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Si se puede in the modern era: Latino children beating the odds of underrepresentation in cancer clinical trials

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Si se puede in the modern era: Latino children beating the odds of underrepresentation in cancer clinical trials

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Content Si Se Puede in the Modern Era: Latino Children Beating the Odds of Underrepresentation
in Cancer Clinical Trials
by
Henry Garcia
Rossier School of Education
University of Southern California
A dissertation submitted to the faculty
in partial fulfillment of the requirements for the degree of
Doctor of Education
May 2024

© Copyright by Henry Garcia May 2024
All Rights Reserved

The Committee for Henry Garcia certifies the approval of this Dissertation
Marc Pritchard
Eugenia Mora-Flores
Maria Ott, Committee Chair
Rossier School of Education
University of Southern California
2024

iv
Abstract
There is a lack of representation of U.S. Latino pediatric cancer patients in clinical trials. Every
year, around 16,000 cases of cancers are diagnosed in individuals under the age of 21 (American
Cancer Society, 2021). Of these cases, approximately 18% affect Latino children (American
Cancer Society, 2021). Among minorities, Latino children have the highest rate of metastatic
disease and yet, they represent only 2% of total cancer patients enrolled in clinical trials within
the United States (American Cancer Society, 2021; Arevalo et al., 2016; Cunningham-Erves et
al., 2021). This study employed Bronfenbrenner’s ecological systems theory (1979) and
Solorzano and Yosso’s LatCrit theory (2001) to guide the qualitative research. This research
study included semi-structured interviews with 10 U.S. Latino sets of acculturated parents that
provided insights into the challenges and cultural factors that influenced their decision-making
process to consider a clinical trial for their child. The findings from this research study outlined a
combination of information gaps and sociocultural factors effected by poor socioeconomic
conditions that impact clinical trial participation rates. The study’s recommendations are to
certify translators, form triadic teams led by doctors and include social workers and non-profit
organizations to coordinate clinical trial information, and provide resources for mothers in need
by connecting them with other mothers for sympathy.
Keywords: acculturation, cancer, children, communication, information gaps, language
barriers, Latinos, limited English proficiency, sympathy, trust

v
Dedication
To the participants in this research study who shared their stories with me and for their
commitment to persevere in the land of the American Dream. ¡Si Se Pudo!

vi
Acknowledgements
The energy to embark on this journey would not have been possible without the presence
of God and Mi Virgen de Guadalupe in my life. I am deeply appreciative of my life partner and
best friend, Abel, for encouraging and supporting me through this doctoral adventure. I extend
my heartfelt gratitude to my three angels: My grandmother, who instilled the Latino traditions
that I abide by today; my dad, who taught me about integrity; and my eldest brother, Jessie, who
has been so valiant, courageous, and patient in this lifetime. It is a blessing to have a fantastic
support system! Thank you to my mom, brothers Gustavo, Cesar, and Richard, sisters-in-law,
first cousins, uncles, aunts, nieces, and nephews in Mexico and the United States.
Thank you to my close friends that I chose to be my extended family over the years:
Susan, Candi, Anthony, Cuquis, Susi, Horacio, Naomi, Manuel, Latyana, Azadeh, RoRo, Nancy,
Adriana, Andrea, MarLu, Rocio, and Karen. All the memories and experiences we have shared
together will be a part of me forever. Thank you!
To my amazing Cohort 21 colleagues and to all my esteemed professors who taught me
so much over the past 4 years. To my dissertation committee, including my remarkable chair, Dr.
Ott, and members, Dr. Mora-Flores, Dr. Pritchard, and Dr. Phillips, for all your great suggestions
and feedback that helped me develop this study into what it is today. To my Sunday study group
with Chris, Dayna, Jamie, and Michele. I am so thankful I connected with you guys. So many
insightful conversations! To my Latin@s Unidos OCL 21 chat group, I am so proud to be in your
company and to say que ¡Si Se Pudo! Finally, to the team from my Master’s educational
experience that helped me complete this project: Robert and Tanya Spencer, the best editors and
support team I could ever have chosen.

vii
Table of Contents
Abstract.......................................................................................................................................... iv
Dedication....................................................................................................................................... v
Acknowledgements........................................................................................................................ vi
List of Figures................................................................................................................................. x
List of Abbreviations ..................................................................................................................... xi
Chapter One: Introduction to the Problem of Practice.................................................................... 1
Background of the Problem ................................................................................................ 2
Purpose of the Study and Research Questions.................................................................... 5
Importance of the Study...................................................................................................... 6
Overview of Theoretical Framework and Methodology .................................................... 6
Definitions......................................................................................................................... 10
Organization of the Dissertation ....................................................................................... 12
Chapter Two: Review of the Literature ........................................................................................ 14
Chapter Three: Methodology........................................................................................................ 43
Chapter Four: Findings................................................................................................................. 53
Participating Stakeholders ................................................................................................ 53
Findings for Research Question 1: Information Sources and Gaps.................................. 57
Summary of Research Question 1..................................................................................... 63
Findings for Research Question 2: Barriers Under Certain Socioeconomic
Conditions......................................................................................................................... 63
Summary of Research Question 2..................................................................................... 68
Findings for Research Question 3: Sociocultural Influences............................................ 69
Summary of Research Question 3..................................................................................... 74
Chapter Five: Discussion and Recommendations......................................................................... 76

viii
Findings............................................................................................................................. 76
Analysis of Research Question 1 ...................................................................................... 77
Analysis of Research Question 2 ...................................................................................... 79
Analysis of Research Question 3 ...................................................................................... 82
Recommendations for Practice ......................................................................................... 85
Recommendations for Future Research ............................................................................ 89
Conclusions....................................................................................................................... 91
References..................................................................................................................................... 92
Appendix A: Recruitment E-mail Sent to Non-Profit Organizations......................................... 107
Appendix B: Interview Protocol (English Version).................................................................... 108
Appendix C: Interview Protocol (Spanish Version)................................................................... 114
Appendix D: USC Information Sheet for Exempt Research ...................................................... 120

ix
List of Tables
Table 1: Participant Information…………………………………………………....... 55
Table B1: Demographic Information…………………………………………………. 109
Table B2: Research Question 1……………………………………………………..... 110
Table B3: Research Question 2……………………………………………………..... 111
Table B4:
Table B5:
Research Question 3…………………………………………………….....
Miscellaneous………………………………………………………………
112
112
Table C1:
Table C2:
Table C3:
Table C4:
Table C5:
Información Demográfica……………………………………………….....
Pregunta de Investigación 1………………………………………………..
Pregunta de Investigación 2………………………………………………..
Pregunta de Investigación 3………………………………………………..
Pregunta Adicional…………………………………………………………
115
116
117
118
119

x
List of Figures
Figure 1: Bronfenbrenner's Ecological Theory of Human Development..................................... 8
Figure 2: Conceptual Framework of Bronfenbrenner and LatCrit Theories ............................. 36

xi
List of Abbreviations
ALL Acute Lymphoblastic Leukemia, Acute Lymphocytic Leukemia
AML Acute Myeloid Leukemia
AYA Adolescents and Young Adults
CFR Centered Family Rounds
LEP Limited English Proficiency

1
Chapter One: Introduction to the Problem of Practice
Latino children in the United States continue to be underrepresented in cancer clinical
trial research studies which results in persistent unmet medical needs and an inequity in
accessing lifesaving therapies despite the growing number of options available (Andrasik et al.,
2021; Cunningham-Erves et al., 2021; Occa et al., 2018; Rivera, 2018; Wieland et al., 2021).
Cancer remains the second leading cause of death for children and adolescents worldwide
although literature identifies various socioeconomic and physiological factors and survival rates
continue to trend positively overall since the 1960’s (American Cancer Society, 2021).
Typically, patients with metastatic disease are prime candidates for clinical trials due to the
likelihood that first-line therapies and secondary treatments are no longer effective. Children
with advanced cancer disease experience long-term burdens, such as needing to go for annual
check-ups during remission and having income issues due to one parent needing to quit work to
care for their child (Abrahão et al., 2015). In a study of 2,217 U.S. patients, a higher prevalence
of metastatic cancer disease occurred in Latino children compared to Whites, 25.8% vs. 20.9%,
at the time of diagnosis and increased for those children who live in a limited English-speaking
household (Goulding et al., 2023). This research investigates the barriers Latino pediatric cancer
patients face through the lens of their parents upon needing to consider clinical trials for their
children.
Previous research has suggested higher metastatic rates in Latino children for specific
cancers like leukemia, a lack of understanding complex medical terminology related to clinical
trials, and doctors assuming that parents do not understand them creating mistrust (Goulding et
al., 2023; Lopez et al., 2021). Studies have either focused on biopsychological perspectives or on

2
socioeconomic-political influences with few integrating these two concepts and looking at the
factors from a complementary lens (Bronfenbrenner et al., 1986; Lopez et al., 2021).
Additionally, few studies have explored how Latino sociocultural factors may influence the low
representation rates. An example is understanding the role a patient’s extended family plays in
supporting parents with long-term daycare needs for their children in clinical trials or
accompanying them to numerous infusion appointments (Garcia et al., 2017; Phillips & Jones,
2013). One study involving Latina mothers found their need for an emotional support system,
comfort, and guidance providers during their child’s clinical trial experience is associated with
Latino cultural values of sympathy and personalization (Lopez et al., 2021). Integrating
biopsychological, socioeconomic, and sociocultural factors may provide a deeper understanding
of why low representation rates exist. Given the gaps identified in previous research and the need
for a comprehensive understanding of the factors influencing Latino children’s participation in
clinical trials, it is essential to investigate a Latino parent’s understanding of clinical trials, their
cultural beliefs, and socioeconomic conditions influencing their decision-making. The purpose of
this study seeks to identify how a Latino parent’s information gaps and their cultural values
moderate the likelihood of their child participating in a clinical trial.
Background of the Problem
A vast number of research studies attempt to understand the various personal and
logistical barriers that adult Latinos face when attempting to enroll in clinical trials from a
biopsychological perspective. Research highlights that Latino patients experience fear and a
sense of mistrust for investigators that stems from various factors, including prior traumas related
to immigration and sociocultural antecedents (Cunningham-Erves et al., 2021; Sisk et al., 2019;
Waters et al., 2022). However, it is unclear if this condition is the same for Latino children.

3
Further, in a study of 310 Spanish-speaking caregivers, 80% of the participants with a selfreported not very good or not at all Limited English Proficiency (LEP) failed to correctly
identify if their child participated in a clinical trial 73% of the time, suggesting a high language
barrier rate could contribute to low participation rates (Zamora et al., 2016). Despite offering the
same materials in Spanish, the written protocols are at an advanced reading level and contain
complex medical terminology, which may explain why language barriers continue to affect
clinical trial participation. Similarly, in a study of 32 parents, researchers identified language
barriers that showed doctors struggled to answer questions on risks, benefits, and purpose of
clinical trials necessary for parental decision-making, leading to frustration, miscommunication,
and mistrust of their doctor’s opinion (Waters et al., 2022).
Researchers frequently conduct clinical trials in urban population centers, potentially
limiting access to research facilities for Latinos residing in rural areas (Fischer et al., 2017). For
parents of Latino patients that could travel, the process of enrolling in a clinical trial was
complex, and they often struggled with determining the overall value of participating in a
research study from a fatalistic viewpoint (Arevalo et al., 2016; Costas-Muniz et al., 2013). Since
clinical trial locations are limited, practical factors like the cost of gas to travel long distances,
accumulation of hospital parking expenses, and the likelihood of quitting their job to take care of
the child creates poor socioeconomic conditions that become determinants for access to clinical
trials (Garcia et al., 2017; Puthenpura et al., 2023).
Each year, healthcare professionals diagnose approximately 16,000 cases of cancer in
persons under the age of 21 in the United States, and Latinos represent one of the demographics
with the highest incidence rates (Aristizabal et al., 2015; Garcia et al., 2017). The data suggests
that healthcare professionals enrolled 70% of childhood cancer patients in clinical trials

4
throughout the 1990s, but this level of participation for all children dropped to 52% during the
period of 2008 to 2012 (Aristizabal et al., 2015). Despite the significant advancements in cancer
research since the mid-1950s, inclusion of underrepresented Latino pediatric cancer clinical trial
patients continues to be persistently low (U.S. Food and Drug Administration [FDA], 2023).
Identifying the barriers and implementation of viable actions leads to facilitating access to new
drugs approved by the FDA. Examples of new drug therapies to help treat cancer include kinase
inhibitors first launched in the mid-2000s and genetically engineered cell therapies first released
in 2018 (FDA, 2023; Sleight et al., 2019; Waters et al., 2022).
U.S. Latino children with pediatric cancer come from a wide spectrum of acculturated
families and may be first-generation, second-generation, or beyond. Therefore, it is worth
exploring legal reforms, such as the Dependent Care Provision of the Affordable Care Act of
2010 and the Deferred Action for Childhood Arrivals program of 2012, that created an
opportunity for immigrant Latino children to access health insurance through private or
employer-sponsored insurance for themselves or through their parents (Bae, 2020; Carranco et
al., 2021; Winestone et al., 2021). Socioeconomic factors such as limited English proficiency,
low family income, and access to health insurance are possible reasons for not participating in
clinical trials.
Among minorities, Latino children have the highest rate of metastatic disease and yet,
they represent only 2% of total cancer patients enrolled in clinical trials within the United States
(American Cancer Society, 2021; Arevalo et al., 2016; Cunningham-Erves et al., 2021; National
Cancer Institute, 2020). Research does not provide a comprehensive description of all the
obstacles that impact a U.S. Latino parent’s access to clinical trials or what views they may have
of clinical trials. Instead, most of the literature identifies isolated topics focused on viewing the

5
problem of practice through one lens at a time although a relational view may reflect more
realistic conditions experienced by these marginalized families. Children are not able to express
their concerns and challenges directly, leaving them to rely on parents to seek information from
medical professionals on treatment options to combat their life-threatening disease. The research
design aims to better understand the problems that parents of young Latino cancer patients
encounter in the decision-making process of participating in a clinical trial or not.
Purpose of the Study and Research Questions
The purpose of the study is to investigate the underrepresentation of Latino children
diagnosed with cancer in pediatric clinical trials, focusing on the perspective of parents as
caregivers. Specifically, the research explores how factors such as acculturation and generational
differences influence the integration of process knowledge, barriers to treatment, and Latino
culture among parents or caregivers of pediatric cancer patients. This study applies a qualitative
approach to explore what the barriers to participation are as experienced by parents who are
monolingual or bilingual in Spanish and English. The three research questions guiding this study
are:
1. How do information gaps among parents in the Latino community moderate clinical
trial participation rates for pediatric cancer patients?
2. What barriers do Latino parents face that affect their children’s participation in a
clinical trial and their access to therapies?
3. How do Latino customs and values shape the attitudes that Latino parents have
toward clinical trials for their children?

6
Importance of the Study
A better understanding of the factors that influence a high rate of metastatic disease
among minority patients combined with a low rate of participation in clinical trials could assist
those who are caregivers and the medical care systems that treat Latino pediatric cancer patients.
Completion of this study could lead to improvements in clinical trial participation and the
treatment of diseases. This problem responds to the compelling reasons of saving lives,
increasing knowledge, and raising awareness while benefitting other key stakeholders also
involved in the process, such as principal investigators and community based organizations
(Wieland et al., 2021). The combination of specific biological factors coupled with the unique
health disparities that marginalized people face emphasizes the need for Latino representation in
cancer research through clinical trials (Abrahão et al., 2015). Biopharmaceutical companies and
research organizations like the National Cancer Institute benefit from having a diverse
population in their studies to support the proper evaluation of an investigational drug’s efficacy
(Occa et al., 2018). The families and caregivers of Latino patients also benefit from attaining
relevant information as they represent a significant source of support during the consenting
process and provide interpreter services for those who are not proficient in English (Fischer et
al., 2017).
Overview of Theoretical Framework and Methodology
This study incorporates the use of two theories: the ecological theory of human
development (Bronfenbrenner, 1979) and LatCrit theory (Solorzano & Yosso, 2001).
Bronfenbrenner’s (1979) human ecology theory, also known as the ecological systems theory,
views individuals as maturing within the context of relationships, such as those involving
families, friends, schools, neighborhoods, and society. The ecological systems theory delineates

7
the entire ecological system within which human growth occurs into four socially organized
subsystems: the microsystem, mesosystem, exosystem, and macrosystem (Bronfenbrenner,
1979). At the end of the ecological system improvement phase, Bronfenbrenner added time
called the chronosystem, which focuses on socio-history or events associated with time (Schunk,
2016). Figure 1 presents the environments of young Latino cancer patients at various levels,
specifically highlighting how factors within each level influence potential patient outcomes
regarding enrollment in clinical trials. In summary, the views of this ecological paradigm are that
environment, social interaction, and time play essential roles in human development. In this
research study, I closely evaluate the microsystem, which includes the critical role of parents in
decision-making and caring for pediatric cancer patients. This is a qualitative research study that
analyzes the responses of 10 participant families who responded to semi-structured, open-ended
questions.
Aside from the parents, a child’s immediate settings (microsystem) might include
teachers and doctors who will all develop connections and relationships with each other across
different settings and within larger contexts (Bronfenbrenner, 1979). Factors will influence the
pediatric cancer patient’s likelihood of enrollment in a clinical trial at the mesosystem level. The
child’s development and successful adaptation through their various environments are most
affected by their exosystem, which may include systems they never interact with directly
(Bronfenbrenner, 1979). Any social institution and government agency that makes decisions that
affect conditions of family life can function as an exosystem (Bronfenbrenner, 1977). Examples
of exosystems include policies at the parent’s workplace and a parent’s support system
(Bronfenbrenner, 1979).

8
Figure 1
Bronfenbrenner’s Ecological Theory of Human Development
Depending on the family’s socioeconomic factors, parents have certain resources
available to them that play a critical role in determining a child’s likelihood of accessing new
therapies (Ramírez et al., 2013; Zamora et al., 2016). Seven factors measure socioeconomic

9
status that includes a parent’s education level, the proportion of those unemployed, those with a
blue-collar job, the proportion of people below 200% of the federal poverty level, median
household income, their rent, and their home value if they are homeowners (Abrahão et al.,
2015). In a study of 310 families, 73% of the Spanish-speaking parent caregivers lacked a high
school degree, 88% earned less than $40,000 per year, and 51% found themselves needing to
quit work or change their jobs to care for their children (Zamora et al., 2016). Similarly, 58.3%
of Spanish-speaking Latinos had not graduated or completed their high school education,
compared to 17.7% of English-speaking Latinos and only 6.2% of Whites (Ramírez et al., 2013).
These studies reinforce the necessity of understanding the impacts that the various systems have
on the parents of Latino children in clinical trials.
Indirectly related to the parent’s education level is the knowledge they possess about their
child’s illness. Parental ability to acquire and process knowledge expeditiously is critical when a
life is at stake. Ramírez et al. (2013) collected perspectives from 6,956 U.S. patients across
various modalities, revealing that 74.8% of Spanish-speaking Latinos believed that destructive
behaviors cause cancer, such as displaying fatalistic attitudes, compared to 46.4% of Englishspeaking Latinos and 47.6% of Whites. In this case, the association of race, beliefs, and
knowledge of cancer risk prevention practices influenced decision outcomes.
An integrative review looked at 21 different case studies of Latino caregivers managing
their child’s condition and found that only 24% of them involved decision-making from a male
figure, suggesting the barriers that mothers may face in navigating through the clinical trial
process could be crucial (Desai et al., 2016). Coping mechanisms and understanding the
mother’s support system that may include hospital and school-based resources, spiritual-based

10
centers, and engagement with members within their broader community are all found at the
child’s exosystem level (Costas-Muniz et al., 2013; Johns et al., 2009).
This dissertation uses a second theory, LatCrit, that enables an understanding of how
family, trust, respect, and sympathy serve as other influencers and determinants for clinical trial
participation amongst Latino children (Guajardo et al., 2020). An epistemological lens is used at
the microsystem level to evaluate how the family structure of a young Latino cancer patient is
composed of various relationships that include extended family members who become involved
in the clinical decision-making process (Badger et al., 2019; Desai et al.,2016; Fischer et al.,
2017; Phillips & Jones, 2013). In the macrosystem layer, other Latino cultural values become
prevalent influencers for the family during the child’s cancer journey and are unique assets that
characterize the Latino experience, which includes respect for a person of power, such as a
medical physician, and sympathy which seeks comfort from a family’s community (Phillips &
Jones, 2013; Waters et al., 2022).
Definitions
This study will consistently use several terms. These terms are either defined throughout
the dissertation where first used or in the list below. The definitions are as follows:
• Acculturation is learning and adopting a new culture, which is the dominant culture. This
process measures familiarity with the dominant culture, language proficiency used in the
dominant culture, and the individual’s opinion of present-day values derived from their
original culture. (Felix-Ortiz et al., 1994; Yoon et al., 2020).
• Acute lymphoblastic leukemia (ALL) also known as Acute lymphocytic leukemia is a
cancer that originates from white blood cells within the bone marrow and in the blood to

11
various lymph nodes. The risk for developing ALL is highest in children under 5 years of
age (American Cancer Society, 2021).
• Acute myeloid leukemia (AML) is a cancer that originates in myelogenous cells within the
bone marrow and in the blood but do not travel to lymph nodes (American Cancer
Society, 2021).
• Adolescents and Young Adults (AYA) are a group of patients that includes teenagers
ranging from the ages of 15 to 19 (American Cancer Society, 2021).
• Chronosystem include ecological transitions occurring in their historical sequence and
context (Bronfenbrenner, 1984).
• Exosystem encompasses one or more settings in which the subject is not an active
participant, but events within such an environment affect what happens in the setting
containing the subject (Bronfenbrenner, 1977).
• First-generation or foreign-born are Latinos born outside of the United States or on the
island of Puerto Rico to parents neither of whom is a natural-born citizen of the United
States (Haner & Lopez, 2023).
• First-line therapy refers to the first treatment given for a disease and is often part of a
standard set of treatments that includes one or a combination of surgery followed by
chemotherapy, and radiation, depending on requirements and the tolerance of side effects
(National Cancer Institute, n.d.).
• Limited English Proficiency (LEP) defines a personal characteristic of someone who is
not proficient in English or who has a limited ability to read, speak, write, and understand
English because it is not their native language (Costas-Muniz et al., 2013; Waters et al.,
2022; Zamora et al., 2016).

