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Purpose: This study aims to investigate emerging perspectives and challenges which teaching staff and students in the Faculties of Business and Accounting, Health and Education as well as Computing encountered in using Virtual Collaborative Learning during their classes in one accredited institution of higher education in Maseru district Lesotho. Previously conducted studies reveal that although similar studies to the current one have been conducted in different countries across the globe, conducting them in another different country such as Lesotho and in a different context might provide new information. Design/methodology/approach: The study draws on Lev Vygotsky's social constructivism as the theoretical framework because it is relevant and appropriate. The study was buttressed by constructivism paradigm, qualitative design as well as a qualitative case study. A purposive sampling technique was used in this study. A sample of 35 students and 11 teaching staff from the 3 respective faculties were used as participants of the study. This qualitative case study was based on online questionnaires issued to the participants using emails for data collection. Data were generated based on the themes which emerged. Findings: The findings of the study suggest that majority of students found Virtual Collaborative Learning helpful and a user-friendly tool. However, lack of resources, clear instructions from the teaching staff and cooperation, internet connectivity issues, as well as data expenses have been identified as stumbling blocks that discourage students' satisfactory engagement in Virtual Collaborative Learning. The findings further revealed various strategies including encouraging students to cooperate, grading students' participation on online platforms and consultations could be used to overcome the challenges encountered in using Virtual Collaborative Learning. For generalisability and understanding of the breadth of the students and teaching staff experiences and challenges of Virtual Collaborative Learning, the authors recommend further study to be conducted on a larger representative sample, using the established themes of the current study. Research limitations/implications: Using face-to-face interviews and classroom observations for data collection would have been more suitable for a qualitative methodology. However, due to COVID-19 regulations that restrict contact and limit lessons on online platforms, an online questionnaire was used for data collection. Originality/value: This research reveals emerging perspectives and challenges which are encountered by teaching staff and students while using Virtual Collaborative Learning in one institution of higher education in Maseru Lesotho. © 2022, Emerald Publishing Limited.
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Teacher educators need to thoroughly understand of teacher candidates' (TCs) experiences during the COVID-19 pandemic, in order to support TCs' development and practice of care in the post-pandemic era. Here, I examine how TCs identified body discourses, and examine how those TCs understood and enacted critically oriented caring practices during the pandemic in online asynchronous courses in the Southeastern U.S. I used body mapping as a pedagogical tool for TCs to identify, critically reflect on, and respond to body discourses that emerged during the COVID-19 pandemic in their process of understanding and enacting caring practices. I find that TCs conceptualized their care toward students, families, and colleagues in three overlapping yet distinct ways: (a) care as a motherly presence;(b) care as relational work;and (c) care as the promotion of critical consciousness. This study contributes to current teacher education scholarship by showing that a deeper understanding of TC's embodied experiences is critical for supporting TCs' understanding and practice of care. In addition, this work highlights how body mapping activities can be used in practice, in order to scaffold teachers' critically oriented care work. © 2022 Association of Teacher Educators.
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This study explores student experiences of online learning during the global COVID19 pandemic. The paper assesses whether the outcomes of constructivist inquiry-based learning can still be achieved online. A qualitative research approach was used to survey online learning experiences of students. A total of 27 registered Construction Studies university students conveniently sampled across all levels of study completed a questionnaire with close ended questions. The data collection was computed and analysed using SPSS version 27. Mean values, standard deviations and reliability values were computed. Results of the survey indicated that most students spent more time doing work during online learning. Students indicated that they were able to think more critically and discuss concepts and collaborate with other students. There was a handful of students that were more stressed, socially inactive and lacked outdoor activity due to online learning. The sample is drawn from a single university in South Africa and findings cannot be generalized across all student populations. © 2023, The Author(s), under exclusive license to Springer Nature Switzerland AG.
