pediatrics/cerebral palsy - fig education 7 workbook.pdf · ... apply and demonstrate the nursing...

©2011, Shelene Giles. All rights reserved. No part of this publication may be reproduced, stored in a retrieval system, or transmitted, in any form or by any means, electronic, mechanical, photocopying, recording, or otherwise, without prior written permission from the publisher.

Section 7

Pediatrics/Cerebral Palsy

WORKBOOK

Nurse Life Care Planning - Through the Ages

©2011, Shelene Giles. All rights reserved. No part of this publication may be reproduced, stored in a retrieval system, or transmitted, in any form or by any means, electronic, mechanical, photocopying, recording, or otherwise, without prior written permission from the publisher.

Nurse Life Care Planning - Through the Ages Section 7 – Pediatrics/Cerebral Palsy

OBJECTIVE 1: Explain the growth and development stages in a child's life. Understand the impact of a catastrophic

injury/illness in this growth and development process.

OBJECTIVE 2: Explain the classifications of cerebral palsy. Identify levels of impairment based on severity of cerebral

palsy.

OBJECTIVE 3: Describe acute and chronic complications of cerebral palsy. Identify long term treatment and outcomes

of cerebral palsy.

OBJECTIVE 4: Apply and demonstrate the nursing process as a life care planning foundation for a cerebral palsy client.

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Pediatrics

Children are not small adults

Growth and development proceed in a predictable, sequential fashion for all children - individual rate and level of

achievement varies

Height/weight/head circumference - important indicators of health and disease

Children continue to grow & develop (physical, cognitive, social, and emotional)

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Children must acquire mobility and fine motor skills to independently negotiate their environment

Cognitive development progresses from concrete to abstract thinking - ultimately provides for learning and problem

solving

Children develop trusting relationship with parents or primary caregivers, then sibling, and lastly with strangers

Children also learn socially appropriate behavior and culturally acceptable norms

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©2011, Shelene Giles · [email protected] · (828) 698-9486

Positive body image and self-esteem are essential building blocks to healthy emotional development

Play is children's work

Play also helps with anxiety-provoking situations

Involvement in sports and recreation provides exercise

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Impact of chronic illness/disability varies for each child

Effects of disability are similar among children

Differences created among peers

Physical growth and development may be below expected age

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Special services/assistive technology/assistive devices may be necessary for participation and success in school and

recreation

Relationships with family/peers/significant others may be altered

Psychosocial factors may be greater determinants of overall success in life - rather than severity of child's disability

_______________________________________________________________________________________

(HANDOUT - Rehabilitation Nursing, Table 31-1 DISCUSS IN DETAIL)

Impact on Child Development

Infants

Range of motion

Positioning

Pre-mobility skills

Oral motor skills

Developmental stimulation

Seating devices

Orthoses & prosthesis

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Toddlers

Mobility skills

Mobility devices

Assistive devices

Prosthetics & orthotics

ADLs

Communication skills

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Preschool children

Mobility skills and devices


ADLs

Bowel and bladder training

Social interaction skills

Fine motor skills

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School-aged children

Mobility skills and devices

Socialization skills


ADLs

Fine motor skills

Education

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Adolescents

Changes in mobility

Independent living skills

Socialization skills

Prevention of secondary complications

Psychosexual development


Vocational and driving rehabilitation

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Impact of Disability

Children receive ongoing medical care

Medical care and effects of disability cause interruptions in school, social activities, and life in general

Other siblings have positive/negative reactions

Family dynamics/roles change

Children affected by physical, mental, cognitive, social disabilities

Disabled children at higher risk for psychological or social impairments

Transition to school, college, and work are more stressful

Community integration/social activities can be limited

(HANDOUT - Life Care Planning for Pediatric Chronic Pain Patients)

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Overview

Definition - Cerebral Palsy (CP) describes a group of disorders of the development of movement and posture, causing

activity limitation, that are attributed to non-progressive disturbances that occurred in the developing fetal or infant brain.

