THE EFFECT OF ACCULTURATION ON THE UTILIZATION OF SUPPORT
SERVICES BY PARENTS OF PEDIATRIC ONCOLOGY PATIENTS
Mariela Morales Magnan
B.A., University of California, Davis, 2003
PROJECT
Submitted in partial satisfaction of
the requirements for the degree of
MASTER OF SOCIAL WORK
at
CALIFORNIA STATE UNIVERSITY, SACRAMENTO
SPRING
2011
THE EFFECT OF ACCULTURATION ON THE UTILIZATION OF SUPPORT
SERVICES BY PARENTS OF PEDIATRIC ONCOLOGY PATIENTS
A Project
by
Mariela Morales Magnan
Approved by:
__________________________________, Committee Chair
Maria Dinis, Ph.D., M.S.W.
Date
ii
Student: Mariela Morales Magnan
I certify that this student has met the requirements for format contained in the University
format manual, and that this project is suitable for shelving in the Library and credit is to
be awarded for the project.
, Graduate Coordinator
Teiahsha Bankhead, Ph.D., L.C.S.W.
Date
Division of Social Work
iii
Abstract
of
THE EFFECT OF ACCULTURATION ON THE UTILIZATION OF SUPPORT
SERVICES BY PARENTS OF PEDIATRIC ONCOLOGY PATIENTS
by
Mariela Morales Magnan
The purpose of this study was to determine if acculturation affects the likelihood that
Latino parents make use of support services for their sick child and their family during
the treatment of childhood cancer. A quantitative mix-methods design was used in this
study: qualitative content analysis interview and a quantitative survey research design. A
purposive sampling method of 10 Latino parents of pediatric oncology patients
participated in this study. Parents with a low level acculturation are more likely to
hesitate or not to utilize supportive services for their family or sick child. Respondents,
despite their high or low acculturation, revealed commonalities among the reason
preventing them from utilizing support services. Language barriers, migratory status, and
a strong work ethic—not wanting to accept "hand-outs"—were found to play a prominent
role in delaying or preventing parents from using supportive services for their families
and for themselves.
Implications for social work practice relative to this study are
explored. The need for future research is also discussed.
__________________________________, Committee Chair
Maria Dinis, Ph.D., M.S.W.
____________________________
Date
iv
DEDICATION
I would like to dedicate this project to my husband, David Magnan, and my
mother, Maria Luz Morales. David, I love you so very much. Your love and support has
encouraged me to always pursue and fulfill my dreams. You have cheered me on and
gave me strength when I was unsure I could finish. You have inspired me to continue on
during these trying times, I look up to you. Together with God, we made it.
Mami, te dedico este proyecto. Te doy las gracias por siempre haberme inculcado
la importancia de la educación y de hecharle todas las ganas a la vida. Gacias por
siempre recordarme a encomendarme a Dios. Gracias Mami por inspirarme y por
siempre poder contar contigo. Te quiero mucho, Mami.
v
ACKNOWLEDGMENTS
I am very grateful with God for having given me the opportunity and strength to
come this far in my life and education. I am also thankful to God for surrounding me
with so many special people who love and support me.
This project would have not been a success without the devoted mothers who
volunteered to participate in the study. I appreciated their openness and their desire to
help other parents in their same situation. Their stories narrated a mother's unconditional
love to her children.
I would like to express my sincere appreciation to my thesis advisor, Maria Dinis,
Ph.D. I have been exceedingly impressed by her dedication in assisting and supporting
me. The speed of her responses, the depth of her feedback, and her determination to see
me succeed will always be remembered and appreciated.
This journey was not undertaken alone and could have not been embarked upon,
let alone completed, without my family and friends. I am very appreciative of my
husband (David), mother (Mami), my in-laws (Mom and Dad), and my friends for their
continuous support and encouragement while I pursued my Master's degree and
throughout my education. Thank you for all the pep talks, love, and care, especially
throughout this last year. Finally, a special thanks to my amazing husband for his help
with proofing and editing my work.
vi
TABLE OF CONTENTS
Page
Dedication ...........................................................................................................................v
Acknowledgments.............................................................................................................. vi
List of Tables ................................................................................................................... xiv
Chapter
1. THE PROBLEM .............................................................................................................1
Introduction ..............................................................................................................1
Background of the Problem .....................................................................................2
Statement of the Research Problem .........................................................................4
Purpose of the Study ................................................................................................4
Research Question ...................................................................................................5
Theoretical Framework ............................................................................................5
Application of Bicultural Socialization ...................................................................7
Definition of Terms..................................................................................................8
Assumptions.............................................................................................................9
Justification ..............................................................................................................9
Limitations .............................................................................................................10
Summary ................................................................................................................11
2. REVIEW OF THE LITERATURE ...............................................................................12
Introduction ............................................................................................................12
vii
Historical Background ...........................................................................................12
Measurements of Acculturation for Hispanics ......................................................17
Acculturation for Hispanics in the United States ...................................................18
Acculturation and Use of Health Care by Hispanics in the United States .............26
Types of Support Resources Offered at a Pediatric Oncology
Clinic in California ................................................................................................27
Gaps in the Literature.............................................................................................31
Summary ................................................................................................................34
3. METHODOLOGY ........................................................................................................35
Research Question .................................................................................................35
Study Design ..........................................................................................................35
Variables ................................................................................................................41
Study Population ....................................................................................................42
Sample Population .................................................................................................43
Instrumentation ......................................................................................................44
Data Gathering Procedures ....................................................................................49
Data Analysis .........................................................................................................50
Protection of Human Subjects ...............................................................................51
Summary ................................................................................................................52
4. DATA ANALYSIS .......................................................................................................53
Language Barrier ...................................................................................................56
Migratory Status.....................................................................................................65
viii
Strong Work Ethic .................................................................................................69
Summary ................................................................................................................73
5. CONCLUSIONS AND RECOMMENDATIONS ........................................................74
Conclusions ............................................................................................................74
Recommendations ..................................................................................................78
Limitations .............................................................................................................80
Implications for Social Work Practice and Policy .................................................81
Conclusion .............................................................................................................83
Appendix A. Questionnaire and Interview Questions (English version) ...........................85
Appendix B. Questionnaire and Interview Questions (Spanish version) ..........................89
Appendix C. Letter of Support...........................................................................................93
Appendix D. Consent to Participate in Research (English version) ..................................94
Appendix E. Consentimiento para participar en la investigación (Spanish version) .........96
References ..........................................................................................................................99
ix
LIST OF TABLES
Page
1.
Table 1 Respondents by Level of Acculturation....................................................55
x
1
Chapter 1
THE PROBLEM
Introduction
When a child is diagnosed with a life-threatening disease one assumes that
applying for support services is a natural instinct for parents. However, it is possible this
may not always be true, depending on the parents’ acculturation process (Marin, 1993).
The author became interested in the effect of acculturation on the use of medical support
services among Latinos at a pediatric oncology clinic through work experience. The
author observed that not all Latino parents reacted the same when it came to applying for,
pursuing, or accepting support services for their ill child and family when these were
offered. The author could not help but notice that despite all parents being born in a
Spanish-speaking country and being offered the same services their response was not the
same. That is, while medical support services exist to alleviate some of the financial,
physical, and emotional burdens chronic diseases like cancer can generate, not all Latino
parents welcome aid in the same way. This discrepancy among Latino parents as to how
they perceive medical support services is in need of further study to be able to provide
complete service for a sick child and a family in need (Lauria, Clark, Hermann, &
Stearns, 2001). The author’s findings will contribute to the ethical practice of social
work by upholding the commitment to serve and promote the well being of clients.
Additionally, as the author believes this work to be the first of its kind, the work will add
a unique response to an (as yet) unanswered question.
2
Background of the Problem
About one out of every 330 children under the age of 20 develop cancer
(American Cancer Society, 2010a). There is a lot of research being conducted to
discover new treatments for childhood cancer; consequently, this ongoing research will
continue to greatly improve the overall survival rate for children with cancer, which is
currently 80%. In 2010, it was estimated that 10,700 children younger than fourteen
were diagnosed with cancer in the United States. It is estimated that 1,340 children died
due to childhood cancer in 2010. Since 1975, the number of deaths from childhood
cancer has decreased by 55% (American Cancer Society, 2010a). Still, many children
diagnosed today face a potentially fatal outcome and nearly all experience side effects of
therapy (Stearns et al., 1993).
According to the U.S. Census Bureau, 50.5 million American, or 16% of the total
US population, identified themselves as Hispanic or Latino in 2010. Hispanics are the
largest, and fastest growing, and youngest minority group (U.S. Census Bureau, 2010). It
is estimated that about 2,300 Hispanic children in the U.S., ages 0-14 years, were
diagnosed with cancer in 2009, accounting for about 2.3% of the total 2009 cancer cases
in Hispanics. Childhood cancer accounts for 0.7% of new cancer cases in the US
population. The difference arises in part due to Hispanic population being younger –
children account for almost 34% of the US Hispanic population compared to 25% of the
total U.S. population (American Cancer Society, 2009).
3
Childhood cancer is the second-leading cause of death among Hispanic children,
ages 0-14 years, and the fourth-leading cause of death among adolescents age 15-19
years. It is estimated that 400 Hispanic children died from cancer in 2009 (American
Cancer Society, 2009). The diagnosis of cancer is a universally feared phenomenon due
to its associated risk of mortality and the potential impact the disease can have in all areas
of life. Current therapies for childhood cancer have resulted in improved survival rates.
This achievement has been attained at considerable price to families with financial costs,
including additional expenditures and loss of earning due to loss of work (Eiser & Upton,
2006). Research since the 1970s supports the belief that significant levels of distress are
found among patients and their families facing cancer, and that the disease can have
immediate and long-term emotional, psychosocial, behavioral and financial consequences
(Eiser & Upton, 2006; Kornblith et al., 1992).
According to A Profile of Children with Disabilities Receiving SSI: Highlights
from the National Survey of SSI Children and Families (U.S. Social Security
Administration, 2006). Hispanic children 0-17 years of age, and receiving support from
the Supplemental Security Income (SSI) program because of a disability, represent an
estimated 16.3% of the overall SSI child population. The U.S. Census Bureau reports
that Hispanics are the country's largest and fastest growing minority at 50.5 million,
representing about 16% of the estimated total U.S. population in 2010 (U.S. Census
Bureau, 2010). At this point, the author questions what effect acculturation has on the
16.3% group. The author wishes to examine if the acculturation of Hispanic parents
4
affects the likelihood of them applying for and using support services, such as SSI,
psychosocial and other financial support programs for their disabled child and their
family.
Statement of the Research Problem
Childhood cancer is emotionally, physically, and financially demanding on the
entire family. The range of responses to the disease can affect coping in multiple
domains such as school performance for the child, work productivity for the parents, and
emotional functioning for all family members. Fortunately, the negative impact of the
illness can often be minimized through support services designed to meet the unique
psychosocial and financial needs of the patient and the family. Can acculturation affect
the likelihood that Latino parents will apply for and make use of services offered to a
pediatric oncology patient and his or her family? This discrepancy among Latino parents
as to how they perceive medical support services is in need of further study to be able to
provide complete service for a sick child and a family in need.
Purpose of the Study
The author’s objective is to determine if acculturation affects the likelihood that
Latino parents make use of support services for their sick/disabled child and their family
during the treatment of childhood cancer. The author will accomplish this by conducting
her research at a pediatric oncology clinic. The author measured acculturation levels
amongst Hispanic parents of pediatric oncology patients, and compare and contrast the
experiences of those parents whose children are undergoing oncology treatment and their
5
decision to use support services for their family. There is a need to find out what causes
some Latino parents to apply and accept supportive services for their sick child and their
families, while other Latino parents hesitate or even decline these same support services.
The findings of this study will inform social workers who work with Hispanic families in
a pediatric oncology setting the influence of acculturation on Hispanic parents and their
choice in applying for and using support services intended for pediatric oncology patients
and their families.
Research Question
This study examines the following research question. Does acculturation affect
the likelihood that Latino parents of pediatric oncology patients make use of support
services offered to patients and their families at a pediatric oncology clinic?
Theoretical Framework
Historically, bicultural socialization was viewed as contributing to a culturally
diffuse identity –I am neither my culture of origin or fully culturally assimilated, thus I
am culturally marginalized (Robins, Chatterjee, & Canda, 1998). New perspectives on
the bicultural socialization theory suggest that a bicultural socialization process may take
place and that the mastery of both cultures can be achieved (Robins et al., 1998).
According to Robins et al., a person who gains bicultural competency “integrates positive
qualities of his/her culture of origin and the dominant society’s culture. The outcome is a
functional way of relating and surviving in both cultures” (p. 128).
6
In understanding bicultural socialization, it is important to understand the
relationship between bicultural conflict and bicultural tension. Bicultural conflict takes
place when a person’s family values and behaviors are different from those of the society
at large. Consequently, there is a high level of "incongruence or contrast between family
values and societal values” (Robins et al., 1998, p. 129). According to Robins et al., in
order to be able to function in both mainstream and minority contexts, ethnic minorities
have to develop coping skills in both contexts to guide them to adapt to both sets of
demands. However, if a person is unable to develop these coping skills the person is
likely to experience bicultural tension.
Bicultural tension is said to occur when “an individual’s available coping skills
are based on only one value system: either that of the family or that of society. The
individual is not able to use his or her coping skills in both family and societal situations”
(Robins et al., 1998, p. 129). As a result, the outcome is fragile coping skills for the
implementation in both cultures. Robins et al. state that bicultural conflict is a fact of life
while bicultural tension is not.
According to bicultural socialization theory the process of acculturation can occur
and the mastery of both cultures can be achieved. Yet, this mastery depends on an
individual’s ability to develop a coping repertoire that is adequate to deal with bicultural
conflict. Robins et al. (1998) explain that developing adequate coping skills is not only a
matter of personal choice; this also depends on the “degree of support or rejection
experienced from the culture of origin and the new cultural context” (p. 129).
7
Application of Bicultural Socialization
Using the bicultural socialization framework, the manner in which Latino parents
perceive support services in a pediatric oncology clinic will depend on their success
dealing with bicultural conflict and their experience with bicultural tension. If Latino
parents have been able to develop coping skills that allow them to function in both the
majority and minority cultural contexts, these parents might be more open to applying
for, pursuing, and accepting support services for their sick child and family. However, if
Latino parents have not been able to develop adequate coping skills to help them adapt to
the demands of both cultures, their fear, confusion, distrust, and other motives may keep
a sick child and his or her family from obtaining beneficial aid.
