© Springer New York 2015
Grace A. Mucci and Lilibeth R. Torno (eds.)Handbook of Long Term Care of The Childhood Cancer SurvivorSpecialty Topics in Pediatric Neuropsychology10.1007/978-1-4899-7584-3_1919. Cultural and Linguistic Issues in the Assessment and Treatment of Pediatric Cancer Survivors
(1)
Loyola University, 4501 N. Charles Street, Baltimore, MD, USA
(2)
Ponce School of Medicine and Health Sciences, 7004, Ponce 00732-7004 Puerto Rico, USA
(3)
Department of Psychiatry, Penn State Milton S. Hershey Medical Center, Pennsylvania State University, Hershey, PA 17033-0850, USA
Keywords
CultureAcculturationPediatric cancerNeurocognitive functioningLanguageLinguistics19.1 Introduction
According to the Centers for Disease Control and Prevention, in excess of 16 out of every 100,000 children and adolescents are diagnosed with cancer in the United States, representing significant incidence and morbidity [1]. The most common cancers among pediatric populations include leukemia and those involving the brain and other central nervous system (CNS) substrates. With regard to mortality, the CDC reports that three out of every 100,000 children and adolescents perish from the disease and/or its complications [1, 2], making pediatric cancers the second greatest cause of mortality among children ages one to 14 years, the most lethal only after incurred accidents [3]. However, similar to other diseases in recent years, including large-scale, global, epidemic infectious diseases [4, 5], the mortality rate associated with childhood cancers has decreased, in spite of the fact that their incidence rate has slightly increased over the years [1, 2]. Improvements in the diagnosis and advancements in the treatment of childhood cancers have led to enhanced survival rates and a dramatic increase in the prolongation of life. For example, according to the National Cancer Institute’s Surveillance, Epidemiology and End Results Program (SEER), between 1978 and 1980, the 5-year survival rate among 0–19 year-olds diagnosed with brain tumors was approximately 58 % [6]. In contrast, SEER data indicates that 75 % of individuals diagnosed with a brain tumor between 0 and 19 years of age experienced a 5-year survival rate, an increase of approximately 18 % [6]. In addition, such rates have remained hovering around 77 % or greater since 1998. Therefore, and in spite of the fact that survival rates vary depending on the specific type of pediatric brain tumor (e.g., PNET v. Glioblastoma), perusal of these data reveals that the majority of childhood cancers have become chronic, treatable illnesses leading to increased survival rates. Such decreases in mortality rates and prolonged longevity have led to the increased emergence of late effects associated with pediatric cancers, and their CNS expression, coupled with the effects of their powerful treatments.
Neurocognitive consequences associated with cancers, including CNS neoplastic growths, and their complex pharmacological and/or radiological treatments, unfortunately are not uncommon in pediatric patients. In addition, they are frequently observed with a delayed onset, long after remission and survival already have been established subsequent to such interventions. Such sequelae has been shown to have significant impact on adaptation, emotional functioning, quality of life variables, socialization, and other factors impacting pediatric patients and their families, as well as brain-behavior relationships, dictated by complex genetic (host) and environmental factors, in conjunction with the disease process and potent treatments. More important, as pediatric cancers are increasingly being considered a chronic disease, particularly in resource-rich areas throughout the world with advanced medical management, it is critical to examine the presence of subtle neurodevelopmental involvement. These issues are commonly expressed in emerging higher order skills, and while controlling for putative confounds, it is possible that psychosocial factors may partially account or contribute for a large proportion of such effects rather than the primary impact of the disease process alone. As pediatric survivors mature, these variables likely have a significant impact on academic, leisure, personal, and vocational functioning, such as coping skills, medication adherence, and avoidance of risk behaviors. Therefore, neuropsychology, the science of brain-behavior relationships, and its applied clinical skills and research methods has been appropriately surmised with the task of assessing such neurocognitive sequelae and to be part of a multidisciplinary approach to treatment and scientific investigations.
Aside from other complex clinical requirements encountered and well-elucidated in the literature, from a neuropsychological and sociocultural standpoint involving assessment and treatment, there are theoretical and applied factors to consider when evaluating children and adolescents who have survived childhood cancer, including cultural and linguistic variables. Such factors are critical from various perspectives: (1) cultural and linguistic variables impact neuropsychological performance during the course of assessment [4]; (2) culture and language impact the development of the tests and norms that are used to evaluate the neurocognitive effects of cancer with ethnic minority populations and their families [4, 7]; and (3) disregarding ethnic, cultural and linguistic factors, as has been shown for other diseases and conditions [8], has significant implications for neuropsychological assessment and treatment outcome in pediatric patients with cancer [9].
