Understanding the ecosystem of patients with lysosomal storage diseases in Spain: a qualitative research with patients and health care professionals

Background Lysosomal Storage Diseases (LSDs) are a group of Rare Diseases (RDs) caused by lysosomal enzyme deficiencies. Patients with LSDs suffer from a wide range of symptoms with a strong impact in their daily routines. In this study we aimed to explore the impact of the disease on the lives of patients with four LSDs, as well as how they experience Patient Journey from diagnosis to follow up. Unmet Needs (UNs) perceived by patients and clinicians were assessed to have a better understanding of which initiatives could improve LSDs management and especially those that could result in an improvement of patients’ quality of life. Methods Qualitative research was the research methodology selected for the study. It provides plentiful and holistic insights into people’s views and actions. The study was conducted through in-depth face-to-face semi-structured interviews. Results In total, 20 patients and 25 Health Care Professionals (HCPs) from different Spanish regions were interviewed. Patients perceived that the highest impact of the LSDs was on their daily routines, specifically on their emotional side, their work/school environment, their family and their social life. Regarding the Patient Journey experience, the worst perceived stage was the pre-diagnosis, where patients only reported negative perceptions, being the delay in diagnosis and misdiagnosis the most commented issues. On the contrary, the follow-up stage was the one with less negative perceptions. Overall, patients and HCPs agreed on the priority UNs, such as accelerating diagnosis, reducing bureaucracy for the treatment access and a more coordinated attention for the patients, not only among different physicians but also with other professionals such as genetic counselors or social workers. Conclusions Our data shows that there are still UNs to be addressed from the perspective of patients and HCPs. The main UN is accelerating diagnosis, which could be achieved by medical awareness and education, according to clinicians. A more comprehensive disease management was another main point to be worked on to improve LSD-patient experience and quality of life.

The Opportunities and Challenges Associated with the Implementation of Fourth Industrial Revolution Technologies to Manage Health and Safety

The fourth industrial revolution (4iR) technologies offer an opportunity for the construction industry to improve health and safety (H&S) compliance. Therefore, implementing the technologies is of top priority to improve the endless H&S incidents in construction projects, which lead to poor quality of work, late project delivery, and increased labour injury claims. Central to improving the nature of work and other industrial processes, the 4iR technologies have emerged. Concurrent with this trend is the importance of 4iR technologies in enhancing health and safety performance on construction sites. However, the implementation of 4iR technologies in the construction industry is faced with various challenges. Therefore, this paper reports on a study aimed at examining the challenges associated with implementing 4iR technologies in the construction sector in South Africa towards effective management of H&S. The study followed a systematic literature review, data collection using a questionnaire survey and thereafter, descriptive, and inferential analyses were conducted. The findings revealed that the implementation of 4iR technologies is challenged by a lack of adequate relevant skills, the unavailability of training capacities, expensive technologies, and negative perceptions such as fear of job loss by industry professionals. The findings are essential for the advancement of H&S research and implementation. In addition, the findings are important to industry decision-makers in order to elevate their awareness and promote the use of 4iR technologies to manage construction activities. The study implications include the need for the construction industry to collaborate with higher education institutions to conduct research and include 4iR in the curriculum.

Innovation and borrower discouragement in SMEs

In this paper, we investigate whether innovative small- and medium-sized enterprises (SMEs) are more likely to be discouraged from applying for external finance than non-innovators. These so-called discouraged borrowers are credit worthy SMEs who choose not to apply for external finance despite the fact that this is needed. We find that SMEs undertaking pure product and joint product and process innovation have a significantly higher incidence of borrower discouragement than non-innovative counterparts. Moreover, radical and incremental product innovators are more likely to be discouraged relative to non-innovative counterparts. Innovative activity can increase borrower discouragement for a myriad of reasons including fear of rejection, reluctance to take on additional risk, negative perceptions of the funding application process and perceived negative economic conditions. Overall, our results suggest a need for targeted policy interventions in order to alleviate borrower discouragement within innovative SMEs, as well as a closer alignment between innovation and SME finance policy.

