University of Southern California Dissertations and Theses

The role of dyadic and triadic factors on psychosocial wellbeing and healthcare interactions among childhood cancer survivors, parents, and medical providers

(USC Thesis Other)

The role of dyadic and triadic factors on psychosocial wellbeing and healthcare interactions among childhood cancer survivors, parents, and medical providers

PDF

Download a page range

Download transcript

Copy asset link

Request this asset

Transcript (if available)

Content Copyright 2022 Carol Y. Ochoa THE ROLE OF DYADIC AND TRIADIC FACTORS ON PSYCHOSOCIAL WELLBEING AND HEALTHCARE INTERACTIONS AMONG CHILDHOOD CANCER SURVIVORS, PARENTS, AND MEDICAL PROVIDERS By: Carol Y. Ochoa, MPH ____________________________________________________________ A Dissertation Presented to the FACULTY OF THE USC GRADUATE SCHOOL UNIVERSITY OF SOUTHERN CALIFORNIA In Partial Fulfillment of the Requirements for the Degree DOCTOR OF PHILOSOPHY (PREVENTIVE MEDICINE (HEALTH BEHAVIOR)) May 2022 ii ACKNOWLEDGEMENTS The completion of my dissertation would not have been possible without the support, encouragement, and guidance of many people, both professionally and personally, throughout my life. A Personal Thank You First and foremost, I would like to thank God, who has granted me countless blessings, the strength, knowledge and opportunity to pursue higher education. I am thankful to my family and friends who have supported me along this long academic journey. I owe this momentous accomplishment to all of my parents' and grandparents' sacrifice, love, and hard work. To my siblings, nieces and nephew (Delilah, Moises, and Violet), and extended family in the U.S. and Guatemala, thank you for the unconditional love, emotional support, and for always believing in me. I would also like to thank my fiancé, Stanley, for your love, patience, and unwavering support. To my friends and colleagues, thank you for always being a great source of support, whether it be emotional, informational, tangible, etc. Within USC and during my doctoral training, this has included Cynthia B., Steven, Patricia, Ixel, Ugonna, Gilberto, Jaime, Bibiana, Erin, Stephanie, Victoria, Kelsey, Sabrina, and Gabriela. Outside of USC, I have too many friends to name individually. Still, I would like to acknowledge and thank friends from middle school, high school, UCLA besties and CCM, Emory BSHE and Atlanta friends, and numerous others I have connected with throughout the years. Dissertation Committee I would like to thank my dissertation committee, Drs. Lourdes Baezconde-Garbanati, Randall Chan, Junhan Cho, Albert Farias, Joel Milam, and Kimberly Miller, for all of your iii support, guidance, and mentorship these last five years. Thank you, Dr. Baezconde, for being my advisor and committee chair; your encouragement and guidance have been invaluable. Thank you, Dr. Chan, for opening the doors to your clinic at LAC+USC and the clinical perspective that you have provided me throughout the dissertation process. Thank you, Dr. Cho, for your advice on my statistical analysis, for your feedback and encouragement. Thank you, Dr. Farias, for all of the mentorship and opportunities you have given me to collaborate with you and other students. Thank you, Dr. Milam, for allowing me to work with the Project Forward data and be a part of the Young Adult Cancer Survivor Scholars. Lastly, I am particularly grateful for Dr. Miller; your commitment to my training, personal growth, and well-being have enhanced my time at USC. You encouraged me to collect primary qualitative data, played a critical role in my collaboration with LAC+USC, and have been highly informative when I sought guidance throughout this project's development, data collection, and analysis. Survivors, Caregivers, Staff, and Funding I want to finish by thanking the participants and staff who made this work possible. I extend my gratitude to the men and women who provided insight and perspective, and without whom this work would not be possible. This dissertation research was supported by the National Cancer Institute under Award Number F99CA264294 (PI: Ochoa, Carol). This research was also supported by an institutional Southern California Clinical and Translation Science Institute awarded (SC CTSI) by the University of Southern California and an Institutional Training Grant from the National Cancer Institute (5T32CA009492-34). The Project Forward studies data were funded by the Whittier Foundation, the National Institute on Minority Health and Health Disparities (1R01MD007801), and the National Cancer Institute (P30CA014089). iv TABLE OF CONTENTS ACKNOWLEDGEMENTS ........................................................................................................ ii LIST OF TABLES ..................................................................................................................... vii LIST OF FIGURES .................................................................................................................. viii ABSTRACT ................................................................................................................................. ix CHAPTER 1: BACKGROUND AND SIGNIFICANCE .......................................................... 1 The need for life-long follow-up care for survivors of childhood cancer ........................... 1 Overview of childhood cancer survivorship (CCS) ................................................ 1 Late effects and long-term impact .......................................................................... 2 Parents role in healthcare and long-term follow-up ............................................................ 4 Social support and medical involvement ................................................................ 4 Caregiver burden ..................................................................................................... 5 Understanding spillover effects .............................................................................. 6 Modifiable factors for CCS and parents’ psychosocial adjustment ................................... 7 Social support.......................................................................................................... 7 Religiosity and spirituality ...................................................................................... 8 Communication skills ............................................................................................. 9 Gaps in the literature ........................................................................................................... 9 Racial/ethnic minorities ........................................................................................ 11 Introduction to dissertation studies .................................................................................. 12 Theoretical framework .......................................................................................... 13 Figures & Tables ............................................................................................................... 15 v CHAPTER 2: STUDY 1 - ASSESSING CANCER CARE COMMUNICATION AMONG CHILDHOOD CANCER SURVIVORS, PARENTS, AND MEDICAL PROVIDERS AND THE ASSOCIATION ON CANCER-RELATED FOLLOW-UP CARE ............................. 16 Abstract ............................................................................................................................. 16 Introduction ....................................................................................................................... 18 Methods............................................................................................................................. 20 Statistical analysis ................................................................................................. 23 Results ............................................................................................................................... 25 Discussion ......................................................................................................................... 29 Strengths & Limitations ........................................................................................ 32 Conclusion ........................................................................................................................ 32 Figures & Tables ............................................................................................................... 34 CHAPTER 3: STUDY 2 – HISPANIC /LATINOS AND NON-HISPANIC WHITE’S CHILDHOOD CANCER SURVIVORS AND PARENTS: A DYADIC ANALYSIS OF APPRAISAL FACTORS ON MENTAL HEALTH ................................................................ 47 Abstract ............................................................................................................................. 47 Introduction ....................................................................................................................... 49 Methods............................................................................................................................. 52 Statistical analysis ................................................................................................. 55 Results ............................................................................................................................... 58 Discussion ......................................................................................................................... 61 Strengths & Limitations ........................................................................................ 64 Conclusion ........................................................................................................................ 64 vi Figures & Tables ............................................................................................................... 66 CHAPTER 4: STUDY 3 - BARRIERS AND FACILITATORS OF HISPANIC/LATINO PARENTS CARING FOR A CHILDHOOD CANCER SURVIVOR................................... 75 Abstract ............................................................................................................................. 75 Introduction ....................................................................................................................... 77 Methods............................................................................................................................. 78 Data analysis ......................................................................................................... 81 Results ............................................................................................................................... 82 Discussion ......................................................................................................................... 92 Strengths & Limitations ........................................................................................ 95 Conclusion ........................................................................................................................ 96 Figures & Tables ................................................................................................................98 CHAPTER 5: OVERALL DISCUSSION .............................................................................. 105 Summary of Findings ...................................................................................................... 105 Implications of Findings ................................................................................................. 107 Overall Limitations ......................................................................................................... 110 Future Research Direction .............................................................................................. 111 References .................................................................................................................................. 112 Appendix 1. Caregiver Flyer in English and Spanish ................................................................ 126 Appendix 2. Information Sheet for Qualitative Study ............................................................... 127 Appendix 3. Qualitative Instrument ........................................................................................... 129 Appendix 4. Socio-demographic Survey ................................................................................... 130 vii List of Tables Table 1. Characteristics of Parent-child dyads at baseline LCA study sample ......................35 Table 2. Model-fit indices for a latent class analysis of communication behaviors ............. 36 Table 3. Distribution of parent and child characteristic by latent classes ............................. 38 Table 4. Univariate associations and multivariable models between sociodemographic and clinical factors and triadic communication classes .........................................................40 Table 5. Univariate associations and multivariable models between communication classes and YACCS follow-up care at Survey 1 and Survey 2 ............................................. 41 Supplemental Table 1. LCA Binary Indicators ..................................................................... 42 Supplemental Table 2. Sensitivity Analyses of Multinomial Regression with Age as continuous variable ............................................................................................................... 43 Supplemental Table 3. Sensitivity Analyses of Logistic Regression with Age as continuous variable ............................................................................................................... 44 Supplemental Table 4. Differences between study responders and non-responder at Survey 2 ................................................................................................................................ 45 Supplemental Table 5. Sensitivity Analyses of Logistic Regression estimating the association between class and follow-up care with Survey 1 restricted sample ................... 46 Table 6. Demographic characteristic of CCS and parents APIM study sample ....................68 Table 7. Mean, standard deviation, and correlations of parent and childhood cancer survivors study variables and covariates ............................................................................... 69 Supplemental Table 6. CCS and Parent demographic information by Hispanic ethnicity……………………………………………………………………………………. 74 Table 8. Qualitative study participant characteristics ........................................................... 98 Table 9. Major themes of barriers and facilitators of parents caregiving for childhood cancer survivor ...................................................................................................................... 99 Supplemental Table 7. Codebook describing facilitator and barriers to caregiving…..…..100 Supplemental Table 8. Selection of Spanish quotes…………………………………....... 102 Supplemental Table 9. COREQ Checklist…………………………………………….…. 103 viii List of Figures Figure 1. Conceptual model of dissertation studies ...............................................................15 Figure 2. Conceptual model to describe Latent Class Analysis on communication behaviors among YACCS, parents, and providers without covariates................................. 34 Figure 3. Communication patterns among YACCS, parents, and medical providers ........... 37 Figure 4. Proposed conceptual models of dyadic influences of social support, religious attendance, and importance of religion/spirituality on depressive symptoms ...................... 66 Figure 5. Proposed conceptual models of dyadic influences of social support, religious attendance, and importance of religion/spirituality on perceived stress ............................... 67 Figure 6. APIM model of social support, religious attendance, and importance of religion/spirituality on CCS and Parent Depressive Symptomology .................................... 70 Figure 7. APIM model of social support, religious attendance, and importance of religion/spirituality on CCS and Parent Perceive Stress ....................................................... 71 Figure 8. APIM model of social support, religious attendance, and importance of religion/spirituality on CCS and Parent Depressive Symptomology among Hispanic and non-Hispanic dyads ........................................................................................................ 72 Figure 9. APIM model of social support, religious attendance, and importance of religion/spirituality on CCS and Parent Perceive Stress among Hispanic and non- Hispanic dyads ...................................................................................................................... 73 ix ABSTRACT The overarching goal of this dissertation was to examine the multilevel factors that impact young adult childhood cancer survivors (YACCS) and parents’ cancer care management and psychological distress; and identify factors that may alleviate or contribute to existing disparities among ethnic minorities (Hispanic/Latino) families. Dissertation studies 1 and 2 analyzed data from Project Forward. This included 160 respondents, of which reciprocal process of communication between YACCS, their parents, and their providers (a triadic approach) as all are critical players in the long-term healthcare management and engagement of YACCS. Study two used a dyadic approach to examine how interrelated YACCS-parent psychosocial health is. The third study recruited 15 Hispanic/Latino parents caring for their child diagnosed with cancer using a purposive sampling method from a safety-net hospital in Los Angeles County. We aimed to gain contextual knowledge of the barriers and facilitators that influence caregivers’ experience of Hispanic/Latino populations through qualitative interviews to help develop strategies to improve caregiving outcomes and care management. Study one found three distinct communication groups that appeared to be related to YACCS cancer-related follow-up care during Survey 1. Study two found that there are bidirectional influences of social support on depressive symptomology and perceived stress among YACSS and parent dyads. Additionally, our findings suggested that Hispanic ethnicity may moderate these relationships. Study three found that caregivers’ relationship with God or their ‘Creator’ and the medical care team, familial flexibility concerning caregiving responsibilities, and assistance with navigating financial resources were all facilitators to managing caregiving responsibilities and reducing caregiver stress. In contrast, the intersecting role of employment and immigration status was a major barrier for caregivers, which allude to how governmental policies on immigration can hinder accessing services and impact caregivers' x well-being. Collectively, the results of these three studies demonstrate that beyond individual- level factors, interpersonal relationships are important and complex for this population, which in turn may lead to healthcare engagement and better health outcomes. 1 CHAPTER 1: BACKGROUND AND SIGNIFICANCE The need for life-long follow-up care for survivors of childhood cancer Overview of childhood cancer survivorship The most common cancers in children under the age of 19 include acute lymphocytic leukemia (ALL), brain and central nervous system (CNS) tumors, and Hodgkin lymphoma. 1 Despite advancement in treatments, there continue to be variation in survival based on factors such as race/ethnicity and socioeconomic status. Differences in survival rates exist for racially and ethnically diverse children with lower survival rates. 2 In particular, there are survival disparities for non-Hispanic black, Hispanic/Latino, and Native American children diagnosed with ALL compared to non-Hispanic white children. 3-6 Racial and ethnic survival disparities persist for Hispanic/Latino and non-Hispanic black childhood and adolescent cancer patients, even for cancer types considered amenable to medical intervention. 7 Among pediatric CNS patients, Hispanic/Latino children, have an increased odds of metastatic disease at presentation and a higher risk of death, partially explained by socioeconomic status. 8 For Hispanic/Latino and non-Hispanic black children with ALL, acute myeloid leukemia (AML), neuroblastoma, and non-Hodgkin lymphoma (NHL), there was a 28% to 73% mediation effect on survival disparity due to socioeconomic status, which suggests that reducing social and economic barriers may improve survival. 9 The mediating effect of socioeconomic status may imply that lower access to resources influences access to care and contribute to these disparities. Despite these survival disparities, the number of long-term childhood cancer survivors (CCS) has increased over the past 30 years. 10,11 It is projected that there will be more than 500,000 survivors of childhood cancer living in the United States by 2020. 12 Even so, late mortality is common among adult survivors of childhood cancer; 13-16 and treatment-related 2 effects contribute to mortality, including secondary malignancies and other health conditions (i.e., cardiac or pulmonary causes). 17,18 Hispanic/Latino and non-Hispanic black long-term survivors have higher rates of all-cause mortality compared to non-Hispanic whites; however, this is also explained by their socioeconomic status. 19 Late effects and long-term impact To date, the childhood cancer survivor study (CCSS) is the largest retrospective cohort with longitudinal follow-up data in North America. 20 CCSS temporal trends demonstrate that survivors’ risk of severe chronic health conditions has decreased in recent decades. Still, these improvements differed across cancer type and chronic conditions. 21 Late effects and long-term impact of cancer treatment can include cognitive, physical, psychosocial, and quality of life (QOL) impairments. Some of these late effects include permanent organ damage such as kidney failure and liver disease, cardiovascular disease and heart failure, decreased pulmonary function, fertility problems, neurocognitive deficits (i.e., learning disabilities), and subsequent malignant neoplasms. 22,23 The health-related quality of life (HRQOL) of adult survivors of childhood cancer continues to be compromised as late effects and the long-term impact of cancer treatment increase over time. 24 Known risk factors for these late effects include tumor-related, treatment- related, and patient-related factors. Tumor-related factors consist of the type of cancer and the severity of the disease, whereas treatment-related consist of type and dose of treatments such as chemotherapy, radiation, or stem cell transplant. 25 Patient-related factors include age at the time of cancer treatment, the child’s gender, pre-existing health problems, and family history of cancer or other conditions. 25 3 There is also substantial evidence about the long-term effects of psychological distress and impaired quality of life. 26-30 For instance, compared to the general population and their siblings, childhood cancer survivors are more likely to exhibit poorer mental health. 31,32 CCS report elevated levels of posttraumatic stress symptomology, posttraumatic stress disorder, depression, and anxiety, both short-term and long-term. 33,34 Similarly, CCS report worse QOL than their siblings and the general population. 35,36 The most common predictors of QOL among CCS include older age at assessment, increased intensity of treatment, time since diagnosis, gender, and being part of an ethnic minority group. 30 Considering the high burden of morbidity and mortality, life-long follow-up care is recommended to manage and monitor CCS overall health. However, the proportion of CCS engaged in follow-up care rapidly declines with age and treatment time. 37 Additionally, a unique barrier to long-term follow-up care for survivors of childhood cancer is the transition from child to adult health care, which occurs between the ages of 18 to 25, based on the survivors’ “transition readiness”. 38 The complexity of this issue is heightened as CCS enter adulthood. They may face barriers to their long-term care needs, including the type of health insurance coverage they get, inadequate health insurance coverage, and lack of a regular source of routine care. 39-41 It is important to note that before the passing of the 2010 Patient Protection and Affordable Care Act (ACA), several systematic issues with insurance coverage contributed to survivors being uninsured or underinsured as adults. 42 Furthermore, a nationally representative study found that the annual productivity loss, which was measured by examining the excess indirect morbidity costs by employment disability, missed workdays because of health, and days spent in bed because of health for adult survivors of childhood cancer, was $8,169 per person compared with $3,083 per person for individuals without a history of cancer. 43 For these reasons, it is 4 recommended that survivors of childhood cancer receive survivorship-focused, risk-adapted medical care in which they target surveillance, prevention, and management of these late and long-term effects. 23,44 Parents' role in healthcare and long-term follow-up Parents' social support and medical involvement Parents are the primary caregivers throughout their child’s cancer journey, consisting of a broad spectrum of support, including instrumental, medical, informational, and emotional. 45 Instrumental support includes daily care tasks, such as providing transportation, attending medical appointments, and financially providing for CCS. 45 Throughout CCS treatment and into long-term survivorship, parents remained involved with medical, informational, and emotional support, often fulfilling the responsibilities of an entire cancer management team. For instance, parents provide medical support such as assisting with technical medical procedures, managing medication regimens and symptoms, monitoring child’s health; 45 and helping their child manage their late effects. 46 They are also responsible for informational support, which consists of collecting and sharing health information to their child, communicating health concerns with medical providers, coordinating cancer care, and medical decision-making. 45,47 Parents are often the primary source of emotional support for childhood cancer survivors as they help maintain “normalcy”, manage feelings of anxiety, and fear of recurrence. 48-51 Caregivers often face several barriers when completing these responsibilities, including a lack of knowledge of the system, lack of adequate resources, and in the case of some parents not speaking English. Even when CCS become young adults, parents remain involved with their medical care and play a role in helping CCS transition from pediatric to adult-focused survivorship care. 52-54 One study revealed that among parents of long-term survivors of childhood cancer, parents who 5 reported higher information needs in the domains of illness, treatment, follow-up, and late effects were more likely to be involved with their child’s follow-up care. 55 Qualitative studies of adolescent and young adult cancer survivors show that parent involvement could be both a facilitator and barrier to their transition to adult care. It was expressed that parents facilitated CCS transition of care since they were often too young to recall their cancer experience. Thus, they depended on their parents to share their medical history information with new medical providers. 53 In the same study, survivors also shared that parents could be a barrier to their transition of care, as sometimes parents did not want survivors to change their medical care to an adult doctor due to trust and established relationships they had with pediatric doctors. In another qualitative study, parents expressed concerns about playing a less active role in their child’s long-term follow-up care, their child’s willingness or motivation to follow up with cancer care needs, and the accuracy of medical information transferred to a new medical provider. 51 Yet, in a third qualitative study, young adult survivors discussed that they lacked autonomy and were disengaged with their survivorship care due to their dependence on parental support. 54 Caregiving burden Parents also assume various new roles and experience a shift in their self and social identity both immediately and long term when their child is diagnosed with cancer. 56,57 At home, it becomes difficult for parents to balance their new caregiving role, disrupting the families’ everyday routine. Parents may also experience a sense of guilt if they cannot fully care for their other children. 48,58 During the treatment phase, the caregiving demand for parents can be so high that it can create employment problems and increase financial stress. 59 The increased responsibilities and caregiving demands have also been found to impact parents’ social relationships with their spouse and family members 60 and results in parents feeling socially 6 isolated. 58,60 In a study that spanned 1 ½ years, parents who cared for CCS across the cancer continuum reported that the most challenging caregiving demand was providing emotional support to CCS. 61 As a result, when a child is diagnosed with cancer, the entire family is impacted, and their health might also be compromised. 59,62 Caregiving burden can affect parents’ QOL, especially their mental and emotional well-being. Compared to population norms, parents of CCS report poorer QOL. 63 Studies have found that mother and father’s fear of cancer recurrence for their child is associated with poorer QOL, including general well-being; 64 and that mothers that report more worries also report worse physical and social health. 65 Parents of CCS experience a range of psychological symptoms such as posttraumatic stress symptomology (PTSS) and posttraumatic stress disorder (PTSD), 33,59,66 emotional distress, 66,67 depressive symptoms, and anxiety. 59,66,68 In addition to experiencing elevated psychological distress, mothers of CCS report a prolonged need for mental health-related health care compared to the general population. 69 Increased risk of adverse mental health and QOL include younger maternal age at cancer diagnosis, rural residence, low socioeconomic status or education attainment, and being foreign- born. 69-71 Understanding spillover health effects A bidirectional relationship has been found, where a childhood illness such as a cancer diagnosis is influenced by characteristics associated with their illness and their family and social environment such as medical support they receive. 72 Thus far, existing research has focused mostly on clinical and treatment-related factors (e.g., treatment intensity, time since diagnosis, late effects) that impact CCS quality of life, whereas studies examining individual and interpersonal factors have been limited. Emerging studies show that bidirectional effects exist 7 such that parents’ psychological distress is related to illness-related burden 73 , substance use 74 , poorer QOL 30 , and mental health 75 for CCS and that Hispanic/Latino CCS may be at higher risk for such outcomes. These studies suggest that unique contextual and cultural factors may influence outcomes for Hispanic/Latino families, such as socioeconomic status, acculturation, immigration status, and linguistic aspects. Similarly, a recent study from the U.S. nationally represented panel survey found that CCS-parent dyads are especially vulnerable to HRQOL spillover effects, where CCS impacts parents’ health outcomes. 76 Modifiable factors for CCS and parents’ psychological adjustment Psychological adjustment to cancer refers to a dynamic process where an individual adopts social behaviors or coping skills to manage and sustain their health and overcome psychosocial challenges. 77 Throughout the course of the cancer trajectory, CCS and parents may experience both mental and social challenges that require continual adaptation to the cancer- induced stress. Wallander and Varni (1998) proposed the disability-stress-coping model to encompass the experiences of families of chronically ill children and identify modifiable risk and protective factors. 78 Protective factors include social-ecological variables such as social support and stress processing variables such as the appraisal of a stressor through the practice of coping strategies. Social Support Socio-ecological factors such as the role of social support have been studied extensively and support the notion that increased support is related to lower psychological distress and better well-being for both CCS and their parents. 29,47,58,59 For parents, their primary source of support comes from their partner/spouse; 58 while for CCS, their primary source of support comes from their parents. 47 Additionally, a significant source of emotional and informational support is 8 received from other survivors, caregivers, and medical providers. 60,79 For both CCS and parents, higher emotional and instrumental family support (i.e., assist with childcare, transportation) is related to better psychological adjustment. 58 Additionally, greater social support is associated with greater caregiver use of positive spiritual coping. 80 Some parents and CCS report that they experience a decline in social support once treatment ends. 46,47 Among caregivers of long-term survivors, mothers were more likely to need more support immediately after the treatment phase, while parents whose child was dependent on them and who experienced late effects were more likely to report currently needing more support. 81 Religiosity and Spirituality Stress-processing factors utilize cognitive and behavioral strategies, such as religious and spiritual coping. Recently, research examining the role of religious and spiritual coping in childhood cancer care has been expanding. Studies suggest that these factors may help improve psychosocial adjustment throughout the cancer trajectory. 82,83 For both parents and CCS, religious coping includes strengthening their relationship with God, usually through the act of prayer, which is an essential source of support in coping with cancer. Similarly, spiritual coping focuses on broader aspects of religion, such as finding peace and “meaning-making,” which has been found to help survivors and caregivers adapt positive mental attitudes about the cancer experience. Caregiver coping style is influenced by gender, such that mothers report using religious coping more than fathers; 84 however, within the qualitative literature fathers of long- term CCS report experiencing spiritual change as a result of their child’s cancer diagnosis by growing “closer to God” and “strengthening their faith”. 85 Similarly, among adult survivors of childhood cancer, female survivors are more likely to indicate a positive impact on religiosity 9 compared to male survivors. 86 Parents positive religious and spiritual coping are associated with greater post-traumatic growth for CCS 73 and benefit finding for caregivers. 80,84 Communication skills Interpersonal communication is a crucial component of the cancer experience that can contribute to the management of cancer care and can improve QOL. Effective communication can enable better adjustment throughout the cancer trajectory. 