Disability and Health Journal最新文献

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.

Background: In the digital age, social media platforms such as YouTube have become significant channels for disseminating health information, including content related to autism spectrum disorder (ASD). The quality and reliability of this information, especially when produced by healthcare professionals, are crucial for public health education and promotion. This study aims the content of Portuguese-language videos about the treatment of ASD on YouTube, produced by healthcare providers from 2019 to 2023, assessing their quality and alignment with evidence-based practices.

Methods: A qualitative exploratory descriptive approach was used, with content analysis based on Bardin's method. A total of 41 videos were selected using keywords related to ASD. Transcriptions were analyzed for discussions on treatment approaches, best practices, and professional recommendations according to DSM-V and ICD-10 guidelines. The quality of information was assessed using the DISCERN questionnaire.

Results: The analysis revealed significant variability in the quality of the information. Videos were categorized into four quality groups based on DISCERN scores: good (n = 6), moderate (n = 11), poor (n = 20), and very poor (n = 4). Good quality videos had the highest engagement metrics and overall quality scores. Common themes identified included defining and understanding ASD, ABA interventions and strategies, family and social impact, skills development, and challenges and solutions.

Conclusion: While some videos provided accurate, evidence-based information, a substantial portion did not meet minimum quality criteria. This highlights the need for improved mechanisms to ensure the dissemination of reliable health information on social media platforms.

Background: Conversations about prognosis for genetic neurodevelopmental conditions are becoming more frequent; however, there is a lack of evidence and guidance on how to approach these conversations and frame the information being provided.

Objective: (1) To understand how parents perceive prognostic conversations with healthcare professionals and their preferences for these conversations, (2) To investigate the framing of prognostic information found online.

Methods: This was a mixed-methods study, comprising of (1) a thematic analysis of interviews with parents and (2) a quantification of prognostic information available on the internet that portrayed a negative message. The strategy to classify the framing of prognostic information was defined iteratively, informed by the information found online.

Results: We interviewed 32 parents from across Australia. Parents had a child with a genetic neurodevelopmental condition, such as Fragile X syndrome (28 %), 22q11.2 deletion syndrome (16 %) or Angelman syndrome (16 %). Parents reported their preference to discuss their child's potential strengths as well as challenges regarding prognosis. They reported that conversations about prognosis often focused on the child's possible deficits and that online information they encountered was similarly framed negatively. Our analysis of online information confirmed parents accounts: 95.3 % was coded as negative, while only 4.7 % was positive/neutral.

Conclusions: Our data provide evidence of an over-emphasis of deficit-framed prognostic information about genetic neurodevelopmental conditions. The initial exposure to negative information may adversely affect parents' psychological well-being and expectations, which future research could address. Health professionals could consider strengths-based framing of prognostic information gained from current and emerging technologies when returning results to families. Findings from this study can help to inform health communication practices as well as online content development.

Background: Traumatic brain injury (TBI) can come with long term consequences for functional outcome that can complicate return to work.

Objectives: This study aims to make accurate patient-specific predictions on one-year return to work after TBI using machine learning algorithms. Within this process, specific research questions were defined: ¹ How can we make accurate predictions on employment outcome, and does this require follow-up data beyond hospitalization? ² Which predictors are required to make accurate predictions? ³ Are predictions accurate enough for use in clinical practice?

Methods: This study used the core CENTER-TBI observational cohort dataset, collected across 18 European countries between 2014 and 2017. Hospitalized patients with sufficient follow-up data were selected for the current analysis (N = 586). Data regarding hospital stay and follow-up until three months post-injury were used to predict return to work after one year. Three distinct algorithms were used to predict employment outcomes: elastic net logistic regression, random forest and gradient boosting. Finally, a reduced model and corresponding ROC-curve was created.

Results: Full models without follow-up achieved an area under the curve (AUC) of about 81 %, which increased up to 88 % with follow-up data. A reduced model with five predictors achieved similar results with an AUC of 90 %.

