Evaluating a communication aid for return of genetic results in families with hypertrophic cardiomyopathy: A randomized controlled trial

Introduction: Genetic testing for hypertrophic cardiomyopathy (HCM) is considered a key aspect of management. Communication of genetic test results to the proband and their family members, can be a barrier to effective uptake. We hypothesized that a communication aid would facilitate effective communication, and sought to evaluate knowledge and communication of HCM risk to at-risk relatives. Methods: This was a prospective randomized controlled trial. Consecutive HCM patients attending a specialized clinic, who agreed to participate, were randomized to the intervention or current clinical practice. The intervention consisted of a genetic counselor-led appointment, separate to their clinical cardiology review, and guided by a communication booklet which could be written in and taken home. Current clinical practice was defined as the return of the genetic result by a genetic counselor and cardiologist, often as part of a clinical cardiology review. The primary outcome was the ability and confidence of the individual to communicate genetic results to at-risk relatives. Results: The a priori outcome of improved communication amongst HCM families did not show statistically significant differences between the control and intervention group, though the majority of probands in the intervention group achieved fair communication (n=13/22) and had higher genetic knowledge scores than those in the control group (7 +/- 3 versus 6 +/- 3). A total of 29% of at-risk relatives were not informed of a genetic result in their family. Conclusion: Communication amongst HCM families remains challenging, with nearly a third of at-risk relatives not informed of a genetic result. We show a significant gap in the current approach to supporting family communication about genetics.

Effective Communication and Linguistic Clarity: A Study of Construction Management Practices in Anambra State

Researches have shown that effective communication is a challenge for project managers and stakeholders at all levels within an organization. Project managers experience the greatest challenge to set up and regulate communications that support a project overall. This, therefore, makes effective communication and linguistic clarity in construction management practices a sine qua non for achieving the expected results. Although a lot of studies have been carried out on effective communication both within construction management practices and beyond, very few studies have looked at effective communication and linguistic clarity among construction managers in Anambra State. Given the foregoing, there are several things we are not aware of. First, we do not know the types of language and methods of communication that are employed on construction sites in Anambra State. Also, our knowledge is limited to how effective communication aid in enhancing the performance of construction organization in Anambra State. In addition, we are not aware of the challenges confronting effective communication and linguistic clarity in construction organization within the state. Likewise, we do not know what identifiable solutions had been proffered towards language barrier and challenges confronting effective communication and linguistic clarity in construction organization in Anambra State. To attempt to answer the questions raised here, this study aimed at evaluating the place of effective communication and linguistic clarity in construction management practices in Anambra State. The study employed survey research and the use of questionnaires to obtain data for the study. The researchers use a five-point scale to elicit information from the respondents. The results highlight that the use of spoken communication on construction sites in Anambra State will breed an improved professional organizational commitment, minimize accident rates and adopt better safety precautions. It further identified that the use of related words, synonym and antonym as well as easy-to-understand the written form of passing instruction or communications produces high performance, innovation and increase organizational stability and flexibility and improve work quality. The study recommends that hiring a multilingual workforce, getting translated plan or construction documents materials and offering immersive language training programs for the construction workforce will help to eliminate the challenges confronting effective communication and linguistic clarity in the construction organization. It is recognized that, in some ways, this research work would have limitations ranging from geographical and scope coverage limitation as the study focused only on construction management practices in Anambra State, Nigeria which may inevitably introduce limited bias into the survey which could limit the application of the results to geographically dissimilar areas. This study had other limitations such as data limitation in measuring the variables of linguistic methods on construction sites, only seven (7) language methods were identified. Therefore, there may be more variables if the study was extended. Secondly, there was also a methodological limitation due to the sample size as thirty-five (35) questionnaires were administered; also more construction professionals would have been included in the population area but only four (4) respondents group were interviewed due to time and financial constraints.

