Disability and Health Journal最新文献_第3页

Self-reported hearing loss and health during a pandemic: Findings from a cross-sectional analysis using a 2021 household survey 自我报告的听力损失与大流行期间的健康状况：利用 2021 年家庭调查进行横断面分析的结果

IF 3.7 2区医学 Q1 HEALTH CARE SCIENCES & SERVICES

Disability and Health Journal

Pub Date : 2025-01-01 DOI: 10.1016/j.dhjo.2024.101706

Eunice Y. Park PhD , Erin R. Nelson-Bakkum AuD , Amy A. Schultz PhD , Lauren K. Dillard AuD, PhD

Background

The COVID-19 pandemic differentially impacted individuals with hearing loss, likely in part due to increased communication difficulties from masking, a commonly implemented protective measure.

Objective

This study examines the association between self-reported hearing loss and health during the pandemic.

Methods

This study uses data from the COVID-19 Survey collected by the Survey of the Health of Wisconsin from February to March 2021. Hearing loss was defined as self-reported fair or poor hearing. The outcomes were self-reported symptoms of anxiety and depression, separately, and self-reported general health. Multivariable models adjusted for age, gender, and race/ethnicity were used to examine the associations between hearing loss with each outcome. Results are presented as prevalence ratios (PR) with corresponding 95 % confidence intervals (CI).

Results

There were 1857 participants (60.3 % female, 12.9 % non-white) with a mean age of 57.1 years in this cross-sectional study. In multivariable models, individuals with hearing loss (versus none) had higher prevalence of depression (PR: 1.22, 95 % CI: 1.06, 1.39), anxiety (PR: 1.13, 95 % CI: 1.02, 1.27), and self-reported fair or poor health (PR: 2.61, 95 % CI: 1.89, 3.61).

Conclusion

Hearing loss was associated with poorer self-reported health during winter 2021 of the COVID-19 pandemic, when mask use in public was newly mandated and vaccines were not widely available to the general public. Further research on the impact of public health policies on vulnerable populations, including those with hearing loss, is warranted. Such research could inform policy decisions that accommodate these populations.

COVID-19 大流行对听力损失患者造成了不同程度的影响，部分原因可能是由于掩蔽这一普遍采用的保护措施增加了交流困难。本研究探讨了大流行期间自我报告的听力损失与健康之间的关系。本研究使用的数据来自威斯康星州健康调查局于 2021 年 2 月至 3 月期间收集的 COVID-19 调查。听力损失被定义为自我报告的听力一般或较差。结果分别为自我报告的焦虑和抑郁症状，以及自我报告的一般健康状况。使用调整了年龄、性别和种族/族裔的多变量模型来研究听力损失与各项结果之间的关联。结果以患病率比 (PR) 和相应的 95 % 置信区间 (CI) 表示。这项横断面研究共有 1857 名参与者（60.3% 为女性，12.9% 为非白人），平均年龄为 57.1 岁。在多变量模型中，听力损失患者（与无听力损失患者相比）的抑郁（PR：1.22，95 % CI：1.06，1.39）、焦虑（PR：1.13，95 % CI：1.02，1.27）和自我报告的健康状况一般或较差（PR：2.61，95 % CI：1.89，3.61）发生率较高。在 COVID-19 大流行的 2021 年冬季，听力损失与自我报告的健康状况较差有关，当时新规定在公共场合使用口罩，而疫苗尚未向公众普及。有必要进一步研究公共卫生政策对弱势群体（包括听力损失者）的影响。此类研究可为适应这些人群的决策提供参考。

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引用次数: 0

Health disparities and injection drug use behaviors among adults with and without disabilities in the National Survey on drug use and health, 2015–2019 2015-2019 年全国毒品使用和健康调查中残疾和非残疾成年人的健康差异和注射吸毒行为。

IF 3.7 2区医学 Q1 HEALTH CARE SCIENCES & SERVICES

Disability and Health Journal

Pub Date : 2025-01-01 DOI: 10.1016/j.dhjo.2024.101715

Roberto Abadie Ph.D. , Manuel Cano Ph.D.

Background

Little is known about the prevalence of injection drug use in people with disabilities (PWD) when compared by disability type and to other adults without disabilities.

