Addressing Health Literacy in
Addressing Health Literacy in
HIV Care and Treatment:
A Collection of Case Studies
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Table of Contents
About Health Literacy 3
Development of the Case Study Collection 4
Acknowledgements 4
What is a Case Study? 4
Using this Case Study Collection 5
Suggested Learning Objectives 6
Feedback 6
Case Studies 7-48
Anna 7
Theresa 12
John 16
Sharon 21
Joe 25
Archina 29
George 33
Jerome 37
Sarah 41
Maria 45
Reference List 49
Health Literacy Web-Based Resources 50
Appendixes 51
About Health Literacy
Nearly half of all American adults (90 million people) have difficulty understanding and using health information as it is currently presented. Over 300 studies have, in fact, shown that health-related, client education materials cannot be understood by most of the people for whom they were intended. This is a problem for a number of reasons, not the least of which is that there are higher rates of hospitalization and emergency services utilization among clients with limited health literacy. Unfortunately, most individuals will, at some time, encounter health information they cannot understand. Even well-educated people with strong reading and writing skills can have trouble comprehending medical forms and provider instructions regarding a drug or procedure. Health literacy problems have lead to billions of dollars in avoidable health care costs. Attention to this issue could significantly decrease the cost of care in the United States while also improving the health of the population (Institute of Medicine, 2004).
Health literacy is the degree to which individuals have the capacity to obtain, process, and understand basic information and services needed to make appropriate decisions regarding their health. It includes reading, writing, listening, speaking, math, and conceptual knowledge skills, and it requires the ability to comprehend abstract concepts, follow multi-step directions, and understand the consequences of behavior (U.S. Department of Health and Human Services, 2002). Limited health literacy is more prevalent among older adults, minority populations, those who are poor, and medically underserved people (U.S. Department of Health and Human Services, 2006).
Clients need health literacy skills to discuss diagnoses and health care issues with care providers; to read and understand client information sheets, consent forms, and advertising; to use medical tools such as a thermometers and scales; to share their medical history with providers; and to know the connection between risky behaviors and health. Providers can assist their clients with limited health literacy by using simple language, short sentences, and define technical terms; supplementing instruction with videos, models, and pictures; using the teach back method; asking open-ended questions; organizing information so that the most important points stand out and are repeated; and reflecting the age, cultural, ethnic, and racial diversity of their clients. For clients with Limited English Proficiency (LEP), all information should be provided in their primary language (U.S. Department of Health and Human Services, 2006). Two standardized assessment tools that are designed to assist providers in measuring a clients’ health literacy are: 1) Test of Functional Health Literacy in Adults (see Appendix A) and 2) Rapid Estimate of Adult Literacy in Medicine (see Appendix B).
As shortages and funding issues continue, individuals are becoming increasingly more responsible for managing their own health care and for assuming new responsibilities in personal health including seeking information, measuring and monitoring health, and making decisions about insurance and options for care. Health often depends on a person’s ability and willingness to carry out a set of activities needed to manage and treat illness. Self-management is essential to the successful care of people with chronic HIV infection, but this is difficult for those who have limited health literacy and are less knowledgeable about disease management and prevention measures. Limited health literacy is a problem for clients, providers, and health systems. The problem will increase as health systems become increasingly complex as new technologies, scientific jargon, and complicated medical procedures are developed (Institute of Medicine, 2004).
Development of the Case Study Collection
Members of the Curriculum Development Subgroup of the Cultural Competence and Multicultural Care Workgroup developed this collection of case studies to address health literacy as it relates specifically to HIV care and treatment. The Cultural Competence and Multicultural Care Workgroup is a national AIDS Education and Training Centers (AETC) workgroup that is coordinated by the AETC National Resource Center. After completing extensive review of existing resources and articles on health literacy, the Curriculum Development Subgroup members determined that there are four critical elements of health literacy:
1. Empowerment/power dynamics: In most health care settings, providers maintain a high level
of power and influence. While this can be used to the advantage of the client, it is important for providers to encourage clients to assume responsibility for making decisions about their own health-related behaviors.
2. Assessment: A client’s level of health literacy needs to be assessed along with other parameters (including physical, mental, nutritional, social, and safety factors). Clients often give the impression that they understand information given to them by providers. A targeted assessment is needed to gauge the true level of a client’s ability to take in and use information.
3. Responsibility: The provider has a responsibility to assure that information is passed to the
client in a manner that can be understood and used to the benefit of that client’s health. Clients also have some responsibility, but may not be aware of how to go about increasing their health literacy capabilities.
4. Team effort: Assuring that health information is provided in a manner that the client can use
can be a complex process. It can also take more time than one provider has available in one clinic visit. Because of this, a team approach that includes nurses, social workers, health educators, case managers, and/or counselors is helpful. In short, a clinic with a focus on increasing client understanding will provide the best results.
Acknowledgements
This tool was developed by the Curriculum Development subset (Leader: Ronald Lessard, BA, NMAETC) of the AIDS Education and Training Centers (AETC) Cultural Competence and Multicultural Care Workgroup (Leader: Ronald Lessard, BA, NMAETC). Case study authors include Lucy Bradley-Springer, PhD, RN, ACRN, FAAN (Mountain Plains AETC), Yolanda Cavalier, MPH (HRSA HAB), Fransing Daisy, PhD (Northwest AETC), Kelly Rand, MA (NY/NJ AETC), and L’laina Rash, MEd, CHES (MATEC). Other collaborating members include Eric Noel, BA (MATEC) and Dion Richetti, DC (NY/NJ AETC). The workgroup efforts were coordinated by the AETC National Resource Center (Jamie Steiger, BSW, Managing Editor, Andrea Norberg, MS, RN, and Elaine Gross, MS, RN).
What is a Case Study?
Case-based teaching methods require the learner to engage actively in the learning process. Case studies offer an opportunity to develop analytical and problem-solving skills as well as allow for the pragmatic application of new knowledge and skills in challenging situations. All of these are higher-level learning activities which are known to enhance learning and retention. In order for case discussions to facilitate learning, the case must be relevant to the learner and must contain sufficient information to lead the learner to an appropriate conclusion or result (Downer & Swindells, 2003).
Using this Case Study Collection
The value of providing education about health literacy has been carefully researched and documented. However, managing training priorities and needs can often be a challenge for HIV educators. Other barriers to provider education include busy care settings, geographical isolation, cultural isolation, or providers who are not aware of their own needs related to health literacy. Education dedicated solely to the topic of health literacy may not be feasible. One tactic that can help is to incorporate health literacy content into related HIV programming (Bradley-Springer, Messeri, & Vojir, 2003). The case studies in this collection are intended to help in that process.
The following recommendations should be considered when using a case study from this collection:
• Target audiences for these cases are AETC faculty and providers including physicians, advanced practice nurses, nurses, physician assistants, pharmacists, and oral health professionals.
• It may help to incorporate a health literacy case study into an HIV clinical update or workshop. A variety of cases are presented in this collection to assure that one will be appropriate to the audience. For example, George’s case can be used with pharmacists; Archina’s case can be used with women’s health care or family practice providers; and Jerome’s case can be used with oral health professionals.
• This case study collection is intended to be used as an adjunct to education on health literacy, not as a stand alone curriculum. With preparation and adaptation, the case studies can be incorporated into other training programs to illustrate health literacy issues.
• As with all teaching tools, faculty should be creative in revising materials to meet the needs of the learners, the context and constraints of the learning environments, and the teacher’s level of comfort. The individual teacher should feel free to alter the cases in this collection and present them in a variety of ways.
• The case studies can be used in a large group facilitated discussion, in a small group discussion, or as role plays.
• Health literacy information and case scenario discussion may require more than one session to be effective. Providing on-going training on health literacy allows for an opportunity to conduct an extensive review of health literacy literature and engage in thorough discussions on cross-cultural communication and interventions.
• This case study collection includes learner handouts with the case study content and related discussion questions. These are followed by facilitator guides with suggestions for discussion and health literacy conclusions that incorporate the four critical elements of health literacy. Trainers are encouraged to review the health literacy web-based resources highlighted at the end of this case study collection.
• List the four critical elements of health literacy on a flip chart or on a PowerPoint slide so that they are visible. This will help focus the discussion on health literacy rather than on clinical management.
• Consider the time frame needed for each case study. It is always better to allow for more time rather than rush through and cause frustration over unanswered or unaddressed issues. If presented in its entirety, each case study in this collection requires approximately one hour to address all health literacy issues presented in the case. However, this time frame can be shortened should only one or two health literacy issues in the case study be discussed.
Suggested Learning Objectives
Below are four learning objectives that can be applied to most of the case studies in this collection. Trainers are encouraged to use or modify these learning objectives, or identify additional objectives, depending upon the desired learning outcome(s) of the training program.
1. Discuss challenges to HIV care and treatment adherence in clients with limited literacy proficiency.
2. Describe ways to circumvent the problems related to limited health literacy for individual clients.
3. Develop action plans that take the level of health literacy into account.
4. Explore cultural dynamics, such as age, gender, sexuality, race, ethnicity, and socioeconomic
status, that impact HIV care and treatment.
Feedback
The evaluation component of this case study collection is critical. After using a case study, please contact the AETC National Resource Center at info@ with feedback on the case study content, discussion questions, and/or facilitator’s guide. Be sure to identify the name of the case study used, target audience, and method of facilitation (eg, small group discussion, large group discussion).
Case Study: Anna
Learner’s Handout
Anna is an 18-year-old Hispanic student who was infected with HIV four years ago during a sexual encounter with a 30-year-old man. She entered care in a pediatric HIV clinic two years ago when her diagnosis was confirmed after testing was recommended by a neighbor who was also a curandera. Except for fatigue and frequent headaches, Anna has remained asymptomatic. Her viral load has been consistently < 500 copies/mL and her CD4+ T cell count has not gone below 800 cells/mm3.
When Anna graduated from high school, she moved to a city where she started junior college and found a part time job. She was referred to an HIV clinic near campus where she was scheduled to see Dr. Kraig, a specialist with 10 years of HIV care experience. At her first visit to the clinic, Dr. Kraig rushed into the exam room, introduced himself, apologized for being late, looked at her chart, and said, “Well, we can’t do anything until we have some labs run.” He filled out a lab form, handed it to her, and said, “Go see the phlebotomist and make an appointment for next week . . . OK?” Anna nodded and Dr. Kraig left.
Discussion Questions:
1. How do you think Anna felt after that encounter?
2. What assumptions might Dr. Kraig have made to prompt his actions?
3. What do we – and Dr. Kraig – know about Anna’s health literacy level and her understanding of HIV infection? What would you like to know?
4. Who has the power in this interaction? How might the dynamic have been changed? Should it have been changed? Did Anna have any responsibility in this situation?
5. It appears that Dr. Kraig was having a busy day. What can be done in these situations to create better provider-client interactions?
6. What things should be considered when an adolescent moves from pediatric to adult care? Is this a cultural issue? How or how not?
7. Based on the case study discussion, what strategies to address health literacy might you include in an action plan for Anna’s care?
