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NeuroRehabilitation 34 (2014) 645–653 DOI:10.3233/NRE-141079 IOS Press
Issues of cultural diversity in acquired brain injury (ABI) rehabilitation Anthony Lequericaa,b,∗ and Denise Krcha,b a Traumatic
Brain Injury Laboratory, Kessler Foundation, NJ, USA of Physical Medicine and Rehabilitation, New Jersey Medical School, Rutgers State University of New Jersey, NJ, USA b Department
Abstract. INTRODUCTION: With the general population in the United States becoming increasingly diverse, it is important for rehabilitation professionals to develop the capacity to provide culturally sensitive treatment. This is especially relevant when working with minority populations who have a higher risk for brain injury and poorer rehabilitation outcomes. OBJECTIVES: This article presents a number of clinical vignettes to illustrate how cultural factors can influence behavior in patients recovering from brain injury, as well as rehabilitation staff. The main objectives are to raise awareness among clinicians and stimulate research ideas by highlighting some real world examples of situations where a specialized, patient-centered approach needs to consider factors of cultural diversity. CONCLUSION: Because one’s own world view impacts the way we see the world and interpret behavior, it is important to understand one’s own ethnocentrism when dealing with a diverse population of patients with brain injury where behavioral sequelae are often expected. Being able to see behavior after brain injury with an open mind and taking into account cultural and contextual factors is an important step in developing culturally competent rehabilitation practices. Keywords: Culture, diversity, rehabilitation, brain injury
1. Introduction Culture is a learned system of values, beliefs, and attitudes that is shared by a group of people. Culture, when defined broadly, can include groups such as race, ethnicity, gender, religion, socioeconomic status, disability status, sexual orientation, and age. The United States is becoming increasingly diverse. Minority population growth has been steadily increasing in recent years such that clinicians are more frequently interacting with individuals from diverse backgrounds. Further, there is evidence to suggest that minorities are at greater risk for sustaining a brain ∗ Address for correspondence: Anthony Lequerica, Ph.D., Kessler Foundation, 1199 Pleasant Valley Way, West Orange, NJ 07052, USA. Tel.: +973 324 3551; Fax: +973 243 6984; E-mail: alequerica@ kesslerfoundation.org.
injury (Cooper, Tabaddor, & Hauser, 1983; Frankowski, Annegers, & Whitman, 1985; Whitman, CoonleyHoganson, & Desai, 1984), bringing an even greater number of minorities into rehabilitation facilities. Minorities with brain injury often face socioeconomic (SES) and insurance status barriers that impact whether they receive inpatient rehabilitation. For those minorities who are fortunate enough to receive such services, studies show that health disparities remain in long term outcomes, even after accounting for SES and insurance factors (Arango-Lasprilla & Kreutzer, 2010; Institute of Medicine, 2001; Rosenthal et al., 1996; Stewart & Napoles-Springer, 2000). The issues driving this effect are multi-faceted including mistrust of health care professionals, racism, environmental barriers impacting accessibility, quantity and quality of education, lack of bilingual professionals, as well as the lack of culturallyrelevant assessment tools.
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2. Current trends There is a growing body of research investigating the aspects of culture that impact rehabilitation outcomes. A literature search using the Ovid MEDLINE, Ovid Healthstar, and PsycINFO databases showed an increasing trend in publications in peer-reviewed journals over the past 30 years dealing with diversity in the areas of disability and rehabilitation (see Fig. 1).
Fig. 1.
This evolving body of research can be utilized to inform the way we interact with patients in terms of how we interpret their behaviors and respond to them. Clinical experiences can also provide a basis for future research by identifying problematic issues not adequately addressed in the literature. The goal of this paper is to illustrate some of the issues of cultural diversity that may be encountered when working with diverse individuals recovering from brain injury in an acute rehabilitation setting to supplement the literature with real-world clinical examples. Culture influences a patient’s presentation of symptoms, perception of illness and disability, expectation for recovery, use of rehabilitation services, and consequently potential for improvement. Culture equally influences a clinician’s response patterns to the patient, which can have a profound impact on many aspects of a patient’s experience of rehabilitation. Utilizing a more culturally appropriate clinical approach that is tailored to the needs of the individual is necessary for full patient engagement in the rehabilitation process in order to maximize treatment outcomes after brain injury and minimize health disparities.
3. The concept of rehabilitation The process of rehabilitation, especially in an inpatient rehabilitation setting, may appear to follow a
traditional medical model in which the doctor is seen as someone who typically orders tests, prescribes medications, and administers treatments to the patient, who plays a more passive role. The presence of doctors and nurses often contributes to the patient’s perception that they are going to be given a treatment that will cure their ailment. It is important to educate patients who come to rehabilitation and their families that there are fundamental differences between an acute care hospital and a rehabilitation facility. In the rehabilitation setting, the doctor plays a more collaborative role, and the patient is expected to bear greater responsibility for achieving treatment goals. For individuals from a Western cultural orientation, wherein mastery and individualism are prized, the patient may be more inclined to assume responsibility for realizing treatment goals. However, for individuals from diverse cultures, this conceptual leap may pose a barrier. In some cultures, doctors are often only recognized as authority figures whose goal is to heal, such that the idea of a patient forming a partnership with the treating clinician or therapists may be a foreign concept. Patient education must explicitly address these issues so that the patient and their family gain a full understanding of rehabilitation in terms of patient rights and responsibilities as well as expectations of outcome. Research has shown that certain minority populations may have developed a mistrust of healthcare providers (Alston, 2003; Benkert, Hollie, Nordstrom, Wickson, & Bins-Emerick, 2009; Boulware, Cooper, Ratner, LaVeist, & Powe, 2003). Gaining a sense of trust is important to developing a therapeutic alliance. Being aware of the world view of the population being treated will allow the rehabilitation professional to determine the most effective way to collaborate with patients and their families to set mutual outcome goals, thereby establishing healthy relationships between the patient and the rehabilitation staff. Such rapport development is critical in ensuring that rehabilitation staff better meet patient needs and achieve a successful outcome.
4. Culture and family Because involving families in treatment is a part of many rehabilitation programs, it is important to understand how cultural influences can interact with family dynamics to impact behavior. Although it may not be readily appreciated, the majority American culture possesses an individualistic world view in comparison with that of other cultures. For example, many other cul-
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tures place greater importance on the family unit than the individual. Despite being encouraged to allow the patient to attempt to carry out tasks independently, there can be a strong cultural tendency for family members to tend to the patient at every instance where struggling may be detected. Consider the following example.
promote successful, culturally sensitive treatment and improve outcomes. Another example of the complexity of brain injury within a cultural context is presented in the example below.
