Editor's note: This text-based course is a transcript of the What's Culture Got To Do With It? OT Practice With Pediatric Clients From Diverse Communities Podcast, presented by Cristina Reyes Smith, OTD, OTR/L, and Dennis Cleary, MS, OTD, OTR/L.
- After this course, participants will be able to:
- Identify how diverse backgrounds of practitioners and clients influence occupational therapy practice in pediatrics.
- Recognize spaces – physically, emotionally, and therapeutically – that are welcoming to children from diverse communities in the occupational therapy setting.
- List resources to continue to develop cultural awareness within occupational therapy practice.
Dennis: Welcome, everyone. Thank you for joining us. I'm delighted to be joined by Cristina Reyes Smith. Cristina is an Associate Professor at the Medical University of South Carolina. If you want to tell us a little about the topic, your background, and what brings you to our podcast today?
Cristina: Absolutely, I am so excited to be here. I appreciate the opportunity to talk about this critical topic related not only to pediatrics but across the lifespan. I grew up in Charleston, South Carolina, and still, live in the area. My family's originally from Puerto Rico, but my father was in the Navy, and we come from a long line of veterans. We settled in this area when I was three years old. I grew up in a diverse military community during my formative years. Later, I moved to a place that was significantly less inclusive.
My background lays the foundation for the work that I do now in the diversity, equity, inclusion, and justice space in academia, clinical practice, and scholarship. I've been very fortunate to have some presentations and publications over the years around this topic.
I also had a private practice for eight and a half years called Vida Bella Services, which closed in November of 2020 after eight and a half years. Our primary purpose as an organization was to help promote underserved communities' needs and provide access to quality care, particularly for those who had language barriers, a lower income, and were from rural communities.
These experiences, as well as others like being a student, a clinician at a rural community hospital, doing program development, and some nonprofit work, have helped to form who I am today as an individual.
Dennis: Wonderful. You have some background in forming COTAD. Could you tell us a little about COTAD and what led you to become involved in this organization?
Cristina: Absolutely. In 2012, I was fortunate to participate in the AOTA Emerging Leaders Program. During that time, I met some extraordinary people who are very close friends to this day. We discovered that we were from all over the United States and had similar passions, even though we were from diverse backgrounds- culturally, geographically, and in practice areas. We decided that if we were to provide a presentation about how we entered into the profession, this information could be a source of insight for the diverse workforce of the Centennial Vision (2017).
We conducted the presentation through AOTA, and it went well. And we discovered that we loved working together. At the end of our presentation, Dr. Janice Burke, a legal lecturer and recently retired Dean of Thomas Jefferson University, encouraged us to continue with the work. We took that to heart, and a few months later, we decided on a formal name for the organization. Our name was changed once or twice along that path, and Dr. Catherine Hoyt was our founding chair that spearheaded the initiative of the organization's formation.
COTAD is a national 501c3 nonprofit with an incredible new chair, Dr. Arameh Anvarizadeh, who is also serving as Vice President of AOTA. Student chapters have grown all over the country; the last I heard, there were over 50 of them nationwide. Besides the student chapters, there's a mentorship program. We have had a faculty initiative called COTAD-ED for about four or five years, with regular events at the education summit and national conference.
We also have had different initiatives with AOTA and MDI (Multicultural Diversity & Inclusion Network). We have pushed DEIJ (Diversity, Equity, Inclusion, and Justice) motions to the representative assembly, ethics advisories distributed through educational curriculum resources, and practice official documents. Our work has varied over the last eight years. I have taken a step back from COTAD, but I'm still involved more peripherally.
I'm now on the Board of Directors of the AOTA, where I've been trying to devote my efforts to contributing and supporting the other leadership as best I can.
Dennis: What does the acronym COTAD mean? I guess we should have started there.
Cristina: It's the Coalition of Occupational Therapy Advocates for Diversity.
Dennis: What are their goals?
