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Understanding the Cancer Journey

http://vimeo.com/66246235

A primary caregiver’s role in the life of a cancer patient is very complex. Throughout your loved one’s cancer journey, you may experience strong emotional reactions to the ups and downs along the way, as if you and the person with cancer are interconnected.1Northouse L, Williams AL, Given B, McCorkle R. Psychosocial care for family caregivers of patients with cancer. J Clin Oncol. 2012 Apr 10;30(11):1227-34. In fact, people with cancer and their caregivers often experience similar levels of distress and depression.2Northouse LL, Mood DW, Schafenacker A, et al. Randomized clinical trial of a family intervention for prostate cancer patients and their spouses. Cancer. 2007 Dec 5;110(12):2809-18. In other words, you and your loved one will influence each other’s feelings during the journey.1Northouse L, Williams AL, Given B, McCorkle R. Psychosocial care for family caregivers of patients with cancer. J Clin Oncol. 2012 Apr 10;30(11):1227-34. But the complexity of this relationship doesn’t end there—as primary caregiver, you will fill a variety of roles for your loved one, in both practical and emotional respects.

Multiple roles as a caregiver

You are likely to play many roles as a caregiver, including but not limited to:

  • Helping your friend or family member with daily errands and tasks such as shopping, doing chores or providing transportation to medical appointments.3O'Mara A. Who's taking care of the caregiver? J Clin Oncol. 2005 Oct 1;23(28):6820-1. One reason your loved one may need help completing daily tasks is cancer-related fatigue. Two of the three main treatments for head and cancer are radiation therapy and chemoradiation therapy. 70 to 80 percent of people treated with radiation or chemoradiation therapy experience fatigue, and for one in three people the fatigue is so severe that daily tasks and routines cannot be completed.4, Vogelzang NJ, Breitbart W, Cella D, et al. Patient, caregiver, and oncologist perceptions of cancer-related fatigue: results of a tripart assessment survey. The Fatigue Coalition. Semin Hematol. 1997 Jul;34(3 Suppl 2):4-12.5, Smets EM, Garssen B, Schuster-Uitterhoeve AL, de Haes JC. Fatigue in cancer patients. Br J Cancer. 1993 Aug;68(2):220-4.6, Henry DH, Viswanathan HN, Elkin EP, Traina S, Wade S, Cella D. Symptoms and treatment burden associated with cancer treatment: results from a cross-sectional national survey in the U.S. Support Care Cancer. 2008 Jul;16(7):791-801.7Hofman M, Ryan JL, Figueroa-Moseley CD, Jean-Pierre P, Morrow GR. Cancer-related fatigue: the scale of the problem. Oncologist. 2007;12 Suppl 1:4-10. Therefore, you may be called upon to assist your loved one with these errands and tasks.
  • Providing medical care, ranging from administering oral medication to monitoring for side effects.3O'Mara A. Who's taking care of the caregiver? J Clin Oncol. 2005 Oct 1;23(28):6820-1.
  • Providing administrative support, such as helping your family member or friend learn more about insurance reimbursement or identifying resources for additional financial support as needed.1Northouse L, Williams AL, Given B, McCorkle R. Psychosocial care for family caregivers of patients with cancer. J Clin Oncol. 2012 Apr 10;30(11):1227-34.
  • Playing the role of counselor by providing emotional support and checking in with the patient to assess whether there are additional psychological needs that require the assistance of a mental health specialist.8Grov EK, Dahl AA, Moum T, Fosså SD. Anxiety, depression, and quality of life in caregivers of patients with cancer in late palliative phase. Ann Oncol. 2005 Jul;16(7):1185-91. A patient’s level of anxiety and depression, in addition to the proportion of people who experience these symptoms, varies during the cancer journey. However, among people who have cancer, up to 27 percent may experience depression, and 27 percent may experience anxiety during some phase of the cancer journey.1Northouse L, Williams AL, Given B, McCorkle R. Psychosocial care for family caregivers of patients with cancer. J Clin Oncol. 2012 Apr 10;30(11):1227-34.
  • Making medical decisions.8Grov EK, Dahl AA, Moum T, Fosså SD. Anxiety, depression, and quality of life in caregivers of patients with cancer in late palliative phase. Ann Oncol. 2005 Jul;16(7):1185-91. You may collaborate with your loved one to make treatment choices. If your loved one’s head and neck cancer is not curable, you may be called upon to make end-of-life medical decisions for your loved one.
  • Problem solving.9Nijboer C, Tempelaar R, Triemstra M, van den Bos GA, Sanderman R. The role of social and psychologic resources in caregiving of cancer patients. Cancer. 2001 Mar 1;91(5):1029-39. Your loved one’s cancer may pose challenges you have never encountered (e.g., how to obtain time off from work), which may require that you do research, explore options and make decisions with or for your loved one.
  • Adopting new roles as the need emerges. For example, if your loved one develops severe cancer-related fatigue, you may need to assume childcare responsibilities.3O'Mara A. Who's taking care of the caregiver? J Clin Oncol. 2005 Oct 1;23(28):6820-1.
It does get better, and that’s what people need to know. It does get better.Jason S. (tonsil cancer survivor)

References

1 Northouse L, Williams AL, Given B, McCorkle R. Psychosocial care for family caregivers of patients with cancer. J Clin Oncol. 2012 Apr 10;30(11):1227-34.

2 Northouse LL, Mood DW, Schafenacker A, et al. Randomized clinical trial of a family intervention for prostate cancer patients and their spouses. Cancer. 2007 Dec 5;110(12):2809-18.

3 O'Mara A. Who's taking care of the caregiver? J Clin Oncol. 2005 Oct 1;23(28):6820-1.

4 Vogelzang NJ, Breitbart W, Cella D, et al. Patient, caregiver, and oncologist perceptions of cancer-related fatigue: results of a tripart assessment survey. The Fatigue Coalition. Semin Hematol. 1997 Jul;34(3 Suppl 2):4-12.

5 Smets EM, Garssen B, Schuster-Uitterhoeve AL, de Haes JC. Fatigue in cancer patients. Br J Cancer. 1993 Aug;68(2):220-4.

6 Henry DH, Viswanathan HN, Elkin EP, Traina S, Wade S, Cella D. Symptoms and treatment burden associated with cancer treatment: results from a cross-sectional national survey in the U.S. Support Care Cancer. 2008 Jul;16(7):791-801.

7 Hofman M, Ryan JL, Figueroa-Moseley CD, Jean-Pierre P, Morrow GR. Cancer-related fatigue: the scale of the problem. Oncologist. 2007;12 Suppl 1:4-10.

8 Grov EK, Dahl AA, Moum T, Fosså SD. Anxiety, depression, and quality of life in caregivers of patients with cancer in late palliative phase. Ann Oncol. 2005 Jul;16(7):1185-91.

9 Nijboer C, Tempelaar R, Triemstra M, van den Bos GA, Sanderman R. The role of social and psychologic resources in caregiving of cancer patients. Cancer. 2001 Mar 1;91(5):1029-39.