Course Articles

Editor’s note: This text-based course is an edited transcript of the webinar, Supporting Neurodiverse Staff, Colleagues and Patients, presented by Gabrielle Davis, MPH, MA, RRT, RRT-ACCS, RRT-NPS, TTS, LPC, NCC, FAARC. 

It is recommended that you download the course handout to supplement this text format.

Learning Outcomes

• Recognize and support neurodivergent patients, while gaining a deeper understanding of neurodiversity and its implications in healthcare
• Identify and apply strategies to dismantle barriers that limit equitable access to care for neurodivergent individuals
• Discuss the skills to implement affirming and inclusive care practices, ensuring that neurodivergent patients receive respectful and equitable respiratory care

Why This Topic? Why Now?

I chose to present this topic for several reasons. About a year ago, I attended a national conference where an educator—a college professor—asked the presenter a question that has stayed with me ever since. While I do not recall the specific topic the presenter was discussing, the professor’s question stood out: “What do we do with students who have IEPs? Should they not be discouraged from working in healthcare? Should they even be allowed to care for patients?”

Hearing those words deeply angered me. The question implied that individuals with Individualized Education Programs (IEPs) or other accommodations were inherently unfit to pursue careers in healthcare. Unfortunately, it was the final question of the session, and although I raised my hand to respond, there was no time for me to speak. That moment stayed with me, fueling my decision to address this topic—not just out of frustration but because it is an issue that demands attention.

I am someone who has ADHD, a condition I was diagnosed with later in life. Despite the challenges it presents, I have been able to achieve incredible things in my career and personal life. The idea that someone’s need for accommodations or support automatically disqualifies them from providing exceptional patient care is unfair and untrue. It perpetuates harmful stereotypes and undermines the potential of countless capable individuals.

It is essential to challenge these misconceptions and remind others that success in healthcare—or any field—is not defined by the absence of challenges. People with IEPs, ADHD, mental health conditions, or other needs for assistance prove every day that they are not only capable but can thrive in their chosen professions. By acknowledging this, we create a more inclusive and supportive environment for everyone.

Community-Powered Presentation

This presentation is community-powered, meaning it was shaped by input from individuals with lived experience related to this topic. While literature and evidence-based research are invaluable, they often exclude the voices of people from minoritized groups—particularly those with certain conditions—due to longstanding mistrust, including medical mistrust. By incorporating insights from the community, this presentation highlights perspectives that might otherwise be overlooked.

One key idea to consider as we explore this topic is that diagnosis itself is a privilege—one that not everyone has access to. For example, I am 42 years old and was only diagnosed with ADHD in 2017. My diagnosis came not through seeking medical help but because a teacher in my mental health therapy program pulled me aside and raised the possibility. Despite having access to insurance and other resources throughout my life, no one had ever brought it up before. It took someone paying close attention to connect the dots.

When I received my diagnosis, everything about my past suddenly made sense—the difficulties I had focusing on one thing, my need for extra time to complete tasks, and my tendency to juggle multiple things at once. ADHD manifests in diverse ways, and having a diagnosis provides clarity. However, not everyone is fortunate enough to have the opportunity to gain that clarity, which underscores why diagnosis is a privilege.

Another critical point is that language and science are constantly evolving. It is essential to stay informed about how terms and concepts shift over time. For instance, ongoing discussions in the neurodiversity community address the distinction between “neurodivergent” and “neurodiversity.” Some individuals do not wish to be labeled “neurodivergent,” even if science might categorize them differently. In these cases, it is vital to honor the language someone uses to describe themselves. It is not our role to correct or challenge how a person chooses to identify.

Lastly, this presentation is an educational offering, not a formal training. I use the term “educational offering” intentionally, as training often implies completion or mastery. In past presentations, I have had participants ask, “When do I get my certificate?” CEUs are valuable—clearly, or I would not be here—but it is important to understand that this is not the final destination. Instead, consider this one step on a much longer educational journey.

Let’s Talk Terms!

Let’s begin by defining some key terms, starting with neurodiversity. I say a definition because if you search for the term online, you will find countless interpretations. The one I use most often, particularly when speaking to those new to the concept, is straightforward: neurodiversity refers to the natural diversity of human brains. It emphasizes that every brain is unique. Notably, this definition does not mention diagnoses, which is intentional.

This distinction is important because when people hear terms like neurodiversity or neurodivergent, their understanding often defaults to ADHD or autism. While these are prominent examples, they are only part of the broader neurodivergent spectrum. The term encompasses a wide range of conditions, including dyslexia, dyspraxia, Tourette’s syndrome, and even mental health conditions such as bipolar disorder or generalized anxiety disorder. Each of these conditions can manifest differently from person to person. For instance, with ADHD, one individual might struggle with maintaining focus, while another thrives on multitasking but struggles with hyperfocus or emotional regulation.

One important concept within neurodiversity is acquired neurodiversity, which refers to changes in the brain resulting from life experiences, particularly trauma. Research indicates that approximately 70% of Americans have experienced some form of trauma, which can leave lasting effects on the brain. A commonly recognized example is post-traumatic stress disorder (PTSD), often associated with combat veterans. However, trauma affects people in many other ways and can stem from everyday experiences such as accidents, abuse, or even chronic stress.

Let me share a personal story to illustrate this. When I was 17, I had my first car, a 1988 Cougar. One day, while driving to my grandmother’s house, I stopped at an intersection to turn left. I noticed the car in front of me had children playing in the backseat—this was 1999, and seatbelt usage was not as rigorously enforced. I smiled at their antics, but then I glanced in my rearview mirror and saw a car speeding toward me. My immediate reaction was to press both feet on the brake to avoid being pushed into the car ahead. The impact spun my car into the opposite lane, but thankfully, I was not seriously hurt. However, the experience left a deep impression. For years, I avoided using my rearview mirror, angling it downward to avoid looking into it. I relied solely on my side mirrors, a habit born from that single traumatic moment.

Years later, in 2014, I was T-boned by another driver who ran a red light. Again, I was not seriously injured, but the trauma compounded my anxiety around driving. Now, whenever a car merges into the lane next to mine on the freeway, I instinctively assume it will swerve into my lane. This has led to unnecessary swerving on my part, even when no real danger exists. These experiences have made driving an activity I dread, not because of the act itself but because of how my brain now processes potential threats.

Trauma does not just affect conscious memories—it can also leave subconscious imprints. For example, I once worked with a client who had a debilitating fear of dogs. When I asked if she had ever been bitten or chased, she could not recall any such incident. However, after speaking with her family, she discovered she had been bitten on the foot at eight months old. She had no memory of the event, but her body retained the fear. This demonstrates how trauma, even when not consciously remembered, can shape our behaviors and responses.

This brings us back to the term neurodivergent. It stands in contrast to neurotypical, a word that has sparked debate. Referring to someone as neurotypical implies there’s a “normal” brain, but as we know, “normal” is a subjective and often unhelpful concept. As the saying goes, “Normal is just a setting on a washing machine.” Every brain is different, and these differences make humanity diverse and innovative.

Language within the neurodiversity movement continues to evolve. For instance, some people prefer the term neuroexpansive over neurodivergent. A group of Black disabled women coined Neuroexpansive as a response to how neurodivergent has been weaponized against marginalized populations. It rejects the framing of neurodivergence as a deficit and highlights the expansive possibilities of diverse brain function. For example, people with ADHD might hear statements like, “You cannot be trusted with this task because you are too distracted,” or “We cannot hire you because you are not reliable.” These statements perpetuate ableism, and while discrimination is illegal, it still happens.

Other terms are more playful, like neurospicy or neurosassy. I love these terms and often use them to describe myself. They provide a lighthearted way to embrace one’s neurodivergent identity while challenging the stigma around it.

As language and science continue to evolve, it is important to stay informed. If you are in a leadership position in healthcare or any field, listen to your colleagues and staff. When you encounter new terminology, take the initiative to learn about it—Google is free, after all. Proactively understanding these terms fosters inclusivity and ensures that everyone feels seen and respected.

Potential Challenges: Students/Colleagues

• Pushing to ‘work faster/harder’ constantly
• Being late and scheduling (coming to work or completing work)
• Being narrow-focused in providing/receiving instructions
• Completing modules or writing/reading in a loud space or tons of commotion
• Forced to be a trainer although they never received training in the same role
• Insisting on eye contact
• Varying ways of ‘reporting’
• Using colloquialisms or ‘common’ phrases

One of the potential challenges in working with students or colleagues is the pressure to constantly work faster or harder—especially when expectations are not clearly communicated up front. For example, outside of the mental health care space, I once worked with grocers. During a discussion on neurodiversity, one of them asked, “What do I do if someone takes four hours to complete a task that should take two hours?” Naturally, my first question was, “Why should it take two hours?” After some back and forth, the answer was, “Because it always has.”

When I pressed further, I learned that no one had ever explicitly told the person how long the task should take or offered guidance on how to complete it efficiently. Instead, they were told to “work faster.” This highlights an important point: definitions and expectations vary from person to person. My version of “fast” might not match yours, so clarity is key.

This is especially important when onboarding students or new hires. For instance, if you are a program director or manager, you need to be specific about expectations right from the start. Job descriptions, for example, often use vague terms like “morning shift” or “night shift.” For someone like me, with experience in hospitals where a morning shift typically runs from 7:00 a.m. to 7:00 p.m., I might assume that is what you mean. What if your morning shift starts at 6:00 a.m.? To avoid confusion, provide precise details—write the exact start and end times.

Another area where specificity matters is task instructions. Most workplaces have established ways of doing things, but new hires will not automatically know them. Be open to explaining processes in detail and, when appropriate, asking for feedback: “Is there another way to approach this?” or “What do you think could work better?” Encouraging input not only fosters collaboration but can also lead to improved workflows.

The environment where people work and learn also plays a significant role. For example, I spent nearly two decades working in hospitals, from 2000 to 2017. Many of the mandatory modules—on topics like sexual harassment or fire safety—had to be completed in break rooms, often with conversations and other distractions in the background. For people who struggle with focus, this can be a huge barrier. Simple accommodations, like providing noise-canceling headphones or allowing people to complete modules at home, can make a big difference. Additionally, naming the challenge upfront—acknowledging that the environment might be loud and suggesting alternative quiet spaces like a library—shows consideration and inclusivity.

Another challenge arises when individuals are promoted into newly created roles without formal training. For example, when I worked, we did not always have specialized roles like respiratory therapy leads or specialists. Often, someone was promoted into a role that did not previously exist, meaning they had to define the position and its responsibilities as they went. This can be especially challenging when they are later tasked with training someone else in a role they essentially created from scratch. Offering support, mentorship, and clear guidance can help ease this transition.

Cultural and neurodiverse factors also need to be considered. For instance, some neurodiverse individuals may find maintaining eye contact difficult or uncomfortable. Additionally, cultural norms influence the appropriateness of eye contact. In some cultures, avoiding eye contact is a sign of respect, while in others, it may be interpreted differently. Rather than assuming constant eye contact is necessary, be flexible and open to different forms of communication.

Reporting styles are another area where variation is common. In my own experience, the way I gave reports evolved. When I was new to the field, my reports were lengthy and detailed—sometimes overly so. As I gained experience, my reports became shorter and more concise while still covering the essentials. That said, even experienced colleagues might prefer a longer, more detailed approach. Accepting these variations ensures that everyone’s communication style is respected.

Finally, be mindful of using colloquialisms or common phrases. While these expressions might feel natural to you, they may not be universally understood. For instance, during a recent presentation, I learned that some of the phrases I commonly use did not make sense to others in the room. This reminds us that language can be exclusionary if we’re not careful. When in doubt, take the time to clarify your meaning or avoid overly specific idioms altogether.

By fostering clear communication, offering accommodations, and remaining open to diverse ways of thinking and working, we can create environments where everyone—regardless of their background or neurodiversity—can thrive.

Common Colloquialisms

A few years ago, I encountered a phrase I had never heard before: from soup to nuts. I was attending a webinar, and the presenter casually mentioned it in her talk. Immediately, my brain fixated on the unfamiliar phrase, and I felt compelled to figure out what it meant. I paused my attention on the presentation and opened Google to research it. As I went down the rabbit hole of definitions and origins, I realized I had missed about ten minutes of the webinar content.

Once I discovered the meaning—from soup to nuts refers to a complete process from start to finish, like a meal that begins with soup and ends with nuts for dessert—I found myself distracted by another question: Who actually eats nuts for dessert? So, I dived even deeper into irrelevant research while the webinar continued without me.

This experience highlights an important point about language and the unintended effects of using idiomatic expressions that might not be universally understood. Phrases like these can confuse listeners, pull them out of the moment, and detract from the message you are trying to convey.

Let’s look at some other examples of commonly used expressions and the potential issues they pose:

1. “Pounded into my brain” or “Don’t throw me under the bus”
   • Taken literally, these phrases sound harsh or even violent. While most people understand them metaphorically, their intensity can still be jarring, especially for individuals unfamiliar with the idiomatic usage.
2. “Let’s call a spade a spade”
   • This phrase has a troubling history rooted in racism, specifically targeting Black people. For a long time, I used this phrase without knowing its origins. It was not until someone pointed it out to me that I learned about its racist undertones. That realization led me to remove it from my vocabulary.
3. “It’s crazy in here”
   • The word crazy has been weaponized against individuals with mental health conditions, often used to dismiss or belittle their experiences. For me, removing this word from my everyday language has been one of the most challenging adjustments. It is commonly used in American English, and replacing it takes conscious effort. Over time, I have started using alternatives like wild or chaotic, but the habit did not change overnight.

These examples illustrate how language, even when used innocently, can carry unintended connotations or create confusion. For some phrases, the issue lies in their violent or extreme imagery. For others, the problem stems from their historical or cultural baggage. Still others, like crazy, perpetuate stigmas that we may not even realize we’re reinforcing.

How to Approach Language More Thoughtfully

The key is to question everything. Many of us grew up hearing and using phrases without knowing their origins or implications. Taking the time to research and reflect on the language we use can help us communicate more inclusively and respectfully. For instance:

• Be mindful of context. Consider whether the phrases you use might confuse or alienate your audience. If there’s even a small chance, opt for clearer, more direct language.
• Educate yourself. If you encounter a new or unfamiliar phrase, take a moment to look up its origins. This can be eye-opening, as I learned with call a spade a spade.
• Replace problematic terms. As I did with crazy, find alternatives that convey your intended meaning without perpetuating harm or stigma.

Adapting your language is a gradual process, but it is a worthwhile effort that promotes understanding and inclusivity. By questioning what we say and making conscious choices about the words we use, we can ensure that our communication uplifts rather than alienates us.

Considerations: Training-Employees/Students

When it comes to employees and students, one key consideration is whether the training process is standardized across the board. Most organizations have protocols, policies, or procedures in place for training—somewhere, someone has written them down. However, when it comes time to implement that training, there’s often a disconnect. Trainers typically teach in two ways: the right way, as outlined in the procedure, and their way, which reflects their personal habits or preferences. While this might seem harmless, it can create inconsistencies and confusion for trainees.

Personalizing the Training Process

It is worth asking: Can we adapt training to better suit individual learning styles? For example, on a new employee’s first day, you could ask how they best learn—whether through hands-on practice, visual aids, or written instructions. While it might not always be possible to fully accommodate their preferences, simply asking the question has value. It not only demonstrates that their needs are being considered but also allows them to mentally prepare to adapt if necessary. Furthermore, it provides insight for future training processes, helping you refine methods for the next employee.

Are Trainers Equipped to Train?

An often-overlooked aspect of the training process is whether trainers themselves have been adequately prepared. Training is more than teaching someone how to perform a task—it’s an interpersonal skill. Effective trainers know how to:

• Make others feel welcomed and included. A sense of belonging can significantly impact a trainee’s confidence and willingness to learn.
• Ask meaningful questions. Questions that encourage reflection or clarify understanding are essential in fostering growth.
• Receive and incorporate feedback. Training is not a one-way street; it is a dialogue. Trainers should be open to adjusting their methods based on input from their trainees.

Unfortunately, many trainers are thrust into their roles without receiving any training on how to train. This oversight can lead to awkward interactions or, worse, a trainee feeling unwelcome or unsupported.

Advance Preparation for Trainers

Another frequent issue arises when trainers aren’t given advance notice of their role. Imagine walking into work and being assigned a trainee without any prior warning. This not only catches the trainer off guard but also risks creating a suboptimal learning experience for the trainee. To address this, consider the following:

• Notify trainers in advance. For example, if there’s a position open, inform the trainer ahead of time: “We’re hiring for this role, and you will be responsible for training the new hire.” This allows them to mentally prepare and, if necessary, review the procedures they’ll be teaching.
• Identify backup trainers. Have a designated backup who can step in if the primary trainer is unavailable. Notify both trainers during the hiring process so they’re ready to fulfill their roles when the time comes.
• Ensure trainers volunteer for the role. In healthcare, it is common for people to be “voluntold” to train. While this can fill immediate gaps, it misses the opportunity to engage individuals who are genuinely interested in or suited for the role. By actively seeking out volunteers, you create a pool of trainers who are motivated and prepared to teach.

The Right People in the Right Roles

While there are people who excel at training, it is equally important to recognize that not everyone is suited for the role. Some individuals lack the interpersonal skills or patience required to guide others effectively. On the other hand, there are often untapped individuals who would thrive in a training role if given the chance. Actively engaging staff members and encouraging interest in training can expand the pool of qualified trainers while avoiding burnout among the usual go-to individuals.

Considerations: Patients

Considerations for Patient Communication and Consent

Building trust and rapport with patients starts with asking for consent—even for seemingly small actions. For instance, when approaching a patient’s room, consider saying, “Hi, I’m knocking at the door and standing in the doorway. Is it okay if I come in?” This simple request immediately establishes respect for their personal space and autonomy, setting a positive tone for the interaction. Asking for consent in these moments reinforces the idea that the patient is an active participant in their care, not just a passive recipient.

Encouraging Understanding Without Questioning

When explaining information to a patient, it is helpful to shift from yes/no questions about understanding to open-ended or declarative statements that encourage engagement. Instead of asking, “Do you understand?” (which might elicit a hesitant or automatic “yes”), try saying:

• “Please stop me if you have questions or need clarification.”
• “Let me know if I’m going too fast, and I’ll slow down.”
• “If something is not clear, feel free to ask me now, or you can let your nurse know, and they can reach out to me later.”

These statements remove the pressure of admitting confusion while still inviting dialogue. They empower the patient to take control of their learning process, making the conversation feel more collaborative.

Requesting Consent for Accompanied Visits

If you are entering a patient’s room with others—such as a student or another healthcare professional—always ask for consent. For example:

• “Is it okay if I come in? I also have a student with me who’s observing today.”

This approach respects the patient’s right to control who is present during their care. It contrasts with statements like, “We’re here, and this is my student,” which assume consent and may make the patient feel overlooked or pressured. Requesting consent in these situations protects both the patient’s comfort and the student's learning environment.

Including Family Without Shifting Focus

Family involvement in care can be valuable, but it is critical not to shift the spotlight away from the patient. This is particularly important when working with individuals with autism or mental health conditions, as it is not uncommon for providers to direct communication toward family members instead of the patient. For example:

• Rather than asking a caregiver, “What do you think is going on?” address the patient directly: “How are you feeling today?” or “Can you tell me what’s been going on?”
• You can include family members with statements like, “Let’s make sure we’re all on the same page about the care plan,” while keeping the patient at the center of the conversation.

This ensures the patient feels seen and respected, regardless of their condition, while valuing the family’s input as a secondary perspective.

Repeating Information in Different Ways

Patients may not always process information the first time it is presented—especially in stressful or unfamiliar settings. To support understanding:

• Use varied phrasing when repeating information. For example, if explaining a treatment plan, you might say, “This medication will help with your pain,” and later add, “The goal of this medication is to make you more comfortable while we work on your recovery.”
• Check in periodically: “Is this making sense so far?” or “Would you like me to go over anything again?”
• Provide written instructions or visual aids when possible, so patients and their families have something to refer back to after the conversation.

Always prioritize asking for consent, even for small actions such as entering a room or bringing additional people, like students or other staff members, into the space. These seemingly minor gestures build trust, respect the patient’s autonomy, and set a positive tone for the interaction. When explaining information, shift from yes/no questions to open-ended or declarative statements that encourage questions and engagement. This approach fosters better understanding and empowers patients to participate in their care actively.

Ensure the patient remains the central focus of all interactions, even when family members are present. While family input can be valuable, directing communication primarily toward the patient reinforces their agency and dignity, regardless of their condition. Additionally, consider repeating information multiple times and in different ways. This helps reinforce understanding, especially in stressful or unfamiliar situations. Pair verbal explanations with written instructions or visual aids whenever possible, giving patients and families a resource to revisit later. By incorporating these strategies, healthcare professionals can strengthen rapport, enhance patient-centered care, and contribute to better outcomes.

Non-Verbal Cues

Recognizing and Responding to Nonverbal Cues

Effective communication goes beyond words; nonverbal cues play a critical role in understanding and connection. If someone is nonverbal or struggles to articulate their thoughts, it is important to adapt your approach. For example, if you notice signs of discomfort or confusion, avoid pointing it out directly with statements like, “It seems like you do not understand.” Instead, rephrase your explanation or present the information in a different way. This allows the individual to remain in the loop without feeling singled out or embarrassed.

Pay close attention to nonverbal cues, as they often indicate whether someone is engaged or disconnected. Signs that you may have lost their attention or created discomfort include:

• Body language: Crossed arms, shifting in place, leaning away, or creating physical distance are all indicators that the person is disengaged or uneasy.
• Facial expressions: Frowning, pursed lips, raised eyebrows, eye rolls, or a shaking head can signal confusion, disagreement, or discomfort.
• Gestures: Fidgeting, tapping, or other closed-off gestures (such as clenching hands in pockets) may indicate frustration or discomfort.
• Eye Contact: Avoiding or limiting eye contact (if eye contact existed previously) may indicate hesitation or discomfort. Eye contact is particularly telling if it changes suddenly—though remember that cultural norms around eye contact vary.
• Tone of voice: A person’s tone can shift dramatically if they’re disengaged. Clear, steady speech may give way to mumbling, quieter responses, or even silence.

Understanding Minimal Encouragers

Minimal encouragers are subtle but essential nonverbal cues that show someone you are listening and engaged. These might include nodding, maintaining eye contact, or offering brief verbal affirmations like “Uh-huh” or “I see.” When these encouragers disappear—or are absent from the beginning—it could indicate that the person feels unheard, unvalued, or disconnected.

Tailoring Your Response

If you notice any of these cues, it is crucial to adjust your approach to bring the person back into the conversation. Here are some strategies:

• Rephrase and revisit: If you suspect they did not understand something, restate it in a different way. Instead of saying, “Let me explain that differently because I think you did not get it,” try, “Here’s another way to think about it,” or “Let’s go over this again from another angle.”
• Acknowledge and invite feedback: If you are unsure whether they’re following along, invite them to share: “Am I covering everything you need?” or “Did I miss something important?” This approach fosters collaboration and ensures they feel heard.
• Pay attention to their listening style: Some individuals might demonstrate understanding by maintaining prolonged eye contact, which can feel intense for some. If this makes you uncomfortable, address it gently: “I want to make sure I’m explaining things clearly—let me know if I missed anything.” This shifts the focus back to the conversation and reassures them of your engagement.

