Disability and Health Journal最新文献

Background: The importance of undertaking physical activity for functioning of patients with multiple sclerosis (MS) has been repeatedly highlighted. However, the research on the role of physical activity in shaping the quality of life of patients with different disease duration is scarce.

Objective: The aim of this study was to identify the mediating role of physical activity in the relationship between health locus of control (HLoC) and health-related quality of life in MS patients with varying disease duration.

Methods: The study included 339 patients with MS from rehabilitation centers. The Multiple Sclerosis Impact Scale (MSIS-29) was used to measure health-related quality of life, physical activity was assessed by the Godin Leisure Time Exercise Questionnaire (GLTEQ) and the Health Locus of Control Questionnaire was used to measure HLoC.

Results: Physical activity has been shown to be a mediator in the relationship between intrinsic HLoC and health-related quality of life particularly in patients with longer disease duration. Intrinsic HLoC was positively associated with engaging in physical activity, which in turn was positively associated with the physical component of quality of life in patients with longer (indirect effect: β = -0.077, p < 0.05) and moderate (β = -0.040, p < 0.05) duration of illness.

Conclusion: The results highlight the importance of psychological resources for undertaking quality-of-life-related physical activity by MS patients with long disease duration. Particularly important here is the internal HLoC, which promotes physical activity that increases the chance of a high quality of life.

Background: Studies on the emotional well-being of individuals with disabilities during the Covid-19 pandemic focused on the beginning of the pandemic and omitted the experiences of victims with disabilities.

Objective: We compared socio-emotional problems experienced by victims of violence with and without disabilities before and during the Covid-19 pandemic.

Methods: We conducted regression analysis using data from the National Crime Victimization Survey to examine the differences in socio-emotional problems experienced by violent crime victims with and without disabilities before and during the Covid-19 pandemic. We conducted descriptive analyses to explore patterns of receiving victim services.

Results: Male victims without disabilities had lower odds of socio-emotional problems than female and male victims with disabilities before and throughout the pandemic. Female victims with disabilities had higher odds of socio-emotional problems than male victims with disabilities and female victims without disabilities before and during the first year of the pandemic. After the first year of the pandemic, female victims with and without disabilities and male victims with disabilities had no significant differences in their odds of experiencing socio-emotional problems. A higher percentage of victims received services during the pandemic in comparison to these patterns before the pandemic. After the first year of the pandemic, there was a notable increase in the percentage of female victims with and without disabilities and percentage of male victims with disabilities receiving victim services.

Conclusions: Our findings underline the disproportionate effect of the Covid-19 pandemic on socio-emotional well-being of victims with disabilities and especially female victims with disabilities.

Background: The intersection of race/ethnicity with disability is a critical dimension of mental health outcomes in later ages that remains under-investigated.

Objective: We examined the role of race-ethnicity in moderating the associations between functional disabilities and subsequent depression among Americans 51 and older and stratified into the two age-groups of midlife (51-64) and older adults (≥65).

Methods: Using a nationally representative sample of community-dwelling Americans (≥51; n = 7475) in the 2016-2018 Health and Retirement Study, we conducted bivariate and multivariable regression analyses. Racial-ethnic groups included non-Hispanic (NH) Black, Hispanic, and NH White and a binary (0/1) outcome defined subsequent depression in 2018. The total number of difficulties on the Nagi, Lawton, and Katz disability scales represented baseline (2016) functional disabilities with a secondary four-level (no/mild/severe with assistance/severe without assistance) disability indicator incorporated to examine the role of assistance with daily living.

Results: Across age-groups, subsequent depression was significantly more prevalent among NH Whites with functional disabilities compared to counterparts reporting no disabilities. Compared to NH Black and Hispanic counterparts, midlife NH Whites were three times more likely to report subsequent depression with each unit increase in the functional disability score, after adjusting for covariates. However, we observed no such racial-ethnic differences among older adults. Among the 51+ severe with no assistance group, adjusted odds of subsequent depression among NH Whites was 2.5 times higher than minority counterparts.

Conclusion: Health programs and environmental adaptations supporting functional care needs in later ages could be beneficial for improving mental health of adults with disabilities.

