Cultural Considerations for Dysphagia Treatment

Definition of Dysphagia

Dysphagia is a medical term used to describe difficulty swallowing. It can result from changes in muscle movement, strength, and/or sensation and can range in severity. Dysphagia can be progressive, or it can improve over a period of time. Dysphagia may manifest as any or all of the following: food spilling out of the mouth while chewing, prolonged and/or disorganized chewing, food leftover in the mouth after swallowing, a delay in triggering the swallow, coughing, choking, a “wet” sounding voice when eating resulting from food/liquid going towards the airway, and regurgitation (oral or nasal).

Common Disorders Associated with Dysphagia in Adults

Research demonstrates that individuals who have dysphagia typically have neurological conditions (i.e. stroke, Parkinson’s Disease, Alzheimer’s Disease, Amyotrophic Lateral Sclerosis), developmental disabilities (i.e. Cerebral Palsy, Down Syndrome), traumatic brain injury, head and neck cancer, or other medical and surgical conditions (i.e. congestive heart failure, chronic obstructive pulmonary disease). Patients may also have dysphagia of an unknown etiology due to muscle weakness and potential changes in cognition.

Medical Model of Treatment

Western culture approaches treatment through a medical model that makes implicit assumptions that disability is a physical and individual phenomenon that is chronic and requires “fixing.” Not all cultures view disease through this model. Some cultures, such as within Vietnam and Mexico, view disease as a spiritual and group phenomenon that is time-limited and must be accepted. Differing views can cause miscommunications in the diagnosis and treatment of dysphagia.

General Assumptions SLPs Bring to Diagnosis and Treatment

These vary among individuals

• SLPs are the experts in dysphagia. Thus, their word holds more weight.

• SLPs may assume that an informal presentation creates an atmosphere of open dialogue with the patient and their families. However, the patient’s culture may influence how they view the power dynamic between the SLP and themselves. This can change how the patient interacts and how comfortable they are sharing information or asking questions to the SLP and other medical professionals.

• The foods used in clinical evaluation and treatment resemble the patient's typical food preferences.

• Patients and their families will understand and follow diet texture changes.

• Patients will give up foods they are familiar with and enjoy to be able to swallow safely.

• Patients will understand texture descriptions like "pudding," "nectar," "puree" and be able to apply them to their own cultural foods.

• That people prefer to eat with a spoon or fork and drink with a straw.

Common Barriers in Treatment of Dysphagia With a Multicultural Population

• Cultural differences between patient and healthcare provider

• Lack of access to familiar foods or inability to adapt familiar foods to the required consistency

• Differences in vocabulary and naming of foods and textures (i.e. different interpretations of “custard”)

• Changes in look and consistency of food

• Changes in smell and taste

• Patient being uncomfortable or unfamiliar with using certain utensils for eating (i.e. fork vs. hand vs. chopsticks)

Questions to Explore for Self-Evaluation of Personal Cultural Biases and Beliefs

1. How do I define quality of life for myself?

2. How do I define quality of life for others?

3. How do I view independence in tasks of daily living for myself?

4. How do I view independence in relation to the long-term goals for patients?

5. Do I consider my patient’s views of independence? How often?

6. How do I value eating and its impact socially, emotionally, and nutritionally?

7. How would I feel if I could no longer eat, or my ability to eat was compromised? How would this impact my everyday life?

