ORIGINAL RESEARCH
Deaf adults and health care: Giving voice to their stories Kate Sheppard, PhD, RN, FNP, PMHNP-BC, FAANP (Clinical Associate Professor) College of Nursing, University of Arizona, Tucson, Arizona
Keywords Culture; health care; health disparities; primary care. Correspondence Kate Sheppard, PO BOX 767 Blairsden-Graeagle, CA 96103. E-mail: [email protected] (home), [email protected] (work) Received: 3 July 2013; accepted: 30 September 2013 doi: 10.1002/2327-6924.12087
Abstract Purpose: Deaf adults often experience significant healthcare disparities. This article gives voice to nine Deaf adults as they describe their lifelong experiences with health care. Data sources: Qualitative, hermeneutic interviews with nine culturally Deaf adults. Each participant was interviewed three times, aided by a certified American Sign Language interpreter. Conclusions: Participants recalled childhood memories of painful and frightening procedures to investigate the deafness, which frequently overshadowed emotional needs. Communication barriers between Deaf patients and providers left the patients not understanding the diagnosis or treatment, medication use, or side effects. Descriptions included distressing or embarrassing interactions, and cries for help gone unanswered. Consequently, minimal health promotion occurs and most participants rely on the emergency department for health care. Implications for practice: Deaf patients should be screened for physical, sexual, and emotional abuse at every healthcare encounter. Assessments should include social support and social resources. Specific questions about pain, sleep, appetite changes, suicidal thoughts, and interest may help to identify manifestations of illness and health. Certified interpreters may be useful during the healthcare encounter, but ultimately the Deaf patient is best positioned to identify the most comfortable or meaningful means of communication between patient and healthcare provider.
It’s my first time – and I tried to read his lips but couldn’t, and he’s doing things down there, and it hurts so much, and I’m scared, and I don’t understand why, I don’t understand what’s happening to me.
While this might sound like a description of sexual assault, it is actually a Deaf woman’s description of her first pelvic examination. Unfortunately, her experience is not unique; her story is merely one example of the discomfort frequently experienced by Deaf patients. Deaf adults often express feelings of embarrassment or shame in the healthcare setting and consequently many avoid health care altogether (Pereira & de Carvalho Fortes, 2010). Providing care to Deaf patients may cause healthcare providers such as nurse practitioners (NPs) to move out of their comfort area, especially when communication between provider and patient becomes difficult. Deaf patients may be neglected by members of the healthcare team. Communication challenges leave many Deaf 504
adults reluctant to seek care such as for mental health, despite a desire to receive such care (Fusick, 2008). While healthcare providers have historically defined deafness as a disability, most culturally Deaf adults consider themselves members of a nondisabled culture. Culturally Deaf adults typically lost their hearing at an early age, often prelingually (before the onset of speech development), and self-identify as members of the Deaf culture. Members of the Deaf culture share experiences, insight, humor, theatrical performances, and Deaf historical icons in a way that is unique to their culture. Most Deaf individuals consider the use of American Sign Language (ASL) as the foundation of the Deaf culture (Ford & Kent, 2013). The purpose of this article is to give voice to nine Deaf adults as they describe their experiences accessing and receiving health care. Aims are to describe healthcare experiences of childhood, healthcare access barriers, and communication barriers. The stories stem from interviews Journal of the American Association of Nurse Practitioners 26 (2014) 504–510 C 2013 American Association of Nurse Practitioners
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obtained during a qualitative study that explored depressive symptoms among culturally Deaf adults, in the words and language used by the culture. The manuscript follows the tradition of the Deaf culture (Ford & Kent, 2013) by using the upper case “D” to represent those who selfidentify as members of the Deaf culture. The lower case “d” is used to represent children or adults who do not consider themselves as members of the Deaf culture.
Background Approximately two or three of every 1000 children in the United States are born deaf, and most deaf babies are born to hearing parents (National Institute on Deafness and Other Communication Disorders [NIDCD], 2013). Many hearing parents are encouraged by educators to focus their child’s language acquisition on learning to lipread. However, even among the most skilled of speech readers, only 30% of what is spoken is actually visible on the lips. Furthermore, the use of ASL is known to promote earlier language development (National Association of the Deaf, 2013). Historically, healthcare providers have treated deafness as a condition that necessitates intervention. The deaf child often grows up being constantly poked, prodded, evaluated, and treated as a sick person rather than a healthy one. Providers often focus on the etiology of deafness while failing to address the emotional or interpersonal needs of the patient with hearing loss. Even years after the hearing loss, the etiology of deafness often overshadows the Deaf patient’s reason for seeking care (Wilkens & Hehir, 2008), and the patient may leave the primary care setting without ever having the chief concern addressed. Members of the Deaf culture do not believe that their deafness necessitates a cure, and most do not consider themselves as disabled (Wang, 2010). The difference in perspective may cause conflict between the provider and patient if the provider views the patient as disabled and the patient’s self-perception is that of belonging to a cultural minority. For Deaf patients, the greatest difficulty is in the area of communication. Deaf patients often have difficulty communicating with the healthcare team and system. As patients, Deaf individuals often fear medication errors, and have an overall distrust of healthcare providers especially if providers focus on deafness as a disability (Hoang, LaHousse, Nakaji, & Sadler, 2011). Deaf individuals may even undergo examinations and tests without understanding the purpose or nature of an exam or test such as a Papanicolau (PAP) smear (Orsi, Margellos-Anast, Perlman, Giloth, & Whitman, 2007). Consequently, many Deaf patients leave the healthcare setting feeling frus-
trated, discouraged, and believing that care has been substandard (Barnett, McKee, Smith, & Pearson, 2011). There are significant disparities in health promotion and health education for the Deaf. Members of the Deaf culture have severely limited access to health information obtained through common venues such as literature, radio, and television (Fellinger, Holzinger, & Pollard, 2012). Healthcare education is inadequate, unclear, and usually lacks meaning for Deaf adults (Fellinger et al., 2012; Pollard & Barnett, 2009). Additionally, Deaf adults often experience healthcare providers as lacking compassion and largely ignorant to the needs of the Deaf culture (Scheier, 2009). Healthcare encounters can be enhanced by using a certified ASL interpreter. Interpreters do more than merely translate to and from spoken English to ASL. Deaf individuals use facial expressions and body language to add meaning and context to ASL, therefore a certified ASL interpreter considers this paralanguage as an important part of the translation process. In the outpatient clinical setting, the majority of Deaf adults prefer to utilize a fluent ASL interpreter (Middleton et al., 2010). However, there may be situations in which a Deaf patient does not wish to have an interpreter present. As described in the literature, the greatest challenge between healthcare providers and culturally Deaf adults is communication. Communication problems are not related to intelligence but in the uniqueness of ASL as a visual language that may not be readily translated into English (Fusick, 2008). Differences in communication, culture, and linguistics between healthcare providers and their Deaf patients often lead to misinterpretation, misdiagnosis, and stereotyping. Such differences can also create confusion, misunderstanding, resentment, and frustration, and often ultimately cause Deaf individuals to avoid health care altogether and lead to poor health outcomes.
