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First steps toward pain classification among adults with cerebral palsy: A modified Delphi study. 成人脑瘫患者疼痛分类的第一步:一项修正德尔菲研究。
IF 3.3 2区 医学
Disability and Health Journal Pub Date : 2026-04-28 DOI: 10.1016/j.dhjo.2026.102080
Mary E Gannotti, David J Kohns, Garey H Noritz, Duncan O Wyeth, Elizabeth J Lucas, Elisabeth B Bates, Hana Azizi, Cristina A Sarmiento, Deborah E Thorpe, Stephen A Nichols, Jodi M Kreschmer, Susan L Koller, Lee Y Schuh, Elizabeth R Boyer, Mary M Schmidt, Linda E Krach, Karen Pleasant, Eric M Chin, Edward A Hurvitz, Amy F Bailes
{"title":"First steps toward pain classification among adults with cerebral palsy: A modified Delphi study.","authors":"Mary E Gannotti, David J Kohns, Garey H Noritz, Duncan O Wyeth, Elizabeth J Lucas, Elisabeth B Bates, Hana Azizi, Cristina A Sarmiento, Deborah E Thorpe, Stephen A Nichols, Jodi M Kreschmer, Susan L Koller, Lee Y Schuh, Elizabeth R Boyer, Mary M Schmidt, Linda E Krach, Karen Pleasant, Eric M Chin, Edward A Hurvitz, Amy F Bailes","doi":"10.1016/j.dhjo.2026.102080","DOIUrl":"https://doi.org/10.1016/j.dhjo.2026.102080","url":null,"abstract":"<p><strong>Background: </strong>Adults with cerebral palsy (CP) commonly experience chronic pain that is often misclassified, contributing to suboptimal treatment. For adults that can self-report, use of patient-reported measures to assess pain or light phenotype assessment, is a feasible approach for routine outpatient clinics, but consensus on relevant domains and items is lacking.</p><p><strong>Objective: </strong>To establish expert consensus on key domains and corresponding items for light phenotype pain assessment during routine outpatient visits for adults with CP.</p><p><strong>Methods: </strong>We conducted a nine-month modified Delphi study involving 21 stakeholders-including clinicians, pain experts, and individuals with lived experience affiliated with the Cerebral Palsy Research Network (CPRN). Through nine meetings and ten iterative surveys, we used the ACCORD guideline to ensure rigorous consensus development. Agreement was defined as ≥75% endorsement. The process included three stages: domain identification, domain selection, and item evaluation and selection. Survey formats included ratings, rankings, yes/no confirmations, and free text responses.</p><p><strong>Results: </strong>The expert panel identified and prioritized four domains essential for light phenotype assessment: pain location, onset, quality, and intensity. Four standardized items were selected for each domain, including the Michigan Body Map for location, a three-month duration item for onset, descriptive terms for quality, and a 0-10 numeric rating for intensity. The four selected items exceeded the 75% consensus threshold (90-100% agreement).</p><p><strong>Conclusions: </strong>This modified Delphi study achieved consensus on a pragmatic and stakeholder-informed framework for pain assessment in adults with CP. Identified domains and items will be implemented and evaluated in future quality improvement initiatives.</p>","PeriodicalId":49300,"journal":{"name":"Disability and Health Journal","volume":" ","pages":"102080"},"PeriodicalIF":3.3,"publicationDate":"2026-04-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147845076","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}
引用次数: 0
Mitigating race, ethnicity, and nativity differences in pregnancy outcomes: A cultural-psychosocial approach for women with disabilities. 减轻种族、民族和出生差异对妊娠结局的影响:残疾妇女的文化-社会心理方法。
IF 3.3 2区 医学
Disability and Health Journal Pub Date : 2026-04-27 DOI: 10.1016/j.dhjo.2026.102081
Mohamad Saripudin, Amirul Hazmi Hamdan, Nur Asiah
{"title":"Mitigating race, ethnicity, and nativity differences in pregnancy outcomes: A cultural-psychosocial approach for women with disabilities.","authors":"Mohamad Saripudin, Amirul Hazmi Hamdan, Nur Asiah","doi":"10.1016/j.dhjo.2026.102081","DOIUrl":"https://doi.org/10.1016/j.dhjo.2026.102081","url":null,"abstract":"","PeriodicalId":49300,"journal":{"name":"Disability and Health Journal","volume":" ","pages":"102081"},"PeriodicalIF":3.3,"publicationDate":"2026-04-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147787150","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}
引用次数: 0
The impact of mHealth on physical activity in wheelchair users: A scoping review. 移动健康对轮椅使用者身体活动的影响:范围综述
IF 3.3 2区 医学
Disability and Health Journal Pub Date : 2026-04-22 DOI: 10.1016/j.dhjo.2026.102076
