Communicating about Health Care: Observations from Persons Who Are Deaf or Hard of Hearing

Context Few studies describe communication between physicians and deaf or hard-of-hearing people. Contribution This qualitative study of 26 people who were deaf or hard of hearing suggests that patients and physicians may have varying views about what it means to be deaf and about effective communication modalities. It also identifies sev-eral consequences of inadequate communication with deaf and hard-of-hearing patients, including embarrassment, discomfort, fear, misdiagnosis, and medication errors. Cautions This small study conducted in 2 urban sites may not be generalizable to other deaf and hard-of-hearing patients and to different settings. The Editors Patient-centerednessrespect for and responsiveness to patients' preferences, needs, and valuesmust guide fundamental health care reform (1, 2). This laudable goal poses particular challenges for certain patient populations. Achieving patient-centered care requires complete and effective communication between clinicians and patients. Today, however, communication between clinicians and many persons who are deaf or hard of hearing falls far from this ideal. A growing literaturecommentaries (3-8) and small surveys of patients (9-11) or clinicians (12-14)compellingly documents important difficulties confronting persons who are deaf or hard of hearing. Medicare beneficiaries with impaired hearing report lower satisfaction with health care quality and access than do others (15, 16). Some deaf persons have fewer physician visits or mammograms than hearing individuals, although these differences vary by age at onset of deafness (17). In one study involving 14 elderly individuals who have been deaf since early childhood, interviewees reported many practical barriers to communicating with clinicians and office staff (18). Another study interviewed 54 deaf adults about mental health services; interviewees described communication difficulties posing major impediments to mental health care (19). We used group interviews (20-23) to gather detailed information from 26 persons who are deaf or hard of hearing about their health care experiences, as well as suggestions for improving care. Methods This study occurred within a larger project examining health care experiences of adults with disabling conditions, using quantitative (15, 16, 24-26) and qualitative research techniques. Moderator's Guide From our quantitative findings and literature reviews, we designed an interview addressing 8 topics: overall health care quality, access to primary care, access to specialized services, communication, accessibility experiences in physicians' offices, training physicians about disability accommodations, suggestions for designing accessible health care settings, and disseminating our results among persons with disabilities. To refine our interview procedures, we consulted an independent living center in Boston, Massachusetts, that targets the Deaf community. We also conducted 2 key informant interviews (23) with a physicianresearcher experienced in caring for deaf persons and a hearing American Sign Language expert. To pilot test the draft guide, we interviewed a skilled moderator who is deaf and uses sign language; she moderated the group interviews for deaf participants. The moderator's guide is available upon request. Constituting and Conducting the Group Interviews We conducted separate group interviews for men and women, convening 2 groups for deaf sign language users in Boston, Massachusetts (10 February 2001), and 2 groups for hard-of-hearing individuals in Washington, DC (15 and 16 May 2001). To recruit participants, we worked with the Boston independent living center and a hard-of-hearing advocacy group. The moderator and deaf interviewees communicated entirely in sign language without interruption, while 2 skilled interpreters simultaneously spoke their interpretation for researchers seated outside the group. Two video cameras recorded the proceedings, one taping interviewees and another recording the moderator. A hearing researcher moderated the interviews with hard-of-hearing respondents. To facilitate participation, we used assistive listening devices with microphones and simultaneous Communication Access Realtime Translation (27): An expert typed the proceedings using a court stenography machine, while computers translated this phonetic output real-time into English displayed on screens. The Committee on Clinical Investigations at Beth Israel Deaconess Medical Center approved this study, and participants gave written informed consent. Interviews lasted roughly 2 hours; participants received $75 at the conclusion. All names provided are pseudonyms. Analysis Interview audiotapes were transcribed verbatim. After reviewing transcripts, 2 researchers generated coding categories to facilitate analysis (available upon request). Using these categories, a researcher sorted the texts with NVivo software (QRS