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BACKGROUND: People with communication disabilities (CDs), which includes disabilities in speech, language, voice and/or hearing, experience health and healthcare disparities. A barrier to accessing high-quality, equitable care is the lack of effective communication between patients and their providers. OBJECTIVE: In designing a patient-prompted tool to facilitate communication, we analyzed qualitative feedback on communication strategies and the experience of people with CDs, caregivers, and providers in healthcare encounters. We aimed to describe communication strategies that patients with CDs find most useful and optimize a tool for patients to share their communication strategy preferences during clinical encounters. While patient-provider communication is paramount in every interaction, we aimed to highlight the intricacies of optimizing communication for this population. DESIGN: We performed a qualitative study utilizing focus groups and interviews with patients with CDs, their caregivers, and healthcare providers. PARTICIPANTS: A total of 46 individuals participated in focus groups or interviews; 26 participants self-reported a CD, nine were caregivers, and 11 were providers. Participants represented diverse types of CDs, including stuttering, aphasia, hearing loss, and people with autism or cerebral palsy who use assistive technology to communicate. APPROACH: Analysis of qualitative interview and focus group data was guided by a qualitative content analysis approach. KEY RESULTS: We identified three themes: (1) While communication strategies should be individualized, participants agreed upon a consolidated list of best strategies and accommodations. We used this consolidated list to finalize tool development. (2) Patients and providers preferred disclosure of the CD and desired communication strategies before the appointment. (3) Providers often do not use communication strategies and accommodations during clinical encounters. CONCLUSIONS: For patients with CDs, it is critical to acknowledge and document the CD and individualize communication strategies during healthcare visits to facilitate communication. Studies are needed to evaluate whether improved communication strategy usage leads to improved health outcomes for this population.
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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.
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Personas con Deficiencia Auditiva , Embarazo , Humanos , Estados Unidos , Femenino , Salud Materna , Accesibilidad a los Servicios de Salud , Comunicación , Resultado del EmbarazoRESUMEN
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.
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Sordera , Pérdida Auditiva , Personas con Deficiencia Auditiva , Humanos , Embarazo , Femenino , Comunicación , Accesibilidad a los Servicios de SaludRESUMEN
PURPOSE: Nearly 20% of U.S. Americans report a hearing loss, yet our current health care system is poorly designed and equipped to effectively care for these individuals. Individuals with hearing loss report communication breakdowns, inaccessible health information, reduced awareness and training by health care providers, and decreased satisfaction while struggling with inadequate health literacy. These all contribute to health inequities and increased health care expenditures and inefficiencies. It is time to reframe the health care system for these individuals using existing models of best practices and accessibility to mitigate inequities and improve quality of care. METHOD: A review of system-, clinic-, provider-, and patient-level barriers, along with existing and suggested efforts to improve care for individuals with hearing loss, are presented. RESULTS: These strategies include improving screening and identification of hearing loss, adopting universal design and inclusion principles, implementing effective communication approaches, leveraging assistive technologies and training, and diversifying a team to better care for patients with hearing loss. Patients should also be encouraged to seek social support and resources from hearing loss organizations while leveraging technologies to help facilitate communication. CONCLUSIONS: The strategies described introduce actionable steps that can be made at the system, clinic, provider, and patient levels. With implementation of these steps, significant progress can be made to more proactively meet the needs of patients with hearing loss. Presentation Video: https://doi.org/10.23641/asha.21215843.
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Sordera , Pérdida Auditiva , Comunicación , Atención a la Salud , Personal de Salud , Humanos , Estados UnidosRESUMEN
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.].
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COVID-19 , Alfabetización en Salud , Personas con Deficiencia Auditiva , Humanos , Pandemias/prevención & control , Acceso a la InformaciónRESUMEN
The rostral migratory stream (RMS) facilitates neuroblast migration from the subventricular zone to the olfactory bulb throughout adulthood. Brain lesions attract neuroblast migration out of the RMS, but resultant regeneration is insufficient. Increasing neuroblast migration into lesions has improved recovery in rodent studies. We previously developed techniques for fabricating an astrocyte-based Tissue-Engineered RMS (TE-RMS) intended to redirect endogenous neuroblasts into distal brain lesions for sustained neuronal replacement. Here, we demonstrate that astrocyte-like-cells can be derived from adult human gingiva mesenchymal stem cells and used for TE-RMS fabrication. We report that key proteins enriched in the RMS are enriched in TE-RMSs. Furthermore, the human TE-RMS facilitates directed migration of immature neurons in vitro. Finally, human TE-RMSs implanted in athymic rat brains redirect migration of neuroblasts out of the endogenous RMS. By emulating the brain's most efficient means for directing neuroblast migration, the TE-RMS offers a promising new approach to neuroregenerative medicine.
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Astrocitos/fisiología , Células-Madre Neurales/trasplante , Neuronas/fisiología , Ingeniería de Tejidos , Animales , Humanos , Masculino , Neurogénesis , Ratas , Ratas DesnudasRESUMEN
Following peripheral nerve injury comprising a segmental defect, the extent of axon regeneration decreases precipitously with increasing gap length. Schwann cells play a key role in driving axon re-growth by forming aligned tubular guidance structures called bands of Büngner, which readily occurs in distal nerve segments as well as within autografts - currently the most reliable clinically-available bridging strategy. However, host Schwann cells generally fail to infiltrate large-gap acellular scaffolds, resulting in markedly inferior outcomes and motivating the development of next-generation bridging strategies capable of fully exploiting the inherent pro-regenerative capability of Schwann cells. We sought to create preformed, implantable Schwann cell-laden microtissue that emulates the anisotropic structure and function of naturally-occurring bands of Büngner. Accordingly, we developed a biofabrication scheme leveraging biomaterial-induced self-assembly of dissociated rat primary Schwann cells into dense, fiber-like three-dimensional bundles of Schwann cells and extracellular matrix within hydrogel micro-columns. This engineered microtissue was found to be biomimetic of morphological and phenotypic features of endogenous bands of Büngner, and also demonstrated 8 and 2× faster rates of axonal extension in vitro from primary rat spinal motor neurons and dorsal root ganglion sensory neurons, respectively, compared to 3D matrix-only controls or planar Schwann cells. To our knowledge, this is the first report of accelerated motor axon outgrowth using aligned Schwann cell constructs. For translational considerations, this microtissue was also fabricated using human gingiva-derived Schwann cells as an easily accessible autologous cell source. These results demonstrate the first tissue engineered bands of Büngner (TE-BoBs) comprised of dense three-dimensional bundles of longitudinally aligned Schwann cells that are readily scalable as implantable grafts to accelerate axon regeneration across long segmental nerve defects.