The motor disorders of CP are often accompanied by disturbances of sensation, cognition, communication, perception

and/or behavior, and/or by a seizure disorder.

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Injury/insult to immature brain - can occur before birth or up to 3 years old

Disorder usually caused by brain injuries that occur early in course of development

Posture and movement disorder

Cause muscles to be rigid/stiff or floppy/weak

Non-progressive

No cure

Leading cause of childhood disability affecting function and development

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(HANDOUT - Cerebral Palsy Fact Sheet)

Incidence

In Europe and United States, CP occurs in 2 - 4 out of every 1,000 births

In 2001, estimated 764,000 people in US living with CP

10,000 infants diagnosed with CP each year

1,200 - 1,500 children diagnosed with CP each year

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Risk Factors

Premature birth

Low birth weight

Breech birth

Multiple babies

Toxic substances

Mother's health

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Etiology

Infection - from mother during pregnancy

German measles (rubella)

Chickenpox (varicella)

Cytomegalovirus

Toxoplasmosis

Syphilis

Meningitis

Viral encephalitis

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Congenital abnormalities

Stroke

Lack of oxygen

Severe jaundice

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Bacterial meningitis

Viral encephalitis

Falls

Hypoxia

Motor vehicle crashes

Child abuse

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Cerebral insult includes vascular, hypoxic-ischemic, metabolic, infectious, toxic, teratogenic, traumatic, and genetic

causes

Cerebral insult alters muscle tone, muscle stretch, reflexes, primitive reflexes, and postural reactions

Other associated/secondary symptoms include mental retardation, vision and hearing problems, and seizures - not part of

definition of CP (secondary diagnosis)

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(HANDOUT - Cerebral Palsy)

(HANDOUT - Hypoxic/Anoxic Brain Injury)

Diagnosis

Insult/injury to brain takes place between prenatal development and age 3

Children typically not diagnosed until after age 1 year

Condition becomes identifiable when child fails to suppress primitive reflexes or fails to meet developmental milestones

Diagnosed by history and physical exam

Child presents with abnormal muscle tone

Hypotonic - more common

Hypertonic - decreased or increased resistance to passive movements

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Diagnostic studies - CT scan, MRI, EEG, ultrasound, lab work

CT scan/MRI can detect treatable conditions - arteriovenous fistula (AV) formation, hydrocephalus, subdural hematoma,

or hygroma

Physicians may also assess for associated disabilities - vision, hearing, seizures, perception problems with touch or pain,

cognitive dysfunction

_______________________________________________________________________________________

(HANDOUT - Cerebral Palsy: Hope Through Research)

Classification

1) Pyramidal/Spastic (80%)

Upper motor neuron involvement

Hyper-reflexia

Extensor Babinski response

Persistent primitive reflexes

Clonus

Muscular hyper tonicity

Overflow reflexes (crossed adductor)

Scissoring gait with toe talking

Tremors

Weakness

Cognitive impairment

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Quadriplegia (10-15%) - affects all 4 extremities, trunk involved

Diplegia (30-40%) - affects legs more than arms

Hemiplegia (20-30%) - affects 1 side (arm & leg), affects arm more than leg

Monoplegia - affects 1 limb

Spastic diplegia - displays scissoring gait due to hypotonia followed by extensor spasticity in legs & muscle imbalance,

little or no functional limitation of upper extremities, delay in developing gross motor skills

Spastic hemiplegia - weak hip flexion and ankle dorsiflexion, overactive posterior tibialis muscle, hip hiking/

circumduction, supinated foot, upper extremity posturing (shoulder adducted, elbow flexed, forearm pronated, wrist

flexed, hand clenched in a fist with thumb in palm), impaired sensation, impaired 2-point discrimination, and/or impaired

position sense, some cognitive impairment (28%)

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2) Extrapyramidal/Dyskinetic/Athetoid (15%)