12
• Macrosystem involves subjects immersing themselves in culture, society, and history,
influencing their beliefs and perceptions about ecological transitions occurring in life
(Bronfenbrenner, 1977).
• Mesosystem includes one or more settings where all a child’s immediate influences (e.g.,
family, school, community, and church) interact. Mesosystems are where a child’s
microsystems connect and influence one another (Bronfenbrenner, 1977).
• Microsystem encompasses the setting or settings containing a child’s immediate
surroundings (Bronfenbrenner, 1977).
• Placebo is a formulation that resembles an active drug or treatment but has no therapeutic
effect (National Cancer Institute, n.d.).
• Second-generation Latinos refer to people born in the 50 states or in the District of
Columbia with at least one parent born in Puerto Rico or another country (Haner &
Lopez, 2023).
• Therapeutic misconception refers to a phenomenon where patients overestimate the
personal benefits of participating in a clinical trial (Hyun & Kimmelman, 2014).
Organization of the Dissertation
This research study consists of five chapters, following the five-chapter dissertation
model. Chapter One provides the reader with the key concepts associated with the
underrepresentation of Latino children in clinical trial cancer research. Chapter Two reviews the
literature and outlines the foundational qualitative studies that researchers performed on this
topic. Chapter Three details the methodology applied in this study, including a description of the
research design, sampling plan, and data collection methods. Chapter Four provides an analysis
of the data presented in a framework to enable the continuation of research long after the end of

13
this study. Lastly, Chapter Five provides a summary of the dissertation, implications, and
research-based recommendations.

14
Chapter Two: Review of the Literature
This dissertation centers on Latino parents in the United States who have a child with
cancer. This study does not attempt to generalize the target population as Latinos are a diverse
group of people composed of different races and who are on a wide spectrum of socioeconomic
factors (e.g., immigration status) and sociocultural paradigms (e.g., degree of acculturation)
(Arevalo et al., 2016; Ritt-Olson et al., 2018). Because Latinos are not monolithic, researchers
must evaluate each pediatric cancer patient’s case individually and from a qualitative perspective
to observe how quickly parents navigate through complex systems and environments for their
child's benefit (Aristizabal et al., 2015).
Parents: Lack of Cancer Treatment Process Knowledge
Latino parents in the United States have information gaps in understanding pediatric
cancer. This could be a contributing factor for low participation rates in clinical trials. There are
procedural gaps on how the patient engages in clinical trials (Costas Muniz et al., 2013; Sleight
et al., 2019; Waters et al., 2022). Further, Latino parents lack the knowledge to help their child
with needs for lifelong care, even if the cancer is in remission. Minority focus groups
emphasized the need for materials to be available in Spanish and at literacy levels they could
understand (Arevalo et al., 2016).
In a study of 271 underserved Latino cancer patients in the New York City area, 65% had
no knowledge of their cancer stage and 38% were unaware of the metastatic state of their tumor
(Costas-Muniz et al., 2013). A study with 310 Spanish-speaking families in Salt Lake City, UT
showed parental ability to correctly identify their child’s clinical trial participation status 55% of
the time compared to White families who were correct 78% of the time (Zamora et al., 2016).
Participant misunderstandings also included the thought that they would receive free healthcare

15
by consenting to clinical trial participation, a phenomenon known as a therapeutic
misconception, and that healthy subjects should not enroll in clinical studies at all (Arevalo et al.,
2016).
Researchers have investigated several factors in the Latino community to identify
information sources (Porter et al., 2022; Sleight et al., 2019; Waters et al., 2022). Two key
factors that emerged concerning Latino parents are poor communication leading to missing
knowledge at the onset of diagnosing pediatric cancer, and secondly, adhering to a long-term
cancer treatment plan, both factors deemed critical for survival (Sleight et al., 2019; Waters et
al., 2022). Furthermore, a lack of communication for Latino parents originates from physician
approaches when discussing pediatric cancer prognosis and disease progression, especially if the
diagnosis is unclear or uncertain (Porter et al., 2022). This leads back to the research question of
when an information gap influences clinical trial participation rates and when it is most critical to
explore the impact that information gaps have on a child’s health outcome. Some studies
examined the role of the physician with Latino parents from a diagnostic perspective.
Role of the Oncologist
In the triadic system of parent-patient-doctor, developmental shifts occur in both child
and parent prominently and to a lesser extent, with the physician. Physicians, as gatekeepers,
who are not able to communicate effectively with the child’s parents contribute to the parent’s
lack of knowledge concerning diagnosis, treatment, and choice to participate in clinical trials.
Oncologist approaches are inconsistent in communication with parents, and this becomes even
more challenging when disease progression is unclear (Porter et al., 2022). From a parent’s
perspective, one out of every five Latino families struggles to communicate with their child’s

16
doctor and one of every ten does not call them at all due to the concerns of language ability and
relatability (Zamora et al., 2016).
Literature suggests physicians tend not to speak in the family’s native language, display
body gestures that are incongruous with Latino mannerisms, and communicate in a style that
avoids conveying clear prognosis messages (Occa et al., 2018; Porter et al., 2022; Waters et al.,
2022). In a study of 265 medical discussions held over 2 years between 33 patient-parent dyads,
less than 3% of discussions included clear dialog and none of the discussions mentioned the term
“survival” (Porter et al., 2022, p. 4). Parents expressed a strong desire to receive accurate
information even if the results were questionable (Ilowite et al., 2017; Porter et al., 2022).
Zamora et al. (2016) reported that 80% of Spanish-speaking caregivers indicated difficulty
communicating with the child’s doctors and accurately knew about their child’s enrollment in a
clinical trial approximately 55% of the time, suggesting a substantial information gap exists.
Physicians indicated they believed Latino parents preferred a “passive decision-making
role” 30% of the time compared to 12% of the time for Whites (Ilowite et al., 2017, p. 3999). In
this case, Latino parents wanted to know about the likelihood of a cure about 89% of the time,
but physicians believed that this was the case 32% of the time compared to 64% for Asians and
57% for Whites (Ilowite et al., 2017). These data suggest a cultural misunderstanding of role
expectations that doctors (generally assumed to be White) have of their Latino patients and is
dependent on a gradient of acculturation from Latinos preferring a completely passive role 13%
of the time to sharing the decision-making responsibility in 64% of cases (Sisk et al., 2019).
Approximately 50% of Latino pediatric cancer patients lacked awareness of the need to
practice adherence, including follow-up with their oncologist as part of their plan for overall
survival (Sleight et al., 2019). A qualitative study was conducted among 128 Mexican American

17
minority groups in Texas to verify their understanding of the role of a researcher in a clinical
trial. The study found that none of the participants were able to correctly explain the role of a
principal investigator (physician) in a clinical trial (Arevalo et al., 2016). Several participants
emphasized the need for more information at the onset of clinical trials, including the risks
involved, the disease under investigation, potential side effects, and subsequent costs, to enable
better decision-making (Arevalo et al., 2016).
Parents: Communication and Language Barriers
Limited proficiency in English can create communication and language barriers for
parents when enrolling their child in a clinical study, potentially resulting in consequential
outcomes, including death in extreme cases when a child does not enroll in a clinical trial
(Goulding et al., 2023). It has been observed that Latino children suffering from cancer are
underrepresented in clinical trials. To understand the reason behind this, it is critical to consider
the intersection of several factors, such as language barriers, information gaps among parents,
and constructs of ethnicity and race. It is essential to evaluate all these factors to ensure equal
representation in clinical trials. Even when medical professionals provide additional resources,
challenges persist that may lead to clinical trial non-adherence, including feeling uncomfortable
going through an interpreter, struggling to understand complex medical terms in protocols, and
experiencing trust issues with their children’s providers (Garcia et al., 2017; Sisk et al., 2019;
Waters et al., 2022; Zamora et al., 2016).
The Rady Children’s Hospital in San Diego evaluated their translation efforts, finding
that they translated 60% of consent forms executed in their office into Spanish and made 80% of
their clinical trial protocols available to patients in Spanish (Aristizabal et al., 2015). These
findings indicate that even though literature is generally available in the native patient’s

18
language, there may be other underlying issues in the documentation that present a barrier such
as lacking cultural context and written at a literacy level that is not suitable for the general
population (Aristizabal et al., 2015; Goulding et al., 2023). Attributing to language barriers was
an observation by Zamora et al. (2016) who reported that 69% of Spanish-speaking parents
waited more than 90 minutes during check-up appointments for chemotherapy administration
compared to 25% of English speakers and that nearly one-third of them felt that their child would
have received better treatment had they spoken English.
Information from 2,217 U.S. patients (28% of a global database) showed that metastatic
disease rates dropped amongst teens suggesting these patients could communicate better with
their doctors compared to younger children who depended on their parents (Goulding et al.,
2022). Further, in a study that included the perspective from 124 adolescents and young adults—
94% identified themselves as Latino and 78% as White— expressed that language barriers were
not as prevalent between physicians and patients as they were between physicians and parents
(Baraket et al., 2019). In comparison, Fischer et al. (2017) led a study with cancer-focused
patients in a clinical trial, including 233 adult Latinos with Stage III and IV cancers in urban and
rural centers in Colorado, and they identified strategies for improving recruitment, enrollment,
and retention. Bilingual nurse practitioners underwent training to serve as patient navigators for
47.5% of Spanish-speaking patients, which, in turn, increased participation rates by 92.0%
(Fischer et al., 2017). This study gave effective proactive team strategies to engage parents of
children in cancer clinical trial research.
Working with Oncologists
There are few Latino pediatric oncologists in the United States serving the Latino
community. For example, during the Aristizabal et al. (2015) study that included 353 Latino

19
cancer patients in clinical trials from 2008-2012, only one Latino pediatric oncologist was
available at the Rady Children’s Hospital in San Diego. Another study cited the scarcity of
Spanish-speaking doctors as expressed by the patients themselves (Lopez et al., 2021). In a study
involving physician-Latino parent dyads, researchers analyzed all discussions from a total
recorded time of approximately 8 hr 29 min, finding that only 1.3% of the discussion focused on
talking about prognosis uncertainty, while the rest involved vague discussions (Porter et al.,
2022).
Oncologists are trained professionals who treat specific diseases. However, in the Latino
culture this may act as a barrier due to cultural insufficiency in understanding common parent
values specific to this community. A study of 63 clinical trial recruiters based in Florida and
Indiana highlighted the common characteristics shared in the Latino culture of patients—using
body language to express themselves, kissing hello or goodbye, and using eye contact—unlike
the professional demeanor and nature of an oncologist’s setting (Occa et al., 2018). Research
also suggests pediatric oncologists tend to use emphatic language (e.g., the word “tiny” to talk
about spots on organs) to diminish the intensity of a dismal prognosis (Porter et al., 2022).
Another study of 32 Latino pediatric cancer participants found that doctors may lack the cultural
humility to communicate the child’s diagnosis correctly to Spanish-speaking parents and may
use language that equates to death when this is not necessarily the case (Waters et al., 2022).
Cultural insensitivity includes doctors perceiving incorrectly that Latino families want to
know less detail about their child’s prognosis than White families (Ilowite et al., 2017; Waters et
al., 2022). In a study of 357 parents who had children with cancer, Latino parents wanted to
know as much information as possible about their child’s diagnosis 89% of the time although
physicians believed this to be the case only 30% of the time (Ilowite et al., 2017). In that vein,

20
researchers conducted a qualitative study of 32 caregivers, during which parents expressed
frustration with doctors for dismissing them and their initial concerns for their children later
diagnosed with cancer (Waters et al., 2022). This feeling of frustration contrasts with other
findings from the literature that suggest many Latino parents hold high levels of respect for
doctors who are seen in a position of authority due to their title and perceived amount of
knowledge (Costas-Muniz et al., 2013; Waters et al., 2022; Zamora et al., 2016).
On one hand, there is an alternative view that flips the barrier factors into reverse where
Latino patients may be more skeptical of their doctors due to the belief that it is the doctor who is
not knowledgeable leading to mistrust and fear (Waters et al., 2022). On the other hand, doctors
described the phenomenon of collusion where they believe all parties avoid direct conversation
about prognosis intentionally (Porter et al., 2022). In the physician-parent dyad, Latinos perceive
the physician as the one in power who should drive discussions, and they do not consider it
collusion when families do not have the same level of understanding as the doctor (Porter et al.,
2022).
Collectively, these studies suggest that gaps exist for clear and honest information that is
imperative in building trust within the physician-parent-patient triad. This data also validates a
consistent theme of cultural misunderstandings, leading to barriers between Latino parents and
medical providers that impact a child’s clinical trial participation. In a study that followed the
stories of 14 Latino cancer survivors, ages 16-29, diagnosed as young children, found that AYA
children who engaged with their doctors directly led to better health outcomes (Phillips & Jones,
2013). For teenage patients, emerging themes of positivity and optimism included building a
strong collaboration with their medical team of doctors and nurses whom they remained in
contact with long after their treatments had concluded (Phillips & Jones, 2013). The Latino’s

21
triadic system of doctor-parent-patient relationship involves multi-dimensional complexity and
contains barriers, such as language and lack of relationship building, that are not as prevalent
when teenage patients engage with their doctors directly (Aristizabal et al., 2015; Ilowite et al.,
2017; Occa et al., 2018; Phillips & Jones, 2013; Porter et al., 2022; Waters et al., 2022; Zamora
et al., 2016).
Insurance and Healthcare Systems
Latino children must rely on parents, medical professionals, and government systems to
obtain treatment for their life-threatening disease of cancer. Research points to the condition of
having access to healthcare and type of health insurance as essential pieces to timely diagnosis
and to the overall survival of cancer in the United States. Access to healthcare correlates strongly
with access to clinical trials that are necessary for children whose cancer returns after remission.
The passage of the Patient Protection and Affordable Care Act (ACA) of 2010 and the
Dependent Care Provision (DCP) enabling young adults to remain on their parent’s medical plan
until the age of 26, remains a landmark piece of legislation for this age group (Winestone et al.,
2021). The implementation of the DCP has sustained a positive impact over time even through
the global COVID-19 pandemic of 2020 that led to increased unemployment rates with many
childhood cancer survivors losing their access to healthcare through their employer-sponsored
insurance plans (Winestone et al., 2021). The DCP has provided a mechanism for this vulnerable
population to maintain coverage (Winestone et al., 2021).
While having insurance throughout the cancer journey is important, research suggests
that it is most critical at the time of diagnosis and during remission; however, more than 25% of
young adults with cancer have some period of no insurance coverage within 35 months of
diagnosis (Abrahão et al., 2015; Winestone et al., 2021). Despite knowing that the chances of

22
better survival occur if treatment is executed within the first 2 weeks after diagnosis, children
have historically been among the highest uninsured block of people in the United States
(Abrahão et al., 2015; Keegan et al., 2019). The Centers for Medicare and Medicaid Services
(n.d.,), before the ACA, reported that approximately 30% of young Americans were uninsured
and one out of six developed a chronic illness like cancer. Despite the benefits of ACA, it has
also created a new set of challenges, such as more restrictive access to certain oncologists,
altering prescription drug formularies that negatively impacted Latino pediatric cancer patients,
and leading to an inconclusive analysis that required further diagnostic laboratory tests (Keegan
et al., 2019). Scott et al. (2015) reported that the impact of reducing the number of uninsured
individuals after the implementation of the ACA went from 35% during 2007-2009 to 31%
during 2011-2012 while patients with private insurance rose from 31.3% to 34.7%, accounting
for most of the uninsured to insured shift.
Research on the number of uninsured children is mixed. A study of 52,774 children
indicated that despite having continuous Medicaid, this subgroup had the highest incidence rate
of metastatic disease, which indicates that the presence or absence of insurance coverage does
not impact survival rates significantly (Keegan et al., 2019). Similarly, in a study of 62,218
young people, researchers observed a similar trend, finding that 8,101 (13.2%) patients of this
population on Medicaid at the time of diagnosis had significantly worse survival rates regardless
of when coverage began (Parsons et al., 2020). However, other literature suggests having no
insurance is the worst situation a family can experience; yet 26% of Latinos were uninsured
during 2017-2018 with uninsured rates at 37% for foreign-born Latinos compared to 9% of
Whites (American Cancer Society, 2021).

