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Clinical Forum |
Contact author: Elise Davis-McFarland, 204 Grove Street, Charleston, SC 29403. E-mail: elise.davis-mcfarland{at}tridenttech.edu.
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ABSTRACT |
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 TOP ABSTRACT CONCLUSIONREFERENCES |
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Purpose: This article presents a rationale for speech-language pathologists (SLPs) to provide culturally competent evaluation, diagnostic, and intervention services for children with oral motor, swallowing, and feeding disorders in school settings. There is also a discussion of how changing American public school demographics necessitate the consideration of cultural issues and family-focused approaches to dysphagia services.
Method: This article provides an overview of cultural, religious, and health beliefs of several ethnic groups, as well as information on the dynamics and requirements of cultural competence and family-focused intervention. Ethnographic interviewing is presented as a culturally sensitive diagnostic method. Information on structuring a culturally relevant individualized educational program process is provided. Guidance in the use of interpreters and translators is also offered.
Conclusion: Attention to cultural and family issues in the diagnosis and treatment of dysphagia in a school setting optimizes the opportunities for successful outcomes and better meets the needs of children and families from culturally/linguistically diverse backgrounds.
KEY WORDS: dysphagia, cultural competence, school setting
Speech-language pathologists (SLPs) provide diagnostic and clinical services for children with oral motor, swallowing, and feeding disorders. In addition to providing appropriate diagnostic services and therapies, clinicians must also possess the knowledge and skills necessary to work effectively with families and provide services that are clinically effective and culturally relevant. Culture is an important dynamic in the therapeutic process (Riquelme, 2004). Social acculturation begins at birth. Culture is the filter through which people view the world and evaluate all aspects of their existence. Children and their parents will hear and understand the SLP's instructions and explanations through their cultural antenna. The extent to which the recommendations and therapies are consistent with the family's cultural values may determine the extent to which the family will understand, accept, and comply with the therapeutic program. This article will explore the nature and importance of culturally relevant assessment and treatment of pediatric dysphasia.
Demographic Changes in America
America is a nation of people of diverse nationalities, ethnicities, religions, and lifestyles. Historically, most Americans had a rich European heritage. However, the country's immigration patterns have changed significantly in the past 60 years.
In 1950, 89 percent of foreign-born documented residents came from Canada and Europe. By 1970 that figure had dropped to two-thirds, and in 1990 it stood at 26 percent. Meanwhile, immigration from Latin America and the Caribbean rose steadily from 6 percent in 1950 to 19 percent in 1970 to 43 percent in 1990. Asian-born immigrants accounted for one quarter of the 1990 totals, and 6 percent came from Africa and other parts of the world. (Niedringhaus, 1999, p. 5)
America is fast becoming more racially and ethnically diverse. Americans are becoming darker in hue; increasingly, English is their second language; and business people, health care providers, and teachers are paying more attention to cultural diversity. Table 1 demonstrates that there will continue to be rapid changes in Americans' racial and ethnic origin.
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The diversification of the population brings new cultural dynamics to America. Children and families come to the schools with different expectations, ideas, beliefs, and communication and therapeutic needs. In order to provide the best services and get the desired diagnostic and therapeutic outcomes, SLPs must be able to provide culturally relevant services to children with oral motor, swallowing, and feeding disorders and their families.
The Individualized Educational Plan (IEP) Process
Parents have an important role in the IEP process. Their role is mandated by the 1975 Education for All Handicapped Children Act, now known as the Individuals With Disabilities Education Act (IDEA). The 1997 reauthorization of IDEA strengthened the parental involvement requirement by mandating that schools provide an opportunity for active parental participation in decisions concerning their children's education (Smith, 2001). The many advantages of having parental involvement in the IEP process include communication with the parent to help the educational staff better understand the child's environment, improved communication between the parents and the school, increased understanding by the parents of the educational process and plans, and an opportunity for parental input in the development of the education plan. The child's compliance with the IEP and parental participation are both likely to be increased with parental involvement and agreement.
Although parental involvement in the IEP process is mandated, parents do not always participate. Lack of participation can be taken to mean that the parents are satisfied with the decisions that the educational team has made, or it can be interpreted as parents' lack of interest in their child's welfare and/or the educational plan. However, lack of participation can also be related to barriers that prevent or lessen the likelihood of parental participation. Parents from culturally diverse backgrounds and non-Anglo-European cultures may be especially challenged in this regard.
Barriers can include communication issues in which the parents' first language is not English or they may feel that their meager English skills will compromise their ability to participate in the IEP meeting. Another barrier can be the educational jargon that is used in the IEP and oral communication about the education plan. For parents who lack facility with English, are uneducated, or are unfamiliar with educational jargon, the process can be confusing and intimidating. Parents' participation may also be stymied by their lack of knowledge about how to help and assist their children in gaining the skills they lack. Parents may feel that the educational team does not understand their culture, and in turn will not understand them or their child. Some parents may be from cultures in which parents are not expected to be involved in the children's education. Teachers may be perceived as authority figures, and parents may not feel comfortable disagreeing with them. Parents' participation may also be hindered by logistical challenges such as lack of transportation and child care.
The important and often complicated issues surrounding oral motor, swallowing, and feeding disorders in children make it especially important that the child's parents be involved in the planning and implementation of the IEP. The clinician who is sensitive to the potential barriers for the culturally/linguistically different parent should make every effort to ensure that the parents are included and have meaningful input in the IEP process. There are several ways this can be accomplished. Communication with the parents before the IEP meeting will give the parents an opportunity to talk with the clinician and develop a rapport. It can also demonstrate to the parents that their input and wishes are valued and will be respected. Parents should be encouraged to bring an advocate or another family member to the IEP meeting if they desire. A translator should also be provided if needed. Special care should be taken throughout the IEP process to ensure that the parents' wishes and ideas are considered and included. As the IEP meeting progresses, special attention should be paid to the following areas:
Dysphagia in the Schools
Each year, more children with complex medical and developmental disorders are educated in America's pubic schools via special education programs, resource support, and inclusion strategies that allow them to be educated in the least restrictive environment. Medical advances have resulted in increased survival rates and significantly improved quality-of-life opportunities for children with severe medical and developmental challenges. Also, since 1975, a series of public laws (Education for All Handicapped Children Act, 1975; IDEA, 1997, 2004) have mandated that children with severe disabilities receive an appropriate public school education. For these children, an appropriate education may require remedial and rehabilitative educational programming and intervention. For children with swallowing and feeding disorders, dysphagia therapy may be necessary to facilitate the child's realization of his or her developmental and learning potential. In order to learn, children must be able to receive nutrition and hydration to maintain their stamina, attention, and vitality (Arvedson, 2000).
