Instruments for Evaluating Caregiver Burden continued...
Another study analyzed reports of employment loss due to caregiving. Results showed that African American and Hispanic caregivers were more likely than white caregivers to reduce their work hours to care for patients. In addition, minority caregivers were reluctant to use formal nursing home services for their loved ones. The decision to reduce work hours rather than place a relative in a nursing home was associated with increased psychological, social, and financial burden.
Accepting the burden of caregiving may lead to depression in caregivers. Caregivers who have no outside help are more depressed than those who receive help from secondary informal caregivers or from formal resources. Despite reporting stress, many Hispanic and African American caregivers do not seek outside help, even when they are aware of support groups and other resources. This barrier to care may be a reluctance to share familial problems with outsiders. Other barriers include the following:
- Lack of availability of outside help.
- Lack of community awareness.
- Lack of trust in social service providers.
- Misperceptions of the role of hospice services.
Because African Americans rely heavily on closely knit groups of friends and family, they are less inclined to welcome strangers such as home care workers into their networks.
In addition, a prerequisite for obtaining hospice care is the presence of a primary caregiver in the home. Because African American family members often must work outside the home, no one is available to care for the patient, and the patient may thus be barred from hospice care. Members of the African American community may also be uncomfortable with the concept of palliative care, which seems to encourage the patient to give up and stop fighting. These cross-cultural issues are important in assessing caregiver needs and in designing clinical and educational programs to meet those needs.
Caregiver Age and Health Status
Family caregivers often feel unprepared, have inadequate knowledge, and receive little guidance from the oncology team for providing care to the cancer patient. Older caregivers are especially vulnerable because they may present with comorbidities, they may be living on fixed incomes, and their available social support networks may have shrunk. In addition, older caregivers of cancer patients may neglect their own health needs, have less time to exercise, forget to take their own prescription medications, and become fatigued from interrupted sleep. It is therefore common for caregiving by older people to lead to poor physical health, depression, and even increased mortality.[28,29]
Younger caregivers must generally juggle work, their own family responsibilities, and sacrifices involving their social lives. Middle-aged caregivers typically worry about missed workdays, interruptions at work, taking leaves of absence, and reduced productivity.[30,31]
Substantial out-of-pocket costs involved in caregiving can create financial strain for the families of patients with cancer. Higher income can mitigate some of these effects because wealthier families are better able to purchase care and external support services, which can lower feelings of distress. On the other hand, low personal and household incomes and limited financial resources may also place families at risk for treatment compliance or treatment-related decisions that are made on the basis of income.