Brooke E Starkoff, Haley Patrick, Lauren Lieberman
{"title":"The impact of mHealth on physical activity in wheelchair users: A scoping review.","authors":"Brooke E Starkoff, Haley Patrick, Lauren Lieberman","doi":"10.1016/j.dhjo.2026.102076","DOIUrl":"https://doi.org/10.1016/j.dhjo.2026.102076","url":null,"abstract":"<p><strong>Background: </strong>Wheelchair users (WCUs) encounter numerous barriers to engaging in physical activity (PA), resulting in elevated risks for chronic health conditions associated with inactivity. Mobile health (mHealth) technologies offer a promising avenue to support PA engagement by enhancing accessibility, motivation, and independence.</p><p><strong>Objective: </strong>This scoping review aims to examine the current evidence on the effectiveness of mHealth interventions in promoting PA among WCUs to identify gaps in the literature to inform future research and development.</p><p><strong>Methods: </strong>A total of eleven studies were included, encompassing a range of mHealth tools such as mobile applications, telehealth platforms, and wearable devices. Studies were analyzed for intervention features and outcomes related to PA.</p><p><strong>Results: </strong>Findings indicate that mHealth interventions can enhance PA behaviors in WCUs, particularly when incorporating features such as real-time feedback, gamification, and personalized goal setting. Approximately 64% of the studies reported improvements in PA outcomes. However, only two of the articles demonstrated significant changes, potentially attributed to small sample sizes and the nature of the studies.</p><p><strong>Conclusions: </strong>Overall, mHealth holds promise as a tool to reduce health disparities in WCUs by improving access to and motivation for PA. However, the current evidence base is limited and heterogeneous. Future research should prioritize the personalization and motivational factors of mHealth tools to better address the unique needs of this population.</p>","PeriodicalId":49300,"journal":{"name":"Disability and Health Journal","volume":" ","pages":"102076"},"PeriodicalIF":3.3,"publicationDate":"2026-04-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147787088","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}
引用次数: 0
Social determinants of health and aging outcomes in people aging with disability: Findings from the health and retirement study 2006-2020. 残疾老年人健康和老龄化结果的社会决定因素:2006-2020年健康和退休研究的结果。
IF 3.3 2区 医学
Disability and Health Journal Pub Date : 2026-04-22 DOI: 10.1016/j.dhjo.2026.102077
Seeun Park, Beth Fields, Lisa Bratzke
{"title":"Social determinants of health and aging outcomes in people aging with disability: Findings from the health and retirement study 2006-2020.","authors":"Seeun Park, Beth Fields, Lisa Bratzke","doi":"10.1016/j.dhjo.2026.102077","DOIUrl":"https://doi.org/10.1016/j.dhjo.2026.102077","url":null,"abstract":"<p><strong>Background: </strong>Social determinants of health (SDOH) significantly contribute to health outcomes and the aging process. Although substantial research has investigated the associations between SDOH and aging in the general population, their associations with aging-related outcomes among people aging with disability remain understudied.</p><p><strong>Objective: </strong>To examine the associations between SDOH and two dimensions of aging, phenotypic and functional.</p><p><strong>Methods: </strong>An observational study was conducted using data from the 2006-2020 waves of the Health and Retirement Study. People aging with disability were defined as individuals who reported impairments that began before age 45 and persisted for at least five years. SDOH were categorized based on the Healthy People 2030 framework. Phenotypic aging was measured by metabolic dysfunction risk score, and functional aging was measured by limitations in activities of daily living and instrumental activities of daily living. Hierarchical linear mixed models and Poisson generalized linear mixed-effects models were employed.</p><p><strong>Results: </strong>A total of 1,872 individuals were included. Race/ethnicity and health insurance status were significantly associated with both phenotypic and functional aging. Higher educational attainment and active social participation were protective, whereas experiences of food insecurity and discrimination were associated with poorer aging outcomes.</p><p><strong>Conclusions: </strong>Interventions addressing SDOH, particularly those that enhance social integration and reduce experience of discrimination, may help promote more equitable aging-related health outcomes in this population. These findings provide actionable insights for the development of disability-inclusive aging policies and programs.</p>","PeriodicalId":49300,"journal":{"name":"Disability and Health Journal","volume":" ","pages":"102077"},"PeriodicalIF":3.3,"publicationDate":"2026-04-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147787128","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}
