Severe maternal morbidity in deaf or hard of hearing women in the United States.

OBJECTIVE: Prior studies on severe maternal morbidity (SMM) have often excluded women who are deaf or hard of hearing (DHH), even though they are at increased risk of pregnancy complications and adverse birth outcomes. This study compared rates of SMM during delivery and postpartum among DHH and non-DHH women. METHODS: This nationally representative retrospective cohort study used hospital discharge data from the 2004-2020 Health Care and Cost Utilization Project Nationwide Inpatient Sample. The risk of SMM with and without blood transfusion during delivery and postpartum among DHH and non-DHH women were compared using modified Poisson regression analysis. The study was conducted in the United States in 2022-2023. RESULTS: The cohort included 9351 births to DHH women for the study period, and 13,574,382 age-matched and delivery year-matched births to non-DHH women in a 1:3 case-control ratio. The main outcomes were SMM and non-transfusion SMM during delivery and postpartum. Relative risks were sequentially adjusted for sociodemographic characteristics, hospital-level characteristics, and clinical characteristics. In unadjusted analyses, DHH women were at 80% higher risk for SMM (RR = 1.81, 95% CI 1.63-2.02, p < 0.001) during delivery and postpartum compared to non-DHH women. Adjustment for socio-demographic and hospital characteristics attenuated risk for SMM (RR = 1.54, 95% CI 1.38-1.72, p < 0.001). Adjustment for the Elixhauser comorbidity score further attenuated the risk of SMM among DHH women (RR = 1.13, 95% CI 1.01-1.26, p < 0.05). CONCLUSION: The findings of this study demonstrate a critical need for inclusive preconception, prenatal, and postpartum care that address conditions that increase the risk for SMM among DHH people.

Examining the differences of perceptions and experience with online health information accessibility between deaf and hearing individuals: A qualitative study.

OBJECTIVE: Describe and compare the experiences and preferences of Deaf and hearing individuals with different levels of health literacy in accessing, interpreting, and acting upon online health information. METHODS: We conducted semi-structured interviews with 17 Deaf and 10 hearing participants with high and low health literacy from three healthcare sites. We conducted thematic analysis of the transcripts to explore information navigation experiences, information sources and dissemination preferences. RESULTS: We found thematic differences between Deaf and hearing participants with high and low health literacy in terms of information needs, information search experiences, information search perceptions, and preferred information dissemination approaches. Relative to hearing counterparts, Deaf participants were more likely to encounter challenges in accessing and understanding online information. Deaf participants with low health literacy were more likely to rely on visual graphics to support their understanding of the information than those with high health literacy. Deaf participants advocated for tailored approaches to disseminate health information to Deaf communities. CONCLUSION: Our findings suggest that differences in online health information navigation experiences and accessibility may inform disparities in health literacy outcomes between Deaf and hearing individuals. PRACTICE IMPLICATIONS: Online health information should be presented in a manner accessible to Deaf community members.

Self-Reported Accommodation Needs for Patients with Disabilities in Primary Care.

BACKGROUND: People with disabilities experience barriers to engaging with health care due to inaccessible social and physical environments at primary care clinics. Despite legal mandates, identification and provision of necessary accommodations for this population at primary care clinics are poor. The objective of this cross-sectional study was to assess patient-reported disability status and accommodation needs among patients at a primary care clinic. METHODS: An electronic health record-based Disability and Accommodations Questionnaire assessing disability status, types, and accommodation needs was developed by subject matter experts at Michigan Medicine and the University of Michigan Council for Disability Concerns. The questionnaire underwent multiple rounds of reviews and revisions before its use in clinical settings. A paper-based questionnaire was administered to all patients presenting for a wellness-based visit at an academic health system primary care clinic in southeast Michigan. Data were collected between March 2022 and August 2022. RESULTS: Approximately 13% of the 541 patients self-reported a disability, with 54.2% indicating at least one needed accommodation. The most commonly reported disabilities were mental health and hearing-related disabilities, by 4.8% and 4.6% of patients, respectively. The most frequently requested accommodations were communication- or language-based (for example, presence of an American Sign Language interpreter, assistive listening devices), cognitive-based (for example, inclusion of a support person with care decisions), and mobility-based (for example, assistance with transfers). CONCLUSION: The Disability and Accommodations Questionnaire helped identify the presence of a disability, its types, and any requested accommodations requested at a primary care health center.

Emergency department patient-centred care perspectives from deaf and hard-of-hearing patients.

