neuroimpairment, activity limitation, and participation ... · d poon, m phil, pdpt correspondence...

342 Hong Kong Med J Vol 11 No 5 October 2005

ORIGINAL ARTICLE

Key words:Activities of daily living;Cerebral palsy;Developmental disabilities;Disability evaluation;Learning disorders

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Hong Kong Med J 2005;11:342-50

Neuroimpairment, activitylimitation, and participationrestriction among children withcerebral palsy in Hong Kong

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Central Kowloon Child Assessment Centre,Child Assessment Service, Department ofHealth, 147L Argyle Street, Hong KongHSS Chan, MRCP, FHKAM (Paediatrics)

PHB Lau, MCSP

KH Fong, PDOT

CCC Lam, FRCP, FHKAM (Paediatrics)

Department of Rehabilitation Sciences, TheHong Kong Polytechnic University,Hunghom, Hong KongD Poon, M Phil, PDPT

Correspondence to: Dr HSS Chan(e-mail: [email protected])

HSS Chan �� PHB Lau �� KH Fong ��

D Poon �� CCC Lam ��

Objectives. To study children with cerebral palsy in Hong Kong, theirneuroimpairment, activity limitation, and participation restriction insociety. Parents’ opinion on current medical and rehabilitation serviceswas also sought.Design. Systematic survey using questionnaires.Setting. Four associations in Hong Kong: Child Assessment Service, HongKong Association for Parents of Children with Physical Disabilities,Association of Parents of the Severely Mentally Handicapped, and HongKong Physically Handicapped and Able-Bodied Association.Participants. Parents of children with cerebral palsy.Main outcome measures. Neuroimpairment, activity limitation, andparticipation restriction.Results. Information from 181 children with cerebral palsy was analysed.Among them, 56% were boys. The mean age was 7 years 6 months(standard deviation, 3 years 11 months). The most common diagnostictype was spastic cerebral palsy. Co-morbidities in children with cerebralpalsy were common. Limitation in daily activities including mobility andself-care tasks was considerable and this posed great stress to parentswhen taking care of their children. Children’s participation in both socialand leisure activities was regarded as a low priority. A high percentage(70%) of parents reported difficulty in travelling. The reasons involvedproblems in transportation, building access (entry and exit), and attitudesof the general public. These environmental factors restricted the socialparticipation of the children and their families. Over 75% of parents weresatisfied with the current medical and rehabilitation services.Conclusions. Children with cerebral palsy have multiple and complexneeds. The findings of this study may serve as a reference for parents,service providers, and policy makers to work in partnership to achieve amore comprehensive health-care service for children with cerebral palsyand to facilitate better integration into the community.

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Hong Kong Med J Vol 11 No 5 October 2005 343

Children with cerebral palsy in Hong Kong

Introduction

Cerebral palsy is a complex disease, and the affectedchildren need multiple and variable care. From June2001 to June 2002, the Child Assessment Service(CAS) in conjunction with the Hong Kong Associa-tion for Parents of Children with Physical Disabilities(HKAPCPD) conducted a parental survey that focusedon children with cerebral palsy. It aimed to studyneuroimpairment, activity limitation, and participationrestriction of these children. Parents’ opinion on localservices was also sought.

Methods

A questionnaire was completed by parents of childrenwith cerebral palsy. Information was sought in fiveareas: (a) basic epidemiological data; (b) level ofneuroimpairment, activity limitation, and societalparticipation; (c) need for rehabilitation equipment andhome modification; (d) parents’ opinion on currentmedical and rehabilitation services; and (e) parents’major concerns (Appendix). Fifteen parents who werenot involved in formulating the survey questionscompleted the questionnaire as a pilot study. Arevised questionnaire was produced based on theirfeedback.

Questionnaires were sent out to the parents ofchildren with physical disabilities. The parentswere recruited from CAS, HKAPCPD, the Asso-ciation of Parents of the Severely Mentally Handi-capped (APSMH), and the Hong Kong Physic-ally Handicapped and Able-Bodied Association(PHAB).

Statistical analysisChi squared test and Fisher-Freeman-Haltonexact test were used to analyse the questionnairesusing the Statistical Package for the Social Sciences(Windows version 10.0; SPSS Inc, Chicago [IL], US).The Department of Rehabilitation Sciences of theHong Kong Polytechnic University supported thedata analysis.

Results

A total of 420 questionnaires were sent out to the par-ents of children with physical disabilities. Two hun-dred and ninety-six questionnaires returned, with theresponse rate of 70%. A total of 181 parents identifiedtheir children as having cerebral palsy.

NeuroimpairmentAmong 181 children, 56% were boys and 91% wereyounger than 12 years old. The most common diag-nostic type was spastic cerebral palsy, but most par-ents were unaware of the topographical involvement.Diagnostic type of cerebral palsy was unknown in 11%.The two most quoted causes of cerebral palsy wereprematurity and asphyxia (Table 1).

The most common associated medical problem wasepilepsy (32%) followed by oromotor and swallowingproblems (12%), constipation (11%), urinary or bowelsymptoms (11%), and respiratory problems (10%).Developmental problems were also common: 48%were mentally retarded or had global developmentaldelay and 20% were non-verbal communicators. Visualproblems were present in 63% of children. Behaviouraldisorders and hearing impairment were present in 15%and 13%, respectively. Only six of the 36 non-verbalchildren used a low-tech augmentative alternativecommunication device such as communication booksor boards. Hand signs were used by five children andthe others relied on simple means such as gestures,vocalisation, or crying. No child used a high-tech aug-mentative alternative communication device at home.