Objective or hypothesis

The prevalence of past-year injection drug use will be higher in adults with a reported disability than adults without any reported disability.

Methods

This study consisted of secondary analyses of data from the 2015–2019 National Survey of Drug Use and Health. The analytic sample comprised 214,505 US adults. Self-reported past-year injection drug use represented the outcome of interest. Disability status and socioeconomic characteristics were conceptualized as predictors, and sex and age were used as controls.

Results

Past-year prevalence of self-reported injection drug use was 0.24 % (95 % CI, 0.22–0.27) in adults without a disability but 0.66 % (95 % CI, 0.59–0.73) in adults with a disability. All disability types examined were associated with increased odds of reporting past-year injection drug use, but the strongest association was observed for disability related to difficulty concentrating (AOR, 4.90; 95 % CI, 3.92–6.14). Adjusted odds of past-year methamphetamine injection were more than three times as high in adults with a disability, compared to those without a disability (AOR, 3.21; 95 % CI, 2.37–4.33) and more than two times as high in adults with a disability for cocaine injection (AOR, 2.77; 95 % CI, 1.84–4.15).

Conclusion

Disability status is associated with injection of various types of drugs, and a variety of disability types are associated with higher odds of injection drug use.

背景：关于残疾人（PWD）注射吸毒的流行率，如果按残疾类型与其他非残疾成年人进行比较，则知之甚少：有残疾报告的成年人上一年注射吸毒的流行率将高于无残疾报告的成年人：本研究包括对 2015-2019 年全国毒品使用和健康调查数据的二次分析。分析样本包括 214,505 名美国成年人。自我报告的上一年注射吸毒情况是研究的结果。残疾状况和社会经济特征被视为预测因素，性别和年龄被用作控制因素：在无残疾的成年人中，上一年自我报告的注射吸毒流行率为 0.24 %（95 % CI，0.22-0.27），而在有残疾的成年人中，上一年自我报告的注射吸毒流行率为 0.66 %（95 % CI，0.59-0.73）。所研究的所有残疾类型都与报告过去一年注射吸毒的几率增加有关，但与注意力难以集中有关的残疾的关联性最强（AOR，4.90；95 % CI，3.92-6.14）。与无残疾的成年人相比，有残疾的成年人过去一年注射甲基苯丙胺的调整后几率高出三倍多（AOR，3.21；95 % CI，2.37-4.33），有残疾的成年人注射可卡因的调整后几率高出两倍多（AOR，2.77；95 % CI，1.84-4.15）：结论：残疾状况与注射各类药物有关，各种残疾类型与注射使用药物的较高几率有关。

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引用次数: 0

Effect of COVID-19 on livelihoods of people with and without disabilities: Results from a cross-sectional survey in 3 urban areas of Viet Nam COVID-19 对残疾人和非残疾人生计的影响：越南 3 个城市地区横断面调查的结果

IF 3.7 2区医学 Q1 HEALTH CARE SCIENCES & SERVICES

Disability and Health Journal

Pub Date : 2025-01-01 DOI: 10.1016/j.dhjo.2024.101674

Lena Morgon Banks PhD , Divya Goyal MSc , Luong Anh Ngoc MSc , Sara Rotenberg PhD , Sarah Marks MSc , Xanthe Hunt PhD , Shaffa Hameed PhD , Hoang Van Minh PhD , Vu Quynh Mai MSc

Background

The COVID-19 pandemic has had widespread health, social and economic impacts worldwide. In many contexts, it has likely exacerbated existing inequalities.

Objective

This study compares the economic impacts of the COVID-19 pandemic amongst people with and without disabilities in Viet Nam.

Methods

A telephone survey was conducted in the three largest cities of Viet Nam (Da Nang, Ha Noi, and Ho Chi Minh City) between December 2021 and January 2022. Participants were recruited through convenience sampling (n = 898; 479 people with disabilities; 419 without). The survey collected data on livelihoods, employment, household economic security, and access to social protection and assistance.

