Multiple Chronic Condition Emergency Department Visits Among U.S. Adults: Disparities at the Intersection of Intellectual and Developmental Disabilities Status and Race or Ethnicity.

Background: The study aims to examine the risk of multiple chronic condition (MCC)-related emergency department (ED) visits, MCC-related hospitalization following the ED visit, and mortality after MCC-related ED visits among adults with intellectual and developmental disabilities (IDD), adults compared with nondisabled adults by race and ethnicity, using the 2020 Healthcare Cost and Utilization Project Nationwide Emergency Department Sample. Methods: We identified IDD adults using ICD-10-CM codes, extracting 296,394 nondisabled adults and 99,538 IDD adults, of which 67,771 are white, 19,164 are black, 10,667 are Latinx, and 1936 are other race or multiple race. The control group of nondisabled adults was age-matched and sex-matched in a 1:3 case-control ratio. We conducted multilevel Poisson regression models for the binary-dependent variables and adjusted for covariates, including sociodemographic and hospital characteristics. Results: The results show that across all racial/ethnic groups, individuals with IDD have significantly higher rates of MCC-related ED visits, hospitalizations, and deaths compared with nondisabled. Moreover, the disparities are more pronounced for individuals from racial/ethnic minority groups. Black and Latinx individuals with IDD have significantly higher rates of MCC-related ED visits and poor outcomes than their white counterparts with and without IDD. Conclusions: The findings from this study highlight significant racial and ethnic disparities in the risk of MCC-related ED visits, hospitalization following the ED visit, and mortality through the ED among IDD adults. This underscores the importance of adopting a multifaceted approach that addresses the social determinants of health, enhances access to health care, improves quality of care, and enhances care coordination.

Family Caregivers' Attitudes and Perspectives About the Sexual and Reproductive Health of Women With Intellectual and Developmental Disabilities: An Online Survey.

Although sexual and reproductive health is critically important for women with intellectual and developmental disabilities (IDD), there is limited research elucidating the role of family caregivers in assisting women with IDD access sexual and reproductive health services and information. Understanding the family caregivers' attitudes and perspectives is essential to improving access to sexual and reproductive health services and information for women with IDD. A cross-sectional online survey of family caregivers of women with IDD was administered between June and October 2018. Quantitative analysis was conducted for closed-ended responses, and qualitative analysis was conducted for open-ended responses. The analytic sample included 132 family caregivers. Most participants were parents and reported being closely involved in their family member's access to sexual and reproductive health services and information. Although most participants expressed that sexual and reproductive health services and information are essential for women with IDD, qualitative analysis of participants' open-ended responses revealed both supportive and restrictive attitudes and perspectives on sexual and reproductive health services and information for women with IDD. Supportive attitudes and perspectives included (1) "knowledge is power;" (2) supported decision-making; and (3) protection against sexual abuse. Restrictive attitudes and perspectives included (1) dependent on the individual; (2) lack of autonomy; and (3) placing responsibility on disability. Greater attention from policymakers and practitioners to systems-level changes, including universal and accessible sexual education for women with IDD, supported decision-making, and sexual abuse prevention measures, are urgently needed.

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.

Outcomes of Person-Centered Planning in Medicaid Home- and Community-Based Services.

BACKGROUND AND OBJECTIVES: Person-centered planning (PCP) allows recipients of home- and community-based service (HCBS) to plan services and supports according to their preferences and needs. The extent to which HCBS systems engage in PCP and evidence for the relationship between PCP and beneficiary outcomes are limited. We examine the prevalence of PCP among HCBS recipients and the relationship between PCP and person-reported outcomes. RESEARCH DESIGN AND METHODS: We used the 2018-2019 National Core Indicators-Aging and Disability survey, collected among adult Medicaid HCBS recipients in 12 states (n = 5,849). We examined 2 general PCP measures (1 on decision making and another on whether service plans reflected preferences/choices). We also constructed a scale to assess the fidelity of recipients' service planning meeting to the PCP process. Outcomes included unmet service needs and community living (i.e., participation, control, and satisfaction). We examined recipient characteristics associated with PCP and used adjusted logistic regression models to assess the relationship between PCP and outcomes. RESULTS: About 72% of HCBS recipients were involved in decision making, 72% reported their service plan reflected their preferences/choices, and 47% had meetings that scored "high fidelity" on the PCP fidelity scale. PCP measures were consistently related to lower likelihood of unmet service needs and greater likelihood of experiencing community living outcomes. DISCUSSION AND IMPLICATIONS: Findings suggest PCP is important for adequately meeting service needs and ensuring community living among HCBS beneficiaries. Additional standardized measures should be developed to facilitate quality improvement and accountability for delivering person-centered HCBS.

