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

项目摘要 癌症仍然是拉美裔人和越来越多的年轻成年幸存者的主要死亡原因 强调了在癌症发生的文化背景下关注癌症护理的必要性。虽然研究 年轻的成年拉丁裔癌症幸存者很少，一些证据表明，家庭关系和 反映在家庭动态中的共同文化价值观对年轻人的癌症结局有影响 幸存者。到目前为止，研究已经错过了理解家庭照料的复杂性的机会， 与家庭角色相关的文化价值观和规范的影响，以及提供者之间的医疗互动 以及可以利用的多个家庭照顾者，以使治疗体验和健康受益 年轻成年拉美裔癌症患者的结局。 响应本RFA的目的和范围以及医学研究所的研究号召 了解年轻癌症幸存者的不同家庭动态，这项研究的目标是推导出一个 深入了解拉美裔家庭中的非正式照料模式和各种家庭的关键作用 成员在照看过程中制定。需要这样的理解，以便能够确定 文化影响对医疗保健的参与和提供以及患者和家庭的福祉至关重要。 这项研究旨在(1)：描述年轻成年拉丁裔癌症患者生活中的癌症护理 重点关注卫生保健；患者的健康结果(例如，症状管理、日常任务 生活，生活质量)；和家庭幸福，基于对拉丁裔母亲，父亲， 兄弟姐妹和患有癌症的年轻人的大家庭；(2)描述肿瘤护理的经验 年轻成年拉丁裔癌症患者的提供者，专注于家庭护理的期望、挑战、 以及(3)对患者、家庭、 和提供商数据，以确定紧急概念模型，以便为未来的开发和测试提供信息 旨在改善医疗保健参与度、患者结局和家庭照顾者的干预策略 拉丁裔家庭的幸福。 本研究采用了创新性的定性访谈和数据分析策略，将数据按家族进行分组 发挥组织单位的作用(即年轻的成年幸存者、母亲、父亲、兄弟姐妹、大家庭)。使用 青年癌症存活率、拉丁裔家庭的关系动态、干预方面的集体专业知识 对于癌症护理人员的发展，以及定性方法的使用，这个研究团队具有独特的地位 来实现这些研究目标。这些发现有可能帮助拉丁裔家庭利用文化上的- 塑造复原力因素和减轻风险因素，以改善患者和家庭成员的结局 协助医疗保健提供者提供有文化能力的护理，并优化家庭成员的作用 护理室。

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.