Disability and Health Journal最新文献_第9页

Systemic barriers hinder person-centered home and community based services (HCBS): Perspectives of service users and professionals 系统性障碍阻碍了以人为本的家庭和社区服务（HCBS）：服务使用者和专业人员的观点。

IF 3.7 2区医学 Q1 HEALTH CARE SCIENCES & SERVICES

Disability and Health Journal

Pub Date : 2025-07-01 DOI: 10.1016/j.dhjo.2024.101629

Niveda Tennety , Bridgette M. Schram , Jacqueline Kish , Tonie Sadler , Ross Kaine , Katie Kaufman , Steve Lutzky , Allen Heinemann

Background

In response to the 2014 Final Settings Rule issued by the Centers for Medicaid and Medicare Services, home-and-community based services (HCBS) provider organizations strengthened person-centered (PC) planning for HCBS to improve participants' choice and control over their services. Despite the call for widespread adoption of PC services, systemic barriers influence service users’ and professionals' experiences in receiving and delivering PC services.

Objective

This study describes the perspectives of HCBS professionals and users on systemic barriers that affect PC HCBS delivery.

Methods

Semi-structured interviews with 20 HCBS users and 22 HCBS professionals explored perspectives on providing and receiving PC HCBS as well as higher level systems challenges to providing PC services. Qualitative analysis focused on participants’ perspectives of system-level issues.

Results

Qualitative analysis generated three themes: (1) Workforce considerations; (2) Resources and service access; and (3) Infrastructure for feedback. High direct service provider turnover rates, service-eligibility determination procedures, and waitlists affected service delivery. Participants highlighted a need for increased direct service provider compensation, access to higher-quality training, improved financial resources, and effective feedback infrastructures. Waiver flexibility due to the Covid-19 public health emergency allowed expanded service access and improved quality.

Conclusion

Organizational and system-level issues hinder delivery of PC services. Increased flexibility and resource allocation for service provision, as demonstrated in the Covid-19 public health emergency response, should be sustained. HCBS users’ suggestions for service-delivery improvements are consistent with recent state and organizational initiatives. HCBS improvements benefit from user-identified solutions in program development and implementation.

背景：为响应医疗补助和医疗保险服务中心发布的 2014 年《最终设置规则》，家庭和社区服务（HCBS）提供机构加强了以人为本（PC）的家庭和社区服务规划，以改善参与者对其服务的选择和控制。尽管人们呼吁广泛采用 PC 服务，但系统性障碍影响了服务使用者和专业人员在接受和提供 PC 服务时的体验：本研究描述了家庭护理服务专业人员和用户对影响个人护理家庭护理服务提供的系统性障碍的看法：对 20 名社区保健服务使用者和 22 名社区保健服务专业人员进行了半结构式访谈，探讨了他们对提供和接受个人护理社区保健服务的看法，以及提供个人护理服务所面临的更高层次的系统挑战。定性分析侧重于参与者对系统层面问题的看法：定性分析产生了三个主题：（1）劳动力考虑因素；（2）资源和服务获取；以及（3）反馈基础设施。直接服务提供者的高更替率、服务资格确定程序和等待名单影响了服务的提供。与会者强调，需要增加直接服务提供者的报酬、提供更高质量的培训、改善财政资源以及建立有效的反馈基础设施。由于 Covid-19 公共卫生紧急状况而产生的豁免灵活性允许扩大服务范围并提高服务质量：结论：组织和系统层面的问题阻碍了个人护理服务的提供。正如 Covid-19 公共卫生突发事件应对措施所展示的那样，在提供服务方面增加灵活性和资源分配应持续下去。HCBS 用户对服务提供改进的建议与近期州和组织的倡议是一致的。在计划制定和实施过程中，用户确定的解决方案将有助于改善 HCBS。

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引用次数: 0

Inequities in medicaid home- and community-based services waiver enrollment among people with intellectual and/or developmental disabilities: A nationwide claims-based analysis 智力和/或发育障碍人士在医疗补助居家和社区服务豁免注册方面的不平等：基于索赔的全国性分析。

