Direct Engagement Research Articles

Experience of Care Among Adults With Acute Leukemia Near the End of Life: A Scoping Review.

Background: Acute leukemia is a cancer of the blood and bone marrow with a high symptom burden and a high mortality rate in adults. The quality of end-of-life care among this patient population is deemed to be low based on health care administrative data, though the patient experience is not included in this evaluation. Objective: This scoping review aims at exploring and mapping the current research literature on the experience of care among adults with incurable acute leukemia near the end of life. Design: The JBI framework guided our scoping review, and the protocol was prospectively registered in the Open Science Forum. Results: A total of 5661 unique articles were screened for title and abstract, and 44 were selected for full text. After a manual search, five studies published in seven articles were selected for data extraction, including three qualitative and two quantitative studies. Two studies used family caregivers as patient proxies, two studies engaged patients directly, whereas one study obtained data from patients and family caregivers. Patient care in acute settings was reported in all studies, with most patients dying in acute care settings. Patients and family caregivers often valued an open and honest approach, with sufficient time for dialogue with their providers. Discussions about prognosis, palliative care, and hospice care were often late or incomplete. The medicalization of end-of-life care, including intensive care unit admissions and invasive medical procedures, were viewed as the norm by some providers, though perceived as distressing for both patients and their loved ones. Conclusions: Adults with acute leukemia face significant challenges in accessing high-quality end-of-life care brought about by the complex nature of their disease and its treatment. A systematic exploration of the end-of-life experience among these patients through direct patient engagement or by way of patient reporting proxies is needed.

Ingredients of strong interactions in cuprates

In this article, part of the Memorial Special Issue of Physica C dedicated to the esteemed Prof. K. Alex Müller, we delve into the fundamental components of robust interactions within the cuprates. One of us (ZXS) had the privilege of spending a sabbatical year at the University of Zürich, collaborating with the experimental group led by Jürg Osterwalder in 2002. This unique opportunity facilitated direct engagement with Prof. Müller, enabling the absorption of his invaluable insights. Prof. Müller's intuition and unorthodox perspectives have indelibly shaped our approach to the cuprate conundrum. Our focus centers on the contributions personally undertaken, reflecting the trajectory of our thought process.

Final-year oral hygiene and dental therapy students’ perceptions of teaching and learning at a South African university

Dental students may provide insightful course evaluation and feedback due to their direct engagement with theoretical and clinical instruction during their training. According to the literature, student feedback may enhance dental education. This study investigated students’ perceptions of teaching and learning, the various aspects of which will be discussed further. Aims and objectivesThe study aimed to determine the perceptions of the final year dental therapy and oral hygiene students regarding teaching and learning at a South African university. Topics such as teaching methods, suitable attributes of academic staff, potential barriers to learning, clinical quotas, effects of the pandemic and recommendations to enhance teaching and learning were investigated. MethodsA cross-sectional study was conducted during the 2021 and 2022 academic years. Quantitative and qualitative data was captured via an online questionnaire. Participants were asked to rate their perceptions of teaching and learning via a five-point Likert scale and respond to open-ended questions. ResultsSixty-nine students participated in this study, yielding a response rate of 65.09%. The findings demonstrated students’ preference for contact teaching methods such as clinical observation (80%; n=55) and clinical demonstrations (78%; n=54) compared to online lectures (54%; n=37). Stress (78%; n=54) and insufficient feedback (88%; n=61) were identified as learning barriers. Increased clinical training was among the suggestions to enhance learning. ConclusionStudents should be encouraged to provide feedback regarding teaching and learning as this may positively influence curriculum design and development.

Actor-landscapes as visual canvas for identifying, representing, and aligning stakeholders

Tools applied by water professionals in climate adaptation projects tend to have a technical focus and a superficial stakeholder approach. Development of integrative and synergetic solutions require more delicate and transformative forms of stakeholder engagement. Through an action research process, this article explores how a visual canvas for stakeholder engagement can support water professionals in identifying, representing, and aligning stakeholders in development of integrative and synergetic climate adaptation solutions. The visual canvas is developed in the form of ‘Actor-Landscapes’, and presents a practical tool for engaging stakeholders inspired by Actor-Network Theory. Actor-Landscapes proved to especially support water professionals in four key challenges in their transformative approach to stakeholder engagement: 1) to recognize stakeholders more broadly and deeply, 2) to organize and present data about key stakeholders and the landscape in which these are anchored, 3) to prioritize which stakeholders to enhance based on alignment considerations, and 4) to legitimize mapped stakeholder perspectives through direct dialogue and engagement. The article concludes that Actor-Landscapes have interesting boundary object abilities supporting water professionals in inviting for and empowering integrative and synergetic transformations of knowledge between stakeholders in climate adaptation projects.