An example of bicultural tension is the language barrier. The inability to
communicate in the majority language, in this case English, begins as a bicultural conflict
that can become a bicultural tension. The majority of the support services are offered via
paperwork written in English. Therefore, parents who do not speak English: (1) may not
fully understand what is being offered; (2) may believe accepting the benefit imposes an
obligation; and/or (3) because they are experiencing this cultural tension, may be too
embarrassed to seek clarification. Consequently, this bicultural tension, due to a
language barrier, has the strong potential to be a barrier to receiving support during a
critical time of need.
8
Definition of Terms
The following terms are used throughout this project and are relevant to the
discussion of the affect of acculturation on Latino parents and their utilization of support
services offered at a pediatric oncology clinic.
Acculturation
"the process of adopting the cultural traits or social patterns of another group, esp.
a dominant one" (Random House Webster's Dictionary, 1997, p. 10).
Biculturalism
"the presence of two different cultures in the same region" (Random House
Webster's Dictionary, 1997, p. 128).
Hispanic
Hispanic "of or pertaining to Spain or Spanish-speaking countries" (Random
House Webster's Dictionary, 1997, p. 617).
Latino
"Hispanic" (Random House Webster's Dictionary, 1997, p. 741).
For the purposes of this research, the terms Latino and Hispanic will be used
interchangeably without preference or prejudice. This is primarily because while most
studies use either one term or the other, they almost universally employ the same
definition of the population regardless of the term used. All participants are parents of
children diagnosed with cancer. All participants were born outside the United States. All
participants’ primary language is Spanish.
9
Assumptions
The author makes the following assumptions: 1) acculturation is relatable to use
of services to begin with; 2) there are no significantly intervening factors which may also
affect use of services; 3) variations in measurements of acculturation standards are
significant (this may affect the outcomes of the work); and 4) participants are the experts
in defining and describing their own experiences.
Justification
The ethical principles outlined in the National Association of Social Workers
(NASW) make it clear that this study is in accord with the goals of social work practice,
as "Social workers' primary goal is to help people in need and to address social problems"
(NASW, 2006, p. 5). This study puts into practice the mission of social work as it
elevates service to others above self-interest. This study addresses the need to understand
the Latino clients we serve. If social workers truly wish to assist their clients in accessing
support services that will not only greatly benefit the sick child, but also the child's
family, social workers must know how to approach and work with Latino parents.
Therefore, being aware of the influence of acculturation on these parents is crucial in
order to be able to help those in need during an emotionally, physically, and financially
demanding time on the entire family.
Social workers have ethical responsibilities to their clients; one aspect of this is
the commitment to their clients (NASW, 2006). According to NASW’s Code of Ethics
“a social worker’s primary responsibility is to promote the well being of clients” (p. 7).
10
Consequently, in order for social workers to promote the well being of their clients, they
must know the effect acculturation has on the way Latino parents perceive support
services. It is especially important when it is the parents’ actions that will determine if
the sick children and their families will have access to benefits during a trying time.
The NASW Code of Ethics (2006) states that social workers have the
responsibility to be culturally competent and socially diverse. Furthermore, “social
workers should understand culture and function in human behavior and society,
recognizing the strengths that exist in all cultures” (p. 9). Therefore, when social workers
work with Hispanic families they should be aware of the effect acculturation has in
making choices so that they can more appropriately approach and work with Latino
parents.
Limitations
Quantitative data was not used to explore if the level of acculturation effects
Latinos parents of pediatric oncology patients in applying for, pursuing, or accepting
support services for their ill child and family when these were offered. The data gathered
is limited to a small number of participants who have a child receiving treatment at
Northern California Children's Hematology and Oncology Medical Group, Sacramento
clinic pediatric oncology clinic. Therefore, study results cannot be generalized to a
general clinic pediatric oncology population.
11
Summary
In this section, the author discussed the background of the problem, the statement
of the research problem, the purpose of the study, the theoretical framework, the
definition of terms, the assumptions, the justification, and the limitations of this study. In
Chapter 2, a review of the literature will be presented on the following thematic areas:
historical background of acculturation; formulations that currently exist to measure an
individual’s acculturation level; acculturation for Hispanics in the United States; Hispanic
health related to acculturation; and the support resources pediatric oncology patients and
their families have at their disposal. Gaps in the literature will be addressed. Chapter 3
will include a description of the theory and how it applies to the study. In Chapter 4, the
data analysis will be presented. Finally, in Chapter 5, conclusions and implications of the
study will be discussed.
12
Chapter 2
REVIEW OF THE LITERATURE
Introduction
This chapter reviews the literature pertaining to acculturation and the current state
of use of support services provided in a pediatric oncology clinic by Hispanics. The first
section is an overview of the historical background of acculturation. The second section
describes measurements of acculturation for Hispanics. The third section presents
acculturation for Hispanics in the United States. The fourth section describes the use of
health care by Hispanics in the United States. Finally, the fifth section reviews the types
of support resources offered at a pediatric oncology clinic. The author explores these
thematic areas in hopes to shed some light on a subject that has yet to be addressed.
These themes will be introduced because they have important implications as to the
question being examined: Does acculturation affect the likelihood that Latino parents will
make use of resources at a pediatric oncology clinic? Gaps in the literature will also be
discussed.
Historical Background
The history of Western civilization is largely a history of acculturation. Look, for
example, to the Celtic and Latin languages being amalgamated with the Germanic
dialects of the Anglo-Saxons, and later with French from Viking Normandy, to create
present-day English (Hadley, 1943). Acculturation has been particularly significant in
the United States. It is a nation founded by settlers from a variety of Western European
13
nations, who displaced many Native American societies and imported slaves from a wide
array of African and Caribbean regions (Rudmin, 2003a). The use of the concept of
acculturation emerges as early as the latter nineteenth century (Hallowell, 1945; Padilla
& Amado, 1980; Rudmin, 2003a). This interest in acculturation developed out of
concern for the effects of European domination of colonial and indigenous people
(Hallowell, 1945; Rudmin, 2003a). The word acculturation was first used in English text
in 1880 in a U.S. Bureau of American Ethnography report by Major J. W. Powell (Irele &
Jeyifo, 2010; Rudmin, 2003a). By 1883, Powell had refined the term in order to help
explain the psychological changes initiated from cross-cultural modeling. Consequently,
the Social Science Research Council (SSRC) commissioned a memorandum in 1936 for
the study of acculturation in recognition of the theory's importance and ambiguity (Irele
& Jeyifo, 2010).
It was Redfield, Linton, and Herskovits who gave the classical definition of
acculturation in 1936: “acculturation comprehends those phenomena which result when
groups of individuals having different cultures come into continuous first-hand contact,
with subsequent changes in the original cultural patterns of either or both groups”
(Redfield et al., 1936, p. 149). In 1954, the SSRC stressed that assimilation was not the
only kind of acculturation (Berry, 1997b; Berry, Segall, & Pierre, 2002).
It was then that acculturation achieved permanent status in anthropology as the
systematic process of often uneven changes to cultural features and traditions during
continuous firsthand contact between at least two cultural systems resulting in the gradual
14
increase of similarities between one or more of the cultures (Herskovits, 1940). And
since then scholars in sociology, psychology, cultural studies, and comparative literature
have appropriated acculturation when explaining minority groups' and immigrant
behavior modifications from living within a majority culture (Berry, 1997a; Berry, 2002;
Irele & Jeyifo, 2010).
Acculturation has been described to be a characteristic of a three-phase course to
acculturation: contact, conflict and adaptation (Berry, 1997b; Padilla, 1980). The first
phase is required, the second is likely, and some form of the third is unavoidable (Padilla,
1980). Acculturation is explained as potentially being reactive, thus prompting resistance
to change in both groups; creative, inspiring new cultural forms not found in either of the
cultures in contact; and delayed, starting changes that emerge completely years later
(Berry, 1997a). John Berry has been the most prolific and high profile contemporary
scholar continuing to promote this conceptualization (Rudmin, 2003b).
In 1967, Dr. Theodore D. Graves, professor and field researcher, distinguished
between acculturation as a collective phenomenon and psychological acculturation
(Berry, 1997a). Collective acculturation is change that takes place amongst a group’s
culture. Psychological acculturation is the change that takes place in the psychology of
the individual. This distinction is of great importance to examine the systematic
relationship between both variables and to understand that not all individuals experience
the same level of acculturation being experienced by their group (Berry, 1997a; Padilla,
1980).
15
Psychological adaptations to acculturation are considered to be a matter of
learning a new behavioral repertoire that is appropriate for the new cultural context.
Naturally some "culture shedding" (Berry, 1992) – the release of aspects of one's
previous repertoire that are no longer appropriate amid the new society—will have to
take place. During this culture shedding, there may be "culture conflict" where
incompatible behaviors create difficulties for the individual and these must be sorted out
(Berry, 1992). This conflict leads individuals to experience "culture shock" (Oberg,
1960) or "acculturative stress" (Berry, Kim, Minde, & Mok, 1987) if they are not easily
able to change their repertoire. Despite culture shock being an older concept and more
widely accepted, acculturative stress has replaced it as a more conceptually accurate term.
It is closely linked to psychological models of stress as a response to environmental
stressors, which in this case reside in the experience of acculturation (Berry et al., 2002).
For example, when changes in the cultural context exceed the individual's capacity to
cope because of the size, speed or some other aspect of the change, experiencing
acculturative stress can lead to serious psychological disturbances, such as clinical
depression and incapacitating anxiety affecting the process of acculturation and
adaptation (Berry et al., 2002).
Scholars in sociology, psychology, cultural studies, and comparative literature
have found that for most acculturating individuals, after a period of time, some adaptation
to the new cultural context usually takes place. Depending on a variety of factors, these
adaptations can take different forms. At times there is increased "fit" between the
16
acculturating individual and the new context, where the integration is pursued and
attitudes in the dominant society are accepting of the acculturating individual or group
(Berry et al., 2002). However, a "fit" is not always achieved especially when there is
separation and marginalization from the dominant culture. Consequently, the individual
or groups settle into a pattern of conflict which results in acculturative stress and
difficulty with psychological and sociocultural adaptation (Berry et al., 2003).
Today, scholarly interest in acculturation concentrates on how voluntary and
involuntary immigrants changed after their entry and settlement into their new receiving
societies (Beiser, 2000). Therefore, the majority of the work has involved “how
ethnocultural groups relate to each other and change as a result of their attempts to live
together in culturally plural societies” (Berry et al., 2002, p. 17). Consequently, today all
perspectives regarding acculturation are crucial, as globalization results in larger trading
and political relations. New waves of immigrants surge from these economic and
political changes (Berry et al., 2003) resulting in numerous cultures establishing
themselves in new environments.
The concept of acculturation has been criticized “because of the gradual erosion
of the original meaning…so that it [has become] synonymous with assimilation” (Berry,
1997a, p. 7). Assimilation is
the process whereby individuals or groups of differing ethnic heritage are
absorbed into the dominant culture of a society. The process of assimilating
involves taking on the traits of the dominant culture to such a degree that the
17
assimilating group becomes socially indistinguishable from other members of the
society. (assimilation, 2011, para. 1)
Assimilation is a function of both dominant and ethnic group behavior, because
even when the ethnic group desire assimilation the dominant group can prevent it (Spiro,
2009). Some scholars have also argued that there are difficulties in measuring and
defining just what is acculturation (Berry, Marshall, & Pierre, 2002).
Measurements of Acculturation for Hispanics
Recent research on Hispanics has been concentrated on their acculturation
process—what it is, how to measure it, how it affects the way individuals act and the way
they think (Marin, 1993; Marín, Ortero, Perez, Sabogal, & Vanoss, 1987). Measures of
acculturation are widely used today to assess the impact of acculturation perceptions of
country of origin, affiliation, cultural processes, and perceived health beliefs (Wallace,
Pomery, Latimer, Martinez, & Salovey, 2010). These scales attempt to quantify
participants’ “cultural and social knowledge, behaviors, and attitudes on responses to
length of time in the United States, place of birth, subjective measures of acculturation,
and language and media preferences” (Wallace et al., 2010, p. 40). Many of these diverse
models of acculturation measures have been presented.
Wallace et al. (2010) reveal that there are 26 acculturation measurements that
focus on Hispanics and the scales range from 4 to 62 questions. A short four-item
measure is used because it is simple, inexpensive, and involves minimal respondent
18
burden, especially when language skills are limited (Norris, Ford, & Bova, 1996; Wallen,
Feldman, & Aniker, 2002).
According to Wallace et al. (2010), there are three acculturation measures that are
well researched and validated in the literature, these are: The 20-item Acculturation
Rating Scale for Mexican Americans (ARSMA); The 12-item ARSMA-II; and last, the
12-item Bidimensional Acculturation Scale for Hispanics (BAS). The BAS is favorable
because of its ability to assess a wide range of minority groups within an ethnic group
such as Cubans, Puerto Ricans, Guatemalans, and Dominicans (Marín & Gamba, 1996;
Wallace et al., 2010)
The ARSMA and BAS attempt to assess the traditional aspects of Hispanic
culture, such as place of origin, cultural identity, language, social networks, and media
preferences (Cuéllar, Arnold, & González, 1995; Marín et al., 1987). These measures
have been utilized to assess acculturation among minority groups in conjunction with
other behavioral surveys that assess various perceptions. Studies that measure
acculturation help in understanding the health impact of poverty, low literacy, limited
education, and various religious practices (Marin et al., 1996; Rudmin, 2003a; Wallace,
et al., 2010).
Acculturation for Hispanics in the United States
Acculturation is not related to immigration solely because acculturation results
when immigrants confront a new cultural context. That is, the societal and individual
contexts both pre- and post-immigration shape the extent of acculturation (Cabassa,
19
2003). An immigrant leaving a socialist country for a democracy will have different
experiences from someone leaving a democracy for another democracy. A wealthy
immigrant will have a different acculturation experience from a poor immigrant. A
Spanish-speaking immigrant will have to acculturate less when the immigrant moves to a
Spanish-speaking nation.
Individual factors also affect the Hispanic acculturation process, such as
demographics during and after settlement, age at time of settlement, legal and residency
status, cultural distance between culture of origin and culture of settlement, time in the
new culture, and expectations for life in the new culture (Berry, 1997a; Berry & Sam,
1996; Cabassa, 2003). Accordingly, since individual experiences differ so greatly, it is
impracticable to tackle acculturation from an individual perspective. For the purposes of
this work, a macro level examination of the relationship between immigration and
acculturation is appropriate.
In the United States, a nation born of colonial expansion and mass migration,
immigrants have played a key role in the formulation of the national culture and
character. The melting pot model, in which people of variety nationalities, colors, and
beliefs unite to form one nation has been the hallmark of this country. Yet, the degree to
which Hispanic immigrants have integrated into the American society has not been
simple. For example, Mexican immigrants in the United States have been identified as
the nation's "other" (Chavez, 1991; Peñaloza, 1994) and as foreigners, people from
"another country and another culture who speak another language" (Peñaloza, 1994, p.
