Growing up With Cystic Fibrosis

Welcome to Current and Emerging Roles in Physiotherapy Practice. This page is being developed by participants of a project to populate the Spinal Cord Injury section of Physiopedia. 

• Please do not edit unless you are involved in this project, but please come back in the near future to check out new information!!  
• If you would like to get involved in this project and earn accreditation for your contributions, please get in touch!

Original Editor - Your name will be added here if you created the original content for this page.

Top Contributors - Laura Midori Wickham, Kim Jackson, Vidya Acharya, 127.0.0.1, Michelle Lee, Rachael Lowe, WikiSysop, Adam Vallely Farrell and Naomi O'Reilly  

WELCOME

Introduction

Welcome to our information page for all people caring for individuals living with cystic fibrosis (CF). As we live in a world of technology, there are many CF websites available for public access on the Internet. Thus, it is our objective to provide parents and carers with a learning resource and developmental tool to ease concerns of _____. We aim to achieve this through discussions of six important aspects of living with CF, thereby promoting self-efficacy towards assisting in the implementation of necessary changes or provide continued support.

Our mission is to advance the knowledge and participation among all readers to be well informed to assist individuals living with cystic fibrosis.

Our vision is that all readers will be confident....

Please feel free to click on the video below to become familiar with the content our webpage has to offer and to learn how to navigate the site.

Video to come...

Learning Outcomes

After exploring this wiki page, the reader should be able to:

1. Review evidence of new and emerging treatments and or management of people with CF
   
2. Analyze the physiotherapist’s role through the transition from paediatric to adult services for individuals with CF - good depth
   
3. Gain insight on managing and caring for people with CF
   
4. To accurately justify and support the use of current physiotherapy treatments and management techniques for people who suffer from cystic fibrosis.
5. Better understand your condition (CF), how to manage it and how others can help you.
   
6. Compare the research substantiating new scientific evidence and treatments available in the paediatric cystic fibrosis field
7. Critically analyse the research supporting new and emerging scientific evidence and treatment available for patients with cystic fibrosis
8. Cope, aid and problem solve emotional and psychological problems themselves or their children/patients may have as a result of living with cystic fibrosis.
9. Identify exercises to develop physical activity plans appropriate for the individual’s level of abilities.
   
   
   

PATHOPHYSIOLOGY OF CYSTIC FIBROSIS

K.F's content to come...

EMOTIONAL AND PSYCHOLOGICAL IMPACT

K.C's info to come...

PHYSIOTHERAPY TREATMENTS

T.C's info to come...

EXERCISE

It is important to understand that not all physical activity is considered exercise. Be aware of the difference between exercise and physical activity.

                           

We encourage you to make a conscious effort to engage in planned activities regularly to become an exerciser!

Exercise Prescription

Recently, there has been a significant amount of research regarding the use of exercise as “medicine” to benefit individuals living with cystic fibrosis. Such studies are important for determining the physical capacity at which these individuals are capable of enduring. Furthermore, an accumulation and examination of the results allows for clinicians to determine appropriate guidelines specifically designed for individuals with cystic fibrosis.

Swisher et al. developed specific exercise prescription for individuals of all ages living with cystic fibrosis, which can be viewed in the table below.

EMERGING RESEARCH

A.M's info to come...

SELF-MANAGEMENT

D.B's info to come...

ACADEMIC INSTITUTION INVOLVEMENT

Starting School
Cystic fibrosis should not stop your child enjoying a full and rewarding school experience. Compromises may need to be found, and adjustments made, but working closely with the school and the CF tem will help to ensure that your child’s education is not limited by CF.

Questions to consider when looking for a school:

1. Does the school have experience with children with CF
2. Are there any other children with cystic fibrosis at the school
3. My child has to take enzyme supplements with snacks and meals, what is your policy on this?
4. My child needs a high fat snack between meals, how will this work with your healthy eating policy?
5. If my child needs to do physiotherapy exercises, would you be able to accommodate this?

Create an individual healthcare plan:

• Many schools have their own individual healthcare plan templates.
• Even when individual healthcare plans are not mandatory, it is a good common sense idea.
• Developed to help school staff to understand what a particular medical condition means for a child at school
• Should include information about CF, how it affects you child, treatment details, dietary needs, contact details.
• A healthcare plan template is available on the cystic fibrosis website- www.cysticfibrosis.org.uk

Communication

• Communication is key to ensuring children with CF are appropriately cared for.
• All relevant staff should know about your child's needs.
• Ensure the school keeps you informed about changes in your child's symptoms, missed creon doses etc.
• Decide how you want this communicated eg. communication books

Infection Risk

Coughs and colds

• Avoiding infection is a very common and valid worry.
• Risk can be minimised by encouraging effective infection control measures and asking staff to keep children with coughs and colds apart, where possible, from your child.

Environment

• Certain environments-mud, stagnant water, hate-that have fungi which can be harmful to children with CF
• This can impact on playing outdoors etc.
• Some minor practical adjustments can be made- teachers can ensure water is always fresh, the table is cleaned and dried every day and there is fresh sand for sand play.

Creon

• Schools have their own systems of storing and administering
• Ensure to communicate effectively with the school to decide what system will work for your child
• Getting creon dose right can be difficult, particularly when a child first starts school
• Ensure to keep in touch with the school about your child's eating habits and creon dose.
• Your child may be asked about their creon by other children. Speak to the school about whether you would like your child to take their creon in private. Many parents don’t want their child to feel that CF is something to be ashamed of so they don’t hide the treatment.
  

Diet

• Option of school meals or packed lunch
• The school can make the menu available to you and the CF dietitian will be able to help work out the creon doses
• Your child is likely to need other snacks during the day and this can be discussed with the school.

Attendance

• Many parents worry that their child will be penalised for absence
• Many schools have absence policies and place and rewards for 100% attendance and for children with CF it seems like they are setup to fail on this one
• Speak to the head teacher as they are most likely to be flexible on this
• Liaise with the school about the best arrangement for your child and their attendance
• Parents have said that sometimes it is difficult to get to school on time, particularly if their child is struggling with mucus and physiotherapy is taking longer. Schools are usually sympathetic about this and feel better that the child comes to school late rather than not at all.

TRANSITION FROM PAEDIATRIC TO ADULT CARE

Quotes from physio's to come...

REFERENCES

References will automatically be added here, see adding references tutorial.