Narratives, Information and Manifestations of Resistance to Persuasion in Online Discussions of HPV Vaccination

ABSTRACT There are both theoretical accounts and empirical evidence for the fact that, in health communication, narratives (story telling) may have a persuasive advantage when compared with information (the provision of facts). The dominant explanation for this potential advantage is that narratives inhibit people’s resistance to persuasion, particularly in the form of counterarguing. Evidence in this area to date has most often been gathered through lab or field experiments. In the current study we took a novel approach, gathering our data from naturally-occurring, non-experimental and organically evolving online interactions about vaccinations. We focus on five threads from the parenting forum Mumsnet Talk that centered on indecision about the HPV vaccination. Our analysis revealed that narratives and information were used by posters in similar quantities as a means of providing vaccination-related advice. We also found similar frequencies of direct engagement with both narratives and information. However, our findings showed that narratives resulted in a significantly higher proportion of posts exhibiting supportive engagement, whereas information resulted in posts exhibiting a significantly higher proportion of challenges, including counterarguing and other manifestations of posters’ resistance to persuasion. The proportions of supportive versus challenging engagement also varied depending on the topic and vaccine stance of narratives. Notwithstanding contextual explanations for these patterns, our findings, based on this original approach of using naturalistic data, provide a novel kind of evidence for the potential of narratives to inhibit counterarguing in authentic health-related discourse.

Are We Ready to Really Hear the Voices of Those Concerned? Lessons Learned from Listening to and Involving Children in Child and Family Psychology Research

A changing view of children, accelerated by the Convention of the Rights of the Child (UN in Convention on the rights of the child, UN Doc. A/RES/44/25, 1989, http://www2.ohchr.org/english/law/pdf/crc.pdf) has shifted the landscape of child and family research over the last few decades. Once viewed with low credibility and operating outside the interpretive framework of adult researchers, the rights-bearing child is increasingly recognized not only as having the capacity but also the right to participate in research. More recently, this movement has transitioned from the direct engagement of children as research participants—now considered commonplace, although less so for those who are structurally vulnerable—to the involvement of children in research design, review, conduct, and dissemination. Yet, both practical and ethical challenges remain. While children have the right to participation, they also have the right to protection. In this commentary, we set out to: (i) lay forth epistemic, child rights, and child sociology arguments for doing research about, with and by children and youth; (ii) recount our own journey of including children and youth in research to demonstrate the unique knowledge and insights gained through these approaches; and (iii) offer lessons learned on how to engage children and youth in research, including the involvement of structurally vulnerable groups.

Energy systems modelling for just transitions

Policymaking increasingly targets an energy transition that is not only low cost and low carbon, but also just. While energy system models have been useful policymaking tools towards achieving the first two objectives, it is yet unclear to what extent they can also support a just transition. Here, we review 73 recent energy systems modelling studies using an analytical coding frame and observe a diversity of approaches to account for energy justice. While models do show promise in being able to support a just transition, especially in terms of assessing distributional outcomes, many of the approaches in the literature are poorly connected to current energy justice goals and discourses, decreasing the studies’ policy relevance and leaving policymakers with suboptimal planning support. Based on our results, we suggest eight actions for modellers to increase the policy relevance of their studies, which include more direct engagement with policy and research discourses, developing location-specific case studies, leveraging public participation in the modelling process, and considering asset decommissioning.

Unintended Biases due to Simulated Impairment within Inclusive Mobility Research and Design

Simulated impairment refers to requiring persons without impairments to substitute persons with impairments in endeavors related to training, design creation, or usability testing. However, disability voices and research suggest limited effectiveness, greater distancing, and exclusion. Despite this, the simulation of physical limitations, including that of aging, continue to be used under the assumption that physical tasks and usability ratings do not significantly differ in simulation. In this experiment, age- and sex-matched older adults who use and do not use a manual wheelchair (MWC) are instructed to independently perform a self-paced parallel park using an MWC. The total clearance between obstacles required to perform a collision-free trial was recorded. Thirty-eight volunteers were recruited (MWC-user n=15; Simulated Impairment [SI] n=23). Higher clearance was required by the MWC group, suggesting the use of simulated impairment for motor tasks may result in bias. Open-ended questions revealed self-centered viewpoints, supporting literature that raises inclusion concerns regarding views of an “Other” group. Overall, our results support the direct engagement of target populations during early design to appropriately define user perspectives and needs. Designers should work with the community of people who face limitations rather than substituting their voices with those who may not accurately represent all of their consumer needs.

