Cystic fibrosis (CF) is a time consuming and, at times, complex disease to manage, requiring a high level of collaboration between patients, families and health care professionals.
Self-management is a process whereby patients feel that they are empowered to be in charge of their physical and mental health. Collaboration is the process of two or more people working together to achieve something successfully. The management of CF requires a combination of both of these processes.
Successful self-management requires the following attributes:
- Knowledge of CF and how it specifically impacts you
This is also referred to as health literacy, or the capacity to obtain, process and understand basic health information and services to make appropriate health decisions. Research indicates that 60% of Australians have low health literacy which correlates to poorer health outcomes. To improve your health literacy:
- Ask questions and/or encourage your child to ask questions. This may be difficult at first, however, it becomes easier and health professionals like to see that you’re engaged.
- Write useful information down and prepare questions beforehand.
- Repeat information back to your health professional to clarify.
- Be honest. If you’re not going to do a specific treatment, then say so and they will adjust your treatment plan.
- Have another adult with you if you need extra support or just someone to remember what questions to ask.
- Ability to follow a treatment or care plan
There are a number of issues including motivation, low mood and busyness that affect your ability to stay on track with treatment plans. If you’re struggling, talk to your CF care team about setting some goals. Our Homecare Worker service can be a great program to assist with motivation and staying on track with treatment.
- Actively collaborate and share in the decision-making process with your care team
Be confident to say how much you can manage and if you need extra help.
- Manage and monitor signs and symptoms
Know your own body, speak to someone if you’re not sure, and track and adjust treatment as necessary.
- Manage the impact of CF on your physical, emotional and social life
Research indicates that people with CF and their caregivers have 2-3 times greater levels of anxiety, particularly at times of exacerbations or when undergoing medical procedures. Anxiety at these times is normal, however if issues persist you could start by speaking with someone in your respiratory team, your GP or someone here at Cystic Fibrosis WA (CFWA).
- Adopt lifestyles that promote health
Easier said than done! Try and stay active as much as possible (join a gym, sports team or join in activities you enjoy, such as hiking), stay connected to family and friends, eat well for your body, find hobbies and do things that make you happy. Here are some websites with useful information:
- CFFit– exercise resources
- CFFood– nutrition resources
- CF Fitness by the UK Trust have some video demonstrations on exercises beneficial to people with CF
- Act Belong Commit
- Have confidence, access and the ability to use support services
We have a range of support services for both those with CF and their families. These include home and hospital support, financial subsidies, equipment loan and support, advocacy, education, regional support, member events, counselling and a range of information resources. Visit www.cfwa.org.au for more information on our services.
Other support organisations can also be found on our website here: www.cfwa.org.au/what-we-offer/counselling-support/
Article from RED Magazine, Edition 1, 2018.