引用次数: 0
Housing and need for personal assistance in relation to hand function: a cross-sectional study of 2304 Swedish adults with cerebral palsy. 住房和个人援助需求与手部功能的关系:2304名瑞典脑瘫成年人的横断面研究
IF 3.3 2区 医学
Disability and Health Journal Pub Date : 2026-04-09 DOI: 10.1016/j.dhjo.2026.102075
Katina Pettersson, Jenny Hedberg-Graff, Anna Lindgren, Evgenia Manousaki, Erika Cloodt, Elisabet Rodby-Bousquet
{"title":"Housing and need for personal assistance in relation to hand function: a cross-sectional study of 2304 Swedish adults with cerebral palsy.","authors":"Katina Pettersson, Jenny Hedberg-Graff, Anna Lindgren, Evgenia Manousaki, Erika Cloodt, Elisabet Rodby-Bousquet","doi":"10.1016/j.dhjo.2026.102075","DOIUrl":"https://doi.org/10.1016/j.dhjo.2026.102075","url":null,"abstract":"<p><strong>Background: </strong>Less adults with cerebral palsy (CP) lives independently, compared to adults without disabilities. Access to personal assistance may help overcome barriers to independent living. Also, little is known about hand function in adults with CP, and the role of hand function in achieving independent living remains unexplored.</p><p><strong>Objective: </strong>To explore the associations between housing and personal assistance in adults with CP, relative to their hand function, age and sex.</p><p><strong>Methods: </strong>We conducted a cross-sectional registry-based study of 2304 adults with CP, aged 20-64 years old, from the Swedish CP Follow-up Program and Quality Registry. Logistic regression models were used to estimate odds ratios (ORs).</p><p><strong>Results: </strong>Almost half (48%) of the adults with CP lived independently, and 35% lived with their parents. Independent living was strongly associated with hand function, age and access to personal assistance. The probability of independent living decreased with increasing MACS levels. The odds for independent living increased with access to personal assistance (OR 13.6, 95% CI 9.5-19.6), age (OR 1.09, 95% CI 1.08-1.10), and was higher in women (OR 1.3, 95% CI 1.0-1.5) than men. In total, 995 (43%) adults received personal assistance. The probability for assistance increased successively with MACS levels to MACS V (OR 5.31, 95% CI 4.79-6.96).</p><p><strong>Conclusions: </strong>Hand function and access to personal assistance are key predictors of independent living in adults with CP. Promoting hand function and ensuring adequate assistance are essential for improving autonomy and quality of life in adults with CP.</p>","PeriodicalId":49300,"journal":{"name":"Disability and Health Journal","volume":" ","pages":"102075"},"PeriodicalIF":3.3,"publicationDate":"2026-04-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147678154","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}
引用次数: 0
Vertical and horizontal equity in support for children with disabilities: A cross-sectional analysis of Australia's national disability insurance scheme. 支持残疾儿童的纵向和横向公平:澳大利亚国家残疾保险计划的横断面分析。
IF 3.3 2区 医学
Disability and Health Journal Pub Date : 2026-04-03 DOI: 10.1016/j.dhjo.2026.102073
Martin O'Flaherty, Jessica Hill, Jennifer Smith-Merry
{"title":"Vertical and horizontal equity in support for children with disabilities: A cross-sectional analysis of Australia's national disability insurance scheme.","authors":"Martin O'Flaherty, Jessica Hill, Jennifer Smith-Merry","doi":"10.1016/j.dhjo.2026.102073","DOIUrl":"https://doi.org/10.1016/j.dhjo.2026.102073","url":null,"abstract":"<p><strong>Background: </strong>Children with disabilities face persistent disadvantages in health, participation, and development. In Australia, the National Disability Insurance Scheme (NDIS) is a central funding mechanism for disability support. Equity is an explicit principle of the NDIS, yet concerns remain about whether access and experiences are equitable.