Instruments for Evaluating Caregiver Burden continued...
Demographic and psychosocial characteristics associated with caregiver distress (e.g., depression, general psychological distress, and cancer-specific distress) include the following:
- Being a woman.
- Being younger.
- Being the patient's spouse.
- Having lower socioeconomic status.
- Being employed.
- Lacking personal and social support.
Factors specific to the caregiving situation that also are related to caregiver distress include caregiving burden, self-efficacy for caregiving, types of care provided, and the survivor's functional status.
Family caregivers report various problems with their caregiving experiences, including conflict among their social roles, restrictions on activities, strain in marital and family relationships, psychological distress, and diminished physical health.
Timing of the Assessment
Caregiver assessment can be performed at any point of contact within the health care system. Ideally, a comprehensive caregiver assessment should be performed when the patient is first diagnosed with cancer, when the patient presents in the emergency department, and when a major transition is planned. In systems where caregivers are assessed, caregivers can be acknowledged by practitioners as valued members of the health care team. Caregiver assessment can identify family members most at risk for health and mental health difficulties so that additional services can be planned accordingly.
Caregiver assessment needs to be multidimensional and reflect culturally competent practice. Studies have shown that cultural beliefs play a part in influencing family emotions and concerns in the cancer experience.
In a meta-analysis of 116 empirical studies, Asian American caregivers were found to provide more caregiving hours than white, African American, and Hispanic caregivers; to use lower levels of formal support services; and to have fewer financial resources, lower levels of education, and higher levels of depression than the other subgroups. These findings are important for the oncology team because caregivers with no outside help are more depressed than those who receive help. A study involving unmet needs and service barriers among Asian American caregivers found that caregivers refused outside help because they "felt too proud to accept it" or "didn't want outsiders coming in"; other reported barriers included "bureaucracy too complex" or "can't find qualified providers."
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]