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Cystic fibrosis

Information on how education and care services provide proactive and reactive management for children and young people with cystic fibrosis. 

Health support for cystic fibrosis

The cystic fibrosis in education and care procedure (under development) will describe how education and care services support children diagnosed with cystic fibrosis.  

Cystic fibrosis is an inherited genetic condition affecting the lungs, digestive system and sweat glands. It is the most common life-threatening condition affecting Australian children. Recurring bouts of illness and the necessity to maintain a strict health routine can interfere with education. 

Education and care services must take additional precautions when there is more than one person attending that has cystic fibrosis. People with cystic fibrosis cannot be within two meters of each other to prevent the spread of infections that only people with cystic fibrosis can get. Cystic fibrosis is not contagious.

Cystic Fibrosis organisations in Australia provide support and services to people with Cystic Fibrosis (CF) and their carers and families. This is complemented by a commitment to research and a quality improvement program focussing on improved clinical care for people with CF. Their website provides current best practice information and resources about CF.

Care plans

The cystic fibrosis care plan HSP360 (DOC 221KB) is completed by a health professional in consultation with parents or legal guardians for children diagnosed with cystic fibrosis.  

Health support agreement

Where a child or young person has cystic fibrosis a health support agreement HSP120 (DOC 243KB) and safety and risk management plan HSP121 (DOC 147KB) should be completed. These are completed by the parent and education or care service to document specific risk minimisation strategies, individualised management and treatment for the child in the context of the education or care service. 

The Health Support Agreement should clearly identify cultural, spiritual and language needs.

Medication agreement

Where medication is prescribed and required to be administered during attendance in an education or care service a medication agreement HSP151 (DOC 142KB) must be completed by a health professional. 

Refer to medication management for further information.

First aid

All education and care staff are required to provide first aid measures following any care plan or support agreement and contacting emergency services if required.

Individual first aid plan

An individual first aid plan HSP124 (DOC 167KB) is completed by the health professional where the first aid response is NOT the standard first aid response for that health condition.

Training and education

EDMed Professional Development provides training for education and care services to support children with a diverse range of illnesses and develop strategies for a smooth transition and integration back to school. To request a free face-to-face EDMed professional development session complete the online EDMed enquiry form.

The Ronald McDonald Learning Program is a national program helping children with serious illness catch up on their missed education following hospital stays and absences from education services. For more information on the learning program complete the online request form.

Cystic Fibrosis Australia (CFA) is the peak consumer body for people living with cystic fibrosis and may be able to provide advice to education and care services supporting children and young people with cystic fibrosis. 

The Women’s and Children’s Hospital has education resources specifically targeted for children with Cystic Fibrosis (CF) and their families. Children with CF often need to follow a high energy diet and require salt supplementation. They may also need to be on pancreatic enzyme replacement therapy (PERT) to help them digest and absorb food. Children with CF should see a dietitian who specialises in the area regularly to monitor their growth and give individualised dietary advice.

Resources 

Care plans

HSP360 Cystic fibrosis care plan (DOC 221KB)

Health support agreement

First aid 

HSP154 Individual first aid plan (DOC 190KB)

Planning and management tools

Contact

Disability and complex needs team

Phone: 8226 3620
Email: education.health [at] sa.gov.au