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Energy crisis and increasing rigorous management standards pose significant challenges for solid waste management worldwide. Several emerging diseases such as COVID-19 aggravated the already complex solid waste management crisis, especially sewage sludge and food waste streams, because of the increasingly large production year by year. As mature waste disposal technologies, landfills, incineration, composting, and some other methods are widespread for solid wastes management. This paper reviews recent advances in key sewage sludge disposal technologies. These include incineration, anaerobic digestion, and valuable products oriented-conversion. Food waste disposal technologies comprised of thermal treatment, fermentation, value-added product conversion, and composting have also been described. The hot topic and dominant research foci of each area are summarized, simultaneously compared with conventional technologies in terms of organic matter degradation or conversion performance, energy generation, and renewable resources production. Future perspectives of each technology that include issues not well understood and predicted challenges are discussed with a positive effect on the full-scale implementation of the discussed disposal methods. © 2022 Elsevier Ltd
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The registration of individuals with designated primary medical care institutions (PMCIs) is a key step towards their empanelment with these PMCIs, supported by the Primary Health Care System Strengthening Project in Sri Lanka. We conducted an explanatory mixed-methods study to assess the extent of registration at nine selected PMCIs and understand the challenges therein. By June 2021, 36,999 (19.2%, 95% CI-19.0-19.4%) of the 192,358 catchment population allotted to these PMCIs were registered. At this rate, only 50% coverage would be achieved by the end of the project (December 2023). Proportions of those aged <35 years and males among those registered were lower compared to their general population distribution. Awareness activities regarding registration were conducted in most of the PMCIs, but awareness in the community was low. Poor registration coverage was due to a lack of dedicated staff for registration, misconceptions of health care workers about individuals needing to be registered, reliance on opportunistic or passive registration, and lack of monitoring mechanisms; these were further compounded by the COVID-19 pandemic. Moving forward, there is an urgent need to address these challenges to improve registration coverage and ensure that all individuals are empaneled before the close of the project for it to have a meaningful impact.
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Background: Despite the important role of testing as a measure against the COVID-19 pandemic, user perspectives on SARS-CoV-2 tests remain scarce, inhibiting an improvement of testing approaches. As the world enters the third year of the pandemic, more nuanced perspectives of testing, and opportunities to expand testing in a feasible and affordable manner merit consideration. Methods: Conducted amid the second pandemic wave (late 2020-early 2021) during and after a multi-arm trial evaluating SARS-CoV-2 surveillance strategies in the federal state Baden-Württemberg, Germany, this qualitative sub-study aimed to gain a deeper understanding of how test users and test rejectors perceived mail-in SARS-CoV-2 gargle tests. We conducted 67 semi-structured in-depth interviews (mean duration: 60 min) via telephone or video call. Interviews were audio-recorded, transcribed verbatim and analyzed inductively using thematic analysis. The Consolidated Framework for Implementation Research guided the findings' presentation. Results: Respondents generally described gargle sampling as simple and comfortable. However, individual perceptions of the testing method and its feasibility varied widely from disgusting and complicated to simple and brilliant. Self-sampling was appreciated for lowering infection risks during testing, but also considered more complex. Gargle-sampling increased participants' self-efficacy to sample correctly. Communication (first contact, quantity and content of information, reminders, support system) and trust (in the study, its institutional affiliation and test method) decisively influenced the intervention's acceptability. Conclusion: User-driven insights on how to streamline testing include: consider communication, first impressions of tests and information as key for successful mail-in testing; pay attention to the role of mutual trust between those taking and administering tests; implement gargle self-sampling as a pleasant alternative to swab testing; offer multiple test methods to increase test up-take.
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COVID-19 , SARS-CoV-2 , Humans , COVID-19/diagnosis , Emotions , Pandemics , Postal Service , Implementation Science , Specimen HandlingABSTRACT
The main aim of this article is to determine Turkish EFL (English as a foreign language) students' perceptions about learning English through distance education (henceforth DE) during the COVID-19 pandemic. To realize this aim, the study adopted a qualitative research design and used the metaphor elicitation technique, semi-structured telephone interviews, and an online focus group interview to collect data. The results of the analysis show that most of the students prefer face-to-face English education in a classroom setting rather than online education. Despite some positive comments about DE like it being more comfortable for shy students, students' attitudes toward DE were found to be mostly negative because of the challenges they faced like technical problems, health and focus issues, a lack of interaction and speaking practice in the target language, feelings of anxiety and isolation and low motivation, and DE not addressing all learning styles effectively. Using several qualitative data collection tools, this study provides valuable insights into the thoughts and experiences of students about online English language learning, which can be taken into account to enhance future online language teaching and learning efforts. This study also offers some suggestions to make online EFL education more productive and effective.