Case Study: Anna
Facilitator’s Guide
Anna is an 18-year-old Hispanic student who was infected with HIV four years ago during a sexual encounter with a 30-year-old man. She entered care in a pediatric HIV clinic two years ago when her diagnosis was confirmed after testing was recommended by a neighbor who was also a curandera. Except for fatigue and frequent headaches, Anna has remained asymptomatic. Her viral load has been consistently < 500 copies/mL and her CD4+ T cell count has not gone below 800 cells/mm3.
When Anna graduated from high school, she moved to a city where she started junior college and found a part time job. She was referred to an HIV clinic near campus where she was scheduled to see Dr. Kraig, a specialist with 10 years of HIV care experience. At her first visit to the clinic, Dr. Kraig rushed into the exam room, introduced himself, apologized for being late, looked at her chart, and said, “Well, we can’t do anything until we have some labs run.” He filled out a lab form, handed Anna nodded and Dr. Kraig left.
Discussion Questions:
1. How do you think Anna felt after that encounter?
• Initiate a general discussion about working with new clients and barriers to being sensitive to health literacy and culture issues.
• Discuss reasons that health literacy and culture are often ignored in clinic settings.
2. What assumptions might Dr. Kraig have made to prompt his actions?
• Although Anna is a new client to this clinic, she is not new to HIV. He may have assumed that she knew all about lab tests.
• He may have assumed that his staff had already talked to her and shown her around the clinic.
• What other assumptions could he have made?
3. What do we – and Dr. Kraig – know about Anna’s health literacy level and her understanding of HIV infection? What would you like to know?
• We know very little.
• It would help to know her understanding of the following:
o How she got infected.
o How HIV affects her body and symptoms that she should report to her provider.
o What various lab tests are for, normal values, and what lab results mean?
o Does she know what a ‘phlebotomist’ is?
o The availability of various treatments and when she should think about starting antiretroviral therapy.
o The need to stay in care even though she is not yet on HIV medications.
o The terms she uses for HIV, lab tests, health care, symptoms, etc.
o How to prevent acquiring additional STDs and blood-borne infections.
o How to prevent transmitting her HIV to others.
4. Who has the power in this interaction? How might the dynamic have been changed? Should it have been changed? Did Anna have any responsibility in this situation?
• Dr. Kraig had all of the power in this situation: he was older, he was a physician, he made all the decisions, etc.
• He could have helped to change the dynamic by talking to Anna and doing some assessment activities related to her understanding of HIV infection and her personal history with the disease.
• The office staff could also have had a role in these assessments and in teaching/ supporting Anna’s rights and responsibilities in this clinic. However, office staff will usually not take on this task unless clinic leadership has instituted a health literacy program and defined the roles of staff members in the program.
• Dr. Kraig will, most likely, maintain his powerful position, at least for the near future. Discuss reasons that this may be a good thing. Discuss reasons why it may cause problems for Anna’s care.
• Why should Anna assert her power in this setting? Discuss barriers to that process. Discuss ways to help Anna develop her power as it relates to health literacy.
5. It appears that Dr. Kraig was having a busy day. What can be done in these situations to create better provider-client interactions?
• Lead a discussion about how participants deal with time problems in their clinical settings.
• Some ideas to initiate discussions:
o What can other clinic staff do to help with culture and health literacy issues?
o What about reading materials or posters?
o What about a nurse/social work/case management clinic visit for all first-time clients to provide orientation and get initial labs?
o Do the learners think that additional staff in their clinics could handle some of these extra duties?
6. What things should be considered when an adolescent moves from pediatric to adult care? Is this a cultural issue? How or how not?
• Many adolescents with HIV have been cared for in pediatric settings where they are provided with supports (ie, follow up phone calls, visits with health educators, nurses, counselors, support groups, peer supports, etc.) that may not be available in an adult setting.
• Some will not know how to make appointments or find the lab or pharmacy; most will not know how to negotiate payment issues.
• This change is literally a culture shock to many young people. They will suddenly be responsible for their own care – the adults who have helped them in the past (parents, pediatric staff) will no longer be there to “do” for them.
• Adolescents also live in a culture of wanting to be independent but not having legal rights to function as such. They may still be dependant on others for income, housing, health insurance, tuition, etc.
• Some adolescents with HIV, on the other hand, have been independent for many years; they have found ways to function without the support of adults. This can further complicate clinical care if the methods they use are counterproductive.
7. Based on the case study discussion, what strategies to address health literacy might you include in an action plan for Anna’s care?
• The foundation of an action plan to address health literacy falls under two of the
four core elements: empowerment/power dynamics and responsibility. It is the providers’ responsibility to empower the client by ensuring that she is able to make care and treatment decisions based on options, information, and understanding. It is the responsibility of the client to act on the information, once she clearly understands it.
• According to the U.S. Department of Health and Human Services, the following list of strategies can be incorporated in an action plan for client care:
o Use simple language, short sentences, and define technical terms.
o Supplement instruction with appropriate materials (videos, models, pictures, etc.) in the client’s primary language.
o Ask clients to explain your instructions (teach back method) or demonstrate the procedure.
o Ask open-ended questions. For example:
-What is your biggest concern now?
-Tell me what you know about HIV infection.
-Who do you think can help you with this information?
o Organize information so that the most important points stand out and repeat this information in a variety of ways.
o Respect the age, cultural, ethnic and racial diversity of the client.
o For a person with Limited English Proficiency (LEP), provide information in their primary language.
o Improve the physical environment by using universal symbols and posters in the primary languages of the client population.
o Offer assistance to complete forms.
Conclusions. Discuss Anna's case in terms of each of the following health literacy elements:
1. Empowerment/power dynamics: Anna is young and new to this clinic. She may see her new physician as someone who deserves her respect, as someone who controls her access to health care, as someone who “knows best,” or as someone who just brushed her off. However she sees him, this interaction has reinforced the power differential and has not increased her personal sense of value, power, or ability to care for herself.
2. Assessment: No assessment was done. Anna may or may not have the knowledge, skills, or desire needed to stay healthy and prevent new cases of HIV.
3. Responsibility: Dr. Kraig has not accepted responsibility to make care issues clear to Anna. Even though he may plan to do this in future meetings, he has lost an important opportunity.
4. Team effort: A team approach would have been very helpful in this clinic. As a new client, Anna may not have needed to see a physician during this visit. She could have spent time with a nurse, social worker, counselor, and/or case manager who could have assessed Anna’s level of health literacy, her knowledge about HIV, and her ability to protect others from her infection. Standard labs could have been ordered and explained, a clinical appointment made, and a general orientation to the clinic completed.VHHIV
Case Study: Theresa
Learner’s Handout
Theresa, a 22-year-old African American female, presents to her primary care physician (Dr. Beal) for enlarged lymph nodes. She reports swelling in her neck for the past two weeks and believes she is experiencing some continuing effects from a “really bad” case of the flu she had two weeks ago. She reports that she is extremely tired, has frequent headaches, and has also had a rash.
The physical exam reveals that Theresa’s inguinal lymph nodes are also swollen. Dr. Beal tells Theresa that her symptoms could be related to a number of things and asks about her last HIV test. She denies a history of ever having an HIV test, adding, “My throat hurts, not my blood, plus I have not lost any weight and I’m obviously not a gay man.” She says she has been with the same male sexual partner for the past four years. She and her partner rarely use condoms because she uses Depo Provera® injections for pregnancy prevention. She does recall that her partner complained of similar symptoms three months ago but he “got better” after one week. She also says that her boyfriend looks healthy and is not gay.
Discussion Questions:
1. Discuss the health literacy implications of her statement: “My throat hurts, not my blood, plus I have not lost any weight and I’m obviously not a gay man.”
2. How can Dr. Beal explain the early signs/symptoms of HIV as well as discuss the risk factors?
3. Should Dr. Beal encourage Theresa to have an HIV test? Why or Why not? What tactics could be used to initiate the discussion?
4. If Theresa is not infected, what precautions will be most important to discuss?
5. If Theresa is found to have HIV, what is Dr. Beal’s role in preparing her for living with the infection?
6. Based on the case study discussion, what strategies to address health literacy might you include in an action plan for Theresa’s care?
Case Study: Theresa
Facilitator’s Guide
Theresa, a 22-year-old African American female, presents to her primary care physician (Dr. Beal) for enlarged lymph nodes. She reports swelling in her neck for the past two weeks and believes she is experiencing some continuing effects from a “really bad” case of the flu she had two weeks ago. She reports that she is extremely tired, has frequent headaches, and has also had a rash.
The physical exam reveals that Theresa’s inguinal lymph nodes are also swollen. Dr. Beal tells Theresa that her symptoms could be related to a number of things and asks about her last HIV test. She denies a history of ever having an HIV test, adding, “My throat hurts, not my blood, plus I have not lost any weight and I’m obviously not a gay man.” She says she has been with the same male sexual partner for the past four years. She and her partner rarely use condoms because she uses Depo Provera® injections for pregnancy prevention. She does recall that her partner complained of similar symptoms three months ago but he “got better” after one week. She also says that her boyfriend looks healthy and is not gay.
Discussion Questions:
1. Discuss the health literacy implications of her statement: “My throat hurts, not my blood, plus I have not lost any weight and I’m obviously not a gay man.”
• Dr. Beal can address the health literacy implications of Theresa’s statement by asking questions such as:
o Let’s talk about what you said.
o What have you heard about HIV infection?
o What do you believe to be true about HIV infection?
• Dr. Beal should ask about Theresa’s understanding of HIV infection and transmission by
asking questions such as:
o Tell me what you understand about HIV.
o How do people keep from getting infected with HIV?
2. How can Dr. Beal explain the early signs/symptoms of HIV as well as discuss the risk factors?
• Dr. Beal should explain the early signs and symptoms of HIV by first explaining that
HIV is a virus. When a person is infected, the virus reproduces in the body. Within 2-4 weeks after infection, individuals may experience flu-like symptoms. The symptoms are fever, swollen lymph nodes in the neck or axillary (armpit) area, weakness, and headaches. These symptoms disappear and it can take years for a person to develop serious complications.
• Dr. Beal should ask about Theresa’s understanding of HIV infection, HIV transmission,
and risk factors by asking questions such as:
o What puts someone at risk for HIV infection?
o How can you tell if someone has HIV?
o What do you know about your partner’s sexual and drug-using experience?
• Dr. Beal should explain to Theresa that it is not who you are but what you do that puts you at risk for HIV infection.
3. Should Dr. Beal encourage Theresa to have an HIV test? Why or Why not? What tactics could be used to initiate the discussion?
• Dr. Beal should encourage Theresa to have an HIV test based on her signs and
symptoms. The previous questions should help initiate this discussion by providing background information to assist Theresa in making an informed decision.
• Dr. Beal should provide basic and easy to understand information on HIV infection at a
level appropriate for Theresa and confirm her understanding of the information. This can be facilitated by:
o Talking openly and honestly about Theresa’s current signs and symptoms.
o Explaining that HIV testing is now considered to be a routine part of primary health care unless the client chooses to opt-out of testing. (This varies in each state. Verify your state laws.)
o Providing easy to read materials.
o Referring Theresa to an HIV counselor, social worker, or nurse educator, if available.
o Explaining that HIV can be managed and treated.
o The sooner the infection is diagnosed, the better the options for treatment.
o Providing resources for counseling.
o Asking her to repeat when she just heard or read.
o Asking her what this information means to her.
