Communing around meals is a prominent social feature of many cultures. However, the landscape of these social moments may change dramatically when a patient is diagnosed with dysphagia. It is important to consider the various differences in how mealtimes are represented across cultures when assessing and treating clients with dysphagia. Some facets discussed in this blogpost include access to familiar foods, ease of adjusting the texture and
consistencies of foods from various cultures, utensil preference, and many others.
Hello out there and welcome to this blog post! Here we will discuss a heavily faceted, multidimensional cross section of speech and language pathology: dysphagia and cultural and linguistic diversity. These are both big topics in our field! And require extensive research, education, and a little bit of personal soul searching in order to translate into good therapy services. However, before we get into the nexus of these two topics, let’s go over some of the basics of dysphagia and the scope of it’s impact.
Dysphagia is the broad medical term for swallowing disorders. In some cases dysphagia may improve with a variety of treatments and interventions. In others, it continues to progress further increasing the severity of the swallowing difficulty, risk of aspiration, and ultimately pneumonia. Dysphagia may also be present at one or multiple phases of the swallow, including oral, pharyngeal, esophageal, and gastroesophageal phases. As SLP’s we are predominantly expected to diagnose and treat dysphagia of the oral and pharyngeal phase, but should maintain an awareness of the impact and risks that esophageal and gastroesophageal
dysphasia present (most commonly acid reflux as an increased risk factor for aspiration and damage to the larynx and pharynx) (ASHA Practice Portal 2020, Riquelme 2004, Portland State University, 2020).
Dysphagia may result from a variety of neurological events/conditions such as stroke, dementias, ALS, TBI, head and neck cancer, COPD, etc., and developmental disabilities such as cerebral palsy, Down’s syndrome, etc (Portland State University, 2020). Given the scope of disorders that can cause swallowing difficulties, SLP’s should be prepared to encounter and
treat patients who have dysphagia in many treatment settings, ranging from acute medical settings to school based settings (ASHA Practice Portal 2020, Riquelme 2004, Portland State University, 2020). Even as a graduate student, I came across patients with dysphagia profiles from a variety of medical profiles. For instance, an older woman with dementia with a
predictable end game given her diagnosis. In contrast, an older man recovering from a stroke, with a strong effortful swallow and possibly the most intrinsic motivation I have ever witnessed. And most surprisingly, a woman in her mid-60s with no known cause or etiology whose progress was incremental and peppered by backslides. Swallowing difficulties can pop up in many profiles, so we must be prepared.
Swallowing difficulties can have a pervasive impact on a patient’s physical and mental health and well-being. Some symptoms of poorly managed or untreated dysphagia include choking, aspiration pneumonia, malnutrition, and dehydration. Concurrently, patients with dysphagia may see a social and emotional impact in avoidance or disinterest in eating/drinking, increased feeling of loneliness due to avoidance or isolation from social communing over meals, cultural disconnect from lack of participation in traditional meals such as religion events, seasonal dishes, holidays, and personal/familial milestones. This can increase feelings of loneliness, embarrassment, and frustration and may result in a negative relationship with the caregiver involved in managing a patient’s dysphagia, further impacting the social and emotional environment of the family (ASHA Practice Portal 2020, Riquelme 2004, Portland State University, 2020).
And here we find the nexus of these two topics! Dysphagia alone changes the cultural landscape of mealtimes and eating, however the degree of this effect varies given a patient’s cultural background. Determining the cultural significance around food and mealtimes should therefore be thought of as a critical component when completing a dysphagia assessment. One means to accomplish this is through ethnographic interviewing with the patient and their family. This should be coupled with the clinician’s own detailed research into the cultural specifics of a client’s background. Additionally, it might be helpful to reach out to other professionals who have experience working with specific cultural groups in order to gain insight and confirm the clinician’s exploratory findings. Critically, confirmation of cultural aspects of treatment with the client and family while developing and implementing treatment is of the utmost importance (ASHA Practice Portal 2020, Riquelme 2004, Portland State University, 2020).
Culturally Competent Assessment of Dysphagia
Before we even begin to consider tailoring treatment to our client’s specific cultural background and needs, we should consider the impact that our own culture might have on assessment and therapy. We should take stock of our own cultural assumptions and biases before conducting an assessment and treating clients with dysphagia (Piliavsky and Herrmann 2011, Dawson, Ballantyne, & Kenny 2015, Portland State University, 2020). Such assumptions and biases might include but are not limited to the following:
A patient and their family subscribes to the western medical approach to treatment of medical disorders and disabilities.
- As the professional our expert recommendations are higher on the list for consideration.
- Typical food used for initial evaluation and treatment progress are representative of a patient’s regular diet.
- Terms such as “pudding”, “nectar”, “puree”, etc. are understandable descriptors which can be easily correlated to foods typical of a patient’s diet and culture.
- Given education and instruction in safe swallowing techniques and treatment protocols, patients and/or their caregivers will institute and maintain diet restrictions.
- The utensils used to administer food for an evaluation or utilized to improve swallowing safety are culturally appropriate and/or preferred.
- Patients are willing to give up preferred or familiar foods in order to maintain swallowing safety.
When developing ethnographic interview questions and subsequent treatment plans consider frequent self-check-ins to reduce the impact of cultural biases and assumptions (Piliavsky and Herrmann 2011, Dawson, Ballantyne, & Kenny 2015, Portland State University, 2020). Considerations include but are not limited to the following:
- Your own personal mealtime structure and how this might differ for other cultures (time of day, number of meals, utensil preferences, etc.)
