Abstract
Objective:
Deaf and hard-of-hearing (DHH) people report ineffective healthcare communication. Limited research has been conducted on healthcare communication during pregnancy. This study’s aim was to assess communication accommodations and experiences during pregnancy for DHH people.
Methods:
An accessible web-based survey was administered to a non-probability sample of DHH people through national organizations, social media, and snowball sampling. Eligibility criteria included being 21 years or older; given birth in the U.S. within the past 10 years, report hearing loss prior to the most recent birth. Questions focused on healthcare experiences and information access during their last pregnancy. The sample included 583 respondents for the present analysis. We describe the communication accommodations requested and received during pregnancy, segmented by preferred language.
Results:
Most DHH participants reported communication with prenatal clinicians as “good” or “very good”. On-site interpreter services were most commonly requested by American Sign Language (ASL) only and bilingual DHH people. Interpersonal communication modification requests (e.g., speaking louder) were rarely obliged.
Conclusion:
This study is the first national examination of requested and received communication accommodations for DHH patients during the perinatal period.
Practice Implications:
Healthcare providers should work closely with patients to ensure effective communication access is provided.
Keywords: Obstetrics, Deaf and hard-of-hearing, Health communication
1. Introduction
1.1. Introduction
Although people with age-related hearing loss are often the focus of disparities affecting deaf and hard-of-hearing people (DHH), approximately six percent of U.S. adults aged 18–44 years of age reported difficulties hearing.[1] Being deaf or hard-of-hearing (DHH) is associated with adverse social and health outcomes, including worse pregnancy and birth-related outcomes.[2–6] These outcomes are strongly affected by the communication environment in society and in healthcare. Studies have shown that being DHH affects healthcare communication, resulting in changes in healthcare delivery and clinician frustrations [7–10]. Barriers in language, communication, and even culture, along with a general mistrust of the medical community, results in social and healthcare marginalization for many DHH individuals.[9,11–14] This is exacerbated by limited health literacy, as DHH individuals were found to be nearly seven times more likely to have inadequate health literacy compared to their hearing peers.[15] These systems-influenced barriers impact DHH patients’ healthcare utilization and health promoting behavior,[7,16] and lead to DHH people receiving less information from their clinicians.[9,17,18]
1.2. Healthcare Communication for DHH People
Federal regulations – including Section 504 of the Rehabilitation Act of 1973, the Americans with Disabilities Act of 1990 and subsequent revisions, and Section 1557 of the Patient Protection and Affordable Care Act – require that healthcare organizations provide effective communication access to DHH patients. These regulations require that healthcare organizations defer to patients’ request for preferred communication modality or accommodation. This deference, called primary consideration, is based on the idea that DHH people are the most knowledgeable about their disability and, are therefore, in the most suitable position to determine the best way to receive communication access.[19]
Accommodations that are requested vary based on the DHH patient’s communication modality and preferences. For example, DHH English-speakers may use assistive hearing technology, such as hearing aids or pocket talkers, or request healthcare providers to use surgical masks with a clear window to facilitate lipreading or captioning at the bedside.[18] DHH American Sign Language (ASL) users predominantly prefer professional on-site/in-person ASL interpreters or ASL fluent providers.[9,20] However, on-site interpreters are not always provided. A 2018 survey of DHH ASL-users in Florida found that 37% of respondents had their interpreter requests denied in a medical facility.[21] In addition, a national study indicated that a significant number of publicly funded mental health and substance use treatment facilities were in non-compliance with federal accessibility regulations.[22] Commonly, medical facilities do not provide on-site interpreters and instead provide web-based interpreting services such as Video Remote Interpreting (VRI).[9,23–25] VRI connects the patient and provider to an offsite interpreter through a laptop or tablet. Providers and hospitals often prefer VRI for interpreting services due to lower cost and faster accessibility as compared to in-person interpreters. The U.S. Department of Justice has outlined specific technical requirements to use VRI including internet bandwidth, and camera and audio quality.[26] Despite these requirements, many DHH ASL-users who interact with VRI in healthcare find the technology lacks adequate consistency and the modality interferes with a willingness to disclose medical information.[23] Given these issues, advocacy organizations recommend using VRI only as a last resort.[27]
1.3. Purpose
National public health priorities in the United States aim to improve pregnancy-related, fetal, and neonatal health outcomes among people who give birth.[28] Despite the epidemiological evidence indicating poorer obstetric outcomes among DHH people, there have been few studies considering communication access when receiving perinatal care. Understanding DHH patients’ communication access during perinatal care will aid in identifying opportunities to improve care – and, therefore, obstetric and neonate outcomes – among this priority population. Therefore, the aim of this descriptive study was to report the prevalence of communication accommodations used by DHH patients, segmented by patients’ language preference.
2. Methods
2.1. Study Design
Data for this study were collected through the Survey on Pregnancy Experiences of Deaf and Hard-of-Hearing Women, administered in the United States in English, ASL, and Spanish in May 2020 through July 2021. The survey was designed and benchmarked from previous studies of pregnancy experiences among women with physical disabilities,[29] and included items from the Pregnancy Risk Assessment Monitoring Survey (PRAMS).[30] The survey was designed in collaboration with organizational partners and community advisory board members, including DHH community members and obstetric clinicians. The survey was subsequently translated into ASL by a translation and adaptation workgroup,[21,31,32] and into Spanish by a professional translator. The written English and Spanish, and ASL versions of the survey were programmed into an online platform by two independent consultants with experience administering surveys to the DHH community using similar methods.