20
32). This "other" view persists in spite of Mexican and other Hispanic immigrant groups
sharing a number of fundamental qualities with the American mainstream population,
many of whom are the sons, daughters, grandsons, granddaughters, of immigrants
(Peñaloza, 1994).
For the purposes of the next paragraphs: First-generation refers to being born
outside the United States, its territories or possessions, and includes naturalized U.S.
citizens, legal immigrants or undocumented immigrants; Second-generation refers to
being born in the United States with at least one foreign-born parent; U.S. citizen by
birth; Third-plus generation refers to the being born in the United States with both
parents also born in the United States; U.S. citizens by birth.
In the middle decades of the 20th century, the Hispanic population in the U.S. was
dominated by the third-plus generations, the Hispanic segment with the deepest roots in
this country (Suro & Passel, 2003). In the 1960s the Hispanic population comprised
3.9% of the U.S. population, and in by the 1970s 5.2% (Bean & Tienda, 1987). From the
1950s through the 1970s, there was a political and cultural mobilization of Latinos as a
native minority group with a historical experience of discrimination (Suro & Passel,
2003). Consequently, a Latino civil rights movement was launched by organizations like
the United Farm Workers (UFW), the Chicano Movement, the Alianza Federal de las
Mercedes (movement to reclaim land grants), the Crusade for Justice, and National
Council of La Raza (NCLR), who stood up to the conviction that mainstream society was
prejudiced against Latinos because of the cultural antipathy and because Latinos were
21
racially different (Rosales, 1997). These movements were driven by the perception that
Latinos living in the United States encountered repressive conditions that needed to be
changed (Rosales, 1997). Today, many of these institutions created during the Latino
civil rights movement continue to exercise leadership roles representing the Hispanic
community in the United States.
By 1980, the first-generation population was of almost of equal size to the thirdplus generation. Hispanics made up 6.4% of the U.S. population (Bean & Tienda, 1987).
Two factors stand out in the accounting for the great growth of the Hispanic population
since 1960. First, an increased immigration from Latin America and migration from
Puerto Rico, and second, the higher fertility amongst Hispanic origin women (Bean &
Tienda). In 1986 the United States Congress passed an immigration reform bill, the
Immigration Reform and Control Act (IRCA), which offered two new policy tools. First,
the IRCA developed civil and criminal penalties for U.S. employers who knowingly hired
undocumented immigrants. Second, IRCA authorized a one-time-only immigration
benefit program to legalize undocumented immigrants that already lived in the United
States—this program came to be known as amnesty (Baker, 1997). Consequently, many
Hispanic immigrants had to adjust to legal status in the United States.
By 1990 the first generation population were clearly the largest segment of the
Hispanic population (Suro & Passel, 2003). During this period a range of issues related
to immigration arose, the Spanish-language media grew, and the Hispanic population
settled into new areas of the United States, such Upper Midwest and Southeast as
22
immigrants moved in search of employment (Suro & Passel, 2003). On November 8,
1994, California voters approved Proposition 187, the "Save Our State" (SOS) initiative,
by 59% to 41% (Martin, 1995). If implemented, Proposition 187 would have created a
state-run system to verify the legal status of all persons seeking public education, health
care and other public benefits, thus making these services unavailable to undocumented
immigrants. Proposition 187 marked the beginning of efforts to reduce legal and illegal
immigration. Proposition turned out to be "a largely symbolic expression of frustration
with illegal immigration, much as was Proposition 63, which made English the state's
'official language' in 1986" (Martin, 1995, p. 255).
Today Hispanic immigrants continue to be attacked due to the rise of the antiimmigrant sentiment in the United States. Across the country there have been proposed
and/or enacted hundreds of bills targeting Hispanic immigrants. Statewide ballot
initiatives, such as California's Proposition 227, Arizona's Proposition 203, and
Massachusetts's Question 2, have served as effective tools for attacking bilingual
education programs and changing the language policies governing the education of
Spanish-speaking students (Galindo & Vigil, 2004). Another reflection of the antiimmigrant Hispanic sentiment is Arizona state's enactment, on April 23, 2010, of the
nation's toughest bill on illegal immigration; as it aims to identify, prosecute and deport
illegal immigrants (Archibold, 2010). Consequently, massive rallies in favor of
immigrants' rights organized by United Latin American Citizens (LULAC) and other
Latino organizations have become part today's culture throughout the United States
23
(Zlolnisk, 2008). These demonstrations represent the largest effort by immigrants in
recent years to influence public policy, and many immigrant advocates have described
them to be the beginning of a new, largely Hispanic civil rights movement (Zlolnisk,
2008).
The increase in Spanish-speaking immigrants now in the U.S., and the ensuing,
inevitable influence on American culture, necessarily has decreased the need for full
acculturation to the mainstream culture. The size, persistence, and concentration of
Hispanic immigration tends to perpetuate the use of Spanish through successive
generations. The evidence on English acquisition and Spanish retention is unclear. In
2000, more than 28 million people in the United States spoke Spanish at home (10.5% of
all the people over the age of five), and almost 13.8 million of these spoke English
inferior to "very well" (Huntington, 2004). Spanish retention is encouraged by the large
number of Hispanic immigrants who emphasize the need for their children to be fluent in
Spanish due to the size of Hispanic communities; which creates incentives for fluency in
the ancestral language (Huntington, 2004). Although second and third generation
Hispanic populations acquire competence in English, they appear to deviate from the
usual pattern (to abandon the ancestral language) by maintaining their competence in
Spanish (Huntington, 2004).
Immigrants are characterized as the group of acculturating individuals who
voluntarily move from one society to another, and who consequently tend to have a
relatively permanent residence in the new society. It is believed that due to the voluntary
24
nature of immigrants' cultural contact with new societies, one should expect a relatively
easy acculturation experience and positive adaptation outcomes, at least in comparison to
refugees (Berry et al., 2002). As refugees tend to be involuntary, migratory, and in the
majority of cases temporary to a new society. Additionally, refugees are likely to have
experienced the most difficult pre-acculturation situations, including war, deprivation,
torture, famine, and humiliation; either at that individual and/or at the group level (Berry
et al., 2002). However, despite this striking difference, immigrants are at times reported
to encounter more problems than their voluntary status would suggest (Naidoo, 1992).
Mexican immigrants, like Hispanic immigrants in general, are similar to previous
immigrant groups who have come to the United States in search of economic opportunity
and to join other family members. A great deal of European immigration into the United
States in the late 1800s and early 1900s was driven by the same impetus—work,
prosperity (Rosenbloom, 1994). Hispanic immigrants share aspirations for the future as
they work hard toward attaining a better way of life qualities referring to the "American
way" (Peñaloza, 1994).
Since immigrants normally do not intend to return to their countries of origin, it
makes it more difficult for them to return when it turns out that their acculturation
experiences fall short of expectations. The desire for better social conditions and quality
of life tend to be the principal motivators for migration (Furnham & Bochner, 1986).
Therefore, the motive to migrate is believed to include relative deprivation of full
employment opportunities, education, health and housing in the country of origin.
25
Since the 1970s, immigration has represented by far the fastest and the largest
source of Hispanic population growth, consequently the first generation—the foreign
born—has become more numerous than the second and the third-plus generation—those
born in the United States of U.S. born parents (Suro & Passel, 2003; U.S. Census Bureau,
2010). The largest impact over the past 30 years has been measured in the number of
Spanish-speaking immigrants joining the labor force (Therrien & Ramirez, 2001; U.S.
Census Bureau, 2010; U.S. Census Bureau, 2011). Between 1970 and 2000 the Hispanic
population grew 25.7 million. First generation immigrants accounted for 40% of the
Hispanic population, the second generation accounted for 28%, and the third-plus
generation accounted for 32%. In numbers, by the year 2000 the first generation totaled
14.2 million, the second generation numbered 9.9 million, and the third-plus generation
counted 11.3 million (Suro & Passel, 2003). The Hispanic immigrant population is
projected to continue to increase, as has the second generation (Suro & Passel, 2003;
Therrien & Ramirez, 2001). It is predicted that the Hispanic population will grow by 25
million people between 2000 and 2020. During this time, the second generation is
expected to account for 47% of the Hispanic population growth in the United States (Suro
& Passel, 2003; Therrien & Ramirez, 2001).
The importance of these trends is most salient in terms of how the increased
Hispanic population may affect acculturation for Hispanics, both new arrivals and those
currently in the U.S. For the past century, the predominant conception of acculturation
has posited that minorities react to prolonged intercultural contact by assimilating to
26
dominant society, by separating from it, or by becoming bicultural, either successfully as
with bicultural integration or unsuccessfully as with bicultural marginalization (Rudmin,
2003b). It does not appear that there is any literature indicating that Hispanics adapt any
differently. It is instructive to note that language related variables are crucial to the
culture learning process and to sociocultural adaptation, since they are considered key
elements in language acquisition and effective intercultural communication. Studies have
established that attitude and motivation influence how successful an individual will be in
learning another language (Masgoret & Gardner, 2003), thus adopting the language of the
dominant society.
Acculturation and Use of Health Care by Hispanics in the United States
Recent studies on acculturation convey that Hispanics’ access to health care and
quality are worsening (Lara, Gamboa, Kahramanian, Morales, & Hayes, 2005; Perez,
Ang, & Vega, 2009; Zambrana & Carter, 2010). Over one-third of U.S. Latinos do not
have health insurance, which likely affects both health and quality of care (Foster, Read,
& Bethell, 2009; Perez et al., 2009). According to Aday (2001) data on health care needs
of Hispanics show that Hispanics are to be in poorer health than are majority whites.
However, health insurance is not the only barrier to both personal health and quality of
care.
Hispanics are the largest group of minority children in the United States,
representing one out of every six children (Flores, Abreu, Olivar, & Kastner, 1998;
Flores, Fuentes, & Barbot, 2002). Hispanic parents with minimal acculturation have
27
identified language problems, cultural differences, poverty, lack of health insurance,
transportation difficulties, and long waiting times as the major access barriers to health
care for Latino children (Flores et al., 1998; Flores et al., 2002; Flores & TomanyKorman, 2008). According to a study conducted by Flores et al. (1998), these barriers
have led to poor medical care 8% of the time, misdiagnosis 6% of the time, and
prescription of inappropriate medication 5% of the time. Additionally, being a lowincome family was significantly associated with greater odds of a child having less than
perfect health status (Flores et al., 1998; Flores et al., 2002).
A paradox that has been observed with successive cohorts of immigrants to the
United States, particularly among Hispanics, is that children and first-generation
immigrants may be healthier than those who live in the United States for longer periods
of time (Aday, 2001). This effect has been attributed to the fact that longer term
residents, living in the United States, have become acculturated to U.S. society, including
adopting practices such as smoking, alcohol use, and the consumption of fatty foods that
put individuals at higher risks of developing chronic health problems (Aday, 2001;
Hernandez & Charney, 1998).
Types of Support Resources Offered at a Pediatric Oncology Clinic in California
Childhood cancer is emotionally, physically, and financially demanding on the
entire family, but often, the negative impact of the illness can be minimized through
special programs in pediatric oncology. All children and families require some assistance
in handling the multiple issues confronting them at each illness stage. Most have never
28
had any direct experience with cancer or other serious illness or with the complex system
of health care (Lauria et al., 2001; McCubbin, Balling, Possin, Frierdich, & Bryne, 2004).
For several decades, psychosocial research in oncology has studied the needs of
cancer patients. The majority of these studies have focused on psychological concerns,
but more recently work has concentrated on what social workers refer to as concrete or
practical needs (Stearns, Lauria, Hermann, & Fogelberg, 1993). There are a variety of
needs among cancer patients, which have been generally categorized as physical loss of
mobility and pain; instrumental (daily home help and transportation); and administrative
(financial, finding help, paper work, and information). Cancer patients usually
experience a compilation of these needs—involving more than one category—and
significant needs can provoke a family crisis (Mor, Guadagnoli, & Wool, 1987). Studies
conducted in Pennsylvania estimated that 72% of people who died of cancer had at least
one unmet need. The most common unmet need was found to be instrumental and
administrative (Houts, Yasko, & Harvey, 1988).
A 1980 study of families with children referred for treatment of cancer revealed
that during the first inpatient week of treatment, the sum of income lost plus additional
expenditure exceeded 50% of total monthly income in over 45% of families (Bodkin,
Pigott, & Mann, 1982). According to Bodkin et al., during the following week of
outpatient treatment, loss of income plus additional expenditure amounted to more than
20% of income in over half the families. These problems affected all the groups studied
and were not confined to lower-paid or those living furthest from the treatment center.
29
Bodkin et al. (1982) and Lansky, Black, and Cairns (2006) reveal that medical costs to
the family were found to be much less than the nonmedical costs incurred during their
child’s treatment.
Fortunately, in response, there are numerous support resources available to all
children diagnosed with cancer (Lauria et al., 2001). If a child is diagnosed with cancer
and is a citizen of the United States, the parents’ immigration status is not relevant. The
child is eligible to receive Supplemental Security Income (SSI), a Federal income
supplement program funded by general tax revenues designed to help aged, blind, and
disabled people who have little or no income; a child diagnosed with any type of cancer
is considered be disabled (U.S. Social Security Administration, 2010). The monthly cash
income refers to the basic needs for food, clothing, and shelter for the child and child’s
family (U.S. Social Security Administration, 2010). SSI eligibility is determined based
on the family's monthly income earned (U.S. Social Security Administration, 2010);
therefore, not all families with a child diagnosed with cancer qualify to receive this
financial assistance.
Additionally, there are charitable organizations offering additional financial
assistance despite a child’s or parents’ immigration status. Among these organizations
are: Andre Sobel River of Life Foundation, Cancer Fund of America, The Szott
Foundation, National Transplant Assistance Fund, National Children’s Cancer Society,
United Healthcare Children's Foundation, The Ronald McDonald House, The Sharing
Place, and The Leukemia & Lymphoma Society's Patient Financial Aid Program (The
30
American Cancer Society, 2010b). These organizations specifically assist pediatric
oncology patients and their families when there is a financial hardship. The financial
assistance exists to assist with expenses such as: gas expenses due to the large amount of
clinical and hospital visits, transportation for those who do not have access to a personal
vehicle, food (especially for parents who are bedside when patient is hospitalized),
paying for boarding for parents and/or family when family is from out of town, and
utilities.
The negative impact of the illness can often be minimized through programmatic
interventions designed to meet the unique psychosocial needs of the patient and family.