Extrapyramidal movement patterns

Abnormal regulation of tone

Abnormal postural control

Coordination deficits

Abnormally slow writhing movements of arms/hands and legs/feet

Pseudobulbar involvement - chewing/swallowing/speech difficulties, drooling

Hypotonic at birth with abnormal movement patterns emerging at 1-3 years

Arms usually more involved than legs

Abnormal movement pattern increases with stress or purposeful activity

Muscle tone usually normal during sleep

Intelligence normal

High incidence of sensorineural hearing loss

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3) Ataxic (5%)

Wide-based unsteady gait walk

Tremors affect fine motor skills

Hypotonia muscle tone

Balance and coordination impairment

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Treatment

Goal is attainment of maximal functional ability for children with cognitive and/or physical deficits within the limitations

of their development

Goal of treatment to improve function/capabilities toward independence

Goal to sustain health and promote mobility, cognitive development, social interaction, and independence

Best clinical outcomes - early intervention/management

Treatment depends on specific symptoms

(HANDOUT - Foundations of Developmentally Appropriate Orientation and Mobility)

(HANDOUT - Sensory Development)

_______________________________________________________________________________________

(HANDOUT - Management and Prognosis of Cerebral Palsy)

Requires team approach

Cognitive function of child will impact progression/length/goals of therapies

Play used as rehabilitation tool

Therapy settings - home, private clinic, hospital, school

Frequency of therapies are based on natural developmental process

Address goals on weekly basis & re-evaluation every few months

_______________________________________________________________________________________

0 - 5 years

early childhood intervention

gross motor skills

range of motion

gait/mobility - splints, assistive devices, standers, walkers

home program & equipment

speech - focus on feeding, motor speech disorders, augmentive communication

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5 - 12 years

independence

transition from home to school

mobility (home & school) - walkers, wheelchairs

school therapies initiated

spasticity management

splint/orthotic maintenance

ADL equipment

parent education on transfers and safety

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12 years - young adult

ROM

function

mobility - assistive devices, walkers, wheelchairs

spasticity management

splint/orthotic maintenance

ADL equipment

parent education on transfers and safety

community programs

_______________________________________________________________________________________

(HANDOUT - Adopted Children with Disabilities: What Will Medicaid Pay?)

(HANDOUT - Children with Special Health Care Needs)

Health Care Expenses

Private health insurance

Medicaid

Medicare

State programs

School programs/IEP

Organization/association

Out of pocket

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Nurse Life Care Planning Process

Assessment

Medical records review

Nurse Life Care Plan Assessment

Nurse Life Care Plan Assessment

Musculoskeletal

Neurologic

Respiratory

Cardiovascular

Integumentary

Gastro - incontinence/program

Urinary - incontinence/program

Psychosocial

FIM-FAM

Bathing/showering/hygiene

Grooming

Dressing

Feeding

Mobility

Transportation

Living arrangements

_______________________________________________________________________________________

Nursing Diagnosis

Activity intolerance

Fatigue

Sleep pattern disturbance

Altered nutrition

Impaired swallowing

Pain

Ineffective airway clearance

Risk for aspiration

Risk for falls

Altered health maintenance

Caregiver role strain

Impaired verbal communication

Community coping, ineffective

Altered family processes

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(HANDOUT - Guidelines for the Care of Children and Adolescents with Cerebral Palsy)

Outcomes

Collaboration

Developmental Specialist/Physiatrist

Physicians

Therapists (OT, PT, speech, nutrition, cognitive, assistive technology, psych)

Home health providers

Equipment vendors

_______________________________________________________________________________________

(HANDOUT - Ohio Standards of Care)

(HANDOUT - Critical Elements of Care)

Medical Research

Early intervention & multi-disciplinary/team approach - best outcome

Clinical Practice Guidelines/Standards of Care

American Academy of Pediatrics (aappubiclations.org/endorsed_practice_guidelines/index.dtl)