The study presented in this article represents the quantitative aim of a convergent mixed methods study. In a convergent mixed methods study, quantitative and qualitative data are collected on complementary constructs and merged to gain a better understanding.[33,34] (This is similar to the concept of triangulation across stakeholders, a best practice in disability research.[35]) In this case, these quantitative results represent the prevalence of communication accommodations requested by DHH people during their pregnancy care. We also conducted in-depth interviews with: DHH women; obstetric providers; ASL interpreters; and doulas. Some findings from the interviews with DHH women are published elsewhere.[36] Results from interviews with other stakeholders will be reported in future articles.
2.2. Recruitment and Procedures
We partnered with local and national organizations serving DHH people to recruit participants through purposeful recruitment methods. This included recruitment through social media, distribution through community-based organizations and publications (e.g., CNY Latino Newspaper and Reflejos Español), national disability organizations (e.g., Hearing Loss Association of America newsletter), Nurse-Family Partnerships, and independent living centers throughout the U.S. The research team repeatedly reassessed the recruited sample to strategically increase racial and ethnic minority representation within the sample. Eligibility criteria to participate in the study was: (1) at least 21 years of age, (2) given birth to at least one child within the 10 years preceding the survey, (3) gave birth to most recent child in the United States, (4) and have a hearing loss occurring prior to the birth of the most recent child.
After receiving information about the survey, participants completed an eligibility screening questionnaire. Eligible participants were required to consent to participation electronically. Participants completed the web-based survey or had the option to request the research team to administer the survey to them (e.g., Zoom videocall); no one requested research team administration of the survey. In the survey, participants could observe a signing model explaining questions in ASL with subtitles or read the questions in written English or Spanish. After completing the survey, participants could opt into a random drawing for one of the five $50 gift cards available. All procedures were reviewed and approved by the researchers’ institutional review board.
2.3. Measures
2.3.1. Communication quality.
Quality of communication with the primary pregnancy healthcare provider was measured through the following item: During your last pregnancy, how would you rate your communication with your health care provider (who was taking care of you while you were pregnant with your last child)? Quality was measured through a five-point Likert-type response scale ranging from “very good” to “very poor”.
2.3.2. Communication accommodations.
Communication accommodations were asked through two separate items for prenatal care and labor and delivery (L&D) periods, with one question for what was requested and one question for what was received. All questions were asked with respect to the most recent birth. For requests, response options were: (1) through a professional sign language interpreter, (2) VRI, (3) sign language-fluent health care provider, (4) live captioning app, (5) communication face-to-face, (6) none, or (7) free-text response option. For receipt of accommodations, options were (1) pen and paper, (2) through a professional sign language interpreter, (3) VRI, (4) lip-reading only, (5) family member or friend helped with communication, (6) sign language-fluent provider or staff, (7) hearing assistive/listening device, (8) captioning service, (9) interpersonal modification (e.g., speak more slowly), (10) none, or (11) a free-text response option. Participants could select all that apply. Free-text responses were coded into pre-existing categories when applicable and separated into new accommodations when needed.
2.3.3. VRI-related items.
For participants who indicated that VRI was used during perinatal care (i.e., anytime pre-, during, or after labor and delivery), two additional items related to VRI quality were asked. First, participants indicated if VRI was used (1) before labor or birth, (2) during labor or birth, or (3) postpartum. Then, participants indicated if they experienced any issues with VRI, including (1) connectivity, (2) placement or being unable to see the VRI, (3) healthcare providers taking too long setting up the VRI, or (4) a free-text response option. Open-ended, free-text responses regarding barriers related to the use of VRI were reviewed and consensus coded by two authors familiar with the technology. Responses were coded into pre-existing categories or separated into a new category (‘Other’) when needed.
2.3.4. Preferred language.
The preferred language of DHH participants was derived from the question, “What language(s) do you prefer to use?” with the answer choices of (1) Sign Language or ASL, (2) English, (3) Spanish, and (4) Other, with a free-text response option. Participants could indicate multiple preferred languages. We recoded these responses into mutually exclusive categories for (1) ASL only, (2) bilingual ASL and English, and (3) English. No respondents indicated that they only used Spanish, another spoken language, or another signed language. Those participants were coded into the predominant language groups they preferred. For example, a DHH respondent who indicated a preference for ASL, English, and Spanish was coded as bilingual in ASL and English; a DHH person preferring ASL and Spanish, ASL only.
2.3.5. Demographic characteristics.
Demographic characteristics measured on the survey included age, race, ethnicity, and current relationship status. In addition, we asked about educational status and marital status at time of most recent birth.
2.4. Data Analysis
Data were analyzed in SAS v. 9.4. (SAS Institute, Cary, NC, USA). Data were summarized into descriptive statistics using frequencies and percentages to describe the prevalence of communication accommodation requests and receipt in pregnancy care for DHH people, segmented by preferred language.
3. Results
3.1. Sample Characteristics
In total, the sample consisted of 583 respondents. More respondents were bilingual ASL/English speakers (40.8%), followed by ASL-users (40.1%), and English-speakers (19.0%; see Table 1). The sample was predominantly white, in their mid-30s, college-educated, and unmarried at their most recent birth. Over 70% of each patient group reported their communication quality with clinicians during prenatal care was “good” or “very good.”
Table 1.