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The purpose of this paper is to review recent literature on parental perspectives of the impact of the COVID-19 pandemic on the home-schooling of children with special educational needs and disabilities, as well as to consider implications for their education and well-being. Eleven papers were reviewed, published between 2020 and 2021, selected according to a systematic protocol from three widely used online databases. Analysis of the reviewed papers found that transitioning to home-schooling during the pandemic had negative consequences for most of the children, as well as for their parents, though a small but significant number reported positive consequences. Three key areas of concern were identified in the analysis: balancing home-schooling with parent work activities; parent relationships with schools and support services and agencies and home-schooling effects on the well-being and mental health of parents and children.
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This study aims to analyze the antecedents of e-learning adoption during the pandemic at Adamson University. This quantitative research uses Structural Equation Modeling Partial Least Square (SEM-PLS) to analyze the data obtained. The data was collected from Adamson University's higher education students with an online questionnaire survey distributed from May until July 2022. In total, there are 207 respondents collected and valid to do measurement and further analysis. The study comprehensively demonstrates consistent results with the previous research. The results show that all hypotheses are accepted and supported by previous research. System Quality and Prior e-learning experience have a positive and significant direct effect on Perceived Usefulness and Perceived Ease of Use. Then. Perceived Usefulness and Perceived Ease of Use have a positive and significant effect on Attitude toward e-learning. Attitude towards e-learning has a positive direct effect on behavioral intention to use e-learning. Implications, limitations, and further research suggestions were well discussed. © 2022 IEEE.
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This work presents an up-to-date overview on the recent developments in the Organic Rankine Cycle (ORC) industry. Information from more than 30 manufacturers, representing a total of almost 2900 projects have been collected and analyzed providing information on trends in the past and the market evolution during the last four years in terms of installed capacity and installed plants divided by application, macro region and manufacturer. At the end of 2020, the cumulated installed capacity of ORCs was 4.5 GW. Since 2016, the overall ORC market increased by 40 % (+1.18 GW) in terms of installed capacity and by 46.5 % (+859) in terms of installed plants. Regarding the capacity increase between 2016 and 2020, the largest increase is due to geothermal application (+972 MW, +45 %) with 74 new plants, while waste heat systems have the largest growth in terms of the number of installed systems (630 plants, +208 %) with an installed capacity of 125 MW. The installed capacity of biomass ORC systems increased by 20 % (69 MW), while the number of installed plants increased by 22 % (77 plants). Additionally, a market survey was conducted, and ten established ORC manufactures contributed their perspective on the ORC market. The results highlight that, despite COVID-19, the current market situation is in good shape and that the majority of the manufacturers have positive expectations concerning the future development. Central and Eastern Europe as well as the ASEAN region are rated as the regions with the highest growth potential. Geothermal energy and small waste heat installations are expected to be the most relevant heat sources for the coming years. © 2023 Elsevier Ltd
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The purpose of this research was to address the gap in the existing literature on the multilingual aspect of language in psychotherapy with children and adolescents. This research aimed at interpreting possible meanings for clients of being multilingual in the therapeutic process as well as reflect on the influence of clients' multilingualism in the therapeutic relationship. The researcher used a systematic literature review (PRISMA guidelines, 2009) to select articles based on empirical qualitative/mixed studies with participants up to 25 years old or adults referring to childhood/adolescence. The researcher used thematic synthesis (Thomas & Harden, 2008) to extract, analyse and interpret data. The rigour of this study was enhanced by the use of auto‐ethnography as a source of evidence (McLeod, 2015). The auto‐etnography documents self‐reflections on personal experience of being multilingual contributing to deeper contextualised knowledge. The findings confirm previous research on the existence of a link between multilingualism and "identity" (Costa, 2020, p. 5). This research suggests that the meaning a client gives to bilingualism can be co‐constructed within an attuned therapeutic relationship. In this co‐construction journey, there is a significant opportunity for children and young people in finding their way through languages, hence reaching emancipation and affirmation in the world. The main limitation of this research relates to the fact that there are not many studies with children/young people. This led the researcher to also include studies based on a mixed sample and with adults referring to childhood/adolescence, which might have influenced the interpretation of findings. [ FROM AUTHOR]
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The COVID-19 outbreak resulted in protracted lockdowns, causing businesses to reconsider keeping their operations running smoothly without interruption. Employee engagement has played a critical role in achieving this. This research aimed to see what strategies business organizations use to keep their employees significantly engaged during the pandemic. A systematic review of empirical studies conducted between 2020 and 2022 is synthesized. The review revealed that offering mental relief care and resilience were the most preferred approaches to enhance employee engagement. Competency building, demonstrating employee empathy, and directing expectations helped in job engagement. The review offers insight and implications for organizations and policymakers on strategizing engagement policies and maintaining the well-being of their employees in tough times. Finally, the review established a call for future research agenda.
