Meeting the Need of Children with Special Needs

Angela Ma

ECEP233-061

Professor: Lisa McCaie

April 5, 2013

Introduction

Kaitlyn and Kianne are identical twins, 5-year- old, who have been diagnosed with Cystic Fibrosis. In order to take care of them, their mother has recently quitted her job.

This family has concerns on:1. Kaitlyn and Kianne’s chronic diseases.2. Financial situation because of lack of income. 3. Their mother is completely feeling overwhelmed with the amount of medical appointments of her daughters . 4.Kaitlyn and Kianne will transit into Kindergarten next Fall.

one of the most life-threatening genetic diseases. multi-organ diseases cause thick, sticky mucus in the lungs leading to severe

respiratory problems thick mucus blocks the duct of pancreas preventing enzymes

from reaching the intestines that affect digestive system

Cystic Fibrosis

http://www.bioxplorer.com/azoospermia-and-cystic-fibrosis/

An error in salt and water exchange in some cells affect sweat glandsMay be more prone to sinusitis, hay fever, arthritis, diabetes, heart strain and cirrhosis of the liverApprox. 1 in 3,800 children in Canada has CFNo cure exists, shorter life spanIn 1960, most children with CF did not live long enough to kindergartenNowadays, average live to 30-year-old

http://www.youtube.com/watch?v=g17RmLOe4gUC

Facts of CF

More understanding of CF

Cystic fibrosis is a genetic disorder that is present from birth Approximately one in every 25 Canadians carries one

defective version of the gene responsible for cystic fibrosis. Carriers do not have, and can never get, cystic fibrosis.

How to diagnose Through a sweat test to measure the amount of salt Genetic testing based on blood sample

Causes

persistent coughing with phlegm frequent lung infections shortness of breath very salty-tasting skin poor weight gain frequent greasy, bulky stools or difficulty in bowel

movements

Symptoms

Physiotherapy and breathing exercises – preventing and controlling lung infections

Frequent courses of antibiotics – loosening and removing thick, sticky mucus from the lungs such as oral antibiotic, inhaled antibiotic and intravenous antibiotic

Replacement of enzymes help digestion – preventing blockages in the intestines

Use of extra vitamins – providing enough nutrition

http://www.cftrust.org.uk/media/82306/FS_Prescription_Charges_Mar_12.pdfhttp://www.nhlbi.nih.gov/health/health-topics/topics/cf/treatment.html

http://cystic-fibrosis.emedtv.com/cystic-fibrosis/treatment-for-cystic-fibrosis.html

Current Treatment

Adaptive Devices to Cystic Fibrosis

http://www.cysticfibrosis.ca/assets/files/pdf/cystic_fibrosis_in_canadae.pdf

High Frequency chest wall vest – break up mucus and help bring it to the upper airway where it can be coughed out or removed by suction. (WEEK 8 Classnote)

http://www.bartsandthelondoncharity.org.uk/Page/Norton-Rose

Nebuliser – a small electric compressor that converts a liquid medication to a fine mist inhaled to loosen mucus.

Adaptive Devices

http://image.made-in-china.com/2f0j00NgEarUtCRTos/Ultrasonic-Nebulizer-PT-502-.jpg

Medicine Inhaler Deliver medication for those suffering from chronic

obstructive pulmonary disease or other respiratory conditions. 

http://www.wisegeek.org/what-is-an-inhaler.htm#slideshow

Specialists involved as a support network

http://www.universitiesonline.net/wp-content/uploads/2012/10/medical-assistant.jpg

Pediatrician– specialize in child development and medical care.

Physician – makes medical decision, prescribe medication and lead caring team– update current research, follow treatment guidelineshttp://cysticfibrosis.about.com/od/livingwithcysticfibrosis/f/findCFdoc.htm

Nurse – knows each patient’s issue and supports the child’s treatment– provides help to another team member– sees patients and families

e

Physiotherapist – demonstrate how to perform airway clearance technique– uses a variety of technique to help loosen and remove mucus. Respiratory Therapist

– is responsible for nebulizers, compressors, and all apparatus for oxygen delivery

– sets up and maintains equipment for aerosol therapy– provide information on equipment and supervises treatment

Gastroenterologist– provide care for children with digestive diseases and disorders. 

(Cont’d)

Dietitian – gives advice on nutrition and enzymes – helps children grow and supports them to manage their

own dietary treatment. 

Psychologist/Psychiatrist – helps patient to deal with emotional discomfort and difficulty

Pharmacist– provides medication and explains the purpose of each drug,

dosage and routine

Dentist – provides oral health service to the child with CF who needs

to take more sugary foods than normal

(Cont’d)

Social worker– offers practical help and advice– offers emotional supports and help patients and their families

to cope with the diseases– searches and provides support network– has a working knowledge of the system of benefits for

individual situation such as financial aid, tax credit

Parent

– provides all relevant information about the child with special needs.