8. What biases and stereotypes do I have around specific foods and mealtimes?

9. What biases and stereotypes do I have about specific cultural groups?

Questions for Patients and Their Families to Determine Cultural Beliefs

1. Inquire about groups they identify with (cultural, spiritual, generational, other).

2. What other medical or traditional healing treatment and/or advice are you receiving?

3. What are your food preferences? What do you typically eat during the day?

4. How do you view your illness and subsequent swallowing difficulties?

5. What do you attribute to the cause of your swallowing difficulties?

6. When do you typically eat meals?

7. What meals do you typically eat?

8. Who do you typically eat with?

9. Which of your typical social activities involve food (i.e. eating out, visiting others, outings)?

Mainstream American Culture

Brief Overview of Culture

Mainstream American culture has been shaped by Western culture, stemming mainly from the traditions of European immigrants. Other cultures, such as those brought by slaves from Africa, have influenced and built upon these traditions and beliefs. Increased immigration over the last 50 years by Asians and Latin American immigrants has further influenced mainstream American culture. Protestant British colonists established a core American culture that was further shaped by the movement to the Western Frontier. Americans have traditionally been characterized by a strong work ethic and value competitiveness, individualism, liberty, and equality. Additionally, Americans value independence, individuals' ability to choose, free will, and social mobility. They believe that science can conquer disease and prefer surgical and pharmacological interventions to other methods of treatment.

Potential Cultural Conflicts with American Healthcare

Medical professionals tend to value Western medicine over alternative methods of treatment (i.e. acupuncture, naturopathic medicine). Western medicine views disease as something to be cured, while other cultures may view them with acceptance. There may be misunderstandings in the implementation of the recommended treatment. For example, some may view nothing by mouth (NPO) as cruel and directly conflicting with the healing process.

Relationship with Food

Within the United States, food is a growing industry, and “foodie” is a term thrown around often within mainstream culture. People are experimenting with food and enjoying the experience of making and eating food more commonly. Personal identity and food are becoming more entwined. This can be seen in the growing “artisanal” cooking trend and the growing popularity of cooking competitions and shows. Food is an expression of self and culture. Many families have traditional dishes that are passed from generation to generation, influenced by both family and regional cultures. For some families, food can be an expression of caring and connecting. Dysphagia patients may experience grief around changes in eating, loss of appetite, and lack of interest in food. Grief may take the form of loss of social connection, as many activities may involve food, and may create conflict within a family if the main avenue of caring for someone is through food.

Typical Diet

This may vary by region

Americans typically eat three meals a day: breakfast, lunch, and dinner. Snacking throughout the day and dessert can also be standard. Breakfast can include but is not limited to cereal, oatmeal, bread, yogurt, fruit, eggs, bacon, sausages, and pancakes. Lunch is usually eaten on the go or in between work obligations. Typical lunch foods are sandwiches (usually meat-based), hamburgers, salads, pasta, and soup. Dinner is either cooked at home, purchased at a Deli counter, or eaten out. Typical dinner foods include meat (chicken, beef, turkey), vegetables, pasta dishes (macaroni and cheese, pasta with marinara or alfredo sauce), salad, rice dishes, potato dishes, and pizza.

Menu Ideas

Definitions will vary with facility, please refer to your facility’s diet texture policy

• Liquids (thin, may be thickened as needed): juices, milk, water, clear broth soups with no additional solids, soft drinks, coffee, tea

• Purees (pureed, homogenous, and cohesive foods; should be pudding-like with no coarse textures): thick fruit smoothie, yogurt, cream of wheat, creamy soups

• Mechanical soft (moist, soft-textured foods with some cohesion): scrambled eggs, oatmeal, pancakes with syrup, mashed potatoes with gravy, macaroni and cheese, ground meat

• Regular (patient’s normal diet with no restrictions): raw fruits and vegetables, rice, meats, bread, crunchy foods

Russian Culture

Brief Overview of Culture

Russian, officially known as the Russian Federation, is the largest country in the world. Ethnic Russians make up about 81% of the country’s population. However, it also has 160 other ethnic and indigenous groups. The main language is Russian, which is spoken throughout the country. There are about 100 other languages spoken within Russia by other ethnic groups. The traditional religions within Russia are Orthodox Christianity, Judaism, Buddhism, and Islam. Russians are very proud of their culture and achievements in music, art, literature, and dance.

Potential Cultural Conflicts with American Healthcare

Russia is currently the world leader in smoking. The normalcy of smoking may be an issue if the patient has cancer or another illness related to smoking. Alcohol consumption is an accepted part of Russian culture. Alcoholism has historically been problematic within the country as many view it as socially acceptable behavior. Many customs in Russia revolve around alcohol consumption. It is estimated that Russians consume 26 pints of pure alcohol per person each year.

