Ivy, a registered nurse at a community hospital, receives her morning report on a 65-year-old female Roman Catholic patient. Mrs. Vine∗ is diagnosed with hydrocephalus and deafness. Ivy reviews the physician's orders for medication and treatment, then develops a care plan based on her assessment of Mrs. Vine, but she senses that communication due to her patient's deafness may be a challenge. Mrs. Vine is writing on a notepad to communicate, and Ivy reads that Mrs. Vine is worried about her upcoming lumbar puncture. Ivy is wondering how to care holistically for Mrs. Vine and lessen her anxiety; she calls family members to help, but none are available. Unable to communicate adequately, Ivy silently prays for Mrs. Vine while caring for her in her room and attempts to be fully present with knowing looks, nonverbal expressions of empathy, and caring touch as appropriate, in addition to writing on the notepad. She wonders, however, if this was all she could do.
Effective communication is requisite to effective healthcare (Vermeir et al., 2015). Not only is it requisite to communicate with patients to inform or educate them about physical or emotional health, it is often necessary to provide spiritual care (Pfeiffer et al., 2014). Although a nurse can communicate empathy, respect, and compassion nonverbally, verbal communication is also beneficial for the exchange of information about religious resources or beliefs affecting healthcare. Thus, how can nurses communicate with patients who live with deafness or hearing impairment? In particular, how can nurses provide spiritual support when they cannot verbally communicate with a patient who is deaf? This article provides information and practical strategies for nurses to consider regarding the spiritual needs of persons with deafness.
SPIRITUALITY AND NURSING CARE
Nurses are expected to address the needs of patients holistically, including patients' spiritual needs as they relate to health. Spirituality is increasingly recognized as an essential component of health and well-being (Chirico, 2016; Steinhauser et al., 2017). A concept analysis of the literature about spirituality in health concluded with the following definition for spirituality: “A way of being in the world in which a person feels a sense of connectedness to self, others, and/or a higher power or nature; a sense of meaning in life; and transcendence beyond self, everyday living, and suffering” (Weathers et al., 2016, p. 93). Most agree that spirituality prompts people to seek meaningful lives; spirituality may be enhanced or expressed through religious beliefs and practices as well as artistic endeavors and philosophy (van Leeuwen et al., 2013). Such a conceptualization of spirituality suggests that it transcends all aspects of life; this pervasive force can energize someone to face adversities. Koenig (2015) proposes that spirituality is at the core of religion, a set of rituals, practices, and customs of the divine or the transcendent.
Given this understanding of spirituality and its impact on patients, how do nurses view spiritual care? The American Nurses Association and the Health Ministries Association have defined spiritual care as “interventions, individual or communal, that facilitate the ability to experience the integration of the body, mind, and spirit to achieve wholeness, health, and a sense of connection to self, others, and a Higher Power” (2017, p. 38). Sawatzky and Pesut (2005) advised that “spiritual nursing care should promote integration of all aspects of a patient's life through the discovery of meaning amid life's circumstances” (p. 28). Thus, nursing care in any setting ought to involve both caring for the physical aspects of patients' lives and also support of their discovery of purpose and how that fits into living with a health challenge.
Nurse-provided spiritual care is often thought to include such practices as screening or assessment of patient's spiritual or religious needs and resources, and the planning, delivery, and evaluation of therapeutic actions (e.g., story listening, supporting expressive art, facilitating religious rituals such as prayer; Taylor, 2008). Most therapeutics, however, typically involve verbal communication. Whereas communicating with patients about spiritual matters often can be uncomfortable and difficult for nurses, communicating with patients who cannot hear may be daunting, especially when the topic is as private and sensitive as many spiritual and religious topics are.
One in eight people in the United States (i.e., 30 million) aged 12 years or older has a hearing loss in both ears (Lin et al., 2011; National Institute on Deafness and Other Communication Disorders [NIDCD], 2016). In the United States, two or three of every 1,000 babies are affected by some hearing deficit in one or both ears (Centers for Disease Control and Prevention, 2010). On average, more than 90% of children with deafness are born to hearing parents (Mitchell & Karchmer, 2004; NIDCD, 2016).