Demographic characteristics of the sample, by preferred language of deaf and hard-of-hearing people.
| Characteristic | ASL-users (n = 234) |
Bilingual ASL/English (n = 238) |
English-speakers (n = 111) |
|---|---|---|---|
| Age, in years (SD) and range |
M = 34.3 (5.5) 22 – 49 |
M = 35.6 (5.5) 23 – 49 |
M = 36.2 (5.5) 24 – 49 |
| Racea | |||
| White | 86.4% (133) |
91.1% (154) |
89.8% (79) |
| Black or African American | 5.8% (9) |
3.0% (5) |
3.4% (3) |
| Asian | 3.9% (6) |
3.6% (6) |
3.4% (3) |
| Native Hawaiian or Other Pacific Islander | 1.3% (2) |
0.0% (0) |
1.1% (1) |
| American Indian or Alaskan Native | 0.6% (1) |
0.0% (0) |
0.0% (0) |
| Biracial or multiracial | 1.9% (3) |
2.4% (4) |
2.3% (2) |
| Hispanic ethnicitya | 14.0% (23) |
11.6% (21) |
14.3% (13) |
| Education status, at most recent child’s birtha | |||
| Some college or lower | 47.0% (77) |
36.3% (66) |
36.3% (33) |
| 4-year college graduate | 53.0% (87) |
63.7% (116) |
63.7% (58) |
| Marital status, at most recent child’s birtha | |||
| Not married | 69.3% (113) |
74.6% (135) |
81.3% (74) |
| Married | 30.7% (50) |
25.4% (46) |
18.7% (17) |
| Have spouse/partnera | |||
| No | 5.4% (11) |
4.1% (9) |
7.5% (8) |
| Yes | 94.6% (194) |
95.9% (213) |
92.5 (99) |
| Communication quality during prenatal carea | |||
| Very good | 36.0% (73) |
44.5% (97) |
42.3% (44) |
| Good | 35.0% (71) |
31.2% (68) |
32.7% (34) |
| Average | 25.1% (51) |
20.6% (45) |
22.1% (23) |
| Poor | 2.5% (5) |
2.3% (5) |
1.9% (2) |
| Very poor | 1.5% (3) |
1.4% (3) |
1.0% (1) |
Some cases missing.
ASL: American Sign Language. SD: Standard deviation.
3.2. Communication Accommodations
Communication accommodations requested and provided during prenatal care and labor and delivery are provided by participants’ preferred language in Table 2 and Figure 1. Key results are outlined below.
Table 2.
Communication access during perinatal care by preferred language of deaf and hard-of-hearing people who have given birth in the past 10 years.
| Accommodation | Prenatal Care | Labor and Delivery | ||||
|---|---|---|---|---|---|---|
| ASL-users | Bilingual ASL/English | English-speakers | ASL-users | Bilingual ASL/English | English-speakers | |
| Professional interpreter | ||||||
| Not requested or received | 22.2% (52) |
36.6% (87) |
89.2% (99) |
33.3% (78) |
42.4% (101) |
87.4% (97) |
| Requested, not received | 4.7% (11) |
4.6% (11) |
1.8% (2) |
6.4% (15) |
9.2% (22) |
4.5% (5) |
| Requested and received | 70.9% (166) |
56.7% (135) |
7.2% (8) |
57.7% (135) |
47.1% (112) |
4.5% (5) |
| Not requested, but received | 2.1% (5) |
2.1% (5) |
1.8% (2) |
2.6% (6) |
1.3% (3) |
3.6% (4) |
| Video remote interpreting | ||||||
| Not requested or received | 71.8% (168) |
74.8% (178) |
94.6% (105) |
87.6% (205) |
87.8% (209) |
95.5% (106) |
| Requested, not received | 4.7% (11) |
4.2% (10) |
2.7% (3) |
1.3% (3) |
3.4% (8) |
1.8% (2) |
| Requested and received | 16.2% (38) |
14.7% (35) |
1.8% (2) |
6.0% (14) |
4.6% (11) |
0.9% (1) |
| Not requested, but received | 7.3% (17) |
6.3% (15) |
0.9% (1) |
5.1% (12) |
4.2% (10) |
1.8% (2) |
| ASL fluent provider | ||||||
| Not requested or received | 89.7% (210) |
92.4% (220) |
93.7% (104) |
92.7% (217) |
89.9% (214) |
92.8% (103) |
| Requested, not received | 5.1% (12) |
2.5% (6) |
3.6% (4) |
5.1% (12) |
4.6% (11) |
2.7% (3) |
| Requested and received | 3.0% (7) |
4.6% (11) |
1.8% (2) |
0.9% (2) |
3.8% (9) |
2.7% (3) |
| Not requested, but received | 2.1% (5) |
0.4% (1) |
0.9% (1) |
1.3% (3) |
1.7% (4) |
1.8% (2) |
| Live captioning | ||||||
| Not requested or received | 97.0% (227) |
92.0% (219) |
90.1% (100) |
97.0% (227) |
95.0% (226) |
87.4% (97) |
| Requested, not received | 1.7% (4) |
5.5% (13) |
4.5% (5) |
2.6% (6) |
4.6% (11) |
8.1% (9) |
| Requested and received | 0.4% (1) |
1.7% (4) |
5.4% (6) |
0.4% (1) |
0.0% (0) |
3.6% (4) |
| Not requested, but received | 0.9% (2) |
0.8% (2) |
0.0% (0) |
0.0% (0) |
0.4% (1) |
0.9% (1) |
| Written communication | ||||||
| Not requested or received | 70.9% (166) |
71.4% (170) |
86.5% (96) |
85.5% (200) |
84.5% (201) |
91.0% (101) |
| Requested, not received | 2.6% (6) |
2.1% (5) |
2.7% (3) |
0.0% (0) |
1.3% (3) |
0.0% (0) |
| Requested and received | 26.5% (62) |
26.5% (63) |
10.8% (12) |
1.3% (3) |
0.0% (0) |
0.0% (0) |
| Not requested, but received | 0.0% (0) |
0.0% (0) |
0.0% (0) |
13.2% (31) |
14.3% (34) |
9.0% (10) |
| Family/friend (proxy) helped | ||||||
| Not requested or received | 88.5% (207) |
79.4% (189) |
69.4% (77) |
86.3% (202) |
71.8% (171) |
56.8% (63) |
| Requested, not received | 0.0% (0) |
0.0% (0) |
0.9% (1) |
0.0% (0) |
0.0% (0) |
0.0% (0) |
| Requested and received | 1.3% (3) |
2.1% (5) |
1.8% (2) |
2.6% (6) |
1.7% (4) |
1.8% (2) |
| Not requested, but received | 10.3% (24) |
18.5% (44) |
27.9% (31) |
11.1% (26) |
26.5% (63) |
41.4% (46) |
| Interpersonal communication modification (e.g., face-to-face, speak louder, repeat, slowly, etc.) | ||||||
| Not requested or received | 85.5% (200) |
62.6% (149) |
38.74% (43) |