4. If Theresa is not infected, what precautions will be most important to discuss?
• Dr. Beal should reinforce the information already shared by discussing risk factors and HIV transmission.
• Explain how a person can stay negative by discussing sexual behaviors and alcohol/drug use.
o Condom use and barriers for all acts of sex.
o Needle sharing and other drug use.
o Partner’s risk factors and behaviors.
• Discuss re-testing in three months.
• Resources such as prevention programs and HIV educators/counselors can assist in discussions of how to practice safe behavior.
5. If Theresa is found to have HIV, what is Dr. Beal’s role in preparing her for living with the infection?
• Dr. Beal should provide Theresa with resources for education and support.
• Introduce (if possible) and refer Theresa to the HIV counselor, social worker, mental health professional, or educator.
• Dr. Beal should explain the need for further tests such as viral load and CD4+ T cell count and the impact these tests will have on care and treatment.
• Discuss the current treatment options.
• Emphasize access to effective treatment and that HIV is not a death sentence.
• Answer any questions that Theresa may have.
6. Based on the case study discussion, what strategies to address health literacy might you include in an action plan for Theresa’s care?
• The foundation of an action plan to address health literacy falls under two of the
four core elements: empowerment/power dynamics and responsibility. It is the providers’ responsibility to empower the client by ensuring that she is able to make care and treatment decisions based on options, information, and understanding. It is the responsibility of the client to act on the information, once she clearly understands it.
• According to the U.S. Department of Health and Human Services, the following list of strategies can be incorporated in an action plan for client care:
o Use simple language, short sentences, and define technical terms.
o Supplement instruction with appropriate materials (videos, models, pictures, etc.) in the client’s primary language.
o Ask clients to explain your instructions (teach back method) or demonstrate the procedure.
o Ask open-ended questions. For example:
-What is your biggest concern now?
-Tell me what you know about HIV infection.
-Who do you think can help you with this information?
o Organize information so that the most important points stand out and repeat this information in a variety of ways.
o Respect the age, cultural, ethnic and racial diversity of the client.
o For a person with Limited English Proficiency (LEP), provide information in their primary language.
o Improve the physical environment by using universal symbols and posters in the primary languages of the client population.
o Offer assistance to complete forms.
Conclusions. Discuss Theresa’s case in terms of each of the following health literacy elements:
1. Empowerment/power dynamics: Theresa is somewhat vulnerable at this point. She is receiving information that she probably didn’t expect and may not be prepared to accept. She is young. She has already concluded what her diagnosis may be based on her symptoms. It is important that she gets information in a manner that will increase her feelings of control over the situation, but the reality is that most people cannot take in the possibility of being infected with HIV without some processing. If Theresa’s test is positive for HIV, it will take time for her to understand how this new development will affect her life.
2. Assessment: Dr. Beal should assess Theresa’s current knowledge, her readiness to accept the information being presented, and her current mental/emotional state.
3. Responsibility: It is the physician’s responsibility to provide Theresa with accurate information and resources to make informed decisions regarding testing and possibly treatment. However, this responsibility can be delegated to other members of the team.
4. Team effort: Regardless of the final diagnosis, the best care can be provided when a variety of resources are available. This usually requires a multidisciplinary team approach.
Case Study: John
Learner’s Handout
John is a 65-year-old White man who has sex with men and who presents with anal lesions and rectal bleeding. A blood test reveals that John is positive for HIV antibodies and has a CD4+ T cell count that is below 200 cells/mm3. An anal Pap smear is performed and shows squamous intraepithelial lesions. John’s physician assistant, Ms. Gonzalez, plans to refer him for an anoscopy and biopsy. While filling out the necessary paperwork for this procedure, the desk clerk notices that John is having problems completing the forms and leaves several sections blank. The clerk reports this back to Ms. Gonzalez.
Ms. Gonzalez must now speak to John about his HIV status and the possible diagnosis of cancer as well. She starts to counsel John and hands him a brochure that gives more details about the virus. John is hesitant about taking the brochure, but places it in his pocket and says that he will read it later. John says he prefers to talk directly to Ms. Gonzalez rather than read a brochure.
Discussion Questions:
1 How can Ms. Gonzalez assess John’s health literacy level? Does the fact that he put the
brochure away give any clues?
2. John is a man who has sex with men and he has been an adult during the span of the
HIV epidemic. Can we make any assumptions about his health literacy based on that? How
can Ms. Gonzalez verify or refute those assumptions?
3. Based on lab values, John’s HIV is well established. Does that tell us anything about
what John knows and/or has accepted about HIV?
4. If John has low health literacy, what would be the added challenge to his HIV care and treatment? How can a provider explain what a positive HIV antibody test means? How can a provider explain the treatment/prevention/risk reduction regimen for HIV infection? How can a provider explain the screening test and the referral for a biopsy?
5. Should members of the office staff be involved in this process? If so, how?
6. What other issues should be considered based on the John’s age? Be sure to consider access to resources, services, and support systems.
7. Based on the case study discussion, what strategies to address health literacy might you include in an action plan for John’s care?
Case Study: John
Facilitator’s Guide
John is a 65-year-old White man who has sex with men and who presents with anal lesions and rectal bleeding. A blood test reveals that John is positive for HIV antibodies and has a CD4+ T cell count that is below 200 cells/mm3. An anal Pap smear is performed and shows squamous intraepithelial lesions. John’s physician assistant, Ms. Gonzalez, plans to refer him for an anoscopy and biopsy. While filling out the necessary paperwork for this procedure, the desk clerk notices that John is having problems completing the forms and leaves several sections blank. The clerk reports this back to Ms. Gonzalez.
Ms. Gonzalez must now speak to John about his HIV status and the possible diagnosis of cancer as well. She starts to counsel John and hands him a brochure that gives more details about the virus. John is hesitant about taking the brochure, but places it in his pocket and says that he will read it later. John says he prefers to talk directly to Ms. Gonzalez rather than read a brochure.
Discussion Questions:
1. How can Ms. Gonzalez assess John’s health literacy level? Does the fact that he put the brochure away give any clues?
• Ms Gonzalez can ask John if he would like to review the brochure together.
• Ms. Gonzalez can also ask him if he understands the terms used in the brochure.
2. John is a man who has sex with men and he has been an adult during the span of the
HIV epidemic. Can we make any assumptions about his health literacy based on that? How can Ms. Gonzalez verify or refute those assumptions?
• It might be assumed that John understands which health behaviors put one at risk for
HIV infection.
• Discuss with John how HIV is transmitted. Ask John if there are behaviors that he
considers “risky” or “safe.”
3. Based on lab values, John’s HIV is well established. Does that tell us anything about
what John knows and/or has accepted about HIV?
• Ask John what he suspects as the cause for his symptoms.
• Ask John what an HIV diagnosis means to him and how will it affect his daily life.
• Ask John about his social networks and their understanding of HIV.
4. If John has low health literacy, what would be the added challenge to his HIV care and treatment? How can a provider explain what a positive HIV antibody test means? How can a provider explain the treatment/prevention/risk reduction regimen for HIV infection? How can a provider explain the screening test and the referral for a biopsy?
• Ascertaining if he understands the terms associated with his symptoms.
• Explaining his HIV diagnosis and treatment in terms that he would understand.
• Explaining the lab tests in terms that he would understand.
• Explaining the treatment regimen in terms that he would understand.
• Determining the level of John’s knowledge about HIV, anal lesions, and cancer.
o Ask if he ever suspected that he might have HIV.
o Ask if he knows anyone with HIV.
o Ask if he ever had an HIV test and, if so, what the results were.
o Ask what he knows about HIV infection.
o Ask if he has any ideas about what caused the anal lesions and the cancer.
o Ask John to tell you what he understands about the treatments for HIV infection and cancer.
• Empowering John to participate and be an active agent in his treatment/prevention/risk reduction regimen.
o Use language that is appropriate to the client’s level of understanding; assess
understanding frequently.
o Use teach back methods to confirm that the client understands.
o Explain treatment options, discuss pros and cons of each, and give John the
opportunity to express his preferences and concerns.
o Use diagrams and pictures to explain various aspects of diagnostic and treatment
interventions.
o Use common terms (cancer, growth, blood test).
• Other strategies can include:
o Use plain language to explain what it means to have HIV.[1]
o Provide easy-to-read handouts.
o Use plain language to describe the breakdown of the immune system.§
o At the end of the visit, refer him to a counselor or health educator to provide more
in-depth knowledge about HIV.
o Determine John’s current level of interest and specific questions to help set initial
topics for discussion.
o Use pictures (such as HIV entering a CD4+ T cell) to help explain concepts.
5. Should members of the office staff be involved in this process? If so, how?
• Utilize the entire clinic staff to increase the health knowledge of the client.
o Counselor: review treatment plan with client and assess ability to adhere to the plan.
o Receptionist: review and confirm appointments; assure that client has directions to the laboratory, pharmacy, X-ray, etc.; assist with insurance forms.
o Health educator: review and discuss risk reduction behaviors.
6. What other issues should be considered based on the John’s age? Be sure to consider access to resources, services, and support systems.
• Because of his age, John may have other co-morbidities such as hypertension and
arthritis that need to be explained.
• Ms. Gonzalez should explain how these co-morbidities will interact with HIV
treatment.
7. Based on the case study discussion, what strategies to address health literacy might you include in an action plan for John’s care?
• The foundation of an action plan to address health literacy falls under two of the
four core elements: empowerment/power dynamics and responsibility. It is the providers’ responsibility to empower the client by ensuring that he is able to make care and treatment decisions based on options, information, and understanding. It is the responsibility of the client to act on the information, once he clearly understands it.
• According to the U.S. Department of Health and Human Services, the following list of strategies can be incorporated in an action plan for client care:
o Use simple language, short sentences, and define technical terms.
o Supplement instruction with appropriate materials (videos, models, pictures, etc.) in the client’s primary language.
o Ask clients to explain your instructions (teach back method) or demonstrate the procedure.
o Ask open-ended questions. For example:
-What is your biggest concern now?
-Tell me what you know about HIV infection.
-Who do you think can help you with this information?
o Organize information so that the most important points stand out and repeat this information in a variety of ways.
o Respect the age, cultural, ethnic and racial diversity of the client.
o For a person with Limited English Proficiency (LEP), provide information in their primary language.
o Improve the physical environment by using universal symbols and posters in the primary languages of the client population.
o Offer assistance to complete forms.
Conclusions. Discuss John’s case in terms of each of the following health literacy elements:
1. Empowerment/power dynamics: John has been presented with two potentially fatal
diagnoses. While he may have been in denial about HIV, it is hard to tell from this case. Regardless, John will need support to move past these traumatic revelations, to gain understanding about his health and treatment, and to be encouraged to start making personal decisions for care.
2. Assessment: The extent of John’s understanding about HIV or rectal cancer will not be
clear until health literacy assessment has been completed.
3. Responsibility: It is Ms. Gonzalez’s responsibility to provide John with accurate
information and resources to make informed decisions regarding diagnosis and treatment. This responsibility can be delegated to other members of the team, but it is important for the primary provider to assure that appropriate clinic procedures are in place.
4. Team effort: The best care can be provided when a variety of resources are used. This usually requires a multidisciplinary team approach. The benefits of a team effort were illustrated in this case study when the desk clerk shared important information with Ms. Gonzalez regarding John’s struggle with the paperwork.