4.1. Example A
A monolingual Spanish-speaking patient in rehabilitation was informed by her husband that their 7-year-old child had been killed in a car accident. The husband, a Hispanic male, yelled out loud in Spanish as if speaking to God, “Why her? Please God, take me instead.” The patient, recovering from a brain injury, displayed the same behavior as her husband and appeared to be writhing in physical pain. To the staff, the patient’s behavior was considered to be restlessness or agitation commonly seen after brain injury, and the husband’s behavior was seen as excessive, overly dramatic, and contributing to the agitation of the patient. The Spanishspeaking neuropsychologist, who was called to assist with the situation, observed that security was in the process of removing the husband from the building due to his disruptive behavior, and the staff was considering sedating the patient to calm her. The neuropsychologist assessed the situation and redirected security to allow a separate room for the patient and her husband to grieve together, where other patients would not be disturbed. The nurse and aide remained with the patient to monitor her status and ensure her safety. The attending physician was in agreement that a pharmaceutical intervention for agitation could be postponed as long as the behavior deescalated. In many Hispanic cultures, physical gestures such as beating one’s chest or collapsing from grief are not unusual after the death of a loved one. In some cases, the outward display of grief and exclamations to God or the spirit of the deceased are not only common, but an expected show of love, whereas a more subdued display can be interpreted as indifference to the loss. Being allowed to grieve in a culturally appropriate way with the spouse had a calming effect for both the patient and her husband and the only active intervention needed was monitoring for safety. If security had removed the husband from the building, it is likely that the patient would have had a much more difficult time self-regulating her emotions in the absence of her spouse who was accompanying her in her grief and providing comfort through a shared experience. As can be seen in the above example, “business as usual” can be inappropriate when dealing with diverse populations. The staff immediately attributed the patient’s outward expression of grief to agitation
A 60-year-old, Asian male with a brain injury was learning how to use adaptive utensils for feeding. The occupational therapist educated the patient’s wife about how to cue him if necessary so that he could feed himself. The patient’s wife tried to be present for every meal and was noted several times to be spoon feeding the patient despite repeatedly being told not to do so by staff. Initially it was assumed that the wife did not understand the importance of fostering independence in the patient. Before long, she was labeled as noncompliant while the husband who passively allowed her to feed him was labeled as being lazy. The treating neuropsychologist was consulted. Having encountered similar situations in the past, he suggested that their behavior may be better viewed as a fulfillment of cultural roles in the face of illness or injury rather than non-compliance. He suggested that it may be unreasonable to expect her to refrain from helping. To increase her adherence with rehabilitation goals the psychologist worked with occupational therapy to develop other ways that the wife could provide assistance so that she could actively fulfill a care-giving role to her husband, while enabling the patient to develop independent feeding skills. The intervention was ultimately successful because the rehabilitation staff identified the cultural needs and incorporated them into treatment. The above example illustrates the importance of considering alternative explanations for a patient’s behavior before making a judgment that could influence treatment. Based on what the staff knows about brain injury, it is easy to assume that the patient’s behavior suggests lack of carry-over of what was learned in occupational therapy. The patient’s passivity may be construed as apathy, a common sequela of brain injury (Kant, Duffy, & Pivovarnik, 1998). One’s understanding of brain injury alone may not be sufficient due to the influence of culture on behavior. This example can be viewed from the standpoint of rehabilitation goals. In the United States the goal of independence is stressed as opposed to the interdependence often stressed in other cultures (Stanhope, 2002). Finding a way to bridge this gap in the processes and goals of rehabilitation is important to
4.2. Example B
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and restlessness, common sequelae of brain injury. While it is quite possible that the patient’s behavior may have been somewhat exaggerated by disinhibition, the behavior itself can be more accurately viewed as a disinhibited, culturally appropriate response. Being sensitive to cultural issues is necessary for understanding patient behavior and effective treatment delivery. In complex cases, a number of factors can come into play and influence the perceptions of patients and their families. Being culturally sensitive can be challenging when there is a complex interlay of diversity factors. This is shown in the following case illustration. 4.3. Example C Upon admission to the rehabilitation facility, a 35year-old Hispanic male presented with right-sided hemiparesis, decreased initiation, and word-finding difficulties. Though premorbidly, he was fluent in English and Spanish, his hemorrhagic stroke had left him with severe expressive impairments in both English and Spanish. His preferred language of communication was Spanish, and post-stroke language ability consisted of providing one-word responses to questions, with gradual increases in his ability to string together several words to form an idea. This case was complicated by the fact that the patient was gay and in a long-term relationship with American man, yet all of his family (except a cousin) had no knowledge of his sexual orientation, or of his relationship. His partner was with the patient at the time at which he incurred the stroke and was by his side throughout acute care and now in inpatient rehabilitation. The patient was very close to his family, yet did not initially want his family to be contacted in order to conceal his relationship and sexual status. Ultimately the partner convinced the patient to contact his family. His cousins, who were the first to arrive, were initially taken aback to learn of the patient’s being gay, yet quickly accepted this fact. The family members and the partner had differing opinions about whether “coming out” to other family members was in the best interest of the patient. The partner understood that the patient wished to share his sexual orientation with the rest of his family, whereas the cousins felt it was better to protect the patient from the scrutiny of other relatives. Escalating tension between these parties led to the cousins feeling that only “la sangre” (i.e., blood relatives) should be present. The impending arrival of the patient’s mother added pressure to the existing tension between the partner and the patient’s family. Ultimately,
a neuropsychological consult was ordered to determine capacity. The neuropsychological evaluation revealed that the patient was indeed able to make his own decisions, but that his responses to “Yes/No” questions were unreliable. It was deemed that in order to ascertain the patient’s true wishes, he was required to express himself using sentences. After having set these ground rules, the neuropsychologist helped mediate a discussion between the Spanish-speaking cousins and the English-speaking partner. From this group effort, it was able to be ascertained that the patient did not want his mother to know of his sexual orientation. Further, the patient wanted his partner to visit freely, but withhold intimate displays of affection while the mother was present. This compromise was acceptable to all parties, resulted in decreased anxiety surrounding the situation, and allowed the patient to shift focus to rehabilitation. The neuropsychologists’ awareness of both Hispanic cultural values and Hispanic cultural viewpoints regarding sexual orientation was critical to achieving a successful resolution to the family conflict. The above example contained an interaction of two diversity factors (i.e., ethnicity and sexual orientation) that influenced the behavior of the patient, family, and partner. The family saw the partner as a stranger because his existence was kept secret. There were also attributions made about him by the patient’s family based on his age, sexual orientation, and European-American heritage. They saw him as taking advantage of the situation as an opportunity to push the patient “out of the closet” before he may have been ready. The patient’s brother was extremely anxious about other family learning about the patient’s orientation and did not want his brother to be seen as less of a man, a common perception of gay men within the Hispanic culture. The patient seemed apathetic and was quick to respond in agreement without fully processing the situation. Although the patient ultimately had the capacity to make decisions about his social life, he required some assistance to arrive at an informed decision. An explicit description of the situation in his primary language helped him to see the implications of potential decisions more clearly and cueing him to speak in full sentences to express his wishes provided greater confidence of his capacity and ensured that he was not passively agreeing with questions posed to him about how he wanted the situation to be handled. Perhaps the most important aspect of this intervention was that it reduced the anxiety of all involved and quelled the family “drama” before it became a distraction to the patient. It enabled him to focus on his rehabilitation therapies and maintain the
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support of his partner and family of origin through compromise. A month later, the partner and the patient’s brother both accompanied him to outpatient therapy. They thanked the neuropsychologist for his intervention as it enabled the family and the partner to cooperate in caring for the patient after discharge. Diversity of culture often comes along with diversity of language which can pose challenges for communication between the professional and the patient.
