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Who, why, when and how?

Beginning powered mobility for young children with Cerebral Palsy

Outline

Who? - which children with CP benefit most from early use of power Why? - benefits of powered mobility for children with CP When should it be introduced? How? introduction to powered mobility training

Literature Review

May 2007 CINAHL and MEDLINE Hand searching Inclusion

Children with CP Powered mobility intervention

Power mobility toys

Scooterboard

Gross Motor Function Classification System (GMFCS)


1 Walks without Restrictions: limitations are present in more advanced motor skills 2 Walks without Assistive Devices: limitations are present in walking outdoors and in the community 3 Walks with Assistive Mobility Devices: limitations are present in walking outdoors and in the community 4 Self Mobility With Limitations: children are transported or use power mobility outdoors and in the community (are usually joystick drivers) 5 Self Mobility is Severely Limited: even with use of assistive technology (may be joystick or alternate access drivers)
Palisano,R. et al. Developmental Medicine and Child Neurology 1997; 39: 214-223

At what age do you think children in level IV achieve most (90%) of their motor development?
40% 35%

1. 2. 3. 4.

2.5 3.5 4.5 5.5

years years years years


1 2

20%

5%
3 4

Level IV

Children in Level IV achieve 90% of their motor development by age 3.5 years

(Rosenbaum et al., 2002)

At what age do you think children in level V achieve most (90%) of their motor development?
40% 30%

1. 2. 3. 4.

2.7 3.7 4.7 5.7

years years years years


1

15%

15%

Level V

Children in Level V achieve 90% of their motor development by 2.7 years


(Rosenbaum et al., 2002)

Importance of independent mobility

Self-produced locomotion plays a crucial role in cognitive and psychosocial development

Limited mobility has a negative impact on development

Able bodied children in orphanages deprived of normal opportunities to move (Dennis, 1973) Tatlow (1980) found children with disabilities who could not move independently were passive and had vague body awareness

Independent mobility makes kids smarter

Campos and Bertenthal (1987) believe that independent locomotion facilitates psychological change Locomotor experience is linked to selfawareness, emotional attachment, spatial orientation, fear of heights and visual/vestibular integration (Kermoian, 1997)

Butler C., Okamoto G.A., & McKay T.M. (1983). Powered mobility for very young disabled children. Developmental Medicine and Child Neurology. 25, 472474.

9 motor disabled children aged 20 39 months Motorized chair at home over a 7 week period 8 children were able to drive safely and independently Stimulated social emotional and intellectual behaviour

Butler C., Okamoto G.A. & McKay T.M. (1984). Motorized wheelchair driving by disabled children. 95-97.

Archives of Physical Medicine and Rehabilitation. 65,

13 children with physical disabilities aged 20 to 37 months. 12 children learned to drive the chair competently in an average of 16 days. Able to drive without bumping doorways or corridors and stop without hitting obstacles in less than five days Conclusion:

Children as young as 24 months can learn to drive a power chair

Butler C. (1986). Effects of powered mobility on selfinitiated behaviors of very young children with locomotor disability. Developmental Medicine and Child Neurology, 28, 325-332.

Multiple baseline design 6 children with physical disabilities aged 2338 months Used chair for less than three weeks Conclusion:

Most increased frequency of interaction with objects Increased spatial exploration Affected communication with caregiver

Paulsson K. and Christoffersen M (1984). Psychosocial aspects on technical aids How does independent mobility affect the psychosocial and intellectual development of children with physical disabilities? Proceedings of the 2nd International conference on Rehabilitation Engineering, 282-285.

