Disability and Health Journal最新文献

{"title":"\"The Scarlet Letter B\": A qualitative study to improve health care provider education for patients who are blind or low-vision.","authors":"Rebecca Fischbein, Rachel Bracken, Raman Bhambra, Omar Hameed, Dominic Congeni, Allyson S Hughes","doi":"10.1016/j.dhjo.2025.101834","DOIUrl":"https://doi.org/10.1016/j.dhjo.2025.101834","url":null,"abstract":"<p><strong>Background: </strong>Individuals who are blind or low-vision face multiple barriers to quality health care, including insufficient training for health care providers and staff. Limited research has examined provider and staff skills and knowledge gaps, attitudinal barriers, or relevant training needs specific to caring for blind or low-vision patients.</p><p><strong>Objective: </strong>In this qualitative study, we sought to understand, from the perspective of blind or low-vision individuals, what needs to be known and improved to better care for this population.</p><p><strong>Methods: </strong>We conducted four structured focus groups with 22 blind or low-vision individuals. Questions assessed general health care impressions, positive and negative health care experiences, and recommendations for training providers.</p><p><strong>Results: </strong>Reflexive thematic analysis was conducted, which identified three overlapping, training-focused themes: 1) disability etiquette and communication, 2) understanding barriers to care, and 3) dismantling ableist stereotypes and misconceptions. The need for health care provider and staff empathy and compassion is emphasized as a central, core theme shared by each of the training-focused themes.</p><p><strong>Conclusion: </strong>Our findings confirm and expand previous calls for improved education regarding the health care needs for patients who are blind or low vision. Most significantly, we draw from recent literature in health professions education to propose training interventions targeted to the training needs identified via thematic analysis. We advocate for educational design and implementation that is community-engaged and centers the patient who is blind or low vision as the educator.</p>","PeriodicalId":49300,"journal":{"name":"Disability and Health Journal","volume":" ","pages":"101834"},"PeriodicalIF":3.7,"publicationDate":"2025-04-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143804531","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":"Unpacking the relationship between autism, sport participation, and adolescent health: A causal mediation analysis.","authors":"Martin O'Flaherty, Jessica Hill, Matthew Bourke, Kathryn Fortnum, George Thomas, Sjaan R Gomersall, John Cairney","doi":"10.1016/j.dhjo.2025.101832","DOIUrl":"https://doi.org/10.1016/j.dhjo.2025.101832","url":null,"abstract":"<p><strong>Background: </strong>Autistic children are less likely to participate in sport than non-autistic children, and sport participation may improve health and health related quality of life. It is therefore possible that sport participation may partially mediate the association between autism and adolescent health and health related quality of life. Sport participation may have distinct effects for autistic and non-autistic children, and these effects may also differ between team and individual sports.</p><p><strong>Objectives: </strong>The study had two objectives. First, to estimate cumulative effects of sport participation (team or individual) between ages 8-15 on adolescent health and health related quality of life and determine whether effects of sport participation differed for autistic children compared to non-autistic children. Second, to determine whether sport participation (team or individual) mediated the relationship between autism and adolescent health and health related quality of life.</p><p><strong>Methods: </strong>Methods for causal mediation analysis were used to analyse data from a representative cohort of Australian children (n = 313 autistic; 6346 non-autistic) between ages 8-15. Sport participation was reported by parents from ages 8-15. Outcomes at age 14-15 included body mass index, the Pediatric Quality of Life Inventory, the Strengths and Difficulties Questionnaire, and the Short Moods and Feelings Questionnaire.</p><p><strong>Results: </strong>Non-autistic children's health benefited from all forms of sport. For autistic children, however, team sport participation was linked to worse mental health and no benefit in physical health. Individual sport improved physical health related quality of life, but not body mass index or mental health for autistic children. The mediation hypothesis was not supported.</p><p><strong>Conclusions: </strong>Our findings suggest that greater efforts are needed to adapt community sport to encourage equitable participation and ensure that participation benefits autistic children's health and health-related quality of life equally.