5. Language More than 55 million Americans speak a language other than English in their homes (U.S. Census Bureau, 2008). Non-English-speaking immigrants to the United States often reside in neighborhoods with higher densities of individuals of their culture and/or country of origin. For this reason, it is not uncommon for an immigrant to live in the US for years without learning English. The effects of limited English proficiency (LEP) on daily life can be far reaching, impacting everything from health care utilization to quality of care (Timmins, 2002). A communication barrier due to LEP can make patients from diverse linguistic backgrounds feel more vulnerable and be less likely to self-advocate, ask relevant health questions, and express their basic needs (Ledger, 2002). This barrier can be especially problematic in brain injury rehabilitation due to the level of patient involvement required. Non-English speakers have been shown to have poorer functional outcomes after brain injury (Marquez de la Plata et al., 2007). The nature of treatment delivery in rehabilitation therapies requires effective communication. Patients with LEP are at risk for not fully benefiting from services. They are also at risk for further injury if safety precautions are not effectively communicated. All too often, clinicians use family members to translate. Because it is common for the younger generations to speak English due to their involvement in an Englishspeaking school system, the translating responsibilities are often left to children. Although, utilizing the child as an interpreter may be convenient, it places him/her in an awkward position. Asking a child to translate exposes them to situations, knowledge, and private and intimate data that may be inappropriate for them to be acquainted with at their age (Karliner, Jacobs, Hm Chen, & Mutha, 2007). Family members may choose not to translate certain messages that may be seen as having the potential to make the patient upset. Rather, use of a trained inter-
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preter is a preferred approach, and in fact is advocated by the National Standards for Culturally and Linguistically Appropriate Services (CLAS) in Health Care by the U.S. Department of Health and Human Services Office of Minority Health (Office of Minority Health, 2001). Further, use of a trained interpreter can promote feelings of being respected, resulting in improved patient satisfaction with services. Briefing the interpreter prior to the interaction with the patient informs them of the objectives of the visit and can minimize bias or undue influence on the part of the interpreter. Assessment of cognitive deficits after injury can be challenging when working with individuals of diverse cultural and linguistic backgrounds. There are drawbacks to using an interpreter to translate standardized tests for a myriad of reasons. In addition to the basic message or intent of test items becoming lost in translation, there are bigger problems associated with cultural bias that a simple translation cannot address. In fact, research has shown a strong effect of culture on nonverbal tests that are not primarily language based (Rosselli & Ardila, 2003). Normative data should be inclusive of the population being tested to the point where it is representative. Otherwise, standardized scores would be meaningless. Although the use of racebased norms has been investigated, it is argued that they are problematic mainly in the way the concept of race conflates a number of underlying variables such as education (quality and quantity) and socioeconomic status that often drive these disparities in test performance (Gasquoine, 2009). “Acculuration” is generally understood as the degree to which an individual immigrating from another culture assimilates to the language, customs, and world view of the majority society. Acculturation has been shown to be associated with performance on neuropsychological tests and should be measured when assessing individuals with brain injury from diverse cultural backgrounds (Kennepohl, Shore, Nabors, & Hanks, 2004).
6. Community reintegration Research has shown that “community reintegration,” a common goal of rehabilitation, may not have the same meaning for everyone. While return to work or school is a typical focus for rehabilitation therapies, there are other aspects of community participation that may be more important for diverse populations. Community participation is a social construct, and is therefore sensitive to socio-cultural norms that may
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sometimes better account for response choices apart from one’s level of impairment. For example, Sander and colleagues (2010) found that Blacks and Hispanics prioritized domestic activities, such as parenting, housekeeping, and cooking, as more important compared to how they were rated by Whites (Sander, Clark, & Pappadis, 2010). For patients with diverse religious backgrounds, the goal of interest may be returning to church. Community reintegration is strongly impacted by the cultural environment to which the patient wishes to return. It is common for individuals to immigrate to the U.S. in order to find work to support their families living domestically and/or abroad. Individuals with LEP may be restricted to accepting manual labor jobs that place them at greater risk for injury. This is compounded by the fact that many of the jobs may be “off the books” where employers are exploiting undocumented immigrants by undercompensating them and failing to meet health and safety standards in the workplace. For example, if warning signs and labels on chemicals appear only in English, then safety practices in the workplace may not be effective for individuals with LEP. In addition to these conditions posing a greater risk for injury, the nature of the manual labor may preclude any possibility of returning to the same line of work after brain injury if the physical demands and work conditions are not appropriate, depending on the patient’s residual deficits. Because return to employment has been identified as an area of disparity after brain injury, these factors must be taken into account by clinicians in setting rehabilitation goals (Arango-Lasprilla, Ketchum, & K., 2008). Discharge planning that includes vocational rehabilitation could serve to explore the patient’s strengths and weaknesses and assess interest in possible lines of work appropriate for the patient. While it is desirable to evaluate strengths and weaknesses in the patient’s primary language, a formal measure of English proficiency can be useful in placing the patient in the appropriate work environment.
7. Religion Because individuals often present to rehabilitation after a traumatic event, it is common for patients adopt an existential frame of mind. Being aware of the patient’s religious background can help the clinician to better interact with the patient as they recover from injury. Individuals from certain devout religions may feel that their injury is a punishment from God for sins
they have committed. Such individuals stricken by guilt can feel defeated and may be reluctant to participate in therapy. At the other end of the religious spectrum, a person of faith may hold onto hope with the belief that God will heal them through prayer such that participation in therapy would be viewed as a lack of faith in God’s power to heal them. Misconceptions about brain injury tend to be common among ethnic minorities who identify as active practitioners of their religion (Pappadis, Sander, Struchen, Leung, & Smith, 2011). It is often difficult to foster motivation within these patients while still respecting their religious beliefs. If available, pastoral counseling can help such patients cope with adjustment issues within the framework of their fundamental beliefs about life.
8. Diversity in the patient-provider dyad Just as staff must understand their own preconceived notions about other cultures, it is important also to recognize that even patients come with their own prejudices. Perceived racism and sexism are portrayed in the following example: 8.1. Example D A patient, born and raised in Africa, was admitted to a rehabilitation hospital after sustaining a brain injury. He was confused, agitated, and combative for several days. As he cleared from his confusion, staff noted him to have a lingering irritability. The patient told several staff members that the Caucasian case manager assigned to him was racist. When word got back to the case manager, she was brought to tears by the accusation and from that point on refused to speak to the patient without a third party present. According to the patient, the case manager spoke to him about his personal business (discharge planning) in an area where many people could hear the conversation. The patient demonstrated some of her mannerisms and body language (crossing her arms and legs) and found it to be conveying a lack of respect. The patient repeatedly touched on themes associated with the case manager being a woman and speaking to him “in such a way.” In the patient’s culture, women were expected to be passive. The case manager’s questioning and body language was perceived as offensive, and the fact that she was doing it in a somewhat public area was humiliating and emasculating to the patient. His response was to label her as racist. In speaking with the patient, it became clear that he had
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been the victim of racism in the past because of his outward appearance and thick accent. In this case, however, the attribution of racism as the motivator of her behavior was less clear. Although it may seem that he was misinterpreting her body language due to a complex interaction of decreased social awareness after injury and a violation of his cultural norms with regard to gender roles, it is quite possible that the case manager’s opinion of the patient as a sexist (based on the way he treated female staff) was unconsciously being expressed as disdain in her behavior toward him. Interpersonal interactions between patient and staff can be complicated by issues of diversity. It is not unheard of for a patient to make racist comments about a rehabilitation professional who may be culturally diverse. Although most people hold a variety of preconceived notions about people from other cultures, a brain injury that results in disinhibition can allow racist thoughts to leak out in words or offensive behavior. Even if it were possible to match every patient with staff that is culturally similar, there is much debate on the proper course of action in these cases (Kamochi et al., 1999). This has been discussed as an ethical issue associated with proper treatment of the patient vs. the rights of the health care provider to a non-hostile work environment. Attributions of the health care worker can influence how they are affected by racism on the part of their patients. A recent study showed that nurses who attributed racist behavior to the mental illness of the patient experienced less distress in working with the patients in an institution (Deacon, 2011). Unfortunately, there is very little research on the potential consequences of a given course of action in these instances, making it very difficult for the rehabilitation professional to provide an evidence-based response.
9. Cultural competence In the seminal monograph by Cross, Bazron, Dennis, and Isaacs (1989), cultural competence is defined as “a set of congruent behaviors, attitudes, and policies that come together in a system, agency, or amongst professionals and enables that system, agency, or those professionals to work effectively in cross-cultural situations” (Cross, Bazron, Dennis, & Issacs, 1989). The development of cultural competence has been conceptualized as a process. One of the most important steps in moving toward the goal of competence is to recognize one’s own world view (Niemeier & Carlos ArangoLasprilla, 2007; Niemeier, Burnett, & Whitaker, 2003).
