Caregiving for Young Adults with Cancer in Latino Families: Understanding Healthcare Engagement and Family Wellbeing

点击翻译按钮获取中文摘要

Project Abstract Cancer remains the leading cause of death in Latinos and the growing number of young adult survivors highlights the need for a focus on cancer caregiving in the cultural context in which it occurs. Although studies of young adult Latino cancer survivors are scarce, some evidence suggests that family relationships and the shared cultural values reflected in family dynamics have implications for cancer outcomes in young adult survivors. Research to date has missed the opportunity to understand the complexity of familial caregiving, the influence of cultural values and norms related to familial roles, and healthcare interactions between providers and multiple familial caregivers that could be leveraged to benefit the treatment experience and health outcomes of young adult Latinos with cancer. Responsive to the purpose and scope of this RFA and the Institute of Medicine’s call for research understanding diverse family dynamics in young adult cancer survivors, the goal of this research is to derive an in-depth understanding of informal caregiving patterns in Latino families and the key roles various family members enact in the caregiving process. Such an understanding is needed to allow for the identification of cultural influences that matter for healthcare engagement and delivery, as well as patient and family well-being. The study aims to (1): describe cancer caregiving in the lives of young adult Latino cancer patients with a focus on engagement with health care; patient health outcomes (e.g., symptom management, tasks of daily living, quality of life); and familial well-being based on in-depth qualitative interviews of Latino mothers, fathers, siblings, and extended family of young adults with cancer; (2) describe the experiences of oncology care providers of young adult Latino cancer patients with a focus on familial caregiving expectations, challenges, and preferences regarding healthcare engagement and caregiving delivery; and (3) triangulate patient, family, and provider data to identify an emergent conceptual model to inform the future development and testing of intervention strategies aimed at improving healthcare engagement, patient outcomes, and familial caregiver well-being in Latino families. This study utilizes an innovative qualitative interview and data analytic strategy by grouping data by familial role as the unit of organization (i.e., young adult survivors, mothers, fathers, siblings, extended family). With collective expertise in young adult cancer survivorship, relational dynamics in Latino families, intervention development for cancer caregivers, and the use of qualitative methods, this study team is uniquely positioned to achieve these study aims. Findings have the potential to assist Latino families in capitalizing on culturally- shaped resilience factors and mitigating risk factors to improve outcomes for patients and family members, and to assist healthcare providers in providing culturally competent care and optimizing the role of the familial caregiving unit.