Angela Ma

ECEP233-061

Professor: Lisa McCaie

April 5, 2013

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

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

An error in salt and water exchange in some cells affect

sweat glands

May be more prone to sinusitis, hay fever, arthritis,

diabetes, heart strain and cirrhosis of the liver

Approx. 1 in 3,800 children in Canada has CF

No cure exists, shorter life span

In 1960, most children with CF did not live long

enough to kindergarten

Nowadays, average live to 30-year-oldhttp://www.youtube.com/watch?v=g17RmLOe4gUC

Facts 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

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

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.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.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.

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

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.

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

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

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-

Enzymes-Sports.pdf

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

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

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

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’shealth 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

Spend time to talk to children about Kaityln and Kiannewith special need . Tell children Kaityln and Kiannesometimes 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.

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

-

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

- 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

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

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

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

- 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

Cystic Fibrosis Canada

New Born Screening and Social Support

2221 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 Centre

555 University Avenue

Toronto, ON M5G 1X8

Nurse Coordinator: Louise Taylor

Clinic: 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.

North York General Hospital

Genetic Counselling

Genetics Program

4001 Leslie Street

Toronto, Ontario M2K 1E1

Tel: 416-756-6345

Ministry of Health

Special Drug Plan

cover full cost of out-patient drugs used in the treatment of

specific conditions such as CF

Tel: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

Ministry of Health

Assisted 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

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

http://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