These support services which originate primarily with the support of a pediatric oncology
clinic and the community of cancer organizations, offer services to address emotional
needs or other consequences inherent in the course of childhood cancer (Stearns et al.,
1993). At critical stages during a child's medical care, art therapy, having a patient's
"wish" made into a reality, going away for summer camp, becoming part of a support
group, or a family member being able to stay at a Ronald McDonald House can alleviate
stress and lessen the burden of the disease (Stearns et al., 1993).
Due to childhood cancer affecting the entire family, special programs have been
created to meet the needs of patients and to address the concerns of siblings, parents, or
the family as a whole (Stearns et al., 1993). These programs offer families and patients
opportunities to share information, thoughts, and experiences that will enable them to
cope with feelings of depression, isolation, and immobilization. These programs are not
31
concerned with immigration status. Referrals to these support resources programs are
primarily made from a pediatric oncology clinic where the patient is being treated from
(Stearns et al., 1993).
There are multiple services available to help children deal with impact of the
illness in ways consistent with their stage of development. Some of these services are: art
therapy for patients and siblings, oncology summer camp programs for patients, siblings,
and families, Make-A-Wish for patients and their families, school programs, group work
services (also known as support groups) for patients, siblings, and parents or primary
caregivers. All of these services are provided at no cost and with the objective to help the
patient and the patient's family copes with the diagnosis and with treatment.
Gaps in the Literature
Limitations of acculturation research that were found generally revolve around
central concepts being simple, ambiguous and inconsistent; and models of acculturation
which are implicit or poorly specified, lack clear definitions, and inadequately define
acculturation (Wallace et al., 2010; Zambrana et al., 2010). Consequently, acculturation
research can lead to inadequate generalizations regarding Hispanics that have not fully
helped to advance understanding of health care disparities (Zambrana et al., 2010).
Because the Hispanic immigrant group is so diverse—ranging from a total of 21
countries in the Americas, the Caribbean, and Europe—it is difficult to generalize about
patterns of acculturation, even on a macro level. Consequently, there seems to be a lack
of literature that is able to generalize on how Hispanics acculturate to the United States
32
due to the diversity that exists amongst Hispanics as well as the individual factors also
affecting the Hispanic acculturation process, such as demographics during and after
settlement, age at time of settlement, legal and residency status, cultural distance between
culture of origin and cultural of settlement, time in the new culture, and expectations for
life in the new culture (Berry, 1997a; Berry & Sam, 1996; Cabassa, 2003).
Consequently, research findings have not been reported on acculturation from an
Hispanic generalized perspective.
However, given that the population of Hispanic immigrants is dominated in
numbers by Mexican immigrants (Bean & Tienda, 1987; Therrien & Ramirez, 2001), if a
generalization were required it could potentially be drawn from characteristics of
Mexicans. In 2000, 32.8 million Hispanics resided in the United States, representing
12.0% of the total U.S. population. Among the Hispanic population, 66.1% were of
Mexican origin, 14.5% were Central and South American, 9.0% were Puerto Rican, 4.0%
were Cuban, and the remaining 6.4% were of other Hispanic origin (Therrien & Ramirez,
2001). Despite there being a large quantity of literature on the acculturation process,
there seems to be a paucity of literature dealing with acculturation trends among specific
groups.
Wallace et al. (2010), Flores et al. (1998), and Lara et al. (2005) challenge health
researchers to incorporate acculturation measures and health promotion models for future
planning, social marketing, implementation, and evaluation of health initiatives.
Furthermore, Wallace et al. (2010) reveal that future studies of acculturation and health
33
among Hispanics should include a broader array of important characteristics such as “the
influence of religion, [fatalism], and family support in addition to place of origin and
language” (p. 49) in order to increase the accuracy of research using acculturation
measurements. Accordingly, the author of this research will implement detailed
measurements of acculturation to portray the most precise level of acculturation of
Hispanic parents and how their level of acculturation can affect their child’s and family’s
support during treatment.
Furthermore, the acculturation measurements lack the qualitative point of view.
While these studies of acculturation using measurements scales and are quantitative in
nature, they can be used to generalize and to a wider population. The researchers are not
acquiring a personal story from the respondent which has the potential to reveal the
reasoning behind taking certain actions, in this case parents deciding to use or not to use
support services for their child and their family. In order to bridge, to some degree this
gap, researchers may use subject interviews.
According to Bodkin et al. (1982) and Lansky et al. (2006), families of children
with cancer need more help than is at present available, especially to offset loss of
income, and at times, the cost of funerals. The American Cancer Society (2010b) reveals
that there are numerous resources to help families through financial difficulties; however,
many of these funds go untouched. It is for this reason the author of this research wishes
to discern whether the parents’ level of acculturation affects the pursuit of support
34
resources offered for pediatric oncology patients and their families, and why they may or
may not seek or accept services.
Summary
In this section, the author discussed the formulations that currently exist to
measure an individual’s acculturation level, acculturation for Hispanics in the United
States, Hispanic health related to acculturation, and the support resources pediatric
oncology patients and their families have at their disposal. Gaps in the literature were
also presented. In the next chapter, the methodology is described.
35
Chapter 3
METHODOLOGY
In this chapter, the author explains the methodology utilized in this study. The
following areas are addressed: the Research Question, Study Design, Variables, Study
Population, Sample Population, Instrumentation, Data Gathering Procedures, and Data
Analysis. Additionally, the procedures for the Protection of Human Subjects were
reviewed.
Research Question
This study seeks to determine if acculturation affects the likelihood of Latino
parents making use of services at a pediatric oncology clinic. Therefore, the study
investigates the following question: Does acculturation affect the likelihood that Latino
parents will make use of services offered to patients and their families at a pediatric
oncology clinic?
Study Design
Both qualitative and quantitative mix-methods designs were used in this study.
The two mix-methods components were: qualitative content analysis interview and a
quantitative survey research design.
Qualitative Content Analysis Approach
This approach is employed when the researcher intends to gain understanding and
knowledge of the human experience. The qualitative research method attempts to tap the
deeper meanings of particular human experiences and is meant to produce theoretically
36
richer observations that are not easily reduced to numbers (Rubin & Babbie, 2008).
Generally employed methods for collecting data include unstructured or intensive
interviewing, direct observation, and/or participant observation (Rubin & Babbie, 2008).
Qualitative research is not standardized. The data is in the form of words,
phrases, and text; therefore data analysis requires an interpretation on non-numerical
research data in order to develop patterns of relationships, themes, or categories (Rubin &
Babbie, 2008). These patterns of relationships, themes, or categories derive from the
research question, concepts found in the literature, terminology utilized by participants,
and ideas arising in the review of research data. Accordingly, qualitative researchers
study their subjects in their natural settings, attempting to interpret phenomena in terms
of the meaning people bring to them (Denzin & Lincoln, 2005).
Qualitative Interviewing
Qualitative research is a matter of going where the action is and to simply watch
and listen. A lot can be learned by purely being attentive to what is taking place (Rubin
& Babbie, 2008). Yet, qualitative research has the ability to have a more active inquiry,
by asking participants questions when appropriate. Qualitative interviewing generally
refers to in-depth, loosely or semi-structured interviews and these have been referred to
as “conversations with a purpose” (Seale, 2004, p. 181). This qualitative tool is used to
encourage an interviewee to talk, perhaps at some length, about a particular issue or a
range of topics. This distinguishes it from survey-based interviews that tend to ask
37
closed-ended questions as they follow a structured format to elicit specific information
from the interview subjects.
There are many advantages to using a qualitative interviewing research approach.
Qualitative interviewing is particularly useful as a research method for accessing
individuals' attitudes and values—things that cannot necessarily be observed or
accommodated in a formal questionnaire (Seale, 2004). Open-ended questions and
flexible questions that are likely to get a more well thought-out response than closed
question, thus providing better access to interviewees' views, interpretations of events,
experiences, understandings, and opinions. Additionally, social cues, such as voice,
intonation, body language, and reactions of the interviewee can give a lot of additional
information that can be added to the verbal answer of the question. Qualitative
interviewing is especially a suitable method for accessing complex issues such as values
by allowing interviewees to speak in their own voice and with their own language (Seale,
2004).
When done well, qualitative interviewing is able to achieve a level of depth and
complexity that is not available to other methods, such as surveys. The non-standardized
interview enables the researcher to become attuned to subtle differences in people's
positions and to be able to respond accordingly (Seale, 2004). Thus, the researcher is
able to use relevant follow-up questions or ask for clarification when found necessary.
The information acquired from the qualitative interviews generally produces thorough
comprehensive data.
38
There are also disadvantages to consider when using a qualitative interviewing
approach. When using this approach, fewer participants are sampled; consequently, the
input regarding the subject being studied is limited and not able to generalize the findings
to the population being studied. The data collection process can be very labor intensive
and costly. Furthermore, the bias of the researcher can affect the design of the study, data
collection, and interpretation of the research (Creswell, 2003).
Content analysis is used as the particular method to report on the data obtained by
means of interviewing. In basic terms the method is a coding process in which oral,
written or other communication sources are organized according to some theoretical
framework (Neuendorf, 2002; Rubin & Babbie, 2008). Within the content analysis
method there are two basic techniques. There is the latent analysis which categorizes the
deeper meaning found within the content, and then there is the manifest analysis which
categorizes the structure or surface data (Krippendorff, 2004; Neuendorf, 2002; Rubin &
Babbie, 2008). In this study, there will emphasize more on the latent quality of data to
formulate a deeper understanding of how acculturation effects Latino parents making use
of support services offered at a pediatric oncology clinic. The content analysis method
allows for qualitative data to be interpreted into a quantifiable form (Rubin & Babbie,
2008). The latent content analysis method in general works through an inductive
approach in which an understanding emerges by organizing the content into themes
(Krippendorff, 2004).
39
The application of content analysis to the data collected by qualitative
interviewing presents the phenomena (Rubin & Babbie, 2008). Furthermore, it tends to
offers a more efficient utilization in terms of money and time (Krippendorff, 2004).
These advantages lend themselves due to the fact that content analysis can generally be
performed without a lot of specialized training and can be recreated without having to
acquire any new data (Krippendorff, 2004). One major disadvantage, according to Rubin
and Babbie (2008), is the reliability of this method. An example of this is, two
researchers may arise with distinct themes even analyzing the same data.
Survey Research Design
The second method utilized is this study is survey research design. Survey
research is useful for explanatory studies and allows for many questions to be asked
about a single topic (Rubin & Babbie, 2008). Surveys are predominantly effective to
describe a large population's characteristics (Rubin & Babbie, 2008). According to
Rubin & Babbie (2008), a carefully constructed standardized questionnaire combined
with a selected probability sample offers a "refined descriptive assertions" about the
population being studied (p. 384). Furthermore, survey research has demonstrated to
have an important strength in regard to measurement generally (Rubin & Babbie, 2008).
Nevertheless, survey research has its weakness as it is known to be artificial and weak on
validity (Rubin & Babbie, 2008). In surveys "standardized questionnaires items often
represent the least common denominator in assessing people's attitudes, orientations,
40
circumstances, and experiences (Rubin & Babbie, 2008, p. 385). Consequently, "surveys
often seem superficial in their coverage of complex topics" (Rubin & Babbie, 2008, 385).
Likert Scaling
The survey questionnaire was formatted using the Likert-type scale. The Likert
scale format is made up by prompting statements presented to the participants. The
participants are asked to indicate whether they "strongly agree," "agree," "disagree,"
"strongly disagree," or are "undecided" (Rubin & Babbie, 2008). The wording of the
response categories can be modified depending on how the prompts are posed.
There are several advantages to using a Likert-type scale questionnaire. The
Likert scale format provides straightforward response categories. The Likert scale
resolves the quandary of judging the relative strength of statement agreement (Rubin &
Babbie, 2008). Additionally, the Likert format lends itself to a straightforward method of
scale, or index construction. Because identical response categories are used for several
items, each response category can be given a measuring variable. Also, each item can be
scored in a consistent manner (Rubin & Babbie, 2008). Consequently, each participant
can be assigned an overall score that represents the summation of the scores he or she
obtains in regards to their individual item responses.
Rubin and Babbie (2008) explain that the Likert-type scale method is based on the
"assumptions that an overall score based on responses to the items that reflect a particular
variable under consideration provides a reasonably good measure of the variable" (p.
217). The uniform scoring permitted by the Likert-type response categories assumes that
41
each item being asked has more or less the same intensity as the rest of the items being
asked. Furthermore, the closed-ended questions provide greater uniformity of responses,
thus are more easily processed.
There are also disadvantages to using a Likert-type scale. The Likert-type scale is
made up of closed-ended questions, which follow a structured format in the form of a
questionnaire and is designed to elicit specific information or facts from the participant
(Seale, 2004). As a result, participants are not permitted to add to their answers. The
Likert scaling format does not elicit further data that might be relevant to the particular
variable being studied, thus it is the researcher's responsibility to ensure that this data is
acquired in another form to be used for analysis of the studied variable.
The author implemented a mix-methods design in order to acquire a fuller
appreciation of the influences on participants’ use of support services. A Likert-type
scale questionnaire was used to measure the participants' level of acculturation. A
qualitative interview was used to explore the decision to use or not use support services
offered at a pediatric oncology clinic, as well as participant, specific reasons related to
those decisions.
Variables
The independent variable for this study is the level of acculturation of Latino
parents with children receiving pediatric oncology medical care. The dependent variable
is the use of services that are offered at a pediatric oncology clinic. The author
conceptualized the independent variable, level of acculturation, by using the Likert
42
scaling questionnaire presented in the well researched and validated Bidimensional
Acculturation Scale for Hispanics (BAS), developed by Gerardo Marin and Raymond J.
Gamba, and cited in Measures for clinical practice and research: A sourcebook
(Corcoran & Fischer, 2007). The authors of this scale state, "there is no need to obtain
permission from the authors to use the BAS for research or clinical work" (Corcoran &
Fischer, 2007, p. 102). Each item was measured with a scale between 1 and 4, with 1
meaning "Almost never" or "Very poorly" depending on the category being surveyed and
4 indicating "Almost always" or "Very well," once again depending on the category
being surveyed.
The author conceptualized the dependent variable, the use of support services
offered at a pediatric oncology clinic, by identifying the most common support services
offered to patients and families at a pediatric oncology clinic and by exploring the
decision to use or not use support services offered at a pediatric oncology clinic. This
identification and exploration was measured through a qualitative interview that gave
participants the opportunity to freely explain their use or refusal of support services they
themselves identified. The qualitative interview was guided by four questions that
encouraged participants to discuss at length the specific details behind their decisions.
Study Population
The study participants consisted of 10 individuals. The criterion was that
participants were Hispanic parents who have a child receiving treatment at Sacramento's
Northern California Children's Hematology and Oncology Medical Group. In addition to
43
being of Hispanic ethnicity, the other prerequisites for participation were being born in a
Spanish speaking country (eight women were born in Mexico, and two in El Salvador),
and later migrating to the United States. At the time of the study, all participants
currently resided in the United States.