IF 3.7 2区医学 Q1 HEALTH CARE SCIENCES & SERVICES

Disability and Health Journal

Pub Date : 2025-07-01 DOI: 10.1016/j.dhjo.2024.101676

A. Alex Levine , Megan B. Cole , Amy Lynn Michals , Na Wang , Eric Rubenstein

Background

States use Medicaid 1915(c) waiver programs to enable access to home- and community-based services for people with intellectual and/or developmental disabilities (I/DD). However, enrollment rates and potential inequities are not well documented, impeding efforts to improve care access and quality for waiver program enrollees, especially for racially minoritized beneficiaries experiencing compounded barriers to services and supports.

Objective

To characterize year-by-year 1915(c) waiver program enrollment among Medicaid-enrolled adults with I/DD from 2016 to 2019 and to analyze population-level inequities by type of I/DD and racial/ethnic group.

Methods

Our data source was 2016–2019 Medicaid Transformed Medicaid Statistical Information System Analytic Files Demographic and Eligibility files for beneficiaries with Down syndrome, autism, and intellectual disability. We used generalized estimating equation linear models to estimate the associations of type of I/DD and racial/ethnic group with the probability of 1915(c) waiver program enrollment and reported (1) unadjusted estimates and (2) estimates adjusted for demographics with state and year fixed effects.

Results

From 2016 to 2019, across all types of I/DD and racial/ethnic groups, unadjusted 1915(c) waiver program enrollment rates ranged from 40 to 60 % nationwide. We found modest growth in 1915(c) I/DD waiver program enrollment but persistent inequities over time. Compared to beneficiaries with intellectual disabilities, beneficiaries with autism were less likely to enroll while beneficiaries with Down syndrome were more likely. While some racial/ethnic groups had higher unadjusted mean enrollment, after adjustment, racially minoritized beneficiaries were 3.66–12.0 percentage points less likely to enroll compared to white non-Hispanic beneficiaries.

Conclusions

Given extensive waiting lists for 1915(c) waiver programs, Medicaid programs should evaluate existing enrollment and authorization processes and consider alternative HCBS program authorities.

背景：各州利用医疗补助 1915（c）减免计划为智力和/或发育障碍（I/DD）患者提供家庭和社区服务。然而，该计划的注册率和潜在的不公平现象并没有得到很好的记录，这阻碍了改善减免计划注册者，尤其是那些在服务和支持方面面临重重障碍的少数种族受益者获得护理的机会和质量的努力：目的：描述 2016 年至 2019 年 I/DD 成人医疗补助计划（Medicaid）1915(c) 减免计划的逐年注册情况，并按 I/DD 类型和种族/族裔群体分析人口层面的不平等现象：我们的数据来源是 2016-2019 年医疗补助转型医疗补助统计信息系统分析档案中唐氏综合症、自闭症和智障受益人的人口统计和资格档案。我们使用广义估计方程线性模型来估计 I/DD 类型和种族/族裔群体与 1915(c) 减免计划注册概率之间的关联，并报告了（1）未调整的估计值和（2）根据人口统计学因素和州及年份固定效应调整后的估计值：从 2016 年到 2019 年，在所有类型的 I/DD 和种族/族裔群体中，全国范围内未经调整的 1915（c）减免计划注册率介于 40% 到 60% 之间。我们发现，1915(c) I/DD 减免计划的注册率略有增长，但长期存在不公平现象。与智障受益人相比，患有自闭症的受益人的注册率较低，而患有唐氏综合症的受益人的注册率较高。虽然一些种族/族裔群体的未调整平均注册率较高，但经过调整后，与白人非西班牙裔受益人相比，少数种族受益人的注册率要低 3.66-12.0 个百分点：鉴于 1915（c）豁免计划的候选者众多，医疗补助计划应评估现有的注册和授权程序，并考虑替代性的 HCBS 计划授权。

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引用次数: 0

Obesity prevalence in two national cohorts of children with disabilities: Patterns over time and by disability subgroups 两个国家残疾儿童队列的肥胖患病率：随时间和残疾亚组的模式。

IF 3.3 2区医学 Q1 HEALTH CARE SCIENCES & SERVICES

Disability and Health Journal

Pub Date : 2025-06-27 DOI: 10.1016/j.dhjo.2025.101920

North Cooc , Alexis Bacon-Yates , Kevin A. Gee

Background

Obesity in the United States disproportionately affects children with disabilities, yet little is known about how their obesity rates change over time or differ across disability subgroups.

