Disability and Health Journal最新文献

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.

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: 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.

Background: The growing gap between demand and supply of personal assistance service (PAS) workers presents a significant burden to those who use services. The intensity and duration of hardship is growing, and consumer voices need to be heard and incorporated into the national dialogue.

Objective: This paper explores how PAS worker shortages manifest themselves in the daily lives of people with disabilities using or needing PAS services in the United States.

Methods: We used thematic coding of qualitative data from the 2022 National Survey on Health and Disability. Respondents (n = 330) provided open-ended responses to the prompt "Briefly explain the types of problems or issues you have had finding PAS or support workers."

Results: Three themes emerged regarding consumer perspectives and experiences with worker shortages (1) low pay, few benefits, and undervalued work, (2) demanding working conditions and logistics, and (3) low quality workers. In combination, these themes informed a fourth theme (4) impacts for PAS consumers characterized by substandard care and additional stress and workload for those who direct their own care.

Conclusions: As a society, we have taken steps to increase opportunities for community living and created policies to uphold choice and independence for people with disabilities. In the absence of an adequate workforce to support these policies, however, we convey an empty promise. Without tangible steps to resolve these problems at the policy level, such as improved worker pay and protections, hope for resolution to these issues remains elusive.

Background: During the COVID-19 pandemic, people with disability had a right and an acute need to access accessible COVID-19 information, in formats such as sign language, Braille, large print and Easy Read/English. Yet such information was not always provided and many people with disability were without sufficient accessible information.

Objective: This paper explores the experiences of Australian accessible information provider organizations of producing accessible information during the pandemic. The intent is to understand why insufficient accessible information reached people with disability.

Methods: In-depth interviews were conducted with 17 accessible information provider organizations and one other stakeholder in Australia, and thematically analyzed.

Results: The findings show that accessible information provider organizations felt an immense depth and breadth of responsibility for providing accessible information to people with disability during the pandemic. However, they were hampered by constantly changing information; workforce challenges; and a lack of financial, logistic and partnership assistance. Other notable difficulties included having no source of clear/accurate information to translate to accessible formats and not having medical/health expertise themselves.

Conclusion: The findings have implications for better preparation for accessible information access in future public health crises. There should be greater funding and logistic support for accessible information provider organizations. Provision of clear/accurate information and subject matter checks of accessible products would be helpful. Responsibility for this should be scoped into existing outreach, education and communications roles - for example, in local health services, general practice clinics and government health departments.