The impact of social shopping feature richness on buying intention: a product perspective

PurposeSocial shopping platforms have flourished by using multiple social shopping features, yet little is known about how the combination of these features affects purchase intention, particularly in terms of the product itself. The purpose of the paper is to draw on the concept of social shopping feature richness, adopting a formative approach on the survey used, and endeavors to reveal the concept's impact on consumers' buying intention from a product perspective.Design/methodology/approachBuilding on mental accounting and signaling theories, a theoretical model is proposed and empirically evaluated with 356 samples collected using a questionnaire survey.FindingsThe results suggest that social shopping feature richness promotes consumers' consumption by providing information signals to satisfy acquisition utility and transaction utility. Specifically, social shopping feature richness enhances perceived product quality, while decreasing negative perceptions regarding price. Moreover, perceived product quality and perceived price significantly influence buying intention through the mechanism of perceived value.Originality/valueThe authors' study highlights the role of the combination of functionally diverse social shopping features on product sales for social shopping platforms.

Artificial Intelligent Technologies for the Construction Industry: How Are They Perceived and Utilized in Australia?

Artificial intelligence (AI) is a powerful technology that can be utilized throughout a construction project lifecycle. Transition to incorporate AI technologies in the construction industry has been delayed due to the lack of know-how and research. There is also a knowledge gap regarding how the public perceives AI technologies, their areas of application, prospects, and constraints in the construction industry. This study aims to explore AI technology adoption prospects and constraints in the Australian construction industry by analyzing social media data. This study adopted social media analytics, along with sentiment and content analyses of Twitter messages (n = 7906), as the methodological approach. The results revealed that: (a) robotics, internet-of-things, and machine learning are the most popular AI technologies in Australia; (b) Australian public sentiments toward AI are mostly positive, whilst some negative perceptions exist; (c) there are distinctive views on the opportunities and constraints of AI among the Australian states/territories; (d) timesaving, innovation, and digitalization are the most common AI prospects; and (e) project risk, security of data, and lack of capabilities are the most common AI constraints. This study is the first to explore AI technology adoption prospects and constraints in the Australian construction industry by analyzing social media data. The findings inform the construction industry on public perceptions and prospects and constraints of AI adoption. In addition, it advocates the search for finding the most efficient means to utilize AI technologies. The study helps public perceptions and prospects and constraints of AI adoption to be factored in construction industry technology adoption.

Stigma and Misconceptions of Poverty Reduction

This chapter examines the notions of stigma, bias, and myth of poverty reduction and focuses specifically on rural poor populations in nations that fell behind in implementing the global targets of poverty reduction, the majority of them in Sub-Saharan Africa. The task is to examine various characterizations of myth and stigma in historical discourse and explain the processes and mechanisms by which myth and stigma function as a mediator of various tensions within historical discourse. First, this chapter describes the characterizations of stigma and the misconceptions of poverty; second, it explains the barriers and the daunting task of poverty reduction; and third, it shows how negative perceptions of poverty ultimately complicate the implementation of the poverty reduction agenda.

Graduate Development Program as Interventional Strategy for Talent Management

Organizations have recognized the need to have a workforce that can give the company direction and help it adapt to continuous market changes. Many organizations have taken note of this ever-changing competitive market and implemented the Graduate Development Program (GDP) to ensure the development and consistent supply of its talent pool. Adopting a qualitative research design with research instruments that allow interaction with all key stakeholders, the objective of this paper is to assess GDP as an interventional strategy for talent management, in the context of Namibia. The study findings are mixed as it shows that current and past employees feel that the GDP implementation is not effective due to their negative perceptions about the identification of outside talent and yet the findings did reveal that the GDP has resulted in improved talent sets and an enabling environment to recruit, develop and retain staff in critical positions.