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Ethnocentrism often creates a lens through which we view the world and interpret situations according to our own cultural values. A culturally competent clinician is aware of his/her own ethnocentrism, withholds assumptions, and remains open to the possibility that there may be cultural factors guiding a patient’s perception and behavior. Education though experience is key to gaining a better understanding. With more experience working with other cultures, it may become clear that all individuals from the same culture may not hold the same views or behave the same way. There is often great variation within a given culture (Costigan, Bardina, Cauce, Kim, & Latendresse, 2006). For example, those who are categorized as “Asian” may be seen by Westerners as being the same. Even though non-Asians may perceive Asians to have the same facial features and sound to their languages, “Asian” represents a heterogeneous group of individuals. While there are definite patterns of behavior in common within Asian cultures, there are also substantial differences in terms of country of origin, traditional foods, and language or dialect. “Asian” is often a blanket terminology that includes cultures such as Chinese, Japanese, Korean, Vietnamese, and many others. Even looking only within China we can find a variety of dialects and differences in geographic origin, level of education, socioeconomic status, and level of acculturation can impact the vocabulary, pronunciation, or even proficiency of reading, writing, and speaking that language. Keeping an open mind with these possibilities can allow one to develop a more refined cognitive schema when working with culturally different individuals while being careful not to stereotype. Treating a patient with a level of sensitivity to cross cultural, intraethnic, and individual issues can have a profound impact on the patient’s rehabilitation experience. With therapeutic engagement playing an integral part in rehabilitation progress (Lequerica & Kortte, 2010; Lequerica et al., 2007), providing culturally sensitive treatment can enhance rapport and has the potential to impact outcomes after acquired brain injury by enhancing the patient’s involvement as an active agent, cooperating with the rehabilitation team to achieve goals. Providing patients with a pleasant experience can also help to increase future healthcare utilization. This effect on future healthcare utilization is highly important due to the chronic nature of sequelae after ABI. Although there is increasing interest in cultural diversity in the health care literature, more research is needed to better understand the complex interaction of cultural factors in the rehabil-
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itation setting that impact patient behavior after ABI and to develop ways to improve treatment accordingly to reduce health disparities and improve long term outcomes for the diverse individuals impacted by ABI.
10. Summary These vignettes that touched on ethnicity, sexual orientation, language, and religion were loosely based on actual events, but altered to protect confidentiality and fully illustrate the concepts of diversity being discussed. It is important to keep in mind that the diversity encountered in many rehabilitation settings may extend to include a myriad of other subcultures too vast and complex to present here in any great detail (generational, social class or socioeconomic status, urban vs. rural, etc.). Nevertheless, there are certain themes that serve as a point of focus in developing skills necessary to effectively provide treatment to individuals with brain injury from diverse backgrounds.
11. Limitations and future directions The examples provided were situations where a successful intervention was provided as a model. Unsuccessful interactions are not discussed here but can have an equally profound impact if the clinician takes the time to better understand the dynamics of their interaction. For example, a male clinician who extends his hand to greet the wife of a patient from another culture and is greeted by the shaking of her head to indicate “no” needs to take an additional step to arrive at an understanding of that response (This case refers to cultures where females are not allowed to touch or be touched by men other than their husband). Taking the effort to research this response can enable the clinician to modify their behavior on future encounters by not being the first to extend a hand to shake hands until the other party does so first. Interactions that are culturally congruent often convey a sense of respect that contributes to the therapeutic alliance. The current article was guided by the premise that the bridge between research and practice is bidirectional. While research translation into evidence based treatments is an ultimate goal, this article highlights the pathway from clinical practice to research in the sense that careful observation of events in the clinical realm identified issues that guided a literature search and highlighted research that has been conducted on these topics.
One limitation of this article is that the vignettes reflect specific experiences told in the style of two authors who just as everyone else, have their own world views and potential biases in their perception of events. Wherever possible, research literature associated with the real-world examples was discussed. However, this was not meant to be a systematic literature review on cultural factors in brain injury rehabilitation as that has been conducted elsewhere (Gary, Arango-Lasprilla, & Stevens, 2009). Rather, the goal was to highlight real world clinical situations working with a diverse population of patients recovering from brain injury to raise awareness and sensitivity of these issues among both researchers and clinicians so that future investigations can focus on development of culturally sensitive clinical practices in the hopes of reducing outcome disparities in rehabilitation. Future research is needed to better understand the complexity of cultural factors and how they interact with patient, provider, and environment to impact outcomes. In the realm of clinical practice, there is great potential for the development of culturally and linguistically adapted education programs for inpatients and their families, as well as outreach programs to increase follow-up rates among diverse populations. Communication among researchers, clinicians, and consumers is vitally important to develop patient-centered interventions for all individuals recovering from brain injury.
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A. Lequerica and D. Krch / Issues of cultural diversity in ABI rehabilitation behavior among Asian Americans and European Americans. Cultur Divers Ethnic Minor Psychol, 12(4), 710-724. Cross, T., Bazron, B., Dennis, K., & Issacs, M. (1989). Towards a culturally competent system of care (Vol. 1). Washington, DC: Georgetown University Child Development Center. Deacon, M. (2011). How should nurses deal with patients’ personal racism? Learning from practice. J Psychiatr Ment Health Nurs, 18(6), 493-500. doi: 10.1111/j.1365-2850.2011.01696.x Frankowski, R. F., Annegers, J. F., & Whitman, S. (1985). The descriptive epidemiology of head trauma in the United States. In: Central Nervous System Trauma Status Report. Washington, DC: National Institutes of Health, National Institute of Neurological and Communicative Disorders and Stroke, US GPO. Gary, K. W., Arango-Lasprilla, J. C., & Stevens, L. F. (2009). Do racial/ethnic differences exist in post-injury outcomes after TBI? A comprehensive review of the literature. Brain Inj, 23(10), 775789. doi: 10.1080/02699050903200563 Gasquoine, P. G. (2009). Race-norming of neuropsychological tests. Neuropsychol Rev, 19(2), 250-262. doi: 10.1007/s11065-0099090-5 Institute of Medicine (2001). Crossing the Quality Chasm: A New Health System. Washington, DC: National Academy Press. Kamochi, M., Kamochi, F., Kim, Y. B., Sawh, S., Sanders, J. M., Sarembock, I., et al. (1999). P-selectin and ICAM-1 mediate endotoxin-induced neutrophil recruitment and injury to the lung and liver. Am J Physiol, 277(2 Pt 1), L310-L319. Kant, R., Duffy, J. D., & Pivovarnik, A. (1998). Prevalence of apathy following head injury. Brain Inj, 12(1), 87-92. Karliner, L. S., Jacobs, E. A., Hm Chen, A., & Mutha, S. (2007). Do professional interpreters improve clinical care for patients with limited english proficiency? A systematic review of the literature. Health Serv Res, 42(2), 727-754. Kennepohl, S., Shore, D., Nabors, N., & Hanks, R. (2004). African American acculturation and neuropsychological test performance following traumatic brain injury. J Int Neuropsychol Soc, 10(4), 566-577. doi: 10.1017/S1355617704104128 Ledger, S. D. (2002). Reflections on communicating with nonEnglish-speaking patients. Br J Nurs, 11(11), 773-780. Lequerica, A. H., & Kortte, K. (2010). Therapeutic engagement: A proposed model of engagement in medical rehabilitation. Am J Phys Med Rehabil, 89(5), 415-422. doi: 10.1097/ PHM.0b013e3181d8ceb2 Lequerica, A. H., Rapport, L. J., Loeher, K., Axelrod, B. N., Vangel, S. J., & Jr, H., R.A. (2007). Agitation in acquired brain injury: Impact on acute rehabilitation therapies. J Head Trauma Rehabil, 22(3), 177-183. Marquez de la Plata, C., Hewlitt, M., de Oliveira, A., Hudak, A., Harper, C., Shafi, S., & Diaz-Arrastia, R. (2007). Ethnic
