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To implement a role-reversal exercise to increase first-year pharmacy students' awareness of communication barriers in the health care setting, especially for deaf and hard-of-hearing patients.
Volunteers from the local deaf community conducted Deaf Strong Hospital, a role-reversal exercise in which students were the “patients.” Students navigated through a reception area, encounter with a physician, and having a prescription filled at a pharmacy without receiving or using any spoken language.
A debriefing session was held in which small groups of students had the opportunity to ask questions of a panel of deaf and hard-of-hearing volunteers. On a survey administered to assess students' learning, 97% agreed or strongly agreed that the experience would likely impact their attitudes and behavior in future interactions with patients who did not speak English.
The role-reversal exercise was an effective method of teaching students that the delivery of health care is dependent on adequate communication between health care providers and the patient.
Deaf Strong Hospital (DSH), an exercise in which hearing students act out illness scenarios in a simulated “hospital” staffed by deaf volunteers, was first established by medical students at the University of Rochester School of Medicine and Dentistry.1 Now in its eighth year, the program is conducted by the Centers for Disease Control (CDC)-funded National Center for Deaf Health Research (NCDHR) at the university. In collaboration with the NCDHR, Wegmans School of Pharmacy adapted the program for use with first-year pharmacy students in fall 2009 as part of the required Introduction to Diversity course. This collaboration marked the first time the program was offered outside the University of Rochester or to pharmacy students.
Approximately 28 million Americans (10% of the population) have a hearing impairment, and of those, 738,000 are profoundly deaf.2-4 There are important distinctions among people with hearing loss. People who are hard of hearing have deficits in their hearing, but can still obtain some useful information from spoken words. People who are deaf have an audiological lack of hearing. People who were deafened early in life, before the age of 3 years (prelingually), often use sign language as their primary means of communication.2 Hard-of-hearing and postlingually deafened people have been exposed to spoken English (eg, through interacting with their family or friends, or at school) and therefore may be comfortable with the English language. Some people who are deaf communicate orally or through visual information such as lip reading.2
The word Deaf refers to the culture and community of Deaf people, although not all people who are deaf consider themselves part of this culture.2 Within the Deaf culture, deafness is not viewed as a disability. To perceive a segment of the Deaf community, especially people who embrace their Deaf identity, in the disability context is counterproductive. Ideally, healthcare professionals who can hear should recognize that “overcoming deafness” is not a significant goal of Deaf patients. These providers would promote audical neutrality. Deaf culture is associated with shared history, values, and a common language. The primary language within the Deaf community is American Sign Language (ASL). ASL is distinct from English, having its own grammar, structure, and syntax.2 This can make direct translation of English (for example, in written notes) difficult for Deaf persons to understand.2 ASL does not have a written form and sign languages are distinct, like spoken languages. The sign languages used in other countries or even regionally, within the US, are distinguishable.4 There is minimal documented information on the number of Deaf people who use ASL as their primary language, but the total in the United States is estimated at 250,000 to 500,000.4 It is equally difficult to ascertain how many Deaf people are bilingual in that they use ASL as their primary language, but are also proficient in a written language such as English or Spanish. This lack of information reveals a significant flaw in how demographic data are collected and the necessity for targeted efforts to better identify and address the needs of this population.
There are many other socioeconomic factors to consider when working with the deaf community. On average, deaf people are poorer than other Americans. Approximately 44% of deaf adults did not graduate from high school, and only 5% graduated from college.4 Deaf high school seniors, on average, had a fourth- or fifth-grade English reading level.4 The deaf community shares many characteristics with other groups who do not use English as their first language (Table (Table11).