12 physically disabled preschoolers aged 2.5 5 years Electrical go-kart for 1 year Caregivers and Therapists reported positive effects on emotional, intellectual and motor development

And yet

Ontario study (Palisano et al, 2003) of 636 children with CP only 24% of children at GMFCS level IV and 3% of children in Level V used powered mobility UK report (Staincliffe, 2003) 10% of services exclude under 5s 46% of services are never referred under 5s 46% more services offered indoor/outdoor chairs to over 5s than under 5s

Opportunities for mobility

Children with disabilities should be provided with the same opportunities as other children (and at the same age) to move independently and to explore their environment Options:

Supportive walkers/gait trainers Adapted tricycles Powered mobility

Do you think children with CP under 2 years are able to use powered mobility?
65%

1. Yes 2. No

35%

Have you ever used powered mobility with young children with CP?
40% 35%

1. Yes- under age 3 2. Yes under age 5 3. Yes but only older children 4. No
1

15% 10%

Myth
Young children with CP are not ready to use this expensive type of equipment

Jones M.A. (2004). Effects of power mobility on the

development of young children with severe motor impairments. Doctoral dissertation: University of
Oklahoma Health Sciences Center.

12 children with severe motor impairments 14.8 to 30 months 7 children diagnosed with CP and one with hydrocephalus all Level IV or V Youngest child with CP - 17 months Randomized control trial Power chair use for one year 4-34 weeks to learn basic wheelchair skills

Results

Intervention group had significantly greater improvement :

receptive language (Batelle Developmental Inventory) social function functional skills (PEDI) self-care caregiver assistance (PEDI)

Bottos M et al. (2001). Powered wheelchairs and independence in young children with tetraplegia. Developmental Medicine and Child Neurology. 43, 469477.

single subject AB design 25 children aged 3-8 years Tetraplegic CP 6-8 months baseline with before and after measures 6-8 months powered mobility use

Results

No significant change in IQ, motor deficit or quality of life Highly significant increase in independence Cognitive level and motor deficit not statistically related to driving performance Most children 21/27 were able to drive Time spent in the chair did correlate with driving performance

Furumasu J, Tefft D, Guerette P (2007). The impact of early powered mobility on young childrens play and psychosocial skills. Proceedings of the 2007 RESNA Annual Conference. Phoenix, AZ: RESNA Press.

23 children, 18-42 months with orthopaedic disabilities, 18-72 months with CP 4-6 month baseline with before and after measures 4 months intervention phase Language, play, social skills

Results

Significant improvement in social skills Increased amount of physical play and significantly improved quality of play No change in language or cognitive development

Would you prescribe a power wheelchair for a child with CP who can propel a manual wheelchair indoors?
55% 45%

1. Yes 2. No

Would you prescribe a power wheelchair for a child with CP who can walk with a walker?
65%

1. Yes 2. No

35%

Myths
Using a power chair will prevent a child from walking A child who has any potential to propel a manual chair or to walk should be encouraged to do so as much as possible

Jones M.A. (2004). Effects of power mobility on the

development of young children with severe motor impairments. Doctoral dissertation: University of
Oklahoma Health Sciences Center.

Motor skills did not decline in either the experimental or control group

Bottos M. and Gericke C. (2003). Ambulatory capacity in cerebral palsy: prognostic criteria and consequences for intervention. Developmental Medicine & Child Neurology. 45, 786-790.
1.

2.

3.

Children who cannot sit independently and crawl or bunny hop by age 3 are unlikely to walk Those who have achieved these milestones by age 3 will likely walk by age 7 but many will lose the ability to walk in the future Those who walk by age 3 will maintain walking longest, but may still lose ability to walk due to physiological burnout

Gross Motor Function Classification System (GMFCS)


1 Walks without Restrictions: limitations are present in more advanced motor skills 2 Walks without Assistive Devices: limitations are present in walking outdoors and in the community 3 Walks with Assistive Mobility Devices: limitations are present in walking outdoors and in the community 4 Self Mobility With Limitations: children are transported or use power mobility outdoors and in the community (are usually joystick drivers) 5 Self Mobility is Severely Limited: even with use of assistive technology (may be joystick or alternate access drivers)
Palisano,R. et al. Developmental Medicine and Child Neurology 1997; 39: 214-223

Changing Perspectives?