87 This triad of communication between childhood cancer survivors, parents, and medical providers has demonstrated an association with exchanging information, making decisions, fostering healing relationships, and responding to emotions. 88 High-quality information sharing is associated with greater parental trust in medical providers, greater CCS and parent knowledge which enhances self-management strategies, and supports the effective transition to adult healthcare. Essential communication practices included empathy, sensitivity and compassion, fostering healing relationships, and helping provide emotional connection and support. 88,89 A key factor related to a successful transition of and retention in care is effective communication among CCS, medical providers, and parents. 90 It is known that there are issues with miscommunication or inadequate communication between this triad, which can lead to a lack of information-sharing and knowledge about the need for life-long care. 90 Further, treatment summaries and recommendations for follow-up care, also known as survivorship care plan (SCP), are meant to help coordinate care and enhance patient-provider communication. 91 However, there are problems with the implementation of SCP. Therefore, there is a need to improve understanding of survivorship care communication and management between patients, families, and providers. 92 Gaps in the literature 10 The scientific literature of adult survivors of childhood cancer and parental caregivers is evolving; however, there remain gaps in the psychosocial adjustment and management of cancer care. Current research suggests that parental influence is associated with a child’s biopsychosocial functioning, including social-emotional, physical, and mental health. 93 While it is evident that a child’s cancer diagnosis can affect the families’ mental health, little is known about young adult survivors and parent dyadic processes, 94 especially among racial/ethnic groups. Existing research of survivor-caregiver dyads has predominantly focused on adult cancer survivors and spousal caregivers within non-Hispanic white populations. While this research has implications for adult survivors of childhood cancer and parents, much remains to be learned about contextual and cultural factors such as race/ethnicity, socio-economic status, and language. CCS-parent dyads have unique cancer experiences and needs, particularly after the posttreatment phase, which can impact dyadic processes such as psychosocial health outcomes, communication, and management of cancer care. While limited, some dyadic research demonstrates that CCS-parent health and adjustment after treatment are interdependent. Findings include that parents’ depressive symptoms are associated with CCS perception of family functioning, 95 parents’ impulsive behavior is associated with CCS depressive symptoms, 96 and adolescent and young adult (AYA) patients' subjective illness severity is associated with caregivers' PTSS. 97 The broader development of the literature of survivor and spousal caregiver dyads has documented that interdependence exists between patient and caregiver physical morbidity; psychological morbidity at diagnosis, treatment, and survivorship; and between patient physical morbidity and caregiver psychological morbidity. 98 The oncology literature also suggests that dyads that develop adaptive processes including greater cancer-related communication, spiritual well-being, partner support, and extended social networks are 11 associated with restoring balance in relationships, experiencing less distress, and greater relationship satisfaction. 99 Studies focusing on dyad communication have predominantly focused during the time of diagnosis 100 and between CCS-parent or parent-provider; 88 however, a range of health information needs to be relayed between this triad after the treatment phase and throughout survivorship. Recently, AYA patient-provider communication about survivors’ health, late effects, and the risks and need for screening were found to be associated with higher rates of adherence to surveillance guidelines and engagement in long-term follow-up care. 101,102 This is not surprising since the existing literature suggests that adult survivors of childhood cancer lack awareness about long-term side effects and risk of treatment late-effects, which can impact their engagement in long-term follow-up care. 103-106 Yet, little is known about the communication behaviors regarding survivorship care and the need for long-term follow-up care between this triad. The literature that does exist is primarily qualitative and not among diverse populations. Racial/ethnic disparities A growing body of literature also reveals disparities in survivorship care utilization among racial or ethnic minorities. 20,52,107,108 Hispanic/Latino CCS are less likely to remain in care than non-Hispanic white CCS, which is concerning as Hispanic/Latino CCS experience a substantial degree of psychological distress, impaired quality of life, and are more likely to experience barriers in survivorship care utilization compared to non-Hispanic whites. 18,19 When examining racial/ethnic disparities, it is important to integrate other related factors such as socioeconomic status, language preference, and acculturative stress. In some cases, after accounting for socioeconomic status, race and ethnicity are no longer associated with adverse health outcomes and all-cause mortality. 19,109 Additionally, language barriers such as parent- 12 provider discordance in pediatric cancer care may impact the understanding of cancer, quality of care (e.g., understanding care instructions, medication use), and knowledge of future needs and care management. 110 A recent study assessed language preference and caregiver experience of CCS, finding that Spanish-speaking caregivers experience greater barriers to care, have greater knowledge gaps about child’s treatment, and experience a greater impact on employment than English-speaking caregivers. 111 Therefore, these findings reveal that these disparities are multifactorial and may be an issue of access to care and available resources, indicating that we also need to explore barriers and facilitators unique to this vulnerable population. Introduction to dissertation studies It is increasingly recognized that cancer impacts the lives of individuals and their families; this is especially true for childhood cancer survivors. Existing research has demonstrated that both CCS and parents' health are affected, particularly their mental health. Yet, the interdependent nature of cancer, which requires parents to be engaged throughout the cancer trajectory of CCS, is understudied. It is necessary to use a dyadic approach to examine how CCS-parent dyad health is interrelated and the reciprocal process of communication between CCS-parent-providers as they are all key players in long-term healthcare management and engagement of CCS. Furthermore, we must gain contextual knowledge on the barriers and facilitators that exist for minority populations, as they are at increased risk of experiencing poorer QOL. Ultimately, it is well known that there are disparities in QOL and survivorship care among racial/ethnic minorities, socioeconomic status, and based on language preference; however, there is a lack of literature that contextualizes the many factors contributing to these existing inequities. Few studies explore aspects such as culture, language, and health literacy in 13 the healthcare system, which are important to consider and further understand as they can contribute to or mitigate health disparities. Furthermore, no longitudinal studies examine how the parent-child relationship may function differently according to race/ethnicity or language preference. The proposed studies address this gap in the literature by examining parental associations with young adult CCS outcomes among diverse populations. Study 1 and 2 analyze data from Project Forward. 52 This cross-sectional study used cancer registry/population-based survey methods to examine long-term follow-up care among young adult survivors of CCS and their parents. Study 3 recruited Hispanic/Latino parents of children diagnosed with cancer from LAC + USC Medical Center. Theoretical framework The conceptual framework (Figure 1) guiding my dissertation research studies applies different aspects of the Theory of Dyadic Illness Management, which focuses on how survivor- caregiver dyads manage cancer, share appraisal, and their collaborative management of cancer optimizes dyads’ health. 112 The application of this theory helped understand how appraisal and management influence mental health outcomes and CCS health-seeking behaviors. Study one of this dissertation focuses on dyadic management, which encompasses how CCS-parent dyads communicate to manage cancer-related care. This aim examines the association between triadic cancer care communication among CCS, parents, and medical providers, the influence on CCS cancer-related follow-up care; and whether these relationships differ by parent ethnicity and language preference. In particular, understanding which triad members (among CCS, parents, and medical providers) are engaged in cancer care communication and about what. 14 Study two of this dissertation focuses on dyadic appraisal, specifically the concepts of social support, religiosity, and spirituality, which are conceptualized as important coping strategies to understand illness appraisal. In particular, these two concepts were treated as secondary appraisals based on Lazarus' transactional model of stress, which indicates individuals evaluate their available resources (i.e., social support and spirituality) and has been found to influence mental health outcomes. 113 This aim examined the reciprocal effects of perceived social support, religiosity, and spirituality on depressive symptomology and stress among Hispanic/Latino and non-Hispanic whites’ parent-child dyads. Study three of this dissertation extends previous research on Hispanic/Latino caregiver experiences by exploring in-depth the perceived barriers and facilitators of parents in a safety-net clinic who are the primary caregivers throughout their child’s cancer journey. While there have been studies published on Hispanic/Latino caregivers of older adults, there has been little published on identifying the barriers and facilitators of caregiving experiences of parents. Given the intersecting complexities of this safety-net children’s clinic in Los Angeles, which serves primarily Hispanic, recently immigrated, Spanish-speaking, and Medicaid population, it is important to assess whether this vulnerable population has unique barriers and facilitators from previously published literature. 15 Figure 1. Conceptual model of dissertation studies 16 CHAPTER 2: STUDY 1 - ASSESSING CANCER CARE COMMUNICATION AMONG YOUNG ADULT CHILDHOOD CANCER SURVIVORS, PARENTS, AND MEDICAL PROVIDERS AND ASSOCIATIONS WITH CANCER-RELATED FOLLOW-UP CARE ABSTRACT Background: The triad of communication between young adult childhood cancer survivors (YACCS), their parents, and their medical providers is important in managing healthcare engagement. This study sought to identify communication patterns among this triad, factors associated with communication, and engagement of survivorship care. Methods: We analyzed data from Project Forward, a population-based study that surveyed YACCS and their parents. YACCS were on average 20 years of age, seven years from diagnosis, 50% female, and 57% identified as Hispanic/Latino (N=160 dyads). Latent class analysis (LCA) of nine communication indicators from parent and YACCS surveys identified distinct communication classes between YACCS, parents, and medical providers. Associations between resulting classes and YACCS/parent characteristics were examined using multinomial logistic regression. Logistic regression was used to examine the association between communication classes and cancer-related follow-up care. Results: LCA identified three classes of triad communication: (1) high healthcare-focused communication (37.5%); (2) high comprehensive communication (15.6%); and (3) overall low communication (46.9%). After adjusting for covariates, greater time since diagnosis was associated with reduced odds of membership in class 2, while dyads with Spanish-speaking Hispanic parents were more likely to be in class 2 (vs. class 3). Additionally, YACCS who were in either of the high communication groups were more likely to have received recent follow-up care. 17 Conclusion: Examining language preference provides an important contextual understanding as we found Spanish-speaking Hispanic parents engaged in high communication, which was associated with cancer-related follow-up care. Yet, our results also support the need to develop and test culturally and language-specific interventions to enhance communication between this triad to improve outcomes. 18 INTRODUCTION Effective communication between young adult childhood cancer survivors (YACCS), their parents, and their medical providers is important for optimal cancer care management. Written and oral communication among this triad supports the exchange of information, coordination of care, and helps foster relationships. 88 This is particularly true for YACCS who prefer open communication 114 as it ensures consistent information sharing, which provides a source of informational and emotional support 115 , and supports healthcare self-management. 116 Miscommunication or inadequate communication between this triad can hinder cancer management due to, for example, insufficient information or being misinformed. Communication challenges that survivors encounter are: not being included in decision making, being provided with vague recommendations about long-term follow-up, and parents’ avoidance in discussing late effects with their children. 88,100,117 With Hispanic/Latino populations, there may be additional challenges as it has been found in prior studies that YACCS and parents are more likely to receive health information from hospital resources compared to non-Hispanic white populations. 118,119 Language barriers can greatly impact effective communication, and language preference in pediatric cancer care may influence communication behaviors and how those behaviors may contribute to or mitigate health disparities. For instance, parent-provider language discordance in pediatric cancer care may impact the understanding of cancer, quality of care, and knowledge of future needs and management of care. 110 A recent study found that Spanish-speaking caregivers have greater knowledge gaps about child treatment than English-speaking caregivers. 111 Language and literacy may also act as a barrier for written and oral communication about survivorship follow-up care for Hispanic/Latinos. 39 19 Conversely, language and acculturation are factors that influence Hispanic/ Latinos health and healthcare use, and most recently, cancer outcomes. 120 Acculturation is a multidimensional process by which typically a minority group adopts the cultural elements of the dominant society such as attitudes, norms, practices, values, and language. 121 Recently, Tobin et al. (2020) found that among YACCS, individual and neighborhood level acculturation was associated with health care use. Survivors with higher Hispanic cultural orientation reported higher rates of cancer-related follow-up care. 122 Further, we know that for Hispanic/Latinos’ language factors may play an important role in patient-physician communication, treatment decision making and satisfaction, familiarity with the health care system, and access to healthcare. 120 Moreover, in our previous work, we found that Spanish-speaking caregivers reported communicating about follow-up care with young adult childhood cancer survivors at higher rates than non-Hispanic English-speaking parents. 119 Ultimately, studies have shown that YACCS and parents report unmet information needs, especially regarding the late effects of cancer treatment and the need for life-long follow-up care. 90,123,124 Studies examining the triad of communication between YACCS, parents, and medical providers have been among non-Hispanic white population and demonstrate that communication may be necessary for motivating YACCS healthcare engagement. In one study, parents of long-term survivors reported that receiving high-quality information and communication with their child’s oncologist made them feel more prepared to deal with YACCS late effects. 105 Other studies revealed that communication between the medical team, YACSS, and parents about the transition process, follow-up plan, and late effects symptoms were important for a successful transition from pediatric to adult-centered survivorship care and engagement in long-term follow-up care. 53,117,125 Yet, these studies are limited in that they do not 20 explore these relationships among Hispanic/Latino populations, and the one study that focused on Hispanic/Latino survivors and parents was a qualitative study. We sought to examine communication patterns among a diverse sample of YACCS. We first sought to characterize communication patterns among YACCS, parents, and providers using latent class analysis (LCA). LCA statistical techniques are part of finite mixture models, a “person-centered” approach that uses the common response patterns of individuals on specified categorical indicators to model “unobserved subgroups” of people into heterogenous latent classes. 126 We then tested associations between sociodemographic and clinical variables with identified groups or latent classes of triadic cancer care communication (i.e., between YACCS, their parents, and their providers). We hypothesized that YACCS younger age, male sex, less intensive treatment, and greater time since diagnosis would be associated with belonging to a class characterized by low communication. Additionally, in an exploratory fashion, we hypothesized that these relationships would differ by parent ethnicity/language such that Spanish (vs. English) speaking parents would belong to a group characterized by high communication. Finally, we tested the association of the identified classes with YACCS cancer-related follow-up visits during two assessment time points because it is recommended that YACSS receive life-long follow-up care. We hypothesized that these distinct groups of triadic cancer care communication would be associated with YACCS follow-up visits, such that belonging to a high communication group would be related to greater use of follow-up visits at both time points. METHODS Participants and procedure The present study uses data from the Project Forward pilot study and those who participated in the subsequent Project Forward cohort study, utilizing population-based survey 21 methods. 52,127 Participants were selected from the Los Angeles Cancer Surveillance Program, The Surveillance, Epidemiology, and End Results (SEER) cancer registry data. Inclusion criteria included YACCS diagnosed before the age of 18; were treated between 2000-2007 at two children’s hospitals; were diagnosed with any cancer except for Hodgkin lymphoma; and could read and write in English and/or Spanish. All participants involved in these studies provided active assent/consent according to procedures approved by the California Committee for the Protection of Human Subjects, California Cancer Registry, and human subjects’ committees at the University of Southern California, Children Hospital of Los Angeles, and Miller Children’s Hospital. YACCS participants from the pilot study were between the ages of 1625 years in 2009- 2010 (Survey 1) that were followed up with in 2015-2017 (Survey 2) and were between 21-32. There was a mean time between surveys of 5 years. At Survey 1, health-related risk and protective factors among childhood cancer survivors and parental distress were collected. At Survey 2, participants included in the analysis were 94 emerging adults YACCS. Measures Communication variables As part of the Project Forward pilot study, Survey 1 was administered to YACCS and their parents. Six questions asked of parents and three questions asked of YACCS measured communication about future health care needs, parent-child communication, and communication with medical providers as reported by both YACCS and parents during Survey 1 to be used as latent class indicators (Full questions presented in Supplemental Table 1). Three questions asked parents about their communication with their children. Specifically, the questions asked if parents talked with YACCS about their cancer experience, 22 health insurance, and follow-up care. Each question was scored on a 3-level scale with responses including (0) never, (1) occasionally, and (2) often. These three items were dichotomized and coded as 0 for “never/occasionally” and 1 for “often”. This classification method differentiated between higher communicators or lower/never communicators. Four questions asked YACCS and parents whether they had discussions about YACCS's future health care needs. Two questions were answered by the parent and two questions by YACCS to determine whom YACCS or parent were having these discussions with. Each question was scored on a 3-level scale with responses including (0) no, (1) yes, and (2) not sure. These four items were dichotomized and coded as 0 for “no/not sure” and 1 for “yes”. Similarly, two questions were asked about parent and YACCS communication with a provider through the acquisition of a written summary of cancer treatment. Parent and YACCS answered the same question, asking whether they had ever been given a written summary of cancer treatment. Each question was scored on a 3-level scale with responses including (0) no, (1) yes, and (2) not sure. These two items were dichotomized and coded as 0 for “no/not sure” and 1 for “yes”. Independent variables The following covariates were selected for their theoretical significance and prior literature. Parent Demographics –– Parents' ethnicity and language variable had the following categories: (1) Spanish speaking Hispanics, (2) English speaking Hispanics, and (3) English speaking non-Hispanics. For purposes of this analysis, this variable was dummy coded. Child Demographics and clinical information –– Child’s age at survey administration (16-26 years), sex (female or male), time since diagnosis (2-11 years), treatment intensity 23 classification using the Intensity of Treatment Rating Scale 2.0 (ITR-2), 128 and health insurance. YACCS's current age at the time of the survey was dichotomized, similar to other studies to less than 21 years and 21 years or older. This distinction represents the age at which YACCS transitioned from pediatric to adult survivorship care is also a critical period of young adulthood development. Dependent/distal outcome Cancer-related follow-up care –– Based on the Children’s Oncology Group (COG) Guidelines, 129 a similar item from the Childhood Cancer Survivor Study 130 was used. Responses were dichotomized to reflect if YACCS reported having received cancer-related follow-up care for both surveys within the past two years. Statistical analysis Data cleaning and descriptive analyses were conducted using SAS Version 9.4. 131 Latent class analysis (LCA) was performed using Mplus Version 8.0. 132 The LCA model starts with the assumption that indicators are conditional independent on class membership, meaning that latent class memberships explain all shared variance among the indicators. 133 LCA was first performed without covariates and distal outcome (i.e., “unconditional latent model”) and we examined sequentially fitted models from one to k classes to determine the best model fit. 133-135 To ensure a global solution, each class model was replicated using multiple start values and different random starts. In addition, model interpretability and theoretical meaningfulness were also considered in selecting the best fitting model. 136 Missing data was handled using the full information maximum likelihood method (FIML) and latent class variables were treated as missing at random (MAR). 24 Class characteristics were evaluated using several fit indices to assess the best model fit for the multiple LCA models. The following information criteria were used to compare relative fit of the models: Akaike information criterion (AIC), Bayesian information criterion (BIC), the sample-size adjusted Bayesian information criterion (SSA-BIC), Consistent Akaike’s Information criterion (CAIC), and the Approximate Weight of Evidence (AWE), where a lower value implies a better fit. 135,137 Relative Improvement (RI) was used to show which class has the greatest change between two models. 138 The Lo-Mendell-Rubin (LMR) was used to compare model improvement with additional classes (k vs. k + 1). Finally, the bootstrapped likelihood ratio test (BLRT) was used to gather the p-value. 137 Classification quality was evaluated with entropy, an evaluation index, modal class assignment proportion (mcaP), the average posterior probabilities (AvePP), and the odds of correct classification (OCC). We assessed class separation using an adaption of Cohen’s d test and class homogeneity by evaluating conditional probability for the three classes (item probabilities of <0.30 or >0.70 were considered strong indicators of class membership). 139,140 Covariate and Distal Analyses Lastly, the manual three-step approach was used to test the structure model by adding covariates and a distal outcome separately. Specifically, to address the study objectives, we: (1) classified individuals into latent subgroups based on their modal class assignment, (2) used the new modal class assignment variable to examine the association with our covariates; and (3) examined the association with our distal outcome (see Figure 2). The relationship between the three-communication class memberships and covariates, including parent ethnicity/language, YACCS demographic and clinical characteristics were evaluated using univariate and multivariable multinomial logistic regression analysis. Because the parent ethnicity/language 25 preference variable was composed of three categories, this item was dummy coded into three variables of which two were included in the final model. Univariate and multivariable logistic regression was similarly used to examine the association between communication class memberships and YACCS engagement with follow-up care in Survey 1 and 2. For this analysis, communication class was dichotomized as the two categories that endorsed communication versus the category that endorsed low communication as both high communication groups endorsed communication about future health care needs, which is relevant to follow-up care. We included all hypothesized variables that were associated with our communication variable based on previous literature, including YACCS age, sex, treatment intensity, time since diagnosis, health insurance, and parent ethnicity/ language as covariates for this analysis. Sensitivity analysis Several sensitivity analyses were performed. The first test examined sensitivity to variable coding. Regression analyses were conducted, including YACCS age as a continuous variable to assess whether results in our final models differed to age dichotomized (<21 and >21 years). Secondly, due to low retention rates from Survey 1 and 2, we examined differences in sociodemographic variables between responders and non-responders of Survey 2. Third, we restricted our study sample to the 94 dyads from Survey 2 in our final models to assess whether the results differed. RESULTS Descriptive data and class selection A total of 160 parent-child dyad respondents were included in the present study (see Table 1). At baseline (Survey 1), YACCS were on average 20 years of age, seven years from diagnosis, and 50.0% female. Among parents, the average age was 49 years, 89% were females, 26 and more than half (57%) self-identified as Hispanics (n=91). Specifically, 29% were Spanish- speaking Hispanics, 28% were English-speaking Hispanics, and 43% were English-speaking non-Hispanics. LCA grouped parent-child-provider triads into three classes: (1) high healthcare- focused communication (n=60, 37.5%); (2) high comprehensive communication (n=25, 15.6%); and (3) overall low communication (n=75, 46.9%). We found the three-class solution the optimal explanation. It provided lower AIC and BIC, high entropy, and LMR test comparing 2 versus 3 class model and the 4-class solution showed an increase in BIC compared to the 3-class solution (1803.76 vs. 1798.47) (see Table 2). The high healthcare-focused communication class was characterized by patterns of high probabilities (>0.70) for communication about future health care needs among YACCS, parents, and medical providers but a low probability of endorsing all other parent-child communication about cancer experience, cancer-related follow-up care, and health insurance issues (Figure 3). The high comprehensive communication class was characterized by high probabilities for communication about future health care needs and high probabilities for parent-child communication about different cancer facets, including YACCS cancer experience, cancer- related follow-up care, and health insurance issues. The overall low communication class was characterized by low probability (<0.30) of endorsing any communication items. Within the high healthcare focus communication class, YACCS had a higher proportion of health insurance and parents had higher education levels than those in the high comprehensive and overall low communication class (Table 3). The high comprehensive communication class had a higher proportion of foreign-born, Spanish-speaking Hispanic parents who had lower incomes, and in which YACCS lived with parents. Those in the overall low communication had 27 older parents (mean age: 50 years), had a higher proportion of parents that were widowed, divorced or separated, and had higher proportion of YACCS not living with parents. Association between Predictors and Communication Classes The associations between our predictors (e.g., parent ethnicity/language, YACCS demographic, clinical characteristics) and the three-class communication outcome were examined using multinomial logistic regression (Table 4). In univariate associations, which indicate how each covariate is independently associated with the communication groups, we found that time since diagnosis and parent ethnicity/language were marginally significant (both p <0.10). Greater time since diagnosis was associated with reduced odds of membership in the high comprehensive communication (class 2) in comparison to the overall low communication group (class 3) [OR=0.80, 95% CI=0.64, 1.00]. Additionally, dyads with Spanish-speaking Hispanic parents were more likely to be in the high comprehensive communication (class 2) in comparison to the overall low communication group (class 3) [OR=2.92, 95% CI=0.94, 9.02]. In the adjusted multivariable model, we found that Spanish-speaking Hispanic parents and English- speaking Hispanic parents had a stronger positive association with being in class 2 (vs. class 3) in comparison to English-speaking non-Hispanic parents [AOR=2.9 and 2.6 respectively, both p<0.10]. Exploratory analysis of follow-up care Univariate regression analyses indicated treatment intensity [OR=1.90, 95% CI=1.18, 3.04] and being insured [OR=4.29, 95% CI=1.95, 9.44] were positively associated with recent follow-up care at Survey 1, while being 21 years and older [OR=0.33, 95% CI=0.16, 0.70] was negatively associated (Table 5). YACCS who belonged to the high communication class was marginally associated with recent follow-up care at Survey 1 [OR=2.04, 95% CI=0.97, 4.28, 28 p=0.06]. Additionally, only female gender was positively associated with follow-up care at Survey 2 [OR=4.26, 95% CI=1.60, 11.40]. In multivariable analyses, greater treatment intensity was associated with greater odds of recent follow-up care at Survey 1 [AOR=1.89, 95% CI=1.07, 3.31, p = 0.03, Table 5]. YACCS who were insured were more likely to have received recent follow-up care at Survey 1 [AOR= 4.20, 95% CI=1.65, 10.67, p = 0.002]. YACCS 21 years and older were less likely to have received recent follow-up care at Survey 1 [OR=0.32, 95% CI=0.13, 0.79, p = 0.01]. While in models of recent follow-up care at Survey 2, only female sex was associated with greater odds of recent follow-up care [OR= 4.26, 95% CI= 1.60, 11.40, p = 0.003]. Additionally, YACCS who belonged to the high communication group were more likely to have had recent follow-up care (within the past two years) at Survey 1 after adjustment for all covariates although this finding was marginally significant [AOR= 2.04, 95% CI=0.86, 4.85, p = 0.10]. Sensitivity Analysis As a sensitivity analysis, our final models were run with YACCS age as a continuous variable. All of the multivariable model results were consistent and in the same direction (see Supplemental Table 2 and 3). When we examined the univariate relationships between sociodemographic characteristics and study responders/non-responder at Survey 2, the only significant difference was YACCS who were 21 years of age or older and were more likely to respond (41.5% vs. 25.8%, p=0.04) (Supplemental Table 4). However, as an alternative way to account for differences in attrition between Time 1 and 2, we limited our study sample to the 94 dyads, and we explored the association between communication and recent follow-up care at Survey 1 (see Supplemental Table 5). We found similar results that YACCS age was negatively associated with recent follow-up care and health insurance was positively associated with follow- 29 up care, but communication and treatment intensity was no longer associated with recent follow- up care. DISCUSSION There is limited research on communication experiences within the cancer continuum (e.g., during treatment, after treatment, long-term survivorship), which has mainly focused on patient-physician communication among a non-Hispanic white population. In this study, over half of our sample were Hispanic/Latino parent-child dyad (an understudied population). The goal of our study was to provide insight into the communication patterns among a diverse sample. The LCA approach identified three distinct classes of communication patterns among young adult childhood cancer survivors, parents, and medical providers. These cancer care communication groups were high healthcare-focused communication, high comprehensive communication, and overall low communication. Our results reveal that communication about cancer care was lacking in nearly half of the sample. Greater time since diagnosis and dyads with Spanish-speaking Hispanic parents were associated with belonging to the high comprehensive communication group. Additionally, our findings indicate that YACCS who belonged to the high communication group were more likely to have had recent follow-up care. Our findings provide evidence that a large group of YACCS, parents, and medical providers have low communication about future health care need, cancer-related follow-up care, and health insurance issues (approximately 47% of the sample). Because the average age of YACCS in this sample was 20 years old, these results are concerning considering that this is the typical age for transfer from the pediatric to the adult care setting (as this transition usually happens between the ages of 18 to 21 at the hospitals included). 