23
Research suggests that the type of health insurance—private, public, military, or none—
affected treatment outcomes for cancer at the time of diagnosis, with greater odds of financial
hardship and even patient death (Goulding et al., 2023; Yabroff et al., 2016). Other studies
determined that not having insurance at the time of diagnosis equates to having public insurance
and contributes to delayed treatment, being undertreated, and experiencing worse survival rates
than those with private insurance (Keegan et al., 2019; Parsons et al., 2020). Keegan et al. (2019)
found that pediatric patients with private or military insurance had an advantage, receiving a
diagnosis of stage I vs. stage II-IV cancer at a rate of 58.9%, compared to 28.8% of Medicaid
patients. Abrahão et al. (2015) reported that White and Asian children were more likely to have
private insurance, 80% and 74% respectively, than Black and Latino children, 53% and 40%
respectively, reiterating the disadvantage that insurance types have on young Latinos.
There are limitations of each insurance type relevant to the discussion of creating
disadvantages; however, research suggests that continuous coverage is imperative for survival
(Keegan et al., 2019; Parsons et al., 2020). The use of private insurance plans means parents
must determine who in-network providers are vs. out-of-network providers, which could lead to
higher copays for the patient (Parsons et al., 2020). Additionally, residing in different states can
also impact the types of benefits available to patients. For example, in California children are
eligible for California Children’s Services—an insurance plan provided to every resident under
the age of 18—regardless of parents having an insurance plan (Abrahão et al., 2015).
Socioeconomic Conditions
Socioeconomic conditions, including healthcare access, immigration status, and income
level, exist throughout all layers of U.S. society. Socioeconomic factors impact a Latino family’s
ability to combat their child’s cancer. Some of these factors, such as the parent's knowledge level

24
and language proficiency, have already undergone exploration (Arevalo et al., 2016; Barakat et
al., 2019). However, the interaction between physicians and children must include the parents
resulting in triadic versus dyadic grouping. It is relevant to mention the impedance and lack of
dynamism that exists in parent-patient-physician triads where the engagement with the patient is
not direct like in dyads (Badger et al., 2019; Barakat et al., 2019).
Multiple logistical factors for the parents occur with high out-of-pocket costs, access to
paid sick leave to care for their child, and reliable transportation, which is related to delayed
diagnosis or missed treatment (Keegan et al., 2019; Parsons et al., 2020). The parent’s job
benefits, and family income are two additional socioeconomic determinants in the likelihood of
their child participating in a clinical trial (Waters et al., 2022; Winestone et al., 2021).
Inequitable conditions (e.g., parent’s immigration status) and lack of employer-sponsored health
insurance have created a disparity for young Latino children to access needed cancer treatments
(Buchmueller et al., 2016; Ochoa et al., 2023; Zamora et al., 2016). In the context of this
research, there is a direct correlation between a parent’s job condition to a child’s access to
clinical trials that leads to a greater chance of survival.
In a qualitative study of 15 Latino parents with a child who was a cancer survivor, job
insecurity emerged as a prevalent theme ranging from finding a job that would not retaliate
against them for missing work to difficulty in maintaining employment (Ochoa et al., 2023). In a
similar qualitative study of 56 parents, 67.9% reported a disruption to their employment, 51.8%
experienced a reduction of their work hours or quit their jobs altogether, and 16.1% extended
their maternity leave which led to long-term impacts such as receiving reduced pay (Kelada et
al., 2020). Moreover, parents struggled with financial insecurity that caused hardships and led to

25
borrowing money, accepting charitable contributions, and applying for government aid (Kelada
et al., 2020).
Income Poverty Levels
From a socioeconomic viewpoint, and depending on the state where a family resides,
income is a factor for obtaining benefits, such as Medicaid, Medi-Cal in California, and access to
food stamp assistance programs. The federal poverty level is a commonly used term referring to
guidelines determined and published annually by the U.S. Department of Health and Human
Services to provide eligibility criteria for families seeking economic assistance (U.S.A.
Government, n.d.). In a study analyzing the survival profiles of 9,295 Californian children,
including 4,833 (52%) Latino children from 1998 to 2011, researchers determined that 2,030
(42.2%) of this subset lived under 200% of the poverty level (Abrahão et al., 2015). A separate
study of 1,202 participants, comparing a young population of cancer survivors with an older
generation, found that 337 (28.4%) of the younger generation experienced material financial
hardship, while 157 (13.4%) of patients greater than 65 years old experienced the same (Yabroff
et al., 2016).
Patients in the lowest socioeconomic status lived in the poorest neighborhoods and had a
39% higher risk of death, even after accounting for the type of hospital where they received
treatment and their insurance type (Abrahão et al., 2015). This finding supports a claim of
increased metastatic disease present in patients who live in greater poverty areas, indicating the
overall impact that income and socioeconomic status have on health outcomes and survival
(Goulding et al., 2023). Bronfenbrenner (1979) remarked at a White House conference that
disadvantaged children of color who become chronically ill experience a snowball effect and
suffer through their schooling years, eventually leading to lower productivity, lower incomes,

26
and the need for welfare payments. As more children and young people with cancer achieve a
cure, the future economic stability of this vulnerable population becomes uncertain as three out
of four cancer survivors develop chronic medical conditions, leading to a higher incidence of
parents losing their jobs and reporting financial hardship (Winestone et al., 2021).
Immigration Status
The family’s immigration status directly impacts a Latino child’s development and
represents a unique attribute prevalent in the Latino population. Over 50% of Latino children
born in the United States live in a household with an immigrant parent, according to Zamora et
al. (2016), who evaluated the effect of immigration status intersecting with language barriers for
children undergoing clinical trials. In this study, researchers identified 86% of the patients as
U.S. citizens, and 75% of participant families reported that at least one household member held
undocumented immigrant status. Of the 366 participants, 56 (15.3%) had limited English
proficiency, and 81 (22%) of these Spanish-speaking caregivers stated that their undocumented
immigration status impacted their decision to enroll their child in a research study mainly due to
fears of deportation (Zamora et al., 2016). This psychological reaction to a complex set of nested
systems centered around immigration impacts a parent’s decision-making and ultimately affects
their sick child’s overall outcomes for survival (Arevalo et al., 2016).
The regulatory landscape on the topic of immigration has changed over the past two
decades in the United States. At the turn of this century, the U.S. Congress introduced a bill
called the Development, Relief, and Education for Alien Minors (DREAM) Act that would have
granted temporary conditional residency for illegal immigrants (Carranco et al., 2022). Despite
several attempts, the bill has yet to become law. In 2012, the government implemented the
Deferred Action for Childhood Arrivals program to protect undocumented immigrants brought to

27
the United States as children from deportation and receive permission to work for 2 years,
subject to renewal (Carranco et al., 2022).
In 2018, under the Trump administration, a proposed rule change to remove the
Children’s Health Insurance Plan and the Supplemental Nutritional Assistance Program from an
estimated 8.3 million immigrant children, of which 5.5 million had specific medical needs,
including cancer, almost passed Congress (Zallman et al., 2019). In a cross-sectional study of
1,338 at-risk children, including 1,140 (85.2%) Latinos, 1,068 (79.8%) were likely to lose their
benefits under the proposed rule change because they faced criminal charges for using assistance
programs (Zallman et al., 2019). Further estimates suggested that up to 25% of parents would
have disenrolled their children from the programs out of fear and confusion stemming from the
ambiguous language used in the bills. Changes in governmental policy and programs
demonstrate how impactful decisions made by systems far removed from the child over
immigration can generate barriers and obstacles that deter parents from seeking therapies for
their child who may have unmet medical needs. Immigration directly correlates to accessing
healthcare which directly links to accessing clinical trials.
Sociocultural Factors
The third research question for this study relates to how sociocultural factors influence
the attitudes on clinical trial research. A review of the literature suggests that biological factors,
psychological states, and sociocultural norms under certain socioeconomic conditions in the
familial structure may occur within Latino children and affect their development (Aristizabal et
al., 2015). From a cultural perspective, literature suggests a set of factors that also influence the
Latino population’s participation in clinical trials, such as the need for sympathy as a coping
mechanism, decision-making roles, the presence of a male figure within the family, fatalistic

28
views regarding treatments, and a family’s degree of acculturation (Costas-Muniz et al., 2013;
Phillips & Jones, 2013; Ramírez et al., 2013; Sleight et al., 2019).
Within the microsystem and macrosystem layers is an amalgamation of constructs that
impact clinical trial participation rates. Two topic clusters associated with sociocultural
influences are psychological behaviors at the personal level and Latino-specific cultural values
and beliefs at a societal level (Badger et al., 2019; Costas-Muniz et al., 2013; Sisk et al., 2019).
For the psychological aspects, consistent themes of issues with decision-making leading to
mental health illness emerged from the literature review. LatCrit theory includes major elements
of sympathy, machismo, and fatalistic views that can lead to fear which also emerged as
prevalent themes during the literature review (Solorzano and Yosso, 2001).
Decision-Making and Mental Health
In a study of 372 parents of children with cancer within 12 weeks of diagnosis,
researchers observed examples of psychological-related sociocultural influences at the personal
level in decision-making practices (Sisk et al., 2019). In this study, 27% of parents preferred
passive decision-making roles relying instead on their doctors. Latino culture contains the
traditional value of respect for persons of authority as described by Aristizabal et al. (2015)
which influences decision-making when pursuing therapy (Sisk et al., 2019). However,
decisional regret is another psychological-related sociocultural phenomenon that occurs when
parents took on a role other than what they had desired leading to mental health conditions, such
as anxiety and depression (Sisk et al., 2019). A similar study produced an additional perspective
that suggested a higher Latino-orientation correlated with experiencing fewer depressive
symptoms (Ritt-Olson et al., 2018).

29
A study that included 194 Latino pediatric cancer patients in Los Angeles County from
2011 to 2012, found that Latino children scored higher in symptoms of depression and lower
quality of life on a validated 20-item Center for Epidemiologic Studies Depression scale (RittOlson et al., 2018) compared to Whites. In that study, Latino pediatric cancer patients had
highest rates of depression than all other cultural groups—with Latinos scoring an average of
15.91 and non-Latinos (Blacks, Asians, and Whites) averaging a score of 12.13, with a cutoff
score of 16.00 (Ritt-Olson et al., 2018).
Sympathy
Phillips and Jones (2013) emphasized the significance of familism—a strong Latino
cultural value of warm, close, supportive family relationships as a source of finding sympathy
during a clinical trial experience where many participants in that study expressed their unlikely
chances of survival were it not for the support from their family. Johns et al. (2009) expanded on
the construct of familism as the essence that provided a mechanism for cultivating spirituality,
and religiosity, among a cancer patient’s microsystem of relatives. Sympathy in Latino culture
encompassed the beliefs of personalization, dignity, and respect that Latinos expressed
subconsciously through years of observation, rehearsal, and integration into long-term memory
(Johns et al., 2009; Mayer, 2010). Research suggested that Latina mothers and female caregivers
cope better and can fully support their children when the family’s doctors and community
demonstrate an overt expression of sympathy in daily interactions (Desai et al., 2016).
In a qualitative study involving mothers of cancer patients, a unique theme evolved where
all (N = 3) Latina mothers sought out sympathy from other mothers who had gone through a
similar experience (Johns et al., 2009). Further, mothers from other cultures relied on existing
support services through their children’s hospitals and independently through the internet,

30
suggesting that personalization and human connection through an expression of sympathy is a
significant cultural value for Latinos (Johns et al., 2009). Latino-specific values and beliefs are
sociocultural examples that impact a young cancer patient’s participation in a clinical trial and
often include the element of machismo.
Machismo
A construct pertinent to the discussion of Latino cultural influencers is machismo, where
fathers consider their role in the family to be the strong protector and provider who do not focus
on the emotional aspects of trauma, sadness, and despair (Badger et al., 2019). Machismo has a
strong sense of masculine pride—with positive and negative characteristics—of social
dominance (control), patriarchy, and specific engrained male gender roles within the Latino
family and community (Ceballos, 2013). In Latino culture, machismo is deeply ingrained and
often expected (Badger et al., 2019; Phillips & Jones, 2013). Garcia et al. (2017) described how
the family environment improved in patients exposed to the intervention of revised protocols that
guided staff on how to engage with Latino fathers in an outpatient pediatric oncology clinic who
had experienced posttraumatic stress-type feelings. In this case, a protocol refers to a procedure
that hospital staff will follow to promote consistency and compliance in that setting.
Fear and Fatalism
A persistent lack of knowledge in the Latino community also perpetuated a variety of
sociocultural conventions that were exacerbated by socioeconomic conditions, such as the
creation of fear within poor Latino families, a lack of trust for members outside their community,
and the occurrence of fatalistic viewpoints (Arevalo et al., 2016; Ramírez et al., 2013). Latino
patients exhibited a dichotomy where they tend to either believe in the science or hold an
alternative belief of fatalism—a construct where one feels like the development of cancer is

31
outside their control and where death is inevitable (Ramírez et al., 2013). Fears included negative
feelings about being an experimental subject, harmful side effects from taking early-phase drug
candidates, and the revelation of a patient’s immigration status during the clinical trial enrollment
process that could lead to deportation (Arevalo et al., 2016).
Cancer fatalism is a salient construct related to religion and stems from medical mistrust
in the modern era (Bustillo et al., 2015; Fox et al., 2017). Fatalism, in the context of cancer, has
been associated with pessimism, and the determinants of this behavior included low knowledge
levels, poor self-efficacy, and a lack of perceived control (Ramírez et al., 2013). Thoughts of
demise and the inevitable prevent one from regulating actions and steps needed to detect, treat,
and prevent cancer (Ramírez et al., 2013).
The construct of fatalism as a sociocultural element emerged from the literature as it
related to a knowledge gaps in Latino pediatric cancer patients and their families. In a study of
6,956 cancer patients where researchers collected data using several modalities, they observed
that 74.8% of Spanish-speaking Latinos believed that destructive behaviors cause cancer and is
unpreventable compared to 46.4% of English-speaking Latinos and 47.6% of Whites (Ramírez et
al., 2013). If patients feel that their disease is out of their control and that death is inevitable, it
raises the fear factor and may influence low participation rates in clinical studies (Ramírez et al.,
2013). Another finding was that less acculturated Latinos are more aware than fully acculturated
Latinos about risk control measures to prevent cancer, suggesting that a lesser amount of
technical information might lead to less ambiguity (Ramírez et al., 2013).
Latino Acculturation
In historical context, acculturation indicates the adjustments and changes experienced by
Latino immigrants in response to their contact with U.S. society as their new country while

32
losing their original cultural paradigm (Lara et al., 2005). Research indicated the concept of
acculturation to be a highly complex, multi-dimensional, and multi-level construct that has ties to
socioeconomic factors, such as immigration status, family income, and sociocultural aspects, like
fatalism in the Latino culture (Ramírez et al., 2013; Yoon et al., 2020). Costas-Muniz et al.
(2013) determined that acculturated Latinos seek more information regarding clinical trials and
adopt the same types of practices that Whites do compared to immigrants. In contrast, Zamora et
al. (2016) determined that Spanish-speaking parents living in the United States for less than 12
years were more accurate about their child’s clinical trial status than those who had been living
in the country for more than 12 years—by nearly a 2:1 ratio. Also, Sleight et al. (2019) reported
that an inundation of information may not necessarily promote adherence.
One view from this body of research is that the less acculturated a patient is within the
American lifestyle, the less procedural knowledge they will have about clinical trials, while
another sphere of the literature suggests that the more acculturated the patient, the less
procedural knowledgeable they will have (Sleight et al., 2019; Waters et al., 2022). Sleight et al.
(2019) argued that acculturated Latinos could explain this by receiving a plethora of information
that then becomes overwhelming, eventually causing struggles with following the clinical trials
process. However, another explanation contradicts this finding, involving a contextual
communication model where Latinos relied heavily on context rather than explicit verbalization,
suggesting that having a serious conversation with a person of authority without understanding
the language leads to misperceptions about death as an outcome (Waters et al., 2022). In
situations where language barriers existed—even if interpreters were available to translate—
Latinos felt embarrassed or uncomfortable communicating their feelings through someone else
(Waters et al., 2022).

33
Acculturation also influences psychological constructs, leading to mental health issues
such as regret, anxiety, and remorse (Phillips & Jones, 2013; Ritt-Olson et al., 2018). A study of
194 Latino childhood cancer survivors determined that higher levels of acculturation were
associated with depression and a poorer quality of life than less acculturated males and females
(Ritt-Olson et al., 2018). An explanation for this effect is patients may clash with their parents
who hold on to native values, customs, and traditions leading to desolation and loneliness (RittOlson et al., 2018).
Epidemiological Paradox
The epidemiological paradox describes the occurrence in which Latinos, on average,
experience better health outcomes than their White counterparts despite facing a disproportionate
burden of low socioeconomic status, psychosocial issues, and physical health challenges (Flagg,
2023). In a study that looked at all children born in California from 1983 to 2011, Latino babies
born by non-U.S. mothers had less likelihood and risk of developing certain cancers, including
acute lymphoblastic leukemia, compared to U.S.-born babies (Heck et al., 2016). Experts termed
this phenomenon the epidemiological paradox and best explain it by the positive influence of
originating Latino traditions—decreased stress during the mother’s upbringing, fewer cases of
being overweight, higher adoption of breastfeeding, and lower rates of smoking, drinking, or
drug use during pregnancy (Heck et al., 2016). Epidemiologically, the impact of other health
conditions, such as infertility, cardiovascular disease, and behavioral issues, manifest themselves
more in U.S.-born Latino pediatric cancer patients than in White patients.
In a study of 193 Latino and White childhood cancer survivors, 43% of participants
reported being unaware of the need for long-term follow-up care; however, among Latinos only,
those who were less acculturated were significantly more likely to be aware of such a need

34
(Sleight et al., 2019). A possible explanation for this is that those who received limited
information may feel less inundated or confused (Heck et al., 2016; Sleight et al., 2019). Ramírez
et al. (2013) noted a similar pattern, indicating that Spanish-speaking Latinos were three times
more likely to practice cancer risk mitigation techniques simply by inadvertently living a
healthier lifestyle compared to English-speaking Latinos. This could stem from habits practiced
in their home country (e.g., walking more often due to lack of having a car for routine activities)
or lack of access to processed foods assuming Spanish-speaking Latinos have lived in the United
States for less than 12 years (Zamora et al., 2016).
Historical Implications
Latinos in the United States had the second lowest block of 10-year survival rates from
cancer at 74.4% compared to Whites, who had a rate of 81.5% (Abrahão et al., 2015). Further,
while overall survival rates have improved since the 1950s and currently hover at 90% in most
developed countries, young U.S. Latinos have persistently low survival rates, with adherence to
clinical treatment cited as the primary reason (Abrahão et al., 2015). Data from the Pew Research
Center showed that the rate of immigration to the United States from fourteen of the largest
origin groups in Latin America has slowed down consistently since the turn of the century from
14.1 million in 2000 to 16.8 million in 2005 and 19.0 million in 2013 (López & Patten, 2015).
During this time, the healthcare setting in Mexico (native homeland) exposed children to a lack
of high technology necessary to treat these complex diseases, resulting in a 45% lower rate of
mortality from pediatric cancers in the United States compared to Mexico (Pinheiro et al., 2018).
The trend of slowing migration to the United States over time leads to a significant shift
of increased mortality in the homeland for this vulnerable population (López & Patten, 2015). Of
most young Latino cancer patients in the United States, 76% are either U.S.-born or are part of a

35
family with at least one naturalized parent (López & Patten, 2015). While entitlements undergo
debate within complex legislative processes, it remains crucial to ensure equitable access to
clinical trials for all child cancer patients (López & Patten, 2015). Alvarez et al. (2018) showed
that implementing the Dependent Care Provision of the Affordable Care Act helped middle to
high-income White children and teenagers while failing to help young Latinos.
Fads and trends related to culture that ebb and flow in society also impact how parents
view the clinical trial experience. The University of Southern California’s Dornsife College of
Letters and Science recently relayed in an article that the COVID-19 pandemic also caused the
closure and consolidation of several U.S. Catholic parishes due to low church attendance and
enforceable local ordinances that limited congregation to small groups of people (Llywelyn,
2022). Catholics remain the largest religious group among Latinos in the United States and 52%
of Latino immigrants identify as Catholic (Krogstad et al., 2023). As health and safety protocols
adjust over time, it is too early to determine whether the number of devout Catholics will return
to weekly mass and active membership duties and if this will reshape parental views on the
clinical trial experience (Llywelyn, 2022).
Conceptual Framework
This study identifies the impacts on parents of Latino pediatric patients with cancer due
to low clinical trial enrollment rates. Specifically, what information gaps, barriers, and cultural
factors influence the parent’s ability to enroll their child in clinical trials? From the lens of the
parent’s perspective, key themes using the Bronfenbrenner (1979) ecological systems theory in
the microsystem, mesosystem, exosystem, and macrosystem, alongside the Solorzano and Yosso
(2001) LatCrit theory and shown in Figure 2.