Method As part of a larger qualitative, hermeneutic study that explored depressive symptoms among Deaf adults, qualitative interviews were conducted with nine culturally Deaf adults. The study was approved by the human subjects, institutional review board at a large university in the western portion of the United States. Participants were recruited at that same location, and recruitment continued until saturation had occurred. Sampling was purposive; in order to best understand the experience, any deaf individual who self-identified as culturally Deaf and over the age of 18 was invited to participate in the study. To obtain informed consent, participants first viewed a videotape in which a certified ASL interpreter 505
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outlined the study purpose, procedure, risks, and benefits in ASL, participants asked questions or obtained clarification from the researcher, and then signed the written consent. Each participant was interviewed three times, and each interview lasted 30–60 min. Each interview was conducted in ASL, and certified ASL interpreters were present during each interview to insure accurate understanding. Questions were voiced in English, the interpreter used ASL to “sign” the questions, the participant responded in ASL, and the interpreter verbalized the responses in English. Self-reflection was done prior to each interview, in order to identify the researcher’s preunderstanding and prejudices (e.g., knowledge, awareness, experience, beliefs) of deafness, culture, and depressive symptoms. For example, the researcher anticipated that some Deaf participants might have some depression because of the hearing loss, and she had to consciously let the stories unfold and then consider how her anticipation might affect her interpretation. Continued reflection also enabled the researcher to consider the nature of her relationships with each participant as they shared their individual stories. Each interview began with a brief introduction in which the principal investigator communicated in ASL to describe her role as a nurse scientist. An open-ended question was posed, such as “Tell me about you.” The second interviews were used to pursue areas that appeared to hold significance for the participant. During the third interview, the participant’s central concerns were reviewed and emerging themes from early analysis were shared with the participants. This final interview helped to verify mutual understanding. All sessions were video-recorded to capture the facial expressions and body language used by Deaf adults to augment or emphasize communications. Tapes were reviewed with the researcher and ASL interpreter, and a second ASL interpreter reviewed randomly selected tapes to ensure accuracy of interpretation (Sheppard, 2011). All tapes were transcribed and used to generate text. Analysis began and continued throughout the interview process; this enabled incorporation of preunderstanding and expectations while engaging with the participants and interpreting meaning to their experiences. Further analysis led to four themes: feeling depressed, emotional chaos leading to depression, Deaf—not broken, and reaching out to others. The themes were derived from commonalities among the participants as they expressed emotions and related their concerns and experiences. Rigor was established through trustworthiness (the written reports include interpretations made during analysis), credibility (sharing findings with the participants 506
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during the third interview to validate the accuracy of mutual understanding), confirmability (established through three separate interviews), and objectivity (faithfully representing participant narratives). Pseudonyms are used throughout the narratives.
Findings Nine culturally Deaf adults participated in the study. They ranged in age from 21 to 62 (two male, seven female). All participants were born to hearing parents. All had completed high school, several had college degrees, and two held advanced degrees. Most participants were born deaf, but several lost their hearing as children. Reasons for early hearing loss included high fever, antibiotic use, and trauma. Further descriptive data on the subjects are withheld to protect the participants’ privacy because, despite living in a metropolitan area, the community of Deaf adults is small and too much information could compromise participants’ anonymity. Every participant related feeling different for most of his or her life, even within one’s family. Eight participants described their childhood as being spent in isolation. There was no sense of belonging, and all felt left out of important family events and conversations. None of the participants’ family members learned ASL, and this was related as “could not be bothered.” Most recalled feeling “broken” from an early age. Each participant voluntarily brought up the topic of health care. This was usually introduced as, “You’re a nurse – can I tell you what happened”? Stories of health care were often related with angry facial expressions, and some were recounted tearfully. Most participants shared that they were partially motivated to participate in the study to share their feelings of anger with a nurse. The following shared concerns stem from commonalities of life experiences. Theme # 1: Feeling depressed: This was defined as the physical and emotional components of depression. The symptoms described by the Deaf participants mirrored those described by hearing individuals. Theme # 2: Emotional chaos leading to depression: This theme was defined as experiences of childhood, adolescence, and adulthood that the participants believed led to their feelings of depression. All participants described feeling different and isolated as children and adults. Common experiences included feeling different from other family members, from hearing children, feeling excluded and isolated from conversations, feeling abandoned by parents, friends, or co-workers, and feeling abused. Theme # 3: Deaf—Not broken: This was defined as identifying with the Deaf culture. All related feeling proud
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to be a member of the Deaf culture and seven participants now actively work to promote the Deaf culture. All participants describe the moment of acceptance into the Deaf culture as they became fluent in ASL. Deaf membership also countered the social isolation and even helped reduce depressive symptoms. Theme #4: Reaching out: This was defined as learning to walk in the Deaf world while also navigating the hearing world. Common experiences that continually reinforced the lack of social support and exacerbated depressive symptoms included difficulties reaching out for health care, and unsuccessfully reaching for safety. The following discussion elaborates on this theme, especially when reaching out for health care.