Case Study: Sharon
Learner’s Handout
Sharon is a 31-year-old woman of Caribbean origin. She was diagnosed with HIV in 1994 and has adhered to her care recommendations only sporadically. She attended one clinic visit two years ago and one visit last year, prior to this pregnancy. She presents to the practice in her second trimester of pregnancy. At her last clinic visit, her CD4+ T cell count was 7000 copies/mL.
Sharon arrived in the United States from Haiti more than ten years ago. She has been on her own since early adolescence and became pregnant at 13, after surviving rape. She is hesitant to share information about her past, but says she remains in close contact with sisters residing in Haiti as well as in her current neighborhood. Sharon’s primary language is French.
Sharon currently resides with her two children and fiancée. During subsequent clinic visits, Sharon appears to be detached and, at times, annoyed with the intense focus of the care team. Her lab results suggested she was not adhering to antiretroviral therapy (ART).
In response to her failing adherence, the clinical team initiates home visits from a nurse case manager who is French speaking and of Caribbean origin. The nurse completes an assessment which considers Sharon’s health history, cultural standards, and religious beliefs. Sharon said that she felt she deserved her life, and considered it to be a private matter. Sharon said the intensive team effort was intrusive and embarrassing.
During case management home visits, Sharon was more at ease and willing to discuss her concerns about poisoning her unborn child with HIV meds. Feelings of worthlessness, anger, and sin were frequent topics during conversations with the nurse.
Discussion Questions:
1. How can Sharon’s health beliefs be assessed and how does this help assess her health literacy?
2. What health literacy issues arise when working with a client whose primary language is not English?
3. What were the power dynamics between Sharon and her provider(s)? Do you think she felt
comfortable asking questions? How can providers assure a shame free environment?
4. What teaching techniques could be used to help Sharon understand the effect of HIV
medication on an unborn child?
5. Other than building a trusting and open atmosphere, what questions could the
provider ask to better understand the client’s belief system and understanding of HIV infection and treatment?
6. Based on the case study discussion, what strategies to address health literacy might you
include in an action plan for Sharon’s care?
Case Study: Sharon
Facilitator’s Guide
Sharon is a 31-year-old woman of Caribbean origin. She was diagnosed with HIV in 1994 and has adhered to her care recommendations only sporadically. She attended one clinic visit two years ago and one visit last year, prior to this pregnancy. She presents to the practice in her second trimester of pregnancy. At her last clinic visit, her CD4+ T cell count was 7000 copies/mL.
Sharon arrived in the United States from Haiti more than ten years ago. She has been on her own since early adolescence and became pregnant at 13, after surviving rape. She is hesitant to share information about her past, but says she remains in close contact with sisters residing in Haiti as well as in her current neighborhood. Sharon’s primary language is French.
Sharon currently resides with her two children and fiancée. During subsequent clinic visits, Sharon appears to be detached and, at times, annoyed with the intense focus of the care team. Her lab results suggested she was not adhering to antiretroviral therapy (ART).
In response to her failing adherence, the clinical team initiates home visits from a nurse case manager who is French speaking and of Caribbean origin. The nurse completes an assessment which considers Sharon’s health history, cultural standards, and religious beliefs. Sharon said that she felt she deserved her life, and considered it to be a private matter. Sharon said the intensive team effort was intrusive and embarrassing.
During case management home visits, Sharon was more at ease and willing to discuss her concerns about poisoning her unborn child with HIV meds. Feelings of worthlessness, anger, and sin were frequent topics during conversations with the nurse.
Discussion Questions:
1. How can Sharon’s health beliefs be assessed and how does this help assess her health literacy?
• Initial assessments should address factors that could influence Sharon’s understanding
of HIV and how it affects her health and her pregnancy, including:
o Country of origin
o Migration impact
o Level of ethnic identity and the role ethnicity plays in her daily life
o Preferred language
o Communication style
o Use of informal networks and supportive institutions in the ethnic/cultural community
o Values orientation
o Views and concerns about discrimination and institutional racism
o Educational level and employment experiences
o Habits, customs, beliefs, especially as related to gender roles and reproduction
o Importance and impact associated with physical characteristics
o Current socioeconomic status
o Cultural health beliefs and practices
o Reading level
• Connect Sharon to multiple providers in the office including those who share similar
cultural backgrounds or refer her to a counselor, either spiritual or mental health.
2. What health literacy issues arise when working with a client whose primary language is not English?
• Use materials with pictures or in the clients’ primary language, using common terms. In
Sharon’s case, materials might be best if presented in French.
3. What were the power dynamics between Sharon and her provider(s)? Do you think she felt
comfortable asking questions? How can providers assure a shame free environment?
• A multidisciplinary approach allows for many communication styles.
• Power relations need to be negotiated by both the provider(s) and client when dealing with an individual’s health beliefs.
4. What teaching techniques could be used to help Sharon understand the effect of HIV
medication on an unborn child?
• Use a teach back to confirm that Sharon understands how the treatment affects her
health, her pregnancy, and her baby.
5. Other than building a trusting and open atmosphere, what questions could the provider ask to better understand the client’s belief system and understanding of HIV infection and treatment?
• Providers could use tools known to elicit health beliefs such as Kleinman’s 8 questions
(Lim & Lu, 2005):
o What do you call your problem?
o What do you think has caused it?
o Why do you think it started when it did?
o What does it do to you?
o How severe is it?
o What do you fear most about it?
o What are the chief problems it has caused you?
o What kind of treatment do you think you should receive?
6. Based on the case study discussion, what strategies to address health literacy might you
include in an action plan for Sharon’s care?
• The foundation of an action plan to address health literacy falls under two of the
four core elements: empowerment/power dynamics and responsibility. It is the providers’ responsibility to empower the client by ensuring that she is able to make care and treatment decisions based on options, information, and understanding. It is the responsibility of the client to act on the information, once she clearly understands it.
• According to the U.S. Department of Health and Human Services, the following list of strategies can be incorporated in an action plan for client care:
o Use simple language, short sentences, and define technical terms.
o Supplement instruction with appropriate materials (videos, models, pictures, etc.) in the client’s primary language.
o Ask clients to explain your instructions (teach back method) or demonstrate the procedure.
o Ask open-ended questions. For example:
-What is your biggest concern now?
-Tell me what you know about HIV infection.
-Who do you think can help you with this information?
o Organize information so that the most important points stand out and repeat this information in a variety of ways.
o Respect the age, cultural, ethnic and racial diversity of the client.
o For a person with Limited English Proficiency (LEP), provide information in their primary language.
o Improve the physical environment by using universal symbols and posters in the primary languages of the client population.
o Offer assistance to complete forms.
Conclusion. Discuss Sharon's case in terms of each of the following health literacy elements:
1. Empowerment/power dynamics: Language barriers and different cultural understanding about disease and treatment processes left a power disparity between Sharon and the health care team. Because of her history of sexual violence, Sharon might respond better to a female provider or a provider who does not use a “paternalistic” approach. Nonetheless, Sharon feels overwhelmed by too many people approaching her in the clinic. A trusting relationship with the nurse, who visits her at home, may be the first steps in empowering Sharon to participate in her care.
2. Assessment: Initial assessments of Sharon’s health literacy, understanding of HIV treatments, and the effects of these treatments on her unborn child were inadequate. A more appropriate assessment was not conducted until lab tests continued to show a lack of adherence. Earlier assessment may have prevented some of these problems by initiating the home visits that lead to better communication.
3. Responsibility: It is the care teams’ responsibility to provide Sharon with accurate information related to HIV care and treatment so that she can make informed decisions. It is also the care teams’ responsibility to include Sharon in decisions being made related to her care. In turn, it is Sharon’s responsibility to participate in this decision-making process and to adhere to the care plan that is developed.
4. Team effort: While the intensive team approach intimidated Sharon at first, exposure to multiple providers allowed her to make a connection that significantly contributed to communication, understanding, and the potential for behavior change.
Case Study: Joe
Learner’s Handout
Joe, a 35-year-old homeless Iroquois man, with no recent family contact and a history of alcohol abuse, receives care in a large urban clinic in the Pacific Northwest. Joe was diagnosed with HIV four years ago. He presents at the clinic, as a walk-in client and asks to see Maggie Hernandez, the nurse he usually sees in the clinic for his “appointments.” After about an hour, Ms. Hernandez escorts Joe to an exam room and asks, “What brings you in today?” Joe likes Ms. Hernandez and seeks her out at the clinic, refusing to receive care from other available staff. He tells Ms. Hernandez that he “just thought it was time to come in.”
During the clinic visit, Ms. Hernandez notes that Joe is forgetful and exhibits mental slowing and language finding problems. He appears disheveled and in need of a shower. His last CD4+ T cell count was 620 cells/mm3 and his viral load was 45,000 copies/mL. Joe says he has difficulty taking to his medications; he forgets his schedule, often loses medications, and is generally ambivalent about his need for non-Native drugs. He believes that a traditional Native healer could help him feel more comfortable with his illness. He lives in street camps and continues to drink alcohol on a daily basis.
Joe and Ms. Hernandez discuss an occasion when he received services from a traditional Native healer. The healer refused to continue helping Joe unless he stopped drinking. Joe told the traditional Native healer that he didn’t drink and was offended by what he considered the healer’s disrespectful behavior. Ms. Hernandez attempts to talk with Joe about his drinking but he becomes very upset. She shifts her approach and asks if he would consider a referral for a neuropsychiatric assessment. She also presents the possibility of finding a case manager to help Joe with medication adherence and housing. Joe wonders what an assessment is and why he needs a case manager.
Discussion Questions:
1. Discuss the health literacy implications of Ms. Hernandez’s interaction with Joe.
2. How could a provider clarify the need for a neuropsychiatric assessment and assigning a case
manager for Joe?
3. How does culture influence Joe's ambivalence regarding HIV medication, his desire to
maintain walk-in visits with Ms. Hernandez, and his interest in receiving assistance from a traditional Native healer?
4. Based on the case study discussion, what strategies to address health literacy might you
include in an action plan for Joe’s care?
Case Study: Joe
Facilitator’s Guide
Joe, a 35-year-old homeless Iroquois man, with no recent family contact and a history of alcohol abuse, receives care in a large urban clinic in the Pacific Northwest. Joe was diagnosed with HIV four years ago. He presents at the clinic, as a walk-in client and asks to see Maggie Hernandez, the nurse he usually sees in the clinic for his “appointments.” After about an hour, Ms. Hernandez escorts Joe to an exam room and asks, “What brings you in today?” Joe likes Ms. Hernandez and seeks her out at the clinic, refusing to receive care from other available staff. He tells Ms. Hernandez that he “just thought it was time to come in.”
During the clinic visit, Ms. Hernandez notes that Joe is forgetful and exhibits mental slowing and language finding problems. He appears disheveled and in need of a shower. His last CD4+ T cell count was 620 cells/mm3 and his viral load was 45,000 copies/mL. Joe says he has difficulty taking to his medications; he forgets his schedule, often loses medications, and is generally ambivalent about his need for non-Native drugs. He believes that a traditional Native healer could help him feel more comfortable with his illness. He lives in street camps and continues to drink alcohol on a daily basis.
