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Family Caregivers in Cancer: Roles and Challenges (PDQ®)

Health Professional Version
Last Modified: 02/21/2014

Impacts of Caregiving on the Caregiver’s Quality of Life

Physical Impact
Social Impact
Financial Impact
Psychological Impact
Spiritual Impact
Positive Aspects of Caregiving

Caregiver burden is commonly used to describe multiple dimensions of distress that result from an imbalance between care demands and the availability of resources to meet those demands. Although quality of life is a multidimensional construct, the most studied aspect of quality of life in caregivers is psychological distress.[1] Most family caregivers do not experience clinically significant levels of depression when providing care, but some studies report levels of depressive symptoms in caregivers that are similar to, or even higher than, those in patients with cancer.[2][Level of evidence: II]

Physical Impact

The physical aspects of caregiving have rarely been studied. Caregiving may be solely limited to physical care such as helping with toileting or eating but can also include lifting, positioning, transferring, massaging, and operating medical equipment. The physical demands of caregiving are closely related to medical variables such as the following:

  • Disease stage.
  • Level of symptomatology.
  • Functional ability.
  • Fatigue level.
  • Side effect profile.

Cancer patients require varying levels of practical assistance during the course of their illness. Cumulative sleep disruption and fatigue are common among caregivers who are on duty 24 hours a day or only during nighttime hours. Behaviors such as not getting enough rest or exercise and neglecting their own health can mimic depression in caregivers but can also contribute to the impairment of their health and quality of life.[3];[4][Level of evidence: II]

Social Impact

Social roles and relationships are profoundly affected by cancer. The nature and quality of the preexisting patient-caregiver relationship are important considerations in the assessment and treatment of caregiver burden. If marital or relationship strain predates the onset of cancer or pain, the caregiver may approach caregiving grudgingly. In addition, caregiving is time consuming and can lead to feelings of social isolation.

The social impact of cancer and pain can be ameliorated by social support, financial security, and stability at work. Given the increasingly chronic nature of cancer, caregivers may find that support in all of these areas erodes over time. Encouraging caregivers to network with other families and linking them with formal resources can help augment informal sources of social support.

Financial Impact

The financial impact and hidden costs of cancer may affect caregiver burden. Families can incur financial burden from insurance deductibles, copayments, uncovered services such as transportation and home care, and lost salaries. Additional costs to caregivers, in terms of time associated with caring for a patient with cancer, include the following:[5]

  • Traveling to and from medical appointments.
  • Waiting with patients for appointments.
  • Missing work.
  • Preparing for surgery and medical procedures.
  • Neglecting their usual activities and relationships.
  • Attending to patients who are hospitalized.

Other social costs include time spent at home during a patient’s recovery, time spent addressing insurance issues, and disruptions of companionship, emotional support, conversation, and other forms of distraction.[6]

Psychological Impact

Family members confronting serious illness have been found to experience as much distress as, if not more distress than, the patient with cancer. This distress arises from the caregiver role itself as well as witnessing the patient’s suffering.[7] A meta-analysis of psychological distress among cancer patients and family caregivers found that both members of the dyad experienced similar levels of distress.[8]

Related personality characteristics such as optimism and pessimism affect the psychological impact of caregiving. A family caregiver burdened by loss, stressful life events, or strife in the relationship with the patient may enter the new caregiving role already overwhelmed. Although meeting the psychological needs of the caregiver may fall outside the scope of the oncology team, these needs are significant insofar as they affect the quality of caregiving as well as the likelihood of premature and unnecessary hospital admissions.[9]

A caregiver’s quality of life has been found to be influenced by the cancer patient’s stage of illness and goals of care.[10][Level of evidence: I] One prospective population-based cohort study found that caregiver strain increased mortality risk by 63% within 5 years.[11][Level of evidence: II]

Spiritual Impact

The spiritual aspect of caregiver quality of life has been inadequately studied.[9] A few studies have shown patients and caregivers to have parallel spiritual tasks when dealing with cancer, such as finding meaning and hope in the disease process while also posing existential questions about the meaning of life.[12]

Spiritual well-being may provide a stress-buffering effect for caregivers. Higher levels of spirituality are associated with lower psychological distress and improved well-being for caregivers.[13] In addition, maintaining faith and finding meaning have been shown to mitigate the adverse effects of caregiving stress on mental health.[14] Spirituality can fortify caregivers against hopelessness, help caregivers derive meaning from the cancer experience, and provide an existential perspective on hope and suffering.[15] Any member of the oncology team can explore the spiritual or religious values that inform a person’s response to caregiving, but generally speaking, the social worker and chaplain are most adept in this area. (Refer to the PDQ summary on Spirituality in Cancer Care for more information about spirituality and religion in cancer care.)