International, Melbourne, Australia). These 3 investigators independently analyzed the sorted texts and noted patterns about perceptions of health care (28, 29). We reached consensus during telephone discussions. Another author independently read the transcripts, confirming the validity of preliminary conclusions. Results Table 1 presents demographic information about the 26 interviewees. They identified several difficulties, particularly limited insurance coverage for hearing aids, audiology services, and prescription drugs. Most concerns, however, related to communication. Although interviewees described positive experiences, especially with their long-term physicians, most comments underscored problems, which are grouped broadly into 6 themes. Interviewees also suggested potential solutions (Table 2). Table 1. Characteristics of Interviewees by Focus Group Table 2. Interviewees' Suggestions for Improving Communication Conflicting Assumptions about Deafness Interviewees felt that most physicians, largely unconsciously, hold fundamental assumptions about deafness that, from the outset, undermine patientphysician relationships. In particular, physicians do not fully appreciate the totality of patients' lives and health concerns. Deaf and hard-of-hearing interviewees reported different perspectives on this theme. Deaf interviewees suggested that some physicians do not adequately respect patients' intelligence, motivation, and desire to understand and participate in their health care. As John reported: When I was in hospital [for GuillainBarr syndrome], 4 or 5 doctors would circle around my bed and talk about me. I didn't know what anybody was saying. They were touching me, they were checking me, they were talking about me, and I was lying there. Hearing people could at least hear what is going on and maybe have something to say about it, but not me. They come in, treat me like some object in a zoo, and leave. Interviewees thought that physicians do not comprehend the richness of Deaf cultural and linguistic identities. In particular, physicians seem unaware that American Sign Language has grammar and syntax different from English. Some interviewees learned English as a second language; they believed that physicians view them as stupid when they use faulty English. Respondents wondered why physicians repeatedly question them about what caused their deafness when hearing is irrelevant to their current health concerns. The medical community holds a pathologic view of deaf people, observed Faith. They don't see us as a linguistic minority. I don't identify myself as disabled. There's a certain kind of pity on us as deaf people. Most deaf respondents proudly noted their cultural affiliation and frustration when asked to make communication concessions. I deal with the hearing world every single day, 24/7, asserted Faith. I'm tired of writing notes and making do. Could hearing people imagine having to write down all their communication events, all day, every day? In contrast, hard-of-hearing respondents did not share a cultural identity. Several admitted that they themselves are ashamed, frustrated with, depressed, or in denial about progressively impaired hearing. According to Eric: When you wake up one day and you don't hear the refrigerator hum or you don't hear paper rustle, it's scary. You want to deny it, say it's temporary, just a head cold, you'll hear better later. But you don't. People just don't understand what it's like. Nevertheless, hard-of-hearing respondents also felt marginalized by physicians. Their own conflicting attitudes, however, sometimes impeded them from confronting physicians about communication problems. I don't hear in some situations, and I tend to withdraw, lose confidence, feel isolated, said Patricia. I wish medical personnel would take hearing loss more seriously. To them hearing loss is easy to deal with. They just talk louder at you. They don't truly have sensitivity or compassion for it. Conflicting Perceptions of Communication Modalities Both deaf and hard-of-hearing interviewees reported that physicians frequently require them to use inadequate modes of communication, such as reading lips, writing notes, or bringing family members to interpret. Physicians did not understand their responsibility to ensure effective communication and sometimes complained about costs or inconveniences of hiring interpreters or purchasing special equipment. When hiring interpreters, physicians often do not seek persons trained specifically in medical sign language. Some clinicians inappropriately maintain eye contact with the interpreter rather than the patient. Sometimes deaf persons have no way to communicate. Several deaf respondents described visiting emergency departments for acute problems (such as severe abdominal pain, arm injury, or new-onset GuillainBarr syndrome) that prevented them from signing. Without interpreters, patients were unaware of crucial information, precipitating emotions from frustration to terror. I was freaking out without an interprete