Cristina: Initiatives are centered around promoting the diverse workforce of the Centennial Vision and its many different shapes and forms. We've had a lot of engagement with students and faculty, and we've also been able to give presentations on strategic planning initiatives. Several years ago, there was a two-day workshop at the AOTA Education Summit in Louisville, Kentucky. We also have presented on panels for the Academic Leadership Council several times over the years. The Academic Education SIS group also hosted a holistic admissions panel in early 2021, where we talked about holistic admissions, what that entails, and how it's critical for moving towards a diverse workforce. Now with AOTA's Vision 2025 and wanting to provide occupational therapy for all people, populations, and communities, AOTA's Vision 2025 prominently places DEI as a driver of our strategic directions. One of the five pillars upholding Vision 2025 states: "We are intentionally inclusive and equitable and embrace diversity in all its forms."
Dennis: As occupational therapists and embracing holistic admissions, it's not about a GPA. When I was admitted to school, this was the main focus. Holistic admissions are about looking at an entire person and how their traits and background add diversity to a class, as OT programs benefit from having people from lots of different backgrounds, experiences, and ways of thinking.
Would you say that COTAD helped to influence your beliefs in diversity, equity, and inclusion and influenced your decision to run for the AOTA Board of Directors?
Cristina: I would say that it was a big part of it. The energy, support, and engagement around COTAD and the many initiatives catalyzed incredible changes in our profession, which I think have been very timely. Recently, these changes have come more to the forefront of social awareness. With the work we have done through COTAD and related initiatives, we are better positioned to move forward in different areas. I've been involved in other leadership positions in our state association for several years and have been able to serve on the representative assembly for two terms. Those experiences, as well as the Emerging Leaders Program and the lessons I learned from that, all came together to propel me to run. I was the first person of color on the board of directors in a very long time.
Now, we're seeing everywhere that representation matters, and it is something I strongly believe and feel compelled to support. I can't complain about things unless I'm willing to do something about them and be a part of the positive change. The timing felt right, but I did not expect to be elected to the board of directors the first time I ran. I went into it thinking I would run and see how it went. Here I am two years into it, and it's been an inspiring time yet tumultuous for our profession and society. Being in a position to try to help move things forward has been very humbling and rewarding.
Dennis: Today, we're going to talk about pediatrics, but I think this has been a great lead-up. AOTA has been trying to become a more inclusive organization. In the last several years, there seems to be more emphasis on what leadership is doing.
Cristina: There have been a wide variety of initiatives. Most recently, we had a new membership rollout to try to make membership more accessible for student practitioners across different price points, dependent on the needs of the member. A new AOTA Diverse Leaders Program, supported by a sponsor, is also being launched this year. There's also been some focus on revitalizing some AOTA scholarships, as seen in some of the media that's come out.
AOTA has also been responsive to societal occurrences over the past few years. They have tried to be responsive in a nonpartisan, constructive, and sensitive way. These are not easy topics we deal with as a nation or as a world. So it has to be carefully-
Cristina: Measured, yes, thank you. Along with that, we also need to recognize that saying nothing also sends a message. There are difficult conversations around these topics, and we need to find a place where we agree as a profession by using our code of ethics, core values, and Vision 2025 to guide us.
Dennis: I think we can all agree that increasing diversity within the profession makes us more vital and helps us meet the underlying needs of the communities we serve. Can you talk about those needs, specifically around occupations and culture? What is the connection between occupations and culture when working with people from different communities?
Cristina: Absolutely. If you look at the OT Practice Framework, the word culture or cultural appears over 40 times. To me, this means we should be paying attention to culture as occupational therapy practitioners, and not in a cursory sort of way. This is fundamental to who we are as occupational beings. For example, what we eat, what we wear, where we sleep, and if we exercise are areas of context for each person. These make up our habits, routines, and patterns of behavior. Our cultural contexts have value and are impacted by the environment, both socially and physically. As occupational therapy practitioners, I think it's essential to stop and reflect on how we interact with clients daily. And when we talk about pediatric clients, that encompasses the caregivers, the family, and siblings and considers how those relationships and cultural aspects impact daily occupation, performance, and participation.
Dennis: As OT professionals, I think we have more obligation than other professions because occupations are ingrained. While we love our physical therapy friends, and they too deal with cultural context, what we do is extremely rooted in culture, especially for pediatric clients and their families. Could you talk a bit about your background and how that influences your practice with kids and families?
Cristina: My parents grew up in Puerto Rico. We moved to the US when I was in elementary school. I would edit for grammar and punctuation the notes my mom sent to school and also helped with other tasks. She had been to school in the States until about the third grade; the rest was in Puerto Rico. From a literacy standpoint, I remember being very aware and self-conscious about that.