94.0% (220) |
74.0% (176) |
44.1% (49) |
| Requested, not received | 9.4% (22) |
20.6% (49) |
26.1% (29) |
3.8% (9) |
12.2% (29) |
20.7% (23) |
| Requested and received | 4.3% (10) |
13.0% (31) |
27.0% (30) |
0.9% (2) |
7.1% (17) |
27.0% (30) |
| Not requested, but received | 0.9% (2) |
3.8% (9) |
8.1% (9) |
1.3% (3) |
6.7% (16) |
8.1% (9) |
| Assistive listening devicea | ||||||
| Unknown / Not reported | 98.3% (230) |
95.0% (226) |
84.7% (94) |
97.4% (228) |
96.6% (230) |
92.8% (103) |
| Received (unknown request status) | 1.7% (4) |
5.0% (12) |
15.3% (17) |
2.6% (6) |
3.4% (8) |
7.2% (8) |
| Cued speech transliteratora | ||||||
| Unknown / not reported | NR | NR | NR | 100.0% (234) |
100.0% (238) |
99.1% (110) |
| Requested, not received | NR | NR | NR | 0.0% (0) |
0.0% (0) |
0.9% (1) |
| Doulaa | ||||||
| Unknown / not reported | NR | NR | NR | 99.6% (233) |
100.0% (238) |
99.1% (110) |
| Requested, not received | NR | NR | NR | 0.4% (1) |
0.0% (0) |
0.0% (0) |
| Received, unknown request status | NR | NR | NR | 0.0% (0) |
0.0% (0 |
0.9% (1) |
| White boarda | ||||||
| Unknown / not reported | NR | NR | NR | 94.0% (220) |
92.0% (219) |
90.1% (100) |
| Received, unknown request status | NR | NR | NR | 6.0% (14) |
8.0% (19) |
9.9% (11) |
Write in option from free-text response.
ASL: American Sign Language. NR: Not reported.
Figure 1.
Proportion of respondents requesting an accommodation during the perinatal care process, by language and accommodation.
3.2.1. Prenatal Care
On-site interpreters were the most frequently requested accommodation by ASL only (75.6%) and bilingual participants (61.3%). For VRI, 20.9% of ASL only and 18.9% bilingual participants requested this accommodation. Among those who requested on-site interpreters, approximately 5% of both ASL only and bilingual participants did not have their requests met. Similarly, 6–7% of these participants reported receiving VRI, despite it not being requested. Interpersonal communication modifications, such as face-to-face communication or speaking louder, was primarily requested by bilingual (33.6%) and English-speaking (53.1%) participants. Of those requesting these modifications, however, 61% of bilingual and 49% of English-speaking participants reported not receiving the accommodation from their clinician. Over 15% of English-speaking participants reported the use of an assistive listening device when communicating with their clinician.
Nearly 29% percent of both ASL only and bilingual and 13.5% of English-speaking participants indicated they also requested written communication as an accommodation with their clinician. Most of these individuals were able to receive this accommodation. Access to an ASL fluent clinician and live captioning were less frequently requested and received by ASL only, bilingual and English-speaking participants. Notably, despite not being requested, the use of proxy interpreters or communication facilitators (e.g., family member or friend helping) still occurred among 10.3% of ASL only, 18.5% of bilinguals and 27.9% of English-speaking participants.
3.2.2. Labor and Delivery
On-site interpreters were requested at a higher prevalence than VRI for ASL-users (64.1% vs. 7.3%, respectively) and bilingual participants (56.3% vs. 8%). Among those who requested on-site interpreters during delivery, 10.0% of ASL only and 16.4% of bilingual participants failed to receive this accommodation during the birth of their child. Written communication, while not requested, was provided during labor and delivery more frequently to ASL only (13.2%) and bilingual (14.3%) participants than English-speakers (9.0%). The use of white board also separately was confirmed by 6.0% of ASL only, 8.0% of bilingual, and 9.9% of English-speaking. Similarly, while not requested, the use of proxy interpreters or communication facilitation from family members or friends still occurred among 11.1% of ASL only, 26.5% of bilinguals and 41.4% of English-speaking participants during their delivery.
Interpersonal communication modifications were requested by 47.7% of English-speaking and 19.3% bilingual participants. However, among those requesting interpersonal accommodations, 63% of bilingual participants and 43% of English-speaking participants did not receive any interpersonal accommodation from their clinician during their labor and delivery. Similar to prenatal care, access to an ASL fluent clinician, live captioning, assistive listening device use, cued speech transliterator and doula were infrequently requested and provided to participants.
3.3. Experiences with VRI
Less than one-fourth of participants (17.5%) reported using VRI during perinatal care (see Table 3). Of participants who experienced using VRI for perinatal care, the majority of individuals used VRI before labor or birth (77.5%); however, 22.5% indicated using VRI during labor or delivery. Connectivity issues were the most frequently reported issues with VRI, followed by the delay in setting up VRI and poor placement.
