Disability and Health Journal最新文献

Background: Direct support professionals (DSPs) play a key role in supporting the health and quality of life of people with intellectual and developmental disabilities (IDD). Despite the importance of their roles, the DSP workforce also represents a major threat to the health and quality of life of people with IDD due to the instability of the workforce, and the consequences of this instability.

Objective: We theorize and purport that the status, availability, and quality of the DSP workforce should be considered a social determinant of health of people with IDD. Thus, the aim of this study was to examine the relationship between DSP turnover, and people with IDD's health and social determinants of health-related outcomes.

Methods: We analyzed secondary Personal Outcome Measures (POM) data from 5457 people with IDD (January 2018 and December 2024) using descriptive statistics, binary logistic regressions, and negative binomial regression models.

Results: People with IDD who experienced DSP turnover were significantly less likely to have health outcomes present, and to receive person-centered health supports (odds ratios ranged from 0.50 to 0.77). People with IDD who experienced DSP turnover also had a 19.10 % decrease in other social determinants of health-related outcomes.

Conclusions: The harms of an unstable DSP workforce can be two-fold, in that it both directly negatively impacts people with IDD's health outcomes and health services, and it negatively impacts other areas of people with IDD's lives that also serve as social determinants of health, which also go on to hinder people with IDD's health.

Background: Disability-centric curricula in the education of health providers are often limited and highly variable across programs. It is unclear whether disability-centric content is tested in the licensure exams of health professions.

Objective: To evaluate the congruency of the licensure exams of eight health professions with the Core Competencies on Disability for Health Care Education.

Methods: We performed a cross-sectional analysis of publicly available official exam content outlines via key word search and manual mapping to identify the presence of Core Competencies.

Results: The median number of Core Competencies addressed by the content outlines was three (range 1-4). The most common Core Competency was Competency 2 (professionalism and patient-centered care; 8/8 exams), often in the context of using interpretive services or accessible forms of communication. No content outline addressed Competency 4 (teams and systems-based care), and only one addressed Competency 3 (legal obligations). The exams for physical therapy, occupational therapy, and clinical social work addressed the most competencies (4/6); the exam for physician assistants addressed the fewest (1/6). The median number of uses of the words "disabilit (y/ies)" and "disabl (ed/ing)" within content outlines was 1.5 (range: 0-11), with two outlines lacking any uses.

Conclusion: On average, health professions licensure exams, as proxied by their content outlines, addressed only half of the Core Competencies on Disability and often in a limited, specific manner. With the high and increasing prevalence of disability among American adults, health professions should strive to educate and assess their students using a disability-competent curriculum.

Background: Community participation is an important health outcome among people with multiple sclerosis (PwMS) and includes subjective (e.g., satisfaction) and objective aspects (e.g., frequency). Conceptual literature emphasizes the need for measuring both types of aspects to fully understand participation, yet empirical evidence remains limited.

Objective: To examine the relationship between subjective and objective aspects of community participation and their associations with person-related and environmental factors.

Methods: A mixed methods design was used. Correlation analyses of previously collected self-reported and GPS-based data from 100 PwMS assessed statistical associations between subjective and objective participation. Four focus groups were conducted with 24 PwMS discussing the relationship between participation satisfaction and performance. Qualitative data were analyzed using content analysis.

Results: Moderate to strong correlations (.4-.78, p < 0.001) were found within objective (trip frequency, distance, duration, and activity space) and subjective participation measures (perceived ability and satisfaction). However, associations between subjective and objective aspects were mostly weak (.2-.32, p < 0.05). Person-related and environmental factors showed varying correlations, with generally stronger associations for subjective participation measures (.17 to -.57, p < 0.01) than objective measures (.16-.36, p < 0.05). Aligned with quantitative results, qualitative themes revealed that greater participation quantity may facilitate satisfaction, but frequent and extensive participation is not necessary to reach satisfaction.

Conclusions: This study provides integrated quantitative and qualitative evidence that subjective and objective aspects of participation are related but distinct. Attention must be paid to the divergence between these aspects to address real-world barriers.

Electronic Health Records (EHRs) are a leading source of epidemiological data, but often lack information on a patient's disability status. This gap hampers our ability to analyse the full scope of health inequities faced by people with disabilities. Current approaches to identify disability within EHRs have limitations because of inadequate proxies for disability or issues linking data sources. Machine learning (ML) offer unprecedented opportunities to create disability markers within EHRs, such as through unsupervised learning to classify disability groups and Natural Language Processing to extract relevant information from clinical notes. These methods have the potential improve disability-disaggregated analyses within EHRs to uncover patterns and provide a more comprehensive understanding of healthcare pathways and outcomes for people with disabilities. Leveraging these approaches to improve disability data in EHRs is a critical step towards improving health inequities research, though require strong adherence to ethical guidelines and validation of these new approaches.

