This is a training intended to help health workers with understanding the literacy issues in working with a diverse group of clients. The training was presented to Americorps staff who work as patient navigators in Seattle.
Introduction Ice breaker: A memorable lesson that you learned from a grandparent The goal of this is help you understand both cultural competency and health literacy. We will go over a number of issues including cancer among different ethnic groups, health disparities, and health literacy.
A culture does not always mean a country. Many people think teenagers in America have their own “culture” that many adult Americans don’t understand. If you are helping a teen, she may have a very different way of talking about health than her mother or grandmother.
Cultural proficiency is an important element in providing high-quality health care and preventive services to diverse populations. Cultural proficiency is a set of attitudes, skills, behaviors, and policies that enable peole to work effectively in crosscultural situations. It reflects the ability to acquire and use knowledge of the health-related beliefs, attitudes, practices, and communication patterns of clients and their families to improve services, strengthen programs, increase community participation, and close the gaps in health status among diverse population groups. Cultural proficiency also includes population-specific knowledge, including health-related beliefs and cultural values, disease prevalence, and treatment efficacy
Awareness is consciousness of one's personal reactions to people who are different. A police officer who recognizes that he profiles people who look like they are from Mexico as “illegal aliens” has cultural awareness of his reactions to this group of people. Attitude towards cultural differences: Asian mother with ovarian cancer Attitude gets participants to carefully examine their beliefs and values about cultural differences.
When you think about the people you are helping – what are some things they have in common? How is your own personal culture different from theirs? How is it the same?
The AA population is not equally dispersed within the US, but is concentrated in New York, the South, California, and Illinois. Have the highest death rate and shortest survival of any racial and ethnic group in the US for most cancers. In 2005 the death rate for all cancers combined continued to be 33% higher in AA men and 16% higher in AA women. SES-Compared with 8% of whites, 24% of African Americans live below the federal poverty threshold. 21% of African Americans are uninsured, while only 11% of whites lack health insurance The legacy of the Tuskegee Syphilis Study (in which researchers studied but did not treat African American men with syphilis) has contributed to long-standing mistrust in African American communities concerning clinical research. Widespread skepticism about the medical-care system exists as a result of a long history of discrimination, indifference, and disrespect. The oral history contributing to this mistrust is particularly important to recognize.
For the years 1988-1992, for all cancers combined, Native Hawaiian males and females (tied with African American females) had the second-highest cancer mortality Due to lack of proper surveillance, cancer rates among other Pacific Islanders are not well-defined. Geography plays a large role in API’s access to care.
A history of disrespect, racism, and poverty has contributed to a distrust of science and research by Native American populations. Many tribes do not have a word for cancer in their languages and historically, the disease was thought of as something that affected only the "White man." Some Native Americans may hold a fatalistic attitude toward cancer, and fear that if they talk about cancer or even think about it, they might catch it. Alaska Natives are among the racial groups that have the highest mortality rates for all cancers combined in comparison with all other racial groups. An example of such disparity is that Alaska Native stomach cancer mortality rates for men are 215% higher than the rates for White males. Survival data for Alaska Natives living in Alaska are in the process of being collected but are yet unavailable.
The word Hispanic is a US federal designation, used in national and state reporting systems. Latino/a is a self-designated term of ethnicity. Most cancer data in the US are reported for Hispanics as an aggregate group, which masks important differences that exist between Hispanic subpopulations according to country of origin. Hispanics are less likely to have health insurance than any other racial or ethnic group in the United States. About 22% of Hispanics in the US lived in poverty, compared to 9% of whites. Hispanics are more likely that whites to work in agriculture, construction, domestic and food servies, and other low-wage occupations that don’t offer health insurance. Many Hispanics/Latinos have strong religious and cultural beliefs. Some believe strongly in "fatalismo" (fatalism) and "resignación" (resignation) that diseases or illness cannot be controlled because they are inherited. Many may use folk remedies [such as "uña de gato"(cat's nail)” to treat cancer or wait until they are in serious pain to see a doctor. Some Hispanics/Latinos think that cancer treatment will only prolong life but that no effective cure exists for the disease. Even if people are treated, they may feel that the type of treatment depends on their ability to pay. Family involvement is often critical in the health care of the patient. Hispanics/Latinos may not obtain health care until they are very sick and cannot perform normal functions. This adds to the number and severity of health problems that need to be evaluated. However, women are more likely than men to seek medical care.
Recent immigrants have limited acculturation, poor English proficiency, and poverty rates below the national average. Asian Americans born in the United States are usually highly acculturated and have high literacy, education, and socioeconomic characteristics that are often above the national average. Values in many Asian cultures may be different from those of the Euro-American system, with decisions reached by consensus, group welfare being of primary value, and individual life not as sacred. In some Asian cultures, the family is responsible for treatment decisions and the patient is not told of his or her diagnosis. Recent immigrants also may be dealing with a combination of educational, social, and health problems, along with emotional difficulties related to separation and isolation. Many are in low-wage jobs and need to get permission to take time off work to take care of health care needs. Incidence rates for cervical cancer are almost 3 times as high in Vietnamese women as in Chinese and Japanese women, partly because the Vietnamese, in general, immigrated more recently, are poorer, and have less access to cervical cancer screening.