Individuals with a sensory loss appear to have a compensatory enhancement of the remaining senses. For those who are deaf, other senses are magnified. Bates (2012) proposed there is a rewiring of the brain and suggested that the area of the brain related to the missing sensory input instead processes other sensory stimulation.
Different types of deafness exist. This article focuses on the Deaf (with a capital D), a term that labels the group or culture of people born with the auditory impairment. Deafness (lower case d) refers to the physical condition of deafness and individuals affected by deafness (lower case d) who, although profoundly deaf, do not usually consider themselves a part of the Deaf community because they were not born with the impairment (Velonaki et al., 2015).
A major issue of the Deaf community is communication with the hearing world. Helen Adams Keller (1880-1968), an American woman affected by blindness and deafness when she was 19 months old, after a serious acute illness, became well-known for learning to read and speak despite her impairments. She believed deafness was the worst sensory impairment because it meant “the loss of the most vital stimulus—the sound of the voice that brings language, sets thoughts astir and keeps us in the intellectual company of man” (Keller, 1933, p. 68). Keller, however, also believed that those with deafness need not to be alienated or isolated; she recognized that deafness “does not remove their share of the things that count—service, friendship, humor, imagination, and wisdom” (Keller, 1908, p. 103).
Keller (1908) observed that when one of a person's senses is absent, at times there is a need to enlist that sense embodied in another:
It might seem that the five senses would work intelligently together only when resident in the same body. Yet when two or three are left unaided, they reach out for their complements in another body, and find that they yoke easily with the borrowed team. When my hand aches from overtouching, I find relief in the sight of another. When my mind lags, wearied with the strain of forcing out thoughts about dark, musicless, colorless, detached substance, it recovers its elasticity as soon as I resort to the powers of another mind which commands light, harmony, color. Now, if the five senses will not remain disassociated, the life of the deaf-blind cannot be severed from the life of the seeing, hearing race.(p. 103)
Keller's observation suggests how nurses can tend the needs of the Deaf community by being the borrowed, needed senses for impaired patients. Unless the person with deafness learns how to communicate with others and cope with the impairment, the resulting isolation can be a health detriment.
Communication strategies available for the Deaf community include written language, spoken language (lip reading), cued speech (usage of mixed mouth movements of speech with hand movements), and sign language. American Sign Language (ASL) depends on visual communication (NIDCD, 2019). The starting point of communication with the hearing disabled, however, is to confirm with patients and family what means of communication they are using and then, as much as possible, implement those techniques.
To communicate with the outside world, individuals with deafness may need interpreters. Members of the Deaf community prefer professional interpreters when dealing with healthcare personnel. Trustworthy friends and family members who are efficient in understanding the medical language can be helpful, but may not be appropriate for discussing the patient's medical care.
Other services used for communication are the Video Relay Service (VRS) without a fee and Video Remote Interpreting (VRI) that requires a fee (Minnesota Department of Human Services, 2019). VRS and VRI allow for a person who is deaf, hard of hearing, or speech impaired to communicate with the hearing world over a computer or video telephone using a sign language interpreter. The nonhearing person and the interpreter communicate using sign language through a video link. The sign language interpreter relates the message to the hearing person without using text or typing. The Deaf community expects certain social standards related to the communication and the nurse must be aware of these, including linguistic accommodation, trust, respect, privacy, confidentiality, information, and dissemination (Meador & Zazove, 2005).
- Linguistic accommodation means that translators must be available to the Deaf. Also, in contrast with spoken English, their ASL communication starts with the main subject and moves to less important topics (Meador & Zazove, 2005). In the United States, English is usually a second language for the Deaf (Mathews et al., 2011; Meador & Zazove, 2005).
- Trust must be earned by the nurse who cares for patients who are Deaf. Given the general mistrust among the Deaf community toward the hearing world (Kuenburg et al., 2016; Meador & Zazove, 2005), nurses may need to work from the beginning to gain their trust. Nurses should remember that no one, including people with deafness, wants to be excluded from conversations; exclusion suggests secrecy and is interpreted as rude (Meador & Zazove, 2005).
- Respect is particularly important because often persons who are Deaf have been stigmatized as “dumb” (Meador & Zazove, 2005). Historically, many hearing people have equated deafness with intellectual impairment (Meador & Zazove, 2005). Although many among the Deaf community may comprehend and speak English only at the fifth-grade level because they lack sentence formation skills, vocabulary, and knowledge common to hearing people, this fact is no indication of their native intelligence (Richardson, 2014).
