Disability and Health Journal最新文献

Background: Metabolic syndrome (MetS) is a cluster of cardiovascular disease (CVD) risk factors. Accurate diagnosis, in spinal cord injury (SCI) patients, is vital for effective CVD prevention.

Objective: This study aimed to identify factors related to MetS prevalence by comparing MetS prevalence trends in SCI and the general population (GP) and to examine differences in MetS prevalence in patients with SCI according to the cutoff reference value for abdominal obesity.

Methods: This retrospective cohort study analyzed data from the National Health Insurance Corporation from 2015 to 2019. MetS was defined using the National Cholesterol Education Program criteria with an adjusted waist circumference of 81.3 cm for patients with SCI. Data were collected on age, gender, smoking, alcohol consumption, BMI, waist circumference, lipid profiles, blood pressure, fasting glucose, and socioeconomic status. Each year, SCI patients (n = 3,140, n = 3,201, n = 3,503, n = 1,590, n = 1544) were matched with GP individuals (m = 31,400, m = 32,040, m = 35,030, m = 15,900, m = 15,440).

Results: Over 5 years, MetS prevalence increased in both groups, consistently higher in the SCI group. Older age and lower income were risk factors in both groups (p < 0.05). Smoking and alcohol intake were significant only in the GP (p < 0.0001). Using the adjusted obesity criterion, MetS prevalence was 1.4 times higher in SCI patients than in the GP (p < 0.0001).

Conclusions: Exclusively relying on GP criteria for diagnosing MetS in patients with SCI may lead to an underestimation of MetS prevalence and overlooked opportunities for CVD prevention. Therefore, the development of diagnostic and preventive strategies for MetS considering SCI characteristics is needed.

Background: People with disabilities (PWD) face health disparities due to barriers that limit their access to essential healthcare services. During the COVID-19 pandemic, health disparities among PWD increased as stay-at-home mandates and other safety measures interrupted access to healthcare and social services. Community-based and consumer-driven Centers for Independent Living (CILs) attempt to reduce disparities faced by PWD by providing information and referrals, peer counseling, and advocacy.

Objective: Despite funding to utilize public health workers to respond to the COVID-19 pandemic and prepare for future crises, the literature currently lacks examinations of the impact of the COVID-19 pandemic on CIL consumers and staff.

Methods: This qualitative study employed a directed content analysis to evaluate 6 consumer focus groups (N = 35) and 4 staff focus groups (N = 14).

Results: Through data analysis, staff themes included Resource Gaps, COVID-19 Concerns, Impact on Independence, Impact on Health, Work Demand Changes, and Work/Life Balance. Among consumers, themes of CIL Service Experiences, CIL Benefits, COVID-19 Concerns of Using CILs, COVID-19 Barriers to Using CILs, Impact on Independence, Impact on Health, Resource Gaps, and Recommendations for CILs were present.

Conclusions: This study demonstrates the diverse experiences among PWD during the COVID-19 pandemic. However, there are similarities in the impact of environmental factors on the severity of disability experienced by consumers and staff. This study highlights the benefits of independent community living resource centers and the need to better understand the experiences of PWD to prepare for future pandemics.

Background: Family aggregation of disability is not uncommon. Research on children with disabilities has often overlooked a specific group facing health disparities: children with disabilities of parents with disabilities.

Objective: To determine whether children with disabilities, whose parents also have disabilities, experience limited access to health care.

Methods: This is a dynamic cohort study. The data used in this study were the 2017-2021 Taiwan's National Disability Registry and the National Health Insurance claims data. All children were matched to their biological fathers and mothers using a unique anonymous identification number to identify the disability status of the children and their parents and the receipt of health care services by the children.

Results: In 2021, a total of 2 834 870 pairs of children and parents were identified, of whom 53,419 were children with disabilities. Of these, 5188 had at least one parent with disabilities. Compared with children whose parents did not have disabilities, those whose parents both had disabilities had 1.71 fewer outpatient visits per year (P = .013). Compared with children whose parents had no disabilities, those whose parents had disabilities had 5.0 and 4.2 fewer general outpatient visits at birth (P < .001) and at the age of 2 years (P < .001), respectively. The magnitude of this effect decreased as the children's age increased.

