Disability and Health Journal最新文献

Background: While the impact of developmental disabilities (DD) on the entire family is increasingly recognized, the experiences of typically developing (TD) siblings often remain overlooked. Recently, an understanding of siblings' experiences has been developed through qualitative studies.

Objective: This review aims to synthesize existing qualitative evidence regarding the experiences of TD siblings of individuals with DD.

Methods: A systematic search across four databases (PubMed, CINAHL, PsycINFO, and Web of Science) identified studies reporting empirical qualitative data on the experiences of TD siblings of adolescents and young adults with DD, including English studies from 2014 to 2023. A quality appraisal was performed using the Critical Appraisal Skill Programme (CASP) checklist. The data were synthesized using thematic synthesis.

Results: Nine studies met the inclusion criteria. Six key themes and 13 subthemes were identified from the included articles. These themes included (i) encountered difficulties, (ii) intrapersonal response, (iii) interpersonal interaction, (iv) challenging family dynamics, (v) strategies and support, and (vi) accepting and adapting to my reality.

Conclusions: This review synthesizes qualitative evidence on the experiences of TD siblings, highlighting how their situation shapes their lives. The findings suggest that TD siblings of individuals with DD experience difficulty due to their sibling's disability. These experiences influence various aspects of their lives, including personal, school/work, and family dynamics, ultimately affecting TD siblings' adaptation processes. Our findings emphasize the need for targeted interventions to support the psychological well-being of TD siblings of individuals with DD.

Background: Low earnings are associated with household insecurity. Direct Support Professionals (DSPs) provide support for people with intellectual and developmental disabilities, typically for wages close to state minimums, and may experience insecurity.

Objective: The purpose of the study was to evaluate the prevalence of food and housing insecurity among DSPs.

Methods: We conducted a statewide, cross-sectional survey of DSPs in New York State (2022-2023). Measures included detailed questions about food and housing insecurity. We used chi-square analyses and logistic regressions to examine relationships between insecurity and demographic characteristics as proxies for social determinants of health. A total of 4503 DSPs responded to the survey. The analytic sample contained 2766 respondents with complete data for all relevant variables.

Results: Overall, 62.6 % experienced food and/or housing insecurity, with over half of those respondents experiencing both. Insecurity was highest among DSPs with a disability (76.2 %), DSPs of color (75.7 %), and those with lower income (72.4 %), but over 50 % of DSPs across demographic groups experienced insecurity.

Conclusions: The widespread insecurity this study demonstrates is an occupational hazard that reduces worker welfare. At the macro-level, household insecurity is a critical threat to the stability of the care and support delivery system. The human services sector is projected to grow rapidly in the future. If growth continues along low wage lines, it implies an equally rapid expansion of worker insecurity. Government action to raise pay and interventions that enhance food and housing security are needed to support workers in the care delivery system for people with intellectual and developmental disabilities.

Background: Transgender and gender diverse (TGD) adults experience disability at twice the rate of cisgender (non-TGD) adults in the US. TGD people of color and low-income TGD people experience intersecting discrimination that may compound chronic conditions and disability. To our knowledge, no research has focused on chronic conditions among TGD Medicare beneficiaries with disabilities.

Objective: We compared the probability of chronic conditions among TGD adults with disability-based eligibility for Medicare across race, ethnicity, and dual Medicaid-Medicare enrollment.

Methods: We used cross-sectional Medicare enrollment and claims data between 2008 and 2017 for fee-for-service beneficiaries eligible based on disability. We applied a claims-based algorithm to identify TGD beneficiaries. We assessed differences in beneficiaries' age-adjusted predicted probability of chronic conditions across race, ethnicity, and dual eligibility.

Results: Dual-eligible TGD beneficiaries (N = 8041) had a higher predicted probability of nine out of ten health condition categories relative to Medicare-only TGD beneficiaries (N = 6237). For each race and ethnicity category, the most prevalent condition categories were mental health, cardiovascular conditions, and non-cardiovascular-related physical health conditions. Hispanic and non-Hispanic Black TGD beneficiaries had over two and three times the probability of infectious disease as non-Hispanic White TGD beneficiaries, respectively.

Conclusions: TGD adults with disabilities have high rates of chronic conditions with additional disparities by race, ethnicity, and dual eligibility status. Our findings offer potential directions for mixed-methods and intervention research aimed at identifying and ameliorating the drivers of these disparities among TGD Medicare beneficiaries with disabilities.

Background: Exergames may be a feasible alternative to in-person exercise that is adaptable for adults with Down Syndrome (DS).

Objective: The purpose of this study was to conduct a 12-week pilot trial to assess the feasibility of exergames for adults with DS.

