Factors to Consider in Caregiver Assessment
Instruments for Evaluating Caregiver Burden continued...
Access to care may be compromised by the family's reluctance to discuss the disease among themselves. Some Asian Americans believe that talking about death or dying is bad luck, which greatly complicates discussions about prognosis and informed consent. Keeping a cancer diagnosis secret from a patient and avoiding discussions of disease progression can add to a caregiver's sense of burden and responsibility. Early in the initial assessment, cultural beliefs about illness and caregiver roles should be identified and discussed.
Studies show that Hispanic and African American patients and caregivers underutilize community health resources, including counseling and support groups, home care, residential care, and hospice services. There are many reasons for this underutilization. One important reason is that strong family ties may prevent minority caregivers from seeking help outside of the family unit. A study that compared African American, white, and Hispanic caregivers found that 75% of Hispanic patients and 60% of African American patients lived with the family of the primary caregiver. The minority families relied more on informal caregiving from friends and relatives and had larger social support networks than the white families. However, this increased sense of obligation to provide care for older family members was associated with more caregiving hours, greater resignation about caregiving, higher levels of caregiver strain, and a larger reduction in household income than that reported by white caregivers.[22,23]
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.