Disability and Health Journal最新文献

Background

Deaf and hard-of-hearing (DHH) people are at higher risk than their non-DHH counterparts of experiencing adverse birth outcomes. There is a lack of research focusing on social, linguistic, and medical factors related to being DHH which may identify groups of DHH people who experience more inequity.

Objective

Examine difference in prevalence of cesarean and adverse birth outcomes among diverse sub-groups of DHH people.

Methods

We conducted a cross-sectional survey of DHH birthing people in the U.S. who gave birth within the past 10 years. The sample was predominantly white, college educated, and married. We assessed cesarean birth and three adverse birth outcomes: preterm birth, low birthweight, and NICU admission post-delivery. DHH-specific variables were genetic etiology of hearing loss, preferred language (i.e., American Sign Language, English, or bilingual), severity of hearing loss, age of onset of hearing loss, and self-reported quality of perinatal care communication. We estimated prevalence, 95 % confidence intervals, and unadjusted prevalence ratios.

Results

Thirty-one percent of our sample reported a cesarean birth. Overall, there were no significant differences in prevalence across the outcome variables with respect to preferred language, genetic etiology, severity, and age of onset. Poorer perinatal care communication quality was associated with higher prevalence of preterm birth (PR = 2.37) and NICU admission (PR = 1.91).

Conclusions

Our study found no evidence supporting differences in obstetric outcomes among DHH birthing people across medical factors related to deafness. Findings support the important role of communication access for DHH people in healthcare environments.

Narrative Summary

The formation of a patient-reported outcomes registry to provide information about functional changes and pain among adults with cerebral palsy (CP) was identified as a priority to address the gap in knowledge and practice about aging and CP. The Cerebral Palsy Research Network collaborated with consumers, clinicians, and researchers to create an interactive internet platform, MyCP, to host a Community Registry. MyCP also provides educational programming, access to webinars and community forums, and fitness opportunities. The registry hosts surveys on function and pain for adults with CP, which provide cross-sectional and longitudinal data about these important issues. Surveys include previously validated measures with normative values that have been used with other populations and investigator developed questions. Enrollment in the registry is growing but needs to reflect the population of adults with CP, which limits generalizability. Future initiatives involve strategies to increase consumer engagement and enrollment.

Background

Due to the majority of males within the population of persons with spinal cord injuries (SCI), a male-oriented perception of persons with SCI might affect care provision in the way of prioritizing male needs.

Objective

The objective of this cross-sectional study is to describe the patient experience of persons with SCI by gender.

Methods

This study was based on the International Spinal Cord Injury Survey with 12,588 participants from 22 countries. An interval-based patient experience score was attained by partial credit model. Regression analysis was used in exploring the association between patient experience and gender.

Results

Participants reported very good and good patient experience. Respectful treatment was reported by 78 % of participants; clear explanations by 75 %; involvement in decision-making by 71 %; satisfaction with services by 62 %. The average patient experience score was equal among males and females (average: 64, range: 0–100), with the highest score in participants from the USA (78) and the lowest – in Morocco (44). Patient experience score was not associated with gender. Females had lower odds of reporting better decision-making involvement, yet higher odds of better satisfaction. Older participants, with higher household income and better self-rated health, had lower odds of being satisfied.

Conclusion

The majority of persons with SCI rated their experience as good or very good. Females were more likely to report higher satisfaction with services and lower involvement in decision-making. For other patient experience categories and the overall patient experience score, no association with gender was found.

Background

Stroke survivors demonstrate decreased physical activity (PA) and take time to return to participation in everyday life, but the relationship between the two variables is unknown.

Objective

To investigate the correlation and trajectory over time between levels of PA and participation in everyday life in stroke survivors.

Methods

PubMed, Web of Science, Scopus, SPORTDiscus, Rehabilitation&Sport Medicine Source, and PEDro databases were searched from inception to January 2024.

Cross-sectional and prospective studies evaluating both levels of PA and participation in stroke survivors were included.

Two reviewers independently conducted the study selection, data extraction, and quality assessment. Meta-analyses of pooled correlation coefficients were calculated when at least two studies reported a correlation coefficient between the same PA and participation outcomes.

Results

Of 4962 studies identified, 49 were included in the systematic review. Studies were rated high (55%%) or fair (45%) quality. A wide range of monitoring methodologies for assessing PA and participation were found in the 23 prospective studies. Seven studies were included in the meta-analyses, showing a positive moderate correlation between PA time and participation in activities of daily living (n = 148; r = 0.52; P < 0.01; I² = 81%) in participants <6 months post-stroke, and between PA time and the participation in all areas (n = 126; r = 0.44; P < 0.01; I² = 0%) in participants ≥6 months post-stroke. Overall, while PA showed significant improvements over time, participation only showed a tendency.

Conclusion

Despite the heterogeneity, consistent positive associations were found between PA time and participation levels in some areas. Establishing consensus is crucial to reduce heterogeneity and facilitate data pooling.

Background

Evidence suggests that disabled people have worse mental health than non-disabled people, but the degree to which disability contributes to mental health is unclear.

Objective

This paper uses 2021 National Health Interview Survey (NHIS) data to estimate the association between disability and depression and anxiety diagnoses as well as psychological distress among adults.

Methods

We calculated disability population prevalence and mental health diagnoses and associated symptoms among 28,534 NHIS respondents. Logistic regressions estimated the odds of depression or anxiety diagnoses and recent psychological distress, controlling for disability and mental health diagnoses. We measured disability using binary and continuum measures of functional disability with the Washington Group Short Set on Functioning.