School dysphagia programs may differ from school to school or school district to school district. Programs may consist of a single SLP who serves one school or several schools or an interdisciplinary team that includes the SLP, an occupational therapist, physical therapist, nurse, teacher, dietician, and parent(s) of the child receiving dysphagia therapy. The team may work in a single school or several schools. The SLP or the dysphagia team must maintain close, consistent communication with the child's physician and health practitioners to ensure coordination of services and good outcomes.
Diagnosis and treatment of dysphagia requires good communication between the SLP and the child's family. The SLP will have to get a developmental history from the parents as well as comprehensive information about the child's swallowing and feeding capabilities, food choices, and mealtime routines. The child's parents will also have to be educated about the child's dysphagia and feeding therapy program so they will understand the program goals, processes, and outcomes.
In order to develop a successful dysphagia program, the SLP must develop a productive relationship with the child's parents. In addition to being skilled in dysphagia evaluation and management, a culturally competent SLP will be able to discern the family's cultural mores, find out about their food preferences, and try to understand their beliefs about health, illness, and developmental disorders, as well as how those beliefs may impact what the SLP wants to accomplish with the dysphagia program.
Case Study
Marion was the SLP on the Carson County (New Mexico) School District interdisciplinary dysphagia team. The team served the district's five elementary, four middle, and two high schools. In addition to Marion, the team included an occupational therapist, a physical therapist, and a nurse practitioner, as well as an experienced special education teacher and a pediatric dietician from the local community hospital who consulted with the team as needed.
The team received an evaluation consult for Carlos Montoya, a 5-year-old kindergarten student. At the age of 3 years, Carlos was diagnosed with mild spastic quadriplegia. At age 5, he weighed 65 lbs and was 40 inches tall, which put him at the 25th percentile for weight and height for his age. Carlos's school records indicated that his family relocated from Mexico to New Mexico 3 years earlier. Carlos's father had completed tenth grade and his mother had completed eighth grade. Spanish was spoken in the home. Marion went to Carlos's kindergarten teacher to get some additional information about Carlos and to observe him in his classroom. The teacher told Marion that she had met Carlos's mother twice and that she spoke some English and was very interested in Carlos's progress.
The team contacted Carlos's family and asked them to come to the school for a case history and diagnostic interview. When the team gathered to plan for the parent interview, Marion offered to lead the interview for the team. She said she felt that if all of them were to ask Mrs. Montoya questions, she might be intimidated. They agreed. Marion said she wanted to conduct an ethnographic interview. The team agreed on the information they needed from Mrs. Montoya, and Marion developed a series of descriptive questions that she thought would solicit the information.
Mrs. Montoya's neighbor brought her to the school. Although Mrs. Montoya seemed to understand English well enough, her spoken English was more limited. Mrs. Montoya's neighbor translated for her. Mrs. Montoya told the team that she and her husband had immigrated from Mexico 3 years earlier. Her husband worked as a construction laborer, and she stayed at home to care for Carlos and his three older brothers and sisters. She said that this was Carlos's first year in school. Mrs. Montoya reported that Carlos was born 2 months prematurely. She said she was very disheartened by Carlos's cerebral palsy, which she said was caused by an evil spirit that had plagued her family for generations. She said she had a younger sister who was born "just like Carlos." She told the team that she had not taken Carlos to a doctor when he was born because she knew there was no cure for conditions imposed by evil spirits. She said she finally took him to the doctor when they moved to New Mexico because Carlos was so small and he did not eat well. When Marion asked her about Carlos's eating habits, Mrs. Montoya said that Carlos would eat only a few "soft" foods. She said he had trouble chewing, and she demonstrated how he would repeatedly push his tongue to the roof of his mouth to soften the food enough to swallow it. Mrs. Montoya said that her husband made Carlos a chair to sit in at the table. She said Carlos seemed to be able to eat a little more when he sat in his chair. She said Carlos often coughed when he ate. She also reported that he had pneumonia when he was 3 and again within the last 4 months. When Marion asked Mrs. Montoya what she wanted for Carlos, she said she wanted him to be able to eat and walk and play like his older brothers.
The physical therapist evaluated Carlos and found him to have good head control, increased flexion in the upper extremities, fair trunk control, and mild orthopedic deformities of the lower extremities. Marion performed an oral motor and swallowing evaluation, which revealed that Carlos's feeding problems were characterized by poor jaw and tongue control with jaw and tongue thrusting and retraction that interfered with his ability to handle food and liquids. He also had oral and facial hypersensitivity that interfered with his ability to take food from a spoon and cup. Later, a videoflouroscopic study revealed pharyngeal residue and aspiration.
Marion began to develop an oral motor stimulation and dysphagia program for Carlos. But before finalizing it, she thought she should make a home visit to see Carlos and his mother in their home. Marion called Mrs. Montoya to ask if she could visit, and Mrs. Montoya seemed eager to have her come. When Marion arrived, the neighbor who had brought Mrs. Montoya to the school was at the house. The Montoyas lived in a small, modest house that was sparsely furnished and well-kept. There was a large table in the kitchen. Mrs. Montoya told Marion that the family ate all of their meals together at the table. Marion saw the chair that Carlos's father had made for him. It was made of a plastic-like material and resembled a Tumbleform seat. To Marion's delight, the chair was a nice accommodation for Carlos's mild tone abnormalities, and it allowed him to sit in a comfortable upright position.
Marion asked Mrs. Montoya to tell her about the foods that Carlos was able to eat and the foods that he would not eat. With her neighbor translating, Mrs. Montoya told Marion that Carlos could eat well-cooked beans if she mashed them, moist rice, cream of wheat, and well-cooked tortilla filling. She said he would also eat soft cookies if she crumbled them well. Marion asked Mrs. Montoya if there were foods that Carlos refused to eat. She said he would not eat pasta or bread, and that he did not like to drink milk or water. He preferred orange juice. Marion asked Mrs. Montoya if there were foods that Carlos did not eat that she would like him to eat. She said she would like Carlos to be able to eat paella because it was the dish she liked to prepare most.
Marion began to talk to Mrs. Montoya about Carlos's dysphagia and the program she had devised. She demonstrated how Carlos's jaw and tongue thrusting and retraction were interfering with his ability to chew and swallow. She told her she would begin by using some play techniques to stimulate his face and get Carlos to mouth his fingers, and some soft squeaky toys of different shapes and textures to minimize his jaw and tongue thrust and retraction. She told Mrs. Montoya that she would teach her how to use the toys with Carlos. She noticed that Mrs. Montoya looked confused. When Marion asked her if she had questions about what she was saying, Mrs. Montoya told her that she was taking Carlos to a curandero (healer), and she would have to ask him whether Marion's recommendations would help Carlos. Although she was surprised, Marion told her she understood her desire to seek the curandero's guidance. This seemed to please Mrs. Montoya.