</p><p><strong>Objectives: </strong>This study examines equity in three outcomes of NDIS support for children with disabilities: (1) whether the child has a NDIS plan, (2) the level of plan funding, and (3) parental satisfaction with NDIS supports. We assess these outcomes through the lens of vertical and horizontal equity.</p><p><strong>Methods: </strong>Data come from the 2024 Better Support for Kids with Disabilities survey (N = 688 parents of children aged 2-17 years with disabilities). Logistic regression was used to model NDIS participation, ordinal logistic regression to model plan value, and linear regression to model satisfaction.</p><p><strong>Results: </strong>Children with greater functional limitations were more likely to have a NDIS plan and to receive higher funding, indicating partial vertical equity. However, parents of children with greater functional limitations reported lower satisfaction. Horizontal equity was largely supported for the NDIS plan and funding outcomes, with few systematic disparities after accounting for functional limitations. Parents of older children, with fewer financial resources, and families including adults with disabilities reported lower satisfaction.</p><p><strong>Conclusions: </strong>The NDIS appropriately directs greater resources toward children with higher needs, but inequities persist in satisfaction and experiences of support. Addressing disparities in navigation and service quality is essential to achieving equitable outcomes for all children with disabilities.</p>","PeriodicalId":49300,"journal":{"name":"Disability and Health Journal","volume":" ","pages":"102073"},"PeriodicalIF":3.3,"publicationDate":"2026-04-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147640474","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}
引用次数: 0
Nutritional challenges in para-athletes: A scoping review of current knowledge. 残疾人运动员的营养挑战:当前知识的范围审查。
IF 3.3 2区 医学
Disability and Health Journal Pub Date : 2026-03-26 DOI: 10.1016/j.dhjo.2026.102072
Daniele Conte, Annalisa Di Nucci, Giuliana De Maio, Maria Parpinel
{"title":"Nutritional challenges in para-athletes: A scoping review of current knowledge.","authors":"Daniele Conte, Annalisa Di Nucci, Giuliana De Maio, Maria Parpinel","doi":"10.1016/j.dhjo.2026.102072","DOIUrl":"https://doi.org/10.1016/j.dhjo.2026.102072","url":null,"abstract":"<p><strong>Background: </strong>Para-athletes face unique nutritional challenges arising from impairment-specific physiological and metabolic characteristics, along with environmental and economic barriers influencing food access and meal preparation. Despite the rapid growth of parasport, evidence guiding nutritional practice in this population remains limited.</p><p><strong>Objective: </strong>This scoping review systematically mapped the literature on dietary intake and supplement use among para-athletes, identifying key nutritional challenges and research gaps across impairment types, sports, and competition levels.</p><p><strong>Methods: </strong>Following the Joanna Briggs Institute and PRISMA-ScR frameworks, five databases were searched. Studies including para-athletes of any impairment, sport, or competitive level were eligible. Data were synthesized across seven domains: macronutrient and fiber intake, micronutrient intake, supplement use, hydration status, alcohol consumption, low energy availability, and dietary habits. Dietary intake was assessed against reference standards. Methodological quality assessment of the included studies was also performed with appropriate tools.</p><p><strong>Results: </strong>Forty-seven studies were included. Across impairment groups, carbohydrate and fiber intakes were often below recommendations, while protein intake was generally adequate but insufficient in some female athletes. Vitamin D, calcium, magnesium, and iron inadequacies were common, alongside elevated sodium and B vitamin intakes. Supplement use ranged from 0% to 91%, dominated by vitamin/mineral, creatine, and omega-3 products. Evidence on hydration, alcohol use, low energy availability, and dietary habits was scarce but indicated potential health risks.</p><p><strong>Conclusions: </strong>Para-athletes face distinct and recurring nutritional challenges that impact sport performance and long-term health. Addressing these gaps through impairment-specific research and integrated nutrition care is essential to optimize performance and health in parasport.</p>","PeriodicalId":49300,"journal":{"name":"Disability and Health Journal","volume":" ","pages":"102072"},"PeriodicalIF":3.3,"publicationDate":"2026-03-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147595931","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}