As with other language minority groups, communication is of one of the most significant obstacles to health care with deaf or hard-of-hearing patients. This applies not only to conversations between the health care provider and patient (or parent of patient), but also to situations such as calling the physician's office, pharmacy, or specialist.5 Within the pharmacy, communication challenges for the deaf or hard-of-hearing patient include understanding medical jargon, complex instructions for taking medication, and warnings about clinically significant adverse events. People who were deafened prelingually may have poor English skills, making reading and interpreting health information difficult. This may include understanding provider notes, prescription instructions, consent forms, and other health care-related documents.3 These communication barriers put deaf and hard-of-hearing patients at risk for medical errors.6 Patients with hearing loss report being afraid of the consequences of miscommunication with their health care providers.7 This sentiment is often reflected by other minority groups as well. Because English is a second language for many Deaf patients, it is important for the pharmacist and patient to agree on the best way to communicate. The pharmacist should frequently assess patient comprehension and also provide an environment that allows for communication through visual cues (Table (Table2).2). The ideal solution is for the pharmacy to have a medically trained interpreter available.2 Working with family members or untrained interpreters to communicate pharmacy information to a patient is not ideal because these individuals usually have limited medical knowledge and may screen the pharmacist's information to protect the patient from distressing news.8 Not working with a trained interpreter to communicate with Deaf patients may have a negative impact on patient care and can lead to higher hospital admission rates, increased testing, misdiagnosis, and improper treatment.2, 9-11
As the US population ages, healthcare providers will have to care for increasing numbers of deaf and hard-of-hearing patients. Providers should be aware that many deaf patients have had negative experiences within the health care setting.2,12 Our objectives for conducting the Deaf Strong Hospital program are to educate future practitioners on appropriate ways to communicate with deaf and hard-of-hearing patients, and to increase students' empathy towards all patients who have limited English language skills. Another objective was for students to experience the disempowerment that many patients feel within the medical setting when they cannot communicate in their primary language.
Through collaboration with the NCDHR and the Deaf community volunteers, Deaf Strong Hospital was conducted at the Wegmans School of Pharmacy at St. John Fisher College. Conducting the program required coordination between the school, NCDHR, and the deaf community. For effective execution, we appointed 4 program leaders (2 from NCDHR and 2 from the deaf community) who wrote all of the scenarios, assisted in organizing materials, ensured there was a sufficient number of volunteers, organized the panel discussion, and oversaw the flow of the program. On the day of the role-reversal exercise, 17 deaf community facilitators (including the 4 leaders) participated in both the DSH exercise and the small-group debriefings. Eight interpreters also were present to assist “patients” at Deaf Strong Hospital. The program was conducted at the college using the atrium, classroom, and study rooms.
Two days prior to the program, the college provided pharmacy students with instructions for fingerspelling the alphabet and a few basic signs in ASL, as well as reading materials on deafness as culture13 and learning objectives for the exercise (Table (Table3).3). To make the experience more authentic, students were not given specific instruction on the use of ASL. On the day Deaf Strong Hospital was conducted, program leaders provided students with basic information for navigating the “hospital,” including that they could not use their voices during the exercise. Program leaders also instructed the community volunteers to communicate with students in fluent ASL and to limit their use of spoken words and lip reading.
Program leaders provided each student with a color-coded sticker and a card for “step 1” that contained the information on where to go first. After completing the interaction at each station, a “hospital worker” gave the students an instruction card for the next step. Several scenarios were used for the exercise so the instructions on the cards varied. Which scenario a student followed was determined by the color of the sticker he/she had been given.
All students were directed through the waiting area, doctor's office, emergency room, and pharmacy during the activity. Additionally, many students encountered a specialist, such as a psychiatrist, dentist, or gastroenterologist. One sample scenario is provided (Table (Table4).4). Interpreters were provided only at select sites within the hospital as a demonstration of how interactions with medical personnel could be positively affected if they, as the patient, could communicate and understand the information being provided.
As students began the role-reversal exercise, they were again reminded that they were not allowed to use their voices, and signs stating this were posted throughout the “hospital.” Students were encouraged to use alternative methods of communication (writing, pantomiming, etc).
