Disability and Health Journal最新文献

Background

Physical activity (PA) is important for overall health and well-being, but adults with intellectual disabilities often struggle to achieve adequate levels of PA. Therefore, it is necessary to understand their PA behaviour.

Objective

To develop a Single-Item Physical Activity Intention Measure (SPAIM) to assess PA intentions of adults with intellectual disabilities and preliminarily analyse its psychometric properties in terms of validity and reliability.

Methods

The study had three phases: developing the SPAIM, assessing its validity and reliability evidence, and conducting a cross-sectional survey to analyse the relationship between PA intentions (measured by SPAIM) and PA levels. Participants were recruited between September 2016 and August 2017 from diverse settings in Oxford, UK, to ensure representation across the intellectual disability spectrum.

Results

There were 82 participants aged 20–68 (mean age 36 ± 13) years who had mild-profound intellectual disabilities. The study provided evidence of content- and response processes-related validity to ensure respondents' understanding. Additionally, test-criterion evidence was provided, showing a predictive correlation between PA intention and sedentary hours/day (12 % of the explained variability). However, there was no correlation between PA intention and PA minutes/week. The study also provided adequate test-retest evidence (r = 0.78).

Conclusions

SPAIM may be a valuable tool for measuring PA intention in adults with intellectual disabilities. Modifying PA intentions could prove crucial in reducing sedentary behaviour and improving the health outcomes of this population. Future research and application of SPAIM in varied contexts will deepen our understanding of PA intentions and explore its predictive characteristics.

Background

In recognition of their status as a health disparities population, there is growing emphasis on conducting research inclusive of adults with intellectual disability to generate new knowledge and opportunities to improve health and equity. Yet they are often excluded from research, and human research participant protection experts and researchers lack agreement on effective consent protocols for their inclusion.

Objective

We sought to identify approaches to consent in US-based social-behavioral research with adults with intellectual disability.

Methods

We conducted a systematic review on approaches to self-consent with adults with intellectual disability published between 2009 and 2023, identified via searching eight databases and reference list hand searches. We identified 13 manuscripts and conducted a thematic analysis.

Results

Our analysis identified themes related to guiding principles, strategies to enhance informed and voluntary consent, approaches to consent capacity, involving individuals subject to guardianship, and strategies for expressing decisions and enhancing ongoing decisions.

Conclusions

Manuscripts largely reflected an emphasis on identifying approaches to consent that reflect disability rights principles to promote the right to be included and make one's own decisions based on assessment of relevant information, risks and benefits, and to employ reasonable modifications to achieve inclusion. To avoid the risks of exclusion and advance the responsible inclusion of adults with intellectual disability, we make recommendations to align consent approaches anchored in contemporary thinking about human research participant protections, including through integration with disability rights.

Background

Individuals with Spinal Cord Injury (SCI) often experience physical deconditioning, leading to long-term health challenges. While regular exercise can offer substantial health benefits, adherence to exercise guidelines among individuals with SCI is hindered by barriers such as inaccessibility. Exercise programs using the mobile application (App) tailored to individual needs present a promising solution for promoting exercise adherence among individuals with SCI.

Objective

This study aimed to identify factors contributing to the successful implementation of an app-based home exercise program for individuals with SCI and gather user feedback on app preferences, functionality, and features.

Methods

Guided by the Consolidated Framework for Implementation Research (CFIR), twenty-six clinicians completed an expert panel survey to rank factors influencing the implementation of an app-based intervention for increasing exercise adherence for individuals with SCI. CFIR-selected factors and app quality features obtained from the Mobile Application Rating Scale (MARS) framework were discussed in seven focus groups with 23 individuals with SCI, 6 caregivers, and 6 clinicians.

Results

The expert survey identified adaptability, complexity, evidence strength/quality, relative advantage, knowledge/beliefs about the initiative, and execution as the key CFIR factors that affected the intervention's success. Major themes emerging from focus groups with individuals with SCI and caregivers included usability, instruction and guidelines, user-friendly interface, and clinician interaction. In contrast, clinicians mentioned themes such as the representation of the SCI population, time commitment, accessibility, and equipment.

Conclusions

The study highlights the significance of incorporating these determinants into future designs to develop app-based home exercise interventions for individuals with SCI.