Wiart L. and Darrah J (2002). Changing philosophical perspectives on the management of children with physical disabilities their effect on the use of powered mobility. Disability and Rehabilitation. 24 (9), 492-498.

ICF Dynamic systems theory Family centred care Efficiency Environmental considerations Variety of mobility options

How do you decide whether a child is ready for powered mobility?


1. Cognitive readiness tests 2. Formal driving tests 3. Provide practise opportunities and evaluate in natural setting 4. Practise with switches and joystick on computer
33% 28% 28%

11%

Myth
Children need certain cognitive and prerequisite skills before being ready to try powered mobility

Furumasu J., Guerette P. and Tefft D. (2004). Relevance of the pediatric powered wheelchair screening test for children with Cerebral Palsy. Developmental Medicine & Child Neurology. 46, 468-474.

26 children with CP (aged 2-6 years) Assessments:

Pediatric Powered Wheelchair Screening Test (PPWST) Symbolic Representational Scale (SRS) Coping Inventory

6 wheelchair training sessions final session assessed using Power Mobility Program (wheelchair driving test)

Results

PPWST predictive for children with CP who were able to use joysticks SRS marginally increased predictive power for this group only. Children should be beyond the object level in order to drive functionally PPWST was not predictive for children with CP who used switch controls

Bottos M et al. (2001). Powered wheelchairs and independence in young children with tetraplegia. Developmental Medicine and Child Neurology. 43, 469477.

Cognitive level not statistically related to driving performance Majority able to drive, including 7/13 with moderate to severe intellectual impairment.

Would you use powered mobility with a child who doesnt have established cause & effect?
70%

1. Yes 2. No
30%

Myth
Children need to demonstrate understanding of cause-effect with toys and computers before being introduced to powered mobility

Nilsson L. and Nyberg P.J. (1999). Single-switch control versus powered wheelchair for training cause-effect relationships: case studies. Technology and Disability. 11, 35-38.

Case study - 1yr old girl

Drove with intent at 2 years and understood use of switch toys. Drove functionally at 3 years but did not understand use of computer mouse until age 4 .

Nilsson and Nyberg (1999) cont.

40 individuals aged 1-50 functioning at an early developmental level

9 could drive a powered chair but only 2 could use a computer mouse. 14 enjoyed switch toys but only 5 could wait for response from toy before hitting switch again.

Nilsson and Nyberg (1999) cont.

17 infants (typically developing) followed from 3-12 months

At 3-4 months infants understood causeeffect with joystick. At 7-8 months they understood direction in chair and used switch toys. At 12 months they still had no interest in computer mouse.

Nilssons suggested Developmental Progression


Early cause-effect in powered chair Beginning directional control and causeeffect with separate switch and toy Functional Driving Computer mouse use

Would you ever recommend a power wheelchair for a child who requires 1:1 supervision?
60%

1. Yes 2. No

40%

Would you ever use powered mobility with a child who has a marked visual impairment?
85%

1. Yes 2. No
15%

Myths
Children with multiple and complex disabilities are not able to use power wheelchairs Children with sensory disabilities cant use power mobility

Odor P. and Watson M. (1994). Learning through Smart

Wheelchairs: A Formative Evaluation of the effective use of the CALL Centres Smart Wheelchairs as past of childrens emerging mobility, communication, education and personal development.
http://callcentre.education.ed.ac.uk

Qualitative study 13 children with a wide spectrum of physical, cognitive and sensory issues. 3 educational settings. Smart Wheelchair for one school year Progress was measured using IEP goals Computer analysis of interaction

Smart Wheelchair

Results

Safe learning environment Promoted broad developmental changes e.g. cause-effect, motivation, initiation, assertiveness and persistence Some children transitioned to standard powered chair

Deitz J., Swinth Y. and White O. (2002). Powered mobility and preschoolers with complex developmental delays. American Journal of Occupational Therapy. 56 (1), 86-96.