The benefit of role play exercises is that they allow students to experience the patient's perspective by feeling firsthand the effect of specific interactions.14 Additionally, role play exercises teach students to integrate their past knowledge and experiences to a novel situation in order to arrive at a creative solution.15
Students waited for receptionists who took their name, complaint, and insurance information. They were required to wait for their name to be “called” using fingerspelling. This mimics the experiences that many deaf and hard-of-hearing patients have in the health care system when they are forced to watch the receptionist's lips, waiting for their names to be spoken. Students who were in the waiting room for a prolonged time were given assistance by the volunteers so they could proceed to the next station.
The Deaf Strong Hospital exercise was initially designed so that the medical students had the longest interaction with the volunteers who were acting as either emergency or primary care physicians. When the program was adapted for pharmacy students, the prolonged interaction with the physician no longer became a point of emphasis. Pharmacy students spent equal amounts of time with each of the heath care providers. Students were instructed to communicate symptoms such as nausea, headache, or stomach pain without speaking. The volunteers often would make the students try several methods of explaining a symptom before acknowledging comprehension. The volunteer would then explain the diagnosis to the student in ASL, along with important instructions.
To illustrate the dangers associated with patients not understanding their prescriptions or the pharmacist's instructions, prescription bottles in the “pharmacy” were filled with a variety of different colored M&Ms as many medications come in various colors. Upon filling the student's “prescription,” the “pharmacist” instructed the “patient” about the number of tablets to take, how many times a day, and which color to take, and explained any expected side effects. In an extreme example, the student was told that taking the wrong colored M&M could be life-threatening. As in the interactions with the volunteer “physicians,” the inability to communicate concerns to the “pharmacist” was designed to elicit feelings of disempowerment and frustration in the students.
All students were instructed to ask for interpreter services at the reception desk, but most of these initial requests were denied and the student was told that the reason was he/she had not requested the interpreter service in advance. However, an interpreter was available to assist each student at 1 of the stations during the exercise so that students could understand the advantages and importance of providing this service to patients. The obvious change in the quality of care when an interpreter was present was purposeful and designed to highlight the importance of interpreting services in promoting improved cross-linguistic communication.
All students were required to sign their name to a surgical consent form before leaving the exercise. The form consisted of excerpts taken from an actual document used routinely at a local hospital for outpatient surgeries and procedures. Due to the complex nature of these forms, they are difficult for many patients to understand. For deaf patients the consent form can be particularly daunting because English may be their second language and they may have only a fourth- or fifth-grade English reading level. To demonstrate to the students this literacy and language barrier to receiving health care, the consent form was provided in Albanian, a language to which few if any students would have had exposure. Students were instructed to sign and present the form to their “healthcare provider.” The English translation of the form was:
I agree to other operations or treatments. My doctors may learn more in surgery. They may think I need other treatments. My doctors will decide in surgery. I agree to let them do the things they think are necessary. If I understand this form I will sign it using only my last name.
At the conclusion of the role-reversal exercise, students participated in a panel discussion. Included on the panel were community members who were hard of hearing (had a cochlear implant), early deaf, deaf and blind, or late deafened. Each panelist gave a brief introduction and described some of their personal interactions and frustrations with their pharmacists. Students were given an opportunity to ask questions throughout the presentation. During the discussion, the panelists gave students suggestions on how to make interactions with deaf or hard-of-hearing patients more productive. Alternate forms of communication also were encouraged because not all deaf and hard-of-hearing patients lip-read or read written English.
Prior to the student debriefing sessions, the 12 faculty facilitators, representing both pharmacy practice and pharmaceutical sciences, met with a NCDHR facilitator. This informational session provided faculty members with tips on communicating through an interpreter and with suggested topics for the small group discussion, including the program learning outcomes (Table (Table33).
The debriefing session was primarily an opportunity for the students to reflect on the experience. Students were encouraged to share their reactions to, frustrations with, and experiences at Deaf Strong Hospital with each other. Within the student debriefing groups a deaf community member and interpreter also were present to encourage additional student questions and reflection.