The Importance of Adapting

Everyone interacts with communication differently, shaped by their experiences, culture, and comfort level. By remaining attentive to nonverbal cues, adjusting your communication style, and inviting dialogue, you can create a more inclusive and understanding environment. These small but intentional efforts help ensure that both parties feel connected, respected, and aligned.

Considerations: ADA

Other Considerations: The ADA and Neurodiversity

it is important to note that the Americans with Disabilities Act (ADA) has not been updated since 2008 to reflect a broader understanding of neurodiversity. This lack of modernization is deeply problematic because the current framework primarily focuses on physical disabilities or accommodations like additional time for tasks. Neurodivergent conditions, which may require less conventional accommodations, often fall into a gray area within the ADA’s guidelines.

When we talk about reasonable accommodations, the term itself can be contentious. What is considered "reasonable" if the accommodation is not explicitly addressed by the ADA? This gap creates ambiguity for both employees requesting support and employers attempting to provide it.

Accommodations That Benefit Everyone

An important point to recognize is that accommodations designed for neurodivergent individuals often end up benefiting others as well. For example, I recently worked with an organization where an employee requested adjustments for light sensitivity. While replacing the lighting was not feasible, the company provided inexpensive, reusable tinted glasses instead. These glasses cost less than $2 each and ended up being useful for more than just the original requester.

This principle of universal benefit extends to many accommodations. Consider automatic doors: they were initially designed to help individuals using wheelchairs, but they’ve proven helpful for countless others. Parents juggling strollers and young children, shoppers carrying heavy bags, and older adults who struggle to open heavy doors all benefit from this innovation.

The same can be said for elevators in hospitals. Before elevators, staircases were the only option, creating significant barriers for individuals with mobility challenges. Today, elevators are a standard feature in nearly every multi-story building, benefiting people of all abilities.

Shifting the Lens: Equity vs. Equality

When thinking about accommodations, it is essential to approach them through an equity lens rather than an equality lens. Equality implies providing the same resources to everyone, while equity focuses on giving people what they specifically need to succeed. For neurodivergent individuals, this might mean personalized solutions that acknowledge their unique challenges.

it is also critical to acknowledge that not all accommodations are feasible. There may be instances where you have to say, “I’m sorry, we are unable to provide that accommodation right now.” This does not mean you have failed—it’s a reality of balancing resources and logistics. In these situations, it is important to give yourself grace. You cannot solve every issue, and recognizing your limits is part of creating a sustainable and thoughtful approach to accommodations.

The ADA’s outdated framework for neurodiversity highlights the need for broader societal and organizational efforts to address the unique needs of neurodivergent individuals. While not all accommodations are possible, many—such as inexpensive solutions or universally beneficial changes—are both doable and impactful. By thinking creatively and approaching these issues with an equity mindset, we can create environments that not only support individuals but also benefit entire communities.

Tips to Support

Social Etiquette and Creating Inclusive Workplaces

Understanding and fostering social etiquette in the workplace and in educational settings is vital for building an inclusive environment. Throughout my career, I have worked in diverse locations, including Detroit, Illinois, and Idaho. Moving to Idaho, however, felt like stepping into a different country—it was entirely unfamiliar. One notable experience stands out from my time in the ICU there.

Every day at 3 p.m., all the respiratory therapists would seemingly disappear. For months, I could not figure out where they went. As the only person in my department who looked like me, I hesitated to ask non-job-related questions. Eventually, I discovered that everyone was taking a collective snack break. While this was a normal routine for them, no one had thought to inform me or include me. It was not malicious—it was simply overlooked because it was ingrained in their culture.

This experience taught me the importance of explicitly sharing workplace norms, especially with new employees or students. Overlooking these small yet impactful social customs can unintentionally alienate others. For someone else, this situation could have led to feelings of not being liked or welcomed. By fostering open communication about workplace and social etiquette, you help others feel included and valued.

Addressing Stigma and Creating Safer Spaces

Many individuals, particularly those with neurodiverse conditions, hesitate to disclose their needs due to stigma. it is not required for anyone to share such personal details, but creating a safer space—a term I prefer over “safe space,” as true safety can only be governed individually—can encourage openness.

In my current job, I work on a team of five, and it was the quickest I have ever felt comfortable sharing my needs. Usually, it takes me six to nine months to open up about having ADHD and how it impacts my work. With this team, I felt safe enough to share within weeks. Their response was simple yet effective: “Okay. What do you need? How can we help?”

I explained that I struggle with abbreviations on video calls and meetings and that taking notes while leading a meeting or attending a webinar is difficult for me. They accommodated me by providing a pre-existing list of common abbreviations and even sending me Zoom messages in real-time with explanations when new ones came up. These accommodations were easy for them to implement and immensely helpful for me. Importantly, these changes weren’t formalized under the ADA—they were born out of an environment where I felt supported enough to ask for what I needed.

Understanding Different Definitions of Safety

Safety is a deeply personal concept that varies for each individual. For example, when I moved from Chicago to Idaho, many people commented, “I bet you are glad to be out of there.” For me, however, Idaho did not feel like a safe space. Safety, to me, meant being in a familiar environment surrounded by people who understood and supported me. Others may define safety differently, especially neurodiverse individuals, who may feel safest near those who have previously offered them understanding and support.

Providing advance notice about changes can also create a sense of safety. Notifying staff about upcoming fire drills, construction, or changes to routine helps them prepare physically and mentally. In healthcare, where such notice is not always possible, providing logic behind changes can help. If someone understands why something is happening, they may be more likely to accept and adapt to it.

Avoiding Assumptions

It is important not to make assumptions about people’s needs or goals. For instance, while encouraging someone to apply for a leadership role might come from a good place, it may not align with their aspirations. Some people find fulfillment in their current roles and do not seek additional responsibilities, and that’s perfectly valid. Share your observations and let them decide; do not push them into something they’re not ready for.

Similarly, avoid assumptions about what accommodations someone might need. Instead, foster open communication and allow them to share their preferences. Even simple accommodations, like addressing light sensitivity with inexpensive glasses, can make a significant difference.

Avoiding Sarcasm and Euphemisms

Lastly, be mindful of how sarcasm and euphemisms might be interpreted, especially by neurodiverse individuals or those unfamiliar with certain cultural norms. Sarcasm, while a common communication style, can be confusing or even hurtful if taken literally. For example, phrases like “That’s just great” in a sarcastic tone might be misunderstood. While avoiding sarcasm entirely can be challenging—especially for those who use it frequently—adopting clearer, more direct language fosters better understanding and connection.

Creating inclusive environments requires attention to both overt and subtle dynamics. From sharing workplace norms to fostering safer spaces and avoiding assumptions, these efforts build trust, encourage participation, and promote equity. By considering the varied needs and experiences of colleagues, staff, and students, we can work toward a culture where everyone feels valued and supported.

Common Euphemisms

The Importance of Direct and Thoughtful Language

Language carries weight, and the phrases we use—even those that seem harmless or commonplace—can have unintended consequences. Being direct and mindful of the words we choose not only reduces confusion but also helps avoid causing unintended harm.

Direct Language vs. Euphemisms

When discussing sensitive topics, it is important to prioritize clarity. For example:

• “They passed away” vs. “They died.” While "passed away" is often used to soften the reality of death, being direct by saying “they died” leaves less room for misinterpretation.
• “He is between jobs” vs. “He is unemployed.” The phrase “between jobs” can obscure the reality of unemployment, which may unintentionally downplay someone's situation. Being straightforward acknowledges their experience without unnecessary ambiguity.
• “She is feeling under the weather” vs. “She is sick.” While phrases like "under the weather" are commonly understood, their literal interpretation can spark confusion. A 19-year-old once pointed out to me, “If you think about it, everything is under the weather.” Technically, they’re not wrong, but this example highlights how being direct avoids unnecessary misinterpretations.

Phrases with Harmful Histories

Many common expressions have origins or implications that can be hurtful or harmful. For instance:

• “I’m gassed.” This phrase, used to express exhaustion, was pointed out in one of my conversations as having ties to the Holocaust. While not everyone may associate the phrase with this context, it is worth considering its potential impact.
• “Gone a bit baddie” or “That’s bonkers.” These terms, like "crazy," have historically been used to marginalize or demean people with mental health challenges. Even when used casually, they can reinforce harmful stereotypes or stigmas.

Recognizing Puzzled Reactions

Sometimes, people’s body language or expressions can indicate confusion or discomfort with a phrase you have used. If you notice puzzled looks or hesitation, take the opportunity to clarify. For example:

• If someone looks confused after hearing “He is between jobs,” you can follow up with, “I mean, he’s currently unemployed.”
• If you use a phrase with negative connotations and notice a reaction, acknowledge it: “I realize that phrase might not be the best choice—let me explain more clearly.”

Avoiding Harmful Expressions

Even phrases spoken lightly can have lingering effects. Words like “baddie,” “crazy,” or “bonkers” may seem innocuous but can sit with someone far longer than you realize. These terms, often weaponized against people with mental health challenges, can perpetuate stigma. The goal is not to be perfect but to strive for sensitivity and thoughtfulness in our speech.

Practical Tips for Mindful Communication

1. Be direct when possible. Use clear and straightforward language, especially for sensitive topics. This minimizes confusion and ensures your message is understood as intended.
2. Reflect on the origins of phrases. Many idiomatic expressions have negative or harmful histories. While you may not know every origin, being open to learning and adapting your language is key.
3. Pay attention to reactions. If you notice someone looks puzzled or uncomfortable, take it as an opportunity to clarify or adjust your phrasing.
4. Avoid stigmatizing terms. Words like “crazy” or “baddie” might feel casual, but they carry harmful connotations. Replace them with neutral or descriptive alternatives whenever possible.
5. Acknowledge mistakes. If you use a problematic phrase and realize it later, address it openly. This demonstrates a willingness to learn and grow.

Communication Tips for Workplaces and Interviews

Effective communication is the cornerstone of a supportive and inclusive environment. Patience is a critical component, even in fast-paced settings like hospitals. While time may be limited, making the effort to provide clear, concise instructions can prevent confusion and errors. For example, instead of saying, “Check everyone’s oxygen,” be explicit: “Check everyone’s oxygen using the pulse oximeter and document the readings.” Even if it feels overly specific, clear communication helps ensure tasks are completed accurately.

Job descriptions should also reflect clarity and modern standards. Use precise details such as shift times instead of vague terms like morning shift or afternoon shift. If weekend work is required, specify whether it is “every other weekend” or “every third weekend.” Additionally, reevaluate outdated requirements. For example, including phrases like “must lift 50 pounds” in office-based or non-physical job descriptions is unnecessary. Updating these descriptions ensures they accurately reflect the role’s demands and avoids perpetuating irrelevant or exclusionary criteria.

In interviews, move away from archaic definitions of professionalism that emphasize attire over qualifications. Judging candidates based on their clothing, particularly when the job involves wearing uniforms like scrubs, is both outdated and unfair. Focus on their skills, experiences, and responses rather than their outfit. It is also essential to ensure equity and relevance in interview questions. Regularly review and update questions to ensure they’re inclusive, free from bias, and directly related to the job’s requirements.

Creating inclusive and thoughtful interviews involves several steps. In group interviews, ensure the panel is diverse, with representation across genders and other identities. Mispronouncing a candidate’s name can cause disengagement, so practice names in advance and confirm pronunciation during the interview by asking, “Do I have this right?” If not, take the time to learn and use the correct pronunciation moving forward. Normalize sharing your pronouns and asking candidates for theirs to set a respectful and inclusive tone. Provide an overview of the interview process upfront, such as, “We’ll spend 60 minutes together, and I have 12 questions for you.” This helps candidates feel prepared and reduces anxiety.

Encourage candidates to take their time answering questions by saying, “You do not need to respond immediately—feel free to take a moment to think.” This fosters a more thoughtful and confident exchange. Additionally, remind candidates they can take notes during the interview. This small but meaningful gesture can help them organize their thoughts and feel more in control of the process.

By prioritizing clear communication, modernizing outdated practices, and fostering inclusivity, workplaces and interviews can become more equitable and supportive. These changes benefit individuals by creating a welcoming environment and enhance the organization by promoting fairness and collaboration.

Tips for Interviewing

During most interviews, it is common for the interviewer to take notes, so why shouldn’t the interviewee be allowed to do the same? Encouraging candidates to take notes during the interview helps them process questions and organize their responses. Additionally, a best practice is to provide interview questions in advance. While this suggestion often receives pushback from leaders—who worry it gives candidates an unfair advantage—it’s worth considering the benefits. Sharing common questions, such as “Tell me about your strengths and weaknesses” or “Describe a time when you faced a challenge and how you handled it,” allows candidates to prepare and present their best selves. This is not about providing clinical or technical questions in advance, but rather creating an environment where candidates can thoughtfully showcase their qualifications. After all, in most jobs, employees rarely need to respond to situations with the immediacy required in interviews, so giving them time to prepare aligns more closely with real-world expectations.

Another valuable question to ask during an interview is, “What makes a workplace feel safe or unsafe for you?” While you may not be able to fully meet their vision of a safer workplace, their response can offer insights into their values and needs. This information is useful not only for evaluating the candidate but also for shaping future policies and practices—even if they are not ultimately hired. Encouraging thoughtful responses and creating a supportive interview process fosters mutual respect and allows both parties to engage meaningfully.

Tips for Sensory

Supporting individuals with sensory needs involves practical solutions that promote comfort and inclusivity. For sound sensitivity, offering a quiet break space can make a significant difference. When quiet spaces aren’t feasible, providing noise-canceling headphones is an effective alternative. These headphones do not have to be expensive brands like Bose or Beats; affordable, reusable options are widely available, and many can be wiped clean for hygiene purposes.

For movement-related needs, allowing the use of fidget toys and offering flexible seating options, even briefly, can help individuals self-regulate. Healthcare environments often limit choices for seating or movement, but creating a comfortable space in break rooms can provide some relief. For instance, having chairs of varying heights ensures everyone can find a seat that suits them. Encouraging brief moments for physical movement outside of task-related rushing can also be beneficial.

Tactile accommodations might include allowing modifications to work uniforms, such as adding felt to scrub necklines for those with skin sensitivities. Providing tactile items like fidget toys in break areas is another simple yet effective solution. Many professionals, including mental health therapists, use fidget toys during their workday, and these items can be easily stored in pockets for convenience.

Lighting is another key consideration. Offering blue light screen covers or glasses can alleviate light sensitivity. Some organizations have even created sensory kits that include noise-canceling headphones, fidget toys, and light-filtering glasses. These kits can be purchased pre-made or assembled in-house at a lower cost, making them accessible for various settings. Sensory bags are increasingly common in workplaces, hospitals, hotels, and even retail environments, where they may be offered upon request.

Encouraging employees and students to take their breaks rather than skipping them is essential, especially in demanding fields like healthcare. Breaks aren’t just a luxury; they’re necessary for maintaining mental and physical well-being. While it is common for healthcare workers to skip breaks out of concern for burdening their colleagues, organizations should emphasize the importance of rest and recovery.

Neurodiversity Affirming Practice

• Core Principles
  • Intersectionality
  • Respecting autonomy
  • Validating differences
  • Presuming competence
  • Reframing expectations
  • Promoting self-advocacy
  • Rejecting neuronormativity
  • Prioritizing lived experience
  • Nurturing positive self-identity
  • Adapting systems and environments
  • Honoring all forms of communication

Watch Your Words!

Mindful language use is crucial in creating inclusive environments. Avoid using terms with stigmatizing or harmful connotations, particularly those related to mental health. For example, phrases like “this weather is so bipolar” misuse a serious condition and can deeply harm individuals who live with it. Similarly, casual remarks like “I’m a little OCD” or “take your happy pills” trivialize conditions like OCD and depression, which can be life-altering and debilitating for many.

In professional settings, it is especially important to avoid derogatory or dismissive terms. For instance, calling someone “psycho” or referring to a patient as “crazy” is not only disrespectful but also perpetuates harmful stereotypes. Such language can alienate colleagues or patients who may have experienced these terms as weapons against them or their loved ones. Even when used casually or jokingly, phrases like “bat-blank crazy” or “stop acting so schizo” are deeply problematic, particularly in healthcare or educational settings where trust and professionalism are paramount.

When communicating about a patient, stick to objective, clinical terms found in their chart or your observations. Avoid making assumptions or using colloquial terms, as these can harm your relationships with both colleagues and patients. It is impossible to know everyone’s personal history or how they may react to certain words. While true "safe spaces" may not exist, we can govern our own actions by being mindful of our language and fostering a more inclusive environment.

By implementing sensory accommodations and adopting mindful language practices, workplaces and educational settings can foster inclusivity and support individuals with diverse needs. Small changes, such as providing sensory tools, updating outdated language, and avoiding stigmatizing phrases, can have a significant impact on creating a respectful and welcoming environment for all.

Neurodiversity-affirming practices are rooted in principles that align closely with the framework of disability justice. There are ten principles of disability justice, and while all are significant, a few stand out as particularly relevant to this work. If you are interested in learning more, the QR code provided leads to additional information about the ongoing fight for disability justice in America.

Intersectionality

One critical principle is intersectionality, which is about recognizing that people have multiple, overlapping identities that shape how they experience the world. For example, I’m not just a person with ADHD—I’m also Black, queer, a woman, and I live in a fat body. All these parts of who I am come together in ways that influence how I move through life. Sometimes, certain spaces might feel safe or comfortable because of one part of my identity, but not for others.

For instance, as a Black person, I might face racial biases in certain settings, and as someone with ADHD, I might also deal with misunderstandings about how I work or communicate. Add in being queer and a woman, and it can feel like there are a lot of different layers to navigate at once. Living in a fat body adds yet another layer, especially when it comes to assumptions people make or the way healthcare is approached. All these identities do not exist separately—they mix and interact in ways that make my experiences unique.

Understanding intersectionality means keeping in mind that no one is just one thing. It is about seeing the whole person and recognizing how their different identities shape their experiences. For neurodivergent people, this is especially important because their challenges and needs might look different depending on the other parts of who they are. For example, a Black neurodivergent person might face both the stigma of neurodivergence and the impact of systemic racism, which creates a very different experience from someone who does not have those same layers.

When we think about inclusion, it is important to make room for all these different identities and how they overlap. It is not about treating everyone the same—it is about really listening to people and understanding how their unique mix of identities impacts their lives. That way, we can create spaces that feel welcoming and supportive for everyone, not just one part of who they are.

Prioritizing Lived Experience

Another key principle is prioritizing lived experience, which means valuing the voices of people who live with neurodivergence. While academic research and literature can provide useful information, there’s nothing more authentic than hearing directly from those who experience it firsthand. People with lived experience offer insights that no textbook or study can fully capture because they’re speaking from their day-to-day realities—their successes, challenges, and everything in between.

Resources created by neurodivergent individuals are incredibly valuable because they come from a place of personal understanding. They reflect real needs, practical solutions, and the nuanced ways neurodivergence impacts life. For example, a neurodivergent person sharing how they manage sensory overload or communicate at work provides actionable advice that feels relatable and grounded in reality. Whenever possible, we should prioritize learning from these voices rather than relying only on external analysis or theories written by people who do not share the experience.

It is not about dismissing academic research—it’s about balancing it with the perspectives of those who live it every day. By centering lived experience, we get a more complete, human understanding of what neurodivergence means and how to better support individuals in meaningful ways.

Recognizing Wholeness

Recognizing Wholeness is another essential principle. Neurodiversity is just one piece of a person’s identity, and it is important not to define someone solely by that one characteristic. People are complex, with many layers to who they are—interests, skills, values, and other parts of their identity that make them unique.

Recognizing wholeness means seeing and valuing the complete person—not just one part of their identity. It is about creating spaces where people can show up as their authentic selves without feeling like they’re being reduced to a single narrative or stereotype.

Sustainability

Sustainability is not just about protecting the planet—it is also about supporting people. To truly advocate for neurodivergent individuals, we need to adopt practices that prioritize their long-term well-being. This means understanding how neurodivergence affects them and making thoughtful changes to minimize stress and negative impacts in our interactions and shared environments.

Sustaining people goes beyond just meeting basic needs; it is about creating conditions where they can genuinely thrive. For neurodivergent individuals, this might include offering accommodations, fostering inclusive spaces, and ensuring that environments are flexible and supportive. Whether providing sensory-friendly workspaces or being mindful of clear communication, these efforts help people feel valued and empowered, not just tolerated.

Sustainability for people means moving past a survival mindset—where individuals are simply “getting by”—and instead focusing on helping them flourish in every aspect of life, whether at work, school, or within the community. By investing in practices that support long-term growth and well-being, we create a culture that uplifts everyone.

Collective Access

Collective access is vital. This principle highlights the importance of creating environments that support a wide range of needs, including cognitive, visual, auditory, motor, and speech-related accommodations. The idea is that accessibility is not just an individual responsibility—it’s a shared effort that benefits everyone. By working together to remove barriers and create inclusive spaces, we ensure that everyone has the opportunity to participate fully and equitably.

Collective access goes beyond meeting minimum standards. It is about recognizing that accommodations often serve more than just the individuals who request them—they enhance the environment for entire communities. For example, providing cognitive supports like clear instructions or sensory-friendly tools can improve focus and comfort for everyone in a workspace or classroom. Similarly, ensuring visual and auditory accessibility can make events or materials easier to engage with for a wider audience.

By embracing collective access, we take a proactive approach to inclusion, building environments that reflect the diversity of those who inhabit them. It reminds us that equity and justice aren’t one-time goals but ongoing commitments that require us to listen, learn, and act. When we prioritize accessibility and inclusivity, we create spaces where everyone feels valued, supported, and able to contribute their full potential.

Collective Liberation

Collective Liberation emphasizes that supporting neurodivergent individuals is not only about helping a specific group—it is about uplifting everyone. When we fight for equity and create spaces where neurodivergent individuals can thrive, the entire organization benefits. Inclusivity fosters collaboration, innovation, and mutual respect, making it easier for all employees to feel valued and supported, regardless of their identity.

By addressing barriers and implementing accommodations, we create a culture where diverse perspectives and strengths are welcomed and celebrated. This environment encourages people to bring their authentic selves to work, resulting in stronger teams and more meaningful contributions. The fight for equity is not just about fairness; it is about building a community where everyone benefits from understanding, respect, and shared success.

Sample of Neurodivergent Inclusion Policy

"This policy outlines our commitment to providing a workplace that embraces neurodiversity and challenges neuronormativity. Our workplace is dedicated to creating an inclusive environment for neurodivergent people where neurodivergent people feel welcome, accepted, and supported (livedexperienceeducator.com)."

Commitment to Inclusion and Support

• We strive to create a workplace where neurodivergent individuals can fully participate and thrive without facing stigma or discrimination.
• Accommodations are provided to ensure equitable opportunities for success, acknowledging that supporting one group often benefits the entire organization.
• We recognize the importance of learning from individuals with lived experience and incorporating their insights into our policies and practices

Guiding Principles

1. Embracing Neurodiversity:
   We challenge neuronormativity by recognizing and valuing the unique contributions of neurodivergent individuals. This means rejecting a "one-size-fits-all" approach and embracing diverse ways of thinking, working, and communicating.