Results

People with disabilities were three times more likely to have stopped working completely (PR: 2.8, 95 % CI: 2.0–4.0), 30 % more likely to report reduced earnings (PR: 1.3, 95 % CI: 1.2–1.5), twice as likely to report severe impacts on household finances (PR: 1.9, 95 % CI: 1.6–2.3) and three times more likely to report severe impacts on household food security (PR: 3.2, 95 % CI: 2.3–4.6) since the onset of the pandemic. Amongst people with disabilities, informal workers were particularly negatively affected. Households with members with disabilities were more likely to receive some types of COVID-19-related assistance (e.g. financial or food aid), but less likely to be enrolled in social insurance.

Conclusions

Urgent and inclusive responses are necessary during crises to address the unique challenges faced by people with disabilities. Implementing comprehensive social protection measures is crucial to narrowing disparities, and maintaining well-being and economic security during shocks such as COVID-19.

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引用次数: 0

Examining outpatient occupational therapy utilization among children and youth with special health care needs in South Carolina: A structural equation model of individual- and community-level factors 研究南卡罗来纳州有特殊医疗需求的儿童和青少年使用门诊职业疗法的情况：个人和社区因素的结构方程模型。

IF 3.7 2区医学 Q1 HEALTH CARE SCIENCES & SERVICES

Disability and Health Journal

Pub Date : 2025-01-01 DOI: 10.1016/j.dhjo.2024.101687

Caitlin Koob PhD, MS, OTR/L , Sarah F. Griffin PhD, MPH , Kathleen Cartmell PhD, MPH , Lior Rennert PhD , Kerry Sease MD, MPH

Background

Children and youth with special health care needs (CYSHCN) comprise 23 % of the pediatric population in South Carolina (SC), compared to state prevalences of 13.6 %–24 % nationwide. While occupational therapy (OT) is critical to maximizing CYSHCN's participation in daily activities, there are significant disparities in rehabilitation access in the Southeast region.

Objective

This study examines associations between patient-and community-level factors and outpatient OT utilization.

Methods

This study analyzes OT utilization data among CYSHCN (N = 1913) in a health system in SC from 07/01/2022-06/31/2023, merged with Child Opportunity Index 2.0 zip-code level social drivers of health (SDOH) data. SDOH are non-medical factors that affect individual's long-term health, with estimates ranging from “very low” to “very high” opportunity. Structural equation modeling was conducted to understand complex associations between observed and latent variables in a real-world context.

Results

CYSHCN were diagnosed with congenital (40.77 %), developmental (37.87 %), and neurological/neuromuscular conditions (21.36 %). CYSHCN who were non-Hispanic Black or Hispanic and were hospitalized were associated with living in lower opportunity areas. CYSHCN with private or military/other insurance/self-pay were associated with living in higher opportunity areas than Medicaid-insured CYSHCN. CYSHCN who were female and ≥12 years demonstrated lower OT utilization. CYSHCN who participated in speech and/or physical therapy demonstrated higher OT utilization. OT utilization increased with each increase in SDOH.

Conclusion

With these findings, healthcare providers may consider accessibility barriers, including transportation, when referring CYSHCN to OT services. Further research is needed to examine the impact of household-level SDOH on OT access across SC.

背景：有特殊医疗需求的儿童和青少年（CYSHCN）占南卡罗来纳州（SC）儿科人口的 23%，而该州在全国的患病率为 13.6%-24%。职业疗法（OT）对于最大限度地提高儿童健康和护理需求者参与日常活动的能力至关重要，但东南部地区在康复服务方面却存在显著差异：本研究探讨了患者和社区层面的因素与门诊职业治疗利用率之间的关系：本研究分析了南卡罗来纳州医疗系统中 CYSHCN（N = 1913）在 2022 年 1 月 7 日至 2023 年 6 月 31 日期间的 OT 使用数据，并将其与 "儿童机会指数 2.0"（Child Opportunity Index 2.0）邮政编码级别的健康社会驱动因素（SDOH）数据合并。SDOH 是影响个人长期健康的非医疗因素，估计机会从 "非常低 "到 "非常高 "不等。为了解现实世界中观察到的变量与潜在变量之间的复杂关联，我们进行了结构方程建模：被诊断患有先天性疾病（40.77%）、发育性疾病（37.87%）和神经/神经肌肉疾病（21.36%）的 CYSHCN。非西班牙裔黑人或西班牙裔儿童的住院治疗与居住在机会较少的地区有关。与有医疗补助保险的儿童健康中心相比，有私人或军队/其他保险/自费保险的儿童健康中心生活在机会较高的地区。女性且年龄≥12 岁的幼儿健康新生儿的加时治疗使用率较低。参加言语和/或物理治疗的儿童健康青年的加时治疗使用率较高。随着 SDOH 的增加，加时治疗的使用率也随之增加：有了这些发现，医疗服务提供者在将 CYSHCN 转介到加时治疗服务时，可以考虑包括交通在内的可及性障碍。还需要进一步研究家庭层面的 SDOH 对南卡罗来纳州的 OT 使用情况的影响。