Background: Deaf American Sign Language users are severely underserved in the U.S. healthcare system. To address longstanding inaccessibility and mistrust, our Deaf community-led team produced a film to train providers to better serve Deaf patients - Vital Signs.

Objective: We conducted a two-arm randomized controlled trial to evaluate preliminary efficacy of Vital Signs among healthcare providers and health professions students.

Methods: Participants were randomly assigned to review Vital Signs or intervention as usual - standard written guidance about working with Deaf patients. Intervention completers were invited to participate in a simulation with a Deaf standardized patient. Three Deaf team members were trained to review simulation recordings and complete validated patient self-report measures of provider behavior: Healthcare Provider Cultural Competency; Ask, Understand, and Remember Assessment; and Wake Forest Physician Trust Scale.

Results: Of 208 enrolled participants, 52 completed all study components and were included in final analyses. A clear pattern of results emerged - participant age influenced learning and behavior change in response to different training strategies. Participants aged 33+ who viewed Vital Signs scored higher on content knowledge compared to same-aged peers who reviewed training as usual, but worse across measures of cultural competency, communication skill, and trust-building. An opposite pattern emerged for participants younger than 33 years - those who watched Vital Signs exhibited greater cultural competence, communication skill, and trust-building abilities than same-aged peers who reviewed standard written guidance.

Conclusion: Future steps include an implementation trial of various Vital Signs training configurations, evaluating strategies for training health professions students versus experienced providers.

Background: Functional limitation (FL) encompasses impaired performance across six physical and cognitive health domains. While the impact of FL on health outcomes is recognized, its longitudinal association with survivorship in United States (US) adults remains underexplored.

Objective: Using the 2011 National Health Interview Survey and the associated 2019 Linked Mortality File, this survival analysis evaluates whether US adults who report experiencing FLs are at a greater risk of all-cause and premature mortality compared to adults who do not report any FLs.

Methods: We categorized respondents (n = 15,958) into three FL groups (no difficulty, some difficulty, a lot of difficulty) and employed survey-weighted Cox regression models to estimate hazard ratios (HRs) for mortality outcomes, adjusting sequentially for demographic, socioeconomic, and health-related variables.

Results: At baseline, 35.7 % of participants reported at least some FL, and 10.2 % reported a lot of FL. Those with a lot of FL faced higher risks for all-cause mortality (adjusted Hazard Ratio (aHR) = 3.24; 95 % Confidence Interval (CI): 2.71-3.87) and premature mortality (aHR = 2.79; 95 % CI: 1.83-4.26) in the fully-adjusted models. These associations attenuated through sequential adjustment, suggesting confounding by sociodemographic and health-related factors.

Conclusion: Though the FL-mortality link weakens after adjusting for sociodemographic and health factors, FL remains a key marker of vulnerability, especially in older adults with multimorbidity. Future research should explore the impact of FLs on cause-specific mortality and closely examine which of the six domains of functionality are independently related to survivorship.

Background: Women with disabilities encounter unique social and structural barriers that hinder their access to quality reproductive healthcare, particularly in rural settings. These barriers are often exacerbated by societal stigma, discrimination, and inadequate disability-inclusive services.

Objective: The objective of this qualitative study is to explore the reproductive experiences of women with disabilities in rural Türkiye, focusing on the pregnancy, childbirth, and postpartum periods. The study aims to identify the social and systemic barriers these women face in accessing and navigating maternal health services in these settings.

Methods: This qualitative research was conducted in a rural district in southern Türkiye between May and July 2024. Semi-structured, in-depth interviews were carried out with 19 women aged 18-49 with various types of disabilities. Data were analyzed using thematic analysis techniques.

Results: Four central themes emerged from the participants' narratives: (1) experiences of social judgment and emotional distress during pregnancy, (2) contrasting birth experiences influenced by the presence or absence of inclusive care, (3) mixed experiences of support during the postpartum period, and (4) identified expectations and encountered social barriers in motherhood. Many participants reported encountering significant stigma, prejudice, and emotional mistreatment from family, community, and healthcare providers. Conversely, the presence of supportive, disability-aware midwives played a vital role in positive maternal experiences, promoting resilience among participants.

Conclusion: The reproductive journeys of disabled women in rural communities are significantly impacted by stigma and systemic inadequacies. Enhancing disability-focused education for healthcare providers, improving postpartum support systems, and addressing social stigma through public education are crucial steps toward achieving reproductive equity.