Methods: Adults with DS were provided Ring Fit Adventure™ which uses a resistance ring and body weight to perform cardiovascular and strength exercises. Participants were instructed to play Ring Fit Adventure™ for 120 min/week and attend 30-min weekly virtual coaching sessions where a health educator encouraged gameplay via goal setting, helped troubleshoot technological issues, and collected self-reported minutes of gameplay. Intervention outcomes included attendance, adherence to weekly gameplay goals, retention, safety, and exercise intensity captured via heart rate and indirect calorimetry.

Results: Twenty adults with DS (age 23.5 years, 89 % non-Hispanic white, 61 % female) enrolled and 19 participants completed the trial. Participants attended 93 % of coaching sessions and 90 % met the weekly gameplay goals. The average gameplay duration was 39 min/session and 123 min/week at 67.3 % of the participants' estimated maximum heart rate. Both the average heart rate during the intervention and metabolic equivalents (3.4 ± 1.0) during the indirect calorimetry assessment were suggestive of moderate intensity exercise.

Conclusions: Attendance and adherence to the weekly gameplay goal were high among adults with DS who were able to reach and sustain moderate intensity during the exergame sessions. Exergaming represents a home-based option for accumulating minutes of moderate-to-vigorous physical activity that is feasible for and acceptable to adults with DS.

Background: Individuals with intellectual disabilities (ID) often experience poorer diet quality and lower physical fitness levels as they transition from adolescence to adulthood.

Objective: The purpose of this study was to assess the initial feasibility and efficacy of Chef-ID, a 12-week intervention designed to improve cooking skills and physical function in young adults with ID.

Methods: Young adults with ID attended weekly group sessions which provided hands-on cooking skills, nutrition education, and exercise. Participants were also asked to attend monthly, virtual, goal setting sessions. Feasibility outcomes included attendance, retention, and safety. Preliminary efficacy outcomes included cooking skills, lower body muscle strength, grip strength, aerobic capacity, and body weight. Paired t-tests were used to assess the differences in cooking skills, strength measures, aerobic capacity, and weight after the 12-week intervention.

Results: Study retention was 95 %, attendance exceeded 85 % for all sessions, and no serious adverse events were reported. The number of cooking skills participants could do independently (p = 0.005), the number of cooking skills requiring only a verbal prompt (p = 0.01) and lower body strength (p = 0.004) significantly improved across the 12-week intervention. The number of cooking skills participants had no exposure to (p = 0.01) and weight (p = 0.036) significantly decreased across the intervention. No significant changes were observed for upper body strength or aerobic capacity.

Conclusions: The Chef-ID intervention was feasible with desirable initial effects on cooking skill independence, exposure to cooking skills, lower body strength, and weight. The Chef-ID intervention holds promise in enhancing cooking skills and physical function among young adults with ID.

Trial registration number: Clinicaltrials.gov, NCT05385016.

Background: Natural disasters pose global challenges, with their frequency and severity increasing annually, impacting communities worldwide. People with disabilities are disproportionately vulnerable to experiencing adverse mental health outcomes in the aftermath of such events, yet this critical issue remains inadequately studied.

Objective: This paper examines the impact of natural disasters on people with disabilities, focusing on their displacement patterns and mental well-being, to enhance our understanding of health vulnerabilities and the specific needs in emergency response.

Methods: Data from the nationally representative 2024 Household Pulse Survey were analyzed to assess the duration of displacement and the severity of mental distress among individuals with and without disabilities following natural disasters. Generalized Estimating Equations were employed to predict post-disaster outcomes, adjusting for demographic characteristics, socioeconomic factors, and household structure.

Results: Individuals with vision disabilities (CI: 0.024-0.137) and those with multiple disabilities (CI: 0.020-0.068) experienced significantly longer periods of displacement compared to non-disabled people. Additionally, people with cognitive disabilities reported significantly higher levels of mental distress than their non-disabled counterparts (CI: 0.149-0.236).

Conclusion: Findings from this study demonstrate the need for specialized disaster response protocols that prioritize accessibility, mental health support, and targeted assistance for different disability types. Future emergency preparedness policies should incorporate disability-specific considerations, including enhanced evacuation planning, accessible mental health services, and strengthened community support systems. Disaster response frameworks must evolve to address these documented vulnerabilities, ensuring equitable support for all community members during and after natural disasters.

Background: People who are Black and have physical disabilities likely face a dual burden of risk for maternal mortality due to enduring systemic oppression rooted in racism and ableism.

Objective: To investigate maternal mortality risks among Black birthing individuals with physical disabilities in the United States and assess the potential compounding effect when these marginalized identities intersect.

Methods: We conducted a historical cohort study using the 2004-2021 Healthcare Cost and Utilization Project Nationwide Inpatient Sample. The study included 8,263,997 delivery hospitalizations. We used modified Poisson regression to estimate unadjusted and adjusted relative risks (RR) of maternal mortality by race and physical disability status. We calculated the Relative Excess Risk due to Interaction (RERI) and Attributable Proportion (AP) to assess additive interaction between Black race and physical disability status.

