Cancer Caregiving in Latinos

Pilot Abstract

The Washington, DC area has a rapidly growing Latino population. Cancer is the leading cause of death in Latinos. The burden of caregiving for cancer patients can cause long- term physical and emotional distress for family caregivers and large studies have shown that hospice care results in better care for the patient and less stress for the caregiver. However, Latinos may be less likely to use hospice services, even though their needs may be greater. Recent studies indicate a variety of unmet needs in Latino cancer caregivers in our area, most of whom are new immigrants - poor, uninsured, and monolingual in Spanish. Extended families, a traditional resource for Latinos, are often missing from immigrant families, leaving caregivers unsupported with competing roles and responsibilities, including childcare and wage earning. In addition, services are often not available in Spanish and there may be cultural barriers to seeking formal services. In order to study cancer caregiving in this understudied population, a bi-cultural, bi-lingual, interdisciplinary, academic/community partnership has been established between the Latin American Cancer Research Coalition (LACRC) and Capital Hospice. The overarching goals of the current project are to describe the needs of newly immigrated Latino cancer caregivers, determine cultural factors associated with hospice use, and to understand how hospice use influences the impact of caregiving on caregiver experience and outcomes. These goals address one of the NCI Office of Survivorship's primary research agenda's; to understand the needs and adjustment of cancer caregivers. To accomplish these goals, we will use qualitative methods to conduct 6 focus groups of Latino bereaved former caregivers (N = 18 hospice users and 18 non-hospice users) and 10 key informant interviews with providers to understand the impact of culture on care giving. Analysis will identify factors for future interventions to assist Latino caregivers, including promotion of increased hospice use. The proposed study will be the first to compare hospice and non-hospice use in a Latino population, providing guidance to hospice outreach efforts. It will also be the first study to acknowledge the effects of culture on specific factors in Latino caregiving decisions and experience and to identify specific targets for intervention to assist Latino caregivers.