Deaf adults as patients All participants described difficulty accessing health care, and described their healthcare encounters as often meaningless. Most expressed frustration with the healthcare system, and the lack of healthcare resources available to Deaf patients. Universal concerns included (a) not understanding how to obtain a referral for a specialist, and (b) being unable to locate a primary care or mental health provider willing to accept a Deaf patient. All described hospitals and provider offices as scary and intimidating, and nurses and doctors as frequently impatient. Many participants utilize a telephone relay system to contact an ambulance or try to schedule an appointment, which was described as frustrating. Several described frustration at making appointments. As Nora related:
Reflections of childhood health care All participants recalled repeated visits to doctors as parents and healthcare providers sought reasons for the deafness. As children, frequent examinations and painful procedures were experienced as frightening; recounting these experiences as adults elicited expressions of anger and frustration. Several described frustration or hurt that the adults focused on the etiology of deafness without ever addressing the child’s emotions. Occasionally, providers or parents did not believe the child was really deaf. Eileen endured numerous tests as the doctors tried to ascertain the etiology of her deafness. She believes that her parents lied to her about her hearing loss, when they promised every day that she would regain her hearing. Susannah remembers pain, loneliness, and not being believed by the doctor: The doctor turned to my mom and said, “Make her answer.” My mom said “she’s DEAF!” What made me so mad is that everyone focused on my physical, why am I deaf? – so I just kept my feelings to myself and withdrew.
Sometimes the child had an easier time accepting the deafness than did the parents or providers. Susannah recalls accepting her deafness and wanting to learn ASL; her mother and providers admonished her and said she was giving up. For her, the experience of being diagnosed was a source of frustration, anger, and hurt. Eileen had a similar experience and consequently believes that the process of diagnosis and treatment leaves children feeling broken. She related:
The medical perspective is very different about deafness – a lot of deaf kids grow up with that medical, that pathological perspective you know, mom and dad don’t understand, so the kids, they hear, they’re broken.
People, they don’t understand how to use the relay and how that goes and they just hang up on me and so I have to call again and again and say – please, and explain, I’ll be on the phone for 50 minutes just trying to ask for help.
Nurses, doctors, and office staff were described as frequently impatient. Sean’s reaction is to withdraw and not communicate, believing it is easier to just not even try; he related that he finds it easier to “dumb down.” Ciara considers it hard for a Deaf person to even ask for help. She depicted a frustrating experience with an NP’s receptionist: I always tell the lady I am Deaf, and one time I sat. I waited and waited. Other, other people in the room went back and I sat. I asked the lady [front office receptionist] why I hadn’t gone in yet. She said they called my name long time and now they can’t see me.
Most participants had seen an NP within the past few years. Perceptions were that NPs spent more time with the Deaf patient, but the patient still left the encounter feeling confused. Most left the provider office with minimal understanding of the diagnosis and many were confused as to the treatment or follow-up needed. Of those who had seen an NP, all expressed gratitude that the NP was “willing” to spend extra time and made effort to communicate. When given a medication, participants rarely understood the drug’s use or side effects. Often the focus of the visit became the etiology of deafness rather than the concerns of the patient. Participants underwent examinations and procedures without understanding what was being done or why. Norah described an encounter in which, at the age of 18 she sought care for acne; for reasons she did not understand, the provider conducted a pelvic exam. She found her experience so frightening and 507
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confusing that she has not seen a provider since; her experience was 25 years ago. No participant had ever been asked about thoughts of suicide. Two participants described years of selfmutilation such as wrist cutting, and related that their provider never asked about the visible cuts. Six participants described suicide attempts such as driving a vehicle over an embankment, cutting wrists, or overdose. Stories were invariably recounted with tears. Most participants were transported to an emergency department with their injuries, yet even in that setting none were asked about their feelings or thoughts. As Sean expressed, if no one asks him about his feelings, he does not think his feelings are important. Universally, the participants volunteered their desire to be asked about their feelings and even about thoughts of suicide. As a result of their experiences, none of the participants undergo health promotion examinations, and all described efforts to avoid healthcare providers. Several seek help from friends or family. Seven volunteered that when they experience difficulty sleeping, they rely on sleeping pills or alcohol rather than seek help from the healthcare system. All expressed that they would like to engage in health promotion but the perceived barriers in communication feel too overwhelming; participants view the emergency department as the most frequent place they access health care.
Communication barriers Differences in body language and eye contact between providers and Deaf patients may contribute to misunderstandings and discomfort. Eileen observed that hearing people such as healthcare providers often look around the room while talking, instead of making eye contact with her. She described this difference as unsettling and uncomfortable, because as a Deaf adult she must look the speaker in the face. Susannah finds it difficult to understand the significance of the information imparted by nurses or doctors because they “have a poker face”; as a Deaf adult she relies heavily on facial expressions and their meaning. She also feels that Deaf people are very blunt—“they just blurt it out.” She feels very uncomfortable when healthcare providers “beat around the bush” while relating important or emotional information. Even participants who consider themselves skilled at speech-reading (lip-reading) are unable to understand healthcare providers, especially when medical terminology is used. Joan describes herself as an excellent lip reader. She related having surgery and feeling afraid and unable to understand because all those in the operating room had masks covering their mouths; she did not understand what was being done or why, as she was unable 508
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to lip-read. She also related that pelvic exams were confusing, as the sheet draped over her knees made it impossible for her to read the provider’s lips. Several volunteered that when they asked to converse by writing, the provider was not willing to take the time. Eileen shared: Often hearing people think that they can voice and that I’ll understand them but, come on, I don’t. I want to know everything about my health – I don’t want to understand just 60% or 70% – I want to know 100% but my experience with doctors and nurses is they don’t want to write notes, um, maybe they’ll start and then they’ll give up, they’ll just talk. And I am lost!
Certified ASL interpreters may facilitate communication between the Deaf patient and the healthcare provider. However, issues of confidentiality when interpreter was present were described. Several identified the interpreter as a friend, and did not want the interpreter present when discussing suicide or depression. Four women stated they would not want the interpreter in the room during a pelvic examination. All believe they have the right to choose whether or not the interpreter is present, and most shared stories in which the interpreter was discouraged or even dismissed by the provider. The participant stories have overlapping concerns. Communication is challenging, and without understanding what is happening, uncomfortable procedures become frightening. While these Deaf adults may desire mental health care and health promotion, they are at a loss as to how to access care and when care is obtained it is too often meaningless.