Later that month, Mrs. Montoya and her neighbor came to the school for the IEP meeting. The dysphagia team went through their recommendations, checking periodically to be sure Mrs. Montoya understood and was in agreement. The physical and occupational therapists recommended a special walker and hand prostheses for Carlos. They provided pictures of the equipment. Each piece of equipment was labeled in Spanish with an explanation of its purpose. When it was Marion's turn, she revisited the information she had shared with Mrs. Montoya during her home visit. Remembering Mrs. Montoya's desire for Carlos to be able to eat paella, Marion told Mrs. Montoya that having Carlos eat paella was one of the long-term goals. When Marion completed her part of the IEP discussion, to her surprise, Mrs. Montoya opened her purse and brought out two small squeaky toys that were very similar to the ones that Marion told Mrs. Montoya she would be using with Carlos. She gave them to Marion, saying the curandero had sent them for Marion to use with Carlos.
Feeding Practices and Food as Culture
There is a strong relationship between culture and foods (Graves & Suitor, 1998). Feeding practices and foods differ across cultures and are a reflection of beliefs about child nutrition and health needs. Food has important cultural implications for the treatment of children's oral motor, swallowing, and eating disorders.
Even within similar cultures, infant and toddler feeding practices may differ. For example, there is some diversity among Latino women's breastfeeding practices. Breastfeeding may not be the sole source of nutrition for newborn Mexican babies (Manella, Turnbull, Ziegler, & Martinez, 2005). Some mothers may supplement breastfeeding with sweetened herbal teas and commercially prepared milk formulas, especially during the first week of the infant's life (Manella et al., 2005). Mothers feel that the teas and formula are necessary to provide the newborn with sufficient nutrition. Mexican infants are likely to be weaned around 6–7 months of age. Mexican mothers tend to introduce their infants to solid foods earlier than Anglo American mothers (Wright, Holberg, & Taussig, 1988). Mexican children begin to try tortilla and salsa, in a soup or mole, by the age of 1 to 3 years (Manella et al., 2005).
Puerto Rican mothers often breastfeed their infants until they are 10–12 months old. Some mothers may begin giving their infants cereals, mashed plantain, carrots, and other vegetables as early as 2 months. Others are more likely to wait until their infants are 7–8 months old before introducing solid foods (Higgins, 2000). Puerto Rican mothers who bottle feed their babies may begin to add rice cereal to their babies' milk at 2 months (Higgins, 2000). Puerto Rican children are often allowed to continue with the bottle until they are ready to give it up. Some children continue with the bottle up to 3 years of age and even beyond because mothers say it is "easier" to allow the child to continue with the bottle than to "force" the child to give it up (Higgins, 2000). Puerto Rican mothers like their children to be "healthy" because big, robust children are considered beautiful (Higgins, 2000).
Latino mothers tend to wean their infants on fruits followed by vegetables as they get older (Manella et al., 2005). El Salvadoran mothers are more likely to feed their toddlers starches (e.g., corn, beans, potatoes, plantain, yucca) followed by vegetables (e.g., carrots, tomatoes, lettuce). Chicken, beef, and fish are also common in Hispanic and Latino children's diets. Dairy products and pork are less common in the Hispanic and Latino diet; however, as people of Hispanic and Latino ancestry become more acculturated, their dairy and pork consumption may increase (Romero-Gwynn et al., 2000).
For Latino women in America, there is a relationship between breastfeeding and the extent of their acculturation. The longer women stay in America, the less likely they are to breastfeed their infants (Guendelman & Siega-Riz, 2002). Latino women's decisions about breastfeeding appear to be less influenced by level of education and employment than Anglo American women's decisions (Wright et al., 1988).
Feeding practices among women of Asian ancestry differ in relation to their native country and their acculturation. Traditionally, women in Southeast Asia do not breastfeed their infants immediately. Infants may be spoon-fed cow's milk or sweetened water for a couple of days before being put to the mother's breast. It is feared that colostrum from the mother's breast may make the child sick. Once the mother's milk is clear, the baby is breastfed (Lefeber & Voorhoeve, 1999). In America, breastfeeding is very common among Japanese mothers (Lefeber & Voorhoeve, 1999). Korean mothers are more likely to bottle feed their infants (Gordon, Kang, Cho, & Sucher, 2000). Thai mothers may breastfeed their children up to 2 years of age (Gordon et al., 2000). Asian American mothers tend to wean their children later than Latino mothers (Horswill & Yap, 1999). Asian American mothers wean their children on rice, fruits, and vegetables. Chicken, fish, and tofu are usually introduced to Asian American children between the ages of 18–24 months, and pork is eaten less often than chicken or beef (Gordon et al., 2000). Korean Americans appear to be less prone to dietary acculturation than other Asian Americans (Gordon et al., 2000). Traditional diets are common in Korean households even after families have been in America for many years.
A study of Asian Indian and Anglo American mothers in the southeastern United States that controlled for age and socioeconomic status found that Anglo American mothers breastfed their infants longer and began giving them formula and solid foods at later ages than their Asian Indian counterparts (Kannan, Carruth, & Skinner, 1999). Most of the Asian Indian mothers discontinued breastfeeding when their babies were 3 to 6 months of age, whereas the Anglo American mothers were more likely to keep breastfeeding until 6 to 9 months. Twenty-eight percent of the Anglo American mothers were still breastfeeding their infants when they reached 12 months. None of the Asian Indian mothers continued to breastfeed beyond 10 months. The Asian Indian mothers introduced cereal, juice, fruits, and vegetables earlier than their Anglo American counterparts. All of the Asian Indian babies were given vegetables by 6 months of age (Kannan et al., 1999). The Asian Indian mothers reported that their relatives were the persons who were most influential in their decisions about infant feeding. The Anglo American mothers were most influenced by health care professionals (Kannan et al., 1999).
Breastfeeding decisions for women in the Middle East (Kuwait, Iran, Iraq) and Middle Easterners in America tend to be influenced by educational and socioeconomic levels. Middle Eastern women who are less well educated and less affluent are more likely to breastfeed their babies, whereas more educated and affluent Middle Eastern women are more likely to choose bottle feeding over breastfeeding (Al-Awadi & Amine, 1997; Dahl, 2004a). Vegetables are a staple of the Middle Eastern diet. Lamb is a basic meat. Ground meat is often combined with rice, herbs, spices, and vegetables. Milk products are also an important part of the traditional Middle Eastern diet. Yogurt is often the preferred form of milk. Vegetables such as eggplant, tomatoes, onions, okra, cucumbers, and pumpkins are common. Fruits such as apples, pomegranates, apricots, and mulberries are also common. Lentils such as chick peas, grains, and beans are also staples. Dietary prohibitions may include pork for Muslims and beef for Hindus. Some Hindus are vegetarians and do not eat any type of meat or fish; some may not eat eggs (Dahl, 2004a). Middle Eastern mothers are likely to wean their children on milk-based cereals, softened beans, fruits, and nonfibrous vegetables such as eggplant (Dahl, 2004b).