36
Figure 2
Conceptual Framework of Bronfenbrenner and LatCrit Theories
Integrating the application of Bronfenbrenner’s (1979) ecological systems theory and
Solorzano and Yosso’s (2001) LatCrit theory allows for a holistic evaluation of the relationships
between the young Latino cancer patient’s parents (microsystem) and others at the mesosystem
level. The microsystem and mesosystem are the communities where the family lives and seeks
care through clinical trial enrollment, leading to relevant factors at the exosystem, macrosystem,

37
and chronosystem levels. As with all other groups of people who migrate from their native
homeland to the United States, Latinos become embedded within nested, interconnected systems
that evolve into patterns of ideology (macrosystem) as they affiliate with existing social
institutions (microsystem and exosystem) in their new environment (Bronfenbrenner, 1979). It is
through this process of acculturation (exosystem) that we see patterns emerge among individuals
who associate themselves with a particular set of traditions, values, and beliefs in the
macrosystem (Bronfenbrenner, 1979). The ecological systems theory posits that exposure to
different interactions within an environment can change these psychological conditions (LatCrit).
A Child’s Immediate Resources
The three elements of a microsystem are the activities, roles, and relations that involve
the child, which at the beginning of life are simplistic and dyadic in nature between them and
their parents (Bronfenbrenner, 1979). This study considers a child’s home and school as the two
main institutions supporting children. The first represents a highly informal environment where
the family lives, while the latter is a formal setting where the child learns from education
professionals (Bronfenbrenner, 1979; Garcia et al., 2017). In Latino culture, extended family
members, such as the grandparents, play an integral role in the child’s family—often living with
the patient, helping to take care of them, and can be directly involved in key decision-making
(Badger et al., 2019; Phillips & Jones, 2013).
In the context of a Latino pediatric cancer patient, limited research exists within the
school environment, with most of the research focusing on the challenges parents face and not
the teachers (Zamora et al., 2016). Physicians only become part of the microsystem in cases of
direct interaction with pediatric patients, but the child’s inability to make decisions limits this
involvement. Therefore, most research evaluates the parent-child-doctor triadic system

38
(Bronfenbrenner, 1979). Waters et al. (2022) emphasized the need for doctors to practice cultural
sensitivity in communicating with parents by offering hope, limiting the delivery of direct
messages in front of the child, and remaining unbiased in assuming that the family has
insufficient comprehension skills.
Parental Factors
The primary focus of this study identifies the parental factors that impede the ability to
enroll the child in cancer clinical trials. This study evaluates the relationships between the
systems using a process-person-context-time (PPCT) model to address the research questions
(Bronfenbrenner, 1992). In the PPCT model, proximal processes are progressively complex
reciprocal interactions between a person and their environment, which “must occur on a fairly
regular basis over extended periods of time” (Bronfenbrenner, 1995, p. 620). These interactions
may involve persons, objects, or symbols. Latino children constitute only 2% of clinical trial
participants in the United States (American Cancer Society, 2021). This underrepresentation is
relevant because research indicates the reality of multiple complex barriers to effective
enrollment for Latino children in clinical trials. Compelling reasons for this study include saving
lives, increasing parent process knowledge, and establishing Latino cultural awareness that will
benefit key stakeholders involved in the process, such as parents, children, physicians, hospitals,
principal investigators, and community-based organizations. Integrating process knowledge,
barriers, and Latino culture from the perspective of the parents aligns this research with
Bronfenbrenner’s (1979) premise that a person’s way of dealing with their environment is most
affected by their exosystem. Examples of elements within the exosystem are parental support
mechanisms, socioeconomic and acculturation factors, including cultural and generational
differences, social services, healthcare access, and lastly, government policy.

39
System-level Functions
The literature suggests that the pathway to eradicating cancer in Latino pediatric patients
is an arduous one. Research describes an improvement in communication when teenagers speak
with their oncologists directly, yet this remains a significant problem for younger children who
must depend on their parents to serve as their primary advocate (Baraket et al., 2019;
Bronfenbrenner, 1979). In Latino culture, the role of the family extends to grandparents, aunts,
and uncles as well as esteemed friends, neighbors, and fellow parishioners (church) who act as
caregivers, decision-makers, and support systems, especially for a cancer child’s healthcare
management needs (Badger et al., 2019; Ochoa et al., 2023). Bronfenbrenner (1979) emphasized
that the ability of parents to raise their children successfully depends on their role demands,
stresses, and support systems emanating from other settings enhanced by the adoption of public
policies and practices that create new settings for the child.
Although the medical community has responded with developments in biology,
psychology, and sociology, gaps remain, and opportunities still exist. Evidence from across
healthcare systems highlights existing inequalities for Latino pediatric cancer patients,
warranting further analysis to evaluate the foundational elements of this complex structure
(Waters et al., 2022). Bronfenbrenner (1977) stressed the need to understand the nature,
strengths, and weaknesses of these existing structures that drive socialization while modifying
the practices that enhance development in each system.
A rich tapestry of traditions, values, and beliefs within the Latino culture exists as
patterns of ideology and lifestyles (macrosystem) reflected in socialization practices
(Bronfenbrenner, 1977; Solorzano & Yosso, 2001). LatCrit theory shows how different types of
subordination and marginalization become deeply rooted in all aspects of a Latino pediatric

40
patient’s environment, as outlined by Bronfenbrenner’s framework, affecting disparities and
survival chances of this vulnerable population (Solorzano & Yosso, 2001).
Significant external events throughout the chronology of time have caused impactful
ecological transitions that either dissipate and the system returns to a normal state or lead it to a
permanent shift and new way of being, requiring adaptation. Parents face challenging decisions
on how to best care for their children; it is an iterative process that changes over time (Sisk et al.,
2019). Events like the Great Recession of 2007-2009 and the COVID-19 pandemic of 2020
fundamentally led to many young Latinos losing their health insurance either because their
parents became unemployed or they did (Winestone et al., 2021).
Summary
Latino cultural beliefs, customs, and values shape parent behavior when considering
clinical trials for their children to participate in. There are multiple determinants involving the
complex interplay of biological, psychological, and social influences that perpetuate a role in the
health and disease of individuals by race, sex, and age (Institute of Medicine, 2001). However, a
less widely recognized but important factor is the inclusion of one’s socioeconomic status, the
influence from social networks, employment status, and one’s personal beliefs (Institute of
Medicine, 2001). Psychological aspects related to the Latino familial structure influence clinical
trial participation, including hesitancy to address mental health issues, stress caused by financial
pressures, delayed decision-making, and slow knowledge acquisition rates (Ritt-Olson et al.,
2018; Zamora et al., 2016).
Cancer can affect a child’s development in multiple ways, including emotional and social
problems, falling behind in school, building self-confidence, and developing sustainable
relationships with others (Garcia et al., 2017). In a study of 310 families, 76% of Latinos missed

41
school during cancer treatment compared to 39% of Whites during a similar period (Zamora et
al., 2016). After normalizing the school environment, the question arises as to which variable
factors in the home differentiate these two groups.
The research presented indicated an interconnected lattice of points that, when treated in
isolation, experts consider a contributing variable at best, while the pursuit of an assignable root
cause implies that several factors lead to conditions of poverty, psychological struggles, and
cultural barriers. Bronfenbrenner (1977) concluded that socioeconomic status, ethnicity, and
religion are structured aspects of environments that influence the development of children, and
therefore, this study attempts to validate this in the context of Latino pediatric cancer patients.
The framework for Bronfenbrenner’s (1979) social ecological theory recognized the child being
at the epicenter of needing clinical trial therapy, although this study embraced the parental
perspective.
Developmental changes are not only occurring for the child, but also for the adults who
are serving as the primary caregivers, and this includes mothers, fathers, grandparents, aunts, and
uncles (Bronfenbrenner, 1979). Data suggests that there is an overall improvement in survival
and lower incidence rates as young Latino patients become older or if diagnosis occurs later in
their teenage years, due to the advantage of being able to communicate directly with their doctors
(Garcia et al., 2017). Further, the child depends on mitigating the challenges caused by external
forces and not solely by improving parental motivation and knowledge (Bronfenbrenner, 1977).
By studying the external forces, new approaches that researchers can examine and analyze may
improve survival rates for pediatric Latino cancer patients.
Over the next 20 years, experts estimate that cancer will increase in the Latino
community by 142% compared to only 42% of the overall U.S. population (Phillips & Jones,

42
2013). Implementing an improvement plan to tackle this problem of practice is vital to ensuring
equitable access to all. This research study can mitigate some of these disparities and improve
the chances of survival for this vulnerable population.

43
Chapter Three: Methodology
The problem of practice for this study is to understand the challenges that exist for
parents of young Latino cancer patients to access cancer treatment through clinical trials.
Chapter Three presents the research design and methodology for data collection and analysis for
the study. The purpose of this project is to evaluate the reasons why Latino children diagnosed
with cancer have low representation in clinical trials based on the viewpoint of parents as
caregivers. While a comprehensive analysis would gain perspectives from all stakeholders, for
purposes of this qualitative study, the stakeholders are Latino parents that have a child with a
cancer diagnosis that has needed a cancer clinical trial. The primary reason for speaking with
parents is because the child cannot articulate the gaps identified in the literature review. The
research instrument of choice is the interview method because it effectively collects data that
researchers cannot directly observe and enables the voices of the families directly impacted by
this problem (Patton, 2015). This chapter outlines the methodology of the study, details data
collection through interviews, and explains the analysis and presentation of the data. The chapter
concludes by outlining and addressing the ethical considerations of the study.
Research Questions
The following three research questions guided the study:
1. How do information gaps among parents in the Latino community moderate clinical
trial participation rates for pediatric cancer patients?
2. What barriers do Latino parents face that affect their children’s participation in a
clinical trial and their access to therapies?
3. How do Latino customs and values shape the attitudes that Latino parents have
toward clinical trials for their children?

44
Overview of Design
This study adopts a qualitative research approach using a small sample of participants to
better understand the problem through their real-world experiences, settings, and environments.
Qualitative research relies on first-hand knowledge of the experiences Latino parents had in
obtaining cancer treatment and participation in a clinical trial for their child. This research design
uses narrative inquiry developed by Clandinin and Connelly (2000) and informed by Dewey’s
(1938) characterization of the human experience based on situation, time, and interaction to gain
knowledge from the parents’ perspective and combine their views in summary (Creswell &
Creswell, 2018).
The main data collection technique uses direct in-person interviews with Latino parents
through a focused set of semi-structured, open-ended questions. Merriam and Tisdell (2016)
stated that the semi-structured approach allows the researcher to respond dynamically and
follow-up on the questions expressed by the participant. These sequential questions seek to gain
parent understanding of the knowledge needed for their child’s clinical trial enrollment, barriers
present, and cultural values identified from a parent-reflective perspective (Creswell & Creswell,
2018). Parent responses may vary, but the same questions apply to all subjects to avoid bias in
data collection. Questions concentrated on knowledge, experiences, and types of resources
available to the parents. Structured follow-up questions anticipated the need for additional
information, insights, and explanations, particularly recognizing that not all parents, as
caregivers, may express their experiences equally (Creswell & Creswell, 2018).
Research Setting
I identified participants through social media outlets and cancer caregiver support
networks (e.g., non-profit organizations). An example of the initial email sent to advocates at

45
non-profit organizations is found in Appendix A. These support networks are appropriate
recruitment settings to reach parents who have received a diagnosis of their child as having
cancer. In addition, participation criteria included parents who went through a decision-making
process to participate or not. For the research questions in this study, interviews were specifically
with Latino parents without regard to English proficiency. Badger et al. (2019), Phillips and
Jones (2013) indicated the Latino’s extended family members played an integral role in the
child’s family, such as the grandparents who may be living in the household and directly
involved in key decision-making. Fischer et al. (2017) used a familiar person to the Latino
patient, such as a known clinical staff person, and hired bilingual nurses that served as trained
patient navigators, producing a high cancer clinical trial participation success rate of 92%.
Therefore, using cancer support network staff to initiate the interview process with parents, and
including key extended family members, increased the likelihood of producing rich data from
each participant.
The Researcher
This research work inspired me to study the problem and through the findings, make
recommendations that can lead to coping strategies tailored for the Latino community and,
simultaneously, improve access to clinical trials. As a Latino and coming from a family that
experienced cancer directly at a young age with my own father 20 years ago, I understand the
complexities of accessing treatment and clinical trials to broaden the body of knowledge for the
Latino community-at-large. Additionally, having worked in the pharmaceutical industry for over
20 years in quality best practices, I am acutely knowledgeable about cancer therapy trials for
drug approval and working with various government agencies for the commercialization of new
drug therapies.

46
From a position of reflexivity, my past experiences with the cancer treatment process
included manually phone calling principal investigators to inquire about enrollment opportunities
and translating the clinical trial protocol from English into Spanish for my father. This
background could potentially create a bias as I may understate a participant’s experience in
comparison to mine, although the time and availability of pharmaceutical interventions are
different now. This bias could influence my study through the questions asked during the openended portions of the interviews. During interviews, I maintained mindfulness of my
mannerisms, considering my expressive nature, and strictly adhered to pre-established questions
to maintain focus and minimize any unconscious influence during the conversations. Further, I
reduced any bias through member checking, maintaining an ongoing dialogue with the
participants, and asking for a reaffirmation of my interpretations and the intended meaning in
their responses (Creswell & Creswell, 2018).
I am a scientist by education and trained in the discipline of quality assurance where there
is a natural tendency in my line of work to find an absolute truth through process identification
and root cause analysis. This background leads to framing my research through questions that
emphasize finding meaning or articulating how things work. To address the bias of looking for
only one empirical way of accessing a clinical trial, the intention is to collect details of a
participant’s experience through reflective rich descriptions and include their stories through
quotes in the results section of my study.
Data Sources
For this study, the data collection method involved interviews. The target number of
participant Latino parents included a sample of 10 subjects, chosen purposefully as this number
anticipates reaching data saturation (Merriam & Tisdell, 2016). By design, the structured

47
interview questions lasted for approximately 45-60 minutes with each participant. The study
design did not require parents to have a command of the English language as part of the
inclusion criteria; therefore, the choice of having the interview conducted in either English or
Spanish allowed flexibility to each participant. A professional third-party service provider,
Happy Scribe, translated all interview notes and recordings from Spanish to English for
interviews conducted in Spanish, certifying their accuracy before data analysis. The main
considerations for conducting interviews with a video option were to help Latino families feel
comfortable in the process of sharing their personal experiences to collect quality rich data.
Creating an audit trail is another important aspect of maintaining study credibility.
Therefore, participants gave their consent to the recording of interviews using a recording
device. Participants engaged in interviews through an online platform, which provided flexibility
to select a convenient time and location, such as their home or workplace, while ensuring
neutrality. The interviews followed a semi-structured approach, allowing me to solicit follow-up
questions if required. Structured questions sought to understand parents’ reflective perspectives
regarding how knowledge impacted their child’s participation in a clinical trial, to identify the
barriers they experienced, and to describe whether sociocultural factors influenced their decisionmaking process. At the beginning of the interview, participants provided preliminary
demographic information to understand their family structure. The questions are based on family
experiences, their understanding of metastatic cancer, and treatment options, along with
socioeconomic and sociocultural factors. The questions were open-ended and single-focused,
intended to address each topic in a sequential manner. For a complete list of the questions, refer
to Appendices B and C for the interview protocol in English and in Spanish.

48
Participants
I conducted interviews with Latino parents in the United States who either had a child
currently enrolled in, had previously participated in, or considered participating in a pediatric
cancer clinical trial. The time limit of when they had participated or not in a clinical trial for
inclusion in this study was not relevant and remained open-ended. All participants completed
preliminary screening to collect demographic data (e.g., medical insurance, state where they
lived, and how many children were in the family). The inclusion criteria were that parents came
from a Latino heritage and had undergone the decision-making process regarding whether to
enroll their child in a pediatric cancer trial. Only legal parents could participate in the study to
avoid a complication in determining the legality of having custody over their child.
Instrumentation
The interview protocol, detailed in Appendices B and C consisted of semi-structured,
open-ended questions, providing a platform for participants to freely express their opinions,
values, and beliefs concerning their child’s potential involvement in pediatric clinical trials
(Creswell & Creswell, 2018). These questions helped gain the most realistic understanding of the
multifaceted challenges stemming from information gaps, barriers, and cultural influences on the
decision-making process and participation in such trials. The research questions and conceptual
framework were the guiding principles for this study. I included probe questions in the protocol
to help me better understand the participants’ experiences and perspectives.
Data Collection Procedures
The data collection procedures occurred through an online video conferencing platform
with a recording feature. I transcribed every interview with a professional third-party
transcription service, Happy Scribe. I reviewed the audio transcripts to ensure integrity and

49
develop coding themes based on participant responses. All participants provided verbal informed
consent and granted permission for audio recording before the interviews, which lasted 45-60
minutes. Throughout the interview, I took notes to capture contextual elements, including
nonverbal cues, speech pauses, and environmental factors.
Data Analysis
After completing each scheduled interview, I analyzed the data, transcribed the audio
transcripts using Happy Scribe, and exported the transcript to Atlas.ti, an advanced data science
analytics tool. Then, I coded the data based on themes among the participants that aligned with
the research questions guiding the study. The use of coding for the research study was
appropriate as it enabled me to organize the data based on words representing categories salient
to the participants and their experience with pediatric clinical trials. Finally, I identified themes
related to the conceptual framework of the study based on the coded data.
Trustworthiness and Credibility
The research study aimed to ensure the credibility and trustworthiness of the collected
data in an ethical manner (Merriam & Tisdell, 2016). I sought to instill confidence in readers
when discussing data collected from interviews. Credibility refers to the confidence placed in the
truth of the research findings, while trustworthiness pertains to having confidence in what a
researcher reports (Merriam & Tisdell, 2016). To enhance credibility, I recorded the interviews
and used verbatim data in the form of quotes directly inserted into Chapter Four. To increase
trustworthiness, I clarified any potential biases through practicing reflexivity during data capture
and thematic analysis. Additionally, I utilized member checking to ensure understanding of
participant views and presented participant narratives unmodified. I ensured that the data

50
collection process met the credibility and trustworthiness requirements to generalize the findings
to the broader population with the goal of improving access to pediatric clinical trials.
Conducting and analyzing an interview requires understanding one’s influence on what
participants share, the selection and utilization of data for study analysis, and how that analysis
influences the study itself (Maxwell, 2013). To maintain credibility and trustworthiness in a
study, researchers must vigilantly fulfill their role and mitigate potential bias. This section
discusses the qualitative approach employed in the study, utilizing semi-structured interviews to
gather and analyze data from Latino parents involved in the decision-making process regarding
pediatric cancer clinical trials.
Having a diagnosis of cancer in my own family, I acknowledge my own reflexivity to
understand and disclose how I could influence, and how the study’s research process could
influence, others. My role, gender, ethnicity, and race may influence the depth and even quality
of conversation in the interviews. Due to my own family cancer experiences, I intend to use the
interview protocol to define my intent transparently and explicitly with the study (Maxwell,
2013; Merriam & Tisdell, 2016). The interview protocol is a critical guide to focus on gathering
responses from parents who have faced challenges in the cancer clinical trial experience with
their child. To maintain credibility, I actively checked my own biases through a professional
best-practices approach.
The first technique involved applying the member checking protocol during the
interview, and the second entailed employing it during the data analysis of this project (Merriam
& Tisdell, 2016). During the interview, I practiced summarizing and paraphrasing any long
statements from participants, clarifying, and simplifying the meaning of their responses. During
the data analysis, I used a structured four-step process to transcribe the interviews in participants’

51
own words, use in vivo coding, created a note-taking matrix to develop themes, and interpreted
contrasting observations and outlying themes posed in literature and the conceptual framework in
this study. A second technique applies the documentation of a robust audit trail (Merriam &
Tisdell, 2016). An example of robust audit trails were the transcripts generated from the recorded
interviews.
Powell et al. (2012) proposed that the value of an interview is conditional, based on the
skill level of the interviewer. While research shows that selective sampling is an inherently
biased process (Merriam and Tisdell, 2016), using multiple points of view and obtaining data
saturation (Maxwell, 2013; Merriam & Tisdell, 2016), I am interviewing participants not known
to me. I intend to reach saturation through semi-structured interviews, including the option to ask
follow-up questions during the interview. Qualitative strategies enhanced the credibility and
trustworthiness of this study, including self-reflective bias clarification (Creswell & Creswell,
2018; Merriam & Tisdell, 2016). The interview protocol, types of questions and probes,
recordings, note-taking systems, and tools contribute to the quality of the study (Merriam &
Tisdell, 2016).
Ethics
The study ensured participant confidentiality and voluntary participation through the
informed consent process (Creswell & Creswell, 2018). Before any data collection, the
Institutional Review Board approved the study. Each participant verbally consented after I
disclosed the study’s purpose, provided statements on benefits and risks, as well as guaranteed of
confidentiality, anonymity, and data security. Each participant voluntarily gave their approval
before the study commenced (Creswell & Creswell, 2018). I gave participants the option to
discontinue the interviews at any point. Additionally, no modifications were made to their

52
recorded responses to maintain accuracy. I maintained confidentiality by using pseudonyms, and
I securely stored participant recordings in encrypted folders. I did not compensate the
participants and their involvement was voluntary.
This study strived to better serve young Latino cancer patients, their families, and the
support systems that aid them in their communities. The patient’s medical team will also
potentially gain from appreciating the cultural aspects relevant to Latinos (e.g., respect, extended
family, and sympathy) when explaining the risks and considerations of clinical trial research to
their patients. It is important to recognize that Latinos are not a monolithic group of people, and
there is a wide variety of Spanish dialects and cultural diversities that need consideration.
This study involved collecting reflective data from Latino parents who have considered
or experienced pediatric cancer clinical trials. Verifying participant understanding involved
summarizing the information parents provided and ensuring the accuracy of their responses. The
study did not pose harm to participants or to any organization. I designed the interview questions
and framed the scope of the study, with the purpose of understanding the factors influencing a
Latino parent’s decision-making process when considering clinical trials for their children. I plan
to disseminate the study results to key stakeholders involved in pediatric clinical trials.