Joe and Ms. Hernandez discuss an occasion when he received services from a traditional Native healer. The healer refused to continue helping Joe unless he stopped drinking. Joe told the traditional Native healer that he didn’t drink and was offended by what he considered the healer’s disrespectful behavior. Ms. Hernandez attempts to talk with Joe about his drinking but he becomes very upset. She shifts her approach and asks if he would consider a referral for a neuropsychiatric assessment. She also presents the possibility of finding a case manager to help Joe with medication adherence and housing. Joe wonders what an assessment is and why he needs a case manager.
Discussion Questions:
1. Discuss the health literacy implications of Ms. Hernandez’s interaction with Joe.
• Joe is having symptoms that could be related to organic brain problems, alcohol use,
mental health diagnoses, and/or the stressors of being homeless. Discuss how this complicates his ability to communicate clearly and how care providers can deal with these issues.
• Initiate a discussion about clinic expectations of appointment sessions, daily use of
medications, and referrals for a client who is homeless and may not be literate, much less health literate.
2. How could a provider clarify the need for a neuropsychiatric assessment and assigning a case manager for Joe?
• Initially the nurse could introduce the word neuropsychiatric in simpler terms and ask
for feedback from Joe with clarification, if requested.
• If possible, the clinic could make a direct referral to a Native clinic and/or clinical
provider.
• Joe might require transport to his referral, a face-to-face introduction to the referral
provider, and inclusion of a case manager for scheduling of subsequent appointments or referrals.
3. How did culture influence Joe's ambivalence regarding HIV medication, his desire to maintain walk-in visits with Ms. Hernandez, and his interest in receiving assistance from a traditional Native healer?
• Joe has been disconnected from his family and tribe for many years. He thinks of Ms. Hernandez as a friend who he can trust.
• He experienced traditional Native ceremonies including smudging, sweat lodges, and talking circles during his childhood on his reservation.
• Native acceptance of Western health concepts often requires integration of traditional beliefs, holistic health and respect between provider and client within a relationship. How can providers help make this happen?
o Develop a trusting relationship with the client.
o Consult with colleagues or minority specialists.
4. Based on the case study discussion, what strategies to address health literacy might you
include in an action plan for Joe’s care?
• The foundation of an action plan to address health literacy falls under two of the
four core elements: empowerment/power dynamics and responsibility. It is the providers’ responsibility to empower the client by ensuring that he is able to make care and treatment decisions based on options, information, and understanding. It is the responsibility of the client to act on the information, once he clearly understands it.
• According to the U.S. Department of Health and Human Services, the following list of strategies can be incorporated in an action plan for client care:
o Use simple language, short sentences, and define technical terms.
o Supplement instruction with appropriate materials (videos, models, pictures, etc.) in the client’s primary language.
o Ask clients to explain your instructions (teach back method) or demonstrate the procedure.
o Ask open-ended questions. For example:
-What is your biggest concern now?
-Tell me what you know about HIV infection.
-Who do you think can help you with this information?
o Organize information so that the most important points stand out and repeat this information in a variety of ways.
o Respect the age, cultural, ethnic and racial diversity of the client.
o For a person with Limited English Proficiency (LEP), provide information in their primary language.
o Improve the physical environment by using universal symbols and posters in the primary languages of the client population.
o Offer assistance to complete forms.
Conclusions. Discuss Joe's case in terms of each of the following health literacy elements:
1. Empowerment/power dynamics: Joe seeks HIV care from a staff nurse with whom he has developed a relationship. To expand his circle of care providers, this respected nurse could be the bridge to additional providers, including referral providers. A case manager could be especially helpful as Joe makes new contacts and develops a better sense of control.
2. Assessment: A baseline assessment informed Ms. Hernandez about Joe’s apparent cognitive deterioration, but she understood her limitations in this area and suggested a referral for more in-depth evaluation. The referral would require a bridge between staff at the clinic and between agencies with the need for transportation and advocacy. Additional referrals might be considered for substance use assessment and treatment as well as housing support.
3. Responsibility: Ms. Hernandez would take responsibility for Joe's access to further care. She needs to explain medical terminology, ask for client feedback, provide introductions to new clinic staff, and help with access to referral resources. At this point, Joe does not have the tools, information, or ability to move forward without this assistance.
4. Team effort: A team approach can be helpful for effective care with Native clients. An introduction to other team members requires bridging from a respected staff to additional team members. Ms. Hernandez could assess Joe's level of health literacy with reflective listening techniques (making a statement and asking for client feedback). She can assess his understanding of the neuropsychiatric referral (again using reflective listening), and respectfully introduce new staff to allow for an expanded circle of treatment and care. Case managers and/or community health representatives in Native communities have skills and insight that would help Joe deal with his problems.
Case Study: Archina
Learner’s Handout
Archina, a 55-year-old East Indian woman, is brought to her ob/gyn appointment by her husband. Her native language is Hindi, but she speaks and understands English. She complains of vaginal irritation for the past three months and pain with sex for one month. She reports that her husband is tired of her crying during sex. She stated that she doesn’t like to see doctors too often, because she doesn’t want to be a burden. She tries to take care of most problems herself, plus her husband doesn’t want her to “charge up” the health insurance. Archina moved to the United States from India with her family in 1996. She currently lives with her husband and is unemployed. She reports occasional sex with her husband, but states that he is gone most of the time for business. During a pelvic exam, Dr. Rue notices signs of a severe yeast infection.
Dr. Rue reviews the chart for lab test history and notices that there isn’t an HIV test on file. She encourages Archina to have an HIV test as part of her routine care. Archina is hesitant and states that she should ask her husband. After further discussion with Dr. Rue, Archina agrees to the test and is tested with rapid test technology. The test is reactive. Dr. Rue informs Archina of the preliminary diagnosis and attempts to explain the confirmatory test. Archina is confused and doesn’t understand the results; she starts crying and says she has brought shame on her family and will be punished. Dr. Rue asks if Archina has had sex with anyone other than her husband. She says she would never think of such a thing and wonders why Dr. Rue is asking this question.
Discussion Questions:
1. How does Archina’s culture affect her health literacy?
2. Based on the information we have, who makes health care decisions for Archina? How could this make a difference with an HIV diagnosis?
3. How could Dr. Rue empower Archina to address her own health problems? Discuss potential barriers to empowerment.
4. How could Dr. Rue have handled this situation differently?
5. Based on the case study discussion, what strategies to address health literacy might you include in an action plan for Archina’s care?
Case Study: Archina
Facilitator’s Guide
Archina, a 55-year-old East Indian woman, is brought to her ob/gyn appointment by her husband. Her native language is Hindi, but she speaks and understands English. She complains of vaginal irritation for the past three months and pain with sex for one month. She reports that her husband is tired of her crying during sex. She stated that she doesn’t like to see doctors too often, because she doesn’t want to be a burden. She tries to take care of most problems herself, plus her husband doesn’t want her to “charge up” the health insurance. Archina moved to the United States from India with her family in 1996. She currently lives with her husband and is unemployed. She reports occasional sex with her husband, but states that he is gone most of the time for business. During a pelvic exam, Dr. Rue notices signs of a severe yeast infection.
Dr. Rue reviews the chart for lab test history and notices that there isn’t an HIV test on file. She encourages Archina to have an HIV test as part of her routine care. Archina is hesitant and states that she should ask her husband. After further discussion with Dr. Rue, Archina agrees to the test and is tested with rapid test technology. The test is reactive. Dr. Rue informs Archina of the preliminary diagnosis and attempts to explain the confirmatory test. Archina is confused and doesn’t understand the results; she starts crying and says she has brought shame on her family and will be punished. Dr. Rue asks if Archina has had sex with anyone other than her husband. She says she would never think of such a thing and wonders why Dr. Rue is asking this question.
Discussion Questions:
1. How does Archina’s culture affect her health literacy?
• The dynamics of culture and health literacy should be explored:
o East Indian culture, role of women, and male dominance
o Health seeking behaviors and East Indian culture
o Indicators for health literacy
-Language
-Reading level
-Oral and written comprehension of health information
o Health seeking behaviors of women
o Understanding of HIV infection and cultural conceptions of sexual norms
2. Based on the information we have, who makes health care decisions for Archina? How could this make a difference with an HIV diagnosis?
• It appears that her husband makes her health care decisions.
• The implications of male dominant cultures should be explored in relation to health care access:
o Decision-making power in families
o Family structure and societal roles
o Access to information and health care for women
o Religious beliefs
o Traditional medicine
• If diagnosed with HIV, Archina may not have access to care and treatment due to her husband’s role in making her health care decisions. For example, her husband may not take her to scheduled appointments. Also, Archina may decide not to inform her husband of her diagnosis due to fear. These ideas should be explored further.
3. How could Dr. Rue empower Archina to address her own health problems? Discuss
potential barriers to empowerment.
• Dr. Rue can offer options to Archina for support. Possible options are listed below.
However, Archina has to be willing to make the choice to empower herself.
o Partner Archina with culture specific support programs
o Counseling
o Involve husband and offer support/counseling
o Explain why it is important for Archina to take an active role in her health care
• Potential barriers to empowerment are:
o Gender roles based on culture
o Information, knowledge, and beliefs
o Finances
o Access to insurance and medical services
o Fear
o Family and social support
o Stigma and discrimination related to HIV
4. How could Dr. Rue have handled this situation differently?
• Discussion points during HIV testing and counseling:
o Opt-out option for testing
o Describing the test process and results
o Respecting Archina’s request to ask her husband
o Preparing Archina for the test results
o Addressing beliefs regarding HIV
o Assessing knowledge and experience with HIV
o Assessing knowledge about her husband’s HIV status and his risk behaviors.
5 Based on the case study discussion, what strategies to address health literacy might you include in an action plan for Archina’s care?
• The foundation of an action plan to address health literacy falls under two of the
four core elements: empowerment/power dynamics and responsibility. It is the providers’ responsibility to empower the client by ensuring that she is able to make care and treatment decisions based on options, information, and understanding. It is the responsibility of the client to act on the information, once she clearly understands it.
• According to the U.S. Department of Health and Human Services, the following list of strategies can be incorporated in an action plan for client care:
o Use simple language, short sentences, and define technical terms.
o Supplement instruction with appropriate materials (videos, models, pictures, etc.) in the client’s primary language.
o Ask clients to explain your instructions (teach back method) or demonstrate the procedure.
o Ask open-ended questions. For example:
-What is your biggest concern now?
-Tell me what you know about HIV infection.
-Who do you think can help you with this information?
o Organize information so that the most important points stand out and repeat this information in a variety of ways.
o Respect the age, cultural, ethnic and racial diversity of the client.
o For a person with Limited English Proficiency (LEP), provide information in their primary language.
o Improve the physical environment by using universal symbols and posters in the primary languages of the client population.
o Offer assistance to complete forms.
Conclusions. Discuss Archina's case in terms of each of the following health literacy elements:
1. Empowerment/power dynamics: Archina followed her physician’s directions without asking questions. Archina, at this point, believes she has limited power. She is unemployed and supported by her husband. She also lives with cultural norm of male dominance and female submission. She is clearly entrenched in this tradition and may not be able to exert her own power for the foreseeable future. This obvious submissiveness does not fit easily into the culture in the United States and it may be difficult for Dr. Rue and other care providers to be non-judgmental.