Activity limitationMobilityChildren’s mobility was rated according to four func-tional levels: independent walker, assisted walker, in-dependent wheelchair user, and assisted wheelchairuser. Most (64%) of the children were walkers indoors(42% independent, 22% assisted). The percentagedropped to 51% (34% independent, 17% assisted)outdoors. This was associated with an 11% increasein assisted wheelchair users (from 32% to 43%). Sig-

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Chan et al


nificant differences were found between intellectuallevel and walking ability for both indoor (χ2=42.93,df=4, P<0.001) and outdoor (χ2=49.18, df=4, P<0.001)environment. A high percentage (indoor, 65%; outdoor,64%) of assisted wheelchair users functioned at amoderate-to-severe level of intellectual disability. Onthe contrary, a high percentage (indoor, 70%; outdoor,73%) of independent walkers had normal intelligence(Table 2). Only two independent wheelchair users useda powered wheelchair and had normal intelligence. Nochild could use a self-propelled manual wheelchair.

Self-care activitiesSelf-dressing was considered a more complex task thanself-feeding. Sixty percent of children needed help withdressing, whereas 39% needed help with feeding. Only28% of children could dress or undress themselvesalone or with minimal assistance, whereas 46% couldeat with minimal or no assistance.

Societal participationEighty-six percent of children participated in commonleisure activities such as going to restaurants, shop-ping malls, and playgrounds. Only 54% of childrenparticipated in recreational activities such as attend-ing public libraries, swimming pools, or youth centres.Seventy percent of parents had difficulty in goingoutdoors with their children because of problemswith transportation (47%), poor access to buildings andrailway or subway stations due to entry/exit problems(28%), and discrimination by others (23%). Parentsfound it difficult to get buggies or wheelchairs ontopublic vehicles, such as buses, minivans, and taxis,especially those not equipped with fixed ramp orparking space for wheelchair. Rehabus service waslimited and required booking months in advance.Entry to and exit from Mass Transit Railway stationsand buildings that had only escalators or stairs werethe main access problem. Society was perceived tobe ‘non-accepting’ and discriminatory by 23% ofparents (Table 3).

Need of rehabilitation equipment andenvironmental modificationEighty-five percent of children required rehabilitationequipment including leg braces (58%), standing frame(32%), special wooden chair (31%), leg gaiter (31%),arm gaiter (28%), buggy (25%), arm brace (16%),walking frame (11%), manual wheelchair (10%),spinal brace (6%), crutches (5%), and others (9%).Structural modification to the home to facilitate inde-pendence in daily living activities was carried outby 29% of patents. Such changes ranged from minoradditions such as adding hand rails (22%) and ramps

Table 1. Neuroimpairment of children with cerebralpalsy

No. ofchildren (%)

Sex*QMale 56QFemale 43Age (years)*Q0-2 27Q3-4 19Q5-6 18Q7-8 19Q9-10 15Q11-12 13Q13-14 13Q15-16 12Q17-18 21Q19-22 12Type of cerebral palsyQSpastic cerebral palsy 77QDyskinetic cerebral palsy 26QSpastic dyskinetic cerebral palsy 24QAtaxic cerebral palsy 22QNon-specific cerebral palsy 11Possible aetiologyQPrematurity 35QAsphyxia 24QHead injury 29QCongenital brain anomalies 27QCentral nervous system infection 25QUnknown 18QOthers 22Cognitive performanceQDevelopmental delay 10QLimited intelligence 28QMild mental retardation 29QModerate mental retardation 12QSevere or profound mental retardation 17QNormal 37QUnknown 37Additional health or developmental problems†

QEpilepsy 32QOromotor and swallowing problem 12QConstipation 11QRespiratory problem 10QUrinary incontinence 25QBowel incontinence 25QUrinary retention 21QVisual problems 63QHearing impairment 13QCognitive impairment 63QBehavioural disorder 15QNon-verbal communication 20Visual performance†

QAmblyopia 13QSquint 29QRefractive error 34QBlind 23QUndergone squint surgery 29QWearing corrective spectacles 28QNormal 38Hearing performance†

QHearing impairment (different grade) 13QOn hearing aids 22QNormal 87Communication performance†‡

QVerbal communicator 77QNon-verbal communicator 20QUse of augmentative alternative 23Qcommunication deviceQUse of hand sign 13

* Data were missing for one questionnaire† Respondents could choose more than one item‡ Data were missing for three questionnaires



(1%), to major renovations such as changing bathtubto shower (11%), changing toilet setting (7%), and wallremoval (2%).

ServicesOver 75% of parents were satisfied or extremelysatisfied with the local medical and rehabilitationservices (Table 4a). The most popular subspecialtyclinic was paediatric neurology, followed by paediat-ric orthopaedics, ophthalmology, and the generalpaediatrics clinic. Thirty-two percent of childrenneeded to attend three or more clinics for follow-up,whereas 39% attended two or more hospitals.Nonetheless, 7% of children received no follow-upmedical care. Multidisciplinary joint clinics andoutreach school clinics were rarely mentioned, whereas92% of children had attended the CAS. Physiotherapywas the most commonly accessed therapy, followedby occupational therapy and speech therapy. In pri-mary school–aged children, 75% attended special-needs schools, with the majority in schools for thephysically handicapped and schools for children withsevere mental retardation. Only half of the 20% ofchildren attending mainstream schools were supportedby inclusive education, peripatetic, or remedial ser-vices (Table 4b).