Discussion The participants in this study believe their health care is substandard. In fact, these findings are consistent with research showing that culturally Deaf adults do not have the same quality healthcare experiences as hearing people (Barnett et al., 2011). Most study participants expressed frustration, and even fear of health care and providers; negative encounters between Deaf patient and hearing providers held such significance that none of the study participants undergo health promotive exams and even shun health care entirely. Many Deaf women report negative or shameful experiences of health care and therefore avoid health promotion activities (Pereira & de Carvalho Fortes, 2010). Rather than develop a healthcare relationship that fosters continuity of care, many Deaf patients utilize busy hospital emergency departments. As described by some of the participants, this situation is not perceived as helpful or desired but is seen as inevitable. Without a Deaf adult role model, deaf children may accept the judgment of parents and other adults that the child is a medical anomaly rather than a whole person
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(Wilkens & Hehir, 2008). In the phrases expressed by some participants in this study, the adults’ focus on the deafness as disability left the deaf child feeling broken and damaged. Often the self-perception of damage continued well into adulthood. Consistent with the literature (Orsi et al., 2007), communication barriers were a source of frustration. Frustration intensified when a Deaf adult felt concerned about his or her physical health but felt unsure as to how best to obtain the health care and information needed. Participants usually left the healthcare encounter without fully understanding the diagnosis or treatment plan, and often without their concern or reason for seeking care being addressed. In general, Deaf patients have high risk of impulsivity, self-harm, and substance abuse disorders, and yet are significantly underserved in mental health care (Landsberger & Diaz, 2010). Some of the participant stories included childhood sexual or physical abuse; such experiences may have led to posttraumatic stress, especially if no intervention or support was obtained. Additionally, while many participants volunteered past or present symptoms of psychiatric disorders or mental health concerns, none had ever been asked about symptoms of distress. Finally, six participants manifested suicidality or self-mutilation but were never asked about symptoms, thoughts, intentions, or emotions (Sheppard & Badger, 2010).
Study limitations Recruitment was geographically confined to two states. Within those states, the Deaf community is relatively small and very tight-knit. Most of the participants had heard about the nurse who wanted to talk to Deaf people. It is possible that participants were biased by their desire to talk to a nurse who wanted to hear their stories. A number of participants described anger at the government, with educators, and/or with healthcare providers, therefore the study may have attracted more participants who wish to air their concerns. Finally, the findings from the qualitative interviews cannot be generalized to all culturally Deaf adults, but the participants’ stories and experiences can help to illuminate the challenges often faced by Deaf adults in a healthcare setting.
samples must be taken from populations beyond welleducated college students.
Recommendations for healthcare providers Whenever possible, healthcare providers should inquire as to the Deaf patient’s childhood and environment, as well as childhood friends, family support, and school years. Open-ended questions may provide less information than asking about specific symptoms such as pain, appetite change, or difficulty sleeping. Deaf patients should be asked directly about suicidal thoughts and gestures, and domestic violence. Deaf individuals communicate in a visual way; lack of verbalization should not be seen as reflecting literacy, lack of symptoms, or understanding. Deaf adults use facial expressions and gestures that may seem extreme to those unfamiliar with the culture; providers should ask for clarification rather than unintentionally misinterpret meaning. Not all Deaf adults read, write, or comprehend at the same level. Even for the most skilled lip-reader, much of the dialogue and context is missed, especially when healthcare terminology is used. The Deaf patient must be able to visualize the provider’s face, and if this is not possible, an alternative method of communication should be made available. This should be considered during a pelvic exam or a surgical procedure. Asking the Deaf patient how best to meet the communication needs may help to reduce pain and fear and facilitate patient understanding.
Conclusion Participants in this study did not expect healthcare providers to use ASL or even communicate in fingerspelling but did ask for ample time to interact with nurses and doctors so that their healthcare experiences are understood and have meaning. As NPs, we can strive to improve communication and enhance the healthcare experience for Deaf adults, which will help to reduce morbidity and mortality in this underserved population.
Acknowledgment The author wishes to acknowledge Dr. Terry Badger for her continued support and guidance.
Future research The findings from this study illustrate the need to develop and test culturally valid and reliable screening mechanisms to identify Deaf adults at risk for depression, abuse, and suicidality. In order to establish instrument validity and reliability for the general Deaf population,
References Barnett, S., McKee, M., Smith, S., & Pearson, T. (2011). Deaf sign language users, health inequities, and public health: Opportunity for social justice. Preventing Chronic Disease, 8(2). A 45. Retrieved from http://www.cdc. gov/pcd/issues/2011/mar/10 0065.htm. Accessed March, 2013.