Indonesia’s Response to Covid-19 Outbreak: Raising Awareness through Community Engagement and Actionable Volunteer Contribution

The world is in the grip of a health crisis due to the unforeseen consequences of the COVID-19 pandemic causing a substantial increase in distress associated with pain, depression, and loss. Indonesia is not handling the epidemic properly at this early stage due to a lack of planning and readiness on the part of the country. The government subsequently established the COVID-19 national task force, a COVID-19 assistance centre that reflects the government's readiness and urgency in dealing with the COVID-19 pandemic. At the national and regional levels, the task force reports directly to the president, organizes and encourages all connected agencies to respond to the COVID-19 crisis. The task force's other responsibility is to raise awareness about COVID-19 to the general public. The study aims to determine how Indonesia's COVID-19 task force volunteers can act as a communication aid for the public as a source of empowerment during the pandemic, as well as to examine risk communication and community engagement. This research uses a qualitative approach using the theory of social support. As a result, this study has identified new volunteering approaches for Indonesia's COVID-19 task force that could act as a support system as well as improvements on their approach on community engagement with the public.

A Word Communication System with Partner Assist for Amyotrophic Lateral Sclerosis Patients in Late Stages

People with severe physical impairment such as amyotrophic lateral sclerosis (ALS) in a completely locked-in state (CLIS) suffer from inability to express their thoughts to others. To solve this problem, many brain-computer interface (BCI) systems have been developed, but they have not proven sufficient for CLIS. In this paper, we propose a word communication system: a BCI with partner assist, in which partners play an active role in helping patients express a word. We report here that five ALS patients in late stages (one in CLIS and four almost in CLIS) succeeded in expressing their own words (in Japanese) in response to wh-questions that could not be answered “yes/no.” Each subject sequentially selected vowels (maximum three) contained in the word that he or she wanted to express, by using a “yes/no” communication aid based on near-infrared spectroscopy. Then, a partner entered the selected vowels into a dictionary with vowel entries, which returned candidate words having those vowels. When there were no appropriate words, the partner changed one vowel and searched again or started over from the beginning. When an appropriate word was selected, it was confirmed by the subject via “yes/no” answers. Two subjects confirmed the selected word six times out of eight (credibility of 91.0% by a statistical measure); two subjects, including the one in CLIS, did so five times out of eight (74.6%); and one subject did so three times out of four (81.3%). We have thus taken the first step toward a practical word communication system for such patients.

A Word Communication System with Partner Assist for Amyotrophic Lateral Sclerosis Patients in Late Stages

People with severe physical impairment such as amyotrophic lateral sclerosis (ALS) in a completely locked-in state (CLIS) suffer from inability to express their thoughts to others. To solve this problem, many brain-computer interface (BCI) systems have been developed, but they have not proven sufficient for CLIS. In this paper, we propose a word communication system: a BCI with partner assist, in which partners play an active role in helping patients express a word. We report here that five ALS patients in late stages (one in CLIS and four almost in CLIS) succeeded in expressing their own words (in Japanese) in response to wh-questions that could not be answered “yes/no.” Each subject sequentially selected vowels (maximum three) contained in the word that he or she wanted to express, by using a “yes/no” communication aid based on near-infrared spectroscopy. Then, a partner entered the selected vowels into a dictionary with vowel entries, which returned candidate words having those vowels. When there were no appropriate words, the partner changed one vowel and searched again or started over from the beginning. When an appropriate word was selected, it was confirmed by the subject via “yes/no” answers. Two subjects confirmed the selected word six times out of eight (credibility of 91.0% by a statistical measure); two subjects, including the one in CLIS, did so five times out of eight (74.6%); and one subject did so three times out of four (81.3%). We have thus taken the first step toward a practical word communication system for such patients.

Book Sharing With AAC Over Telepractice: A Tutorial

Telepractice offers speech-language pathologists (SLPs) increased flexibility to support language development, including emergent literacy in clients with complex communication needs. However, clinicians may feel uncertain how to pair books with augmentative and alternative communication (AAC) over telepractice. Following an overview of telepractice, book sharing, and e-helpers, we describe four practical ways to combine storybooks with AAC online. These include: (a) using accessible books, (b) screen sharing e-books and communication aid, (c) adapting slide shows, and (d) creating asynchronous videos. Finally, we offer suggestions for modeling AAC, prioritizing emotions in storybooks, and tips for clinical supervisors. This topic can direct future researchers and is relevant to practicing clinicians who want to support language development for clients using aided communication systems.