IU Indianapolis ScholarWorks :: Browsing by Subject "Disability"

Browsing by Subject "Disability"

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Accessible autonomous transportation and services: a focus group study
(Taylor & Francis, 2023-08-07) Sivakanthan, Sivashankar; Cooper, Rosemarie; Lopes, Celia; Kulich, Hailee; Deepak, Nikitha; Lee, Chang Dae; Wang, Hongwu; Candiotti, Jorge L; Dicianno, Brad E; Koontz, Alicia; Cooper, Rory A
Purpose: Existing automated vehicle transportation guidelines and regulations have minimal guidance to address the specific needs of people with disabilities. Accessibility should be at the forefront to increase autonomy and independence for people with disabilities. The purpose of this research is to better understand potential facilitators and barriers to using accessible autonomous transportation. Methods: Focus groups were conducted with key stakeholders derived from people with disabilities (n = 5), travel companions/caregivers (n = 5), and transportation experts or designers (n = 11). Results: The themes include describing stakeholder perceptions across all three groups by identified themes: autonomous vehicle assistive technology, autonomy vs automation, cost, infrastructure, safety & liability, design challenges, and potential impact. Conclusion: Specific gaps and needs were identified regarding barriers and facilitators for transportation accessibility and evidence-based guidance. These specific gaps can help to formulate design criteria for the communication between, the interior and exterior of accessible autonomous vehicles.
Acute kidney injury, persistent kidney disease, and post-discharge morbidity and mortality in severe malaria in children: A prospective cohort study
(Elsevier, 2022-02-12) Namazzi, Ruth; Batte, Anthony; Opoka, Robert O.; Bangirana, Paul; Schwaderer, Andrew L.; Berrens, Zachary; Datta, Dibyadyuti; Goings, Michael; Ssenkusu, John M.; Goldstein, Stuart L.; John, Chandy C.; Conroy, Andrea L.; Pediatrics, School of Medicine
Background: Globally, 85% of acute kidney injury (AKI) cases occur in low-and-middle-income countries. There is limited information on persistent kidney disease (acute kidney disease [AKD]) following severe malaria-associated AKI. Methods: Between March 28, 2014, and April 18, 2017, 598 children with severe malaria and 118 community children were enrolled in a two-site prospective cohort study in Uganda and followed up for 12 months. The Kidney Disease: Improving Global Outcomes (KDIGO) criteria were used to define AKI (primary exposure) and AKD at 1-month follow-up (primary outcome). Plasma neutrophil gelatinase-associated lipocalin (NGAL) was assessed as a structural biomarker of AKI. Findings: The prevalence of AKI was 45·3% with 21·5% of children having unresolved AKI at 24 h. AKI was more common in Eastern Uganda. In-hospital mortality increased across AKI stages from 1·8% in children without AKI to 26·5% with Stage 3 AKI (p < 0·0001). Children with a high-risk plasma NGAL test were more likely to have unresolved AKI (OR, 7·00 95% CI 4·16 to 11·76) and die in hospital (OR, 6·02 95% CI 2·83 to 12·81). AKD prevalence was 15·6% at 1-month follow-up with most AKD occurring in Eastern Uganda. Risk factors for AKD included severe/unresolved AKI, blackwater fever, and a high-risk NGAL test (adjusted p < 0·05). Paracetamol use during hospitalization was associated with reduced AKD (p < 0·0001). Survivors with AKD post-AKI had higher post-discharge mortality (17·5%) compared with children without AKD (3·7%). Interpretation: Children with severe malaria-associated AKI are at risk of AKD and post-discharge mortality.
Adverse outcomes and correlates of change in the Short Physical Performance Battery over 36 months in the African American health project
(Oxford University Press, 2008-05) Miller, Douglas K.; Wolinsky, Fredric D.; Andresen, Elena M.; Malstrom, Theodore K.; Miller, J. Philip; Department of Medicine, IU School of Medicine
BACKGROUND: The Short Physical Performance Battery (SPPB) is a well-established measure of lower body physical functioning in older persons but has not been adequately examined in African Americans or younger persons. Moreover, factors associated with changes in SPPB over time have not been reported. METHODS: A representative sample of 998 African Americans (49-65 years old at baseline) living in St. Louis, Missouri were followed for 36 months to examine the predictive validity of SPPB in this population and identify factors associated with changes in SPPB. SPPB was calibrated to this population, ranged from 0 (worst) to 12 (best), and required imputation for about 50% of scores. Adverse outcomes of baseline SPPB included death, nursing home placement, hospitalization, physician visits, incident basic and instrumental activity of daily living disabilities, and functional limitations. Changes in SPPB over 36 months were modeled. RESULTS: Adjusted for appropriate covariates, weighted appropriately, and using propensity scores to address potential selection bias, baseline SPPB scores were associated with all adverse outcomes except physician visits, and were marginally associated with hospitalization. Declines in SPPB scores were associated with low falls efficacy (b = -1.311), perceived income adequacy (-0.121), older age (-0.073 per year), poor vision (-0.754), diabetes mellitus (-0.565), refusal to report household income (1.48), ever had Medicaid insurance (-0.610), obesity (-0.437), hospitalization in the prior year (-0.521), and kidney disease (-.956). CONCLUSIONS: The effect of baseline SPPB on adverse outcomes in this late middle-age African American population confirms reports involving older, primarily white participants. Alleviating deterioration in lower body physical functioning guided by the associated covariates may avoid or delay multiple age-associated adverse outcomes.