141 Barriers to transitioning to adult care among YACCS include lack of awareness about long-term side effects and late-effects 30 risk of treatment, which can impact their engagement in long-term follow-up care. 103-106 Thus, robust communication among YACCS, parents, and medical providers is important and necessary to ensure appropriate knowledge and understanding about the long-term effects of cancer for YACCS. LCA identified two classes for high communication patterns. About a third of the sample belonged to the high healthcare-focused communication group where all triad members communicated about YACCS's future health care needs. A recent study suggested that communication can help better understand the disease and treatment history and foster active involvement in decision-making to transition to adult care for emerging adults of YACCS. 54 On the other hand, only 15.6% of our sample belonged to the high comprehensive communication group that included discussions about future health care needs, YACCS cancer experience, cancer-related follow-up care, and health insurance issues. The distinction between these groups might have emerged because some parents may not be comfortable discussing their children’s cancer experience and health insurance. However, communication about health insurance issues or the costs of care is important as it enables patients and their families to plan and budget adequately for medical expenses, which may help mitigate the financial burden of cancer care and improve patient outcomes. 142-144 Furthermore, while there is a lack of research about parent and YACCS communication patterns, Murphy et al. found that mothers’ post-traumatic stress symptoms is associated with withdrawn communication. 145 Thus, parents may not participate in these discussions with their children due to ongoing trauma related to their child’s cancer experience. These distinct communication groups underscore the need to improve communication skills during survivorship, demonstrating the need for these communication trainings to be wide-ranging in topics discussed. 31 Our results revealed that dyads, where parents were Spanish-speaking Hispanics, tended to engage in high communication. This relationship was not explained by YACCS age, sex, treatment intensity, time since diagnosis, or health insurance, suggesting that other factors need assessment. Thus, examining language preference provides an important contextual understanding as it supports the notion that Hispanic/Latino cultural values may play a favorable or protective role for high levels of communication. For example, the influence of Hispanic/Latino cultural values such as familismo on communication is supported by the work of Ashing-Giwa et al., which demonstrates that it can facilitate familial social support and is associated with the decision-making process among breast cancer survivors. 146,147 Thus, the cultural role of familismo may be positively associated with parent-child communication experiences, such that having these embedded cultural values supports close interdependent relationships and frequent communication between the two, especially for information sharing. Follow-up studies with larger sample sizes are needed to examine the role of familismo and other cultural elements that may help explain the protective effects found in our study. Additionally, our findings highlight a positive relationship between YACCS in any of the high communication group with receiving recent follow-up care at Survey 1. This relationship likely reflects that greater communication between this triad benefits YACCS in terms of improved knowledge and understanding about the long-term effects of cancer. Moreover, this communication may also support parents' understanding and contribute to their involvement in YACCS cancer management as they enter young adulthood (the majority of YACCS in the sample were less than 21 years of age). Consequently, YACCS might benefit from increased communication which can improve guideline-recommended follow-up care, quality of life, and ultimately survival. 102 32 Strengths and Limitations The strengths of this study include a linguistically diverse sample of Hispanic/Latinos. The use of latent class analysis is a person-centered approach that identifies unobserved subgroups of people. Limitations of this study include the sample reflecting participants from two large urban children’s hospitals in Southern California; therefore, results may not be generalizable to other regions. Secondly, while we have a relatively large representation of Hispanic dyads, there may be additional important characteristics in participants not captured in our sample (e.g., heritage subgroup). Lastly, this study has a limited sample size, particularly for the Survey 2 analyses. Therefore, future research is needed to replicate findings among larger sample sizes, from participants with different backgrounds and various geographical areas and healthcare settings. CONCLUSION The findings from the current study have important implications for understanding communication patterns and improving engagement with survivorship care based on race/ethnicity and a linguistically diverse sample. We identified three communication classes in a sample of YACCS-parent dyads. The largest class included those with low communication patterns and the remaining sample was divided between two classes for high communication patterns. As a result, this study provides important evidence to enhance communication among YACCS, parents, and providers resulting in improved knowledge and understanding about the long-term effects of cancer and treatment. Additionally, if validated, our 3-class communication as identified by LCA can help target interventions to dyads most at risk of low communication. Furthermore, our results show that future research is needed focusing on Hispanic/Latino populations, as Spanish-speaking dyads demonstrated to be involved in higher and more comprehensive communication. Likely components may include specific cultural influences such 33 as family and social network relationships, familismo, and health beliefs. By understanding the factors that organically encourage communication, we may also be able to develop culturally specific interventions. Implications for future research should use a longitudinal design to test these relationships and it should also adopt a mixed-method approach to explore the trajectory of communication pattens. Lastly, due to the COVID-19 pandemic, there have been adaptations to clinical care such as the increased use of telemedicine, and thus, it would be important to assess the frequency and topics discussed by survivors, parents, and medical providers. 34 Figure 2: Conceptual model to describe Latent Class Analysis on communication behaviors among young adult childhood cancer survivors, parents, and providers with covariates. 35 Table 1. Characteristics of Parent-Child Dyads at baseline (n=160) N, % or M, SD Parent’s age, range 34-69 years 48.8 (6.7) Parent’s ethnicity/language Hispanic Spanish speaking Hispanics English speaking Non-Hispanic English speaking 47 (29.4%) 44 (27.5%) 69 (43.1%) YACCS age at survey, range 16-26 years 20.3 (2.9) YACCS sex Male Female 79 (49.4%) 81 (51.6%) Time since diagnosis 7.4 (2.1) Treatment intensity 1 2 3 4 16 (10.1%) 53 (32.7%) 76 (47.8%) 15 (9.4%) 36 Table 2. Model-fit indices for a latent class analysis of communication behaviors (n=160) Class No. LL # parameters AIC BIC SABIC CAIC AWE RI LMR p-value BLRT p-value Entropy 1 -890.013 9 1798.03 1825.70 1797.21 1834.70 1898.38 -- -- -- 1 2 -853.649 19 1745.30 1803.73 1743.58 1822.73 1957.15 -- 0.003 <.001 0.74 3 -825.647 29 1709.29 1798.47 1706.67 1827.47 2032.65 0.77 0.09 <.001 0.81 4 -812.465 39 1702.93 1822.86 1699.40 1861.86 2137.79 0.36 0.18 <.001 0.89 Abbreviations. AIC: Akaike’s Information Criterion; BIC: Bayesian Information Criterion; SABIC: Sample-size Adjusted Bayesian Information Criterion; CAIC: Consistent Akaike’s Information criterion; AWE: Approximate Weight of Evidence; RI: Relative Improvement; LMR: Lo-Mendell Rubin p-value; BLRT: Bootstrapped likelihood ratio test (BLRT) p-value. Notes: The three-class model was chosen based on the AIC and BIC values, relative improvement value, and taking into consideration class interpretation. 37 Figure 3. Communication patterns among YACCS, parents, and medical providers Note. Pa-C= Parent-Child communication; C-P= Child-Provider communication; Pa-P=Parent-Provider communication; C-Pa= Child-Parent communication. The class endorsement probability are the item-response probabilities for each of the nine-communication indicator based on the class they were grouped into. Low item-response probabilities (<0.30) indicate a low probability of endorsing the specific communication item (e.g., selecting no). High item-response probabilities (>0.70) indicate a high probability of endorsing the specific communication item (e.g., selecting yes or often). 38 Table 3. Distribution of parent and child characteristic by latent classes (n=160) Variable High comprehensive communication (n=25) High healthcare- focused communication (n=60) Overall Low Communication (n=75) Parent’s age at survey, M (SD) 45.7 (5.1) 48.4 (6.7) 50.1 (6.9) Parent’s ethnicity/ language, n (%) Hispanic Spanish speaking Hispanics English speaking Non-Hispanic English speaking 11 (44.0%) 8 (32.0%) 6 (24.0%) 14 (23.3%) 18 (30.0%) 28 (46.7%) 22 (29.3%) 18 (24.0%) 35 (46.7%) Parent marital status, n (%) Single Married/Marriage-like Widowed/Divorced/Separated 5 (20.8%) 16 (66.7%) 3 (12.5%) 9 (15.3%) 42 (71.2%) 8 (13.6%) 10 (13.5%) 50 (67.6%) 14 (18.9%) Parent education level, n (%) <12 years High school/GED (12 years) >12 years 13 (54.2%) 4 (16.7%) 7 (29.2%) 15 (25.0%) 8 (13.3%) 37 (61.7%) 27 (36.5%) 9 (12.2%) 36 (51.4%) Parent birthplace, n (%) U.S. born Foreign born 10 (40.0%) 15 (60.0%) 29 (48.3%) 31 (51.7%) 36 (48.6%) 38 (51.4%) Socioeconomic status, n (%) Low Middle/High 16 (64.0%) 9 (36.0%) 26 (43.3%) 34 (56.7%) 33 (44.0%) 42 (56.0%) YACCS age at survey, M (SD) 20.5 (2.3) 20.1 (2.9) 20.5 (3.0) YACCS age at survey, n (%) <21 years >21 years 17 (68.0%) 8 (32.0%) 40 (66.7%) 20 (33.3%) 47 (62.7%) 28 (37.3%) YACCS sex, n (%) Male Female 14 (56.0%) 11 (44.0%) 27 (45.0%) 33 (55.0%) 38 (50.7%) 37 (49.3%) YACCS residence, n (%) Living with parents Not living with parents 22 (88.0%) 3 (12.0%) 48 (80.0%) 12 (20.0%) 57 (77.0%) 17 (23.0%) Time since diagnosis, M (SD) 6.6 (2.1) 7.6 (1.8) 7.6 (2.3) 39 Treatment intensity, n (%) 1 2 3 4 1 (4.0%) 10 (40.0%) 13 (52.0%) 1 (4.0%) 5 (8.5%) 21 (35.6%) 25 (42.4%) 8 (13.6%) 10 (13.3%) 21 (28.0%) 38 (50.7%) 6 (8.0%) Hospital site, n (%) CHLA Miller 20 (80.0%) 5 (20.0%) 52 (86.7%) 8 (13.3%) 63 (84.0%) 12 (16.0%) Health insurance, n (%) Yes No 17 (68.0%) 8 (32.0%) 43 (74.1%) 15 (25.9%) 53 (71.6%) 21 (28.4%) 40 Table 4. Univariate associations and multivariable models between sociodemographic and clinical factors and triadic communication (n=160) Covariates Outcome: Triadic communication classes a High healthcare-focused communication High comprehensive communication Univariate Analyses (n=60) Multivariable Model b (n=56) c Univariate Analyses (n=25) Multivariable Model b (n=25) OR [95% CI] P d AOR [95% CI] P d OR [95% CI] P d AOR [95% CI] P d YACCS 21 years (ref=<21 years) 0.84 [0.41, 1.71] 0.63 0.90 [0.41, 1.99] 0.80 0.79 [0.30, 2.07] 0.63 1.06 [0.37, 3.06] 0.91 YACCS sex (ref= male) 1.26 [0.64, 2.48] 0.51 1.35 [0.65, 2.78] 0.42 0.81 [0.33, 2.01] 0.64 0.92 [0.35, 2.42] 0.86 YACCS health insurance (ref=no) 1.14 [0.52, 2.47] 0.75 1.07 [0.45, 2.53] 0.87 0.84 [0.32, 2.25] 0.73 1.07 [0.37, 3.12] 0.90 Treatment intensity e 1.13 [0.74, 1.74] 0.58 1.37 [0.85, 2.19] 0.20 1.04 [0.59, 1.84] 0.89 0.99 [0.54, 1.85] 0.99 Time since diagnosis e 0.99 [0.84, 1.17] 0.91 1.01 [0.84, 1.20] 0.93 0.80 [0.64, 1.00] 0.05 0.81 [0.64, 1.03] 0.08 Spanish speaking Hispanic parent (ref=no) 0.80 [0.35, 1.83] 0.59 0.85 [0.34, 2.09] 0.71 2.92 [0.94, 9.02] 0.06 2.92 [0.89, 9.53] 0.08 English-speaking Hispanic parent (ref=no) 1.25 [0.55, 2.84] 0.59 1.50 [0.64, 3.52] 0.36 2.59 [0.78, 8.62] 0.12 2.57 [0.76, 8.74] 0.13 English-speaking non-Hispanic parent (ref=no) Ref Ref Ref Ref Ref Ref Ref Ref Abbreviations. OR: Odds Ratio; AOR: Adjusted Odds Ratio; CI: Confidence Interval. YACCS: Young Adult Childhood Cancer Survivor. Notes: a Reference group is Overall Low communication. b In the multivariable models, all variables are included and mutually adjusted for. c Analytical sample size varies based on missing responses for covariates of multivariable regression models. Overall Low communication (n = 74). d P values are two-sided. e Continuous variables. 41 Table 5. Univariate associations and multivariable models between communication class and YACCS follow-up care at Survey 1 (n=160) and Survey 2 (n=94) Abbreviations. OR: Odds Ratio; AOR: Adjusted Odds Ratio; CI: Confidence Interval. YACCS: Young Adult Childhood Cancer Survivor. Notes: a In the multivariable models, all variables are included and mutually adjusted for. b Analytical sample size varies based on missing responses for covariates of multivariable regression models. c P values are two-sided. d Reference group is Overall Low communication. e Examined as a dichotomized variable where any high communication consisted of participants in high healthcare-focused and high comprehensive communication vs those in the low communication. f Continuous variables. Follow-up Care Survey 1 Follow-up Care Survey 2 Univariate Analyses Multivariable Model a (n=155) b Univariate Analyses Multivariable Model a (n=92) b Communication variable d OR [95% CI] P c AOR [95% CI] P c OR [95% CI] P c AOR [95% CI] P c Any high communication e 2.04 [0.97, 4.28] 0.06 2.04 [0.86, 4.85] 0.10 0.54 [0.23, 1.25] 0.15 0.57 [0.22, 1.43] 0.23 Covariates YACCS 21 years (ref=<21 years) 0.33[0.16, 0.70] 0.003 0.32 [0.13, 0.79] 0.01 0.86 [0.38, 1.98] 0.73 0.51 [0.18, 1.44] 0.20 Treatment intensity f 1.90 [1.18, 3.04] 0.008 1.89 [1.07, 3.31] 0.03 1.27 [0.73, 2.23] 0.40 1.09 [0.57, 2.12] 0.79 Time since diagnosis f 0.90 [0.75, 1.07] 0.21 0.97 [0.78, 1.19] 0.74 1.05 [0.86, 1.28] 0.61 1.07 [0.85, 1.34] 0.59 Sex (ref= male) 0.77 [0.37 1.60] 0.48 1.38 [0.57, 3.35] 0.47 2.95 [1.26, 6.92] 0.01 4.26 [1.60, 11.40] 0.003 Health insurance (ref=no) 4.29 [1.95, 9.44] 0.0003 4.20 [1.65, 10.67] 0.002 1.16 [0.49, 2.85] 0.75 1.95 [0.67, 5.63] 0.22 Spanish speaking Hispanic parent 0.59 [0.24, 1.42] 0.24 0.85 [0.29, 2.47] 0.77 1.65 [0.61, 4.51] 0.33 2.76 [0.82, 9.22] 0.10 English speaking Hispanic parent 0.62 [0.25, 1.52] 0.29 0.57 [0.20, 1.64] 0.29 0.85 [0.31, 2.30] 0.75 0.82 [0.27, 2.53] 0.74 English speaking non- Hispanic parent Ref Ref Ref Ref Ref Ref Ref Ref 42 Supplemental Table 1. LCA Binary Indicators Responded by: Question Response Parent Have you or your child ever been given a written summary of his/her cancer treatment? 0=No/not sure, 1=Yes Parent Have any of your child’s doctor discussed the health care need that your child will need in the future? 0=No/not sure, 1=Yes Parent Have you and your and child discussed the health care your child will need in the future? 0=No/not sure, 1=Yes Parent How often do you and your child talk about his/her cancer experience? 0=never/occasionally, 1=often Parent How often do you and your child talk about his/her needs for cancer related follow-up care? 0=never/occasionally, 1=often Parent How often do you and your child talk about health insurance issues? 0=never/occasionally, 1=often Child Have you ever been given a written summary of your cancer treatment? 0=No/not sure, 1=Yes Child Have any of your doctors discussed the health care that you will need in the future? 0=No/not sure, 1=Yes Child Have you and at least one of your parents/guardians discussed the health care you will need in the future? 0=No/not sure, 1=Yes 43 Supplemental Table 2. Sensitivity Analyses of Multinomial Regression with Age continuous Outcome: Communication classes a High Healthcare Communication (n=60) High Comprehensive Communication (n=25) Covariates Univariate Multivariable Univariate Multivariable OR [95% CI] p- value OR [95% CI] p-value OR [95% CI] p- value OR [95% CI] p- value YACCS age b 0.96 [0.85, 1.08] 0.46 0.97 [0.85, 1.11] 0.69 1.01 [0.86, 1.18] 0.94 1.08 [0.90, 1.30] 0.40 YACCS sex (ref= male) 1.26 [0.64, 2.48] 0.51 1.36 [0.66, 2.80] 0.41 0.81 [0.33, 2.01] 0.64 0.89 [0.34, 2.36] 0.82 YACCS health insurance (ref=no) 1.14 [0.52, 2.47] 0.75 1.08 [0.46, 2.53] 0.86 0.84 [0.32, 2.25] 0.73 1.08 [0.37, 3.15] 0.88 Treatment intensity b 1.13 [0.74, 1.74] 0.58 1.36 [0.85, 2.19] 0.20 1.04 [0.59, 1.84] 0.89 1.03 [0.56, 1.90] 0.93 Time since diagnosis b 0.99 [0.84, 1.17] 0.91 1.01 [0.85, 1.21] 0.89 0.80 [0.64, 1.00] 0.05 0.79 [0.62, 1.01] 0.05 Spanish speaking Hispanic parent (ref=no) 0.73 [0.34, 1.60] 0.43 0.84 [0.34, 2.08] 0.71 1.89 [0.75, 4.81] 0.18 2.98 [0.90, 9.82] 0.07 English-speaking Hispanic parent (ref=no) 1.36 [0.63, 2.92] 0.43 1.49 [0.63, 3.51] 0.36 1.49 [0.55, 4.02] 0.43 2.66 [0.78, 9.09] 0.12 English-speaking non- Hispanic parent (ref=no) Ref Ref Ref Ref Ref Ref Ref Ref a Reference group is Low communication (n = 75); b Continuous variables. 44 Supplemental Table 3. Sensitivity Analyses of Logistic Regression with Age continuous Follow-up Care T1 (n=155) Follow-up Care T2 (n=92) Univariate Multivariable Univariate Multivariable Communication variable a OR [95% CI] p-value OR [95% CI] p-value OR [95% CI] p-value OR [95% CI] p-value Any high communication b 2.04 [0.97, 4.28] 0.06 1.97 [0.85, 4.61] 0.12 0.54 [0.23, 1.25] 0.15 0.59 [0.23, 1.47] 0.26 Covariates YACCS age c 0.88 [0.77, 0.99] 0.04 0.87 [0.74, 1.02] 0.08 0.96 [0.83, 1.10] 0.54 0.90 [0.76, 1.06] 0.20 Treatment intensity c 1.90 [1.18, 3.04] 0.008 1.84 [1.07, 3.26] 0.03 1.27 [0.73, 2.23] 0.40 1.07 [0.55, 2.08] 0.84 Time since diagnosis c 0.90 [0.75, 1.07] 0.214 0.94 [0.77, 1.16] 0.59 1.05 [0.86, 1.28] 0.61 1.07 [0.85, 1.35] 0.58 Sex (ref= male) 0.77 [0.37, 1.60] 0.48 1.40 [0.58, 3.35] 0.46 2.95 [1.26, 6.92] 0.01 4.05 [1.54, 10.66] 0.004 Health insurance (ref=no) 4.29 [1.95, 9.44] <0.001 4.57 [1.82, 11.47] 0.001 1.16 [0.47, 2.85] 0.75 2.08 [0.72, 6.04] 0.18 Spanish speaking Hispanic parent 0.72 [0.33, 1.57] 0.41 0.86 [0.30, 2.49] 0.79 1.76 [0.70, 4.46] 0.23 2.54 [0.77, 8.40] 0.13 English speaking Hispanic parent 0.78 [0.35, 1.72] 0.54 0.61 [0.22, 1.71] 0.34 0.70 [0.28, 1.75] 0.44 0.79 [0.25, 2.44] 0.68 English speaking non- Hispanic parent Ref Ref Ref Ref Ref Ref Ref Ref a Reference group is Overall Low communication (n = 75); b Examined as a dichotomized variable where any high communication consisted of participants in high healthcare- focused and high comprehensive communication vs those in the low communication; c Continuous variables 45 Supplemental Table 4. Differences between study responders and non-responder at Time 2 Characteristics Total Sample N=160 Responder Time 2 (N=94) Non-Responder Time 2 (N=66) P-value Parent’s age 48.76 (6.71) 49.36 (6.59) 47.92 (6.84) 0.19 Parent’s sex Female Male 141 (88.7%) 18 (11.3%) 84 (90.3%) 9 (9.7%) 57 (86.4%) 9 (13.6%) 0.44 Parent’s ethnicity Hispanic Non-Hispanic 91 (56.9%) 69 (43.1%) 53 (56.4%) 41 (43.6%) 38 (57.6%) 28 (42.4%) 0.88 Parent’s ethnicity/language Hispanic Spanish speaking Hispanics English speaking Non-Hispanic English speaking 47 (29.4%) 44 (27.5%) 69 (43.1%) 28 (29.8%) 25 (26.6%) 41 (43.6%) 19 (28.8%) 19 (28.8%) 28 (42.4%) 0.95 YACCS age at survey, M (SD) 20.34 (2.85) 20.63 (2.94) 19.92 (2.67) 0.12 YACCS age <21 years > 21 years 104 (65.0%) 56 (35.0%) 55 (58.5%) 39 (41.5%) 49 (74.2%) 17 (25.8%) 0.04 YACCS sex Male Female 79 (49.4%) 81 (51.6%) 41 (43.6%) 53 (56.4%) 38 (57.6%) 28 (42.4%) 0.08 Time since diagnosis 7.43 (2.12) 7.40 (2.11) 7.48 (2.14) 0.80 Treatment intensity 1 2 3 4 16 (10.1%) 53 (32.7%) 76 (47.8%) 15 (9.4%) 7 (7.4%) 34 (36.2%) 46 (48.9%) 7 (7.5%) 9 (13.8%) 18 (27.7%) 30 (46.2%) 8 (12.3%) 0.33 Health insurance Yes No 113 (72.0%) 44 (28.0%) 66 (71.0%) 27 (29.0%) 47 (73.4%) 17 (26.6%) 0.73 46 Supplemental Table 5. Sensitivity Analyses – Full Model estimating association between class and follow-up care at Time 1 in restricted sample (n=94) Follow-up Care T1 (n=92) Univariate Multivariable Communication variable a OR [95% CI] p-value OR [95% CI] p-value Any high communication b 2.39 [0.91, 6.53] 0.08 2.07 [0.71, 6.02] 0.18 Covariates YACCS 21 years (ref=<21 years) 0.27 [0.10, 0.73] <0.001 0.27 [0.08, 0.89] 0.03 Treatment intensity c 0.90 [0.47, 1.70] 0.74 0.91 [0.42, 1.98] 0.82 Time since diagnosis c 0.85 [0.68, 1.08] 0.18 0.94 [0.72, 1.23] 0.63 Sex (ref= male) 0.99 [0.38, 2.56] 0.99 1.80 [0.57, 5.66] 0.32 Health insurance (ref=no) 3.44 [1.26, 9.38] 0.02 3.60 [1.09, 11.94] 0.04 Spanish speaking Hispanic parent 0.74 [0.27, 2.00] 0.55 1.25 [0.32, 4.88] 0.75 English speaking Hispanic parent 1.04 [0.36, 3.01] 0.95 0.76 [0.19, 3.01] 0.69 English speaking non-Hispanic parent Ref Ref Ref Ref a Reference group is Overall Low communication (n = 75); b Examined as a dichotomized variable where any high communication consisted of participants in high healthcare-focused and high comprehensive communication vs those in the low communication; c Continuous variables 47 CHAPTER 3: STUDY 2 - HISPANIC/LATINOS AND NON-HISPANIC WHITES’ CHILDHOOD CANCER SURVIVORS AND PARENTS - A DYADIC ANALYSIS OF APPRAISAL FACTORS AND MENTAL HEALTH ABSTRACT Background: While limited, dyadic research demonstrates the interdependent relationship between the health and adjustment after treatment between childhood cancer survivors (CCS) and their parents. We examined interrelationships between perceived social support, religiosity, and spirituality with depressive symptomology and perceived stress among Hispanic/Latino in CCS-parent dyads. Methods: 160 child-parent dyads from the Project Forward pilot study completed validated questions assessing social support, religiosity, spirituality, depressive symptoms, and perceived stress. Independent bivariate associations were identified using Pearson correlation coefficients. Bidirectional associations between the variables of interest were identified with path analysis controlling for variance explained by their partner utilizing the Actor-Partner Interdependence Model (APIM). Lastly, we used a multigroup approach to test for the moderating effects of Hispanic ethnicity on these relationships. Results: Mean age of CCS was 20 years old, 51% female, 30% diagnosed with leukemia, and on average 7 years from diagnosis. The mean age of parents was 49 years old and 89% were mothers. There were medium (r= -0.33) to large (r = 0.78) correlations between CCS and parent- reported social support, religiosity, spirituality, depressive symptoms, and perceived stress. For both CCS and parents, perceived social support was negatively associated with their depressive symptoms and perceived stress (i.e., actor effect). Parents' social support was not significantly 48 associated with CCS's depressive symptoms and stress. However, higher perceived social support by the CCS improved parents’ depressive symptoms (β= –0.202, p<0.01) and perceived stress (β= –0.164, p<0.05). We also found additional actor effects in these relationships when we explored moderating effects of Hispanic ethnicity. Conclusion: Our study findings confirm the importance of social support on psychological distress. Partner effects of social support among CCS-parent dyads may influence psychological distress. These findings emphasize the importance of interventions that address continued psychosocial follow-up for childhood cancer survivors and parents. 49 INTRODUCTION It has been projected that there would be more than 500,000 survivors of childhood cancer living in the United States by 2020, of whom their parents are the primary caregivers throughout their cancer journey. 12 There is substantial evidence that during the time of diagnosis and active treatment, childhood cancer survivors (CCS) and parents experience a wide range of psychological distress symptoms, such as depression, anxiety, posttraumatic stress and posttraumatic disorder, somatic symptoms and stress, in part because of the complex stressors of dealing with cancer. 31-34,59,66-68 Although the majority of studies indicate that CCS’s are at increased risk for long-term late effects of treatment, less empirical studies examine the adverse impact on health-related of quality of life (HRQoL) for both CCS and parents long-term. Some research indicates that both CCS and parents continue to experience significant psychological distress years after completing treatment, known as the survivorship phase; however, findings are less consistent about the magnitude of the problem. Anxiety and depressive symptoms are present in 4.8% to 28% and 9.1% to 41% of survivors, respectively, and CCS are at increased risk of experiencing somatic distress symptoms (e.g., excessive thoughts, feelings, and behaviors related to physical symptoms). 26,148-150 Brinkman et al. explored patterns of psychological distress in the longitudinal multi-site Childhood Cancer Survivor Study (CCSS) cohort. 148 They found subgroups of survivors with persistent symptoms during long-term survivorship and latent symptoms that emerged 13 years later. Similarly, parents of childhood cancer survivors also are at risk for experiencing psychological effects such as posttraumatic stress symptomology (PTSS) and posttraumatic stress disorder (PTSD), 33,59,66 emotional distress, 66,67 depressive symptoms and anxiety. 59,66,68 There is relatively less research examining perceived stress in long-term survivors of childhood 50 cancer and parents, a subjective assessment of psychological distress that does not refer to specific events or stressors but rather the lack of control and unpredictability. 151 Perceived stress is equally important to consider throughout the cancer experience as it is frequently accompanied by psychological distress (e.g., anxiety, depression, and posttraumatic stress symptoms). 152,153 And, thus, may indicate the need to develop coping skills or participate in stress management intervention. There is evidence that non-white minority parents experience greater psychological distress and impaired quality of life than non-Hispanic white parents. 71,75,154 Poor mental health status among Hispanic/Latino parents of CCS has been linked to psychosocial factors such as their perceptions of stress, greater family impact, unresolved anger/sorrow, and long-term uncertainty of cancer recurrence in CCS. 71,155 Child outcomes also play a significant role in worse parental psychological outcomes. It has also been found that mental health outcomes of Hispanic/Latino parents are associated with their perception of CCS depressive symptoms, the presence of speech/language problems among CCS, and CCS executive and psychosocial functioning. 71,155 Dyadic literature Two recent meta-analyses demonstrate that greater parental distress is related to CCS distress and quality of life; however, most of these studies were conducted during diagnosis or shortly after treatment completion and with primarily non-Hispanic white CCS-parent dyads. 156,157 Extant dyadic literature between adult survivors and spousal caregivers suggests positive reciprocal relationships for psychosocial adjustment beyond mental health' spillover effects'. 98,153 For instance, higher levels of the spiritual well-being of adult survivors or caregivers are associated with better mental and physical health for both. 153 However, literature 51 is sparse in assessing bidirectional associations between young adult survivors of childhood cancer (YACCS) and parents. The findings of the limited studies that account for the interdependence relationship of YACCS-parent dyads demonstrate that parents’ depressive symptoms negatively affect AYA's family cohesion report. 95 While greater AYA patients' subjective illness severity is associated with greater caregivers PTSS. 97 These findings suggest that CCS and parents’ well-being are interrelated and that dyadic effects within this population should be further explored. These reciprocal relationships may be particularly salient to explore among positive psychosocial adjustments, specifically between coping resources and mental health outcomes. Social support, spirituality, and religiosity are coping resources that may enhance mental well- being for both CCS and parents throughout the cancer trajectory. 29,47,58,59,82,83 However, no research to date has examined if there are bidirectional relationships for how these coping resources may impact the psychological distress in CCS-parent dyads. This is important because it provides insight into whether coping resources alleviate dyadic psychological distress. Further, Hispanic/Latino CCS-parent dyads experience a greater degree of psychological distress; 30,71,155 yet are an understudied population with unique cultural values and beliefs that could contribute to their psychosocial adjustment (e.g., perceived social support and their experiences with spirituality and religiosity). 120 This study attempts to fill gaps in the dyadic context and expand the literature by exploring if Hispanic ethnicity plays a role in this relationship. The Actor-Partner Independence Model (APIM) Framework APIM is an analytical technique used for non-independent data, in which individuals are embedded within a dyad, and therefore, outcomes of interest are correlated with each other. 158-160 APIM posits that both an individual and their dyadic partner can simultaneously affect the 52 outcome of interest. Informed by this framework and previous dyadic literature, we addressed three study aims. First, we examined the reciprocal effects of perceived social support, religiosity, and spirituality on depressive symptomology among parent-child dyads. We hypothesized that parents' greater perceived social support, religiosity, and spirituality would be significantly related to less depressive symptomology in their child and vice versa (i.e., “partner effects”) after controlling for CCS treatment intensity, age at survey and parent Hispanic ethnicity as covariates. Second, we examined the reciprocal effects of perceived social support, religiosity, and spirituality on perceived stress among parent-child dyads. We hypothesized that parents' greater perceived social support, religiosity, and spirituality would be significantly related to less perceived stress in their child and vice versa (i.e., “partner effects”) after controlling for covariates. For both aims one and two, we hypothesized that greater perceived social support, religiosity, and spirituality of parents would be significantly related to less depressive symptomology and perceived stress in parents and CCS (i.e., “actor effects”) after controlling for covariates. Lastly, we examine a nondirectional exploratory aim of whether Hispanic ethnicity has moderating effects in the association between perceived social support, religiosity, and spirituality on depressive symptomology and perceived stress on dyads. METHODS Participants Participants were from the Project Forward pilot study, a cross-sectional study that used population-based survey methods to evaluate follow-up care among adolescent and young adult 53 childhood cancer survivors (CCS) and their parents. A total of 160 parent-child dyad respondents were included in the present study and data was collected 2009-2010. 52 CCS diagnosed at age <18 years and were treated at either of two children hospitals: Children’s Hospital Los Angeles or Miller Children’s Hospital in Long Beach were selected from the SEER cancer registry for Los Angeles County. Survivors met the inclusion criteria if they had: (1) a diagnosis of any cancer except for Hodgkin Lymphoma (these survivors were participating in a different study); (2) were between the ages of 15 to 25 years in 2009; and (4) were able to read and write in English and/or Spanish to complete the survey. Procedures The standard recruitment procedure for CCS and parents included two methods (detailed recruitment information published elsewhere). 161 If CCS were <18 years at the time of the survey, an initial packet was mailed to both the parent and survivor, inviting them to participate in the study. If CCS were adults, the invitation packet was mailed directly to them, then they were asked for parental contact information and permission to mail survey materials to their parents. Consent was obtained from both CCS and parents to participate in the study. Upon completing the survey, both (survivors and their parents) received a $20 gift card for participating. All study procedures were approved by the California Committee for the Protection of Human Subjects, California Cancer Registry, and by human subjects committees at the University of Southern California, Children’s Hospital of Los Angeles, and Miller Children’s Hospital. Measures 54 A standard dyadic design was used for this study. Only one parent and CCS participated in the study, and both members were measured on the same independent and dependent variables. Independent variables (selected based on theoretical and existing literature) Social support – Single-Item Measure of Social Support (SIMSS), a validated predictor of morbidity strongly associated with the composite social support index, was used. 162 It asked participants, “how many people do you have that you can count on for help when you need them, such as, to give rides to the hospital or store, or to help if you are sick?”. Response options range from 0= none, 1= 1-2, 2= 3 or more, with higher scores indicating greater social support. Religiosity/Spirituality – Two questions were asked about aspects of religiosity and spirituality. The first question assessed religiosity by asking the “frequency of religious service attendance” and response options range from 0= never, 1= every few years, 2= several times a year, 3= 2-3 times per month, or 4= at least once per week, with higher scores indicating a greater frequency of religious service attendance. The second question assessed spirituality by asking participants about the “importance of religion or spirituality,” and response options ranged from 0= not important, 1= somewhat important, or 2= very important, with higher scores indicating greater importance of religion or spirituality. Dependent variables Depressive symptoms – The 20-item Center for Epidemiological Studies Depression Scale (CES-D) is a well-established and widely used measure to assess current depressive symptoms. 163 Participants are asked to report the frequency of depressive symptoms that occurred during the past week using a four-point Likert scale ranging from (0) none of the time to (3) all of the time. Internal consistency for this measure is high for both childhood cancer 55 survivors and parents in previous studies. The present analysis used the total sum score, with higher scores indicating greater depressive symptoms. Cronbach’s alpha in this dyad sample was 0.84 for parents and 0.92 for CCS. Perceived Stress Scale – Stress was assessed using the 4-item version of the Perceived Stress Scale (PSS), which is one of the most popular tools to measure the degree of perceived stress during the last month. 