Peripheral Eye Tracking for Measurement of Military Pilot Performance

Abstract Flying plays a crucial role in establishing both tactical and strategic superiority through direct engagement, facilitating logistics movement, and providing other essential supports. However, a concerning trend has been observed regarding pilot flight time, which has decreased from approximately 300 hours per year to 230 hours per year. This decline could potentially impact flight safety and training, particularly in situations requiring rapid decision-making. One of the critical factors affecting rapid decision-making is a pilot's ability to closely monitor the aircraft's systems and flight path. The objective of this paper is to review and synthesize a series of studies that investigated the impact of peripheral gaze behavior on flying performance. Pilots can process peripheral eye gaze information more quickly and effectively, and peripheral eye movements could be used to activate controls faster than typical motor reflexes. Mathematical models of visual attention related to peripheral eye tracking have proven to be valuable predictive tools for human-machine interfaces and can lay the groundwork for improved training of pilots. Understanding gaze behavior offers valuable insights into the human-machine interface in modern cockpits. Keywords: Peripheral eye tracking, Pilot decision making, Human-machine teaming.

Developing Culturally Appropriate Content for a Child-Rearing App to Support Young Children's Socioemotional and Cognitive Development in Afghanistan: Co-Design Study.

Optimal child-rearing practices can help mitigate the consequences of detrimental social determinants of health in early childhood. Given the ubiquity of personal digital technologies worldwide, the direct delivery of evidence-based information about early childhood development holds great promise. However, to make the content of these novel systems effective, it is crucial to incorporate place-based cultural beliefs, traditions, circumstances, and value systems of end users. This paper describes the iterative approach used to develop the Thrive by Five child-rearing app in collaboration with Afghan parents, caregivers (eg, grandparents, aunts, and nannies), and subject matter experts (SMEs). We outline how co-design methodologies informed the development and cultural contextualization of content to meet the specific needs of Afghan parents and the content was tested and refined in collaboration with key Afghan stakeholders. The preliminary content was developed based on a comprehensive literature review of the historical and sociocultural contexts in Afghanistan, including factors that influence child-rearing practices and early childhood development. After an initial review and refinement based on feedback from SMEs, this content was populated into a beta app for testing. Overall, 8 co-design workshops were conducted in July and August 2021 and February 2022 with 39 Afghan parents and caregivers and 6 SMEs to collect their feedback on the app and its content. The workshops were audio recorded and transcribed; detailed field notes were taken by 2 scribes. A theoretical thematic analysis using semantic codes was conducted to inform the refinement of existing content and development of new content to fulfill the needs identified by participants. The following 4 primary themes were identified: child-rearing in the Afghan sociocultural context, safety concerns, emotion and behavior management, and physical health and nutrition. Overall, participants agreed that the app had the potential to deliver valuable information to Afghan parents; however, owing to the volatility in the country, participants recommended including more activities that could be safely done indoors, as mothers and children are required to spend most of their time at home. Additionally, restrictions on public engagement in music required the removal of activities referencing singing that might be performed outside the home. Further, activities to help parents reduce their children's screen time, promote empathy, manage emotions, regulate behavior, and improve physical health and nutrition were requested. Direct engagement with Afghan parents, caregivers, and SMEs through co-design workshops enabled the development and refinement of evidence-based, localized, and contextually relevant child-rearing activities promoting healthy social, emotional, and cognitive development during the first 5 years of children's lives. Importantly, the content was adapted for the ongoing conflict in Afghanistan with the aim of empowering Afghan parents and caregivers to support their children's developmental potential despite the security concerns and situational stressors.

Community participation for reproductive, maternal, newborn and child health: insights from the design and implementation of the BornFyne-prenatal management system digital platform in Cameroon.

