The following discussion focuses on communication with immigrants, refugees, and migrant workers. It also reflects challenges to practitioner’s competencies in serving the health and non-health needs of these populations and other mechanisms for establishing open channels of communication with these populations. To provide some context for her remarks, Megan Rooney, director of program development at Health Literacy Media, said there are 42.4 million immigrants in the United States, representing approximately 13 percent of the U.S. population. There are also some 3 million refugees, or approximately 1 percent of the U.S. population, according to figures she obtained from the Migration Policy Institute and Pew Research. She then explained that she intended in her talk to frame the strategies for applying health literacy to communications with immigrants, migrants, and refugees in a way that addresses the unique mental health challenges, experiences of trauma, and different levels of stress. The strategies will also focus on helping these individuals build a sense of trust and a sense of control in their lives. This sense of control has been lost for so many of these people because they have had to either flee for their lives or make the choice to leave their homes to better their lives and their family’s lives.
She also noted that she sees trauma and deeper levels of stress as residing on a continuum. “You see refugees who have experienced torture on
1 This section is based on the presentation by Megan Rooney, director of program development at Health Literacy Media, and the statements are not endorsed or verified by the National Academies of Sciences, Engineering, and Medicine.
the end of deep experiences of trauma and then you have some migrant workers who have made the choice to come to the U.S., as well as many immigrants who have also made a choice and who are happy to be here,” said Rooney. “Nevertheless, they have all experienced separation from family, the need to navigate an extremely complex system, language barriers, and many are away from their support systems when they first get here.”
Culture, said Rooney, informs many aspects of health, including what people are willing to talk about, who they are willing to talk with, what they are willing to disclose, and what words they use. “This can affect a wide variety of communication skills, from which family member you choose to talk to when you have a whole family in your room or your office, what food you suggest people eat, and how you break bad news,” she said. “All of these have implications based on people’s cultural beliefs.” What is important in this context, she added, is for clinicians to be aware of their own cultural beliefs and have an openness about how those beliefs might influence how they interact with their patients.
One topic that Rooney has not heard discussed often in the health literacy field is that of structural competency. Structural competency recognizes the often invisible structural-level determinants, biases, inequities, and blind spots that shape people’s definitions of health long before the clinical encounter. Structural competency, she explained, represents a broad view of health and incorporates social determinants with culture and focuses clinical care on reducing inequalities at the neighborhood, institutional, and policy levels.
To illustrate the importance of using words for messaging that people in the community use and understand, Rooney recounted some instructional materials Health Literacy Media was developing to explain clinical trials to adult learners. When testing some of these materials with an adult learner class and explaining the concepts, she talked about a research study of breast cancer medications and showed a graph to help explain the results. In the ensuing discussion, people in the class kept talking about how the patients who did not respond well in this clinical trial did so because they did not go to their classes or because the teacher did not describe things well enough. Rooney said she was baffled by these comments until she realized that she had been using the words “research study” to mean clinical trial, but the people in her class associated the word “study” with passing and failing a class. “I thought the words ‘research study’ were really simple,” she said. “This experience taught us the importance of talking with people and understanding that the words we think are simple are not all of the time.”
As another example of how good intentions do not always translate into good messages, Rooney told a story about how she wanted to issue a press release and include a quote from someone at the local hospital system
about the importance of getting a primary care provider. While everyone involved in this messaging campaign thought this was a good message, her colleagues at the hospital system told her that it was a bad idea to include a quote from the hospital. Their explanation was that many people in this community could not afford care from a primary care provider associated with the hospital. What would be appropriate, they told her, was to get a quote from someone working at the local free health clinic. The lesson here, said Rooney, was about the importance of working with local health systems and gaining a deep understanding of their communities and their relationships with those communities. “Until you get deep into it, you do not understand those kind of nuances,” said Rooney.
Commenting on Justine Kozo’s use of partner relays, Rooney noted the importance of involving community organizations to get key messages from schools or the government to the individuals who need that information and increase the chances they will pay attention to that information. She also reiterated the lesson from Kozo’s experience that the communication platform matters in that it needs to be simple, easy to use, and not require a password-protected login.