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BACKGROUND: Medical cannabis is one of the most commonly reported treatments for chronic pain. The wide acceptance and research in alternative medicine have put medical cannabis in the limelight, where researchers are widely examining its therapeutic benefits, including treatment of chronic pain. OBJECTIVE: The purpose of this scoping review is to provide an overview of the perspectives on cannabidiol as an alternative treatment for chronic pain among health professionals and legal cannabis users. METHODS: The framework of Arksey and O'Malley guides the design of this scoping review, and the elements reported use the recommended guidelines of the PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews). A comprehensive literature search accessed the databases CINAHL Complete and MEDLINE via EBSCO, Australia/New Zealand Reference Centre, PsycINFO, Ovid Emcare, Wiley Online Library, Scopus, Informit New Zealand Collection, and Google Scholar for published literature, and then it was extended to include gray literature. Gray literature searches included searching the databases Australia/New Zealand Reference Centre, Informit New Zealand Collection, INNZ: Index New Zealand, ProQuest Dissertations & Theses Global, and AUT Tuwhera Research Repository, and the website nzresearch.org.nz. The studies included in this scoping review were assessed for eligibility for inclusion using the following criteria: published in English after 2000, conducted in New Zealand (NZ) or Australia, and aimed to investigate the perspectives of health professionals and medical cannabis users using interviews for data collection. Studies were screened for inclusion using Covidence, a software tool to filter search results, and the risk of bias was assessed using the Critical Appraisal Skills Programme tool. Although this is not a required step for scoping reviews, it added an element of strength to this scoping review. Data will be analyzed using thematic analysis guided by Braun and Clarke. The findings from the data analysis will be presented in a table, which will then inform the key themes for discussion. RESULTS: The database search started in October 2021 and was completed in December 2021. The total number of studies included in this review is 5 (n=5). Studies included were conducted in NZ or Australia and examined the perspectives using participant interviews. This scoping review is anticipated to be submitted for publication in December 2022. CONCLUSIONS: Using perspectives is a valuable tool to understand the challenges experienced by health professionals and medical cannabis users associated with medical cannabis treatment. Addressing these challenges through interventions that are highlighted through perspectives such as educating health professionals to increase access to medical cannabis in NZ may aid in policy reformulation for medical cannabis in the context of NZ. Thus, this scoping review highlights the importance of medical cannabis research and suggests recommendations to guide and inform medical cannabis policy in the context of NZ. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/37697.
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Post-acute sequelae of severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) (PASC) is a complex condition with multisystem involvement. We assessed patients' experience with a PASC clinic established at University of Iowa in June 2020. A survey was electronically mailed in June 2021 asking about (1) symptoms and their impact on functional domains using the Patient-Reported Outcomes Measurement Information System (PROMIS) measures (Global Health and Cognitive Function Abilities) (2) satisfaction with clinic services, referrals, barriers to care, and recommended support resources. Survey completion rate was 35% (97/277). Majority were women (67%), Caucasian (93%), and were not hospitalized (76%) during acute COVID-19. As many as 50% reported wait time between 1 and 3 months, 40% traveled >1â h for an appointment and referred to various subspecialities. Participants reported high symptom burden-fatigue (77%), "brain fog" (73%), exercise intolerance (73%), anxiety (63%), sleep difficulties (56%) and depression (44%). On PROMIS measures, some patients scored significantly low (≥1.5 SD below mean) in physical (22.7%), mental (15.9%), and cognitive (17.6%) domains. Approximately 61% to 93% of participants were satisfied with clinical services. Qualitative analysis added insight to their experience with healthcare. Participants suggested potential strategies for optimizing recovery, including continuity of care, a co-located multispecialty clinic, and receiving timely information from emerging research. Participants appreciated that physicians validated their symptoms and provided continuity of care and access to specialists.