– provides daily care to the child with Cystic Fribosis

Early Childhood Educator– works with family with the children with special need.– provides support to the child at child care centre

(Cont’d)

The Role of the ECE The ways to meet the needs of

a child with Cystic Fibrosis

http://oppforall.com/wp-content/uploads/2012/12/Early-Childhood-Education-1.jpg

The Role of the ECE

Knowledge Know more about Cystic Fibrosis cause and symptoms Learn about adaptive devices for assisting the child Understand of the child’s health condition Learn to cater the child with special needs Understand the stressful situation of the family with the

child with Cystic Fibrosis

Environment Provide private space for the child with Cystic

Fibrosis

Health and Safety Minimize the spread of germs help keep the child with

Cystic Fibrosis healthy Support the child to stay active and strengthen their lung

muscles Children with Cystic Fibrosis need high calories, high

protein and high fat foods Provide high calories and high-salt food after physical

exercises http://www.cff.org/UploadedFiles/LivingWithCF/AtSchool/SchoolEnzymes/Nutrition-School-Enzy

mes-Sports.pdf

The role of the ECE (Cont’d)

Child Care Centre & ECE Strategies to support

Kaityln and Kianne & their parent

Schedule a special meeting with parent of Kaityln and Kianne Form 14 for sources Active listening to their concerns Consult parent to meet the child’s need such as their meal

arrangement, nutritional and medication needs Online research about Cystic Fibrosis in order to provide better

support to Kaityln and Kianne

Prepare for meeting with this family

Regular meeting with their parent to update children’s health situation

Consult Cystic Fibrosis healthcare professionals about the best way to help Kaityln and Kianne

Learn more about parent’s stressful situation in order to provide appropriate support

Give emotional support to parent Provide appropriate community resources such as

helping agencies and financial subsidy information Ask parent for information about their medication

treatment

Support Kaityln and Kianne’s Parent

Prepare a private area such as a small room with beds for Kaityln and Kianne because they need to take medication or use adaptive device

Adjust room setting for Kaiyln and Kianne easier to access washroom because of their digestive problem

More boxes of tissues for their needs when they cough a lot of to clear lung muscles

Modification of Child Care Environment

Communicate with each room staff for providing close attention to Kaitlyn and Kianne

Ensure room health environment Post up a medicine schedule and dosage for Kaitlyn and Kianne

(i.e. pancreatic enzymes) Set up a special log book to record Kaitlyn and Kianne’s health

condition in order to communicate with parent and their family doctor

Arrange one more staff to assist Kaitlyn and Kianne if necessary Provide a teacher’s guide to understand Cystic Fibrosis Teacher guide

Follow infection control guidelines http://www.cff.org/LivingWithCF/StayingHealthy/#Germs

Staff Team

Spend time to talk to children about Kaityln and Kianne with special need . Tell children Kaityln and Kianne sometimes will miss the class because they need to see doctor and they need more time to eat their lunch.

Explain that Kaityln and Kianne’s coughing is normal to clear their airway and no harm to them.

Encourage children with a flu and cold stay home to prevent spreading germs and bacteria.

Reinforce children to wash their hands to prevent from spreading germs. For example, when children arrive at child care centre, go to wash hands first.

Prepare Other Children

In time of taking lunch Ensure Kaitlyn and Kianne take their enzymes before and after meal Ensure that they have to take a large amount of enzymes (20 pills a day) with

food to digest and absorb adequate nutrients. Give them more time to eat.

In time of using adaptive devices Check their medication routine for airway clearance 30 min. at a time

-

Higher Supervision

In time of bowel movement Close attention to their abdominal pain because of their

digestive system

In time of physical activity and exercise Limit physical activity level and time Encourage breathing exercises

Higher Supervision

- Encourage Kaithlyn and Kianne participate more physical activity to strengthen their lung muscle

- Provide salty snacks such as pretzels for Kaitlyn and Kianne to regulate their body’s needs after exercise .

- Provide much more water to them to prevent dehydration during exercises . (approx. six to 12 ounces per 20-30 minutes) http://www.ncbi.nlm.nih.gov/pubmed/7226733

Physical Exercise

Know basic technique such as clapping the chest, breathing exercises and vibrating machine help to release their mucus.

Promote hand washing more frequently to reduce germs Sterilize toys after each play Ensure that Kaitlyn and Kianne cannot expose to excessive

heat and cold weather because of respiratory system Provide high calories, high fats and high protein foods for

their nutritional needs such as meat, bean, eggs etc. Poster to remind children to have frequent hand hygiene

Health and Safety

Learn easy physiotherapy technique such as clapping their back to clear thick mucus

Flexible for their bathroom time Increase their self-image and self-esteem through different

activities such as puzzle and block to build up their problem solving skill

Show sympathetic understanding their needs Decrease social differences through planned activities Expect the child frequent absence due to hospitalization Probably need individual education plan Invite the Kaityn and Kianne participate fully in all activities

such as cooperative games, circle time and story time Support Kaitlyn and Kianne to be less dependent

More Practical Support

Community Resources

http://www.rowancountync.gov/GOVERNMENT/Departments/HealthDepartment/CommunityResources.aspx

