrophy bifida disability atrophy damage· N (%) N (%) N (%) N (%) N (%) N (%) N (%) N % 113 27 75 10 27 14 3 269 0-6 mths 0 (0) 0 (0) 3 (4) 0 (0) 0 (0) 0 (0) 0 (0) 3 (1) 6mths-4yrs B (7) 3 (11 ) 9 (12) 2 (20) 2 (7) (7) (33) 26 (10) 4yrs-8yrs 16 (14) 6 (22) 23 (31) 0 (0) 3 (11 ) (7) (33) 50 (19) Byrs on 88 (78) 17 (63) 40 (53) 7 (70) 22 (81) 12 (86) (33) 187 (70) Missing 1 (1 ) 1 (4) 1 (10) 3 (1 ) Total 113 27 75 10 27 14 3 269 Mean (sd) age as lears_months 12.10 (4.7) 10.40 (5.0) 10.20 (5.1) 11.50 {5.1) 15.00 (4.6) 12.30 (4.1) 7.70 (6.5) 11.11 (5.4) "Includes post accident stroke, near drowning, cerebral hypoxia, meningitis, brain tumour, aterio venous malformation and aneurysm TableB4-Type of car seat or restraints used for the age ranges o-s months, 6 months - 4 years, 4-8 years and 8 years and older. o-s months N % Bassinet 59§ (45.7) Baby safety capsule 66 (51.2) Two in one or convertible seat 4 (3.1) Missing 140 6mths -4 years N % Child safety seat 117 (65.4) Two in one or convertible seat 8 (4.5) Booster and/or hamess 5 (2.8) Special purpose seat and/or hamess 1 (0.6) Other 8 (4.5) Not applicable 3 Missing 127 4yrs - 8 yrs N % Child safety seat 25 (16.2) Booster and/or hamess 81 (52.6) Special purpose seat and/or hamess 10 (6.5) Normal car seat belt 16 (10.4) Other 6 (3.9) Not applicable 29 Missing 102 8 years and older Booster and/or hamess 11 (S.7) Normal car seat belt 98 (59.4) Wheelchair 12 (7.3) Special purpose car seat/hamess 20 (12.1 ) Other 4 (2.4) Not applicable 79 Missing 45 § All who used a bassinet were children 8 years or older 'Percentages calculated from valid responses - APPENDIX C - TABLES CI-C2 REPORTED PROBLEMS BY TYPE OF RESTRAINT Table CI .. Problems reported with car seat or restraint for D-6 month aids for each type of restraint used at the appropriate age. Bassinet Capsules/Two in one 10tal§ n=59 (%r n=70 (%l* n=129 {%r Not maintain head control 5 (8) 17 (24) 22 (17) Not lielsit straight in seat 4 (7) 18 (26) 22 (17) Extendslarches out of seat 4 (7) 9 (13) 13 (10) No support for head when child asleep 0 (0) 1 (1 ) 1 (1 ) Design & fabric made child too hot 0 (0) 4 (6) 4 (3) No adjustable positions 0 (0) 2 (3) 2 (2) Harness is uncomfortable or ill-fitting 0 (0) 1 (1 ) 1 (1 ) Child can manoeuvre out of seat 0 (0) 1 (i) 1 (1 ) Not comfortable on short trips 6 (10) 12 (17) 18 (14) Not comfortable on long trips" 7 (12) 24 (34) 31 (24) Needed special installation 7 (12) 7 (10) 14 (11 ) Sides of seat prevented easy transfer of child into seat 0 (0) 2 (3) 2 (2) No I?:foblems eXl?:erienced (stated) 11 (19) 26 (37) 37 (29) §Totals are dilerent to TableD~because 01 missing information regarding type 01 seal used. -Percentage is calculated from the number who reported using these restraints "Significant at p=0.OO3 TableC2.. Problems reported with car seat or restraint for 6 month· 4 year olds for each type of restraint used at the appropriate age. Safety seat Other Total§ n=125 l%r n=13 {%)** n=138 {%r Not maintain head control 35 (28) 3 (23) 38 (28) Not lie/sH straight in seat 32 (26) 4 (31) 36 (26) Extends/arches out of seat 23 (18) 3 (23) 26 (19) No support for head when child asleep 9 (7) 9 (7) Lumbar back