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Fellinger, J., Holzinger, D., & Pollard, R. (2012). Mental health of deaf people: Communication breakdown. Lancet, 39(9820), 979. Ford, H., & Kent, S. (2013). The experiences of bilingualism within the Deaf and the Hearing world: The views of d/Deaf young people. Deafness and Education International, 15(1), 29–51. Fusick, L. (2008). Serving clients with hearing loss: Best practices in mental health counseling. Journal of Counseling & Development, 86(1), 102–110. Hoang, L., LaHousse, S. F., Nakaji, M. C., & Sadler, G. R. (2011). Assessing deaf cultural competency of physicians and medical students. Journal of Cancer Education, 26(1), 175–182. Landsberger, S., & Diaz, D. (2010). Inpatient psychiatric treatment of Deaf adults: Demographic and diagnostic comparisons with hearing inpatients. Psychiatric Services, 61(2), 196–199. Middleton, A., Turner, G., Bitner-Glindzicz, M., Lewis, P., Richards, M., & Stephens, M. (2010). Preferences for communication in clinic from deaf people: A cross-sectional study. Journal of Evaluation in Clinical Practice, 16(4), 811–817. National Association of the Deaf. (2013). Sign language for parents. Retrieved from http://www.nad.org/keywords:deafandsignlanguage National Institute on Deafness and Other Communication Disorders (NIDCD). (2013). Statistics and epidemiology. Retrieved from http://www.nidcd.nih. gov/Pages/default.aspx
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Orsi, J., Margellos-Anast, H., Perlman, T., Giloth, B., & Whitman, S. (2007). Cancer screening knowledge, attitudes, and behaviors among culturally Deaf adults: Implications for informed decision making. Cancer Detection and Prevention, 31(6), 474–479. Pereira, P. C., & de Carvalho Fortes, P. (2010). Communication and information barriers to health assistance for deaf patients. American Annals of the Deaf, 155(1), 31–37. Pollard, R., & Barnett, S. (2009). Health-related vocabulary knowledge among deaf adults. Rehabilitation Psychology, 54(2), 182–185. Scheier, D. (2009). Barriers to health care for people with hearing loss: A review of the literature. Journal of the New York State Nurses Association, 40(1), 4–10. Sheppard, K. (2011). Lessons learned: Translating ASL-English in research settings. Journal of Transcultural Nursing, 22(2), 129–134. Sheppard, K., & Badger, T. (2010). Depressive symptoms among culturally Deaf adults. Journal of Psychiatric and Mental Health Nursing, 17(9), 783–789. Wang, Y. (2010). Without boundaries: An inquiry into Deaf epistemologies through a metaparadigm. American Annals of the Deaf, 154(5), 428–434. Wilkens, C., & Hehir, T. (2008). Deaf education and bridging social capital: A theoretical approach. American Annals of the Deaf, 153(3), 275–284.
Deaf adults and health care: Giving voice to their stories Kate Sheppard, PhD, RN, FNP, PMHNP-BC, FAANP (Clinical Associate Professor) College of Nursing, University of Arizona, Tucson, Arizona
Keywords Culture; health care; health disparities; primary care. Correspondence Kate Sheppard, PO BOX 767 Blairsden-Graeagle, CA 96103. E-mail: [email protected] (home), [email protected] (work) Received: 3 July 2013; accepted: 30 September 2013 doi: 10.1002/2327-6924.12087
Abstract Purpose: Deaf adults often experience significant healthcare disparities. This article gives voice to nine Deaf adults as they describe their lifelong experiences with health care. Data sources: Qualitative, hermeneutic interviews with nine culturally Deaf adults. Each participant was interviewed three times, aided by a certified American Sign Language interpreter. Conclusions: Participants recalled childhood memories of painful and frightening procedures to investigate the deafness, which frequently overshadowed emotional needs. Communication barriers between Deaf patients and providers left the patients not understanding the diagnosis or treatment, medication use, or side effects. Descriptions included distressing or embarrassing interactions, and cries for help gone unanswered. Consequently, minimal health promotion occurs and most participants rely on the emergency department for health care. Implications for practice: Deaf patients should be screened for physical, sexual, and emotional abuse at every healthcare encounter. Assessments should include social support and social resources. Specific questions about pain, sleep, appetite changes, suicidal thoughts, and interest may help to identify manifestations of illness and health. Certified interpreters may be useful during the healthcare encounter, but ultimately the Deaf patient is best positioned to identify the most comfortable or meaningful means of communication between patient and healthcare provider.
It’s my first time – and I tried to read his lips but couldn’t, and he’s doing things down there, and it hurts so much, and I’m scared, and I don’t understand why, I don’t understand what’s happening to me.
While this might sound like a description of sexual assault, it is actually a Deaf woman’s description of her first pelvic examination. Unfortunately, her experience is not unique; her story is merely one example of the discomfort frequently experienced by Deaf patients. Deaf adults often express feelings of embarrassment or shame in the healthcare setting and consequently many avoid health care altogether (Pereira & de Carvalho Fortes, 2010). Providing care to Deaf patients may cause healthcare providers such as nurse practitioners (NPs) to move out of their comfort area, especially when communication between provider and patient becomes difficult. Deaf patients may be neglected by members of the healthcare team. Communication challenges leave many Deaf 504
adults reluctant to seek care such as for mental health, despite a desire to receive such care (Fusick, 2008). While healthcare providers have historically defined deafness as a disability, most culturally Deaf adults consider themselves members of a nondisabled culture. Culturally Deaf adults typically lost their hearing at an early age, often prelingually (before the onset of speech development), and self-identify as members of the Deaf culture. Members of the Deaf culture share experiences, insight, humor, theatrical performances, and Deaf historical icons in a way that is unique to their culture. Most Deaf individuals consider the use of American Sign Language (ASL) as the foundation of the Deaf culture (Ford & Kent, 2013). The purpose of this article is to give voice to nine Deaf adults as they describe their experiences accessing and receiving health care. Aims are to describe healthcare experiences of childhood, healthcare access barriers, and communication barriers. The stories stem from interviews Journal of the American Association of Nurse Practitioners 26 (2014) 504–510 C 2013 American Association of Nurse Practitioners
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K. Sheppard
obtained during a qualitative study that explored depressive symptoms among culturally Deaf adults, in the words and language used by the culture. The manuscript follows the tradition of the Deaf culture (Ford & Kent, 2013) by using the upper case “D” to represent those who selfidentify as members of the Deaf culture. The lower case “d” is used to represent children or adults who do not consider themselves as members of the Deaf culture.