The actual population for this study consisted of 10 women. The level of
education completed in their country of origin varied, from elementary school to high
school. Participants ranged in age from 25 to 42. Occupations ranged from homemakers,
waitresses, housekeeping personnel, and field workers.
Sample Population
The author conducted the study at Sacramento's Northern California County
Children's Hematology and Oncology Medical Group, which serves pediatric patients
with various forms of cancer. The study used the purposive sampling method.
According to Tashakkori and Teddle (2003), purposive sampling is called for when
selecting study participants in the following three circumstances: 1) when it is necessary
to interview difficult to reach and /or specialized population; 2) when the researcher
wishes to study informative participants; and 3) when the researcher wants to identify
interviewees linked to particular types of cases. For this study, it was important to
interview parents of children who are currently receiving oncology treatment in order to
ensure that the data acquired was current and relevant.
The 10 individuals studied were approached in person and offered a flyer
explaining the type of research study being conducted, its purpose, the prerequisites and
44
request for participation. The 10 participants either approached the author in person (in
the clinic) or by phone to indicate their interest to participate in this study. Participation
in this study was strictly voluntary. After being given information about the study, 10 of
the 12 parents agreed to participate.
Instrumentation
The author used a mix-methods design; subsequently, there were two instruments
to the study: a qualitative interview and a Likert scaling Bidimensional Acculturation
Scale for Hispanics (BAS) questionnaire (see Appendices A and B). The qualitative
interviews were conducted as standardized, face-to-face, open-ended interviews with ten
Hispanic parents who each have a child receiving oncology treatment. Participants also
completed the BAS questionnaire. The interviews and the completion of the BAS lasted
between 50 minutes to 1 hour and 15 minutes in length. The interviews were conducted,
and the questionnaires completed, at the convenience of the participants. The participants
had the option to be interviewed either in a private room at the pediatric oncology clinic
or in a private room at their local public library.
In preparation for the interviews, the author designed a standardized questionnaire
consisting of four questions. There was a dual purpose for utilizing the same four
questions for all the interviews. First, to ensure all 10 interviews were conducted in the
same manner ascertaining consistency and a thorough process. According to Denzin and
Lincoln (2005), this consistency and thoroughness is useful when coding data, as it
guarantees that complete data is collected from each subject. Furthermore, using the
45
same order of questions assists the researcher with the organization and analysis of the
data (Creswell, 2003). Second, a structured set of questions helped reduce biases on the
part of the researcher. According to Rubin and Babbie (2008), using a standardized
approach—in this case the same set of questions—can restrict the natural conversation
between the researcher and the subject and the researcher's flexibility. Yet, because the
questions are being asked in the form of an interview, the subject has the ability to add to
their answers and the researcher has the flexibility to ask natural follow-up questions.
There are many advantage to using open-ended questions: the researcher is likely
to get a more well-considered response; the questions allow for an unlimited number of
different answers to the same questions; respondents are able to express their perspective
using their own words; respondents are able to make inquiries for clarification.
Simultaneously, there are disadvantages to open-ended questions. Respondents differ in
the amount of articulation they give to questions. Also, the responses gathered must be
transcribed verbatim. Here, because the interviews were conducted in Spanish, it was
necessary to translate the original interview transcript into English; this was quite labor
intensive. Responses to questions may be very detailed, yet may not address the
question. Finally, comparing the data can be difficult to fully comprehend the meaning
or intent respondents may have had when discussing the issues (Denzin & Lincoln,
2005).
The interview process is particularly useful as a research method for accessing
individuals' attitudes and values—things that cannot necessarily be observed or
46
accommodated in a formal questionnaire. This interview process mimics a social
relationship involving social norms and expectations. Seale (2004) and Rubin and
Babbie (2008) offer some guidelines for conducting an effective interview. First, the
researcher's appearance and demeanor. Dress, grooming, and approach are important in
order to have the ability to set the tone of the interview. The general rule is that a
researcher's attire should be similar to those that are being interviewed. If the researcher
is dressed-up noticeably more than the interviewee, then obtaining cooperation from the
participant may be a challenge. Yet, if the researcher is inadequately dressed, the
interviewee may not take the interview seriously and may not treat him/her with respect.
Thus it is crucial that the researcher presents himself or herself as clean, neat, and
organized. The researcher's approach must be pleasant and must convey an interest in
listening and understanding what the respondent has to say.
Second, the researcher must be familiar with the format of the interview and the
questions being asked. In order for the questions to be asked naturally, it is crucial that
the researcher feel very comfortable asking the questions without stumbling on the
words. It is equally important for the researcher to conduct the interview at a comfortable
pace for the respondent. This will help put the participant at ease and create a more
relaxed and, hopefully, enjoyable experience. The researcher must know when there is a
need to clarify questions in a natural manner for the respondent or clarify answers for the
researcher. Clarification is frequently necessary when a question seems to be unclear to
47
the respondent, when the respondent's answers go astray or are unclear, and in order to
gain more insight into a subject or topic matter.
Third, the researcher must accurately record the interview. The interview must be
recorded continuously and without alterations. This also includes not paraphrasing or
summarizing what respondents may have stated during their interview. And finally,
fourth, the exit is the last guideline. When the interview has ended, the researcher should
thank the respondent for their participation in the research interview process.
In addition to the face-to-face, standardized, open-ended interviews, the
researcher implemented a Likert-type scale questionnaire to measure participants'
acculturation. The 24-item questionnaire is called the Bidimensional Acculturation Scale
for Hispanics (BAS), developed by Gerardo Marin and Raymond J. Gamba, and cited in
Measures for clinical practice and research: A sourcebook (Corcoran & Fischer, 2007).
BAS is a 24-item instrument designed to measure acculturation among Hispanics. These
questions have three language-related factors: language use, linguistic proficiency, and
electronic media use. The BAS displays the questions in the following manner: language
use (items 1-6); linguistic proficiency (items 7-18); and electronic media (items 19-24).
These items from the three sub-areas were presented to respondents in random order, as
suggested by the BAS authors.1
Respondents were presented with 24 statements in questionnaire form. Some
prompts asked respondents to indicate "almost always," "often," "sometimes," or "almost
1 The BAS authors state there is no need to obtain permission for use of the BAS for
research or clinical work (Corcoran & Fischer, 2007; Marin & Gamba, 1996).
48
never." Other statements prompted respondents to indicate a response of "very well,"
"well," "poorly," or "very poorly." Respondents were given the option to answer the
BAS in English (see Appendix A) or in Spanish (see Appendix B). Therefore, two
identical linguistic versions have been developed by the authors of this acculturation
measurement instrument.
After each participant completed the BAS, the data was scored by the researcher.
Each respondent was assigned two scores: one for the average of the 12 items making up
the Hispanic domain (items 4-6, 13-18, and 22-24) and another score for the 12 items
forming the non-Hispanic domain (items 1-3, 7-12, and 19-21). This scoring allowed for
the independent variable, the level of acculturation, to be conceptualized.
The researcher chose the BAS as the instrument to measure respondents'
acculturation because this instrument is well-researched and validated in the literature
(Corcoran & Fischer, 2007; Marín & Gamba, 1996; Wallace et al., 2010). The BAS has
good-to-excellent internal consistency (Corcoran & Fischer, 2007). The BAS is favored
because of its ability to assess a wide range of minority groups within an ethnic group
such as Cubans, Puerto Ricans, Guatemalans, and Dominicans (Marín & Gamba, 1996;
Wallace et al., 2010). BAS attempts to assess the traditional aspects of Hispanic culture,
such as place of origin, cultural identity, language, social networks, and media
preferences (Cuéllar et al., 1995; Marín et al., 1987).
The BAS scale was initially developed with a random sample of 254 adult
Hispanic residents of San Francisco, California, who were interviewed over the
49
telephone. According to Fischer and Corcoran (2007) the BAS "has good to excellent
internal consistency" (p. 101). The alpha for the combined score of the three subscales
for the Hispanic domain was .90 and for the non-Hispanic domain was .96. The alpha for
the subscales ranges from .81 to .97. These measures have been utilized to assess
acculturation among minority groups in conjunction with other behavioral surveys that
assess various perceptions (Fischer & Corcoran, 2007).
Data Gathering Procedures
The researcher met with the director and senior oncologist of the Northern
California Children's Hematology and Oncology Medical Group, Sacramento clinic.
During this meeting, we discussed and identified patients whose parents probably met the
criteria for the research project. At this meeting, the researcher was given verbal and
written permission and support (see Appendix C) from the clinic's director to approach
and invite parents to participate in the research during their child's routine clinic
appointment. Furthermore, the researcher was given permission to conduct interviews
and questionnaires at the clinic if participants elected to remain in the clinic.
Each participant was approached in person and offered a flyer that explained the
research being conducted, its purpose, the criteria required to be able to participate in the
study, and asked if they would be willing to voluntarily participate. The researcher then
set up a mutually convenient time and location for the interview and questionnaire
completion.
50
All interviews were conducted in a private interview room in the Northern
California Children's Hematology and Oncology Medical Group, Sacramento clinic or at
their local public library. Prior to the actual interview and completion of the
questionnaire, each participant received a description of the research and a list of support
resources with contact information. Participants were also told the interview would be
digitally recorded, were asked to sign a consent form (see Appendices D and E), and
were provided with a copy of their sign informed consent form. A total of four
standardized questions were posed to each participant in an open-ended interview
manner, and the BAS was completed by each participant. The meeting with each
participant lasted between 50 minutes to 1 hour and 15 minutes in length.
Data Analysis
Following the interviews, all the digital recordings for each interview were
transcribed verbatim and translated into English by the researcher. A content analysis
was then conducted on the written version of the responses. The researcher was looking
for common themes amongst responses. This classification was useful in summarizing
meaningful trends that would provide preliminary answers to the questions posed.
Consequently, common themes were then developed and described within the context of
the literature and theoretical frameworks reviewed for this study. Both latent and
manifest analyses were conducted.
Following the completion of the Likert scaling Bidimensional Acculturation Scale
for Hispanics (BAS) questionnaire by all 10 participants, the instruments were scored.
51
Consequently, each participant received an acculturation score and a frequency
distribution was provided.
Protection of Human Subjects
As required by California State University, Sacramento, a human subject
application was submitted to the Committee for the Protection of Human Subjects from
the Division of Social Work. This committee approved the proposed study and
determined the research as "minimal risk" to the study participants and the approval
number is 10-11-12. The approval was received prior to the collection of any research
data.
Participation in this research study by parents of pediatric oncology patients was
on a strictly voluntary basis. Participants were informed in writing and verbally of their
right to decline to answer questions or stop the interview or completion of the
questionnaire at any time and for any reason. To protect the identity of the participants,
participants were told to not use their name or that of their family members during the
interview. Participants were instructed to use "pseudo" names.
All information received during the interview and completion of the BAS was
confidential. Privacy was maintained through separating consent forms from any
questionnaire completed materials and separately locking all of the completed
questionnaires, interviews and forms. All the digital recordings and transcribed materials
were stored in a locked cabinet and were immediately destroyed after being transcribed.
All interview materials were destroyed by June of 2011. This information was described
52
in the participant's consent form in English (see Appendix D) and in Spanish (see
Appendix E), which was signed prior to the interview or questionnaire completion taking
place.
Summary
This chapter focused on the qualitative and quantitative research design employed
(content analysis and survey research) used for this study. A description of the study
population and the sampling technique used was also discussed in this chapter.
Additionally, this chapter described the methods for collecting, reporting and analyzing
the data as well as reviewed the procedure to protect the human subjects.
53
Chapter 4
DATA ANALYSIS
Interviews and acculturation measures were conducted with 10 individuals, all
who identified themselves to be a parent of a child who is currently receiving medical
care at a pediatric oncology clinic. The clinic was located in Northern California. All
participants were born in a Spanish speaking country: eight women were born in Mexico,
and two in El Salvador. All participants had arrived to the United States either in their
late teens or as adults: two women at age 17, one woman at age 19, three women at age
20, one woman at age 23, one woman at age 24, one woman at age 34, and one woman at
age 35. At the time of the interviews the participants had resided in the United States for
several years: two for five years, one for six years, one for seven years, one for 10 years,
two for 16 years, one for 18 years, one for 20 years, and one for 21 years. The amount of
education completed by participants in their country of origin varied. One participant had
completed the third grade, one the fifth grade, two the sixth grade, three the ninth grade,
one the 11th grade, and two the 12th grade. Additionally, five participants had taken
English classes for adult learners soon after their arrival to the United States: one for
three months, one for four months, two for one year, and one for two years. All
participants were given fictitious names, as follows: Amanda, Danielle, Isabel, Laura,
Lisa, Melissa, Nathalie, Sara, Sofia, and Vanessa.
The objective of the study is to investigate whether, and to what extent, does
acculturation affect the likelihood that Latino parents of pediatric oncology patients make
54
use of support services offered to patients and their families at a pediatric oncology
clinic. The specific research question was: Does acculturation affect the likelihood that
Latino parents of pediatric oncology patients make use of support services offered to
patients and their families at a pediatric oncology clinic? The intent driving the
exploration of this issue is to develop a deeper appreciation on the effect of acculturation
on everyday decisions, in particular during a critical time such as the treatment of
childhood cancer.
In order to measure each participant's acculturation level, participants were asked
the 24-item set of questions from the Bidimensional Acculturation Scale for Hispanics
(BAS). This scale was designed to measure acculturation among Hispanics. The BAS
provides an acculturation score for two major cultural dimensions—Hispanic or nonHispanic—in order to define the level of acculturation of the respondent. The scale has
three language-related factors: the language use subscale (items 1-6); the linguistic
proficiency subscale (items 7-18); and the electronic media subscale (items 19-24). The
BAS provides two scores by cultural dimension as well as a biculturation score, which
would be indicated by high scores in both cultural domains (Hispanic and non-Hispanic).
Participants were allowed to choose to answer the BAS in English or in Spanish (two
identical linguistic versions were made available to each respondent). All the participants
opted for the Spanish version. Table 1 shows the level of acculturation for each
respondent. All but two respondents have a low acculturation score. No other statistical
tests were conducted because of the sample size of 10.
