54 research outputs found

    Identifying Medication Management Smartphone App Features Suitable for Young Adults With Developmental Disabilities: Delphi Consensus Study

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    Background: Smartphone apps can be a tool to facilitate independent medication management among persons with developmental disabilities. At present, multiple medication management apps exist in the market, but only 1 has been specifically designed for persons with developmental disabilities. Before initiating further app development targeting this population, input from stakeholders including persons with developmental disabilities, caregivers, and professionals regarding the most preferred features should be obtained. Objective: The aim of this study was to identify medication management app features that are suitable to promote independence in the medication management process by young adults with developmental disabilities using a Delphi consensus method. Methods: A compilation of medication management app features was performed by searching the iTunes App Store, United States, in February 2016, using the following terms: adherence, medication, medication management, medication list, and medication reminder. After identifying features within the retrieved apps, a final list of 42 features grouped into 4 modules (medication list, medication reminder, medication administration record, and additional features) was included in a questionnaire for expert consensus rating. A total of 52 experts in developmental disabilities, including persons with developmental disabilities, caregivers, and professionals, were invited to participate in a 3-round Delphi technique. The purpose was to obtain consensus on features that are preferred and suitable to promote independence in the medication management process among persons with developmental disabilities. Consensus for the first, second, and third rounds was defined as ≄90%, ≄80%, and ≄75% agreement, respectively. Results: A total of 75 responses were received over the 3 Delphi rounds—30 in the first round, 24 in the second round, and 21 in the third round. At the end of the third round, cumulative consensus was achieved for 60% (12/20) items in the medication list module, 100% (3/3) in the medication reminder module, 67% (2/3) in the medication administration record module, and 63% (10/16) in the additional features module. In addition to the medication list, medication reminder, and medication administration record features, experts selected the following top 3 most important additional features: automatic refills through pharmacies; ability to share medication information from the app with providers; and ability to share medication information from the app with family, friends, and caregivers. The top 3 least important features included a link to an official drug information source, privacy settings and password protection, and prescription refill reminders. Conclusions: Although several mobile apps for medication management exist, few are specifically designed to support persons with developmental disabilities in the complex medication management process. Of the 42 different features assessed, 64% (27/42) achieved consensus for inclusion in a future medication management app. This study provides information on the features of a medication management app that are most important to persons with developmental disabilities, caregivers, and professionals

    Use of Reversible Contraceptive Methods Among U.S. Women with Physical or Sensory Disabilities

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    Peer Reviewedhttps://deepblue.lib.umich.edu/bitstream/2027.42/138241/1/psrh12031.pdfhttps://deepblue.lib.umich.edu/bitstream/2027.42/138241/2/psrh12031_am.pd

    How a Diverse Research Ecosystem Has Generated New Rehabilitation Technologies: Review of NIDILRR’s Rehabilitation Engineering Research Centers

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    Over 50 million United States citizens (1 in 6 people in the US) have a developmental, acquired, or degenerative disability. The average US citizen can expect to live 20% of his or her life with a disability. Rehabilitation technologies play a major role in improving the quality of life for people with a disability, yet widespread and highly challenging needs remain. Within the US, a major effort aimed at the creation and evaluation of rehabilitation technology has been the Rehabilitation Engineering Research Centers (RERCs) sponsored by the National Institute on Disability, Independent Living, and Rehabilitation Research. As envisioned at their conception by a panel of the National Academy of Science in 1970, these centers were intended to take a “total approach to rehabilitation”, combining medicine, engineering, and related science, to improve the quality of life of individuals with a disability. Here, we review the scope, achievements, and ongoing projects of an unbiased sample of 19 currently active or recently terminated RERCs. Specifically, for each center, we briefly explain the needs it targets, summarize key historical advances, identify emerging innovations, and consider future directions. Our assessment from this review is that the RERC program indeed involves a multidisciplinary approach, with 36 professional fields involved, although 70% of research and development staff are in engineering fields, 23% in clinical fields, and only 7% in basic science fields; significantly, 11% of the professional staff have a disability related to their research. We observe that the RERC program has substantially diversified the scope of its work since the 1970’s, addressing more types of disabilities using more technologies, and, in particular, often now focusing on information technologies. RERC work also now often views users as integrated into an interdependent society through technologies that both people with and without disabilities co-use (such as the internet, wireless communication, and architecture). In addition, RERC research has evolved to view users as able at improving outcomes through learning, exercise, and plasticity (rather than being static), which can be optimally timed. We provide examples of rehabilitation technology innovation produced by the RERCs that illustrate this increasingly diversifying scope and evolving perspective. We conclude by discussing growth opportunities and possible future directions of the RERC program

