1. Angela Ma
ECEP233-061
Professor: Lisa McCaie
April 5, 2013
2. 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.
3. 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/
4. 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-old
http://www.youtube.com/watch?v=g17RmLOe4gUC
Facts of CF
5. 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
6. 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
7. 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
9. 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
10. 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
12. Pediatrician
– specialize in child development and medical care.
Physician
– makes medical decision, prescribe medication and lead
caring team
– update current research, follow treatment guidelines
http://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
13. 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.
14. 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
15. 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
17. 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
18. 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
19.
20. 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
21. 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
22. 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
23. 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
24. 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.
25. 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
26. 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
27. - 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
28. 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
29. 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
31. - 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
32. 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
33. 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
34. 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.
35. North York General Hospital
Genetic Counselling
Genetics Program
4001 Leslie Street
Toronto, Ontario M2K 1E1
Tel: 416-756-6345
36. 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: 416-813-5294
Web site: http://www.specialtyfoodshop.com
37. Ministry of Health
Assisted Devices Program
Pay up 75% to 100% for equipment for qualified individual
Tel: 416-327-8804
http://www.health.gov.on.ca/english/public/program/adp/adp_mn.html
http://www.health.gov.on.ca/english/public/pub/adp/oxygen.html
38. 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/disabiliti
es/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