Objective

This study examined changes in obesity rates in two nationally representative cohorts of children from kindergarten to grade five. Obesity rates were further disaggregated for four less examined disability subgroups: speech or language impairment (SLI), specific learning disability (SLD), intellectual disability (ID), and autism spectrum disorder (ASD).

Methods

Data from the Early Childhood Longitudinal Study-Kindergarten (ECLS-K: 1999 and ECLS-K: 2011) on two cohorts of children (approximately N = 9800 and N = 8500) were analyzed using logistic regression.

Results

In both cohorts, obesity among children with disabilities increased from kindergarten (16–18 %) to grade five (26–31 %), at which point their rates were nearly 4–7 percentage points higher than children without disabilities. Obesity rates and grade-level trends were similar by disability subgroups in both cohorts.

Conclusions

Our results underscore the importance of tracking dietary, behavioral, and physical activity changes in children with disabilities that may increase or mitigate their risks of obesity. Targeted obesity prevention efforts should also extend to children in the less severe SLI and SLD categories.

背景：在美国，肥胖对残疾儿童的影响不成比例，但人们对他们的肥胖率如何随时间变化或不同残疾亚组的差异知之甚少。目的：本研究考察了两组具有全国代表性的幼儿园至五年级儿童肥胖率的变化。肥胖率进一步细分为四个较少检查的残疾亚组：言语或语言障碍（SLI），特殊学习障碍（SLD），智力残疾（ID）和自闭症谱系障碍（ASD）。方法：采用logistic回归分析《幼儿纵向研究-幼儿园》（ECLS-K: 1999年和ECLS-K: 2011年）两组儿童（N = 9800和N = 8500）的数据。结果：在这两个队列中，残疾儿童的肥胖率从幼儿园（16- 18%）增加到五年级（26- 31%），在这一阶段，他们的肥胖率比非残疾儿童高出近4-7个百分点。在两个队列中，残疾亚组的肥胖率和年级趋势相似。结论：我们的研究结果强调了跟踪残疾儿童饮食、行为和身体活动变化的重要性，这些变化可能增加或减轻他们的肥胖风险。有针对性的肥胖预防工作也应该扩展到不太严重的特殊语言障碍和特殊语言障碍类别的儿童。

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引用次数: 0

Response to Letter to the editor concerning Van Deynse et al. “one-year employment outcome prediction after traumatic brain injury: a CENTER-TBI study” 给编辑关于Van Deynse等人的信的回应。“创伤性脑损伤后一年就业结果预测：一项中心- tbi研究”。

IF 3.3 2区医学 Q1 HEALTH CARE SCIENCES & SERVICES

Disability and Health Journal

Pub Date : 2025-06-25 DOI: 10.1016/j.dhjo.2025.101917

Helena Van Deynse , Wilfried Cools , Viktor-Jan De Deken

引用次数: 0

Needs assessment of training midwifery, nursing, and medical students in sexual and reproductive health care for people with disabilities in Tanzania 对坦桑尼亚助产学、护理学和医科学生在残疾人性健康和生殖健康方面的培训需求进行评估。

IF 3.3 2区医学 Q1 HEALTH CARE SCIENCES & SERVICES

Disability and Health Journal

Pub Date : 2025-06-20 DOI: 10.1016/j.dhjo.2025.101919

Kristen P. Mark , Stella E. Mushy , Marguerite Puchner-Hardman , Lucy R. Mgopa , Gift G. Lukumay , B.R. Simon Rosser , Agnes F. Massawe , Dorkasi L. Mwakawanga , Victor Z. Chikwala , Emmanuel I. Sumari , Ally A. Lyimo , Gudrun Kilian , Maria E. Trent , Michael W. Ross , Charlotta Löfgren , Jennifer J. Connor , Rashid H. Mfinanga , Dickson A. Mkoka

Background

Tanzania has a sexual and reproductive health (SRH) crisis, a particularly vulnerable population of people with disabilities (PWD), and a need for healthcare providers trained in PWD-focused SRH care. However, SRH services are limited, and the inclusion of PWD in SRH efforts is rare in Tanzania. The current study examined the feasibility and acceptability of addressing this critical gap by training future healthcare professionals in SRH for PWD.