support needed 4 (3) 4 (3) Harness is uncomfortable or ill-fitting 3 (2) 3 (2) Child can manoeuvre out of seat 1 (1 ) 1 (1 ) Sides of seat prevented easy transfer of child into seat 1 (1) 1 (1 ) Child is too low on seat 2 (2) 2 (1 ) Not comfortable on short trips 12 (10) 2 (1S) 14 (10) Not comfortable on long trips 27 (22) 4 (31 ) 31 (22) Surface of seat is too rigid 3 (2) 3 (2) Needed special installation 14 (11 ) (8) 15 (11 ) No ~roblems ex~erienced 34 (27} 5 (3S} 39 (2B} §Totals are dileren! to Table'Dl.because 01 missing information regarding type of seat used. *Includes 4 booster and harness, 1 special booster and harness **Percentage is calculated from the number who reported using these restraints Tablec3. Problems reported with car seat or restraint for 4 - 8 year aids for each type of restraint used at the appropriate age. Booster Safety seat* Special seatl Seat belt &lor harness special harness Total§ n=81 (%)** n=31 {%r n=10 {%r n=16 {%r n=138 (%)** Not maintain head control 14 (17) 6 (19) 3 (30) 1 (6) 24 (17) Not sit straight in seat 13 (16) 6 (19) 1 (10) 20 (14) Extends/arches out of seat 13 (16) 4 (13) 3 (30) 20 (14) No support for head when child asleep 4 (5) 4 (3) Harness uncomfortable/illfitting 4 (5) 1 (10) 5 (4) Child can manoeuvre out of seat 3 (4) 1 (3) 4 (3) Sides of seat prevented easy transfer of child into seat 1 (1 ) (1) Child is too low on seat 2 (2) 1 (10) 3 (2) Not comfortable on short trips 6 (7) 1 (10) 7 (5) Not comfortable on long trips 1G (20) 7 (23) 2 (20) 2 (13) 27 (20) Needed special installation 5 (G) 2 (G) 6 (GO) 13 (9) Cannot be transferred to another car (10) 1 (1 ) No ~roblems ex~erjenced 2G {32) 7 {23) PO) 3 {19) 37 {27) §Totals are diferent to TableD3because of missing information regarding type of seat used. *Includes 3 unspecified types of restraint "Percentage is calculated from the number who reported using these restraints Table clr. Problems reported wHh car seat or restraint for 8 years or older for each type of restraint used at the appropriate age. Special seatl Booster Seatbelt special harness Wheelchair &lor harness* Total§ n=98 (%)** n=2O (%}** n=12 (%)** n=14 (%}** n=144 (%)** Not maintain head control 5 (5) 6 (30) 4 (29) 15 (10) Not sit straight in seat 4 (4) 8 (40) 4 (29) 16 (11 ) Extends/arches out of seat 3 (3) 8 (40) 3 (25) 4 (29) 18 (13) No adjustable positions available 1 (8) 1 (7) 2 (1 ) Child can manoeuvre out of seat 1 (1) (1) Surface of seat too rigid 1 (5) 1 (1) Harness is uncomfortable or ill-fitting 2 (2) 3 (15) 5 (3) Child is too low on seat 1 (1 ) (8) 2 (14) 4 (3) Not comfortable on short trips 1 (1 ) 1 (5) 1 (8) 3 (21) 6 (4) Not comfortable on long trips 5 (5) 7 (35) 1 (8) 3 (21) 16 (11 ) Needed special installation 15 (75) 3 (25) 3 (21 ) 21 (15) Sides of seat prevented easy transfer 01 child into seat 1 (7) 1 (1 ) No ~roblems ex~erjenced 15 {l5} 4 (20) 2 (17} 4 {29) 25 (17) §Tolals are dilerent from Table'J>4.because of missing information regarding type of seat used. *Includes 3 unspecified restraints "Percentage is calculated from the number who reported using these restraints - APPENDIX D - TABLES DI-D4 REPORTED PROBLEMS BY AGE AND DIAGNOSTIC GROUP