Russian families are traditionally hierarchical, and decisions are made by the eldest in the family. The hierarchy is typically structured with the father on top, followed by mother, eldest son, then eldest daughter. Generally, when a person is ill, women are viewed as the caregiver and nurturers. Many Russians believe that a person can maintain good health by dressing warmly, avoiding stress and negative social situations, and maintaining good nutrition. If someone is ill, folk medicine is often used as well as traditional western medicine. They may also view good health as not being in pain. Often they may not seek healthcare unless they are experiencing physical pain. Some Russians may believe that disability is caused by something that the person has not done right in their life. Mental illness has a very negative connotation within the culture. Historically, Russia has institutionalized people with disabilities. This practice is slowly changing, but accessibility to services remains a major barrier in Russia.

Communication styles for Russians and Americans are very similar. Handshakes and direct eye contact are acceptable. Russians tend to be direct and straightforward in their conversation. Communication is dictated by relationships. For example, in business, the personal relationship takes precedence over the business relationship. The elderly are given great respect and may be referred to as 'aunt' or 'uncle' even if they are unrelated. Doctors are often viewed as the ultimate authority. However, due to Russia's complex history, some may view doctors suspiciously. Some families may prefer to shield the patient from bad medical news as they believe it may worsen the condition. It is important to keep in mind that each Russian family communicates differently.

Relationship with Food

Russians have a great love of food. Culturally, they are great hosts and love entertaining guests in their homes. They will set out more food for guests than can be eaten. Often, guests will leave some food on their plates to honor their host. This is a sign that the guest has eaten well at the host's home. Dinner may often be a large social event that can last late into the evening. Guests are often expected to socialize after the meal. Generally, declining offers of food or drink is considered rude. Alcohol consumption is an accepted and important part of the culture. In social situations, drinking alcohol can be an all-or-nothing affair. When visiting someone's home, it is rude to come empty-handed. Guests usually bring food or wine to the host. Food is a significant part of Russian culture and is an important part of their everyday interactions with others.

Typical Diet

This may vary by region

Russian cuisine is very diverse. Generally, three meals, breakfast, lunch, and dinner, are eaten daily. The Russian diet is influenced by the ingredients available in the region and by the many ethnic groups that make up its population. The diet is also influenced by the cold climate. Russians tend to eat vegetables and grains that grow well in this climate. Some vegetables that are the foundation of the diet include cabbage, onion, carrots, potatoes, turnips, and beets. Grains consist of buckwheat, barley, rye, and wheat. Fresh fruits and vegetables are not eaten as often as they are not as easily attainable. Vegetables are often eaten pickled or marinated. Potatoes and bread are a staple part of the Russian diet. Traditional dishes consist of roasted meats, fish, soups, stews, and bread. Russians also eat various dairy products, including tvorog, a kind of cottage cheese; ryazhenka, a slightly soured milk; sour cream; and hard and soft cheeses.

Menu Ideas

Definitions will vary with facility, please refer to your facility’s diet texture policy

• Liquids (thin, may be thickened as needed): tea, coffee, kefir, kvass (fermented bread beverage made from black or regular rye bread), broth without chunks of meat or vegetable

• Purees (pureed, homogenous, and cohesive foods; should be pudding-like with no coarse textures): ryazhenka (a slightly soured milk, more yogurt consistency), yogurt, pureed soup, mashed potatoes

• Mechanical soft (moist soft-textured foods with some cohesion): Goulash or other stews with soft meats and vegetables, soft fish, tvorog (a cottage cheese), ice cream, pelmeni (dumpling)

• Regular (patient’s normal diet with no restrictions): kasha (cereal), fish, chicken, borscht (beet soup), blini (type of pancake), piroshki (stuffed fried bun)

