Building resilience for CF parents and caregivers
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This document was originally developed by the Cystic Fibrosis Foundation (CFF) and has been modified by Cystic Fibrosis Canada. To align with the Canadian context and terminology used in Canadian Healthcare this resource was revised in consultation with various Canadian CF social workers, nurses, and members of the CF community.
The Importance of Caring for the CF Caregiver
Living with cystic fibrosis or caring for someone with CF can be stressful. Sources of worry can include symptoms, treatments, costs, socializing with family and friends, managing finances or even daily activities (e.g., going to work/school). These stressors not only impact the person with CF, but their caregivers too and can negatively affect their mental health and well-being over time. In fact, people with chronic respiratory conditions and their caregivers face a greater risk of experiencing anxiety and depression¹. However, resilience is known to affect the way a condition progresses as well as its outcome²; the more resilient an individual is the more positive their state of mental health is³.
What is Resilience?
Resilience is the ability to adapt to difficult situations. It is a learned skill that often incorporates self-development/growth in the process. It can be built through self-care activities. These play an important role in effectively managing CF care by preventing stressors from becoming overwhelming and protecting caregivers from developing persistent symptoms of anxiety and depression.
What Resilience Means for CF Caregivers
People who face difficult life circumstances, such as caring for a loved one with a medical illness, commonly experience sadness and emotional pain. Resilience is not the absence of difficulties, but a capacity for personal strength. Building resilience means learning how to respond to stressful events and circumstances with useful thoughts and actions.
One way to think about stress and resilience is that they are like opposite ends of a scale. Even the smallest effort in caring for the caregiver can help tip the scale in the direction of resilience.
A caregiver may feel stressed for several reasons (included by not limited to):
- New CF diagnosis
- Completing treatments
- Lung infections
- Lung function tests and results
- Managing dietary needs
- Sputum culture results
- Hospitalizations
- Doing home IV antibiotics
- New feeding tube
- CF-related diabetes diagnosis
- Managing insurance
- Applying for benefits
- Starting school/university/a new job
When caregivers practice self-care, it sets a good example for the individual with CF. This is one of the best ways caregivers can teach individuals with CF to value their health and wellness, particularly as youth with CF move into adulthood.
Taking time for self-care is not selfish; it is necessary to help and care for others. It is often when practicing self-care seems the most challenging, that it is the most needed. Receiving help and support is a healthy and necessary part of managing the complexities of CF. Similar to how on a plane we put our own life vest on first, before assisting others.
Examples of Self Care
Physical
- Eat a healthy, balanced diet
- Get at least 7-8 hours of sleep each night
- Exercise a few times a week (brisk walking, jogging, biking, etc.)
- Limit screen time
- Get outdoors at least 30 minutes a day for fresh air and natural light
- Focus on preventive medical care in addition to CF care
Emotional
- Stay connected to supportive people
- Delegate tasks to others
- Ask for help before feeling overwhelmed
- Express emotions through healthy outlets
- Establish boundaries; say “no”
- Schedule time for fun and use humor
- Celebrate life milestones
- Use creative outlets
Spiritual
- Make time for quiet reflection
- Practice gratitude
- Keep a journal
- Attend a worship service
- Allow time for play and creativity
When caregivers care for their own physical, emotional, and spiritual needs, they build resilience and improve their overall mental health.
Developing ways to care for oneself is an ongoing process that may change with the stressors faced. For example, when there is a new CF complication or change in health status, self-care activities may need to be increased to counter-balance the negative impact of stress.
Mindset Adjustments
- Learn to recognize and stop negative thinking patterns
- Be aware of your strengths
- Taking a step back in the face of negative emotions and questioning if they’re proportional to the threat they face
- Find positive steps you can take to solve problems
- Be conscious of how you respond to stress, to then develop strategies
- When your mind starts thinking pessimistically, make yourself think best care scenario
- Try not to make overgeneralizations
Most pediatric CF clinics offer a brief screening process for the parents/caregivers to help determine if they may be experiencing overstress. Studies have shown that even the act of performing a screening itself is beneficial for the mental health of pwCF and caregivers, as it increases psycho-education⁴. A CF social worker or psychologist, therapist, or primary care physician are a few examples of skilled professionals who can help caregivers develop a plan for self-care. Build resilience by caring for the caregiver!
ADDITIONAL CF CAREGIVER RESOURCES
For more information, visit the following links.
https://www.cff.org/support/coping-while-caring-someone-cystic-fibrosis
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- Quittner, A.L., Goldbeck, L., Abbott, J., Duff, A., Lambrecht, P., Solé, A., Tibosch, M.M., Brucefors, A.B., Yüksel, H., Catastini, P., Blackwell, L., Barker, D. (2014). Prevalence of depression and anxiety in patients with cystic fibrosis and parent caregivers: results of The International Depression Epidemiological Study across nine countries. Thorax, 69(12),1090-1097.
- Cal, S. F., Sá, L. R., Glustak, M. E., & Santiago, M. B. (2015). Resilience in chronic diseases: A systematic review. Cogent Psychology, 2(1), https://doi.org/10.1080/23311908.2015.1024928
- Weitzel, E.C., Löbner, M., Glaesmer, H., Hinz, A., Zeynalova, S., Henger, S., Engel, C., Reyes, N., Wirkner, K., Löffler, M., Riedel-Heller, S.G. (2022). The Association of Resilience with Mental Health in a Large Population-Based Sample (LIFE-Adult-Study). Int J Environ Res Public Health, 19(23), 15944. doi: 10.3390/ijerph192315944. PMID: 36498017; PMCID: PMC9740913.
- Landau, E.C., Verkleij, M., Graziano, S., Quittner, A.L., Georgiopoulos, A.M., Smith, B.A., Schechter, M.S., Abbott, J. (2022). Mental health screening in Cystic Fibrosis as an intervention: Patient and caregiver feedback on improving these processes, Respiratory Medicine, 202,106955. https://doi.org/10.1016/j.rmed.2022.106955