151 Participants were asked the extent to which they felt or thought each statement in the past month, with responses ranging from 0 = never to 4 = very often. Items were summed to create a total perceived stress score, with higher scores indicating more stress. Cronbach’s alpha in this dyad sample was 0.71 for parents and 0.54 for CCS. Covariates Demographic and clinical information was obtained from self-report and cancer registry data. CCS's current age at the survey was used as a continuous variable. Treatment intensity was calculated using the Intensity of Treatment Rating Scale 2.0 (ITR-2); 128 a 4-level validated scale ranging from 1=least intensive treatment (surgery only) to 4=most intensive, from cancer registry data and medical chart review. Parent Hispanic ethnicity was self-reported in the survey. Age at survey, treatment intensity, and parent Hispanic ethnicity were the three selected covariates based on the literature that previously found an association between these variables and quality of life outcomes. 30,71 Statistical analysis SAS version 9.4 was used for data cleaning and to create a subset dataset where only the variables of interest for this study were included. 131 First, we conducted descriptive statistics to compare demographic characteristics between CCS and parents using t-tests for continuous variables and chi-square for categorical variables. We also reviewed each variable for 56 missingness and found that the proportion of missing data for the independent and dependent variables ranged from 0-6%. Then we evaluated non-independence by using the Pearson correlation coefficient to estimate the relationship between the dyadic member’s scores on the predictor (social support, religiosity, and spirituality), covariates (age of CCS, treatment intensity, and parent Hispanic ethnicity), and dependent outcomes (depressive symptoms and perceived stress). We used Cohen’s criterion where 0.5 is a large correlation, 0.3 is a medium correlation, and 0.1 is a small correlation. 164 Next, we conducted a series of path analyses of Actor-Partner Interdependence Model (APIM) based on the Structural Equation Modeling (SEM) framework in Mplus version 8. 132 This technique was used to examine the reciprocity of parent-CCS dyadic relationships between depressive symptoms, perceived stress, social support, religiosity, and spirituality. APIM accounts for the non-independence of dyad data, resulting in more accurate findings. In contrast, other traditional regression models methods can result in biased significance tests such as type I and II errors. 165 SEM uses the Full Information Maximum Likelihood (FIML) estimation method, which includes all dyad data in the analyses as long as one individual responds to the respective outcome. The FIML approach treats missing data as missing at random (MAR), which was supported based on a comparison of descriptive characteristics of dyads in the total sample (n=160) with dyads based on the one independent variables (parent frequency of religious service attendance) that had greater than 5% missing data. Additionally, using the Kenny and Ackerman online calculator, a power analysis with distinguishable dyads using an alpha of 0.05 and a sample of 160 dyads was conducted. 166 The estimated power to detect actor effect was 0.882 and the partner effect was 0.471, which is in line with the recommended power to test for consequential non-independence of 0.80 for actor effect and 0.45 for partner effect. 165 57 Dyads are considered to be distinguishable when there is a meaningful characteristic that can be used to differentiate the members within a dyad. 165 Due to theoretical consideration, APIM for distinguishable dyads was used to implement all models, which means path analysis results would give us two equations—one for each person within the dyads (e.g., parents and CCS). Two separate actor-partner models were conducted based on our two dependent variables (depressive symptoms and perceived stress) and all three independent variables (social support, religiosity, and spirituality) were entered into each model. Thus, one model for each outcome with multiple equations was estimated and tested simultaneously. Figures 4 and 5 illustrate the specification of our two models. The path diagram was created to illustrate multiple causal relationships between our variables of interest, the identification of correlations, and the measurement variance of our two outcomes of interest. Several models were estimated. First, we examined our two models without controlling for covariates and found that our model fit was poor. In these models, both actor and partner effects are examined simultaneously while controlling for variance explained by the partner. Second, we tested whether adding covariates to these two models demonstrated a better model fit. These models controlled for CCS age, treatment intensity, and parent Hispanic ethnicity, which revealed that the model fit did not improve; however, our results remained consistent. Next, we used the model modification indices results from our models with covariates and added four additional pathways to improve our model fit, which became our final model. These correlation pathways were CCS treatment intensity with parent importance of religion/ spirituality, CCS treatment intensity with parent religious service attendance, parent Hispanic ethnicity with parent religious service attendance, and parent Hispanic ethnicity with parent social support. Finally, the moderating effects of Hispanic ethnicity were tested using the 58 multigroup approach, allowing parameter estimates to vary among Hispanics or non-Hispanic dyads. Essentially, we conducted a separate structural model for each group and assessed if the parameter estimates were statistically different. The overall model fit was assessed using chi‐square statistic, a root mean square error of approximation (RMSEA), the standardized root mean residual (SRMR), Tucker‐Lewis index (TLI), and comparative fit index (CFI). 167 Adequate fit for a specified model to the data requires a non-significant chi‐square statistic, RMSEA of less than or equal to 0.06, SRMR value of less than 0.08, TLI greater than 0.90, and CFI greater than 0.95. RESULTS Sample Characteristics Selected demographic characteristics of dyads are shown in Table 6. Childhood cancer survivors age ranged from 16 to 26 at the time of the survey (M=20.29, SD=2.80) and parents’ age ranged from 34 to 69 at the time of the survey (M=48.70, SD=6.71). About half of CCS were female (51%) and half identified as Hispanic (55%). On average, CCS were diagnosed eight years ago (SD=1.99), and one-third of CCS were diagnosed with leukemia (30%). Parents had a mean age of 48.70 (SD=6.71), were primarily mothers (89%), and most identified as Hispanic (57%). Most dyads had completed more than high school education (CCS: 43% and parents: 52%) and the majority of all dyads were in the middle to high socioeconomic status category (53%). Also, demographic information for dyads is presented by Hispanic ethnicity in Supplemental Table 6. Summary statistics of the study variables, including means, standard deviations and Pearson correlation analyses, are provided in Table 7. We found that parents reported greater beliefs that religion or spirituality was very important (p<0.001) and more frequently attended 59 religious services (p<0.001) than YACCS. However, YACCS reported having more perceived social support than parents (p=0.0006). Despite these differences, we saw similar scores of depressive symptoms and perceived stress between parents and YACCS. Bivariate analyses demonstrated significant medium to large correlations between CCS and parent reported study variables. These correlations were both positive (r = 0.18 to 0.78) and negative (r = – 0.16 to – 0.33). Actor and partner effect models We first modeled the effect of social support, importance of religiosity/spirituality, and frequency of religious service attendance on self-reported depressive symptoms in the parent- child dyad using APIM (see Figure 6). This model provided an excellent fit to the sample data, CFI= 1.000, TLI= 1.109, RMSEA= 0.000 (90% CI= 0.000, 0.076), and SRMR= 0.023. We found that there was a significant actor effect observed such that CCS perceived social support from others was negatively associated with their depressive symptoms (β= –0.280, p<0.001) after controlling for confounding effects of all other variables including parent (especially their partner's effects: parents' perceived social support). Additionally, parents perceived social support from others was negatively associated with their depressive symptoms (β= –0.192, p<0.01). In other words, we found that the CCS and parents who reported higher social support scores showed lower depressive symptoms. We also found a significant partner effect such that CCS perceived social support from others was negatively associated with their parents' depressive symptoms (β= –0.202, p<0.01). The corresponding partner effect from parent to YACCS was not statistically significant when we simultaneously adjusted for actor effects. Furthermore, we found no significant actor or partner effect from the importance of religion and 60 spirituality and frequency of religious service attendance with depressive symptoms for both CCS and parents. The second model was identical to the first, except that perceived stress was the outcome of interest (see Figure 7). This model also provided an excellent fit to the sample data, CFI= 1.000, TLI= 1.279, RMSEA= 0.000 (90% CI= 0.000, 0.076); SRMR= 0.024. Similarly, we found two actor effects such that CCS perceived social support from others was negatively associated with their own perceived stress (β= –0.220, p<0.01) and that parents perceived social support from others was negatively associated with their own perceived stress (β= –0.177, p<0.05). Additionally, we found one partner effect where CCS perceived social support from others was negatively associated with their parents perceived stress (β= –0.164, p<0.05). Once again, for both CCS and parents, no significant actor or partner effect was detected from the importance of religion and spirituality and frequency of religious service attendance with perceived stress. Moderation effects of Hispanic ethnicity Lastly, we examined the moderating effects of parent Hispanic ethnic on these two models (see Figure 8 and 9). For the model related to depressive symptoms, we found that among non-Hispanic dyads, the same actor and partner effect was found such that CCS perceived social support from others was negatively associated with their depressive symptoms (β= –0.411, p<0.001) and their parents' depressive symptoms (β= –0.305, p<0.01) (see Figure 8). However, we also found other significant actor effects. Parents perceived importance of religion and spirituality was positively associated (β= 0.367, p<0.05) and frequency of religious service attendance were negatively associated (β= –0.498, p<0.05) with their depressive symptoms. While for Hispanic dyads, we only found a significant partner effect that CCS perceived social 61 support from others was negatively associated with their parents' depressive symptoms (β= – 0.206, p<0.05). For the model related to perceived stress, we only found one significant actor effect finding, which was among Hispanic dyads, CCS perceived social support from others was negatively associated with their own perceived stress (β= –0.242, p<0.05) (see Figure 9). DISCUSSION This study addressed a gap in the dyadic research literature relating to coping resources and mental health outcomes among ethnically diverse childhood cancer survivors (CCS) and parent relationships. Our results were consistent with existing research as individual effects were identified, revealing social support was negatively associated with depressive symptoms and perceived stress. We also found significant CCS partner effects that CCS social support was negatively associated with parent depressive symptoms and perceived stress. Much less is known about the dyadic relationships of Hispanic/Latino and long-term survivors, so our results provide insight into this understudied population. We found that greater CCS and parent perception of social support received was associated with lower depressive symptoms and perceived stress levels. These results support our hypotheses and are consistent with a large body of literature that shows that social support is associated with parent and CCS mental health outcomes. 47,58,59 It has been previously demonstrated that higher emotional and instrumental family support is related to better psychological adjustment for CCS and parents. 58 Our findings add to the existing literature by controlling for the interdependence effects of dyads. Additionally, we found that CCS perceived social support was a significant negative predictor for parents’ depressive symptoms and perceived stress, but not vice versa. Our results demonstrated that for parents' mental health, CCS perceived social support significantly affected 62 their mental health. These findings align with previous studies focused on understanding the psychosocial and health outcomes of older adults cancer survivors and caregivers, which have found significant partner effects. 168 Specifically, higher levels of social support of lung cancer survivors or caregivers was associated with their partners' self-reported health. 169 In contrast, other studies have found significant partner effects from spouses' social support with only cancer survivors' mental health. 170,171 One possible explanation for this finding is the inherent interdependent relationship between YACCS and parents. Given that YACCS were between the ages of 16-26, parents may be more susceptible to their child's overall well-being, including that they perceive higher levels of social support. Further, while CCS and parent experience psychological distress, parents often act as the primary supporter of CCS, with this in mind, if CCS have more social support, then this might indicate less caregiver burden, ultimately explaining lower depressive symptoms. The primarily null finding of parent social support on CCS mental health might be explained by parents' lower levels of reported social support. CCS reported significantly higher levels of social support than parents. Therefore, it could also indicate that there may be mediation effects of social support and psychological distress that should be explored in the future. Contrary to our hypotheses, we did not find any actor or partner effects in the relationship between religiosity (e.g., frequency of religious service attendance) and spirituality (e.g., the importance of religion or spirituality) to depressive symptoms or perceived stress. It is possible that our measures were not encompassing the elements within religiosity and spirituality that have been previously found to be associated with psychological distress. For example, Kim et al. found that the dyad’s overall level of spiritual well-being was not associated with their partners' mental health. 172 Rather, the more the person found peace, the more likely they were to report 63 better mental health (e.g., actor effects). Similarly, another study found that higher levels of meaning/peace of metastatic lung cancer patients and their spousal caregivers were associated with their depressive symptoms and cancer distress but found no partner effects. 173 Only one study found a partner effect; higher levels of spirituality in spouses, which encompasses the importance of spirituality in an individual’s life and their engagement in spiritual activities, was associated with lower levels of intrusive thoughts (a subscale of emotional distress) in breast cancer survivors. 174 Future studies should measure spirituality and religiosity with validated scales with multiple subscales as they may explain the lack of individual and dyadic effects. The present study found similarities and differences by Hispanic ethnicity for these relationships. Specifically, Hispanic CCS perceived social support was negatively associated with their depressive symptoms. While for non-Hispanic CCS, perceived social support was negatively associated with their perceived stress. Additionally, for both Hispanic and non- Hispanic CCS, perceived social support from others was associated with their parents' depressive symptoms. These findings build evidence that beyond individual factors, dyadic coping resources such as social support are related to mental health outcomes of CSS-parent dyad post- treatment. We also found that among non-Hispanic dyads, there were two additional actor effects for parents: parent frequency of religious service attendance was associated with lower levels of depressive symptoms, yet parent's perception of the importance of religion and spirituality was associated with higher depressive symptoms. Although these results were unexpected, there are some possible explanations. In particular, one study found that the spiritual needs of family caregivers predicted their mental health. 175 It may be that despite parents' perception about the importance of their religious and spiritual needs, their spiritual needs are not being met. Our 64 finding of non-Hispanic dyads parents' frequency of religious service attendance on depressive symptoms may be explained by higher levels of meaning/peace and faith, which have been previously documented. 172,173 Strengths and Limitations Our study has multiple strengths. Our sample draws from a unique and diverse community in which more than half of the dyads were Hispanics. CCS included in this study had been treated for multiple cancer types representative of the most common childhood cancers in the United States. Additionally, methodological strengths include considering the interdependence nature of parent-child relationships using an APIM modeling approach. Lastly, CCS in this study were largely long-term survivors. Although the current study will contribute to the growing literature of dyadic experiences, especially among the vulnerable population, this study still has limitations regarding the methodology, sampling, and measurements. The first limitation is that all psychosocial variables were self-reported. In particular, social support, religiosity, and spirituality measures used in this analysis were single-item measures, albeit all single-item measures have previously been shown to be both internally and externally valid. Second, dyad members were recruited from two children’s hospitals in Los Angeles County, which means findings may not necessarily be generalizable as there is great variability among different healthcare settings. Third, the cross-sectional design limited analysis and findings; a future longitudinal study examining these causal pathways may be illuminating. CONCLUSION Our study findings confirm the importance of cancer survivor and caregiver social support on psychological distress and suggest that there may be differences in these relationships according to Hispanic ethnicity. There may be potential differences in culture, family structure, and/or class, affecting how dyads perceive/adopt coping strategies. Our findings emphasize the 65 importance of continued psychosocial follow-up for both childhood cancer survivors and parents. This is especially important due to the COVID-19 pandemic, which has disrupted cancer care and may contribute to increased depression and stress for CCS and parents. Therefore, it would be important for future work to collect data that assess these relationships and assess other psychological distress measures such as anxiety or fear of COVID-19. Future research may benefit from evaluating whether interventions that focus on increasing social support post- treatment or identifying existing resources for dyads impact dyad's mental health. 66 Figure 4. Proposed conceptual models of dyadic influences of social support, religious attendance, and importance of religion/spirituality on depressive symptoms using SEM methods. 67 Figure 5. Proposed conceptual models of dyadic influences of social support, religious attendance, and importance of religion/spirituality on perceived stress using SEM methods. 68 Table 6. Demographic characteristic of CCS and parents (N=160 dyads) Childhood Cancer Survivor Parent of CCS Variables M SD N (%) M SD N % Age at diagnosis (years) 11.9 2.91 -- -- -- -- -- -- Range: 6-19 Age at survey (years) 20.29 2.80 -- -- 48.7 6.71 -- -- Range: 16-26 (child); 34-69 (parent) Gender -- -- -- -- Male 79 49% 18 11% Female 81 51% 141 89% Ethnicity -- -- -- -- Non-Hispanic -- -- 72 45% -- -- 69 43% Hispanic -- -- 88 55% -- -- 91 57% Cancer site -- -- -- -- -- -- Leukemia 48 30% Brain 27 17% Bone 10 6% Lymphoma 31 19% Other 44 28% Time since diagnosis (years) 8 1.99 -- -- -- -- -- -- Range: 5-11 years Treatment intensity -- -- -- -- -- -- 1 16 10% 2 52 33% 3 76 48% 4 15 9% Educational Level -- -- -- -- <12 years 61 38% 55 35% HS graduate/GED 29 18% 21 13% >12 years 69 43% 82 52% Socioeconomic status -- -- -- -- -- -- Low 75 47% Middle/High 85 53% 69 Table 7. Mean, standard deviation, and correlations of parent and childhood cancer survivors study variables and covariates 1 2 3 4 5 6 7 8 9 10 11 12 13 Mean 1.61 2.49 1.31 15.63 5.67 1.24 1.87 1.53 14.35 5.29 2.57 20.34 0.56 SD 0.62 1.38 0.71 12.71 3.54 0.73 1.42 0.5 11.65 3.16 0.80 2.85 0.50 Paired t-test a <0.001 <0.001 0.0006 0.3812 0.3089 -- -- -- -- -- -- -- -- 1. Parent Importance Religion/Spirituality 1.00 2. Parent Religious service attendance 0.60*** 1.00 3. Parent Social Support -0.16* 0.03 1.00 4. Parent Depressive symptoms 0.19* 0.08 -0.33*** 1.00 5. Parent Perceived stress 0.18* 0.07 -0.27*** 0.78*** 1.00 6. CCS Importance Religion/Spirituality 0.30*** 0.28*** -0.09 0.13† 0.05 1.00 7. CCS Religious service attendance 0.26*** 0.56*** 0.12 -0.01 -0.04 0.56*** 1.00 8. CCS Social Support -0.04 -0.03 0.31*** -0.30*** -0.22** -0.15† 0.02 1.00 9. CCS Depressive symptoms 0.11 0.10 -0.09 0.33*** 0.27*** 0.07 -0.03 - 0.29*** 1.00 10. CCS Perceived stress 0.05 0.08 -0.02 0.15† 0.15† 0.03 -0.03 - 0.22*** 0.73*** 1.00 11. CCS Treatment Intensity 0.21** -0.03 0.04 0.01 -0.03 0.06 0.002 0.001 0.07 0.06 1.00 12. CCS Age -0.04 -0.10 0.06 -0.04 -0.08 -0.02 -0.10 -0.05 0.03 0.02 -0.09 1.00 13. Hispanic Ethnicity 0.25** 0.27*** -0.19* 0.23** 0.09 0.17* 0.11 -0.14† 0.10 0.10 0.04 -0.08 1.00 Abbreviations. CCS: Childhood cancer survivors; SD: standard deviation Notes: Depressive symptom values are self-reported depressive symptom total scores on the Center for Epidemiological Studies Depression Scale; and Perceived stress values are self-reported total scores on Perceived Stress Scale for parents and childhood cancer survivors, respectively. ⁎⁎⁎ p<0.001; ⁎⁎ p<0.01; ⁎ p<0.05; † p<0.10 a Paired sample t-test between the same independent and dependent variables of parent and CCS (e.g., parent depressive symptoms and CCS depressive symptoms) 70 Figure 6. APIM model of social support, religious service attendance, and importance of religion/spirituality on CCS and Parent Depressive Symptomology Note. CCS: Childhood cancer survivors Figure values are standardized regression coefficients while controlling for CCS age, treatment intensity, and Hispanic ethnicity. Solid lines represent significant estimates and dashed lines represent statistical non-significant estimates. ***P < .001. **P < .01. *P < .05. †P <.10 Error covariance estimates have been omitted for ease of presentation. 71 Figure 7. APIM model of social support, religious service attendance, and importance of religion/spirituality on CCS and Parent Perceived Stress Note. CCS: Childhood cancer survivors Figure values are standardized regression coefficients while controlling for CCS age, treatment intensity, and Hispanic ethnicity. Solid lines represent significant estimates and dashed lines represent statistical non-significant estimates. ***P < .001. **P < .01. *P < .05. †P <.10 Error covariance estimates have been omitted for ease of presentation. 72 Figure 8. APIM model of social support, religious service attendance, and importance of religion/spirituality on CCS and Parent Depressive Symptomology among Hispanic and non-Hispanic dyads Note. CCS: Childhood cancer survivors Figure values are standardized regression coefficients while controlling for CCS age and treatment intensity; Solid lines represent significant estimates and dashed lines represent statistical non-significant estimates. ***P < .001. **P < .01. *P < .05. †P <.10 Error covariance estimates have been omitted for ease of presentation. 73 Figure 9. APIM model of social support, religious service attendance, and importance of religion/spirituality on CCS and Parent Perceived Stress among Hispanic and non-Hispanic dyads Note. CCS: Childhood cancer survivors Figure values are standardized regression coefficients while controlling for CCS age and treatment intensity; Solid lines represent significant estimates and dashed lines represent statistical non-significant estimates. ***P < .001. **P < .01. *P < .05. †P <.10 Error covariance estimates have been omitted for ease of presentation. 74 Supplemental Table 6. CCS and Parent demographic information by Hispanic ethnicity Hispanic Dyads (n=91) Non-Hispanic Dyads (n=69) Variables CCS Parent CCS Parent Age at survey (years) a 20.14 (2.66) 46.60 (6.00) 20.59 (3.08) 51.58 (6.57) Gender Male 46 51% 8 9% 33 48% 10 15% Female 45 49% 83 91% 36 52% 58 85% Cancer site -- -- -- -- Leukemia 30 33% 18 26% Brain 12 13% 15 22% Bone 7 8% 3 4% Lymphoma 17 19% 14 20% Other 25 27% 19 28% Time since diagnosis (years) a 7.33 (2.19) -- -- 7.57 (2.03) -- -- Treatment intensity -- -- -- -- 1 8 9% 8 12% 2 32 35% 20 29% 3 40 44% 36 53% 4 11 12% 4 6% Educational Level -- -- -- -- <12 years 37 41% 51 57% 24 35% 4 6% High school graduate/GED 22 24% 15 17% 7 10% 6 9% >12 years 31 34% 24 27% 38 55% 58 68% Socioeconomic status -- -- -- -- Low 67 74% 8 12% Middle/High 24 26% 61 88% Note: a Mean and standard deviation 75 CHAPTER 4: STUDY 3 - BARRIERS AND FACILITATORS OF HISPANIC/LATINO PARENTS’ CAREGIVING FOR A CHILDHOOD CANCER SURVIVOR ABSTRACT Background: Greater understanding of the caregiving experience among parents of childhood cancer survivors (CCS), particularly Hispanic/Latino in safety-net hospitals, is needed to improve disparities and decrease perceived caregiver burden along the childhood cancer continuum to improve their quality of life. This qualitative study aimed to explore Hispanic parents’ perceptions of facilitators and barriers to their caregiving experience. Methods: We conducted semi-structured phone interviews with 15 Hispanic/Latino parents (English and Spanish). Parents were recruited using a purposive sampling method in a safety-net hospital in Los Angeles County from July-September 2020. Interviews were audio-recorded, professionally transcribed, and analyzed in the language they were conducted. Two coders independently coded interviews following reflexive thematic analysis and elements of grounded theory methodology. Results: Most caregivers were mothers caring for CCS of leukemia who had finished treatment more than two years prior. Four themes emerged as facilitators to caregiving: 1) familial flexibility and fluid roles in relation to caregiving; 2) external financial resources and assistance in navigating the application process; 3) caregivers’ self-described “relationship with God”; and 4) a positive relationship with the medical care team. Caregivers expressed gratitude to social workers for introducing and aiding with the application process for safety-net programs. These programs enabled sufficient financial stability to focus on their child's care and well-being. Caregivers revealed the importance of having supportive communication to better trust their 76 medical team in providing care to their child, and this was particularly important after their child’s treatment was considered complete. Four themes were identified as barriers to caregiving: 1) large burden and magnitude of caregiving responsibilities; 2) financial hardships; 3) illness misconceptions; and 4) uncertain immigration and citizenship status. All caregivers expressed concerns about the overwhelming nature of caring for a child with cancer, and many described deteriorations in their health and well-being. Financial instability, transportation difficulties, and work disruptions were identified as barriers, resulting in caregiver distress. Caregivers also shared the challenges they experienced navigating the healthcare system, seeking care despite lack of legal residency, and staying afloat despite limited employment opportunities. Misconceptions about cancer were identified as barriers to caregiving, as caregivers faced negative public perceptions and attitudes influenced by negative cultural stigma (e.g., caregivers described being blamed for their child’s cancer diagnosis). Conclusion: Results from this study provide insight into the personal experiences of Hispanic/Latino parents of CCS who are an understudied population. We identified factors that Hispanic/Latino caregivers found helpful throughout their child’s cancer journey. Shedding light on these factors suggests that improving navigation to resources, supporting access to spiritual and religious networks, and improving relationships with the medical team may reduce the perceived caregiving burden. Additionally, our findings can guide recommendations to address the caregiver burden for this at-risk population at the individual, healthcare system, and policy/legislative level. 77 INTRODUCTION In the United States, parents and childhood cancer survivors (CCS) with lower socioeconomic and education levels, and lack of health insurance have a greater risk for experiencing social inequalities along the childhood cancer continuum. 176 At the time of diagnosis and during the child’s active treatment period, parents of CCS experience a significant financial burden due to direct (e.g., medical and non-medical expenses) and indirect costs (e.g., loss of income). 177 Years after treatment, parents of CCS have a higher risk for poverty 178 and experience financial toxicity due to their child’s cancer diagnosis. 179 Moreover, long-term survivors of childhood cancer experience an increased risk of adverse socioeconomic outcomes, including lower educational attainment, higher rates of unemployment, and annual productivity loss compared to individuals without a history of cancer. 43,176,180 All of this taken together means that parents and CCS are more likely to face challenges with the management of cancer. The period of transition from pediatric cancer treatment to survivorship care is a time when both patient and caregiver needs are not adequately addressed. This is particularly evident in patients from culturally diverse and medically underserved samples. 51,57,181 Hispanic/Latino parents and childhood cancer survivors are more likely to report health disparities due to social and structural determinants of health (SDOH) such as individual and family level socioeconomic status, underinsurance, and immigration status. 182,183 Additionally, in the broader survivorship research it has been found that Hispanic/Latino have greater prevalence of unmet supportive care needs and that age, gender, time since diagnosis, marital status, language, acculturation, and immigration status are factors that are associated with greater unmet needs and limited information. 184,185 Furthermore, specific to the Hispanic/Latino immigrant experience, 78 navigating the healthcare system and immigration legislation act as additional barriers and worsen their quality of life. 185 Safety-net clinics are frequented by low-income, uninsured, or Medicaid recipients, considered vulnerable populations. 186 Given the intersecting complexities of safety-net setting, we partnered with a pediatric hematology-oncology clinic that serves a primarily Hispanic/Latino, recently immigrated, Spanish-speaking, and Medicaid population to conduct a qualitative study. This study aimed to understand the experiences of Hispanic/Latino caregivers of childhood cancer survivors during and after their child’s cancer treatment. Specifically, we examined parents’ perceptions of factors that are facilitators or barriers to their caregiving experience. METHODS We conducted semi-structured in-depth interviews with Hispanic/Latino parents caring for their child diagnosed with cancer. This study was approved by the University of Southern California’s Institutional Review Board (IRB). Recruitment Participants were recruited using a purposive sampling method from July to September 2020. To be eligible, participants had to be: a parent or family member who has acted as a primary caregiver for a pediatric cancer patient who was in remission; the primary caregiver or child self-identified as Hispanic/Latino; and proficient in English or Spanish. The exclusion criteria for this study were: caregivers who were minors; had not provided care throughout their treatment; or if the caregiver or patient were wards of the state or incarcerated. Eligible caregivers of pediatric cancer patients were recruited from a large public safety- net hospital (LAC + USC Medical Center in Los Angeles, CA). Participants were identified 79 based on the inclusion criteria by a pediatric hematology oncologist attending at LAC+USC. A total of 15 Hispanic/Latino parents/caregivers of childhood cancer survivors were recruited as that is an acceptable sample size for qualitative research within the social and health sciences, especially among homogenous participants. 187,188 Further, since all interviews were conducted by the principal investigator (PI), during the data collection process, the researcher made an in-situ decision that the data were adequate to address the study’s research question (e.g., that we reached data saturation). 