2. Universal Benefits of Accommodations:
   Accommodations like flexible schedules, sensory-friendly environments, and clear communication practices often improve the workplace for everyone. By meeting diverse needs, we enhance productivity, collaboration, and employee satisfaction across the board.

Core Practices

1. Accessibility:

   • Provide accommodations for sensory, cognitive, and communication needs, including noise-canceling headphones, flexible seating, and quiet spaces.
   • Offer training to all staff to promote awareness and understanding of neurodiversity.

2. Clear Communication:

   • Use direct and inclusive language in all interactions.
   • Ensure transparency in processes like onboarding, meetings, and evaluations, with space for feedback and clarification.

3. Flexibility:

   • Allow for flexible work schedules and breaks to support individual productivity and mental well-being.
   • Provide tools such as sensory kits or assistive technology as needed.

4. Feedback and Collaboration:

   • Regularly seek input from neurodivergent employees to inform and improve policies.
   • Encourage open dialogue and create systems for anonymous feedback to ensure all voices are heard.

Implementation and Accountability

• Training: All staff, particularly managers and supervisors, will receive training on neurodivergent inclusion and best practices.
• Policies: Accommodations and inclusive practices will be clearly outlined and communicated during onboarding and revisited regularly.
• Monitoring: The effectiveness of this policy will be assessed through regular surveys, feedback sessions, and updates informed by lived experiences.

R.A.T.S. Framework for Inclusion

The R.A.T.S. framework—Relationship and Rapport, Accommodations, Time, and Sensory Support—offers a practical approach to fostering inclusion and accessibility in diverse environments. When in doubt, remember to focus on R, relationships, and rapport. Building strong connections with others provides valuable insights into their experiences, enabling you to identify ways to support them effectively and leverage your resources or privileges to help.

Relationship and Rapport Building

Strong relationships are the foundation of understanding and support. By taking the time to genuinely connect with others, you can gain deeper insight into their unique challenges and needs. This relationship-building allows you to move beyond assumptions and instead create meaningful, individualized solutions. Relationships are not just about listening—they’re about acting on what you have learned to make environments more inclusive and supportive.

Accommodations

The Americans with Disabilities Act (ADA) has not been updated since 2008, leaving many needs of neurodivergent individuals and others unmet. It is crucial to look beyond what the ADA defines as “reasonable accommodations” and instead focus on what is truly needed. When we move past the bare minimum and provide thoughtful accommodations, we make environments better for everyone—not just for those with neurodivergent conditions but for all individuals navigating shared spaces.

Time

Explicit communication about time, needs, and expectations is essential. Never assume someone “just knows” something because of their age, experience, or tenure. Share critical information early, repeat it often, and clarify as necessary. Clear and transparent communication ensures everyone has the tools they need to succeed.

Sensory Support

Sensory experiences play a significant role in accessibility. For example, at a recent AARC conference, I wore sunglasses indoors because of light sensitivity caused by the bright overhead lights. Similarly, sensory accommodations such as noise-canceling headphones, quiet spaces, or flexible seating can significantly improve accessibility for many individuals.

During my presentation at the same conference, I noticed an attendee with a service dog and a leading cane, indicating visual impairment. Recognizing the need for immediate adjustments, I modified my presentation on the spot. I announced that I would read more directly from the slides to ensure accessibility for everyone. The response was overwhelmingly positive—several people, including the attendee with the cane, stood up to thank me, sharing that this adjustment allowed them to participate fully for the first time. This experience highlighted the importance of anticipating and addressing accessibility needs, even when they aren’t immediately visible. While I made these changes on the fly, it reminded me of areas where I can improve and be more proactive in creating inclusive spaces.

The Importance of Accessibility and Understanding

For me, being diagnosed with ADHD in 2017 was a transformative experience. It gave me clarity and validation, enabling me to better understand the adjustments I had been making throughout my life. Despite being told that certain achievements were out of reach for me, I have built a meaningful career—first in respiratory therapy and now in mental health, where I run a private practice. My journey underscores an important truth: a diagnosis or condition does not define what someone can or cannot do. It might mean working harder or differently, but it does not mean the goal is unattainable.

As you interact with individuals with diverse conditions, remember that these conditions do not stop people from achieving their goals. Instead, they highlight the importance of support, understanding, and collaboration in fostering success. Advocating for neurodivergent inclusion and better clinical practices requires systemic change and individual action. By questioning outdated systems, choosing respectful language, and fostering collaborative communication with patients, we can create environments that support diverse needs and empower individuals to thrive. Every small adjustment we make contributes to a culture of inclusivity and care.

Questions and Answers

Thank you for sharing your personal examples of how neurodivergent individuals can advocate for themselves. How can we advocate more for inclusion, especially in clinical or workplace settings?

This is such an important question. Advocacy for inclusion begins with examining and questioning the systems already in place. For example, I once spoke with professors about challenges they faced in clinical settings, like students who struggled with social cues. These students were not harming patients but were seen as "different" in how they built relationships. One takeaway I shared was that we need to avoid boxing people into specific expectations—like assuming the ICU is the only viable path in healthcare. Not everyone wants to work in the ICU, and that's perfectly fine. We must create space for diverse skills and paths.

From a student perspective, creating safer spaces early on is key. For instance, I once attended a session where students asked questions about accommodations for exams, such as needing more time or using a standing desk. While the session leader provided information about accommodation forms, we later found significant barriers to accessing those accommodations, such as requiring doctor approvals or insurance. This underscores the importance of interrogating outdated systems: when were they last updated, and how can we make them better? Regularly seeking input from students and staff can lead to meaningful improvements.

On your slide about harmful phrases, you highlighted how language can create a silencing effect. Could you expand on why this is important?

Absolutely. Language has immense power, and harmful phrases—like using terms such as "bipolar" or "OCD" casually—can perpetuate stigma and silence individuals who live with these conditions. For example, jokingly saying someone is "so bipolar" trivializes a serious and life-changing condition. Similarly, calling medication "happy pills" dismisses the importance of treatment. In diverse settings, it is crucial to think critically about language and choose words that foster understanding rather than harm. This self-awareness can create a culture of respect and inclusivity.

In a clinical setting, how would you adjust your approach if a patient shows signs of sensory overload during suctioning or an ABG draw?

The first step is to acknowledge the situation and communicate openly. For example, you might say, “This might be uncomfortable or even painful—what can we do to make it a little easier for you?” Many patients, especially those who have undergone frequent procedures, may already have strategies that help them cope. Including them in the conversation gives them a sense of control. For suctioning, there may be fewer options due to its inherently uncomfortable nature, but for needle-related procedures, patients often have preferences that can reduce their discomfort.

Building on that, what about addressing sensory overload in the environment, such as bright lights or loud TVs?

That’s a great point. Creating a low-stimulus environment can significantly reduce sensory overload. When entering a room, I always try to explain what I’m doing: “It’s bright in here—I’m going to turn down the lights a bit. Does that work for you?” or “Let’s turn off the TV for more clarity during this conversation. Is that okay?” If the patient declines, I offer alternatives, such as writing things down or finding another way to communicate. Including the patient in these decisions is essential because hospital stays often strip individuals of their sense of control. Anytime we can return even a small measure of control to them, it builds rapport and trust.

References

Beatty, J. E. (2016). 10 principles of DJ-ing (2nd ed.). Squarespace. https://static1.squarespace.com

Bernstein, E. S. (2020, December 3). Why you need to stop using these words and phrases. Harvard Business Review. 

https://www.institute4learning.com/

Doyle, N. (2020, March 24). The world needs neurodiversity: Unusual times call for unusual thinking. Forbes. https://www.forbes.com.

Ngwagwa. (2021, December 15). Neuroexpansive™️ thoughts. Medium. https://medium.com/@ngwagwa

Editor's Note: This text-based course is an edited transcript of the webinar, Health Literacy & Delivering Culturally Competent Care, presented by Kathleen Weissberg, PhD.

Learning Outcomes

After this course, participants will be able to:

• Define health literacy.
• Recognize health literacy concepts including relevant statistics.
• Identify appropriate assessment tools to evaluate health literacy levels.
• Recognize factors that influence health literacy.
• Describe techniques the practitioner can use to facilitate health literacy in his/her practice.

Introduction

Thank you to anyone who is listening today on this important topic, Health Literacy and Culturally Competent Care. I think these really go hand in hand and are critically important for anyone in any level of clinical practice.

Health literacy is the ability to read, compute, understand, and act on health information so that we can make informed decisions. Low health literacy is a serious threat to the wellbeing of persons who are seeking out any sort of medical care. With the increasing diversity of the clients that we are serving in our practice, we may observe that our communication skills are less effective with people from backgrounds that are different from our own.

In this session, we are going to provide an overview of health literacy and talk about techniques for clear and effective communication, both verbal and written. We are going to talk about selecting easy-to-read health materials, assessment tools, and some other things. Throughout all of this talk, we are going to be interweaving some conversation about cultural competence, because of course, these two items go hand in hand.

Definitions

• Literacy
  • Ability to understand and use reading, writing, speaking, and other forms of communication as ways to participate in society and achieve one’s goals and potential
• Health literacy
  • The degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions

These definitions come directly out of Webster's. Literacy is the ability to understand and use reading, writing, speaking, and other forms of communication as ways to participate in society and to achieve one's goals and potential. Again, we are going to be talking about health literacy more, but this is being able to participate in your daily life, go to the grocery store, go to a place of worship, or whatever it is that you want to do. That is general literacy. Health literacy takes it a step further. It is the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions. As we will see in just a few minutes, the statistics related to health literacy in this country are really staggering.

We all work in the healthcare industry, and I think every one of us would even agree that sometimes it is even challenging for us to be able to navigate the healthcare system with all of the forms and different things that we need to do.

Health Literacy

• Individual and Systemic Factors
  • Communication skills of laypersons and professionals
  • Lay and professional knowledge of health topics
  • Culture
  • Demands of the healthcare and public health systems
  • Demands of the situation/context

When we look at health literacy, it is dependent on several individual and systemic factors not only within myself but also within the environment where I happen to be. Some of those things are the communication skills of laypersons and professionals. How can I, as a professional, communicate to the person that I am trying to serve so that they can understand me? What are the lay and professional knowledge of health topics? It is not only the communication piece but also knowledge of the topic. As that person is communicating to me, can I understand and incorporate that knowledge? We also need to know about a culture, and we will talk more about this as we go on. There are also demands of the healthcare and the public health system, particularly for situations and content. A demand going to see your general practitioner for a checkup is one thing. A demand going to see your cardiologist because you are having a procedure is something totally different.

• What Does Health Literacy Affect?
  • Affects people's ability to:
    • Navigate the healthcare system, including filling out complex forms and locating providers and services
    • Share personal information, such as health history, with providers
    • Engage in self-care and chronic-disease management
    • Understand mathematical concepts such as probability and risk

Health literacy affects our ability to navigate the healthcare system. I just alluded to this. This includes filling out forms, locating providers, locating services, and choosing your healthcare benefits at open enrollment. It can be very difficult sometimes to navigate through that.

This is also sharing personal information such as health history with providers. How much do I share? What should I not share? How do I share that in a way that is understandable by the healthcare providers so that they can provide care for me?

This is also the ability to engage in self-care and chronic disease management. We are going to talk a lot about this. These are preventative types of things like getting your annual mammogram, routine cancer screenings, or as a diabetic checking your sugar.

It is also important to understand mathematical concepts, such as probability and risk. We may need to understand the dosage of medications or tracking health numbers to determine if is it necessary to call a physician or change medication.

Health Literacy Skills

• Numeracy skills
  • E.g., measuring medications, choosing between health plans, calculating premiums & copays
• Health topics
  • E.g., the body, causes of disease, diet, and exercise

Health literacy includes those numeracy skills. This could be calculating your cholesterol level, blood sugar level, measuring out medications and dosages, or understanding nutrition labels. This is very important, particularly for someone who needs to manage their sugar and fat content. Other topics include choosing between health plans, comparing prescription drug coverage, and calculating premiums, copays, and Medicare deductibles. All of this requires numeracy skills. As an aside, I have two young children at home and my daughter always says to me, "I don't understand why I need all this math?" The answer is that we use math every single day.

In addition to basic literacy skills, health literacy also requires knowledge of health topics. Individuals who have limited health literacy often do not have basic knowledge about health, their body, or the nature and cause of disease. In some cases, they may have misinformation about health. They may be getting their information from an unreliable source like social media. Somebody may have tried to give them the information, but they just could not process it. Without having that basic knowledge, they may not understand the relationship between lifestyle factors like diet and exercise and how that impacts various disease processes and health outcomes.

I alluded to this earlier. Health information can overwhelm even individuals with advanced literacy skills. We know that medical science progresses quite rapidly. Perhaps what a person learned about health or biology during their school years has changed. As healthcare professionals, we are most likely more up to date. However, the average person may have outdated or incomplete information. Moreover, health information that is provided during a stressful or unfamiliar situation is unlikely to be retained. A stressed brain does not take in that information always accurately, and there can be gaps. And, the stressed brain may fill in those gaps with misinformation.

Low Literacy

• Global crisis affecting many
• Plain language + Clear communication = A solution
  • Without clear communication, we cannot expect people to adopt the healthy behaviors and recommendations that we champion

Low literacy is a global crisis as it affects a lot of people. This is why it is so important to address this issue and confront the facts head-on. Quite simply put, the responsibility is ours as healthcare professionals to communicate in what we call plain language. We will be talking more about that term in just a few minutes. Without clear communication, we cannot expect people to adopt healthy behaviors and the recommendations that we champion. When people receive accurate, easy to use, and easy to read information about a health issue, they are better able to take action to protect themselves and to promote their own health and wellness. 

Plain Language

• Plain language is communication that users can understand the first time they read or hear it
• Elements include:
  • Organizing information so that the most important points come first
  • Breaking complex information into understandable chunks
  • Using simple language and defining technical terms
  • Using the active voice

Plain language is a strategy for making both written and oral information easier to understand. Users can understand plain language the very first time they read and hear it. Oftentimes, it is very conversational in nature. There also may be anecdotes or stories to get a point across. A plain language document is one where the person can get the information that they need and understand it. What is most important for us as healthcare professionals is to act appropriately on that understanding.

Key elements of plain language include the organization of information so that the most important points come first. These are the most important things that you want that person to know or takeaway. It has to be right up front. We also want to break down the complex information into understandable chunks. We do this when we are teaching and training. We want to use very simple language and define the technical terms. This is no place for jargon. Lastly, we want to use an active voice.

What is important to know about plain language is that it may be plain to one set of readers, but it may not be plain to another set. To put this in perspective, I am talking to a big group of professionals here today. You have a college education, and your level of plain language is going to be something very different from a person who may only have a fifth-grade education or their GED. It is critical to know your audience and test your materials before, during, and after they are developed. Make sure that you are meeting your objectives with your target audience.

Speaking plainly is just as important as writing plainly. These plain language techniques also apply to verbal messages. You want to avoid jargon and explain medical and technical terms. You must apply these concepts to both verbal and written information.

Health Literacy Incidence and Statistics

Let's talk a little bit about the incidents and statistics related to health literacy. I shared that some of these are really staggering.

Low Literacy Statistics

• 36 million adults in the US cannot read, write, or do math above a third-grade level
• Low literacy costs the US $225 billion+ per year
• $232 billion in healthcare costs are linked to low literacy
• Each year about 2 million immigrants come to the US, many lacking proficiency in English

More than 36 million adults in the United States cannot read, write, or do basic math above a third-grade level. Low literacy costs the United States about $225 billion or more every year in things like nonproductive work, crime, loss of revenue due to unemployment, and things like that. We spend in the United States about $232 billion every year in healthcare costs that are very specifically linked to low adult literacy skills. We will see more about this on another slide. A lot of that cost is in emergency room visits and other things that may have been mitigated through preventative services but were not. Each year about 2 million immigrants come to the United States. When you look at that group of people, about 58% of them lack a high school education and are not proficient in English.

• 43% did not understand the rights and responsibilities section of a Medicaid application
• 26% were unable to understand information on an appointment slip
• 60% did not understand a standard informed consent
• 33% were unable to read basic health care materials
• 42% could not comprehend directions for taking medication on an empty stomach

(Campinha-Bacote, D., 2005)

A study was done on health literacy by Campinha-Bacote back in 2005. It is a little old, but they found that of the patients surveyed, 43% did not understand the rights and responsibilities section of a Medicaid application. Twenty-six percent were not able to understand the basic information on an appointment slip like when to go back to see the physician or to go to outpatient for services. Sixty percent did not understand a standard informed consent form, and 33% were not able to read basic healthcare materials. Lastly, 42% could not comprehend directions for taking medication on an empty stomach. I have not seen updated statistics for these parameters, but I can only imagine they probably have not changed a lot. You may start to question how much of your teaching and training is really getting through. Although limited health literacy affects almost every adult at some point in time in their lives, there are some disparities in prevalence and severity.

Vulnerable Populations

• Adults over the age of 65
• Recent refugees and immigrants
• People with incomes at or below poverty levels
• Racial and ethnic groups other than white
• People with less than a high school degree or GED
• Non-native speakers of English

(National Center for Education Statistics, 2006)

Certain populations are more likely to experience limited health literacy. This is not saying that they absolutely will. For example, this does not mean that someone with only a high school diploma or GED has low health literacy. This is just saying that they are at a higher risk. Vulnerable populations include adults over the age of 65, recent refugees and immigrants coming to our country, people with incomes at or below poverty levels, racial and ethnic groups (other than Caucasian or white), individuals with less than a high school degree or a GED, and non-native speakers of English. Again, they are a little more vulnerable to the issue than maybe some other individuals.

Incidence and Identification

• Nearly nine out of every 10 people in the U.S. have limited health literacy
• Education level is not a good predictor of  health literacy
• AHRQ recommends “universal precautions”
  • Assume that most individuals will struggle to understand health information

(HHS AHRQ, 2015; Kutner, Greenberg, Jin, & Paulsen, 2006; Weiss, 2003; Weiss, 2007; HHS ODPHP, 2010)

Nearly nine out of every 10 people in the United States have limited health literacy and have experienced difficulty using health information to effectively manage their health and their health care. There is often a discrepancy between the health literacy level of the healthcare professional and that of the individual receiving health services. This discrepancy is a huge cause of poor communication in health and healthcare. I sometimes have to step back and think, "Did I say something over their head?" My parents are elderly, and I often have to explain different things to them. You have to give them the information in the language that they understand. 

It is also important to note that somebody's education level is not a good predictor of his or her health literacy. Again, I can use the example of my parents. Both of them have college degrees, but they really struggle with setting up a new glucometer, doing their Medicare forms, et cetera. In fact, since almost 90% of individuals have limited health literacy, these are individuals of all races, ages, incomes, and education levels. For this reason, the Health and Human Services Agency's Healthcare Research and Quality (HHS AHRQ) recommends that we adopt a universal precautions approach. We are very familiar with that as it relates to infection control. But in this case, we are talking about is health and healthcare professionals. We need to assume that most individuals will struggle to understand health information.

Again, literacy skills are a very strong predictor of health status even more so than age, income, employment status, educational level, and racial or ethnic group. We cannot necessarily identify individuals who are going to have limited literacy skills. We are going to talk more about that in just a second, but clients may speak well or appear well-educated. They often do not tell anyone about their difficulties with reading and writing. They become very skilled at masking some of these things. If you adopt that universal precautions approach, you assume that all of your patients can have difficulty somewhere when understanding health information. To reduce the risk of communication issues, it is recommended to simplify all communication and confirm comprehension for all patients. If you do that more often than not, somebody with a higher health literacy is not going to be offended by the fact that you simplified it a little bit. Actually, they will probably be a little bit more appreciative.

Signs of Low Literacy

• Poor compliance with treatments and appointments
• Watching and mimicking others
• Not knowing the names of regularly used medications
• Making excuses for not reading
• Bringing someone who can read to appointments
• Vocalization or sub-vocalization when reading
• Confusion or frustration when reading

There are some signs of low literacy. There can be poor compliance with their treatments and appointments. They may not follow up on their medications. They often watch and mimic others to learn. They may not know the names of their regularly used medications or how often they need to take them. They may make excuses for not reading. "I'll just take this home with me," or "I'll read it later because I forgot my glasses for the appointment." Bringing someone with them to their appointments who can read and give them that information is helpful in these cases. They may also use vocalization or sub-vocalization as they are reading to themselves. They may demonstrate confusion or frustration on their face.

• Behaviors
  • Patient registration forms are incomplete or contain mistakes
  • The patient does not take medication as directed
  • The patient does not follow through with lab tests, imaging tests, or referrals
• Responses to receiving written information:
  • "I forgot my glasses. I’ll read this when I get home."
  • "I forgot my glasses. Can you read this to me?"
  • "Let me bring this home so I can discuss it with my children/spouse."
• Responses to questions about medication
  • The patient is unable to name medications
  • The patient is unable to explain a medication’s purpose
  • The patient is unable to explain the schedule/frequency for taking a medication

(Weiss, 2003)

There are additional signs, and this comes from Weiss in 2003. They may make mistakes or have incomplete forms. The client may not take their medication correctly or not follow through with tests, referrals, or labs. They again use excuses like they forgot their glasses. They may ask if you can read the form to them or want to take it home. They may also say that they cannot make the decision right now or need to discuss it with their family member. They also often do not know the purpose of their medication or the schedule, dose, or frequency. Those are some of our signs that as you are working with individuals you may see.

Relationship Between Health Literacy and Health Outcomes

What is the relationship between health literacy and health outcomes?

Preventative Services

• More likely to skip important preventive measures
• Those with low literacy enter the healthcare system when they are sicker

(Scott, Gazmararian, Williams, & Baker, 2002; Bennet et al., 1998)

I have already alluded to some of these. According to research studies, persons with limited health literacy skills are more likely to skip important preventative measures. These are things like mammograms, Pap smears, flu shots, and routine vaccinations like the pneumonia shot or something like that. When you compare that to those individuals who have adequate health literacy skills, these clients enter the healthcare system sicker as they are skipping a lot of preventative services. 

Knowledge of Conditions and Treatments

• More likely to have chronic conditions
• Less able to manage chronic conditions effectively
• Less knowledge of illnesses and management

(Williams, Baker, & Parker, 1998; Schillinger et al., 2002; Schillinger et al., 2003; Williams, Baker, Honig, Lee, & Nowlan, 1998; Kalichman, Ramachandran, & Catz, 1999; Kalichman & Rompa, 2000; Kalichman, Benotsch, Suarez, Catz, Miller, & Rompa, 2000)

Persons with limited health literacy skills are more likely to have chronic conditions, and they are less able to manage them effectively. Studies have found that patients with things like high blood pressure, diabetes, asthma, or HIV and AIDS often have limited health literacy skills. They have less knowledge about their illness and management. They then enter the healthcare system with more intense symptoms and are sicker than if they had this information.

Hospitalization

• Associated with increased preventable hospital visits and admissions
• Higher rate of hospitalization
• Higher frequency of emergency services use

(Baker, Parker, Williams, & Clark, 1997; Baker, Parker, Williams, & Clark, 1998; Baker et al., 2002; Gordon, Hampson, Capell, & Madhok, 2002)

The rates of hospitalization are higher as well. Limited health literacy skills are associated with an increase in preventable hospital visits and admissions. Studies have demonstrated a higher rate, not only of hospitalization but the use of ER services among patients with limited health literacy skills. They are not necessarily seeing routine physicians or using walk-in clinics. Instead, they are going straight to the ER.

