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

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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.