Mexican Culture

Brief Overview of Culture

Within Mexico, there are many cultures. The country is divided culturally into northern, central, and south or south-eastern Mexico as well as into either mountainous or coastal areas. Across these cultures, Spanish is spoken by 95% of the population and is the national language. Catholicism is the dominant religion within the country. The Virgin of Guadalupe is one of the most important icons of national culture, demonstrating the pervasive nature of the Roman Catholic church in the national culture. She represents the national identity of blending European and Meso-American people and religions and is viewed as the "mother" of all Mexicans. Mexicans have a strong regional identity, which leads to an idea of many different Mexicos. However, a strong feeling of nationalism works to unify the citizens despite the regional identity. Mexico has a long history full of colonial and imperial rule. This history has worked to solidify and unify the country and to foster a solid sense of identity. The strong sense of nationalism can be summed up in the Mexican saying, "como Mexico, no hay dos" ("Mexico is second to none").

Potential Cultural Conflicts with American Healthcare

Health care practices within Mexican culture can often combine Western medicine and traditional health care practices, such as home remedies and folk healers. This combination can lead to the healthcare provider and the patient having differing ideas about what caused the disease (i.e. natural vs. supernatural causes). Religion is a strong influence, and the patient and their family may feel that God is the determining force in the outcome of their illness. This attitude can result in a more passive role on the part of the patient. The family and their caregiving can further reinforce the patient's passivity. The family may want to provide complete support for the patient in activities of daily living, not allowing the patient to have an active role in recovery.

Within Mexican culture, there are clear roles dictating who makes medical decisions. Traditionally, the mother determines when medical care is needed, and the male head of household then permits going to get medical care. Additionally, the oldest adult male is often the decision-maker regarding healthcare. However, important decisions often involve the whole family. This is especially important to remember when delivering bad news. The family may want to know the news before the patient to shield and protect them.

Conflicts in healthcare service can also include lack of access to healthcare resulting from prohibitive cost, location, immigration status, language, or lack of information about available healthcare.

Relationship with Food

Eating is a social event involving all family members. In most homes, especially in rural areas, cooking is done at home using local ingredients. Cooking is often seen as women's work, and girls were traditionally considered ready to marry when they were able to cook. Food is an integral part of all traditional celebrations. Meals and dishes prepared for these celebrations are elaborate and often very time-consuming. The creation of them is considered an investment in the maintenance of social relationships.

Typical Diet

This may vary by region

Corn makes up the foundation of the Mexican diet and has done so for thousands of years. It can be eaten fresh but is most often dried, treated with lime, and then ground into flour to make tortillas. Corn can also take the form of tamales, sopes, a hearty stew called pozole, and various drinks. Another main ingredient in the Mexican diet is chili peppers. These add distinctive flavors to almost every dish prepared. The way a sauce is spiced is often the defining characteristic of that dish. Beans are another ingredient that factors heavily into the diet. They can be found cooking on the stove in most homes and are often eaten at all meals. In addition, popular fruits and vegetables are tomatoes, tomatillos, squash, sweet potato, avocado, mango, pineapple, papaya, and nopales. Chicken and pork are the most common meats, though beef is also eaten. Seafood is most popular in the coastal regions.

There are traditionally three main meals a day and a snack in the later morning. Breakfast is the first meal of the day and consists of fruits, pastry, toast with jam, coffee/tea/juice. The late morning snack is usually a tortilla-based roll or a bread roll. The main meal of the day, "la comida", is eaten between 2pm and 4pm. This meal is four courses made up of a combination of soup, rice and beans, tortillas, fish, chicken, burritos, tacos, enchiladas, tamales, mole, flan, and dulce de leche. Dinner is a light meal eaten between 8pm and 9pm. This meal is composed of sweet rolls, coffee, and milk. However, due to acculturation and a differing work schedule, dinner items will likely be similar to listed lunch items in the United States.