Barriers to Upper Extremity Reconstruction for Patients With Cerebral Palsy
(Sage, 2022) Loewenstein, Scott N.; Angulo-Parker, Francisco; Timsina, Lava; Adkinson, Joshua; Surgery, School of Medicine
Background: Reconstructive surgery for upper extremity manifestations of cerebral palsy (CP) has been demonstrated to be safe and effective, yet many potential candidates are never evaluated for surgery. The purpose of this study was to determine barriers to upper extremity reconstruction for patients with CP in a cohort of upper extremity surgeons and nonsurgeons. Methods: We sent a questionnaire to 4167 surgeons and nonsurgeon physicians, aggregated responses, and analyzed for differences in perceptions regarding surgical efficacy, patient candidacy for surgery, compliance with rehabilitation, remuneration, complexity of care, and physician comfort providing care. Results: Surgeons and nonsurgeons did not agree on the literature support of surgical efficacy (73% vs 35% agree or strongly agree, respectively). Both surgeons and nonsurgeons felt that many potential candidates exist, yet there was variability in their confidence in identifying them. Most surgeons (59%) and nonsurgeons (61%) felt comfortable performing surgery and directing the associated rehabilitation, respectively. Neither group reported that patient compliance, access to rehabilitation services, and available financial resources were a major barrier, but surgeons were more likely than nonsurgeons to feel that remuneration for services was inadequate (37% vs 13%). Both groups agreed that surgical treatments are complex and should be performed in the setting of a multidisciplinary team. Conclusions: Surgeons and nonsurgeons differ in their views regarding upper extremity reconstructive surgery for CP. Barriers to reconstruction may be addressed by performing higher level research, implementing multispecialty educational outreach, developing objective referral criteria, increasing surgical remuneration, improving access to trained upper extremity surgeons, and implementing multidisciplinary CP clinics.
Clinical Characteristics and Factors Associated With Disability and Impaired Quality of Life in Children With Juvenile Systemic Sclerosis: Results From the Childhood Arthritis and Rheumatology Research Alliance Legacy Registry
(Wiley, 2018-02-18) Stevens, Brandi E.; Torok, Kathryn S.; Li, Suzanne C.; Hershey, Nicole; Curran, Megan; Higgins, Gloria C.; Moore, Katharine F.; Rabinovich, C. Egla; Dodson, Samuel; Stevens, Anne M.; Pediatrics, School of Medicine
OBJECTIVE: To investigate clinical manifestations of juvenile systemic sclerosis (SSc; scleroderma), including disease characteristics and patient quality of life, using the multinational Childhood Arthritis and Rheumatology Research Alliance (CARRA) Legacy Registry. METHODS: Patients with juvenile SSc were prospectively enrolled between 2010 and 2013. The diagnosis of juvenile SSc was determined by the enrolling pediatric rheumatologist, with the requirement for disease onset prior to age 18 years. Collected data included demographics, disease characteristics, medication exposure, and quality of life metrics. RESULTS: In total, 64 patients with juvenile SSc were enrolled a median of 3.6 years after disease onset, which occurred at a median age of 10.3 years. The most common organ manifestations were dermatologic and vascular, followed by musculoskeletal, gastrointestinal, and pulmonary; in 38% of patients, ≥4 organ systems were affected. Patients with juvenile SSc had significantly more disability at enrollment compared with CARRA Legacy Registry patients with juvenile idiopathic arthritis, dermatomyositis, or systemic lupus erythematosus. Although physician-reported measures correlated most closely with arthritis, dermatologic manifestations, and pulmonary manifestations, poor patient-reported measures were associated with gastrointestinal involvement. During >50 person-years of follow-up, most organ manifestations remained stable, and no mortality or development of new solid organ involvement after enrollment was reported. CONCLUSION: In the first multicenter prospective cohort of patients with juvenile SSc in North America, the disease burden was high: multiorgan manifestations were common, and functional disability was greater than that observed in patients with other childhood-onset rheumatic diseases. Gastrointestinal involvement had the greatest impact on quality of life.