Royal Children's Hospital/Clinical Practice Guidelines (rch.org.au/clinicalguide)

American Speech-Language-Hearing Association/Cerebral Palsy Guidelines (asha.org)

_______________________________________________________________________________________

Chronic Complications Growth & development delays

Impaired oral motor functions

Persistent primitive reflexes

Disorder of muscle tone

Abnormal neurological control

Impaired sensation to touch

Impaired sensation/perception of pain

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Impaired vision

Nystagmus

Strabismus

Hemianopia

Cortical blindness

Retinopathy of prematurity

Impaired hearing

Gastrointestinal

GERD

Vomiting

Constipation

Bowel obstruction

_______________________________________________________________________________________

Pulmonary

Seizures

Psychological disorders

Osteopenia/osteoporosis

Scoliosis

Higher risk for fracture

Hip subluxation/dislocation

_______________________________________________________________________________________

Spasticity/contractures

Chronic pain

Urinary incontinence

Cognitive impairment

(HANDOUT - Intellectual disability in children: Management, outcomes, and prevention)

Decubitus ulcers

(HANDOUT - Aging and Cerebral Palsy)

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(HANDOUT - AANLCP Journal - Determining Costs for a Pediatric Patient with Cerebral Palsy: Case Study)**

Planning

Treatment Recommendations in Nurse Life Care Plan

Medical

Physician appointments/evaluations

Developmental Specialist/Physiatrist - sees pediatric specialist until age 18-21, then transition to physiatrist

Pediatrician - local care

Musculoskeletal

Neurological

Genitourinary

Gastrointestinal

Cardiovascular

Respiratory

Integumentary

ENT

Audiology

Ophthalmology

Dentist

Psychiatry

Psychology

_______________________________________________________________________________________

Surgeries/Procedures (invasive vs. non-invasive)

Selective dorsal rhizotomy

Tendon lengthening

Adductor release

Hamstring transfers

Achilles release

Posterior tibial tendon transfer

Osteotomy

Fusion

_______________________________________________________________________________________

(HANDOUT - Life Care Planning for the Client with Severe Spasticity: Intrathecal Baclofen Therapy)

(HANDOUT - ITB Commonly Billed Codes)

Intrathecal Baclofen pump

Botox injections - upper extremity, serial casting/splinting, PT

Phenol injections - lower extremity, serial casting/splinting, PT

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Hospitalizations

Pneumonia

Prolonged seizure

Decubitus ulcers

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Therapeutic Evaluations

OT

PT

Speech/language

Developmental/cognitive

Neuropsychological

Nutrition

Recreational

Psychological

_______________________________________________________________________________________

(HANDOUT - Effect of Physiotherapy on Children with Cerebral Palsy)

HANDOUT - Prescribing Therapy Services for Children with Motor Disabilities)

Therapeutic Modalities

OT

PT

Recreational

Play

Hippo - horseback (narha.org)

Aquatic

Neurodevelopmental (ndta.org)

Speech/language

Nutritional

Psychological (individual & family)

Alternative

Sensory integration

Conductive therapy

Hyperbaric oxygen

Constraint inducted movement

Craniosacral massage

Acupuncture

Biofeedback

Electrical stimulation

Cerebral stimulator

Nutritional supplements/mega vitamins

Once child has plateau in formal therapy - transition to school/community/home programs for maintenance

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Reasons to restart therapy

Intervene with status change

Update home program

Evaluation intermittently for changing equipment needs

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Diagnostic Studies

Neurological - brain MRI, EEG, EMG/NCV studies

Musculoskeletal

Spine x-rays during growth years - scoliosis

Hip x-rays during growth years - subluxation/dislocation

Secondary diagnosis/complications/injuries

Respiratory

Chest x-ray and pulmonary function tests with aspiration pneumonia & oral motor impairment

Genitourinary

Gastrointestinal

Lab Work

Comprehensive metabolic panel

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Medications Oral antispasmodics

Diazepam (Valium)