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Hospitalisation at Home (HaH) is a new model providing hospital-level care at home as a substitute for traditional care. Biometric monitoring and digital communication are crucial, but little is known about user perspectives. We aim to explore how in-patients with severe COVID-19 infection and clinicians engage with and experience communication and self-monitoring activities following the HaH model. A qualitative study based on semi-structured interviews of patients and clinicians participating in the early development phase of HaH were conducted. We interviewed eight clinicians and six patients. Five themes emerged from clinicians: (1) staff fear and concerns, (2) workflow, (3) virtual closeness, (4) patient relatives, and (5) future HaH models; four themes emerged from patients: (1) transition to home, (2) joint responsibility, (3) acceptability of technologies, and (4) relatives. Despite technical problems, both patients and clinicians were enthusiastic about the conceptual HaH idea. If appropriately introduced, treatment based on self-monitoring and remote communication was perceived acceptable for the patients; however, obtaining vitals at night was an overwhelming challenge. HaH is generally acceptable, perceived patient-centred, influencing routine clinical workflow, role and job satisfaction. Therefore, it calls for educational programs including more perspective than issues related to technical devices.
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COVID-19 , Humans , Hospitalization , Qualitative Research , Patients , CommunicationABSTRACT
INTRODUCTION: Making a diagnosis of asthma can be challenging for clinicians and patients. A clinical decision support system (CDSS) for use in primary care including a patient-facing mode, could change how information is shared between patients and healthcare professionals and improve the diagnostic process. METHODS: Participants diagnosed with asthma within the last 5 years were recruited from general practices across four UK regions. In-depth interviews were used to explore patient experiences relating to their asthma diagnosis and to understand how a CDSS could be used to improve the diagnostic process for patients. Interviews were audio recorded, transcribed verbatim and analysed using a thematic approach. RESULTS: Seventeen participants (12 female) undertook interviews, including 14 individuals and 3 parents of children with asthma. Being diagnosed with asthma was generally considered an uncertain process. Participants felt a lack of consultation time and poor communication affected their understanding of asthma and what to expect. Had the nature of asthma and the steps required to make a diagnosis been explained more clearly, patients felt their understanding and engagement in asthma self-management could have been improved. Participants considered that a CDSS could provide resources to support the diagnostic process, prompt dialogue, aid understanding and support shared decision-making. CONCLUSION: Undergoing an asthma diagnosis was uncertain for patients if their ideas and concerns were not addressed by clinicians and were influenced by a lack of consultation time and limitations in communication. An asthma diagnosis CDSS could provide structure and an interface to prompt dialogue, provide visuals about asthma to aid understanding and encourage patient involvement. PATIENT AND PUBLIC CONTRIBUTION: Prespecified semistructured interview topic guides (young person and adult versions) were developed by the research team and piloted with members of the Asthma UK Centre for Applied Research Patient and Public Involvement (PPI) group. Findings were regularly discussed within the research group and with PPI colleagues to aid the interpretation of data.
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Given the increasing importance of green bond as the main funding source for the Sustainable Development Goals, the green bond is an emerging concept in the region of Southeast Asia. In addition, the concurrent Covid-19 pandemic has caused disruption to the development of green bond around the world. This research explores the current development status of the green bond in Southeast Asian countries. A total of thirty-two semi-structured interviews were held with capital market participants in Southeast Asian countries. The results highlight barriers, opportunities, and regulation difficulties, and expected growth for the development of the green bond market. This research is concluded by indicating several propositions that can be tested in the future to generalize the findings from this work. We thus extend the knowledge of green bond in the financial markets of Southeast Asian countries, which also delivers implications for practitioners and policy-makers regarding the development of green bond in Southeast Asian countries.
Compte tenu de l'importance croissante de l'obligation verte en tant que principal attribut financier des objectifs de développement durable (ODD), l'obligation verte est un concept émergent dans la région de l'Asie du Sud-Est. En outre, la pandémie concomitante de Covid-19 a perturbé le développement des obligations vertes dans le monde. Cette étude explore l'état actuel du développement de l'obligation verte dans les pays d'Asie du Sud-Est. Au total, trente-deux entretiens semi-directifs ont été menés avec des acteurs du marché des capitaux dans les pays d'Asie du Sud-Est. Les résultats mettent en évidence les obstacles, les opportunités et les difficultés de réglementation, ainsi que la croissance attendue pour le développement du marché des obligations vertes. Dans sa conclusion, cette étude émet plusieurs propositions qui peuvent être testées à l'avenir pour généraliser les résultats de ce travail. Nous étoffons ainsi la connaissance concernant les obligations vertes sur les marchés financiers des pays d'Asie du Sud-Est, ce qui comporte également des implications pour les praticien·ne·s et les décisionnaires en ce qui concerne le développement des obligations vertes dans les pays d'Asie du Sud-Est.