A need for improvement in subspecialty clinicswas identified by one third of the parents. Several

Table 3. Societal participation

Yes No No entry(%) (%) (%)

Participation in leisure 86 17 17activitiesQShopping mall 81QChinese restaurant 77QPlayground 76QFast food restaurant 73QGame centre 61QCountryside 59Participation in recreational 54 35 11activitiesQSwimming pool 44QLibrary 32QCommunity centre 15QPrivate organisation/club 15QYouth centre 17Difficulty in participating 70 22 18outdoor activitiesQSlightly difficult 31QDifficult 18QExtremely difficult 17QNo entry 34

Reason of difficulty inparticipating in outdoor activitiesQTransportation problem 47%QEntry/exit problem 28%QPublic acceptance 23%QOthers 11%Societal acceptanceQExtremely accept 16%QAccept 61%QUnaccept 22%QExtremely unaccept 11%QNo entry 10%

Table 4a. Parents’ opinion on the services

Service Extremely Satisfied Dissatisfied Extremely No entrysatisfied (%) (%) dissatisfied (%)

(%) (%)

Preschool education (n=181) 13 63 13 2 19School-aged education (n=105) 11 72 19 1 17Physiotherapy (n=166) 18 75 12 0 15Occupational therapy (n=154) 17 67 15 1 10Speech therapy (n=93) 14 71 14 2 19Subspecialty clinic (n=181) 18 72 10 1 19Child Assessment Service (n=167) 18 76 10 1 15Rehabilitation equipment (n=154) 14 55 15 2 24

Table 2. Comparison of intelligence level with indoor/outdoor walking ability*

Intelligence level Indoor walking ability Outdoor walking abilityIndependent Assisted Wheelchair Independent Assisted Wheelchair

walking walking using† walking walking using†

No. (%) No. (%) No. (%) No. (%) No. (%) No. (%)

Normal intelligence 46 (69.7) 12 (34.3) 29 (19.6) 38 (73.1) 15 (57.7) 11 (17.2)Limited intelligence and mild 14 (21.1) 29 (25.7) 27 (15.2) 11 (21.2) 24 (15.4) 12 (18.8)mental retardationModerate-to-severe mental 26 (9.1)2 14 (40.0) 30 (65.2) 23 (5.8)2 27 (26.9) 41 (64.1)retardation

* Significant differences were noted between intelligence level and walking ability indoors (χ2=42.93, df=4, P<0.001) and outdoors(χ2=49.18, df=4, P<0.001) [Fisher-Freeman-Halton test]

† It includes both independent wheelchair users and assisted wheelchair users

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suggestions were made: (1) better continuity of care:the child should be followed up by a dedicated casedoctor who knows the child and the family well.(2) Better access to existing services: more flexibilityin arranging appointments, shorter waiting listand waiting time, longer consultation time. (3) Morerespectful and supportive care: discourage unfriendly

attitudes and encourage professionals to respectparents’ and children’s concerns when deciding on amanagement plan. (4) Better coordinated care: arrangemore integrated multidisciplinary joint clinics andschool outreach clinics to limit the number of visitsto different clinics and hospitals.

Parents wished to have more frequent follow-upfor their children and a longer time allocated formeetings with staff to discuss findings of theassessment and rehabilitation plan, as well as tohave a more detailed assessment summary. Parentsalso suggested longer and more frequent therapysession, with a higher therapist-to-child ratio. Thecost of prosthetic and orthotic equipment was con-sidered high by most families. Parents suggestedthat orthoses should be more durable, weigh less, fitwell, need less time to manufacture, and need lessre-adjustment. They also suggested that more readilyavailable rehabilitation equipment resource librariesshould be set up (Table 5).

Table 5. Suggested area for improvement

Areas that need further improvement Yes No(%) (%)

Subspecialty clinic (n=181) 33 47QFollow-up frequency 12QFollow-up mode 33QLocation 19QOthers 30Child Assessment Service (n=167) 23 57QFollow-up frequency 41QFollow-up mode 26QLocation 19QOthers 24Physiotherapy (n=166) 38 45QQueueing time 20QTreatment environment 10QEquipment 14QTreatment time and frequency 44QOthers 12Occupational therapy (n=154) 38 40QQueueing time 20QTreatment environment 10QEquipment 17QTreatment time and frequency 47QOthers 6Speech therapy (n=93) 29 46QQueueing time 39QTreatment environment 10QEquipment 17QTreatment time and frequency 43QOthers 11Rehabilitation equipment (n=154) 32 38QWaiting time 26QDurability 18QCost 34QInformation availability 13QOthers 19

Table 4b. Attendance of educational, medical, andrehabilitation services

Percent

Subspecialty clinic follow-upQPaediatric neurology 56QPaediatric orthopaedics 37QOphthalmology 37QGeneral paediatrics 35QNeurosurgical 16QPaediatric surgery 28QEar, nose and throat 27QSchool clinic 26QMultidisciplinary joint clinic 25QChild psychiatry 21