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differences in rehabilitation placement and outcome after TBI. Journal of Head Trauma Rehabilitation, 22, 113-121. Niemeier, J., & Carlos Arango-Lasprilla, J. (2007). Toward improved rehabilitation services for ethnically diverse survivors of traumatic brain injury. J Head Trauma Rehabil, 22(2), 75-84. doi: 10.1097/01.HTR.0000265095.06565.7b Niemeier, J. P., Burnett, D. M., & Whitaker, D. A. (2003). Cultural competence in the multidisciplinary rehabilitation setting: Are we falling short of meeting needs? Arch Phys Med Rehabil, 84(8), 1240-1245. Office of Minority Health (2001). National standards for culturally and linguistically appropriate services in health care. Washington, DC: US Department of Health and Human Services. Pappadis, M. R., Sander, A. M., Struchen, M. A., Leung, P., & Smith, D. W. (2011). Common misconceptions about traumatic brain injury among ethnic minorities with TBI. J Head Trauma Rehabil, 26(4), 301-311. Rosenthal, M., Dijkers, M., Harrison-Felix, C., Nabors, N., Witol, A. D., Young, M. E., & Englander, J. S. (1996). Impact of minority status on functional outcome and community integration following traumatic brain injury. Jnl Head Trauma Rehabil, 11(5), 40-57. Rosselli, M., & Ardila, A. (2003). The impact of culture and education on non-verbal neuropsychological measurements: A critical review. Brain Cogn, 52(3), 326-333. Sander, A. M., Clark, A., & Pappadis, M. R. (2010). What is community integration anyway? Defining meaning following traumatic brain injury. J Head Trauma Rehabil, 25, 121-127. Stanhope, V. (2002). Culture, control, and family involvement: A comparison of psychosocial rehabilitation in India and the United States. Psychiatr Rehabil J, 25(3), 273-280. Stewart, A. L., & Napoles-Springer, A. M. (2000). Health-related quality-of-life assessments in diverse population groups in the United States. Med Care, 38, 102-124. Timmins, C. L. (2002). The impact of language barriers on the health care of Latinos in the United States: A review of the literature and guidelines for practice. J Midwifery Womens Health, 47(2), 80-96. U.S. Census Bureau (2008). Language Spoken at Home. 2013, from http://factfinder2.census.gov/faces/tableservices/jsf/pages/ productview.xhtml?pid=ACS 10 1YR S1601&prodType=table Whitman, S., Coonley-Hoganson, R., & Desai, B. T. (1984). Comparative head trauma experiences in two socioeconomically different Chicago-area communities: A population study. Am J Epidemiol, 119(4), 570-580.
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NeuroRehabilitation 34 (2014) 645–653 DOI:10.3233/NRE-141079 IOS Press
Issues of cultural diversity in acquired brain injury (ABI) rehabilitation Anthony Lequericaa,b,∗ and Denise Krcha,b a Traumatic
Brain Injury Laboratory, Kessler Foundation, NJ, USA of Physical Medicine and Rehabilitation, New Jersey Medical School, Rutgers State University of New Jersey, NJ, USA b Department
Abstract. INTRODUCTION: With the general population in the United States becoming increasingly diverse, it is important for rehabilitation professionals to develop the capacity to provide culturally sensitive treatment. This is especially relevant when working with minority populations who have a higher risk for brain injury and poorer rehabilitation outcomes. OBJECTIVES: This article presents a number of clinical vignettes to illustrate how cultural factors can influence behavior in patients recovering from brain injury, as well as rehabilitation staff. The main objectives are to raise awareness among clinicians and stimulate research ideas by highlighting some real world examples of situations where a specialized, patient-centered approach needs to consider factors of cultural diversity. CONCLUSION: Because one’s own world view impacts the way we see the world and interpret behavior, it is important to understand one’s own ethnocentrism when dealing with a diverse population of patients with brain injury where behavioral sequelae are often expected. Being able to see behavior after brain injury with an open mind and taking into account cultural and contextual factors is an important step in developing culturally competent rehabilitation practices. Keywords: Culture, diversity, rehabilitation, brain injury
1. Introduction Culture is a learned system of values, beliefs, and attitudes that is shared by a group of people. Culture, when defined broadly, can include groups such as race, ethnicity, gender, religion, socioeconomic status, disability status, sexual orientation, and age. The United States is becoming increasingly diverse. Minority population growth has been steadily increasing in recent years such that clinicians are more frequently interacting with individuals from diverse backgrounds. Further, there is evidence to suggest that minorities are at greater risk for sustaining a brain ∗ Address for correspondence: Anthony Lequerica, Ph.D., Kessler Foundation, 1199 Pleasant Valley Way, West Orange, NJ 07052, USA. Tel.: +973 324 3551; Fax: +973 243 6984; E-mail: alequerica@ kesslerfoundation.org.
injury (Cooper, Tabaddor, & Hauser, 1983; Frankowski, Annegers, & Whitman, 1985; Whitman, CoonleyHoganson, & Desai, 1984), bringing an even greater number of minorities into rehabilitation facilities. Minorities with brain injury often face socioeconomic (SES) and insurance status barriers that impact whether they receive inpatient rehabilitation. For those minorities who are fortunate enough to receive such services, studies show that health disparities remain in long term outcomes, even after accounting for SES and insurance factors (Arango-Lasprilla & Kreutzer, 2010; Institute of Medicine, 2001; Rosenthal et al., 1996; Stewart & Napoles-Springer, 2000). The issues driving this effect are multi-faceted including mistrust of health care professionals, racism, environmental barriers impacting accessibility, quantity and quality of education, lack of bilingual professionals, as well as the lack of culturallyrelevant assessment tools.
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2. Current trends There is a growing body of research investigating the aspects of culture that impact rehabilitation outcomes. A literature search using the Ovid MEDLINE, Ovid Healthstar, and PsycINFO databases showed an increasing trend in publications in peer-reviewed journals over the past 30 years dealing with diversity in the areas of disability and rehabilitation (see Fig. 1).
Fig. 1.
This evolving body of research can be utilized to inform the way we interact with patients in terms of how we interpret their behaviors and respond to them. Clinical experiences can also provide a basis for future research by identifying problematic issues not adequately addressed in the literature. The goal of this paper is to illustrate some of the issues of cultural diversity that may be encountered when working with diverse individuals recovering from brain injury in an acute rehabilitation setting to supplement the literature with real-world clinical examples. Culture influences a patient’s presentation of symptoms, perception of illness and disability, expectation for recovery, use of rehabilitation services, and consequently potential for improvement. Culture equally influences a clinician’s response patterns to the patient, which can have a profound impact on many aspects of a patient’s experience of rehabilitation. Utilizing a more culturally appropriate clinical approach that is tailored to the needs of the individual is necessary for full patient engagement in the rehabilitation process in order to maximize treatment outcomes after brain injury and minimize health disparities.
