Disability and Health Journal最新文献

{"title":"Exploring the physical, psychological, and social benefits of adaptive outdoor cycling in persons with stroke using a mixed methods approach.","authors":"Alexandra L Terrill, Anne V Kirby, Nicole Nagata, Steven Bell, Steven Edgley","doi":"10.1016/j.dhjo.2024.101737","DOIUrl":"https://doi.org/10.1016/j.dhjo.2024.101737","url":null,"abstract":"<p><strong>Background: </strong>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.</p><p><strong>Objective: </strong>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.</p><p><strong>Methods: </strong>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.</p><p><strong>Results: </strong>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.</p><p><strong>Conclusions: </strong>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.</p>","PeriodicalId":49300,"journal":{"name":"Disability and Health Journal","volume":" ","pages":"101737"},"PeriodicalIF":3.7,"publicationDate":"2024-11-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142644817","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"A year of disability health equity milestones: Why disability data is still needed.","authors":"Scott D Landes, Bonnielin K Swenor","doi":"10.1016/j.dhjo.2024.101723","DOIUrl":"https://doi.org/10.1016/j.dhjo.2024.101723","url":null,"abstract":"<p><p>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.</p>","PeriodicalId":49300,"journal":{"name":"Disability and Health Journal","volume":" ","pages":"101723"},"PeriodicalIF":3.7,"publicationDate":"2024-10-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142548552","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"The intersection of systemic lupus erythematosus with social and occupational environments among black adults: A qualitative study.","authors":"Deena Aboul-Hassan, Johari Summerville, Bhaavna Yalavarthi, Nikki Farahani, Christine Yu, Lillian Z Xiao, Sia Rajgarhia, Daniel J Clauw, J Michelle Kahlenberg, Melissa DeJonckheere, Rachel S Bergmans","doi":"10.1016/j.dhjo.2024.101713","DOIUrl":"https://doi.org/10.1016/j.dhjo.2024.101713","url":null,"abstract":"<p><strong>Background: </strong>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.</p><p><strong>Objective: </strong>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.</p><p><strong>Methods: </strong>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.</p><p><strong>Results: </strong>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.</p><p><strong>Conclusions: </strong>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.</p>","PeriodicalId":49300,"journal":{"name":"Disability and Health Journal","volume":" ","pages":"101713"},"PeriodicalIF":3.7,"publicationDate":"2024-10-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142523462","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Patient-provider relationships and long COVID: A cross-sectional survey about impact on quality of life.","authors":"Jeanine P D Guidry, Linnea I Laestadius, Candace W Burton, Carrie A Miller, Paul B Perrin, Celeste Campos-Castillo, Thomas Chelimsky, Raouf Gharbo, Kellie E Carlyle","doi":"10.1016/j.dhjo.2024.101722","DOIUrl":"https://doi.org/10.1016/j.dhjo.2024.101722","url":null,"abstract":"<p><strong>Background: </strong>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.</p><p><strong>Objective: </strong>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.</p><p><strong>Methods: </strong>This study carried out an online survey among U.S. adult with Long COVID (N = 792).</p><p><strong>Results: </strong>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).</p><p><strong>Conclusions: </strong>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.</p>","PeriodicalId":49300,"journal":{"name":"Disability and Health Journal","volume":" ","pages":"101722"},"PeriodicalIF":3.7,"publicationDate":"2024-10-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142548553","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"\"Too few, too far away, for what is paid\": Consumer voices about the personal assistance worker crisis.","authors":"Catherine Ipsen, Rayna Sage, Krys Standley","doi":"10.1016/j.dhjo.2024.101721","DOIUrl":"https://doi.org/10.1016/j.dhjo.2024.101721","url":null,"abstract":"<p><strong>Background: </strong>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.</p><p><strong>Objective: </strong>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.</p><p><strong>Methods: </strong>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.\"</p><p><strong>Results: </strong>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.</p><p><strong>Conclusions: </strong>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.</p>","PeriodicalId":49300,"journal":{"name":"Disability and Health Journal","volume":" ","pages":"101721"},"PeriodicalIF":3.7,"publicationDate":"2024-10-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142511461","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Providing accessible health information for people with disability in a public health crisis: A qualitative study of the experiences of Australian accessible information provider organizations during the COVID-19 pandemic.","authors":"Ariella Meltzer, Emma Barnes, Ayah Wehbe","doi":"10.1016/j.dhjo.2024.101720","DOIUrl":"https://doi.org/10.1016/j.dhjo.2024.101720","url":null,"abstract":"<p><strong>Background: </strong>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.