Child Assessment ServiceQAttended 92QNever attended 28

Therapy trainingQPhysiotherapy 92QOccupational therapy 85QSpeech therapy 51

No. of subspecialty clinic attended forfollow-upQ0 27Q1 25Q2 35Q3 19Q4 11Q5 11Q6 11

No. of hospitals attended for follow-up*Q0 27Q1 52Q2 32Q3 26Q4 21

Equipment and home modificationQNeed rehabilitation equipment 85QNeed home modification 29QQMajor modification 20QQMinor modification 23

Current educational serviceQPreschool education service (EETC, SCCC, 42QICCC, NKG, NNY)†

QRegular primary school 14QQWith support 28QSpecial primary school 44QQFor physical handicapped 20QQFor mild mental retardation 23QQFor moderate mental retardation 23QQFor severe mental retardation 14QQOther special school 14

* Data were missing for four questionnaires† EETC denotes early education and training centre, SCCC special

childcare centre, ICCC integrated childcare centre, NKG normalkindergarten, and NNY normal nursery



Parents’ major concernOver 70% of parents rated their children’s self-careactivities and mobility, along with therapy trainingand medical care, as high priorities. Over 45% of theseparents rated independence in self-care and mobilityas the most important concerns. Social participationwas rated as important by incredibly few parents(<5%), and 21.7% rated social participation and39.2% rated future employment as a low-priorityconcern (Table 6).

Discussion

Cerebral palsy is the most common physical disabilityin children.1 It is a neurodevelopmental conditionand affects many aspects of a child and the family’sdaily life. The World Health Organization in-ternational classification of functioning, disabilityand health2 (ICF) [Fig] has moved cerebral palsyaway from a ‘consequence of disease’ classifica-tion3 to a ‘health focus’ classification. In contrastto the traditional view that disability affects onlythe individual patient, the new model recognisesthat disability is a social construction and involvesinteraction of the affected person with the communityor society. In addition, it highlights participation asan important outcome of health.4 In this survey, theICF framework was adopted to study childrenwith cerebral palsy, their neuroimpairment, and todetermine to what extent this limited their dailyactivities and restricted their participation in familyand community life. Environmental factors werealso analysed.

The most common diagnostic type was spasticcerebral palsy. Parents who were unknowledgeable

with regard to the diagnostic type of cerebral palsymight be due to inadequate medical information orthe difficulty in diagnosing cerebral palsy. Thepattern of neuromotor findings change during the firstfew years of life and also vary with different clinicaltypes and severity. Muscle tone may evolve fromhypotonia to hypertonia as the child grows and theclinical differentiation between dystonia and spasti-city is sometimes complicated. The diagnostic type ofcerebral palsy is considered stable only after thechild reaches 5 or 6 years of age.

A Canadian study reported that 75% of childrenwith cerebral palsy had a learning disorder or devel-opmental delay, 41.6% had communication andspeech delay, 29% had visual impairment, 10% hadhearing impairment, 14% had behavioural disordersand 27% had epilepsy.5 This study confirmed theirfindings that cerebral palsy usually came withco-morbidities. Thus, recognising and managing themany important co-morbidities in cerebral palsy isas important as treating the motor disabilities.1,4

Learning disability is highly predictive of restric-tion in mobility.6 In this study, there was a statisticallysignificant correlation between intellectual level andwalking ability (indoor and outdoor). Other factorssuch as the severity and type of cerebral palsy, paren-tal coping, and environmental obstacles also affecteda child’s motor performance. Activity limitation wasfound to be strongly associated with participationrestriction.6 More than half of the children in thisstudy had limited mobility and required assistance touse public transport. There was a strong correlationbetween this mobility limitation and the high percent-age (70%) of parents who expressed difficulty goingoutdoors with their children. The problem was

Health condition(disorder or disease)

Body structureand function

ParticipationActivity

Environmentalfactors

Personalfactors

Fig. The international classification of functioning,disability and health model

Table 6. Comparison of parents’ concern and priority*

Parents’ concern PriorityHigh Medium Low

No. (%) No. (%) No. (%)

Independence in 116 (45.8) 42 (18.5) 15 (3.5)1self-care activitiesand mobilityMedical follow-up 174 (29.2) 63 (27.8) 22 (15.4)and therapy trainingEmotional and 128 (11.1) 39 (17.2) 18 (5.6)1behavioural stabilityAcademic 120 (7.9)1 37 (16.3) 21 (14.7)performanceSocial participation 111 (4.3)1 35 (15.4) 31 (21.7)and leisureEmployment 114 (1.6)1 11 (4.8)1 56 (39.2)

* Parents’ concerns are shown to be associated with priority(χ2=247.34, df=10, P<0.001)

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compounded by major environmental adversefactors such as inaccessible transport and attitudeof the general public.