Conclusions: Children with disabilities whose parents also have disabilities may underutilize health care even in settings such as Taiwan, where universal health coverage is available. Standard health programs do not eliminate health care utilization disparities for such children.

Background: Beyond the Stigma (BTS) was an exhibition of stories about staff with physical and hidden impairments at the Royal Orthopaedic Hospital NHS Foundation Trust, Birmingham, UK.

Objective: Evaluative research aimed to examine BTS's long-term impact on participants who publicly shared lived experiences of disability in their hospital workplace. It also sought to discover how arts-based interventions can effectively identify and promote nuanced disability understandings and the wellbeing of disabled people working in healthcare.

Methods: Interpretative Phenomenological Analysis (IPA) interviews were conducted with six hospital staff. Transcripts were analyzed in depth.

Results: Three superordinate themes emerged from the data, Process of Hesitancy and Comfort, Perceptions of Impact and Contribution, and Journeying with Disability Understandings. These captured personal narratives of how it felt to disclose impairment and perceptions of the project's impact. Long-term benefits of taking part in BTS were identified as increased self-confidence, openness, self-acceptance, and empowerment. Shifts in participants' personal disability views pointed to improved quality of life inside and outside the workplace through new awareness of diverse and shared experiences, new ease with disability definitions, language, self-identity, and community participation.

Conclusion: Study findings exposed levels of risk, resilience, and compromise associated with sharing personal experiences of disability, and how these can be managed effectively in the workplace. BTS offers a model for health promotion and community participation across disabled and non-disabled communities that can be repeated and adapted to support employment strategies, shift understandings, and promote notions of disability gain and disability pride across healthcare settings.

Background: Adults with cerebral palsy (CP) face various functional limitations and comorbidities, that prevent them from participating fully in social life. Disability models suggest that an environment not tailored to their needs could partly explain the link between functional limitations and participation restrictions. However, there is still insufficient knowledge about how the environment hinders participation.

Objective: To investigate the mediating role of environmental inadequacy in the relationship between functional limitations and participation restrictions in young adults with CP.

Methods: Cross-sectional study, which included 310 young adults with CP, aged 22-27 years at interview (2018-2020) and recruited in well-defined geographical areas in France, Germany, Italy, Portugal and Sweden. Environmental inadequacy was assessed using the EAEQ and participation restrictions using the QYPP-YA. A theorical model was tested with a partial least squares structural equation model.

Results: Functional limitations had a significant direct effect on participation restrictions (β = 0.62, p < 0.001). A small part of the total effect was mediated by the "inadequacy of services, systems and policies" environmental latent variable (β = 0.10, p < 0.001). "Inadequacy of support and relationships" and "inadequacy of attitudes" environments demonstrated no mediating effect. Unexpectedly, a higher "inadequacy of products and technology" environmental score appeared to reduce participation restrictions (β = -0.10, p = 0.025).

Conclusions: The environment considered as suggested by the ICF had only a minimal mediating effect in our study. However, public health policies must give priority to improvements at the macro-environmental level, particularly in terms of availability and access to the "services, systems and policies".

Background: Women with disabilities experience higher rates of intimate partner violence (IPV). Evidence suggests this violence often manifests in more subtle and severe forms over longer periods of time. There is limited evidence on this association in the Pacific Islands region, despite facing one of the highest global prevalences of IPV.

Objective: Examine the prevalence of disability and the association between disability and types of IPV experience among women in rural Samoa as part of the EVE Project.

Methods: This study analysed cross-sectional data collected with nine communities in rural Samoa between December 2022 and February 2023. Enumerators collected data with 707 women on tablets using REDCap. IPV was measured using the standardised Demographic and Health Survey (DHS) domestic violence methodology. Disability was assessed using the Washington Group questions. Logistic regression was conducted to examine the association between disability and experiences of IPV (physical, sexual, emotional and economic violence) among women.

Results: Having a disability was significantly associated with increased IPV experience among women in this study. When controlling for age and education, women with severe disability were significantly more likely to experience sexual (OR 4.31; p = 0.01) and emotional (OR 2.87; p = 0.02) IPV, when compared to women with no disability.