    A Ă©tica do silĂȘncio racial no contexto urbano: polĂ­ticas pĂșblicas e desigualdade social no Recife, 1900-1940

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    Mais de meio sĂ©culo apĂłs o preconceito racial ter se tornado o principal alvo dos movimentos urbanos pelos direitos civis nos Estados Unidos e na África do Sul, e dĂ©cadas depois do surgimento dos movimentos negros contemporĂąneos no Brasil, o conjunto de ferramentas legislativas criado no Brasil para promover o direito Ă  cidade ainda adere Ă  longa tradição brasileira de silĂȘncio acerca da questĂŁo racial. Este artigo propĂ”e iniciar uma exploração das raĂ­zes histĂłricas desse fenĂŽmeno, remontando ao surgimento do silĂȘncio sobre a questĂŁo racial na polĂ­tica urbana do Recife, Brasil, durante a primeira metade do sĂ©culo XX. O Recife foi eĂ© um exemplo paradigmĂĄtico do processo pelo qual uma cidade amplamente marcada por traços negros e africanos chegou a ser definida polĂ­tica e legalmente como um espaço pobre, subdesenvolvido e racialmente neutro, onde as desigualdades sociais originaram na exclusĂŁo capitalista, e nĂŁo na escravidĂŁo e nas ideologias do racismo cientĂ­fico. Neste sentido, Recife lança luzes sobre a polĂ­tica urbana que se gerou sob a sombra do silĂȘncio racial.More than half a century after racial prejudice became central to urban civil rights movements in the United States and South Africa, and decades after the emergence of Brazil’s contemporary Black movements, Brazil's internationally recognized body of rights-to-the-city legislation still adheres to the country's long historical tradition of racial silence. This article explores the historical roots of this phenomenon by focusing on the emergence of racial silence in Recife, Brazil during the first half of the 20th Century. Recife was and remains a paradigmatic example of the process through which a city marked by its Black and African roots came to be legally and politically defined as a poor, underdeveloped and racially neutral space, where social inequalities derived from capitalist exclusion rather than from slavery and scientific racism. As such, Recife'sexperience sheds light on the urban policies that were generated in the shadow of racial silence

    Effect of remote ischaemic conditioning on clinical outcomes in patients with acute myocardial infarction (CONDI-2/ERIC-PPCI): a single-blind randomised controlled trial.

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    BACKGROUND: Remote ischaemic conditioning with transient ischaemia and reperfusion applied to the arm has been shown to reduce myocardial infarct size in patients with ST-elevation myocardial infarction (STEMI) undergoing primary percutaneous coronary intervention (PPCI). We investigated whether remote ischaemic conditioning could reduce the incidence of cardiac death and hospitalisation for heart failure at 12 months. METHODS: We did an international investigator-initiated, prospective, single-blind, randomised controlled trial (CONDI-2/ERIC-PPCI) at 33 centres across the UK, Denmark, Spain, and Serbia. Patients (age >18 years) with suspected STEMI and who were eligible for PPCI were randomly allocated (1:1, stratified by centre with a permuted block method) to receive standard treatment (including a sham simulated remote ischaemic conditioning intervention at UK sites only) or remote ischaemic conditioning treatment (intermittent ischaemia and reperfusion applied to the arm through four cycles of 5-min inflation and 5-min deflation of an automated cuff device) before PPCI. Investigators responsible for data collection and outcome assessment were masked to treatment allocation. The primary combined endpoint was cardiac death or hospitalisation for heart failure at 12 months in the intention-to-treat population. This trial is registered with ClinicalTrials.gov (NCT02342522) and is completed. FINDINGS: Between Nov 6, 2013, and March 31, 2018, 5401 patients were randomly allocated to either the control group (n=2701) or the remote ischaemic conditioning group (n=2700). After exclusion of patients upon hospital arrival or loss to follow-up, 2569 patients in the control group and 2546 in the intervention group were included in the intention-to-treat analysis. At 12 months post-PPCI, the Kaplan-Meier-estimated frequencies of cardiac death or hospitalisation for heart failure (the primary endpoint) were 220 (8·6%) patients in the control group and 239 (9·4%) in the remote ischaemic conditioning group (hazard ratio 1·10 [95% CI 0·91-1·32], p=0·32 for intervention versus control). No important unexpected adverse events or side effects of remote ischaemic conditioning were observed. INTERPRETATION: Remote ischaemic conditioning does not improve clinical outcomes (cardiac death or hospitalisation for heart failure) at 12 months in patients with STEMI undergoing PPCI. FUNDING: British Heart Foundation, University College London Hospitals/University College London Biomedical Research Centre, Danish Innovation Foundation, Novo Nordisk Foundation, TrygFonden