187 Interview guide The interview guide was designed to specifically address the study’s research question about key components and characteristics of the caregiving experience based on a review of the literature. The list of guiding questions was open-ended and explored four key areas. These topics include (1) caregiver communication with their child, providers, and family, (2) facilitators and barriers for caregivers care for CCS, (3) caregiver psychosocial impact, and (4) child adjustment after completion of cancer treatment (see appendix 3). The present study examined participant responses related to perceived barriers and facilitators for caregivers. Relevant to this study, the interview guide questions included: “what are some things that make it easier for you to take care of your child’s health?” and “what are some things that make it harder for you to take care of your child’s health?” In addition, probes were used as needed to clarify, expand, and understand participant responses. Procedures Data collection After identification, participants were approached in person during their clinical visits or contacted via phone. They were given flyers and a study information sheet in their language 80 preference (i.e., English or Spanish) (See Appendix 1 and 2). If participants expressed interest in the study, then the oncologist (R.C.) contacted the PI (C.O.) over the phone to connect the two. During that initial phone meeting, the PI would discuss the purpose of the study in-depth and schedule them for an interview with the participant. Twenty parents were successfully reached, and all expressed initial interest and were scheduled to be interviewed over the telephone at an arranged time. Among those twenty parents, the primary investigator was unable to complete interviews with five parents as they did not respond after initial scheduling despite being called up to three times. Prior to the data collection, the interview guide was piloted with two Hispanic/Latino parents (one Spanish and one English speaking) and adjusted as necessary. Before each interview, the PI (C.O.) explained the study’s purpose and interview procedure and obtained verbal consent from participants following guidelines from IRB. Interviews were conducted from July to September 2020. Due to the COVID-19 pandemic and stay-at-home advisory in California, we exclusively conducted interviews by phone to ensure patient safety and comply with our institution’s mandates. The interviews lasted approximately 60 minutes and included a short socio-demographic survey administered after the interview (see Appendix 4). Participants were mailed a $25 gift card at the conclusion of the interview. Field notes were taken during the interview and case summaries were written after each interview by the interviewer that described the general impressions and initial ideas related to the research question. All interviews were conducted in English or Spanish based on the participant’s language preference by the PI (C.O.), a bilingual Hispanic/Latina PhD student in health behavior research with training in qualitative research methods. Data management and confidentiality 81 Everything participants shared during their interviews was confidential. The interviews were recorded using a digital audio device and transcribed by a bilingual professional transcription service from January to March 2021. Study staff assigned an identification (ID) number to each individual to protect participants' privacy. If the child’s name was mentioned, it was redacted from transcripts. Only the ID number was used to keep track of each participant during the interview (in the audio recording) and on the survey held in safe, password-protected data servers at USC. Audio recordings are stored on a HIPAA-compliant encrypted server. Data analysis The transcribed data were checked for accuracy by randomly selecting files to review against the audio file. To conserve the meaning of the interviews, they were transcribed and analyzed in the language they were conducted. Analyses of this study followed the six-phase of the reflexive thematic analysis, in which the research team identified, analyzed, and reported themes within the data. 189 Additionally, elements of grounded theory methodology were used to identify processes occurring in the data and memo-writing strategies. 190 First, the primary investigator and a physician resident (C.O. and L.C.), the two bilingual coders, read through all the interview transcripts to understand the caregivers’ stories and overall data patterns. Second, open coding of the data was done inductively and independently by the two coders trained in qualitative data analysis. Identifying codes was done semantically, meaning the coders searched for explicitly stated ideas, concepts, meanings, and experiences. After codes were generated and organized into an initial codebook, the two researchers met with other team members (R.C. and K.M.). In total, five meetings occurred where an external qualitative consultant guided the process. These meetings were an iterative process where the research team discussed and compared the coding scheme and how to proceed with clustering the codes to 82 develop initial themes. These preliminary inductive codes were supplemented by using gerunds to denote observable and conceptual actions in the data. 190 After the research team agreed on the themes and subthemes, a codebook was created (Supplemental Table 7). Transcripts were uploaded into Dedoose, a qualitative data analysis software program to organize data and apply final codes. During this step, the interviews were reanalyzed using the final codebook to facilitate the consistent application of the themes. Analytical memos were also written to document thinking processes and connections within the data. 190 A final set of themes and subthemes were defined, and salient quotes were extracted. If the selected quote was in Spanish, it was translated into English by a bilingual team member; the English quote was then presented in the results. The Spanish version was included as a Supplemental Table to authentically present the participant’s words (see Supplemental Table 8). The Consolidated Criteria for Reporting Qualitative Research (COREQ) 32-item checklist was used to ensure the study rigor (see Supplemental Table 9). 191 RESULTS Participants’ characteristics are shown in Table 8. Caregivers who participated in this study predominantly cared for CCS with leukemia and had finished treatment more than two years ago. They were mainly Spanish-speaking (67%) mothers (93%), with an age range between 23 and 58 years. The majority of participants had less than high school education, had a household income <$40,000, and had public health insurance. Results are categorized by overarching themes of facilitators and barriers to parents' caregiving for childhood cancer survivors in Table 9. Factors that are Facilitators Role of family dynamics 83 Caregivers expressed their gratitude for flexibility and fluidity in family roles that eased the balancing of direct caregiving and other obligations. In one common example, the caregiver’s oldest child (often a daughter) would provide childcare support, allowing one parent to provide direct care to the CSS and the second parent to work for income. Another caregiver (a single parent) shared that her other (non-sick) children moved in with their grandparents while the CCS was in treatment because she needed to dedicate all her time to her cancer-affected child. A few caregivers expressed that formalizing caregiving roles and responsibilities for CCS was important. Both divorced and married parents expressed that alternating and/or dividing caregiving responsibilities resulted in improved parental communication, and both parents developed familiarity with the child’s medical care. Additionally, duty alternation provided respite care for the primary caregiver. Navigating financial resources Faced with financial hardship at diagnosis, caregivers described how the hospital functioned as a connector to support services. The hospital's staff would introduce caregivers to various safety-net programs such as transportation and food services, social security and disability benefits, and financial and housing assistance. Additionally, the hospital’s social worker assisted caregivers in tackling application complexity, stringent documentation requirements, and language barriers. In general, these services/programs helped caregivers stay afloat despite suffering financial deprivation. Caregivers perceived these programs/benefits as a way to gain or maintain financial stability, allowing them to focus on their child's care and well-being. Some parents described how these financial resources helped them stabilize their living situation. 84 “It helped us [get] a place to stay, provided us with mattresses and many things necessary to start living there... And then, little by little, we were able to get ahead. By the time…[my husband] was able to work…we [became] more stable. " - Mother, Spanish-speaking, 36 years Not all families received enough assistance to thrive; one caregiver described these financial resources as allowing for mere “survival”. Another caregiver, a single parent, shared that the only way he could provide for his children during cancer therapy was to receive social security benefits. Relationship with the medical team Caregivers indicated that supportive communication (both verbal and nonverbal) from and trust in their child’s care team was important both during and after cancer therapy. Caregivers found effective and compassionate delivery of information (e.g., sharing diagnosis news, answering parent doubts and questions) to be a source of support. For example, one caregiver appreciated that the doctor first told the parents about the diagnosis and then checked how they wanted to share the news with the patient. Additionally, it was imperative to caregivers that the medical team regularly conveyed information to the patient and caregivers. They assessed understanding regarding details of both cancer treatment and post-cancer-treatment side effects. Caregivers described how their child’s physician showed concern, empathy, respect, and sensitivity by being attentive to both patient and caregiver needs. In one example of a CCS who was diagnosed with anxiety after completion of chemotherapy, the physician routinely called to check in on the family. Trust in the inpatient care team (e.g., doctors and nurses) to guide cancer management facilitated care discussions and improved shared decision-making. Most caregivers described a 85 process of developing trust through repeated positive interactions where availability, responsiveness, and attentiveness were shown. One caregiver put it this way: “They always kept us positive [and] motivated. The nurses [provided] great service.” Another caregiver shared: "Throughout the whole month, they made me feel [as if my child was] the only patient there." - Mother, English-speaking, 35 years Parents also reported the importance of "care continuity" and how it led to comfort within the hospital, making it "a second home". One caregiver recounted why the hospital felt like a second home: “I felt [that the] nurses and all of them [were] like my second family.” - Mother, Spanish-speaking, 48 years Relationship with God or their ‘Creator’ Most caregivers described the importance of having a relationship with God regardless of whether they practiced a religion. During the treatment period, caregivers believed their child would be cured because God had given doctors “science to care for cancer.” A 48-year-old Spanish-speaking caregiver mentioned that she relinquished control because she trusted God would “put it in the best hands of the doctors…and that he reaches the hands of everything they did.” After treatment, a 41-year-old Spanish-speaking caregiver identified that God was her “insurance” and described that she managed her fear that her child’s cancer would return with her belief that “he is the one who covers [her] for everything and protects [her] from everything”. Their relationship with God was also a source of emotional strength. Caregivers emphasized that their faith in God gave them “all the strength, the security, and support [they needed]”. One participant described how through her relationship with God, she discovered the 86 strength she needed to provide care for her child without becoming overwhelmed. The 48-year- old Spanish-speaking participant explained that cancer therapy was a “difficult process, but [God] gave [them] the strength to overcome it.” Caregivers described the effect of receiving a cancer diagnosis on their religiosity and the consistency of their practice. A 43-year-old Spanish-speaking caregiver recalled, “...now that my son got sick, every day, I started to pray, to thank God for one more day of life.” Overall, caregivers found their religious practice to be an effective coping mechanism. They described how God held them together [“el me sostuvo”]. “I started to pray and ask God to be calm.... [I read] many prayers from the Catholic Church.... [I read] some prayers to sleep, so that I can rest.” - Mother, Spanish-speaking, 43 years “Because I was pregnant, I did not eat, I did not sleep, and…He always kept me well. [He] kept my pregnancy well." - Mother, Spanish-speaking, 41 years Factors that are Barriers Magnitude of caregiving responsibilities All parents expressed how caregiving resulted in fatigue and feelings of caregiving hopelessness. Frequent doctor visits, complex medication regimens, and prolonged hospitalization stays all complicated caregiving. Hospital stays were especially challenging for those with other children at home to care for as caregivers found themselves torn between being at the hospital with the patient or at home with other children. Caregivers also describe being fearful of CCS interacting with others because their child is immunocompromised from their cancer treatment. One caregiver stated: 87 "You don't want to isolate him...but unfortunately, that's how it has to be for him to get better". - Mother, English-speaking, 35 years Caregivers also highlighted the difficulties of balancing caring for themselves and the patient. In one extreme example, one caregiver had two strokes during her child’s therapy but could not stop caregiving. Minimal sleep, interrupted rest in the hospital, and mental/emotional challenges all contributed to caregiver burnout, and caregivers found little time for self-care. Caregivers expressed struggles with a perceived necessity to conceal distressing emotions from their children as well. Even with access to supportive resources, caregivers describe struggles with burnout: “[Nobody] understood what [I] needed, or… [that I] needed that time just to sit there and eat a full meal comfortably [emotional], just not worrying about anything. Or being able just to be, just to have a breather, a day where you don’t have to worry about anything. A lot of people don’t have that. And it was really, really, really hard.” - Mother, English-speaking, 30 years Even after completion of cancer therapy, caregivers experience flashbacks emotions in triggering environments. A 41-year-old Spanish-speaking caregiver described her unprocessed emotional traumas and a persisting fear of losing her child to cancer relapse and that she is afraid to "put [her] guard down." The majority of caregivers described helplessness regarding both the ability to provide support and a sense of control over the outcome. They saw their child in pain without the ability to help exacerbated the feeling of helplessness. Witnessing substantial deterioration in physical health and behaviors (e.g., weight loss, insomnia, and food intake) was tough as caregivers 88 struggled to provide help with limited knowledge. Emotionally they also struggled while pretending to be “strong” while constantly giving positive encouragement to the patient and siblings. However, sometimes caregivers recall that they would not know how to provide reassurance at times. In addition, caregivers indicated that assisting patients with their psychological health (e.g., emotional, mental, and behavioral) impacted their own well-being (primarily mental health). Caregiver reported mood swings and resistant attitudes, which caregivers attributed to medication side effects. Unpredictable emotions compounded with a lack of knowledge on methods to effectively provide discipline in the setting of a chronic illness resulted in caregiver frustration and despair. One caregiver mentioned that during these mood swings, her child would become angry at her or get extremely depressed. Another caregiver shared how her child would blame her for events out of her control, placing a strain on their relationship. “She thought [I] was a bad mom…Because every time they would do something to her [like] biopsies, I was there with her… I don't think she understood what was going on at that age.” - Mother, English-speaking, 32 years Caregivers also described situations in which CCS mood disorders (e.g., depression, anxiety) arose during and after treatment and were often associated with necessary anti-cancer medications and/or due to the stress of therapy. Some patients developed psychosis or delusions (e.g., schizophrenia spectrum disorders), which often impacted caregivers and their perceptions of well-being and safety. For example, one caregiver shared that her child “heard voices” and would cry all the time: 89 “She [started] psychological treatment because it was already too much…In fact one night, she got up and the voices told her to kill us and things like that. It was already a danger.” - Mother, Spanish-speaking, 36 years Encountering financial hardships Financial instability, transportation difficulties, and work disruptions were all disclosed as barriers to caregiving. Caregivers had difficulties paying rent and bills, experienced hunger and food insecurity. Some described having to sell or pawn possessions, and some experienced housing instability and/or homelessness. Several caregivers described the stress and challenges of living with an unstable income as their partners could only find work as day laborers [“jornalero”]. Some (often single) caregivers described their struggle to provide both income and full- time caregiving, forcing them to accept public financial assistance (Social Security benefits). Other caregivers recalled struggling to provide for their families despite not qualifying for public financial aid. Among all caregivers, financial worries manifested as a strain on mental well- being, with fears of "living in the streets" resulting in anxiety and feelings of depression. Caregivers struggled with work disruptions. From the time of the diagnosis, most caregivers had to miss some work; others felt they had little choice but to stop working to provide care effectively. For many, losing even a single day of work was detrimental for both lost income and job security. Caregivers shared how they would be laid off or fired from work and described the difficulty in maintaining a job or finding a job that would not retaliate after missing work to provide care. For single parents, work disruptions were essentially unavoidable, and married caregivers also experienced this form of financial stress. 90 “And my husband actually worked, but every time I called him, he went to the hospital [for our child]. And well, he wasn't working that day ... And [then] I said to him: ‘Where are we going to get money for rent? For the bills? ‘Which is gas, electricity. Where are we going to get money from?’" - Mother, Spanish-speaking, 43 years Transportation difficulties were frequently mentioned as a barrier to caregiving. Many families had access to a single car or did not own a vehicle, creating challenges to access treatment and post-treatment surveillance. Caregivers found public transportation stressful due to their child's fragile health, especially when they needed to take multiple buses. Additionally, traveling long distances, paying for bus route transfers, and/or having to pay for multiple family members was a financial burden. Navigating both the transportation system and the complex urban topography was particularly challenging to recent immigrant families. Further, when caregivers were limited to one car, attending to the child's medical care needs often meant missing or leaving work, resulting in financial stressors. Immigration and citizenship status Caregivers shared their anxieties surrounding lack of legal residency status. Caregivers reported that the fear of deportation compounded on fear arising from their child’s cancer, particularly associated with possibility of familial separation. Lack of legal residency status also limited employment opportunities, and those that were available often lacked stability. One caregiver described that when she applied for social services, her mixed-status household and the nature of her husband’s employment made it difficult and stressful: “I went to take the application to get food stamps, and they asked me for... verification of [the] work of the father of my daughters. He is a day laborer. He goes out [each day] to 91 see if they give him a job. If he was lucky, he [would work that day] and if not, he comes back [home] ... so how do I do the verification?” - Mother, Spanish-speaking, 48 years Caregivers also described that not having any extended family members in the United States limited the amount of familial support they could receive, and as a result, they often felt “alone.” More than one caregiver stated that “[I] did not have anyone [here]”. This was echoed by another caregiver who shared: “I have acquaintances, but no direct family…Just friends. - Mother, Spanish-speaking, 36 years Illness misconceptions Caregivers found that misconceptions about cancer were a common barrier to caregiving; public perception and attitude about the diagnosis often resulted in a negative cultural stigma. Religion was sometimes perceived as an opposing force in the lives of caregivers; they described individuals that would constantly blame parents for the child’s diagnosis using their religious beliefs as the justification. One parent recalled being told that their child’s diagnosis was a punishment for the parents’ sins and that they were “paying [their] dues.” Additionally, some caregivers received unqualified medical advice in the form of religious beliefs (e.g., advice to avoid medical treatment and/or to substitute religious practice for medical therapy). Caregivers also felt stigmatized for having a child with cancer and/or "rejected" ("rechazada") by family/friends due to the delicacy of their child’s health. Caregivers reported hearing insensitive comments regarding the cancer diagnosis, and some thought these negative public perceptions and attitudes resulted from ignorance surrounding childhood cancer. "People [don't] realize that little kids get [cancer] as well, not just older people". 92 - Mother, English-speaking, 30 years Caregivers also relayed accusatory stigma stemming from cultural beliefs that hindered relationships and how these accusations would stem from a common harmful perception of the disease. More than one caregiver shared how family members would blame the child's cancer diagnosis on the caregiver and impacted familial relationships. “Mexican people or Latin people think that you get sick because you don't take care of yourself... It's hard for people to accept that...something is just wrong naturally." - Mother, English-speaking, 30 years DISCUSSION This study captured the perspective of Hispanic/Latino parents of childhood cancer survivors on the facilitators and barriers to caregiving. Four themes emerged as facilitators to caregiving: 1) familial flexibility and fluid roles in relation to caregiving; 2) external (often public) financial resources and assistance in navigating the application process; 3) caregivers’ self-described “relationship with God”; and 4) a positive relationship with the medical care team. Additionally, caregivers revealed challenges that acted as barriers to caregiving: 1) large burden and magnitude of caregiving responsibilities; 2) financial hardships; 3) illness misconceptions; and 4) uncertain immigration and citizenship status. These results provide greater insight and detail about the complexities and factors that impact cancer care management for highly underserved Hispanic/Latino caregivers. More importantly, the results indicate specific resources and coping behaviors that facilitate caregiving. We found that lack of legal residency status and challenges of living with unstable income were identified as barriers to caregivers and that these may exacerbate caregivers' stressors. Caregivers mentioned it was difficult to balance being a full-time caregiver and 93 financially providing for their families. These findings are consistent with previous studies that have demonstrated that parents with lower household incomes, defined as <200% Federal poverty level (FPL), are more likely to report financial hardships and income losses because of work disruptions compared to those in higher-income households. 192 Additionally, parents with income at <200% FPL also disproportionally report that financial burden affected their general distress and anxiety symptoms compared to those in higher-income households. 193 Our study provides insight on how for Hispanic/Latinos caregivers, the blend of financial and legal status barriers create resource gaps and may adversely impact cancer care management. 194 For instance, lack of legal residency or having a mixed-status household makes additional challenges such that multiple caregivers mentioned they lacked job security and employment benefits. Some parents said they did not have enough financial support despite qualifying for government assistance. On the other hand, we also found that financial resources and assistance can make the cancer experience more manageable for Hispanic/Latino caregivers and childhood cancer survivors, especially for foreign-born and immigrant populations. Generally, Hispanics/Latinos have lower socioeconomic positions and education status than non-Hispanic white populations, which has been shown to impact access to and quality of health care such as receiving timely care, difficulties navigating the United States healthcare system, and unmet cancer information and psychosocial needs. 120,195-197 Patient navigation has predominantly been used for cancer screening and adherence to cancer survivors' follow-up care. 120,198 Our study revealed the importance of public assistance and support in navigating safety-net programs and applications for Hispanic/Latino caregivers of childhood cancer survivors. Caregivers universally expressed gratitude and ongoing appreciation of social workers connecting them to support services and acting as their patient navigators. They assisted them in addressing issues related to 94 transportation and food services, social security and disability benefits, and financial and housing assistance. Caregivers in our study identified that their relationship with God was highly important for them throughout their child’s cancer journey. A growing body of literature demonstrates that Hispanic/Latino adult cancer survivors and spousal caregivers consider religion a source of support and endorse using religion or spiritual beliefs as a coping mechanism for psychological distress. 120,199 In our study, caregivers, indicated that their relationship with God was a source of emotional strength, and practicing their religious activities was a coping mechanism to manage their fears of cancer and cancer recurrence. This is in line with a previous review of Latino caregivers of their children with illness or chronic conditions that showed the importance of religion and spirituality as a coping strategy for parents. 200 Taken together, our findings suggest that supporting access to spiritual and religious networks may reduce the caregiving burden throughout the cancer continuum. However, our results also indicate that some caregivers had negative experiences with religious people who blamed them for their child’s cancer diagnosis. This finding supports the notion that negative religious beliefs impact health behaviors and outcomes. 201,202 Regarding negative religious beliefs and their adverse effects, our results are particularly relevant as it also suggests that the social environment of faith-based organizations or churches can be targeted to improve cancer misinformation and stigma. The cultural value and practice of having a familism orientation, which reflects the desire to be actively involved with healthcare management, 203 is one mechanism that may underlie the findings in this study. For instance, caregivers revealed that it is important for the patient and caregiver to receive information about cancer therapy and post-treatment surveillance. However, our findings also highlight the importance of providing educational/informational tools for 95 parents to share with family and/or friends. In our study, caregivers shared that lack of knowledge regarding cancer diagnosis and cancer-related care was reported as a barrier to caregiving as it meant caregivers lacked confidence, they experienced negative cancer stigma about their child’s diagnosis, and family and/or friends did not know how to support them. Studies indicate a lack of knowledge about cancer survivors' and caregivers' needs among Hispanics/Latinos. 120,199,204 Similar to previous findings, we found that cancer-related stigma was a barrier related to parents’ feelings of isolation from family and friends. 53 Resources and/or trainings to improve communication with extended family about child cancer diagnosis may ease caregiver stressor and feelings of social isolation. It may be possible that this unmet need could be addressed by social workers in the hospital/clinic setting as Hispanic/Latino parents and CCS are more likely to receive health information from hospital resources compared to non-Hispanic white populations. 118,119 Strengths and Limitations Strengths of the study include the focus on a sample of Hispanic/Latino caregivers whose child receives care at a safety-net hospital. We applied different data collection and analysis procedures to ensure the study's rigor, including memoing throughout data collection, analysis, and interpretation. Limitations in this study must also be acknowledged. The first caregivers of CCS were recruited from a single clinical site. Participants in this study were mostly mothers who cared for a child with leukemia. Thus, fathers and children with other cancer types may have different experiences not captured in our study. However, leukemia is the most common childhood cancer, and mothers are frequently the primary caregiver for their children. Second, Hispanic/Latino participants mainly were of Mexican descent and the experience of other subgroups may differ, especially if the parents were born in other countries. Data collection also 96 has limitations since all interviews were conducted by phone instead of face-to-face. This interview technique may have influenced what participants were comfortable sharing and limited nonverbal communication. However, previous methodologic studies suggest that phone interviews are beneficial and strengthen the effectiveness of qualitative data collection. 205 CONCLUSION Cancer care could be more accommodating to underserved Hispanic/Latino caregivers to help effectively address the burdens of caring for sick children and managing financial, familial, health, and well-being outcomes. Understanding the personal experiences of parent caregivers, an understudied population, is an important issue as they can share their experiences and provide recommendations at various levels. Their message can influence the familial experience of other caregivers, local healthcare settings, or contribute to legislative efforts. Our findings underscore the need to integrate routine assessment of socio-economic needs and the implementation of referral systems that incorporate patient navigators in clinical care practice for Hispanic/Latino families. Of particular importance is that these services be provided by bilingual healthcare providers that understand and are aware of local policies as they may hinder Hispanic/Latino families. Future studies can use a dyad approach to qualitatively explore the perceptive of CCS and parents regarding the facilitators and barriers to cancer care. 97 Table 8. Participant characteristics (n=15) Demographic characteristics N (%) PARENT Language Spanish 10 (66.7%) English 5 (33.3%) Gender Male 1 (6.7%) Female 14 (93.3%) Age in years, range 39 (range: 23-58) Marital status Single 2 (13.3%) Married/Living with partner as married 10 (66.6%) Divorced/Separated 3 (20%) Highest education level <Highschool 9 (60%) Highschool/GED 3 (20) Some college/vocational training 3 (20%) Household income <20,000 5 (33.3%) 20,000-39,999 5 (33.3%) 40,000-59,999 3 (20%) 60,000-79,999 2 (13.3%) Household composition Range: 5-9 Type of health insurance Public 8 (53.3%) Employment (private) 2 (13.3%) None 5 (33.3%) Childhood cancer survivor Cancer type Leukemia 10 (66.7%) Hodgkin’s Lymphoma 2 (13.3%) Other 3 (20%) Age at time of diagnosis Range: 1-14 years Current age Range: 5-22 years Gender Male 9 (60%) Female 6 (40%) Length of time finished treatment <1 year 4 (26.7%) 1-2 years 2 (13.3%) 2+ years 9 (60%) Note. N varies so presented valid percentage excluding missing information. 98 Table 9. Major themes of barriers and facilitators of parents caregiving for childhood cancer survivor Barriers Magnitude of caregiving responsibilities Encountering financial hardships Illness misconceptions Immigration and citizenship status Facilitators Role of family dynamics Navigating financial resources Relationship with God Relationship with medical care team 99 Supplemental Table 7. Full Codebook describing Facilitators and Barriers to Caregiving CODE SUBCODE DESCRIPTION FACILITATOR FACTORS (1) ROLE OF FAMILY DYNAMICS Family adaptation and accommodations to illness Caregivers express gratitude of evolving/shifting in family roles which help caregiver balance their responsibilities of cancer and everyday task. Division caregiving responsibilities Formalizing caregiving roles and responsibilities within family specific to CCS including change in parental relationship, assistance in caregiving task and navigating healthcare. (2) NAVIGATING FINANCIAL RESOURCES Hospital as connector to make ends meet Hospital's introduce and/or help caregivers navigate safety-net programs that exist which they may qualify for. Staying afloat while suffering financial deprivation Caregivers perceive these programs/benefits as financial stability which allows them to maintain their focus on their child's care/well-being. (3) RELATIONSHIP WITH MEDICAL TEAM Supportive communication Both verbal and nonverbal communication provided by healthcare team during time of distress that assists parents. Trusting care team Trust was built with inpatient care team (e.g., doctors and nurses) to guide medical care (e.g., medication/treatment regimen) which helped to facilitate goals of care discussions and improve shared decision- making. (4) RELATIONSHIP WITH GOD Finding strength Seeking God's presence for emotional strength to care for CCS. Relinquishing control and trusting god Faith in God that he will cure CCS, that cancer will not come back, and that CCS will be safe from Covid-19 virus. Practicing religious activities Helps CG maintain own well-being and is a way to show appreciation to God. BARRIER FACTORS Caregiver intensity and fatigue High caregiving demand result in exhaustion and have toll on their own health and well-being 100 (1) MAGNITUDE OF CAREGIVING RESPONSIBILITIES Dealing with CCS behavioral or psychological health Assisting CCS with their behavioral, emotional and mental health impacted their own well-being (mostly mentally). Caregiver hopelessness Situations in which caregiver describes not being able to provide CCS with any support and/or lacked control over outcome. (2) ENCONTERING FINANCIAL HARDSHIPS Caregiving resulting work disruptions Losing one day of work for these patients is a lot more detrimental to these families. Transportation difficulties Lack of or limited (only one car) which created challenges for treatment and post-treatment surveillance. Financial instability and stress Experienced threat of ongoing debt or insufficient income which resulted in mental and emotional distress. (3) IMMIGRATION AND CITIZENSHIP STATUS Family outside of U.S. Family's inability to provide emotional and physical support as a result of being outside of the U.S. Challenges navigating U.S. Describe challenges they encountered with everyday activities and navigating U.S. health care system as a result of their immigration and/or citizenship status. (4) ILLNESS MISCONCEPTIONS Public perception and attitudes Caregivers refer to public’s understanding of cancer (e.g., perception) and negative attitudes towards child being diagnosed. Cultural stigma Latino cancer stigma blamed for CCS cancer and impacted familial relationships. 