Table 3.
Use of Video Remote Interpreting during pregnancy care, by preferred language of deaf and hard-of-hearing people.
| Experiences with VRI | Prevalence among Users (n = 102) |
|---|---|
| VRI was used during pregnancy (not mutually exclusive categories) | |
| Before labor and delivery | 77.45% (79) |
| During labor or delivery | 22.55% (23) |
| Post labor or delivery | 44.12% (45) |
| Issues with VRI (among users) | |
| No reported issues | 13.7% (14) |
| Connectivity | 75.5% (77) |
| Placement/can’t see | 49.0% (50) |
| Too long to set up | 52.0% (53) |
| Other open-ended responses (e.g., lack of staff skill using VRI; awkward or uncomfortable; audio issues; interpreter qualification; and, lack of patient-centered care) | 10.8% (11) |
4. Discussion and Conclusion
4.1. Discussion
This study offers the first national examination of the prevalence of requested and received communication accommodations for DHH patients during prenatal care and labor and delivery periods. Overall, the majority of DHH participants (over 70% for ASL only, bilingual and English speaking) reported their communication quality with their prenatal clinicians during their as “good” or “very good.” On-site interpreter services were the most commonly requested accommodation among ASL only and bilingual DHH people. Most of these requests were provided according to these participants. For English-speaking participants, the most frequent requested accommodation requested involved interpersonal communication modifications, yet this appeared to be inconsistently provided.
There are several key findings from these results. First, the majority of on-site and VRI interpreter requests were provided to DHH ASL-only and bilingual participants. In line with federal regulations (see Healthcare Communication for DHH People), healthcare organizations appear to be meeting these participants’ request for preferred communication modality or accommodation. Providing participants’ requests for interpreters contrasts with previous literature demonstrating healthcare systems’ failures or infrequency to provide interpreters for DHH ASL-users.[9,18,22,37,38] For less straightforward accommodation requests (e.g., interpersonal communication modification), participants struggled to receive them. This is despite a lack of significant financial costs to implement these accommodations (e.g., speaking louder, repeating or speaking more slowly). Healthcare staff and clinicians rarely obtain training on how to effectively communicate with DHH individuals.[18,39,40] As a result, their lack of training or awareness may reduce the communication quality and satisfaction that DHH individuals receive.[41] The national survey was also disseminated during the COVID-19 pandemic and this may also include communication challenges generated by the widespread use of surgical masks.[42,43]
Second, a surprising finding was the proportion of ASL only and bilingual who did not request an on-site interpreter: 22% of ASL only and 36.6% of bilingual participants reported not requesting interpreters for prenatal care. Similarly, one in three ASL only and over 40% of bilingual participants did not request interpreters during labor and delivery. The perinatal period is an incredibly intimate and private situation for many people and the addition of an interpreter who they do not know well could create further discomfort. This is less likely true in prenatal settings, so there may be additional factors playing a role here. Prior literature has demonstrated lifelong struggles to obtain interpreters or accommodations.[9,44] This may condition certain DHH individuals to no longer request or self-advocate for these accommodations. Additionally, there may be fear that if they make these accommodation or interpreter requests, they will not be able to receive care from their clinicians.[45,46]
Third, the use of proxy interpreters or communication facilitators in both prenatal and labor & delivery settings was higher than anticipated. The use of family members and/or friends in these settings are inappropriate and unethical, compromising the patient’s autonomy and privacy.[9,47] Rather than being available to support the DHH patient, family members or friends are forced to serve an interpreter role, one that requires impartiality and training to do successfully. The use of proxy interpreters reported in the survey may reflect participants’ inability to secure accommodations from their healthcare systems or clinicians or be used as a mitigating strategy to avoid being denied care if they request accommodations.
Fourth, while VRI was used during perinatal care for 102 DHH participants, there were widespread issues reported, including connectivity issues (75.5%), poor visibility or placement of the video screen (49.0%), and delays in setting up the service (52.0%). This replicates prior findings and confirms the technical and logistical barriers to the use of VRI in healthcare settings VRI problems.[9,20,23] To successfully implement this technology among DHH patients who request this service, further efforts are needed to improve the online connectivity and speed required for clear video. Healthcare staff are the primary ones who set up VRI for clinicians-patients. Staff members need to be trained on best practices with VRI use. This may include appropriateness (e.g., delivery room where a patient may be ungowned), placement issues (e.g., patient supine), and interpreter qualifications and match (e.g., gender or regional signs).[9]
Fifth, there is a heterogeneity of communication preferences and accommodations that have to be considered by the healthcare team. This requires asking DHH patients on what accommodations or communication needs they may have. Few healthcare systems proactively screen for hearing loss. This places clinicians and patients at high risk for communication breakdowns, reduced adherence, and lower patient satisfaction.[18] Breakdowns in language and healthcare communication are linked with higher rates of ED use, inpatient hospital utilization, and utilization also affect fund of health knowledge and health literacy.[7,15,48–51] Considering the barriers typically present when DHH patients request accommodations, the finding that ~71–76% of DHH patients indicated that prenatal care communication was good or very good, overall, is surprising. This may be due to lower expectations of healthcare providers providing any communication accommodations, conditioned over the life course of DHH people.[51]
4.2. Strengths and Limitations
To our knowledge, this is the first study of prevalence of requested and received communication accommodations for DHH patients during prenatal care and labor and delivery periods. The use of an accessible, multilingual online survey gathering responses from a large DHH national sample is a significant strength. There are, however, several limitations present. First, participants were asked to respond to requested and received accommodations in both prenatal and labor and delivery settings. Participants may have varied in their responses, including listing all that was used throughout the prenatal and perinatal periods. Participants may also have responded only at their last clinician interaction. The structure of the survey did not allow for us to understand the pathway of accommodations (e.g., request and denial of on-site interpreters resulting in the use of VRI). Furthermore, the survey did not assess communication quality and whether accommodations were requested and received when interacting with non-clinician healthcare staff. Lastly, the survey was administered during the COVID-19 pandemic which was associated with significant challenges regarding DHH patient communication in healthcare settings (e.g., use of inaccessible surgical masks, lack of interpreter services, use of VRI).