- Your interpretation of quality of life for yourself and others
- Your level of independence for a healthy person not impacted by dysphagia, vs the estimated achievable level of independence for your patients
- Your patience perception of independence and whether or not this is represented in your intervention plan
- What if any other intervention your patient is receiving for their dysphagia
- Variance in patient food preferences
- The adaptability of culturally specific food to modified diet textures
- The patient’s understanding or designated cause of their dysphagia
- The overall social impact of food in their culture (i.e. going out to eat for socialization, religious celebrations, generational expectations, and other cultural components)
Another component of assessment is the potential use of instrumental examinations in order to provide the most complete clinical profile of a patient’s dysphagia severity and to explore the effectiveness of compensatory strategies for increased safe swallowing. In these cases it is important to consider the patient’s diagnosis/current progression of their disease as well as the full and complete understanding of procedures by the patient and/or their families (Levy, Dominguez-Gasson, Brown, & Frederick 2004). In many cases with a degenerative disease or terminal illness profile, administration of an instrumental exam would be unethical and an unnecessary, potentially traumatic experience for a patient to endure.
Culturally Competent Treatment of Dysphagia
While restoring healthy and safe swallowing function is our primary goal for our dysphagia patients, it is not always a realistic prognosis for certain cases such as those of progressively degenerative or terminal diseases. Degenerative diseases such as dementia, Parkinson’s, Huntingtons, etc. are all examples of case profiles where intervention to restore swallowing function may not be the ethical course of action following a certain degree of client decline. At this point SLP’s must consider the efficacy and ethics of the next steps in treatment, whether or not to recommend alternative hydration and nutrition (AHN) via a feeding tube. Cultural differences regarding the use of AHN should be discussed at length in order for the patient and/or their family to make the most informed decision so as not to increase patient or familial suffering (Levy et al., 2004).
Another component of this conversation is the patient’s right to eat and drink if the patient wants to eat and drink. Many of our client’s will be receiving end of life care and will frequently have little control over any decisions of their life. Eating and drinking is frequently one of the last “choices” they have left. In my outplacement at a skilled nursing facility (spring 2020) patient’s diagnosed with dysphagia and a dementia profile were given the right to eat and drink as they preferred. This required family member counseling as well as education and coordination with the nursing staff in order to maintain a consistent and vigilant monitoring protocol for these patients. Implementation of this type of therapy protocol increases a patient quality of life at the end of their life and allows the patient and family to maintain a level of control in the therapy plan which is consistent with their cultural background.
In the event that dysphagia intervention is appropriate, some cultural differences may continue to present as barriers to effective intervention. Clinician understanding and reiteration of a patient’s cultural preferences regarding intervention should be established and utilized in developing a treatment protocol. Similarly, education and confirmation of patient and/or caregiver understanding of their diagnosis, intervention plan, and potential diet modification should be assessed frequently (Portland State University 2020, Levy et al. 2004). Some cultural barriers that you may encounter include but are not limited to the following:
- A variety of cultural differences between the patient and clinician
- Difficulty adapting preferred foods to modified textures and consistencies, or increased difficulty acquiring culturally familiar food in general
- Non-standardized labels in labeling acceptable textures and consistencies after diet modification as well as possible translation differences
- Inability to utilize preferred utensils for safe swallowing
- Alterations to food appearance, consistency, taste, and smell
Suggestions and Resources for SLPs
In the ultimate scheme of things, we need to do right by our clients. This encompasses providing evidence based, culturally competent therapy that incorporates the client’s and/or their families goals and wishes (ASHA Practice Portal 2020, Portland State University 2020). Below are some cultural baselines to consider when approaching each case with culturally sensitive clinical competence and objectivity.
- Utilize a wide cultural lens. There are many things that set each human experience apart from another, such as rural vs urban childhoods, age, race, gender, etc. Thinking broadly about culture will help you to understand and empathize more with your client’s overall.
- Check in frequently for client and caregiver understanding as well as making sure their wants and needs are being met. Hearing the situation from their perspective is invaluable and can help build a strong therapeutic alliance early on.
- Your most powerful tool for overcoming many cultural barriers could be to model the technique that you are targeting. “Less talking, more doing” – possibly the most helpful mantra I learned in graduate school.
- Consider differences in familial roles, independence, and freedoms in various cultures and how your therapy recommendations might conflict or impact these cultural variations.
Adult Dysphagia. (n.d.). Retrieved from https://www.asha.org/Practice-Portal/Clinical-Topics/Adult-Dysphagia/
“Cultural Considerations in Dysphagia Treatment.” Portland State University, http://www.pdx.edu/multicultural-topics-communication-sciences-disorders/cultural-considerations-in-d ysphagia-treatment.
Dawson, A., Ballantyne, A., & Kenny, B. (2015). Food culture, preferences and ethics in dysphagia management: food culture, preferences and ethics in dysphagia management. Bioethics, 29(9), 646–652. https://doi.org/10.1111/bioe.12189
Levy, A., Dominguez-Gasson, L., Brown, E., & Frederick, C. (2004). Managing dysphagia in the adult approaching end of life: technology at end of life questioned. The Asha Leader, 9(13), 1–17. https://doi.org/10.1044/leader.FTR1.09132004.1
Riquelme, L. F. (2004). Cultural competence in dysphagia. The Asha Leader, 9(7), 8–22. https://doi.org/10.1044/leader.FTR5.09072004.8
Piliavsky S., Herrmann D., ASHA 2011. Cultural Competence and Dysphagia: Improving Quality of Life. Retrieved from file:///C:/Users/seibe/Downloads/Piliavsky-Herrmann%20(1).pdf
About the Author
Catherine Seibert is a graduate student in the department of Hearing and Speech Sciences at the University of Maryland. She is a member of the Cultural-Linguistic Diversity Emphasis Program (CLD-EP), a Michigan native, and an avid coffee mug collector. Her clinical interests include the impact of acquired and progressive neurological disorders across the lifespan.