Disability and Rehabilitation最新文献_第4页

Thumbs-out classification: a novel tool for detection of thumb-in- palm deformity in children and youth with cerebral palsy. 拇外翻分类：一种用于脑瘫儿童和青少年拇外翻畸形检测的新工具。

IF 2.2 4区医学

Disability and Rehabilitation Pub Date : 2026-10-05 DOI: 10.1080/09638288.2026.2741347

Jenny Hedberg Graff, Lena Krumlinde-Sundholm, Fredrik Granström, Izabela Blaszczyk, Sara Nordell, Susanne Nicklasson, Marianne Arner

{"title":"Thumbs-out classification: a novel tool for detection of thumb-in- palm deformity in children and youth with cerebral palsy.","authors":"Jenny Hedberg Graff, Lena Krumlinde-Sundholm, Fredrik Granström, Izabela Blaszczyk, Sara Nordell, Susanne Nicklasson, Marianne Arner","doi":"10.1080/09638288.2026.2741347","DOIUrl":"https://doi.org/10.1080/09638288.2026.2741347","url":null,"abstract":"Purpose: To develop a simple screening tool, the Thumbs-Out Classification (TOC), for detecting thumb-in-palm deformity during clinical follow-ups of children with cerebral palsy (CP), and to evaluate its reliability.Methods: The TOC was developed through expert consensus and consists of three levels of radial thumb abduction: normal (green), slightly reduced (yellow), and severely reduced (red). Classification cut-offs were established using goniometric measurements from 20 typically developing children. These cut-offs were then applied to classify active and passive radial thumb abduction in 61 children with CP (median age 9 years). Inter-rater, intra-rater, and test-retest reliability were assessed using Cohen's weighted kappa (κw) and percentage agreement.Results: Agreement between goniometric measurements and TOC levels was moderate for both active (κw = 0.59) and passive (κw = 0.54) radial abduction, with substantial percentage agreement (79% and 81%, respectively). Inter-rater reliability was almost perfect for active (κw = 0.93) and passive (κw = 0.89) radial abduction. Test-retest reliability was also almost perfect (active κw = 0.84; passive κw = 0.93).Conclusions: The TOC is a reliable screening tool for monitoring thumb positioning in children with CP. It may facilitate detection of thumb-in-palm deformity and support timely interventions aimed at optimising hand function.","PeriodicalId":50575,"journal":{"name":"Disability and Rehabilitation","volume":" ","pages":"1-10"},"PeriodicalIF":2.2,"publicationDate":"2026-10-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149117867","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"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

Cross-cultural adaptation and reliability, agreement, and construct validity of the Turkish neck disability 10 in patients with neck pain. 土耳其颈部残疾患者颈痛的跨文化适应、可靠性、一致性和结构效度

IF 2.2 4区医学

Disability and Rehabilitation Pub Date : 2026-10-05 DOI: 10.1080/09638288.2026.2741343