3. The concept of rehabilitation The process of rehabilitation, especially in an inpatient rehabilitation setting, may appear to follow a
traditional medical model in which the doctor is seen as someone who typically orders tests, prescribes medications, and administers treatments to the patient, who plays a more passive role. The presence of doctors and nurses often contributes to the patient’s perception that they are going to be given a treatment that will cure their ailment. It is important to educate patients who come to rehabilitation and their families that there are fundamental differences between an acute care hospital and a rehabilitation facility. In the rehabilitation setting, the doctor plays a more collaborative role, and the patient is expected to bear greater responsibility for achieving treatment goals. For individuals from a Western cultural orientation, wherein mastery and individualism are prized, the patient may be more inclined to assume responsibility for realizing treatment goals. However, for individuals from diverse cultures, this conceptual leap may pose a barrier. In some cultures, doctors are often only recognized as authority figures whose goal is to heal, such that the idea of a patient forming a partnership with the treating clinician or therapists may be a foreign concept. Patient education must explicitly address these issues so that the patient and their family gain a full understanding of rehabilitation in terms of patient rights and responsibilities as well as expectations of outcome. Research has shown that certain minority populations may have developed a mistrust of healthcare providers (Alston, 2003; Benkert, Hollie, Nordstrom, Wickson, & Bins-Emerick, 2009; Boulware, Cooper, Ratner, LaVeist, & Powe, 2003). Gaining a sense of trust is important to developing a therapeutic alliance. Being aware of the world view of the population being treated will allow the rehabilitation professional to determine the most effective way to collaborate with patients and their families to set mutual outcome goals, thereby establishing healthy relationships between the patient and the rehabilitation staff. Such rapport development is critical in ensuring that rehabilitation staff better meet patient needs and achieve a successful outcome.
4. Culture and family Because involving families in treatment is a part of many rehabilitation programs, it is important to understand how cultural influences can interact with family dynamics to impact behavior. Although it may not be readily appreciated, the majority American culture possesses an individualistic world view in comparison with that of other cultures. For example, many other cul-
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tures place greater importance on the family unit than the individual. Despite being encouraged to allow the patient to attempt to carry out tasks independently, there can be a strong cultural tendency for family members to tend to the patient at every instance where struggling may be detected. Consider the following example.
promote successful, culturally sensitive treatment and improve outcomes. Another example of the complexity of brain injury within a cultural context is presented in the example below.
4.1. Example A
A monolingual Spanish-speaking patient in rehabilitation was informed by her husband that their 7-year-old child had been killed in a car accident. The husband, a Hispanic male, yelled out loud in Spanish as if speaking to God, “Why her? Please God, take me instead.” The patient, recovering from a brain injury, displayed the same behavior as her husband and appeared to be writhing in physical pain. To the staff, the patient’s behavior was considered to be restlessness or agitation commonly seen after brain injury, and the husband’s behavior was seen as excessive, overly dramatic, and contributing to the agitation of the patient. The Spanishspeaking neuropsychologist, who was called to assist with the situation, observed that security was in the process of removing the husband from the building due to his disruptive behavior, and the staff was considering sedating the patient to calm her. The neuropsychologist assessed the situation and redirected security to allow a separate room for the patient and her husband to grieve together, where other patients would not be disturbed. The nurse and aide remained with the patient to monitor her status and ensure her safety. The attending physician was in agreement that a pharmaceutical intervention for agitation could be postponed as long as the behavior deescalated. In many Hispanic cultures, physical gestures such as beating one’s chest or collapsing from grief are not unusual after the death of a loved one. In some cases, the outward display of grief and exclamations to God or the spirit of the deceased are not only common, but an expected show of love, whereas a more subdued display can be interpreted as indifference to the loss. Being allowed to grieve in a culturally appropriate way with the spouse had a calming effect for both the patient and her husband and the only active intervention needed was monitoring for safety. If security had removed the husband from the building, it is likely that the patient would have had a much more difficult time self-regulating her emotions in the absence of her spouse who was accompanying her in her grief and providing comfort through a shared experience. As can be seen in the above example, “business as usual” can be inappropriate when dealing with diverse populations. The staff immediately attributed the patient’s outward expression of grief to agitation
A 60-year-old, Asian male with a brain injury was learning how to use adaptive utensils for feeding. The occupational therapist educated the patient’s wife about how to cue him if necessary so that he could feed himself. The patient’s wife tried to be present for every meal and was noted several times to be spoon feeding the patient despite repeatedly being told not to do so by staff. Initially it was assumed that the wife did not understand the importance of fostering independence in the patient. Before long, she was labeled as noncompliant while the husband who passively allowed her to feed him was labeled as being lazy. The treating neuropsychologist was consulted. Having encountered similar situations in the past, he suggested that their behavior may be better viewed as a fulfillment of cultural roles in the face of illness or injury rather than non-compliance. He suggested that it may be unreasonable to expect her to refrain from helping. To increase her adherence with rehabilitation goals the psychologist worked with occupational therapy to develop other ways that the wife could provide assistance so that she could actively fulfill a care-giving role to her husband, while enabling the patient to develop independent feeding skills. The intervention was ultimately successful because the rehabilitation staff identified the cultural needs and incorporated them into treatment. The above example illustrates the importance of considering alternative explanations for a patient’s behavior before making a judgment that could influence treatment. Based on what the staff knows about brain injury, it is easy to assume that the patient’s behavior suggests lack of carry-over of what was learned in occupational therapy. The patient’s passivity may be construed as apathy, a common sequela of brain injury (Kant, Duffy, & Pivovarnik, 1998). One’s understanding of brain injury alone may not be sufficient due to the influence of culture on behavior. This example can be viewed from the standpoint of rehabilitation goals. In the United States the goal of independence is stressed as opposed to the interdependence often stressed in other cultures (Stanhope, 2002). Finding a way to bridge this gap in the processes and goals of rehabilitation is important to
4.2. Example B
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and restlessness, common sequelae of brain injury. While it is quite possible that the patient’s behavior may have been somewhat exaggerated by disinhibition, the behavior itself can be more accurately viewed as a disinhibited, culturally appropriate response. Being sensitive to cultural issues is necessary for understanding patient behavior and effective treatment delivery. In complex cases, a number of factors can come into play and influence the perceptions of patients and their families. Being culturally sensitive can be challenging when there is a complex interlay of diversity factors. This is shown in the following case illustration. 4.3. Example C Upon admission to the rehabilitation facility, a 35year-old Hispanic male presented with right-sided hemiparesis, decreased initiation, and word-finding difficulties. Though premorbidly, he was fluent in English and Spanish, his hemorrhagic stroke had left him with severe expressive impairments in both English and Spanish. His preferred language of communication was Spanish, and post-stroke language ability consisted of providing one-word responses to questions, with gradual increases in his ability to string together several words to form an idea. This case was complicated by the fact that the patient was gay and in a long-term relationship with American man, yet all of his family (except a cousin) had no knowledge of his sexual orientation, or of his relationship. His partner was with the patient at the time at which he incurred the stroke and was by his side throughout acute care and now in inpatient rehabilitation. The patient was very close to his family, yet did not initially want his family to be contacted in order to conceal his relationship and sexual status. Ultimately the partner convinced the patient to contact his family. His cousins, who were the first to arrive, were initially taken aback to learn of the patient’s being gay, yet quickly accepted this fact. The family members and the partner had differing opinions about whether “coming out” to other family members was in the best interest of the patient. The partner understood that the patient wished to share his sexual orientation with the rest of his family, whereas the cousins felt it was better to protect the patient from the scrutiny of other relatives. Escalating tension between these parties led to the cousins feeling that only “la sangre” (i.e., blood relatives) should be present. The impending arrival of the patient’s mother added pressure to the existing tension between the partner and the patient’s family. Ultimately,
a neuropsychological consult was ordered to determine capacity. The neuropsychological evaluation revealed that the patient was indeed able to make his own decisions, but that his responses to “Yes/No” questions were unreliable. It was deemed that in order to ascertain the patient’s true wishes, he was required to express himself using sentences. After having set these ground rules, the neuropsychologist helped mediate a discussion between the Spanish-speaking cousins and the English-speaking partner. From this group effort, it was able to be ascertained that the patient did not want his mother to know of his sexual orientation. Further, the patient wanted his partner to visit freely, but withhold intimate displays of affection while the mother was present. This compromise was acceptable to all parties, resulted in decreased anxiety surrounding the situation, and allowed the patient to shift focus to rehabilitation. The neuropsychologists’ awareness of both Hispanic cultural values and Hispanic cultural viewpoints regarding sexual orientation was critical to achieving a successful resolution to the family conflict. The above example contained an interaction of two diversity factors (i.e., ethnicity and sexual orientation) that influenced the behavior of the patient, family, and partner. The family saw the partner as a stranger because his existence was kept secret. There were also attributions made about him by the patient’s family based on his age, sexual orientation, and European-American heritage. They saw him as taking advantage of the situation as an opportunity to push the patient “out of the closet” before he may have been ready. The patient’s brother was extremely anxious about other family learning about the patient’s orientation and did not want his brother to be seen as less of a man, a common perception of gay men within the Hispanic culture. The patient seemed apathetic and was quick to respond in agreement without fully processing the situation. Although the patient ultimately had the capacity to make decisions about his social life, he required some assistance to arrive at an informed decision. An explicit description of the situation in his primary language helped him to see the implications of potential decisions more clearly and cueing him to speak in full sentences to express his wishes provided greater confidence of his capacity and ensured that he was not passively agreeing with questions posed to him about how he wanted the situation to be handled. Perhaps the most important aspect of this intervention was that it reduced the anxiety of all involved and quelled the family “drama” before it became a distraction to the patient. It enabled him to focus on his rehabilitation therapies and maintain the
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support of his partner and family of origin through compromise. A month later, the partner and the patient’s brother both accompanied him to outpatient therapy. They thanked the neuropsychologist for his intervention as it enabled the family and the partner to cooperate in caring for the patient after discharge. Diversity of culture often comes along with diversity of language which can pose challenges for communication between the professional and the patient.
