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Supporting children and students with cystic fibrosis

On this page

This page outlines how education staff, care services, parents, guardians, and health professionals work together to manage a child or student with cystic fibrosis in education and care settings.

About 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. 

Health support plans and agreements

If the child or student has cystic fibrosis, the education or care service should refer to health support planning for children and students in education and care settings to ensure that the appropriate plans and agreements are in place. This is in addition to the cystic fibrosis-specific plans and agreements listed on this page. 

Care plan

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

Education and care staff who regularly engage with the child or student will need to know what is in the plan.

Emergency care and first aid procedures

An individual first aid plan – HSP124 (DOC 167KB) should be completed by the health professional where the first aid response is NOT the standard first aid response for cystic fibrosis.

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

Training for education and care staff

EDMed 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.

Training for parents and children

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 requires 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.

How parents and caregivers can help

Parents or guardians must:

  • notify the school, preschool or care service if their child has cystic fibrosis
  • complete health care plans and agreements with their health care professionals and provide them to the school, preschool or care service
  • provide required medication to the school, preschool or care service.

If a medication agreement is in place, parents and caregivers must fulfil the roles and responsibilities outlined on the medication management and care page.

How health professionals can help

Health professionals support schools, preschools, care services and families by helping to develop the care plan and any supporting medication and care agreements.

Disability advice and research

Phone: 8226 0515
Email: education.health [at] sa.gov.au