Regarding culturally informed organizations, Rooney said one main feature is that they offer ongoing trainings for staff on cultural humility, cultural awareness, and trauma-informed care. She noted that several speakers at the workshop described training clinics for staff on how to handle and talk with their patients about immigration issues. Another important feature of a culturally informed organization is that it works to ensure its workforce reflects the cultural mix of the population, as well as offering translation and interpretation services. A third critical feature is that such organizations offer services adapted to the specific needs of the client population. For example, a clinic that serves a Latino migrant worker community would offer after-hours appointments, allow family or larger groups into clinic visits, and perhaps use fotonovellas or videos instead of word-heavy written materials. Such a clinic would also factor current fears about immigration enforcement into the approaches it uses to assure its community that it is a safe place for them to come and receive care. Evaluating treatment outcomes by racial, ethnic, and language groups is also important to determine whether strategies are improving outcomes. “This allows for adjustments as needed for certain populations,” said Rooney.
Commenting on important messages she had heard throughout the day, Rooney stressed the need of culturally informed organizations to build connections with local political leadership, which Henry Perea discussed in his presentation. The success of the Healthy Nail Salon Collaborative in getting the state legislature to pass a bill to better protect nail salon workers demonstrates the value of working with the political system. Along the same lines, an overarching theme from the day was the importance of
committing to engaging communities by building trusted relationships in the community through leadership councils, patient advisory boards, and community outreach committees. Such engagement is crucial for truly understanding a community’s needs and informing program development. True community engagement also involves activities that fall outside of the narrow definition of health care services, such as building and organizing a community garden and holding events with the primary mission of having fun and making them interactive.
Rooney reiterated Kari LaScala’s point that a simple smile can go a long way toward building trust and making someone feel safe. “I cannot emphasize that enough,” said Rooney. “These are individuals who are up against an intimidating system every day. They come in to yet another office for yet another conversation that they could potentially not understand, so to see a warm, smiling face can make the tension just completely drop out of their faces and their wall goes down.” Another way to build trust, Jesús Quiñones mentioned, is to guide patients through every step of the health care system and to provide services such as counseling, enrollment support, case management for referrals, financial assistance, and transportation assistance. Rooney said her experience working with refugees has been that the only way they can navigate the system is if someone is there with them. “Expecting someone to find an address and get on a bus does not work with many of them,” she said.
Engaging non-traditional providers, such as shamans, can help build trust with certain communities, as can garnering social capital and understanding and using people’s social networks to engage and care for them. Another strategy for lowering barriers to care for immigrant, migrant, and refugee communities is for health systems to be parsimonious about the information they collect and chart about their clients, particularly information on social history or immigration status. Rooney also noted the importance of creating a welcoming physical environment, of talking to patients and not just handing out written information, and of using easy-to-understand tools such as glucose wands and culturally relevant food plates.
One source of information she has found helpful when working with a new group of refugees is the Cultural Orientation Resource Center, which has a series of country- and culture-specific cultural backgrounders.2 The Centers for Disease Control and Prevention,3 Refugee Health Vancouver,4 and Harborview Medical Center’s EthnoMed website5 are other sources
2 See http://www.culturalorientation.net/learning/backgrounders (accessed May 5, 2017).
3 See https://www.cdc.gov/immigrantrefugeehealth/profiles/index.html (accessed May 5, 2017).
of information on immigrant, migrant, and refugee cultures that health systems should find useful, said Rooney.
Referring to Nick Nelson’s presentation on trauma-informed care, Rooney provided a definition to make sure everyone understood this concept. A trauma-informed approach to care, she said, perceives trauma not simply as a past event, but as a formative one that may be contributing to the client’s current state or circumstances. “To be trauma-informed is to understand clients and their symptoms in the context of their life experiences and cultures with an appreciation that some symptoms may represent efforts at coping,” said Rooney. She added that trauma-informed care represents a shift from focusing on what is wrong at the particular clinical encounter with an individual to one that considers what happened in the past that brought a patient to that clinical encounter. “It recognizes trauma as an ongoing factor,” she said, noting that up to 35 percent of refugees have experienced torture in their countries of origin. Beyond torture, immigrants, refugees, and migrants have experienced a loss of extended family and social networks. Many have also experienced difficult journeys to the United States and spent time in refugee camps, which she said are dangerous places, and in detention centers.