BACKGROUND: Deaf and hard-of-hearing (DHH) patients are a priority population for emergency medicine health services research. DHH patients are at higher risk than non-DHH patients of using the emergency department (ED), have longer lengths of stay in the ED and report poor patient-provider communication. This qualitative study aimed to describe ED care-seeking and patient-centred care perspectives among DHH patients. METHODS: This qualitative study is the second phase of a mixed-methods study. The goal of this study was to further explain quantitative findings related to ED outcomes among DHH and non-DHH patients. We conducted semistructured interviews with 4 DHH American Sign Language (ASL)-users and 6 DHH English speakers from North Central Florida. Interviews were transcribed and analysed using a descriptive qualitative approach. RESULTS: Two themes were developed: (1) DHH patients engage in a complex decision-making process to determine ED utilization and (2) patient-centred ED care differs between DHH ASL-users and DHH English speakers. The first theme describes the social-behavioural processes through which DHH patients assess their need to use the ED. The second theme focuses on the social environment within the ED: patients feeling stereotyped, involvement in the care process, pain communication, receipt of accommodations and discharge processes. CONCLUSIONS: This study underscores the importance of better understanding, and intervening in, DHH patient ED care-seeking and care delivery to improve patient outcomes. Like other studies, this study also finds that DHH patients are not a monolithic group and language status is an equity-relevant indicator. We also discuss recommendations for emergency medicine. PATIENT OR PUBLIC CONTRIBUTION: This study convened a community advisory group made up of four DHH people to assist in developing research questions, data collection tools and validation of the analysis and interpretation of data. Community advisory group members who were interested in co-authorship are listed in the byline, with others in the acknowledgements. In addition, several academic-based co-authors are also deaf or hard of hearing.

Maternal Health Experiences of Black Deaf and Hard of Hearing Women in the United States.

INTRODUCTION: Deaf and hard of hearing (DHH) women are faced with numerous health inequities, including adverse pregnancy and birth outcomes. These outcomes are likely exacerbated for Black DHH women because of the intersection of disability and race. This study aimed to explore the pregnancy and birth experiences of Black DHH women to identify factors that influence their pregnancy outcomes. METHODS: Semistructured interviews were conducted between 2018 and 2019 with 67 DHH women who gave birth in the past five years. The present study represents a subgroup analysis of eight of the 67 women who self-identified as Black. Interviews were recorded, transcribed, and analyzed for emerging themes. RESULTS: Primary themes centered on unmet needs, barriers, and facilitators. Barriers included limited access to health information owing to communication difficulties and challenges obtaining accommodations. Key facilitators included the availability of sign language interpreters, familial support, and cultural understanding from providers. Participants emphasized these facilitators in their recommendations to providers and DHH women. Findings also underscored the critical role of recognizing cultural identity in perinatal health care delivery. CONCLUSIONS: This study outlines themes that affect pregnancy and birthing experiences among Black DHH women in the United States. Study implications include a call to action for providers to prioritize communication accommodations, accessible information, and compassionate care for all Black DHH women. Furthermore, future work should explore the impact of cultural and racial concordance between patients and their health care providers and staff. Understanding how intersectional identities affect perinatal health care access is crucial for reducing disparities among Black DHH women.

"There is No Communication": A Qualitative Examination of Deaf Signers' Experiences With Advance Care Planning.

Objective(s): Deaf American Sign Language (ASL) users are subject to health care disparities resulting from communication and language barriers. Currently, few resources on advance care planning and end-of-life care exist in ASL. This study explores Deaf ASL users' perceptions and experiences with end-of-life care and advance care planning. Methods: Semi-structured 1:1 interviews with Deaf signers were translated, and transcribed into English by a bilingual researcher. Investigators inductively coded transcripts and identified themes of barriers, facilitators, knowledge, and sources of information regarding end-of-life care. Participants' knowledge of advance care planning and completion of advance care planning documents were evaluated using a brief assessment. Results: Eleven Deaf ASL users participated in the study with two deaf interviewers. Participants reported barriers to end-of-life care including poor provider communication, inaccessible sources, and inadequate provision of accommodations, leading to patient distrust. Participants' understanding of advance care planning was facilitated by accessible forms of communication and their social networks, such as family, friends, and Deaf peers. Participants primarily gained information on end-of-life care from first-hand familial experience, peers, and media. Participants' mean advance care planning knowledge was 4.6 out of 15 (SD = 2.6). Conclusions: Deaf ASL users face scarce accessible resources around end-of-life care, lowering their ability to understand and proceed with advance care planning. Implementation of ASL accessible advance care planning educational tools in health care settings is needed.

The Association of Hearing Loss with Hospitalization.