This chapter will succinctly address issues associated with ethnicity, culture and linguistic variables in pediatric cancer. It will initially provide an overview of important definitions and general health care issues associated with culture and language. It will then focus on patterns of American immigration and their impact on the acquisition and application of normative data for tests used with pediatric cancer patients, followed by factors associated with linguistic variables in greater detail. Finally, the chapter will present other critical information associated with culture and ethnicity including applied factors, with the overarching goal of providing the clinician with a multicultural framework to better understand their patients’ expenence of illness.
19.2 Definition and Importance of Culture
The term culture can be defined in several ways. It has been described globally by the American Psychological Association [10] as “the embodiment of a worldview through learned and transmitted beliefs, values, and practices, including religious and spiritual traditions. It also encompasses a way of living informed by the historical, economic, ecological, and political forces on a group” (p. 380) [10]. Culture embodies and influences all facets of an individual, including cognition. “Differences in cultural background include, not just language differences, but also differences in group identity, beliefs, and values” [11]. All of these influence the patient’s utilization of services and presentation of symptoms, the assessment techniques utilized, as well as most aspects of treatment, including neuropsychological rehabilitation.
The term “culture” unfortunately has been used interchangeably with the terms “race” and “ethnicity.” This has been a source of significant confusion, as well as frequent debates, as there is no established consensus for the definition of these terms [4, 12, 13]. Historically speaking, racial categories have generally been defined on the basis of perceived physical or “biological” characteristics [12, 13]. These characteristics are not thought to be learned or changeable [14]. Ethnicity, on the other hand, can be considered as similar to culture, as both are considered learned, flexible, and passed on from generation to generation [15]. Markus [13] defines ethnicity as “a dynamic set of historically derived and institutionalized ideas and practices that…allows people to identify or to be identified with groupings of people on the basis of presumed (and usually claimed) commonalities including language, history, nation or region of origin, customs, ways of being, religion, names, physical appearance, and/or genealogy or ancestry…” (p. 654).
These distinctions are critical if we are to understand the specific factors that influence assessment and treatment. For example, the term “Hispanic” has been used to reduce a very heterogeneous group into a specific racial, rather than an ethnic, category [16]. Harris and Llorente [16] note that this “panethnic label” fails to “capture the unique attributes” of an individual including his or her unique ethnic and racial background. Even when referring to a specific Hispanic group, such as Mexican, there are several attributes to consider, including: place of birth, ancestral background, level of acculturation, and dominant language. For the purpose of this chapter, however, we will be referring mostly to the term “culture” and “cultural minorities” as outlined in the APA Guidelines cited above and in the work by Markus [13].
When examining the critical aspects of multicultural assessment and rehabilitation in pediatric cancers, it is also essential to understand patterns of American immigration. Over the past 25 years, there have been significant changes in the ethnic diversity of the United States. Over the course of two decades (1980–2000), minority populations (non-“Caucasian”) have grown 11 times faster than the “Caucasian” population [17], and immigration and population growth have dramatically increased the racial and ethnic diversity of the country, producing significant increases in all minority groups [18]. The US Census Bureau predicts that by the year 2050 the percent of population by race will represent 46.6 % Caucasian, 13 % African-American, and 7.4 % Asian, with 5.4 % of the population being identified as having “two or more races” [18]. The percent of Hispanic individuals is expected to be close to 27.9 % [18]. These predictions note marked increases in all minority groups.
More importantly, as it relates to psychological and neuropsychological intervention in childhood cancer survivors, patterns of American immigration, moderating the demographic variables of large numbers of individuals, are not the result of mechanisms driven by chance processes. The non-random nature of these mechanisms is the outcome of specific and selective influences affecting host and sending countries, be it humanitarian concerns, occupational needs, or geopolitical turmoil [19]. In addition, the proportion of immigrants from specific regions living in the U.S. or from foreign countries may vary substantially over large periods of time [7, 20]. This inter- and intra-variability in immigration patterns is particularly important for key demographic variables, as gravitation exists towards specific residential areas, occupations, and educational attainment [4, 7, 20]. Ultimately, these factors moderate the utility of data obtained during the course of test standardization, as well as neuropsychological assessment and treatment planning [16, 21]. In summary, the current and predicted changes in the racial and ethnic diversity of the U.S. population underscore the ever increasing importance of understanding the dynamics between culture and health care.