Background Approximately two or three of every 1000 children in the United States are born deaf, and most deaf babies are born to hearing parents (National Institute on Deafness and Other Communication Disorders [NIDCD], 2013). Many hearing parents are encouraged by educators to focus their child’s language acquisition on learning to lipread. However, even among the most skilled of speech readers, only 30% of what is spoken is actually visible on the lips. Furthermore, the use of ASL is known to promote earlier language development (National Association of the Deaf, 2013). Historically, healthcare providers have treated deafness as a condition that necessitates intervention. The deaf child often grows up being constantly poked, prodded, evaluated, and treated as a sick person rather than a healthy one. Providers often focus on the etiology of deafness while failing to address the emotional or interpersonal needs of the patient with hearing loss. Even years after the hearing loss, the etiology of deafness often overshadows the Deaf patient’s reason for seeking care (Wilkens & Hehir, 2008), and the patient may leave the primary care setting without ever having the chief concern addressed. Members of the Deaf culture do not believe that their deafness necessitates a cure, and most do not consider themselves as disabled (Wang, 2010). The difference in perspective may cause conflict between the provider and patient if the provider views the patient as disabled and the patient’s self-perception is that of belonging to a cultural minority. For Deaf patients, the greatest difficulty is in the area of communication. Deaf patients often have difficulty communicating with the healthcare team and system. As patients, Deaf individuals often fear medication errors, and have an overall distrust of healthcare providers especially if providers focus on deafness as a disability (Hoang, LaHousse, Nakaji, & Sadler, 2011). Deaf individuals may even undergo examinations and tests without understanding the purpose or nature of an exam or test such as a Papanicolau (PAP) smear (Orsi, Margellos-Anast, Perlman, Giloth, & Whitman, 2007). Consequently, many Deaf patients leave the healthcare setting feeling frus-
trated, discouraged, and believing that care has been substandard (Barnett, McKee, Smith, & Pearson, 2011). There are significant disparities in health promotion and health education for the Deaf. Members of the Deaf culture have severely limited access to health information obtained through common venues such as literature, radio, and television (Fellinger, Holzinger, & Pollard, 2012). Healthcare education is inadequate, unclear, and usually lacks meaning for Deaf adults (Fellinger et al., 2012; Pollard & Barnett, 2009). Additionally, Deaf adults often experience healthcare providers as lacking compassion and largely ignorant to the needs of the Deaf culture (Scheier, 2009). Healthcare encounters can be enhanced by using a certified ASL interpreter. Interpreters do more than merely translate to and from spoken English to ASL. Deaf individuals use facial expressions and body language to add meaning and context to ASL, therefore a certified ASL interpreter considers this paralanguage as an important part of the translation process. In the outpatient clinical setting, the majority of Deaf adults prefer to utilize a fluent ASL interpreter (Middleton et al., 2010). However, there may be situations in which a Deaf patient does not wish to have an interpreter present. As described in the literature, the greatest challenge between healthcare providers and culturally Deaf adults is communication. Communication problems are not related to intelligence but in the uniqueness of ASL as a visual language that may not be readily translated into English (Fusick, 2008). Differences in communication, culture, and linguistics between healthcare providers and their Deaf patients often lead to misinterpretation, misdiagnosis, and stereotyping. Such differences can also create confusion, misunderstanding, resentment, and frustration, and often ultimately cause Deaf individuals to avoid health care altogether and lead to poor health outcomes.
Method As part of a larger qualitative, hermeneutic study that explored depressive symptoms among Deaf adults, qualitative interviews were conducted with nine culturally Deaf adults. The study was approved by the human subjects, institutional review board at a large university in the western portion of the United States. Participants were recruited at that same location, and recruitment continued until saturation had occurred. Sampling was purposive; in order to best understand the experience, any deaf individual who self-identified as culturally Deaf and over the age of 18 was invited to participate in the study. To obtain informed consent, participants first viewed a videotape in which a certified ASL interpreter 505
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outlined the study purpose, procedure, risks, and benefits in ASL, participants asked questions or obtained clarification from the researcher, and then signed the written consent. Each participant was interviewed three times, and each interview lasted 30–60 min. Each interview was conducted in ASL, and certified ASL interpreters were present during each interview to insure accurate understanding. Questions were voiced in English, the interpreter used ASL to “sign” the questions, the participant responded in ASL, and the interpreter verbalized the responses in English. Self-reflection was done prior to each interview, in order to identify the researcher’s preunderstanding and prejudices (e.g., knowledge, awareness, experience, beliefs) of deafness, culture, and depressive symptoms. For example, the researcher anticipated that some Deaf participants might have some depression because of the hearing loss, and she had to consciously let the stories unfold and then consider how her anticipation might affect her interpretation. Continued reflection also enabled the researcher to consider the nature of her relationships with each participant as they shared their individual stories. Each interview began with a brief introduction in which the principal investigator communicated in ASL to describe her role as a nurse scientist. An open-ended question was posed, such as “Tell me about you.” The second interviews were used to pursue areas that appeared to hold significance for the participant. During the third interview, the participant’s central concerns were reviewed and emerging themes from early analysis were shared with the participants. This final interview helped to verify mutual understanding. All sessions were video-recorded to capture the facial expressions and body language used by Deaf adults to augment or emphasize communications. Tapes were reviewed with the researcher and ASL interpreter, and a second ASL interpreter reviewed randomly selected tapes to ensure accuracy of interpretation (Sheppard, 2011). All tapes were transcribed and used to generate text. Analysis began and continued throughout the interview process; this enabled incorporation of preunderstanding and expectations while engaging with the participants and interpreting meaning to their experiences. Further analysis led to four themes: feeling depressed, emotional chaos leading to depression, Deaf—not broken, and reaching out to others. The themes were derived from commonalities among the participants as they expressed emotions and related their concerns and experiences. Rigor was established through trustworthiness (the written reports include interpretations made during analysis), credibility (sharing findings with the participants 506
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during the third interview to validate the accuracy of mutual understanding), confirmability (established through three separate interviews), and objectivity (faithfully representing participant narratives). Pseudonyms are used throughout the narratives.