Confidence to manage menstruation among university students in Australia: Evidence from a cross-sectional survey

Objectives: There has been increased attention to university students’ experiences of menstrual disorders, and access to menstrual products, in high-income countries. Less attention has been directed to other aspects of their menstrual experience, including confidence for menstrual management. This study aimed to understand the factors affecting university students’ confidence to manage menstruation at university. Methods: An online survey was completed by 410 participants (age range: 16–46 years, mean = 20.1 years) who menstruate and study at an Australian university. Participants reported demographic characteristics, confidence to manage menstruation at university, and personal, physical and environmental factors. A Mann–Whitney U-test analysed differences in confidence between groups of students. Pearson’s correlation coefficient and bivariate linear regressions determined associations between factors and confidence. Statistically significant associations were inputted into a multiple linear regression model. P-values less than 0.05 were considered significant. Results: A minority of students (16.2%) felt completely confident to manage their menstruation at university. Menstrual knowledge, positive perceptions of menstruation and comfort to discuss menstruation with others positively predicted confidence. Physical menstrual symptoms, negative perceptions of menstruation, perceived stigma and using a menstrual cup or period underwear predicted lower confidence. In multiple regression, private and clean and sanitary university bathroom facilities, changing menstrual products at university, perceived stigma and negative perceptions of menstruation remained significant predictors. Conclusion: Most students did not have complete confidence to manage their menstruation at university. Several personal, physical and environmental factors were related to students’ confidence to manage menstruation. Assessment of these factors in future research with university students is recommended to enable a comprehensive understanding of their menstrual needs, and inform interventions aimed at improving their menstrual management confidence at university.

Quizizz As Interactive and Gamified Assessment Platform: Voices form Indonesian EFL Secondary Learners

<p>Almost every aspect of human life on earth has been disrupted since the emergence of Covid-19, particularly education. Many countries have decided to close schools and universities. This condition has forced the Indonesian government through its Ministry of Education to implement policies moving conventional classrooms to be online classrooms. This process is carried out to maintain the health of students to avoid Covid-19. The learning process can be helped by using one of the applications on the internet which is called Student Response System (SRS). According to the statement, the researcher investigated secondary school students’ perceptions towards the implementation of Quizizz as an assessment platform in teaching English. Mixed-method research has been implemented in this study. The study involved 61 students as the participants in quantitative stage and 6 students in qualitative stage. The main instruments employed in this research are an online questionnaire and in-depth interview. The findings indicated that the students have both positive and negative perceptions toward the use of online assessment, especially in Quizizz. The students enjoyed Quizizz and thought it was exciting, interesting, motivating, and enjoyable because the Quizizz platform was distinct from the others. Quizizz had an interactive display, which made it simple for students to use the platform. However, in addition to the positive perception of Quizizz as an assessment platform in English teaching, some students expressed a negative perception of Quizizz as an assessment. According to the data, one of the platform's negative perceptions was the presence of music</p><p class="abstrak"><em>Hampir setiap aspek kehidupan manusia di muka bumi ini terganggu sejak munculnya Covid-19, khususnya pendidikan. Banyak negara telah memutuskan untuk menutup sekolah dan universitas. Kondisi ini memaksa pemerintah Indonesia melalui Kementerian Pendidikan untuk menerapkan kebijakan pemindahan ruang kelas konvensional menjadi ruang kelas daring. Proses ini dilakukan untuk menjaga kesehatan siswa agar terhindar dari Covid-19. Proses pembelajaran dapat dibantu dengan menggunakan salah satu aplikasi di internet yang bernama Student Response System (SRS). Menurut pernyataan tersebut, peneliti menyelidiki persepsi siswa sekolah menengah terhadap penerapan Quizizz sebagai platform penilaian dalam pengajaran bahasa Inggris. Penelitian metode campuran telah diterapkan dalam penelitian ini. Penelitian ini melibatkan 61 siswa sebagai partisipan pada tahap kuantitatif dan 6 siswa pada tahap kualitatif. Instrumen utama yang digunakan dalam penelitian ini adalah kuesioner online dan wawancara mendalam. Temuan menunjukkan bahwa siswa memiliki persepsi positif dan negatif terhadap penggunaan penilaian online, terutama di Quizizz. Para siswa menikmati Quizizz dan menganggapnya menyenangkan, menarik, memotivasi, dan menyenangkan karena platform Quizizz berbeda dari yang lain. Quizizz memiliki tampilan interaktif, yang memudahkan siswa dalam menggunakan platform. Namun, selain persepsi positif tentang Quizizz sebagai platform penilaian dalam pengajaran bahasa Inggris, beberapa siswa menyatakan persepsi negatif tentang Quizizz sebagai penilaian. Menurut data, salah satu persepsi negatif platform adalah kehadiran musik.</em></p>