Background: Transportation can help improve the health, quality of life, and community integration of people with intellectual and developmental disabilities (IDD). Yet, transportation is one of people with IDD's most common unmet needs.

Objective: The aim of this study was to examine if, and, how, states provide non-medical transportation to people with IDD in their Medicaid HCBS programs.

Methods: Using content analysis and descriptive statistics, this study analyzed fiscal year (FY) 2021 Medicaid HCBS 1915(c) waivers for people with IDD from across the nation to examine how they allocated transportation.

Results: In FY 2021, all 44 states and the District of Columbia with HCBS waivers for people with IDD provided transportation services. Transportation was included either by providing a stand-alone service that exclusively provided transportation, or by being embedded within another service. Transportation was embedded within 896 different HCBS services for people with IDD, most commonly within residential habilitation services (26.70 %), supported employment services (19.44 %), and day habilitation (18.44 %). Thirty-three states (73.33 %) also provided 145 different stand-alone transportation services in their programs for people with IDD, to increase community integration and help people gain access to waiver services. A total of $781.78 million of spending was projected for stand-alone transportation services for 261,109 people with IDD (30.32 % of waiver recipients).

Conclusions: HCBS waivers are an important resource for providing transportation for people with IDD. However, significant variation in how states do so may result in disparities or unmet needs.

Background: Children and adolescents with disabilities (CAD) frequently encounter barriers to participation in physical activity (PA). Schools play a vital role in promoting PA, making it crucial to understand the school-based factors influencing CAD's PA participation.

Objective: This qualitative systematic review and meta-synthesis aims to identify and elucidate the school-based factors influencing PA engagement among this population.

Methods: A comprehensive search across six databases-Web of Science, PsycINFO, Scopus, SPORTDiscus, and Embase, CNKI-was conducted in August 2023, and subsequently updated in April 2024. English or Chinese peer-reviewed journal articles that contained substantial qualitative data regarding school-based factors affecting PA in CAD were included. The methodological quality of included studies was evaluated utilizing the Critical Appraisal Skills Program Qualitative Checklist. Qualitative data were analyzed through thematic synthesis.

Results: A total of 16 studies (12 qualitative studies and 4 mixed-methods studies) were included, all of which were of moderate to high quality. Thematic synthesis identified four major themes: (a) physical environment (provision of facilities, specialized and adapted equipment, space for activities); (b) social environment (peers, school leaders, teachers and other school staff); (c) opportunities for PA (physical education, classroom movement integration, extra-curricular activities); and (d) characteristics of PA (adaption of rules and task difficulty, competition components, diversified activities, fun).

Conclusions: This review reveals the complex interplay of different school-based factors affecting PA participation among CAD. The findings provide valuable insights for educators, policymakers, and health professionals to enhance PA participation in this population.

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.

Background: Children with severe neurological impairment (SNI) are at heightened risk of experiencing medical ableism from clinicians in the pediatric intensive care unit (PICU), where barriers such as time scarcity and heavy workloads limit clinicians' ability to provide personalized care.

Objective: To examine medical ableism and strategies to support PICU clinicians in understanding the lives of children with SNI and their families.

Methods: This US-based, single-center, qualitative study included PICU clinicians identified by the parents/caregivers of a child with SNI. Semi-structured 1:1 60-min interviews about the challenges of caring for children with SNI were conducted virtually. Coded data were extracted, thematically analyzed, and further conceptualized using the Dual Process Theory (DPT) bias reduction framework.

Results: Nineteen PICU clinicians participated. Three major themes emerged: 1) assumptions and misconceptions about children with SNI and their families, 2) barriers to providing personalized care, and 3) clinician-suggested strategies to honor the lives of children with SNI. These themes aligned with the DPT framework. As outlined in the DPT, system 1 "fast thinking" errors occur when quick observations inform decisions (e.g., snap judgments about a child's capabilities). Second, barriers (e.g., insufficient time for meaningful interactions) may prevent clinicians from providing unbiased care. Third, system 2 "slow thinking," where complex decision-making occurs, and can be enhanced through personalization strategies (e.g., viewing visuals of the child at baseline health).

Conclusions: Increasing clinician awareness of their potential implicit biases and utilizing bias reduction strategies to mitigate medical ableism in care are critical areas for future research.

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.