African American women are more likely to choose bottle feeding over breastfeeding (Baisch, Fox, Wjitten, & Pajewski, 1989; Forste, Weiss, & Lippincott, 2001; Gilen, Fade, O'Campo, & Paige, 1992; Parraga, Weber, Emge, Reeb, & Lerner, 2005; Wilson, 1989). African American women's decision about infant feeding is largely influenced by maternal education and socioeconomic level. Older African American women who are educated and have higher incomes are more likely to breastfeed their babies than are younger, less well-educated women (Wilson, 1989). Adolescent African American mothers are the least likely to choose to breastfeed (Parraga et al., 2005). Mothers who bottle feed may select commercially prepared formula or canned (evaporated or condensed) milk for infant feeding (Underwood et al., 1997). The American Academy of Pediatrics recommends against introducing solid foods to infants' diets before they are 4 to 6 months old (Wolfson, 2004). Some African American mothers tend to introduce cereals and solid foods earlier than 4 to 6 months because they feel that the formula should be supplemented in order to meet the infant's nutritional needs and to satisfy the child's hunger. African American infants may begin with small amounts of potatoes, rice, green vegetables, and fruits and then progress to meats and fish. Their foods are mashed and ground until the child is able to bite and chew. African American mothers may begin putting rice cereal in their infants' bottles as soon as the baby is 2–3 weeks old (Gilen et al., 1992).
There are many issues to consider when making food recommendations for children who are being treated for dysphagia. Knowing the family's culturally determined feeding practices and dietary preferences can help the SLP make appropriate dietary recommendations. Taking time to discuss the mother's ideas about feeding and her feeding preferences as well as the family's food attitudes may go a long way toward helping the SLP develop insight into the issues that will affect the family's understanding and acceptance of her recommendations. It is important to know what the child's favorite foods are so dietary recommendations will include foods that the child likes. The family's economic status may also affect their food choices. Working class and immigrant families may not be able to afford large quantities or varieties of foods. Other families may have religious or cultural prohibitions against eating some foods. Certain food textures and consistencies may also be culturally forbidden. The SLP will have to communicate with children and their families about their food traditions, preferences, prohibitions, and dietary restrictions. People who believe that foods have hot and cold properties may have to be convinced that certain foods are appropriate for their child. It is very important that the SLP consider the family's desires and preferences and get the family's input before finalizing recommendations about food types and textures.
Family-focused Intervention
The pediatric SLP will optimize treatment success by involving the child's parents. In all cultures, children are wards of their parents and are dependent on them for nurture, support, and care. Parents decide what is in their child's best interest. The family is the center of a child's life; therefore, family-focused care is the most desirable approach to the diagnosis and treatment of oral motor, swallowing, and feeding disorders in children.
Family-focused care is also referred to as family-centered care (Hammer, 1998). It means that the child's family members, especially his or her parents, become partners in the diagnostic and intervention process. Family-focused care is facilitated most productively through (a) frank communication between the family and the SLP, (b) respect for cultural differences and dynamics, and (c) respect for the family's autonomy and authority.
Culture and Cultural Identity
Everyone has a culture. Most people have multiple cultures. There is racial culture as well as ethnic culture, and other cultures related to gender, religion, age, physical size, socioeconomic status, physical ability, and others. Food preferences provide a good example of cultural differences between people who share the same racial identification but different ethnic heritage. African Americans whose ancestors came to America directly from Africa may have grown up eating different foods than African Americans whose ancestors are from Haiti. Other cultures can be determined by gender, age, socioeconomic level, educational level, or other attributes. We all possess several cultures through which we define ourselves and others react to us.
Culture can be defined as shared ideas, concepts, rules, and meanings that underlie and are expressed in the ways people live. Culture influences behavior and decision making. Cultures are developed in relation to the mores of the community in which a person is socialized. In most societies, to be outside of the nurturing community's culture is viewed as negative and malproductive (Paniagua, 1998).
Cultural identity is an anchor that ties an individual to a social community. We do know certain things about culture.
Frank Communication
The SLP's goal is to provide the child with dysphagia with the most complete and comprehensive dysphagia services. This goal is best and most easily achieved by securing the input, cooperation, and compliance of the parent(s). The SLP begins by developing a relationship with the parents that will allow the acquisition and exchange of information in order to make the best decisions for the child's care and rehabilitation. Good communication is the cornerstone of the relationship.
In the school setting, the child with dysphagia is likely to come to the SLP's attention via a referral from a teacher, pediatrician, or parent. The SLP will begin the diagnostic process by gathering information about the child and the issues that prompted the referral. The information gathering process will include reviewing the child's medical and educational records, interviewing the teacher, observing the child during meal times and at other times, and interviewing the child's parents. The initial meeting with the parents provides an excellent opportunity to begin relationship building. It will also be the time when the SLP will have an opportunity to get information about the child, the family, the family's culture, and the parents' perception of the child's dysphagia (and other issues), as well as the parents' desires for the child and their expectations of the intervention process.
SLPs who are unfamiliar with the family's culture may want to conduct an ethnographic interview. One of several benefits of this type of interview is that it allows the SLP to begin developing rapport with the parent (the interviewee) through the use of descriptive, carefully worded questions (Spradley, 1979). This type of interview allows the SLP to obtain pertinent background and diagnostic information and learn more about the family's culture. The ethnographic interview may also be less threatening for people of more traditional cultures who are not used to being interviewed by unfamiliar people. Rather than the SLP providing information to the parents, at this stage, the parents are encouraged to provide information to the SLP. In traditional interviews, the SLP conducts the interview from the perspective of what he or she wants to know. The ethnographic interview allows the parents to decide what important information they will share (Westby, Burda, & Metha, 2003). The information gained from the interview can be used throughout the entire diagnostic and therapeutic intervention process.
The success of the interview may be determined by how it is introduced to the informant(s). The SLP should begin by explaining that the purpose of the interview is to learn about the child and the family in an attempt to get information that will be used to help the child. The SLP can use a series of different types of questions to elicit the desired information. Descriptive questions such as those below can be used very effectively to garner information because they allow the informant to talk about what he or she considers most important:
The focus of the ethnographic interview is to get the parents' ideas in their own words. It is important to keep the parents talking to get information and insight into cultural and lifestyle patterns that might be important in the diagnostic and intervention processes. The chief purpose of the ethnographic interview is to have the parents talk about their life experiences. Carefully worded, open-ended (as opposed to closed-ended) questions should be used extensively to elicit information and conversation. Westby et al. (2003) provided a comprehensive overview of ethnographic interviewing, question structure, and effective use of the interview for eliciting information for diagnostic and intervention planning.