</p>","PeriodicalId":49300,"journal":{"name":"Disability and Health Journal","volume":" ","pages":"101832"},"PeriodicalIF":3.7,"publicationDate":"2025-04-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143812350","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":"Assessing unmet need for dental care from the perspective of adults with disabilities: A mixed methods approach.","authors":"Marissa Andréah Diaz, Elizabeth Geneva Wood, Weili Yuan, Gilbert Gimm, Jae Kennedy","doi":"10.1016/j.dhjo.2025.101835","DOIUrl":"https://doi.org/10.1016/j.dhjo.2025.101835","url":null,"abstract":"<p><strong>Background: </strong>Adults with disabilities face multiple barriers in accessing health care and experience a variety of unmet needs, including dental care. However, few U.S. studies have assessed unmet need for dental care from the perspective of adults with disabilities.</p><p><strong>Objective: </strong>We sought to assess unmet need for dental care services from the perspective of adults with disabilities using a mixed methods approach.</p><p><strong>Methods: </strong>Using individual-level data from the 2022 National Survey on Health and Disability, we conducted a descriptive analysis of participant characteristics, unmet need for dental care, and reasons for unmet need. Using content analysis, we analyzed open-ended text responses from the survey.</p><p><strong>Results: </strong>While participants most commonly cited underinsurance as a barrier to services, they also highlighted lack of accommodation, dental anxiety, and difficulty securing appointments as issues resulting in unmet dental care needs.</p><p><strong>Conclusion: </strong>This study illustrates not only the rate of unmet need for dental care for adults with disabilities, but also the reasons driving this phenomenon. Future research is needed to delve further into the reasons cited by participants, namely dental anxiety and the perception that dental providers are unwilling to serve disabled people, neither of which has been explored in-depth quantitatively or qualitatively.</p>","PeriodicalId":49300,"journal":{"name":"Disability and Health Journal","volume":" ","pages":"101835"},"PeriodicalIF":3.7,"publicationDate":"2025-04-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143796888","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":"Experiences of individuals with severe disabilities using assistive devices: A qualitative study.","authors":"Hye-Young Jang, Daum Chung, Eunmi Oh, Gwi-Ryung Son Hong","doi":"10.1016/j.dhjo.2025.101833","DOIUrl":"https://doi.org/10.1016/j.dhjo.2025.101833","url":null,"abstract":"<p><strong>Background: </strong>Assistive devices positively impact the lives of people with disabilities. However, many individuals face challenges preventing them from fully utilizing these tools, which is an unresolved issue in South Korea.</p><p><strong>Objective: </strong>This study explores the experiences of individuals with severe disabilities regarding the use of assistive devices.</p><p><strong>Methods: </strong>Data were collected from 13 such individuals through individual in-depth interviews from December 2021 to April 2022 and then analyzed using content analysis.</p><p><strong>Results: </strong>Three main categories-\"Assistive devices as catalysts for independent living,\" \"Unmet realities and limitations of assistive devices,\" and \"Hopes for a better future with assistive devices\"-and eight sub-categories related to the participants' experiences were derived. The participants experienced both the positive effects of assistive devices on their independence and social participation, as well as deficiencies in the quality of the devices, service process, and support systems. Additionally, they noted environmental challenges and social constraints.</p><p><strong>Conclusions: </strong>The findings suggest the importance of ensuring the systematic management of device and environmental quality, among other things, and can inform the development of more effective and user-centered assistive technologies based on the experiences of individuals with severe disabilities.</p>","PeriodicalId":49300,"journal":{"name":"Disability and Health Journal","volume":" ","pages":"101833"},"PeriodicalIF":3.7,"publicationDate":"2025-04-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143804641","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 qualitative meta-synthesis of the perinatal healthcare experiences of people with disability.","authors":"Sarah E Harkins, Alexandria L Hahn, Meghan Didier, Caroline Walsh, Veronica Barcelona, Katherine Melton, Maureen George","doi":"10.1016/j.dhjo.2025.101828","DOIUrl":"https://doi.org/10.1016/j.dhjo.2025.101828","url":null,"abstract":"<p><strong>Background: </strong>Significant perinatal health disparities exist between people with and without disability in the United States and Canada. However, less is known about the perinatal healthcare experiences of people with different types of disability in those countries. Understanding this experience is crucial for developing tailored interventions to improve perinatal health outcomes.