According to the Mautner Project, lesbians are less likely to visit a doctor for routine gynecological services such as birth control and prenatal care and, therefore, they are less likely to have cancers detected at earlier, more treatable stages. One in ten lesbian and bisexual women said that when they came out to a health worker, they were either ignored or faced hostility. Lesbians are at higher risk of breast, uterine, and ovarian cancers because they are less likely to have children by age 30, if at all. MSM are at risk for , HPV. Is often thought to be little more than an unsightly inconvenience. However, these infections may play a role in the increased rates of anal cancer in gay men. Some health professionals now recommend routine screening with anal pap smears. For FTM’s increased risk of ovarian and endometrial cancer with use of testosterone. MTF’s may be at risk for breast cancer.
The causes of health disparities within groups are complex and interrelated, but likely arise from inequities in work, wealth, income, education, housing, and overall standard of living, as well as social barriers to high-quality cancer prevention, early detection and treatment services.
According to the 2000 United States Census, 31.8 million residents of the United States (14% of the population) speak a language other than English at home. L anguage barrier can hinder healthcare access in the following ways: 1. Appointments may not be made due to difficulty in communicating dates and other necessary information. 2. Health histories may be miscommunicated, leading to delay or inappropriate diagnosis and/or treatments. 3. Patients may not comply with treatment plans or test procedures and may not understand test results. While culture plays a key role in determining consumers’ attitudes and beliefs towards health, providers come to the dynamic with their culture as well. In rural areas, culture may play a role in determining where people access their care. For example, in small towns where there is a local health clinic, a resident may feel reluctant to use the local resources out of fear of privacy being violated. If a woman is diagnosed with cervical cancer, the community may assume this was transmitted sexually, which would affect her reputation. At the same time, rural residents may be hesitant to access nearby urban services out of fear of not knowing their providers personally. Many adults lack literacy skills needed for basic daily living in our society. According to the National Adult Literacy Survey conducted in 1992, approximately 90 million American adults, or 47% of the US population, are low-literate People with a low level of literacy are more susceptible to having a poor health status and more likely to suffer from a serious medical error if they do not understand their illness or course of treatment. Approximately half of the U.S. population reads at or below the 8 th grade reading level and most health-care documents are written at or above the 10 th grade reading level.
We may assume that someone who does not speak English well has less education or is not clever. Explaining things in simpler words does not mean the person is less intelligent. Ask the person, “How do you understand your health condition?” Get a view of their understanding.
When you help someone understand – it is OK to say you don’t know a medical word. You can show them how to look it up in a library or on a computer. You can model for them how to move from not-knowing to learning more.
Here we could let the audience know about UpgoerFive – and the notion of using the most common words. Practice using plain talk yourself with your friends. Eg. – how would you explain a “cell” without using the word “cell?” How would you explain what cancer is? Here is website where you can “play” at using simple langue http://splasho.com/upgoer5/
Besides listening carefully for confusion – also listen for emotion. You can say, “You sound as if you are afraid about the X-ray.” Listen for emotions related to other family members or privacy. Does a person want to ask you a question, but not in front of her father or mother? “ Perhaps we could talk about this another time. Here is my phone number.”
Let the audience concentrate on the message instead of being distracted by complicated language. Make sure the audience understands the message easily.
Pronouns pull the caller into the conversation and make it relevant to them, eliminates lots of words. “ We” communicates partnership with the caller, emphasizes that you care, and helps to establish relationship. Let’s look this up and see what we can find
Metaphors often work well Here is primer from National Library of Medicine about designing easy to read material. http://www.nlm.nih.gov/medlineplus/etr.html
How comfortable do you feel talking with your doctor and asking questions?
http://www.radiologyinfo.org/ Provides information about various radiological procedures http://labtestsonline.org/ Provides information about various lab tests including normal values and what abnormal values may mean http://www.nlm.nih.gov/medlineplus/spanish/medlineplus.html Encyclopedia of health information. Will also lead you to other reputable resources Ethnomed-patient education materials in various languages
Understanding health - helping others Adrianna Gutierrez Sally James April 2013
What is Cultural Competency?Knowing how to speak to people across cultures.
Developing cultural competency helps you understand andcommunicate with people across cultures .
Cultural Competency has 4 Components• Awareness of one’s own cultural worldview• Attitude towards cultural differences• Knowledge of different cultural practices and worldviews• Cross-cultural Skills
Who do we serve? People from many countries, ages, incomes and cultures.
African Americans• 13% of the US population is AA• 3.8% of WA, 6.5% King County• AA are more likely to develop and die from cancer than any other racial or ethnic group• These higher rates could be attributed inequalities in work, wealth, income, education, housing and overall standard of living, barriers to high quality health care, and racial discrimination.