</p><p><strong>Objective: </strong>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.</p><p><strong>Methods: </strong>In-depth interviews were conducted with 17 accessible information provider organizations and one other stakeholder in Australia, and thematically analyzed.</p><p><strong>Results: </strong>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.</p><p><strong>Conclusion: </strong>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.</p>","PeriodicalId":49300,"journal":{"name":"Disability and Health Journal","volume":" ","pages":"101720"},"PeriodicalIF":3.7,"publicationDate":"2024-10-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142511462","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Qualitative analysis of Portuguese-language YouTube videos about autism spectrum disorders.","authors":"Isabella Paixão, Leticia Fleig Dal Forno, Leonardo Pestillo de Oliveira, Lucas França Garcia","doi":"10.1016/j.dhjo.2024.101719","DOIUrl":"https://doi.org/10.1016/j.dhjo.2024.101719","url":null,"abstract":"<p><strong>Background: </strong>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.</p><p><strong>Methods: </strong>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.</p><p><strong>Results: </strong>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.</p><p><strong>Conclusion: </strong>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.</p>","PeriodicalId":49300,"journal":{"name":"Disability and Health Journal","volume":" ","pages":"101719"},"PeriodicalIF":3.7,"publicationDate":"2024-10-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142478906","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Parents' perspectives on conversations about prognosis and an assessment of prognostic information available online: A mixed-methods study.","authors":"Akira Gokoolparsadh, Meg Bourne, Alison McEwen, David J Amor, Erin Turbitt","doi":"10.1016/j.dhjo.2024.101718","DOIUrl":"https://doi.org/10.1016/j.dhjo.2024.101718","url":null,"abstract":"<p><strong>Background: </strong>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.</p><p><strong>Objective: </strong>(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.</p><p><strong>Methods: </strong>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.</p><p><strong>Results: </strong>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.</p><p><strong>Conclusions: </strong>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.</p>","PeriodicalId":49300,"journal":{"name":"Disability and Health Journal","volume":" ","pages":"101718"},"PeriodicalIF":3.7,"publicationDate":"2024-10-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142478905","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"One-year employment outcome prediction after traumatic brain injury: A CENTER-TBI study.","authors":"Helena Van Deynse, Wilfried Cools, Viktor-Jan De Deken, Bart Depreitere, Ives Hubloue, Ellen Tisseghem, Koen Putman","doi":"10.1016/j.dhjo.2024.101716","DOIUrl":"https://doi.org/10.1016/j.dhjo.2024.101716","url":null,"abstract":"<p><strong>Background: </strong>Traumatic brain injury (TBI) can come with long term consequences for functional outcome that can complicate return to work.</p><p><strong>Objectives: </strong>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?</p><p><strong>Methods: </strong>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.</p><p><strong>Results: </strong>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 %.</p><p><strong>Conclusion: </strong>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.</p>","PeriodicalId":49300,"journal":{"name":"Disability and Health Journal","volume":" ","pages":"101716"},"PeriodicalIF":3.7,"publicationDate":"2024-10-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142559212","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"The effects of poor housing conditions on depressive symptoms in persons with disabilities: Do neighborhood resources and residence type matter?","authors":"Gum-Ryeong Park, Saud Haseeb, Eun Ha Namkung","doi":"10.1016/j.dhjo.2024.101712","DOIUrl":"https://doi.org/10.1016/j.dhjo.2024.101712","url":null,"abstract":"<p><strong>Background: </strong>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.</p><p><strong>Objective: </strong>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.</p><p><strong>Methods: </strong>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.</p><p><strong>Results: </strong>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.</p><p><strong>Conclusions: </strong>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.</p>","PeriodicalId":49300,"journal":{"name":"Disability and Health Journal","volume":" ","pages":"101712"},"PeriodicalIF":3.7,"publicationDate":"2024-10-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142394667","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}