</p><p><strong>Objective: </strong>To synthesize qualitative studies describing the perinatal healthcare experiences of people with physical, sensory, or cognitive disability in the United States and Canada.</p><p><strong>Methods: </strong>We conducted a qualitative meta-synthesis following Sandelowski and Barroso's methods. Four databases and forward and backward citation searching were used to identify relevant studies in March 2024. Studies were appraised based on their reporting of Guba's essential criteria for trustworthy qualitative research. We coded qualitative findings and synthesized results into themes and subthemes. GRADE-CERQual was used to rate the level of confidence in each subtheme.</p><p><strong>Results: </strong>Twenty-one studies describing the perinatal healthcare experiences of 225 people with disability were the basis of this synthesis. Three themes emerged: (1) Pervasive Ableism, (2) An Uninformed and Unaccommodating Experience, and (3) Resilience in the Face of Ableism.</p><p><strong>Conclusions: </strong>People with different types of disability shared similar perinatal healthcare experiences, including facing stigma, encountering clinicians with limited knowledge of disability and pregnancy, and demonstrating resilience through self-advocacy and support networks. Accessibility barriers and a lack of disability competency among clinicians were specific to each disability type. Future research should prioritize the development of interventions that promote perinatal health equity for people with disability.</p>","PeriodicalId":49300,"journal":{"name":"Disability and Health Journal","volume":" ","pages":"101828"},"PeriodicalIF":3.7,"publicationDate":"2025-03-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143774547","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":"Domains of wheelchair users' socio-emotional experiences: Design insights from a scoping review.","authors":"Mohsen Rasoulivalajoozi, Carmela Cucuzzella, Morteza Farhoudi","doi":"10.1016/j.dhjo.2025.101829","DOIUrl":"https://doi.org/10.1016/j.dhjo.2025.101829","url":null,"abstract":"<p><strong>Background: </strong>Physical accessibility is not the only concern for wheelchair users (WUs); they also face barriers to social presence, such as challenges in social engagement and negative stereotypes. Identifying key domains in the literature that impact their social and emotional experiences is essential to addressing these issues.</p><p><strong>Objective: </strong>This scoping review sought to explore the key domains of WUs' socio-emotional experiences, as a foundation for providing design-oriented insights to enhance their social presence.</p><p><strong>Methods: </strong>A literature search was conducted using the Web of Science, PubMed, Scopus, and PsycINFO databases, along with a manual search of three relevant journals. Articles in English, based on original empirical studies that focused on the socio-emotional experiences of adult WUs (>18), were included.</p><p><strong>Results: </strong>Of the 48 articles included, most were from Canada (n = 11), Sweden (n = 9), the U.S. (n = 7), and the U.K. (n = 6), with limited studies from other countries. Among the six domains explored, Independence & Autonomy (26 %) was the most frequently reported, while Self-Identity & Body Image (9 %) and Social Stigma & Discrimination (5 %) were the least. Three interconnected themes emerged to guide design insights: Theme I - Foundations: Autonomy & Control, Theme II - Connections: Social Participation & Support, and Theme III - Reflection: Self- & Social-Identity.</p><p><strong>Conclusion: </strong>While independence and agency are key concerns, little research has focused on perceptual issues like self- and social-identity, often highlighted in the media. This area can be refined by recognizing the crucial role of design in aesthetically shaping WUs' social representation in public settings.