Raising a child with CF can bring many questions, challenges and milestones along the way. As your child grows, CF may impact different aspects of daily life, from treatments and nutrition to school, wellbeing and family routines. At CFWA, we are here to support you and your family with and a range of services to help along the journey.
Please get in touch with our Services team via email services@cfwa.org.au or on 08 6224 4100 if you would like to know more about our services and support.
Alternatively, join our community here, and we will be in touch.
Family Services
At CFWA, we have a range of services to support a family managing CF. Support can assist the child with CF, parents and siblings.
- In home support including airway clearance and exercise routines
- Short term cleaning and respite
- Assistance with routines, behaviour and emotional support
- Psychosocial support
- Peer connection
- Financial support
- Resources & information
Read our Services for Families Flyer for more information.
Airway Clearance & Exercise
Airway clearance is a daily treatment needed to help keep lungs healthy. It helps loosen and move thick, sticky mucus out of your child’s lungs. It is usually started as soon as your child is diagnosed with CF and continues twice a day on an ongoing basis, even when your child seems well, because they help prevent mucus from building up over time. During coughs, colds or infections, airway clearance may need to happen more often. Toddlers and young children can be particularly challenging when it comes to airway clearance, which is why it is so important to create a good routine from a young age.
Exercise is also a key part of CF treatment, with benefits to lung function, strength and fitness levels.
To read more about airway clearance for children, have a read of the following factsheets:
Community Support Worker Program
In WA we have a Community Support Worker (CSW) program which enables you to receive regular home visits to support you and your child with airway clearance and/or exercise routines. Our CSWs receive intensive training by CFWA’s Services Team to provide them with the skills and knowledge they need to supervise treatments safely and effectively.
Practical home support including help around the house, as well as short term respite, is also available for families experiencing an acute change in circumstances. This may be the birth of a new baby or injury/illness. This service is available for anyone with CF and can be accessed by referral from your CF team or self-referral.
Nutrition
Normal growth and development are the main nutritional goals for your child. Better nutritional status in childhood is associated with improved lung function, immunity to help fight infections, mood and wellbeing, weight stability, adult height and fewer complications associated with CF.
The team at Perth Children’s Hospital (PCH) will monitor your child’s weight and growth at clinic visits and the dietitian will provide tools and strategies aimed at keeping your child at an optimal nutritional status. Each child with CF will have individual dietary needs based on various factors such as symptoms, medications, gender, age, weight, height and physical activity levels.
We cover this topic in detail on our Nutrition for Children page.
Medications & Procedures
Having CF means your child will be on lots of different medications. Common medications include enzymes, bronchodilators, mucolytics, antibiotics, anti-inflammatories, salt and vitamins. These medications may be given orally, intravenously, inhaled through a nebuliser or other inhalation device.
For more detailed information about CF medications, check out our factsheets on:
Pill Swallowing
Learning to swallow tablets can be difficult for children. We have developed some resources to help families teach their child to swallow tablets. If you need support, we can also offer one-on-one assistance. Please reach out.
Procedures
There may be times where your child will need to undergo certain procedures.
We have the following factsheets available on some common procedures:
Infection Prevention
Thick, sticky mucus can build up in the lungs of people with CF, allowing germs to thrive and multiply and lead to infections. Germs can spread either by direct (person-to-person) or indirect (surfaces) contact, or by air.
Fortunately, there are steps that people with CF, their families and caregivers can take to reduce the risk of germs including good hand hygiene, following cross-infection guidelines, avoiding people who are unwell and adhering to the National Immunisation Program.
Good Clean Hands is a 3-minute video suitable for children aged 3-8, all about hand washing and ways to minimise spreading germs.
Comorbidities & Complications
Some children with CF will experience co-morbidities or complications associated with having CF. These may include Cystic Fibrosis Related Diabetes (CFRD), incontinence, bone weakness and more.
Emotional & Behavioural Support
Parent Wellbeing
A diagnosis of CF in your child can place a significant emotional and physical burden on parents and can lead to feelings of anxiety and/or depression. It’s important to acknowledge these feelings and reach out to your GP if mental health challenges persist. Our services team can also provide support and referrals to further support as needed.