Single subject ABAB 2 preschoolers with quadriplegic CP Powered mobility riding toy during free play 3-4 hours total for each child Results:

Increase in self-initiated movement during intervention phase with immediate returns to baseline when intervention was withdrawn Some effect on interaction Effect on affect variable

Nilsson L. and Nyberg P. (2003). Driving to Learn: A new concept for training children with profound cognitive disabilities in a powered wheelchair. American Journal of Occupational Therapy. 57 (2). 229-233.

Qualitative design 2 preschoolers with profound cognitive, visual and motor disabilities 12 months powered chair use Increased alertness and response to stimuli Increased use of upper limbs Increased understanding of cause-effect

Concern
Families of young children arent ready

What do you think are the greatest barriers for families when beginning to talk about powered mobility?
1. Emotions (i.e. giving up on walking or fear of losing strength) 2. Attitudes (i.e. viewing the child as looking more disabled) 3. Barriers with environment or transportation 4. Funding
50% 39%

6%
1 2 3

6%
4

Wiart L, Darrah J, Hollis V, Cook A and May L (2004). Mothers perceptions of their childrens use of powered mobility. Physiotherapy & Occupational Therapy in Pediatrics. 24 (4), 3-21.

Qualitative study - interviewed 5 mothers of children who were using power mobility Negative feelings towards first wheelchair Power mobility seen as a last resort Positive feelings as child experiences increased independence and control Environmental barriers Enables meaningful engagement Positive effect on others attitudes

How?

What is the best way for young children with CP to learn to use powered mobility?

What is your approach to powered mobility training?


1. Informal let child use chair in daily life 2. Formal training following directions, obstacle courses etc 3. Safe environment play based learning
50% 44%

6%
1 2 3

Durkin J (2005). Developing powered mobility with Brighton.


children who have multiple and complex disabilities: Moving forward. Doctoral dissertation. University of

Qualitative study grounded theory Aim to identify components and development of how children learn to use powered mobility Observation of 11 typical children 6 months -5 years Observation of 11 children with disabilities Focus group with 7 children who used powered mobility Focus groups with 22 peer professionals

Recommendations

Safe learning environment Child-led approach Adult as a responsive partner Beginning learners are distracted by and cannot attend to adult verbal instruction

Jones M.A. (2004). Effects of power mobility on the

development of young children with severe motor impairments. Doctoral dissertation: University of
Oklahoma Health Sciences Center.

Children with complex difficulties take longer to learn to use the power chair More intense training may be helpful in a structured controlled environment for initial skill acquisition. Blocked trials are better for initial learning but random practise is better for skill retention

Odor P. and Watson M. (1994). Learning through Smart

Wheelchairs: A Formative Evaluation of the effective use of the CALL Centres Smart Wheelchairs as past of childrens emerging mobility, communication, education and personal development.
http://callcentre.education.ed.ac.uk

Most successful when child had opportunity for structured and unstructured use throughout the day Less successful outcomes related more to lack of opportunity due to poor environmental support and integration than a difference in the childs abilities

Nilsson LM and Eklund M (2006). Driving to learn: Powered wheelchair training for those with cognitive disabilities. International Journal of Therapy and Rehabilitation. 13, 517-527.

45 people with profound multiple and cognitive disabilities Age 12 months 52 years Video recordings Aim to identify indicators of factors that facilitated or hindered learning joystick use in the powered chair

Recommendations

Chair needs to have immediate response when the joystick is moved Midline joystick position Chair needs to have low speed, low power and respond the same way in all directions Use of safety stop switches, bumpers and line followers can interfere with learning

Expectations

Exploratory drivers Supervised drivers

Independent drivers

Implications for practice

Use of a powered mobility device can enhance psychosocial development and independence in young children with CP

Implications for practice

Using powered mobility at a young age will not impede development of independent ambulation or other motor skills

Implications for practice

Children with CP who have a poor prognosis for independent ambulation (GMFCS Levels IV and V) require assisted mobility opportunities at the same age as their typical peers in order to promote overall development.