Conclusions: Our findings point towards a greater vulnerability of women with disabilities to IPV, and particularly sexual and emotional IPV, in rural Samoa. Qualitative research in partnership with women with disabilities is essential to inform the design of measurement tools and prevention programmes that are grounded in the context-specific experiences and needs of all women with disabilities.

Background: Stroke is a leading cause of disability world-wide. Community-based adaptive recreation programs may offer a way to enhance quality of life in persons with stroke.

Objective: Explore the association between community-based adaptive outdoor cycling program participation and physical, psychological, and social outcomes in persons with stroke using both quantitative and qualitative data collection.

Methods: Mixed methods design, using prospective longitudinal quantitative data collection during a 16-week adaptive outdoor cycling program (Part 1) and a semi-structured interview/focus group (Part 2). Part 1 included baseline, 8- and 16-weeks assessments of physical, psychological, and social outcomes. Repeated measures analyses of variance (ANOVA) were used to examine within-group changes and effect sizes were calculated. Part 2's transcriptions were coded for physical, psychological, and social outcomes.

Results: 30 individuals post-stroke (ages 25-72) were enrolled in Part 1 of the study. ANOVA results showed statistically significant changes in all three areas: physical (resting heart rate, 10-m walk test), psychological (well-being), and social (satisfaction with social roles) outcomes, all with large effect sizes. All other outcomes showed changes in the expected direction but did not reach statistical significance. Findings from qualitative analyses explained and expanded upon quantitative findings.

Conclusions: The results highlight the importance of exploring the influence of adaptive recreation on not only physical but psychological and social outcomes. Due to the exploratory design of this pilot, future research is warranted.

Three milestone disability health equity related decisions occurred between September 2023 and May 2024. Though each is to be celebrated in its own right, the continued failure to collect and/or limitations with disability data block the path to achieving disability health equity in the US.

Background: Black people have disproportionately high morbidity and mortality due to systemic lupus erythematosus (SLE). Features of social and occupational environments can protect against poor health outcomes.

Objective: We aimed to characterize how SLE intersects with interpersonal relationships and employment among Black adults to inform tailored care approaches and public policies that could alleviate racial inequities in SLE.

Methods: We used a qualitative, interpretive description approach that involved semi-structured interviews with Black adults who had SLE. The interview guide included questions about SLE diagnosis, impacts on day-to-day life, and symptom management. We analyzed the de-identified transcripts using inductive, thematic analysis with input from representatives of the study population. Our theme development focused on how SLE (i.e., symptoms, severity, management) intersected with interpersonal relationships and employment.

Results: This study included 30 interviews (97 % female, age range = 18-65 years). Among participants, 30 % were not working due to unemployment or disability and 23 % reported a lack of emotional support. Our analysis resulted in three main themes: 1) The bi-directional relationship between employment and SLE; 2) The positive and negative effects of connecting with other people who have SLE; and 3) The moderating role of relationships with family and friends, and the impact on self-identity.

Conclusions: This study describes features of social and occupational environments that influence SLE management and wellbeing. Our results highlight directions for further study that could identify and address how systemic racism affects race-based inequities in SLE.

Background: In the United States (U.S.), it is estimated that 17.6 % of adults have experienced Long COVID, a condition where symptoms newly develop and linger after initial COVID-19 infection. Long COVID is associated with significantly reduced quality of life (QoL), and patient-provider relationships have been shown to influence QoL for patients in general.

Objective: The objective for this study was to better understand the role of patient-provider relationships in shaping QoL among U.S. adults with Long COVID.

Methods: This study carried out an online survey among U.S. adult with Long COVID (N = 792).

Results: Respondents with at least a bachelor's degree reported higher QoL, and older respondents were more likely to report lower QoL; trust in providers was a significant predictor of higher QoL, while dismissal of Long COVID symptoms was associated with lower QoL (all p < .05).

Conclusions: Healthcare providers should be aware of the importance of trust in the relationship with their Long COVID patients and the impact this may have on patients' QoL. Researchers and policy makers should include an increasing focus on training for providers who treat patients with Long COVID in order to strengthen patient-provider relationships.