53
Chapter Four: Findings
This chapter summarized the results and findings from the interviews conducted to
identify the contributing factors and barriers that U.S. Latino families face when considering
clinical trials as an option for their children. The research study utilized Bronfenbrenner’s
ecological systems theory (1979) to identify a holistic set of stakeholders and to describe their
interactions amongst each other that influence a parent’s decision-making. After each interview,
I analyzed the data to identify themes relevant to the study’s research questions. The discovered
themes provide greater context and help medical professionals and community service providers
create actionable interventions that improve their level of caregiving to U.S. Latino families.
Three research questions guide this study:
1. How do information gaps among parents in the Latino community moderate clinical trial
participation rates for pediatric cancer patients?
2. What barriers do Latino parents face that affect their children’s participation in a clinical
trial and their access to therapies?
3. How do Latino customs and values shape the attitudes that Latino parents have toward
clinical trials for their children?
Participating Stakeholders
The stakeholder group that participated in individual interviews were 10 sets of Latino
parents that met the sampling criteria outlined in Chapter Three. Participating stakeholders were
in three geographical areas within the United States: Arizona, California, and Georgia. To
qualify for this study, participants needed to satisfy the criteria of having a child diagnosed with
pediatric cancer and offered an opportunity to participate in a clinical trial. Screening included
asking families if they self-identified as Latino, if their child had received a cancer diagnosis,

54
and if they considered participation in a clinical trial to treat their cancer. Additional information
collected during the interview included the child’s age at the time of diagnosis and their medical
insurance coverage status. I divided the pediatric cancer patients into two subgroups based on
age: the first consisted of children aged 0 to 14, and the second consisted of adolescents and
young adults (AYAs) aged 15 to 19 (American Cancer Society, 2021). All 10 families reported
having medical insurance (e.g., Private, Medicare, or Medi-Cal) for their child at the time of
diagnosis.
Cancer Types
Six of the 10 families had a child diagnosed with leukemia, either acute lymphoid
leukemia or acute myeloid leukemia. The remaining four families had a child diagnosed with
brain cancer. I recruited the parents of children diagnosed with leukemia through social media
applications and a snowball technique. Respondents replied to promotional posts and referred
prospective participants. None of the public comments shared any personally identifiable
information. The parents of children diagnosed with brain cancer emerged from a partnership
with a prominent non-profit organization that provides education forums, connects its members
with resources, and offers psychotherapy services for its members across the United States.
Table 1 provides a list of participants, demographics, and source of recruitment.

55
Table 1
Participant Information
Note. N = 10. AZ = Arizona; CA = California; GA = Georgia; AML = acute myeloid leukemia;
ALL = acute lymphoid leukemia; BRN = brain.
Acculturation
The level of acculturation for these U.S. Latino families was determined by asking
questions related to their familiarity with American culture, English language proficiency, and
opinion of their present-day values derived from their originating culture (Felix-Ortiz et al.,
1994). All the 10 families lived in the United States for over a decade and associated themselves
with the American lifestyle. Nine of the 10 families felt like they comprehended and understood
English well. Four of the 10 families were completely bilingual; however, eight of the 10
families preferred to conduct their interviews in Spanish. To evaluate acculturation, I asked
participants questions about their values on family, respect, sympathy, and fatalism in relation to
their originating culture. As a result, nine of the 10 families had assimilated into the dominant
American culture.
Pseudonym Region
Type of
cancer
Insurance
at
diagnosis?
Age at
diagnosis
Participation in
a clinical trial? Source
Olivia AZ AML Yes 18 Yes Social media
Zacario AZ AML Yes 7 months Yes Social media
Ursula CA AML Yes 3 months No Social media
Lisette CA ALL Yes 5 Unknown Social media
Itati CA ALL Yes 2 Yes Social media
Isaac CA ALL Yes 4 Yes Social media
Hanna CA BRN Yes 7 No Non-Profit
Elisa CA BRN Yes 17 Yes Non-Profit
Katy CA BRN Yes 7 No Non-Profit
Zenia GA BRN Yes 7 Yes Non-Profit

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Interviews
I conducted ten semi-structured interviews with acculturated Latino families who met the
acceptance criteria in Chapter Three and who lived within the United States. Parents considered
enrolling their child in a clinical trial as a potential treatment option for their child’s condition. I
conducted all interviews using a video calling platform and recorded for audio. All interviews for
this study were about 45 to 60 minutes in length and conducted from October to December 2023.
Interview questions sought to understand how parents found the information they needed to
decide on being part of a clinical trial, describe the daily challenges they experienced or
anticipated if they would participate in a clinical trial, and whether any traditional Latino values
influenced their decision-making process to participate.
Of the ten families that participated in this research study, six went through a clinical
trial, three chose not to participate in a clinical trial, and one family was unsure if they were part
of a clinical trial. In this case, the child of the one uncertain family received a medical device
(e.g., access port) installed shortly after the parents verbally communicated with the doctor
regarding clinical trial details, but the family could not recall authorizing an informed consent
form. Of the three families that decided not to participate in a clinical study, one of these families
chose to pursue alternative therapies rather than a clinical trial for their child. Another family
could not have their child participate in a clinical trial due to comorbidities that were an
exclusion criterion. The remaining family that chose not to participate in a clinical trial was
reconsidering their decision at the time of their interview for this research study.
Data Analysis
I transcribed all interview audio files using artificial intelligence software, Happy Scribe.
This involved translating the eight interviews conducted in Spanish into English using the

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software, followed by manual verification of the translations. I uploaded the transcriptions to a
data analysis application called ATLAS.ti for thematic coding, along with the use of handwritten
notes taken during the interviews. I continuously updated the thematic codes as they evolved
throughout the inductive analysis process. Each transcript underwent multiple comprehensive
reviews to ensure a thorough coding process for every interview file.
Findings for Research Question 1: Information Sources and Gaps
The first research question seeks to understand what various information sources Latino
parents use to aid in their decision-making regarding clinical trials and how these sources
moderate overall participation rates. When first-line or secondary treatments are no longer
effective, clinical trials may be explored as an alternative if the intervention is feasible
(Zwarenstein, 2009). Some clinical trials may include a placebo, a control to compare the effects
of an active drug. Principal investigators provide clinical trial protocols to decision makers, and
informed consent forms capture the decision maker’s acceptance to willingly participate in the
study that is evaluating the active drug’s safety and effectiveness. Findings from the first
research question resulted in themes of significant time delays, use of multiple information
sources, misunderstanding of a clinical trial, and maintaining positive relationships with medical
professionals. These themes demonstrate the connection between the input of knowledge and the
effect it has on a parent’s decision-making process.
Significant Time Delays from Original Misdiagnosis
Improving pediatric cancer survival rates is correlated with implementing the correct
intervention as close to detection as possible which minimizes the occurrence of metastatic
disease and the need for clinical trial treatments in the first place. In this research study, 60% of
the children received a misdiagnosis originally when they first started to express symptoms that

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led to several months of delay in receiving correct treatment. Parents spoke about why they
persisted in seeking an alternative opinion, and in all cases, the child was unresponsive to initial
treatment regimens. In one case, a family shared that their child’s pediatrician recommended to
do nothing at all stating that there was nothing wrong with the child and that the mother was
exaggerating. In one case, Zenia recalled how their physician diagnosed the child with allergies
and treated the child’s symptoms with steroids for 3 months before head scans revealed that the
correct diagnosis was a form of brain cancer. Lisette’s child received an original diagnosis of
arthritis, and she recalled how her child “had fevers, but I remember that in one week, I took him
to the emergency room three times, and they didn't admit him or anything. Until I remember well
that the child was crawling.” Another parent, Hanna, shared how she felt compelled to travel
with their sick child back to Mexico to seek a second opinion because she sensed that the
primary care physician misdiagnosed her child, a correct intuition.
In addition to the several examples of incorrect physiological diagnosis events, there
were also two cases labeled with mental health issues. In one case, a high school counselor
declared an AYA patient a drug addict and admitted them to a drug treatment facility located on
the opposite side of the country. Elisa recalled how her child was “on the verge of, supposedly,
[of] suicide because he was drinking too much water and because he wasn’t taking care of
himself.” In another instance, a doctor misdiagnosed the AYA patient with having anxiety and
wanted to confirm this by performing a pregnancy test to validate their suspicion that the child
was having sexual relations without telling her mother. These incorrect physiological and
psychological encounters culminated with a cancer diagnosis.
This study found that six of 10 families did not receive the correct information about their
child’s illness until a significant lapse of time passed and their condition advanced to a stage

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where considering alternative therapies became imperative for child survival. Doctors were both
information sources and contributed to the information gaps. These events are examples of
information gaps emerging for various reasons and where socioeconomic and sociocultural
factors may contribute to the number of misdiagnosis events that quickly lead to proliferation of
metastatic disease if not treated on time.
Use of Multiple Information Sources
Once patients received a correct diagnosis and first-line therapy or secondary treatments
were exhausted, all ten families reported obtaining preliminary information about a potential
clinical trial from their child’s oncologist. Families relied on secondary sources of information
aside from their medical professionals, including social workers and non-profit organizations.
Families received information on the drug agent used in the clinical trial, potential side effect
profiles (especially for Phase 1 studies), and trial regimens. Ninety percent of these families felt
the need to validate information provided by the doctor and expressed a high level of selfconfidence in their ability to search the internet as a source of information. Five of the 10
families felt like they received enough information about clinical trials from their doctors. The
other half of participants cited concerns of not trusting the information they were receiving as a
single source of truth or having a poor relationship with the doctor that deterred them from
asking questions.
This research study included three AYAs, two of which were over 15 years of age when
the subject of clinical trials first came up and all three families relied on the patient themselves as
an information source. In one case, Zenia expressed how they believed in considering the
opinion of their child who was 15 years old, originally diagnosed with cancer at the age of 7 and
enrolled in her first clinical trial at the age of 11. Zenia stated, “We didn’t do anything without

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her consent, even though she was little. But she was asked if she wanted to do it, and she said,
yes, I will. And to this day, her decision has been respected.” These examples on the use of
various information streams suggest that acculturated Latinos use a variety of sources that they
relied on when considering participation in a clinical trial.
Latino Parents and Their Understanding of Clinical Trials
Although most of these families communicated that they utilized multiple resources to
collect information, including the internet, doctors, and organizations within the complex
network of community-based agencies, parents felt information gaps remained when trying to
comprehend certain aspects of clinical trials. For example, parents had questions about the risks
in the form of side effects, benefits, and overall purpose of clinical trials. Even after explaining
the details of a clinical trial, one family was unsure if their child was a participant in a clinical
study that included the implantation of an intravenous access device for the administration of
chemotherapies.
The use of medical terminology confused at least 20% of the families, although they
mentioned feeling somewhat familiar with the cancer experience prior to their child’s relapse or
the need to consider clinical trials. One parent, Itati, related how use of the word “experimental”
was not clear from the moment she received the news that her child’s cancer returned. She stated,
“I remember that when they said experimental, I thought it was something that children entered
as an experiment, but not necessarily for a treatment that had not yet been approved.” Itati went
on to explain that her understanding of the clinical trial experience at the time was that her child
would benefit from an oncologist’s closer oversight if she and her husband consented for their
child suggesting these parents experienced a form of therapeutic misconception. The
misunderstanding was an assumption the parents made, not one communicated by the doctor.

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Another parent, Elisa, expressed her confusion with the phrase “non-benign tumor” in the brain
used to describe her child’s cancer after a long period of remission from a central nervous system
cancer. These examples suggest that despite having familiarity with the cancer experience, an
opportunity exists for doctors to improve their communication strategies with families like the
ones in this study who still experienced information gaps with clinical trials.
Three of the 10 families conveyed a common theme of feeling hesitant towards
participating in clinical trials and expressed feelings ranging from skepticism to cynicism over its
benefits. Olivia shared how doctors “made it all sound pretty, that they had already done it to
someone else and it did work for them and things like that. And so, my daughter agreed, but it
didn't help her at all, to be honest.” Another parent, Katy expressed her hesitation in more
optimistic tones as her family originally declined to participate in a trial and were reconsidering
it after multiple discussions in recent days. Katy’s AYA daughter received her cancer diagnosis
at the age of 7 and relapsed during her second year of community college 12 years later.
While some of the families expressed doubts towards clinical trials, three of the 10
families described altruistic feelings towards experimental research. In one example, Zacario
talked about the notion that first-generation Latinos were more doubtful of clinical trials than
second-generation Latinos in the United States because the older generation did not have open
conversations with their doctors about the positive aspects of volunteering. This example
highlights how a few of these families associated their child’s participation in clinical trials with
a deeper sense of purpose and that altruistic feelings correlate to a parent’s fuller understanding
of the clinical trial experience. This example from Zacario poses an opportunity for medical
professionals to explore engaging in more holistic and transparent conversations with their
patients and their families.

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Relationships with Medical Professionals
The importance of maintaining good relationships with their child’s doctors was a
sentiment shared by 50% of the parents in this study and that doing this helped fill in some of
their information gaps towards fully understanding the clinical trial experience. Katy described
her relationship with her child’s oncologist as one of a celestial nature where she said, “the
oncologist that my daughter had, I've always thought that it was an angel who was with us.”
Three of the five families continue to maintain contact with their oncologists to the present,
suggesting these families hold their physicians in high esteem and respect for the impact they
have on their children’s lives. Equally, 50% of the families felt positively towards the intensive
care unit nurses and oncology nurse practitioners who supported their child through their clinical
trial journey. Some of the nurses became good friends of the family and one of the families
shared how a nurse attended their child’s funeral service.
Conversely, half of the families expressed an opposing view elaborating how certain
doctors lacked sensitivity, patience, and at other times felt like some doctors would not take them
seriously when they asked questions regarding what to expect from clinical trials. One parent,
Isaac, gave an example of how he felt disregarded because of his Spanish accent saying, “the
doctor doesn't even want to talk to you because supposedly you are not going to understand him.
But until they really saw that we did understand them, they changed their way of being.” Ursula
observed differences in how doctors treated her and her native-born Mexican husband during
important conversations in the medical office. These examples suggest that some of the families
in this study sensed an implicit bias that created an information gap between the doctor and
them, leading to a disadvantage for the pediatric patient. Other families talked about feeling
uncomfortable with the language doctors used as described by Lisette who said, “I know that

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sometimes they want to be very direct and everything, but I think that kills all hope when they do
that.” This reaffirms the notion that an opportunity exists to close the gap regarding a physician’s
cultural insensitivity to better understand and address the Latino community.
Summary of Research Question 1
While a significant number of information sources are available to Latino families in the
United States, there are still information voids that exist in the interactions between parents of
pediatric cancer patients and their resources. The parents in this study engaged with oncologists
to seek expedited care for their child and they encountered barriers due to not fully
understanding the paradigm of a metastatic disease and the possibilities associated with
experimental research. The interviews exposed some deeper issues of inherent mistrust, a lack of
cultural understanding, and implicit bias not anticipated when it relates to the quality of
information sources. All these factors contribute to the underrepresentation of Latino pediatric
cancer patients in clinical trials requiring shifts in the ways that the medical community serve
this vulnerable population to gain an improvement in participation rates.
Findings for Research Question 2: Barriers Under Certain Socioeconomic Conditions
The second research question identifies the barriers that acculturated U.S. Latino parents
face or anticipate by participating in clinical trials and how daily challenges impact the ability for
their children to go through the trial experience from a practical standpoint. Findings from the
second research question resulted in themes of communication and language barriers, financial
difficulties, and active presence of support services. The themes, when clustered together,
resulted in a set of socioeconomic conditions related to a parent’s job, a family’s acculturation,
and the family’s income level, that contribute towards the problem of hindering information
sharing and resulting in low participation rates in clinical trials. One measure of assessing where

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the U.S. Latino is along their acculturation pathway is by considering their proficiency with
English. This indicator serves as a barometer of other factors, such as financial stability and the
family’s capability to effectively tap into the American system of resources, such as social
workers and community-based agencies to save their child’s life.
Communication and Language Barriers
As observed with the first research question, one of the main challenges the families
faced was to communicate their sense of urgency to doctors effectively since time was of the
essence between managing a treatable disease verses a metastatic disease that leads to needing a
clinical trial. In one example, Itati shared how her child’s doctor repeatedly confirmed that all
preliminary laboratory test results were within normal ranges although subsequent bloodwork
and a retest led to her child’s long battle with leukemia. In this study, 70% of these families
challenged the doctor’s word either because their child’s symptoms worsened, or their intuition
told them to remain insistent. Parents talked about their persistence to compensate for the
ineffective interactions between them and their doctors in the cases of misdiagnosis events. One
parent, Lisette, had to take their child to the hospital multiple times before receiving proper
medical attention. Another parent, Katy, spoke about how awkward she felt questioning a person
with a higher education level than hers and was surprised when questioning her doctor, he
responded with, “I’m glad, because Latinos don’t talk. Latinos don’t ask. Latinos stick to what
we tell them, and that’s the end of that.” These examples demonstrate how persistence was a tool
used to overcome the barrier of parents feeling that doctors were ineffective and unresponsive
although traditional Latino values are more consistent with modesty, respecting people with
higher authority, and being nonconfrontational.