Preconception health risks by presence and type of disability among U.S. women.

BACKGROUND: Poor preconception health may contribute to adverse perinatal outcomes among women with disabilities. While prior research has found higher prevalence of preconception health risks among women with versus without disabilities, existing U.S. studies have not assessed how preconception health risks may differ by disability type. Understanding such differences is relevant for informing and targeting efforts to improve health opportunities and optimize pregnancy outcomes. OBJECTIVE: This cross-sectional study examined preconception health in relation to disability type among reproductive-age women in the United States. METHODS: We analyzed 2016-2019 data from the Behavioral Risk Factor Surveillance System to estimate the prevalence of 19 preconception health risk among non-pregnant women 18-44 years of age. We used modified Poisson regression to compare women with different types of disability to non-disabled women. Disability categories included: 1) hearing difficulty only; 2) vision difficulty only; 3) physical/mobility difficulty only; 4) cognitive difficulty only; 5) multiple or complex disabilities (including limitations in self-care or independent living activities). Multivariable analyses adjusted for other sociodemographic characteristics such as age and marital status. RESULTS: Women with each disability type experienced a higher prevalence of indicators associated with poor preconception health compared to women with no disabilities. The number and extent of health risks varied substantially by disability type. Women with cognitive disabilities and women with multiple or complex disabilities experienced the greatest risk. CONCLUSIONS: Addressing the specific preconception health risks experienced by women with different types of disabilities may help reduce adverse perinatal outcomes for disabled women and their infants.

Perinatal health framework for people with intellectual disability.

We propose a framework for guiding research on perinatal health in people with intellectual disability (ID). We developed this framework based on the perinatal health framework for people with physical disabilities, American Association on Intellectual and Developmental Disabilities conceptual framework of human functioning, disability reproductive justice framework, trauma-informed care, and socio-ecological model. The framework reflects health outcomes of birthing people with ID and their infants that result from interactions of factors across the life course at policy (health, social, and disability policies), community (attitudes, social and physical environment), institutional (health care delivery-related factors, access to information/resources), interpersonal (social determinants of health/histories of trauma, social support, interactions with service-providers), and individual levels (demographics, intellectual functioning, adaptive behavior, health conditions, genetic factors, psychosocial factors, health behaviors). This framework will facilitate research to identify factors leading to perinatal health disparities in people with ID and development and evaluation of resources to address them.

Pre-Pregnancy Health Risks by Presence and Extent of Disability, 2019-2020.

INTRODUCTION: Prior studies have shown that, compared to non-disabled women, women with disabilities have a higher burden of preconception mental and physical health risks that are associated with adverse pregnancy outcomes. This cross-sectional study assesses how the extent of disability relates to pre-pregnancy health risks. METHODS: This study used 2019-2020 PRAMS data from 22 sites that included the Washington Group Short Set of Questions on Disability (n=37,006). In 2023, associations between extent of disability (none [reference group], some difficulty, or a lot of difficulty) and preconception health risks were examined using multivariable Poisson regression with robust standard errors to calculate adjusted prevalence ratios (aPRs) and 95% CIs while controlling for sociodemographic characteristics. Preconception health risks included smoking, heavy drinking, high blood pressure, diabetes, no multivitamin use, and experiencing physical abuse, depression, or obesity. Individual risks were analyzed, as well as the total number of risks experienced. RESULTS: Of respondents, 33.6% had some difficulty and 6.3% had a lot of difficulty. The likelihood of experiencing preconception health risks increased with extent of disability. Compared to respondents with no difficulty, those with some or a lot of difficulty had a higher prevalence of experiencing 1-2 health risks (aPR=1.13, 95% CI 1.09, 1.18; aPR=1.20; 95% CI 1.53, 2.25) and 3+ health risks (aPR=1.86, 95% CI 1.53, 2.25; aPR=2.42, 95% CI 1.98, 2.97), respectively. CONCLUSIONS: Disabled women, especially those with more difficulty, are vulnerable to preconception health risks that could potentially be mitigated before conception. These findings highlight the need for enhanced efforts to support preconception health of disabled women.

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.

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.

Clinician-reported barriers to providing perinatal care to women with intellectual and developmental disabilities.

Background: Research suggests that women with intellectual and developmental disabilities are at increased risk for adverse pregnancy outcomes. Further, they report unmet perinatal care needs. This qualitative study examined clinician perspectives on barriers to providing perinatal care to women with intellectual and developmental disabilities. Method: We conducted semi-structured interviews and one focus group with US obstetric care clinicians (n=17). We used a content analysis approach to code data and analyse them for larger themes and relationships. Results: The majority of participants were white, non-Hispanic, and female. Participants reported barriers providing care to pregnant women with intellectual and developmental disabilities across individual (e.g., communication challenges), practice (e.g., identification of disability status), and system levels (e.g., lack of clinician training). Conclusions: Clinician training and evidence-based guidelines for perinatal care of women with intellectual and developmental disabilities as well as services and supports during pregnancy are needed.