2. Assessment: No assessment was conducted related to prior knowledge of HIV, or power structures within Archina’s culture.
3. Responsibility: It is important to talk about responsibility with Archina to gain an understanding of the cultural components of her care.
4. Team Effort: A multidisciplinary approach would have been very beneficial in this situation. It would have offered Archina the support she needed.
Case Study: George
Learner’s Guide
George is a 47-year-old White male with a high school education. He was diagnosed with HIV in 1987 and has been treated. He visits a new clinic on the recommendation of his partner and after a genotype test, George is started on a new regimen of Aptivus, Norvir, Combivir and Fuzeon. His first labs at the new clinic show that his CD4+ T cell count is 447 cells/mm3 and his viral load is 41,014/mL copies. After a little more than a month on the new regimen, his viral load is 800 copies/mL. In another three months his viral load is undetectable and his CD4+ T cell count is 731 cells/mm3. When George goes to the pharmacy to pick up his refills, the pharmacist tells him his insurance has denied the Fuzeon. The pharmacist explains to George that in order to be on Fuzeon a client must have a viral load. Because his viral load is suppressed, he is not eligible for the drug. George leaves the pharmacy without his Fuzeon. When he returns home, he calls one of the nurses at his clinic to ask whether he should still be taking the Fuzeon and if so, why the pharmacist won’t give it to him. The nurse contacts the insurance company and finds out the pharmacy presented the prescription as a new claim and not a refill.
Discussion Questions:
1. Should health literacy be assessed on a client who is well educated and literate in the traditional sense? Why is this important?
2. How do you think George felt after his experience with the pharmacist?
3. If the pharmacist believed that George should not receive Fuzeon, what steps should he have taken to protect or educate the client?
4. What opportunities were missed?
5 Based on the case study discussion, what strategies to address health literacy might you include in an action plan for George’s care?
Case Study: George
Facilitator’s Guide
George is a 47-year-old White male with a high school education. He was diagnosed with HIV in 1987 and has been treated. He visits a new clinic on the recommendation of his partner and after a genotype test, George is started on a new regimen of Aptivus, Norvir, Combivir and Fuzeon. His first labs at the new clinic show that his CD4+ T cell count is 447 cells/mm3 and his viral load is 41,014/mL copies. After a little more than a month on the new regimen, his viral load is 800 copies/mL. In another three months his viral load is undetectable and his CD4+ T cell count is 731 cells/mm3. When George goes to the pharmacy to pick up his refills, the pharmacist tells him his insurance has denied the Fuzeon. The pharmacist explains to George that in order to be on Fuzeon a client must have a viral load. Because his viral load is suppressed, he is not eligible for the drug. George leaves the pharmacy without his Fuzeon. When he returns home, he calls one of the nurses at his clinic to ask whether he should still be taking the Fuzeon and if so, why the pharmacist won’t give it to him. The nurse contacts the insurance company and finds out the pharmacy presented the prescription as a new claim and not a refill.
Discussion Questions:
1. Should health literacy be assessed on a client who is well educated and literate in the traditional sense? Why is this important?
• It is important to remember that health literacy involves more than the client’s ability to read and write. Tools such as the LEARN model address power dynamics and interpersonal relationships that may be important for clients at varying levels of education, literacy, and comprehension.
The LEARN model (Berlin & Fowkes Jr., 1983) consists of five steps:
Listen with empathy and understanding of the client’s perception of the problem;
Explain your perception of the problem;
Acknowledge and discuss the differences and similarities;
Recommend a course of action or treatment; and
Negotiate an agreement.
2. How do you think George felt after his experience with the pharmacist?
• George left without asking questions and without sharing any of his own knowledge. In fact, he left the pharmacy distrusting his own understanding of his treatment regimen.
• If the pharmacist had engaged George, he might have learned that this was not an initial prescription for Fuzeon. It helps to approach the client with open-ended questions. It also helps to acknowledge the client as an important source of information about his or her own health.
3. If the pharmacist believed that George should not receive Fuzeon, what steps should he have taken to protect or educate the client?
• The pharmacist could work with the clinic. If the pharmacist thought there was an error in the prescription, the pharmacist could have contacted the provider to further discuss the issue.
• Using plain language and non-judgmental questions, the pharmacist could have assessed George’s knowledge of his regimen.§ Through this conversation, the pharmacist might have learned enough to understand that a processing error had been made.
4. What opportunities were missed?
• The discrepancy in the prescription created an opportunity to discuss health, disease, and treatment knowledge and to forge a relationship to resolve the discrepancy. The pharmacist, after engaging George in discussion, could have suggested calling the clinic together, creating a true team approach.
5 Based on the case study discussion, what strategies to address health literacy might you include in an action plan for George’s care?
• The foundation of an action plan to address health literacy falls under two of the
four core elements: empowerment/power dynamics and responsibility. It is the providers’ responsibility to empower the client by ensuring that he is able to make care and treatment decisions based on options, information, and understanding. It is the responsibility of the client to act on the information, once he clearly understands it.
• According to the U.S. Department of Health and Human Services, the following list of strategies can be incorporated in an action plan for client care:
o Use simple language, short sentences, and define technical terms.
o Supplement instruction with appropriate materials (videos, models, pictures, etc.) in the client’s primary language.
o Ask clients to explain your instructions (teach back method) or demonstrate the procedure.
o Ask open-ended questions. For example:
-What is your biggest concern now?
-Tell me what you know about HIV infection.
-Who do you think can help you with this information?
o Organize information so that the most important points stand out and repeat this information in a variety of ways.
o Respect the age, cultural, ethnic and racial diversity of the client.
o For a person with Limited English Proficiency (LEP), provide information in their primary language.
o Improve the physical environment by using universal symbols and posters in the primary languages of the client population.
o Offer assistance to complete forms.
Conclusions. Discuss George's case in terms of each of the following health literacy elements:
1. Empowerment/power dynamics: Along with the insurance company, the pharmacist is acting as a gatekeeper. While the pharmacist did give George an explanation, it was done in a manner that decreased George’s sense of power.
2. Assessment: The pharmacist assumed George was not knowledgeable about his medication regimen. He offered him an explanation but no further teaching on the topic. Conversely, he also assumed George understood his viral load and its importance in choosing a treatment regimen.
3. Responsibility: The pharmacist in this situation did not take responsibility for George’s welfare. George took responsibility for his own health by contacting the clinic immediately. Without George’s call to the clinic, his health team might not have had the opportunity to immediately intervene on his behalf. Depending on the frequency of his visits, George could have been off of the Fuzeon long enough to see a decline in his CD4+ T cell count and an increase in his viral load. He also might have been at risk for developing resistance to a regimen that was clearly very effective and one of the last options available to him.
4. Team effort: The team approach would be very useful in this situation. If the pharmacist had contacted the clinic when George brought in the prescription, the confusion related to the situation could have been avoided.
Case Study: Jerome
Learner’s handout
Jerome is a 30-year-old Hispanic man who has presented at his dentist’s office with a complaint of “a sore on the roof of my mouth.” Dr. Perez has been Jerome’s dentist for several years. On initial examination, she sees a lesion on the hard palate that looks like a bruise the size of a pea. She explains her finding to Jerome by saying, “What you have on the roof of your mouth is a sore that could indicate that you have a kind of cancer called Kaposi’s sarcoma. Have you ever heard of Kaposi’s sarcoma?”
Jerome looks confused and says, “Isn’t that the kind of cancer gay guys get when they have HIV?” Dr. Perez answers, “It is often associated with HIV infection. It sounds like you know something about HIV. Do you know anyone with HIV or this kind of cancer?”
Discussion Questions:
1. How was health literacy taken into account in the way that Dr. Perez described the lesion?
2. What do you think Dr. Perez is trying to achieve with this line of questioning? Would you approach Jerome in a different manner? If so, how? How would your approach consider health literacy issues?
3. What do you know about the Hispanic concept of machismo? If Jerome is influenced by machismo, how do you think it would affect his health literacy and his ability to understand a diagnosis of HIV? Do you think Dr. Perez is taking this—and other cultural factors—into consideration as she progresses in the discussion?
4. What do you think would be the best way to continue this conversation with Jerome? Would you consider offering him a chance to talk to a male provider? What kind of materials or referrals would be appropriate?
5. Based on the case study discussion, what strategies to address health literacy might you include in an action plan for Jerome’s care?
Case Study: Jerome
Facilitator’s Guide
Jerome is a 30-year-old Hispanic man who has presented at his dentist’s office with a complaint of “a sore on the roof of my mouth.” Dr. Perez has been Jerome’s dentist for several years. On initial examination, she sees a lesion on the hard palate that looks like a bruise the size of a pea. She explains her finding to Jerome by saying, “What you have on the roof of your mouth is a sore that could indicate that you have a kind of cancer called Kaposi’s sarcoma. Have you ever heard of Kaposi’s sarcoma?”
Jerome looks confused and says, “Isn’t that the kind of cancer gay guys get when they have HIV?” Dr. Perez answers, “It is often associated with HIV infection. It sounds like you know something about HIV. Do you know anyone with HIV or this kind of cancer?”
Discussion Questions:
1. How was health literacy taken into account in the way Dr. Perez described the lesion?
• This approach used some of Jerome’s own terminology “roof of my mouth” rather than
the clinical jargon that a dentist would use when talking to colleagues.
• She also used a more common term (cancer) to help Jerome understand what Kaposi’s
sarcoma (KS) really was.
• She was also careful to initiate a discussion by asking what he knew about KS before she
launched into a discussion about HIV infection, diagnosis and treatment options, or even a risk assessment.
2. What do you think Dr. Perez is trying to achieve with this line of questioning? Would you approach Jerome in a different manner? If so, how? How would your approach consider health literacy issues?
• Dr. Perez’s approach will provide an assessment of what Jerome knows, how he expresses himself, the terms he uses, and – most likely – his emotional reaction to the possibility of a diagnosis of HIV.
• She has also been careful not to provide any definite diagnosis at this point.
3. What do you know about the Hispanic concept of machismo? If Jerome is influenced by machismo, how do you think it would affect his health literacy and his ability to understand a diagnosis of HIV? Do you think Dr. Perez is taking this—and other cultural factors—into consideration as she progresses in the discussion?
• Machismo and its derivative, macho, are terms of Spanish origin that refer to prominently exhibited masculinity. As an attitude, machismo ranges from a personal sense of virility, to a belief that men have a right to seek extramarital adventures (while women are required to remain faithful), to the conviction that men are superior to women, to the certainty that sexual and domestic violence against women is often appropriate or justified. These beliefs can also influence definitions of sexual activity. A man who has sex with men is considered to be less than a man in cultures that adhere to macho belief systems. Men who have sex with men often explain their actions by saying that they are not gay and further justify this statement by only being the inserter (or top) during man on man sex. (Receivers-or bottoms-are considered to be gay and treated with contempt.)
• Given this cultural stance, there is a possibility that Jerome would have trouble discussing sensitive issues with Dr. Perez. Her approach to this situation is a sensitive way to initiate the discussion.
4. What do you think would be the best way to continue this conversation with Jerome? Would you consider offering him a chance to talk to a male provider? What kind of materials or referrals would be appropriate?