- Privacy and confidentiality are desired by the Deaf as much as hearing persons. Sometimes, the violation of this right has made them refuse participation in research or with visiting healthcare providers unless they are critically sick (Boness, 2016; Meador & Zazove, 2005). It is essential for nurses to use their intuition and tact to anticipate the needs of patients with deafness and act proactively. This action should increase the confidence of the Deaf community to seek help when sick.
- Information and its judicious dissemination are likewise prized by persons with deafness. They want to know what the healthcare team is learning about their health and want that information disseminated only in ways they approve (Meador & Zazove, 2005). Although the Health Insurance Portability and Accountability Act (HIPAA) guidelines enforce prudent use of anyone's health information, patients who are Deaf may be particularly prone to anxiety in this regard (Boness, 2016). Nurses play a pivotal role in conveying information and answering questions.
In the nurse–patient scenario involving Ivy and Mrs. Vine, Ivy's practice also can be characterized as using some concepts of servant leadership to surmount some communication challenges with persons who are deaf. Ivy, as a Christian nurse, believes that her vocation is to serve patients, as Jesus demonstrated. He “came not to be served, but to serve, and to give his life as a ransom for many” (Mark 10:45, NIV). This approach allows the servant leader to empower others through openness and mutual respect, loving care, and self-sacrifice (Greenleaf, 2016). Blanchard and Hodges (2016) posited that servant leadership is “a transformational journey” that involves “aligning our hearts, heads, hands, and habits” (p. 35). When these four domains are aligned, one's perspective changes and authentic relationships develop.
Servant leadership is initiated within a nurse's heart, according to Blanchard and Hodges (2016). Because in her heart are respect, compassion, and a desire to empower Mrs. Vine, Ivy prayed silently, expressing a yearning for Jesus to guide her. Her framing of nursing as servant leadership in this instance also prompted her to consider how communication with Mrs. Vine could occur at its best.
ADDRESSING SPIRITUAL CARE
Little is known about the spiritual perspectives and needs of people living with a disability in general (Selway & Ashman, 1998). Descriptions are scarce about spirituality among those in the Deaf community. As it is already a challenge to communicate effectively due to the language barrier and their different culture (Hommes et al., 2018), nurses face a greater challenge to care for these individuals on a spiritual level.
Availability of religious organizations is limited for the Deaf community. “Though there are hundreds of sign languages, none have a full Bible translation, and just two percent of deaf people around the world have access to the Gospels in their sign languages” (Shellnutt, 2019). About 400 to 500 sign languages exist worldwide (Entinger, 2014). For the Deaf person who is Christian, the Deaf Missions Training Center offers some resources. For example, the Training Center has translated the Bible from the original Hebrew and Greek texts into the American Sign Language Version (ASLV). This ASL version of the Bible can be downloaded onto a person's electronic device (Entinger, 2014). Nurses may request from their chaplaincy department that the ASLV of the Bible or part of the New Testament be available for patients. Deaf patients can learn about the Deaf Missions services and find a list of Deaf churches in their communities online at Deaf Missions.com (https://www.deafmissions.com/about) and Deaf Church Where! (https://www.deafchurchwhere.com/map/). Several Christian denominations have churches for the Deaf on the Internet. Moreover, nurses may use the resources listed in Table 1 and Figures 1, 2, and 3.
Members of the Deaf community, however, may feel isolated from those with hearing when they can't talk in a spoken language and participate in song services, games, and plays, unless they have an interpreter. Thus, many don't attend church services and feel alienated from the community of believers (Barclay et al., 2012; Entinger, 2014). Some Deaf communities have their own churches and worship services and are able to enjoy Scripture explained to them by members who are Deaf, as well as enjoying the fellowship of believers who are Deaf. These churches for the Deaf may better meet the cultural, social, and spiritual needs of this population (Barclay et al., 2012).
Dialogue continues, however, as to whether or not the integration of the Deaf community within hearing communities is of benefit to deaf persons. One thought is that integration can allow learning from one another. For example, if a deaf person walks into a church and sees a section in front of the church reserved for deaf individuals and an interpreter, that visitor will likely feel included. Others contend that those with deafness need to have separate churches because their needs are different and few congregations are outfitted to address the needs of those with deafness (Barclay et al., 2012; Branch-Smith, 2014).