The use of an alternative augmentative communi-cation device or power mobility was rare in this studypopulation. Most children relied on conventionalrehabilitation therapy that aimed to correct the primaryimpairment and promote more ‘normal’ movementpatterns. Recently the goals of rehabilitation hasshifted from eliminating deficits to enhancingfunction across all performance domains.7 Adaptationof the task or environmental modification can helpachieve functional independence and good qualityof life, despite physical or mental impairment.4 Moreliberal use of assistive technology may also enhancea child’s independence and social participation. Earlyintroduction of power mobility to preschool-agechildren has been shown to have a great positiveimpact on their social, language, and play skills.8

Early introduction of augmentative alternative com-munication for children with verbal expressive diffi-culties can help promote the development of language.This dispells the myth that augmentative alternativecommunication devices inhibit normal languagedevelopment.1 Technology is constantly advancingwith an increasing number of devices becomingavailable to assist disabled children and adults withactivities of daily living. The use of such technologyis an important aspect of rehabilitation that can aidfamily participation in social activities. Nonetheless,as devices become more sophisticated, special train-ing may be needed to use them. Their availability mayalso be limited if costs are prohibitively high.

Parents identified four main concerns for theirchildren: self-care ability, mobility, therapy, and medi-cal care. Many children needed supervision orassistance to perform everyday activities such asdressing and feeding, and many parents relied ondaily therapy and treatment to enable their childrento achieve simple daily tasks. Participation bychildren in leisure and social activities that wouldenhance social development were, surprisingly, con-sidered unimportant by many parents. This mayhave been due to time constraints of the parents or alack of awareness of the importance of socialdevelopment. The possibility of future employmentwas not an immediate concern as the children wereyoung, but may become a concern as they grow up.

The most commonly accessed services werephysiotherapy, occupational therapy, prostheticsand orthotics service, and visits to paediatricians.

Most parents were satisfied with the local medicaland rehabilitation services. The important role ofboth structural elements (accessibility to existingservices) and process elements (presence of respect-ful and supportive care, continuity and coordinationof care) in parents’ satisfaction has been previouslyidentified.9 In contrast to what most believe, theoutcome of care is not as important as satisfactoryservice provision. In this survey, parents identifieda need for improvement in both structural elements(shorter waiting list and time, longer consultationtime, more intensive training, more frequent follow-up, higher therapist-to-child ratio, and better qualityof rehabilitation equipment) and process elements(more friendly attitude and having a dedicated casedoctor who is familiar with the child and the family)of services. Parents requested more multidisciplinaryjoint clinics and school outreach clinics to decreasethe need to travel. Greater parental satisfaction withcare has been shown to be associated with a compre-hensive and integrated programme of medical andpsychosocial services that encourages family involve-ment and partnership with service providers in mak-ing decisions and offers coordination of services, healtheducation, and support.10

There are several limitations in this study. First,children with milder forms of cerebral palsy mightnot be well represented. Usually children with moresevere functional limitation would attend medicaland rehabilitation services more consistently. Second,the information was based mainly on preadolescentchildren. There was little information on the healthand functional status of adolescents, or parents’ satis-faction regarding current services for adolescentsand adults. Third, this study was carried out from aconvenient sample rather than a population-basedstudy. The findings may not represent all childrenwith cerebral palsy and their families in Hong Kong.It should nonetheless give an indication of the cur-rent situation as most children with cerebral palsyare referred to CAS for further evaluation.

Conclusions

The ultimate goal of rehabilitation is to maximisechildren’s potential and to assist them to participatefully in school, home, and community. Level ofparticipation has a tremendous impact on qualityof life and is a vital part of childhood development.11

Participation enables children to understand society’sexpectations and to acquire the physical and socialcompetencies needed to function and flourish in theirhome and community.12 Satisfaction with participation



is an important predictor of life satisfaction.13 It istherefore important for parents, service providers,and policy makers to realise the ultimate goal ofrehabilitation: to assist children to participate fully intheir family and community, and to understand themajor factors that promote or limit such participation.A child’s participation is affected by his/her own,family, and environment factors.11 Positive child fac-tors include their feelings of competence (eg inathletics, academics, etc) and their functioning inphysical, cognitive, communicative, emotional,behavioural, and social aspects. Positive family fac-tors include the presence of supportive family demo-graphic variables (eg high income and education), goodfamily functioning with better parent well-being,and family preferences related to recreation and skill-building activities. Environmental factors includethe presence of supportive physical and institutionalenvironments (such as absence of restrictions physi-cally and socially) and the presence of supportiverelationships with other people. Environmental factorsand family factors are more important in promotingchildren’s participation than the characteristics ofchildren themselves.14 This study revealed thatphysical environmental barriers combined with lackof parental encouragement to participate sociallywere the two major adverse environmental factorsthat limited children’s participation.

The following findings may be helpful to parents:1. Although the needs of an individual child with

cerebral palsy vary, the complexity of their needsis something that many families have in common.Joining a parent support group allows parents toshare information, to interact with others whohave the same experiences and family stresses,and to become involved in advocacy work toimprove services.15

2. Children’s needs are often long-term and complex.Families should be empowered with adequateinformation to plan for their children’s continu-ous needs.

3. Parents should not place too much emphasison their children achieving normal function.Accommodative strategies and the use of assistivetechnology should be encouraged to enhance theirsocial participation and quality of life.

For service providers and policy makers, thefollowing may be helpful:1. The information obtained by this survey may

assist in developing programmes that addressgaps in the current service delivery.

2. Children with cerebral palsy continue to

experience physical problems with access.Government policy and legislation must ensurea more wheelchair-friendly environment in allpublic transportation, stations, buildings, facilities,and other public areas.