Table,l)\ . Problems of car restraints used at 0-6 months as reported for the diagnostic groups. Cerebral palsy Muscular dystrophy Spina blflds Spinal muscular atrophy Other disabilities· Total Problems of car restraints o-6mths 113 (%) 'Z1 (%) 75 (%) 10 (%) 44 (%) 269 (%) Not maintain head control 11 (10) 4 (15) 10 (13) 1 (10) 2 (5) 29 (11 ) Not lie/s~ straight in seat 10 (9) 2 (7) 14 (19) 1 (10) 1 (2) 28 (10) Extends/arches out of seat 9 (8) 0 (0) 5 (7) 0 (0) 2 (5) 16 (6) No support for head when child asleep 0 (0) 0 (0) 1 (1 ) 0 (0) 0 (0) 1 (0) Design & fabric made child too hot 1 (1 ) 0 (0) 1 (1) 0 (0) 2 (5) 4 (1) Harness uncomfortable/ilifiHing 0 (0) 0 (0) 1 (1) 0 {OJ 0 (0) 1 (0) Child can manoeuvre out of seat 1 (1 ) 0 {OJ o (0) 0 {OJ 0 {OJ (0) Not comfortable on short trips 7 (6) 1 (4) 9 (12) 0 (0) 3 (7) 20 (7) Not comfortable on long trips 14 (12) 3 (11 ) 13 (17) 1 (10) 6 (14) 37 (14) Needed special installation 6 (5) 1 (4) 6 (8) 0 (0) 3 (7) 16 (6) No adjustable positions 0 {OJ 0 (0) 2 (3) 0 (0) 0 (0) 2 (1 ) Sides of seat prevented easy transfer of child into seat 0 (0) 0 (0) 2 (3) 0 (0) 0 (0) 2 (1 ) No ~roblems ex~erienced 20 {18} 5 {19} 19 {25} 0 (O} 3 (7} 47 (17} *Inciudes acquired brain damage, intellectual disability, other neurological conditions Table'D=<'. Problems of car restraints used at 6 mths - 4 years as reported for the diagnostic groups. Cerebral palsy Muscular dystrophy Spina blflda Spinal muscular atrophy Other disabilities· Total Problems of car restraints 6mth-4yrs 113 (%) 27 (%) 75 (%) 10 (%) 44 (%) 269 (%) Not maintain head control 26 (23) 3 (11 ) 7 (9) 3 (30) 4 (9) 43 (16) Not lie/sit straight in seat 23 (20) 2 (7) 10 (13) 2 (20) 4 (9) 41 (is) Extends/arches out of seat 17 (15) 2 (7) 5 (7) 1 (10) 3 (7) 28 (10) Lumbar back support needed 1 (1 ) 1 (4) 1 (1) 1 (10) 0 (0) 4 (1 ) Harness uncomfortabie/ilifitting 2 (2) 0 (0) 1 (1) 0 (0) 0 (0) 3 (1 ) Child can manoevre out of seat 1 (2) 1 (0) No support for head when child asleel 2 (2) 0 (0) 3 (4) 0 (0) 0 (0) S (2) Child too low on seat 1 (1 ) 0 (0) 1 (1) 0 (0) 0 (0) 2 (1) Not comfortable on short trips 8 (7) 1 (4) 7 (9) 0 (0) 2 (5) 18 (7) Not comfortable on long trips 20 (18) 1 (4) 11 (15) 1 (10) 3 (7) 36 (13) Needed special installation 9 (8) 1 (4) 5 (7) 1 (10) 2 (5) 18 (7) No adjustable positions available 2 (2) 0 {OJ o (0) 0 (0) 1 (2) 3 (1) Sides of seat prevented easy transfer of child into seat 1 (1 ) 0 {OJ o (0) 0 (0) 0 (0) 1 (0) Surface 01 seat too rigid 1 (1 ) 0 (0) 1 (1 ) 0 (0) 0 (0) 2 (1) No problems experienged 19 (17) 8 (30) 15 (20) 1 (10) __ ~1!!L 51 (19} Table])3. Problem s of car restraints used at 4· Blears as re~orted for the diagnostic g rou~s • Cerebral palsy Muscular dystrophy Spina blflda Spinal muscular atrophy Other disabilities· Total Problems of car restraints 4-8lrs 113 (%) 2:1 (%) 75 (%) 10 (%) 44 (%) 269 (%) Not maintain head control 16 (14) 1 (4) 5 (7) 2 (20) 4 (9) 28 (10) Not sit straight in seat 15 (13) 1 (4) 3 (4) 1 (10) 3 (7) 23 (9) Extends/arches out of seat 13 (12) 2 (7) 4 (5) 0 (D) 2 (5) 21 (8) No support for head when child asleep 2 (2) 0 (0) 1 (1) 0 (0) 1 (2) 4 (1) Harness uncomfortable/illfitting 2 (2) 0 (0) 1 (1) 0 (0) 1 (2) 4 (1 ) Child can manoeuvre out of seat 2 (2) 0 (0) 2 (3) 0 (0) 0 {OJ 4 (1 ) Not comfortable on short trips 4 (4) 0 (0) 2 (3) 1 (10) 0 (0) 7 (3) Not comfortable on long trips 15 (13) 3 (11 ) 6 (8) 2 (20) 2 (5) 28 (10) Seat not deep enough 1 (1 ) 0 (0) o (0) 0 (0) 0 (0) 1 (0) Needed special installation 15 (13) 0 (0) (1 ) 0 (0) (2) 17 (6) Child too low 2 (2) 0 (0) 1 (1) 0 (0) 0 (0) 3 (1 ) Sides of seat prevented easy transfer of child into seat 0 (0) 0 (0) 1 (1) 0 (0) 0 (0) 1 (0) Cannot be transferred to another car 1 (i) 0 (0) o (0) 0 (0) 1 (2) 2 (1 ) No ~roblems ex~erienced 15 (13} 7 (26) 14 (19) 2 (20) 6 {14) 44 (16) *Includes acquired brain damage, intellectual disability, other neurological conditions Table 1>1:: Problems of car restraints used at 8 ~ears or olderas reE:0rted for the diagnostic grouE:s • Cerebral palsy Muscular dystrophy Spina blflda Spinal muscular atrophy Other disabilities· Total Problems of car restraints 8 years or older 113 (%) 27 (%) 75 (%) 10 (%) 44 (%) 269 (%) Not maintain head control 10 (9) 0 (0) (1) 3 (30) 3 (7) 17 (6) Not s~ straight in seat 12 (11 ) 0 (0) 2 (3) 2 (20) 1 (2) 17 (6) Extends/arches out of seat 13 (12) 0 (0) 1 (1 ) 0 (0) 4 (9) 18 (7) Child can manoeuvre out of seat 1 (1 ) 0 (0) o (0) 0 (0) 0 (0) 1 (0) No adjustable pos~ions 0 (0) 0 (0) o (0) 2 (20) 0 (0) 2 (1 ) Sides of seat prevented easy transfer of child into seat (1 ) 0 (0) o (0) 0 (0) 0 (0) (0) Child is too low on seat 0 (0) 0 (0) 1 (1 ) 3 (30) 0 (0) 4 (1 ) Not comfortable on short trips 4 (4) 0 (0) o (0) 1 (10) 2 (5) 7 (3) Not comfortable on long trips 11 (10) (4) 1 (1) 2 (20) 3 (7) 18 (7) Needed special installation 17 (15) (4) o {OJ 0 (0) (2) 20 (7) Harness uncomlortable/illfitting 3 (3) 0 (0) 1 (1 ) 0 (0) (2) 5 (2) No ~roblems ex~erienced 13 (12) 4 (15) 4 (5) 2 (20) 3 (7) 26 (10) *Includes acquired brain damage, intellectual disability, other neurological conditions - APPENDIX E - TABLE El SUGGESTIONS FOR IMPROVEMENTS BY DIAGNOSTIC GROUP TableE\. Suggestions tor Improvements made by parents with children In each diagnostic group Spinal Cerebral Muscular Spina Other muscular Total palsy dystrophy bifid a disabilities· atrophy N (%}*" N (%)** N (%)** N (%}** N (%}*" Increase head support 7 (13) 2 (14) 6 (14) 2 (50) (7) 18 (14) Increase seat depth (2) (2) (25) 3 (2) Increase trunk support 7 (13) 2 (14) 6 (14) 2 (50) 2 (14) 19 (15) Provide more adjustable positions 7 (13) (7) 4 (9) (25) 3 (21 ) 16 (13) Improve harness to stop child taking arms ouVmake harness easier to get on child! 6 (11 ) 7 (16) 6 (42) 19 (15) soft straps Make installation cheaper and easier to 2 (4) 2 (14) 4 (3) access for SPC Child to wear soft collar to increase head (1 ) control Make seats less expensive 2 (4) (7) (2) (7) 5 (4) Provide abductor pommel between legs 1 (2) 1 (1 ) Increase selection of larger car seats 4 (8) (2) (7) 6 (5) available for older children Make seats easier for transferring child in 10 (19) 1 (2) 13 (10) and out (7) (7) Tailor made inserts for increase trunk (2) (2) 2 (2) head support More professional assistance needed in prescription and selection process of car 5 (9) 4 (9) (7) 10 (8) restraint More aesthetic