Resources
What is Cystic Fibrosis Screen Positive Inconclusive Diagnosis (CFSPID)?
Urinary incontinence and cystic fibrosis
Modulator Treatments for Cystic Fibrosis: Effectiveness and Value
Reducing the risk of infections for cystic fibrosis people in everyday life
Second-hand smoke and cystic fibrosis
Queensland Children’s Hospital – Parent Handouts
Resources created by the Occupational Therapy department at Queensland Children’s Hospital
CF Tips for Parents Handout – Daily routines and treatment
CF Tips for Parents Handout – Education
CF Tips for Parents Handout – Managing procedures and procedural anxiety
CF Tips for Parents Handout – Introducing new treatments and equipment
CF Tips for Parents Handout – Managing mealtimes
CF Tips for Parents Handout – Starting school or daycare
CF Tips for Parents Handout – Tablet Taking
Carers
Carers play a crucial role in our community—often without realising. For many people, looking after a loved one is ‘just what you do’. They are mums and dads, sons and daughters, brothers, sisters, grandparents, spouses, friends and neighbours.
The Carers (Recognition) Act 2008 defines a carer as:
“An individual who provides, in a non-contractual and unpaid capacity, ongoing care or assistance to another person who, because of disability, frailty, chronic illness or pain, requires assistance with everyday tasks.”
If you are the parent or partner of a person living with cystic fibrosis and you support them with management of their chronic illness and clinical adherence, then you may be eligible for carer allowance.
The Queensland Government has a list of support services for all carers, with some additional services specific to groups such as parents and grandparents, older and younger carers, and carers from culturally and linguistically diverse (CALD) backgrounds, a list of support service providers can be found here.
If you would like to speak confidentially to another cystic fibrosis parent or partner to share your lived experiences, please contact services to help you connect with the right person.
Useful Links
Carers
- https://www.qld.gov.au/community/support-for-carers/support-groups-for-carers
- https://www.dss.gov.au/our-responsibilities/disability-and-carers/benefits-payments/carer-allowance/guide-to-the-list-of-recognised-disabilities
COVID-19 information
- https://www.qld.gov.au/health/conditions/health-alerts/coronavirus-covid-19
- https://headtohealth.gov.au/
CF and COVID-19
- QCH – Supporting Kids & Families During COVID-19
- TPCH – COVID Update
- Adult CF Centre patient update letter (TPCH)
- Letter to the CF Community From the CF Centre Directors (CFA and Thoracic Society of Australia & NZ)
- Maintaining Good Nutrition for individuals with CF During COVID-19 (Sydney Children’s Hospital)
Children
- Birdie and the Virus Children’s Health Queensland have developed an education tool to help parents talk about covid 19 with small children.
- What is Coronavirus short film (PCH)
- What is Corona Virus: A Kids Guide (Government of WA, Child and Adolescent Health Service)
- My Name is Coronavirus (Mind Heart Kids)
- Time to Come in Bear: A short video for little ones to help explain social distancing in an age appropriate way.
- Hello Friends: A COVID-19 Special (Play School)
- Hand Washing and Germs short films (CFWA)
- The Adventures of Miss Messy Suzie McGoo (Nicholas Kelly, Maria Rohan)
- Getting Nosey about CF with Oli and Nush (Cystic Fibrosis Trust)
- The A to Z of cystic fibrosis l What is cystic fibrosis? (Cystic Fibrosis Trust)
- What is cystic fibrosis, exactly? (Cystic Fibrosis Trust)
Mental Health
- Mental Health and COVID-19 (Think Mental Health)
- Thrive Inside with Smiling Mind (Smiling Mind)
- https://mindspot.org.au/ latest mental health and well-being advice and tips
- Beyond Blue, 1800 512 348
- Lifeline, 0477 13 11 14 (text for a crisis supporter call back).
For all cystic fibrosis health concerns, please always speak first with your clinical team