Rooney said she valued Nelson’s comments that providers can have a humble, solicitous curiosity about their patients and that one of the biggest barriers to divulging social history is that the clinician never asked. She said that Nelson told her after his talk that he has a behavioral specialist in the room whenever he is taking a social history so that he has someone with a trained ear who can capture relevant information that he can use to build a care plan. She also seconded his call for medical education to incorporate trauma-informed care, noting that social workers and psychologists receive such training.
To her, training on trauma-informed care should include the following strategies:
- Creating a sense of safety in a predictable environment, something done routinely in mental health care. This includes communicating clearly about clinic locations and hours; building clean, orderly, calming spaces; developing clear policies on how to report abuse; setting aside quiet “time-out” spaces for patients who become agitated; and respecting client privacy and modesty. Clinics should also decide whether having visible security personnel is comforting or distressing to patients, and whether it is culturally appropriate to separate males and females.
- Being trustworthy and building a trusting relationship.
- Emphasizing and encouraging client choice to help patients have more control over their environment and life.
- Collaborating and taking a patient-centered approach that treats patients as the experts regarding their own health. This would include helping patients set goals and evaluate the services they receive.
- Empowering patients to understand how their past experiences might be informing what they are feeling physically and mentally and to help them focus on wellness instead of illness.
Addressing the subject of trauma-informed interpretation, Rooney said that the law requires having a qualified interpreter trained in medical interpretation available at no cost to the patient. By law, children and families may not interpret unless this is an immediate threat to the patient’s safety and no qualified interpreters are available. In emergencies, Rooney has relied on an interpreter hotline as a last resort. Trauma-informed interpretation, she said, places an additional requirement that the interpreter acts as a cultural ambassador who contributes to a sense of safety and trust during the clinical encounter. In smaller communities, clients and interpreters may know each other, so it is important that the interpreters receive training on the need for strict confidentiality because stigma can be an important factor in a patient being reluctant to talk about past events.
When working with an interpreter, Rooney said it is important to learn the client’s preferences and brief the interpreter before the clinical visit. Gender, for example, can be an issue, and her practice, for example, is to have an interpreter of the same gender as the patient whenever possible. Getting the same interpreter for every encounter with a given patient, particularly when mental health is an issue, is key, said Rooney, because it helps build an alliance that fosters trust and safety. Scheduling extra time is important because it often necessary to repeat messages through the interpreter and use methods such as teach-back to ensure the patient understands those messages. In addition, there needs to be time to introduce the interpreter and patient to one another and allow them to interact as part of the trust-building process.
Rooney recommended sitting in a triangle or circle during the clinical encounter so that everyone can see each other and for the clinician to look at the patient, not the interpreter, when speaking to the patient. She also recommended keeping sentences short, avoiding jargon, paying attention to body language, and to be prepared to redirect the conversation when necessary. Once the visit is over, clinicians should check in with the interpreter to hear any comments they may have and what they may have found confusing or distressing. As a final thought on this subject, she said that clinicians should be aware of what she called vicarious trauma. “Some interpreters
have also been through traumatic experiences, so it is nice to debrief the interpreter and check in to make sure that they are okay afterwards,” said Rooney.
She noted several sources for obtaining translated health materials, including the National Library of Medicine,6 EthnoMed,7 and Health Information Translations,8 and she stressed the particular importance of applying health literacy principles when working with immigrants, refugees, and migrants. While it may be obvious to use simple words, it is less obvious that even simple words may not translate as intended into another language or culture. The key concept, said Rooney, is to communicate in a way one’s audience can understand the first time they read or hear it. She also recommended that providers focus on the three most important points they want to cover in a patient encounter and to prioritize need-to-know information over nice-to-know information. For example, for a patient with asthma, how to use an inhaler or avoid situations that might trigger an asthma attack would be need-to-know information. Telling the patient how many people in the United States have asthma would be nice-to-know information.
Teach-back, in addition to being a core health literacy principle, can also help patients have a great sense of control over their lives, said Rooney. “The fact that their provider wants to hear from them and wants to hear their opinion is just showing that they are valued and that their opinion matters,” she explained. Teach-back can also help the provider remain aware of language barriers that could prevent someone from understanding or explaining a concept, and it can provide an opportunity to gauge a patient’s cognitive ability and stress level. Providers should also remember to speak slowly, maintain a friendly tone of voice and a smile, and respect cultural norms around handshakes and hugs at the end of a clinical encounter. “All of this is to create a better kind of empathic, trusting relationship between provider and patient,” said Rooney in closing.
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