55
Table 1
Respondents by Level of Acculturation
Non-Hispanic Domain
Hispanic Domain
Average
Average
BAS ≥ 2.5
BAS < 2.5
BAS ≥ 2.5
BAS < 2.5
(High)
(Low)
(High)
(Low)
Amanda
●
●
Low
Danielle
●
●
Low
Isabel
●
●
Low
Laura
●
●
Low
Lisa
●
●
Low
●
Bicultural
●
Low
●
Bicultural
Name
Melissa
●
●
Nathalie
●
Sara
Acculturation
Sofia
●
●
Low
Vanessa
●
●
Low
Additionally, all participants were asked a set of three questions regarding their
former and current use of any support services for their child, family, and/or themselves
that have been offered to them at a pediatric oncology clinic; to identify the support
services they have used or are currently using; explain why they chose to make use of
these support services for themselves and/or their family; and if they have not decided to
56
use a/some support service(s), describe why they decided not to use these support
services. A number of themes became evident to facilitate the explanation acculturation
effects on the likelihood of Latino parents making use of support services for their child
and family offered at a pediatric oncology clinic: (1) language barrier; (2) migratory
status; and (3) strong work ethic. The author conducted all the interviews and survey
questions in Spanish as requested by the participants. A summary concludes this chapter.
Language Barrier
Eight of the participants reported in interviews that the lack of being able to speak
or comprehend English fluently has made it more difficult to learn about and access
support services available to their child and their family. Eight of the participants
reported that if it were not for the pediatric oncology clinic using medical interpreters,
they would not have learned about the valuable support programs available to them and
their families.
Sofia, whose BAS score reflected high acculturation in the Hispanic domain and
low acculturation in the non-Hispanic domain, explained:
It was thanks to the support and assistance offered to us by the social workers
who used interpreters to communicate with us, at the pediatric oncology clinic,
that my husband and I were able to find out about support services available to us,
which have greatly benefitted my daughter and our family. (Translation)
Due to the social workers working with Sofia and her family, using interpreters to
communicate with Sofia and her family, Sofia and her husband were able to access and
57
utilize support services that they were not aware existed or much less even had access to
in their community. Sofia tearfully stated,
I still recall the day my daughter was diagnosed with leukemia. As the doctor
explained to my husband and I my daughter's disease and her prognosis, through
an interpreter, I thought how are we going to get through this? How are we going
to be able to afford her treatment? How are we going to ensure that our daughter
receives the best care when we are unable to communicate in English? Yet, my
fears were soon calmed when the social worker explained to my husband and I
that we were eligible to receive additional medical insurance that would cover my
daughter's treatment and would have access to other financial and emotional
support services to assist my daughter and our family during this time of crisis.
We were able to learn about these support services because the social worker used
an interpreter and because we were able to also use the interpreter to
communicate our concerns and needs. It was a great relief. We were informed
about and received guidance to apply for CCS [California Children Services:
Medical Insurance], SSI [Supplemental Security Income], gas cards, Make-AWish, and The Sharing Place. (Translation)
Sofia's ability to communicate her concerns and needs to her daughter's medical
team by using a medical interpreter also allowed Sofia and her family to access support
services that were appropriate and met their needs. Sofia explained that these support
services to this day continue to play a crucial role in the treatment of her daughter's
58
leukemia as they help to lighten the load for the entire family financially, physically, and
emotionally. Bodkin et al. (1982) and Lansky et al. (2006) expose that medical costs to
families with children being treated for cancer were found to be much less than the
nonmedical costs incurred during their children's treatment. Studies have revealed that
beginning from the first week of treatment, and even throughout outpatient treatment, the
loss of income plus additional expenditure amounts from 20% to 50% of income for the
majority of these families (Bodkin et al., 1982; Lansky et al., 2006).
Danielle, whose BAS score reflected high acculturation in the Hispanic domain
and low acculturation in the non-Hispanic domain, shared her fear of the language
barrier:
Neither my husband nor I speak English, so when we arrived to the pediatric
oncology clinic we were afraid because we were concerned that we would not be
able to understand our son's diagnosis, prognosis, and not know how to access the
medical care he would be in need of to treat his leukemia. I was terrified that our
language barrier would prevent my son from receiving the care he was in need of.
However, I was pleasantly surprised and relief when a medical interpreter was
provided and after learning about my son's illness, the social worker was able to
inform us about the programs available to assist us with additional financial and
emotional support. To this day, we continue to use an interpreter at the clinic to
ensure that we are well informed in order to ensure that our son's needs are met.
(Translation)
59
Nathalie, whose BAS score reflected high acculturation in the Hispanic domain
and low acculturation in the non-Hispanic domain, reported:
When my son was diagnosed with cancer our family was in dire need of support,
however I did not know how to communicate this since I do not speak English
well. I had no form of transportation to get my son to his chemotherapy
appointments due to not knowing how to drive and not having family or friend
support. Even though the clinic's social worker did not speak Spanish she helped
my son and I significantly. She ensured to have an interpreter available to us
during our appointments. It was only this way that I was able to express my
transportation problem and she was able to link my son and I with the American
Cancer Society's Road to Recovery Program which provided us with
transportation to and from my son's medical appointments. (Translation)
These narratives exemplify some of the barriers, language problems and
transportation difficulties that the literature indicates Hispanic parents with minimal
acculturation to the non-Hispanic domain have identified as being the major access
barriers to health care and support services for Latino children (Flores et al., 1998; Flores
et al., 2002). Literature has exposed that these barriers, in addition to others: culture
differences, poverty, lack of health insurance, and long waiting times have led to poor
medical care, misdiagnosis, prescription of inappropriate medication, and lack of other
support services (Flores et al., 1998; Flores & Tomany-Korman, 2008). Furthermore,
Latino children have been found to be more likely to encounter problems obtaining a
60
usual source of medical care, not receiving all of their prescription medications, and
having problems receiving specialty care (Flores et al., 2008).
In the cases presented in this work, the language barriers likely would have
prevented parents from accessing support services, which in turn could have prevented
their children from receiving appropriate medical attention, and physical and financial
support. Yet, this language barrier was overcome by the use of an interpreter; and it was
only this intervention that participants agree allowed them to access support services that
they were not aware existed for their use. Participants explained that the medical team,
specifically the social worker, possessed imperative knowledge about support services
that are of great relief. However, without the ability to communicate with the participants
in their primary language, these support services would be essentially moot and would
not achieve their purpose: to assist in handling the multiple issues confronting them at
each stage of illness. This relationship between language and access is highlighted by the
literature, which reveals most families have never had any direct experience with cancer
or any other serious illness, much less with the complex system of health care (Lauria et
al., 2001; McCubbin et al., 2004).
The eight participants who reported that the language barrier made it more
difficult to learn about and access support services available to their children and their
families, all scored low in the non-Hispanic acculturation domain. Their length of
residence in the United States ranged from 5-20 years. The bicultural socialization theory
suggests that a bicultural socialization process may take place and that the mastery of
61
both cultures can be achieved (Robins et al., 1998); however, according to their BAS
scores these participants have not achieved this mastery. According to Robins et al., a
person who gains bicultural competency “integrates positive qualities of his/her culture of
origin and the dominant society’s culture. The outcome is a functional way of relating
and surviving in both cultures” (p. 128). Yet, these eight participants have made it clear
that their inability to have command of the English language has made it a challenge to
survive in the dominant society and have had to realize this when facing a serious illness.
According to Robins et al. (1998), bicultural socialization involves bicultural
conflict and, many times, bicultural tension. Bicultural conflict takes place when a
person’s family values and behaviors are different from those of the society at large.
Accordingly, there is a high level of mismatch or contrast between family values and
societal values (Robins et al., 1998). Therefore, in order to function in both mainstream
and minority contexts, individuals have to develop coping skills in both contexts to guide
them to adapt to both sets of demands. In this research, the eight participants seem not to
have been able to develop these coping skills. Lacking the ability to communicate in
English has led the participants to experience bicultural tension.
Bicultural tension is said to take place when “an individual’s available coping
skills are based on only one value system: either that of the family or that of society. The
individual is not able to use his or her coping skills in both family and societal situations”
(Robins et al., 1998, p. 129). Accordingly, these participants have developed fragile
coping skills for the implementation in the non-Hispanic domain.
62
According to bicultural socialization theory, the process of acculturation can
occur and the mastery of both cultures can be achieved. Yet, this mastery depends on an
individual’s ability to develop a coping repertoire that is adequate to deal with bicultural
conflict. However, Robins et al. (1998) explain that developing adequate coping skills is
not only a matter of personal choice; this also depends on the “degree of support or
rejection experienced from the culture of origin and the new cultural context” (p. 129).
Sara, whose BAS score reflected high acculturation in the Hispanic domain and
high acculturation in the non-Hispanic domain, verbalized that language did not prevent
her from learning about and accessing support services:
Soon after my son's diagnosis my husband and I learned about SSI benefits,
agencies that assist families with gas cards due to our lengthy commute, Make-AWish, Camp Okizu, art therapy for our son and his siblings, and support groups
for parents. My family has utilized the majority of these services, however I never
participated in the parent support group even though I would have wanted to,
especially during the initial stage of my son's diagnosis when I felt the desperate
need to relate to others who were or had experienced what I was living... Even
though I am fluent in both languages I would have wanted to partake in a Spanish
speaking support group in order to be able to express my emotions in my primary
language, without the fear of not being understood, however I never learned about
a support group for parents offered in Spanish. (Translation)
63
Despite language not being a concern for Sara to learn about and access support
services, Sara did not utilize parent support groups that are designed to address the
concerns of parents/caregivers. These support groups offer parents/caregivers the
opportunity to share information, thoughts, and experiences that will enable them to cope
with feelings of depression, isolation, and immobilization (Stearns et al., 1993).
Unfortunately, Sara was unable to participate in a support group offered in her primary
language, at a time when she would have perhaps greatly benefitted from a support
group's purpose.
Melissa, whose BAS score reflected high acculturation in both the Hispanic
domain and the non-Hispanic domain, expressed a similar experience:
At the pediatric oncology clinic my family and I learned about CCS, SSI, MakeA-Wish, Camp Okizu, Super Sibs, art therapy for my daughter and my other two
children, and a parent support group. We have been very fortunate to be able to
have access to these support services and have used them all but the parent
support group. My husband and I feel comfortable speaking English, however I
would have preferred to participate in a Spanish speaking support group. When it
comes to expressing my emotions, fears, and concerns with others who are also
facing such a scary illness I want to do this in my primary language, the language
I cry and celebrate in. (Translation)
Sara and Melissa have scored high level in both cultural domains, thus successfully
having achieving the goal of acculturation—or biculturalism, the mastery of both cultures
64
(Robins et al., 1998). However, Sara and Melissa were not able to access emotional
support due to it not being offered in their language of preference, their language of
comfort.
Literature instructs that language-related variables are crucial to the culture
learning process and to sociocultural adaptation, since they are considered key elements
in language acquisition and effective intercultural communication (Masgoret & Gardner,
2003). Studies have established that attitude and motivation influence how successful an
individual will be in learning another language (Masgoret & Gardner, 2003). Danielle
stated,
My husband and I took my son and his brother to the art therapy group for its five
week session. Even though neither my husband nor I speak English, we felt that
our children would greatly benefit from this therapy, as they would be able to
relate with other children facing childhood cancer. Due to the language barrier
we, the parents, were not able to fully participate in the group, but after each
session my husband and I would try to speak our poor English with the facilitator
and the other parents as we were motivated to assist our children and were
encouraged to participate by the facilitator and the other parents. Everyone was so
nice and helpful. I think my English improved a little after the art therapy group
came to its end. (Translation)
Danielle's experience demonstrated the desire to become biculturally integrated
due to the desire to support their children. The predominant thought of acculturation has
65
posited that minorities react to prolonged intercultural contact by assimilating to the
dominant society, by separating from it, or by becoming bicultural, either successfully as
with bicultural integration or unsuccessfully as with bicultural marginalization (Rudmin,
2003a).
Migratory Status
Seven of the participants reported in interviews a great concern with accessing
support programs due to the fear of being deported if their undocumented migratory
status was revealed to immigration authorities. However, these participants also reported
throughout their interviews that their ill child was born in the United States, thus having
American citizenship.
Amanda, whose BAS score reflected high acculturation in the Hispanic domain
and low acculturation in the non-Hispanic domain, explained:
It took us a long time after our son was diagnosed with leukemia to apply for SSI
for him. The social worker had explained to us that our son was very likely to
qualify to receive SSI due to his diagnosis, our family income, and because my
son was an American citizen. Even though we were experiencing extreme
financial hardship we did not apply due to being concern that it would be revealed
that my husband and I are undocumented. It was until I ran into other Spanish
speaking parents under our same circumstances that I was reassured that our
migratory status would not prevent my son from receiving financial assistance
and would not have us deported. Due to our fear we missed out about six months
66
of financial assistance that would have significantly helped us during the initial
stage of my son's diagnosis (Translation)
A child citizen of the United States who is diagnosed with cancer is eligible to
receive Supplemental Security Income (SSI), a Federal income supplement program
funded by general tax revenue, regardless of the parents' immigration status (U.S. Social
Security Administration, 2010). This supplemental income is designed to help those who
have little or no income. The monthly cash income is to assist with basic needs, such as
food, clothing, and shelter for the child and child's family (U.S. Social Security
Administration, 2010).
Lisa, whose BAS score reflected high acculturation in the Hispanic domain and
low acculturation in the non-Hispanic domain, reported:
When my son was diagnosed with a brain tumor we were inconsolable. My son
required frequent and lengthy hospitalizations for his treatment. We live up in the
mountains, so there were times extreme weather conditions did not permit us to
drive to Sacramento for treatment. The clinic's social worker explained to us that
she wanted to make a referral to an agency that would assist my son and our
family by flying us to Sacramento in order for my son's treatment not be delayed.
I recall being concerned that through this referral our undocumented migratory
status would be revealed and my husband and I would be deported, and my son
would be left without his parents' support and alone in this country that was
providing his with superb medical treatment. We gratefully accepted the referral
67
and with great appreciation welcomed the assistance, but we feared a knock at our
door by immigration authorities. (Translation)
Literature shows there are charitable organizations offering additional financial
and transportation assistance without regard for a child's or parents' immigration status.
However, the recent rise of anti-immigrant sentiment in the United States may be
augmenting the fear of being deported, as across the country hundreds of bills targeting
Hispanic immigrants have been proposed and/or enacted. A reflection of this antiimmigrant sentiment is the State of Arizona's enactment, on April 23, 2010, of the
nation's toughest bill, Arizona Senate Bill 1070, on illegal immigration. This bill aims to
identify, prosecute and deport illegal immigrants (Archibold, 2010).