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引用次数: 0

Athlete identity in para-sport: A comparative study of athletes with congenital and acquired disabilities 辅助运动中的运动员身份：先天残疾和后天残疾运动员的比较研究。

IF 3.7 2区医学 Q1 HEALTH CARE SCIENCES & SERVICES

Disability and Health Journal

Pub Date : 2025-01-01 DOI: 10.1016/j.dhjo.2024.101685

Kathryn M. Rougeau PhD , Stephen R. Koziel MPH , Angelina M. Gjorgjevski MPH , Joshua L. Joines BA

Background

Identity development explores how individuals perceive themselves based on their life experiences, including their current self and aspirations. Athlete Identity has been studied using a 4-factor framework across various sports and ability groups. However, there is limited research on how individuals with physical disabilities perceive themselves as athletes and how an acquired disability impacts identity compared to a congenital disability.

Objective

To test the validity of the 4-Factor Model of Athlete Identity and to determine if athletic identity differs between para-athletes who have congenital versus acquired disabilities.

Methods

Secondary analysis of cross-sectional data from the National Wheelchair Basketball Association. Participants consisted of 408 individuals (8 years and older) who play wheelchair basketball (n = 315 male; 29.13 ± 13.89 yrs; M ± SD) who responded to a brief online questionnaire including basic demographics and the 10-item Athlete Identity Measurement Scale (AIMS).

Results

No significant differences in total AIMS scores were found between participants with congenital disabilities and participants with acquired disabilities. Age was a significant covariate. Eigenvalue analysis of the AIMS scores shows that 2 factors describe this population of athletes.

Conclusions

Disability acquisition is not associated with total AIMS scores. Athletic identity is weaker in older participants suggesting a more inclusive self-schema as one ages. The 4-factor model of Athletic Identity is not applicable in this population. Continued research into the intersection of athlete and disability identity is warranted.

Abstract presented

North American Society for the Psychology of Sport and Physical Activity, 2019.

背景：身份发展探讨的是个人如何根据其生活经历（包括当前的自我和愿望）来认识自己。在各种体育运动和能力组别中，运动员身份认同已使用 4 要素框架进行了研究。然而，关于肢体残疾人如何看待自己作为运动员的身份，以及与先天残疾相比，后天残疾如何影响身份认同的研究十分有限：测试运动员身份认同 4 要素模型的有效性，并确定先天残疾与后天残疾的准运动员之间的运动员身份认同是否存在差异：对全国轮椅篮球协会的横截面数据进行二次分析。参与者包括 408 名轮椅篮球运动员（8 岁及以上）（n = 315 名男性；29.13 ± 13.89 岁；M ± SD），他们回答了一份简短的在线问卷，其中包括基本人口统计数据和 10 项运动员身份测量量表（AIMS）：先天残疾的参与者与后天残疾的参与者在 AIMS 总分上没有明显差异。年龄是一个重要的协变量。AIMS 分数的特征值分析表明，有 2 个因子可以描述这一运动员群体：结论：后天残疾与 AIMS 总分无关。年长参与者的运动认同感较弱，这表明随着年龄的增长，自我模式更具包容性。运动认同的 4 因子模型不适用于这一人群。有必要继续研究运动员和残疾人身份认同的交叉点：北美运动与体育活动心理学学会，2019 年。

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引用次数: 0

Utilization of special services among children and youth with special healthcare needs: A time-to-event analysis of the national survey of children's health data, 2016–2022 有特殊医疗保健需求的儿童和青少年对特殊服务的利用情况：2016-2022 年全国儿童健康数据调查的时间到事件分析。