One of the SLP's most important responsibilities is to determine what the parents want for their child in the diagnostic and intervention process. How the parents view the child's oral motor, swallowing, and feeding challenges; what they want to be done about them; and what they want for their child's future is very important information. That should be some of the first information that the SLP obtains from the parents because not only do the questions provide vital information, but asking the questions communicates to the parents that the SLP knows that the family has a role in the intervention process. It also signals that the SLP values the parents' input and opinions. In most cultures, it is very important that the parents feel that their thoughts and desires are valued and considered. By conducting an ethnographic interview and soliciting the parents' input, the SLP sets the stage for a relationship with the parents. This approach helps secure the parents' trust and security with the diagnostic and intervention processes. Table 2 provides some guidelines for working with families from diverse backgrounds.
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Respect for Cultural Differences and Dynamics
A person's culture is always with them. It is the prism through which life and experiences are viewed. Although culture does not always determine behavior, it does provide an invaluable richness and texture to peoples' lives. Working successfully with families requires the SLP to understand and appreciate the qualities that make each child and family unique, special, and vital. The SLP must appreciate culture's contribution to these qualities.
Different cultures have diverse views about disability. How children and their families view the intervention process, the extent to which they are willing to seek therapy, and what they view as valid and desirable therapy may be influenced by their culture. Green (1982) noted that the Vietnamese culture takes a rather fatalistic view of disability. Individuals may feel that they have little ability to improve their fate and may focus on achieving harmony with the disability rather than attempting to overcome it. Some cultures place great value in traditional healers and nonpharmaceutical remedies.
Families' views about what causes illness and disability may influence their willingness to seek help or intervention (Lynch & Hanson, 2004). Their views may also influence their willingness to participate in intervention and rehabilitation programs or regimens. In some instances, even though individuals seek medical services, they may also simultaneously seek treatment from a traditional healer.
American health care and medical practices emphasize planned, organized intervention; regularly scheduled follow-up medical visits; consistent and correct use of medications; and practice specialization. This can require individuals with complex medical conditions to see several specialists who are in different locations. These are practices that may be unfamiliar to people from other cultures, or they may impose a hardship for people from other cultures. It may be necessary to explain certain processes and expectations to families who are unfamiliar with them.
Childrearing practices are also culturally determined. Feeding practices for young children can vary greatly among families. For some families, meals are highly structured, and mealtime is a time for everyone to sit down together and converse. In other families, there may be much less structure. Meals may be prepared and left for people to eat whatever they want whenever they desire. Or, in some families, adults and children may eat separately. In a family that eats together, a recommendation that a child be taken to a secluded place to eat with one parent in order to minimize environmental stimulation in an attempt to improve swallowing and feeding may meet with some opposition.
The SLP must strive to understand and appreciate cultural dynamics and differences. The SLP will have to develop strategies, interventions, and programs that are consistent with the family's desires, beliefs, and lifestyles. Much of this is achieved through communicating with families, asking the right questions, and including the parents in the decision-making process.
Respect for Family Authority and Autonomy
The SLP has considerable knowledge and expertise regarding oral motor, swallowing, and feeding disorders. However, the child's parents are the final authority on the child's care. If parents do not agree with the SLP's methods or recommendations, the parents' desires must be honored as long as they will not result in harm to the child. Parents who refuse dysphagia services or do not want their child tested or otherwise evaluated are within their rights to decline services.
Arab children are held in high esteem in their families. Arab families may seek medical care and rehabilitation services for their children. However, Arab families with traditional values may not be comfortable using services provided by non-Arabs. They may perceive social organizations as trying to replace traditional functions of the extended family (Wilson, 1996). In patriarchal families, the father may have the authority to decide what is in the best interests of all family members. If he prohibits his child's participation in therapy, it would probably be counterproductive and unwise for the SLP to try to persuade the mother to disregard her husband's opinion. Religious or cultural prohibitions may prevent a child from having an SLP of a particular gender. If the parents' wishes for a particular SLP cannot be accommodated, the child may not be able to receive therapy. In the Anglo European American culture, health and physical integrity are highly prized. However, in some cultures, other considerations may be more important. The SLP must respect families' wishes and desires for their children. If the SLP or other credible individuals cannot convince the parents that the SLP's recommendations are in the child's best interests, the parents' wishes should be respected and adhered to.
Culture and Health-Related Beliefs
We can illustrate how cultural values differ by discussing the beliefs that define various groups. Because culture shapes values and influences behavior, it is logical that culture would influence a person's perceptions of health and illness. A discussion of culturally determined health beliefs serves to illustrate how culture influences what people believe about health and health care practices. The following overview is not comprehensive. There is considerable variation within cultural groups, and one description of health-related beliefs cannot be descriptive of all people who share that culture.
Hispanics or Latinos are native Spanish-speaking and Spanish-descent individuals who live in America (Brice, 2002). Some may have been born in America; others may have been born in Central or South American countries, Mexico, Cuba, or Puerto Rico. The important cultural values for Latinos are kindness (simpatia), formal friendliness (personalismo), respect (respecto), loyalty to the nuclear and extended family (familismo), and fatalism (fatalismo) (Taylor & Willies-Jacobo, 2003). Many Hispanic American families use Western medicine; however, they may also subscribe to more traditional practices such as home remedies (remedies casero) or the use of folk healers (curanderos). Some Latinos believe that childhood illness is caused by three primary forces: hot–cold imbalance, drafts or winds, and undigested foods. Most foods, beverages, herbs, and medicines are classified as hot or cold and can be used to alleviate illness. Hot conditions such as rashes, fever, and ulcers are treated with cold foods such as fresh vegetables, fruits, and dairy products. Cold illnesses (earache, arthritis) are treated with hot foods or herbs and medicines (McCormack, 1987).
A study to investigate 100 Latino mothers' beliefs about their children's illnesses revealed that 80% of them believed that their children's coughs were caused by an imbalance between hot and cold forces. Approximately 36% of the mothers believed that their children's diarrhea was caused by something they ate, and 53% of them believed that conjunctivitis was caused by "an air," as in polluted air (Mikhail, 1994).