Hasan Atacan Tonak, Sultan Baştürk, Fatoş Kırteke Duman, Ozan Demirci

{"title":"Cross-cultural adaptation and reliability, agreement, and construct validity of the Turkish neck disability 10 in patients with neck pain.","authors":"Hasan Atacan Tonak, Sultan Baştürk, Fatoş Kırteke Duman, Ozan Demirci","doi":"10.1080/09638288.2026.2741343","DOIUrl":"https://doi.org/10.1080/09638288.2026.2741343","url":null,"abstract":"Purpose: To cross-culturally adapt the Neck Disability 10 (ND10) into Turkish and evaluate its measurement properties in adults with neck pain and related disorders.Materials and methods: Following forward-backward translation, expert committee review, and cognitive debriefing, 200 Turkish-speaking adults with clinician-confirmed neck pain or neck-related disorders completed the ND10-TR, Neck Disability Index (NDI), Disabilities of the Arm, Shoulder and Hand Questionnaire (DASH), and American Shoulder and Elbow Surgeons Shoulder Assessment Form (ASES). Eighty stable participants completed a 7-day retest. Structural validity, internal consistency, test-retest reliability, agreement, floor/ceiling effects, construct validity, and known-groups validity were examined.Results: Cognitive debriefing supported comprehensibility, relevance, and comprehensiveness. Structural validity supported a one-factor solution, and internal consistency was excellent (Cronbach's α = 0.987; McDonald's ω = 0.992; ordinal α = 0.992). No floor/ceiling effects were observed. Test-retest reliability was excellent (ICC(2,1) = 0.952), with SEM = 5.61 and MDC95 = 15.54 points. Construct validity was supported by correlations with NDI (rₛ = 0.826), DASH (rₛ = 0.814), and ASES (rₛ = -0.768), and by known-groups validity across NDI categories.Conclusions: The ND10-TR is a comprehensible, reliable, and valid measure of neck-related functional disability for Turkish-speaking adults with neck pain, supporting rehabilitation assessment and outcome monitoring.","PeriodicalId":50575,"journal":{"name":"Disability and Rehabilitation","volume":" ","pages":"1-13"},"PeriodicalIF":2.2,"publicationDate":"2026-10-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149117758","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"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

GAME-PLAN framework: perspectives for enhancing physical activity participation in children and youth with disabilities. 游戏计划框架：加强残疾儿童和青年参与体育活动的观点。

IF 2.2 4区医学

Disability and Rehabilitation Pub Date : 2026-10-05 DOI: 10.1080/09638288.2026.2741354

Hércules Ribeiro Leite, Lidiane Francisca Borges Ferreira, Georgina Clutterbuck, Lívia Ferreira Coutinho Alonso, Rachel Teplicky, Débora Claësson, Gabriela Fischer, Camila Simão, Bruno Macedo, Ricardo Rodrigues de Sousa Júnior

{"title":"GAME-PLAN framework: perspectives for enhancing physical activity participation in children and youth with disabilities.","authors":"Hércules Ribeiro Leite, Lidiane Francisca Borges Ferreira, Georgina Clutterbuck, Lívia Ferreira Coutinho Alonso, Rachel Teplicky, Débora Claësson, Gabriela Fischer, Camila Simão, Bruno Macedo, Ricardo Rodrigues de Sousa Júnior","doi":"10.1080/09638288.2026.2741354","DOIUrl":"https://doi.org/10.1080/09638288.2026.2741354","url":null,"abstract":"Purpose: To provide a practical overview of the key literature and theoretical underpinnings, as well as the gaps in evidence and practice where further knowledge or efforts toward implementation are needed to promote physical activity among children with disabilities.Materials and methods: We propose the GAME-PLAN framework as a guiding structure for research, education, and clinical practice: G (Goal Setting), A (Assessing Functioning and Personal Factors), M (Mapping Barriers and Supports), E (Enhancing Environmental and Personal Supports), P (Promoting Physical Literacy-Based Interventions), L (Learning Through Experience), A (Activating Community Connections), and N (Navigating Next Steps).The GAME-PLAN structure is designed to improve understanding of the steps through which greater participation in physical activity can be promoted collaboratively between all stakeholders. It is not our intention to exhaust the understanding of this topic in this perspective review, but to present this model as a useful structure for understanding and actioning the promotion of physical activity among children and youth with disabilities.Conclusion: We invite stakeholders to view and explore possibilities from the GAME-PLAN perspective to promote greater opportunities for engagement and participation in physical activities among children and youth with disabilities.","PeriodicalId":50575,"journal":{"name":"Disability and Rehabilitation","volume":" ","pages":"1-25"},"PeriodicalIF":2.2,"publicationDate":"2026-10-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149117852","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"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

Development and validation of a Chinese self-management ability assessment scale for patients with spinal cord injury. 中国脊髓损伤患者自我管理能力评估量表的研制与验证。

IF 2.2 4区医学

Disability and Rehabilitation Pub Date : 2026-10-03 DOI: 10.1080/09638288.2026.2736722