Health Status

• More likely to report their health as poor

(National Center for Education Statistics, 2006)

Additional studies show that individuals with limited health literacy skills are significantly more likely to report their health as poor than persons with adequate health literacy skills.

Healthcare Costs

• Greater use of services designed to treat complications of the disease
• Less preventative service use
• Higher hospitalization and ER use associated with higher healthcare costs

(Friedland, 1998; Howard, Gazmararian, & Parker, 2005)

There are healthcare costs. Persons with limited health literacy skills make greater use of services that are designed to treat complications of the disease and less use of services that are designed to prevent complications. In my community, they are trying to change this narrative by offering incentives or contests for people that use more of those preventative services. Whether or not it is working, I have no idea. I have not seen any sort of research or evidence, but I know communities are really trying hard to flip that narrative. In the above studies, a higher rate of hospitalization was noted in those with a lower rate of health literacy. As stated, there is a higher use of ER services by those with limited health literacy. Unfortunately, this translates into higher healthcare costs.

Stigma and Shame

• Negative psychological effects
• Sense of shame about skill level
• Individuals may hide reading or vocabulary difficulties to maintain

(Parikh et al., 1996; Baker et al., 1996)

Low health literacy has negative psychological effects. One study found that those with limited health literacy skills reported a sense of shame. This shame causes them to hide their reading or their vocabulary difficulties to maintain their dignity. As healthcare practitioners, we need to do everything that we can to communicate in a way that does not further exacerbate that stigma and shame. This gives the person a place of comfort where they feel good about communicating and sharing their information.

Practitioner's Role

Practitioner Role

• Ensure health-related information/education matches a person’s literacy abilities; cultural sensitivities; and verbal, cognitive, and social skills
• Provide information and education that promote self-management for optimum health and participation
• Facilitate health literacy by promoting systems of care or environments that adhere to health literacy principles and strategies

(DHHS, 2013)

We can make sure that all health-related information and education that we provide to our patients/families, colleagues, and other people match that person's literacy abilities, cultural sensitivities, and verbal, cognitive, and social skills. The Healthy People 2020 Campaign from the Department of Health and Human Services was published in 2013. It encourages that all clinicians use appropriate communication and education skills to help enable all people to gain access and to understand the services that we are providing. This includes information and education that promotes self-management for optimum health and participation. Besides, I believe we all have a role in facilitating clients' health literacy by promoting systems of care and promoting environments that adhere to health literacy principles and strategies. Within your own environment, you may have already adopted every single one of these principles. But if your environment is not adopting these, you may not be getting that leg up. It really has to be a systemic type of intervention and change.

Link to Literacy

• Stress the importance of:

5.Access to services and equity issues

(Levasseur & Carrier, 2010)

We, as healthcare professionals, are linked to health literacy because we stress the importance of somebody's capacities, capabilities, function, and participation. We want to empower our clients and using a holistic approach. We do not look at our clients in a silo. We want to have a client-centered practice to make sure we are delivering what our clients need. We teach information and use different methods to do that. Lastly, we look at access to service and equity issues within our professions.

Integrating Health Literacy Into Practice

• Be informed about health literacy and recognize it
  • Learn about health literacy and ways to integrate it into practice
  • Do not assume that all clients understand what they are told even if they nod their head or that they can read
  • Recognize the powerlessness, shame, and sense of failure that some people may feel
  • Identify your client’s characteristics

You might be wondering about strategies. How can I improve my client's health literacy? How do I integrate it within my practice? The first thing you need to do is be informed about health literacy and be able to recognize it. This refers to your knowledge, your ability to identify challenging health literacy information, and being able to look at an intake form or a brochure to identify if there is something amiss. What can we do to make this a little bit easier to understand?

You can learn about health literacy and ways to integrate it. Obviously, this is not assuming that all of your clients understand what they are told, even if they nod their head or can read. I think there is a saying out there that it takes you seven times of hearing something before you truly learn it. Seven times may not be the answer, but we cannot assume that they get it on the first try.

We also have to understand the powerlessness, shame, and sense of failure that some people may feel because they cannot understand and carry things through.

We need to identify clients' characteristics. This is their knowledge and teaching preferences. Not everybody is a verbal learner. What are their skills? What are their beliefs? What is their culture? What are their barriers to healthcare? Obviously, culture plays a big piece in that as well. We know that clients with low literacy levels are usually very reluctant to ask questions as they are skillful at hiding their problems.

• Important to recognize individual and societal barriers to the promotion of health literacy
  • Functional declines associated with aging
  • Lack of reading and writing proficiency
  • Low levels of formal education or lack of health knowledge and skills
  • Different mother tongue or cultural beliefs
  • Living with disabilities and social stigma
  • Experiences in early childhood

Although there are diverging opinions about whether or not we can truly evaluate health literacy, it is important to recognize that there are both individual and societal barriers to the promotion of health literacy. There are functional declines associated with aging. There can be a lack of reading and writing proficiency. There are low levels of formal education or lack of health knowledge and skills. A client can have a different mother tongue. There can be a different native language or cultural belief from where this person is accessing their services. They can have disabilities and incur social stigma. Then, of course, they may have experiences from early childhood. This is outside of the scope of this session, but there is a lot of research on trauma-informed care in the literature. Experiences in early childhood have a significant impact on how someone accesses and utilizes health services and their overall health behaviors later in life. It is all interwoven.

• Standardize practice to health literacy
  • Develop professional standards and position statements for health communications and interactions
  • Include health literacy criteria into quality and accreditation standards of health care organizations

We can also standardize practice to health literacy. What does that mean? This focuses on your ability to take into account a client's level of health literacy during your intervention. In addition to being informed, we all can go back to our national professional associations or our regulatory and licensing bodies. Those different organizations can contribute to developing professional standards, position papers, and position statements that really help to standardize the integration of health literacy into our practice. I think all of our boards have certainly done that. In fact, all employees may value health literacy, and it may be included in every health and medical care facility's policies and goal. 

• Consider health literacy by making information accessible
  • Adapt the information to individual needs, circumstances, and abilities to show how it is relevant
  • Communicate in a comprehensive way using more than one way of exchanging information
  • Combine oral instructions with written information
  • Use a structured educational approach
  • Use demonstration, experimentation, and repetition when teaching

We also need to consider health literacy by making the information accessible. This refers to the ability of us to improve how we use the information to educate our clients. We are adapting the information to individual needs, circumstances, and abilities. Are we showing them how it is relevant to their particular situation? Are we communicating in a comprehensive way and in more than one way of exchanging information? This can be verbal, gestures, and written information. This is combining oral along with the written information in a clear simple language for future reference. You can also use demonstration, audio, visual aids, videos, or equipment. This is using a structured educational approach. We also need to use demonstration, experimentation, and repetition to increase the effectiveness of that teaching.

• Design written information
  • Active voice
  • Clear simple language
  • Pictures or drawings to illustrate procedures
  • Interactive and with recaps
  • Most important information placed first
  • Personalized

We need to do this in the active voice. These are common words, short words, and short sentences with 10 words or less. This is not using technical terms, value judgment words, jargon, abbreviations, or acronyms. We should use examples to explain difficult words or maybe a story to explain them. You can use the same words throughout the entire material or use pictures or drawings to illustrate. This can be for an exercise or a breathing activity. You can also use photos to do that. You want it to be interactive with recaps along the way. The most important information should be first and it should be personalized. If the information is not personal to them, they are probably not going to retain it.

• Communicate effectively and simply
  • Announce the subject
  • Convey the message
  • Ask clients to say in their own words what they remember of the information or methods taught

There are other ways to communicate. It is important to communicate effectively and simply in an atmosphere that is conducive to that communication. Announce the subject and convey the subject. We will talk about teach-back in a little bit. You want to ask the person about the information and have them say it back in their own words. "What do you remember about this information?" "What do you remember about what we just taught you?" I think we intuitively do this in our treatment. It allows us to identify any misunderstandings and correct them.

• Use the Ask Me 3

1.What is your main problem today?

2.What do I need to do for you concerning this problem?

3.Why is it important to you?

Use the Ask Me 3 method. "What is your main problem today? What do I need to do for you?" Or, "What are you seeking from me concerning this problem?" And, "Why is it important to you?" You can start every single session with that so that you know you are doing what is most important to that client.

• Help clients make optimal use of health services
• Increase the quality of professional communication
• Use anecdotal information as appropriate 
• Do not overburden clients with information or recommendations

We can help our clients to make optimal use of health services and increasing the quality of our own communication. We have talked about that in our own professional competencies as it relates to health literacy. We can use anecdotal information. I already shared that. Personal stories sometimes hit home more than anything. Obviously, this is not overburdening our clients with information or recommendations. I see this so many times when we deliver home programs or home instruction. We just bombard them with everything under the sun. We do not need to do that. Let's just keep it simple on what they really need to focus on.

• Strengthen interactions
  • Encourage clients to ask questions
  • Take an understanding attitude
  • Shame-free environment
  • Increase the time spent on giving information
  • Observe and listen actively

This goes back to creating an environment where they are comfortable. You want to encourage them to ask questions and have an understanding attitude rather than a blaming attitude. You wat a shame-free environment. We want to increase the time that we spend on giving information. Speak slowly, repeat, observe, and listen actively. One of the best things we can do is just be quiet. Give clients the time to organize their thoughts to identify what their issues are, their constraints, and to formulate their questions.

• Strengthen interactions
  • Increase cultural competency
  • Follow up on interventions to see if recommendations have been followed and if clients have questions
  • Involve not only the client but also families

Increase your own cultural competency. Be a professional who really respects those differences. You want to be open to learning and willing to admit that there is more than one way to look at the world. Follow up on those interventions to see if the recommendations have been followed and if they have any questions. We want to involve the client and their families. The families are often cultural brokers for our clients.

• Intervene to increase client’s health literacy
  • Optimize reading/writing skills including use of the Internet
  • Increase knowledge of health
  • Encourage clients to read every day
  • Foster empowerment by using a client-centered approach

We want to increase the client's health literacy. These are interventions focusing on the client's health literacy level. You can use the internet to optimize their reading and writing skills. You want to increase their knowledge of health and health determinants. We have that opportunity to teach and train. You want to encourage them to read every day and take a local health literacy program. This is outside of our scope, but it is a nice thing to do. If you know there are programs in the community, turn these folks on to them. We want to foster empowerment, using a client-centered approach. Give them confidence in their ability to take more control of their life. Empowerment includes making them responsible for taking care of their health, making decisions about their health, and truly being engaged. They are responsible for their health and not just along for the ride and doing what the physician says. They are responsible, and we can help them to find ways to do that.

• Collaborate to increase clients’ health literacy
  • Participate in intersectoral activities
  • Provide education to other health care professionals about health literacy topics

We have an important advocacy role in influencing the goals of the health facility where we work regarding health literacy. We may want to participate in public health initiatives or research. We can raise awareness among other players in the clinical setting within our own organization, other stakeholders, support staff, managers, and community partners to lead the charge and work on education.

Effective Communication with Diverse Populations

There can be communication challenges as we start to care for an increasingly diverse patient population. We need to effectively gather information from patients to foster individual care and to demonstrate a cultural understanding. When we look at effective health communication, it is influenced by cultural values, attitudes, and beliefs. It involves providing healthcare-related information to an individual in a way that is understandable and increases their knowledge. Again, our end goal here is to positively influence their health behaviors and interventions. 

Communication

• Verbal
  • Sharing information in a one-on-one interaction, usually orally, to achieve a shared meaning
• Nonverbal
  • Conveying meaning without words, including using gestures, facial expressions, eye contact, body language, and clothing
• Written
  • Using written symbols, such as letters and numbers, as well as pictures and graphics

(Adeyanju, 2008; Wanless & Cameron, 2010; Norton, 1983; Poyatos, 1983)

There are three different ways that we communicate. We have verbal, non-verbal, and written. We use all of these when we communicate, but the linguistic characteristics can also include dialects, regional variants, literacy levels, and more. Even though you are using these types of communication, there are variations within them.

Communication and having a trusting relationship between the patient and the healthcare provider are critically important. Research shows that individuals with communication needs often have poor health outcomes, they have trouble following medical advice, and they are less satisfied with their healthcare interactions overall than individuals who do not have any sort of communication barriers. Recognize that every patient enters the healthcare system with their own unique illness experience. You can learn a lot about a person by adopting skills and communication techniques that are nonjudgmental to allow that person to share what is most important to them.

• Compared to patients who are simply told what to do, patients who are encouraged to discuss their perceptions of illness and expectations for treatment:
  • Experience a greater sense of control and feel more involved in their care
  • Suffer less from anxiety
  • Are more likely to accept hospital routines and treatment schedules

(Muñoz & Luckmann, 2005)

Clients that are encouraged to be partners and discuss their perceptions and expectations have a greater sense of control. They feel more involved, have less anxiety, and most importantly are more likely to accept routines and treatment schedules. When a person cannot describe an experience of illness, you cannot communicate effectively about disease or treatment. You lack that basic connection that you need to provide appropriate care.

This is where we get into some assessments and guides and additional information to help us. These are additional resources available to you. There are a lot of different models out there that can help you to provide or facilitate patient-centered care. They promote effective communication and cross-cultural encounters. I will present these, but you need to take some time to feel comfortable using them in your daily practice. As you do, you can gain a better understanding of that patient's perspective about their illness in light of social, cultural, historical, and other factors that contribute to that experience.

Transcultural Assessment Guide

• Bio-cultural Variations and Cultural Aspects of the Incidence of Disease
• Communication
• Cultural Affiliations
• Cultural Sanctions and Restrictions
• Developmental Considerations Restrictions
• Educational Background
• Health-Related Beliefs and Practices
• Kinship and Social Networks and Practices
• Values Orientation
• Nutrition
• Religious Affiliation

(Boyle, 2003)

The first tool that we are going to talk about is Andrews' and Boyle's Transcultural Nursing Assessment Guide. It was initially designed for nurses, but there is a lot of applicability to other groups. The authors of this particular model found that a comprehensive cultural assessment is a foundation for culturally and linguistically competent nursing or healthcare. Looking at, what is my communication? What are my values as it relates to my culture? How do I approach nutrition? What is important to me as it relates to nutrition, religion, et cetera? And again, how do those guide my healthcare interactions? There is a lot more information about this and additional handouts.

Other Communication Models

• LEARN Model (Berlin & Fowkes, 1983)
• BATHE Model (Stuart & Lieberman, 1993)
• ETHNIC Model(Levine, Like, & Gottlieb, 2000)

Three others are out there, and these all use mnemonics. The LEARN Model suggests this framework for listening, explaining, acknowledging, recommending, and negotiating. The "N" or negotiating is what we put forth as a healthcare practitioner. We have to sometimes negotiate what the course of treatment is going to be and what kind of health outcomes we are looking for as it relates to what we are trying to achieve in this setting.

The next one is something called the BATHE Model. This helps us to understand the psychosocial context of the patient's experience with illness. We ask them very simple questions about background, affect, trouble, handling, and then expressing empathy. What is the background? "Tell me a little bit about this illness and what you're experiencing." "How has this caused you trouble in your daily life?" "How have you been handling it?" "Have you been seeking medical attention from a physician?" "Have you been seeking medical attention from an herbalist or using over the counter remedies? Then, you start to get an understanding of what is their primary health concern, and how are they addressing that. Once you know that, the next question is, "How can we help?" Remember, what their primary health concern is and what my primary health concern is for them may be totally separate things. You have to step back and this leads to negotiation. I see this all the time in long term care. People will come in and develop these grandiose care plans for them like they are going to lose weight, but that is not what the patient wants. If the goal is not something the client wants, they are never going to adhere to it.

The final one is ETHNIC. This is a framework to use for culturally competent clinical practice. Many of the questions are open-ended questions to garner their explanation (E) of their illness. The next is treatment. What treatment (T) have you tried or what advice have you have sought from healers (H)? Negotiation is the "N" and is about mutually acceptable outcomes. Lastly, there is intervention (I) and then collaboration (C). Obviously, you can see a theme with all of these models. One appeal of this particular model is that it does not frame the patient's beliefs as exotic or different. If they are seeing an herbalist or a cultural or spiritual type of healer, it is seen as okay as it is part of their culture. It looks at how that fits with what they are engaging in right now in the healthcare continuum. Your most successful care plans are the ones where you marry those two together. 

Language Assistance Services

Overview

• Interpretation of verbal communication
• Translation of written documents
• Using interpreter services and translated documents ensure better understanding by providing a common language.
• Language assistance services help you provide quality care to all of your patients by facilitating effective communication

(Shi, Lebrun, and Tsai (2009)

When we look at language assistance services, these include the interpretation of verbal communication and the translation of written documents. Using interpreter services and translated documents ensures better understanding by providing a common language. Hopefully, these are things that are available to you in your setting. Many settings have said that the provider must offer these types of services. You might need to just ask around what is available to you. Communicating in different languages during a healthcare encounter can lead to a lot of confusion. It affects the quality of care, treatment decisions, and understanding. The bottom line is that it affects compliance with healthcare recommendations and treatment plans. Therefore, effective clinical encounters depend on mutual understanding between the healthcare provider and the patient. The language assistance services can help you to provide quality care to all of your patients by facilitating effective communication with individuals with any sort of communication needs, including limited English proficiency. You will see this acronym, LEP, or limited English proficiency, in some of the other slides.

Again, when we are talking about translation and interpretation, this may not just be somebody who maybe speaks a different language. It could be someone who has hearing difficulty. It could be somebody who maybe has a speech and language communication type of issue. We know that language assistance will help you do your job better when you and your patients can understand each other. You are more likely to deliver quality care and services because you are more aware of your patient's needs.

With Language Assistance

• Interpretation and translation
• Trained interpreters, who can communicate fluently with both the patient and health care provider
• Translated written materials such as intake forms and patient education
• Graphics and signage

(National Council on Interpreting in Health Care, 2008; Torres, 2001)

With language assistance, your patients are more likely to understand their health conditions, to understand their treatment plans, to follow the recommendations that you are giving to them, and to rate their care satisfactorily. This might be outside of your scope, but this is very important for all of our providers is to have really good satisfaction surveys at the end of care. We want to make sure that we are giving people information in a way that they can understand.

Language Assistance Services

• Interpretation and translation
• Trained interpreters, who can communicate fluently with both the patient and health care provider
• Translated written materials such as intake forms and patient education
• Graphics and signage

(National Council on Interpreting in Health Care, 2008; Torres, 2001)

Again, interpretation is verbal, and the translation is written. We are going to talk about both of those as we go along. These terms are very different and are not used interchangeably as they require two totally different skillsets. Interpretation requires strong listening and speaking skills. Translation involves reading and writing skills.

When we talk about language assistance services, we are going to talk a lot about trained interpreters and trained translators. Trained interpreters are those who can communicate fluently with both the patient and the healthcare provider. These are people who can provide valuable assistance during encounters with patients with limited English proficiency and other issues to improve the quality of care.

Also, we need to really look at our written materials. These are intake forms, consent forms, assessment tools, and patient education materials. I will only speak from my own experience. Within my organization, we started quite some time ago converting materials that we were giving out to our therapists, patients, and providers. We translated these into multiple languages because we realized that we just were not hitting the mark. Thus, we need to look at what we are doing so that we can develop and translate forms into a patient's language, into a provider's language, or a colleague's language.

Graphics and signage are other areas. We will be talking a little bit more about that in just a few minutes. These help to make sure that individuals with limited English proficiency can understand healthcare instructions and navigate through the healthcare system. Even if the material is not verbal, you can oftentimes get there through photos, gestures, demonstration, and signage with pictographs.

Issues with Language Barriers

• Impact access to health services
• Jeopardize comprehension of diagnosis, treatment, and follow-up care
• Diminish quality of care
• Increase health care costs

(Perkins, 2003; Grantmakers in Health, 2003)

When language assistance services are minimal or non-existent, the resulting language barriers present a lot of different challenges within the healthcare system. As an example, language barriers have been shown to impact access to health services at a lot of different entry points. It is not just when you are providing treatment, but it can affect whether a client has health insurance or receives basic preventative and specialty care. It may also jeopardize a patient's comprehension of their diagnosis, treatment, treatment options, and follow-up care. It can diminish the quality of care, and ultimately, lead to adverse clinical outcomes because the person did not follow through with recommendations. It can increase healthcare costs due to inefficiencies. Research suggests that language barriers can impede access to health services as much as the lack of health insurance can.

Interpreter Services

• “The process of understanding and analyzing a spoken or signed message and re-expressing that message faithfully, accurately, and objectively in another language, taking the cultural and social context into account “
• Provided for low English proficiency status
  • Limited ability to read, speak, write, or understand English

(HHS OCR, 2003; (National Health Law Program, 2010)

Interpreter services facilitate communication between two or more individuals who do not speak the same language. This is a basic definition from the National Health Law Program. It is also defined as the process of understanding and analyzing a spoken or assigned message and then re-expressing that message faithfully, accurately, objectively in another language, taking the cultural and the social context into account.

Interpreter services can be provided to those with limited English proficiency or low English proficiency, hearing loss, or any other circumstance that would make it difficult for that person to hear or understand a conversation. It can also be instructions, advice, or any oral communication. Limited English proficiency status includes a limited ability to read, speak, write, or understand basic English. The vast majority of our healthcare system is in English. We need to understand this to navigate.

Interpreter Service Skill Set

• Proficiency in both the language of the patient and the provider (typically English)
• Cultural competency
• The ability to work in stressful situations
• Avoid the use of untrained interpreters and/or minors including family, friends, and ad hoc clinical staff interpreters

Interpreters have different skills including proficiency in both the language of the patient and the provider, typically English. It is also not just the language. I find this so interesting because I am engaged in doing a lot of translation services. It is not just language, but it is also dialect. You may have someone who speaks Mandarin, Spanish, or Cajun French. There are also different dialects for very specific words and phrases. You really have to know where is that coming from and make sure that the interpreter is trained in that dialect, not just the language.

The person should also have cultural competency and an understanding of what culture brings to the table. Culture impacts every aspect of communication. They also have to have the ability to work in stressful situations. When people use this service, it is because someone is accessing the healthcare continuum and need your services. They need respiratory services and are accessing your service. This is a stressful situation, and you do not want your interpreter to cause any more stress or grief for your patient than they are already going through.

We know that interpreters sometimes can be really tough to find, but you can recruit them from bilingual staff members. Again, I will take a page out of my own book as this is what we have done within our own organization. We have found individuals who speak various languages, and they assist with those types of services. You can also use a dedicated staff interpreter that you have hired or use a contract agency. There are specific agencies out there and also community volunteers. I remember working in a community where the primary language was Russian. It was really interesting. We brought in individuals from that community at large to assist us with those types of activities. It does not matter who you use, but you do have to make sure that their language skills have been assessed and they are appropriately trained to provide these interpretation services.

Do not use untrained interpreters, minors, family, or friends. Minors and family members do not always give the whole message as they are too close to the situation. Untrained interpreters have been associated with poor quality of care. There is a conflict of interest and mixed agenda. They have their own agenda. And, higher rates of interpreter errors can really lead to severe clinical consequences.