Some illnesses that are recognized by Latinos have no counterpart in Western medicine. For example, susto (fright) is an emotional illness that results from a traumatic experience (Ahumada-Monrroy, 1983). Symptoms include listlessness, loss of appetite, and withdrawal. A curandero (healer) would be consulted to treat this condition. Empacho is a blockage in the intestine that is believed to be caused by undigested food. This is not uncommon in children and includes nausea, vomiting, fever, and diarrhea. Mal de ojo or "evil eye" occurs when a person with "strong eyes" looks at a child but does not touch him. The symptoms include fever, crying, rashes, vomiting, and loss of appetite. The remedy may include having the person who caused the mal de ojo touch the child or passing an unbroken egg over the child's body and then putting the egg under the child's crib or bed to draw the fever out of his body (Ahumada-Monrroy, 1983).
Knowledge of the hot–cold imbalance concept or the notion of drafts or winds as causes of illness and disorders will be helpful to the SLP as he or she tries to explain a child's dysphagia to Hispanic or Latino parents who subscribe to such beliefs. If a parent questions the SLP about the origins of the child's dysphagia or suggests an imbalance, drafts, or undigested food as a possible cause of dysphagia, the SLP can respond with, "Another way to explain your son's swallowing difficulties is to say that his tongue and mouth muscles are weak. We are going to be working to make them stronger so he can chew and swallow his food more easily." This provides an easy-to-understand explanation without negating the parents' traditional beliefs.
African Americans are people of West and Central African descent whose ancestors were brought to North American via the slave trade. African Americans are as diverse as any other cultural group. Their health and wellness beliefs and regimens are influenced by their African heritage as well as their socioeconomic level, education, and religious beliefs. African Americans are susceptible to illnesses such as sickle cell anemia, hypertension, diabetes, and stroke. They are more likely than their Caucasian, Latino, or Asian counterparts to contract these diseases. This is due, in part, to their African genetic heritage, but also to lifestyle practices related to food preferences and social dynamics resulting from the stresses associated with discrimination and racism (Sowers, Ferdinand, Bakris, & Douglas, 2002). African American children are more likely to be born prematurely and to be lower birthweight than Caucasian infants (Leslie, Galvin, Diehl, Benett, & Buescher, 2003). African American children are vulnerable to illnesses related to poverty because 37% of African American children live in poverty (Martinez, 2000). African American children are also twice as likely as Caucasian children to have asthma and are four times as likely to be diagnosed with a learning disability (Root & Resnick, 2003).
Cultural healers are part of the tradition of African American health and wellness. There are three cultural healers who characterize the African American health ethic. The old lady is a person who is knowledgeable about herbs and natural remedies used to cure illness. The spiritualist (often a preacher) is one who has received the gift of healing from God. The spiritualist may practice the "laying on of hands" to restore health. The root doctor is believed to be skilled in supernatural remedies and can eradicate sicknesses caused by physical maladies as well as "spells" that have been put on a person by an enemy (Jordan, 1975).
Southeast Asians began immigrating to the United States in 1975 at the end of the Vietnam War. Since then, approximately 2 million Cambodians, Vietnamese, and Laotians have resettled in America (Grieco, 2004). Although the groups do share some similarities regarding interpersonal behaviors, health beliefs, and practices, they are also very distinct in their religious beliefs, languages, and lifestyles. The Hmong are the mountain people of Laos. They are culturally distinct in that they have had a written language only since 1954 (Lindsay, 1996).
In Southeast Asian culture, the head is the sacred part of the body, and the feet are the lowliest part of the body (Mattson, 1995). Therefore, casual touching of the head may not be acceptable, and pointing the feet toward another person may be considered offensive. The physical examination and touching that are part of pediatric dysphagia treatment require the SLP to provide a comprehensive and thorough explanation and demonstration for the client's parents before proceeding. Eye contact, especially with a person of superior status (e.g., physician, teacher, SLP), may be considered disrespectful. Therefore, for people of Southeast Asian descent, averting eye gaze may be considered proper behavior in a clinical situation. Also, many Southeast Asians feel that paying excessive attention to a baby brings negative spirits who might hear the praise and come and take the baby away.
Traditional Southeastern Asian culture ascribes illness to metaphysical, naturalistic, or supernatural causes (Lindsay, Narayan, & Rea, 1998). Southeast Asians believe that illness is caused by disruptions of balance and harmony. The imbalances are described as hot and cold but are not related to temperature, but rather to the properties that are associated with certain body parts, foods, and experiences. Southeast Asians also believe that illness can be caused by a shift in the balance of natural "forces" or "winds." They believe that a disruption of spiritual harmony caused by fright, extreme grief, or failure to pay proper homage to ancestors can result in disease and illness. Malicious spirits can also enter the body and cause harm. The remedy for this is to tie white yarn around a baby's wrist. Older children may wear copper or silver bracelets, necklaces, or anklets to "lock" the soul and prevent it from leaving the child (Lindsay et al., 1998).
All cultures have their folk remedies. Some Southeast Asian people use the principal of opposition to treat illnesses that are caused by balance disruptions. Hot illnesses are treated with remedies that have cold properties, and vice versa. Illnesses caused by winds may be treated by coining (rubbing the skin with coins or eggs), pinching the skin, or cupping (applying warm cups to the skin to create a vacuum). Some believe that such remedies draw the bad wind to the skin so that it can be eliminated (Mattson, 1995). All of these remedies can cause blood to appear under the skin, causing the skin to look bruised. Health care workers who are not aware of these practices may be alarmed at the sight of a child's skin after coining or cupping.
The dysphagia evaluation may be completely unfamiliar to Asian parents who hold traditional beliefs about health and illness. Knowing that the head is considered sacred should guide the SLP's actions and explanations to the parents during the dysphagia evaluation. Proceeding carefully and deliberately while providing clear explanations about what is being done, and the reasons for each action, may help parents better understand the evaluation process and outcomes. The concept of hot and cold illnesses and their appropriate remedies may have to be acknowledged and addressed by the SLP, especially if the parent raises the issue or asks questions about the appropriateness of the SLP's recommendations. If the parents object to the SLP's dietary recommendations, he or she should invite the parents' suggestions about appropriate foods and food combinations.
Asian Americans who were born in Japan or China or whose ancestors immigrated to America from there, or who themselves may have been born there, represent two other distinct cultural groups. Traditional Chinese medicine is based on the theory of yin and yang and the five elements (Fung, 1991). Yin (negative, feminine, weak, dark, cold) and yang (positive, masculine, strong, light, warm) are opposites. The concepts of yin and yang are applied to the body, its organs, and its functions. The yin organs are above the diaphragm. They are solid (Tsang) and include the heart, liver, spleen, lungs, kidneys, and adrenal glands. The yang organs are below the diaphragm. They are hollow (Fu) and include the stomach, gall bladder, bladder, and intestines. According to traditional Chinese beliefs, illness is caused by an imbalance between yin and yang. The theory of the five elements (wu hsing) codifies the relationships among the elements of wind, earth, fire, metal, and water with nature and the body's organ systems. The elements have the power to activate or be depressed by the forces of the other elements. It is believed that stimulation to specific sites on the body (acupoints) can activate an innate life energy called chi, which moves along medians (pathways) to augment or suppress internal organs.