Comparison of Common Outcome Measures for Assessing Independence in Patients Diagnosed with Disorders of Consciousness: A Traumatic Brain Injury Model Systems Study
(Mary Ann Liebert, 2022) Snider, Samuel B.; Kowalski, Robert G.; Hammond, Flora M.; Izzy, Saef; Shih, Shirley L.; Rovito, Craig; Edlow, Brian L.; Zafonte, Ross D.; Giacino, Joseph T.; Bodien, Yelena G.; Physical Medicine and Rehabilitation, School of Medicine
Patients with disorders of consciousness (DoC) after traumatic brain injury (TBI) recover to varying degrees of functional dependency. Dependency is difficult to measure but critical for interpreting clinical trial outcomes and prognostic counseling. In participants with DoC (i.e., not following commands) enrolled in the TBI Model Systems National Database (TBIMS NDB), we used the Functional Independence Measure (FIM®) as the reference to evaluate how accurately the Glasgow Outcome Scale-Extended (GOSE) and Disability Rating Scale (DRS) assess dependency. Using the established FIM-dependency cut-point of <80, we measured the classification performance of literature-derived GOSE and DRS cut-points at 1-year post-injury. We compared the area under the receiver operating characteristic curve (AUROC) between the DRSDepend, a DRS-derived marker of dependency, and the data-derived optimal GOSE and DRS cut-points. Of 18,486 TBIMS participants, 1483 met inclusion criteria (mean [standard deviation (SD)] age = 38 [18] years; 76% male). The sensitivity of GOSE cut-points of ≤3 and ≤4 (Lower Severe and Upper Severe Disability, respectively) for identifying FIM-dependency were 97% and 98%, but specificities were 73% and 51%, respectively. The sensitivity of the DRS cut-point of ≥12 (Severe Disability) for identifying FIM-dependency was 60%, but specificity was 100%. The DRSDepend had a sensitivity of 83% and a specificity of 94% for classifying FIM-dependency, with a greater AUROC than the data-derived optimal GOSE (≤3, p = 0.01) and DRS (≥10, p = 0.008) cut-points. Commonly used GOSE and DRS cut-points have limited specificity or sensitivity for identifying functional dependency. The DRSDepend identifies FIM-dependency more accurately than the GOSE and DRS cut-points, but requires further validation.
Creating the Map of Interactive Services Aiding and Assisting Persons With Disabilities (MSAADA) Project: Tutorial for the Novel Use of a Store Locator App
(JMIR, 2022-12-08) Etling, Mary Ann; Musili, Michael; Eastes, Kaytlin; Oyungu, Eren; McHenry, Megan S.; Pediatrics, School of Medicine
Background: An estimated 15% of the global population is living with a disability. In Kenya, children with disabilities remain among the most vulnerable populations, experiencing substantial barriers to wellness and inclusion. Smartphone ownership and internet access have been increasing across sub-Saharan Africa, including in Kenya. Despite these advances, online or mobile resources remain limited and difficult to find and navigate. Objective: This paper aims to describe the novel use of a store locator app to develop an interactive map of organizations that provide medical, educational, and socioeconomic resources to individuals with disabilities in Kenya. The target audience is individuals with disabilities, medical professionals, and organization leaders. Methods: A comprehensive list of organizations, government county offices, educational assessment and resource centers, and institutions was compiled. Organizations were contacted via email, WhatsApp, or in person for semistructured interviews. Based on the services offered, each organization was assigned categorical search tags. The data were entered into a third-party store locator app. The resulting map was inserted into a page on the Academic Model Providing Access to Healthcare (AMPATH) website. Results: The Map of Interactive Services Aiding and Assisting Persons With Disabilities (MSAADA; this abbreviation is also Swahili for "help") was launched in July 2020 in both English and Swahili. The map included 89 organizations across Kenya. Of these, 51 were reached for an interview (for a 57% response rate). Interviewees cited limited paid staff and dependence on grant-based funding as primary challenges to growth and sustainability. Conclusions: MSAADA is an interactive, virtual map that aims to connect individuals with disabilities, medical professionals, and organization leaders to resources in Kenya. The novel use of a store locator app to compile resources in remote settings has the potential to improve access to health care for a wide variety of specialties and patient populations. Innovators in global health should consider the use of store locator apps to connect individuals to resources in regions with limited mapping.