Conclusion: The addition of three-month follow-up data causes a notable increase in model performance. The reduced model - containing Glasgow Outcome Scale Extended, pre-injury job class, pre-injury employment status, length of stay and age - matched the predictive performance of the full models. Accurate predictions on post-TBI vocational outcomes contribute to realistic prognosis and goal setting, targeting the right interventions to the right patients.

Background: Poor housing conditions pose significant risks to the health of persons with disabilities. However, it is not well understood how and for whom the relationship between housing conditions and health is more pronounced.

Objective: This study aims to estimate the association between poor housing conditions and psychological health, and to explore whether residential characteristics, such as residence type and proximity to community resources, mitigate these risks for community-dwelling adults with disabilities.

Methods: Data were obtained from three waves of the Disability and Life Dynamic Panel (n = 5,058), a nationally representative study of individuals with disabilities in Korea. Our sample were limited to those aged 20 or older for the purpose of this study. Individual-level fixed effect analyses were conducted to assess the longitudinal association between poor housing conditions and depressive symptoms, accounting for individual-level heterogeneity. We also tested the moderating effects of the residential characteristics, including proximity to community resources and residence type.

Results: Poor housing conditions, characterized by structural unsafety and inadequate ventilation, lighting, and noise protection, were associated with increased depressive symptoms among adults with disabilities. The negative impact of poor housing conditions on depressive symptoms was less pronounced for those living close to community services or in apartment complexes where housing conditions are professionally managed.

Conclusions: The study indicates that the quality of housing and neighborhood environments affect the psychological health of adults with disabilities. These findings support for the need for place-based interventions aimed at improving the residential environments of community-dwelling adults with disabilities.

Background: The importance of undertaking physical activity for functioning of patients with multiple sclerosis (MS) has been repeatedly highlighted. However, the research on the role of physical activity in shaping the quality of life of patients with different disease duration is scarce.

Objective: The aim of this study was to identify the mediating role of physical activity in the relationship between health locus of control (HLoC) and health-related quality of life in MS patients with varying disease duration.

Methods: The study included 339 patients with MS from rehabilitation centers. The Multiple Sclerosis Impact Scale (MSIS-29) was used to measure health-related quality of life, physical activity was assessed by the Godin Leisure Time Exercise Questionnaire (GLTEQ) and the Health Locus of Control Questionnaire was used to measure HLoC.

Results: Physical activity has been shown to be a mediator in the relationship between intrinsic HLoC and health-related quality of life particularly in patients with longer disease duration. Intrinsic HLoC was positively associated with engaging in physical activity, which in turn was positively associated with the physical component of quality of life in patients with longer (indirect effect: β = -0.077, p < 0.05) and moderate (β = -0.040, p < 0.05) duration of illness.

Conclusion: The results highlight the importance of psychological resources for undertaking quality-of-life-related physical activity by MS patients with long disease duration. Particularly important here is the internal HLoC, which promotes physical activity that increases the chance of a high quality of life.

Background: Transportation can help improve the health, quality of life, and community integration of people with intellectual and developmental disabilities (IDD). Yet, transportation is one of people with IDD's most common unmet needs.

Objective: The aim of this study was to examine if, and, how, states provide non-medical transportation to people with IDD in their Medicaid HCBS programs.

Methods: Using content analysis and descriptive statistics, this study analyzed fiscal year (FY) 2021 Medicaid HCBS 1915(c) waivers for people with IDD from across the nation to examine how they allocated transportation.

Results: In FY 2021, all 44 states and the District of Columbia with HCBS waivers for people with IDD provided transportation services. Transportation was included either by providing a stand-alone service that exclusively provided transportation, or by being embedded within another service. Transportation was embedded within 896 different HCBS services for people with IDD, most commonly within residential habilitation services (26.70 %), supported employment services (19.44 %), and day habilitation (18.44 %). Thirty-three states (73.33 %) also provided 145 different stand-alone transportation services in their programs for people with IDD, to increase community integration and help people gain access to waiver services. A total of $781.78 million of spending was projected for stand-alone transportation services for 261,109 people with IDD (30.32 % of waiver recipients).

Conclusions: HCBS waivers are an important resource for providing transportation for people with IDD. However, significant variation in how states do so may result in disparities or unmet needs.