IF 3.7 2区医学 Q1 HEALTH CARE SCIENCES & SERVICES

Disability and Health Journal

Pub Date : 2025-01-01 DOI: 10.1016/j.dhjo.2024.101688

Suman Kanti Chowdhury MIH, CPH-Provisional , Jennifer Marshall PhD, MPH, CPH , Janice Zgibor RPh, PhD, CPH, FACE , Russell S. Kirby PhD, MS, FACE

Background

Special services including physical, occupational, speech, or behavioral therapies are associated with enhanced long-term functioning and well-being of children and youth with special healthcare needs (CYSHCN). Yet, there is a lack of recent evidence on the utilization of these services, and the age at which CYSHCN first receive them.

Objective

This study assessed the distribution, timing, and determinants of special services utilization across different types of special healthcare needs.

Methods

Data from 63,734 caregivers of CYSHCN aged 0–17 years from the 2016–2022 National Survey of Children's Health were analyzed using Rao-Scott Chi-Square, Log-rank, and Cox proportional hazard tests.

Results

Overall, 41.9 % of CYSHCN ever received special services, including 91.4 %, 90.3 %, 88.0, and 34.1 % of children and youth with Down syndrome, cerebral palsy, autism, and other special healthcare needs (OSHCN), respectively. Children with Down syndrome and cerebral palsy received special services earlier than those with autism or OSHCN. Utilization of special services was higher among male children and youth (aHR 1.41; 95 % CI: 1.33–1.49), aged 0–5 years (aHR: 4.70; 95 % CI: 4.32–5.11), second or later born children (aHR: 1.18; 95 % CI: 1.10–1.26), from families with low-income (aHR: 1.14; 95 % CI: 1.04–1.24), living with married parents (aHR: 1.11; 95 % CI: 1.04–1.19), consistently insured (aHR: 1.24; 95 % CI: 1.08–1.42), and with a more complex health condition (aHR: 3.40; 95 % CI: 3.13–3.70) compared to their counterparts.

Conclusions

These findings highlight the necessity of adopting tailored approaches for children with different special healthcare needs to optimize and sustain the utilization of special services.

背景：包括物理、职业、言语或行为治疗在内的特殊服务与有特殊医疗保健需求的儿童和青少年（CYSHCN）的长期功能和福祉的提高息息相关。然而，关于这些服务的使用情况以及有特殊医疗需求的儿童和青少年首次接受这些服务的年龄，目前还缺乏最新的证据：本研究评估了不同类型有特殊医疗保健需求的儿童使用特殊服务的分布、时间和决定因素：采用 Rao-Scott Chi-Square 检验、Log-rank 检验和 Cox 比例危险检验分析了 2016-2022 年全国儿童健康调查中 63734 名 0-17 岁 CYSHCN 照料者的数据：总体而言，41.9%的CYSHCN曾经接受过特殊服务，其中患有唐氏综合征、脑瘫、自闭症和其他特殊医疗需求（OSHCN）的儿童和青少年分别占91.4%、90.3%、88.0%和34.1%。患有唐氏综合症和大脑性麻痹的儿童接受特殊服务的时间早于患有自闭症或有其他特殊医疗保健需求的儿童和青少年。男性儿童和青少年（aHR：1.41；95 % CI：1.33-1.49）、0-5 岁儿童（aHR：4.70；95 % CI：4.32-5.11）、第二胎或晚生儿童（aHR：1.18；95 % CI：1.10-1.26）、低收入家庭儿童（aHR：1.14；95 % CI：1.04-1.24）、与已婚父母同住（aHR：1.11；95 % CI：1.04-1.19）、持续投保（aHR：1.24；95 % CI：1.08-1.42）、健康状况更复杂（aHR：3.40；95 % CI：3.13-3.70）：这些研究结果突出表明，有必要为有不同特殊医疗保健需求的儿童采取量身定制的方法，以优化和维持特殊服务的利用率。

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引用次数: 0

Adverse childhood experiences among deaf and hard-of-hearing adults 成年聋人和重听者的不良童年经历。

IF 3.7 2区医学 Q1 HEALTH CARE SCIENCES & SERVICES

Disability and Health Journal

Pub Date : 2025-01-01 DOI: 10.1016/j.dhjo.2024.101711

Jamie Egbert MPH

Background

The adverse childhood experiences (ACEs) screening tool is a research measure that has not been frequently employed within the scientific literature addressing deaf and hard-of-hearing (DHH) populations.