5. Language More than 55 million Americans speak a language other than English in their homes (U.S. Census Bureau, 2008). Non-English-speaking immigrants to the United States often reside in neighborhoods with higher densities of individuals of their culture and/or country of origin. For this reason, it is not uncommon for an immigrant to live in the US for years without learning English. The effects of limited English proficiency (LEP) on daily life can be far reaching, impacting everything from health care utilization to quality of care (Timmins, 2002). A communication barrier due to LEP can make patients from diverse linguistic backgrounds feel more vulnerable and be less likely to self-advocate, ask relevant health questions, and express their basic needs (Ledger, 2002). This barrier can be especially problematic in brain injury rehabilitation due to the level of patient involvement required. Non-English speakers have been shown to have poorer functional outcomes after brain injury (Marquez de la Plata et al., 2007). The nature of treatment delivery in rehabilitation therapies requires effective communication. Patients with LEP are at risk for not fully benefiting from services. They are also at risk for further injury if safety precautions are not effectively communicated. All too often, clinicians use family members to translate. Because it is common for the younger generations to speak English due to their involvement in an Englishspeaking school system, the translating responsibilities are often left to children. Although, utilizing the child as an interpreter may be convenient, it places him/her in an awkward position. Asking a child to translate exposes them to situations, knowledge, and private and intimate data that may be inappropriate for them to be acquainted with at their age (Karliner, Jacobs, Hm Chen, & Mutha, 2007). Family members may choose not to translate certain messages that may be seen as having the potential to make the patient upset. Rather, use of a trained inter-
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preter is a preferred approach, and in fact is advocated by the National Standards for Culturally and Linguistically Appropriate Services (CLAS) in Health Care by the U.S. Department of Health and Human Services Office of Minority Health (Office of Minority Health, 2001). Further, use of a trained interpreter can promote feelings of being respected, resulting in improved patient satisfaction with services. Briefing the interpreter prior to the interaction with the patient informs them of the objectives of the visit and can minimize bias or undue influence on the part of the interpreter. Assessment of cognitive deficits after injury can be challenging when working with individuals of diverse cultural and linguistic backgrounds. There are drawbacks to using an interpreter to translate standardized tests for a myriad of reasons. In addition to the basic message or intent of test items becoming lost in translation, there are bigger problems associated with cultural bias that a simple translation cannot address. In fact, research has shown a strong effect of culture on nonverbal tests that are not primarily language based (Rosselli & Ardila, 2003). Normative data should be inclusive of the population being tested to the point where it is representative. Otherwise, standardized scores would be meaningless. Although the use of racebased norms has been investigated, it is argued that they are problematic mainly in the way the concept of race conflates a number of underlying variables such as education (quality and quantity) and socioeconomic status that often drive these disparities in test performance (Gasquoine, 2009). “Acculuration” is generally understood as the degree to which an individual immigrating from another culture assimilates to the language, customs, and world view of the majority society. Acculturation has been shown to be associated with performance on neuropsychological tests and should be measured when assessing individuals with brain injury from diverse cultural backgrounds (Kennepohl, Shore, Nabors, & Hanks, 2004).
6. Community reintegration Research has shown that “community reintegration,” a common goal of rehabilitation, may not have the same meaning for everyone. While return to work or school is a typical focus for rehabilitation therapies, there are other aspects of community participation that may be more important for diverse populations. Community participation is a social construct, and is therefore sensitive to socio-cultural norms that may
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sometimes better account for response choices apart from one’s level of impairment. For example, Sander and colleagues (2010) found that Blacks and Hispanics prioritized domestic activities, such as parenting, housekeeping, and cooking, as more important compared to how they were rated by Whites (Sander, Clark, & Pappadis, 2010). For patients with diverse religious backgrounds, the goal of interest may be returning to church. Community reintegration is strongly impacted by the cultural environment to which the patient wishes to return. It is common for individuals to immigrate to the U.S. in order to find work to support their families living domestically and/or abroad. Individuals with LEP may be restricted to accepting manual labor jobs that place them at greater risk for injury. This is compounded by the fact that many of the jobs may be “off the books” where employers are exploiting undocumented immigrants by undercompensating them and failing to meet health and safety standards in the workplace. For example, if warning signs and labels on chemicals appear only in English, then safety practices in the workplace may not be effective for individuals with LEP. In addition to these conditions posing a greater risk for injury, the nature of the manual labor may preclude any possibility of returning to the same line of work after brain injury if the physical demands and work conditions are not appropriate, depending on the patient’s residual deficits. Because return to employment has been identified as an area of disparity after brain injury, these factors must be taken into account by clinicians in setting rehabilitation goals (Arango-Lasprilla, Ketchum, & K., 2008). Discharge planning that includes vocational rehabilitation could serve to explore the patient’s strengths and weaknesses and assess interest in possible lines of work appropriate for the patient. While it is desirable to evaluate strengths and weaknesses in the patient’s primary language, a formal measure of English proficiency can be useful in placing the patient in the appropriate work environment.
7. Religion Because individuals often present to rehabilitation after a traumatic event, it is common for patients adopt an existential frame of mind. Being aware of the patient’s religious background can help the clinician to better interact with the patient as they recover from injury. Individuals from certain devout religions may feel that their injury is a punishment from God for sins
they have committed. Such individuals stricken by guilt can feel defeated and may be reluctant to participate in therapy. At the other end of the religious spectrum, a person of faith may hold onto hope with the belief that God will heal them through prayer such that participation in therapy would be viewed as a lack of faith in God’s power to heal them. Misconceptions about brain injury tend to be common among ethnic minorities who identify as active practitioners of their religion (Pappadis, Sander, Struchen, Leung, & Smith, 2011). It is often difficult to foster motivation within these patients while still respecting their religious beliefs. If available, pastoral counseling can help such patients cope with adjustment issues within the framework of their fundamental beliefs about life.