引用次数: 0
Sport as a resource for psychological well-being for people with motor disabilities: A systematic review. 运动作为运动障碍者心理健康的资源:一项系统综述。
IF 3.3 2区 医学
Disability and Health Journal Pub Date : 2026-03-25 DOI: 10.1016/j.dhjo.2026.102070
Alberto Di Dio, Graziella Chiara Prezzavento, Alberto Sardella, Noemi Maria Vitale, Eleonora Uccelli, Idria Verduzzo, Ines Lanzafame, Maria C Quattropani, Pasquale Caponnetto, Vittorio Lenzo
{"title":"Sport as a resource for psychological well-being for people with motor disabilities: A systematic review.","authors":"Alberto Di Dio, Graziella Chiara Prezzavento, Alberto Sardella, Noemi Maria Vitale, Eleonora Uccelli, Idria Verduzzo, Ines Lanzafame, Maria C Quattropani, Pasquale Caponnetto, Vittorio Lenzo","doi":"10.1016/j.dhjo.2026.102070","DOIUrl":"https://doi.org/10.1016/j.dhjo.2026.102070","url":null,"abstract":"<p><strong>Background: </strong>Participation in sport is widely recognized as a crucial factor in overall well-being, especially for individuals with motor disabilities. The role of sports in promoting social support, mental health, resilience and self-efficacy among individuals with disabilities warrants further investigation.</p><p><strong>Objective: </strong>The aim of this systematic review is to examine the relationship between sports participation and psychological well-being outcomes in adults with motor disability.</p><p><strong>Methods: </strong>Following PRISMA 2020 guidelines we conducted a Systematic Review across PubMed, Scopus, Web of Science and PsycNET. Outcomes included psychological well-being and mental health, quality of life, self-efficacy, resilience, self-esteem, motivation, mood, disability acceptance, social support, perceived social competence, and body-sexual esteem.</p><p><strong>Results: </strong>Of 10,806 initially identified records, 27 studies met the inclusion criteria. Results indicate sports participation is associated with improved psychological well-being (40% higher in competitive athletes; p < 0.0001; d ≥ 1.3), increased self-efficacy (P = 0.001, mean 69.5 ± 12.5 vs 62.0 ± 11.5 in non-athletes), higher resilience (r = 0.28; p = 0.004), and better social support in athletes with motor disabilities (β = 0.25; p < 0.01). Sports facilitated disability acceptance and improved social support, motivation, and mood regulation. Athletes showed varying quality of life perceptions, suggesting sports participation may serve as a mechanism for psychological adaptation and empowerment.</p><p><strong>Conclusions: </strong>This systematic review underscores the multifaceted benefits associated with sports participation among individuals with motor disabilities, highlighting its role in enhancing psychological well-being. The findings emphasize the necessity of comprehending these factors to inform the development of evidence-based policies and targeted interventions aimed at promoting social inclusion and optimizing the quality of life for individuals with disabilities through sports. PROSPERO REGISTERED NUMBER: https://www.crd.york.ac.uk/PROSPERO/view/CRD42025638993.</p>","PeriodicalId":49300,"journal":{"name":"Disability and Health Journal","volume":" ","pages":"102070"},"PeriodicalIF":3.3,"publicationDate":"2026-03-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147582001","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}
引用次数: 0
Unmet needs and quality of life in first-stroke patients: The mediating effects of activities of daily living, depression, and social support. 首次中风患者未满足的需求与生活质量:日常生活活动、抑郁和社会支持的中介作用
IF 3.3 2区 医学
Disability and Health Journal Pub Date : 2026-03-19 DOI: 10.1016/j.dhjo.2026.102071
Chang Gao, Fanling Li, Yan Qu, Xiaohong Hu, Wenxuan Ding, Xiaomei Li, Jingjun Zhang
{"title":"Unmet needs and quality of life in first-stroke patients: The mediating effects of activities of daily living, depression, and social support.","authors":"Chang Gao, Fanling Li, Yan Qu, Xiaohong Hu, Wenxuan Ding, Xiaomei Li, Jingjun Zhang","doi":"10.1016/j.dhjo.2026.102071","DOIUrl":"https://doi.org/10.1016/j.dhjo.2026.102071","url":null,"abstract":"<p><strong>Background: </strong>Stroke is a primary cause of disability on a global scale. The resultant functional impairments consequent to stroke give rise to a range of unmet needs among patients, especially those experiencing their first stroke. The unmet needs of patients may have a significant negative impact on their quality of life (QoL). However, the mechanisms underlying this relationship remain poorly understood.