Jing Li, Xin Wang, Xue-Yun Wang, Hang Li, Ya-Qin Hu, Ling-Yan Bao, Mei-Fen Chen

{"title":"Development and validation of a Chinese self-management ability assessment scale for patients with spinal cord injury.","authors":"Jing Li, Xin Wang, Xue-Yun Wang, Hang Li, Ya-Qin Hu, Ling-Yan Bao, Mei-Fen Chen","doi":"10.1080/09638288.2026.2736722","DOIUrl":"https://doi.org/10.1080/09638288.2026.2736722","url":null,"abstract":"Purpose: To develop and validate a scale for assessing self-management ability tailored for patients with spinal cord injury (SCI).Methods: The theoretical framework for the scale was the Integrated Theory of Health Behavior Change as well as the International Classification of Functioning, Disability, and Health. The initial version of the scale was developed through literature review, qualitative interviews, and the Delphi expert consensus method. A total of 295 patients with SCI participated in the reliability and validity testing.Results: The final scale consisted of 45 items across 5 dimensions: disease knowledge management, information and resource management, social-psychological management, daily behavior management, and rehabilitation exercise. The 5 dimensions displayed high reliability, with Cronbach's α values of 0.845-0.974, test-retest reliabilities of 0.718-0.94 and split-half reliabilities of 0.892-0.96. The content validity index was 0.961. Exploratory factor analysis identified five common factors, accounting for 66.105% of the cumulative variance.Conclusion: The self-management ability assessment scale for patients with SCI that was developed in this study was found to have acceptable reliability and validity and could effectively evaluate the self-management ability capacity of patients with SCI.","PeriodicalId":50575,"journal":{"name":"Disability and Rehabilitation","volume":" ","pages":"1-15"},"PeriodicalIF":2.2,"publicationDate":"2026-10-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149117823","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"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

Participation of fathers and siblings in home rehabilitation programmes for children with neuro-developmental delay: perspectives of fathers in Bulawayo, Zimbabwe. 父亲和兄弟姐妹参与神经发育迟缓儿童的家庭康复方案：津巴布韦布拉瓦约父亲的观点。

IF 2.2 4区医学

Disability and Rehabilitation Pub Date : 2026-10-01 Epub Date: 2026-03-28 DOI: 10.1080/09638288.2026.2647648

Precious Madzimbe, Jermaine Dambi, Soraya Maart, Lieselotte Corten

{"title":"Participation of fathers and siblings in home rehabilitation programmes for children with neuro-developmental delay: perspectives of fathers in Bulawayo, Zimbabwe.","authors":"Precious Madzimbe, Jermaine Dambi, Soraya Maart, Lieselotte Corten","doi":"10.1080/09638288.2026.2647648","DOIUrl":"10.1080/09638288.2026.2647648","url":null,"abstract":"Purpose: To assess participation levels of fathers and siblings in home-based rehabilitation for children with neuro-developmental delay (NDD) in Bulawayo, Zimbabwe, and identify facilitators and barriers.Materials and methods: A concurrent mixed-methods cross-sectional design with a dominant quantitative component and a supplementary qualitative component was used. Data were collected from 196 fathers of children with NDD at two hospitals using a questionnaire. Quantitative data were analysed using descriptive statistics and logistic regression (α = 0.05) in Stata 17.0, while open-ended responses were thematically analysed in NVivo 12 using a deductive approach informed by the Social Ecological Model.Results: Only 35 (17.9%) fathers and 20 (10.2%) siblings consistently participated. Fathers with tertiary education participated more (AOR = 6.4; 95% CI: 1.9-22.1; p = 0.003), as did fathers of male children (AOR = 2.8; 95% CI: 1.3-6.1; p = 0.009). Facilitators included ability to manage disability-related challenges and access to information. Barriers included emotional strain, work demands, and exclusion from sessions. Sibling participation was facilitated by parental supervision, play-based activities, and professional support, while barriers included school obligations and cultural norms.Conclusions: Modifiable factors affect father and sibling participation, highlighting the need for inclusive family-centred rehabilitation policies and practices.","PeriodicalId":50575,"journal":{"name":"Disability and Rehabilitation","volume":" ","pages":"6618-6635"},"PeriodicalIF":2.2,"publicationDate":"2026-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147534302","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"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