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Although 90% of these families acculturated into the American lifestyle, they described
struggling to understand complex medical terminology and initially preferring to use a translator
when interacting with their children’s doctors. Four of the 10 families were completely bilingual
and did not need a translator while the remaining six families utilized an interpreter provided by
the hospital. Four of the six families understood enough English to recognize that the interpreters
at the clinics were incorrect with their translations, including native born Mexican parent Katy
who represented the one unacculturated family in this study. Katy explained that “with the little I
understand, I feel that there are many gaps with translations, many things that are not expressed
the way you intended.” Another parent, Lisette, explained the frustration felt when working with
an interpreter that could not understand the doctor’s terminology either and translated the
doctor’s messages incorrectly.
The lack of certified translators posed an obstacle for these families that did not receive
accurate definitions of complex terms and multi-step clinical trial protocols that although
provided in Spanish, were challenging to understand for at least two of the families. One parent,
Zenia, described how she conveyed in broken English to her doctor that she preferred to engage
without the use of a translator to avoid misunderstandings. Isaac received a tablet to
communicate with their child’s physician after declining to use a translator, which he found to be
a very impersonal experience. Of the five families that considered themselves somewhat
bilingual, three compared themselves to those who were less bilingual than them and expressed
sympathy towards them. One of these mothers, Elisa, became so disheartened with the lack of
viable interpreters, she became a volunteer at her child’s clinic translating for other families.
While the gesture and good intention is admirable, this challenge becomes an essential problem

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to solve as it is vital for families to receive complete and accurate information that will foster
rapid, high-quality decision-making.
Financial Barriers
Another fundamental obstacle families faced was related to financial instability. Doctors
advised four of the 10 families to consider one parent quitting their job permanently to provide
long term care for their children, leading to non-sustainable economic disadvantages for these
Latino families while dealing with their child’s life-or-death situation. In this study, 80% of the
families had two working parents at the time of diagnosis, 10% of the parents were divorced, and
10% of the families included a stay-at-home parent already indicating that only one family could
take their doctor’s advice without disrupting their income flow. Of the nine remaining families,
three of them included one parent that stopped working, and six of them used the Family
Medical Leave Act (FMLA) of 1993, taking unpaid time off to care for their child, creating a
financial hardship that became a prominent theme in this study for five of the 10 families. In one
family’s case, although the law permitted up to 12 weeks of unpaid time, they only took 4 weeks
because the family needed to pay the bills and feed itself. One parent, Lisette, described the
times when she could not afford food and survived with the meals provided to her child in the
hospital room who at times would not eat because of ill side effects.
To offset some of the financial hurdles, the parents in this research study turned to their
extended families for financial assistance. Four of the families included siblings and cousins that
held charity auctions, hosted bake sells, and opened Go Fund Me accounts to ask for donations.
Seven of the 10 families received support from non-profit organizations, although only one of
the families described receiving actual monetary assistance from their non-profit. Another family
indicated that their non-profit paid some of their utility bills. Four of the 10 families received

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other types of financial assistance from their hospitals in the form of gift cards for food and to
cover gasoline expenses, all coordinated by the family’s social worker.
Role of the Social Worker and of Non-Profit Organizations
The social worker plays a vital role throughout the family’s battle with cancer as they
provide a range of services from gathering information, coordinating assistance, and connecting
families to other resources such as non-profit organizations. In this research study, social worker
engagement was inconsistent and a prominent barrier to a family in cases when the social worker
was not in contact with the parents or only offered support in a limited capacity. While six of the
10 families felt their assigned social worker was heavily involved in providing support, the other
four families never heard from their social worker or felt that the social worker did not do
enough. Olivia, a parent, shared that the social worker informed them that no assistance was
available to her soon-to-be adult daughter, who was about to start her clinical trial and at a
critical point along her journey.
The social worker offered a set of tangible deliverables. Four of the 10 families shared
that they received access to financial assistance programs, one of the 10 families received a
referral for free counseling services, and one of the 10 families felt their social worker explained
the child’s clinical trial protocol carefully. One parent, Hanna, recalled how their social worker
provided her with brochures in Spanish that she kept for future reference. Another parent, Zenia,
talked about how “the social worker helped us cover the expenses of the mortgage, electricity,
water, and provided us with a lot of monetary support as well.” Of the four families that reported
receiving no support from their social worker, a consistent sentiment they all felt missing was an
expression of sympathy from the social worker, at a minimum. One parent, Katy, mentioned that

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she believed that she did not obtain any offers for support services because of her immigrant
status and regretted that her social worker never once asked her if she had enough to eat.
Another important function of the social worker was to assist the family in establishing a
connection to non-profit organizations. Seven of the 10 families received support from non-profit
organizations based on social worker knowledge, and 57% of these families felt that their nonprofit entities created a sense of community for them, which in turn provided emotional stability.
Aside from the financial assistance, three of the 10 families affirmed their appreciation for nonprofit teams who organized field trips, including sporting events and day camps for the patients
and their siblings. The non-profit organizations tended to emerge once the patient was involved
with the cancer clinic. The process of how the connection happened was unclear, but 100% of
the families believed it was through the social worker. The families that worked with non-profit
entities all felt grateful for their experience with them and appreciated their service. The
following examples illustrate how the social worker's interactions and the non-profit
organizations' positive assistance can be enhanced to provide consistent, better-coordinated
services that increase equity among families and make them accessible to all pediatric cancer
families.
Summary of Research Question 2
The findings underscore the profound impact of unfavorable socioeconomic conditions
on families, revealing significant sacrifices made, such as parents leaving their jobs or taking
unpaid leave to care for their children. Acculturation challenges further compounded their
struggles, including difficulties with communication and mistrust in certain service providers
(e.g., translators who were not facilitating bidirectional communication correctly and
effectively). There is a clear need for improved coordination and consistency in social work

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services to ensure equitable support for all pediatric cancer families. However, families engaging
with non-profit organizations reported positive experiences, highlighting the vital role such
organizations can play. These results emphasize the need for consistent implementation of nonprofit services nationwide to support families facing pediatric cancer.
Findings for Research Question 3: Sociocultural Influences
In this study, I asked participants about their cultural background to understand if
Solorzano and Yosso’s (2001) elements of LatCrit theory influenced their attitudes towards
seeking clinical trials for their children. The main elements of LatCrit theory incorporate
constructs, such as faith and religion, the role of an extended family, expressions of sympathy,
and trust factors. As 90% of the families in this study had acculturated into the American
lifestyle, assessing their opinions of their present-day values derived from their originating
culture provided a critical window into how their cultural views and beliefs influenced their
decision-making process. Findings from the third research question resulted in themes of coping
with waves of emotional instability, believing in both spirituality and science, and having other
traditional Latino values. Key concepts emerged that helped shape a family’s view on
experimental research and if clinical trials could serve as a viable option for their children.
Emotional Rollercoaster
Most of the families in this study considered themselves religious, varying in
denomination from Christians to Jehovah’s Witnesses to Catholics. Seven of the 10 participant
families were actively involved and received support within their church environments. A
majority of these seven religious families, 86% of them, reported experiencing a wave of
emotions, from having fatalistic thoughts, to questioning God, and eventually reaching
resolution. Four of the seven families embodied fatalistic thoughts towards experimental research

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throughout their interviews that were reminiscent of leaving it all up to God and that there was
no doubt He led them to the clinical trial. Zenia talked about how God was in control and that if
one truly believed and placed their trust in Him, it would lead to the power of healing upon going
through the clinical trial willingly.
In this research study, three of the seven religious families spoke of how their fatalistic
beliefs turned into questioning their faith in God and subsequently leaving their church or
becoming less involved with their congregation for an extensive period. One of the parents,
Olivia, described how her high level of trust in God prior to the original diagnosis changed to
feeling disappointed in God upon her AYA child’s death which she blamed on the early phase
clinical trial that her daughter consented to against Olivia’s wishes. Two of the 10 families that
did not consider themselves to be religious, but spiritual, expressed anger with God as
exemplified by one of these parents, Ursula, who asked a clergyman that was visiting the
hospital floor to baptize her child during his first chemotherapy infusion and the priest refused.
The second parent, Itati, talked about her animosity towards God upon receiving the diagnosis of
her child having metastatic disease and how she felt that it would impact the child for the rest of
their life.
Eventually, all the families reached an internal resolution with God, including the one
family whose child passed away at the age of nineteen. Three of the 10 families resolved their
experience by embracing altruistic thoughts upon their child’s remission that came about after
their child’s clinical trial experience. Two of these three families even became volunteers with
other non-profit organizations to “return the favor” they received from God by sending them
towards a clinical trial along their cancer treatment journey.

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Dichotomy of Being Spiritual and Believing in Science
Of the seven families in this study that considered themselves to be religious, five of the
families believed in the miracle of God while simultaneously believing in the power of science
and clinical trials to help their children live longer. One parent, Itati, described her belief that
God works through doctors as a means of healing patients. Another parent, Hanna, expressed it
similarly when they said, “Well, my way of thinking and from my experience that I went
through, I believe in both. I believe in science, I believe in doctors, that you must look for
options, because God puts them here to help us. Doctors are like angels.” Zenia attributed God
bestowing knowledge onto doctors to enable His will through them similarly to what both Itati
and Hanna expressed. All three families conveyed a sense of hierarchy with God admired before
anything else followed by doctors primarily because they were agents or executors of God’s will.
These responses describe the rationalization acculturated Latinos believe in by inclusively
accommodating both dimensions compared to more traditional Latino values that do not embrace
science so willingly. Another significant finding is how much religiosity influenced these parents
in the way their disposition and faith guided their decision-making.
Other Latino Cultural Traits
During the participant interviews, I observed examples of trust in a higher power.
According to Solorzano and Yosso (2001), trust is one of the foundational elements of Latino
culture. A lack of trust was a factor that came up in 60% of the interviews where families
expressed hesitancy with the doctors, translators, and social workers. In one example, Lisette lost
confidence in their child’s doctor after the doctor confirmed they were using a database in a
computer to statistically predict the best course of action. The family expressed a lack of trust in
the doctor because they believed the doctor should possess medical knowledge without needing

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to rely on a computer for the answer. Their mistrust seemed to stem from a deeper, more intrinsic
source rather than being superficial. Ursula relayed how her mother taught her never to trust
people “just because they were who they said they were.” These families appeared to
demonstrate a lack of trust based on implicit biases, suggesting there was a deeper reason why
confidence was missing. Isaac talked about how they felt something was off from the moment
they would walk into the doctor’s office. Isaac stated, “They just look at you and assume you’re
going to need a translator.” Ursula related to feeling discriminated against by doctors due to their
“innate biases.” Though not intentional, she felt doctors were less tolerant of people with
accents. The traditional Latino value of trust varies in intensity depending on whether Latinos are
first-generation versus second-generation and beyond. As all these participants were firstgeneration Latinos, their level of mistrust correlated with their degree of acculturation.
Family was a cultural trait that emerged prominently from the interviews. The essence of
family in traditional Latino culture refers to a value or belief system that prioritizes the family
unit over the individual. It emphasizes the importance of family relationships, obligations, and
solidarity, often guiding decision-making and behavior within the family. Five of the 10 families
felt support from their immediate and extended families and appreciated they physically lived
close by while four of the 10 families stressed their long physical distance away from their birth
country and their families. One parent, Lisette, described the difficulties she and her husband
lived through with no family to help with childcare, taking breaks, and tending to normal chores
around the house because of needing to care for their child at their bedside. Her words resonated
with sincerity when she said, “because even as Hispanics who come from other countries and
there is no family here, it is difficult.” There was only one parent who mentioned their extended
families were not supportive of their decision to explore and pursue clinical trials although their

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parents and siblings lived close by. Family is an element that is foundational for Latinos and was
missing for half of the participants in this study. The responses from the participants suggest that
physical distance from their families because of issues related to immigration, financial ability,
and physical proximity correlated to less emotional support resources and presented a barrier for
these participants. Applying a generational lens, these parents are first-generation and closer in
profile to native Latinos where a family member’s role is to serve as a surrogate and an extension
to the parents assisting around the clock due to fewer resources available in local hospitals. In
comparison, American families tend to have more resources available to them with less worry
over leaving a patient in the hands of medical professionals for care, a concept that is more
natural to Whites than Latinos due to their experiences and cultural factors influencing their
perception of the medical system.
Sympathy was another cultural trait that appeared throughout multiple interviews which
was described in four of the 10 interviews. Sympathy is a critical emotional value within the
Latino family structure, and this value remains throughout the acculturation process. These
acculturated families understood enough English to detect incorrect translations that potentially
led them down a different path in their decision-making. Three of these 10 families recalled
moments when they compared their living experience to less bilingual families, resulting in
feeling sympathetic towards them and wanting to help others in need. One of the families began
to volunteer their time to provide translation services for others while another two of the 10
families became volunteers at non-profit organizations interviewing parents of recently
diagnosed patients to determine their greatest needs. Another example where the expression of
sympathy emerged was when mothers engaged with other mothers and shared information or
grieved together. One parent, Hanna, recalled how she became close with “other mothers who

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were there” at the pediatric cancer center. Four of the 10 families described instances where the
mothers shared their sense of gratitude and related to other mothers during infusion visits and
chemotherapy sessions. This set of responses suggest that the cultural value of sympathy remains
prominent for acculturated families and that in the absence of extended families, these
participants found comfort in other mothers as a coping mechanism.
Summary of Research Question 3
Family responses highlight how various Latino cultural traits influenced the attitudes of
Latino parents towards cancer therapies for their children. Parents struggled during a time of
grave peril and leaned on their religious faith as a support system. Constructs like fatalism and
altruism emerged prominently at various points throughout their trajectory along with other
cultural traits such as family, trust, and expression of sympathy that influenced their attitudes
towards science and clinical trials. The responses suggest that while many of these families had
acculturated into the American lifestyle, they still held onto values derived from their Latino
heritage. Despite this, their views towards clinical trials were inclusive rather than polarizing,
indicating a willingness to consider both traditional beliefs of faith in God healing them and
modern medical interventions as well. Additionally, the responses show how the belief in
coexistence of both God and science among these families facilitated their openness to
experimental research, illustrating the complex interplay between cultural influences and
decision-making.
Summary
Chapter Four illustrated the challenges and influential factors raised by acculturated
Latino parents in their decision-making process of having their pediatric cancer child participate
in a clinical trial or not through a set of open-ended interview questions. The findings for the first

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research question related to the lack of trust the families had in the information they were
receiving either because of prior misdiagnosis events, confidence in their child’s doctors,
misunderstanding complex information, and use of multiple information sources. The second
research question found that these families faced communication challenges, language barriers,
financial stress, and varying support from service providers like social workers. The third
research question focused on how acculturated values (derived from originating culture)
influenced a family’s view of clinical trials at times presenting barriers and at other points,
assisting these families in their decision-making. A discussion of the findings and
recommendations to address the problem of practice follows.

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Chapter Five: Discussion and Recommendations
This chapter provides a detailed analysis of how the findings relate to concepts explored
in the literature review. It examines how the conceptual framework, which integrates two
theories, informed the study, and addressed the three research questions. A presentation of
actionable interventions for stakeholders, including medical professionals and service providers,
is based on the main findings, which correlate with the literature and are supported by
interviews. The chapter concludes by discussing the limitations and delimitations of the research
study and suggests potential topics for further research.
Findings
The willingness to participate in a clinical trial is one based out of necessity. For Latino
parents in the United States, a combination of information resources and their values derived
from originating culture under certain socioeconomic conditions regulate the participation of
pediatric cancer patients in clinical trials. Acculturation explains how immigrants transition from
embodying cultural traditions, values, and beliefs to adopting American ones naturally. Nine of
the 10 Latino families in this research study traveled from several different countries and from
the wide span of two hemispheres to the United States for one or many reasons, all facing the
challenge of needing to save their child’s life. The tenth family interviewed had one parent born
in Mexico and the other parent born and raised in Texas. All sets of 10 parents, classified as firstgeneration U.S. Latinos, were at different points along their acculturation journey when they
considered the imperative possibility of participating in a clinical trial because their number of
options was diminishing. The compelling argument to justify participating in a clinical trial is
easy to make, but understanding why the representation rates are so low is much more difficult to
explain.

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To answer why, it is necessary to evaluate all systems in a Latino parent’s life, known
and unknown to them, at the time of clinical trial consideration, which is why the ecological
model frames this problem of practice. The following discussion expands on how information
gaps under poor socioeconomic conditions, along with macro-level sociocultural factors (using
LatCrit theory), are examples that epitomize the compounding effect of only a few Latino
pediatric cancer patients participating in clinical trials. The application of acculturation and
generational lenses helps identify trends from a wider angle, as every family’s placement along
their journey into the American culture is unique and difficult to interpret individually. These
findings are likely to change over time as a parent’s knowledge increases, as their values align
closer to the American culture, and as their socioeconomic conditions improve with their job
situations.
Analysis of Research Question 1
The research study revealed themes including the relatively high number of misdiagnosis
events prior to obtaining the correct outcome, reliance on multiple information sources,
conceptual misunderstandings of clinical trials, and the physician's role as the primary source of
information. At the center of this research question is the cultural trait of trust. Six out of the 10
families experienced misdiagnoses for their child, resulting in significant delays, numerous
ineffective office visits, and a voluminous set of medical records documenting unnecessary
medical tests, all while the patients continued to experience pain. Throughout this time, parents
continued their desperate search for a medical professional to treat their child. Cancer could
often wreak havoc on their host cells when malignant within a short period of time. Missing the
optimal treatment window could conceivably drive a family to mistrust the same medical
professionals who were accountable for the inaccurate preliminary decision-making process.

78
Families utilized a variety of secondary resources, including other doctors, the internet,
and non-profit organizations. The primary reason that 60% of the participants in this research
study gave for feeling the need to verify information provided by the doctors was due to a lack of
trust. The application of a generational lens enables finding a correlation between mistrust and
first-generation Latinos stemming from immigration and fear. Mistrust was not as prevalent with
second-generation Latinos who have birth citizenship rights, a stronger command of English, and
tended to form direct bonds with the medical professionals themselves, as in the case of AYAs
(Phillips and Jones, 2014; Wiley et al, 2012).
A concern with using too many different sources of information is the phenomenon of
epidemiological paradox where unacculturated or foreign-born and bicultural Latinos experience
better health outcomes than acculturated Latinos in the United States, especially if they recently
immigrated to the country (Flagg, 2023). Families tended to become overloaded with
contradictory opinions, and with information on web pages that use unverified sources leading to
skepticism, confusion with identifying the correct cancer stage, and asserting whether the patient
has participated in a clinical trial or not. This observation is an epidemiological paradox because
fully acculturated Latinos presumably have an advantage over Latinos not proficient in English,
and this is worth exploring further beyond the contours of this research study.
Therapeutic misconception was another phenomenon observed during this study where
patients believed they would benefit and gain an advantage over the general population by
participating in a clinical trial. However, the true purpose of a clinical trial is to determine
whether an investigational new drug is effective or not. From an ethical perspective, principal
investigators have an obligation to obtain a patient’s informed consent by explaining the study
purpose, risks and benefits, protocol sequence, and addressing any potential participant

79
questions. While I observed that one of the 10 families was unsure if their child participated in a
clinical trial, they recalled having a verbal conversation with the doctor before the intervention.
To avoid therapeutic misconception from occurring, medical professionals should improve their
communication strategies and ensure that the benefits and risks of clinical studies are clearly
explained to patients before they consent to participate. Themes derived from the participant
interviews point to misunderstandings and lack of trust from Solorzano & Yosso’s (2001)
LatCrit theory that explain why information gaps are prevalent amongst U.S. Latinos and how
this leads to the effect of low participation rates in clinical trials.
Analysis of Research Question 2
The second research question aimed to identify practical barriers faced by U.S. Latino
parents when their child participated in a clinical trial or anticipated experiences that may have
influenced their decision-making. Themes from the participant interviews encompassed both
impalpable items, such as differences in communication patterns between the parent and their
child’s doctors and language barriers, as well as tangible items like financial barriers and
resources, such as access to the social worker and non-profit organizations.
Cultural influences and learned behaviors collectively shape communication patterns,
reflecting how individuals engage and interact with others. The purpose of this research study
was to gather insights from parents (their own voices) of impacted children, rather than from
doctors. On one hand, parents described the doctors’ communication style as direct, impersonal,
and at times, dismissive. In this research study, 50% of the families felt that doctors seemed
impatient in their interactions with them and another 40% felt that doctors did not take the
families seriously, carving out a picture of the doctor as culturally insensitive or out of touch
with the patients they were serving. On the other hand, the literature suggests that doctors

80
perceive U.S. Latino parents as lacking procedural knowledge and displaying cultural values of
modesty and passivity in decision-making that hinder them from fully engaging in asking
questions about their child’s options (Costas-Muniz et al, 2013; Ilowite et al., 2017). The results
highlight tangential communication patterns between both parties, leading parents to develop
mistrust, which complicates their consideration of clinical trials, despite its necessity.
Families were persistent and determined to engage with their doctors by tenacious means
in the diagnosis process. However, only 30% of the families preferred direct, statistically based
messages and prognostic information, while the rest favored clear, optimistic, and hopeful
messages. This distinction in communication styles creates a barrier to establishing confidence,
alignment, and collaboration between doctors and their patients.
The literature review for this research study indicated that Latinos tend to communicate
contextually and less literally, often preferring a passive role in decision-making processes
(Ilowite et al., 2017; Waters et al., 2022). However, this study found that only one of the 10
families displayed this behavior. Elisa recounted her interactions with doctors and school
officials who misdiagnosed her son with a drug addiction. She emphasized her role as “mother
only” and stated that she was “not the doctor, not the psychologist, [and] not the psychiatrist.”
This unique experience from one family suggests that the inclination to adopt a more dominant
position in decision-making may increase over time with acculturation. In this research study,
90% of the families had acculturated into the American lifestyle, which corresponds to behaviors
of persistence and insistence. Recently immigrated Latinos may more closely resemble
traditional Latino cultural values compared to first-generation and second-generation Latinos,
who are more acculturated and tend to demonstrate a dominant decision-making style like
American parents.

