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 预计将有超过50万儿童癌症幸存者（CCS）生活在美国 到2020年尽管治疗取得了进展，但大多数CCS患者将经历慢性或严重的疾病， 这种治疗的结果被称为“迟发效应”。有大量证据表明， CCS的心理困扰、健康相关生活质量（HRQoL）受损和晚期死亡率。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期间，CCS的父母 高度参与医疗护理，并在帮助CCS从儿科向成人过渡方面发挥作用 生存护理。新的研究表明，父母的心理困扰与CCS较差有关 HRQoL，西班牙裔/拉丁裔CCS可能具有更高的此类不良结局风险。这些研究 这表明可能有背景和文化因素影响西班牙裔/拉丁裔家庭的结果， 如文化适应、移民身份和语言方面。考虑到治疗对 不利的结果，如共病条件和护理参与，以及关键的康复作用， 父母为CCS打球，检查父母，CCS和医疗提供者之间的关系至关重要， 确定如何改善年轻成年CCS的长期护理参与，特别是那些高风险的CCS 少数民族等弱势群体。提出研究的前提是多层次因素 导致不同成人CCS人群中HRQoL和生存护理的差异。在我 论文研究（F99阶段），我专注于幸存者照顾者二人如何管理癌症，分享评估， 以及癌症的协作管理如何在一个家庭中优化父母和孩子的心理健康。 种族多样化的人口，重点是西班牙裔/拉丁裔家庭。在K 00阶段， 通过发展了解医疗保健系统和政策层面因素的专业知识进行研究和培训， 导致癌症存活率的差异。该提案的结果将产生以下重要信息： 个人、人际、文化和医疗系统因素如何影响医疗决策， 研究不足和高风险癌症人群的心理健康。F99/K 00提案 也是儿童癌症生存、治疗、获取和治疗计划下的一个优先科学研究领域。 研究（星星）法案，并与目前的NCI干预研究资金保持一致，以支持儿科和 青少年和年轻成年癌症幸存者和照顾者。最终，完成这一综合培训将 这使我能够运用在一所研究型大学学到的技能，在那里我处于研究的前沿， 建立更健康的社区，并开发新的方法来解决具有挑战性的癌症相关健康问题， 特别是在历史上被边缘化和得不到充分服务的人口中。

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.