Living with congenital scoliosis: a qualitative phenomenological study of Chinese adolescents receiving corrective surgery. 生活与先天性脊柱侧凸：接受矫正手术的中国青少年的定性现象学研究。

IF 2.2 4区医学

Disability and Rehabilitation Pub Date : 2026-10-01 Epub Date: 2026-03-13 DOI: 10.1080/09638288.2026.2639944

Tao Chen, Qiang Li, Yong Chen, Wenjing Zhang, Jindong Yang, Mengqiu Liang, Chun Pu, Xue Lei, Deng Zhao

{"title":"Living with congenital scoliosis: a qualitative phenomenological study of Chinese adolescents receiving corrective surgery.","authors":"Tao Chen, Qiang Li, Yong Chen, Wenjing Zhang, Jindong Yang, Mengqiu Liang, Chun Pu, Xue Lei, Deng Zhao","doi":"10.1080/09638288.2026.2639944","DOIUrl":"10.1080/09638288.2026.2639944","url":null,"abstract":"Purpose: To explore how adolescents with congenital scoliosis receiving tertiary corrective care describe daily life, social relationships, emotional adaptation, and treatment.Materials/methods: Qualitative phenomenological interviews were conducted face-to-face in a Chinese tertiary referral hospital (Oct 2023 to Jan 2024). Adolescents aged 12-18 years were purposively sampled. Recordings were transcribed verbatim and analyzed using Colaizzi's seven-step method with team coding and member checking.Results: Eleven adolescents (mean age 14.6 years; 45.5% female) participated; nine had undergone corrective surgery. Four themes emerged: (1) surgery as restoration of participation (schooling, mobility, breathing comfort) despite perioperative fear, pain, and recovery burden; (2) function and quality of life prioritized over scarring, although some voiced appearance-related worries; (3) peer and family life described as largely ordinary, with overt stigmatization infrequently reported and often framed as minor; (4) emotional resilience and rejection of a tragedy framing, including contrasts between adolescent self-appraisal and adult worry.Conclusion: In this tertiary-care cohort, adolescents centered participation and ordinariness more than stigma or sadness. Care and research should prioritize adolescent-defined outcomes and avoid presuming psychosocial distress as a default.","PeriodicalId":50575,"journal":{"name":"Disability and Rehabilitation","volume":" ","pages":"6901-6911"},"PeriodicalIF":2.2,"publicationDate":"2026-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147461073","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"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

Perspectives of Japanese physical therapists on the use of virtual reality in stroke rehabilitation: a mixed-methods study. 日本物理治疗师在脑卒中康复中使用虚拟现实的观点：一项混合方法研究。

IF 2.2 4区医学

Disability and Rehabilitation Pub Date : 2026-10-01 Epub Date: 2026-03-17 DOI: 10.1080/09638288.2026.2638656

Minjoon Kim, Chirathip Thawisuk, Shunichi Uetake, Fuminari Kaneko, Hyeong-Dong Kim