We were a lower-income family, and my parents split up when I was in the sixth grade. She remarried a year or so later, and I had twin younger sisters born when I was in the eighth grade. They were the light of my life until I had my children, but I still love them very much. This shaped a lot of my formative years. There were also challenges on my father's side. He had several wives, which was a very tumultuous time for us. There were a lot of scars that I won't go into, but it wasn't until adulthood that I could work through some of them. So, we need to address our clients' mental health and well-being, the cumulative effects of trauma, and how that impacts the person. We need to assess what's important to them and honor their lived experiences and the outcomes they wish to seek based on their life trajectory. I also had a lot of loved ones that passed away for various reasons. When I was a kid, my favorite babysitter had leukemia and passed at 19. Also, a guy that I had a crush on ended his own life when he was 14 years old. These life experiences have made me more sensitive to the struggle that others have.
I didn't hear about occupational therapy until after I graduated from college when I volunteered at a children's hospital. I was a child life volunteer, and this little girl wanted nothing to do with me as she just wanted to see her occupational therapist. It hurt my feelings at the time but piqued my curiosity. What is this OT thing? It was a well-respected profession with great opportunities in various settings across the lifespan bringing in problem-solving, compassion, science, and the arts. It seemed too good to be true. Here we are 20 years later, and my license plate is "I love OT."
Dennis: That's cool.
Cristina: Yeah, I think about that little girl a lot. I completed a career interest survey in the seventh grade, which told me that I would make a good mortician. This is slightly different than what I do now.
When it comes to admissions, recruitment, and diversity in the workforce, I reflect on that a lot as well. First, if a person has not heard of occupational therapy, they will not choose occupational therapy as a profession 100% of the time. This fact has driven my work in holistic admissions. Holistic admission is thinking about the outcomes and what we are doing as academic programs to meet our institutional missions and goals. We are community-oriented and meet the needs of our communities, but our communities are very diverse. So if we're not generating practitioners that are responsive to the diverse needs of our communities, we're hampered by the benefits that we're able to offer.
As we are the profession's gatekeepers, we must take a hard look at what outcomes we desire in our students, future professionals, and colleagues. We need to reevaluate what qualities and characteristics we are looking for in our students. We must self-evaluate and widen our applicant pool if we're not getting those students. Do we need to make adjustments to our criteria for admissions?
We can't imagine hiring a faculty member without having a rigorous interview process. Still, we are bringing people into the profession all the time and not necessarily making time to vet them properly.
Dennis: It does. When you think about your experiences and are treating a young person and interacting with a family from a Puerto Rican or Hispanic background, do you feel like you have more street credibility with them? I don't know if that's the correct term, but is it an easier connection? And do families feel more comfortable? I don't even know if you are fluent in Spanish.
Cristina: That's a great question. I am now fluent in Spanish, but I was not when I started the company. I was passionate about Hispanic/Latino, rural, and lower-income families. So for me, it was not always easy, and there was no immediate rapport and trust. Some of this goes back to educational and socioeconomic levels. Social determinants of health impact our clients very uniquely. This goes back to intersectionality and understanding that we're not all defined by this one factor, but we have many different factors that make up our identities as individuals. And sometimes, we have commonalities with others, and we can refer to these as cultural norms or patterns. But then, other times, we may have a separate identity. My family has a distinct identity of being service oriented, compassionate, and trying to have kind words with each other.
Dennis: How can we be better connected to folks from diverse backgrounds? As a white male, I'm a minority within the profession. We each come from our own cultural context. Do you have some tips on how we can make families and the kids we're serving feel welcome when entering our therapy setting?
Cristina: We have to start with cultural humility. I don't know everything, and I learn alongside the family. I am a professional, have an academic degree, and some expertise, but the client and their family are experts of their lived experience. It's a partnership as we move towards their goals. I need to approach the family with humility. The medical model is more authoritarian and more commanding of respect.
Cultural humility says that you bring something to the table, but the client also brings something valuable, valid, and important to the table. There's some great work by Dr. Garcia and Tarvalone, including videos and other resources. There's been a big push for cultural humility. Historically, the term cultural competence has been more widely utilized. What I've been able to gather is that cultural competence was originally more at an organizational level. "How do we build competence as an organization through the structures available across a continuum, from being culturally destructive to being culturally proficient?" There's also some great literature around that as well.