Menu Ideas

Definitions will vary with facility, please refer to your facility’s diet texture policy

• Liquids (thin, may be thickened as needed): water, coffee, horchata (a milky drink made from rice, tiger nuts, or almonds), soft drinks, milk

• Purees (pureed, homogenous, and cohesive foods; should be pudding-like with no coarse textures): blended fruit drinks, flan, smooth porridges, avocado

• Mechanical soft (moist soft-textured foods with some cohesion): enchiladas, burritos with sauce, tamales with soft filling, beans, sweet potatoes, soft fish, mango, pineapple

• Regular (patient’s normal diet with no restrictions): tacos, tortillas, burritos, tamales, meats, salads, sweet rolls, pastries

Chinese Culture

Brief Overview of Culture

China, officially known as the People's Republic of China, has a population of 1.35 billion people, making it the most populous country in the world. People from China are also the largest group of Asians living in the United States. China consists of 22 provinces, five autonomous regions, four direct-controlled municipalities, and two mostly self-governing special administrative regions. China's government claims Taiwan as its 23rd province. China officially recognizes 56 different ethnic groups. The largest is the Han Chinese, who make up about 91% of the population. Other large ethnic groups within China include the Zhuang, Manchu, Uyghur, Hui, and Miao.

There are 292 different languages spoken in China. The official language is standard Chinese, which is a dialect of Mandarin. The autonomous regions of China have different official languages. For example, Hong Kong's official language is Cantonese. The Chinese government officially recognizes five religions which include Buddhism, Taoism, Islam, Protestantism, and Catholicism. Four major traditional religions and philosophies in China include Confucianism, Buddhism, Taoism, and ancestor worship. Many Chinese Americans also practice Christianity. Healthcare in China is generally a combination of Western-style medicine and Chinese traditional medicine.

Potential Cultural Conflicts with American Healthcare

Family is very important in Chinese culture and is viewed as the most important social and economic force. Family members tend to be very interdependent, and it is common for many generations to live together. The parents are the highest authority within the household. Most Chinese people believe that their role within both their family and extended family is very important. This viewpoint may cause conflict in Chinese and American people's understanding of independence in daily living. Also, some Chinese families may prefer to include or only use traditional Chinese medicine in their healthcare. It is always important to keep in mind that this may not be the case for every family.

In many areas of China, disability is viewed very differently than in the United States. In some regions of China, disability is viewed as punishment for wrongdoing in a past life or parental sin. This viewpoint can be seen in the language. The traditional word for disability is "canfei", which means handicap and useless. Another term used is "canji", which means handicap or illness. Mental health is viewed as being achievable through self-discipline, exercises of power, and avoiding morbid thoughts. Emotional problems are associated with having a weak character. For some, mental illness can be attributed to evil spirits or as spiritual punishment. Some believe that certain foods that should be avoided and emotional disturbance during pregnancy may produce a child with disabilities. Shame and guilt may be felt by the head of the family as well as the person with the disability. Many families fear the criticism and disgrace that is associated with the stigma of having a disability. Chinese culture tends to focus on the cause of the illness, while Western medicine focuses on the solution. This difference can create conflict if the family is not well-informed on the nature and/or cause of the disability. Generally, Chinese people tend to be more accepting of a disability that is acquired versus congenital.

Chinese and American style of communication differs significantly. Generally, Chinese people are less direct and explicit. They rely on non-verbal cues like gestures, facial expressions, and eye messages. It is important to keep in mind that Chinese people may interpret some non-verbal cues differently than Americans. For example, direct eye contact may be interpreted as a disrespectful intimidation tactic, and making direct eye contact with an older adult may be viewed as a threat or sign of disobedience. To an American, direct eye contact is regarded positively, and avoiding someone's eyes could be viewed suspiciously. One should address older patients as Mr. or Mrs. as it can be viewed as disrespectful to address an older person by their first name. If one is working with a patient who has parents or older family members involved in their care, it is important to give that member equal attention while discussing the patient's care. These communication styles may not apply to every family.