The traditional Japanese health beliefs are rooted in the Shinto religion. According to Shinto, humans are inherently good, and illness is caused by evil spirits that punish people who have succumbed to temptation. Health is a matter of balance and harmony. Cleanliness is important because those who ascribe to Shinto beliefs think that illness can be caused by polluting agents. Health is achieved through a combination of balance, harmony, and cleanliness (Sato & Takano, 1983). Japanese traditional beliefs also incorporate acupuncture as a cure for illness. A traditional form of massage (Shiatsu) is also used to relieve pain and discomfort due to neuromuscular and other conditions.
An SLP who is asked to explain pediatric dysphagia as a yin yang imbalance may find him- or herself at a loss for words. An appropriate response might be "I am not very familiar with yin and yang, but your child's eating and swallowing problems are caused by an imbalance between what she needs to do in order to eat and swallow properly and what her body is able to do. We are going to be working to create the balance she needs to strengthen her eating and swallowing skills."
Native American is a term that describes approximately 4.3 million people (Ogunwole, 2006). They comprise 700 native groups, speak many different traditional languages, ascribe to many different cultures, and embrace various levels of acculturation (Robinson-Zañartu, 1996). Native Americans are among the poorest groups in America. Thirty-two percent of Native American families have incomes below the poverty threshold. High schools on Native American reservations have a 50% dropout rate (St. Germaine, 1995). Native American children are more likely to die due to birth defects than all other ethnic groups in America (Indian Health Service, 1996). Fetal alcohol syndrome and fetal alcohol affects (May, 1999), otitis media (Moore, 1999), and clefts of the lip and palate or both (Coddington & Hisnanick, 1996) are especially prevalent among Native American children. Among Native American adults, alcoholism, diabetes, and diabetes-related illnesses are especially high (Indian Health Service, 1998–1999).
Some Native American groups explain illness in relation to the four aspects of the medicine wheel: physical, mental, emotional, and spiritual. Illness is likely to occur when all aspects of the wheel are not in balance or harmony. Some Native American people believe that ancestors, natural events, and spirits help, teach, and protect their communities. Illness prevention and wellness are created through ceremonies that ensure harmony and balance (Westby & Vining, 2002). There are some Native American languages that do not have a word for disability, handicap, or rehabilitation. The traditional Native American belief is that failure to live in harmony with the environment and Mother Nature and Father Sky may result in illness and disability (Westby & Vining, 2002).
Middle Easterners and Arab Americans are members of ancient cultures, many of which share the religion of Islam and the Arabic language. People of Middle Eastern origin may subscribe to traditional medical practices such as cauterization (destroying abnormal tissue by burning or scarring with a hot instrument), herbal medicines, dietary treatments, chiropractic, and cupping (treatment in which glass cups are applied to the skin in order to draw blood toward or through the dermis). Traditional healers are common. A traditional healer may require discontinuation of all pharmaceutical medications before accepting a patient for treatment (Al-Shahri, 2002). Some patients may not disclose detailed information about themselves or their families, especially to strangers. Women may not want to talk about their private lives. However, they may feel more comfortable talking with female doctors (Purnell & Paulanka, 1998).
Some Iranians believe food can be classified into hot and cold categories and that people also can have hot and cold natures. Garmi (hot) food, they believe, thickens the blood and speeds the metabolism, whereas sardi (cold) food dilutes the blood and slows the metabolism. Dates, figs, and grapes are fruits with hot properties; plums, peaches, and oranges are fruits with cold properties (Batmangli, 1986). Some Iranians believe that dietary balance between hot and cold foods is essential for good health. Mothers use herbal remedies for children's illnesses and discomfort. Fig syrup and mint essence are used to soothe colic, and tea sweetened with rock sugar is used for a stomachache. Fruit juices are remedies for flu. Cooked turnips are used to combat upper respiratory congestion, and watermelon is used to combat chickenpox (Sharifzadeh, 2004).
Gay and lesbian bisexual and transgendered (GLBT) families are increasing now that some states allow same-sex couples and single GLBT adults to adopt children. Some states recognize civil unions between same-sex couples, and Massachusetts recognizes same-sex marriages. The homosexual orientation and lifestyle can be considered a culture.
There are several different forms of childrearing in the GLBT community: foster care, adoption, children from prior heterosexual relationships, artificial insemination, and coparenting by gay and lesbian couples or individuals. In some situations, one gay and one lesbian individual coparent (Kaiser Permanente National Diversity Council, 2004).
When working with same-sex parents, it is important to be aware of their distinct culture and lifestyles. A child who has lesbian or gay parents has two parents of the same sex: two mothers or two fathers. Questions such as "Which one of you is the mother" or "Which of you is the natural parent" are never appropriate. If both parents attend a meeting or an IEP session, they should both be addressed equally.
Case study. Sara is the SLP for the Houston Elementary School in Dearborn, MI. She did a dysphagia evaluation on Ibrahim, a third grader who is the child of Iranian immigrants. Ibrahim had a traumatic brain injury as the result of an automobile accident 6 months earlier. He had been hospitalized for 3 weeks after the accident and had been tube fed for 2 months. Sara's evaluation revealed poorly coordinated oral motor functions that resulted in poor tongue mobility and bolus manipulation in the oral cavity. Her dysphagia program included positioning during feeding to improve bolus transport and the introduction of pureed foods to facilitate more bolus control. Sara developed a list of foods that could be pureed in order to provide Ibrahim with a nutritional diet. She also developed several meal plans to share with his parents at the IEP meeting.
When Ibrahim's parents came to the IEP meeting, they expressed their appreciation for the team's work with their son and their efforts to provide special education and dysphagia services for him. However, when Sara described the foods that she wanted Ibrahim to eat, his father told her that he did not understand how she could make such recommendations for a child who had a disorder such as Ibrahim's. He said that she had provided menus that mixed hot and cold foods indiscriminately, and he was sure that would not benefit his son or remedy his dysphagia. Sara did not understand the father's references to hot and cold foods. She thought he meant food temperatures. When Sara realized that she had the wrong impression, she asked him to explain what he meant. He told her about the characteristics of hot and cold foods. He also told her that foods were chosen in relation to the body's needs and the individual who was eating them. Sara thanked him for his explanation. She explained that she had chosen the foods because they could be pureed easily to facilitate better bolus control and they were very nourishing. She asked Ibrahim's parents to review the list of foods and tell her which foods could be eaten together at a meal. Sara and the parents then revised the menus based on their input and guidance. They were pleased with the results.