Baclofen (Lioresal)

Dantrolene sodium (Dantrium)

Injectable antispasmodics

Phenol

Botox

Anti-convulsants - seizures

Gabapentin (Neurontin)

Lamotrigine (Lamictal)

Oyxcarbazepine (Trileptal)

Topiramate (Topamax)

Zonisamide (Zonegran)

Anti-cholingerics - dystonic/uncontrollable body movements or frequent drooling

Benztropine mesylate

Carbidopa-levodopa (Sinemet)

Glycopyrrolate (Robinul)

Procyclidine hydrochloride (Kemadrin)

Trihexyphenidyl hydrochloride

Stool softeners/laxative - constipation (Cerebral Palsy: Medications, 2008)

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(HANDOUT - Gastrostomy Feeding in Children with Cerebral Palsy)

(HANDOUT - Feeding and Gastrointestinal in Children with Cerebral Palsy)

(HANDOUT - Overview of Parenteral and Enteral nutrition)

(HANDOUT - Reimbursement for Foods for Special Dietary Use)

Medical Supplies

Nutrition

Respiratory

Bladder program

Bowel program

Skin care

Wound care/dressing changes

_______________________________________________________________________________________

Orthosis

Spine (TLSO - thoracolumbar sacral orthosis)

UE splints (WHO - wrist hand orthosis)

LE splints (HASO - hip abduction spinal orthosis) (AFO - ankle foot orthosis)

Most orthosis customized - allow for OT evaluation/re-evaluation for replacement

_______________________________________________________________________________________

(HANDOUT - Evaluation of Computer-Access Solutions for Students with Quadriplegic Athetoid Cerebral Palsy)

(HANDOUT - Prescribing Assistive-Technology Systems: Focus on Children with Impaired Communication)

Purpose of DME - promote learning and functioning, kitchen/bathroom/bedroom safety for client & caregiver, therapy,

and ADLs

Durable Medical Equipment/Aids for Independent Function

Specifics of DME is dependent on severity of CP, level of physical/functional ability, and secondary issues related to CP

Examples of DME - DME to consider at younger age

Bath chair

Booster seat

Modified high chair

Wedges/pillows

Adaptive clothing

Modified eating utensils

Modified writing utensils

Communication aids

Standing frame

Therapy table

Therapy chair

Therapeutic equipment

Therapeutic toys/games

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Play is vital part of childhood - include selected toys/games to promote functioning, learning, and safe play

DME to consider at older age

Standing frame

Hospital bed vs. electric bed & mattress/overlay

Patient lift (manual vs. electric)

Transfer bench

Shower chair

Elevated toilet seat with rails

Adaptive clothing

Modified eating utensils

Modified writing utensils

Household aids

Communication aids

Assistive technology (Rehabilitation Engineering and Assistive Technology Society of North America - resna.org)

______________________________________________________________________________________

Mobility

Most children achieve maximum level of gross motor function by age 6-7 years

Many CP children can walk, but have poor balance and at high risk for falling/injury

Consider mobility aids for short and long distance ambulation

Specialized stroller

Walker

Customized manual wheelchair - customized required due to body structure/poor muscle control

Power assist wheelchair

Power wheelchair - consider ability to operate (cognitive & fine motor coordination)

Wheelchair maintenance/replacement

Wheelchair accessories

0 - 5 years

Mobility equipment re-evaluation every 3 months

Replacement as needed/more frequent (yearly) (due to growth/development)

Consider postural support

Specialized strollers (until 18 months - then place in wheelchair)

Gait trainer

Stander

Front-wheel drive wheelchair

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5 - 12 years

Mobility equipment - re-evaluation every 6 months

Replacement every 3 years

Gait trainer

Stander

Lightweight wheelchair

Tilt-in-space wheelchairs with modification

Power wheelchair

Attempts to promote independent mobility

13 years - young adulthood

Mobility equipment - re-evaluation yearly

Replacement every 5-7 years

Stander

Rigid wheelchairs

Power wheelchair

Custom molded seating system

_______________________________________________________________________________________

(HANDOUT - Financing of Pediatric Home Health Care)

