The Role of dyadic factors on psychosocial wellbeing and healthcare interactions among childhood cancer survivors, parents, and medical providers: A mixed method approach

摘要 据预测，将有50多万儿童癌症幸存者(CC)生活在美国 到2020年。尽管在治疗方面取得了进展，但大多数CCS将经历慢性或严重的疾病 他们的治疗结果被称为“后遗症”。有大量证据表明， CCS患者的心理困扰、健康相关生活质量受损(HRQOL)和晚期死亡率。尽管 这些严重和长期的健康挑战，与建议的生存护理的参与度下降 随着时间的推移，在这个高危人群中。在整个治疗和长期生存中，CCS的父母是 高度参与医疗护理，并在帮助CCS从儿童向成人重点过渡的过程中发挥作用 生还者护理。新出现的研究表明，父母的心理痛苦与较差的CCS有关 而西班牙裔/拉丁裔CCS可能出现这种不良后果的风险更高。这些研究 表明可能存在影响拉美裔/拉美裔家庭结局的背景和文化因素， 如文化适应、移民身份和语言方面。鉴于记录在案的治疗对 不良后果，如合并症和护理参与度，以及关键的护理作用 父母为CCS打球，检查父母、CCS和医疗提供者之间的关系对于 确定改善年轻成人CCS长期护理参与度的方法，特别是那些患有 较差的结果，如少数民族。建议研究的前提是多层次的因素 在不同的成年CCS人群中，造成HRQL和生存护理方面的差异。在我的 论文研究(F99阶段)，我专注于幸存者-照顾者二人组如何管理癌症，分享评估， 以及癌症的协作性管理如何优化 种族多元化的人口，重点是西班牙裔/拉丁裔家庭。在K00阶段，我将扩展这一功能 通过培养了解医疗保健系统和政策层面因素的专业知识来进行研究和培训 导致癌症存活率差异的原因。这项提案的结果将产生关于以下方面的重要信息 个人、人际、文化和医疗保健系统因素如何影响医疗决策和 研究不足和癌症高危人群的心理社会健康。建议的F99/K00方案 也是儿童癌症生存、治疗、获取和治疗计划下的优先科学研究领域 研究(STAR)法案，并与目前NCI用于干预研究的资金保持一致，以支持儿科和 青少年和青壮年癌症幸存者和照顾者。最终，完成这一综合培训将 请允许我应用在一所研究密集型大学学到的技能，在那里我处于研究的前沿 建立更健康的社区，开发新的方法来解决与癌症相关的具有挑战性的健康问题， 特别是在历史上被边缘化和服务不足的人群中。

ABSTRACT It is projected that there will be more than 500,000 childhood cancer survivors (CCS) living in the United States by 2020. Despite advances in treatment, the majority of CCS will experience a chronic or severe condition as a result of their treatment known as a “late effect. There is substantial evidence about the long-term effects of psychological distress, impaired health-related quality of life (HRQoL), and late mortality for CCS. Despite these serious and long-term health challenges, engagement with recommended survivorship care declines over time in this at-risk population. Throughout treatment and into long-term survivorship, parents of CCS are highly involved with medical care and play a role in helping CCS transition from pediatric to adult-focused survivorship care. Emerging studies suggest that parent’s psychological distress is related to poorer CCS HRQoL, and that Hispanic/Latino CCS may be at higher risk for such adverse outcomes. These studies suggest that there may be contextual and cultural factors that influence outcomes for Hispanic/Latino families, such as acculturation, immigration status, and linguistic aspects. Given the documented impact of treatment on adverse outcomes such as comorbid conditions and care engagement, and the key caregiving role that parents play for CCS, examining the relationships between parents, CCS, and medical providers is critical to identify ways to improve long-term care engagement for young adult CCS, particularly those at high risk for poorer outcomes such as ethnic minorities. The premise of the proposed research is that multi-level factors contribute to disparities in HRQoL and survivorship care among diverse populations of adult CCS. During my dissertation research (F99 phase), I focus on how survivor-caregiver dyads manage cancer, share appraisal, and how collaborative management of cancer optimizes both parent and child mental health among an ethnically diverse population with a focus on Hispanic/Latino families. During the K00 phase, I will extend this research and training by developing expertise in understanding healthcare system and policy-level factors that contribute to disparities in cancer survivorship. Results from this proposal will yield important information about how individual, interpersonal, cultural, and healthcare system factors impact medical decision-making and psychosocial health among an understudied and high-risk cancer population. The proposed F99/K00 proposal is also a priority area of scientific research under the Childhood Cancer Survivorship, Treatment, Access and Research (STAR) Act and is aligned with current NCI funding for intervention research to support pediatric and adolescent and young adult cancer survivor and caregivers. Ultimately, completing this integrated training will allow me to apply the skills learned at a research-intensive university, where I am at the forefront of research to build healthier communities, and develop new ways to address challenging cancer-related health problems, especially among historically marginalized and underserved populations.