19.3 Culture and Health Care
Within the health care setting, it has been found that cultural, socioeconomic and ethnic factors influence a patient’s seeking and receiving treatment, as well as impact adherence and response to treatment. Minority patients in the United States unfortunately are more likely to have a poorer health status [22]. Latinos, Native Americans and Asian Americans have also been found to receive less treatment and/or prevention services in the U.S. [23]. The risks are worse for minority members with lower socioeconomic status, as well as those with limited English proficiency [23]. Limited English proficiency in parents has been found to correlate with poorer health status and greater odds of inadequate medical care in children [22]. This makes it necessary to have interpreters available in health care settings such as hospitals and clinics for clinical services, if using such linguistic resources is appropriate and necessary. However, the availability of interpretive services is often limited [24], and may even be unavailable for some minority patients.
19.4 Barriers in the Assessment and Treatment of Minorities
In addition to this, many barriers can affect the process of assessment and treatment with minority populations, including families of children and youths with cancer. Some of the barriers that have been found, particularly when working with minority patients diagnosed with cancer, are identified below.
19.4.1 Language
Language is frequently cited as a significant barrier encountered by health care providers treating pediatric patients with cancer [25]. Language differences may hinder the communication process between patients and health care providers. In terms of assessment, language proficiency may affect the results from individualized assessments and rating scales created primarily in English. Pfefferbaum et al. [26], for example, found that Hispanic parents of children diagnosed with cancer have been found to encounter more difficulties when completing scales designed to measure variables such as anxiety and language use.
19.4.2 Differing Expectations and Cultural Beliefs
Cultures may differ in the process of providing information about diagnosis, treatment plans and prognosis. For example, cultural differences have been found in physicians’ attitudes towards disclosing diagnostic information to child patients, as well as family members. Parsons et al. [27] found that, fueled by their sense of responsibility to inform, 65 % of physicians sampled from the U.S. reported always informing underage patients of their cancer diagnosis. In contrast to this, only 9.5 % of Japanese physicians reported doing so, stressing the importance of issues such as parental burden, stigma, work culture, and patient variables. Culture may also underlie beliefs about illness and disability, as well as its meaning. Whereas personal independence is highly valued in Western culture, it is not necessarily a goal in other cultures, which often have different beliefs about: (a) a person’s degree of responsibility and control over health, and (b) the role of family in dealing with illness [28, 29]. These factors may influence the amount of medical information available during intake, and must be taken into account when offering feedback and recommendations.
Similarly, cultural differences are apparent within the expectations of health care providers and patients throughout the assessment, diagnosis and treatment process. A national study found that racial and ethnic minorities held more negative views of physicians than European-American patients, even after controlling for socioeconomic status and education [30]. The authors of this study hypothesized that this may be due to the differing expectations between physicians and patients, or to physicians misunderstanding the views held by minority patients. With regard to general treatment adherence, the literature suggests that cultural minority patients are more likely to end treatment prematurely, due to frustration, misunderstanding, and role ambiguities in treatment [31].
19.4.3 The Presence and Treatment of Pain
Most children diagnosed with cancer experience some amount of pain during the course of their illness, be it due to the disease itself or to the effects of the procedures and powerful therapies (e.g., chemotherapy or/and radiation) used to treat it in some instances [32]. In adults, the presence of severe pain has been found to have a negative impact on performance in neuropsychological assessments [33]. Pain is also likely to have a negative impact on children’s performance and effort during the evaluative process. Anderson and her colleagues (2004) found that physicians underestimated baseline pain for more than 50 % of a sample of African-Americans and Latino outpatients with cancer [34]. This led physicians to under-prescribe analgesics for this population. Consequently, minority patients have been found to receive inadequate pain management in some settings [35].
19.4.4 Parental Stress
A diagnosis of pediatric cancer can produce significant levels of stress, as well as depressive symptoms, in both children and parents. Parental reactions, as well as stress management, during the process of diagnosis and treatment of cancer has been found to be related to anxiety and post-traumatic stress symptoms in the family after treatment ends [36, 37]. Symptom severity and management have been found to show some variations related to educational level, ethnicity, and gender [38]. Pfefferbaum et al. [26] for example, found that Latin-American parents expressed feeling more stress in relation to their children’s illness, when compared to parents from the United States. This finding is significant, as other studies have found that mothers who report higher levels of anxiety during their child’s treatment have been found to show more avoidant behaviors, such as missing post-treatment follow-up appointments [36].