(HANDOUT - Providing a Primary Care Medical Home for Children and Youth with Cerebral Palsy)

Non-medical

Home care/living arrangements

Most mainstream child care centers lack staff that are adequately trained or experienced in care of disabled child

Mothers opt to stay home from work and care for their child

Depending upon severity of CP, children will transition to school or continue homebound

Parents need relief from caring for child for special healthcare needs

Consider level of care/hours of care/duration/respite/long term options (@ age 21 - live in vs. residential)

Present options (present pros & cons)

Option 1: family home setting thru LE (consider parents at retirement age)

Option 2: family home setting thru age of parent retirement, then transition to supervised residence/group home

Option 3: family home setting thru completion of school, then transition to group home

Option 4: family home setting thru young childhood, then transition to group home

Respite in family home setting - consider parents being parents to their child

Be familiar with state Nurse Practice Act - which determines/designates skilled and unskilled care

Skilled (RN or LPN) - medications, catheterizations, wound care/dressing changes

Unskilled (Certified Nursing Assistant/Home Health Aide, Personal Care Attendant, or Companion) - bathing/showering,

hygiene, grooming, dressing, feeding, cooking, cleaning, transportation, errands

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Architectural renovations - major home modifications should begin around age 10-11 years old

Barrier free

Wheelchair accessible design

Assistive technology

OT home evaluation

Contractor home evaluation

_______________________________________________________________________________________

Transportation

Wheelchair accessible transportation

Private vs. public transportation

Private - large vehicle/minivan, then transition to full size van with modifications

Vehicle modifications/maintenance/repair

Handicap parking permit

Public - ability to communicate, cognitive thinking to navigate community, escort/home health aide

Children tend to have multiple therapy appts each week

Transferring in/out of vehicle - strain on family member/caregiver

Safe transportation - specialized car seat vs. wheelchair tie down (safer to sit in vehicle seat - instead of wheelchair)

Out of town travel expenses

_______________________________________________________________________________________

(HANDOUT - Definitions of Specific Learning Disability and Laws Pertaining to Learning Disabilities)

(HANDOUT - Navigating the Special Education Maze for Children with Medical Disabilities)

Educational/Vocational

Education

Individuals with Disabilities Education Act (IDEA)

Special education defined as specially designed instruction at no cost to parents to meet the unique needs of a child with a

disability

Instruction conducted in public school classrooms, private special education schools, state schools, in home, in hospitals,

skilled nursing facility, and other facilities

Special education - can begin with infants/toddlers experiencing developmental delays, physical or medical conditions

which have high probability of developmental delay, or at-risk infants/toddlers

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Special education services - nursing services, family training/counseling, special instruction for care,

speech/language/audiology/vision, OT, PT, psychological counseling, behavior intervention, services coordination, 1:1

assistant, medical services for diagnostic & evaluation purposes, early screening/assessment services, social work

services, assistive technology services/devices, transportation & related costs to receive services, and vocational

rehabilitation (any other services deemed to meet the needs of the child)

Individualized Family Services Plan (IFSP)

Individual Education Plan (IEP) - yearly review of IEP, school/therapists/counselor/school nurse/parents involved,

reassessment every 3 years

School therapies - focused on learning/functioning & barrier free environment while in school

Home therapies - focused on ADLs

Vocational

Vocational evaluation - sheltered vs. competitive employment

Vocational case management

Vocational modifications

_______________________________________________________________________________________

(HANDOUT - Promoting the Participation of Children with Disabilities in Sports, Recreation, and Physical Activities)

Other

Case management - implementation/evaluation of nursing process

Support group - CP associations

Summer camp

Fitness - gym vs. home

Recreational modifications

Guardian/conservator

_______________________________________________________________________________________

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