</p>","PeriodicalId":49300,"journal":{"name":"Disability and Health Journal","volume":" ","pages":"101829"},"PeriodicalIF":3.7,"publicationDate":"2025-03-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143755468","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":"Exploring the lived-experience of individuals with a visual impairment regarding their autonomy, using the example of the community pharmacy: A qualitative study.","authors":"Théodora Merenda, Sarah Rharib, Pauline Delannoy, Jennifer Denis, Stéphanie Patris","doi":"10.1016/j.dhjo.2025.101830","DOIUrl":"https://doi.org/10.1016/j.dhjo.2025.101830","url":null,"abstract":"<p><strong>Background: </strong>Visual impairment represents a significant public health concern, affecting a substantial number of individuals on a global scale. It has a profound impact on the daily lives of these individuals, particularly in relation to the administration of their medications and their interactions with community pharmacists.</p><p><strong>Objectives: </strong>The study aimed to (1) examine perceptions, challenges, and needs of individuals living with a visual impairment when engaging with community pharmacists, and (2) enhance pharmacist-patient communication, as well as ensure more accessible and inclusive healthcare for these individuals.</p><p><strong>Methods: </strong>Semi-structured interviews were conducted with 19 French-speaking individuals with a visual impairment in Belgium. The participants were recruited on a voluntary basis and an interview guide was developped based on literature review. Interviews were carried out until theoretical data saturation, recorded, transcribed verbatim, and analyzed in a double-blind fashion using thematic and interpretative phenomenological analyses. Data were organized by NVivo software.</p><p><strong>Results: </strong>Two dimensions were explored in the interviews: psychological and pharmaceutical. From a psychological perspective, the experience of individuals with a visual impairment appears to be linked to their family and social context. The relationship they have with their pharmacist is also important, more specifically the relational aspect and knowledge of visual impairment.</p><p><strong>Conclusion: </strong>Visual impairment is a complex phenomenon that is influenced by a variety of factors. Consequently, adaptation systems are necessary at all levels of the society to provide individuals with a visual impairment with the best living conditions and care. The various elements identified in this qualitative study provide some interesting insights for developing recommendations.</p>","PeriodicalId":49300,"journal":{"name":"Disability and Health Journal","volume":" ","pages":"101830"},"PeriodicalIF":3.7,"publicationDate":"2025-03-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143774485","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":"Is participation in the Supplemental Nutrition Assistance Program associated with physical food security among people aged 16 to 64 with disabilities in the U.S.?","authors":"Debra L Brucker, Hyun Ju Kim, Brittany E Potvin","doi":"10.1016/j.dhjo.2025.101831","DOIUrl":"https://doi.org/10.1016/j.dhjo.2025.101831","url":null,"abstract":"<p><strong>Background: </strong>The nation's largest nutrition assistance program (Supplemental Nutrition Assistance Program (SNAP)) was designed to improve economic food security. People with disabilities may experience interactions of functional limitations with environmental conditions that limit access to food, regardless of income level or nutrition assistance receipt.</p><p><strong>Objective: </strong>Test whether participation in SNAP is associated with physical food security (PFS), a new measure that quantifies the extent that individual physical functioning limitations such as limitations in lifting or walking reduce access to food.</p><p><strong>Methods: </strong>Using data from the 2013-2018 National Health and Nutrition Survey (NHANES), we estimate the proportion of people aged 16 to 64 with disabilities in the U.S. who experience low or very low PFS and use logit regressions to test whether participation in SNAP is associated with level of PFS for working-age people with disabilities.</p><p><strong>Results: </strong>In testing a variety of fully adjusted logit regression models of PFS, including models that included interaction terms of disability and SNAP receipt and models that used alternative specifications of disability, we did not find evidence that SNAP receipt was associated with or served as a moderator of PFS for people with disabilities.</p><p><strong>Conclusions: </strong>These findings highlight the importance of collaboration among disability, food, and nutrition policy and practice to identify home and community-based ways to improve PFS.