101 Supplemental Table 8. Selection of Spanish quotes English Translation (Page Number) Spanish quote 84 “Los ayudó con la vivienda y les proveyó colchones, muchas cosas necesarias para que empezaran a vivir ahí... Y pues poco a poco ahí fuimos saliendo, fuimos saliendo adelante. Ya cuando…sea pudo trabajar … ya un poquito más, más estable." 85 “Aquí es mi segunda casa. Porque yo sentía, yo, para mí las enfermeras y todos ellos yo los sentía como mi segunda familia” 85 “"Con miedos a veces, sí, en que vuelva a regresar esto, pero de repente así pues me pongo a pensar y siento como… él es mi aseguranza y es quien me cubre de todo y me protege de todos” 85 “Ese es mi Gran Creador que me dio siempre toda esa fuerza, esa seguridad y el apoyo." 86 “Yo sé que este proceso que estamos pasando es un proceso muy difícil, pero tú nos vas a dar las fuerzas para sobresalir esto.” 86 “Y ahora que mi hijo que se enfermó, todos los días ya, me puse así a rezar, a darle gracias a Dios por un día más de vida, también." 86 “Me puse a rezar y a pedirle a Dios que estuviera tranquila.... [Lea] muchos rezos de la Iglesia Católica... [Lea] unas oraciones para dormir, para que descanse.” 86 “Porque yo estaba embarazada, yo no comía, no dormía, y el me mantuvo siempre bien. Mantuvo bien mi embarazo." 89 “Estuvo en tratamiento psicológico porque ya era demasiado…De hecho una noche ella se levantó y que la voz le decía que nos matara y cosas así, pero ya era un peligro.” 90 “Y mi esposo de hecho trabajaba, pero cada que yo lo llamaba él se iba al hospital. Y pues no trabajaba en ese día... Y depues yo le decía: '¿De dónde vamos a agarrar dinero para renta? ¿Para los bills?', que es el gas, la luz. '¿De dónde vamos a agarrar dinero?’’ 90-91 “Yo fui a llevar la aplicación para agarrar estampillas y me pidieron...verificación de trabajo del papá de mis hijas. Él es jornalero, ambulante. Él sale a ver si le dan trabajo. Si tuvo suerte se fue y si no, se regresa...entonces, ¿cómo le hago ahí la verificación?” 91 “Tengo conocidos, pero familia directa no…No tenemos a nadie. Solo mi amiga.” 102 Supplemental Table 9. COREQ Checklist No. Item Guide questions Page/section reported Domain 1: Research team and reflexivity Personal characteristics 1. Interviewer/facilitator Which author/s conducted the interview or focus group? Procedures, Page 80 2. Credentials What were the researcher's credentials? E.g., PhD, MD Procedures, Page 80 3. Occupation What was their occupation at the time of the study? Procedures, Page 80 4. Gender Was the researcher male or female? Procedures, Page 80 5. Experience and training What experience or training did the researcher have? Procedures, Page 80 Relationship with participants 6. Relationship established Was a relationship established prior to study commencement? Procedures, Page 79 7. Participant knowledge of the interviewer What did the participants know about the researcher? e.g., personal goals, reasons for doing the research N/A 8. Interviewer characteristics What characteristics were reported about the interviewer/facilitator? e.g., Bias, assumptions, reasons, and interests in the research topic N/A Domain 2: study design Theoretical framework 9. Methodological orientation and Theory What methodological orientation was stated to underpin the study? e.g., grounded theory, discourse analysis, ethnography, phenomenology, content analysis Data Analysis, Pages 81-82 Participant selection 10. Sampling How were participants selected? e.g., purposive, convenience, consecutive, snowball Recruitment, Page 78 11. Method of approach How were participants approached? e.g., face-to-face, telephone, mail, email Procedures, Page 79 12. Sample size How many participants were in the study? Recruitment, Page 79 13. Non-participation How many people refused to participate or dropped out? Reasons? Procedures, Page 80 Setting 14. Setting of data collection Where was the data collected? e.g., home, clinic, workplace Procedures, Page 80 103 15. Presence of non- participants Was anyone else present besides the participants and researchers? N/A 16. Description of sample What are the important characteristics of the sample? e.g., demographic data, date Results, Page 82 Data collection 17. Interview guide Were questions, prompts, guides provided by the authors? Was it pilot-tested? Interview Guide (Page 79); Procedures (Page 80) 18. Repeat interviews Were repeat interviews carried out? If yes, how many? N/A 19. Audio/visual recording Did the research use audio or visual recording to collect the data? Data management & confidentiality, Page 81 20. Field notes Were field notes made during and/or after the interview or focus group? Procedures, Page 80 21. Duration What was the duration of the interviews or focus group? Procedures, Page 80 22. Data saturation Was data saturation discussed? Recruitment, Page 79 23. Transcripts returned Were transcripts returned to participants for comment and/or correction? N/A Domain 3: analysis and findings Data analysis 24. Number of data coders How many data coders coded the data? Data analysis, Page 81 25. Description of the coding tree Did the authors provide a description of the coding tree? Data analysis, Page 81-82 26. Derivation of themes Were themes identified in advance or derived from the data? Data analysis, Page 81-82 27. Software What software, if applicable, was used to manage the data? Data analysis, Page 82 28. Participant checking Did participants provide feedback on the findings? N/A Reporting 29. Quotations presented Were participant quotations presented to illustrate the themes/findings? Was each quotation identified? e.g., participant number Results, Page 82-92 30. Data and findings consistent Was there consistency between the data presented and the findings? Results, Page 82-92 31. Clarity of major themes Were major themes clearly presented in the findings? Results, Page 82-92 32. Clarity of minor themes Is there a description of diverse cases or discussion of minor themes? Results, Page 82-92 104 CHAPTER 5: OVERALL DISCUSSION SUMMARY OF FINDINGS This mixed-method dissertation focused on the relationship between childhood cancer survivors, their caregivers, and their medical providers and it sought to contextualize this triadic relationship. Specifically, the three study aims were to (1) examine the influences of triadic communication on engagement with healthcare, (2) to look at the bidirectional influences on psychosocial health, and (3) to qualitatively explore the barriers and facilitators that Hispanic/Latino caregivers experience. Studies one and two were secondary data analyses of an existing dyad dataset. Study three was a primary data collection that used in-depth interviews of parents to provide a broader understanding of the caregiving experience to extend our knowledge of the quantitative studies and spark new areas of inquiry. Study one found that within our sample, there were three distinct triad communication classes: high healthcare-focused communication, a high comprehensive communication, and overall low communication. Our results partially supported the study’s hypotheses, as participants who reported a greater time since diagnosis were less likely to belong in the high comprehensive communication group and there appears to be a marginal association that dyads with Spanish-speaking Hispanic parents were more likely to belong in the high comprehensive communication group. Additionally, we found that those who belonged in either of the high communication groups revealed a marginal association that suggests they were more likely to have received recent follow-up care at Survey 1 but not Survey 2. These findings improve our understanding of communication patterns and indicate that communication skill training is needed for this triad which may be beneficial to improve YACCS long-term follow-up care. 105 Study two looked at “spillover effect” phenomena by examining the bidirectional influences of social support, spirituality, and religiosity on depressive symptomology and perceived stress among YACSS and parent dyads. Once again, we found that our hypotheses were only partially supported. Consistent with our hypotheses and prior studies, we found that for both YACCS’s and parents, their perception of their social support was related to their level of depressive symptoms and perceived stress. In addition, we found that only YACCS social support was related to their parents' depressive symptoms and perceived stress. Previous studies with older adult survivor-caregiver dyads have been inconclusive about this partner effect as one study found significant effects for both survivors and caregivers while other studies found that only caregivers social support impacted survivors' mental health. 169-171 Thus, our findings indicate that the type of dyad relationship (e.g., couples or parent-child) is important to consider when exploring bidirectional relationships. Study three used a qualitative approach to identify Hispanic/Latino parents’ perceptions of facilitators and barriers to their caregiving experience in a safety-net hospital. This study revealed that multilevel factors impact Hispanic/Latino parents’ cancer care management. At the individual level, the magnitude of the caregiving responsibility acted as a barrier, while parents' self-described “relationship with God” acted as a facilitator. Interpersonal relationships, including familial flexibility and fluid roles in relation to caregiving and a positive relationship with the medical care team, were facilitators for caregivers. However, others' perceptions or misconceptions of their child’s illness were a barrier to caregiving. At the organizational and policy level, external financial resources and assistance navigating the application process were beneficial for parents. While issues related to financial hardship and uncertain immigration and citizenship status resulted in caregiver distress and challenges 106 navigating the healthcare system. These findings can guide recommendations to address caregiver burden for this at-risk population at various levels, including suggestions for the healthcare system and policy level. Collectively, the results of these three studies demonstrate that beyond individual-level factors, interpersonal relationships are meaningful and complex for this population. Findings from studies one and two show that the interpersonal processes of communication and social support may influence mental health and healthcare engagement. Study three findings suggest a need to increase financial assistance and patient navigation resources. Further, our results highlight the intersecting role of employment and immigration status, which allude to how policies can hinder accessing services and impact caregivers' well-being. IMPLICATIONS OF FINDINGS Theoretical Implications This dissertation was grounded in the newly proposed Theory of Dyadic Illness Management. 112 The central element is that dyads are an interdependent team that influence behaviors, management, and health outcomes. Our findings support using this theoretical framework within our child ‘cancer survivor’ and parent ‘caregiver’ population, which has not been previously explored. Existing research has utilized family system theories that limit the focus of studies to examine only the individual outcomes instead of interpersonal processes and health. 112 Thus, our results suggest that we need to consider interpersonal relationships and the critical cultural context that may impact these relationships within this unique and understudied population. Methodological Implications 107 Three analytical methods were used to address this dissertation's different aims, which included Latent Class Analysis (LCA), Actor-Partner Interdependence Models (APIM), and Thematic Analysis. LCA and APIM methods are considered robust ways of analyzing dyad data as they consider patterns within the sample and control for individual and interpersonal factors simultaneously. Future studies would benefit from using improved measures that examine our independent variables more robustly and covariates that consider contextual factors that may influence these relationships. The analytical approach for the qualitative interviews provided insights regarding aspects not explored in the quantitative study. Additionally, the qualitative findings suggest that future studies should investigate these relationships at the intersection between employment and immigration status and race and ethnicity and socioeconomic position. Ultimately, our knowledge of the relationship between childhood cancer survivors, parents, and medical providers was advanced by our analytic methods and the novel methodology of an ethnically diverse population. Practical Implications Taken together, studies one and two address gaps in the literature, and each contributes to scientific advances in understanding dyadic processes and health outcomes. Recent systematic reviews identified a growing emphasis on dyadic interventions for couples coping with cancer, 206 adult cancer patients-family caregivers, 207 childhood survivors and their immediate family. 208 The most common intervention component to improve multiple aspects of quality of life is psychoeducational and skill training. 208,209 Psychoeducational and skills training include self- esteem, self-care, self-management, stress management, coping mechanisms, relationship enhancement, problem-solving skills, and family cohesion. Therefore, building on this literature and using our study findings, it would be important to use the dyadic framework from the 108 developmental phase. And that the goal of the intervention be to improve psychosocial outcomes of both parent and CCS through a collaborative effort, as this has been lacking in the current efforts. This type of intervention should incorporate dyadic appraisal, from the Theory of Dyadic Illness Management, specifically targeting how dyads appraise their cancer experience. 112 The intervention can do this by assessing dyads' stressors (e.g., primary appraisal”) and targeting these stressors through psychoeducational skills (e.g., secondary appraisal”). 113 One intervention element could be to use cognitive-behavioral and family therapy approaches to focus on targeting specific stressors (e.g., thoughts and behaviors) that dyads experience as they transition into long-term survivorship. For example, this would tackle relevant cognitive-behavioral therapy strategies such as mindfulness, communication skills, and emotional and spiritual coping resources to facilitate teamwork and collaboration. A second intervention element could target joint problem-solving skills, which would focus on normalizing supportive discussions, combating demands and expectations, and support-seeking behaviors within dyads. The third element of this intervention could be to incorporate strategies that consider social and culturally relevant factors. For instance, consider how familismo may play a role in the dyad's appraisal and preferred coping strategies. 120 Based on the existing intervention research, which shows that there is some evidence that both members of dyads quality of life improve, it would be anticipated that minimally dyads with greater cancer-related distress and poorer communication skills would find this proposed intervention beneficial. 206 Furthermore, Study 3 also addresses a significant gap in the literature by giving voice and exploring the perspective of highly underserved Hispanic/Latino parents. Findings for this study build evidence to inform policy recommendations for clinical practice and broader public health 109 legislations. In clinical practice, integrating systemic and routine assessment of psychosocial health and social determinants of health for both caregivers and cancer survivors can improve the identification and delivery of supportive services. 210 Additionally, last year, the State of California updated the Paid Family Leave (PFL) Act and the California Family Rights Act (CFRA) to expand the protection of job-protected leave and supplement income for caregivers to 8-12 weeks (California Caregiver). 211 While eligibility of PFL benefits is not affected by citizenship and immigration status it requires that individuals pay into State Disability Insurance (SDI), which our findings demonstrate does not consider health equity. 212 For example, parents in our study discussed that their type of employment prohibited them from accessing certain social services and job protection. Moreover, the changes to the CRFA that reduced the business size threshold to 5 or more employees should, in theory, make more workers eligible for job protection. However, if wage replacement through PFL is not an option for these workers, they would not seek these benefits. Therefore, additional changes to these laws are necessary for the equitable implementation of these policies among immigrant populations. OVERALL LIMITATIONS These dissertation studies are not without limitations. Study one and two were secondary analyses of the Project Forward pilot study, which means there were limitations in variables of interest explored and included in models. Despite the sampling frame of population-based survey methods, the dyad response rate differed by Hispanic ethnicity and age of childhood cancer survivors. Hispanics and CCS older than 21 years of age were less likely to respond to the survey at the time of survey completion. 161 These sample biases were included in each study's methods and limitation section. Additionally, we also controlled for CCS age at the survey in our analysis and Hispanic ethnicity when it was not our independent variable of interest. Another potential 110 type of bias is recall bias which can exist whenever information is self-reported. Participants were asked to remember past events or experiences; therefore, data may be inaccurate or incomplete. 213 This type of bias can lead to misclassification of various types of exposures. For instance, the questions that assessed parents’ cancer-related information and CCS follow-up care in the past two years may be prone to memory issues. In most cases, it is challenging to eliminate this bias because we cannot verify individuals' self-reported information against another. Lastly, participating in each study may have resulted in social desirability bias for all studies. Participants' responses were based on what they thought the researchers might want to hear. 214 FUTURE RESEARCH DIRECTION To overcome limitations with our sample, researchers should conduct studies with larger sample size. Future studies should strive for more diverse samples to help improve our understanding of communication among this triad and healthcare engagement and dyadic relationships. In addition, longitudinal study design would help test causal relationships within this topic and is warrant. Results from all three studies suggest that future research should include survey measures that assess social determinants of health (SDOH). SDOH are the conditions in which people are born into and living with that influence health outcomes and can lead to health disparities. 215 According to Healthy People 2020, there are five key areas: social and community context, education access and quality, economic stability, health care access and quality, neighborhood and built environment. For Hispanics/Latinos, there is a greater concern that they will experience many of these SDOH conditions poorly. 216 Thus, when exploring cancer health disparities, it is important to consider other related factors contributing to these inequities. Specifically, there is a need to integrate socioeconomic and cultural factors as it is proposed that they indirectly 111 contribute to cancer outcomes through psychosocial factors. 120 There is strong evidence suggesting that socioeconomic factors such as income, age, education, and access to healthcare are related to quality-of-life outcomes for Hispanic/Latino cancer survivors. 120 Additionally, there is evidence that cultural factors may shape coping strategies throughout the cancer experience; these may include language, nativity, acculturation, and cultural values such as familismo. 120 Moreover, the current studies clearly emphasize the need for qualitative research to better understand Hispanic/Latino parents’ lived experiences, including barriers and facilitators they encounter while caring for a child with a cancer diagnosis. Such research should further investigate this in different country regions, Hispanic/Latino subgroups, and more male caregivers’ perspectives. This would likely reveal most pertinent issues and can aid in developing future measures. 112 REFERENCES 1. Ward E, DeSantis C, Robbins A, Kohler B, Jemal A. Childhood and adolescent cancer statistics, 2014. CA: a cancer journal for clinicians. 2014;64(2):83-103. 2. American Cancer Society. Cancer Treatment & Survivorship Facts & Figures 2019- 2021. Atlanta, GA: American Cancer Society;2019. 3. Bhatia S, Sather HN, Heerema NA, Trigg ME, Gaynon PS, Robison LL. Racial and ethnic differences in survival of children with acute lymphoblastic leukemia. Blood, The Journal of the American Society of Hematology. 2002;100(6):1957-1964. 4. Kadan-Lottick NS, Ness KK, Bhatia S, Gurney JG. Survival variability by race and ethnicity in childhood acute lymphoblastic leukemia. Jama. 2003;290(15):2008-2014. 5. Pollock BH, DeBaun MR, Camitta BM, et al. Racial differences in the survival of childhood B-precursor acute lymphoblastic leukemia: a Pediatric Oncology Group Study. Journal of Clinical Oncology. 2000;18(4):813-823. 6. Kahn JM, Keegan TH, Tao L, Abrahão R, Bleyer A, Viny AD. Racial disparities in the survival of American children, adolescents, and young adults with acute lymphoblastic leukemia, acute myelogenous leukemia, and Hodgkin lymphoma. Cancer. 2016;122(17):2723-2730. 7. Delavar A, Barnes JM, Wang X, Johnson KJ. Associations Between Race/Ethnicity and US Childhood and Adolescent Cancer Survival by Treatment Amenability. JAMA Pediatrics. 2020;174(5):428-436. 8. Fineberg R, Zahedi S, Eguchi M, Hart M, Cockburn M, Green AL. Population-Based Analysis of Demographic and Socioeconomic Disparities in Pediatric CNS Cancer Survival in the United States. Scientific Reports. 2020;10(1):4588. 9. Kehm RD, Spector LG, Poynter JN, Vock DM, Altekruse SF, Osypuk TL. Does socioeconomic status account for racial and ethnic disparities in childhood cancer survival? Cancer. 2018;124(20):4090-4097. 10. SEER Cancer Statistics. SEER Cancer Statistics Review, 1975–2015. 2015. Accessed November 28, 2018. 11. Siegel RL, Miller KD, Jemal A. Cancer statistics, 2018. CA Cancer J Clin. 2018;68(1):7- 30. 12. Yeh JM, Ward ZJ, Chaudhry A, et al. Life Expectancy of Adult Survivors of Childhood Cancer Over 3 Decades. JAMA oncology. 2020. 13. Hawkins M, Kingston J, Wilson LK. Late deaths after treatment for childhood cancer. Archives of Disease in Childhood. 1990;65(12):1356-1363. 14. Stacy Nicholson H, Fears TR, Byrne J. Death during adulthood in survivors of childhood and adolescent cancer. Cancer. 1994;73(12):3094-3102. 15. Mertens AC, Yasui Y, Neglia JP, et al. Late mortality experience in five-year survivors of childhood and adolescent cancer: the Childhood Cancer Survivor Study. Journal of Clinical Oncology. 2001;19(13):3163-3172. 16. Cardous-Ubbink MC, Heinen RC, Langeveld NE, et al. Long-term cause-specific mortality among five-year survivors of childhood cancer. Pediatr Blood Cancer. 2004;42(7):563-573. 17. Armstrong GT, Liu Q, Yasui Y, et al. Late mortality among 5-year survivors of childhood cancer: a summary from the Childhood Cancer Survivor Study. J Clin Oncol. 2009;27(14):2328-2338. 113 18. Mertens AC, Liu Q, Neglia JP, et al. Cause-specific late mortality among 5-year survivors of childhood cancer: the Childhood Cancer Survivor Study. Journal of the National Cancer Institute. 2008;100(19):1368-1379. 19. Liu Q, Leisenring WM, Ness KK, et al. Racial/Ethnic Differences in Adverse Outcomes Among Childhood Cancer Survivors: The Childhood Cancer Survivor Study. J Clin Oncol. 2016;34(14):1634-1643. 20. Bhatia S, Gibson TM, Ness KK, et al. Childhood cancer survivorship research in minority populations: A position paper from the Childhood Cancer Survivor Study. Cancer. 2016;122(15):2426-2439. 21. Gibson TM, Mostoufi-Moab S, Stratton KL, et al. Temporal patterns in the risk of chronic health conditions in survivors of childhood cancer diagnosed 1970–99: a report from the Childhood Cancer Survivor Study cohort. The Lancet Oncology. 2018;19(12):1590-1601. 22. Phelan R, Eissa H, Becktell K, et al. Upfront Therapies and Downstream Effects: Navigating Late Effects in Childhood Cancer Survivors in the Current Era. Current oncology reports. 2019;21(12):104. 23. Institute of Medicine. Childhood Cancer Survivorship: Improving Care and Quality of Life. Washington, DC: The National Academies Press; 2003. 24. Phillips SM, Padgett LS, Leisenring WM, et al. Survivors of childhood cancer in the United States: prevalence and burden of morbidity. Cancer epidemiology, biomarkers & prevention : a publication of the American Association for Cancer Research, cosponsored by the American Society of Preventive Oncology. 2015;24(4):653-663. 25. PDQ Pediatric Treatment Editorial Board. PDW Late Effects of Treatment for Childhood Cancer In: PDQ Cancer Information Summaries. Bethesda (MD): National Cancer Institute (US); 2002. 26. Zeltzer LK, Recklitis C, Buchbinder D, et al. Psychological status in childhood cancer survivors: a report from the Childhood Cancer Survivor Study. J Clin Oncol. 2009;27(14):2396-2404. 27. Rourke MT, Hobbie WL, Schwartz L, Kazak AE. Posttraumatic stress disorder (PTSD) in young adult survivors of childhood cancer. Pediatr Blood Cancer. 2007;49(2):177- 182. 28. Stuber ML, Meeske KA, Krull KR, et al. Prevalence and predictors of posttraumatic stress disorder in adult survivors of childhood cancer. Pediatrics. 2010;125(5):e1124- 1134. 29. Quinn GP, Gonçalves V, Sehovic I, Bowman ML, Reed DR. Quality of life in adolescent and young adult cancer patients: a systematic review of the literature. Patient Relat Outcome Meas. 2015;6:19-51. 30. Klassen AF, Anthony SJ, Khan A, Sung L, Klaassen R. Identifying determinants of quality of life of children with cancer and childhood cancer survivors: a systematic review. Supportive Care in Cancer. 2011;19(9):1275-1287. 31. Fidler MM, Ziff OJ, Wang S, et al. Aspects of mental health dysfunction among survivors of childhood cancer. British journal of cancer. 2015;113(7):1121-1132. 32. Hudson MM, Mertens AC, Yasui Y, et al. Health status of adult long-term survivors of childhood cancer: a report from the Childhood Cancer Survivor Study. Jama. 2003;290(12):1583-1592. 114 33. Bruce M. A systematic and conceptual review of posttraumatic stress in childhood cancer survivors and their parents. Clinical psychology review. 2006;26(3):233-256. 34. Shah SS, Dellarole A, Peterson EC, et al. Long-term psychiatric outcomes in pediatric brain tumor survivors. Child's nervous system : ChNS : official journal of the International Society for Pediatric Neurosurgery. 2015;31(5):653-663. 35. Geue K, Sender A, Schmidt R, et al. Gender-specific quality of life after cancer in young adulthood: a comparison with the general population. Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation. 2014;23(4):1377-1386. 36. Rueegg CS, Gianinazzi ME, Rischewski J, et al. Health-related quality of life in survivors of childhood cancer: the role of chronic health problems. J Cancer Surviv. 2013;7(4):511- 522. 37. Nathan PC, Greenberg ML, Ness KK, et al. Medical care in long-term survivors of childhood cancer: a report from the childhood cancer survivor study. J Clin Oncol. 2008;26(27):4401-4409. 38. Freyer DR. Transition of care for young adult survivors of childhood and adolescent cancer: rationale and approaches. J Clin Oncol. 2010;28(32):4810-4818. 39. National Cancer Policy Forum BoHCS, A Livestrong and Institute of Medicine Workshop, Institute of Medicine. Identifying and Addressing the Needs of Adolescents and Young Adults with Cancer: Workshop Summary. HEALTH CARE INSURANCE CHALLENGES. https://www.ncbi.nlm.nih.gov/books/NBK179863/. Accessed November 4, 2020. 40. Salsman JM, Danhauer SC, Moore JB, et al. Systematic review of financial burden assessment in cancer: Evaluation of measures and utility among adolescents and young adults and caregivers. Cancer. 2021;127(11):1739-1748. 41. Park ER, Kirchhoff AC, Nipp RD, et al. Assessing Health Insurance Coverage Characteristics and Impact on Health Care Cost, Worry, and Access: A Report From the Childhood Cancer Survivor Study. JAMA internal medicine. 2017;177(12):1855-1858. 42. Mueller EL, Park ER, Davis MM. What the Affordable Care Act Means for Survivors of Pediatric Cancer. Journal of Clinical Oncology. 2014;32(7):615-617. 43. Guy GP, Jr., Berkowitz Z, Ekwueme DU, Rim SH, Yabroff KR. Annual Economic Burden of Productivity Losses Among Adult Survivors of Childhood Cancers. Pediatrics. 2016;138(Suppl 1):S15-s21. 44. Childrens Oncology Group. Long-term follow-up guidelines for survivors of childhood, adolescent, and young adult cancers. Version 5 2018; http://www.survivorshipguidelines.org/. Accessed 08/28/2020. 45. Koch KD, Jones BL. Supporting Parent Caregivers of Children with Life-Limiting Illness. Children (Basel). 2018;5(7):85. 46. Wilford JG, Hopfer S, Wenzel L. Perceptions of changes in clinical, informational, and supportive relationships after end of treatment among parents of young childhood cancer survivors. Psycho-oncology. 2019;28(4):913-919. 47. Decker CL. Social support and adolescent cancer survivors: A review of the literature. Psycho-oncology. 2007;16(1):1-11. 48. Young B, Dixon-Woods M, Heney D. Identity and role in parenting a child with cancer. Pediatric rehabilitation. 2002;5(4):209-214. 115 49. Ritchie MA. Sources of emotional support for adolescents with cancer. Journal of pediatric oncology nursing : official journal of the Association of Pediatric Oncology Nurses. 2001;18(3):105-110. 50. McNeil R, Egsdal M, Drew S, McCarthy MC, Sawyer SM. The changing nature of social support for adolescents and young adults with cancer. European journal of oncology nursing : the official journal of European Oncology Nursing Society. 2019;43:101667. 51. Keats MR, Shea K, Parker L, Stewart SA, Flanders A, Bernstein M. After Childhood Cancer: a Qualitative Study of Family Physician, Parent/Guardian, and Survivor Information Needs and Perspectives on Long-Term Follow-up and Survivorship Care Plans. Journal of cancer education : the official journal of the American Association for Cancer Education. 2019;34(4):638-646. 52. Milam JE, Meeske K, Slaughter RI, et al. Cancer-related follow-up care among Hispanic and non-Hispanic childhood cancer survivors: The Project Forward study. Cancer. 2015;121(4):605-613. 53. Casillas J, Kahn KL, Doose M, et al. Transitioning childhood cancer survivors to adult- centered healthcare: insights from parents, adolescent, and young adult survivors. Psycho-oncology. 2010;19(9):982-990. 54. Frederick NN, Bober SL, Berwick L, Tower M, Kenney LB. Preparing childhood cancer survivors for transition to adult care: The young adult perspective. Pediatric Blood & Cancer. 2017;64(10):e26544. 55. Vetsch J, Rueegg CS, Mader L, et al. Follow-up care of young childhood cancer survivors: attendance and parental involvement. Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer. 2016;24(7):3127- 3138. 56. Young B, Dixon-Woods M, Findlay M, Heney D. Parenting in a crisis: conceptualising mothers of children with cancer. Social science & medicine (1982). 2002;55(10):1835- 1847. 57. Van Dongen-Melman JEWM, Van Zuuren FJ, Verhulst FC. Experiences of parents of childhood cancer survivors: A qualitative analysis. Patient Education and Counseling. 1998;34(3):185-200. 58. Long KA, Marsland AL. Family adjustment to childhood cancer: a systematic review. Clinical child and family psychology review. 2011;14(1):57-88. 59. Klassen A, Raina P, Reineking S, Dix D, Pritchard S, O'Donnell M. Developing a literature base to understand the caregiving experience of parents of children with cancer: a systematic review of factors related to parental health and well-being. Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer. 2007;15(7):807-818. 60. Nicklin E, Velikova G, Hulme C, et al. Long-term issues and supportive care needs of adolescent and young adult childhood brain tumour survivors and their caregivers: A systematic review. Psycho-oncology. 2019;28(3):477-487. 61. Svavarsdottir EK. Caring for a child with cancer: a longitudinal perspective. Journal of advanced nursing. 2005;50(2):153-161. 62. Wittenberg E, Prosser LA. Disutility of Illness for Caregivers and Families: A Systematic Review of the Literature. PharmacoEconomics. 2013;31(6):489-500. 116 63. Klassen AF, Klaassen R, Dix D, et al. Impact of Caring for a Child With Cancer on Parents’ Health-Related Quality of Life. Journal of Clinical Oncology. 2008;26(36):5884-5889. 64. Peikert ML, Inhestern L, Krauth KA, et al. Fear of progression in parents of childhood cancer survivors: A dyadic data analysis. Psycho-oncology. 2020. 65. Eiser C, Eiser JR, Stride CB. Quality of life in children newly diagnosed with cancer and their mothers. Health and Quality of Life Outcomes. 2005;3(1):29. 66. Vrijmoet-Wiersma CM, van Klink JM, Kolk AM, Koopman HM, Ball LM, Maarten Egeler R. Assessment of parental psychological stress in pediatric cancer: a review. J Pediatr Psychol. 2008;33(7):694-706. 67. Gibbins J, Steinhardt K, Beinart H. A systematic review of qualitative studies exploring the experience of parents whose child is diagnosed and treated for cancer. Journal of pediatric oncology nursing : official journal of the Association of Pediatric Oncology Nurses. 2012;29(5):253-271. 68. Grootenhuis MA, Last BF. Adjustment and coping by parents of children with cancer: a review of the literature. Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer. 1997;5(6):466-484. 69. van Warmerdam J, Sutradhar R, Kurdyak P, et al. Long-Term Mental Health Outcomes in Mothers and Siblings of Children With Cancer: A Population-Based, Matched Cohort Study. Journal of Clinical Oncology. 2019;38(1):51-62. 70. Vercasson C, Auquier P, Michel G, et al. Quality of life in parents of childhood leukemia survivors. A French Childhood Cancer Survivor Study for Leukemia study. Pediatr Blood Cancer. 2020;67(10):e28419. 71. Meeske KA, Sherman-Bien S, Hamilton AS, et al. Mental health disparities between Hispanic and non-Hispanic parents of childhood cancer survivors. Pediatr Blood Cancer. 2013;60(9):1470-1477. 72. Midence K. The effects of chronic illness on children and their families: an overview. Genetic, social, and general psychology monographs. 1994;120(3):311-326. 73. Wilson JZ, Marin D, Maxwell K, et al. Association of Posttraumatic Growth and Illness- Related Burden With Psychosocial Factors of Patient, Family, and Provider in Pediatric Cancer Survivors. J Trauma Stress. 