Positive Aspects of Caregiving

Caregivers assume their tasks for reasons that include a sense of familial obligation and loyalty and altruism in the face of their loved one’s suffering; more practical reasons include lack of paid help and lack of insurance coverage for services.[16] Other positive rewards of caregiving include the following:

  • Discovery of personal strength through adversity.
  • Improved sense of self-worth.
  • Deepening of the relationship with the cancer patient.
  • A sense of personal growth.

Studies have shown that caring for a patient with cancer has rewards such as satisfaction, closeness with the cancer patient, and a sense of fulfilling an obligation. Positive and negative aspects of caregiving are associated with psychological well-being and the caregiver’s willingness to continue providing care.[17]

The positive aspects of caregiving can be strengthened by psychological support and practical assistance with problem solving from health care professionals.[18] Direct professional validation of caregivers and indirect support through the patient’s medical care are associated with higher caregiver satisfaction and the willingness to continue providing care.[18,19]

To reduce the stress of frequent clinic visits, caregivers should also be provided with options such as using long-acting medication regimens or telephone triage. Educating caregivers about pertinent aspects of cancer management and available community resources can be accomplished through individual contact with health care professionals or through more formal educational programs.

References
  1. 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.  [PUBMED Abstract]

  2. Kim Y, Duberstein PR, Sörensen S, et al.: Levels of depressive symptoms in spouses of people with lung cancer: effects of personality, social support, and caregiving burden. Psychosomatics 46 (2): 123-30, 2005 Mar-Apr.  [PUBMED Abstract]

  3. Carter PA: Caregivers' descriptions of sleep changes and depressive symptoms. Oncol Nurs Forum 29 (9): 1277-83, 2002.  [PUBMED Abstract]

  4. Travis LA, Lyness JM, Shields CG, et al.: Social support, depression, and functional disability in older adult primary-care patients. Am J Geriatr Psychiatry 12 (3): 265-71, 2004 May-Jun.  [PUBMED Abstract]

  5. Yabroff KR, Davis WW, Lamont EB, et al.: Patient time costs associated with cancer care. J Natl Cancer Inst 99 (1): 14-23, 2007.  [PUBMED Abstract]

  6. 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. 

  7. 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.  [PUBMED Abstract]

  8. Hodges LJ, Humphris GM, Macfarlane G: A meta-analytic investigation of the relationship between the psychological distress of cancer patients and their carers. Soc Sci Med 60 (1): 1-12, 2005.  [PUBMED Abstract]

  9. Ferrell BR, Dow KH, Grant M: Measurement of the quality of life in cancer survivors. Qual Life Res 4 (6): 523-31, 1995.  [PUBMED Abstract]

  10. 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.  [PUBMED Abstract]

  11. Schulz R, Beach SR: Caregiving as a risk factor for mortality: the Caregiver Health Effects Study. JAMA 282 (23): 2215-9, 1999.  [PUBMED Abstract]

  12. Taylor EJ: Nurses caring for the spirit: patients with cancer and family caregiver expectations. Oncol Nurs Forum 30 (4): 585-90, 2003 Jul-Aug.  [PUBMED Abstract]

  13. Kim Y, Wellisch DK, Spillers RL, et al.: Psychological distress of female cancer caregivers: effects of type of cancer and caregivers' spirituality. Support Care Cancer 15 (12): 1367-74, 2007.  [PUBMED Abstract]

  14. Colgrove LA, Kim Y, Thompson N: The effect of spirituality and gender on the quality of life of spousal caregivers of cancer survivors. Ann Behav Med 33 (1): 90-8, 2007.  [PUBMED Abstract]

  15. Ward SE, Berry PE, Misiewicz H: Concerns about analgesics among patients and family caregivers in a hospice setting. Res Nurs Health 19 (3): 205-11, 1996.  [PUBMED Abstract]

  16. Feinberg LF, Wolkwitz K, Goldstein C: Ahead of the Curve: Emerging Trends and Practices in Family Caregiver Support. Washington, DC: AARP Public Policy Institute, 2006. Issue Paper No. 2006-09. Also available online. Last accessed February 18, 2014. 

  17. Balducci C, Mnich E, McKee KJ, et al.: Negative impact and positive value in caregiving: validation of the COPE index in a six-country sample of carers. Gerontologist 48 (3): 276-86, 2008.  [PUBMED Abstract]

  18. Haley WE: Family caregivers of elderly patients with cancer: understanding and minimizing the burden of care. J Support Oncol 1 (4 Suppl 2): 25-9, 2003 Nov-Dec.  [PUBMED Abstract]

  19. Kim Y, Schulz R, Carver CS: Benefit-finding in the cancer caregiving experience. Psychosom Med 69 (3): 283-91, 2007.  [PUBMED Abstract]