Implications for practice

IQ and cognitive readiness tests do not predict which children with CP will become functional power chair users

Implications for practice

Children with CP may need more time and training than other children learning to use powered mobility. Potential cannot be determined based on a short term trial

Implications for practice

Young children may learn to use switches and joysticks in a powered mobility device more easily than with toys and computers.

Implications for practice

Initial training for powered mobility in therapy sessions is helpful before the child is ready to use a power chair in daily life Children need time to play and explore on their own and may be distracted by adult direction Mixture of structured and unstructured training

Implications for practice

Time and environmental support are very important

Equipment options

Child Development Centres Wheelchair vendors Red Cross Loan Bank Sunny Hill

Review

Would you try powered mobility with a child with CP under the age of 2 if equipment was available?
70%

1. Yes 2. No

30%

Would you prescribe a power wheelchair for a child with CP who can propel a manual wheelchair indoors?
55% 45%

1. Yes 2. No

Would you prescribe a power wheelchair for a child with CP who can walk with a walker?
55%

1. Yes 2. No

45%

Would you ever use powered mobility with a child who doesnt have established cause & effect?
70%

1. Yes 2. No
30%

Would you ever recommend a power wheelchair for a child who requires 1:1 supervision?
55%

1. Yes 2. No

45%

Would you ever use powered mobility with a child who has a marked visual impairment?
55%

1. Yes 2. No

45%

What do you think is the best way to assess readiness for powered mobility?
1. Cognitive readiness tests 2. Formal driving tests 3. Provide practise opportunities and evaluate in natural setting 4. Practise with switches and joystick on computer
33% 28% 22% 17%

What do you think is the best way to train powered mobility skills?
1. Informal let child use in daily life 2. Formal training following directions, obstacle courses etc 3. Safe environment play based learning
56%

28% 17%

What are the greatest barriers to use of powered mobility in your area?
1. 2. 3. 4. 5.
Therapist attitudes Parental attitudes Time Equipment Funding
56%

22% 6%
1 2 3

6%
4

11%

What solutions would be most helpful?


1. Information for parents 2. Information for therapists 3. Easy access to loan equipment 4. Information for managers
50%

22%

22%

6%
1 2 3 4

Will your practice change as a result of this information?


1. No- I knew all this already 2. Ill begin providing information to parents sooner 3. Ill look into options for loaning or using powered mobility equipment
56%

28% 17%

Questions or Comments?

References

Campos, J.J. & Bertenthal, B.K. (1987). Locomotion and psychological development in infancy. In K.M. Jaffe (Ed). Childhood powered mobility: Developmental, technical and clinical perspectives (11-42), Washington (DC): RESNA. Kermoian, R. (1997). Locomotion experience and psychological development in infancy. In: J.Furumasu (Ed). Pediatric powered mobility: developmental perspectives, technical issues, clinical approaches (pp7-21), Arlington (VA): RESNA. Palisano, R.J., Rosenbaum, P.L., Walter, S.D., Russell, D.J., Wood, E.P., & Galuppi, B.E. (1997). Development and reliability of a system to classify gross motor function in children with cerebral palsy. Developmental Medicine and Child Neurology, 39, 214-223. Palisano RJ, Tieman BL, Walter SD, Bartlett DJ, Rosenbaum, PL, Russell D and Hanna SE (2003). Effects of environmental setting on mobility methods of children with cerebral palsy. Developmental Medicine and Child Neurology. 45, 113-120. Rosenbaum, P.L., Walter, S.D., Hanna S.E., Palisano R.J., Russell, D.J., Raina, P., et al. (2002). Prognosis for gross motor function in cerebral palsy: Creation of motor development curves. Journal of the American Medical Association, 288 (11), 1357-1363. Staincliffe S (2003). Wheelchair services and providers: discriminating against disabled children? International journal of Therapy and Rehabilitation, 10 (4), 151-158.