3. Children with cerebral palsy receive services frommany different organisations such as educationalinstitute, hospitals, child assessment services, andout-patient training centres. Such services shouldbe coordinated.

4. Parents’ opinion on services should be taken intoaccount to ensure delivery of family-orientedservices.

5. More resources should be allocated to supplyaugmentative interventions such as mobilityaids, alternative communication devices, andrelated technical tools. These enhance children’sfunctional performance and thus participation inthe community.

6. More education should be provided to raisepublic awareness and acceptance of people withdifferent kinds of disabilities.

7. Professionals should empower parents withnecessary skills and teach the importance ofearly social participation and environmental modi-fication to enhance the overall functioning andquality of life for children.

This is the first study of children with cerebralpalsy in Hong Kong that has used the ICF framework2

to study neuroimpairment, activity limitation, andparticipation restriction, as well as how these elementsrelate to each other and affect parental priorities.Parents’ opinion on current local services has alsobeen analysed. The information from this studyprovides relevant reference for parents, serviceproviders, and policy makers in advocating im-provements in services for children with cerebralpalsy.16 As cerebral palsy cannot be cured, the WorldHealth Organization’s model focuses on ‘functionand health’. It offers an important framework toguide modern thinking about goals of rehabilitation.1, 2

Parental values and goals are important componentsof a child’s rehabilitation plan.17 Parents andservice providers should work in partnership built onmutual respect to create a better environment forchildren with cerebral palsy in Hong Kong.

Appendix

Additional material related to this article can be foundon the HKMJ website. Please go to <http://www.hkmj.org.hk>, search for the appropriate article, and clickon Full Article in PDF following the title.

Chan et al


References

1. Rosenbaum P. Cerebral palsy: what parents and doctorswant to know. BMJ 2003;326:970-4.

2. World Health Organization: International classification offunctioning, disability and health. Geneva: World HealthOrganization; 2001.

3. World Health Organization: International classification ofimpairments, disabilities and handicaps. Geneva: WorldHealth Organization; 1980.

4. Majnemer A, Mazer B. New directions in the outcomeevaluation of children with cerebral palsy. Semin PediatrNeurol 2004;11:11-7.

5. King S, Law M, King G, Kertoy M, Hurley P, RosenbaumP. Children with disabilities in Ontario: a profile of chil-dren’s services. Part 1: Children, families and services.Ontario: CanChild Centre for Childhood Disability Research;2000.

6. Beckung E, Hagberg G. Neuroimpairments, activitylimitations, and participation restrictions in children withcerebral palsy. Dev Med Child Neurol 2002;44:309-16.

7. Graves P. Therapy methods for cerebral palsy. J PaediatrChild Health 1995;31:24-8.

8. Butler C. Augmentative mobility: why do it? Phys MedRehabil Clin N Am 1991;2:801-16.

9. King G, Cathers T, King S, Rosenbaum P. What makesparents satisfied and dissatisfied with rehabilitation servicesfor their children? Child Health Care 2001;30:111-34.

10. Stein RE, Jessop DJ. Does pediatric home care make adifference for children with chronic illness? Findings fromthe Pediatric Ambulatory Care Treatment Study. Pediatrics1984;73:845-53.

11. King G, Law M, King S, et al. The participation of childrenwith physical disabilities. Ontario: CanChild Centre forChildhood Disability Research; 1999.

12. Brown M, Gordon WA. Impact of impairment on activitypatterns of children. Ach Phys Med Rehabil 1987;68:828-32.

13. Kinney VB, Coyle CP. Predicting life satisfaction amongadults with physical disabilities. Arch Phys Med Rehabil1992;73:863-9.

14. Jackson EL, Burton TL. Understanding leisure and recreation:mapping the past, charting the future. State College, PA:Venture Publishing Inc; 1989.

15. Law M, Stewart D, King G, King S, Terry L, Chiu J. Manyroads to one place: the effects of parent support groupsfor parents of children with special needs. Phys OccupTher Pediatr 2001;21:2-3.

16. Child Assessment Service. Press conference on “ParentSurvey on Children with Cerebral Palsy”. Hong Kong:Brainchild; 2003:24-6.

17. King S, Kertoy M, King G, Rosenbaum P, Hurley P, Law M.Children with disabilities in Ontario: a profile of children’sservices. Part 2: Perceptions about family-centred servicedelivery for children with disabilities. Ontario: CanChildCentre for Childhood Disability Research; 2000.

Hong Kong Med J Vol 11 No 5 October 2005—Appendix i


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��|||�� !"#$%&'OK �� !"