The learning outcomes for the program were included in the small-group debriefing sessions. Discussion was facilitated by the faculty members and Deaf community volunteers. Addressing the learning objectives in the debriefing session allowed the students to read the pre-assigned materials, participate in the DSH program, and listen to the panel discussion prior to self-assessing to determine whether they had achieved all of the outcomes. During these sessions, informal student comments were collected on student perceptions of the role-play exercise, the consent form, and the panel discussion.
Several students mentioned how the waiting room process was confusing and frustrating. Many were worried they would miss their name and would be left sitting in the waiting area. Because the students had only minimal familiarity with how to fingerspell, they often missed their first chance at an appointment with the “doctor” because they either did not see or did not recognize their name when it was called. Additionally, students commented that they proceeded through the stations without a clear idea of the extent of their health problem, or whether the provider understood the symptoms they were expressing.
Another part of the experience that the students found challenging was communicating through interpreter services. For many of the students this was their first exposure to this method of communication and students found it difficult to speak and look at the deaf “provider” as if the interpreter was not there. It requires practice to feel comfortable “ignoring” the interpreter.
Due to the language barrier presented by the consent form, many students were rendered functionally illiterate. Most of them signed their name without understanding any content of the form. Of the 76 students completing the form, none signed with only the last name as instructed. Only 3 refused to sign, and if the scenario had been real, they would not have received medical treatment as a result.
The students found it surprising and disheartening that every panelist stated that their opinions of pharmacists were low and that they all had negative experiences in a pharmacy. The primary suggestion from the panel to the students was to “come out from behind the counter.” Many of the deaf and hard-of-hearing patients rely on being able to use lip reading and/or facial cues to understand what a person is saying. The panelists explained that process was difficult when the pharmacist was talking to them from behind a computer screen or if their face was in shadows.
To address student learning for purposes of the pharmacy curriculum, we administered a survey on the learning objectives of the experience (Table (Table3.)3.) The average student response for the learning objectives was “I agree that I can perform” (score ranges from 4.2 - 4.4). The exceptions related to describing deaf culture and methods for obtaining informed consent (scores = 3.9 and 3.7, respectively).
NCDHR also provided their own survey of the program. Because NCDHR had conducted this exercise for many years with the University of Rochester medical students, the same survey medical students received also was administered to generate comparative data. This 13-item survey instrument assessed student learning and elicited students' opinions about the experience. The survey instrument was administered to students at the conclusion of the exercise (Table (Table5).5). Sixty-five (97%) pharmacy students agreed or strongly agreed with the statement (n=65) “My Deaf Strong Hospital experience is likely to positively impact my attitudes and behavior in future interactions with patients who do not speak English.” The NCDHR survey also asked students to provide 5 adjectives that represented their experience (Table (Table6).6). Many students felt that the experience was frustrating because they were not able to communicate important health information. However, they also found it to be educational and interesting.
Participation in all surveys was voluntary and anonymous. Not all of the 76 students in the P1 class responded to all survey questions. Permission to collect the survey data was provided by the Institutional Review Board at St. John Fisher College.
As part of the course requirements, students wrote 2-page reflections on their experiences during the Deaf Strong Hospital. The student reflections were based on what they believed the 3 key learning objectives were for the program. In these reflections, the students commented on their interest in taking an ASL course in order to better communicate with their patients. For example, one student wrote “In the future, I hope to take a course in American Sign Language so I can better help my patients. I would never want them to feel the way I did during parts of my experience.” Students also mentioned how the role reversal exercise helped them understand what it is like to have a communication barrier. One student commented “I am so happy that I was able to experience this [communication barrier] through the role playing that was set up for our class. Being told how difficult something is never compares to when you actually experience it.”
Surveys were conducted with the 12 faculty members who served as small group facilitators (Table (Table7).7). All faculty members strongly agreed that “DSH is a worthwhile addition to the pharmacy school curriculum and should be offered again”
We are fortunate to have the NCDHR only minutes away from the school of pharmacy. Throughout the process of planning this innovative program, we were able to rely on the center's past experiences and knowledge. We will continue to rely on NCDHR and the deaf community to act as volunteers for the program. We found that the program adapted well to pharmacy students. Having conducted the program once, we are in the position to expand it to include additional pharmacy specific scenarios (eg, how to deal with insurance problems) and to incorporate nursing students. In preparation for this, several faculty members from the nursing program at St. John Fisher College participated and observed the exercise.