Results

Disabled people have significantly greater odds of both depression and anxiety diagnoses compared to non-disabled people. Those with high functional disability have 552 % greater odds of an anxiety diagnosis (95 % CI: 5.61–7.58; p < 0.01) and 697 % greater odds of a depression diagnosis (95 % CI: 6.97–9.12; p < 0.01) compared to those with no functional disability. Similarly, those with any level of functional disability are more likely to have elevated psychological distress in the past 30 days compared to those with no functional disability.

Conclusions

Findings support the idea that mental health is worse for disabled people compared to non-disabled people, with increasing functional disability associated with worse mental health. This suggests that mental health is not being adequately addressed for those with the greatest functional disability. Future work should seek to better understand the systemic causes of disparities.

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

Autistic children can derive numerous benefits from engaging in physical activity (PA), necessitating parental support for active participation. However, parents often lack the foundational knowledge to effectively facilitate PA for their children. Despite the significance of this issue, limited research has explored the outcomes of parent-mediated PA interventions for autistic children.

Objective

The purpose of this study was to examine the attitudes and intentions of parents to include their autistic children in PA after participating in a 12-week PA intervention.

Methods

Employing the Theory of Planned Behavior as a framework, we conducted a descriptive-qualitative investigation. Fifteen parents participated in semi-structured interviews, with the data transcribed and analyzed using thematic line-by-line analysis.

Results

Three themes emerged, elucidating how parents fostered PA opportunities for their autistic children were constructed: (a) Awareness and reinforcement of PA benefits, (b) Keep the momentum going, and (c) From intentions to behaviors.

Conclusions

The study findings indicate a positive impact on parental attitudes and intentions toward engaging in PA with their autistic children after participating in the intervention. his study highlights the significance of parent-mediated interventions in fostering PA for autistic children and suggests avenues for future research and interventions.

Background

Doing any amount of moderate-to-vigorous physical activity yields health benefits. Individuals with mobility disabilities are among the least physically active Americans and limited evidence indicates effective strategies to promote physical activity among this group.

Objective

Examine whether a 16-week virtual intervention program (Workout on Wheels internet intervention, WOWii) increases exercise engagement among mobility impaired individuals.

Methods

Participants recruited through community organizations that provide services to individuals with disabilities. The WOWii program is comprised of 3 core components: 16 weeks of virtual intervention delivery and access to the WOWii website; staff and peer support; an exercise package that included an activity tracker and heart rate monitor, pedal exerciser, and therabands.

Results

Ten people enrolled. Participants demonstrated good program engagement, attending an average of 14.1 ± 2.1 of the 16 virtual meetings and completing an average of 10.6 ± 5.6 weekly activities. Exercise data revealed that participants increased their time spent in aerobic exercise from an average of two days a week performing 32 ± 22 min during week one to an average of five days a week doing 127 ± 143 min in the final WOWii week. Only half continued to exercise over the two months once WOWii virtual meetings ended.

Conclusion

WOWii program delivery successfully promoted increased exercise participation for people with mobility disabilities over the 16 intervention weeks. Future studies should investigate approaches to promote exercise maintenance beyond program delivery.

Background

For over 50 years, federal disability civil rights laws have mandated that patients with disability receive equitable health care. However, disabled patients continue to experience health care disparities.

Objective

To explore physicians’ views, in their own words, about caring for patients with disability.

Methods

Review of responses to open-ended question at the end of a nationally representative survey of 714 outpatient physicians about their experiences caring for adult disabled patients. The open-ended question asked for additional comments participants wanted to share. Only 108 (15.1 %) survey participants provided responses suitable for analysis (e.g., legible, complete thought). All issues reported here reflect comments from ≥5 participants.

Results

Common concerns involved high costs, too little time, insufficient space, inadequate training, and lack of adequate mental health services to care for disabled patients. Many physicians appeared frustrated by legal requirements that they cover accommodation costs. Multiple physicians described as “unfair” having to pay for sign language interpreters, especially since interpreter costs generally exceed reimbursements for patients’ visits. Physicians also commented on high costs and space demands of accessible exam tables, especially for small practices, and on challenges accommodating patients with severe obesity, including concerns that patients with severe obesity could damage their exam tables. Some participants suggested that disabled patients require advocates to get good quality care.

Conclusions

Albeit limited by the small number of responses, these open-ended comments from our nationwide survey of physicians suggest some doctors view certain accessibility requirements as unfair to them or infeasible in their practice environments.

Background

Globally, there are over an estimated one billion people with disability. Research priorities with a focus on diagnosis and treatment of conditions or policy and service initiatives, traditionally decided by researchers, may not align with priorities of those with lived experience of disability.

Objective

To explore and inform disability research for Australia, including perspectives of people with disability.

Methods

As part of a research program, we used Q methodology to explore “what should guide the Australian research agenda?” People with disability, their families, community organizations and researchers were purposively recruited and sorted 25 statements, developed iteratively using data collated from systematic research mapping and a prior consultation process. The sorting grid ranged from −4 to +4, according to “Which topics should guide disability research the least to the most?” Factor analysis revealed four distinct but interrelated participant viewpoints.

Results

52 participants (65 % female, aged 18–65+ years, 37 % people living with disability), sorted the statements. Viewpoint 1 – design and delivery of services across the lifespan. Viewpoint 2 – understanding the diverse experience of those with disability. Viewpoint 3 – designing systems to address impacts of disability for the individual, their families and society. Viewpoint 4 – addressing mental health for those with disability no matter where they live.

Conclusion

These viewpoints focused on design and delivery of services to address the impacts of disabling environments and attitudes on individuals living with impairments, their families and society. The four viewpoints provide a framework for future disability research in consultation with those with lived experience.