Social participation is associated with better health, quality of life, physical activity, and engagement in community living and is thus an emerging health priority. Transportation plays an important role in facilitating social participation. Our team recently reported in the Journal of Disability and Health that Missouri-dwelling adults aging with long-term physical disabilities who use paratransit services as their primary transportation mode are more likely to participate in social roles and activities outside the home compared to those who do not use paratransit. In March of 2023, the paratransit company Metro Call-A-Ride that serves St. Louis announced major scale backs to their coverage zones due in part to staffing shortages. This decision has been met with a formal complaint filed to the U.S. Department of Justice as well as protest from the St. Louis disability community and advocates. Thousands of individuals who relied on Call-A-Ride for their routine community outings—to work, grocery stores, or medical appointments, for example—have been affected by the cuts. In this commentary, we will summarize the media coverage this decision has received, including the perspectives of disability rights advocates and individuals who have been directly affected. We will then present an overview of our original research findings in the context of these recent events and a brief synthesis of existing literature on paratransit services in the U.S. The commentary will end with proposed policy, research, and programming solutions for St. Louis's Metro Call-A-Ride and public transportation at large.

Background

Evidence for worsening mental health among individuals with intellectual and developmental disabilities (IDD) during COVID-19 sparked concerns for increased use of psychoactive medications.

Objective

To examine the impact of COVID-19 on psychoactive medication use and clinical monitoring among individuals with IDD in Ontario, Canada.

Methods

We conducted a repeated cross-sectional study among individuals with IDD and examined weekly trends for psychoactive medication dispensing and outpatient physician visits among those prescribed psychoactive medications between April 7, 2019, and March 25, 2023. We used interventional autoregressive integrated moving average models to determine the impact of the declaration of emergency for COVID-19 (March 17, 2020) on the aforementioned trends.

Results

The declaration of emergency for COVID-19 did not significantly impact psychoactive medication use among individuals with IDD. Provision of clinical monitoring remained relatively stable, apart from a short-term decline in the weekly rate of outpatient physician visits following the declaration of emergency for COVID-19 (step estimate: 21.26 per 1000 individuals [p < 0.01]; ramp estimate: 0.88 per 1000 individuals [p = 0.01]). When stratified by mode of delivery, there was a significant shift towards virtual care (step estimate: 78.80 per 1000 individuals; p < 0.01). The weekly rate of in-person physician visits gradually increased, returning to rates observed prior to the COVID-19 pandemic in January 2023.

Conclusion

Although access to clinical care remained relatively stable, the shift towards virtual care may have negatively impacted those who encounter challenges communicating via virtual mediums. Future research is required to identify the support systems necessary for individuals with IDD during virtual health care interactions.

Background

Disability-focused health professions education must evolve to portray the lives of disabled patients, lived experiences of ableism, and disability history more accurately and authentically. Methods of education that utilize first-person perspectives of disabled people to deliver authentic representations are limited in the current literature.

Objective

To explore first-year medical and physician assistant students' reflections on healthcare access, healthcare providers’ roles, and barriers to health equity for patients with disabilities after watching an exemplar, first-person perspective documentary titled Crip Camp: A Disability Revolution.

Methods

A three-part, student-created disability curriculum “Introduction to Disability and Anti-Ableist Healthcare” was offered as an elective for first-year medical students during the 2021–2022 and 2022–2023 academic years. The disability curriculum was required for first-year physician assistant students during the 2023–2024 academic year. One curricular component was watching Crip Camp: A Disability Revolution and completing a 500-750-word reflective essay. Qualitative thematic analysis was used to organize essay responses.

Results

Seven major themes emerged in the students’ essays highlighting the importance of disability-focused education, the necessity of understanding the historical context and mistreatment of people with disabilities, limitations of health policies and health systems, the role of trainees and providers, and intersectionality. Themes were aligned with the socioecological model and disability consciousness to reflect healthcare delivery and education benefit, respectively.

Conclusion

Crip Camp: A Disability Revolution was an effective educational intervention to provide and apply knowledge in reflecting on healthcare experiences of people with disabilities. The themes have implications for health professions education and health care delivery.

Background

Contraception is crucial for reproductive-aged women with disabilities, empowering them to manage reproductive choices and enhancing overall health, autonomy, and well-being.