8. Diversity in the patient-provider dyad Just as staff must understand their own preconceived notions about other cultures, it is important also to recognize that even patients come with their own prejudices. Perceived racism and sexism are portrayed in the following example: 8.1. Example D A patient, born and raised in Africa, was admitted to a rehabilitation hospital after sustaining a brain injury. He was confused, agitated, and combative for several days. As he cleared from his confusion, staff noted him to have a lingering irritability. The patient told several staff members that the Caucasian case manager assigned to him was racist. When word got back to the case manager, she was brought to tears by the accusation and from that point on refused to speak to the patient without a third party present. According to the patient, the case manager spoke to him about his personal business (discharge planning) in an area where many people could hear the conversation. The patient demonstrated some of her mannerisms and body language (crossing her arms and legs) and found it to be conveying a lack of respect. The patient repeatedly touched on themes associated with the case manager being a woman and speaking to him “in such a way.” In the patient’s culture, women were expected to be passive. The case manager’s questioning and body language was perceived as offensive, and the fact that she was doing it in a somewhat public area was humiliating and emasculating to the patient. His response was to label her as racist. In speaking with the patient, it became clear that he had
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been the victim of racism in the past because of his outward appearance and thick accent. In this case, however, the attribution of racism as the motivator of her behavior was less clear. Although it may seem that he was misinterpreting her body language due to a complex interaction of decreased social awareness after injury and a violation of his cultural norms with regard to gender roles, it is quite possible that the case manager’s opinion of the patient as a sexist (based on the way he treated female staff) was unconsciously being expressed as disdain in her behavior toward him. Interpersonal interactions between patient and staff can be complicated by issues of diversity. It is not unheard of for a patient to make racist comments about a rehabilitation professional who may be culturally diverse. Although most people hold a variety of preconceived notions about people from other cultures, a brain injury that results in disinhibition can allow racist thoughts to leak out in words or offensive behavior. Even if it were possible to match every patient with staff that is culturally similar, there is much debate on the proper course of action in these cases (Kamochi et al., 1999). This has been discussed as an ethical issue associated with proper treatment of the patient vs. the rights of the health care provider to a non-hostile work environment. Attributions of the health care worker can influence how they are affected by racism on the part of their patients. A recent study showed that nurses who attributed racist behavior to the mental illness of the patient experienced less distress in working with the patients in an institution (Deacon, 2011). Unfortunately, there is very little research on the potential consequences of a given course of action in these instances, making it very difficult for the rehabilitation professional to provide an evidence-based response.
9. Cultural competence In the seminal monograph by Cross, Bazron, Dennis, and Isaacs (1989), cultural competence is defined as “a set of congruent behaviors, attitudes, and policies that come together in a system, agency, or amongst professionals and enables that system, agency, or those professionals to work effectively in cross-cultural situations” (Cross, Bazron, Dennis, & Issacs, 1989). The development of cultural competence has been conceptualized as a process. One of the most important steps in moving toward the goal of competence is to recognize one’s own world view (Niemeier & Carlos ArangoLasprilla, 2007; Niemeier, Burnett, & Whitaker, 2003).
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Ethnocentrism often creates a lens through which we view the world and interpret situations according to our own cultural values. A culturally competent clinician is aware of his/her own ethnocentrism, withholds assumptions, and remains open to the possibility that there may be cultural factors guiding a patient’s perception and behavior. Education though experience is key to gaining a better understanding. With more experience working with other cultures, it may become clear that all individuals from the same culture may not hold the same views or behave the same way. There is often great variation within a given culture (Costigan, Bardina, Cauce, Kim, & Latendresse, 2006). For example, those who are categorized as “Asian” may be seen by Westerners as being the same. Even though non-Asians may perceive Asians to have the same facial features and sound to their languages, “Asian” represents a heterogeneous group of individuals. While there are definite patterns of behavior in common within Asian cultures, there are also substantial differences in terms of country of origin, traditional foods, and language or dialect. “Asian” is often a blanket terminology that includes cultures such as Chinese, Japanese, Korean, Vietnamese, and many others. Even looking only within China we can find a variety of dialects and differences in geographic origin, level of education, socioeconomic status, and level of acculturation can impact the vocabulary, pronunciation, or even proficiency of reading, writing, and speaking that language. Keeping an open mind with these possibilities can allow one to develop a more refined cognitive schema when working with culturally different individuals while being careful not to stereotype. Treating a patient with a level of sensitivity to cross cultural, intraethnic, and individual issues can have a profound impact on the patient’s rehabilitation experience. With therapeutic engagement playing an integral part in rehabilitation progress (Lequerica & Kortte, 2010; Lequerica et al., 2007), providing culturally sensitive treatment can enhance rapport and has the potential to impact outcomes after acquired brain injury by enhancing the patient’s involvement as an active agent, cooperating with the rehabilitation team to achieve goals. Providing patients with a pleasant experience can also help to increase future healthcare utilization. This effect on future healthcare utilization is highly important due to the chronic nature of sequelae after ABI. Although there is increasing interest in cultural diversity in the health care literature, more research is needed to better understand the complex interaction of cultural factors in the rehabil-
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A. Lequerica and D. Krch / Issues of cultural diversity in ABI rehabilitation
itation setting that impact patient behavior after ABI and to develop ways to improve treatment accordingly to reduce health disparities and improve long term outcomes for the diverse individuals impacted by ABI.
10. Summary These vignettes that touched on ethnicity, sexual orientation, language, and religion were loosely based on actual events, but altered to protect confidentiality and fully illustrate the concepts of diversity being discussed. It is important to keep in mind that the diversity encountered in many rehabilitation settings may extend to include a myriad of other subcultures too vast and complex to present here in any great detail (generational, social class or socioeconomic status, urban vs. rural, etc.). Nevertheless, there are certain themes that serve as a point of focus in developing skills necessary to effectively provide treatment to individuals with brain injury from diverse backgrounds.
11. Limitations and future directions The examples provided were situations where a successful intervention was provided as a model. Unsuccessful interactions are not discussed here but can have an equally profound impact if the clinician takes the time to better understand the dynamics of their interaction. For example, a male clinician who extends his hand to greet the wife of a patient from another culture and is greeted by the shaking of her head to indicate “no” needs to take an additional step to arrive at an understanding of that response (This case refers to cultures where females are not allowed to touch or be touched by men other than their husband). Taking the effort to research this response can enable the clinician to modify their behavior on future encounters by not being the first to extend a hand to shake hands until the other party does so first. Interactions that are culturally congruent often convey a sense of respect that contributes to the therapeutic alliance. The current article was guided by the premise that the bridge between research and practice is bidirectional. While research translation into evidence based treatments is an ultimate goal, this article highlights the pathway from clinical practice to research in the sense that careful observation of events in the clinical realm identified issues that guided a literature search and highlighted research that has been conducted on these topics.
One limitation of this article is that the vignettes reflect specific experiences told in the style of two authors who just as everyone else, have their own world views and potential biases in their perception of events. Wherever possible, research literature associated with the real-world examples was discussed. However, this was not meant to be a systematic literature review on cultural factors in brain injury rehabilitation as that has been conducted elsewhere (Gary, Arango-Lasprilla, & Stevens, 2009). Rather, the goal was to highlight real world clinical situations working with a diverse population of patients recovering from brain injury to raise awareness and sensitivity of these issues among both researchers and clinicians so that future investigations can focus on development of culturally sensitive clinical practices in the hopes of reducing outcome disparities in rehabilitation. Future research is needed to better understand the complexity of cultural factors and how they interact with patient, provider, and environment to impact outcomes. In the realm of clinical practice, there is great potential for the development of culturally and linguistically adapted education programs for inpatients and their families, as well as outreach programs to increase follow-up rates among diverse populations. Communication among researchers, clinicians, and consumers is vitally important to develop patient-centered interventions for all individuals recovering from brain injury.
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