2016;29(5):448-456. 74. Fischer CM, Hamilton AS, Slaughter RI, Milam J. A cross-sectional examination of caregiver mental health and childhood cancer survivors' tobacco, alcohol, and marijuana use. Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer. 2020. 75. Slaughter RI, Hamilton AS, Cederbaum JA, Unger JB, Baezconde-Garbanati L, Milam JE. Relationships between parent and adolescent/young adult mental health among Hispanic and non-Hispanic childhood cancer survivors. Journal of Psychosocial Oncology. 2020:1-15. 76. Lavelle TA, Wittenberg E, Lamarand K, Prosser LA. Variation in the spillover effects of illness on parents, spouses, and children of the chronically ill. Applied health economics and health policy. 2014;12(2):117-124. 77. Taghadosi M, Tajamoli Z, Aghajani M. Psychosocial adjustment to cancer and its associated factors in patients undergoing chemotherapy: A cross-sectional study. BIOMEDICAL RESEARCH AND THERAPY. 2017;4(12):1853-1866. 117 78. Wallander JL, Varni JW. Effects of Pediatric Chronic Physical Disorders on Child and Family Adjustment. Journal of Child Psychology and Psychiatry. 1998;39(1):29-46. 79. Coulson NS, Greenwood N. Families affected by childhood cancer: An analysis of the provision of social support within online support groups. Child: Care, Health and Development. 2012;38(6):870-877. 80. Gardner MH, Mrug S, Schwebel DC, Phipps S, Whelan K, Madan-Swain A. Demographic, medical, and psychosocial predictors of benefit finding among caregivers of childhood cancer survivors. Psycho-oncology. 2017;26(1):125-132. 81. Christen S, Mader L, Baenziger J, et al. "I wish someone had once asked me how I'm doing": Disadvantages and support needs faced by parents of long-term childhood cancer survivors. Pediatr Blood Cancer. 2019;66(8):e27767. 82. Lima NNR, do Nascimento VB, de Carvalho SMF, et al. Spirituality in childhood cancer care. Neuropsychiatr Dis Treat. 2013;9:1539-1544. 83. Meireles CB, Maia LC, Miná VAL, et al. Influence of spirituality in pediatric cancer management: A systematic review. International Archives of Medicine. 2015;8. 84. Gage-Bouchard EA, Devine KA, Heckler CE. The relationship between socio- demographic characteristics, family environment, and caregiver coping in families of children with cancer. Journal of clinical psychology in medical settings. 2013;20(4):478- 487. 85. Hensler MA, Katz ER, Wiener L, Berkow R, Madan-Swain A. Benefit finding in fathers of childhood cancer survivors: a retrospective pilot study. Journal of pediatric oncology nursing : official journal of the Association of Pediatric Oncology Nurses. 2013;30(3):161-168. 86. Willard VW, Klosky JL, Li C, et al. The impact of childhood cancer: perceptions of adult survivors. Cancer. 2017;123(9):1625-1634. 87. Blazin LJ, Cecchini C, Habashy C, Kaye EC, Baker JN. Communicating Effectively in Pediatric Cancer Care: Translating Evidence into Practice. Children (Basel). 2018;5(3):40. 88. Sisk BA, Mack JW, Ashworth R, DuBois J. Communication in pediatric oncology: State of the field and research agenda. Pediatr Blood Cancer. 2018;65(1). 89. Essig S, Steiner C, Kuehni CE, Weber H, Kiss A. Improving Communication in Adolescent Cancer Care: A Multiperspective Study. Pediatr Blood Cancer. 2016;63(8):1423-1430. 90. Otth M, Denzler S, Koenig C, Koehler H, Scheinemann K. Transition from pediatric to adult follow-up care in childhood cancer survivors—a systematic review. Journal of Cancer Survivorship. 2020. 91. Hewitt M, Greenfield S, Stovall E. From Cancer Patient to Cancer Survivor: Lost in Transition. Washington, DC2005. 92. Psihogios AM, Schwartz LA, Deatrick JA, et al. Preferences for cancer survivorship care among adolescents and young adults who experienced healthcare transitions and their parents. J Cancer Surviv. 2019;13(4):620-631. 93. Ranson KE, Urichuk LJ. The effect of parent–child attachment relationships on child biopsychosocial outcomes: a review. Early Child Development and Care. 2008;178(2):129-152. 118 94. Brauer K, Proyer RT. Dyadic Processes. In: Shackelford TK, Weekes-Shackelford VA, eds. Encyclopedia of Evolutionary Psychological Science. Cham: Springer International Publishing; 2019:1-8. 95. Gutiérrez-Colina AM, Lee JL, VanDellen M, Mertens A, Marchak JG. Family Functioning and Depressive Symptoms in Adolescent and Young Adult Cancer Survivors and Their Families: A Dyadic Analytic Approach. J Pediatr Psychol. 2017;42(1):19-27. 96. Wolff JC, Thomas SA, Hood E, Bettis AH, Rizzo CJ, Liu RT. Application of the actor- partner interdependence model in parent-adolescent emotion regulation and depression. Journal of affective disorders. 2020;277:733-741. 97. Juth V, Silver RC, Sender L. The shared experience of adolescent and young adult cancer patients and their caregivers. Psycho‐Oncology. 2015;24(12):1746-1753. 98. Streck BP, Wardell DW, LoBiondo‐Wood G, Beauchamp JE. Interdependence of physical and psychological morbidity among patients with cancer and family caregivers: Review of the literature. Psycho‐Oncology. 2020. 99. Rajaei A, Jensen JF, Brimhall AS, Torres ET, Schwartz AJ. Dyadic Function of Couples with Cancer: A Review. Journal of Couple & Relationship Therapy. 2020:1-24. 100. Lin B, Gutman T, Hanson CS, et al. Communication during childhood cancer: Systematic review of patient perspectives. Cancer. 2020;126(4):701-716. 101. Zabih V, Kahane A, O’Neill NE, Ivers N, Nathan PC. Interventions to improve adherence to surveillance guidelines in survivors of childhood cancer: a systematic review. Journal of Cancer Survivorship. 2019:1-17. 102. Signorelli C, Wakefield CE, Fardell JE, et al. The impact of long-term follow-up care for childhood cancer survivors: A systematic review. Critical Reviews in Oncology/Hematology. 2017;114:131-138. 103. Cherven B, Mertens A, Meacham LR, Williamson R, Boring C, Wasilewski-Masker K. Knowledge and risk perception of late effects among childhood cancer survivors and parents before and after visiting a childhood cancer survivor clinic. Journal of pediatric oncology nursing : official journal of the Association of Pediatric Oncology Nurses. 2014;31(6):339-349. 104. Signorelli C, Wakefield CE, Fardell JE, et al. The impact of long-term follow-up care for childhood cancer survivors: A systematic review. Crit Rev Oncol Hematol. 2017;114:131-138. 105. Greenzang KA, Cronin AM, Mack JW. Parental preparedness for late effects and long- term quality of life in survivors of childhood cancer. Cancer. 2016;122(16):2587-2594. 106. Kaye E, Mack JW. Parent perceptions of the quality of information received about a child's cancer. Pediatr Blood Cancer. 2013;60(11):1896-1901. 107. Barakat LP, Schwartz LA, Szabo MM, Hussey HM, Bunin GR. Factors that contribute to post-treatment follow-up care for survivors of childhood cancer. J Cancer Surviv. 2012;6(2):155-162. 108. Oeffinger KC, Mertens AC, Hudson MM, et al. Health care of young adult survivors of childhood cancer: a report from the Childhood Cancer Survivor Study. Annals of family medicine. 2004;2(1):61-70. 109. Castellino SM, Casillas J, Hudson MM, et al. Minority adult survivors of childhood cancer: a comparison of long-term outcomes, health care utilization, and health-related behaviors from the childhood cancer survivor study. J Clin Oncol. 2005;23(27):6499- 6507. 119 110. Goenka PK. Lost in translation: impact of language barriers on children's healthcare. Current Opinion in Pediatrics. 2016;28(5). 111. Zamora ER, Kaul S, Kirchhoff AC, et al. The impact of language barriers and immigration status on the care experience for Spanish-speaking caregivers of patients with pediatric cancer. Pediatr Blood Cancer. 2016;63(12):2173-2180. 112. Lyons KS, Lee CS. The Theory of Dyadic Illness Management. Journal of Family Nursing. 2018;24(1):8-28. 113. Lazarus RS, Folkman S. Stress, appraisal, and coping. Springer publishing company; 1984. 114. Landier W, Hughes CB, Calvillo ER, et al. A grounded theory of the process of adherence to oral chemotherapy in Hispanic and caucasian children and adolescents with acute lymphoblastic leukemia. Journal of pediatric oncology nursing : official journal of the Association of Pediatric Oncology Nurses. 2011;28(4):203-223. 115. Janin MMH, Ellis SJ, Wakefield CE, Fardell JE. Talking About Cancer Among Adolescent and Young Adult Cancer Patients and Survivors: A Systematic Review. Journal of Adolescent and Young Adult Oncology. 2018;7(5):515-524. 116. Weaver MS, Baker JN, Gattuso JS, Gibson DV, Hinds PS. “Being a good patient” during times of illness as defined by adolescent patients with cancer. Cancer. 2016;122(14):2224-2233. 117. Smith LA, Critoph DJ, Hatcher HM. How Can Health Care Professionals Communicate Effectively with Adolescent and Young Adults Who Have Completed Cancer Treatment? A Systematic Review. Journal of Adolescent and Young Adult Oncology. 2020. 118. Miller KA, Ramirez CN, Wojcik KY, et al. Prevalence and correlates of health information-seeking among Hispanic and non-Hispanic childhood cancer survivors. Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer. 2018;26(4):1305-1313. 119. Ochoa CY, Miller KA, Baezconde-Garbanati L, Slaughter RI, Hamilton AS, Milam JE. Parental Cancer-related Information Seeking, Health Communication and Satisfaction with Medical Providers of Childhood Cancer Survivors: Differences by Race/Ethnicity and Language Preference. Journal of Health Communication. 2021:1-9. 120. Yanez B, McGinty HL, Buitrago D, Ramirez AG, Penedo FJ. Cancer outcomes in Hispanics/Latinos in the United States: An integrative review and conceptual model of determinants of health. Journal of Latina/o psychology. 2016;4(2):114. 121. Schwartz SJ, Unger JB, Zamboanga BL, Szapocznik J. Rethinking the concept of acculturation: implications for theory and research. The American psychologist. 2010;65(4):237-251. 122. Tobin JL. Multilevel Sociodemographic Correlates of the Health and Healthcare Utilization of Childhood Cancer Survivors, University of Southern California; 2020. 123. Vetsch J, Rueegg CS, Gianinazzi ME, Bergsträsser E, von der Weid NX, Michel G. Information needs in parents of long-term childhood cancer survivors. Pediatr Blood Cancer. 2015;62(5):859-866. 124. Vetsch J, Fardell JE, Wakefield CE, et al. "Forewarned and forearmed": Long-term childhood cancer survivors' and parents' information needs and implications for survivorship models of care. Patient Educ Couns. 2017;100(2):355-363. 120 125. Sadak KT, Gemeda M, Grafelman MC, et al. Identifying metrics of success for transitional care practices in childhood cancer survivorship: A qualitative interview study of parents. Cancer Medicine. 2021;10(18):6239-6248. 126. Muthén B, Muthén LK. Integrating person‐centered and variable‐centered analyses: Growth mixture modeling with latent trajectory classes. Alcoholism: Clinical and experimental research. 2000;24(6):882-891. 127. Milam J, Freyer DR, Miller KA, et al. Project Forward: A Population-Based Cohort Among Young Adult Survivors of Childhood Cancers. JNCI Cancer Spectrum. 2021. 128. Werba BE, Hobbie W, Kazak AE, Ittenbach RF, Reilly AF, Meadows AT. Classifying the intensity of pediatric cancer treatment protocols: The intensity of treatment rating scale 2.0 (ITR‐2). Pediatric blood & cancer. 2007;48(7):673-677. 129. Landier W, Bhatia S, Eshelman DA, et al. Development of risk-based guidelines for pediatric cancer survivors: the Children's Oncology Group Long-Term Follow-Up Guidelines from the Children's Oncology Group Late Effects Committee and Nursing Discipline. J Clin Oncol. 2004;22(24):4979-4990. 130. Nathan PC, Ford JS, Henderson TO, et al. Health behaviors, medical care, and interventions to promote healthy living in the Childhood Cancer Survivor Study cohort. J Clin Oncol. 2009;27(14):2363-2373. 131. Institute S. Base SAS 9.4 procedures guide. SAS Institute; 2015. 132. Muthén L, Muthén B. Mplus user’s guide. Eighth. Muthen & Muthen. 2017. 133. Nylund-Gibson K, Choi AY. Ten frequently asked questions about latent class analysis. Translational Issues in Psychological Science. 2018;4(4):440. 134. Masyn KE. Measurement invariance and differential item functioning in latent class analysis with stepwise multiple indicator multiple cause modeling. Structural Equation Modeling: A Multidisciplinary Journal. 2017;24(2):180-197. 135. Nylund-Gibson K, Grimm RP, Masyn KE. Prediction from latent classes: A demonstration of different approaches to include distal outcomes in mixture models. Structural Equation Modeling: A Multidisciplinary Journal. 2019;26(6):967-985. 136. Muthén B. Statistical and substantive checking in growth mixture modeling: comment on Bauer and Curran (2003). 2003. 137. Nylund KL, Asparouhov T, Muthén BO. Deciding on the number of classes in latent class analysis and growth mixture modeling: A Monte Carlo simulation study. Structural equation modeling: A multidisciplinary Journal. 2007;14(4):535-569. 138. Moore W. Applied Latent Class Analysis & Finite Mixture Modeling Seminar. In: Stats Camp; 2020. 139. Collins LM, Lanza ST. Latent class analysis with covariates. Latent class and latent transition analysis: With applications in the social, behavioral, and health sciences. 2010;149. 140. Masyn KE. Chapter 25: Latent Class Analysis and Finite Mixture Modeling. The Oxford handbook of quantitative methods. 2013:551. 141. Henderson TO, Friedman DL, Meadows AT. Childhood cancer survivors: transition to adult-focused risk-based care. Pediatrics. 2010;126(1):129-136. 142. Henrikson NB, Shankaran V. Improving price transparency in cancer care. J Oncol Pract. 2016;12(1):44-47. 121 143. Banegas MP, Dickerson JF, Kent EE, et al. Exploring barriers to the receipt of necessary medical care among cancer survivors under age 65 years. J Cancer Surviv. 2018;12(1):28-37. 144. Henrikson NB, Chang E, Ulrich K, King D, Anderson ML. Communication with Physicians about Health Care Costs: Survey of an Insured Population. Perm J. 2017;21. 145. Murphy LK, Rodriguez EM, Schwartz L, et al. Longitudinal associations among maternal communication and adolescent posttraumatic stress symptoms after cancer diagnosis. Psycho-oncology. 2016;25(7):779-786. 146. Ashing-Giwa KT, Padilla GV, Bohórquez DE, Tejero JS, Garcia M. Understanding the breast cancer experience of Latina women. J Psychosoc Oncol. 2006;24(3):19-52. 147. Lopez-Class M, Gomez-Duarte J, Graves K, Ashing-Giwa K. A contextual approach to understanding breast cancer survivorship among Latinas. Psycho-oncology. 2012;21(2):115-124. 148. Brinkman TM, Zhu L, Zeltzer LK, et al. Longitudinal patterns of psychological distress in adult survivors of childhood cancer. Br J Cancer. 2013;109(5):1373-1381. 149. Brinkman TM, Liptak CC, Delaney BL, Chordas CA, Muriel AC, Manley PE. Suicide ideation in pediatric and adult survivors of childhood brain tumors. Journal of neuro- oncology. 2013;113(3):425-432. 150. Brinkman TM, Ullrich NJ, Zhang N, et al. Prevalence and predictors of prescription psychoactive medication use in adult survivors of childhood cancer: a report from the Childhood Cancer Survivor Study. J Cancer Surviv. 2013;7(1):104-114. 151. Cohen S, Kamarck T, Mermelstein R. A global measure of perceived stress. Journal of health and social behavior. 1983:385-396. 152. Kazak AE, Barakat LP. Brief report: Parenting stress and quality of life during treatment for childhood leukemia predicts child and parent adjustment after treatment ends. Journal of pediatric Psychology. 1997;22(5):749-758. 153. Ochoa CY, Lunsford NB, Smith JL. Impact of informal cancer caregiving across the cancer experience: A systematic literature review of quality of life. Palliative & Supportive Care. 2020;18(2):220-240. 154. Virtue SM, Manne SL, Mee L, et al. Psychological distress and psychiatric diagnoses among primary caregivers of children undergoing hematopoietic stem cell transplant: an examination of prevalence, correlates, and racial/ethnic differences. General hospital psychiatry. 2014;36(6):620-626. 155. Buchbinder DK, Fortier MA, Osann K, et al. Quality of Life Among Parents of Adolescent and Young Adult Brain Tumor Survivors. Journal of pediatric hematology/oncology. 2017;39(8):579-584. 156. Bakula DM, Sharkey CM, Perez MN, et al. Featured Article: The Relationship Between Parent and Child Distress in Pediatric Cancer: A Meta-Analysis. J Pediatr Psychol. 2019;44(10):1121-1136. 157. Bakula DM, Sharkey CM, Perez MN, et al. The Relationship Between Parent Distress and Child Quality of Life in Pediatric Cancer: A Meta-Analysis. Journal of pediatric nursing. 2020;50:14-19. 158. Kenny DA. Models of non-independence in dyadic research. Journal of Social and Personal Relationships. 1996;13(2):279-294. 159. Kenny DA, Cook W. Partner effects in relationship research: Conceptual issues, analytic difficulties, and illustrations. Personal relationships. 1999;6(4):433-448. 122 160. Kashy DA, Donnellan MB. Conceptual and methodological issues in the analysis of data from dyads and groups. The Oxford handbook of personality and social psychology. 2012:209-238. 161. Hamilton AS, Zhuang X, Modjeski D, Slaughter R, Ritt-Olson A, Milam J. Population- Based Survey Methods for Reaching Adolescent and Young Adult Survivors of Pediatric Cancer and Their Parents. J Adolesc Young Adult Oncol. 2018. 162. Blake RL, Jr., McKay DA. A single-item measure of social supports as a predictor of morbidity. The Journal of family practice. 1986;22(1):82-84. 163. Radloff LS. The CES-D scale: A self-report depression scale for research in the general population. Applied psychological measurement. 1977;1(3):385-401. 164. Cohen J. Statistical power analysis for the behavior science: Lawrance Eribaum association. In: Cambridge: Academic Press Books-Elsevier; 1988. 165. Kenny DA, Kashy DA, Cook WL. Dyadic data analysis. Guilford press; 2006. 166. APIMPowerR: An interactive tool for Actor-Partner Interdependence Model power analysis [computer program]. Available from https://robert-a- ackerman.shinyapps.io/APIMPower/2016. 167. Kline RB. Principles and practice of structural equation modeling. Guilford publications; 2015. 168. Reed RG, Butler EA, Kenny DA. Dyadic Models for the Study of Health. Social and Personality Psychology Compass. 2013;7(4):228-245. 169. Kelley DE, Kent EE, Litzelman K, Mollica MA, Rowland JH. Dyadic associations between perceived social support and cancer patient and caregiver health: An actor- partner interdependence modeling approach. Psycho-oncology. 2019;28(7):1453-1460. 170. Bodschwinna D, Ernst J, Mehnert-Theuerkauf A, Gündel H, Weissflog G, Hönig K. Dyadic coping and social support: Various types of support in hematooncological patients and their spouses-Associations with psychological distress. Psycho-oncology. 2021. 171. Varner S, Lloyd G, Ranby KW, Callan S, Robertson C, Lipkus IM. Illness uncertainty, partner support, and quality of life: A dyadic longitudinal investigation of couples facing prostate cancer. Psycho-oncology. 2019;28(11):2188-2194. 172. Kim Y, Carver CS, Spillers RL, Crammer C, Zhou ES. Individual and dyadic relations between spiritual well-being and quality of life among cancer survivors and their spousal caregivers. Psycho-oncology. 2011;20(7):762-770. 173. Cho D, Kim S, Durrani S, Liao Z, Milbury K. Associations Between Spirituality, Mindfulness, and Psychological Symptoms Among Advanced Lung Cancer Patients and Their Spousal Caregivers. Journal of pain and symptom management. 2021;61(5):898- 908.e891. 174. Gesselman AN, Bigatti SM, Garcia JR, Coe K, Cella D, Champion VL. Spirituality, emotional distress, and post-traumatic growth in breast cancer survivors and their partners: an actor-partner interdependence modeling approach. Psycho-oncology. 2017;26(10):1691-1699. 175. Huang L-T, Tai C-Y, Longcoy J, McMillan SC. The Mutual Effects of Perceived Spiritual Needs on Quality of Life in Patients With Advanced Cancer and Family Caregivers. Journal of Hospice & Palliative Nursing. 2021;23(4). 176. Erdmann F, Feychting M, Mogensen H, Schmiegelow K, Zeeb H. Social Inequalities Along the Childhood Cancer Continuum: An Overview of Evidence and a Conceptual 123 Framework to Identify Underlying Mechanisms and Pathways. Front Public Health. 2019;7:84-84. 177. Tsimicalis A, Stevens B, Ungar WJ, McKeever P, Greenberg M. The cost of childhood cancer from the family's perspective: A critical review. Pediatric Blood & Cancer. 2011;56(5):707-717. 178. Mader L, Roser K, Baenziger J, et al. Household income and risk-of-poverty of parents of long-term childhood cancer survivors. Pediatr Blood Cancer. 2017;64(8). 179. Kelada L, Wakefield CE, Vetsch J, et al. Financial toxicity of childhood cancer and changes to parents' employment after treatment completion. Pediatr Blood Cancer. 2020;67(7):e28345. 180. Frederiksen LE, Mader L, Feychting M, et al. Surviving childhood cancer: a systematic review of studies on risk and determinants of adverse socioeconomic outcomes. International Journal of Cancer. 2019;144(8):1796-1823. 181. Conway Keller M, King C, Hart L, et al. The end of cancer treatment experience for children, adolescents, and their parents: A systematic review of the literature. Journal of Psychosocial Oncology. 2020;38(5):573-591. 182. Beltrami A, Hilliard A, Green AL. Demographic and socioeconomic disparities in pediatric cancer in the United States: Current knowledge, deepening understanding, and expanding intervention. Cancer epidemiology. 2021;76:102082. 183. Reeves TJ, Mathis TJ, Bauer HE, et al. Racial and Ethnic Disparities in Health Outcomes Among Long-Term Survivors of Childhood Cancer: A Scoping Review. Front Public Health. 2021;9. 184. Moreno PI, Ramirez AG, San Miguel-Majors SL, et al. Unmet supportive care needs in Hispanic/Latino cancer survivors: prevalence and associations with patient-provider communication, satisfaction with cancer care, and symptom burden. Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer. 2019;27(4):1383-1394. 185. Lockhart JS, Oberleitner MG, Nolfi DA. The Hispanic/Latino Immigrant Cancer Survivor Experience in the United States: A Scoping Review. Annual review of nursing research. 2018;37(1):119-160. 186. Agency for Healthcare Research and Quality. Module 2. Working With Safety Net Practices. https://www.ahrq.gov/ncepcr/tools/pf-handbook/mod2.html. Accessed January 6, 2021. 187. Braun V, Clarke V. To saturate or not to saturate? Questioning data saturation as a useful concept for thematic analysis and sample-size rationales. Qualitative Research in Sport, Exercise and Health. 2019:1-16. 188. Braun V, Clarke V, Weate P. Using thematic analysis in sport and exercise research. Routledge handbook of qualitative research in sport and exercise. 2016:191-205. 189. Braun V, Clarke V. Using thematic analysis in psychology. Qualitative research in psychology. 2006;3(2):77-101. 190. Charmaz K. The power and potential of grounded theory. Medical sociology online. 2012;6(3):2-15. 191. Tong A, Sainsbury P, Craig J. Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. International journal for quality in health care. 2007;19(6):349-357. 124 192. Bona K, Dussel V, Orellana L, et al. Economic impact of advanced pediatric cancer on families. Journal of pain and symptom management. 2014;47(3):594-603. 193. Santacroce SJ, Kneipp SM. Influence of pediatric cancer-related financial burden on parent distress and other stress-related symptoms. Pediatr Blood Cancer. 2020;67(3):e28093. 194. Kronenfeld JP, Graves KD, Penedo FJ, Yanez B. Overcoming Disparities in Cancer: A Need for Meaningful Reform for Hispanic and Latino Cancer Survivors. The oncologist. 2021;26(6):443-452. 195. Morales LS, Lara M, Kington RS, Valdez RO, Escarce JJ. Socioeconomic, cultural, and behavioral factors affecting Hispanic health outcomes. J Health Care Poor Underserved. 2002;13(4):477-503. 196. Escarce JJ, Kapur K. Access to and quality of health care. Hispanics and the Future of America. 2006:410-446. 197. Sisk BA, Kang TI, Mack JW. Racial and Ethnic Differences in Parental Decision-Making Roles in Pediatric Oncology. Journal of palliative medicine. 2020;23(2):192-197. 198. Wells KJ, Battaglia TA, Dudley DJ, et al. Patient navigation: state of the art or is it science? Cancer. 2008;113(8):1999-2010. 199. Badger TA, Sikorskii A, Segrin C. Contextual and cultural influences on caregivers of Hispanic cancer survivors. Paper presented at: Seminars in oncology nursing2019. 200. Desai PP, Rivera AT, Backes EM. Latino Caregiver Coping With Children's Chronic Health Conditions: An Integrative Literature Review. Journal of Pediatric Health Care. 2016;30(2):108-120. 201. Holt CL, Clark EM, Roth DL. Positive and Negative Religious Beliefs Explaining the Religion-Health Connection Among African Americans. The International journal for the psychology of religion. 2014;24(4):311-331. 202. Pargament KI, Koenig HG, Tarakeshwar N, Hahn J. Religious Struggle as a Predictor of Mortality Among Medically Ill Elderly Patients: A 2-Year Longitudinal Study. Archives of Internal Medicine. 2001;161(15):1881-1885. 203. Katiria Perez G, Cruess D. The impact of familism on physical and mental health among Hispanics in the United States. Health Psychol Rev. 2014;8(1):95-127. 204. Moadel AB, Morgan C, Dutcher J. Psychosocial needs assessment among an underserved, ethnically diverse cancer patient population. Cancer: Interdisciplinary International Journal of the American Cancer Society. 2007;109(S2):446-454. 205. Drabble L, Trocki KF, Salcedo B, Walker PC, Korcha RA. Conducting qualitative interviews by telephone: Lessons learned from a study of alcohol use among sexual minority and heterosexual women. Qualitative Social Work. 2016;15(1):118-133. 206. Badr H, Krebs P. A systematic review and meta-analysis of psychosocial interventions for couples coping with cancer. Psycho-oncology. 2013;22(8):1688-1704. 207. Hu Y, Liu T, Li F. Association between dyadic interventions and outcomes in cancer patients: a meta-analysis. Supportive Care in Cancer. 2019;27(3):745-761. 208. Ryan D, Chafe R, Hodgkinson K, Chan K, Stringer K, Moorehead P. Interventions to improve the aftercare of survivors of childhood cancer: A systematic review. Pediatric Hematology Oncology Journal. 2018;3(4):90-98. 209. Badr H, Bakhshaie J, Chhabria K. Dyadic Interventions for Cancer Survivors and Caregivers: State of the Science and New Directions. Semin Oncol Nurs. 2019;35(4):337- 341. 125 210. Alfano CM, Leach CR, Smith TG, et al. Equitably improving outcomes for cancer survivors and supporting caregivers: a blueprint for care delivery, research, education, and policy. CA: a cancer journal for clinicians. 2019;69(1):35-49. 211. California Caregiver Resouce Centers. Updates to the Paid Family Leave Act in CA – 2021. https://www.caregivercalifornia.org/2021/01/02/updates-to-the-paid-family-leave- act-in-ca-2021/. Accessed January 28, 2022. 212. Pollack Porter KM, Rutkow L, McGinty EE. The importance of policy change for addressing public health problems. Public Health Reports. 2018;133(1_suppl):9S-14S. 213. Raphael K. Recall bias: a proposal for assessment and control. International journal of epidemiology. 1987;16(2):167-170. 214. Graeff TR. Response Bias. In: Kempf-Leonard K, ed. Encyclopedia of Social Measurement. New York: Elsevier; 2005:411-418. 215. Healthy People 2030. Social Determinants of Health. https://health.gov/healthypeople/objectives-and-data/social-determinants-health. Accessed 03/11/2021. 216. Velasco-Mondragon E, Jimenez A, Palladino-Davis AG, Davis D, Escamilla-Cejudo JA. Hispanic health in the USA: a scoping review of the literature. Public Health Rev. 2016;37:31-31. 126 APPENDIX 1: Caregiver Flyer in English and Spanish 127 APPENDIX 2: INFORMATION SHEET FOR EXEMPT RESEARCH STUDY TITLE: Hispanic caregivers of Childhood Cancer Survivors: A Qualitative Study PRINCIPAL INVESTIGATOR: Carol Ochoa, MPH You are invited to participate in a research study. Your participation is voluntary. This document explains information about this study. You should ask questions about anything that is unclear to you. PURPOSE The purpose of this study is to understand the lived experiences of Hispanic caregivers of pediatric cancer patients and to assess the caregivers’ perspective of their child’s adjustment after treatment. Ultimately, we want to improve caregiver’s and child’s adjustment after treatment by identifying facilitators and challenges that are unique to Hispanic caregivers and pediatric cancer patients. You are invited as a possible participant because your child attends the LAC+USC pediatric survivorship clinic and have been identified as Hispanic. PARTICIPANT INVOLVEMENT If you agree to take part in this study, you will complete an interview that will take about 30 to 45 minutes. The interview will talk about your experience as caregiver of a pediatric cancer patients. You do not have to talk about anything that makes you feel uncomfortable. You can ask to stop the interview at any time. There are no right or wrong answers to the questions. We just want to know your opinions. If you have any questions, need to take a break, or do not understand a question, we can stop at any time and help you. This interview will be audio recorded to make sure we have an accurate record of your answers. PAYMENT/COMPENSATION FOR PARTICIPATION There is no cost to participate in this study. You will receive a $25 gift card for your time at the conclusion of this meeting. CONFIDENTIALITY The members of the research team, and the University of Southern California Institutional Review Board (IRB) may access the data. The IRB reviews and monitors research studies to protect the rights and welfare of research subjects. Everything you say during this interview is confidential. We will not share it with anyone outside of the research team. To protect your privacy, study staff will assign you an identification (ID) number. Only your ID number will be used to keep track of what you say during the interview (in audio recording) and on the survey. The link between your name and the ID number will be kept in a safe, password protected computer file. After 128 5 years, study staff will destroy all materials that have your name or other information that can identify you. INVESTIGATOR CONTACT INFORMATION If you have any questions about this study, please contact Carol Ochoa, MPH at 323-559-3979 or by email at caroloch@usc.edu. IRB CONTACT INFORMATION If you have any questions about your rights as a research participant, please contact the University of Southern California Institutional Review Board at (323) 442-0114 or email irb@usc.edu. 129 APPENDIX 3: Qualitative instrument 1. Can you share a bit about your experience as the primary caregiver of your child? a. Can you tell me about some of the challenges you have encountered providing care and support for your child as a result of his/her condition? b. Could you tell me about some of the positive things you have encountered providing care and support for your child as a result of his/her condition? c. What are some things that make it easier for you to take care of your child’s health? d. What are some things that make it harder for you to take care of your child’s health? 2. How have you been feeling since your child finished his/her cancer treatment? a. Can you describe how you think your mental health or well-being has been affected by your child’s cancer experience? b. Are there other key sources of stress in your life that affect your ability to care for your child? If so, can you describe how this has impacted your caregiving? c. Have there been any changes to how you are feeling due to the current coronavirus pandemic? 3. Could you tell me how you think the cancer diagnosis and treatment have affected your child? a. Have you noticed any changes in your child’s behavior since treatment? b. Have you noticed any changes given the current situation with the coronavirus pandemic? 4. How openly is your child’s cancer diagnosis and treatment discussed between you and your child? What about in your household? And with doctors? a. Can you tell me about what type of cancer-related things you have talked about with your child, family, or doctors? b. Was there ever a time during your child’s cancer treatment that you felt that you were unable to understand your child’s medical provider? c. What about discussing any health issues about your child? 5. Can you please tell me a bit more about what it has been like for you to take care of your child during this current situation? a. What are your current main challenges as a result of the coronavirus pandemic? 6. We have talked about a lot of things today; is there anything else you would like to add? 130 APPENDIX 4: Socio-demographic survey Section 1. Cancer survivors 1) How old is your child now? _____________ How old was your child when he/she was diagnosed? _____________ 2) What is your relationship to the patient? __________________ 3) What was the name of the cancer or tumor your child was diagnosed with?  Any type of Leukemia (sometimes called ALL, AML, CLL, or CML)  Brain (or Central Nervous System)  Hodgkin’s Lymphoma  NHL (non-Hodgkin’s Lymphoma)  Bone tumor  Neuroblastoma  Other type: ________________________  Not sure of the type 4) Did your child’s cancer treatment include chemotherapy?  Yes  No  Not sure 5) Did your child’s cancer treatment include radiation therapy?  Yes  No  Not sure 6) Did your child’s cancer treatment include surgery?  Yes  No  Not sure 7) About how long ago did your child finish his/her cancer treatment (of any type)?  Less than 1 year ago  1-2 years ago  More than 2 years ago  Don’t know 8) Does your child have any health problems as a result of his/her cancer and/or its treatment?  Yes  No  Not sure 131 IF YES: 7a) Please list problems/complications: ____________________________________ Section 2. Caregiver 1) What is your date of birth (dd/mm/yyyy)? __________________ 2) In what country were you born?  United States  Other (please specify) __________________ 3) How many years have you lived in this country? _____________ years 4) What is your gender?  Female  Male  Non-Binary  Prefer to self-describe: _____________  Prefer not to say 5) Which best describes your current marital status?  Single  Married  Living with a partner as married  Widowed  Divorced  Separated or no longer living as married 6) What is your household composition (including yourself)? __________________ 7) Which category best describes the highest level of formal education you have completed?  Grade school (1-8 years)  Some high school (less than 12 years)  High school graduate or GED (12 years)  Some college, vocational or training school  Associate Degree (A.D. or A.A. degree)  College graduate (B.A. or B.S. degree)  Postgraduate education 8) How would you describe your employment status? (Check all that apply)  Working full-time  Working part-time  Stay-at-home parent  Student 132  Unemployed  Other: _________________________________ 9) Which of the following income groups represent your total family income for the past 12 months?  Less than $10,000  $10,000-19,999  $20,000 to less than $29,999  $30,000 to less than $39,999  $40,000 to less than $49,999  $50,000 to less than $59,999  $60,000 or more  Decline to state 10) What type of health insurance or health care coverage do you currently have?  None  Public (Such as Medicaid)  Private health insurance or HMO (such as Blue Cross or Kaiser)  Other: _______________________  Don’t know