Findings Nine culturally Deaf adults participated in the study. They ranged in age from 21 to 62 (two male, seven female). All participants were born to hearing parents. All had completed high school, several had college degrees, and two held advanced degrees. Most participants were born deaf, but several lost their hearing as children. Reasons for early hearing loss included high fever, antibiotic use, and trauma. Further descriptive data on the subjects are withheld to protect the participants’ privacy because, despite living in a metropolitan area, the community of Deaf adults is small and too much information could compromise participants’ anonymity. Every participant related feeling different for most of his or her life, even within one’s family. Eight participants described their childhood as being spent in isolation. There was no sense of belonging, and all felt left out of important family events and conversations. None of the participants’ family members learned ASL, and this was related as “could not be bothered.” Most recalled feeling “broken” from an early age. Each participant voluntarily brought up the topic of health care. This was usually introduced as, “You’re a nurse – can I tell you what happened”? Stories of health care were often related with angry facial expressions, and some were recounted tearfully. Most participants shared that they were partially motivated to participate in the study to share their feelings of anger with a nurse. The following shared concerns stem from commonalities of life experiences. Theme # 1: Feeling depressed: This was defined as the physical and emotional components of depression. The symptoms described by the Deaf participants mirrored those described by hearing individuals. Theme # 2: Emotional chaos leading to depression: This theme was defined as experiences of childhood, adolescence, and adulthood that the participants believed led to their feelings of depression. All participants described feeling different and isolated as children and adults. Common experiences included feeling different from other family members, from hearing children, feeling excluded and isolated from conversations, feeling abandoned by parents, friends, or co-workers, and feeling abused. Theme # 3: Deaf—Not broken: This was defined as identifying with the Deaf culture. All related feeling proud
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to be a member of the Deaf culture and seven participants now actively work to promote the Deaf culture. All participants describe the moment of acceptance into the Deaf culture as they became fluent in ASL. Deaf membership also countered the social isolation and even helped reduce depressive symptoms. Theme #4: Reaching out: This was defined as learning to walk in the Deaf world while also navigating the hearing world. Common experiences that continually reinforced the lack of social support and exacerbated depressive symptoms included difficulties reaching out for health care, and unsuccessfully reaching for safety. The following discussion elaborates on this theme, especially when reaching out for health care.
Deaf adults as patients All participants described difficulty accessing health care, and described their healthcare encounters as often meaningless. Most expressed frustration with the healthcare system, and the lack of healthcare resources available to Deaf patients. Universal concerns included (a) not understanding how to obtain a referral for a specialist, and (b) being unable to locate a primary care or mental health provider willing to accept a Deaf patient. All described hospitals and provider offices as scary and intimidating, and nurses and doctors as frequently impatient. Many participants utilize a telephone relay system to contact an ambulance or try to schedule an appointment, which was described as frustrating. Several described frustration at making appointments. As Nora related:
Reflections of childhood health care All participants recalled repeated visits to doctors as parents and healthcare providers sought reasons for the deafness. As children, frequent examinations and painful procedures were experienced as frightening; recounting these experiences as adults elicited expressions of anger and frustration. Several described frustration or hurt that the adults focused on the etiology of deafness without ever addressing the child’s emotions. Occasionally, providers or parents did not believe the child was really deaf. Eileen endured numerous tests as the doctors tried to ascertain the etiology of her deafness. She believes that her parents lied to her about her hearing loss, when they promised every day that she would regain her hearing. Susannah remembers pain, loneliness, and not being believed by the doctor: The doctor turned to my mom and said, “Make her answer.” My mom said “she’s DEAF!” What made me so mad is that everyone focused on my physical, why am I deaf? – so I just kept my feelings to myself and withdrew.
Sometimes the child had an easier time accepting the deafness than did the parents or providers. Susannah recalls accepting her deafness and wanting to learn ASL; her mother and providers admonished her and said she was giving up. For her, the experience of being diagnosed was a source of frustration, anger, and hurt. Eileen had a similar experience and consequently believes that the process of diagnosis and treatment leaves children feeling broken. She related:
The medical perspective is very different about deafness – a lot of deaf kids grow up with that medical, that pathological perspective you know, mom and dad don’t understand, so the kids, they hear, they’re broken.
People, they don’t understand how to use the relay and how that goes and they just hang up on me and so I have to call again and again and say – please, and explain, I’ll be on the phone for 50 minutes just trying to ask for help.
Nurses, doctors, and office staff were described as frequently impatient. Sean’s reaction is to withdraw and not communicate, believing it is easier to just not even try; he related that he finds it easier to “dumb down.” Ciara considers it hard for a Deaf person to even ask for help. She depicted a frustrating experience with an NP’s receptionist: I always tell the lady I am Deaf, and one time I sat. I waited and waited. Other, other people in the room went back and I sat. I asked the lady [front office receptionist] why I hadn’t gone in yet. She said they called my name long time and now they can’t see me.
Most participants had seen an NP within the past few years. Perceptions were that NPs spent more time with the Deaf patient, but the patient still left the encounter feeling confused. Most left the provider office with minimal understanding of the diagnosis and many were confused as to the treatment or follow-up needed. Of those who had seen an NP, all expressed gratitude that the NP was “willing” to spend extra time and made effort to communicate. When given a medication, participants rarely understood the drug’s use or side effects. Often the focus of the visit became the etiology of deafness rather than the concerns of the patient. Participants underwent examinations and procedures without understanding what was being done or why. Norah described an encounter in which, at the age of 18 she sought care for acne; for reasons she did not understand, the provider conducted a pelvic exam. She found her experience so frightening and 507
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confusing that she has not seen a provider since; her experience was 25 years ago. No participant had ever been asked about thoughts of suicide. Two participants described years of selfmutilation such as wrist cutting, and related that their provider never asked about the visible cuts. Six participants described suicide attempts such as driving a vehicle over an embankment, cutting wrists, or overdose. Stories were invariably recounted with tears. Most participants were transported to an emergency department with their injuries, yet even in that setting none were asked about their feelings or thoughts. As Sean expressed, if no one asks him about his feelings, he does not think his feelings are important. Universally, the participants volunteered their desire to be asked about their feelings and even about thoughts of suicide. As a result of their experiences, none of the participants undergo health promotion examinations, and all described efforts to avoid healthcare providers. Several seek help from friends or family. Seven volunteered that when they experience difficulty sleeping, they rely on sleeping pills or alcohol rather than seek help from the healthcare system. All expressed that they would like to engage in health promotion but the perceived barriers in communication feel too overwhelming; participants view the emergency department as the most frequent place they access health care.