</p>","PeriodicalId":49300,"journal":{"name":"Disability and Health Journal","volume":" ","pages":"101831"},"PeriodicalIF":3.7,"publicationDate":"2025-03-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143765579","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":"Lived experiences of patients, families and caregivers affected by inherited retinal diseases: A qualitative systematic review.","authors":"Qin Xiang Ng, Ansel Shao Pin Tang, Kai En Chan, Hwei Wuen Chan, Natasha Howard, Gerald Choon Huat Koh","doi":"10.1016/j.dhjo.2025.101826","DOIUrl":"https://doi.org/10.1016/j.dhjo.2025.101826","url":null,"abstract":"<p><strong>Background: </strong>Inherited retinal diseases (IRDs) are a heterogeneous group of genetic disorders, and a leading cause of vision impairment or blindness, affecting millions worldwide. Despite advances in understanding its phenotype, the physical and psychological impacts of IRDs on patients and their families and caregivers remain underexplored.</p><p><strong>Objective: </strong>This review thus aimed to summarize the existing literature in this area.</p><p><strong>Methods: </strong>Following PRISMA guidelines and using search terms such as \"inherited retinal disease\", \"psychological impact\", \"social impact\", and \"qualitative research\", a systematic search was conducted across PubMed Central, EMBASE, Scopus, and PsycINFO databases up to February 29, 2024, for qualitative studies on the impact of IRDs. The findings were then synthesized narratively to provide a cohesive interpretation.</p><p><strong>Results: </strong>A total of 20 studies involving 474 participants across six countries (Australia, Belgium, Italy, Sweden, the UK, and the US) were included. Key themes included the significant impact on daily living and independence, work and professional life, coping strategies and resilience, and the emotional burden on families and caregivers. Genetic testing and its implications (reproductive decisions and insurance discrimination) also emerged as an area of concern. IRDs profoundly affect patients and their families and caregivers, influencing daily life, well-being, and societal participation.</p><p><strong>Conclusions: </strong>Despite the challenges, resilience and adaptability are prominent, and the findings emphasize the need for comprehensive care that includes psychological support, work adjustments and policies that address the needs of this population. Understanding these quality-of-life issues and areas of unmet need is relevant for healthcare providers, policymakers, and researchers globally.</p>","PeriodicalId":49300,"journal":{"name":"Disability and Health Journal","volume":" ","pages":"101826"},"PeriodicalIF":3.7,"publicationDate":"2025-03-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143732752","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":"Additive associations of number of chronic health conditions and disabilities with flourishing among adolescents in the U.S.","authors":"Xihe Zhu, Yahan Liang, Justin A Haegele","doi":"10.1016/j.dhjo.2025.101827","DOIUrl":"https://doi.org/10.1016/j.dhjo.2025.101827","url":null,"abstract":"<p><strong>Background: </strong>Flourishing, also known as thriving, has been recognized as an important indicator of behavioral and social well-being in adolescents. While the association of individual chronic health conditions and disabilities with adolescent flourishing has been explored, the cumulative association of multiple conditions remains underexamined.</p><p><strong>Objective: </strong>The purpose of this study was to examine the associations between the number of chronic conditions or disabilities and flourishing among adolescents in the U.S.</p><p><strong>Methods: </strong>We utilized nationally representative data from the 2019-2020 National Survey of Children's Health (NSCH), using a cross-sectional design to assess flourishing in adolescents aged 12-17 years (n = 29,518). Logistic regression analyses were conducted to evaluate the association of the number of chronic health conditions and disabilities with flourishing.</p><p><strong>Results: </strong>We found that the presence of chronic health conditions and disabilities that adolescents have is negatively associated with the odds of their flourishing. Compared to those with two or more chronic conditions or disabilities, adolescents with no conditions or disabilities had almost four times greater odds of flourishing (aOR = 3.94), and those with one condition or disability had about three times (aOR = 2.97) greater odds.</p><p><strong>Conclusions: </strong>The odds of flourishing diminish markedly with multiple chronic conditions or disabilities. These findings highlight the critical need for tailored interventions to support adolescents with multiple conditions, enhancing their potential for future health and success.</p>","PeriodicalId":49300,"journal":{"name":"Disability and Health Journal","volume":" ","pages":"101827"},"PeriodicalIF":3.7,"publicationDate":"2025-03-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143722083","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}