Relationship with Food

Chinese people have a long history of gastronomy, and food is an important part of their everyday culture. Traditionally, food is viewed as critical in helping to maintain the body's balance of yin (cold) and yang (hot). Imbalance within the body is believed to cause illness. Chinese people traditionally use food to treat illnesses and diseases. Eating certain foods when one is ill can be very important for families during treatment. In general, Yin foods include fruit, vegetables, cold liquids, and beer. Yang foods include meat, eggs, hot liquids, and oily and fried foods. When ill, the Chinese prefer to drink hot liquids as it is believed cold water shocks the body. People who have stomach problems or fever are advised to avoid cold liquids and foods.

Typical Diet

This may vary by region

China is a vast country with at least 11 unique types of cuisine. Across the varieties of food styles, a few staples recur; they are rice, noodles, soybeans, wheat, vegetables, ginger, garlic, scallion, and sesame oil. A typical meal has two components. The first, known as "main food," is typically rice, noodles, or mantou (steamed buns). The second is an accompanying dish of vegetables, fish, meat, or another item. In Northern China, noodles and steamed buns are the predominant part of the meal. In Southern China, rice is the predominant part of the meal. Soup is usually served with a meal. Traditionally, soup was served at the end of a meal to satiate the appetite. Nowadays, soup is typically often served at the beginning of a meal. All meals are eaten with chopsticks, except soups, which are eaten with a wide, flat-bottomed spoon.

Menu Ideas

Definitions will vary with facility, please refer to your facility’s diet texture policy

• Liquids (thin, may be thickened as needed): clear broth, tea, soy milk

• Purees (pureed, homogenous, and cohesive foods; should be pudding-like with no coarse textures): non-fried tofu, black sesame soup (blended), Chinese steamed eggs (custard-like)

• Mechanical soft (moist, soft-textured foods with some cohesion): steamed vegetables, over-cooked noodles, congee (rice porridge), pickled vegetables, dumplings, fish

• Regular (patient’s normal diet with no restrictions): rice, fried rice, noodles, vegetables, lap chang (pork sausage), wonton soup

Treatment and Evaluation for Dysphagia within a Multicultural Population

Be Creative

• Brainstorm alternative ways for family members, caregivers, and patients to demonstrate care that do not involve food (i.e. invite someone to look at photo album/memorabilia, watch a movie, chat, play a board game or cards, go outside to a park, go fishing, do wood-working together).

• Brainstorm ideas with patients and family members for non-food gifts to bring to hosts or loved ones.

Be Aware

• Have a dialogue with the patient using their own terminology to support understanding and education regarding dysphagia.

• Be aware that the patient may not automatically understand the terms you use (e.g. NPO, aspiration, diet modifications). Do not assume understanding.

• Provide ample means of understanding your recommendations (model, visual instructions, written instructions, patient and/or family member explain back to you).

• Be aware that your recommendations might not align with the cultural beliefs of the patient and their family.

• Be aware that the patient and their family may not always be able to process all that you are saying, or be ready to hear what you have to say.

• Be aware of how your recommendations will affect the patient’s participation in social and cultural traditions and events. Remember, we give recommendations, not hard and fast rules; ultimately, it is always the patient’s choice.

• Be aware of the emotional impact of not eating on the patient and their family (e.g. embarrassment, grief, loss of enjoyment of eating, etc.).

• Be mindful of how the family may view the ideology of the impairment and the impairment itself.

Anticipate Barriers and Challenges

• Consider how the patient and their family may view diet modifications. For example, purees may be considered baby food and a demeaning recommendation.

• Take into consideration the time and energy needed to implement compensatory strategies. Meals times may be longer and eating slower. The patient may feel self-conscious about using compensatory strategies in social situations.

• Consider the patient’s nutritional needs, safety, and food culture when making recommendations.

• Be aware that there may be certain cultural traditions about who eats when and with whom.

• Remember that the patient might not have family nearby to assist with treatment.

• The patient and family may not understand dysphagia, your recommendations, or the risks of eating.

• The patient and family might do an Internet search and determine that they know what is best and disregard your advice.

Remember, every individual and family is unique and they need to be treated as such!