Abstract (if available)

Linked assets

University of Southern California Dissertations and Theses

Conceptually similar

PDF

Childhood cancer survivorship: parental factors associated with survivor's follow-up care behavior and mental health

PDF

Multilevel influences of care engagement and long-term survival among childhood, adolescent, and young adult cancer survivors

PDF

Multilevel sociodemographic correlates of the health and healthcare utilization of childhood cancer survivors

PDF

Exploring geography and multi-level factors associated with disparities in HPV vaccination among Latino adolescents in Los Angeles County

PDF

Psychosocial and cultural factors in the primary prevention of melanoma targeted to multiethnic children

PDF

Sociocultural stress, coping and substance use among Hispanic/Latino adolescents

PDF

Factors associated with agreement between childhood cancer survivors (CCS) and their parents on knowledge and attitudes about health-related quality of life, treatment and follow-up care

PDF

The effect of an educational fotonovela on the prevention of secondhand smoke

PDF

The role of social support in the relationship between adverse childhood experiences and addictive behaviors across adolescence and young adulthood

PDF

An exploratory study of the role of religion and religious involvement among Latinos with schizophrenia and family caregivers

PDF

Transfusional iron, anthracyclines and cardiac outcomes in childhood cancer survivors

PDF

Exploring the role of peer influence, linguistic acculturation, and social networks in substance use

PDF

A sociocultural and developmental approach to intimate partner violence among a sample of Hispanic emerging adults

PDF

Energy drink consumption, substance use and attention-deficit/hyperactivity disorder among adolescents

PDF

Genetic and environmental risk factors for childhood cancer

PDF

Applications of mindfulness toward promoting psychosocial health in diverse communities

PDF

Cultural risk and protective factors for tobacco use behaviors and depressive symptoms among American Indian adolescents in California

PDF

Investigating racial and ethnic disparities in patient experiences with care and health services use following colorectal cancer diagnosis among older adults with comorbid chronic conditions

PDF

An examination of the association between spousal support and type 2 diabetes self-management

PDF

Factors and correlates of sexual behaviors among young adults from continuation high schools

Asset Metadata

Creator Ochoa, Carol Yesenia (author)

Core Title The role of dyadic and triadic factors on psychosocial wellbeing and healthcare interactions among childhood cancer survivors, parents, and medical providers

School Keck School of Medicine

Degree Doctor of Philosophy

Degree Program Preventive Medicine (Health Behavior)

Degree Conferral Date 2022-05

Publication Date 04/03/2024

Defense Date 02/23/2022

Publisher University of Southern California (original), University of Southern California. Libraries (digital)

Tag caregivers,childhood cancer,Hispanic/Latino,OAI-PMH Harvest,survivorship

Format application/pdf (imt)

Language English

Contributor Electronically uploaded by the author (provenance)

Advisor Baezconde-Garbanati, Lourdes (committee chair), Chan, Randall (committee member), Cho, Junhan (committee member), Farias, Albert (committee member), Milam, Joel (committee member), Miller, Kimberly (committee member)

Creator Email carol.y.ochoa@gmail.com,caroloch@usc.edu

Permanent Link (DOI) https://doi.org/10.25549/usctheses-oUC110879204

Unique identifier UC110879204

Document Type Dissertation

Format application/pdf (imt)

Rights Ochoa, Carol Yesenia

Type texts

Source 20220406-usctheses-batch-919 (batch), University of Southern California (contributing entity), University of Southern California Dissertations and Theses (collection)

Access Conditions The author retains rights to his/her dissertation, thesis or other graduate work according to U.S. copyright law. Electronic access is being provided by the USC Libraries in agreement with the author, as the original true and official version of the work, but does not grant the reader permission to use the work if the desired use is covered by copyright. It is the author, as rights holder, who must provide use permission if such use is covered by copyright. The original signature page accompanying the original submission of the work to the USC Libraries is retained by the USC Libraries and a copy of it may be obtained by authorized requesters contacting the repository e-mail address given.

Repository Name University of Southern California Digital Library

Repository Location USC Digital Library, University of Southern California, University Park Campus MC 2810, 3434 South Grand Avenue, 2nd Floor, Los Angeles, California 90089-2810, USA

Repository Email cisadmin@lib.usc.edu