• We do not yet know if machismo will influence how Jerome will respond in this
situation. In the case so far, Dr. Perez and Jerome seem to be communicating well and the issues related to machismo may not be a problem. It would help, however, for Dr. Perez to tell Jerome that an HIV test is appropriate and to ask if he would be more comfortable talking to a male provider about it.
• One of the first goals for this case should be to get Jerome tested for HIV infection. If Dr. Perez cannot do HIV testing at her clinic, she should refer Jerome to a testing site. She should consider sites that would be easy for Jerome to travel to and those that offer free testing.
• Materials about HIV testing would be the most pertinent at this point. They should give a good overview of HIV testing without being too long or complex. The AIDS Infonet () is an excellent resource for easy to read fact sheets on a variety of HIV-related topics. An added advantage of this site is that the materials are available in English and Spanish.
5. Based on the case study discussion, what strategies to address health literacy might you include in an action plan for Jerome’s care?
• The foundation of an action plan to address health literacy falls under two of the
four core elements: empowerment/power dynamics and responsibility. It is the providers’ responsibility to empower the client by ensuring that he is able to make care and treatment decisions based on options, information, and understanding. It is the responsibility of the client to act on the information, once he clearly understands it.
• According to the U.S. Department of Health and Human Services, the following list of strategies can be incorporated in an action plan for client care:
o Use simple language, short sentences, and define technical terms.
o Supplement instruction with appropriate materials (videos, models, pictures, etc.) in the client’s primary language.
o Ask clients to explain your instructions (teach back method) or demonstrate the procedure.
o Ask open-ended questions. For example:
-What is your biggest concern now?
-Tell me what you know about HIV infection.
-Who do you think can help you with this information?
o Organize information so that the most important points stand out and repeat this information in a variety of ways.
o Respect the age, cultural, ethnic and racial diversity of the client.
o For a person with Limited English Proficiency (LEP), provide information in their primary language.
o Improve the physical environment by using universal symbols and posters in the primary languages of the client population.
o Offer assistance to complete forms.
Conclusions. Discuss Jerome's case in terms of each of the following health literacy elements:
1. Empowerment/power dynamics: Dr. Perez has a lot of power in this situation, but has chosen to move slowly in order to preserve Jerome’s personal and cultural dignity. This process will make it easier to help him achieve personal power in future health care encounters.
2. Assessment: Dr. Perez’s assessment is moving slowly because of her understanding of the cultural concept of machismo – which may or may not be a consideration in Jerome’s case, but it is easier to go slow than to create hostility. Her tactic of questioning and asking about what he knows will allow her to better understand his conception of HIV from a bio-psycho-social perspective.
3. Responsibility: Dr. Perez has assumed responsibility for assessing Jerome’s understanding of HIV and KS. Her approach is an indicator that she will continue to work with Jerome until he has a clear understanding of his options.
4. Team effort: We do not yet know about the team available in Dr. Perez’s clinic, but a team approach would be very helpful. Jerome may not be willing to continue discussing HIV, sexual practices, drug use, or other sensitive issues with a woman. If not, Dr. Perez will need to have resources such as other dental (male) care providers, health educators, testing and counseling experts, and medical providers.
Case Study: Sarah
Learner’s Guide
Sarah is a 17-year-old African American female who was diagnosed with HIV six months ago and is currently two months pregnant. At this visit, Dr. Patel, who is of East Indian descent, wishes to discuss Sarah’s decision to give birth and when to start antiretroviral therapy (ART). Dr. Patel also wants to discuss risk reduction behavior. Sarah admits to not using condoms because her boyfriend does not like them. She says she is scared to tell her family and her boyfriend that she is pregnant.
Dr. Patel tells Sarah that he would encourage her to start ART to protect her baby. Sarah does not want to take the medication and does not understand why she needs to take medication since she is not sick. He gives her a brochure concerning HIV treatment modalities. Sarah says she does not have time to read it and she is not interested in reading it because she is not sick.
Discussion Questions:
1. Are there health literacy issues when a provider and a client are from different cultures? Why or why not?
2. How can Dr. Patel explain HIV and its progression so that Sarah will understand?
3. How can Dr. Patel explain the treatment/prevention/risk reduction regimen for HIV?
4. What other issues should be considered based on the age of the client, access to services, and support systems?
5. Based on the case study discussion, what strategies to address health literacy might you include in an action plan for Sarah’s care?
Case Study: Sarah
Facilitator’s Guide
Sarah is a 17-year-old African American female who was diagnosed with HIV six months ago and is currently two months pregnant. At this visit, Dr. Patel, who is of East Indian descent, wishes to discuss Sarah’s decision to give birth and when to start antiretroviral therapy (ART). Dr. Patel also wants to discuss risk reduction behavior. Sarah admits to not using condoms because her boyfriend does not like them. She says she is scared to tell her family and her boyfriend that she is pregnant.
Dr. Patel tells Sarah that he would encourage her to start ART to protect her baby. Sarah does not want to take the medication and does not understand why she needs to take medication since she is not sick. He gives her a brochure concerning HIV treatment modalities. Sarah says she does not have time to read it and she is not interested in reading it because she is not sick.
Discussion Questions:
1. Are there health literacy issues when a provider and a client are from different cultures? Why or why not?
• Providers should be aware of personal assumptions about the clients’ health literacy.
• Dr. Patel should consider how Sarahs’ cultural beliefs may influence the provider-client interaction and the processing of health information.
2. How can Dr. Patel explain HIV and its progression so that Sarah will understand?
• He will have to explain what HIV is, how it progresses, and various treatment protocols. If there are youth support groups or peer educators, these may be helpful in Sarah’s case. She may be able to better communicate HIV infection with peers.
• How would an in-depth health literacy assessment assist in this process?
3. How can Dr. Patel explain the treatment/prevention/risk reduction regimen for HIV?
• Use plain language.§ Provide and review easy-to-read handouts or brochures.
• Ask Sarah to paraphrase information to assess her understanding of the discussion.
• Use other relevant clinic staff.
o Counselor: review treatment plan with Sarah and how to adhere to treatment plan.
o Health educator or peer educator: review and discuss risk reduction behaviors.
o Nurse: discuss how ART reduces the risk to the fetus while improving the mother’s health.
4. What other issues should be considered based on the age of the client, access to services, and support systems?
• Sarah is an adolescent and is also pregnant. She will have to work with other clinic staff to access services such as a counselor, case manger, and a support group/peer educator.
• She also needs help understanding her options related to caring for herself and her
baby.
5 Based on the case study discussion, what strategies to address health literacy might you include in an action plan for Sarah’s care?
• The foundation of an action plan to address health literacy falls under two of the
four core elements: empowerment/power dynamics and responsibility. It is the providers’ responsibility to empower the client by ensuring that he is able to make care and treatment decisions based on options, information, and understanding. It is the responsibility of the client to act on the information, once he clearly understands it.
• According to the U.S. Department of Health and Human Services, the following list of strategies can be incorporated in an action plan for client care:
o Use simple language, short sentences, and define technical terms.
o Supplement instruction with appropriate materials (videos, models, pictures, etc.) in the client’s primary language.
o Ask clients to explain your instructions (teach back method) or demonstrate the procedure.
o Ask open-ended questions. For example:
-What is your biggest concern now?
-Tell me what you know about HIV infection.
-Who do you think can help you with this information?
o Organize information so that the most important points stand out and repeat this information in a variety of ways.
o Respect the age, cultural, ethnic and racial diversity of the client.
o For a person with Limited English Proficiency (LEP), provide information in their primary language.
o Improve the physical environment by using universal symbols and posters in the primary languages of the client population.
o Offer assistance to complete forms.
Conclusions. Discuss Sarah's case in terms of each of the following health literacy elements:
1. Empowerment/power dynamics. Educating Sarah about HIV, treatment, pregnancy, and risk reduction behaviors will help her understand her health status and the role she can play in maintaining her health. However, Sarah may need additional support to help make healthy decisions. It may be especially difficult to address Sarah’s emotional response, her fears of disclosure, and her denial of the need for therapy.
2. Assessment. Sarah did not take an active role or accept the brochure. This could provide a starting point to assess Sarah’s level of health literacy. With that knowledge, Dr. Patel would be able to determine the barriers that prevent Sarah from following a treatment plan.
3. Responsibility: Dr. Patel should assume responsibility for assessing Sarah’s understanding of HIV, treatment protocols, and HIV effects on her pregnancy. The doctor and relevant clinic staff should then work with Sarah to help her make informed decisions about her health care.
4. Team effort: A team approach would be very useful in this situation. Dr. Patel has given Sarah a lot of information to process in a short period of time and it is clear from her comments that she has not yet integrated the diagnosis of HIV into her life. Other clinic staff can reinforce the learning process, answer questions, and provide support. Dr. Patel is challenging Sarah to take control of her treatment, but she will need additional supports to achieve that goal if it is even a goal that she considers relevant.
Case Study: Maria
Learner’s Handout
Maria is a 42-year-old Hispanic woman who reports to a rural clinic for her HIV test results. Maria’s primary language is Spanish, and she does not speak or read English. During the initial appointment, Maria met with Melissa, an HIV counselor, and Ana, the only certified interpreter at the clinic. When Melissa scheduled a follow-up appointment for Maria for this week, she knew that Ana was starting maternity leave and would not be available when Maria returned for her HIV test result. After much discussion, Maria, Melissa, and Ana decided that Maria would bring her older sister, Cristina, to the follow-up appointment to translate and to help with communication. Maria identified Cristina as a “safe and supportive” person and stated that “her English is pretty good.”
During the follow-up appointment, Melissa shares the HIV test results with both Maria and Cristina. As Melissa informs Cristina that her sister has tested positive for HIV, Cristina begins to cry. She translates the results to Maria, who also begins to cry.
Discussion Questions
1. What health literacy issues arise when working with a client who does not speak or read English?
2. What are the issues related to having a client’s family member serve as an interpreter? Is it ever appropriate? If so, how should the age, gender, and health literacy of family members be taken into consideration?
3. How can Melissa best manage the immediate situation, given the language barrier with Maria?
4. If placed in a similar situation and lacking a certified interpreter, what are some options for overcoming language barriers in a culturally sensitive manner? What resources are available in your care setting?
5. Based on the case study discussion, what strategies to address health literacy might you include in an action plan for Maria’s care?
Case Study: Maria
Facilitator’s Guide
Maria is a 42-year-old Hispanic woman who reports to a rural clinic for her HIV test results. Maria’s primary language is Spanish, and she does not speak or read English. During the initial appointment, Maria met with Melissa, an HIV counselor, and Ana, the only certified interpreter at the clinic. When Melissa scheduled a follow-up appointment for Maria for this week, she knew that Ana was starting maternity leave and would not be available when Maria returned for her HIV test result. After much discussion, Maria, Melissa, and Ana decided that Maria would bring her older sister, Cristina, to the follow-up appointment to translate and to help with communication. Maria identified Cristina as a “safe and supportive” person and stated that “her English is pretty good.”
During the follow-up appointment, Melissa shares the HIV test results with both Maria and Cristina. As Melissa informs Cristina that her sister has tested positive for HIV, Cristina begins to cry. She translates the results to Maria, who also begins to cry.
Discussion Questions
• What health literacy issues arise when working with a client who does not speak or read English?
• Melissa is unable to directly assess the health literacy of her client because of a language barrier. A certified interpreter should assist in this assessment process.