{"title":"Perspectives of Japanese physical therapists on the use of virtual reality in stroke rehabilitation: a mixed-methods study.","authors":"Minjoon Kim, Chirathip Thawisuk, Shunichi Uetake, Fuminari Kaneko, Hyeong-Dong Kim","doi":"10.1080/09638288.2026.2638656","DOIUrl":"10.1080/09638288.2026.2638656","url":null,"abstract":"Purpose: Virtual reality (VR) provides engaging and motivating environments that may enhance motor recovery and patient engagement in stroke rehabilitation. However, clinical adoption remains limited in Japan. This study explored Japanese physical therapists' perspectives on VR use and identified factors influencing adoption.Methods: A sequential explanatory mixed-methods design was used. In Phase 1, 141 physical therapists completed a survey adapted from the ADOPT-VR framework. Correlation and multiple regression analyses identified predictors of behavioral intention. In Phase 2, semi-structured interviews with 12 therapists provided in-depth insights, analyzed using thematic analysis.Results: Compatibility (r = .456), perceived usefulness (r = .419), attitude (r = .415), time availability (r = .409), and technical support (r = .405) were moderately correlated with behavioral intention. Regression results indicated that compatibility, technical support, and social norms were significant predictors. Qualitative findings highlighted barriers such as limited training, equipment complexity, and unclear patient selection, while facilitators included peer modeling, hands-on learning, and leadership support.Conclusion: Although attitudes toward VR are positive, adoption is constrained by contextual and organizational barriers. Clinically compatible implementation strategies, targeted training, and institutional support are needed to enhance VR integration in stroke rehabilitation.","PeriodicalId":50575,"journal":{"name":"Disability and Rehabilitation","volume":" ","pages":"6857-6872"},"PeriodicalIF":2.2,"publicationDate":"2026-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147475403","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"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

Homehabilitation - development of a new pathway for management of slow to recover children in an inpatient rehabilitation ward. 家庭康复——为住院康复病房中康复缓慢的儿童的管理开辟了一条新途径。

IF 2.2 4区医学

Disability and Rehabilitation Pub Date : 2026-10-01 Epub Date: 2026-03-11 DOI: 10.1080/09638288.2026.2641377

Davina Lo, Rose Gilmore, Sasaka Bandaranayake, Naomi Blakely, Emily Burley, Yvette Callaghan, Theresa Carroll, Nicole Cooper, Lisa Copeland, Matthew Dawes, Sarah Donaghey, Anna Doyle, Priya Edwards, Jane Fong, Grainne Lee, Shailendra Maharaj, Elizabeth Maiden, Melanie Mildenhall, Heather Miles, Scarlett Murray Salter, Jacqueline Nightingale, William Padman, Erin Ransley, Suzanne Simpson, Lucy Sullivan, Mandy Tanner, Louise Tyack, Penny Ireland

{"title":"Homehabilitation - development of a new pathway for management of slow to recover children in an inpatient rehabilitation ward.","authors":"Davina Lo, Rose Gilmore, Sasaka Bandaranayake, Naomi Blakely, Emily Burley, Yvette Callaghan, Theresa Carroll, Nicole Cooper, Lisa Copeland, Matthew Dawes, Sarah Donaghey, Anna Doyle, Priya Edwards, Jane Fong, Grainne Lee, Shailendra Maharaj, Elizabeth Maiden, Melanie Mildenhall, Heather Miles, Scarlett Murray Salter, Jacqueline Nightingale, William Padman, Erin Ransley, Suzanne Simpson, Lucy Sullivan, Mandy Tanner, Louise Tyack, Penny Ireland","doi":"10.1080/09638288.2026.2641377","DOIUrl":"10.1080/09638288.2026.2641377","url":null,"abstract":"Purpose: Paediatric rehabilitation patients who are slow to recover present a unique challenge to support in an intensive rehabilitation setting. Traditional intensive, goal-directed rehabilitation models of care that focus on recovery do not cater for the complex presentations and poorer functional outcomes associated with catastrophic injuries in a paediatric population.Materials and methods: A group of 24 experts from a paediatric rehabilitation setting have developed a series of consensus statements through a modified Delphi process. The primary purpose was to develop and describe a new expert consensus based model of service delivery (Homehabilitation) that supports children requiring a slower stream approach to rehabilitation in an inpatient setting.Results: This paper provides two options for children to be supported through either an; i) intensive goal-directed model of rehabilitation or ii) a slower approach that focuses on optimising goals of comfort, participation and ease of caregiving whilst supporting a timely, safe and sustainable discharge home.Conclusions: Developing a well-defined, slow stream model of care that focuses on optimising the patient's comfort, maximising remaining skills and providing family education will help assist children who are slow to progress. This approach provides families with a more structured and supportive discharge process.","PeriodicalId":50575,"journal":{"name":"Disability and Rehabilitation","volume":" ","pages":"7040-7049"},"PeriodicalIF":2.2,"publicationDate":"2026-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147437041","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"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 experiences of being a young carer to a parent with Huntington's disease: a thematic synthesis. 年轻时照顾患有亨廷顿舞蹈症的父母的经历：主题综合。