�� L�� ! �� !" �� !"L�� ! E�� L�� !"F �� =E��||||||||||||||||||||=F

PK �� !"#$%& E�� EeÉãáéäÉÖá~F �� EaáéäÉÖá~F �� Enì~ÇêáéäÉÖá~F �� EqêáéäÉÖá~F=F�� L�� !"#$%�� !"#$%&'()*+�� !"#$%&�� !"#$%=Eaja�aìÅÜÉååÉ=jìëÅìä~ê=aóëíêçéÜóF�� !"#$%=Epj^�péáå~ä=jìëÅìä~ê=^íêçéÜóF�� !�� ||||||||||||||||||||||||||||||||||||||||||||||||

QK �� !" �� !" �� ! �� ! �� !�� ! �� ||||||||||||||||||||||||||||||||||||||||||||||||||||||

RK �� =E�� !"#$F�=��L��L��=E�� !"#$F ��

SK �� =E�� !"#$ �� N�� ! �� O�� !F�� !"#$%�� ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||

TK �� !" �� !" �� !" �� !" �� !" �� !UK �� !"#=E�� !"# �� !" �� !"#$ �� !"F

�� !"#$=E�� !||||||||||||||||||||||||||||||=FVK �� !" �� !"#=E�� ! �� F

�� !"#$=E�� !||||||||||||||||||||||||||||||=FNMK �� !=E�√ �� !"F

�� !" �� !"�� !"#$%&'()* �� !"#$%&'()*�� !"#$ �� !"#$�� !"#$%&'()*+, �� !"#$%&'()*+,�� !"#$%&'()*+,-#$�� !"# ��

E�� !||||||||||||||||||||||||||||||||||||||||=F�� !"#$%&'()=E�� !"�#!$%&'(F�� !=E=�� !|||||||||||||||||||||||||||||||=F

�� !=E=�� !|||||||||||||||||||||||||||||||=FNNK �� !"�� !"# �� !"#$%&'()

�� !"#$%&'() �� !"#$%&'(NOK �� !"�� !"L�� !"

�� !"#$%&'(L�� !"�� !"#$%&'(L�� !"�� !"#$%&'L�� !"

NPK �� !"�� L�� L�� !E�� !|||||||||||||||||||||||||=F�� !"#$E�� !||||||||||||||||||||||||||=F�� !"�� !"E�� !"#$%&F�� !"�� !"E�� !"#$%&'()*+,-!F�� |||||||||||||||||||||||||||||||||||||||||||

ffK �� !=E�� !"√��F

NK �� !=E�� !"#$%F�� !"#E�� |||||||||||||=F �� !"E�� |||||||||||||||=F �� !"E�� |||||||||||||||=F�� !E�� |||||||||||||||||=F �� E�� |||||||||||||||||||=F �� !"E�� |||||||||||||||=F�� E�� |||||||||||||||||||=F �� !"#E�� |||||||||||||=F�� !"E�� !"#$%|||||||||||||||||||||||||||||||||||||=F�� !"E�� !"#$%|||||||||||||||||||||||||||||||||||||=F�� !"|||||||||||||||||||||||||||||||||||||||||||||||||||||||�� !"#$%&'()*+,%& �� ! �� !"#�� !"#$%&'()*+��

Chan et al

ii Hong Kong Med J Vol 11 No 5 October 2005—Appendix

��=�� !"|||||||||||||||||||||||||||�� !"|||||||||||||||||||||||||||�� !"|||||||||||||||||||||||||||��|||||||||||||||||||||||||||||||||

�� !"||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||OK �� !

�� !"#$%&'()*+,-./0123 ��E�� !P�F�� !"#$%&'()*+,-./012|||||||||||�� !"#$%&'()*+,-./0123|||||||||�� !"#$%&'()�� !" �� ! �� !"#�� !"#$%&'()*+��

��=�� !"|||||||||||||||||||||||||||�� !"|||||||||||||||||||||||||||�� !"|||||||||||||||||||||||||||��|||||||||||||||||||||||||||||||||

�� !"||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||PK ��L��

�� !"#$=E�� !"#$%||||||||||||||||||||||||||||||||=F�� !"#$%&'(�� !"# �� !"#$%=E�� F�� !" �� !"#�� !"#$%�� !"#$=E�� F=��

��=�=�||||� ��=�=�||||�� !"��=�=�||||� ��=�=�||||� �� =�=�||||�

�� !"#$%�� !"#�� !�"=E�� F=E_çíìäáåìã=qçñáåF=�=�||||�� !"#$%=EmÜÉåçä=ÄäçÅâF=�||||�

�� !"#$=EpÉäÉÅíáîÉ=Ççêë~ä=êáòçíçãóF=�||||�� !"||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||�� !L�� !"#$%&' �� !" �� ! �� !"#�� !L�� !"#$%|||||||||||||||||||||||||||||||||||||||||||||||||||

fffK �� !"#=E�√�� !"#$%&'()*+,-./√��F

NK �� !"#$�� !"#$%&'()||||��||||�� !"#$%&||||��||||�� !"#$%||||��|||�� !"#$%& '()=E�� F��||||��||||�� !"#$%&'()=E�� F��||||��|||�� !"#$%&||||��||||�� !"#$E��F��||||��||||�� !"#$%&'||||��||||�� ||||||||||||||||||||||||||||�� !"#$%&'()*+,�� !" �� ! �� !"#�� !"#$%&'()*+,-|||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||

|||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||OK �� !