Cross-Cultural Measurement Invariance of a Measure of Disability for White, Black, Hispanic and Asian Older Adults
(MDPI, 2021-02-03) Chan, Keith T.; Algood, Carl; Prifti, Andreana; Zidan, Tarek; School of Social Work
Introduction: This study aims to determine the cross-cultural measurement equivalence of the Washington Group General Measure of Disability for older adults. Materials and methods: This study used the 2012 California Health Interview Survey. The sample included 14,115 non-Hispanic White, Black, Hispanic and Asian adults aged 65 and older. Analysis was conducted using multi-group confirmatory factor analysis (CFA), parallel and Tau-equivalent tests. Results: The results indicated that the measure was valid for use with older adults (Satorra Bentler χ2 = 13.27, df = 3, p = 0.005, GFI = 0.996). Multi-group CFA indicated comparisons were valid between Whites with Blacks, and Hispanics with Asians. Cognitive disability was associated with independent living disability for Whites and Blacks, and with sensory disability for Hispanics and Asians. Conclusions: Findings indicated the measure is valid for cross-cultural comparison for certain racial/ethnic groups. Further research is needed to understand differences in associations of cognitive decline with other areas of disability for older adults.
Current State, Needs, and Opportunities for Wearable Robots in Military Medical Rehabilitation and Force Protection
(MDPI, 2024) Cooper, Rory A.; Smolinski, George; Candiotti, Jorge L.; Satpute, Shantanu; Grindle, Garrett G.; Sparling, Tawnee L.; Nordstrom, Michelle J.; Yuan, Xiaoning; Symsack, Allison; Lee, Chang Dae; Vitiello, Nicola; Knezevic, Steven; Sugar, Thomas G.; Schneider, Urs; Kopp, Verena; Holl, Mirjam; Gaunaurd, Ignacio; Gailey, Robert; Bonato, Paolo; Poropatich, Ron; Adet, David J.; Clemente, Francesco; Abbas, James; Pasquina, Paul F.; Occupational Therapy, School of Health and Human Sciences
Despite advances in wearable robots across various fields, there is no consensus definition or design framework for the application of this technology in rehabilitation or musculoskeletal (MSK) injury prevention. This paper aims to define wearable robots and explore their applications and challenges for military rehabilitation and force protection for MSK injury prevention. We conducted a modified Delphi method, including a steering group and 14 panelists with 10+ years of expertise in wearable robots. Panelists presented current wearable robots currently in use or in development for rehabilitation or assistance use in the military workforce and healthcare. The steering group and panelists met to obtain a consensus on the wearable robot definition applicable for rehabilitation or primary injury prevention. Panelists unanimously agreed that wearable robots can be grouped into three main applications, as follows: (1) primary and secondary MSK injury prevention, (2) enhancement of military activities and tasks, and (3) rehabilitation and reintegration. Each application was presented within the context of its target population and state-of-the-art technology currently in use or under development. Capturing expert opinions, this study defines wearable robots for military rehabilitation and MSK injury prevention, identifies health outcomes and assessment tools, and outlines design requirements for future advancements.
Describing Emerging Adulthood in Individuals with Intellectual Disability Using Photo-Elicitation Methodology
(2022-05) Gano, Laura Ann; Munk, Niki; Berlin, Kathy; Kaushal, Navin; Stanton-Nichols, Kathleen
For adults with intellectual disability life as an adult is more constrained, with fewer opportunities; the literature indicates that intellectual disability negatively impacts people across multiple life domains. Despite this adverse influence, it is largely unknown how those with intellectual disability describe their experiences with adulthood. The current study utilizes photo-elicitation interviewing methodology in an attempt to rectify this deficit. Photo-elicitation research methodology uses images, rather than text, to construct queries and prompt responses. This approach is generally undertaken in disability studies to accommodate participants’ verbal and cognitive challenges, to make abstract concepts concrete, to provide opportunity for meaningful participation, and to empower subjects within the research environment. In this study, photo-elicitation interviewing was employed with a sample of 11 young adults with intellectual disability to discover how adulthood might differ in comparison with typical peers. Participants shared their perceptions of adulthood and experiences related to family, learning/education; community/volunteering/spiritual or faith community/employment/vocation; housing/neighborhood; friends/supportive relationships/personal connections; hobbies/fun; personal health. Results replicate participants’ endorsement of the same broad criteria for adulthood attainment as typified by normative peers in the emerging adulthood literature: acceptance of responsibility for oneself; independent decision-making; financial independence. Salient emergent findings specific to the study population indicated that adulthood differs in comparison with typical peers in relation to (1), advocacy efforts to increase awareness and value of the disability experience; (2), the effect of the COVID-19 pandemic; (3), the need for continued access to support services. Access to services can only be achieved through increasing awareness of this need, recognizing the importance of this need, and prioritizing policy change to meet this need. Participants in this study have indicated that they are more than up to the task of increasing awareness through advocacy, yet it falls to social institutions such as education and government to recognize this need for ongoing support and to prioritize this need by implementing service provision policy change.

Browsing by Subject "Disability"

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