19.4.5 Treatment Adherence
Early studies suggested that multicultural clients are more likely to prematurely end treatment, due to frustration, misunderstanding, and role ambiguities of treatment [31]. Sohlberg and Mateer [39] note that identity and self-concept are influenced by culturally-mediated norms about assertiveness, aggression, emotional expression, and individual goal attainment versus sacrificing for the greater good. Culture may also underlie beliefs about illness and disability, as well as its meaning. Whereas personal independence is highly valued in Western culture, it is not necessarily a goal in other cultures, which often have different beliefs about (a) a person’s degree of responsibility and control over health and (b) the role of family in dealing with illness [28, 29].
19.5 Multicultural Assessment and Diagnosis
The ever-increasing ethnic diversity of the U.S. population emphasizes the need to account for the role of culture in diagnosis, assessment, and interventions. Many studies examining performance on neuropsychological tests have found differences in performance between cultural minority groups, despite matching for relevant sociodemographic factors [40]. Various factors have been hypothesized to influence this, including structural brain differences, clinician and patient cultural and language proficiency, as well as the constructs measured by the tests themselves. Years of education, acculturation level and reading ability have also been found to have significant effects on performance in neuropsychological tests for ethnic minorities [41].
The patient’s level of acculturation and linguistic dominance is critical to assess prior to selecting a test battery and commencing an evaluation. Furthermore, measurement of a patient’s level of acculturation and linguistic dominance is vital to the validity of an evaluation, as it informs the clinician of the best manner in which to approach the assessment process, including which language and measures to use during the assessment. Depending on a client’s level of acculturation and language skills, the clinician should tailor the evaluation for the individual, or choose to refer a client to another clinician with expertise in that particular person’s culture and/or dominant language. For example, the interested reader is referred to Ostrosky-Solis and Oberg’s [42] review of the similarities and differences in performance on various tests across languages and cultures. For information specific to the Hispanic population, the reader may want to review the work of Llorente [4] and Marin and Marin [43]. During the clinical interview, the neuropsychologist must gather information that will inform him or her as to the best way to proceed, including test selection, and whether the client needs a referral to a more appropriate professional. To determine how to proceed, the evaluator must inquire about the demographic characteristics of the client. Equally important is the collection and review of collateral sources of information. This information can include the patient’s own verbal report, past personal and family history, and cross-informant reports [4]. Specifically, the evaluator would benefit from learning the client’s level of education in the U.S. and elsewhere, the length of time they have lived in the country, what language(s) are primarily spoken in the home, whether the client participated in English as a Second Language (ESL) classes in school, and specifically, how bilingual they are. Do they write in only one language, but speak both? If they speak multiple languages, which one do they prefer?
While subjective information obtained through the clinical interview is vital to an evaluation, the neuropsychologist should also conduct a formal assessment of acculturation and linguistic dominance and competence. Making judgments about acculturation and linguistic skills solely from simple conversational interactions during the clinical interview is egregious. Fortunately, objective measures of these variables have been developed to assist the neuropsychologist in making important decisions about minority clients. Formal acculturation scales can tap into the client’s preferred language across a variety of settings, including home, leisure, and more formal settings. Remarkably, such acculturation scales are effective in predicting generational cohort and degree of acculturation [44]. For example, the acculturation scale developed by Marin et al. can be reliably used with the Hispanic population and encompasses seven simple questions to which the client responds [44]. These acculturation scales take into consideration variables that include the timing of immigration, generational differences in migration, ethnic identification, and length of U.S. residency [44–46].
The Latino Consortium of The American Academy of Pediatrics’ Center for Child Health Research found that one of the most pressing issues concerning Latino Health is the scarce availability of adequately validated research instruments for this population [47]. This can also be said to be true for members of other minority groups. Similarly, neuropsychological assessment instruments that are adequately adapted and standardized for distinct minority groups are limited. As a result, many neuropsychologists are forced to use interpreters, or translated versions of tests and procedures which have limited cultural norms. As explained by Ardila et al., translations of English-based tests, without proper cultural adaptation, may be biased by the requirement of prior knowledge on particular concepts, cultural references and conventions, and even phoneme usage [48, 49]. Thus, simply translating tests can result in assessment inferences that are invalid and unreliable due to cultural ignorance [50]. Geisinger [51] suggests that the reliability and validity of a test must be re-established whenever a test is altered for use with a specific population. This is necessary in order to ensure instrument accuracy when assessing selected variables within that population [51, 52]. Recently, test standardizations have begun to include small samples of cultural minorities in the data collection process, providing some advancement in culturally sensitive neuropsychological testing. However, care should be taken when using certain norms, as they may not reflect the specific demographics of an individual from a given cultural group, which may lead to inaccuracies in the interpretation of the acquired data [53].
