Disclosure Preferences of Older Latinos with Advanced Cancer & their Caregivers

University Of Houston, Houston TX

Investigators

Abstract

? DESCRIPTION (provided by applicant): Meeting the communication needs and preferences of advanced cancer patients and their families is central to the delivery of quality care and speaks directly to the mission and programmatic goals of the National Institute of Nursing Research regarding palliative care, health disparities and this specific PA-11-182. However, little is known about the perceptions and preferences of older U.S. Latinos with cancer, one of the fastest growing segments of the older population and their family caregivers regarding the delivery of bad news. Evidence based guidelines regarding the communication of bad news are also limited, particularly for multicultural populations. Not knowing these preferences may hinder effective communication between providers and patients, an established ingredient for improving patient outcomes, as well as the use and quality of palliative care services. Guided by the Andersen, Aday Behavioral Model of Health Services Utilization the primary aim is to examine the association between behavioral, affective, cognitive and macro dimensions of culture and the disclosure and communication preferences of older Latinos with advanced cancer, and whether this association is moderated by key clinical, demographic and psychosocial factors. The study will also compare Latino cancer patients' disclosure preferences to those of their Anglo counterparts, as well as preferences between patients and caregivers in both groups. Survey participants will be 150 (100 Latino and 50 Anglo) older advanced cancer patients (stage 3 or 4 with locally advanced, recurrent or metastatic cancer) and 150 of their family caregivers. Using phenomenological interviews with a subsample of 20 Latino patients and 20 of their family caregivers, the study will explore and describe in-depth Latino patient and caregiver communication preferences regarding the content, style and timing of diagnostic and prognostic information, as well as perceptions and experiences that elucidate the context of their preferences within culture. Finally, the study will assess the concordance between patients' preferences and their self- reported actual experiences when they were first told they had cancer. The study will address critical knowledge gaps in bioethics research related to the tension between the principles of autonomy and beneficence in different cultures. It will be the first to identify the disclosure preferences of Latino patients and families using a unique approach which departs from the conventional notion that autonomy-based preferences are universal. It will also be the first to assess multiple dimensions of Latino culture in the area of health disparities in palliative care using mixed methods. A better understanding of patient and caregiver disclosure preferences will provide crucial information needed for future interventions, evidence-based guidelines, and enhancing vital provider-patient/family communication and care provided to older Latinos with advanced cancer and their families. Findings will also help inform approaches to the return of results to Latino cancer research participants and others with life limiting illnesses in our increasingly diverse, multicultural society.