4.3. Practical Implications
A summary of recommendations for clinical practice when working with DHH people during pregnancy is provided in Table 4. These recommendations were developed based on best practices and legal guidelines, in addition to the experiences of the interdisciplinary author team including family medicine physicians, ASL interpreters, and health services and health policy researchers.
Table 4.
Recommendations for clinical practice to improve healthcare communication with deaf and hard-of-hearing people during pregnancy.
| Recommendation | Action Items |
|---|---|
| Assess patient accommodation needs on a case-by-case basis. |
|
| Develop a communication plan with patients and document this plan in the medical record. |
|
4.4. Conclusions
These are important considerations as we, as a nation, work towards improving the proportion of women who receive timely and adequate prenatal care, including those who are DHH.[28] The study findings demonstrate that DHH women request a variety of communication accommodations. Due to previously established higher health care use and documented risk for adverse pregnancy and birth outcomes, clinicians should closely monitor DHH women to identify addressable risk factors, including communication breakdowns, in an effort to help reduce their disparities. This underscores the need for a healthcare system that proactively screens for the presence of a hearing loss and matches the individual’s needs with an appropriate accommodation to ensure effective and accessible health care communication.
References
- [1].Centers for Disease Control and Prevention, QuickStats: Percentage of adults aged ≥18 years who have difficulty hearing even when using a hearing aid, by age group - National Health Interview Survey, United States, 2020, MMWR Morb Mortal Wkly Rep. 71 (2022). 10.15585/mmwr.mm7112a5. [DOI] [PMC free article] [PubMed] [Google Scholar]
- [2].Mitra M, Akobirshoev I, McKee MM, Iezzoni LI, Birth outcomes among U.S women with hearing loss, Am J Prev Med. 51 (2016) 865–873. 10.1016/j.amepre.2016.08.001. [DOI] [PMC free article] [PubMed] [Google Scholar]
- [3].Mitra M, McKee MM, Akobirshoev I, Valentine A, Ritter G, Zhang J, McKee K, Iezzoni LI, Pregnancy, birth, and infant outcomes among women who are deaf or hard of hearing, Am J Prev Med. 58 (2020) 418–426. 10.1016/j.amepre.2019.10.012. [DOI] [PMC free article] [PubMed] [Google Scholar]
- [4].Mitra M, McKee MM, Akobirshoev I, Ritter GA, Valentine AM, Pregnancy and neonatal outcomes among deaf and hard of hearing women: Results from nationally representative data, Womens Health Issues. 31 (2021) 470–477. 10.1016/j.whi.2021.03.005. [DOI] [PMC free article] [PubMed] [Google Scholar]
- [5].McKee KS, Akobirshoev I, McKee M, Li FS, Mitra M, Postpartum hospital readmissions among Massachusetts women who are deaf or hard of hearing, J Womens Health (Larchmt). (2022). 10.1089/jwh.2022.0068. [DOI] [PMC free article] [PubMed] [Google Scholar]
- [6].James TG, McKee MM, Miller MD, Sullivan MK, Coady KA, Varnes JR, Pearson TA, Yurasek AM, Cheong J, Emergency department utilization among deaf and hard-of-hearing patients: A retrospective chart review, Disability and Health Journal. (2022). https://doi.org/10/gqfgmb. [DOI] [PMC free article] [PubMed] [Google Scholar]
- [7].McKee MM, Moreland C, Atcherson SR, Zazove P, Hearing loss: Communicating with the patient who is deaf or hard of hearing, FP Essent. 434 (2015) 24–28. [PubMed] [Google Scholar]
- [8].McEwen E, Anton-Culver H, The medical communication of deaf patients, The Journal of Family Practice. 26 (1988) 289–291. [PubMed] [Google Scholar]
- [9].James TG, Coady KA, Stacciarini J-MR, McKee MM, Phillips DG, Maruca D, Cheong J, “They’re not willing to accommodate Deaf patients”: Communication experiences of Deaf American Sign Language users in the emergency department, Qual Health Res. 32 (2022) 48–63. https://doi.org/10/gnm48j. [DOI] [PubMed] [Google Scholar]
- [10].Bainbridge KE, Wallhagen MI, Hearing loss in an aging American population: extent, impact, and management, Annu Rev Public Health. 35 (2014) 139–152. 10.1146/annurev-publhealth-032013-182510. [DOI] [PubMed] [Google Scholar]
- [11].Barnett S, Klein JD, Pollard RQ Jr., Samar V, Schlehofer D, Starr M, Sutter E, Yang H, Pearson TA, Community participatory research with Deaf sign language users to identify health inequities, American Journal of Public Health. 101 (2011) 2235–2238. 10.2105/AJPH.2011.300247. [DOI] [PMC free article] [PubMed] [Google Scholar]
- [12].McKee MM, Schlehofer D, Thew D, Ethical issues in conducting research with Deaf populations, Am J Public Health. 103 (2013) 2174–2178. 10.2105/AJPH.2013.301343. [DOI] [PMC free article] [PubMed] [Google Scholar]
- [13].Hauser PC, O’Hearn A, McKee M, Steider A, Thew D, Deaf epistemology: Deafhood and deafness, American Annals of the Deaf. 154 (2010) 486–492. 10.1353/aad.0.0120. [DOI] [PubMed] [Google Scholar]
- [14].Meador HE, Zazove P, Health care interactions with deaf culture, J Am Board Fam Pract. 18 (2005) 218–222. 10.3122/jabfm.18.3.218. [DOI] [PubMed] [Google Scholar]
- [15].McKee MM, Paasche-Orlow MK, Winters PC, Fiscella K, Zazove P, Sen A, Pearson T, Assessing health literacy in Deaf American Sign Language users, J Health Commun. 20 Suppl 2 (2015) 92–100. 10.1080/10810730.2015.1066468. [DOI] [PMC free article] [PubMed] [Google Scholar]
- [16].McKee MM, Barnett S, Block RC, Pearson TA, Impact of communication on preventive services among deaf American Sign Language users, American Journal of Preventive Medicine. 41 (2011) 75–79. 10.1016/j.amepre.2011.03.004. [DOI] [PMC free article] [PubMed] [Google Scholar]
- [17].O’Hearn A, Deaf women’s experiences and satisfaction with prenatal care: a comparative study, Fam Med. 38 (2006) 712–716. [PubMed] [Google Scholar]
- [18].McKee M, James TG, Helm KVT, Marzolf B, Chung DH, Williams J, Zazove P, Reframing our health care system for patients with hearing loss, J Speech Lang Hear Res. (2022) 1–13. 10.1044/2022_JSLHR-22-00052. [DOI] [PMC free article] [PubMed] [Google Scholar]
- [19].Argenyi v. Creighton University, 2013.