Objective

To determine the feasibility and acceptability of a PWD-focused SRH training to be delivered to healthcare students attending Muhimbili University of Health and Allied Science (MUHAS) in Dar es Salaam, Tanzania.

Methods

A mixed methods design via a survey taken by 409 medical, nursing, and midwifery student participants was employed to determine the feasibility and acceptability of a new curriculum focused on the SRH needs of PWD. Data were assessed using descriptive statistics and reflexive content analysis.

Results

Data indicate that 83.6% and 97.6% of medical, nursing, and midwifery students believe that an SRH training centered on the needs of PWD is feasible and acceptable, respectively. Moreover, findings indicated that 50.4% of medical, nursing, and midwifery students at MUHAS receive little to no training in SRH for PWD. Participants’ qualitative responses indicated that the training would improve the quality of life for PWD, address their vulnerability and healthcare neglect, and benefit society.

Conclusion

MUHAS students find a PWD-focused SRH training to be feasible, acceptable, and needed, presenting an opportunity for great impact.

背景：坦桑尼亚面临性健康和生殖健康（SRH）危机，特别脆弱的残疾人人口（PWD），需要受过以残疾人为重点的性健康和生殖健康护理培训的保健提供者。然而，性健康和生殖健康服务有限，在坦桑尼亚，将残疾人纳入性健康和生殖健康工作的情况很少见。目前的研究考察了通过培训未来的医疗保健专业人员在残疾患者的性健康和生殖健康方面解决这一关键差距的可行性和可接受性。目的：确定向坦桑尼亚达累斯萨拉姆Muhimbili卫生与相关科学大学（MUHAS）的保健专业学生提供以残疾人为重点的SRH培训的可行性和可接受性。方法：采用混合方法设计，对409名医学、护理和助产学学生进行调查，以确定针对残疾患者SRH需求的新课程的可行性和可接受性。使用描述性统计和反身性内容分析对数据进行评估。结果：83.6%的医科学生、97.6%的护理学学生和97.6%的助产学学生分别认为以残疾人需求为中心的SRH培训是可行的和可接受的。此外，调查结果表明，在MUHAS， 50.4%的医学、护理和助产学学生几乎没有接受过残疾人性健康和生殖健康方面的培训。与会者的定性回答表明，培训将改善残疾人的生活质量，解决他们的脆弱性和医疗忽视问题，造福社会。结论：MUHAS学生发现以残疾人为中心的SRH培训是可行的，可接受的，也是必要的，提供了一个产生巨大影响的机会。