How can nurses assess and identify spiritual needs of patients who are Deaf? How can they promote spiritual well-being? Table 1 provides practical tips that begin to answer these questions. However, the “spiritual caring moments” that nurse theorist Jean Watson (2011) promoted are elemental. The spiritual caring practices of love, kindness, inner harmony, authenticity, and fostering a spiritual practice toward wholeness are what create the caring–healing atmosphere for patients. Spiritual care may, therefore, involve an intentional presence and a heartfelt spiritual moment (Lazenby, 2017). With such a stance toward spiritual care, it is impossible for the nurse to assume a “Messianic” view of nursing. That is, no nurse should attempt to be an “end all” for the patient, but rather should be active in networking or coordinating effective spiritual care. The goal is to address the patient's needs and not have the nurse's personal spiritual or religious issues be detrimental to patient care.
HELEN KELLER'S EXAMPLE
Helen Keller's (Keller & Silverman, 2000) beliefs blended Christianity and universalism:
I found that ‘Jesus’ stands for divine good, good wrought into deeds, and ‘Christ’ symbolizes Divine Truth, sending forth new thought, new life, and joy in the minds of all people, therefore no one who believes in God and lives right is ever condemned.(p. 88)
Although Keller's spiritual mindset was not based solely on biblical truth, her life is exemplary in many ways that can potentially help those serving persons with deafness; for that reason, Keller's spiritual journey is capsulized here.
Keller was introduced to God through spiritual readings. Nurses can advocate on behalf of the patients who would like spiritual literature by calling the Deaf Mission Service for materials or informing the chaplain who can call. Advocating for availability of an ASLV Bible or New Testament portions is important so these materials can be distributed to patients who request them.
Also, Keller experienced the divine as one who loves all people regardless of their spiritual beliefs or creed. Her theology was summed up in acting in goodwill, understanding others, and serving all regardless of creed, physical ailments, religion, or social circumstances (Keller & Silverman, 2000). Because she completed higher education, Keller was able to write about her spiritual journey and how God shaped her life. This fact begs the question of how persons with deafness who are unable to receive much education experience God. It may be that when nurses introduce or promote education that will enhance the reading and analytical abilities of the Deaf, they may be indirectly fostering skills that will allow for theological insight. However, education does not predispose people to know God: He can be experienced profoundly by humans without formal education. As Keller wrote, “The best and most beautiful things in the world cannot be seen or even touched—they [are] felt with the heart” (Keller & Silverman, 2011, p. 11).
Also of value are volunteer readers who manage book carts containing spiritual readings in Braille, picture books, Keller's inspirational writings, and the ASLV Bible or New Testament. These volunteers may be trained in communication skills to visit and interact with Deaf patients.
Likewise, the influence and effect of a patient teacher cannot be underestimated. Keller's teacher, Anne Sullivan, is credited with opening the world of words to Helen's soul, and the two thereafter enjoyed a lifelong friendship. Without the dedication, perseverance, and ingenuity of her teacher, though, Helen Keller's story may have had quite a different ending. Similarly, nurses should use their creative talents as educators to enhance available resources for communication for the Deaf community.
Like all humans, patients who are Deaf have spiritual or religious needs, preferences, and resources that can impact their illness experience. Nurses must care holistically for all patients, regardless of infirmities and disabilities. Thus, nursing care for patients who are Deaf should encompass strategies for supporting their spiritual well-being. Learning to communicate with the Deaf community is an art and needs to be integrated into the nursing care plan.
Although a nurse can provide excellent care, a skillful nurse is arguably one who cares for persons who are Deaf without allowing that disability to distort how the patient is perceived. That is, the nurse ideally cares for a human who is Deaf, rather than a Deaf patient. The example of Helen Keller provides a role model to persons who are Deaf and to nurses who seek patients' best. Keller did not allow blindness and deafness to conquer her, but instead influenced society with her actions and mind. Nurses likewise are in a privileged and pivotal position to provide holistic healthcare to the Deaf community and to influence the healthcare system to supply culturally appropriate spiritual care to these individuals.
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