BACKGROUND: Individuals with hearing loss (HL) are at higher risk for hospitalizations, and may be for readmissions, compared with their hearing peers. The objective of this prospective study was to confirm retrospective studies suggesting that HL increases hospital readmissions, and, if confirmed, possible causes for it. METHODS: A prospective cohort study of English-speaking patients >55 years old admitted to general medical and surgical floors at 2 large hospital systems in southeastern Michigan over a 2-year period was conducted. All patients underwent bedside audiometric testing. HL presence and severity were categorized using World Health Organization pure tone assessment parameters. Readmission rates, Charlson comorbidity index, socio-demographic and medical variables were obtained from Epic EMR databases. OUTCOMES: There were 1247 hospitalized patients enrolled. Of these, 76.8% had documented HL of which 50.5% (630) was mild HL and 26.3% (328) moderate or worse HL. Patients with any HL were older and more likely to be non-Hispanic, white, male, and had less education, lower health literacy, more comorbidities, and more difficulty communicating with their doctor. Readmission rates at 30 and 90-days were similar between HL and hearing groups, after adjusting for HL severity, Charlston index, and numerous potential confounders. CONCLUSION: Patients with HL do not seem to have higher rates of hospital readmissions. We did find high frequency of HL in hospitalized patients along with significant communication difficulties that patients had with their clinicians. These findings have implications for measures to improve patient-physician communication, potentially improving long-term health outcomes.

Healthcare communication access among deaf and hard-of-hearing people during pregnancy.

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.

Antenatal Hospital Use among Deaf and Hard of Hearing Women.

OBJECTIVE: Hearing loss is increasingly prevalent among younger adults, impacting health and health care use. Deaf and hard of hearing (DHH) women have a higher risk of chronic diseases, pregnancy complications, and adverse birth outcomes compared with hearing women. Health care utilization patterns during the perinatal period remain not well understood. The objective of this study was to examine differences in antenatal emergency department and inpatient utilization among DHH and non-DHH women. STUDY DESIGN: We conducted a retrospective cohort study design to analyze 2002 to 2013 Massachusetts Pregnancy to Early Life Longitudinal data to compare antenatal inpatient and emergency department use between DHH (N = 925) and hearing (N = 2,895) women with singleton deliveries. Matching was done based on delivery year, age at delivery, and birth parity in 1:3 case-control ratio. Demographic, socioeconomic, clinical, and hospital characteristics were first compared for DHH mothers and the matched control group using chi-squared tests and t-tests. Multivariable models were adjusted for sociodemographic and clinical characteristics. RESULTS: Among DHH women (N = 925), 49% had at least one emergency department visit, 19% had an observational stay, and 14% had a nondelivery hospital stay compared with 26, 14, and 6%, respectively, among hearing women (N = 28,95) during the antenatal period (all ps < 0.001). The risk of nondelivery emergency department visits (risk ratio [RR] 1.58; p < 0.001) and inpatient stays (RR = 1.89; p < 0.001) remained higher among DHH women compared with hearing women even after adjustment. Having four or more antenatal emergency department visits (7 vs. 2%) and two or more nondelivery hospital stays (4 vs. 0.4%) were more common among pregnant DHH women compared with their controls (all p-values < 0.001). CONCLUSION: The findings demonstrate that DHH women use emergency departments and inpatient services at a significantly higher rate than their hearing controls during the antenatal period. A systematic investigation of the mechanisms for these findings are needed. KEY POINTS: · Antenatal emergency department use is significantly higher among deaf and hard of hearing women.. · Antenatal hospitalizations are significantly higher among deaf and hard of hearing women.. · Hearing loss screening may identify those at risk for adverse pregnancy and birth outcomes..

Health Literacy and Difficulty Accessing Information About the COVID-19 Pandemic Among Parents Who Are Deaf and Hard-of-Hearing.

People who are deaf and hard-of-hearing (DHH) struggle with information marginalization and limited health literacy, challenging their ability to access information on preventing coronavirus disease 2019 (COVID-19). This study assessed the relationship between language preference, health literacy, and COVID-19 information barriers among parents who are DHH in the United States. Data were drawn from a larger study focused on individuals who are DHH who had given birth in the past 10 years. Respondents completed a web-based survey between March 2020 and July 2021. We segmented respondents by language preference [i.e., American Sign Language (ASL), English, or bilingual ASL/English] and used logistic regression models to test the hypothesis that language preference and health literacy were both associated with COVID-19 information marginalization. Of the total sample (N = 417), approximately 17% had limited health literacy, and 22% reported experiencing difficulty accessing information about COVID-19. In adjusted analyses, respondents with limited health literacy ([adjusted odds ratio] aOR = 2.245) and Hispanic ethnicity (aOR = 2.149) had higher risk of reporting information access barriers. There was no association between language preference and reporting COVID-19 information barriers. However, individuals who are DHH with limited health literacy were at higher risk of experiencing information marginalization during the ongoing COVID-19 pandemic, highlighting the need for tailored information based on access needs. [HLRP: Health Literacy Research and Practice. 2022;6(4):e310-e315.].