One of the challenges with cultural competence is that you cannot be entirely culturally proficient in every culture in every setting. In contrast, I think it's helpful to dialogue around these concepts and have different metrics for competence building. Other terms are more widely used, like culturally relevant, culturally responsive, culturally aware, and culturally sensitive. Going back to the literature and evidence-based practice, there's no uniformity of terminology. This can challenge people trying to build their skill set and awareness.
Dennis: What were the types of things that you did in your clinic to make people feel welcome from all different backgrounds?
Cristina: That's a great question. We wanted our clinic to be a magical experience for anyone who walked through the doors. We had oversized stuffed animals all over the place, like a tiger, gator, chimpanzee, and loggerhead sea turtle. We also had a painter create a mural of an outdoor space and a roof above this. So when you walked into the clinic, it looked like you were outside. We also had a painting of a sun lighting up in the corner. There were different kites, butterflies, and grass decals on the wall. We also had swing sets, board games, and art supplies. There was a local toy store that an OT created.
Dennis: Wow, that's my dream job.
Cristina: It was amazing. We worked with her to get some fun, engaging toys into the clinic. Creating a playful and inviting space versus some more sterile environments was important to me. We also had a fairy door in the clinic that we would move around. The kids would write notes for the "fairies," and the fairy would leave little surprises for them from time to time. We had an outdoor space where the kids could get some sunshine and play with water and different sand sensory toys. We need to look at the spaces as we're trying to build trust and rapport, particularly if there's a language barrier. Also, having a bilingual staff was critical. Our receptionist was bilingual but was not proficient. She knew enough Spanish to welcome families and show them where the restroom was.
From an inclusion standpoint, we ensured that the restroom was wheelchair accessible and that the parking lot was safe for the kids, especially those trying to escape. We had signs in Spanish because 25% of our clients spoke Spanish. There were some other physical and social environment aspects that we tried to implement based on the National Class Standards for Culturally and Linguistically Appropriate Services. This document contains 15 different recommendations from the US Department of Health and Human Services, Office of Minority Health, where four of the 15 suggestions are related to language access. One talks about signage, and other areas are about interpreters and their quality to provide the best access to care.
Dennis: Could you talk a little bit about working with interpreters? At what point do people have the right to interpreters? And, how do you manage that so that the child is getting the best services?
Cristina: Yes. We don't want is a six-year-old interpreting for mom or dad. At the same time, we may get into this situation ethically where it's no services or working with what we have. As providers, individually and organization-wise, we have due diligence required to have accessibility for interpreters and language access, mainly when dealing with federal funding through Medicaid and Medicare. Many states now have different policies in place for language access, where clinics and providers have to state what their language access plan and resources are. Phone language lines are available for a fee, and video interpretation is available. It's a little pricey, but some larger hospital systems are using that more widely now. During our interview, we looked for clinical providers and administrative staff who had some basic skills to greet and show people around. Then, we have access to the more medically trained interpreters on an as-needed basis. We also provided different training for our providers in Spanish around terminology for therapy practice.
From a cultural humility standpoint, we looked for people who had experience working with diverse and underserved communities and were passionate about that.
We hosted inclusive company social events and would also have bilingual activities available. There were some that we would specifically host called Alegria that we developed with a local pediatrician, special education school teacher, and a speech therapist where we would host dance-based programs. We also partnered with the local children's museum for one year and a local park for several years. This was very popular, and our students could get involved. We hosted educational sessions on stress management, oral health, etc. We had a lot of fun with this programming until COVID hit, and we're still trying to figure out how to bring that back in the future.
There was an article published in 2018 in the World Federation of Occupational Therapy Bulletin Journal about cultural case studies. Our company was featured and discussed some of the strategies for language access that we had implemented. As a measure of success, we retained those 25% Spanish-speaking families for many years. It took a village, including partnerships with pediatricians, social workers, and other individuals in the community.
Dennis: The name of that again was Alegria?
Cristina: Yes, Alegria. It means joyfulness.
Dennis: Another responsibility that we have at minimum is to get folks' names correct. Cultural humility is not saying, "I shouldn't be expected to understand how you pronounce your name." Think how respected someone feels if you can pronounce their name correctly.