Communication barriers Differences in body language and eye contact between providers and Deaf patients may contribute to misunderstandings and discomfort. Eileen observed that hearing people such as healthcare providers often look around the room while talking, instead of making eye contact with her. She described this difference as unsettling and uncomfortable, because as a Deaf adult she must look the speaker in the face. Susannah finds it difficult to understand the significance of the information imparted by nurses or doctors because they “have a poker face”; as a Deaf adult she relies heavily on facial expressions and their meaning. She also feels that Deaf people are very blunt—“they just blurt it out.” She feels very uncomfortable when healthcare providers “beat around the bush” while relating important or emotional information. Even participants who consider themselves skilled at speech-reading (lip-reading) are unable to understand healthcare providers, especially when medical terminology is used. Joan describes herself as an excellent lip reader. She related having surgery and feeling afraid and unable to understand because all those in the operating room had masks covering their mouths; she did not understand what was being done or why, as she was unable 508
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to lip-read. She also related that pelvic exams were confusing, as the sheet draped over her knees made it impossible for her to read the provider’s lips. Several volunteered that when they asked to converse by writing, the provider was not willing to take the time. Eileen shared: Often hearing people think that they can voice and that I’ll understand them but, come on, I don’t. I want to know everything about my health – I don’t want to understand just 60% or 70% – I want to know 100% but my experience with doctors and nurses is they don’t want to write notes, um, maybe they’ll start and then they’ll give up, they’ll just talk. And I am lost!
Certified ASL interpreters may facilitate communication between the Deaf patient and the healthcare provider. However, issues of confidentiality when interpreter was present were described. Several identified the interpreter as a friend, and did not want the interpreter present when discussing suicide or depression. Four women stated they would not want the interpreter in the room during a pelvic examination. All believe they have the right to choose whether or not the interpreter is present, and most shared stories in which the interpreter was discouraged or even dismissed by the provider. The participant stories have overlapping concerns. Communication is challenging, and without understanding what is happening, uncomfortable procedures become frightening. While these Deaf adults may desire mental health care and health promotion, they are at a loss as to how to access care and when care is obtained it is too often meaningless.
Discussion The participants in this study believe their health care is substandard. In fact, these findings are consistent with research showing that culturally Deaf adults do not have the same quality healthcare experiences as hearing people (Barnett et al., 2011). Most study participants expressed frustration, and even fear of health care and providers; negative encounters between Deaf patient and hearing providers held such significance that none of the study participants undergo health promotive exams and even shun health care entirely. Many Deaf women report negative or shameful experiences of health care and therefore avoid health promotion activities (Pereira & de Carvalho Fortes, 2010). Rather than develop a healthcare relationship that fosters continuity of care, many Deaf patients utilize busy hospital emergency departments. As described by some of the participants, this situation is not perceived as helpful or desired but is seen as inevitable. Without a Deaf adult role model, deaf children may accept the judgment of parents and other adults that the child is a medical anomaly rather than a whole person
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(Wilkens & Hehir, 2008). In the phrases expressed by some participants in this study, the adults’ focus on the deafness as disability left the deaf child feeling broken and damaged. Often the self-perception of damage continued well into adulthood. Consistent with the literature (Orsi et al., 2007), communication barriers were a source of frustration. Frustration intensified when a Deaf adult felt concerned about his or her physical health but felt unsure as to how best to obtain the health care and information needed. Participants usually left the healthcare encounter without fully understanding the diagnosis or treatment plan, and often without their concern or reason for seeking care being addressed. In general, Deaf patients have high risk of impulsivity, self-harm, and substance abuse disorders, and yet are significantly underserved in mental health care (Landsberger & Diaz, 2010). Some of the participant stories included childhood sexual or physical abuse; such experiences may have led to posttraumatic stress, especially if no intervention or support was obtained. Additionally, while many participants volunteered past or present symptoms of psychiatric disorders or mental health concerns, none had ever been asked about symptoms of distress. Finally, six participants manifested suicidality or self-mutilation but were never asked about symptoms, thoughts, intentions, or emotions (Sheppard & Badger, 2010).
Study limitations Recruitment was geographically confined to two states. Within those states, the Deaf community is relatively small and very tight-knit. Most of the participants had heard about the nurse who wanted to talk to Deaf people. It is possible that participants were biased by their desire to talk to a nurse who wanted to hear their stories. A number of participants described anger at the government, with educators, and/or with healthcare providers, therefore the study may have attracted more participants who wish to air their concerns. Finally, the findings from the qualitative interviews cannot be generalized to all culturally Deaf adults, but the participants’ stories and experiences can help to illuminate the challenges often faced by Deaf adults in a healthcare setting.
samples must be taken from populations beyond welleducated college students.
Recommendations for healthcare providers Whenever possible, healthcare providers should inquire as to the Deaf patient’s childhood and environment, as well as childhood friends, family support, and school years. Open-ended questions may provide less information than asking about specific symptoms such as pain, appetite change, or difficulty sleeping. Deaf patients should be asked directly about suicidal thoughts and gestures, and domestic violence. Deaf individuals communicate in a visual way; lack of verbalization should not be seen as reflecting literacy, lack of symptoms, or understanding. Deaf adults use facial expressions and gestures that may seem extreme to those unfamiliar with the culture; providers should ask for clarification rather than unintentionally misinterpret meaning. Not all Deaf adults read, write, or comprehend at the same level. Even for the most skilled lip-reader, much of the dialogue and context is missed, especially when healthcare terminology is used. The Deaf patient must be able to visualize the provider’s face, and if this is not possible, an alternative method of communication should be made available. This should be considered during a pelvic exam or a surgical procedure. Asking the Deaf patient how best to meet the communication needs may help to reduce pain and fear and facilitate patient understanding.
Conclusion Participants in this study did not expect healthcare providers to use ASL or even communicate in fingerspelling but did ask for ample time to interact with nurses and doctors so that their healthcare experiences are understood and have meaning. As NPs, we can strive to improve communication and enhance the healthcare experience for Deaf adults, which will help to reduce morbidity and mortality in this underserved population.
Acknowledgment The author wishes to acknowledge Dr. Terry Badger for her continued support and guidance.
Future research The findings from this study illustrate the need to develop and test culturally valid and reliable screening mechanisms to identify Deaf adults at risk for depression, abuse, and suicidality. In order to establish instrument validity and reliability for the general Deaf population,
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