colour/look of seat (2) (1 ) Provide swivel front passenger seat for 2 (4) {7} 3 (2) easier transfer in for adolescent children Provide footrest on car seat. 4 (8) 4 (3) All OK 13 (25) 6 (43) 13 (30) (25) 4 (29) 37 (29) Total suggestions 60 7 32 6 23 161 Total making suggestion 53 14 43 4 14 128 *'ncludes acquired brain damage, intellectual disability, other neurological conditions *·Percentage calculated from total making suggestions - APPENDIX F - PARENT SURVEY Thank you for completing this survey. Please return it in the enclosed reply paid envelope by 22/5/95. Please circle response next to the most appropriate answer. Q1) What is your child's age? years months. Q2) Child's sex Male 1 Female~------2 Q3) What is the main disability your child has? cerebral Palsy'------l Muscular Dystrophy'------2 Spina Bifida ------3 Sp inal Muscular Atrophy'------4 Acquired Brain Damage (ie: post accident)------5 stroke near drowning) Intellectual Disability ------6 other neurological conditions:(ie cerebral hypoxia-7 meningitis brain tumour aterio venous malformation aneurysm) other, please specify 8 P.T.O. Q4. Please describe the car seat you used/are using in the corresponding age bracket. If you are not sure of the name of the car seat please refer to the list on next page. Leave blank the age ranges that are older than your child. a) 0 - 6 months b) 6 months - 4 years - c) 4 years - 8 years - d) 8 years and over - P.T.D. CAR SEAT LIST Infant Only Restraint (0-6 months) a) Baby Safety Capsule (Safe N Sound) b) Baby Commuter (Safe N Sound) c) Baby Shuttle (Century) d) Carrytot Safety seat (Klippan) Infant/Toddler Restraint Dual purpose (0-4 years) a) Aprica Convertible (Safe N Sound) b) century Convertible (Century) c) Galaxy 2-in-1 (Safe N Sound) d) Secure 0-4 (Infa Products) Toddler Restraint single Purpose (6 months - 4 yrs) a) Series 3 child Safety Seat (Safe N Sound) b) Mark 10 Child Safety Seat (Safe N Sound) c) Century Recliner (Century) d) Child safety Seat Eclipse (Safe N Sound) child Har,ness (4-8 years) a) Adjustable Child Harness (Klippan) b) Adjustable Child Harness with Gated buckle (Safe N Sound) c) 400 Series Adjustable Child Harness (with locking clip) (Century) d) Model 8H3 Adjustable Child Harness (Hemco Industries) Booster seat (4-8 years) a) Caresse Booster Seat (Vita Pacific) b) Comet Booster Seat (Safe N Sound) c) Cruiser Booster Seat (Safe N Sound) d) Easy Rider Freeway Booster Seat (Klippan) e) Hi-Rider Child Safety Seat (Safe N Sound) f) Kiddy Safe Child Booster Seat (Vita Pacific) g) Optima Child Booster Seat (Klippan) h) Ride'n'See Child Booster Seat (Klippan) i) Travel-Safe Child Booster Seat (Safe N Sound) j) Observer Child Booster SEat (Safe N Sound) k) Solo Child Booster Seat special seat (4-8 years) a) Special Purpose Car Seat (Safe N Sound) b) Columbia Car Seat (U.S.A.) P.T.O. Q5) We want to find out what are the good points and unsuitable points of the car seats you did use or are using now. Please leave blank the ages that are older than you child. o - 6 months a) Please circle the good points of the car seat you are using/did use when your child is now/was 0-6 months old. Child can maintain head