Objective

To evaluate whether those who are DHH are more likely to cross-sectionally report a high-risk number of ACEs than those who are not DHH.

Methods

Data consisting of a weighted total of n = 24,797,770 US adults’ responses to the 2021 BRFSS survey were utilized for this study.

Results

The DHH-ACE association was effect modified by age group. In the 25-to-34 (aOR = 2.98; 95 % aOR CI: 1.81, 4.92; P < 0.0001), 35-to-44 (aOR = 3.17; 95 % aOR CI: 1.98, 5.08; P < 0.0001), 45-to-54 (aOR = 1.74; 95 % aOR CI: 1.23, 2.45; P = 0.0016), and 55-to-64-year-old (aOR = 1.85; 95 % aOR CI: 1.41, 2.42; P < 0.0001) age groups, those who are DHH were significantly more likely than their same-age hearing peers to report a high-risk number of ACEs. The findings for the 18–24 years and 65+ age groups were not statistically significant.

Conclusion

The results of this study highlight the need for trauma-informed care and improved early intervention and ACEs screenings for the DHH population.

背景：童年不良经历（ACEs）筛查工具是一项研究措施，但在针对聋人和重听者（DHH）群体的科学文献中，该工具并未被频繁使用：评估聋人和重听人是否比非聋人和重听人更有可能横向报告高风险的 ACEs：本研究采用了 2021 年 BRFSS 调查中 n = 24,797,770 位美国成年人的加权数据：结果：DHH与ACE的关系因年龄组而异。在 25-34 岁年龄组中（aOR = 2.98；95 % aOR CI：1.81，4.92；P 结论：本研究的结果突出表明，有必要加强对 DHH-ACE 相关性的研究：本研究结果突出表明，有必要为 DHH 群体提供创伤知情护理，并改善早期干预和 ACEs 筛查。

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引用次数: 0

Does the PedsQL reflect the real-time quality of life in autistic adolescents? A comparison with the experience sampling methodology PedsQL 是否反映了自闭症青少年的实时生活质量？与经验取样法的比较。

IF 3.7 2区医学 Q1 HEALTH CARE SCIENCES & SERVICES

Disability and Health Journal

Pub Date : 2025-01-01 DOI: 10.1016/j.dhjo.2024.101690

Hui-Jen Shyu MS , Yu-Wei Ryan Chen PhD , Daphne Yih Ng MS , Anita Bundy ScD , Mei-Hui Tseng ScD , Reinie Cordier PhD

Background

The PedsQL is widely used to retrospectively evaluate quality of life (QoL) in autistic adolescents. However, concerns have arisen regarding its ability to reflect real-time QoL, considering their challenges in recollecting past experiences.

Objective

We examined the overall and social QoLs of autistic adolescents compared to neurotypical peers using the PedsQL and the experience sampling method (ESM), an ecological momentary assessment of QoL in real-time. Additionally, we explored the relationship between these measures in each group.

Methods

A total of 175 participants, including 117 autistic and 58 neurotypical adolescents aged 10–16, completed the PedsQL and an ESM protocol with a mobile device to record their real-time experiences seven times a day for seven days. We performed multiple linear regression and multilevel analyses to compare QoLs between groups and the association between the two measures.

Results

Autistic adolescents scored significantly lower than neurotypical peers on PedsQL overall and social QoL but not on the real-time experiences collected with ESM. Among neurotypical adolescents, we found significant associations between the Social Functioning score of the PedsQL and various aspects of real-time social experiences recorded with ESM. For autistic adolescents, only the real-time experience of 'loneliness' during social engagement was associated with Social Functioning on the PedsQL.

Conclusions

The retrospective PedsQL does not entirely capture the real-time QoL via ESM. However, relying solely on ESM may overlook situations where participants opt out or could not complete surveys. Thus, using both retrospective and real-time assessments to examine QoL among autistic adolescents is recommended.