Native Hawaiian and Other Pacific Islanders• 874,000 Pacific Islanders currently live in the United States.• 0.8% of King County population• They are a relatively young population, with a medium age of 25 years.• Many Pacific Islanders, including Native Hawaiians, are socioeconomically disadvantaged and underserved in terms of access to health and social services.• Cancer is among the top 3 causes of death of Pacific Islanders.
American Indian/Alaska Natives• There are more than 500 federally recognized tribes, each with unique cultural, genetic, and socio-demographic characteristics.• 1.1% of King County population• The poor survival rate of American Indians suggests that AI cancer patients experience the disease differently.• Access to healthcare is a problem for AI’s, who are second only to Latinos in lacking health insurance.
Hispanics/Latinos• The Census Bureau announced that Hispanics/Latinos have become the largest, fastest-growing, and youngest ethnic minority population in the United States, comprising 16% of the total population. 9.2% KC• Despite having lower cancer rates for the most common cancers, they are more likely to be diagnosed with a more advanced stage of disease.• 33% of Hispanics/Latinos are uninsured• Major issues to be addressed are the concept of prevention, the under-utilization of screening programs, and the lack of bilingual staff and education materials.
Asian Americans• According to the Census Bureau, 10.8 million Asian Americans currently live in the US• 15.0% of KC population• The Asian American community is comprised of those who are recent immigrants and those born in the US.• Cancer has been the leading cause of death for Asian American women since 1980• Significant disparities exist among sub- populations
LGBTQ Americans• LGBTQ community is diverse in terms of cultural background, ethnic or racial identity, age, education, income, rejection or acceptance of societal stereotypes, and prejudice.• Discrimination and bias can play a role in inadequate medical assessment, treatment, and prevention of LGBTQ health-care access.• Significant barriers include: previous negative health experiences, fear of sexual orientation disclosure, perceived or actual exclusion from health promotion campaigns, misinformation about risks and screening, exclusion of significant others.
Health DisparitiesHealth disparities refer to gaps in the quality of health and health care across racial, ethnic, and socioeconomic groupshttp://www.cancer.org/downloads/STT/2008CAFFfinalsecured.pdf
Barriers• The language barrier• The culture barrier• Literacy• Racial and ethnic discrimination• Economic barriers• Education• Inadequate health insurance
Recognize your own attitude• Check your own feelings when you are interacting with someone.• How are these feelings influencing your opinion/idea of this person?
Assessing Health Literacy Opening the conversation
What is Health Literacy?The ability to read, understand, and act on health care information
You can’t “tell by looking, or hearing”• In one study, 23 of 58 patients who admitted having reading difficulties had never told their spouse. Nine had told no one.• Physicians at a women’s health clinic could identify only 20% of their patients who were at the lowest health literacy level (<third grade)
How do you know if a person has low health literacy?• Listen: does the person explain what s/he needs or do they need help in stating their problem?• Listen: does the person know a diagnosis?• Listen: can the person describe the basics of the treatment prescribed?• Listen: does the person seem to know medical terms?
How to interact with callers who have low health literacy Using plain talk
Listen• Listen to the words the person uses, try to use those same words.• Do not correct them by telling them the “correct” scientific word, unless it is important to the conversation.
Plain talk is…• Clear straightforward expression• Only necessary words
Plain talk is not…• Obscure words• Inflated vocabulary• Convoluted sentence construction• Baby talk• A simplified version of the English language
What makes up plain talk?• “you”, “we” and other pronouns• Active voice• Common, everyday words• Short sentences• Jargon-free zone
Active versus Passive Voice Passive Voice Active Voice• Chemotherapy is • Chemotherapy can offered when there is prevent cancer from a threat of metastasis spreading.• Consultations are • Doctors consult to performed to confirm confirm the diagnosis the diagnosis• Increases number of • Decreases number of words words
Checking Comprehension• Simply asking callers if they understand is not enough• Use open-ended questions “What can I help explain more?” “I’ve given you a lot of information, what can I clarify for you?”
Things to Remember• Think about your culture, what has influenced the way you think and feel.• Recognize your own biases and attitudes toward other cultures.• Make this an open, caring and understanding service for everyone.
ResourcesWebsites for finding health information in various languages:• RadiologyInfo™ Web site http://www.radiologyinfo.org/sp/info.cfm?pg=pros_cancer• Lab Tests Online http://labtestsonline.org/• US National Library of Medicine http://www.nlm.nih.gov/medlineplus/spanish/medlineplus.html• Ethnomed http://ethnomed.org/patient-educationArticles and Videos on health lliteracy:• Article on health disparity in our area http://seattletimes.com/html/localnews/2020655212_duwamishpollutionxml.html• Video explaining interpreter services https://www.youtube.com/watch?v=jfiYYyt_MLk