control------YES/NO Child lies straight in seat------YES/NO The seat offers a variety of positions (ie reclined) to assist child's sitting position------YES/NO The child is comfortable on short trips (0 - 30 mins)------YES/NO The child is comfortable on long trips (over 30mins)------YES/NO other, please describe b) Please circle the unsuitable points of the car seat you are using/did use when your child is now/was 0-6 months old. The child does not maintain head control------YES/NO The child does not lie straight,------YES/NO The child extends/arches out of the seat YES/NO The child is not comfortable in the seat on short trips (0-30 mins)------YES/NO The child is not comfortable in the seat on' long trips (over ______------YES/NO The car seat needed special installation------YES/NO No problems experienced------YES/NO other, please describe------ P.T.O. Q6) 6 Months - 4 years a) Please circle the good points of the car seat you are using/did use when your child is now/was 6 months - 4 years. Child can maintain head control------YES/NO Child sits up straight in seat------YES/NO The seat offers a variety of positions (ie reclined) to assist child's sitting position------YES/NO The child is comfortable on short trips (0 - 30 mins)------YES/NO The child is comfortable on long trips (over 30 mins)------YES/NO other, please describe------ b) Please circle the unsuitable points of the car seat you are using/did use when your child is now/was 6 months - 4 years old. The child does not maintain head control------YES/NO The child does not sit up straight------YES/NO The child extends/arches out of the seat.------YES/NO The child is not comfortable in the seat on short trips (0-30 mins)------YES/NO The child is not comfortable in the seat on long trips (over 30 mins)------YES/NO The car seat needed special installation ------yES/NO No problems experienced.------YES/NO other, please describe------Q7) 4 years - 8 years a) Please circle the good points of the car seat you are using/did use when your child is now/was 4 - 8 years old. Child can maintain head control------YES/NO Child sits up straight in seat------YES/NO The seat offers a variety of positions (ie reclined) to assist child's sitting position------YES/NO The child is comfortable on short trips (0 - 30 mins)------YES/NO The child is comfortable on long trips (over 30 mins)------YES/NO other, please describe------ b) Please circle the unsuitable points of the car seat you are using/did use when your child is now/was 4-8 years old. The child does not maintain head control------YES/NO The child does not sit up straight------YES/NO The child extends/arches out of the seat------YES/NO The child is not comfortable in the seat on short trips (0-30 mins)------YES/NO The child is not comfortable in the seat on long trips (over 30 mins)------YES/NO The car seat needed special installation------YES/NO No problems experienced.