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

项目摘要 癌症仍然是拉丁美洲人死亡的主要原因， 强调了在癌症发生的文化背景下关注癌症的必要性。尽管研究 年轻的成年拉丁美洲癌症幸存者是稀缺的，一些证据表明，家庭关系和 家庭动力学中反映的共同文化价值观对年轻人癌症结局有影响 幸存者迄今为止的研究已经错过了了解家庭生育复杂性的机会， 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保健互动 和多个家庭照顾者，可以利用，以有利于治疗经验和健康 年轻拉丁裔癌症患者的预后。 响应RFA的目的和范围以及医学研究所的研究呼吁 了解不同的家庭动力学在年轻的成年癌症幸存者，这项研究的目标是得出一个 深入了解拉丁美洲家庭的非正式婚姻模式和各种家庭的关键作用 成员在审议过程中制定。需要有这样一种理解，以便能够确定 文化影响对医疗保健参与和提供以及患者和家庭福祉至关重要。 该研究的目的是（1）：描述癌症在年轻成年拉丁美洲癌症患者的生活， 关注与医疗保健的接触;患者健康结果（例如，症状管理，日常任务 生活，生活质量）;和家庭幸福的基础上深入定性访谈的拉丁美洲母亲，父亲， 兄弟姐妹和年轻癌症患者的大家庭;（2）描述肿瘤护理的经验 年轻的成年拉丁裔癌症患者的提供者，重点是家庭康复的期望，挑战， 以及关于医疗保健参与和护理交付的偏好;以及（3）对患者，家庭， 和提供者数据，以确定一个紧急的概念模型，为未来的开发和测试提供信息， 旨在改善医疗保健参与度、患者结局和家庭护理者的干预策略 拉丁裔家庭的幸福 本研究采用了一种创新的定性访谈和数据分析策略，将数据按家庭分类， 作为组织单位的角色（即，年轻的成年幸存者，母亲，父亲，兄弟姐妹，大家庭）。与 年轻成人癌症存活率的集体专业知识，拉丁美洲家庭的关系动态，干预 癌症护理人员的发展，并使用定性方法，这个研究小组是独特的定位 实现这些研究目标。调查结果有可能帮助拉丁裔家庭利用文化- 塑造弹性因素和缓解风险因素，以改善患者和家庭成员的结局，以及 协助医疗保健提供者提供文化上胜任的护理，并优化家庭成员的作用， 单位简介

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.