{"title":"Needs assessment of training midwifery, nursing, and medical students in sexual and reproductive health care for people with disabilities in Tanzania","authors":"Kristen P. Mark , Stella E. Mushy , Marguerite Puchner-Hardman , Lucy R. Mgopa , Gift G. Lukumay , B.R. Simon Rosser , Agnes F. Massawe , Dorkasi L. Mwakawanga , Victor Z. Chikwala , Emmanuel I. Sumari , Ally A. Lyimo , Gudrun Kilian , Maria E. Trent , Michael W. Ross , Charlotta Löfgren , Jennifer J. Connor , Rashid H. Mfinanga , Dickson A. Mkoka","doi":"10.1016/j.dhjo.2025.101919","DOIUrl":"10.1016/j.dhjo.2025.101919","url":null,"abstract":"<div><h3>Background</h3><div>Tanzania has a sexual and reproductive health<span> (SRH) crisis, a particularly vulnerable population of people with disabilities (PWD), and a need for healthcare providers trained in PWD-focused SRH care. However, SRH services are limited, and the inclusion of PWD in SRH efforts is rare in Tanzania. The current study examined the feasibility and acceptability of addressing this critical gap by training future healthcare professionals in SRH for PWD.</span></div></div><div><h3>Objective</h3><div>To determine the feasibility and acceptability of a PWD-focused SRH training to be delivered to healthcare students attending Muhimbili University of Health and Allied Science (MUHAS) in Dar es Salaam, Tanzania.</div></div><div><h3>Methods</h3><div>A mixed methods design via a survey taken by 409 medical, nursing, and midwifery<span> student participants was employed to determine the feasibility and acceptability of a new curriculum focused on the SRH needs of PWD. Data were assessed using descriptive statistics and reflexive content analysis.</span></div></div><div><h3>Results</h3><div>Data indicate that 83.6% and 97.6% of medical, nursing, and midwifery students believe that an SRH training centered on the needs of PWD is feasible and acceptable, respectively. Moreover, findings indicated that 50.4% of medical, nursing, and midwifery students at MUHAS receive little to no training in SRH for PWD. Participants’ qualitative responses indicated that the training would improve the quality of life for PWD, address their vulnerability and healthcare neglect, and benefit society.</div></div><div><h3>Conclusion</h3><div>MUHAS students find a PWD-focused SRH training to be feasible, acceptable, and needed, presenting an opportunity for great impact.</div></div>","PeriodicalId":49300,"journal":{"name":"Disability and Health Journal","volume":"19 1","pages":"Article 101919"},"PeriodicalIF":3.3,"publicationDate":"2025-06-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144486681","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

Status of local governments’ disaster preparedness targeting persons with physical disabilities in Japan 日本地方政府针对残疾人的防灾工作现状。

IF 3.3 2区医学 Q1 HEALTH CARE SCIENCES & SERVICES

Disability and Health Journal

Pub Date : 2025-06-19 DOI: 10.1016/j.dhjo.2025.101918

Kyo Takahashi , Kenji Takaki , Shutaro Koyama , Jun Suzurikawa

Background

During disasters, persons with physical disabilities face various difficulties. Local governments need to improve disaster preparedness to support persons with physical disabilities.

Objective

This study aimed to identify the status and concerns of different-sized local governments in Japan on disaster preparedness (designation of welfare evacuation centers and development of individual evacuation plans) for persons with physical disabilities.

Methods

In February 2023, questionnaires were distributed among the local governments of all 1724 municipalities in Japan. In this survey, the officials responsible for disaster preparedness for persons with disabilities answered questions on welfare evacuation centers and individual evacuation plans. Further, the associations between responses and population sizes were examined using a chi-square test.

Results

In total, 812 Japanese municipalities responded to the survey. Results revealed that approximately half of the municipalities did not have designated welfare evacuation centers. Further, the larger the population, the higher the proportion of undesignated welfare evacuation centers. At the time of this study, only 59 local governments had completed the individual evacuation plans for targeted persons. The biggest difficulty was understanding the needs of persons with disabilities.

Conclusions

The difficulty in designating welfare evacuation centers and developing individual evacuation plans progressively increases with the increase in a municipality's population size. Although large local governments may possess abundant disaster preparedness resources, they often find it difficult to advance such measures to persons with physical disabilities because such actions require detailed responses from these individuals.

背景：在灾害中，身体残疾的人面临着各种各样的困难。地方政府要加强对残疾人的防灾支持。目的：本研究旨在了解日本不同规模的地方政府对残障人士备灾（福利疏散中心的指定和个人疏散计划的制定）的现状和关注。方法：于2023年2月对日本全部1724个直辖市的地方政府发放调查问卷。在这项调查中，负责残疾人灾难准备的官员回答了有关福利疏散中心和个人疏散计划的问题。此外，使用卡方检验检验了反应与人口规模之间的关系。结果：共有812个日本城市回应了调查。结果显示，大约一半的城市没有指定的福利疏散中心。此外，人口越多，非指定福利疏散中心的比例越高。在本研究进行时，只有59个地方政府完成了针对目标人员的个别疏散计划。最大的困难是了解残疾人的需要。结论：随着城市人口规模的增加，福利疏散中心的设置和个别疏散计划的制定难度逐渐增加。虽然大型地方政府可能拥有丰富的备灾资源，但它们往往发现很难向身体残疾的人推广这些措施，因为这些行动需要这些个人的详细反应。