Spotlighting Disability in a Major Electronic Health Record: Michigan Medicine's Disability and Accommodations Tab.

People with disabilities represent the largest minority group in the United States and a priority population for health services research. Despite federal civil rights law, people with disabilities face inaccessible health care environments that fail to accommodate their disability. We present Michigan Medicine's Disability and Accommodations Tab. This patient-facing questionnaire and shared data field in the electronic health record enables the collection and reporting of patient disability-related accommodations. The Disability Tab seeks to address provider- and clinic staff-reported barriers to providing accommodations and fosters an opportunity to redesign health care to meet the needs of people with disabilities.

Have Almost Fifty Years Of Disability Civil Rights Laws Achieved Equitable Care?

For almost fifty years, federal civil rights laws such as Section 504 of the Rehabilitation Act of 1973, the Americans with Disabilities Act (ADA) of 1990 and the ADA Amendments Act of 2008, and Section 1557 and other provisions of the 2010 Patient Protection and Affordable Care Act have prohibited discrimination against Americans with disabilities, including in health care. Despite these laws, disabled Americans continue to experience disparities in health and health care, from preventive care to home and community-based services. In its 2022 Health Equity Framework for People with Disabilities, the National Council on Disability highlighted some of these disparities and recommended remedies. To explore these concerns, this article examines disability inequities and potential solutions within six areas. It concludes by recommending the ratification of the 2006 United Nations Convention on the Rights of Persons with Disabilities to reinvigorate US efforts to maximize the health and dignity of disabled Americans and support their full participation in the community.

Communication Access In Mental Health And Substance Use Treatment Facilities For Deaf American Sign Language Users.

Deaf and hard of hearing (DHH) American Sign Language users experience significant mental health-related disparities compared with non-DHH English speakers. Yet there is little empirical evidence documenting this priority population's communication access in mental health and substance use treatment facilities. This study measured mental health and substance use treatment facilities' noncompliance to Section 1557 of the Affordable Care Act (ACA), which requires health care facilities receiving government funds to provide effective communication access, such as a sign language interpreter, to DHH patients. Using nationally representative data from the Substance Abuse and Mental Health Services Administration, we found that 41 percent of mental health facilities and 59 percent of substance use treatment facilities receiving public funds reported not providing services in sign language in 2019 and were thus noncompliant with the ACA's mandate to provide accessible communication to DHH patients. We mapped these data to display state-level noncompliance, and we make detailed recommendations at the policy, facility, and provider levels. These include monitoring noncompliance among government-funded facilities, expanding state-by-state mental health licensure reciprocity and telehealth policies to improve access to American Sign Language-fluent mental health professionals and addiction counselors, establishing systematic processes to collect information on disability-related accommodation needs, and increasing the workforce of DHH American Sign Language-fluent providers.

A call for disability health curricula in medical schools.

People with disabilities encounter significant health and health-care inequities yet disability health training in medical education remains inadequate. This Scientific Life article examines the need to integrate disability health education into medical school curricula and shares successful training examples that can serve as a framework for how to accomplish this.

Emergency department condition acuity, length of stay, and revisits among deaf and hard-of-hearing patients: A retrospective chart review.

OBJECTIVE: Deaf and hard-of-hearing (DHH) patients are understudied in emergency medicine health services research. Theory and limited evidence suggest that DHH patients are at higher risk of emergency department (ED) utilization and poorer quality of care. This study assessed ED condition acuity, length of stay (LOS), and acute ED revisits among DHH patients. We hypothesized that DHH patients would experience poorer ED care outcomes. METHODS: We conducted a retrospective chart review of a single health care system using data from a large academic medical center in the southeast United States. Data were received from the medical center's data office, and we sampled patients and encounters from between June 2011 and April 2020. We compared DHH American Sign Language (ASL) users (n = 108), DHH English speakers (n = 358), and non-DHH English speakers (n = 302). We used multilevel modeling to assess the differences among patient segments in outcomes related to ED use and care. RESULTS: As hypothesized, DHH ASL users had longer ED LOS than non-DHH English speakers, on average 30 min longer. Differences in ED condition acuity, measured through Emergency Severity Index and triage pain scale, were not statistically significant. DHH English speakers represented a majority (61%) of acute ED revisit encounters. CONCLUSIONS: Our study identified that DHH ASL users have longer ED LOS than non-DHH English speakers. Additional research is needed to further explain the association between DHH status and ED care outcomes (including ED LOS and acute revisit), which may be used to identify intervention targets to improve health equity.