    The Influences of partner accuracy and partner memory ability on social false memories

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    In this study, we examined whether increasing the proportion of false information suggested by a confederate would influence the magnitude of socially introduced false memories in the social contagion paradigm Roediger, Meade, & Bergman (Psychonomic Bulletin & Review 8:365–371, 2001). One participant and one confederate collaboratively recalled items from previously studied household scenes. During collaboration, the confederate interjected 0%, 33%, 66%, or 100% false items. On subsequent individual-recall tests across three experiments, participants were just as likely to incorporate misleading suggestions from a partner who was mostly accurate (33 % incorrect) as they were from a partner who was not at all accurate (100% incorrect). Even when participants witnessed firsthand that their partner had a very poor memory on a related memory task, they were still as likely to incorporate the confederate’s entirely misleading suggestions on subsequent recall and recognition tests (Exp. 2). Only when participants witnessed firsthand that their partner had a very poor memory on a practice test of the experimental task itself were they able to reduce false memory, and this reduction occurred selectively on a subsequent individual recognition test (Exp. 3). These data demonstrate that participants do not always consider their partners’ memory ability when working on collaborative memory tasks.14 page(s

    Fear, Isolation, and Invisibility during the COVID-19 Pandemic: A Qualitative Study of Adults with Physical Disabilities in Marginalized Communities in Southeastern Michigan in the United States

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    This study examines the initial impact of the COVID-19 pandemic on adults with physical disabilities from marginalized communities in southeastern Michigan, one of the early pandemic epicenters in the United States. A purposeful sample of fifteen adults with moderate to severe physical disabilities were recruited, taking part in individual remote semi-structured qualitative interviews, which were recorded, transcribed, and coded for emergent themes using a thematic approach to coding and analysis. Three interrelated, overarching themes emerged: fear, feelings of isolation, and a sense of being invisible. These were identified in the contexts of health and healthcare, home care assistance, and access to resources. The findings help illuminate the experiences of those from socioeconomically and racially marginalized communities, populations that are often “always already” vulnerable. Participant narratives made visible the negative impact of the pandemic on physical and mental health as well as the lack of accommodations available. They showed that participants were faced with a dilemma between engaging in risky behavior to have their needs met or avoiding risk and not have those needs met. This knowledge can expand awareness and appreciation of how social, economic, and political systems impact adults with physical disabilities in lower-income and racially diverse communities and provide guidance in designing future clinical and emergency response policies

    Have Almost 50 Years of Disability Civil Rights Laws Achieved Equitable Care?

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    For almost fifty years, federal civil rights laws such as Section 504 of the Rehabilitation Act of 1973, the Americans with Disabilities Act (ADA) of 1990 and the ADA Amendments Act of 2008, and Section 1557 and other provisions of the 2010 Patient Protection and Affordable Care Act have prohibited discrimination against Americans with disabilities, including in health care. Despite these laws, disabled Americans continue to experience disparities in health and health care, from preventive care to home and community-based services. In its 2022 Health Equity Framework for People with Disabilities, the National Council on Disability highlighted some of these disparities and recommended remedies. To explore these concerns, this article examines disability inequities and potential solutions within six areas. It concludes by recommending the ratification of the 2006 United Nations Convention on the Rights of Persons with Disabilities to reinvigorate US efforts to maximize the health and dignity of disabled Americans and support their full participation in the community

    Spotlighting Disability in a Major Electronic Health Record: Michigan Medicine’s Disability and Accommodations Tab

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    People with disabilities represent the largest minority group in the United States and a priority population for health services research. Despite federal civil rights law, people with disabilities face inaccessible health care environments that fail to accommodate their disability. We present Michigan Medicine’s Disability and Accommodations Tab. This patient-facing questionnaire and shared data field in the electronic health record enables the collection and reporting of patient disability-related accommodations. The Disability Tab seeks to address provider- and clinic staff–reported barriers to providing accommodations and fosters an opportunity to redesign health care to meet the needs of people with disabilities
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