Even though an interpreter represents another attempt to adapt the evaluation for patients who speak another language, this method should be avoided at all costs [4, 54–56]. Cross-cultural bodies of research suggest that evaluations which utilize an interpreter may be invalid, unethical, and when used for forensic purposes if they should ever reach a legal setting, are easily challenged in a court of law [56]. As evidenced by the American Psychological Association’s (APA) Ethical Principles and Standards, the neuropsychologist is ethically responsible for maximizing the validity of the parameters of the evaluation [52, 57]. Thus, given the strong support from multiple, prevalent bodies of research, the use of an interpreter may represent an egregious ethical error in the course of a pediatric forensic neuropsychological evaluation.
The only situation in which the use of an interpreter during a neuropsychological evaluation would be acceptable is when the client speaks a very rare language, and the clinician’s attempts to locate and refer the client to a more appropriate clinician or neuropsychologist who speaks that language are fruitless. Still, test results and conclusions drawn in the evaluation would be of questionable validity, and the clinician is obligated to emphasize limited confidence in test results in the written report. In the rare occurrence wherein an interpreter must be used, the neuropsychologist is implored to follow certain guidelines in order to preserve the validity of the evaluation as much as possible [4]. Specifically, the interpretative services should be of high quality and should utilize trained professionals, preferably specialized in the psychological sciences. Individuals with mental health training are most preferred, as they are more likely to be familiar with the parameters of the assessment situation [4]. Clearly, a client’s family member or associate should never be utilized as an interpreter during the neuropsychological evaluation for obvious reasons [58]. Although the problems with the use of family members serving as interpreters should be self-evident, they deserve emphasis here. Family members do not have proper training in the ethical guidelines and proper procedures of interpretation, their own levels of acculturation and language proficiency can impact the quality of their interpretation, and their use can lead to bias, given their inevitable vested interest in the results and outcome of the evaluation [59].
Cultural awareness and understanding clearly need to be considered an integral part of a clinician’s knowledge base when called upon to assess, diagnose, and provide consultation and follow-up care with children and adolescents with cancer [60]. Groce and Zola [61] noted,“An individual’s culture is not a diagnostic category; no cultural heritage will wholly explain how any given individual will think and act, but it can help health care professionals anticipate and understand how and why families make certain decisions.”Rivera Mindt et al. [62] describe the importance of developing linguistic and sociocultural competency in neuropsychologists and psychometricians. They also recommend the integration of multiple factors into case conceptualization, including, but not limited to: country of origin, level of acculturation, education, socioeconomic status, social support, and nutritional history. The presence of barriers inherently associated to a diagnosis of cancer, such as pain and parental stress, should also be considered during the process of assessment, diagnosis and intervention with pediatric patients from cultural minorities. Although taking these factors into consideration is critical, the most essential component in this process is an ethical and culturally sensitive stance towards the assessment and rehabilitation of these populations.
Multi-culturally sensitive neuropsychological intervention poses unique challenges to practitioners, given the limitations in our assessment tools that guide this intervention, the need for developing a greater understanding of the impact of culture on one’s practice, and interpreting the results of our findings within a culturally sensitive context [63]. Groce and Zola [61] propose that this cultural sensitivity begins with self-reflection:
Everyone has a cultural heritage that influences his or her health beliefs and practices. It is thus not practical to learn in detail the infinite details of specific cultures, but rather to assume that such variations occur and learn how they might affect one’s health practices. Rather than teaching every health practitioner to be a mini-medical anthropologist, it is more important for practitioners to be sensitive to the patient’s heritage, to their own heritage, and to what happens when different heritages and belief systems come together (p. 1054).Related posts:
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Neuropsychological Effects of Pediatric Brain Tumors and Associated Treatment
Educating and Preparing the Childhood Cancer Survivor for Long-Term Care: A Curriculum Model for Cancer Centers
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