Call to Action: Eliminate Barriers Faced by Medical Students With Disabilities.

When physicians have a disability or chronic condition, they can offer deeper insight and ability into managing the needs of patients with similar conditions. Yet an alarming 2021 survey found that only 40.7% of physicians feel confident that they provide the same level of care to people with disabilities (PWD) as those without. This may contribute to troubling health care disparities for the over 61 million Americans living with disabilities. In a recent report, The American Medical Association (AMA) recognized that increased concordance between patients and physicians with disabilities is key to resolving health care inequities for PWD, yet although 1 in 5 patients reports a disability, only 1 in 33 physicians identifies as such. This is because prospective medical students with disabilities face many barriers in medical education and practice. We call for specific changes to medical school admission processes and curricula to promote a more just and diverse workforce which includes more physicians with disabilities.

Emergency department utilization among deaf and hard-of-hearing patients: A retrospective chart review.

BACKGROUND: Deaf and hard-of-hearing (DHH) patients are an underserved priority population. Existing, although contextually limited, findings indicate that DHH patients are more likely to use the emergency department (ED) than non-DHH patients. However, little attention has been given to the differences in ED utilization by patients' language modalities. OBJECTIVE: We hypothesized that DHH ASL-users and DHH English speakers would have higher rates of ED utilization in the past 36 months than non-DHH English speakers. METHODS: We used a retrospective chart review design using data from a large academic medical center in the southeastern United States. In total, 277 DHH ASL-users, 1000 DHH English speakers, and 1000 non-DHH English speakers were included. We used logistic regression and zero-inflated modeling to assess relations between patient segment and ED utilization in the past 12- and 36-months. We describe primary ED visit diagnosis codes using AHRQ Clinical Classifications Software. RESULTS: DHH ASL users and DHH English speakers had higher adjusted odds ratios of using the ED in the past 36-months than non-DHH English speakers (aORs = 1.790 and 1.644, respectively). Both DHH ASL users and DHH English speakers had a higher frequency of ED visits among patients who used the ED in the past 36-months (61.0% and 70.1%, respectively). The most common principal diagnosis code was for abdominal pain, with DHH English speakers making up over half of all abdominal pain encounters. CONCLUSIONS: DHH ASL users and DHH English speakers are at higher risk of using the ED compared to non-DHH English speakers. We call for additional attention on DHH patients in health services and ED utilization research.

Opioid use disorder-related emergency department visits among deaf or hard of hearing adults in the United States.

BACKGROUND: Despite the devastating consequences of the opioid epidemic, little is known about its impact on the deaf and hard of hearing (DHH) community. OBJECTIVE: To determine risk of OUD-related ED visits, ED visits involving a prescription or non-prescription opioid overdose, and mortality during OUD-related ED visits among DHH adults, compared to non-DHH adults. METHODS: We analyzed the combined 2016-2017 National Emergency Department Sample (NEDS). We identified DHH adults using ICD-10-CM codes, extracting 63,865 case records of ED visits among DHH adults ages 18-64. The control group of non-DHH adult ED visits was age-, sex-, and admission year-matched in a 1:3 case-control ratio. We conducted multi-level logistic regression models for the binary dependent variables. Covariates included sociodemographic, hospital, and clinical characteristics. RESULTS: In our unadjusted models, compared to non-DHH adults, DHH adults had significantly higher risk for OUD-related ED visits (OR = 1.69, 95%CI: 1.59-1.80, p < 0.001), ED visits involving prescription (OR = 1.80, 95%CI: 1.47-2.20, p < 0.001) and non-prescription opioid overdose (OR = 1.31, 95%CI: 1.05-1.63, p < 0.05), and mortality during OUD-related ED visits (OR = 2.22, 95%CI: 1.21-4.08, p < 0.05). However, after adjustment for confounding variables, including comorbid chronic pain and psychiatric conditions, except OUD-related ED visits, the risk for ED visits involving prescription and non-prescription opioid overdose, and OUD-related mortality became non-significant. CONCLUSIONS: Compared to adults without hearing loss, DHH non-elderly adults are at a higher risk of OUD-related ED visits. Future research is needed to understand the interplay between chronic pain, psychiatric conditions, and OUD among DHH adults.