Results: After adjusting for covariates, compared to their White birthing individuals, their Black peers experienced about 2.5 times (RR = 1.48,95%CI:2.08-2.96) the risk of maternal mortality. Compared to birthing individuals without physical disabilities, those with physical disabilities experienced nearly 11 times the (RR = 10.72,95%CI:8.15-14.10) risk of maternal mortality. Our adjusted additive interaction analysis revealed a significant super-additive effect (RERI = 11.3; AP = 0.47); suggesting that the combined effect of having both marginalized identities was greater than the sum of the individual effects of each identity.

Conclusions: Our findings provide evidence for substantial inequities in maternal mortality by Black race and physical disability status, with evidence of a compounding effect when these marginalized identities intersect. These results underscore the urgent need for intersectional approaches in maternal health interventions and policies.

Background: Training in research ethics supports community research partners with developmental disabilities to take on additional research responsibilities. We worked with an academic-community partnership to develop an accessible research ethics training tailored to the roles of community research partners with developmental disabilities that leads to certification: Research Ethics for All.

Objective: We evaluated the social validity of the educational activities and certification process.

Methods: We shared the training via a webinar and gathered feedback from attendees using polls (138 attendees; 92 respondents). In addition, four research teams composed of academic researchers and community research partners with developmental disabilities completed Research Ethics for All. Teams provided feedback on a series of surveys as they prepared to use the training, completed each of the 5 learning units, and after completing the training. We calculated descriptive statistics and used a pragmatic content analysis approach to analyze open-ended data.

Results: Teams were satisfied with the training and felt it supported learning. They endorsed the videos and learning activities but thought videos should be shorter. 68.5% of webinar attendees felt that Research Ethics for All covers essential information in social-behavioral research ethics. Several IRBs have approved the use of Research Ethics for All.

Conclusions: Research Ethics for All is an acceptable research ethics training that may support community research partners with developmental disabilities to take on important research responsibilities in social-behavioral research.

Background: The intersection of rurality, disability, self-reliance values, and utilization rates of mental health services (MHS) is under-researched.

Objective: To better understand the differences between unmet need and no perceived need for MHS between noncore, micropolitan, and metropolitan adults with disabilities.

Methods: We conducted logistic regression analyses of the 2022 National Survey on Health and Disability (NSHD) to identify associations between demographic characteristics and odds of reporting unmet need for MHS or no perceived need for MHS.

Results: Living in a noncore area, being male, lower educational attainment, older age, vision disability, and ambulatory disability were significantly associated with increased odds of reporting no perceived need for MHS. Being LGBTQIA+, poor transportation access, and cognitive disability were significantly associated with decreased odds of reporting no perceived need for MHS. Cognitive disability, cohabitation, and poor transportation access were significantly associated with increased odds of reporting unmet need for MHS. Conversely, being male, having some college and/or a two-year degree were significantly associated with decreased odds of reporting unmet need for MHS. There were not significant differences in unmet need for MHS across rural indicators.

Conclusion: No perceived need of MHS is an underexplored factor among rural and urban adults with disabilities. Solutions include policies to expand MHS access, tailored public health outreach, and provider communication training.

Background: While intellectual disability is associated with higher mortality rates due to circulatory diseases, it is unclear whether intellectual disability is associated with higher risk of myocardial infarction (MI) and stroke than the general population.

Objectives: We aimed to analyze the risk of cardiovascular diseases (CVD), specifically myocardial infarction (MI) and ischemic stroke, and death due to circulatory diseases in individuals with disability.

Methods: This retrospective cohort study used data from the National Disability Registration System linked to the Korean National Health Insurance Service database. Individuals who underwent national health examinations in 2009 were followed until 2020. Cox-proportional hazard analyses were performed to estimate the risk of CVD, MI, ischemic stroke, and circulatory disease deaths with adjustment for covariates.

Results: A total of 3642 individuals with intellectual disability (mean [SD] age 39.1 [12.6], 28.8 % female) and 3,889,794 individuals without intellectual disability (mean [SD] age 47.1 [13.9], 45.6 % female) were included. Compared to those without intellectual disability, those with intellectual disability had higher risk of CVD (adjusted hazard ratio [aHR] 1.71, 95 % confidence interval [CI] 1.45-2.02), ischemic stroke (aHR 2.21, 95 % CI 1.81-2.69), and death due to circulatory diseases (aHR 4.20, 95 % CI 3.24-5.45), and a non-significant risk for MI (aHR 1.24, 95 % CI 0.95-1.63) after full adjustment for covariates.

Conclusions: Individuals with intellectual disability were at increased risk of CVD, in particular ischemic stroke, and death due to circulatory diseases. Healthcare professionals should be aware of increased CVD risk in individuals with intellectual disability.