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引用次数: 0

Letter to the editor concerning Van Deynse’s et al. “one-year employment outcome prediction after traumatic brain injury: a CENTER-TBI study” 给编辑的关于Van Deynse等人的信。“创伤性脑损伤后一年就业结果预测：一项中心- tbi研究”。

IF 3.3 2区医学 Q1 HEALTH CARE SCIENCES & SERVICES

Disability and Health Journal

Pub Date : 2025-06-18 DOI: 10.1016/j.dhjo.2025.101916

Brason Lee

引用次数: 0

Diaphragmatic mobility and its relationship with the functional exercise capacity, fatigue severity, symptoms of fatigue, and health-related quality of life in children with cerebral palsy 脑瘫儿童膈肌活动度及其与功能性运动能力、疲劳严重程度、疲劳症状和健康相关生活质量的关系

IF 3.3 2区医学 Q1 HEALTH CARE SCIENCES & SERVICES

Disability and Health Journal

Pub Date : 2025-06-13 DOI: 10.1016/j.dhjo.2025.101915

Ümit Erkut , Hasan Bingöl

Background

Evidence suggests that diaphragmatic mobility (DM) is reduced in children with cerebral palsy (CP). However, the relationships between DM and physical fitness, fatigue, and quality of life in children with CP have yet to be established.

Objective

This study examined the relationship between DM and functional exercise capacity (FEC), fatigue severity, fatigue symptoms, and health-related quality of life (HRQOL) in children with CP.

Methods

Twenty children with the ambulatory CP and 10 healthy peers participated in the study. DM was assessed using ultrasonography, while FEC, fatigue severity, HRQOL, and fatigue symptoms were evaluated using the 6-Minute Walking Test (6-MWT), Fatigue Severity Scale (FSS), Pediatric Quality of Life Inventory 3.0 Cerebral Palsy Module (PedsQL 3.0 CP module), and Pediatric Quality of Life Inventory 3.0 Multidimensional Fatigue Scale (PedsQL 3.0-MFS), respectively. Linear correlations, and non-parametric tests were performed using IBM SPSS Statistics 25.0, while path analysis was performed using IBM SPSS AMOS version 20.0.

Results

Significant correlations were found between DM and FEC (right DM: r = 0.85; left DM: r = 0.84), fatigue severity (right DM: r = −0.73; left DM: r = −0.72), the General Fatigue subdomain of the PedsQL 3.0-MFS (right DM: r = 0.66; left DM: r = 0.65), and the Daily Activities (right DM: r = 0.79; left DM: r = 0.80), Movement and Balance (right DM: r = 0.73; left DM: r = 0.73), and Fatigue (right DM: r = 0.83; left DM: r = 0.82) subdomains of the PedsQL CP module Path analysis revealed that DM had significant direct effects on FEC and fatigue severity (β₁ = −0.72, p < 0.001; β₂ = 0.84, p < 0.001) and an indirect effect on PedsQL 3.0-MFS General Fatigue (β = −0.72 ∗ 0.50) through aerobic capacity and fatigue severity.

Conclusion

The findings suggest that specific management strategies, including inspiratory muscle training, respiratory exercises, manual diaphragmatic stretching techniques, and feedback devices, are necessary to address reduced DM in children with CP.