背景：PedsQL 被广泛用于回顾性评估自闭症青少年的生活质量（QoL）。然而，考虑到自闭症青少年在回忆过去经历方面存在的困难，人们对其反映实时生活质量的能力产生了担忧：我们使用儿童生活质量量表（PedsQL）和经验取样法（ESM）（一种实时质量量表的生态瞬间评估方法）对自闭症青少年的整体质量量表和社交质量量表进行了研究，并与神经畸形同龄人进行了比较。此外，我们还探讨了各组中这些测量指标之间的关系：共有 175 名参与者（包括 117 名自闭症青少年和 58 名神经畸形青少年，年龄在 10-16 岁之间）使用移动设备完成了 PedsQL 和 ESM 协议，以记录他们在 7 天内每天 7 次的实时体验。我们进行了多元线性回归和多层次分析，以比较各组之间的 QoLs 以及两种测量方法之间的关联：自闭症青少年在 PedsQL 总体评分和社交 QoL 方面的得分明显低于神经畸形青少年，但在使用 ESM 收集的实时体验方面的得分却不明显低于神经畸形青少年。在神经畸形青少年中，我们发现 PedsQL 的社交功能得分与 ESM 记录的实时社交体验的各个方面之间存在显著关联。对于自闭症青少年，只有在社交活动中的 "孤独 "实时体验与 PedsQL 的社会功能相关：结论：回顾性儿童生活质量量表并不能完全反映ESM记录的实时生活质量。然而，仅仅依靠 ESM 可能会忽略参与者选择退出或无法完成调查的情况。因此，建议同时使用回顾性和实时评估来研究自闭症青少年的 QoL。

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引用次数: 0

Research ethics for all: Development of a social-behavioral research ethics education program for community research partners with developmental disabilities 全民研究伦理：为有发育障碍的社区研究伙伴制定社会行为研究伦理教育计划。

IF 3.7 2区医学 Q1 HEALTH CARE SCIENCES & SERVICES

Disability and Health Journal

Pub Date : 2025-01-01 DOI: 10.1016/j.dhjo.2024.101675

Ariel E. Schwartz PhD, OTR/L , Katherine McDonald PhD

Background

People with developmental disabilities make important contributions to research. However, inaccessible research ethics trainings present a barrier to them taking on some research roles.

Objectives

We developed a social-behavioral research ethics training that leads to certification tailored to the accessibility needs and roles of community research partners with developmental disabilities.

Methods

We collaborated with diverse partners (people with developmental disabilities, a disability service provider, health researchers, human research participant protections experts) to develop the research ethics training. To identify potential training content, we conducted a rapid scoping review of ethical, legal, and social issues in social-behavioral research with adults with developmental disabilities and reviewed national research ethics curricula. Through discussions and a modified Delphi process, we worked with partners to identify content to teach; partners also provided guidance on accessibility.

Results

The training and rapid scoping reviews and input from partners resulted in 93 potential educational content elements to include. After completing the modified Delphi process, partners recommended inclusion of 83 of these content elements in the educational training and provided input on depth and approach to teaching this content. Research Ethics for All is a freely available training that includes 5 units, delivered via didactic and active learning, and assessment activities to verify understanding. Research Ethics for All should be facilitated by an experienced researcher.

Conclusions

Research Ethics for All includes foundational social-behavioral research ethics content designed to support community research partners with developmental disabilities to take on new research responsibilities.

背景：发育障碍人士对研究做出了重要贡献。然而，无障碍研究伦理培训对他们承担某些研究角色构成了障碍：我们开发了一种社会行为研究伦理培训，该培训可根据有发育障碍的社区研究伙伴的无障碍需求和角色进行认证：我们与不同的合作伙伴（发育障碍人士、残疾服务提供者、健康研究人员、人类研究参与者保护专家）合作，共同开发研究伦理培训。为了确定潜在的培训内容，我们对发育障碍成人社会行为研究中的伦理、法律和社会问题进行了快速的范围界定，并审查了国家研究伦理课程。通过讨论和修改后的德尔菲流程，我们与合作伙伴共同确定了教学内容；合作伙伴还就可及性问题提供了指导：通过培训和快速范围界定审查以及合作伙伴提供的意见，我们确定了 93 项潜在的教育内容。在完成修改后的德尔菲流程后，合作伙伴建议将其中 83 项内容纳入教育培训，并就教学内容的深度和方法提供了意见。全民研究伦理 "是一项免费培训，包括 5 个单元，通过授课和主动学习以及评估活动来验证理解程度。全民研究伦理应由经验丰富的研究人员主持：所有人的研究伦理包括社会行为研究伦理的基础内容，旨在支持有发育障碍的社区研究合作伙伴承担新的研究责任。