Cristina: Absolutely. It's important to acknowledge that; if you do not know, it's okay to ask them.
Dennis: That's the humility part.
Cristina: People recognize if you care. One of the other critical aspects when working across language barriers is being aware of your non-verbal communication or body language. Families will pay attention to that. For example, if you're constantly looking at your watch, grimacing, have crossed arms, or have an unpleasant tone of voice, this may project a negative interaction. While these gestures may be unintentional, or we may be nervous, people may assume that you don't want to be there or don't care. We get better outcomes if we can build that trust and rapport with our clients via client-centered care.
Dennis: I used to live in Columbus, Ohio, where a sizeable Somali community exists. Many health providers are doing significant outreach to their employees to ensure they understand their care's cultural appropriateness, including body language.
I think you're right. We sometimes just need to ask those questions. Are there some sample questions that we can use to begin to understand someone's culture? Is it appropriate to say, "I'm not familiar with people from your background? I want to learn about that. Could you give me some information?" How would you recommend approaching that situation?
Cristina: First, we can use the occupational profile and ask about their living situation to get a sense of their prior level of function. We also want to listen to their goals.
Early on as a pediatric practitioner, I had a Spanish-speaking family from Guatemala with a little girl with Down syndrome. I tried to educate them on fine motor skill activities in the home. The concept of independence for this culture was very different from what we have embraced in occupational therapy in the US. The mother's role was to care for her child with a disability for the remainder of her life. We talked about how she would be bigger one day and need to feed and dress independently. I emphasized that these were some of the skills to get her there. But, it wasn't until we talked about Play-Doh and "making tortillas" that mom became engaged in the home program follow-up. It was simple, but for her, that was a meaningful occupation she valued to work towards some of those underlying skills.
Dennis: When I work with people from different cultures, I've found it essential to have the shoe on the other foot. The families can help me learn about their culture and family. I think we all enjoy being able to share that with other people.
Dennis: Looking at that interplay between culture and occupational engagement, you talked about the tortillas with the young lady with Down syndrome. Can you share other experiences where you have gotten buy-in based on figuring out the occupations critical to the folks you're serving?
Cristina: One little guy that comes to mind was from an inner city. He was African American and had four sisters being raised by a single mom. We worked together for many years. The home environment was not conducive for him to make significant progress with that many children. This was a big part of why we created the clinic in the first place so that children had a safe space where he and other kids could go.
I had the opportunity to complete level two fieldwork at the National Rehabilitation Hospital in Washington, DC. They were very customer service oriented and embraced this idea of healthcare service delivery. I also have a hospitality background, so that resonated with me. In the fieldwork, they talked about taking five minutes at the start of care and at the end of care to check in with the patient and find out how things were going and explain what you did in the session, what they can try outside of the therapy hour, and have that time for questions. I've tried to embrace this tactic as a practitioner.
Back to the case, one of the mother's priorities was to decrease his conflict with his sisters as he was much bigger than they were. We initiated some self-regulation goals so that he could positively interact with his little sisters. At times, we also had the sisters come and be a part of the therapy sessions. I love incorporating siblings whenever possible, as they're some of the best allies in the therapy process.
Our role in health literacy can be connecting our clients with resources in the community. This might be through simple things like the local library, food banks, or primary healthcare services for adults in particular. If they're born in the United States, pediatric clients are eligible for Social Security and Medicaid insurance. If the parents were not born in the United States, they do not qualify for that, especially if they're undocumented. So, there may be trust issues and fear. Preventable or escalating situations may be prevented with the proper care. Another family had diabetes in the family, and the mother ended up losing her vision later because it wasn't managed. She and her husband had two children with special needs, so that was difficult.