IF 2.2 4区医学

Disability and Rehabilitation Pub Date : 2026-10-01 Epub Date: 2026-03-29 DOI: 10.1080/09638288.2026.2651683

Lewis Pares, Fiona Eccles, Maria Dale, Jane Simpson

{"title":"The experiences of being a young carer to a parent with Huntington's disease: a thematic synthesis.","authors":"Lewis Pares, Fiona Eccles, Maria Dale, Jane Simpson","doi":"10.1080/09638288.2026.2651683","DOIUrl":"10.1080/09638288.2026.2651683","url":null,"abstract":"Purpose: This thematic synthesis explored the experiences of being a young carer to a parent with Huntington's disease.Methods: A systematic search strategy was utilised across eight databases, resulting in 13 papers that met the inclusion criteria. Thomas and Harden's thematic synthesis approach was used to guide the methodological decisions and analyse the data.Results: The analysis resulted in three themes (1) Lack of awareness, undervalued and unsupported: barriers to young carers accessing support (2) Adult responsibilities: impact on developmental stages and worries about the future, (3) Engaging with the future or living in the present: managing the impact of being a young carer while at risk of HD.Conclusions: The experiences of young carers to a parent with HD share some similarities with other young carers to a parent with chronic illness. However, a key difference is the constant reminder of their possibility of inheriting the HD gene and the effects of this on their lives. This makes it difficult for them to envision a future beyond being a young carer.","PeriodicalId":50575,"journal":{"name":"Disability and Rehabilitation","volume":" ","pages":"6729-6747"},"PeriodicalIF":2.2,"publicationDate":"2026-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147576114","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"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 lived experience of hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorders in the United Kingdom: findings from a national cross-sectional survey. 英国过度活动的埃勒斯-丹洛斯综合征和过度活动谱系障碍的生活经验：来自全国横断面调查的结果。

IF 2.2 4区医学

Disability and Rehabilitation Pub Date : 2026-10-01 Epub Date: 2026-04-03 DOI: 10.1080/09638288.2026.2646723

Kathryn M Berg, Dervil M Dockrell

{"title":"The lived experience of hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorders in the United Kingdom: findings from a national cross-sectional survey.","authors":"Kathryn M Berg, Dervil M Dockrell","doi":"10.1080/09638288.2026.2646723","DOIUrl":"10.1080/09638288.2026.2646723","url":null,"abstract":"Purpose: This study explored the lived experiences of individuals with hypermobile Ehlers-Danlos Syndrome (hEDS) and Hypermobility Spectrum Disorder (HSD) in the United Kingdom, focusing on diagnosis, access to care, and impact on daily life.Materials and methods: A cross-sectional, mixed-methods online survey was co-developed with patients and clinicians and disseminated via Ehlers-Danlos Support UK social media between September 2023 and January 2024.Results: A total of 2002 valid responses were received. Respondents were predominantly female (90.9%). The mean diagnostic delay was 19.0-21.7 years. Regional differences and heavy reliance on private healthcare were noted. Common symptoms included chronic pain (83.9%), joint subluxations (73.8%), and gastrointestinal manifestations (66.3%), and we observed high rates of neurodivergence. High rates of unemployment (45.6%), disrupted education (55.9%), and benefit dependence (47.9%) were also reported.Conclusions: Our findings highlight the urgent need for equitable, multidisciplinary care pathways co-designed with patients to reduce diagnostic delay, improve care coordination, and address the wide-ranging impacts of hEDS/HSD.","PeriodicalId":50575,"journal":{"name":"Disability and Rehabilitation","volume":" ","pages":"6545-6556"},"PeriodicalIF":2.2,"publicationDate":"2026-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147610254","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"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