Objective

The objective of this study was to examine the usage patterns of contraceptive methods among reproductive-aged women with disabilities in Bangladesh.

Methods

We analyzed data from 47,465 reproductive-aged women from the 2019 Bangladesh Multiple Indicator Cluster Survey. Outcome variables included contraceptive usage patterns, grouped into any contraceptive methods, any modern contraceptive methods, and any traditional contraceptive methods. The primary explanatory variable considered was disabilities level (women with no disabilities, women with moderate disabilities, and women with severe disabilities), along with types of disabilities. A multilevel mixed-effects logistic regression model was used to assess associations between outcomes and explanatory variables while accounting for confounding.

Results

The prevalence of any contraceptive methods use was 66.4 %, declining to 54 % among women with severe disabilities. The odd of modern contraception use was 31 % lower (aOR, 0.69, 95 % CI, 0.65–0.73) among women with moderate disabilities and 47 % lower (aOR, 0.53, 95 % CI, 0.47–0.60) among those with severe disabilities, compared to women with no disabilities. Within the individual domains of disabilities, those with vision, walking, cognitive, and self-care-related disabilities reported lower odds of modern contraception uptake than those with no disabilities.

Conclusions

The study highlights that women with disabilities use contraceptives less often, increasing vulnerability to unintended and short interval pregnancies and unsafe abortion. Strengthening family planning and prioritizing women with disabilities for modern contraceptives are vital.

Background

The COVID-19 pandemic has given rise to the emerging phenomenon known as Long COVID, characterized by persistent symptoms long after the acute infection has passed. However, the relationship of Long COVID on housing stability and home accessibility remains underexplored.

Objective

This manuscript aims to comprehensively examine the association of Long COVID on housing stability and accessibility, identifying challenges faced by people with Long COVID and potential strategies to address them.

Methods

The study employs a cross-sectional mixed-methods approach, combining quantitative and qualitative methods. It analyzes data from 1533 people with disabilities, 514 with Long COVID and 1019 without Long COVID, to compare demographics, housing stability, financial concerns, housing problems, and home accessibility. Qualitative analysis extracts thematic insights from 13 participant narratives.

Results

Individuals with Long COVID exhibit significantly higher rates of housing instability (21.1 % v. 8.1 %, p < 0.001) and financial concerns, such as worries about high rent or mortgage (50.4 % v. 40.0 %, p < 0.001), compared to those without Long COVID. They also report more frequent issues with pests (30.0 % v. 23.5 %, p < 0.01) and mold (22.0 % v. 12.7 %, p < 0.001) in their homes. Qualitative analysis reveals financial setbacks, difficulties in obtaining support, and the challenges of home accessibility.

Conclusions

Associations between Long COVID and challenges related to housing stability and home accessibility highlight the need for systemic changes, financial support, and advocacy. This research contributes to understanding Long COVID's challenges, informing policy development, and promoting compassionate responses, ensuring the well-being of people with Long COVID.

Background

A congenital anomaly of the hand can affect both function and appearance, and places a stressful psychological burden on the family, especially parents. Surgery during infancy may prevent later disabilities, but little is known of the importance of parents’ involvement in these decisions in terms of psychological adjustment or treatment satisfaction.

Objective

To understand parents' perceptions of involvement in their child's surgery for limb anomaly, and their preferences for the support of healthcare professionals. Results should lead to recommended interventions to improve familial adjustment to the child's condition.

Methods

Qualitative data was collected from semi-structured confidential self-reported interviews of 35 parents (65.7 % mothers) of children who had received reconstructive surgery for congenital hand anomaly (at age 24.89 ± 9.26 months); interviews were coincident with the 1-month postoperative follow-up. The parents ranged in age, gender, educational background, economic status, and type of anomaly. Data analysis referenced Colaizzi's phenomenological approach.

Results

The concerns of the parents were consolidated into three themes: attitudes toward Parental involvement in surgical decision-making; status of parental involvement in Surgical decision-making; and need for help and support.

Conclusion

Some parents were comfortable leaving surgical decisions entirely to the medical staff, but most preferred active participation and were disappointed at their lack of inclusion. The maximum benefit from surgery for congenital abnormalities in infancy is achieved when the parents and extended families have access to the expertise, skills, encouragement, and psychological support of healthcare providers.