This type of program would be easily transferable to another college or school of pharmacy. Establishing a relationship with a local deaf school or organization would provide the needed volunteers for a college or school to conduct the program.
We chose to conduct the program as part of the Introduction to Diversity course, which is a required course in the P1 year. In the future, we will consider advantages and disadvantages of moving the program to a communications course later in the curriculum. The benefit of continuing the exercise with the P1 class is that they are exposed to many different cultural competencies early in their pharmacy training. This exposure may translate to an increased comfort level with many diverse populations, as well as to improved patient care. The students begin experiential training early in the P2 year, so they would be armed with this knowledge ahead of these experiences. Although Deaf Strong Hospital deals specifically with deaf and hard-of-hearing patients, students may become more empathetic to other patient populations that do not speak English fluently after experiencing how it feels to be in a medical setting where you cannot communicate in the predominant language. Rochester, New York, has the largest deaf population per capita in the United States.1 Therefore, this population will be particularly relevant for many of our students as they enter pharmacy practice. However, every pharmacy in the country has patients who are deaf or hard of hearing, and the number will increase as the US population ages.
Student feedback on the program was positive. Students reported that participating in the DSH experience helped them achieve the stated learning objectives (Table (Table3).3). However, learning objectives pertaining to Deafness as a culture and obtaining informed consent received the lowest scores. We will revise the program for the spring 2011 class and include additional information for these objectives. In the future, it also will be important to include more pharmacy specific questions in the survey instrument and to compare cultural competencies in students before and after the exercise. The current P3 class also would be included in the survey on cultural competency, particularly with deaf patients, as they have not participated in the exercise and would serve as a control group.
Many of the suggestions for overcoming barriers to treatment are applicable to all groups who do not use English as their primary language, not just to deaf and hard-of-hearing patients. Education and training should be provided to all health care professionals on options for communication and on the legal rights of patients who do not speak English. Pharmacists must ensure that patients who do not use English as their primary language understand instructions for prescriptions, treatment, and follow-up orders. The Americans with Disabilities Act (ADA) of 1990, ensures access to services offered by private, state, and local government entities.16 The Act requires making reasonable accommodations to meet the needs of patients with disabilities. For deaf or hard-of-hearing patients, this may be accomplished through multiple means, including qualified interpreters, note writing, written materials, and telecommunications devices for deaf persons (sometimes called TDD or TTY). The healthcare provider and patient should consult together to identify the most appropriate accommodation. In some instances, that may only be ensured through the assistance of a qualified interpreter.
Health care delivery is dependent on adequate communication between health care providers and the patient. In order to improve pharmacist communications with deaf patients and other cultural and linguistic populations, Deaf Strong Hospital was presented to first-year pharmacy students. Cultural competency and communication are subjects that are difficult to teach in the traditional lecture format. The DSH experience provided an effective, eye-opening experience for students to increase their knowledge of the healthcare barriers that underserved patient populations experience and how best to communicate with these patients.
This program was funded by the Walgreen's Diversity Grant. This work was partially supported by Cooperative Agreement Numbers U48DP001910-01 and U48DP000031 from the Centers for Disease Control and Prevention (CDC). The article's content is solely the responsibility of the authors and does not necessarily represent the official views of the CDC. Steve Barnett is supported by grant KO8HS15700 from the Agency for Healthcare Research and Quality (AHRQ).
Thanks to Audrey Schell and Mistie Cramer, members of the Deaf Health Community Committee (a community partner of NCDHR). Their contributions to the creation and implementation of the Deaf Strong Hospital at St. John Fisher College were invaluable. The authors also thank Kimberly Kelstone, staff interpreter (NCDHR), for her assistance. Thanks to John Smillie Photography for the photographs of Deaf Strong Hospital.