scholarly journals Informing Parents about Newborn Screening: A European Comparison Study

2021 ◽  
Vol 7 (1) ◽  
pp. 13
Author(s):  
Amber IJzebrink ◽  
Tessa van Dijk ◽  
Věra Franková ◽  
J. Gerard Loeber ◽  
Viktor Kožich ◽  
...  

Knowledge about newborn screening (NBS) is an important factor for parents to make an informed decision about participation. In Europe, countries inform parents differently about their NBS program, potentially including different knowledge aspects in their information. The aim of this study was to assess twenty-six European parental information products and to analyze their knowledge aspects through a content analysis. The analyzed aspects were compared to a list of eight knowledge aspects from scientific literature. The list includes aspects important for parents’ decision-making, such as the purpose of screening. The study showed that most of the eight knowledge aspects are included in NBS information products of the majority of countries. However, there were differences between countries, for example in the amount of detail and phrasing of the information. Additional relevant knowledge aspects have also been identified and are recommended to optimize information products, such as the handling of residual bloodspot samples. This study only assessed knowledge aspects in information products meant for printing, but many countries also use other communication methods, and the impact on knowledge of the delivery of the information needs further study. Preferences of parents on alternative communication methods need to be considered and evaluated on their effectiveness.

2020 ◽  
Vol 58 (2A(116A)) ◽  
pp. 86-97
Author(s):  
Dorota Rak

Purpose/Thesis: The outbreak of the coronavirus pandemic ‘forced’ the strengthening of the importance of digital space in the daily functioning of individuals. The aim of this article is to try to answer the question of whether COVID-19 contributed in any way to changes in the Information Literacy of a specific type of information user, i.e. members of internet groups in the area of ​​business sharing. Approach/Methods: The above research problem was solved mainly by a questionnaire and a critical analysis of the scientific literature. Results and conclusions: 104 people from 8 groups representing both the Małopolska region as well as the Tri-City, Silesia and Mazovia took part in the pilot study. The questionnaire covered such issues as identifying information needs and obtaining information, evaluating and using information, defining and subjective assessing information competences. As the analysis shows, in the opinion of group users, COVID-19 did not have a significant impact on their information skills, and they themselves assess the level of their competences sufficiently or highly. Originality/Value: The article supplements the existing literature with new research and may be an inspiration for a discussion on a wider group of social media users.


Author(s):  
Talieh Zarifian ◽  
Amin Mahnam ◽  
Atabak Vosoughi

Background and aims: Adults with acquired neurological disorders (stroke, Traumatic Brain Injury ...) develop their verbal communication and literacy capabilities as typical speakers and writers. They use these skills to participate academically, vocationally, recreationally, and socially. Depending upon their neurological condition, they gradually or suddenly lose their speech or language capabilities and are required to rely on Augmentative and Alternative Communication (AAC) systems to meet their communication needs. In addition to the loss of their spoken communication, the impact of their neurological condition on their participation patterns is potentially profound with reduced ability to care for themselves, a reduction or loss of employment, and usually a sudden or gradual restriction of their social networks. AAC is an umbrella term that encompasses the communication methods used to supplement or replace speech or writing for those with impairments in the production or comprehension of spoken or written language. During the past five decades, AAC technologies have been developed to compensate for these natural communication losses.     Stroke is one of the main causes of disability in the world. About 20% of stroke patients experience aphasia, with 20-30% of these individuals exhibiting severe communication deficits for at least a portion of their recovery period. Augmentative and Alternative Communication (AAC) encompasses the communication methods used to supplement or replace speech or writing for those with impairments in the production of spoken or written language.  Specifically designed Human Computer Interfaces (HCI), as an assistive technology, provides new channels of communication for patients with aphasia, dysarthria, and dyspraxia, when accompanied by movement impairments.      In this workshop after stating a science review of the following types of issues: AAC acceptance (individually, culturally); AAC availability; AAC use patterns; AAC limitations are main issues, an AAC technology for post-stroke patients will be presented which developed by a knowledgebase company in Iran. The system allows patients with communication and motor impairment to state their intentions and feelings by a minimum movement in their body, or just by moving their eyes. Different sensors and switches are available to adopt based on the limited ability of the patients. For detecting eye movements, a novel wearable miniaturized system has been developed that is worn as a headband and detects eye movements based on processing electro-oculogram. A high performance graphical user interface has been developed to type letters and numbers in Persian language. The system also provides words prediction, text to speech conversion with natural voice, and sending/receiving messages in the mobile networks for a convenient communication experience. The developed system has been tested successfully by more than 20 patients with different disabilities, and is now commercially available.The proposed system can also help the severely disabled people with amyotrophic lateral sclerosis, quadriplegia, muscular dystrophy or cerebral palsy to communicate with others and mention their intentions, needs and feelings. This low-cost wearable device assures high level of comfort for the user without fatigue and do not need long time training. The system can also be adapted for the patients who can speak, but could not move their hands, to work with the computer and enjoy using the internet.  