Acculturation and Assimilation
Acculturation refers to acquiring the capability to function within the dominant culture while retaining important aspects of one's original culture. Assimilation occurs when one's original culture is subsumed by the dominant culture. In both cases, an individual is able to take on the ideals and beliefs of another culture and to function comfortably within that culture. Acculturation and assimilation appear to be related to factors such as one's socioeconomic level, facility with the dominant language, level of educational attainment, and access to the mainstream aspects of the second culture (Helms, 1994).
The health beliefs discussed earlier represent the tenants of some traditional cultures. Although members of each of the cultural groups may have learned and embraced those beliefs, their exposure to Anglo European American culture may have led them to embrace Anglo European American health ideals as well. Consequently, the extent to which people adhere to and continue to practice the health beliefs of their socializing culture may be related to the extent of their acculturation or assimilation into Anglo European American culture. For example, there are Latinos who do not ascribe to traditional health beliefs and Asian Americans who do not believe in yin and yang. Socioeconomic and educational level can influence health care preferences. Middle class people may want the most modern technology and remedies available; rural people may prefer holistic natural approaches to health and rehabilitation. The inner city poor may be hindered by limited access to health care and they may be medically underserved.
When providing dysphagia services to families from diverse cultures, it may be beneficial to determine what their health beliefs are. There are scales that can be used to determine the extent of one's acculturation. However, it may be even more productive to talk to the parents to learn about their health beliefs.
Case study. Benito is 3 years old and has fetal alcohol syndrome. He was in a public school early intervention program when John, the school SLP, saw him for a dysphagia evaluation. Benito was born prematurely. His parents were Native Americans. He was being raised by his maternal aunt. When John met with Benito's aunt, she told him that she had adopted Benito when he was 12 months old. She reported that he was bottle fed and progressed to cup drinking and semisolid foods relatively easily. However, he had difficulty eating solid foods. In fact, he clenched his jaws whenever solid food was placed to his lips. Benito had increased postural tone and limited upper extremity movement patterns that hampered his ability to use a controlled biting pattern. John met with Benito's aunt again after his evaluation. He demonstrated some positioning techniques that decreased Benito's hypertonicity and provided more movement freedom and more jaw mobility. Attempting to be culturally sensitive, John told Benito's aunt that he was aware that she might have some cultural beliefs that might lead her to have a fatalistic outlook on Benito's chances for improvement. He said that he hoped she would at least try the program he was recommending. Benito's aunt looked surprised. She said, "If I were fatalistic, I would not have enrolled Benito in this program. I want the best for him."
Cultural Competence
Campinha-Bacote (1994) developed a model for the culturally competent health care professional. The Process of Cultural Competence in the Delivery of Healthcare Services model defines cultural competence as the "process in which the healthcare professional continually strives to achieve the ability and availability to effectively work within the cultural context of the client" (p. 16). The model puts forth five components of cultural competence: cultural awareness, cultural knowledge, cultural skill, cultural encounters, and cultural desire. Cultural awareness requires an individual to assess his or her cultural beliefs and ideals as well as his or her biases toward other cultures. Cultural knowledge is the process of learning about other cultures and exploring other worldviews. It also includes becoming educated about biological diversity, illnesses, and other health conditions that affect different cultural and ethnic groups. Cultural skill is the ability to conduct a culturally based assessment and evaluation of the presenting problem and a cultural assessment to collect relevant cultural data regarding a client's presenting problem. Cultural encounters are the processes by which practitioners interact with people of other cultures in order to learn more about the culture and to prevent or eradicate stereotyping. Cultural desire is the motivation to become culturally aware, to acquire cultural knowledge and skill, and to initiate and embrace cultural desires. Cultural desire is the foundation for the cultural competence journey. Without this motivation, there is little incentive for the growth and movement necessary to become culturally competent. Cultural desire stimulates cultural competence.
In order to comply with the American Speech-Language-Hearing Association's (ASHA, 2003) Code of Ethics, the SLP must be culturally competent and knowledgeable about pediatric dysphagia. SLPs must be able to relate to and incorporate the client's and family's cultural and health beliefs into the services and intervention plan that they develop for the client.
Culturally Competent Care
Culturally competent care is care that is provided within a context that the child and the family understand and are comfortable with. Pediatric dysphagia evaluations, assessments, and therapeutic plans must be developed and implemented in such a way that the client and/or his or her family understand what is being done and why it is beneficial. The foundation of culturally competent care is productive communication between the family and the SLP. The SLP should know the family's health beliefs and how those beliefs might affect the family's perception of what he or she will recommend.
An SLP can gain insight into the child's or parents' health beliefs by asking several questions (Calgary Health Region, 2005):
The answers to these questions can provide a rich source of information about the family's perception of the child's oral motor, swallowing, or feeding issues. The answers can also provide an opportunity for further discussion about religious practices, family dynamics, service preferences, and information about dysphagia.
Even though people have different cultures and origins, some aspects of health care are universal to all cultures. Brislin (1993) reported on several investigations from around the world on health practices, people's expectations about health care, and healer–patient relationships. He concluded that there are six universal concepts in the delivery of health care:
In order to fulfill these universal expectations for competent health care, an SLP must be familiar with the client's health beliefs and his or her outcomes expectations. Familiarity with the family's culture and its belief system helps the SLP be more effective. It helps the SLP know what contexts can be used to explain diagnostic and evaluation information and how best to present that information. The knowledge also provides guidance on how to enlist the family's support for and agreement with the diagnostic and therapeutic plans.
Using Interpreters and Translators
Families who do not speak English or who have limited English skills may require a translator for meetings, interviews, and the IEP meeting. The translator should be familiar with the language and vocabulary of dysphagia, interview questions, and diagnostic and evaluation procedures. Parents' children should not be used as translators. In some cultures, it is improper for children to take on a role of responsibility for their parents. There may also be questions asked and information disclosed (during the interview) that are not appropriate for children to hear.
Interpreting and translating is a highly specialized skill that requires accurate and effective translation of information from one language to another. The translator's primary responsibility is to facilitate communication. The translator acts as a conduit between the SLP and the client and/or parents.
The best way to assess the need for an interpreter or translator is to assess the family's English skills. If the family is not able to use English to ask questions, carry on a conversation, or discuss the issues pertinent to the diagnosis and remediation of dysphasia, the SLP should use an interpreter or translator. Guidelines for working with interpreters and translators are provided in Table 3.
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Received April 3, 2006
Revision received December 5, 2006
Accepted July 23, 2007
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