- [20].Yabe M, Healthcare providers’ and deaf patients’ interpreting preferences for critical care and non-critical care: Video remote interpreting, Disability and Health Journal. (2019) 100870. 10.1016/j.dhjo.2019.100870. [DOI] [PubMed] [Google Scholar]
- [21].James TG, McKee MM, Sullivan MK, Ashton G, Hardy SJ, Santiago Y, Phillips DG, Cheong J, Community-engaged needs assessment of Deaf American Sign Language users in Florida, 2018, Public Health Rep. (2021) 333549211026782. 10.1177/00333549211026782. [DOI] [PMC free article] [PubMed] [Google Scholar]
- [22].James TG, Argenyi MS, Guardino DL, McKee MM, Wilson JA, Sullivan MK, Griest Schwartzman E, Anderson ML, Communication access in mental health and substance use treatment facilities for deaf American Sign Language users, Health Affairs. 41 (2022) 1413–1422. 10.1377/hlthaff.2022.00408. [DOI] [PubMed] [Google Scholar]
- [23].Kushalnagar P, Paludneviciene R, Kushalnagar R, Video Remote Interpreting technology in healthcare: Cross-sectional study of Deaf patients’ experiences, JMIR Rehabil Assist Technol. 6 (2019) e13233. 10.2196/13233. [DOI] [PMC free article] [PubMed] [Google Scholar]
- [24].Liese v. Indian River County Hospital District, 2012.
- [25].Sunderland v. Bethesda Health, Inc, 2016.
- [26].U.S. Department of Justice, Effective communication, Disability Rights Section, Civil Rights Division, U.S. Department of Justice, Washington D.C., 2014. https://www.ada.gov/effective-comm.htm. [Google Scholar]
- [27].National Association of the Deaf, Deaf Seniors of America, NAD-Deaf Seniors of America (DSA) Position Statement on Minimum Standards for Video Remote Interpreting Services in Medical Settings, Washington, DC, 2018. https://www.nad.org/about-us/position-statements/minimum-standards-for-video-remote-interpreting-services-in-medical-settings/. [Google Scholar]
- [28].U.S. Department of Health and Human Services, Healthy People 2030 Objectives, HealthyPeople.Gov. (2020). https://health.gov/healthypeople/objectives-and-data/browse-objectives (accessed September 8, 2020). [Google Scholar]
- [29].Mitra M, Akobirshoev I, Moring NS, Long-Bellil L, Smeltzer SC, Smith LD, Iezzoni LI, Access to and satisfaction with prenatal care among pregnant women with physical disabilities: Findings from a national survey, J Womens Health (Larchmt). 26 (2017) 1356–1363. 10.1089/jwh.2016.6297. [DOI] [PMC free article] [PubMed] [Google Scholar]
- [30].Centers for Disease Control and Prevention, Pregnancy Risk Assessment Monitoring System | CDC, (2022). https://www.cdc.gov/prams/index.htm (accessed November 9, 2022).