• Melissa, Ana, and Maria identify a family member as an interpreter, in the absence of the clinic’s certified interpreter. However, the health literacy and health beliefs of the family member, Cristina, are unknown and not assessed. In addition, Cristina’s English comprehension is unknown. Before any personal health information is shared, an assessment of Cristina’s understanding of English, health literacy, and health beliefs should be completed.
2. What are the issues related to having a client’s family member serve as an interpreter? Is it ever appropriate? If so, how should the age, gender, and health literacy of the family members be taken into consideration?
• Safety and confidentiality are major issues when client family members interpret—
especially when giving HIV test results. When a family member is used to translate, it is important to work with the client to ensure that this is safe, that confidentiality will be respected, and that the client has prepared the family member for what it is that they will be doing.
• If an individual does identify a family member as an interpreter, the age, gender, and health literacy level should be taken into consideration because these factors may influence how and what information is shared based on the level of development, dynamics of the relationship, and knowledge of HIV infection.
• A person with Limited English Proficiency (LEP) is defined as an individual who does not speak English as a primary language and who has a limited ability to read, write, speak, or understand English. Some people with LEP may feel more comfortable when a trusted family member or friend acts as an interpreter. When a person with LEP attempts to access services from an agency with federal financial assistance, a representative of the agency should make the client aware of the option of having the agency provide an interpreter without charge, or of using his/her own interpreter. Agencies should also consider special circumstances that may affect whether a family member or friend should serve as an interpreter, such as whether the situation is an emergency, and whether there are concerns over competency, confidentiality, privacy, or conflict of interest. Agencies cannot require people with LEP to use family members or friends as interpreters (U.S. Department of Health and Human Services, 2003).
3. How can Melissa best manage the immediate situation, given the language barrier with Maria?
• Assess Maria’s and Cristina’s understanding of HIV infection, HIV transmission, and HIV treatment. Reinforce the positive aspects of knowing one’s HIV positive status and that early treatment creates the potential for health and prolonged life.
• Empower Maria to take the necessary steps to access care and treatment as well as develop a strong network of social support.
• Refer Maria and Cristina to a mental health counselor, religious counselor, or other professional who can provide individual or family therapy.
• Acknowledge the eight fears commonly of concern for individuals dealing with a medical crisis (Koocher & Polin, 1994):
o Loss of control
o Loss of self-image
o Dependency
o Stigma
o Abandonment
o Expressing anger
o Isolation
o Death
4. If placed in a similar situation and lacking a certified interpreter, what are some other options for overcoming language barriers in a culturally sensitive manner? What resources are available in your care setting?
• Utilize telephone or web-based interpreter services.
• Develop a training program to enhance interpreter services available in the clinic.
• Identify and distribute resources such as the “I Speak” card, which is a language identification tool available in 13 languages. The “I Speak” card was developed by PALS for Health to enable the client to ask for an interpreter and help providers identify the language spoken by the client.
• Ask group members to share resources and procedures in their clinic sites.
5. Based on the case study discussion, what strategies to address health literacy might you include in an action plan for Maria’s care?
• The foundation of an action plan to address health literacy falls under two of the
four core elements: empowerment/power dynamics and responsibility. It is the providers’ responsibility to empower the client by ensuring that she is able to make care and treatment decisions based on options, information, and understanding. It is the responsibility of the client to act on the information, once she clearly understands it.
• According to the U.S. Department of Health and Human Services, the following list of strategies can be incorporated in an action plan for client care:
o Use simple language, short sentences, and define technical terms.
o Supplement instruction with appropriate materials (videos, models, pictures, etc.) in the client’s primary language.
o Ask clients to explain your instructions (teach back method) or demonstrate the procedure.
o Ask open-ended questions. For example:
-What is your biggest concern now?
-Tell me what you know about HIV infection.
-Who do you think can help you with this information?
o Organize information so that the most important points stand out and repeat this information in a variety of ways.
o Respect the age, cultural, ethnic and racial diversity of the client.
o For a client with LEP, provide information in their primary language.
o Improve the physical environment by using universal symbols and posters in the primary languages of the client population.
o Offer assistance to complete forms.
Conclusions. Discuss Maria’s case in terms of each of the following health literacy elements:
1. Empowerment/power dynamics: When language barriers exist, unique power dynamics may develop within the provider-interpreter relationship, provider-client relationship, and client-interpreter relationship. The provider depends on the interpreter to deliver health information in an empowering manner, but will be unable to directly evaluate if this is happening. The client depends upon the provider, and the provider’s organization, to identify reliable resources to assist in the communication process. The client also depends on the interpreter to accurately relay questions and concerns to the provider. This triangle of communication must be carefully planned to address these power constructs.
2. Assessment: Melissa must assess the health literacy and health beliefs of both Maria and Cristina to ensure that information related to Maria’s diagnosis is shared in an appropriate manner.
3. Responsibility: Melissa has a responsibility to provide interpreter services that are in
compliance with Title VI of the Civil Rights Act of 1964. The interpreter has the responsibility to accurately communicate information between Melissa and Maria. It is Maria’s responsibility to voice her questions and concerns so that an appropriate care plan can be developed.
4. Team effort: A team approach helped to ensure that appropriate interpreter services were in place for Maria. This approach should be extended all clinic staff to ensure that language barriers are addressed in a culturally sensitive manner from the time Maria’s initial appointment throughout her entire care and treatment experience.
Reference List
Berlin, E.A., & Fowkes Jr., W.C. (1983). A teaching framework for cross-cultural health care. The Western Journal of Medicine, 139(6), 934.
Bradley-Springer, L., Vojir, C., & Messeri, P. (2003). Hard-to-reach providers: Targeted HIV education by the National AIDS Education and Training Centers. Journal of the Association of Nurses in AIDS Care, 14 (6), 25-36.
Downer, A., & Swindells, S. (Eds.). (2003). Developing clinical case studies: A guide for teaching. Retrieved December 1, 2006,
Institute of Medicine. (April 2004). Report Brief on Health literacy: A prescription to end confusion. Retrieved December 6, 2006, from
Lim, R.F., & Lu, F. (2005). Clinical aspects of culture in the practice of psychiatry: assessment and treatment of culturally diverse clients. Medscape, Article 507208. Retrieved December 6, 2006, from
Lloyd, L.L.J., Ammary, N.J., Epstein, L.G., Johnson, R., & Rhee, K. (2006, July 1). A transdisciplinary approach to improve health literacy and reduce disparities. Health Promotion Practice, 7(3), 331-335. Retrieved December 6, 2006, from
Plain Language Action and Information Network. Definitions of Plain Language. Retrieved December 1, 2006, from
U.S. Department of Health and Human Services. (2002). Healthy people 2010, 2nd ed. McLean VA: International Medical Publishing.
U.S. Department of Health and Human Services, Health Resources and Services Administration. Health Literacy. Retrieved December 18, 2006, from
U.S. Department of Health and Human Services, Office for Civil Rights. (2003). Guidance to Federal Financial Assistance Recipients Regarding Title VI and the Prohibition Against National Origin Discrimination Affecting Limited English Proficient Persons – Summary. Retrieved January 8, 2007, from
Health Literacy Web-Based Resources
Websites and Web Pages
AIDS Education Training Centers (AETC) National Resource Center
Bridges to Excellence
George Washington University, Health Information Partners
Harvard School of Public Health, Department of Society, Human Development, and Health, Health Literacy Studies
Health Literacy Month
Healthy Roads Media
Institute for Healthcare Improvement
Institute of Medicine of the National Academies, Board on Neuroscience and Behavioral Health, Health Literacy
Let Everyone Participate
National Minority AIDS Education Training Center (NMAETC)
PALS for Health
Partnership for Clear Health Communication
United States National Library of Medicine, National Institutes of Health, Health Literacy
United States National Library of Medicine, National Institutes of Health, Understanding Health Literacy and its Barriers
U.S. Department of Health and Human Services, Health Resources and Services Administration, Cultural Competence Resources for Health Care Providers
U.S. Department of Health and Human Services, Health Resources and Services Administration, Health Literacy
U.S. Department of Health and Human Services, Office of Minority Health, A Family Physician’s Practical Guide to Culturally Competent Care
U.S. Department of Health and Human Services, National Institutes of Health, Improving Health Literacy
Reports, Manuals, and Guides
Covering Kids & Families National Program Office, Southern Institute on Children and Families, The Health Literacy Style Manual
Institute of Education Sciences, U.S. Department of Education, National Center for Education Statistics, The Health Literacy of America's Adults: Results from the 2003 National Assessment of Adult Literacy
U.S. Department of Health and Human Services, OPHS, Office of Minority Health, National Standards for Culturally and Linguistically Appropriate Services in Health Care: Final Report
U.S. Department of Health and Human Services, Health Resources and Services Administration, Transforming the Face of Health Professions Through Cultural and Linguistic Competence Education: The Role of the HRSA Centers of Excellence
Appendix A
Test of Functional Health Literacy in Adults (TOFHLA)
TOFHLA is a reading comprehension test that deals with how much the client understands from reading. It measures the functional literacy level of clients, using real-to-life health care materials. These materials include client education information, prescription bottle labels, registration forms, and instructions for diagnostic tests. The TOFHLA assesses two main constructs, numeracy and reading comprehension; it has a total of 67 items.
There are two additional versions of the TOFHLA: TOFHLA-S, a validated Spanish translation, and the S-TOFHLA, a short form that requires up to 12 minutes to administer. The short form is composed of four numeracy items and 36 reading comprehension items.
The TOFHLA is available for purchase from at $50.
Information obtained from Columbia University, School of Nursing Website at:
Appendix B
Rapid Estimate of Adult Literacy in Medicine (REALM)
The REALM is a medical-word recognition and pronunciation test comprising 66 medical terms, arranged in order of complexity by the number of syllables and pronunciation difficulty, starting with simple one-syllable words (eg, pill, eye) and ending with multisyllable words (eg, antibiotics, potassium). Clients read down the list, pronouncing aloud as many words as they can while the examiner scores the number of words pronounced correctly using standard dictionary pronunciation as the scoring standard. It can be administered and scored in under two minutes by personnel with minimal training, making it easy to use in clinical settings.
The REALM sample kit (instruction manual, laminated client word lists, scoring sheets) is available for purchase from Terry C. Davis, PhD ( LSU Medical Center, 1501 Kings Highway, Shreveport, LA 71130-3932, tdavis1@lsuhsc.edu).
Information obtained from Columbia University, School of Nursing Website at:
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[1] Plain language (also called Plain English) is clear, straightforward expression, using only as many words as are necessary. It is language that avoids obscurity, inflated vocabulary and convoluted sentence construction. It is not baby talk, nor is it a simplified version of the English language. (Retrieved December 1, 2006, from )
§ Plain language (also called Plain English) is clear, straightforward expression, using only as many words as are necessary. It is language that avoids obscurity, inflated vocabulary and convoluted sentence construction. It is not baby talk, nor is it a simplified version of the English language. (Retrieved December 1, 2006, from )
§ Plain language (also called Plain English) is clear, straightforward expression, using only as many words as are necessary. It is language that avoids obscurity, inflated vocabulary and convoluted sentence construction. It is not baby talk, nor is it a simplified version of the English language. (Retrieved December 1, 2006, from )
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