What is caregiver fear and uncertainty?
Uncertainty is the inability to know what will happen in the future. Cancer and cancer treatment can be scary and unpredictable. Feelings of fear and uncertainty can be triggered by not knowing how the disease will impact the patient and family physically, emotionally, and financially or how the illness may impact employment. Changing roles may also cause anxiety. You may also fear losing your loved one. Feelings of fear and uncertainty among caregivers are normal. There are many things about cancer care that is not predictable. Sometimes uncertainty can change the plans people had, such as retirement or travel.
Family caregivers need information to reduce fear and uncertainty. But, they can become a problem if the caregiver feels he or she has no control over life or is overly anxious, angry, depressed, or stressed as a result. Sometimes this comes from a lack of information, so be sure to get the information you need and want. This will give you a better sense of control.
What can I do about my fear and uncertainty?
Here are some tips:
- Be sure you ask for information and understand the disease and treatment.
- Talk to the patient’s healthcare provider about what to expect from treatment and the disease. Then prepare to use the information to the best of your abilities.
- Replace expectations with plans and prepare for different possibilities.
- Ask a friend or family member to help find information on treatment and the disease process (check sources like the American Cancer Society and National Cancer Institute).
- Try not to let your emotions and fears sway your decisions. Seek out the information you need to make good decisions.
- Don’t try to deny your fear and uncertainty. It is normal. Talk about it with a friend, pastor, or counselor. Talk about it with your loved ones and health care team.
- Try to avoid thinking about "what if's." Do your best to focus on the present rather than focusing on the uncertain future.
- Try to focus on the aspects of your life that you do have control over.
- Acknowledge your fears but do not let them take control.
- Find relaxing ways that give your mind a break. Distract yourself with a book, a movie, or a friendly conversation, or ask a friend to spend time with you doing something fun.
- Take a walk, and find positive things in nature.
- Practice mindfulness.
- Work towards having a positive perspective. Try writing down a list of things you’re thankful for.
- Look at your positive list when you are feeling fearful.
- Find an online or in-person support group.
- Rely on your faith and members of your church if applicable.
- Figure out what helps you manage stress and utilize stress reduction techniques.
- Gain confidence in your coping skills.
- Try to stay up to date with information about the patient’s status – this will help reduce uncertainty.
- If your fear becomes overwhelming and lasts for more than two weeks, consider consulting a counselor or social worker.
When should I talk to my doctor about my fear and uncertainty?
Talk to your doctor if you have:
- Depression lasting two or more weeks
- Anxiety and fears that gets in the way of daily activities
- Sleep problems
- Difficulty concentrating in your daily life
- Overwhelming fears of uncertainty
- Fear or uncertainty that interferes with your appetite
- Guan, T., Qan’ir, Y. & Song, L. (2021). Systematic review of illness uncertainty management interventions for cancer patients and their family caregivers. Support Care Cancer 29, 4623–4640. https://doi.org/10.1007/s00520-020-05931-x
- Petursdottir, A. B., Rayens, M. K., Sigurdardottir, V., & Svavarsdottir, E. K. (2021). Long-term effect of receiving a family strengths-oriented intervention on family cancer caregiver stress, anxiety, and depression symptoms: A longitudinal quasi-experimental study. Journal of Family Nursing, 27(2), 114-123. DOI 10.1177/1074840721994332
- Guan, T., Chapman, M.V., de Saxe Zerden, L. et al. Correlates of illness uncertainty in cancer survivors and family caregivers: a systematic review and meta-analysis. Support Care Cancer 31, 242 (2023). DOI 10.1007/s00520-023-07705-7