Isabel, whose BAS score reflected high acculturation in the Hispanic domain and
low acculturation in the non-Hispanic domain, stated:
Immigrants are continuously being attacked, there seems to be an anti-immigrant
sentiment everywhere I turn. I think this is why my family and I have not taken
advantage of other support services that may be of great benefit for my family and
me. But the fear of deportation is so great that we only concentrate on ensuring
that our son receives his medical treatment and we deal with any additional needs
on our own in order to avoid our family being separated. (Translation)
Nathalie, tearfully explained:
When we learned about my son's cancer my husband and I thought how are we
going to pay for his treatment? We knew that we could not afford the medical
68
attention he required, and we feared that our migratory status would prevent him
from qualifying for any medical assistance. We were afraid. The clinic's social
worker explained to us that my son was eligible for CCS. I still recall the anxiety I
experiences as I applied for CCS for my son and fearing that they would ask for
my social security number, I thought now they have our address so immigration
can find us and take me and my husband away from our son, or maybe my son
will not qualify because my husband and I are undocumented. Fortunately, they
never asked for our social security numbers and they generously assisted us with
my son's medical care. Something that we will forever be grateful for.
(Translation)
Through the interviews, participants voluntarily disclosed their migratory status.
Seven of the participants who reported being afraid of being deported and separated from
their families as a factor that prevented or caused hesitation for them to access support
services. The BAS scores of those seven reflected low acculturation in the non-Hispanic
domain.
The remaining participants did not verbalize migratory status as being a factor
preventing them from utilizing support services. One of these participants' BAS score
reflected low acculturation to the non-Hispanic domain, and resides legally in the United
States. The other two participants, whose BAS score reflected high acculturation in both
the Hispanic and non-Hispanic domain, also reside legally in the United States. This data
confirms literature asserting that individual factors affect the Hispanic acculturation
69
process such as legal and residency status (Berry, 1997a; Berry & Sam, 1996; Cabassa,
2003).
Strong Work Ethic
All 10 of the study participants reported in interviews that their strong work ethic
caused hesitation to access all the support services they were made aware of or offered.
Laura, whose BAS score reflected high acculturation in the Hispanic domain and low
acculturation in the non-Hispanic domain, explained:
My family and I have never used any government aid. My husband and I have
always provided for our children by either one of us or both of us working. When
my husband lost his health insurance we realized that we could not pay out of
pocket for our son's medical care, it was difficult to digest this since we had never
applied for any kind of aid. We applied for CCS, and this is how my son's medical
care has been paid for. This is the only support service we have utilized since our
boy's leukemia diagnosis as we continue to attempt to work hard to be able to
provide our family's needs. (Translation)
The work ethic reasoning was common across all participants, and perhaps
indicates one reason why general use of public benefits by immigrants is so low (National
Immigration Law Center, 2006). Immigrants are reported to use less health care on
average than U.S. citizens, and low-income immigrants are less likely to receive public
benefits than are U.S. citizens (National Immigration Law Center, 2006). A similar
sentiment was verbalized by other participants. Danielle reported:
70
My husband and I have always provided for our family, but when our son was
diagnosed with leukemia I was forced to stop working due to the amount of time I
needed off from work to take my son to his doctor appointments. When I applied
for SSI, it felt wrong. We had never asked for money and now here we were
asking for financial assistance. We came to this country with the intent to provide
for our family and not to be provided for. It is necessity that has had us access
financial assistance. I would rather work hard every day of the rest of my life
instead of having my child sick. (Translation)
Nathalie, tearfully, explained:
I will be honest with you, necessity is what had me access support services. One
comes to this country to work hard and not to use services that do not correspond
to one [the utilization of public benefits that are developed for U.S. citizens].
However, when one is in a moment of crisis, as it relates to your child's life, one
accepts the assistance one is offered. We immediately applied for CCS, as we did
not have the money to pay for his medical care. And we did not have private
health insurance, when the doctors informed us that if our son did not receive
immediate medical attention he would die. Therefore, it was only out of necessity
that we utilized CCS, and any other support services that have been offered to us.
We do not seek them out. (Translation)
This viewpoint is common amongst first generation immigrants as hard work and the
aspiration to provide for themselves and their families is highly valued (Lopez, 2001).
71
Despite immigrants making a variety of economic contribution with their labor to the
United States and are obligated to pay taxes that fund these public services (National
Immigration Law Center, 2006), all participants did not feel entitled to these public
services nor themselves or their children.
Sofia stated:
In our native country [Mexico] we are taught to work hard, one has to work hard
in order to be able to provide for one's family. Unfortunately, the corruption that
exists in our native country prevented our hard work to provide for our family the
way we wanted, for example: with an education for our children and with the
possibility to put money away in order to have when we are no longer able to
work due to our age. My husband and I have always worked hard, we abandoned
our humble home to come to this country to work hard to achieve the American
dream, prosperity and opportunity. Today, my husband continues to work hard,
even though he was recently laid off and now depends on side jobs for work. And,
sadly we must also depend on SSI to provide for our daughter during this time
that is equally financially demanding as emotionally demanding. (Translation)
This strong work ethic is common among Hispanic immigrants, who are similar
to previous immigrant groups who have come to the United States in search of economic
opportunity and to join family members. Hispanic immigrants share the aspirations for
the future as they work hard toward attaining a better way of life; often referred to as the
"American way" (Peñaloza, 1994). Literature indicates that the majority of immigrants
72
do not intend to return to their countries of origin, even when their acculturation
experience fails to meet their expectations. However, their desire to better their quality of
life by working hard to make it a reality tends to be the principal motivator for migration
and to remain in a foreign country despite their acculturation experience (Furnham &
Bochner, 1986). It is believed that the motivating factors to migrate include deprivation
of full employment opportunities, education, health and housing in the country of origin
(Furnham & Bochner, 1986).
Despite participants' acculturation level, all participants verbalized their hesitation
to seek support services due to their belief that they were able to provide for themselves
and not depend on others for assistance. Psychological adaptations to acculturation are
considered to be a matter of learning a new behavioral repertoire that is appropriate for
the new cultural context. Thus, it is natural for some "culture shedding" (Berry, 1992).
Culture shedding is the release of aspects of one's previous repertoire that are no longer
appropriate amid the new society. The participants verbalized that their strong work
ethic, providing for themselves and their families, instead of being provided for, conflicts
with the support services being offered to them and their families. During this culture
shedding, facing the circumstances of not being able to provide for their family due to
their child's illness, there is "culture conflict," not feeling comfortable seeking financial
assistance or other support services. These incompatible behaviors create difficulties for
the individual and these must be sorted out (Berry, 1992). This conflict leads individuals
to experience "acculturative stress" if individuals are not easily able to change their
73
repertoire (Berry et al., 1987). The interviews have revealed that this acculturation stress
leads families to delay or not even access assistance that is meant to alleviate some
emotional, physical, and financial demands that childhood cancer can have on the entire
family.
Summary
In this chapter, the data from the study was analyzed and discussed. Chapter 5 is
a description of the conclusions and recommendations. The limitations of this study and
the implication for social work practice and policy will also be discussed.
74
Chapter 5
CONCLUSIONS AND RECOMMENDATIONS
Conclusions
According to the 2010 Census Bureau, more than half of the total population
growth of the United States between 2000 and 2010 was from the Hispanic population
(U.S. Census Bureau, 2010). In 2010, there were 50.5 million Hispanics in the United
States, making 16% of the total population in the United States. The U.S. Census Bureau
reports that between 2000 and 2010, the Hispanic population grew by 43%—rising from
35.3 million in 2000, when at this time the Hispanic population was 13% of the total
population in the United States. Amongst this fast growing minority population,
childhood cancer is the second-leading cause of death among Hispanic children, ages 014 years, and the fourth-leading cause of death among adolescents age 15-19 years
(American Cancer Society, 2010a). These facts add a more wide-view perspective to the
very particular needs of this population during a time of crisis—coping with childhood
cancer.
This study was undertaken in an attempt to better understand if acculturation
affects the likelihood that Latino parents of pediatric oncology patients make use of
support services offered to patients and their families at a pediatric oncology clinic. By
interviewing Hispanic parents who currently have a child receiving oncology treatment, it
was hoped that their insight would disclose the affect of acculturation in them utilizing or
not utilizing support services for their child and/or their family.
75
The mothers in this study were open and honest in discussing their experiences.
They willingly provided their expertise on the subject even though doing so drew some
painful memories. The frankness and detail with which the participants answered the
questionnaire, in order to measure their acculturation level and conveyed their stories,
were vital in compiling an accurate analysis of the reasons why they have either made use
or not made use of support services for their child and/or their family.
It was revealed, through the participants' completion of the Bidimensional
Acculturation Scale for Hispanics (BAS), that 8 of the 10 participants had a low
acculturation score. Consequently, according to the bicultural socialization process of
acculturation, 8 of the 10 participants have not fully developed coping skills to adapt and
function in the mainstream context.
The study found those participants who had a low acculturation score reported
that the language barrier made it difficult to learn about and access support services
available to their child and their family. T he eight mothers with a low acculturation score
reported that their inability to speak or comprehend English with ease prevented or
delayed them from utilizing emotional, physical, and financial support services offered to
them and their family. These eight participants reported that if it were not for the medical
interpreters at the pediatric oncology clinic, they would not have learned about some of
the valuable support programs available and developed specifically to assist them with
the demands of coping with childhood cancer.
76
Furthermore, the study found that those participants whose BAS scores reflected
high acculturation in the Hispanic and the non-Hispanic domain, thus being bicultural,
did not feel that language prevented them from learning about and accessing support
services. However, unexpectedly, all 10 participants reported that language did prevent
them from utilizing emotional support services for themselves. All the participants
reported that they would have liked to participate in a parent support group, but reported
that either they had never been offered this service or had declined it due to the support
group only being offered in English. Biculturalism, the mastery of both cultures, is the
goal of acculturation (Robins et al., 1998). Despite two of the participants scoring high
level in both cultural domains and successfully achieving biculturalism, these mothers
were not able to make use of desired emotional support due to it not being offered in their
primary language (Spanish—their language of preference and comfort).
The study found that participants' migratory status either prevented or delayed the
use of support services. Seven of the participants, who happened to also have a low
acculturation score, reported when learning of support services hesitating to access these
services because they feared being deported. They reported being afraid that their
undocumented migratory status would be disclosed to immigration authorities, and the
consequence would be being deported to their country of origin and having their family
separated.
Additionally, the study revealed that participants' strong work ethic either caused
reluctance to access support services they were made aware of, or to not access support
77
services at all. The work ethic reasoning was common across all participants, despite
acculturation level. All participants reported coming to the United States with the
objective to work hard and with the desire to provide for themselves and their families.
Researchers indicate that this viewpoint is common and highly valued amongst first
generation immigrants (Lopez, 2001; Peñaloza, 1994).
The findings of this study are in agreement with the literature. Bicultural
socialization theory suggests that a bicultural socialization process of acculturation can
take place and that the mastery of both cultures can be achieved (Robins et al., 1998). An
individual who gains bicultural competency "integrates positive qualities of his/her
culture of origin and the dominant society's culture" (Robins et al., 1998, p. 128).
Consequently, the outcome is a functional way of relating and surviving in both cultures.
However, in order to be able to function in both mainstream and minority contexts, ethnic
minorities must develop coping skills in both contexts to guide them to adapt to both sets
of demands.
Therefore, if an individual is unable to develop these coping skills the individual
is likely to experience bicultural tension (Robins et al., 1998). The participants who had
a low acculturation score experienced bicultural tension as their coping skills are based
on only one value system—their culture of origin. Consequently, these parents were not
aware of all the support services available to them and their families, had delayed the
utilization of support services, and/or had declined support services. Nevertheless, those
78
participants that had a high acculturation score had declined to utilize emotional support
services for themselves due to their not feeling comfortable with the English language.
This study also confirmed literature, which stresses that individual factors also
affect the acculturation process. There is a need to take into account demographics
during and after settlement, age at time of settlement, legal and residency status, cultural
distance between culture of origin and culture of settlement, time in the new culture, and
expectations for life in the new culture (Berry, 1997a, Berry & Sam, 1996; Cabassa,
2003). Each participant's acculturation process undeniably had been very different and
consequently had influenced their lack or mastery of acculturation.
These findings may indicate why general use of public benefits by immigrants is
so low, as indicated by some studies (National Immigration Law Center, 2006).
Immigrants are reported to use less health care on average than U.S. citizens, and lowincome immigrants are less likely to receive public benefits than are U.S. citizens
(National Immigration Law Center, 2006).
Recommendations
Based on the findings of this study, recommendations can be made to both
practitioners and researchers. The following two subsections, practice related and
research related, consider these two areas separately.
Practice Related
Clinical recommendations from this study include recognizing the utility of some
form of acculturative assessment, be it in a questionnaire, or merely an attentive
79
interaction with the clients and patients by staff members. It is vital for providers to not
assume that parents are aware of the support services available to them and that they
understand what they entail. Providers must take the initiative to discern that parents'
smiling and/or nodding cannot be interpreted as comprehension. This study has shed
light on the necessity for medical interpreters in order to ensure that parents are able to
express their needs, concerns, and fears and in order for providers to be able to assist
them with their needs. Medical interpreters may be essential for conveying messages
from various clinicians to patient; however this study indicates that in some cases the
interpreter may actually change the nature of services offered and accepted. Language
and acculturation can thus be viewed as influencing some of the more significant aspects
of healthcare interactions. Healthcare providers would do well—both for the sake of
offering quality care and in order to best care for their clients and patients—to at a
minimum take acculturation of non-native English speakers into account. While the
population sample size of this study does not promote great extrapolation of its results, at
a minimum the study suggests that acculturation levels will affect the type, degree and
quality of care received by a good deal of immigrant patients.
Future Research
This study could be applied to future qualitative and quantitative studies. All the
participants were mothers. It would be productive to have fathers participate in the study
to determine the role of gender between their usage or lack of usage of support services.
Additional insight would probably suggest other reasons why support services are not
80
being used by parents or their families. In general, based on the limited numbers of
participants, there is a need for this study to be applied to a greater population of
participants. As with any study, larger population studies would provide for more
accurate results, more concrete identification of trends, and create a more reliable means
while being able to isolate the outliers.
Limitations
The most significant limitations of this study is the size of the sample. Only 10
participants took part in this study. T he study used a purposive sampling method. For
this study, it was important to interview parents of children who are currently receiving
oncology treatment in order to ensure that the data acquired was current and relevant.
However, there is a need for larger sample size—and likely including males in the
study—in order to establish whether the results of this study can be generalized to the
Hispanic-cultured as a whole, or whether this work's implications are limited to these
women in this study.
Furthermore, either the Bidimensional Acculturation Scale for Hispanics (BAS)
or interview questions should include individual factors that also affect the acculturation
process: demographics during and after settlement, age at time of settlement, legal and
residency status, cultural distance between culture of origin and culture of settlement,
time in the new culture, and expectations for life in the new culture. Doing so would
enable more accurate assessment of individual acculturation levels.