Providing Written Materials

• Written materials are appropriate for patients with communication needs
• Translated written materials may include:
  • Signage
  • Applications
  • Consent forms
  • Medical/treatment/exercise instructions
• Clearly identify the audience for the materials, including literacy level, culture, and language

We have talked a lot about providing written materials already. Written materials improve communication. We want to make sure that written materials are available in other languages through the translation of existing written materials. Now, keep in mind that the translated written materials should never substitute for oral interpretation if an oral interpretation is more appropriate. If you want to do a verbal education, that would be the way to go.

Again, when we think about translated materials, it is signage in our office and community, applications, consent forms, instructions, pamphlets, marketing materials, et cetera. Everything that you touch within your organization might need to be translated.

There are web-based applications. My smartphone just updated, and there is a translation app on it now that I never had before. Those are great in a pinch, but those are not necessarily the types of translation materials that you want to create. If I use this app to translate something to another language and send it to a person that is fluent in that language, often they will say that the phase is not the way they would have said it. Thus, I would strongly caution you from overusing this option.

As we start to look at the written materials that we might need to develop, we should identify the audience for the material and their literacy level? What is their culture? What is their language? What is their dialect? And as we are translating materials, they should go through a rigorous review and back translation. Back translation is the process where one translator translates a document into a target language, and then a second independent translator translates the document back into English to check that the appropriate meaning is conveyed. For example, I use a person to translate my Spanish materials for me. I am fluent in Spanish so I then translate the document back into English to make sure that it all looks and says what it should.

Again, technology makes it a little bit easier, but it is really preferable to use professionally translated materials. And if possible, it is actually preferable to develop the materials in the language and the intended audience, rather than translating. I know this is not always possible, but that is definitely the ideal.

Use of Symbols

We already talked a little bit about the use of symbols and this comes directly from Hablamos Juntos which is a Robert Wood Johnson program. These are universal symbols that we see all over the place (Figure 1).

Figure 1. Universal symbols in health care (Attribution: Hablamos Juntos and SEGD.ORG -permission granted).

You can see symbols for things like a nurse, healthcare, or a physician. It is helpful to use some of these when creating signage. It helps our patients really to feel more comfortable and confident within the setting.

Graphic Cards

We can also use graphics cards. This particular graphic card is the Wong-Baker Faces Pain Rating Scale as seen in Figure 2.

Figure 2. Wong-Baker Faces Pain Rating Scale (Lord Belbury, CC BY-SA 4.0 <https://creativecommons.org/licenses/by-sa/4.0>, via Wikimedia Commons).

These can be used for those who are not literate or may have developmental or cognitive impairments. You can have pictures to show services or symptoms. There are a lot of these different types of tools that are out there in the public domain. Keep in mind that this is where culture comes back into play. In Figure 2, these faces make sense to me, but this may not be universally appropriate to all cultures. For example, different cultures view pain in different ways. This may not be appropriate to use if a person's culture does not recognize, treat, address, or comment on pain in the same way that we would. 

Obtaining Translated Materials

• Using trained, internal bilingual staff members as translators
• Hiring translation companies
• Collaborating with the community of the target audience
• Purchasing translated materials
• Locating web-based resources
• Researching other resources, such as state Medicaid programs, insurance companies, or pharmaceutical companies

If you cannot create the materials in the original language, which is again our ideal, there are a lot of different options out there. I have already touched on some of these. Using trained internal bilingual staff as translators are one option. This could be part of their job description, or they do it on the side for you. If somebody is bilingual, often they will have a laptop or a keyboard in their language. In contrast, if you look at a traditional keyboard here in the United States, it is an English Anglo type of keyboard. But, if I speak Spanish or Russian, I may have a keyboard that has the symbols and the letters that are appropriate for that language. This can be a real bonus to have that available to you.

We can hire translation companies. Collaborating with the community of the target audience may be another option. A family member who is part of this cultural group at large may be able to help you. You can certainly purchase translated materials, and there are web-based resources out there. There are a lot of other different resources.

Our state Medicaid programs, insurance companies, and pharmaceutical companies have translated materials. I know Pfizer and Lilly and a couple of others have a lot of different translated patient education materials in a variety of different languages. I think whatever the source is of your written materials, you have to evaluate them to make sure that they really do state the health information and are appropriate for the intended audiences' literacy level, their culture, and their language.

Translator Qualifications

• Previous education, training, and experience in translation
• Command of both English and the language into which the material will be translated
• Familiarity with medical terminology

If you are planning to use a translator, make sure that that person has the appropriate qualifications, education, and training. They also should have experience in translation. If they do not have the experience, you can put them through a rigorous on-the-job interview. They need to have a command of both English and the language into which the material will be translated and familiarity with medical terminology. This is really important. The medical terminology for respiratory therapy or terminology related to cancer as an example can include a lot of words with no equivalent in other languages. Thus, that person has to really understand what you are talking about to be able to put that into another language and be able to explain it with any degree of accuracy.

Again, we have already talked about involving the community. If you have no other way to do it, bring in somebody from the community who speaks that language. It can be one of your volunteers or someone who visits your site.

Involve the Community

• Ensures materials:
  • Meet community needs
  • Reflect differences in dialect and culture
  • Are appropriate for the community’s cultures, education, and literacy levels

Make sure your materials meet the community needs and reflect those differences that we have talked about as it relates to dialect and culture. Spelling, grammar, and punctuation might seem silly, but we need to make sure those are all appropriate, particularly as it relates to things like verb conjugation. This all needs to be appropriate for the community culture, their education, and their literacy level. This is where cultural competency intersects with health literacy. This is knowing what is important to that culture and knowing their general views and ideas as it relates to health and incorporating that. Again, it is not my story, but it is that person's story. We want to make sure that it is accurate, useful, and it truly reflects their lifestyle and what it is that they need to be doing.

Signage for Right to Interpreter

Many facilities post signage regarding the right to an interpreter as shown in Figure 3. These are posted in a language that is most appropriate for the culture of the community of clients that are being served.

Figure 3. Example of signage for the right to an interpreter.

I see these a lot of times in hospital-based systems. You want to look these types of things up because everyone has that right to interpretation services. This gets back to the provider to be able to offer this. I cannot stress this enough. Go back and ask the questions. What do we have available and how can we handle this? This is taking a page out of my own industry, which is long-term care. We are required to complete the minimum data set. It actually states right in there if they want interpreter services. If they do, you have to provide that. It is right there. A provider cannot say that they cannot do that. If we do not provide those services, we are limiting access to that person's ability to obtain the healthcare services they need.

"I Speak" Cards

We also may find that people have, "I Speak" Cards. Hopefully, you have seen these. An example is in Figure 4.

Figure 4. Example of "I speak" cards (Attribution: https://www.census.gov/).

There is a phrase in different languages so a patient can communicate to others which language they speak. They can hand this to someone. 

Interpreter Qualifications 

• Proficiency and ability to communicate information accurately in both languages
• Knowledge in both languages of specialized terms/ concepts
• Understand confidentiality and impartiality rules
• Understand regionalisms, dialects
• Understand and adhere to the role of interpreter

(HHS OCR, 2003)

Here are a couple of the things about interpretation and translation before we move on to some health literacy tools or readability tools. This comes directly from OCR and health and human services. They need to demonstrate proficiency and an ability to communicate information accurately in both languages. They also need to identify the most appropriate mode of interpreting whether that is verbal, written, or in some other way. They need to know both languages to the extent necessary to convey specialized terms or concepts and any specialized words or phrases that might be utilized in your particular industry or setting. They have to understand confidentiality, impartiality rules, regionalisms, dialects, and differences in language use. We will talk about this on another slide, but they have to adhere to the role of interpreter and cannot shift out of that role into some other role. They have to stick with that. This is a problem sometimes with interpreters. They are there solely to interpret and sometimes we see them getting a little more involved on a personal level. We do not want to see this.

Interpreter Roles

• Conduit
• Conveys verbatim in the target language what has been said by the other in the source language, without additions, omissions, editing, or polishing
• Culture Broker
• Provides a cultural framework for understanding message interpreted
• Clarifier
• Explains terms that have no linguistic equivalent and checks for understanding

There are three basic roles that an interpreter may have. The first one is called a conduit, and this is the default role. This is the most basic. This is the role that we typically see of an interpreter. In this role, the interpreter conveys verbatim to the target language what has been said by another person in the source language. They do not add, omit, edit, polish, or put their spin on it. It is a verbatim translation. This is the typical role that we will see of an interpreter.

Another role is called a culture broker. I love this particular person. I will say that I have gone to this type of person many times because this person will give you a cultural framework for understanding the message that is being interpreted. This person gives you the background and framework of the person's culture and how this is impacting their health decisions and access to the healthcare system.

Then, there is the clarifier. I like this role as well. In this case, the interpreter explains or makes what we call word pictures of terms that have no linguistic equivalent or whose linguistic equivalent will not be understood by the patient and then checks for understanding. As I translate materials, some phrases have no equivalent in other languages. You have to use something to describe what this activity or what this term means. We have a lot of jargon in our industry so we want to make sure that everything is understood.

Again, in the healthcare setting, the preferred role for an interpreter is that of the conduit. 

Child Interpreters

• The HHS Office for Civil Rights discourages the use of minors
  • Role reversal
  • Editing
  • Mistakes

(Kaiser Permanente, 2006)

I alluded to this already, but child interpreters can create a lot of problems. This practice is highly discouraged. Many negative consequences have occurred with the use of children. The use of minors in healthcare interpreting is discouraged. It is because of the role reversal. The child ends up having to process information and provide support for the parent, when in fact it should be the other way around. A child may intentionally leave out information to spare parents from suffering, and that creates a significant burden on the minor child. There can also be mistakes. There is no guarantee that that child will truly understand the intended message even when they say they do. My personal take is that even older children of mom or dad will sometimes edit out information. They do not make mistakes necessarily, but they do not give the full picture to mom or dad because they are trying to spare them some of that information. This does not always occur. 

Triadic Interview

• Between you, the patient, and the interpreter
• Face the patient
• Speak directly to the patient
• The interpreter should remain unobtrusive
• Prior to the session, meet with the interpreter to clarify the purpose of the visit, establish ground rules, acceptable roles

As we are talking more about interpreters, recognize that if you are using an interpreter in your session, you are conducting what we call a triadic interview between you, the patient, and the interpreter. You always have to go back to the fact that this is your session with the patient. This is not your session with the interpreter. You need to be face-to-face and speak directly to the patient. You are not speaking to the interpreter. The interpreter should remain unobtrusive. Before your session, ideally, you should meet quickly with the interpreter to clarify the purpose of your visit and the purpose of the intervention. Why are you here today? What are you trying to get out of the session? Establish the ground roles and how it is all going to go down before you get into that session.

Keep in Mind

• Interpreter and patient speak the same language and dialect
• Give the interpreter a brief summary of the patient
• Establish, with the interpreter, goals for the session
• Insist on sentence-by-sentence interpretation
• Explain that the interpreter is not to answer for the patient
• Invite the interpreter to interrupt or intervene as necessary to ensure understanding
• Document the name of the interpreter in the notes
• Ask the interpreter to teach you to correctly pronounce the patient's name

Here are a few things that you want to keep in mind as it relates to that. Make sure the interpreter and the patient speak the same language with the same dialect. You are going to give the interpreter a brief summary of the patient as we are going to assume that they do not know them. We are going to give them a summary. If they do know them, then maybe you do not need to do that. Again, we establish with the interpreter the goals for the session. You need to insist on a sentence by sentence, word for word interpretation. You do not want to give your whole spiel and then they summarize it. It does need to be sentence by sentence. We also need to explain that the interpreter is not to answer for the patient, but instead convey the message that we just conveyed, get the answer from the patient, and then convey that directly back. Say to the interpreter, "Feel free to interrupt, intervene, or do whatever is necessary throughout the course of this session to make sure that you understand what it is that I'm saying to you so that you can adequately convey it."

It is important if you are going to use an interpreter for any kind of documentation that you use the name of the interpreter and any sessions that they sat in on. You may even have to go so far as to ask the interpreter to teach you how to correctly pronounce the patient's name. And, remember that you as the healthcare provider, not the interpreter, are responsible for the interview. You are conducting this session so that person should not be overtaking it.

• Speak slowly and clearly use simple and straightforward language, and avoid metaphors, jargon, and slang
• Clearly explain medical terminology
• Allow the interpreter to ask open-ended questions to clarify what the patient says
• Allow the patient time for questions and clarifications
• Be aware of your own attitudes and shortcomings
• Verify a patient’s understanding by having them repeat what they are to do and why

Speak slowly and clearly. Go back to what we talked about at the beginning. Use clear, simple, straightforward plain language. Avoid metaphors, jargon, and slang as it is difficult to translate that. Clearly explain medical terminology and allow the interpreter to ask open-ended questions. Allow the patient time for questions. I think it is essential to be aware of your own attitudes and shortcomings. This is where your cultural competence comes into play. Make sure that you are not bringing any sort of attitudes or stereotypes to the triadic. And then, of course, verify the patient's understanding. Have them repeat back to the interpreter what they are to do and why or have them demonstrate it to you so you can get a visual and know that they have in fact understood.

Readability Tools

Statistics: Do You Know?

• 75 out of 100 Americans can read at the 6th-grade reading level without difficulty
• Readability score
  • 4th to 6th grade
    • Readable by most adults
  • 7th to 8th grade
    • Readable by half or more adults
  • High school and above
    • Readable by few adults

Did you know that 75 out of 100 Americans can read at the sixth-grade reading level without difficulty? What does that mean? Sixth-grade reading level and no higher is what that means for 75% of Americans. A fourth to sixth-grade reading level is readable by most adults, and a seventh to eighth-grade reading level is readable only by about half or more adults. A high school and above is readable by few adults. I know I am talking to a group of professionals here. I am going to assume that the vast majority of your communication, written, or verbal is probably at a high school level and above. However, for the general population, we have to figure out what level they are at.

Clinician Role

• We need to provide education to our clients
• We must be mindful of clients’ literacy skills, including reading ability and comprehension
• We can formally assess reading ability
• Can informally discuss with clients their previous level of schooling, educational achievement, and perceived reading ability

Let's go back to the clinician role. Why is this important? Reading is important because we are providing education to our clients. We have to provide education so that they are involved in treatment decisions. They follow our treatment plan and our recommendations, and a lot of that is in writing. We have to be very mindful of literacy skills, including their reading ability and comprehension.

We can formally assess their reading ability. There are some very quick reading assessments. Many of these are available out in the public domain and free of charge. This can help you to figure out how to develop materials. 

We can also informally discuss their previous level of schooling and their perceived reading ability. There is nothing wrong with that. I think about the Mini-Mental State Exam (MMSE). I do not know if that is a familiar tool to you or not, but it is a cognitive assessment. One of the questions asks, "How far did you go in school? How are you at math?" If we ask this of every single person that we talk to then we are not creating any stigma or shame. We are not isolating a group of people. This can allow us to be the best clinicians that we can be and develop tools that are going to be useful and helpful to the clients whom we serve.

Common Readability Tools

• Fry Readability Formula
• The Flesch-Kincaid Grade Level  Readability Formulas
• Microsoft Word

There are a few common readability tools, and they are listed here. 

Fry Readability Formula.

• Assigns an approximate grade-level reading to a passage of text
• The formula depends on the vocabulary and sentence structure of the text, not the organization or content
• Grade reading level is found by plotting the average number of sentences and syllables on a graph
• The graph measures reading levels from 1st grade to college years

The Fry Readability Formula is available to you in the public domain. You get a passage of text and put it into this tool. It assigns an approximate grade level of reading to a passage of text. All of these formulas depend on the vocabulary and the sentence structure of that text to assign a grade level. It is not the organization of the content. We will talk a little bit about organization and content in just a little bit. These tools just look at vocabulary and sentences. The grade reading level is found by plotting the average number of sentences and syllables on a Fry Readability Graph. The graph measures reading levels all the way from first grade up to college level. This is a way for us to assess the health literacy level of education materials, which can then be modified to fit the recommended reading level of the client based on their health literacy assessment. We want to make sure that the client can truly understand what it is that we are trying to impart to them.

Flesch-Kincaid Grade Level Readability Formula.

• Uses 7 different popular readability formulas to calculate the average grade level, reading age, and text difficulty of your sample text
• Considered one of the oldest, yet most reliable readability formulas

Here is the website that you can use: www.readabilityformulas.com

Another one is the Flesch-Kincaid Grade Level Readability Formula. This uses seven different popular readability formulas to calculate the average grade level, the reading age, the text difficulty, et cetera. Again, you dump in the sample text, and it will give you that reading level. It is one of the oldest formulas, but it is also incredibly reliable. Below is a sample text.

“The rate of medical complications following hip replacement surgery is extremely low. Serious infections, such as a hip joint infection, occur in less than 2 percent of patients. The most common cause of infection occurs when bacteria enter the bloodstream during dental procedures, urinary tract infections, or skin infections. After your surgery, you should take antibiotics before having any dental work or surgical procedure performed.  Blood clots in the leg veins or pelvis are the most common complication of hip replacement surgery. These clots can become life-threatening if they move to the brain, lungs, or heart. However, your orthopedic surgeon will have a blood clot prevention plan that includes medication and support stockings. If you do experience any symptoms of blood clots, you should call your surgeon immediately. Your doctor and nurse will discuss what symptoms to look for.”

I found this in a handout related to hip surgery that was online and originated in California. It was published for patients receiving hip surgery at this hospital. I guarantee every one of you understood what this says. There are definitely some words in there maybe that are a little bit higher level. The sentence structure maybe is a little bit higher level. This is the pamphlet that this hospital was distributing to their patients. I ran it through the Flesch-Kincaid readability formula and no shocker, it came up at an 11th-grade level. I then went back to a different segment that was also at an 11th-grade level. I rephrased it and here is the edited example.

“Most people who have hip surgery have less pain.  They can get back to doing things they need to do -- like getting dressed, bathing, and walking.  After surgery, you will not be allowed to do certain things like play certain sports or jog.  Before surgery, you need to see your doctor who will tell you if surgery is safe for you.  You will be in the hospital for surgery and it will only take a few hours.  You will usually stay in the hospital for a few days. After surgery, you will feel pain in your hip. The nurses will give you something to help with the pain. Exercise is important and you need to start moving as soon as you can.”

When I ran this one through the Flesch-Kincaid Readability Formula, I got a fifth-grade level. As I noted, a fourth to sixth-grade level is readable by most adults. This means it will be readable by at least 75% of adults. That is pretty decent. You are going to miss out on 25%, but we will talk in a minute about what you might need to do for those individuals.

Microsoft Word.

• Includes a feature providing reading ease statistics:
  • Comprehensive counts
    • Words
    • Paragraphs
    • Characters
    • Sentences

Many of us use Microsoft Word or some other type of program similar to that in our day-to-day life with patient education materials. There is a feature within Microsoft Word that also includes reading ease statistics. This gives you a comprehensive count for words, paragraphs, characters, and sentences.

• Averages
  • Sentences per paragraph
  • Words per sentence
• Readability level
  • Passivity
  • Flesch-Kincaid level

It also gives you an average number of sentences per paragraph and an average number of words per sentence. We will see on an upcoming slide why this is so important. I have some screenshots on the next slide so you can kind of see where that is (Figure 5). 

Figure 5. Screenshot to show where Microsoft Word tools are located.

If you go under your options where spellcheck is, you can see where my arrow is pointing at the very last bullet point. This is readability statistics. You can choose the writing style and what have you. The next one shows spelling and grammar. If you go to that review and you already have that box toggled, you can highlight a passage of text or even a whole document. By clicking on spelling and grammar, you can look for commas and punctuation (Figure 6).

Figure 6. Screenshot showing where the readability statistics are located.

You can see words, characters, et cetera. If you go down to the bottom, that is your passivity level. Remember as we just said, you are communicating as you are educating. As you are talking to your patients and developing materials, you want to develop those in an active voice, not a passive voice. It needs to be active and how you would normally speak. This is what that parameter is showing. 

There is also a Flesch Reading Ease and a Flesch-Kincaid Grade Level. The Flesch Reading Ease is on a percentage level, and it also gives you a Flesch-Kincaid Grade Level. I love these options. As you are creating materials, like home exercise programs or whatever, you can use these tools to assess their readability. Using these tools, you may have to adjust the materials if needed.  

Health Literacy Assessment Tools

Health literacy assessment tools are also available in the public domain. They are all in English, but some have been translated into other languages as well.

Test of Functional Health Literacy in Adults (TOFHLA)

• Measures functional literacy using real-life health care materials including patient education information, prescription bottle labels, registration forms, etc.
• Assesses numeracy and reading comprehension
• Total of 67 items
  • Numeracy includes 17 items
  • Reading comprehension includes 50 items.

The first test is the Test of Functional Health Literacy in Adults or the TOFHLA. This measures the functional literacy level of patients using real-life healthcare materials. You give the patient information about a specific health type of situation or prescription bottle labels. They are asked to read a prescription label and answer questions about that. There are sample registration forms, instructions for diagnostic tests, instructions for appointments, and that sort of thing. They are asked to read and then answer questions about these items. This assesses two main constructs numeracy and reading comprehension. There are a total of 67 items. The numeracy scale looks at reading and understanding numbers. There are 17 items for that area, and then the reading comprehension has 50 items. This shows how well a patient can read and understand healthcare-related passages.

• Two additional versions of the TOFHLA
  • TOFHLA-S: Spanish translation
  • S-TOFHLA: Short form

There are two additional versions of the TOFHLA. I do not know why they named them as such because it sometimes confuses me. The TOFHLA-S is a validated Spanish translation, and then there is the S-TOFHLA, which is the short form of this. The original TOFHLA, off the top of my head, takes about 25 or so minutes to administer. The short form takes about 12 minutes to administer.

Rapid Estimate of Adult Literacy in Medicine—Short Form (REALM-SF)

• 7-item word recognition test
• A quick assessment of patient health literacy
• Validated and field-tested
• Excellent agreement with the 66-item REALM instrument

The next one is the REALM, and this is the REALM short form. There is also a REALM longer form that gives an estimate of adult literacy in medicine. I love the short form as it takes just a couple of seconds to administer.  It is a seven-item word recognition test that provides you with a super quick but valid assessment of someone's health literacy.

• Behavior _____
• Exercise _____
• Menopause _____
• Rectal _____
• Antibiotics _____
• Anemia _____
• Jaundice _____

You show the client these words on a piece of paper and say, "Please read me these seven words," and you check how many they got right. Scoring is very easy as you can see in Figure 7.

Figure 7. Rapid Estimate of Adult Literacy in Medicine—Short Form (REALM-SF) Grade Range.

If they get none correct, they are probably at a third-grade reading level or below. What that means for you as a clinician is they are not going to be able to read even the lowest literacy materials. Even if you have materials developed for the 5th-6th grade reading levels, they may not be able to read those. You may need to completely change how you educate and communicate with them. Perhaps, you might choose to educate orally, use illustrations or videotape with say YouTube clips.

If they get one to three of the words correct, they are at a 4th-6th grade reading level, and they are going to need those low literacy materials. They may not, however, be able to read prescription bottles or prescription labels. You may need to do some additional education there if it is part of your treatment plan.