Background: Affordable housing provides a critical foundation for children's health. Yet little is known about how households of children with disabilities engage in federal rental assistance programs.

Objective: This study examines the rates of participation in HUD rental assistance programs among households of children with disabilities in 2023 and assesses the odds of these households residing in specific HUD rental assistance programs.

Methods: This paper engages a population level cross-sectional analysis of HUD-assisted households using HUD household and member data files. The sample included all households receiving HUD rental assistance in 2023 that were led by an adult between the ages 18-61 and included at least one child (n = 1,558,711). Participation in HUD rental assistance programs was quantified and characterized through descriptive statistics and multinomial logistic regression.

Results: Eight percent (n = 134,628; 1 in 12) of HUD-assisted households with children included at least one child with a disability. Compared to HUD-assisted households with a child without a disability, HUD-assisted households with a child with a disability had higher odds of participating in a Housing Choice Voucher Program than in Multifamily Housing by a factor of 2.6 and higher odds of participating in Public Housing than Multifamily Housing by a factor of 2.2.

Conclusions: HUD rental assistance programs serve a substantial share of households with children with disabilities, with notable variation in participation by program type. This study provides the most comprehensive national estimates to date of HUD participation among households with children with disabilities, offering a critical foundation for future research.

Background: Limited evidence exists on the sexual health of individuals with severe visual impairment.

Objective: To assess a broad range of sexual health indicators among 15-89-year-old Danes with severe visual impairment.

Methods: Baseline data were sourced from a nationally representative cohort study on sexual health in the Danish population. Participants reporting (N = 631) and not reporting (N = 60,482) severe visual impairment were compared. Binary and polytomous logistic regression analyses provided demographically weighted, confounder-adjusted odds ratios (aORs) with 95 % confidence intervals (CIs) for associations between visual impairment and sexual health outcomes.

Results: Several disparities emerged. Men with visual impairment were less likely to be sexually experienced (aOR: 0.52; CI: 0.30-0.91), to have been sexually active in the past year (aOR: 0.72; CI: 0.51-0.99), to rate their current sex life as good/very good (aOR: 0.74; CI: 0.55-0.99), and to have masturbated in the past year (aOR: 0.74; CI: 0.55-0.99). They were more likely to have had unsafe sex in the past year (aOR: 1.61; CI: 1.13-2.31) and to have experienced sexual assault (aOR: 2.34; CI: 1.17-4.72). Women with visual impairment were more likely to report sexual victimization (aOR: 1.73; CI: 1.23-2.44), same-sex sexual experiences (aOR: 1.83; CI: 1.25-2.68), and identifying as non-heterosexual (aOR: 1.79; CI: 1.24-2.58).

Conclusions: The study underscores significant sexual health challenges among individuals with severe visual impairment, notably victimization (both genders) and unsafe sex (men). Additionally, higher rates of same-sex sexual experiences and non-heterosexual identities were observed among visually impaired women.

Background: People with disabilities experience substantial disparities in perinatal health and outcomes that may be impacted by inequities in health care.

Objective: This study assesses how receipt and content of perinatal care varies by extent of disability.

Method: We analyzed 2019-2021 PRAMS data from 22 sites that included the Washington Group Short Set of Questions (n = 43,567). We examined association of extent of disability (none, some, a lot) with pre-pregnancy, prenatal, and postpartum health care using multivariable Poisson regression to calculate state-adjusted prevalence ratios (PRs) and sociodemographic-adjusted prevalence ratios (aPRs). Among individuals who received each care type, we calculated PRs and aPRs for content of care, including topics pertaining to maternal health, pregnancy prevention, and preparing for a healthy pregnancy.

Results: Compared to those with no difficulty, respondents with some difficulty were less likely to receive pre-pregnancy care from an OB/GYN (PR = 0.93; 95 %CI 0.6, 0.98) or a postpartum checkup (PR = 0.98; 95 %CI 0.98, 0.99); respondents with a lot of difficulty were less likely to receive pre-pregnancy care from an OB/GYN (PR = 0.86; 95 %CI 0.74, 1.00), adequate prenatal care (PR = 0.92; 95 %CI 0.90, 0.95), or a postpartum checkup (PR = 0.94; 95 %CI 0.90, 0.95). Respondents with any level of difficulty were at least as likely as those with no difficulty to receive education on maternal health topics and pregnancy prevention but less likely to receive care addressing desire for children or preparing for a healthy pregnancy.

Conclusions: Disabled women, particularly those with a lot of difficulty, receive differential perinatal health care. Our findings highlight the need for comprehensive and equitable care.