Cystic Fibrosis Canadahttp://www.cysticfibrosis.ca/en/index.php

- one of top three charitable organizations. In 2012-2013, $7.5 million are invested in innovative research and clinical care

Mission: helps people with Cystic Fibrosis funds research towards the goal of a cure or control for cystic

fibrosis supports high quality Cystic Fibrosis care promotes public awareness of cystic fibrosis raises and allocates funds for these purposes

New born screening program Support parents and families how to live with people with

Cystic Fibrosis provide a good network to support medical treatment

Goal: improve quality of life for patient with Cystic Fibrosis through research on Cystic Fibrosis Therapy discovery Bringing discoveries to the clinic Therapy delivery and evaluation Early detection, intervention and prevention Training and education of CF professionals and families Management and exploration of the 

Cystic Fibrosis Mutation Database

THE HOSPITAL FOR SICK CHILDRENCystic Fibrosis Centre

www.sickkids.ca/Centres/Cystic-Fibrosis-Centre/

Cystic Fibrosis Canada 

New Born Screening and Social Support2221 Yonge Street, Suite 601 Toronto, Ontario, M4S 2B4 Telephone: 416-485-9149

1-800-378-2233 (Toll free from Canada only) Fax: 416-485-0960 / 416-485-5707 E-mail/Webmaster: info@cysticfibrosis.ca   

THE HOSPITAL FOR SICK CHILDREN

Cystic Fibrosis Centre555 University AvenueToronto, ON M5G 1X8Nurse Coordinator: Louise TaylorClinic: 416-813-5826

The Ministry of Health and Long-Term Care is working to establish a patient-focused, results-driven, integrated and sustainable publicly funded health system. Its plan for building a sustainable public health care system in Ontario is based on helping people stay healthy, delivering good care when people need it, and protecting the health system for future generations.

Ontario Government is a great support such as a varity of drug plan program and financial aid to patients. All services are provided to residents of Ontario.

Ministry of Health http://www.health.gov.on.ca/

North York General Hospital Genetic CounsellingGenetics Program4001 Leslie StreetToronto, Ontario M2K 1E1Tel: 416-756-6345

Ministry of HealthSpecial Drug Plan cover full cost of out-patient drugs used in the treatment of

specific conditions such as CFTel:1-866-532-3161 Web site: http://www.health.gov.on.ca/en/public/programs/drugs/programs/ sdp.aspx

Nutritional Supplements

The Hospital for Sick Children Certain enzymes vitamins and nutritional supplements are

covered Tel: 416-813-5294Web site: http://www.specialtyfoodshop.com

Drug Plan

Ministry of HealthAssisted Devices Program Pay up 75% to 100% for equipment for qualified individual Tel: 416-327-8804http://www.health.gov.on.ca/english/public/program/adp/adp_mn.html

http://www.health.gov.on.ca/english/public/pub/adp/oxygen.html

Equipment and Oxygen

Assistance for Children with Severe Disabilities program If the child has CF, the parent/guardian may be eligible for the

ACSD Program. http://www.children.gov.on.ca/htdocs/English/topics/specialneeds/disabilities/index.aspx

Jennifer Ashleigh Foundation Improve quality of life for serious ill children and their family provides financial support for costs surrounding a child's (an

individual under twenty-one years of age) illness. Location: 10800 Concession 5, Uxbridge, ON L9P 1R1

Tel: 905-852-1799 Web site: http://www.jenniferashleighfoundation.ca

Financial Assistance

Referenceshttp://www.cysticfibrosis.ca/assets/files/pdf/TheGuide_Resources_CF_2009_E.pdf

http://www.cysticfibrosis.ca/en/index.php

http://www.cysticfibrosistoronto.ca/about-us/host-your-own-eventv

http://www.cfeducation.ca/en/resourcelinks.aspx

http://www.cff.org/LivingWithCF/StayingHealthy/

http://www.cff.org/LivingWithCF/StayingHealthy/#Germs

http://www.cftrust.org.uk/media/82306/FS_Prescription_Charges_Mar_12.pdf

http://www.nhlbi.nih.gov/health/health-topics/topics/cf/treatment.html

http://cystic-fibrosis.emedtv.com/cystic-fibrosis/treatment-for-cystic-fibrosis.html

http://www.cff.org/LivingWithCF/AtSchool/TeachersGuide/

http://www.ncbi.nlm.nih.gov/pubmed/7226733

http://www.gosh.nhs.uk/medical-conditions/clinical-specialties/cystic-fibrosis-information-for-parents-and-visitors/services/dietetic-services/

http://www.bioxplorer.com/azoospermia-and-cystic-fibrosis/

http://www.cysticfibrosis.ca/assets/files/pdf/cystic_fibrosis_in_canadae.pdf

http://www.rowancountync.gov/GOVERNMENT/Departments/HealthDepartment/CommunityResources.aspx

http://oppforall.com/wp-content/uploads/2012/12/Early-Childhood-Education-1.jpg

http://www.bartsandthelondoncharity.org.uk/Page/Norton-Rose

http://www.universitiesonline.net/wp-content/uploads/2012/10/medical-assistant.jpg

Images