2013 ◽  
Vol 18 (2) ◽  
pp. 115-122 ◽  
Author(s):  
Erin Rothwell ◽  
Lauren Clark ◽  
Rebecca Anderson ◽  
Jeffrey R. Botkin

2019 ◽  
Vol 4 (5) ◽  
pp. 1017-1027 ◽  
Author(s):  
Richard R. Hurtig ◽  
Rebecca M. Alper ◽  
Karen N. T. Bryant ◽  
Krista R. Davidson ◽  
Chelsea Bilskemper

Purpose Many hospitalized patients experience barriers to effective patient–provider communication that can negatively impact their care. These barriers include difficulty physically accessing the nurse call system, communicating about pain and other needs, or both. For many patients, these barriers are a result of their admitting condition and not of an underlying chronic disability. Speech-language pathologists have begun to address patients' short-term communication needs with an array of augmentative and alternative communication (AAC) strategies. Method This study used a between-groups experimental design to evaluate the impact of providing patients with AAC systems so that they could summon help and communicate with their nurses. The study examined patients' and nurses' perceptions of the patients' ability to summon help and effectively communicate with caregivers. Results Patients who could summon their nurses and effectively communicate—with or without AAC—had significantly more favorable perceptions than those who could not. Conclusions This study suggests that AAC can be successfully used in acute care settings to help patients overcome access and communication barriers. Working with other members of the health care team is essential to building a “culture of communication” in acute care settings. Supplemental Material https://doi.org/10.23641/asha.9990962


Author(s):  
Gabriel Guízar Sahagún

Besides the well-known loss of motor and sensory capabilities, people with spinal cord injury (SCI) experience a broad range of systemic and metabolic abnormalities including, among others, dysfunction of cardiovascular, respiratory, gastrointestinal, urinary, and endocrine systems. These alterations are a significant challenge for patients with SCI because such disorders severely interfere with their daily living and can be potentially life-threatening. Most of these disorders are associated with impairment of regulation of the autonomic nervous system, arising from disruption of connections between higher brain centers and the spinal cord caudal to the injured zone. Thus, the higher and more complete the lesion, the greater the autonomic dysfunction and the severity of complications.This article summarizes the medical scientific literature on key systemic and metabolic alterations derived of SCI. It provides information primarily focused on the pathophysiology and clinical presentation of these disorders, as well as some guides to prevent and alleviate such complications. Due to the impact of these alterations, this topic must be a priority and diffuse to those involved with the care of people with SCI, including the patient himself/herself. We consider that any collaborative effort should be supported, like the development of international standards, to evaluate autonomic function after SCI, as well as the development of novel therapeutic approaches.


Fermentation ◽  
2021 ◽  
Vol 7 (1) ◽  
pp. 21
Author(s):  
Tinashe Mangwanda ◽  
Joel B. Johnson ◽  
Janice S. Mani ◽  
Steve Jackson ◽  
Shaneel Chandra ◽  
...  

The rum industry is currently worth USD 16 billion, with production concentrated in tropical countries of the Caribbean and Asia-Pacific regions. The primary feedstock for rum production is sugar cane molasses, a by-product of sugar refineries. The main variables known to affect rum quality include the composition of the molasses, the length of fermentation, and the type of barrels and length of time used for aging the rum. The goal of this review is to provide an overview of the impact of these variables on rum quality, and to highlight current challenges and opportunities in the production of rum from molasses. In order to achieve this, we review the relevant contemporary scientific literature on these topics. The major contemporary challenges in the rum production industry include minimising the effects of variability in feedstock quality, ensuring the fermentation process runs to completion, preventing microbial contamination, and the selection and maintenance of yeast strains providing optimum ethanol production. Stringent quality management practices are required to ensure consistency in the quality and organoleptic properties of the rum from batch to batch. Further research is required to fully understand the influences of many of these variables on the final quality of the rum produced.


Diagnosis ◽  
2020 ◽  
Vol 0 (0) ◽  
Author(s):  
Diletta Onorato ◽  
Giovanni Carpenè ◽  
Giuseppe Lippi ◽  
Mairi Pucci

AbstractThe worldwide spread of coronavirus disease 2019 (COVID-19) has generated a global health crisis and more than a million deaths so far. Epidemiological and clinical characteristics of COVID-19 are increasingly reported, along with its potential relationship with overweight and/or obesity. Therefore, we aim here to review the current scientific literature on the impact of overweight and/or obesity among hospitalized patients who have developed severe or critical forms of COVID-19. Following PRISMA guidelines, our literature search identified over 300 scientific articles using the keywords “obesity” and “COVID-19”, 22 of which were finally selected for reporting useful information on the association between overweight/obesity and disease severity. In particular, in 11 out of the 14 studies (79%) which evaluated the association between obesity and disease severity providing also a risk estimate (i.e., the odd ratio; OR), the OR value was constantly >2. Although the studies were found to be heterogeneous in terms of design, population, sample size and endpoints, in most cases a significant association was found between obesity and the risk of progressing to severe COVID-19 illness, intensive care unit admission and/or death. We can hence conclude that an increased body mass index shall be considered a negative prognostic factor in patients with COVID-19, and more aggressive prevention or treatment shall hence be reserved to overweight and/or obese patients.


Author(s):  
Sarah L. McKee ◽  
Eminet Abebe Gurganus ◽  
Abiodun T. Atoloye ◽  
Ran Xu ◽  
Katie Martin ◽  
...  

Abstract Aim This study aimed to assess the impact of the Supporting Wellness at Pantries (SWAP) system on client food selections at a food pantry. Subject and methods In a pre–post comparison study design, a client-choice food pantry implemented SWAP by reorganizing its inventory to promote healthy options. Each product was ranked as “choose often” (green), “sometimes” (yellow), or “rarely” (red) based on saturated fat, sodium, and sugar. Signage was added to indicate each item’s SWAP rank and healthier foods were placed at eye level. Client food baskets were assessed at time 1 (n = 121) and time 2 (n = 101). The proportions of green and red foods selected were compared using regression analyses. Results The regression analyses showed that the proportion of green foods selected by clients increased by 11% (p < 0.001) and the proportion of red foods selected decreased by 7% (p < 0.001) after SWAP was implemented (n = 222). Conclusions SWAP has the potential to positively shift client choices among the items available in a food pantry setting. SWAP is one component of a suite of changes to the charitable food system that have the potential to alleviate food insecurity, improve diet quality, and assist clients in managing diet-related diseases.


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