Thinking about health literacy and understanding the healthcare system brings up a trip I took after college to the south of France. I was staying with a group from my college on a farm out in the countryside. The farm had a lot of animals, including an ostrich, warthogs, dogs, and all kinds of animals. I was taking my allergy medicine, but when the allergy medicine wore off, I had one of the worst asthma attacks of my life. It was after 10 o'clock by the time I finally told my instructor. The closest hospital was two and a half hours away. I spoke very little French, but they had a family doctor that made house calls. He came and gave me a shot of something and a prescription for a drug that was not FDA approved yet in the United States. My instructor was the only one who spoke French and English, but she could not speak medical French or English. She was the interpreter, and I remember my vulnerability from that experience. This experience has also framed much of my work in this space. When our clients come in, we must take the time to explain the rules of Medicaid and that it has to be renewed every year so their child will be eligible for ongoing services. In our state, they also require home program compliance, and it has to be documented percentage-wise every three months. The onus is on us as the practitioner and provider to find a comfortable space to collaborate with the family and do what is manageable for them. Good evidence shows that integrating into family routines can be beneficial.
Dennis: Think of the millions of people in the United States that are like you in France, that may not be proficient in English but could need healthcare at any given moment. Healthcare is starting to be accessible to people with language barriers, but obviously, we still have a long way to go. As you mentioned, this is especially true with pediatrics assessments that are a large part of what we do to qualify kids for services. Government and insurance payers certainly require kids to be eligible for occupational therapy. Can you talk about language differences in some of our standardized assessments and how you navigate that?
Cristina: Fortunately, some assessments are available in Spanish and English now. The PD-CAT is one that we used quite a bit. It's the computerized version of the Pediatric Evaluation of Disability Inventory. You can email the form to them if they have access, or you can bring it up on your computer and review it like an interview, as I would frequently do. The Sensory Profile, the SPM-2, also has Spanish versions available.
Assessments like the Peabody, for example, have scissor activities. Some families never let their child come near scissors and may not even have scissors in the house. This can be a disadvantage due to cultural factors. Also, in some cultures, the floor is considered very dirty, and tummy time can be a struggle because parents don't want to put their infants or toddlers on the floor. It can be imperative to discuss strategies like using blankets, towels, or whatever they're comfortable with to help build those skills.
Having a Spanish version of the Occupational Profile available can be very helpful. Additionally, there's a national certification available for interpreters, but it's difficult to find interpreters who have that level so it's an ethical call. I look to our public schools quite a bit because they provide different levels of interpreters. Again, it goes back to that access to care piece. If we cannot provide adequate language access, that's a problem.
Sometimes people will use an app. I love the Say Hi app, and it's the best 99 cents I've ever spent. You speak into the phone, and it talks back to you in the other language, but this will only get you so far. As mentioned earlier, having fully trained bilingual interpreters available by phone, which some insurance companies provide free, is beneficial during the assessment process. If we needed a medical discussion with the families, we would make sure to have an interpreter available.
Dennis: This has been a great discussion. As the white male in the room, I have spent a lot of time, especially in the last two years during COVID, trying to increase my cultural humility through reading, watching, and listening to different materials. Do you have recommendations on things people could do to learn more about various cultures and how we as occupational therapists need to approach the clients we're serving?
Cristina: Yeah. I think it's terrific to get out into the community. COVID has made it a little more challenging, but volunteering is one important way. You must be careful and aware that it does not create a "savior paradigm" or power imbalance. I think it's great when people go out into the community for social events or festivals focused on different cultural groups. Even simple things like going to restaurants and engaging with the staff can be the first step. It is also beneficial to have friends from different or diverse backgrounds.
Overall, it is being intentional from a personal level. I've had some challenging discussions with my kids over the years about our values, family identity, inclusion, and what that means. This has been something as simple as who they invite to their birthday parties. I married a white male and have a lot of respect for him, for you, and others. Inclusion doesn't just mean for people of color or people from one group. Inclusion means everyone feels engaged and valued, and we sometimes lose sight of that. This is an integral part of helping to move forward in our profession and recognizing that inclusion goes beyond race and ethnicity and also includes sexual and gender minorities, gender needs, diversity roles, socioeconomic status-
Dennis: Disability status.
Cristina: Disability, status, religious groups, religious minority groups. We all have something to learn and work to do to become more inclusive as individuals, groups, organizations, and a population.
Dennis: Dr. Cristina Reyes Smith from the Medical University of South Carolina and a member of the American Occupational Therapy Association Board of Directors, thanks so much for being with us today.
Available in the handout.
Reyes Smith, C., and Cleary, D. (2022). What's culture got to do with it? OT practice with pediatric clients from diverse communities podcast. OccupationalTherapy.com, Article 5526. Available at www.occupationaltherapy.com