Although you might feel quite isolated following your baby’s diagnosis, there are many resources offering everything from newborn parenting advice to emotional and psychological help. Don’t be too proud to accept people’s support. They often want to help in any way they can.
Your local CFA organisation and/or support group are great places to start.
Cystic fibrosis is usually managed by a hospital-based multidisciplinary team that includes you, your family and your child with CF.
Your hospital-based multidisciplinary team might include:
Your child’s care might also involve these specialists:
Locally, your support team is usually:
This is your first port of call. There are CFA organisations in each State and territory of Australia that provide information support services for families of newly diagnosed children. These services may vary from State to State but can include:
To contact your State organisation, visit https://www.cysticfibrosis.org.au/ and choose your State from the dropdown menu.
If you feel that you’re struggling, seek professional help. Medicare will subsidise up to 10 sessions of Cognitive Behavioural Therapy (talking therapy) each year. Book a double appointment with your GP to get a mental health plan and medical referral to a registered psychologist.
A non-government, not-for-profit, Australia-wide network dedicated to supporting family carers.
Visit the national body to find your local office to find out how to contact your local body for advice, information, services and help.
www.carersaustralia.com.au
A free app that walks parents through the ages and stages from 0-2 years, normalising common emotional and partner experiences. A Smiling Mind and beyondblue collaboration.
A web resource covering everything from bonding with your baby to spotting the signs of anxiety and depression. To contact the beyondblue support service, phone 1300 22 4636.
https://healthyfamilies.beyondblue.org.au/pregnancy-and-new-parents
A web resource that offers tips on how to look after the wellbeing of your family – including you.
To contact the beyondblue support service, phone 1300 22 4636.
https://healthyfamilies.beyondblue.org.au/seeking-support/helping-yourself-and-others
Home visits from a CF-trained nurse and physio for checkups and to help with physio. The Victorian and Australian Governments jointly fund this service, which is not available in all States.
The RDNS helpline (1300 33 44 55) operates 24/7.
http://www.rdns.com.au/services-we-provide/home-nursing-services/
Visit the Australian Psychological Society website and Click on Find a Psychologist for contact details of a practitioner near you.
https://www.psychology.org.au
There are several excellent websites and organisations that offer practical advice on dealing with various aspects of mental health.
A Cystic Fibrosis Foundation (US) guide to depression and anxiety and what to do if you suffer from either or both.
Click on Living with CF, then Emotional Wellness, then Depression, Anxiety and Cystic Fibrosis, What the guidelines mean for you.
https://www.cff.org/
A fact sheet about chronic illnesses containing information that is relevant to families with a child who has CF.
Click on Get support, then choose Information resources and Click on Our catalogue.
For printed copies of fact sheets, email beyondblue@bspg.com.au or call 1300 464 181.
To contact the beyondblue support service, phone 1300 22 4636.
https://www.beyondblue.org.au
Information on topics including stress, depression, panic attacks and loss/grief. Click on Get Help, then choose Self Help Tools to download the topic you are interested in. Lifeline offers 24/7 access to crisis support on 13 11 14.
https://www.lifeline.org.au/
Relaxation, sleep, anxiety and pain apps for adults and children.
www.withandrewjohnson.com
Resources and apps to help you learn and practise mindfulness.
http://smilingmind.com.au
An online ‘therapist’ program developed at the National Institute for Mental Health Research that may help with mood and unhelpful thoughts.
www.moodgym.anu.edu.au
A four-part web series for new dads, plus a two-minute stress test and tips on how to nail the ‘dad’ thing. To contact the beyondblue support service, phone 1300 22 4636.
https://healthyfamilies.beyondblue.org.au/pregnancy-and-new-parents/dadvice-for-new-dads
A unique online resource designed to help men with their mental health.
http://mantherapy.org/
A self-help resource offering information about the causes and the signs of stress in men, useful strategies and contact details for getting help. Scroll down below the list of topics, go to Asking for Help and Click on Tool Kit: Men Experiencing Difficult Times to download the PDF file.
https://www.lifeline.org.au/Get-Help/Facts-and-Information
‘More than 300,000 of Australia’s carers are young carers, with 150,000 under 18*. The person they care for may be a parent, partner, sibling, their own child, relative or friend.’ – Carers Australia *ABS 2009, SDAC report
A booklet offering practical ideas sourced from parents and young carers.
Click on Resources, then key Children into Keywords and choose Publications in the Filter window.
www.carersaustralia.com.au
A not-for-profit website for parents and children, presenting kids’ health issues in an engaging way – including quizzes on the digestive and respiratory systems.
www.kidshealth.org
Check out Young Sibs on this site for siblings of children and adults with chronic conditions. This section is written for young siblings, recommends books and shares stories and ideas from other children.
www.siblingsaustralia.org.au
An interactive site for children aged five to 25 and offering counselling by phone, email or webchat. Kids Helpline provides free 24/7 practical help and emotional support.
www.kidshelpline.com.au
An online mental health service for young people that includes information, guides, apps and forums for a range of issues, including physical and mental health.
http://au.reachout.com/
The Australian Counselling Association is Australia’s largest single registration body for counsellors and psychotherapists, with more than 4100 members. To find a registered counsellor, visit http://www.theaca.net.au/ and Click on Find a Counsellor.
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