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.
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 (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.
- 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?"
- 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 Airmen. 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.
- 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.
- 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.
- 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.
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?
- 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.
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 Airmen 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.
- 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?
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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