背景：有证据表明脑瘫（CP）患儿膈肌活动度（DM）降低。然而，糖尿病与CP患儿身体健康、疲劳和生活质量之间的关系尚未确定。目的：探讨糖尿病与慢性阻塞性脑瘫患儿功能运动能力（FEC）、疲劳程度、疲劳症状及健康相关生活质量（HRQOL）的关系。方法：选取20例门诊慢性阻塞性脑瘫患儿和10例健康同伴为研究对象。采用超声评估DM，分别采用6分钟步行测试（6-MWT）、疲劳严重程度量表（FSS）、儿童生活质量量表3.0脑瘫模块（PedsQL 3.0 CP模块）和儿童生活质量量表3.0多维疲劳量表（PedsQL 3.0- mfs）评估FEC、疲劳严重程度、HRQOL和疲劳症状。采用IBM SPSS Statistics 25.0进行线性相关检验和非参数检验，采用IBM SPSS AMOS version 20.0进行通径分析。结果：DM与FEC呈显著相关(右DM: r = 0.85；左DM: r = 0.84)，疲劳程度(右DM: r = -0.73；左DM: r = -0.72), PedsQL 3.0-MFS的通用疲劳子域(右DM: r = 0.66；左DM: r = 0.65)和日常活动(右DM: r = 0.79；左DM: r = 0.80)，运动与平衡(右DM: r = 0.73；左DM: r = 0.73)和疲劳(右DM: r = 0.83；PedsQL CP模块路径分析显示，DM对FEC和疲劳严重程度有显著的直接影响（β1 = -0.72, p 2 = 0.84, p）。结论：研究结果表明，具体的管理策略，包括吸气肌训练、呼吸练习、手动膈肌拉伸技术和反馈装置，是解决CP患儿DM减少的必要措施。

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引用次数: 0

Igniting the fire within: An innovative residential rehabilitation program for people with spinal cord injury 点燃内心之火：为脊髓损伤患者提供的创新住宅康复计划。

IF 3.3 2区医学 Q1 HEALTH CARE SCIENCES & SERVICES

Disability and Health Journal

Pub Date : 2025-06-12 DOI: 10.1016/j.dhjo.2025.101913

Lori Hochman , Anita Santasier

Background

Shortened rehabilitation stays following spinal cord injury (SCI) limits rehabilitation potential and adversely impacts psychosocial health, functional goal capacity, and quality of life. Designed to fill this healthcare gap, Empower SCI (ESCI) was established to provide a second chance at rehabilitation using a short-term residential rehabilitation model shaped by participant-driven goals through physical and occupational therapy, adaptive recreation, rehabilitation counseling, and education sessions. A volunteer staff of multidisciplinary healthcare professionals and health professional students provides the supportive environment.

Objective

This qualitative inquiry aimed to reveal the outcomes and subsequent impact of the ESCI 2023 programs on the participants' physical, emotional, and psychosocial development.

Methods

Nine participants from the ESCI 2023 programs volunteered to participate in semi-structured interviews. The interviews were analyzed using a grounded theory approach, and themes and subthemes were established. Methodological rigor was established through multiple means.

Results

Three themes, each with subthemes, emerged from the data: 1. Positive participant change, 2. Positive life changing perspective shift, and 3. Integral ESCI program ingredients.

Conclusion

The comprehensive nature of the impactful changes on participant's physical, emotional, and psychosocial development are well aligned with the International Classification of Functioning, Disability, and Health, a biopsychosocial model of disability. Additionally, the motivation for the participants' perspective shift is consistent with Maslow's Hierarchy of Needs. The evidence from this study supports the value of short-term residential rehabilitation programs that are driven by participant centered goals and occur in the SCI healthcare continuum when individuals can maximize their potential to live more meaningful lives.