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�� !"=�� !"#$%&=|||=��=|||=�� !"#$%&=|||=��=|||=�� !"#$%&=|||=��=|||=��L�� !"#$%=|||=��=|||=�� !"#$%&=|||=��=|||=�

�� !|||||||||||||||||||||||||||||||||||||||||||||�� !"#||||||||||�� !"#$%&'()*+,�� !" �� ! �� !"#�� !"#$%&'()*+,-.||||||||||||||||||||||||||||||||||||||||||||||

PK �� !PKN=�� !�� !"#$%&'()* ��=E�� !"PKOF

Hong Kong Med J Vol 11 No 5 October 2005—Appendix iii


�� !"#$%&'( �� !�� !"#$%&'()*+||||||||||||||||||||||||||||||||||||||||||�� !"#$%&'()*+,�� !" �� ! �� !"#�� !"#$%&'()*+,-��

��=�� !"|||||||||||||||||||||||||||||�� !"#$%=E�||��||�� ||��F�� !"|||||||||||||||||||||||||||||�� !"|||||||||||||||||||||||||||||�� |||||||||||||||||||||||||||||||||

�� !"||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||PKO=�� !�� !"#$%&'()* ��=E�� !"PKPF

�� !"#$%&'()*+,�� !" �� ! �� !"#�� !"#$%&'()*+,-��

��=� �� !"|||||||||||||||||||||||||||||�� !"#$%=E�||��||�� ||��F�� !"|||||||||||||||||||||||||||||�� !"|||||||||||||||||||||||||||||�� |||||||||||||||||||||||||||||||||

�� !"||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||PKP=�� !�� !"#$%&'()* ��=E�� !"PKQF

�� !"#$%&'()*+,�� !" �� ! �� !"#�� !"#$%&'()*+,-��

��=� �� !"|||||||||||||||||||||||||||||�� !"#$%=E�||��||�� ||��F�� !"|||||||||||||||||||||||||||||�� !"|||||||||||||||||||||||||||||�� |||||||||||||||||||||||||||||||||

�� !=�||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||PKQ=�� !"�� !"#$%&'()* ��=E�� !"QF�� |||��|||�� !"|||�� |||�� !"#$%||||

E�� !"#$ �� ! �� !F�� !"#$|||��|||�� !"|||�� |||�� !"#$%||||

E�� !"#$ �� ! �� !F�� |||��|||�� !"|||�� |||�� !"#$%||||

E�� !"#$ �� ! �� !F�� |||��|||�� !"|||�� |||�� !"#$%||||

E�� ||||||||||||||||=F E�� !"#$ �� ! �� !F�� |||��|||�� !"|||�� |||�� !"#$%||||

E�� ||||||||||||||||=F E�� !"#$ �� ! �� !FQK �� !L�� !"#=E�√�� !"#$%&'()* +,F

�� !"#�� ||||||�� !�� !" �� !" �� ! �� !�� !"#��||�=E�� F�� !"#�� |||||||||||||||||||||||||||||||||||||||||||||

�� !

M�O� �� !"#$%&' �� !" �� |||||||||||||||||O�S� �� !"#$%&'

�� !"#$ �� !" �� |||||||||||||||||S=�� !" �� |||||||||||||||||

�� !

M�O� �� !"#$%&' �� !" �� |||||||||||||||||O�S� �� !"#$%&'

�� !"#$ �� !" �� |||||||||||||||||S=�� !" �� |||||||||||||||||

�� !

M�O� �� !"#$%&' �� !" �� |||||||||||||||||O�S� �� !"#$%&'

�� !"#$ �� !" �� |||||||||||||||||S=�� !" �� |||||||||||||||||

Chan et al

iv Hong Kong Med J Vol 11 No 5 October 2005—Appendix

�� !"#$%&'()*+,-./0�� !" �� ! �� !"#�� !"#$%&'()*+�� =� �� !"|||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||

�� !"�� !"|||||||||||||||||||||||||||||||||||||||||||||||||||�� !"|||||||||||||||||||||||||||||||||||||||||||||||||||�� !"|||||||||||||||||||||||||||||||||||||||||||||||||||�� !"|||||||||||||||||||||||||||||||||||||||||||||||||||��|||||||||||||||||||||||||||||||||||||||||||||||||||

�� !"|||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||

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fsK �� !NK �� !"#$%&'()*+,-�./0'123*4567*812'9:=ENF�� !"#

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OK �� !"#$%&'()*+,�� ! ��=E�|||�|||�F�� ! �� ! ��=E�|||�|||�F�� ! �� ! ��=E�|||�|||�F�� !"L �� ! ��=E�|||�|||�F�� !�� ! �� ! ��=E�|||�|||�F�� ! �� ! ��=E�|||�|||�F��=E�� F�||||||||||||||||||||||||||||||||||||||||||||||||||

PK �� !"#$%&'()*+,-./012�� ! ��=E�|||�|||�F�� ! �� ! ��=E�|||�|||�F�� !" �� ! ��=E�|||�|||�F�� ! ��=E�|||�|||�F�� !"#$�� ! ��=E�|||�|||�F��=E�� F �||||||||||||||||||||||||||||||||||||||||||||||||�� !"#$%&'()�� ! �� !"�� !"#$%&'()*||||||||||||||||||||||||||||||||||||||

QK �� !"#$%&'()*+,�� =��

�� !"�� !"=E�� !||||||||||||||||||||=F�� !"#$%=E�� !||||||||||||||=F�� !"#$%&=E�� !||||||||||||=F�� =E�� !||||||||||||||||||||||||=F

RK �� !"#$%&'(�)*+,�� !" �� ! �� !"SK �� !L��=||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||

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úúú=�� !"#$%&'()*+,-�=úúú

�� !"#$%&'()*+,-.%&'/012�3456789

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neuroimpairment, activity limitation, and participation ... · d poon, m phil, pdpt correspondence...

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