If they get four to six words correct, they are probably at about a 7th-8th grade level. They are not going to struggle with a lot of patient education materials. However, as I said before if you give them the low literacy materials, they are not going to be offended by it.

If they get all seven, they are at a high school level and are probably set. They should be able to read most of the patient education materials that are out there or in development.

The Newest Vital Sign

• Quickly and simply assess a patient’s health literacy skills
• Administered in 3 minutes
• English and Spanish
• Uses ice cream nutrition label for review and questions

The Newest Vital Sign is reasonably new. It was designed to quickly and simply assess a patient's health literacy skills. Hopefully, some of you are already familiar with it. This is also available in the public domain, and it is free of charge. It can be administered in three minutes. What happens is the patient is given a specially designed ice cream nutrition label to review, and then we ask them a series of questions about it. Based on the number of the correct answers that they get, we can assess what their health literacy level is and then adjust how we communicate with them.

• Administration
  • Administer at the same time that other vital signs are being taken
  • Ask the patient to participate
  • “We are asking our patients to help us learn how well patients can understand the medical information that doctors give them. Would you be willing to help us by looking at some health information and then answering a few questions about that information? Your answers will help our doctors learn how to provide medical information in ways that patients will understand. It will only take about 3 minutes.”

Why is it called The Newest Vital Sign? It was set up in a way such that a nurse or any other trained staff like a respiratory therapist, could administer it at the same time they are taking vitals like blood pressure, pulse ox, and respirations per minute. You ask the patient to participate. This is the language that comes directly from the assessment. We ask them this, "We're asking our patients to help us learn how well patients can understand the medical information that doctors give them. Would you be willing to help us by looking at some health information and then answering a few questions about that information? Your answers will help our doctors learn how to provide medical information in ways the patients will understand, it will only take about three minutes." Again, this is taken directly off the tool.

• Administration
  • Hand the nutrition label to the patient
  • Retain label throughout the administration
  • Refer to label as often as needed
  • Asking the 6 questions, one by one, giving the patient as much time as needed to answer
  • No maximum time allowed – the average is 3 minutes
    • If struggling with the first or second question after 2 or 3 minutes, likely has limited literacy and assessment can stop

You then hand the nutrition label to the patient. The patient can and should retain the nutrition label throughout the administration of the entire Newest Vital Sign, or the NVS. The patient can also refer to the label as often as they need to throughout the entire test. You ask the six questions one by one. You give the patient as much time as he or she needs to refer to that nutrition label to answer the questions. And, there is no maximum time allowed to answer the questions. The average time needed to do all six of the questions is about three minutes. However, if the patient is still struggling with the first or the second question after a few minutes, the patient likely has limited literacy, and you can probably just stop the assessment.

• Administration
  • Ask the questions in sequence
  • Continue even if the patient gets the first few questions wrong
  • If #5 answered incorrectly, do not ask #6
  • With 4 correct responses, stop -- patient has adequate literacy
  • Do not prompt
  • Do not show the score sheet to patients
  • Do not tell patients if they have answered correctly or incorrectly

You are required to ask the questions in a sequence, and you are going to continue the test even if the patient gets the first few questions wrong. However, and again this will make more sense when we start to ask the questions if the patient gets number five wrong you do not move to number six. You can stop asking the questions if the patient gets the first four questions correct. 

With four correct responses, the patient almost certainly has adequate literacy. You cannot prompt a patient who cannot answer a question because as with any standardized assessment, prompting could jeopardize the accuracy of the test. You just need to say, "No big deal. We're just going to go on to the next question." You also cannot show the score sheet to the patients.

When you look at this assessment, it is an entire assessment booklet, and the score sheet shows the answer. If they ask to see it, you say, "I can't show it to you because it contains the answers, and showing the answers spoils the whole point of asking the questions, does it not?" You also cannot tell them if they answer correctly or incorrectly. They are going to ask things like, "How did I do?" "Am I doing okay?" "How's it going?" You just say, "I can't show you the answers until you are finished, but for now you are doing just fine. Let's go on to the next question." You need to be encouraging without giving them the answers.

As you score this, this is why that four questions make sense, you give them one point for every correct answer for a maximum of six points (Figure 8).

Figure 8. Scoring for The New Vital Sign.

With a score of zero to one, there is a high likelihood of 50% or more of limited health literacy. Again, your takeaway here is you need to go back and develop your materials in a way that is going to be a sixth grade or below and communicate in plain language. A score of two to three suggests the possibility of limited literacy. They are probably not going to be offended if you give them low literacy materials, but they may not need them either. A score of four to six almost always indicates that the person has adequate literacy. Again, if they get the first four questions right, you do not technically have to ask questions five and six. I like to complete the whole test, but if they get the first four, chances are pretty good that they have adequate literacy.

• Why an ice cream label?
  • Analyzing a nutrition label requires the same skills to understand medical instructions
    • Understanding and application of words (prose)
    • Numbers (numeracy)
    • Forms (documents)
  • Whether it’s a food label or medical instructions, one needs to:
    • Remember numbers/make calculations
    • Identify potentially harmful ingredients
    • Make decisions about actions based on information

Why does an ice cream label work as a predictor of the ability to understand medical instructions? A patient's ability to read and analyze a nutrition label requires the same types of analytical and conceptual skills that are needed to understand and then follow a provider's medical instructions. There are three different and specific types of skills here. An understanding and application of words are prose literacy. The application of numbers, which we have been talking about throughout the course, is numeracy literacy. And then, there are forms or documents.

Recent research in the "American Journal of Preventive Medicine" has shown that poor comprehension of food labels correlates very highly with low-level literacy and numeracy skills. Whether they are reading a food label or following medical instructions, they need to be able to remember numbers and make mathematical calculations. It could be figuring out their caloric intake for the day. Or, figuring out on a sliding scale, what insulin dosage they need. Their physician may say to stop your medication on a certain date before a procedure. They need to remember those numbers and make calculations. It might be identifying and being mindful of different ingredients that could be potentially harmful to them. They need to make decisions about their actions based on the given information. Do I hold my meds? Do I take my meds? Do I do my breathing treatment? Do I not?

Let's go back through those three examples before we do the test together.

• Prose Literacy Example
  • Clinical example
    • The patient has scheduled some blood tests and is instructed in writing to fast the night before the tests
  • Ice cream label example
    • The patient needs this skill to read the label and determine if he can eat the ice cream if he is allergic to peanuts

For the prose literacy example, the patient has scheduled some blood tests and is instructed in writing to fast the night before they take those tests. In that case, the patient would need that same skill to be able to read the label and determine if that person can eat the ice cream if they have a peanut allergy. It is the same type of literacy skills that would be utilized there.

• Numeracy Example
  • Clinical example
    • A patient is given a prescription for a new medication that needs to be taken at a certain dosage twice a day
  • Ice cream label example
    • The patient needs this same skill to calculate how many calories are in a serving of ice cream

A numeracy example would be if a patient is given a prescription for a new medication that needs to be taken at a very specific dosage, and they have to take it twice a day. For the ice cream label, the patient needs that same skill to calculate how many calories are in a serving of ice cream. 

• Document Literacy Example
  • Clinical example
    • The patient is told to buy a glucose meter and use it 30 minutes before each meal and before going to bed. If the number is higher than 200, he should call the office.
  • Ice cream label example
    • The patient needs this skill to identify the amount of saturated fat in a serving of ice cream and how it will affect his daily diet if he doesn’t eat it

Then, there is document or forms literacy. In the clinical example, the patient is told to buy a glucose meter or a glucometer and use it 30 minutes before each meal and before going to bed. If the number is higher than 200, he should call the office, or higher than around 120 to 140 to do something with the insulin dosage. The parallel on the ice cream label is to identify the amount of saturated fat in a serving of ice cream, and then determine how that will affect his or her daily diet if they do not eat it.

We are going to have a little fun now. Take out a piece of paper, and as we go through the questions on the next slide, you can determine how well you do. Figure 9 shows the ice cream label that you are going to give to the patient.

Figure 9. Ice cream label.

• Questions
  • 1.If you eat the entire container, how many calories will you eat?
    • Answer: 1,000 is the only correct answer
  • 2.If you are allowed to eat 60 grams of carbohydrates as a snack, how much ice cream could you have?
    • Answer: Any of the following is correct: 1 cup (or any amount up to 1 cup), half the container. Note: If the patient answers “two servings,” ask “How much ice cream would that be if you were to measure it into a bowl?”
  • 3.Your doctor advises you to reduce the amount of saturated fat in your diet.  You usually have 42 g of saturated fat each day, which includes one serving of ice cream. If you stop eating ice cream, how many grams of saturated fat would you be consuming each day?
    • Answer: 33 is the only correct answer
  • 4.If you usually eat 2,500 calories in a day, what percentage of your daily value of calories will you be eating if you eat one serving?
    • Answer: 10% is the only correct answer
  • READ TO SUBJECT: Pretend that you are allergic to the following substances: penicillin, peanuts, latex gloves, and bee stings.
  • 5.Is it safe for you to eat this ice cream?
    • Answer: No
  • 6. (Ask only if the patient responds “no” to question 5): Why not?
    • Answer: Because it has peanut oil.

Follow along and write down your answers. Question 1: If you eat the entire container of ice cream, how many calories will you eat? Question 2: If you were allowed to eat 60 grams of carbohydrates as a snack, how much ice cream could you have? Question 3: Your doctor advises you to reduce the amount of saturated fat in your diet. You usually have 42 grams of saturated fat each day, which includes one serving of ice cream. If you stop eating ice cream, how many grams of saturated fat will you be consuming each day? Question 4: If you usually eat 2,500, what percentage of your daily value of calories will you be eating if you eat one serving of ice cream? Pretend you are allergic to the following substances: penicillin, peanuts, latex gloves, and bee stings. Question 5: Is it safe for you to eat this ice cream? Yes or no? And then depending on what you answered, if you said, "No," why not? That is the whole test. As an aside, I read those to you verbally. This is ideally how you should do this. I suspect that if you had to, you could put these questions on like a cue card or something for the person to read them if that was necessary. I would need to confirm that with the test booklet.

Let's go back through the questions. Question one, if you eat the entire container, how many calories will you eat? The answer here is 1,000. This is the only correct answer because there are four servings and each serving is 250 calories. If you were allowed to eat 60 grams of carbohydrates as a snack, how much ice cream could you have? Any of the following answers would be correct. You could say one cup or any amount up to one cup, or half the container. If the patient were to say two servings, you need to go back to them and ask, "How much is a serving?" "How much ice cream would that be if you measured it out and you put it into a bowl?" Question three, your doctor advises you to reduce the amount of saturated fat in your diet. You usually have 42 grams of saturated fat each day, which includes one serving of ice cream. If you stop eating ice cream, how many grams of saturated fat would you be consuming each day? The answer is 33 grams of saturated fat. If you usually eat 2,500 calories in a day, what percentage of your daily value of calories will you be eating if you eat one serving of ice cream? Again, the only answer is 10%, because it is 250 calories per serving. Lastly, with the allergy question, the answer to that is no. If they answer, "No," you ask them why. The answer is no as there is peanut oil in this ice cream.

Again, you ask all the questions in order. If they get question five wrong, you do not even ask question six. If they answer, "Yes," it is safe for them to eat it, they clearly did not understand that there was peanut oil in the ingredient list, and they probably should not be eating it.

This is a great test that was developed by one of the drug manufacturers. Again, it takes three minutes to administer it, and you immediately know with any one of these tasks reading comprehension and the literacy level of the client. It just helps you to put everything that you are doing with them into focus at a level that is going to be meaningful, useful, and get your point across. It also increases health outcomes.

Recap of the Assessments

Figure 10 is a recap of those assessments and the references for each of them.

Figure 10. Chart showing assessment information.

There is the TOFHLA. It takes 22 to 25 minutes to administer that. The short form of the TOFHLA takes about seven minutes. The short form of the REALM, that we just talked about, with the seven words takes one to two minutes. The full 66 item test takes about 25 to 30 minutes. Lastly, The Newest Vital Sign, from Pfizer, is about three minutes long. These tests are available for you to get the information that you need.

Effective Verbal and Written Communication

Ask Me 3

• 1.What is my main problem?
• 2.What do I need to do?
• 3.Why is it important for me to do this?
  • Intended to help patients become more active members of their health care team
  • Improve communication
  • Develop patient-centered goals

We talked about the Ask Me 3 earlier on. This is a great educational program that encourages our patients and families to ask three specific questions of their providers to help them understand their health conditions a little bit better. It also helps them to understand what they need to do to not only stay healthy but also to be compliant with any sort of healthcare regime or instructions. What is my main problem? What do I need to do? Why is it important for me to do this? We flip-flop those. Remember, when we talked about them before it was, "What problem are you bringing to me?" "What do you want from me to do this?" And, "Why is it important to you?" This is flip-flopping this narrative and helps patients become more active members of their healthcare team. It is a critical platform that improves communications between them and us. More than anything, it helps us to develop those patient-centered goals. If the goal is not centered on the patient, meaningful, or motivational to them, what is the point?

Teach Back

• The client repeats the information in his or her own words to show understanding
• Useful to assess YOUR OWN communication skills with the patient
• For example: 
  • Tell me what you have understood
  • Can you show me how you are going to do your exercises?

We have talked about teach back before. We probably intuitively do this, but we do this to make sure that the client understands. They repeat the information back to us in their own words to show understanding. This helps us to assess our communication skills with the patient. Did I do my job? Did I get my point across? "Tell me what you understood. I want to make sure that I've explained it thoroughly to you?" "What I would like you to do for your respiratory home program. Tell me how you're going to do your exercises as it relates to your breathing?" Or, "How are you going to do your plan at home? Can you show me how you're going to do those exercises?" You are looking to see if you got your point across and how are they doing with it. If their return demonstration is not at 100%, then you have a little bit of work to do. You may even have to go back to the drawing board and figure out how to parlay that education a little bit differently.

Content and Organization

• Ensure the purpose is immediately outlined and clear to the reader
• Ensure content is balanced, accurate, and up-to-date
• Include a publication or revision date on all materials
• Provide how-to information of relevance to the reader’s situation
• Use subheadings, question and answer format, bullet points, and summaries

Content and organization are critically important. Make sure that the purpose is immediately outlined and clear to the reader. The purpose of written documents should not be hidden at the end of the first paragraph or the end. It should be smack dab right there at the very beginning. You want to make sure that the content is balanced, accurate, and up to date. You may even want to put a reference date in the footer of your document so you know the last time that it was updated. Was it updated in 2003 or was it updated in 2020? Provide how-to, relevant information, and keep out the extraneous. Use subheadings to help you to organize. A Q&A format is wonderful. You can also use bullet points and short little summaries to break down the information into small and reasonable chunks.

Layout and Illustrations

• Use ample white space
• Use serif typefaces, minimum 12-point font size, good contrast between text and background
• Avoid capitalizing all letters in words, italicizing, and the use of Roman numerals
• Use instructive, culturally appropriate illustrations but only if they augment the message
• Position illustrations next to the text they refer to
• Clearly label all illustrations

When you look at your layout and illustrations, there should be ample white space. It is very distracting if there are tons and tons of words on a slide or a piece of paper. Ues serif typefaces. It is also good practice to use a minimum 12 point font size with good contrast between the text and the background. Some people will try to use white letters on a black background, and while that has good contrast, it is very difficult for people to read. Black on white is always going to be best. Avoid capitalizing all the letters in the words, italics, and the use of Roman numerals. If you use illustrations, make sure that they are instructive, culturally appropriate, and not offensive. Only include them if they actually augment the message. If not, they probably do not need to be there. And if you are going to use photos or illustrations, make sure that they are next to the text that they refer to. And of course, label all of your illustrations so that somebody knows what that illustration is about.

Language

• Aim for 5th to 6th-grade reading level
• Use clear, simple, common language, and short sentences and words
• Avoid jargon and define specialist terminology
• Write in active voice and second person

We have talked about language already quite a bit. Aim for the fifth to sixth-grade reading level with a simple, clear common language and short sentences. You want less than 10 words per sentence. Avoid jargon and special terminology. And, write in an active voice.

Writing Tips for All Readers

• Use plain English
• Make every word count
• Be clear and brief
• Use positive words
• Short lists or bullet points, not long sentences
• Concrete, familiar words
• Charts and pictures
• One or two-syllable word when possible

We already talked about plain English. These are just writing tips for all readers. I think that if you just do this consistently, no one is going to be offended. Everyone is going to be helped. Make every word count and cut out the unnecessary fluff if you do not need it. Be clear, be brief, and use positive words. Instead of saying, "Don't do this," instead say, "Do this." Use positive words, short lists, bullets, short sentences, and concrete and familiar words. If you use abstract words, sometimes the translation gets lost. Use very familiar words unless you have to use a very technical term. Charts and pictures are very helpful. Using one syllable or even two-syllable words when possible is going to be better. 

• Follow grammar rules:
  • Subject and verb together if possible
  • Vivid, active verbs
  • Active voice
  • Short, simple sentences
  • Personal pronouns
  • Few – ing words
  • Few prepositional phrases

Follow grammar rules. I am probably the only person in the world who uses proper grammar and punctuation in a text message. Use your subject and your verb together, and make them part of the same sentence. Vivid, active action verbs are better than passive. Use personal pronouns like we and you. Use few -ing words. Keep out those prepositional phrases. And when possible, do not end your sentence with a preposition.

Text Appearance Matters

• Text greatly affects readability
• Use font sizes between 12 and 14 points
• For headings, use a font size at least 2 points larger than the main text size
• Use fonts with serifs
  • Serifs are the little “feet” on letters

Text greatly affects your readability. Choose the appropriate font style and size. It is really important to create health communication materials that are easy for our patients to read. Font sizes should be between 12 and 14 points. If someone has low vision on top of other things, you might want to go a little bit bigger or use low vision materials. Anything less than 12 points can be too small for individuals. If you have headings, you are going to use a font size that is at least two points larger than the main text. We want to use serif fonts as they are easier to read than sans-serif fonts. The serif makes the individual letters more distinct and easier for our brains to quickly and easily recognize. The serifs are the little feet that are on letters. If you are not sure if something is a serif or not, go back to Microsoft Word. This is not certainly a plug for them, but if you look at your font list, it will say sans-serif. Sans-serif means it does not have feet. For example, Times New Roman font has the feet.

• Do not use FANCY or script lettering
• Use both upper and lower case letters
• Use grammatically correct punctuation
• Use bold type to emphasize words or phrases
• Limit the use of italics or underlining
• Use dark letters on a light background

Do not use fancy or script lettering. I know it looks really fun, but it is very difficult to read. Make sure that you use both upper and lower case letters just as you would with any sort of paragraph that you are writing or reading. Do not use all caps. Make sure that you are using grammatically correct punctuation like commas, semi-colons, and periods. If you do want to emphasize a word or emphasize a phrase, use bold type to do that as italics and underlining are very difficult to read. You want to avoid those. Keep it simple. And I think simple plain language, go back to that. That's exactly what we need it to be.

Summary

This brings us to the conclusion of this session. Thank you so much for listening. My contact information is on the final slide. If you have any questions or would like additional information, do not hesitate to reach out. 

References

Available in the handout.

Editor’s note: This text-based course is a transcript of the webinar, U.S. Healthcare Services & Diverse Populations, presented by Tasha Perkins Holmes, MOT, OTR/L.

Learning Outcomes

After this course, participants will be able to:

• Identify some of the barriers to healthcare in diverse populations.
• Identify ways to be more inclusive when providing healthcare services.
• Identify ways to support co-workers in a healthcare setting.

Introduction

Thank you everyone for joining me for this presentation. We are all in a different part of our journey to providing equitable services. This has a lot to do with the way that we were brought up, the current things that we have going on in our lives, our different leisure activities like reading, and engaging in different types of activities that have an effect on the way we provide healthcare services. I want you to keep that in mind as we go through this presentation.

Limitations of This Presentation

• Does not include an in-depth look at intersectionality.
• Does not provide an exclusive list of historical/present-day events, laws, and policies that have caused and continued to perpetuate marginalization.
• Does not discuss issues faced by every marginalized group.
• Is not an exclusive list of the issues faced by the groups discussed.
• Intersectionality: the interconnected nature of social categorizations such as race, class, and gender as they apply to a given individual or group, regarded as creating overlapping and interdependent systems of discrimination or disadvantage. (www.dictionary.com)

There are limitations. It does not provide an in-depth look at intersectionality. I do feel that intersectionality plays a very big part in how people receive healthcare services, and it also affects how equitable those services are and people's experiences with them. This is not a deep dive into that. We are just beginning the conversation, advancing it, and adding on information for others. Additionally, this does not provide an exclusive list of historical, present-day events, laws, or policies that have caused and continue to perpetuate marginalization. While we will look at some historical events that have had an effect on healthcare, this is not a deep dive into those events either. It does not discuss issues faced by every marginalized group. In order to cover that, this would be longer than a two-hour presentation. Thus, it is not an exclusive list of the issues faced by the groups discussed. Please keep that in mind also as we go through these slides.

U.S. Healthcare 

I would like to start out with this quote by John Lord Dalberg-Acton. It says, "The most certain test by which we judge whether a country is really free is the amount of security enjoyed by minorities." I would like to take a minute to think about how that applies to healthcare and services provided to marginalized groups.

Here is another activity that I would like to have you think about (see Figure 1). This is a way to reflect before we get into our information.

Figure 1. Questions to ponder.

Have you ever had to correct a healthcare provider regarding your preferred pronoun? My preferred pronoun is "she." I have never had to correct a healthcare provider, and I have always been referred to as such. Have you ever been concerned that your race would negatively affect how seriously you were taken by a healthcare provider? Have you ever been reluctant to seek medical care due to your sexual orientation or your sexual identity? Have you ever been concerned about there being a language barrier between you and your healthcare provider? Have you ever missed follow-up healthcare services due to financial reasons? Have you ever experienced physical challenges that made it difficult to obtain healthcare services? Lastly, have you ever been concerned about how you are going to physically get inside of a building in order to see your healthcare provider? Keep these all in mind while we are going through the slides.

Timeline Activity-Personal Info 

We are going to complete a timeline activity during this talk. You will need something to write with and something to write on.

Your Timeline

• The year one or both of your parents were born.
• The year you were born.
• The year you graduated high school.
• The year you graduated from college.
• The year that you graduated with your degree in healthcare.
• This year.

You will either make a vertical or a horizontal line, whichever way you choose, and you are going to put tick marks (in chronological order) for each of the items above. Please take a minute to add those dates to your timeline.

Timeline- Civil Rights Act of 1964

• The Civil Rights Act of 1964 outlawed discrimination on the basis of race, color, religion, sex, or national origin, required equal access to public places and employment and enforced desegregation of schools and the right to vote.

The first thing I would like you to add to your timeline after you have added your personal history is the date 1964. Next to that, I would like you to write, "The Civil Rights Act." The Civil Rights Act outlawed discrimination on the basis of race, color, religion, sex, national origin, and it required equal access to public places and employment. It also enforced the desegregation of schools and provided the right to vote. It sounds like the Civil Rights of 1964 probably fixed all of the issues that were going on leading up to 1964. So at that point, we should have seen equitable care in healthcare, schools, and employment.