------YES/NO other, please describe------ P.T.O. Q8) 8 years and over a) Please circle the good points of the car seat you are using/did use when you child is now/was 8 years and over. Child can maintain head control------YES/No Child sits up straight in seat,------YES/NO The seat offers a variety of positions (ie reclined) to assist child's sitting position------YES/NO The child is comfortable on short trips (0 - 30 mins)------YES/NO The child is comfortable on long trips (over 30 mins)------YES/NO other, please describe:------ b) Please circle the unsuitable points of the car seat you are using/did use when your child is now/was 8 years and over. The child does not maintain head control------YES/NO The child does not sit up straight~------YES/NO The child extends/arches out of the seat------YES/NO The child is not comfortable in the seat on short trips (0-30 mins)------YES/NO The child is not comfortable in the seat on long trips (over 30 mins)------YES/NO The car seat needed special installation------YES/NO No problems experienced ------YES/NO Other, please describe~------ P.T.C. Q9) Did you receive any help when selecting or obtaining an appropriate car seat? ------YES/NO If yes, please describe the help you received. If no, please go to Question 10. Ql0) Do you have any suggestions as to how your car seat could be made more suitable for you and your child's needs? Thank You. Lisa Vale OCCUPATIONAL THERAPIST ROYAL CHILDREN'S HOSPITAL Telephone: (03) 345 5402 950r-31 - APPENDIX G- TYPE OF CAR RESTRAINTS USED - Type of _at uNCI 0-6 month. N "- Bassinet 58 (46.7) Baby safety capsula 85 (SO.4) Aprlca convartble 1 (0.8) Century convartbla 1 (0.8) GaJaxy21n 1 2 (1.6) Series 3 child safay seat 1 (0.8) Not applicable 7 Missing 133 Total 289 Smtha -4 yaera N % Bassinet 1 (0.1) Aprica convertille 1 (0.7) Century convertilia 3 (2.1) Galaxy 2 In 1 2 (1.4) Secura 0-4 1 (0.1) Series 3 child safay seat 63 (45.0) Mark 10 child safety seat 54 (38.6) Century recliner 1 (0.7) Adjustable child harness 1 (0.1) Easy rider freeway booster 1 (0.7) Hi-rider child safety seat 1 (0.7) Special purpose car seat 1 (0.7) Other 7 (5.0) Other type of booster 2 (1.4) Not applicable 1 Missing 129 Total 268 . 4yr ... a yr. N % Century convertble 2 (1.4) Secure 0-4 1 (0.7) Series 3 child safay seat 9 (6.5) Mark 10 child safety seat 13 (9.4) Adjustable child hamess 1 (0.7) Adjustable child harness with buckle 10 (7.2) 400 Series Adjustable child harness 1 (0.7) Model 8h3 adjustables child harness 1 (0.7) cal'8SS8 booster seat 1 (0.7) Comet booster seat 2 (1.4) Cruiser booster seat 3 (2.2) HI-rider child safety seat 19 (13.8) Kiddy safe child booster 3 (2.2) Rlda'n'see child booster 1 (0.7) Travel safe child booster 6 (4.3) Observer child booster 1 (0.7) Solo child booster 4 (2.9) Special purpose car seat 10 (7.2) Normal car seat belt 16 (11.6) Other 6 (4.3) Other type of booster 28 (20.3) Not applicable 16 Missing 115 Total 2EI9 8 year. and older Galaxy 21n 1 1 (0.5) Adjustable child harness with buckle 1 (0.5) Easy rider freeway booster 1 (0.5) Hi-rider child safety seat 3 (1.5) Kiddy safe child booster 1 (0.5) Travel safe child booster 1 (0.5) Special purpose car seat 17 (8.3) Wheelchair 32 (15.7) Normal car seat belt 96 (48.0) Other 3 (1.5) Spacial harness 3 (1.5) Other type of booster 4 (2.0) Not applicable 39 Missing 65 Total 269 - ~ .- . -- -... ---~.------...... 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