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..

Pregnancy, Fetal, and Neonatal Outcomes Among Women With Traumatic Brain Injury.

OBJECTIVE: There have been no systematic studies of pregnancy outcomes among women with traumatic brain injury (TBI), potentially limiting informed clinical care for women with such injuries. The purpose of this exploratory study was to evaluate pregnancy and fetal/neonatal outcomes among women with a TBI diagnosis recorded during their delivery hospitalization compared with women without TBI. SETTING: In this cross-sectional study, we identified women with delivery hospitalizations using 2004-2014 data from the Nationwide Inpatient Sample of the Health Care and Cost Utilization Project. PARTICIPANTS: We identified deliveries to women with a TBI diagnosis on hospital discharge records, which included all diagnoses recorded during the delivery, and compared them with deliveries of women without a TBI diagnosis. MAIN MEASURES: Pregnancy outcomes included gestational diabetes; preeclampsia/eclampsia; placental abruption; cesarean delivery; and others. Fetal/neonatal outcomes included preterm birth; stillbirth; and small or large gestational age. DESIGN: We modeled risk for each outcome among deliveries to women with TBI compared with women without TBI, using multivariate Poisson regression. Models included sociodemographic and hospital characteristics; secondary models added clinical characteristics (eg, psychiatric disorders) that may be influenced by TBI. RESULTS: We identified 3 597 deliveries to women with a TBI diagnosis and 9 106 312 deliveries to women without TBI. Women with TBI were at an increased risk for placental abruption (relative risk [RR] = 2.73; 95% CI, 2.26-3.30) and associated sequelae (ie, antepartum hemorrhage, cesarean delivery). Women with TBI were at an increased risk for stillbirth (RR = 2.55; 95% CI, 1.97-3.29) and having a baby large for gestational age (RR = 1.30; 95% CI, 1.09-1.56). Findings persisted after controlling for clinical characteristics. CONCLUSIONS: Risk for adverse pregnancy outcomes, including placental abruption and stillbirth, were increased among women with TBI. Future research is needed to examine the association between TBI and pregnancy outcomes using longitudinal and prospective data and to investigate potential mechanisms that may heighten risk for adverse outcomes.

Social Network Diversity and Mental Health Among Mothers of Individuals With Autism.

The present study examined the associations between networks of social relationships and psychological well-being among mothers of adolescents and adults with autism (n = 352) over a 12-year period of time. A structural equation modeling approach was used to delineate the relative impacts of network size and relationship diversity on maternal mental health, and to assess whether such effects are bidirectional. Mothers with more diverse relationships experienced reductions in depression and anxiety symptoms over time, and the psychological benefits of diversity remained after adjusting for network size. Results also suggest bidirectional links between network size, diversity, and maternal mental health. Research and clinical implications are discussed.

Partner Violence Hospitalizations Among Adults With Intellectual Disabilities.

INTRODUCTION: The objective of this study is to determine the RR of intimate partner violence‒related hospitalization among men and women with and without intellectual disabilities. METHODS: This is a retrospective cohort study using Healthcare Cost and Utilization Project, National Inpatient Sample, 2013-2019. Adults with intellectual disabilities were identified using diagnosis codes. A control group without intellectual disabilities was matched in a 1:5 ratio. A total of 1,179,282 hospitalization records were analyzed, with identified cases of 112,565 men and 83,982 women with intellectual disabilities. Analyses were conducted in 2021 and 2022. RESULTS: Men with intellectual disabilities (RR=6.00; 95% CI=4.43, 8.13; p<0.001) were at higher risk for intimate partner violence‒related hospitalizations than men without intellectual disabilities, as were women without intellectual disabilities (RR=3.36; 95% CI=2.57, 4.39; p<0.001). Women with intellectual disabilities experienced the highest risk of intimate partner violence‒related hospitalizations (RR=16.44; 95% CI=12.60, 21.45; p<0.001). Risks remained robust after adjusting for sociodemographic and hospital characteristics. CONCLUSIONS: Intellectual disability and female sex compound to elevate the risk of intimate partner violence‒related hospitalizations. This study underscores the need for improved and specialized service provision across healthcare, legal, criminal, and other systems to promote safety and healing for people with disabilities (especially for those with intellectual disabilities) who are survivors of intimate partner violence.