Let's think about this for a minute. How do you think this affected attitudes at newly integrated hospitals as an example? What happened the day after the law was signed? Change does not happen overnight. Let's think about both the attitudes of the people who were previously working in the segregated hospitals and patients who were currently being segregated into the hospitals. How do you think the attitudes may have changed from one day to the next? What were people thinking and feeling when they heard that the Civil Rights Act was now a law? How do you think this affected the attitudes of professionals who were teaching future healthcare providers? On Monday, we have segregation, and on Tuesday, it says that integration is what needs to happen. Do you think there were discussions about how this was going to affect the way they were going to provide healthcare? Do you think there were discussions on how to make sure healthcare was going to be equitable? Do you think there were action plans for how to help these hospitals or schools integrate? How patient-centered do you think mental health care services were at the time? Do you think that they were looking at intersectionality? "Let's think about how these patients are feeling since they may have been segregated previously?" 

• Reflection
  • How do you think this affected attitudes at newly integrated hospitals?
  • How do you think this affected the attitudes of professionals teaching future healthcare providers?
  • How patient-centered do you think mental health services were at the time?

This is a list for you to reflect on as we go through some of these slides.

Barriers to Healthcare 

There are a lot of different barriers to healthcare.

• People may not receive care because of distrust of the healthcare system, language barriers, or the cost of missing work.
• Racism, stigma, and systemic inequities undermine prevention efforts, increase levels of chronic and toxic stress, and ultimately sustain health and healthcare inequities.
• COVID-19 in Racial and Ethnic Minority Groups. Retrieved from https://www.cdc.gov/coronavirus/2019-ncov/need-extra-precautions/racial-ethnic-minorities.html

People may not receive care because of distrust of the healthcare system, language barriers, or the cost of missing work. This is a huge deal for some people. Racism, stigma, and systemic inequalities undermine prevention efforts, and they increase levels of chronic and toxic stress. This ultimately sustains health and healthcare inequities. This is information that I pulled from the CDC regarding COVID-19 in terms of racism, stigma, and systemic inequalities. This is interesting as we are in 2020 and we are still looking at these types of things.

But in 1964, there was the desegregation of hospitals. In theory, this should have provided equity in healthcare. Additionally, when we are looking at language barriers and the cost of missing work, this goes along with some of that intersectionality. Their race may be one issue, but we also may be looking at their language and lower socioeconomic class, which are other layers.

• A language barrier can be fatal if the person does not understand the medication dosage.
• A patient or patient’s parent/caregiver may have to take off from work without pay to attend therapy and/or doctor’s appointments.
• A patient or patient’s parent/caregiver may not have the money for transportation to appointments.

A language barrier is more than just inconvenient. A language barrier can be fatal if that person does not understand the medication dosage. A patient or patient's parent or caregiver may have to take off of work without pay to attend therapy and/or doctor's appointments. This also becomes a health issue if you do not have the money to take off of work and you cannot attend your follow-up appointments. This is going to be very detrimental to the health and wellbeing of that family. A patient, patient's parent, or caregiver may not have the money for transportation to go to appointments. They may not have the gas money to get to that appointment. If they have to decide between the gas money or buying food for the week, they are not going to come to that appointment. They may not be able to afford cost-share options or public transportation to get to the appointment. They may not even have a car. These are all huge barriers to getting the necessary healthcare.

• The results of a study suggest “that fear of discrimination and consequent delay of care are at the forefront of health challenges for transgender adults.”

Seelman, K. L., Colón-Diaz, M. J. P., LeCroix, R. H., Xavier-Brier, M., & Kattari. L. (2017). Transgender noninclusive healthcare and delaying care because of fear: Connections to general health and mental health among transgender adults. Transgend Health., 2(1):17-28. 

This study suggested that the fear of discrimination and consequent delay of care are at the forefront of healthcare challenges for transgender adults. The fear of being discriminated against is so strong that that person is willing to forego either mental health or a physical health treatment because of that discrimination. They are also willing to delay care that they really need because they are afraid of that discrimination. That means that discrimination is a bigger concern than what is going on with them health-wise.

Timeline-The Tuskegee Experiment Ends-1972

Here is another item to add to your timeline. In 1972, the Tuskegee Experiment ended. The Tuskegee Experiment began in 1932. You can find more information about this if you go to the CDC website or do a general search for "the Tuskegee Experiment." This was an unethical research project where a group of Black men thought that they were receiving healthcare for syphilis when in fact they were not. It took from 1932 to 1972 for this to end. 

Research & Diversity

• “Our historical notions about race have shaped our scientific research and clinical practice”. For example, experimentation on black communities and the segregation of care on the basis of race are deeply embedded in the U.S. healthcare system.

Hardeman, R. R., Medina, E. M., & Kozhimannil, K. B. (2016). Structural racism and supporting black lives—The role of health professionals. N Engl J Med, 375:2113-2115 DOI:10.1056/NEJMp1609535.

Our historical notions about race have shaped our scientific research and clinical practice. For example, experimentation on black communities and the segregation of care on the basis of race are deeply embedded in the U.S. healthcare system. Had there been more diversity in the people who were doing the research, then perhaps 1972 would not have been the end of the Tuskegee Experiment. They would have had a whistleblower prior to then. Or, maybe in 1932, they would not have even experimented on this group of black men because someone would have said that this was unethical.

• The study “demonstrates that beliefs about biological differences between blacks and whites—beliefs dating back to slavery—are associated with the perception that black people feel less pain than do white people and with inadequate treatment recommendations for black patients’ pain.”

Hoffman, K. M., Trawalter, S., Jordan, R., Axt, M. & Oliver, N. (2016). Racial bias in pain assessment. Proceedings of the National Academy of Sciences, 113(16) 4296-4301; DOI: 10.1073/pnas.1516047113. 

Another more recent experiment was done. and it took a look at racial bias, pain assessment, and treatment recommendations. There was a study published in 2016 titled, "Racial Bias and Pain Assessment and Treatment Recommendations, and False Beliefs About Biological Differences Between Blacks and Whites". This study looked at pain treatments for black Americans versus white Americans. They found that medical students still demonstrated beliefs that there were biological differences between blacks and whites, beliefs dating back to slavery. There was a perception that black people feel less pain than white people. Consequently, it was found that there were inadequate treatment recommendations for black patients' pain. Are black patients receiving less pain management control? We need to keep this in mind as we move along in the talk.

• Norming of standardized tests using diverse populations.
• Preventing a marginalized group from having their rights violated by researchers.
• Identifying research that has not been done in areas important to diverse communities.

We also want to think about the norming of standardized tests using diverse populations. This is something that is important when we are doing research. You want to get a good look at how different populations are responding to whatever stimuli you are presenting when you are trying to get to the norm. This is where the notion of culturally biased tests comes into play rather than actually looking at the function or the needs of the person that you are assessing. This is preventing a marginalized group from having their rights violated by researchers. This is another reason why healthcare research diversity is important. We do not want a repeat of what happened with the Tuskegee men. We want to identify research that has not been done in areas important to diverse communities. As we discuss different communities and their needs, we need more diversity in research because we need to identify the things that are important to them. We want to look outside of what the mainstream population needs and look at the different subsets of the population and what we can do to help them in healthcare.

I would like you to take a look at this quote by Audre Lorde. "There is no such thing as a single-issue struggle because we do not live single-issue lives." This discusses intersectionality and is important to consider. We are not single-issue people. We are multidimensional people. We have a lot of different things that contribute to our beliefs. And, we have a lot of different things that contribute to the way we provide services, as well as our patients. Our patients are multidimensional as well, too. We cannot just look at one part of a person's life and make the assumption that there are not other things that are affecting that person's life as well, which in turn, affects their healthcare.

Timeline- The Americans with Disabilities Act- 1990

In 1990, the Americans with Disabilities Act became law. 1990. That really was not that long ago. People with disabilities constitute our nation's largest minority group. It is also the most inclusive and the most diverse. We are really talking about intersectionality here. Those with disabilities include both genders, any sexual orientation, every age, different religions, different socioeconomic levels, and various ethnicities.

Intersectionality

• People with disabilities constitute our nation's largest minority group. It is also the most inclusive and most diverse: both genders and any sexual orientation; all ages, religions, socioeconomic levels, and ethnicities are represented in the "group" we call disabled.

Greaud, M. & Scherer, H. (2012). The big picture: IEPs, parents, teachers, and aides. The Agricultural Education Magazine, 84(6). 

Again, looking at intersectionality, people may have more than one issue. For example, a person may come in with an amputation, be of low socioeconomic level, and be a Muslim. Another person who has had a stroke may be black and gay. Or, you may have someone who is a Spanish speaker, has diabetes, and is Catholic. These are different things that make up a person, and these all "intersect" that may make them a part of more than just one minority gro

Timeline- Diagnostic and Statistical Manual of Mental Disorders (DSM) Removed Homosexuality- 1973

For the next date, we are jumping back to 1973. This is when the DSM removed homosexuality as a mental illness. I would like you to think for a second. If in 1972, the DSM says that homosexuality is a mental illness, but now in 1973, it is saying that it is not. Are we assuming that in 1974 that all of those people practicing in healthcare and the general public who were familiar with the DSM that had these ideas prior to 1973 were able to switch gears easily? In 1974, were they saying, "You know what? Homosexuality is not a mental illness. We should not be treating this as such." Let's think about how attitudes may have changed or not changed after that happened.

Helpful Information

• The use of a preferred name can have a positive customer service benefit in allowing for health-care staff to address the patient in a manner chosen by the patient, whether or not they elect to provide a preferred name. The use of a preferred name for transgender patients has been identified as important in providing inclusion toward a class of patients that have historically been disenfranchised from the health-care system.

Imborek, K. L., Nisly, N. L., Hesseltine, M. J., Grienke, J., Zikmund, T. A., Dreyer, N. R., Blau, J. L., Hightower, M., Humble, R., & Krasowski, R. (n.d.). Preferred names, preferred pronouns, and gender identity in the electronic medical record and laboratory information system: Is pathology ready? Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5653959/

Here is some helpful information about preferred names for a transgender woman, a transgender man, or someone non-binary. We will take a look at these a little bit later in the slides. When you are thinking about name choices and providing equitable healthcare, it is important to look at therapeutic rapport. The use of a preferred name can have a positive effect on customer service. This is allowing the healthcare staff to address the patient in a manner chosen by the patient, whether or not they elect to provide a preferred name. I have worked in different places where I have read a chart, the name might say, "John Smith," but then when I go to the room, it says he likes to be called "Al." I may not know where he got "Al" from "John," but I know that is his preferred name so that is the name that I am going to call him. The patient usually appreciates that because, although it does not say that in their chart, that is the name that they prefer to be called.

The use of a preferred name for transgender patients has been identified as important in providing inclusion toward a class of patients that have historically been disenfranchised from the healthcare system. This goes back to being so afraid of being discriminated against that you do not want to seek medical care. Then, the healthcare worker uses the name that is in the chart, and that adds another layer of angst to the person. They may say, "I prefer to be called by this name." Can you imagine the effect that that would have just by calling someone by their preferred name?

• APA endorses the use of “they” as a singular third-person pronoun in the seventh edition of the Publication Manual of the American Psychological Association.
• APA advocates for the singular “they” because it is inclusive of all people and helps writers avoid making assumptions about gender.

Retrieved from Apastyle.apa.org

Here is another piece of helpful information. The APA endorses the use of "they" as a singular third-person pronoun in the seventh edition of the "Publication Manual of the American Psychological Association." The APA advocates for the singular "they" because it is inclusive of all people and helps writers avoid making assumptions about gender. For me, this really hits home because I am that person who likes to call people by their preferred name, and I also like to call people by their preferred pronoun because I do want to build that therapeutic rapport. But at the same time, I am also that person who came from the school of thought where you do not use "they" for a singular person. You either use "he" or "she." This information is so beneficial and really hits home for me. In the past,  I used "he" instead of "they" when writing an email to someone, and it really hurt their feelings. I apologized, but I think that this was probably the straw that broke the camel's back. I was that last person that used the wrong pronoun after being briefed about the correct pronoun, and because of that, this person declined my services. Obviously, that was not my intention, but I can only imagine how that person must have felt. In an effort not to make it about me, because I have also been on the receiving end sometimes of things that have not been so kind, I asked for advice from a co-worker.  "Where can I find some information, so I don't make this mistake again?" This co-worker pointed out the APA information to me. 

Timeline- Education of All Handicapped Children Act- 1975

In 1975, the Education of All Handicapped Children Act guaranteed free and appropriate education. Once again, I just want you to think about the impact that this had for children receiving services in schools. I also want you to think about what may have happened before 1975 and then what happened in 1976. Do you think between 1975 and 1976 everything was in place and everyone had their attitudes focused on these children who were previously separated from the general education public and housed in homes and facilities? Do you think that these children were welcomed with open arms? Were the attitudes that these children deserved to be here? Was everyone welcoming?

"If we cannot now end our differences, at least we can help make the world safe for diversity." This is a quote from John F. Kennedy. What do you feel like that means in terms of healthcare? Are we making the world safe for diversity? 

Timeline- The Supreme Court Declares Same-Sex Marriage as Legal- 2015

In 2015, the Supreme Court declared that same-sex marriage was legal. 

CMS

• The Centers for Medicare and Medicaid Services (CMS) issued guidance clarifying that health insurance companies that offer spousal coverage also offer spousal coverage to same-sex spouses.

Retrieved from https://www.hhs.gov/programs/topic-sites/lgbt/accesstohealthcare/nondiscrimination/index.html

Additionally, the Centers for Medicare and Medicaid Services issued guidance clarifying that health insurance companies needed to offer spousal coverage to same-sex spouses. Now, more people were given access to healthcare. Think about some of the attitudes that prevailed with these changes.

What Can We Do?

Now I want to shift gears a little bit and talk about what we can do to help to increase equity in healthcare. There are many things that have happened in our lifetime as evidenced by that activity. How long ago were they? Have the attitudes changed since then? 

Training

• Provide training to help providers identify their implicit biases, making sure providers understand how these biases can affect the way they communicate with patients and how patients react.
• Train both providers and administrators to understand how biases can affect their decision-making, including decisions about resources.

Retrieved from https://www.cdc.gov/coronavirus/2019-ncov/need-extra-precautions/racial-ethnic-minorities.html

Training is important to help providers identify their implicit biases and understand how these biases can affect the way they communicate with patients and how patients react. This training is important for both providers and administrators to understand how biases can affect their decision-making, including decisions about resources. As we discussed previously, like in the examples of the Tuskegee men and that research project on pain, we need to put together information that looks at all of our different implicit biases. We also want to consider historical things that have happened so that we do not repeat or continue to perpetuate ideas that are incredibly outdated. The tricky thing about implicit bias is that it is not something that we are not aware of a lot of times. With implicit bias, it may be something that kind of pops up in the heat of the moment. And, we are not always aware of the things that have caused us to think a certain way. This is part of the reason why I wanted you to take a look at the timeline. Using the example of homosexuality. If you were told all throughout your schooling and life that it was a mental illness, this may have an impact on how you practice. Are you going to continue to think that that person is mentally ill on a subconscious basis? Are you going to dismiss some of the issues that they have because they are homosexual? Are you looking at the intersectionality of the fact as well? There may need to be things that you are more open to discussing. 

Also, what type of resources are you providing to your patients. If you are under the impression that everyone should speak English, then it might not be on your list of things to do to make sure that you have a form in multiple languages.

Assessments

• Consider that looking at facial symptoms is documented Eurocentrically and that you may not see a person of color with a “flushed” or “pale” face.

Think about assessments as well. Many facial features are documented Eurocentrically. You may not see a person of color or a person with a dark complexion as looking flushed or pale in the face. You may not see them as having red cheeks. Some of the assessments are not going to work the same with someone who has a darker complexion. You may miss some symptoms that may show a reaction in your patient. Also, remember assessments are normed sometimes on populations that are not diverse.

You need to make sure that the assessments that you choose are culturally appropriate for the person that you are assessing. Are they looking at the person's function or dysfunction versus looking at something that is very culturally-centered? We need to use assessments that lend themselves more to function versus assimilation into the mainstream accepted culture. An example could be an assessment based on clothing norms. For a patient or a student that is transgender, they may choose something different. Another example is judging a child on motor abilities. However, this would look different in a culture where babies are carried for the first few years of their lives. Here in America, we expect by the age of two that a child should be up and walking around independently. Are we looking more at the cultural assimilation or are we looking more at the actual function and dysfunction in the person that we are assessing? 

Assessments/Outcomes

• Considering how assessments are normed.
• Consider assessments that lend themselves to function vs. assimilation into the mainstream accepted culture.
• Consider outcome measures that lend themselves to the patient’s functional needs.
• Use interviews to get a complete picture of the patient’s/family’s needs / wants in regards to treatments.

You also want to consider outcome measures that lend themselves to the patient's functional needs. We want to consider outcome measures that are looking at what that patient actually wants and needs to do versus what we culturally or what we assume that that person should be doing. Use interviews to get a complete picture of a patient's or family's needs or wants in regards to treatments. Because once again, this is looking at equitable care in terms of providing what is cultural, patient-centered, and relevant.

Considerations for Relaying Information

• Understand that people who are not neurotypical may need information presented in a different way to increase understanding.
• Provider interpreters for IEP meetings and during discussions regarding healthcare.

People who are not neurotypical may need information presented in a different way to increase their understanding. We may need to provide interpreters for IEP meetings and during discussions regarding healthcare. The language sometimes that we use in IEP meetings, although we are supposed to really use words that the layperson can understand, we can get technical in the things that we say. It is always better to have an interpreter there to make the parents feel more comfortable and make sure that the parent is really understanding what is being said. Of course, the parent/caregiver does have the right to refuse an interpreter, but it is just making sure that things are available. You want them to be able to make an informed decision. This goes back to implicit bias. You may feel like someone cognitively cannot understand you when you speak in English; however, they are amazingly articulate in their first language. Or, you might make assumptions about the home situation because of the way parent is able or unable to articulate themselves in their second language. This could affect the way that you provide services.

Language Considerations

• Consider that person may hesitate to ask for literature or information in their preferred language.
• Dementia patients may revert back to their native language.

We also want to think about considering that a person may hesitate to ask for literature or information in their preferred language. This can become a little tricky. While you do want to make sure that you do have interpreters available and have information available in a person's home language, you also have to realize that that person may not ask for it or may refuse it. If for example, you are told that you should speak English and you want to be respected in your meeting with your healthcare provider, you may forego information that you sorely need in your home language for fear of how that healthcare worker may look at you. You may also be concerned about how the school may look at you as a parent because you are not as proficient in English as you are in your primary language. Thus, you may not ask for additional assistance with the language because of attitudes towards people who do not speak English. You also want to think about the fact that dementia patients often revert back to their native language. This is important to remember when you are evaluating cognition with this population. It may seem that they are having more cognitive decline when in fact they have reverted back to their native language. Providing stimuli in their native language such as music or someone talking may be more appropriate.

Forms

• Availability of forms in multiple languages

It is also important to have forms available in multiple languages. I know it is unreasonable to print every single language on every single form, but if you had forms where someone could pick and choose, where on the front it is English and on the back, it is a different language, this would allow the person receive the information in their language without having to request it and feel uncomfortable. This way the person could choose to either read in their native language or they could choose to read it in English.

Familiarity With Terms

• Cisgender: Describes a person whose gender identity aligns with the sex assigned to them at birth.
• Gender Dysphoria: Clinically significant distress caused when a person’s sex assigned at birth is not aligned with their gender identity.
• Gender Identity: One’s innermost sense of self as male, female, a blend of both or neither. A person’s gender identity can be the same or different from their sex assigned at birth.
• Gender non-conforming (GNC): Describes a person who does not subscribe to society’s traditional expectations of gender expression or gender roles.

Retrieved from Glaad.org

When I was organizing this presentation, although I did not want to do a deep dive into intersectionality, you really cannot help it because people are so dynamic with many different issues. I would like you to be familiar with a few terms. Cisgender describes a person whose gender identity aligns with the sex assigned to them at birth. I will use myself as an example. I would be a cisgender woman because I was assigned the sex as a female at birth, and that is what I identify as. Gender dysphoria is clinically-significant distress caused when a person's sex assigned at birth is not aligned with their gender identity. This would be if I was assigned male at birth, but I do not identify as a male. If I identify as female, then that would be gender dysphoria. If people constantly called me a male and continually called me "he," I might internally struggle with that. Gender identity is one's innermost sense of self as male, female, or a blend of both together. A person's gender identity can be the same or different from their sex assigned at birth. As I said, I am cisgender. That is also my gender identity. I identify as a woman and I am labeled as a woman, so I do not have gender dysphoria because both of those two things align. Gender non-conforming describes a person who does not subscribe to society's traditional expectations of gender expression or gender roles. I got these terms from glaad.org. You can get additional information there.

• Transgender: Describes people whose gender identity and/or gender expression is different from cultural expectations based on the sex they were assigned at birth. Being transgender does not imply any specific sexual orientation.

Transgender describes people whose gender identity and/or gender expression is different from cultural expectations based on the sex they were assigned at birth. Being transgender does not imply any specific sexual orientation. For example, just because you are a transgender male does not also mean that you are homosexual. These two things do not necessarily go together. When you are discussing LGBTQ+ issues, remember all of those are lumped in together, and people have different layers. Intersectionality would include an Asian transgender woman who is homosexual. The different layers of a person can be part of multiple minorities.

• Since some societies only recognize male or female genders, “non-binary” is one term people use to describe genders that don’t fall into one of these two categories, male or female.

Retrieved from https://transequality.org/issues/resources/understanding-non-binary-people-how-to-be-respectful-and-supportive

Some societies only recognize male or female genders. Hopefully, we are moving towards a society that does recognize more than these so that way we can provide more equitable healthcare. Non-binary is one term people use to describe genders that do not fall into one of these two categories, male or female. Again, if we are basing our assessments on what we feel like a male gender role should include, we may not be truly assessing the right things for someone who does not fit into that category. Does that really have an effect on that person's healthcare needs? We really need to think about looking at the function, the needs, and the dysfunction, and not necessarily looking at where someone falls in terms of cultural norms or cultural assimilation.

Forms, Cont.

• Legal name on the form and a spot for the preferred name as a source of information.
• Parent 1/Parent 2  vs. Mother/Father
• A place for the preferred pronoun

There are several areas to consider in forms. For one, the legal name vs. the preferred name on the form. For one, this can be a source of information. Depending on what type of facility you have worked in, there can be names that are very similar. The chart may have a "name alert" warning me about that. This is the reason why I put "as a source of information" for the spot. This information does not need to be a "warning." It could be used as a source of information such as Joe Smith wants to be called Sarah Smith. Instead of saying, "Warning, he wants to be called Sarah," we may want to be more sensitive. There are a lot of things wrong with that statement. Sarah may also want to be referred to as "she." It is a source of information, not a warning. "Warning" really has a negative connotation there implying implicit bias. It helps to change our attitude about it to a source of information. Sometimes people like to be called by nicknames as it makes them feel more comfortable. Thus, this area can be universally good for all patients.

