Family Caregivers in Cancer: Roles and Challenges (PDQ®): Supportive care - Health Professional Information [NCI] - The Caregiver's Perspective: Across the Illness Trajectory
Caregivers providing end-of-life care have been shown to experience increased emotional distress, regardless of the amount of care provided, when they are limited in their ability to participate in valued activities and interests. Research had suggested that caregivers of cancer patients were at risk of developing a variety of psychological and physical problems, including anxiety, depression, fatigue, reduced self-esteem, and somatic health problems.[27,28] However, the landscape has changed since the development of hospice and palliative medicine as a medical specialty, the availability of specialist-level palliative care consultation teams, and the equal focus on the cancer patient and family caregiver as the unit of care.
Hospital palliative care programs have been shown to improve caregiver well-being, family satisfaction, and physical and psychological symptom management for patients and caregivers alike. In a retrospective study involving 524 caregivers, palliative care consultation was associated with higher scores in nine caregiver-related domains of care during the last month of life. These differences were attributable primarily to improvements in communication and emotional support.
Generally speaking, the hallmarks of palliative care that relate to caregivers include the following:
- An interdisciplinary focus.
- Concern for quality of life of both patients and family caregivers.
- Involvement of caregivers in symptom management, communication, and medical decision making.
While the oncologist and other team members cannot be expected to address the symptoms of psychological distress in family caregivers, it is nonetheless helpful to recognize and identify such symptoms so that caregivers can be referred to any services they may need. (Refer to the PDQ summary on Last Days of Life for more information about end-of-life care.)
- Given BA, Given CW, Kozachik S: Family support in advanced cancer. CA Cancer J Clin 51 (4): 213-31, 2001 Jul-Aug.
- Kozachik SL, Given CW, Given BA, et al.: Improving depressive symptoms among caregivers of patients with cancer: results of a randomized clinical trial. Oncol Nurs Forum 28 (7): 1149-57, 2001.
- Kim Y, Given BA: Quality of life of family caregivers of cancer survivors: across the trajectory of the illness. Cancer 112 (11 Suppl): 2556-68, 2008.
- Innes S, Payne S: Advanced cancer patients' prognostic information preferences: a review. Palliat Med 23 (1): 29-39, 2009.
- Back AL, Arnold RM, Baile WF, et al.: Efficacy of communication skills training for giving bad news and discussing transitions to palliative care. Arch Intern Med 167 (5): 453-60, 2007.
- Zabora JR, Smith ED, Baker F, et al.: The family: the other side of bone marrow transplantation. Journal of Psychosocial Oncology 10 (1): 35-46, 1992.
- Yeager KA, Miaskowski C, Dibble SL, et al.: Differences in pain knowledge and perception of the pain experience between outpatients with cancer and their family caregivers. Oncol Nurs Forum 22 (8): 1235-41, 1995.
- Glajchen M: Role of family caregivers in cancer pain management. In: Bruera ED, Portenoy RK, eds.: Cancer Pain: Assessment and Management. 2nd ed. New York, NY: Cambridge University Press, 2009, pp 597-607.
- Siminoff LA, Rose JH, Zhang A, et al.: Measuring discord in treatment decision-making; progress toward development of a cancer communication and decision-making assessment tool. Psychooncology 15 (6): 528-40, 2006.
- Fried TR, Bradley EH, Towle VR: Valuing the outcomes of treatment: do patients and their caregivers agree? Arch Intern Med 163 (17): 2073-8, 2003.
- Siminoff LA, Zyzanski SJ, Rose JH, et al.: The Cancer Communication Assessment Tool for Patients and Families (CCAT-PF): a new measure. Psychooncology 17 (12): 1216-24, 2008.
- McCorkle R, Benoliel JQ, Donaldson G, et al.: A randomized clinical trial of home nursing care for lung cancer patients. Cancer 64 (6): 1375-82, 1989.
- Christakis NA, Allison PD: Mortality after the hospitalization of a spouse. N Engl J Med 354 (7): 719-30, 2006.
- Mellon S, Northouse LL, Weiss LK: A population-based study of the quality of life of cancer survivors and their family caregivers. Cancer Nurs 29 (2): 120-31; quiz 132-3, 2006 Mar-Apr.
- Northouse LL, Templin T, Mood D, et al.: Couples' adjustment to breast cancer and benign breast disease: a longitudinal analysis. Psychooncology 7 (1): 37-48, 1998 Jan-Feb.
- Walker BL: Adjustment of husbands and wives to breast cancer. Cancer Pract 5 (2): 92-8, 1997 Mar-Apr.
- Ganz PA, Coscarelli A, Fred C, et al.: Breast cancer survivors: psychosocial concerns and quality of life. Breast Cancer Res Treat 38 (2): 183-99, 1996.
- Nijboer C, Triemstra M, Tempelaar R, et al.: Patterns of caregiver experiences among partners of cancer patients. Gerontologist 40 (6): 738-46, 2000.
- Gritz ER, Wellisch DK, Siau J, et al.: Long-term effects of testicular cancer on marital relationships. Psychosomatics 31 (3): 301-12, 1990.
- Lewis FM, Hammond MA: Psychosocial adjustment of the family to breast cancer: a longitudinal analysis. J Am Med Womens Assoc 47 (5): 194-200, 1992 Sep-Oct.
- Kim Y, Carver CS: Frequency and difficulty in caregiving among spouses of individuals with cancer: effects of adult attachment and gender. Psychooncology 16 (8): 714-23, 2007.
- Tuinman MA, Fleer J, Hoekstra HJ, et al.: Quality of life and stress response symptoms in long-term and recent spouses of testicular cancer survivors. Eur J Cancer 40 (11): 1696-703, 2004.
- Weitzner MA, McMillan SC, Jacobsen PB: Family caregiver quality of life: differences between curative and palliative cancer treatment settings. J Pain Symptom Manage 17 (6): 418-28, 1999.
- McMillan SC, Small BJ, Weitzner M, et al.: Impact of coping skills intervention with family caregivers of hospice patients with cancer: a randomized clinical trial. Cancer 106 (1): 214-22, 2006.
- Sales E: Psychosocial impact of the phase of cancer on the family: an updated review. Journal of Psychosocial Oncology 9 (4): 1-18, 1992.
- Cameron JI, Franche RL, Cheung AM, et al.: Lifestyle interference and emotional distress in family caregivers of advanced cancer patients. Cancer 94 (2): 521-7, 2002.
- Kinsella G, Cooper B, Picton C, et al.: Factors influencing outcomes for family caregivers of persons receiving palliative care: toward an integrated model. J Palliat Care 16 (3): 46-54, 2000.
- Baider L, Kaufman B, Peretz T, et al.: Mutuality of fate: adaptation and psychological distress in cancer patients and their partners. In: Baider L, Cooper CL, Kaplan De-Nour A, eds.: Cancer and the Family. Chichester, England: John Wiley & Sons, 1996, pp 173-86.
- Casarett D, Pickard A, Bailey FA, et al.: Do palliative consultations improve patient outcomes? J Am Geriatr Soc 56 (4): 593-9, 2008.
- Morrison RS, Meier DE: Clinical practice. Palliative care. N Engl J Med 350 (25): 2582-90, 2004.