- [31].Graybill P, Aggas J, Dean RK, Demers S, Finigan EG, Pollard RQ Jr., A community-participatory approach to adapting survey items for Deaf individuals and American Sign Language, Field Methods. (2010). 10.1177/1525822X10379201. [DOI] [Google Scholar]
- [32].McKee MM, Thew D, Starr M, Kushalnagar P, Reid JT, Graybill P, Velasquez J, Pearson T, Engaging the deaf American Sign Language community: Lessons from a community-based participatory research center, Progress in Community Health Partnerships: Research, Education, and Action. 6 (2012) 321. 10.1353/cpr.2012.0037. [DOI] [PMC free article] [PubMed] [Google Scholar]
- [33].Creswell JW, Plano Clark VL, Designing and conducting mixed methods research, Sage Publications, 2017. [Google Scholar]
- [34].Fetters MD, Curry LA, Creswell JW, Achieving integration in mixed methods designs: Principles and practices, Health Services Research. 48 (2013) 2134–2156. 10.1111/1475-6773.12117. [DOI] [PMC free article] [PubMed] [Google Scholar]
- [35].Kroll T, Neri MT, Miller K, Using mixed methods in disability and rehabilitation research, Rehabil Nurs. 30 (2005) 106–113; discussion 113. 10.1002/j.2048-7940.2005.tb00372.x. [DOI] [PubMed] [Google Scholar]
- [36].Panko TL, Cuculick J, Albert S, Smith LD, Cooley MM, Herschel M, Mitra M, McKee M, Experiences of pregnancy and perinatal healthcare access of women who are deaf: a qualitative study, BJOG. (2022). 10.1111/1471-0528.17300. [DOI] [PMC free article] [PubMed] [Google Scholar]
- [37].Panzer K, Park J, Pertz L, McKee MM, Teaming together to care for our Deaf patients: Insights from the Deaf Health Clinic, JADARA. 53 (2020) 60–77. [Google Scholar]
- [38].Alexander A, Ladd P, Powell S, Deafness might damage your health, The Lancet. 379 (2012) 979–981. 10.1016/S0140-6736(11)61670-X. [DOI] [PubMed] [Google Scholar]
- [39].Lewis A, Keele B, Development and validation of an instrument to measure nurses’ beliefs towards deaf and hard-of-hearing interaction, Journal of Nursing Measurement. (2020). 10.1891/JNM-D-19-00024. [DOI] [PubMed] [Google Scholar]
- [40].Pendergrass KM, Nemeth L, Newman SD, Jenkins CM, Jones EG, Nurse practitioner perceptions of barriers and facilitators in providing health care for deaf American Sign Language users: A qualitative socio‐ecological approach, Journal of the American Association of Nurse Practitioners. 29 (2017) 316–323. 10.1002/2327-6924.12461. [DOI] [PubMed] [Google Scholar]
- [41].Reed NS, Betz JF, Kucharska-Newton AM, Lin FR, Deal JA, Hearing loss and satisfaction with healthcare: An unexplored relationship, J Am Geriatr Soc. 67 (2019) 624–626. 10.1111/jgs.15689. [DOI] [PMC free article] [PubMed] [Google Scholar]
- [42].McKee MM, Moran C, Zazove P, Overcoming additional barriers to care for deaf and hard-of-hearing patients during COVID-19, JAMA Otolaryngology–Head & Neck Surgery. 146 (2020) 781–782. https://doi.org/10/gg5tmq. [DOI] [PubMed] [Google Scholar]
- [43].Homans NC, Vroegop JL, The impact of face masks on the communication of adults with hearing loss during COVID-19 in a clinical setting, Int J Audiol. 61 (2022) 365–370. 10.1080/14992027.2021.1952490. [DOI] [PubMed] [Google Scholar]
- [44].Schwartz M, Communication in the doctor’s office: Deaf patients talk about their physicians, Dissertation, Syracuse University, 2006. https://surface.syr.edu/cfe_etd/7. [Google Scholar]
- [45].Schniedewind E, Lindsay RP, Snow S, Comparison of access to primary care medical and dental appointments between simulated patients who were deaf and patients who could hear, JAMA Netw Open. 4 (2021) e2032207. 10.1001/jamanetworkopen.2020.32207. [DOI] [PMC free article] [PubMed] [Google Scholar]
- [46].Iezzoni LI, Rao SR, Ressalam J, Bolcic-Jankovic D, Agaronnik ND, Donelan K, Lagu T, Campbell EG, Physicians’ perceptions of people with disability and their health care, Health Aff (Millwood). 40 (2021) 297–306. 10.1377/hlthaff.2020.01452. [DOI] [PMC free article] [PubMed] [Google Scholar]
- [47].Juckett G, Unger K, Appropriate use of medical interpreters, Am Fam Physician. 90 (2014) 476–80. [PubMed] [Google Scholar]
- [48].Reed NS, Altan A, Deal JA, Yeh C, Kravetz AD, Wallhagen M, Lin FR, Trends in health care costs and utilization associated with untreated hearing loss over 10 years, JAMA Otolaryngol Head Neck Surg. 145 (2019) 27–34. 10.1001/jamaoto.2018.2875. [DOI] [PMC free article] [PubMed] [Google Scholar]
- [49].Hsu AK, McKee M, Williams S, Roscigno C, Crandell J, Lewis A, Hazzard W, Jenerette C, Associations among hearing loss, hospitalization, readmission and mortality in older adults: A systematic review, Geriatr Nurs. 40 (2019) 367–379. 10.1016/j.gerinurse.2018.12.013. [DOI] [PubMed] [Google Scholar]
- [50].Chang JE, Weinstein B, Chodosh J, Blustein J, Hospital readmission risk for patients with self-reported hearing loss and communication trouble, J Am Geriatr Soc. 66 (2018) 2227–2228. 10.1111/jgs.15545. [DOI] [PubMed] [Google Scholar]
- [51].James TG, Varnes JR, Sullivan MK, Cheong J, Pearson TA, Yurasek AM, Miller MD, McKee MM, Conceptual model of emergency department utilization among deaf and hard-of-hearing patients: A critical review, International Journal of Environmental Research and Public Health. 18 (2021) 12901. 10.3390/ijerph182412901. [DOI] [PMC free article] [PubMed] [Google Scholar]
- [52].Hall WC, What you don’t know can hurt you: The risk of language deprivation by impairing sign langauge development in deaf children, Maternal and Child Health Journal. 21 (2017) 961–965. 10.1007/s10995-017-2287-y. [DOI] [PMC free article] [PubMed] [Google Scholar]
- [53].Halkides H, James TG, McKee MM, Meade MA, Moran C, Park S, Spotlighting disability in a major electronic health record: Michigan Medicine’s Disability and Accommodations Tab, JMIR Formative Research. (2022). [DOI] [PMC free article] [PubMed] [Google Scholar]