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引用次数: 0

The role of perceived social support in subjective wellbeing among working-age U.S. adults with and without limitations in activities of daily living 感知到的社会支持在日常生活活动受限和未受限的美国工作年龄成年人的主观幸福感中的作用。

IF 3.7 2区医学 Q1 HEALTH CARE SCIENCES & SERVICES

Disability and Health Journal

Pub Date : 2025-01-01 DOI: 10.1016/j.dhjo.2024.101705

Nastassia Vaitsiakhovich MA , Scott D. Landes PhD , Shannon M. Monnat PhD

Background

Perceived social support may enhance subjective wellbeing (SWB) for adults with activities of daily living (ADL) limitations. However, little is known about how social support may mediate (explain) and/or moderate SWB differences among U.S. working-age adults with versus without ADL limitations.

Objective

This study examines the role of perceived emotional and instrumental support in hedonic, eudaimonic, and evaluative wellbeing among adults with and without ADL limitations.

Methods

Data were from the 2021 National Wellbeing Survey – a national survey of U.S. working-age adults aged 18–64 (N = 3775). We used regression analyses to investigate differences in hedonic, eudaimonic, and evaluative wellbeing between individuals with versus without ADL limitations, as well as the roles of emotional and instrumental social support in explaining observed differences. We used interaction terms to examine whether social support moderated the observed associations.

Results

Adults with ADL limitations reported lower SWB than those without limitations across all three dimensions. Depending on the degree of limitations, the associations between ADL limitations and SWB decreased in magnitude or were no longer statistically significant after accounting for emotional and instrumental support. While both types of support were associated with better SWB among the three ADL groups, those with ADL limitations may benefit less from emotional support on both eudaimonic and evaluative wellbeing than those without limitations.

Conclusions

Lower social support may contribute to worse SWB among adults with ADL limitations. Although this subpopulation may benefit from high social support, improving their SWB may require systemic interventions beyond simply enhancing social support.

背景：对于日常生活能力（ADL）受限的成年人来说，感知到的社会支持可能会提高他们的主观幸福感（SWB）。然而，人们对社会支持如何调解（解释）和/或缓和有与没有日常生活活动限制的美国工作年龄成年人之间的主观幸福感差异知之甚少：本研究探讨了感知到的情感支持和工具性支持在有和没有 ADL 限制的成年人的享乐性、幸福感和评价性福祉中的作用：数据来自 2021 年全国幸福感调查，这是一项针对美国 18-64 岁工作年龄成年人的全国性调查（N = 3775）。我们使用回归分析来研究有 ADL 限制的人和没有 ADL 限制的人在享乐性、幸福感和评价性幸福感方面的差异，以及情感和工具性社会支持在解释观察到的差异方面的作用。我们使用交互项来研究社会支持是否调节了观察到的关联：结果：在所有三个维度上，ADL 受限的成年人的 SWB 均低于无 ADL 受限的成年人。在考虑了情感支持和工具性支持后，ADL 限制与 SWB 之间的关联程度降低或不再具有统计学意义，这取决于限制的程度。虽然在三个ADL群体中，这两种支持都与更好的SWB相关，但与无ADL限制的人相比，有ADL限制的人从情感支持中获得的幸福感和评价性幸福感可能更少：结论：较低的社会支持可能会导致有 ADL 限制的成年人的 SWB 更差。结论：较低的社会支持可能会导致有 ADL 限制的成年人的 SWB 更差。虽然这部分人群可能会从较高的社会支持中受益，但改善他们的 SWB 可能需要系统的干预措施，而不仅仅是加强社会支持。

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引用次数: 0