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In addition to intangible challenges, these families faced concrete obstacles such as
financial insufficiency and unreliable resource providers like social workers and translators. The
decision to participate in a clinical trial often meant longer hospital stays, increased time away
from work, and the necessity for one parent to quit their job to care for their sick child,
particularly for 50% of the participants who lacked support from extended family members. The
other half of the participants received various forms of financial assistance from their families.
The literature suggests that older-generation Latinos tend to have more economic stability than
recently immigrated or first-generation Latinos, which may explain the financial hardships
observed in this study, since participants were first-generation Latinos (Yabroff et al., 2016).
An unreliable resource for these participants was the social worker in four of the 10 cases
for this research study. The role of the social worker is to serve as a nexus between the families
and financial resources, provide clinical trial information, and give access to non-profit
organizations that can also better equip these families in the long-term because of clinical trial
duration. Better coordination of information can minimize variability and if deployed
consistently, has a positive effect for the family. A combined effort, including the formation of a
triadic team led by the doctor and supported by social workers and non-profit organizations,
provides equitable access to all families, and is recommended next.
Lack of access to viable service providers like English interpreters proved to be another
solid barrier for 40% of the families that had questions about new complex medical terms
associated with clinical trials. Noteworthy, another tangible barrier that did not significantly arise
was a lack of access to adequate medical insurance, which all ten families had at the time of time
of clinical trial participation likely due to insurance availability in the state of residence and their
residence status. A potential barrier may exist for U.S. Latino families who reside in states that

82
have more limited restrictions for accessing insurance if the children are recent immigrants or if
robust insurance programs are not available for families living under low socioeconomic
conditions.
Analysis of Research Question 3
Themes that emerged from participant responses to this research question included their
emotional shifts during the decision-making process, the integration of religiosity and science,
and how first-generation Latino cultural traits influenced their attitudes towards clinical trials.
Applying LatCrit theory facilitated a deeper understanding of Latino cultural beliefs, assuming
that the intensity of each trait might change with acculturation over time. Additionally, certain
values, such as the expression of sympathy, may remain consistently intense regardless of
whether someone is a recent immigrant or a first-generation or second-generation Latino.
All families described embarking on their decision-making journey concerning clinical
trials from a place of fear for the unknown, feeling like their child was in a state of limbo, and
experiencing a wide range of emotions, including fatalistic thoughts, anger, and eventually
resolution. A way to analyze this trajectory of emotions is by overlaying them to the seminal
work from psychologist Dr. Elisabeth Kübler-Ross, known as the Kübler-Ross (1969) change
model that proposed five different stages of grief including feelings of denial, anger, bargaining,
depression, and acceptance. In this study, denialism was a common reaction among families
coping with fear, suggesting the importance of recognizing shock through self-reflection and
self-compassion. Additionally, although not all families were religious, four out of the 10
described fatalistic views, aligning with literature that suggested approximately 46% of Englishspeaking Latinos in the United States share fatalistic beliefs (Ramirez et al., 2013). While this
study does not directly compare denialism with fatalism, the Kübler-Ross model underscores the

83
importance of internal self-alignment, maintaining self-efficacy, and acquiring information to
facilitate viable decision-making (Friedrich & Wüstenhagen, 2017; Ramirez et al., 2013).
The next significant phase for these families was questioning their faith in God and is
parallel to the Kübler-Ross stage of anger. In this research study, 30% of the families found
themselves leaving their church for some time upon learning that their child’s cancer would
require the need to consider a clinical trial. Another 20% of the participant families felt direct
anger with God before eventually attaining resolution. By applying the Kübler-Ross model,
potential countermeasures proven effective include sparking motivation, offering support, and
practicing encouragement through expressing sympathy, which is a recommendation for this
research study.
One of the ways these families managed to reach the ultimate decision to undergo the
clinical trial was by integrating the willingness to accept science and experimental research
without compromising their faith and religiosity. This research study found that 50% of the
families felt this way and that only three of the families did not participate in a clinical trial with
one of them reconsidering it at the time of the interview and another family expressing their child
did not meet inclusion criteria because of comorbidities. After undergoing extensive first-line
therapies, one family declined to participate in a clinical trial and chose alternative nonchemical
treatments instead. Despite uncertainty about participation, one family expressed openness to the
idea if their child ever needed it. Application of an acculturation lens suggests that the
rationalization of justifying both God and science is associated with embracing the American
culture of beliefs compared to the traditional Latino value of not interfering with God’s plan
(Bustillo et al., 2017; Ramirez et al., 2013). By integrating two dimensions, the Latino families

84
that participated in this study did not have reservations about clinical trials, influenced by their
acceptance of both God and science.
In addition to the cultural value of trust already discussed, I identified the additional
Latino cultural values of family, respect, and sympathy during the interviews, and these
constructs influenced these families’ views towards clinical trials. Applying a generational lens
enables correlating these first-generation parents to native Latinos, where a family member
serves as a surrogate for the parents back in the homeland. In countries with scarce resources in
local hospitals, family members provide around-the-clock assistance due to limited available
resources (Ko et al., 2022). In comparison, American families typically have more resources
available to them, leading to less concern about leaving a patient in the hands of medical
professionals for care. This perception is not innate to Latinos, as it is influenced by their home
country’s circumstances.
Respect was another Latino cultural value expressed by half the participants in this study
who viewed the doctor as a person of authority primarily due to their formal title and educational
level. In their originating culture, Latinos view respect as a belief that favors elders, males, and
authority figures, which persists in the United States through meritocratic ties where one’s
educational level tends to elevate their social status (Guajardo et al., 2020; Liu, 2011; Wiley et
al., 2012). The other half of the participants expressed doubt and mistrust toward the doctor,
particularly as they witnessed their children's worsening condition. These families demonstrated
persistence and challenged the status quo, defying both their traditional culture and acculturated
traits out of desperation and fear. Viewing trends through a generational lens, educational levels
among recently immigrated Latinos have been changing. In 2000, about 78% had less than a
high school degree, a figure that has decreased to 58% in 2021 (Haner & Lopez, 2023). As future

85
immigrants bring higher levels of educational attainment, they will be better prepared to navigate
the medical care system and advocate for their children.
Forty percent of participant families in this research study demonstrated the Latino
cultural trait of sympathy. Sympathy is a need to avoid interpersonal conflict through relationship
building and sharing experiences without fear of judgment (Guajardo et al., 2020). Sympathy
was the only cultural trait that endured consistently without change across acculturation and
generations as observed by the mothers in this research study who displayed these behaviors
consistent with the originating cultural definition (Ramirez-Esparza et al., 2008). The mothers
actively engaged in decision-making roles and utilized sympathy as a coping mechanism to
manage their mental health in highly stressful environments. Literature suggests that acculturated
Latinos, resembling the dominant culture, have higher incidence rates of mental health issues,
highlighting the importance of promoting the expression of sympathy (Ritt-Olson et al., 2018).
These findings underscore the need for further exploration and implementation in practice.
Recommendations for Practice
This section outlines recommendations to address the compounding and deleterious
effects of information gaps and sociocultural factors under low socioeconomic conditions on
U.S. Latino parents when deciding to participate in a clinical trial to help save their child’s life.
The recommendations are based on the central findings and focus on improving access to
information on clinical trials at the microsystem level, increasing equity of access to resources by
instituting a triadic team for better coordination of information dissemination at the mesosystem
level, and uplifting Latino families through consistent expression of sympathy across all stages
of acculturation at the macrosystem level, in line with the conceptual framework of this research.
I recommend creating guidelines on how to establish the triadic team and to generate training

86
content for volunteer mothers on the topic of sympathy. The target stakeholders for
implementing these recommendations include medical professionals, social workers, and
caregivers from non-profits and community-based organizations with expertise who have
established rapport with one another. Additionally, social workers are best suited to coordinate
the development of an implementation plan, ensuring that the triadic team, with the doctor
leading, collaboratively executes these recommendations until completion.
Recommendation 1: Certify Latino Translators
Language barriers and cultural insensitivity often impede effective communication
between medical professionals and families of pediatric cancer patients during critical decisionmaking. To address this challenge, hospitals should consider certifying volunteer Latino
translators and provide them with training on handling crucial conversations, including complex
medical terminology associated with clinical trials, expressing sympathy, and facilitating critical
decision-making. This study identified language barriers between translators and families in four
out of 10 cases, where translations inaccurately conveyed doctors’ explanations and families’
feelings. Existing literature suggests that Latinos may hesitate to share symptoms or conditions
with interpreters due to modesty (Seltz et al., 2011; Waters et al., 2022). Moreover, ineffective
communication with interpreters can foster mistrust between doctors and families, as interpreters
directly interact with the parents as translators for the doctors (Waters et al., 2022; Zamora et al.,
2016).
In 2012, the American Academy of Pediatrics published the Family Centered Rounds
model which included a recommendation to implement a standardized program for translators.
This recommendation is considered the standard of care in North America, but it is not currently
enforced as noted by Anttila et al. (2017). The premise of the Family Centered Rounds model is

87
that a team consisting of an attending physician, resident doctors, medical students, and nurses
conduct daily bedside visits that include family members in discussions of progress, prognosis,
and treatment options (Seltz et al., 2011). Integrating certified translators into this process is
feasible if hospital budgets accommodate the expense and coordinate these services during prescheduled hours.
During the implementation of this model, a Joint Commission of Congress cited Title VI
of the Civil Rights Act of 1964 and required health organizations that receive public funding to
provide adequate English services to LEP families (Diamond et al., 2010). Escobedo et al. (2022)
argue that there is no enforcement of standards of care and certification of language proficiency
for translators who should receive training to include understanding medical terminology enough
to communicate its meaning effectively and in the proper cultural context. Implementing
certification for translators and providing training on effectively involving families with lower
English proficiency would ensure that these families receive the same standard of care as
English-proficient parents and their children (Escobedo et al., 2022).
Recommendation 2: Creation of a Triadic Team Led by the Doctor
According to the findings of this study, only five of the 10 families felt that they received
enough information regarding clinical trials from their doctors and four of the 10 families had no
or limited engagement from their social worker who also serves as a resource. Latino parents
consistently express a lack of information and available resources in their native language during
critical stages of diagnosis and treatment phases impacting their child’s outcomes (Lopez et al.,
2022). The role of the social worker is to provide access to financial and psychosocial
information to families in their native language, as well as to hold clinicians accountable by
ensuring that they are informing parents of viable treatment options (Lopez et al., 2022). The

88
recommendation is to coordinate and deploy a triadic relationship between doctors, social
workers, and non-profit organizations.
This novel approach considers the doctor to serve as the leader of the triadic team and
requires them to implement the Family Centered Rounds model where the doctor selects team
members to participate in the daily discussions with the patient and families (Diamond et al.,
2010). The social worker propagates accountability mechanisms, ensuring the establishment of
common goals, the development of a communication plan, and the inclusion of viable resources
such as non-profit organizations. Further, formative assessments completed by members of the
team can identify opportunities for improvement, consistency, and quality of service. Integration
of communication with information coordinated by social workers, and prioritized by physicians,
while involving support systems like non-profit organizations through face-to-face meetings at
the time of diagnosis and throughout the patient’s clinical trial experience can improve their
outcomes (Schultz et al., 2021).
Recommendation 3: Mothers Offering Sympathy to Other Mothers
The final recommendation incorporates the Latino cultural trait of sympathy into the
implementation plan deployed by the triadic team. Sympathy, defined as the “need for smooth
interpersonal relationships,” plays a significant role for families considering clinical trials for
their children (Phillips & Jones, 2013, p. 40). The research study revealed that, while 40% of
participant families included paternal voices, it was predominantly the acculturated mothers who
took the lead in decision-making. A review of the literature suggests that mothers often seek
support from other mothers, engaging in conversations about fatalism and coping mechanisms
(Desai et al., 2016; Johns et al., 2009). In this study, four out of the 10 families sought emotional

89
support by receiving and expressing sympathy from other experienced mothers whose children
had undergone the clinical trial experience.
The proposed recommendation incorporates elements of the promotoras or Community
Health Worker model, which involves individuals serving as skilled advocates in the
communities, fostering individual leadership and transformative change (Lopez et al., 2022;
Wolfe et al., 2022). Promotoras lead a range of activities including outreach, community
education, informal counseling, and providing social support (Lopez et al., 2022; Wolfe et al.,
2022). Non-profits and community-based organizations should lead implementing this
recommendation by utilizing public health funds to support the creation of training materials,
facilitating training workshops for experienced mothers, and offering one on one coaching in
communication and confidence building. These learning initiatives ensure that mothers who
become promotoras will possess a wide range of skills, including cognitive coping mechanisms
such as reframing and positive thinking, which they can offer to parents going through the
process for the first time (John et al., 2009). These mothers will also increase their leadership
skills in outreaching through capacity building, advocating for others, and educating their
communities (Lopez et al., 2022; Wolfe et al., 2022).
Recommendations for Future Research
This research study included the voices of acculturated, first-generation Latino parents
faced with making a complex decision under difficult circumstances that presented barriers and
challenges for them. It has been observed that epidemiological paradox exists. To further this
research, it is recommended to replicate this study approach with unacculturated or recently
immigrated families. This will help to understand if similar patterns of challenges, barriers, and
influencers exist for other Latinos. This study did not detect any effects from medical insurance

90
status and from immigration because of being first-generation Latinos. Anticipating that recent
immigrants’ observations may vary thematically, it is worth analyzing these variations.
Obtaining the voices of unacculturated families would also help to understand the rationalization
process when justifying God and science as conditions may have changed in native countries
with technological advances and religious practices.
Limitations and Delimitations
It is important to highlight the limitations of this research study. There are upwards of 73
million Latinos within the United States today and the size of the sample limited this study.
Approximately 20% of the 16,000 cases of pediatric cancer diagnosed every year are Latino
patients that vary in generational and acculturation status (Aristizabal et al., 2015). This study
only focused on acculturated first-generation families.
There is a challenge in being able to generalize and make inferences of typical Latino
perspectives with such a small sampling of a relatively diverse community. Latino culture is
multi-ethnic and multi-racial and encompasses a broad group of people who are not monolithic
and are, therefore, not assumed to all share the same values, traditions, and beliefs (NoeBustamante et al., 2021). I chose a qualitative approach to gather as many vivid descriptions as
possible and build themes that answered the research questions. Happy Scribe accurately
transcribed participant's narratives in Spanish, verified through member checking.
There are a couple of delimitations to highlight. In this study, the type of cancer was not a
primary focus, nor were the typical steps for enrolling in a clinical trial. Instead, the focus was on
Latino parents, identifying information gaps, barriers, and cultural factors influencing their
decision-making process. Another delimitation for this study was the steps a cancer patient

91
typically follows to enroll in a clinical trial were also not as critical since the purpose of this
research was to explore their unique journey.
Conclusions
This research study examined the problem of inequitable access to clinical trial
information and how unique barriers and sociocultural factors influence decision-making in
clinical trial participation. What struck me the most is how many practical day-to-day challenges
exist and how many generational, at times insurmountable barriers stand in the way for
vulnerable populations of people that share my heritage and live within my community. This
process helped me appreciate my Latino heritage more. I became in love with my culture, my
traditions, my beliefs derived from my originating Mexico. I no longer take for granted being
born in the United States and for speaking English. I am proud to be able to experience both
sides of the spectrum in harmony. Latinos are the fastest growing population in the United
States, and they encompass a wide spectrum of racial and ethnic diversity that enriches the
American culture, but also exposes opportunities for creating more holistic and inclusive systems
Implementing practical solutions, already identified requiring consistent application can
significantly enable this vulnerable population to feel more like they belong and that the life of
their child matters equally as others in this country. Through education, the recognition of access
to information, understanding cultural sensitivity, and actively acknowledging the constant
blending of cultural traits is what defines the American belief system. Preserving this is vital if
democracy is to uphold values of diversity, equity, and inclusion.

92
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Appendix A: Recruitment E-mail Sent to Non-Profit Organizations
Dear Non-Profit X,
Greetings and thank you for creating such a fantastic forum for the community. I am a doctoral
student at the University of Southern California in Los Angeles and I have been approved by my
IRB to conduct a small qualitative research study. My study aims to improve the access of
cancer knowledge for our Latino communities in the United States from the perspective of
parents. We also seek to understand if there are socioeconomic factors and/or cultural influences
that may be impacting issues of equity and access to cancer therapies. By driving change
through community voices, my hope is that I can be a cancer advocate for our younger
generation and overcome this set of challenges together!
I would be interested in seeking support and guidance for how to go about finding Latino
families that may be able to participate in my study and help answer the research questions for
this study. Any information you may have would be extremely helpful as I launch this project. I
look forward to speaking with you! I can be reached at (XXX) XXX-XXXX or
at henrygar@usc.edu . I thank you kindly for reading this and for your valuable time.
With warm regards,
Henry Garcia

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Appendix B: Interview Protocol (English Version)
Respondent Type:
Interviews are with the Latino parents of children who were potential candidates for
participation in clinical trial research within the United States. Typically, patients consider
clinical trials as an option after trying approved therapies. Interview inclusion criteria are Latino
parents who considered having their child participate in clinical trial or had a child who became a
patient in a clinical trial.
Introduction to the Interview:
I thank you for taking the time today to speak with me today. My name is Henry Garcia, and I
am a graduate student at the University of Southern California. I am Latino, and I am studying
Latino pediatric patient participation in cancer clinical trial research.
I have some information to share with you, and I’m going to read it to make sure that I cover
everything.
I am conducting research with Latino parents who have considered participating in a clinical trial
for their child (or children). The purpose of my research is to understand what Latino parents,
like yourself, experience in choosing whether their child should participate in a cancer clinical
trial. I wanted to let you know that all the information you share today is confidential. This
means I use the information you provide on your experiences but I will never share your names,
child’s name, and any personal information. Everything is confidential. I will never share your
personal information at any point or in any way. [pause] Okay?
Your participation in this research is completely voluntary, and you may stop participating at any
time. I believe there is no risk to you or your family for participating in this study. All
information is on a password-protected computer to protect participants’ privacy, and no data is
stored outside my computer, and only available to me and faculty advisors. Do you have any
questions so far? [pause, smile, and wait for response] Okay, great. I will be asking some
questions, and our time together will be about 45 minutes to 1 hour. There is no incentive or
compensation for participating in this study. The results of this research may help improve the
value of clinical trial participation for other Latino families. As a Latino family, do you consent
to participate in this research study? [pause for response] Terrific, thank you.
To focus on our conversation and for accuracy, is it okay that I record our conversation? [turn on
the recorder or record button if online] Okay, thanks for your permission. Again, your responses
will remain completely anonymous.
The first thing I want you to know is that we’re studying the pediatric clinical trial process, not
you. You can’t do or say anything wrong here, [name]. In fact, this is probably the one place
today where you don’t have to worry about making mistakes or saying something incorrect.
[smile]

109
Also, please don’t worry that you’re going to hurt my feelings. I’m doing this to improve the
clinical trial process, so I need to hear your honest responses. Some questions I will ask of you
will seem basic. That’s okay. I’m trying to learn about you and your experiences.
Start the Interview:
The first set of questions help to get to know a little about you and your family.
Table B1
Demographic Information
Interview questions Potential probes RQ addressed Key concept
addressed
Preliminary Questions
(5-10 minutes)
1. To begin, tell me a little
bit about your family.
[pause]
2. How many kids do you
have? What are their
ages? [smile]
3. Have you always lived
here?
4. Do you have medical
insurance for you and
your family?
5. Describe your level of
experience in the
healthcare system. Are
you comfortable with
it?
1. That’s good to know. Tell me
more.
2. Can you tell me more about
that?
For Question 5: Learn if the family
was comfortable making
appointments, such as with the
primary care physician and
specialists, and using healthcare
services. If not comfortable, why
not?
When finished:
How nice. Thanks for helping me
get to know your family more.
[move to next area]
Demographics Microsystem
(Q1-Q3);
Exosystem
(Q4-Q5):
Insurance and
Healthcare