Child Wellbeing
If your child is struggling with any aspect of their mental wellbeing, you can get a referral to the social worker or psychologist at PCH. You can also contact our Services Team for supports for your child with CF and their siblings, including:
- Support around anxiety or emotional regulation
- Talking through worries or big feelings
- Using resources such as journals, creative activities, or sensory tools to help with expression and coping strategies
- Referral to further mental health support and/or OT
Useful External Resources
- KKind (Keeping Kids in No Distress) is a program at PCH designed to minimise trauma, anxiety and distress caused by illness, injury and being in hospital. Contact them to find out more information.
- The Magic Coat Hospital Adventure App has been developed specifically for PCH in response to calls from carers and patients for both user-friendly information about their surgery, and tools that could help kids manage anxiety before their procedure.
Neurodivergence & CF
There is growing evidence that attention deficit hyperactive disorder (ADHD) rates are higher in children with CF than in the general population and anecdotal evidence suggests autism spectrum disorder (ASD) rates are also higher in children with CF. If you think your child may be neurodiverse and are seeking support, have a read of our factsheet for further information.
CFWA also run a neurodivergence & CF parent support group. Click here for more information.
Clinic & Hospital
Clinic
Regular reviews are crucial for timely detection and prevention of complications. Routine reviews are conducted three monthly, but more frequent, tailored reviews may be needed when unwell.
The CF team have put together this factsheet, Monitoring Children with CF, which details the routine and annual reviews that families can expect.
They recommend bringing the following along to clinic appointments:
- List of required medications
- Physiotherapy equipment including a sachet of Hypertonic Saline and Ventolin if your child uses this for physiotherapy
- Sputum sample from the day of your clinic appointment
You should feel confident to speak with any member of the CF team about any questions or concerns you may have about your child’s health.
Hospital
Most children with CF will require a hospital admission at some stage. Although it may seem overwhelming, hospital admissions are essential to your child’s health and can deliver significant benefits.
CFWA offer support during admissions including:
- An inpatient Hospital Bag with lots of age-appropriate, fun items delivered by a member of the CFWA services team. Let us know when you’re in.
- Hospital Snack Packs are available on the ward. Please ask a nurse to receive yours.
- Travel and parking subsidy for hospital appointments and admissions.
If you are preparing for your child’s first admission you might like to read the following factsheet:
Useful External Resources
- At the Hospital: Helping My Child Cope (KKIND)
- At the Hospital: Helping My Teen Cope (KKIND)
- Helping My Child Cope After Hospital: What Parents and Caregivers Can Do (KKIND)
- CF Milestones by Age (CFRise)
Sputum Samples
Children with CF should provide a sputum sample 4 times a year. These samples help detect and identify bacteria, viruses and fungi that may be found in your child’s lungs and allows for best treatment. Children on modulator drugs still grow bugs even without having lots of sputum, if any.
Our Year of the Frog collaborative project with PCH hopes to boost the number of families submitting regular sputum samples each year.
How to Catch Your Frogs is designed to help your child learn how to produce a sputum sample at home.
We Want Your Sputum is for older kids aged 12+ and encourages them to produce regular sputum samples.
Hospital Transition
Transition is the process of moving your child’s care from PCH to Sir Charles Gairdner Hospital (SCGH). The time at which your child transitions is a group decision made by you, your child and the medical team. It usually happens at 18 years of age, however it might happen earlier or later, depending on how ready your child is.
CFWA can assist with the process by offering information and support to both the individual transitioning and their parents. We have a transition support subsidy to help with the cost of attending hospital appointments or admissions by providing $50 for the first two visits to SCGH. We can also offer a transition care pack and support and guidance as needed. Further resources and information about the transition process is available here.
School & Daycare
Our CFSmart education program is a free resource for teachers and educators to improve understanding of CF in an education setting. It includes free e-Learning modules as well as downloadable resources. Our Education Coordinator can work with parents to develop a CF Action Plan with detailed information about the individual needs of your child at school or daycare. We can also provide face-to-face education to the school/daycare if required.
School Resources
Factsheets for teachers and educators are available on the CFSmart website.
Travel
Travel takes planning, however travelling with a child with CF can involve extra organisation to ensure the trip goes smoothly. Our travelling with Children factsheet provides information on reciprocal health care agreements, travel insurance, health preparation, medications, eating, drinking and cross-infection, links to useful resources and suggestions for travel activities.
Useful External Resources