FAQ

How does Breath4CF work and How do I Apply?

Breath4CF is a fund administered by CFNZ that aims to help PWCF to fund exercise-related activities. It is administered by CFNZ. Information on the fund is available on the CFNZ website and forms can be downloaded from the site –  click here for more information.  Details of where to send the application are on the form, and there is a one page guideline on what can be applied for and what would be excluded.

How does Carer Support work?

The carer support programme is funded by the Ministry of Health and is administered by the local District Health Board, based upon criteria set by the Ministry of Health. Doctors make assessments, according to the criteria, which is based on the health status of the child. The CFNZ fieldworker can assist parents with the application process to facilitate the administration.

Why is it Important for PWCF to be Seated Apart at Clinics?

CF research over the past 10 years has definitively established that cross-infection is possible between PWCF.  For PWCF attending the CF outpatient’s clinic at Starship hospital there is a protocol around wearing a mask from the carpark until inside the allocated clinic room where the PWCF will be seen by various members of the CF team.  If the PWCF leaves their room, they must put their mask back on and not take it off until they are back in the car to go home.  Rooms are cleaned and ‘aired’ in-between use to ensure cross infection risk is minimised.

CF clinics at Greenlane hospital for adult CF patients have masks as optional if the PWCF chooses to wear one, but they do have an allocated room for each PWCF attending the clinic, and cleaning between patients.

If you have any questions on possible cross infection risks it is best to discuss your concerns with the CF nurse specialist.

Am I eligible for Travel Assistance to attend Clinic Appointments, or Inpatient Hospitalizations?

If you are a Community Card holder and travel more than:

– 25 km one way per visit (for a child)

– 80 km one way per visit (for an adult)

Adults who do not have a Community Service Card:

– 350 km one way per visit

If you meet any of the above criteria then you need to be registered on the National travel assistance scheme – this is done by your base hospital.  On completion of a claim form you will receive 20 cents per km.

How do I handle my child’s refusal to do physiotherapy or take medication?

Look at how your child and you are responding to the situation and try something different.

Ideas:

  • Respond with empathy, rather than frustration or anger, i.e. “It’s a bummer”, “This is hard”, “I understand”. This helps to bring you both into the relationship.
  • Try positive reinforcement when your child does comply, i.e. “You must feel proud of yourself”. This will lift your child’s concept of themselves and help them feel OK about their treatments.

Reasons for low compliance in older children:

  • they may not understand the reason for all their medications
  • they don’t want to be different from their friends, and may be teased or bullied
  • they may feel isolated (e.g. CF may sometimes affect their participation in sport)
  • some have low self-esteem and may be suffering from anxiety over their health
  • they may feel like their health is unpredictable and frightening and they are expected to be able to cope with the stress and ‘know better.

Helping older children cope and actively participate in their care

Some strategies that others have found effective:

Education

Teenagers need individualised education to understand their disease and medications, why they are necessary and when to take them.

  • Make sure your child understands each medication and what it does for their health and body.
  • Next time you are at clinic, ask for any information on medications and treatments that are specific to your child.

Social support

Social support is vital for older children.  They feel better when they can share with others who have the same condition.  Unfortunately the risk of cross-infection affects PWCF socialising with other PWCF.  Parents may have concerns about facebook and other social networking, but when older children feel isolated, facebook could be the best medicine.  If your older child can’t find a social network that fits their needs (CFNZ have several they may like to join), encourage them to start a group.  You may see your teen receiving moral support from peers and providing if for others as well.

Support from Mum and Dad

Try using tools your children already use, such as text messaging, to send supportive reminders.  Also, be realistic about compliance and monitor it in a non-judgmental way.  Even though your child wants to be independent, recognise that just being a teenager makes non-compliance very likely.  So, don’t leave it all up to them.

 

Do you have any questions you would like answered by CF Auckland?  Please contact our branch co-ordinator Kath auckadmin@cfnz.org.nz.