110
The next set of questions will help me to better understand the type of clinical trial you were
considering for your child.
Table B2
Research Question 1
Interview Questions Potential Probes RQ
Addressed
Key Concept
Addressed
RQ1. How do knowledge gaps in the Latino community moderate [influence] clinical trial participation
rates for pediatric cancer patients?
1. Who was the clinical
trial for?
2. How old was [name] at
the beginning of the
clinical trial?
3. What did you know
about enrolling in
clinical trials before
this experience?
4. What was the reason for
considering a clinical
trial?
1. Okay. Can you tell me more
about that?
2. How did your child handle it?
3. How did that work for your
family?
4. Was there more you wanted to
know?
5. If you chose not to participate,
why?
RQ1 Microsystem:
Discover
process
knowledge
6. What resources or tools
did you use to gather
more information about
the condition and about
the trial?
1. How confident did you feel that
the information you were
receiving was correct or
accurate?
2. Can you describe the people
who provided you with
information?
3. Explain what concerns you had,
if any.
RQ1 Mesosystem:
Parental
knowledge
acquisition
7. What types of questions
did you have as a
parent?
1. What type of information did
you receive from your child’s
doctor?
RQ1 Mesosystem:
Doctors
8. Tell me a little bit about
your interactions with
the doctors.
1. How did you feel about your
child’s doctors?
2. What were some of the things
that the doctors did well?
3. What were some of the things
that they didn’t do so well?
4. Did any of this influence your
decision to participate in a
clinical trial?
RQ1 Mesosystem:
Doctors

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In this next set of questions, let’s talk about some of the obstacles you may have encountered or
faced and how you dealt with them.
Table B3
Research Question 2
Interview Questions Potential Probes RQ
Addressed
Key Concept
Addressed
RQ2. What barriers do Latino parents face that affect their child’s participation in a clinical trial and
access to therapies?
9. Can you describe the
study protocol?
1. Were there many steps involved
in the protocol?
2. What were some of the
challenges with following the
directions of the protocol?
3. Were you confused at any point
in the enrollment process?
RQ2 Microsystem:
Parental
knowledge
10. What challenges did
you face with
participating in a
clinical trial and how
did you handle them?
1. If there were complicated
scientific terms used, how did
you work with that?
2. How did you feel about what
you and your family were going
through?
RQ2 Microsystem
& Exosystem:
Language
barriers and
coping
strategies
11. Can you describe if
there were any
specific challenges
related to your job and
if they supported you
to take time off work?
1. Can you tell me what would
happen if you requested time
off from work to be with your
child?
2. What were the sick leave policies
for you to care for your child?
RQ2 Exosystem:
Parental work
environment
12. Who did you lean on
and go to during your
decision-making
journey?
1. What about doctors?
2. What about the community,
neighbors, school, and church?
3. Describe who and how they
were a support system or a
barrier?
4. How did the family, if at all,
influence your decision
making?
5. How long did it take you to
decide?
RQ2 Mesosystem
&
Macrosystem:
Resources and
LatCrit
(sympathy
and family)

112
13. We talked about your
experience with the
doctors. Do you think
being Latino
influenced the way
you were treated?
1. Please help me understand why
you gave that answer. (Explain
answer)
2. What advice would you share
with parents in a similar
situation?
RQ2 Macrosystem
Okay. Thanks for giving me that feedback. [be excited and smile]
In this last set of questions, I want to talk about your beliefs, experiences, and opinions about the
clinical trial process.
Table B4
Research Question 3
Interview Questions Potential Probes RQ
Addressed
Key Concept
Addressed
RQ3. How do Latino customs and values shape the attitudes that Latino parents have towards clinical
trials for their child?
14. Do you consider
yourself as faith based,
and if so, how did faith
or religion influence
any of your decisionmaking to participate
or not, if at all?
1. Can you explain why you gave
that answer? (Tell me more.)
RQ3 Macrosystem:
Fatalism
15. Did you hear of
experiences from other
Latino families? If so,
could you describe
your thoughts on the
information available
for other Latino
families compared to
yours?
1. Has your perspective changed
over time on clinical trial
participation?
2. What were some of the
attitudes, beliefs, and opinions
based on Latino society that
guided your decisions?
3. Looking back, has your
experience changed the minds
of others around you in the
Latino society?
RQ3 Macrosystem:
Latino culture
Table B5
Miscellaneous
Interview Questions Potential Probes RQ
Addressed
Key Concept
Addressed
RQ1, RQ2, and RQ3. Last open-ended question.
16. Is there anything that
you would like to add
1. Any other thoughts you believe
might be relevant?
RQ1-RQ3 Anecdotes
beyond

113
that I might have
missed? Any closing
thoughts as we wrap
up our time together?
2. Any advice for other parents
about going through this
experience?
knowledge,
challenges,
and Latino
culture
Great job! Thank you for taking the time to be with me and providing such valuable information.
Conclusion to the Interview:
I appreciate the information that you have provided today. I know it is difficult to think back on
what must have been a very challenging time for you and for your family. I would like to leave
you my email address should you have anything more to add to your survey response. I will now
shut off the recording.
I want to thank you for your time today, and I wish all the best for you and your family.

114
Appendix C: Interview Protocol (Spanish Version)
Tipo de encuestado: (Tipo de personas a entrevistar)
Las entrevistas se llevan a cabo con los padres latinos de niños que eran candidatos
potenciales para participar en la investigación de ensayos clínicos dentro de los Estados Unidos.
Por lo general, los pacientes consideran los ensayos clínicos como una opción después de probar
las terapias aprobadas. Los criterios de inclusión de la entrevista son los padres latinos que
consideraron que su hijo participara en un ensayo clínico o que tuvieron un hijo que se convirtió
en paciente de un ensayo clínico.
Introducción a la entrevista:
Les agradezco que se hayan tomado el tiempo de hablar conmigo hoy. Mi nombre es Henry
García y soy estudiante de posgrado en la Universidad del Sur de California. Soy latino y estoy
estudiando la participación de pacientes pediátricos latinos en la investigación de ensayos
clínicos sobre el cáncer.
Tengo algo de información para compartir con ustedes, y voy a leerla para asegurarme de que
cubro todo.
Estoy llevando a cabo una investigación con padres latinos que han considerado participar en un
ensayo clínico para su hijo (o hijos). El propósito de mi investigación es entender lo que los
padres latinos, como usted, experimentan al elegir si su hijo debe participar en un ensayo clínico
sobre el cáncer. Quería hacerles saber que toda la información que comparten hoy es
confidencial. Esto significa que utilizamos la información que nos proporciona sobre sus
experiencias, pero sus nombres, el nombre de su hijo y cualquier información personal nunca se
compartirán ni se conocerán. Todo es confidencial. Nunca compartiré su información personal en
ningún momento ni de ninguna manera. [pausa] ¿Bien?
Su participación en esta investigación es completamente voluntaria y puede dejar de participar en
cualquier momento. Creo que no hay ningún riesgo para usted o su familia por participar en este
estudio. Toda la información está en una computadora protegida con contraseña para proteger la
privacidad de los participantes, y no se almacenan datos fuera de mi computadora, y solo están
disponibles para mí y los asesores de la facultad. ¿Tienes alguna duda hasta ahora? [pausa, sonríe
y espera la respuesta] Está bien, genial. Haré algunas preguntas y nuestro tiempo juntos será de
aproximadamente 45 minutos a 1 hora. No hay ningún incentivo o compensación por participar
en este estudio. Los resultados de esta investigación pueden ayudar a mejorar el valor de la
participación en ensayos clínicos para otras familias latinas. Como familia latina, ¿acepta
participar en este estudio de investigación? [pausa para responder] Estupendo, gracias.
Empecemos.
Para centrarnos en nuestra conversación y para mayor precisión, ¿está bien que grabe nuestra
conversación? [encienda la grabadora o el botón de grabación si está en línea] Bien, gracias por
su permiso. Una vez más, sus respuestas permanecerán completamente anónimas y se utilizarán
con fines de investigación.

115
Lo primero que quiero que sepan es que estamos estudiando el proceso de los ensayos clínicos
pediátricos, no ustedes. No puedes hacer ni decir nada malo aquí, [nombre]. De hecho, este es
probablemente el único lugar hoy en día donde no tienes que preocuparte por cometer errores o
decir algo incorrecto. [sonríe]
Además, por favor, no te preocupes de que vas a herir mis sentimientos. Estoy haciendo esto
para mejorar el proceso de los ensayos clínicos, por lo que necesito escuchar sus respuestas
honestas. Algunas preguntas que te haré te parecerán básicas. Está bien. Estoy tratando de
aprender sobre ti y tus experiencias.
Comienza la entrevista:
El primer conjunto de preguntas ayuda a conocer un poco sobre usted y su familia.
Tabla C1
Información Demográfica
Preguntas de la entrevista Sondas de potencial RQ abordado
Concepto
clave
abordado
Cuestiones preliminares
(5-10 minutos)
1. Para empezar,
cuéntame un poco
sobre tu familia.
[pausa]
2. ¿Cuántos hijos tienes?
¿Cuáles son sus
edades? [sonríe]
3. ¿Siempre has vivido
aquí?
4. ¿Tiene seguro médico
para usted y su familia?
5. Describa su nivel de
experiencia en el
sistema de salud. ¿Te
sientes cómodo con él?
1. Es bueno saberlo. Cuéntame
más.
2. ¿Puedes contarme más sobre
eso?
Para la pregunta 5: Averigüe si la
familia se sintió cómoda haciendo
citas, como con el médico de
atención primaria y los
especialistas, y utilizando los
servicios de atención médica. Si
no es cómodo, ¿por qué no?
Al terminar:
Qué bonito. Gracias por ayudarme
a conocer más a tu familia. [pasar
a la siguiente área]
Demografía Microsistema
(Q1-Q3);
Exosistema
(Q4-Q5):
Seguros y
atención
médica

116
El siguiente conjunto de preguntas me ayudará a comprender mejor el tipo de ensayo clínico que
estaba considerando para su hijo.
Tabla C2
Pregunta de Investigación 1
Preguntas de la entrevista Posibles sondas RQ Abordado
Concepto
clave
abordado
PI1. ¿De qué manera las brechas de conocimiento en la comunidad latina moderan [influyen] en las tasas
de participación en ensayos clínicos de pacientes pediátricos con cáncer?
1. ¿A quién iba dirigido el
ensayo clínico?
2. ¿Qué edad tenía
[nombre] al inicio del
ensayo clínico?
3. ¿Qué sabía sobre la
inscripción en ensayos
clínicos antes de esta
experiencia?
4. ¿Cuál fue la razón para
considerar un ensayo
clínico?
5. En el momento en que
se enteró por primera
vez de esta
oportunidad, ¿puede
describir su nivel de
conocimiento de la
enfermedad?
1. Bien. ¿Puedes contarme más
sobre eso?
2. ¿Cómo lo manejó su hijo?
3. ¿Cómo funcionó eso para tu
familia?
4. ¿Había algo más que quisieras
saber?
5. Si decidiste no participar, ¿por
qué?
RQ1 Microsistema:
Descubra el
conocimiento
del proceso
6. ¿Qué recursos o
herramientas utilizó
para recopilar más
información sobre la
afección y sobre el
ensayo?
1. ¿Qué tan seguro se sentía de que
la información que estaba
recibiendo era correcta o
precisa?
2. ¿Puede describir a las personas
que le proporcionaron
información?
3. Explique qué preocupaciones
tenía, si las tenía.
RQ1 Mesosistema:
Adquisición
de
conocimiento
parentales
7. ¿Qué tipo de preguntas
tenías como padre?
1. ¿Qué tipo de información
recibió del médico de su hijo?
RQ1 Mesosistema:
Doctores
8. Cuéntame un poco
sobre tus interacciones
con los médicos.
1. ¿Cómo se sintió con respecto a
los médicos de su hijo?
2. ¿Cuáles fueron algunas de las
cosas que los médicos hicieron
bien?
RQ1 Mesosistema:
Doctores

117
3. ¿Cuáles fueron algunas de las
cosas que no hicieron tan bien?
4. ¿Algo de esto influyó en su
decisión de participar en un
ensayo clínico?
En el siguiente conjunto de preguntas, hablemos de algunos de los obstáculos que puede haber
encontrado o enfrentado y cómo los enfrentó.
Tabla C3
Pregunta de Investigación 2
Preguntas de la entrevista Posibles sondas RQ Abordado
Concepto
clave
abordado
PI2. ¿Qué barreras enfrentan los padres latinos que afectan la participación de sus hijos en un ensayo
clínico y el acceso a las terapias?
9. ¿Puede describir el
protocolo del estudio?
1. ¿Hubo muchos pasos
involucrados en el protocolo?
2. ¿Cuáles fueron algunos de los
desafíos de seguir las
instrucciones del protocolo?
3. ¿Estuvo confundido en algún
momento del proceso de
inscripción?
RQ2 Microsistema:
Conocimiento
parental
10.¿A qué desafíos se
enfrentó al participar
en un ensayo clínico y
cómo los manejó ?
1. Si se usaron términos científicos
complicados, ¿cómo trabajaste
con eso?
2. ¿Cómo te sentiste acerca de lo
que tú y tu familia estaban
pasando?
RQ2 Microsistema
y exosistema:
Barreras
lingüísticas y
estrategias de
afrontamiento
11. ¿Puede describir si
hubo algún desafío
específico relacionado
con tu trabajo y si te
ayudaron a tomarte un
tiempo libre en el
trabajo?
1. ¿Puede decirme qué pasaría si
solicitara tiempo libre en el
trabajo para estar con su hijo?
2. ¿Cuáles fueron las políticas de
licencia por enfermedad para
que usted cuide a su hijo?
RQ2 Exosistema:
Entorno de
trabajo de los
padres

118
12. ¿En quién te apoyaste
y a quién acudiste
durante tu proceso de
toma de decisiones?
1. ¿Y los médicos?
2. ¿Qué pasa con la
comunidad, los vecinos, la escuela
y la iglesia?
3. Describa quiénes y cómo
eran un sistema de apoyo o una
barrera.
4. ¿Cómo influyó la familia,
si es que influyó, en su toma de
decisiones?
5. ¿Cuánto tiempo tardaste en
decidirte?
RQ2 Mesosistema
y
Macrosistema
: Recursos y
LatCrit
(simpatía y
familia)
13. Hablamos de tu
experiencia con los
médicos. ¿Crees que
ser latino influyó en la
forma en que te
trataron?
1. Por favor, ayúdame a entender
por qué diste esa respuesta.
(Explique la respuesta)
2. ¿Qué consejo le darías a los
padres que se encuentran en una
situación similar?
RQ2 Macrosistema
Bien. Gracias por darme ese comentario. [emociónate y sonríe]
En este último conjunto de preguntas, quiero hablar sobre sus creencias, experiencias y opiniones
sobre el proceso de ensayo clínico.
Tabla C4
Pregunta de Investigación 3
Preguntas de la entrevista Posibles sondas RQ Abordado
Concepto
clave
abordado
RQ3. ¿De qué manera las costumbres y los valores latinos moldean las actitudes que los padres latinos
tienen hacia los ensayos clínicos para sus hijos?
14. ¿Te consideras a ti
mismo como una
persona basada en la fe
y, de ser así, cómo
influyó la fe o la
religión en tu decisión
de participar o no, si es
que lo hicieron?
1. ¿Puede explicar por qué dio esa
respuesta? (Cuéntame más.)
RQ3 Macrosistema
: Fatalismo
15. ¿Has oído hablar de
experiencias de otras
familias latinas? Si es
así, ¿podría describir
sus pensamientos
sobre la información
disponible para otras
familias latinas en
1. ¿Ha cambiado su perspectiva
con el tiempo sobre la
participación en ensayos
clínicos?
2. ¿Cuáles fueron algunas de las
actitudes, creencias y opiniones
basadas en la sociedad latina
que guiaron sus decisiones?
RQ3 Macrosistema
: Cultura
latina

119
comparación con la
suya?
3. Mirando hacia atrás, ¿su
experiencia ha cambiado la
opinión de otras personas a su
alrededor en la sociedad latina?
Tabla C5
Pregunta Adicional
Preguntas de la entrevista Posibles sondas RQ Abordado
Concepto
clave
abordado
RQ1, RQ2, and RQ3. Última pregunta abierta.
16. ¿Hay algo que te
gustaría añadir que
pueda haber pasado
por alto? ¿Alguna
reflexión final
mientras terminamos
nuestro tiempo juntos?
1. ¿Alguna otra idea que creas que
podría ser relevante?
2. ¿Algún consejo para otros
padres sobre cómo pasar por
esta experiencia?
RQ1-RQ3 Anécdotas
más allá del
conocimiento,
los retos y la
cultura latina
¡Buen trabajo! Gracias por tomarse el tiempo de estar conmigo y proporcionarme información
tan valiosa.
Conclusión de la entrevista:
La información que nos ha proporcionado hoy ha sido muy apreciada. Sé que es difícil pensar en
lo que debe haber sido un momento muy difícil para ti y para tu familia. Me gustaría dejarle mi
dirección de correo electrónico en caso de que tenga algo más que agregar a su respuesta a la
encuesta. Ahora apagaré la grabación.
Quiero agradecerte por tu tiempo hoy le deseo todo lo mejor para usted y su familia.

120
Appendix D: USC Information Sheet for Exempt Research
My name is Henry Garcia, and I am a student at the University of Southern California. I have no
relationship with the research site and/or with potential participants.
I am conducting a research study on the underrepresentation of Latino pediatric patients in
clinical studies/medical research within the United States. The name of this research study is “Si
Se Puede in the Modern Era: Beating the Odds of Underrepresentation for Latino Children in
Cancer Clinical Trials.” I am seeking your participation in this study.
Your participation is completely voluntary, and I will address your questions or concerns at any
point before or during the study.
You may be eligible to participate in this study if you meet the following criteria:
1. The participant considers themselves to be Latino/Latina.
2. The participant lives in the United States. Your immigration status (e.g., citizenship,
resident, foreign-born) will not be verified.
3. The participant must be the parent/legal caregiver of a child who was born in the United
States AND diagnosed with any type of cancer AND offered to participate in clinical
trial/medical research to treat their cancer.
4. The participant should be able to read and write in either English or Spanish.
5. The participant should be able to read this information sheet and know if they are eligible
for this study.
6. The participant is over 18 years old. Your child will not be interviewed.
If you decide to participate in this study, I am asking you to do the following activities:
1. If selected, confirm a location, date/time at the participant’s convenience to meet with
me. We can use a virtual platform although I prefer in-person participation.
2. Participate in a 1:1 in-person or online interview within an online video calling platform
for no more than 60 minutes.
I will publish the results in a presentation and within a dissertation. Your private data will not be
revealed in the results. I will take reasonable measures to protect the security of all your personal
information. All data will be de-identified prior to any publication or presentations. I may share
your data, de-identified with other researchers in the future.
If you have any questions about this study, please contact me: henrygar@usc.edu and/or at (415)
349-9225. 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
hrpp@usc.edu.

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Asset Metadata

Creator Garcia, Henry (author)

Core Title Si se puede in the modern era: Latino children beating the odds of underrepresentation in cancer clinical trials

School Rossier School of Education

Degree Doctor of Education

Degree Program Organizational Change and Leadership (On Line)

Degree Conferral Date 2024-05

Publication Date 05/01/2024

Defense Date 04/02/2024

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

Tag acculturation,cancer,Children,Communication,information gaps,language barriers,limited English proficiency,OAI-PMH Harvest,Sympathy,trust

Format theses (aat)

Language English

Contributor Electronically uploaded by the author (provenance)

Advisor Ott, Maria (committee chair), Mora-Flores, Eugenia (committee member), Pritchard, Marcus (committee member)

Creator Email henry.garcia@gmail.com,henrygar@usc.edu

Permanent Link (DOI) https://doi.org/10.25549/usctheses-oUC113912116

Unique identifier UC113912116

Identifier etd-GarciaHenr-12879.pdf (filename)

Legacy Identifier etd-GarciaHenr-12879

Document Type Dissertation

Format theses (aat)

Rights Garcia, Henry

Internet Media Type application/pdf

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Source 20240503-usctheses-batch-1147 (batch), University of Southern California (contributing entity), University of Southern California Dissertations and Theses (collection)

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