背景：脊髓损伤（SCI）后缩短的康复时间限制了康复潜力，并对心理社会健康、功能目标能力和生活质量产生不利影响。为了填补这一医疗保健缺口，Empower SCI （ESCI）的建立是为了提供第二次康复机会，采用短期住院康复模式，通过物理和职业治疗、适应性娱乐、康复咨询和教育课程来塑造参与者驱动的目标。由多学科医疗保健专业人员和卫生专业学生组成的志愿工作人员提供支持性环境。目的：本定性调查旨在揭示ESCI 2023项目对参与者身体、情感和心理社会发展的结果和后续影响。方法：来自ESCI 2023项目的9名参与者自愿参加半结构化访谈。访谈采用扎根理论的方法进行分析，并建立主题和副主题。通过多种手段确立了方法的严谨性。结果：从数据中出现了三个主题，每个主题都有子主题：积极的参与者改变，2。2、积极改变生活的视角转变；集成ESCI程序成分。结论：对参与者身体、情感和心理社会发展的影响变化的综合性质与国际功能、残疾和健康分类（残疾的生物心理社会模型）完全一致。此外，参与者视角转变的动机与马斯洛需求层次理论是一致的。本研究的证据支持短期住院康复项目的价值，这些项目是由参与者为中心的目标驱动的，发生在脊髓损伤医疗连续体中，当个人可以最大限度地发挥他们的潜力，过上更有意义的生活。

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引用次数: 0

Multi-center improvement in screening for pain that affects activities in adults with cerebral palsy 影响成人脑瘫患者活动的疼痛筛查的多中心改进。

IF 3.3 2区医学 Q1 HEALTH CARE SCIENCES & SERVICES

Disability and Health Journal

Pub Date : 2025-06-12 DOI: 10.1016/j.dhjo.2025.101911

Amy F. Bailes , Garey H. Noritz , Duncan O. Wyeth , Elizabeth J. Lucas , Elisabeth B. Bates , Hana Azizi , Cristina A. Sarmiento , Deborah E. Thorpe , Stephen A. Nichols , Jodi Kreschmer , Stephen Wisniewski , Mary Gannotti

Background

Descriptions of how centers implement standardized screening for pain and how pain affects activities among adults with cerebral palsy (CP) are lacking.

Objective

Improve screening for pain in adults with CP across three centers and examine factors associated with pain that affect activities.

Methods

Using the quality improvement (QI) infrastructure of the Cerebral Palsy Research Network (CPRN), we implemented interventions to improve screening at clinic visits for pain that affects activities for adults with CP. Four physicians from three CPRN centers in the United States performed interventions. To track progress, we collected visit data cross sectionally every two weeks. Descriptive statistics, analysis of variance, and logistic regression evaluated relationships in a cohort of visits after screening practices had been established.

Results

Screening improved from 42 % at baseline to over 90 %. After three months of sustained screening, we assessed 423 visits. Pain was reported at 185/423 (44 %) of visits. 100/185 (54 %) reported pain that affected activities. Increasing age, female gender, and greater motor function were associated with pain (p < 0.001) and pain that affects activities (p < 0.01). Females reported pain 3.4 times and pain that affects activity 2.2 times more than males.

Conclusion

QI methodology was successful at improving screening for pain that affects activities in adults with CP. Lower rates of pain were found (44 %) than previous reports, with similar findings about pain affecting activities and associated characteristics. Next steps should include continued screening with improvement in differentiating proxy vs self-report and including other domains of pain important to guide care.

背景：目前缺乏关于中心如何实施疼痛标准化筛查以及疼痛如何影响成人脑瘫（CP）患者活动的描述。目的：改善三个中心对成年CP患者疼痛的筛查，并检查影响活动的疼痛相关因素。方法：利用脑瘫研究网络（CPRN）的质量改进（QI）基础设施，我们实施了干预措施，以改善临床就诊时对影响成年脑瘫患者活动的疼痛的筛查。来自美国三家CPRN中心的四名医生进行了干预。为了跟踪进展，我们每两周收集一次横断面访问数据。描述性统计、方差分析和逻辑回归评估了筛查实践建立后就诊队列的关系。结果：筛查率从基线时的42%提高到90%以上。经过三个月的持续筛查，我们评估了423次就诊。有185/423（44%）的患者报告疼痛。100/185（54%）报告疼痛影响活动。年龄、女性和运动功能的增加与疼痛有关(p结论：QI方法成功地改善了对影响CP成人活动的疼痛的筛查。与以前的报道相比，发现疼痛的发生率（44%）较低，疼痛影响活动和相关特征的发现相似。接下来的步骤应该包括继续筛查，以区分代理与自我报告，并包括其他重要的疼痛领域，以指导护理。

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