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Cannabidiol (CBD) is a non-intoxicating chemical in cannabis plants that is being investigated as a candidate for treatment in Fragile X Syndrome (FXS), a leading known cause of inherited intellectual developmental disability. Studies have shown that CBD can reduce symptoms such as anxiety, social avoidance, hyperactivity, aggression, and sleep problems. This is a qualitative study that utilized a voluntary-anonymous survey that consisted of questions regarding demographics, medical information, the form, type, brand, dose, and frequency of CBD use, the rationale for use, the perception of effects, side effects, and costs. The full survey contained a total of 34 questions, including multiple-choice, Likert-scale, and optional free-response questions. This research revealed that there are a wide range of types, brands, and doses of CBD being administered to individuals with FXS by their parents and caregivers. There were many reasons why CBD was chosen, the most common ones being that respondents had heard positive things about CBD from members of the community, the perception that CBD had fewer side effects than other medications, and because respondents felt that CBD was a more natural substance. Most of the parents and caregivers who responded agreed that CBD improved some of the symptoms of FXS and made a positive difference overall. CBD has the therapeutic potential to help relieve some FXS symptoms. Future research is necessary to understand the benefits of CBD in FXS.
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Cannabidiol , Fragile X Syndrome , Intellectual Disability , Anxiety , Cannabidiol/therapeutic use , Caregivers , Fragile X Syndrome/drug therapy , Humans , ParentsABSTRACT
The COVID-19 pandemic has seen the advent of novel medical devices and practices. Demand for quality healthcare services rose exponentially which eventually led to accessibility becoming a major issue of concern. In addition to this, in-person consultations and various other conventional treatment methods were proven to be problematic. Limitations of traditional health care systems such as in-person consultations were highlighted, and conventional treatment methods have proven to be problematic. As an alternative approach, telehealth services are now gaining recognition due to their high efficiency, ease of use, and state-of-the-art technology. In this article, trends of telemedicine and its evolving popularity across the medical community due to the pandemic and beyond are studied and highlighted. An online survey form was circulated to 42 medical practitioners and interns to analyse the growing interest in telemedicine. The questionnaire covered the physicians' perspectives, preferences, experiences, and other important aspects of home-based teleconsultation. Based on the responses collected from doctors and medical interns, 14.2% disapproved, whereas 38.1% favoured and 47.6% showed a neutral response to the teleconsultation. More than 50% of the respondents claim the process to be time-consuming and 42% of them perceived it to be the other way round. 4.8% of the doctors preferred it to be only through computers whereas 45.2% per cent preferred consultation through smartphones and 50% of them preferred it be both ways. More than half (59.5%) of the doctors preferred the pandemic scenario and the remaining for its continued usage post-pandemic. Although India has the world's second-largest online market, a major population in India is digitally illiterate according to the Digital Foundation of India. Thus, it is important to devise telehealth technology that is simplest to use to reach also the economically backward patient communities.
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Introduction: Making bench to bedside advances in cystic fibrosis (CF) care requires the sustained engagement and trust of people living with CF. However, there is a scarcity of studies exploring their concerns and priorities regarding research and its end products. The aim of this qualitative study was to generate empirical evidence regarding patient and caregiver perspectives on cystic fibrosis research and personalized medicine to foster developments in translational research in Canada. Methods: A total of 15 focus groups were conducted, engaging 22 adults with CF and 18 caregivers (e.g., parents, siblings and partners) living in Canada. Inductive thematic analysis relied on an iterative process involving themes derived from both participant meaning-making and existing scientific literature. Participant perspectives were considered along intrapersonal, intracommunity, interpersonal, and structural lines. Results: Overall, participants described a relationship to CF research inextricable from the lived experience of CF as a lifelong progressive and terminal disease and from the goal of advancing medical science. They were enthusiastic and excited about the emergence of CFTR modulators, although they had some knowledge gaps regarding the associated research. They largely spoke to positive experiences with researcher communication but had feedback regarding informed consent processes and the return of study results. Participants also voiced concerns about structural access barriers to research and to its end products. Extensive histories of research participation, a relatively small and intercommunicative CF community, and structural overlap between research and care settings contributed to their perspectives and priorities. Conclusion: Study findings are valuable for researchers and policy-makers in CF and rare or progressive diseases more broadly. Continuing to solicit and listen to the voices of patients and caregivers is crucial for research ethics and the translation of new therapies in the area of personalized medicine.