LWWCF Insights: Managing Daily Care (Adherence)
Adherence – What Does It Mean?
One thing that is key to living well with CF is adherence. Many people living with CF prefer the terms “managing treatment” or “managing daily care” but the term “adherence” is most commonly used by your health care team. Adherence essentially means how well we stick to something. In the context of living with CF, it describes how well we stick to the treatments we are recommended by our healthcare team (including medication, physiotherapy, dietary treatments, exercise, etc.) and follow-up appointments.
“Having my questions about my treatment answered by my CF team helped me to understand what I need to do and why.”– Young adult with CF
Adherence is important because the more you stick to your prescribed treatments and care:
- The better your treatment works
- The better your health is now and will be in the future
- The better you will feel, both physically and about yourself
- The better you can support changes to your health and wellbeing
- The more you are able to do in life and achieve the things you want to!
Although adherence is really important, we know that adhering to all CF treatments can be really hard, especially when you feel well, treatments are complicated or have side effects, or when life gets busy and other priorities take over. Knowing how best to support adherence can be really challenging for carers and family too. The good news is there are loads of ways you can maximise your adherence and live your best life.
How Do I Maximise Adherence?
The following steps aim to support you to make changes in any area of life, or reach any goal you have, and most importantly to Live Well. You can use the Living Well Worksheet to help guide you as you work through these steps.
1. Know you are in control
While you may not be in control of what treatments you need to do, you are in control of your choices, goals, behaviours and actions in terms of your adherence to managing daily care and how you Live Well with CF.
2. Identify what your adherence is like now
- It is important to understand what your adherence is like now if you want to see what changes you can make to Live Well.
- Ask yourself: Do you understand what treatments you need to do, and why? How much treatment are you managing now? What is helping you? What are your needs? What do you want to change?
3. Make a plan
If you feel you want to improve your adherence to managing daily care, it is time to make a plan! To do this:
- Identify specific and clear goals for your treatments, care and adherence so you have something to work towards. Identify your motivations to improve adherence (this helps you to keep going when things get tough).
- Finally, identify strategies that can help you to improve adherence. These may be things you have used before or new strategies. Take a look at the list of strategies below for some suggestions to help you get started.
4. Put your plan into action
- Set yourself a time frame so you know how long you will try your plan before reviewing it.
- Remember that change doesn’t happen overnight, so give yourself time.
- Then just go for it, do what you have planned to do and have fun!
Review and evaluate what is working well, what you need to change and try again.
Strategies to Maximise Adherence
- Give yourself a break. Managing CF treatment is hard. It is ok not to be perfect, you just need to do your best and know that you are worth it!
- Know your treatment plan. Ask your healthcare team for a written treatment plan, or write one down yourself, so you know what you need to do and when you need to do it.
- Information is power. There is no such thing as a stupid question. Make sure you don’t have any unanswered questions about your treatment or adherence so you know what you are doing and why.
- Use your strengths and strategies you have worked for you before. Think about previous times that you have overcome challenges to successfully manage treatment so you believe that you can do it!
- Create routine. Do treatment at the same time each day so you don’t have to think about it, and it becomes a part of everyday life.
- Make it less hard. It is almost impossible to make treatment fun, but you can do something that you enjoy while you are doing treatment to make it less hard (e.g. watch your favourite show or connect with friends).
- Monitor the challenges. Record any challenges that stop you from doing treatment (e.g. not understanding what you need to do, lack of time, not feeling well, managing other commitments, etc) so you can work out how to address these.
- Monitor the wins. Record the treatment you do every day and goals you achieve to keep you motivated. Every treatment you do is a win.
- Celebrate. Reward yourself regularly for the treatments you do (for example, say yes to that pair of shoes or game you’ve wanted for ages) and celebrate with others too. Why not throw yourself an adherence party?!
- Use your support network. No one is an island – you are surrounded by people who are there to help. Family and friends can play a huge role in reminding you about treatment, supporting you and helping to identify and address challenges you encounter – and by celebrating with you too!
- Your healthcare team are key. Aside from your family and friends (and yourself of course), your (or your loved one’s) healthcare team are the people most invested in your health and wellbeing, including your adherence to daily care. Have regular conversations with them about your health, treatment, care, and any questions you have, as well as your needs, goals and priorities. This way they can provide any information and support to help you to manage your treatment, care and life in the way that works for you best.
This resource was funded and facilitated by Vertex Pharmaceuticals (Australia) and developed independently by The Med Collective through collaboration with members of the LWWCF initiative Steering Group. We wish to acknowledge the content contribution and intellectual property of Dr Lucy Holland and Maggie Harrigan, and most importantly, the consumer and health professional experts who shared their experience and expertise to develop this work.
The resources in the LWWCF website and resource directory should be used in consultation with your health care practitioner or mental health professional.
References used to develop this LWWCF Insights Resource:
1. Faint, N. R., Staton, J. M., Stick, S. M., Foster, J. M., & Schultz, A. (2017). Investigating self‐efficacy, disease knowledge and adherence to treatment in adolescents with cystic fibrosis. Journal of paediatrics and child health, 53(5), 488-493. 2. Gardner, A. J., Gray, A. L., Self, S., & Wagener, J. S. (2017). Strengthening care teams to improve adherence in cystic fibrosis: A qualitative practice assessment and quality improvement initiative. Patient Prefer Adherence, 11, 761–767. https://doi.org/10.2147/ppa. S130439. 3. Holland, L. R., Hilton, J., Cookson, K., Heinsch, M., Gilligan, & Wark, P. (2022). Understanding motivation for Australian adolescents and young adults with cystic fibrosis: modifyable factors to support self-management. Health and Social Care in the Community, e2712-e2723. 4. Nicolais, C. J., Bernstein, R., Saez-Flores, E., McLean, K. A., Riekert, K. A., & Quittner, A. L. (2019). Identifying factors that facilitate treatment adherence in cystic fibrosis: qualitative analyses of interviews with parents and adolescents. Journal of clinical psychology in medical settings, 26, 530-540.