Ethnocultural Variation in Need for Support Among Adult Children Caregivers

Family members currently provide the core of long-term care for older adults in the U.S., saving the government an estimated $306 billion year (Arno, 2006). The availability of these caregivers to continue to provide care will be vital as the elderly population continues to grow and becomes increasingly racially and ethnically diverse (CDC, 2007). Formal service use has been shown to help reduce stress and burden for caregivers (Zarit, 1999; Winslow, 2003), yet underutilization of formal services by care receivers/caregivers, particularly minority care receivers/caregivers, is well-documented (Winslow, 2003; Casado & Choi, 2005). Research is needed to understand why caregivers seek or do not seek services. This qualitative study was undertaken to explore the experiences of racially and ethnically diverse adult children caregivers with formal service use and unmet needs, and to determine whether ethnocultural differences exist. Five focus groups (2 African American, 2 Latino/Hispanic and 1 Caucasian) were held with a total of 35, mostly female (86%) caregivers, from Long Island and New York City. Caregivers representing all three ethnocultural groups reported using formal services, suggesting that existing formal services are useful to caregivers from a variety of ethnocultural backgrounds. Caregivers who had not used formal services cited a range of reasons for this. Lack of knowledge of available services was reported as a reason for nonuse of services by a surprisingly large number of caregivers from all three ethnocultural groups. Those caregivers who were aware of services reported barriers to service use which included: cost, limited time, access issues and care-receiver refusal (all groups); eligibility issues (Latino/Hispanic only); and caregiver reluctance (African American only). When asked about needs not met by existing services caregivers reported: training in personal care and healthcare professionals trained in geriatrics (all groups); education about the care-receiver's illness (Latino/Hispanic and African American caregivers); and a central source for information/assistance, homecare workers trained in dementia care, Spanish-speaking professionals, and linguistically and culturally appropriate programs and informational materials (Latino/Hispanic only). Implications of study findings for development of programs and policies that meet the needs of racially and ethnically diverse family caregivers are discussed.