81
Implications for Social Work Practice and Policy
Childhood cancer is emotionally, physically, and financially demanding on the
entire family, but often the negative impact can be lessened through support services
introduced in a pediatric oncology clinic. All children and families require some
assistance in handling the multiple issues facing them at each illness stage. The reality is
that most families have never had any direct experience with cancer or with the complex
system of health care. To counterbalance this deficit, programs provide emotional
support mechanisms to meet the unique psychosocial needs of the patient and family:
financial assistance to assist with medical bills, food, shelter, lengthy hospitalizations,
and loss of wages; and physical assistance to assist with transportation, lodging, and
making patients' wishes a reality. However, as this study has revealed, these support
services that have been specifically developed to assist children fighting cancer and their
families are not being fully utilized by parents with low acculturation and their families.
Consequently, at the micro level social workers must become educated about the
affect of acculturation amongst Spanish speaking parents, particularly first generation
Hispanics. Working from that understanding, social workers need to recognize the
cultural pressures, migratory status worries, and simple lack of knowledge and
comprehension that many people like the participants in this study experience. Without
the action of social workers—in concert with other professionals—an entire demographic
of healthcare clientele is being left behind.
82
Opportunities exist for social work practice at the mezzo level. The information
revealed and examined in this study could be utilized by other pediatric oncology clinics
in educating their staff. Social workers, medical providers, nurses, and child life
specialists—who work directly and on a regular basis with patients and their families—
would benefit from being aware of the effect acculturation has on their patients and their
families. Specifically, the need to use medical interpreters, and to ensure that patients
and families are receiving the appropriate support services, cannot be underestimated.
Furthermore, there is a pressing need for social workers to offer emotional support—e.g.,
parent support groups—in Spanish to allow Spanish-speaking parents to share
information, thoughts, and experiences that will enable them to cope with feelings of
depression, isolation, and immobilization during their child's medical treatment in their
language of comfort.
At the macro level, social workers have an opportunity to work on issues of social
justice not only for the Hispanic population, but also for other minority populations in the
medical arena, at the state and federal level. In 2003, California became the first state in
the U.S. to pass a law, Senate Bill 853, requiring health insurance organizations to
provide interpreting and translation services (at least by phone) to patients with limited
English proficiency (Au, Taylor, & Gold, 2009). Social workers have both an individual
and a collective voice that needs to be used and heard on behalf of their clients to
advocate for their clients' voices to be heard especially during a crucial time, as it is when
navigating our complex health care system.
83
The social work profession is bound by a code of ethics, a set of core values that
set social workers apart from other helping professions. Therefore in order for social
workers to be committed to their clients, help those in need, address social problems,
social workers have the responsibility to be culturally competent and socially diverse.
According to National Association of Social Workers (NASW) Code of Ethics, "social
workers should understand culture and function in human behavior and society,
recognizing the strengths that exist in all cultures" (p. 9). Therefore, when social workers
work with Hispanic families they should be aware of the effect acculturation has in
making choices in order to appropriately approach and work with Hispanic parents.
Conclusion
This research suggests that acculturation does affect the likelihood of Hispanic
parents utilizing support services for their family and themselves. Therefore, there is a
need for further exploration and consideration of the revealed thematic areas—language
barriers, migratory status, and strong work ethic—when working with Hispanic parents in
order to ensure that these concerns are being met. Further work in those areas could also
better ensure that families are being assisted emotionally, physically, and financially by
the support services specifically developed to assist in coping with childhood cancer.
84
APPENDICES
85
APPENDIX A
Questionnaire and Interview Questions (English version)
Select a number between 4 and 1 that best applies for each item.
Language Use Subscale
Almost
always
Often
Sometimes
Almost
never
1. How often do you speak
English?
4
3
2
1
2. How often do you speak
English with your friends?
4
3
2
1
3. How often do you think in
English?
4
3
2
1
4. How often do you speak
Spanish?
4
3
2
1
5. How often do you speak in
Spanish with your friends?
4
3
2
1
6. How often do you think in
Spanish?
4
3
2
1
86
Linguistic Proficiency Subscale
Very well
Well
Poorly
Very
poorly
7. How well do you speak English?
4
3
2
1
8. How well do you read in English?
4
3
2
1
9. How well do you understand
television programs in English?
4
3
2
1
10. How well do you understand
radio programs in English?
4
3
2
1
11. How well do you write in
English?
4
3
2
1
12. How well do you understand
music in English?
4
3
2
1
13. How well do you speak Spanish?
4
3
2
1
14. How well do you read in
Spanish?
4
3
2
1
15. How well do you understand
television programs in Spanish?
4
3
2
1
16. How well do you understand
radio programs in Spanish?
4
3
2
1
17. How well do you write in
Spanish?
4
3
2
1
18. How well do you understand
music in Spanish?
4
3
2
1
Electronic Media Subscale
87
Almost
always
Often
Sometimes
Almost
never
19. How often do you watch
television programs in English?
4
3
2
1
20. How often do you listen to radio
programs in English?
4
3
2
1
21. How often do you listen to music
in English?
4
3
2
1
22. How often do you watch
television programs in Spanish?
4
3
2
1
23. How often do you listen to radio
programs in Spanish?
4
3
2
1
24. How often do you listen to music
in Spanish?
4
3
2
1
Interview questions:
1. Are you using any support services for your child and/or family that have been offered
to you
at a pediatric oncology clinic? For example: Supplemental Security Income (SSI),
Children's
Art Therapy Support Group, Children's Bereavement Art Group, Parent Support
Group, Camp
Okizu Oncology Camp, etc. If yes, please describe these support services.
2. Why did you choose to make use of the support services you and your family are
using?
3. If your answer is no, please explain why you decided to not pursue any of these
support
88
services.
4. Demographic information
1. Length of residence in the United States
2. Amount of formal education
3. Age at arrival in the United States
89
APPENDIX B
Questionnaire and Interview Questions (Spanish version)
Language Use Subscale
Casi
siempre
Frecuentemente
Algunas
veces
Casi
nunca
1. ¿Con qué frecuencia habla
usted inglés?
4
3
2
1
2. ¿Con qué frecuencia habla
usted inglés con sus amigos?
4
3
2
1
3. ¿Con qué frecuencia piensa
usted en inglés?
4
3
2
1
4. ¿Con qué frecuencia habla
usted español?
4
3
2
1
5. ¿Con qué frecuencia habla
usted en español con sus
amigos ?
4
3
2
1
6. ¿Con qué frecuencia piensa
usted en español?
4
3
2
1
90
Linguistic Proficiency Subscale
Muy
bien
Bien
No muy
bien
Muy
mal
7. ¿Qué tan bien habla usted inglés?
4
3
2
1
8. ¿Qué tan bien lee usted en inglés?
4
3
2
1
9. ¿Qué tan bien entiende usted los
programas de televisión en inglés?
4
3
2
1
10. ¿Qué tan bien entiende usted los
programas de radio en inglés?
4
3
2
1
11. ¿Qué tan bien escribe usted en inglés?
4
3
2
1
12. ¿Qué tan bien entiende usted música en
inglés?
4
3
2
1
13. ¿Qué tan bien habla usted español?
4
3
2
1
14. ¿Qué tan bien lee usted en español?
4
3
2
1
15. ¿Qué tan bien entiende usted los
programas de televisión en español?
4
3
2
1
16. ¿Qué tan bien entiende usted los
programas de radio en español?
4
3
2
1
17. ¿Qué tan bien escribe usted en
español?
4
3
2
1
18. ¿Qué tan bien entiende usted música
en español?
4
3
2
1
91
Electronic Media Subscale
Casi
siempre
Frecuentemente
Algunas
veces
Casi
nunca
19. ¿Con qué frecuencia ve usted
programas de televisión en
inglés?
4
3
2
1
20. ¿Con qué frecuencia escucha
usted programas de radio en
inglés?
4
3
2
1
21. ¿Con qué frecuencia escucha
usted música en inglés?
4
3
2
1
22. ¿Con qué frecuencia ve usted
programas de televisión en
español?
4
3
2
1
23. ¿Con qué frecuencia escucha
usted programas de radio en
español?
4
3
2
1
24.¿Con qué frecuencia escucha
usted música en español?
4
3
2
1
Preguntas de entrevista:
1. ¿Usted está usando servicios de apoyo para su hijo/a y/o para su familia que se le han
sido
ofrecidos en una clínica de oncología pediátrica? Por ejemplo: Seguridad de Ingreso
Suplementario (SSI), terapia de arte para niños y grupo de apoyo, Grupo de arte para
niños
para sobrepasar un duelo, Grupo de apoyo para los padres, Campamento Oncológico
Okizu,
etc. Si responde que sí, por favor de describir estos servicios de apoyo.
2. ¿Por qué usted decidió usar estos servicios de apoyo que usted y su familia están
usando?
92
3. Si usted contesto que no, por favor explique por qué usted decidió no usar estos
servicios de
apoyo.
4. Información demográfica:
1. Periodo de tiempo de residencia en los Estado Unidos
2. Cantidad de educación formal
3. Su edad cuando llego a los Estados Unidos
93
APPENDIX C
Letter of Support
94
APPENDIX D
Consent to Participate in Research (English version)
You are invited to participate in a research study that will be conducted by
Mariela Magnan, a graduate student at California State University, Sacramento. Mariela
Magnan is a graduate student in the division of social work conducting research as a
fulfillment of the division's master of social work program. This study will explore the
effect of acculturation on the likelihood that Latino parents will make use of services at a
pediatric oncology clinic. These services may be local to the clinic or offered as public
benefits.
Procedures:
After reviewing this form and agreeing to participate you will be given the
opportunity to set up a time at your convenience to participate in the interview. The
interview last approximately one hour. The interview will be digitally recorded. The
voice file will be transcribed and then destroyed.
As a participant in the interview you can decide at any point to not answer any
specific questions or to stop the interview.
Risks:
The discussion of some of the topics of the interview may elicit an emotional
response. You will be provided with a list of support services in the Sacramento area.
These organizations services are free of charge.
Benefits:
By being part of this study you may gain insight into the range of services
available to you and your family. Additionally, this research will help others understand
how adjustment to a non-native culture may influence how support services are
perceived amongst some Latino parents. This research will be useful in providing
complete services for pediatric oncology patients and their families.
Confidentiality:
All information is confidential and every effort will be made to protect your
anonymity. The responses given on the digital recorder will be anonymous. The
information you provide on the consent form will be stored in a secure location. All
digital recordings will be downloaded and transcribed to word files by the researcher.
This researcher's thesis advisor will have access to the transcriptions for the duration of
the project. The final research report will not include any identifying information. All
data will be destroyed upon completion of the project by May 2011.
95
Right to Withdraw:
If you decide to participate in this interview, you can withdraw at any point. In
addition, during the interview you can opt to not answer any specific question(s).
Consent to Participate as a Research Subject (Continued)
I have read the descriptive information on the research participation cover letter. I
understand that my participation is completely voluntary. My signature indicates that I
have received a copy of the research participation cover letter and I agree to participate in
the study.
I ______________________________________ agree to have my responses digitally
recorded.
Signature: ______________________________________ Date:
_________________________
If you have any questions you may contact me at (XXX) XXX-XXXX or e-mail me at
XXXXXXXXXXXXX@XXXXX.XXX.
Or, if you need further information you may contact my thesis advisor:
Maria Dinis, Ph.D., MSW
C/O California State University, Sacramento
(XXX) XXXX-XXXX
96
APPENDIX E
Consentimiento para participar en la investigación (Spanish version)
Usted está invitado/a a participar en una investigación que yo, Mariela Magnan,
una estudiante de postgrado de la División de Trabajadora Social, de la Universidad del
Estado de California, Sacramento. Yo estoy llevando a cabo esta investigación como
parte de los requisitos para la maestría para el programa de trabajadora social. Este
estudio investigará el efecto de la aculturación en la probabilidad que padres latinos
hagan uso de los servicios de apoyo ofrecidos en una clínica pediátrica de oncología.
Estos servicios pueden ser locales a la clínica o ofrecidos como beneficios públicos.
Procedimiento:
Después de repasar esta forma y aceptar participar en este estudio usted tendrá la
oportunidad de programar un tiempo que se le sea posible para participar en la entrevista.
La entrevista durará aproximadamente una hora. La entrevista será digitalmente grabada.
El archivo de voz será transcribida y luego destruida.
Como participante de la entrevista usted puede decidir, a cualquier tiempo, no
contestar una preguntas o preguntas o parar la entrevista.
Riesgos:
La discusión de unos temas de la entrevista tal vez puedan provocar reacciones
emocionales y memorias que puedan hacerlo/a sentir incomodo/a. Usted será
proporcionado/a con una lista con servicios de apoyo encontrados en el área de
Sacramento. Estos servicios son gratuitos.
Beneficios:
Al formar parte de este estudio usted tal vez obtendrá conocimiento de los tipos
de servicios disponibles a usted y su familia. Adicionalmente, esta investigación ayudará
a otros entender como la adaptación a una cultura no-nativa pueda influir como servicios
de apoyo son percibidos entre los padres latinos. Esta investigación será útil en
proveyendo servicios completos para pacientes y familias relacionadas con oncología
pediátrica.
Confidencialidad:
Toda la información es confidencial y se hará todo lo posible para proteger su
privacidad. Las respuestas dadas en la grabadora digital serán mantenidas privadas. La
información que usted provee en la forma de consentimiento será guardada en una
localización segura. Todas las grabaciones serán transferidas y transcribidas a un archivo
escrito por esta investigadora; después todas las grabaciones digitales serán
inmediatamente destruidas. La asesora de tesis de esta investigadora tendrá acceso a las
transcripciones por la duración del proyecto. El reporte final de investigación no incluirá
ninguna información de identificación. Todos los datos serán destruidos al terminarse el
proyecto para Mayo del 2011.
97
Derecho de Retirarse:
Si usted decide participar en esta entrevista, usted puede retirarse a cualquier
punto. Adicionalmente, durante la entrevista usted puede optar no contestar cualquier
pregunta(s) especifica(s).
98
Consentimiento para participar como un sujeto de investigación (Spanish version)
He leído la información descriptiva sobre la investigación en la carta de
presentación relacionada con la participación en la investigación. Yo entiendo que mi
participación es completamente voluntaria. Mi firma indica que yo he recibido una copia
de la carta de presentación relacionada con la participación en la investigación y que
estoy de acuerdo de participar en el estudio.
Yo ______________________________________ estoy de acuerdo de tener mis
respuestas grabadas digitalmente.
Firma: ______________________________________ Fecha:
_________________________
Si tiene preguntas puede ponerse en contacto conmigo a través de (XXX) XXX-XXXX o
correo electrónico XXXXXXXXXXXX@XXXXX.XXX.
O, si necesita más información puede ponerse en contacto con mi asesora de tesis:
Maria Dinis, Ph.D., MSW
C/O California State University, Sacramento
(XXX) XXX-XXXX
XXXX@XXXXXXX.XXXX.XXX
99
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