Putting parent one, parent two versus mother and father is another positive change. This is looking at the gender roles and taking into account how a person identifies with their gender. There could be two mothers or two fathers. There could also be one mother and one person that is non-binary. This could be changed on all forms that would help a lot of people. Many people have a lot of different situations. They could have one parent guardian and a second parent guardian. This is where your interviews come in where you can discuss a little bit deeper if you need to know exactly who is parenting the child or who the exact caregiver is and what the relationship is. You can also put a place for the preferred pronoun. Once again, that is something that can easily be put on a form that is universally helpful for everyone. It really does not bother me to have to put "she" as my preferred pronoun; however, if I was one of those people who constantly had to explain what my preferred pronoun was, you can see how this might make a huge difference for them.

Reports

• Using a person’s preferred name
• Using a person’s preferred pronoun
• Providing visuals as appropriate to assist with the understanding of the report
• Choosing language that is easy to understand while not compromising the integrity of the information being presented

For reports, I like to use a person's preferred name. I do that even when I have students who have nicknames. I will write their first name and then their nickname in parenthesis. I then use their preferred name throughout. For adults, you will want to use their legal name first (to match the medical record, but then you can note that the person's preferred name is such and that is how they will be referred to for the duration of the report. We do need to make sure that our reports are able to be identified and linked to the right people.

We can also provide visuals as appropriate to assist with the understanding of the report. This goes back to someone with a language barrier or someone who has neurotypical learning. Just because someone may not give you the information in a way that you feel is the most articulate does not mean that they are not very highly capable of receiving information. This is expressive language versus receptive language. When people have visuals, it is a lot easier for them to digest and understand the information that you are providing. Although they may not be able to expressively articulate themselves well due to whatever reason, providing visuals may help with that receptive ability to digest that information.

Lastly, you want to choose language that is easy to understand while not compromising the integrity of the information presented. I am sure that a lot of us do that. There are times where you definitely have to use some of those clinical terms. But when you are providing information to your student, your patient, or their family, choose language that is easy to understand, especially when there is a language barrier or you have someone that learns differently. This way they are able to receive the information to the best of their abilities.

Activities of Daily Living

• Take into consideration the texture of the person’s hair and their haircare needs/routine.
• Consider if and how a patient’s head/hair needs to be covered and make recommendations for adaptations.
• Consider the type of eating utensils that may be used in the home (forks, flat bottom spoons, chopsticks, hands).

There are some considerations with ADLs as well. One example is the texture of a person's hair and their haircare needs and routines. In a skilled nursing facility or a hospital, often you will see those little black combs with the really close teeth. For someone with curly or very thick hair, this would not work very well. If I was a patient and someone was using that, I would decline for the day. Different ethnicities have different needs for their hair. During the eval or family training, you can ask, "What type of comb are you using for your hair? What type of brush are you using for your hair? What type of hair products are you using? What styles are we going to need to do?" You also need to respect when the patient does not want to work on that. I know for myself I would probably wait until my family members could come and help me with my hair.

Consider if and how a patient's head or hair needs to be covered and make recommendations for adaptations. Many patients wear head coverings for cultural or for religious reasons. We can incorporate that into ADLs. This also shows a level of respect for the patient and helps to build therapeutic rapport. "When do we need to cover your head?" You could also ask a family member to show you how to do wrappings or assist you to train the patient.

The client's eating utensils may be different at home. Some families use forks, spoons, and knives, while others may use flat bottom spoons or chopsticks. Some families may eat with their hands. We need to take all this into consideration when you are working on feeding, self-feeding, or when you are looking at discussing how the patient is going to go home and eat. We can adapt those different utensils or assist the patient with getting up and down from the floor if they are used to sitting on the floor for eating.

• Binding as an ADL
• Consideration of the way a person urinates.
• Addressing same-sex intercourse
• Tucking as an ADL

There are some additional activities of daily living that should be included. One is binding. For those who are not familiar, binding is the act of taking something like an ACE wrap or some type of really taut material and flattening the breasts against the chest. Some people do this as part of their ADL routine. They may not share this with you right away or you may need to ask. It could be something that you can add into your regular routine of when you are talking to your patients so that your patient does not feel like they have to say it. I did not learn this when I was in school but heard it through my social circle. This is an example of something that we should address when we are providing equitable healthcare. We need to look at different subsets of the population and identify what their needs are. Some of these areas can also be found in the research.

Another area is how someone urinates. I do it all the time for my patients who are cisgender. I have had older male patients where I say, "I understand that up unto this point you were standing to urinate. However, now, the safest thing for you to do would be to urinate sitting on the toilet." Someone who is transgender may urinate differently than I assume. You have to take the extra step to make note of how they toilet and then explain safety around that. This is not necessarily, "I want you to sit to urinate because I think that that is how you should be urinating." If a person is a transgender man and they would like to work on urinating standing up, you may have to help them work on standing balance. 

We also may need to address same-sex intercourse. Sexual intercourse is an activity of daily living and it needs to be addressed in all forms not just between a woman and a man. Another area is tucking or arranging genitals in a certain way in clothing. I have 16 years of OT experience, but tucking as an ADL was new to me and came from my social circle. I had never thought to ask about that.  

With all of these different things, this might require additional training. I would certainly say that I am not qualified to teach or assist a patient with binding or tucking as an ADL right now. Those would be things that I would need to learn more about in order to be well-qualified to assist my patients with these ADLs. Many of our assessments are also not taking into account these different ADLs. We need to make sure that we are being client-centered while we are still writing our reports and working on things that will help with the outcome measures.

Pain Management Considerations

• Considering that the patient may be in too much pain due to their pain medicine dosage.
• Understanding that Western medicine is not the only form of intervention available.

Our patients may be in too much pain due to their pain medicine dosage. This goes back to the study that I discussed earlier in the presentation. You may think, "You got pain meds. You should not be in this much pain." You may think that they are not being compliant. You need to consider that there might be other factors having an effect on your patient's ability to participate in their therapeutic treatments. This is part of providing equitable healthcare. We do not want to take everything at face value, but really taking these other things into consideration.

Additionally, Western medicine is not the only form of intervention available. While you may have some patients who are taking their pain medicine as prescribed by their doctor, you may have other patients who use other forms of pain relief. As long as it is something that is safe and approved by the facility, this may be something that you have to work on with your patient. They may use deep breathing, hot packs, or cold packs in lieu of pain meds. Perhaps they are used to stretching to help with the pain. Others like acupuncture. Consider that your patient might want to control pain and take medications based on who they are as a person.

There are many different things that make up a person that we really need to take all of those things into consideration. We cannot just say, "Take the pain medicine and then we will be able to do X, Y, and Z." That may not necessarily work for that patient, and they are probably going to show poor carryover when they leave the facility as a result.

Religious Considerations

• Considering working on feeding techniques during a different time of day when the patient is not fasting.
• Understanding the denial of medical procedures such as transfusions.

There can also be religious considerations. You might have to think about working on feeding techniques during a different day when your patient is not fasting as an example. You may have a patient who celebrates Ramadan and they are fasting during the day. They may refuse treatment but not because they are belligerent.

Another example is refusing medical procedures, like transfusions, as a result of your faith. A Jehovah's witness may refuse a blood transfusion. Rather than making a judgment on their choice, we need to think about how we can be respectful of this person. Within these certain parameters, we need to figure out how to provide equitable healthcare without being judgmental or allowing biases to get in the way.

• Adaptations for praying if the patient is not mobile enough to do so.
• Scheduling service time around prayer time if possible.

We may need to look at adaptations for praying if the patient is not mobile enough to do so. We also may need to work around a person's praying times. We may also person the person with the materials they need for praying. This helps to build a therapeutic rapport with a patient. 

Pediatric Considerations

• Using therapeutic activities that have a diverse representation in their graphics, objects, etc.
• Considering what holidays are or are not celebrated at home as well as what a holiday may mean to a particular group.

If you are working with a pediatric population, think about how gratifying it would be for them to see images of children that look like them on their worksheets, in their social stories, in their handouts, or even having therapy objects that are available. It is also important to have a diverse amount of treatment activities. Children do notice differences between themselves and other people, and that does not have to be a bad thing. That can certainly be celebrated. Something that I like to do with some of my students, especially the ones who have names from different cultures that I am not familiar with, is an "all about me" discussion. This would involve where that student's name is from, what it means, and different things about that culture. I always find it interesting because I like to learn about different cultures. It also puts the child in the driver seat where they are really being celebrated for their difference, and it helps the child internalize the things that you are doing. Additionally, when they have things that sound/look like them or things that are familiar to them, it helps them to internalize the other therapeutic interventions.

We also need to consider what holidays are or are not celebrated in the home, as well as what a holiday may mean to a particular group. For example, a Jehovah's witness does not celebrate birthdays, Thanksgiving, and Halloween. If you have activities that are based on those themes, it may feel uncomfortable for that child. It never hurts to ask a parent or a child what they celebrate or do not celebrate. Holidays may also be celebrated by a group differently. For example, Thanksgiving may be celebrated differently by indigenous people. Once again, we need to look at each client individually.

Touching on intersectionality, I have had students where they have had preferred names that may not be something that I have expected or that the school uses. I have also had transgender students who require mental health services because of depression. Again, we need to think about the fact that sometimes being a member of a certain minority group can also cause other healthcare issues. This can be compounded with the fact that when you are receiving healthcare, you may see images that are negatively showing or absence of your group. You might have a child that has a girl doll that he wants to put "boy clothes" on. I say that in quotation marks because in our culture we do have what are considered boy and girl clothes. However, this can be different in other cultures. Thus, if a child wants to put the dress on a boy doll (or vice versa), and they feel that is a representation of them then that should not be listed as a dysfunction. That should be a source of information. For treatment, we are going to work on this child using both hands together by putting clothing on a doll, but the clothing choices do not need to be corrected.

• Consider financial access when making recommendations.
• Collect books and/or toys that can be given to the child to use at home.

Consider financial access when making recommendations. You need to take into account what that family's financial status is. If a child has a disability, the reality is that they are incurring a lot of costs, not just the therapeutic cost. They are probably incurring a whole set of other charges for things that they may not have if they have a typically-developing child. And, if the family is of a low socioeconomic level, we do not want to make the family feel like they need to get certain things if there are low-tech options or other ways to retrieve those same services. We may be able to collect books and toys that can be given to the child to use at home. Think about this when you are making recommendations, too. Many of us clean out closets frequently, especially those of us who have kids. You could set aside a stash of items to use in these cases.  This may allow for better follow-up at home for that child without making that a financial burden on the parent.

Timeline- 2020 COVID-19 Pandemic

Here is another thing to add to our timeline, the 2020 COVID-19* pandemic. I put a star there as it is important to note that even at the time of this presentation, it is still a very big health issue.

I also want to add this quote, "There's a point where anecdotal evidence becomes the truth," by Temple Grandin.

Discriminatory Behavior Toward Asians

• Despite anecdotal evidence of a spike in discriminatory behavior targeted at Asians across western countries, little empirical evidence for this “othering” hypothesis exists. 

Reny, T. & Barreto, M. (2020). Xenophobia in the time of pandemic: othering, anti-Asian attitudes, and COVID-19. Retrieved from https://www.tandfonline.com/doi/full/10.1080/21565503.2020.1769693

Despite anecdotal evidence of a spike in discriminatory behavior targeted at Asians across western countries, there is little empirical evidence for this "othering" hypothesis exists. That is a mouthful. What this is trying to say is that although there are lots of stories that Asians are being discriminated against in Western countries, there's little empirical evidence for this "othering" hypothesis. There are not a lot of numbers to back this up. I am going to make a few points about this. "There's a point where anecdotal evidence becomes the truth." While we do not always have the numbers to prove that things exist, when you hear a lot of similar, parallel stories from certain groups, then it does at some point become the truth. This goes back to us discussing the fact that when we are looking at diversity in healthcare and the research, it is wonderful to have those numbers to back up things and to really prove with numbers that certain things are really happening. However, there comes a point where you actually have to listen to the public and to stories as they do tell a lot. It might mean that certain things have not been researched. When you are discussing diversity and research, we need to take a look at the things that are affecting different minority and marginalized communities. What things are they facing that are causing barriers to healthcare? The empirical evidence may not be there, but from my social circle, I have friends who are Asian and healthcare providers, and they are saying, "I'm concerned about getting sick." They are concerned about what is going to happen if they become sick with COVID. What are the healthcare workers going to say? Are they going to have an implicit bias? We are healthcare providers, but we are healthcare consumers as well. We worry about the same things that some of our patients worry about.

Timeline- The Supreme Court Protects LGBTQ+ -2020

Here is another thing to add to our timeline. We are going to add to 2020 that the Supreme Court ruled that the LGBTQ+ community was protected from workplace discrimination. Now we have two completely different issues for 2020. Or is it? We do have some Asian people who fall into this LGBTQ+ community. Now we are looking at a group of people who were already concerned about receiving healthcare because of their sexual orientation, and now we are adding COVID-19 on top of that.

I really like this quote. "Don't mock a pain you haven't endured." Again, just because you have not endured something does not mean that it does not exist.

Healthcare Providers...

• have feelings.
• are a part of groups that have been and are discriminated against.
• are not immune to discrimination regardless of degree or social class.
• are also healthcare consumers.

We are healthcare providers that help people, but we also have feelings. We are also part of groups that have been and/or are discriminated against. We are not immune to discrimination regardless of our degree or our social class. We are also healthcare consumers so there is some intersectionality right there. On one hand, I really want to think about how fair I am being to my patients, while on the other, I am thinking, "How fair am I going to be treated when I am a healthcare consumer?" I am still a healthcare consumer, and I am still vulnerable. 

An Application of Maslow's Theory

• Physiological needs – you meet the qualification of the healthcare job and you get hired
• Safety –your differences are tolerated; you won’t be fired from your job due to your differences
• Love and belongingness- ideas are respected; concerns are listened to
• Esteem- you are apart of the action plan to address concerns; your ideas are considered and executed as appropriate
• Self-Actualization- you advocate for others by spearheading policy reform, start community programs, educate your professional peers, etc.

On your piece of paper where you have your timeline, I would like you to go ahead and add these 5 areas as well. I took the Maslow's theory and applied it to just being someone who is a healthcare worker. The hierarchy of Maslow's theory looks like a pyramid. The bottom (or the base) is the longest part would be the physiological needs. I listed this in terms of being a healthcare worker. These physiological needs are what you need first to start a healthcare journey. I need to have all of my qualifications and get hired. That is the bare minimum.

Next, in terms of safety, your differences are tolerated and you know you are not going to be fired from your job due to your differences. Now, a part of that happened in 1964, but recently this also was addressed when it was ruled that the LGBTQ+ community could not be fired. Let's think about this for a minute. It took up until 2020 for someone from that community to really feel safe. "My differences are being tolerated." This is the same for me as I am a minority. I know I am not going to be fired.

Love and belongingness are on the next tier. This is a step up from safety. Now, your ideas are being respected and your concerns are being listened to. "I feel like I belong here because I say something and people are really respecting what I am saying."

Moving up to the next rung, we are looking at esteem. Now, you are a part of the action plan to address concerns. Your ideas are considered and executed as appropriate. "Not only do people hear my ideas and listen to me, but they also say I am right." You are listened to, and your ideas are being considered and executed. You have an action plan.

The last step is self-actualization. Your ideas are important and people are going to listen to you. People are going to form action plans, and they are going to address your concerns. "I feel so comfortable right now that I know that I can advocate for others." You are taking it beyond yourself and advocating for others. Examples are spearheading policy reforms. starting community programs, and educating my professional peers. You are doing all these different things to help bridge the gap for equity.

This is a way that you can think of the application of Maslow's theory for your timeline. You may get stuck at a point like at the safety tier. "We are going to tolerate your difference, and we call you by that pronoun." However, as they are saying it, they are rolling their eyes. This behavior may make it difficult for you to push through and get to the point where you can make the most of your healthcare degree and your opportunity to help others. As Maslow says through his theory, you can move through the different stages. And sometimes, you can be on more than one. Even if something is not met 100%, you can still move on to the next one. However, as someone who has been able to move into the esteem part or the self-actualization part without necessarily being in the love and belongingness part, it makes it more difficult. It can be done, but it does make it more difficult.

Workplace Considerations

• It is difficult to use therapeutic use of self if you are working in a culture that promotes hiding your authentic self.
• If you are afraid that you will lose your job or be overlooked for a promotion due to self advocation that can increase stress.
• If you are afraid that you won’t be believed or will be perceived negatively then you may not be open about your issues.

It is really difficult to use therapeutic use of self if you are working in a culture that promotes hiding your authentic self. If everyone is talking about their spouses and I feel uncomfortable talking about my same-sex spouse, this can be an example of hiding your authentic self. The same thing goes for work attire. You may dress a certain way that is not your preferred way because you want to fit in. You might feel stifled. Of course, there may be dress codes at work that you have to abide by, but this is more along the lines of genders. Additionally, some things are more personal like discussing your spouses and things like that. However, these examples are going back to the idea of creating an atmosphere where a person feels safe, can complete their job, and not always have these thoughts in the back of their mind.

If you are afraid that you are going to lose your job or be overlooked for a promotion due to self-advocation, that can also increase stress. And if you are worried that no one is going to back you up when a patient is spewing xenophobic, homophobic, or racial slurs at you, then this adds an additional layer of stress for you. This is something else that you have to think of in addition to doing your job.

The reason why I point all of this out is that prior to 2020, this was a real issue for people. Many believed that they would be perceived negatively and thus were not open about their issues. If you are want to participate in workplace roundtables to discuss how to make have a conducive work environment or a safe place for students, but you do not feel supported, this really hinders your ability to be a productive member of the team.

Let's Look At Your Timeline

Points to Ponder

• Just because a certain person doesn’t exist in your social circle does not mean that they don’t exist.
• Just because someone doesn’t say that they experience discrimination, bias or prejudice does not mean that they don’t experience it. 
• Just because it hasn’t happened to you, does not mean that it isn’t a current problem.
• Inequity in healthcare is a matter of life and death.

I want you to go back and give yourself points for the things that happened in your lifetime.

When you are thinking about being in the workplace and you are looking at what may be going on in terms of the patients that you serve, you really want to think about the fact that that person wants to go back to being a functioning member of their community. It is more than just fixing the physical ailments that that person has. That person may feel like they need to be at a certain physical level in order to be competitive in their work. Thus, they may not be able to work through their Maslow pyramid without working on certain ADLs in order to be able to participate in their job.

There are many people in healthcare who are of older age. They might have spent a lot of their practice not having to work with certain populations. They had to reframe their mind to be able to disseminate equitable care. This is one of the things that we also need to make sure that we do as well. When we are looking at continuing education courses, do not just take the things that you are interested in. You also need to make sure that you are taking subjects that are necessary for your practice. As I said, my social circle had to explain to me about tucking and binding and how they are significant ADLs in the transgender community. I now need to learn more about that in order t teach these ADLs to my patient. It behooves me as a healthcare provider and someone who really wants to provide equitable care to do that. I need to identify areas where I need to grow.

Many of these issues that we discussed today were not that long ago. Some of you might have been around for the early ones on the timeline. The Americans with Disabilities Act just became law in 1990. Many of us might have to think back to what we were doing in 1990? We may think these have been around for a long time, but they really have not. People's training, their attitudes, and access to care were all affected by these changes, but again, they did not occur overnight. It is important to see when things really started to come to fruition and at what point did attitudes really start to change? While the law makes it illegal to do certain things, attitudes take longer to change. 

Let's go back to our 1972 example of the Tuskegee Experiment. This happened in my father's lifetime. Not only are we a product of our education, but we are a product of our life experiences and other people's life experiences indirectly. If your patient grew up during the years of 1932 to 1972, and someone tells them that they should get the experimental vaccine for COVID-19, you may now have some insight why they may not want to do that. A patient may not like needles or a parent may be against vaccines. There may be underlying reasons for this.

For the Civil Rights of 1964, my dad was born in 1954. When he was 10, he was allowed to go to schools that were desegregated. It was not 1964 right on the dot that he actually went as that is not how that worked. It took a while for that to happen, and during that time, he still continued to go to a segregated school.

The older we are and the longer we have practiced a certain way, the longer it is going to take for us to change our mind about certain things, especially if you have been told for the majority of your career that things are a certain way. As healthcare workers, we are in a very unique position and can have an effect on how the rest of the country runs. We are working with both people who have various jobs and come from all walks of life, and we are also working with children who are going to be our next generation. Providing equitable care is important so that people can go out and be effective. You need to identify your biases, not be discriminatory, and just take care of your patients.

Remember one person from one group of people is not the spokesperson for the entire group. While I provided all of this information and my social circle chipped in, I am one person from one group. I am not the spokesperson for all black, Christian, cisgender, and heterosexual women. I can speak from my experience on certain things which probably aligns with a lot of things that other people have to say that are in one part of my intersectional group. However, you do not have to understand someone's circumstances to be respectful. We all grow up with different things that influence who we are as people. It is also not always on that person to explain to you why something is respectful or disrespectful.

Empathy does not save lives or create equity. There must be action. While it is nice to feel sorry for people and say, "I am trying to understand what you are saying, and I really have respect for your experiences." However, this does not save lives or create equity. We talked about having a language barrier and how that can be detrimental to someone's life. We also talked about people delaying healthcare because they are afraid of being discriminated against. These are very real concerns, and we need to take action.

What Else Can We Do?

• Participate in forums, social media groups, events, activities, etc. to gain insight into the needs of others different from ourselves.
• Read historical accounts and healthcare literature that is written from a minority point of view.
• Go to museums highlighting the culture of others.

There are some things that you can do. You can participate in forums, social media groups, events, and activities to gain insight into the needs of others different from ourselves. Read historical accounts and healthcare literature that is written from a minority point of view. Go to museums highlighting the culture of others. My social circle has pointed out to me some of the gaps that we have in terms of activities of daily living. I would rather be prepared than be reactionary.

When you are in a minority group and marginalized, you want to be heard. Thus, your account of things that happened may be completely different than other accounts. The things that happen to us in our everyday lives do affect our healthcare, and it does affect the way that we are able to interact with our patients and the way that we receive information.

• VOTE!!!! and advocate for policies that promote equity in healthcare.*
• Volunteer your talents/expertise in underserved communities.

*Some religious groups do not vote.

What else can you do? It is important to vote and advocate for policies that promote equity in healthcare. You see how important those things are that we put on our timeline. Those things did not get done just because someone said, "It sure would be nice if we made it equal for x, y, and z." Volunteer your talents and expertise in underserved communities. It is one thing to read about marginalized communities, but it is another thing to make friends and connections in the professional world. This is how you get to know about people and different subsets of groups. I also put a little star next to the voting because I do want to be mindful of the fact that there are some religious groups that do not vote.

A combination of all of our life experiences makes us who we are. If voting is not what works for you, then certainly volunteer your talents somewhere. I also want to be conscientious of the fact that a lot of people, because of religious beliefs, struggle in terms of equity in healthcare. I would implore you to figure out what you have to do to reconcile that. For me, I reconcile that people are human beings and everybody deserves to be treated equally. You do not have to agree with something to advocate for someone and to ethically do your job.

Summary

I will finish with this quote. "It's in your hands to make a better world for all who live in it." We all became healthcare providers for a reason. We did it because we want to help people. The way to help people is to help everyone who is not receiving equitable care. As healthcare providers, we really want to make sure that we are doing everything we can to provide equitable and safe care for our consumers. Thank you.

References

Available in the handout.