</p><p><strong>Objective: </strong>Examine the mediating effects of activities of daily living (ADL), depression, and social support on the relationship between unmet needs and QoL in first-stroke patients.</p><p><strong>Methods: </strong>A convenience sample of 400 patients with first-ever stroke was recruited. Data were collected using the Longer-term Unmet Needs after Stroke monitoring tool, the Barthel Index, the Patient Health Questionnaire-9, the Social Support Rating Scale, and the Stroke-Specific Quality of Life Scale. A parallel mediation analysis was conducted using Model 4 of the SPSS PROCESS macro.</p><p><strong>Results: </strong>The results showed that unmet needs were negatively correlated with QoL. The mediation analysis revealed a significant direct effect of unmet needs on QoL, as well as indirect effects through ADL and depression. Social support did not show a significant mediating effect.</p><p><strong>Conclusion: </strong>Unmet needs affect QoL both directly and indirectly through ADL and depression. These findings underscore the importance of routine assessment and targeted management of unmet needs during post-stroke care. Interventions aimed at enhancing physical functioning and alleviating depression may be effective strategies to improve QoL in this population.</p>","PeriodicalId":49300,"journal":{"name":"Disability and Health Journal","volume":" ","pages":"102071"},"PeriodicalIF":3.3,"publicationDate":"2026-03-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147494402","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}
引用次数: 0
Factors associated with social participation among children with fragile X syndrome. 脆性X染色体综合征儿童社会参与的相关因素
IF 3.3 2区 医学
Disability and Health Journal Pub Date : 2026-03-11 DOI: 10.1016/j.dhjo.2026.102069
Maria G Gonzalez, April D Summers, Lisa D Wiggins, Marc A Schweizer, Angela M Thompson-Paul, Sarah C Tinker
{"title":"Factors associated with social participation among children with fragile X syndrome.","authors":"Maria G Gonzalez, April D Summers, Lisa D Wiggins, Marc A Schweizer, Angela M Thompson-Paul, Sarah C Tinker","doi":"10.1016/j.dhjo.2026.102069","DOIUrl":"https://doi.org/10.1016/j.dhjo.2026.102069","url":null,"abstract":"<p><strong>Background: </strong>Social participation may increase quality of life for children with disabilities. However, few studies have explored social participation among children with fragile X syndrome (FXS).</p><p><strong>Objectives: </strong>The objectives of this analysis were to describe social participation among children with FXS, associations with demographic and clinical characteristics, and caregiver-reported barriers to social participation.</p><p><strong>Methods: </strong>Children with FXS aged 5-17 years were identified using data collected 2011-2021 in the Fragile X Online Registry With Accessible Research Database. Caregivers reported on types of social activities the child was involved in and specific barriers to social participation. Chi-square tests of independence were used to compare distributions by sex and modified Poisson regression was used to estimate unadjusted and adjusted prevalence ratios (aPRs) and 95% confidence intervals (CI).</p><p><strong>Results: </strong>Among children with FXS (n = 830), 81.7% participated in at least one social activity; physical (65.8%) and work or volunteer activities (2.0%) were the most and least common. Children with severe to profound intellectual disability (ID; aPR = 0.57, CI = 0.43-0.77) and emotional dysregulation behaviors (aPR = 0.93, CI = 0.87-1.00) were less likely to participate in a social activity relative to children without these characteristics. Demographic and clinical differences were observed for social participation by activity type. Caregivers most often reported behavioral issues (72.2%), time constraints (64.4%), and lack of community resources (64.2%) as barriers to social participation.</p><p><strong>Conclusion: </strong>Increasing adaptive program availability, activity staff training, and respite support services may improve social participation.</p>","PeriodicalId":49300,"journal":{"name":"Disability and Health Journal","volume":" ","pages":"102069"},"PeriodicalIF":3.3,"publicationDate":"2026-03-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147460649","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}
引用次数: 0
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