Across communities in low-middle income countries, digital health is currently revolutionizing the delivery of health services, particularly in the field of reproductive, maternal, newborn, and child health (RMNCH) services. While studies have shown the effectiveness of mHealth in delivering RMNCH services, there is little information about factors that enhance mHealth services utilization in low-cost settings including stakeholders' level of influence on the implementation of digital health intervention in sub-Saharan Africa. This paper seeks to describe important lessons on the levels of stakeholders' direct or indirect influence on the design and implementation of the BornFyne-PNMS digital health platform to support RMNCH services. A participatory research (PR) design approach was employed to explore stakeholders' perspectives of a new initiative, through direct engagement of local priorities and perspectives. The process of introducing the digital application called the BornFyne-PNMS for district health delivery system and the community, and integrating it within the district health delivery system was guided by research-to-action, consistent with the PR approach. To explore stakeholders' perspectives through a PR approach, we conducted a series of stakeholder meetings fashioned after focus group discussions. Issues around male involvement in the program, sensitization and equity concerns arose. Emergent challenges and proposed strategies for implementation from diverse stakeholders evidently enriched the design and implementation process of the project intervention. Stakeholder meetings informed the addition of variables on the mobile application that were otherwise initially omitted, which will further enhance the RMNCH electronic data collection for health information systems strengthening in Cameroon. This study charts a direction that is critical in digital health delivery of RMNCH in a rural and low-income community and describes the important iterative stakeholder input throughout the study. The strategy of stakeholders' involvement in the BornFyne PNMS implementation charts a direction for ownership and sustainability in the strengthening of Cameroon's health information system.

Radical ligand transfer: a general strategy for radical functionalization.

The place of alkyl radicals in organic chemistry has changed markedly over the last several decades, evolving from challenging-to-generate "uncontrollable" species prone to side reactions to versatile reactive intermediates enabling construction of myriad C-C and C-X bonds. This maturation of free radical chemistry has been enabled by several advances, including the proliferation of efficient radical generation methods, such as hydrogen atom transfer (HAT), alkene addition, and decarboxylation. At least as important has been innovation in radical functionalization methods, including radical-polar crossover (RPC), enabling these intermediates to be engaged in productive and efficient bond-forming steps. However, direct engagement of alkyl radicals remains challenging. Among these functionalization approaches, a bio-inspired mechanistic paradigm known as radical ligand transfer (RLT) has emerged as a particularly promising and versatile means of forming new bonds catalytically to alkyl radicals. This development has been driven by several key features of RLT catalysis, including the ability to form diverse bonds (including C-X, C-N, and C-S), the use of simple earth abundant element catalysts, and the intrinsic compatibility of this approach with varied radical generation methods, including HAT, radical addition, and decarboxylation. Here, we provide an overview of the evolution of RLT catalysis from initial studies to recent advances and provide a conceptual framework we hope will inspire and enable future work using this versatile elementary step.

Characterizing the information needs and behaviour of Egyptian street vendors

This study intends to investigate the information needs and behaviour of Egyptian street vendors in terms of their perspectives, motives, attitudes, habits, and impediments. In five focus groups, the participants (n = 54) were interviewed. The researcher employed grounded theory in this qualitative investigation. The majority of respondents were male, uneducated to possessing informal education, in their twenties and thirties, and married. A significant proportion of respondents favoured direct engagement, face-to-face meetings, or mobile and social media to share oral sources with others. Respondents sought the knowledge mostly to aid them with executing work-related duties. Numerous respondents favoured spoken or informal sources over written ones. Personal experience was one of the most important sources upon which respondents relied. Illiteracy, psychological pressure, a negative social image, a lack of awareness, a lack of skills, and a lack of time are among the major obstacles respondents face.

Learning in conversation-A feasibility pilot study involving dental students and older people.

Older people represent a growing proportion of the population in most high-income countries. The impact of oral diseases on health and well-being is far-reaching, and future graduates should be able to meet their needs in this phase of life. This research tested the feasibility of involving dental students in direct community engagement to explore older peoples' oral health concerns and information needs. Seventeen older people were recruited locally to attend workshops with eight dental students in a health and well-being centre. First, older people selected oral health-related topics important to them, raising relevant questions and concerns. Students provided evidence-informed feedback on these selected topics at a subsequent workshop. Participants (students and older people) reflected on their involvement (via questionnaires, discussions and personal reflections). Qualitative data were analysed using thematic analysis. The structure, process and outcome of the study were explored. Structure: Both students and older people were willing to participate in workshops. Workshops in the community facilitated active engagement between both groups without the constraints of clinics. Students considered pre-workshop preparations adequate but raised issues about their ability to manage 'strong characters' within discussion groups. Older people welcomed the initiative. Important topics raised by them were addressed by students giving them advice on maintaining their oral health. Students reported an improved understanding of how older people can be supported and expected a significant impact on future practice. Student involvement in direct community engagement was welcomed by all, demonstrating the feasibility and positive impact of the design whilst highlighting issues of importance for older people's oral health.

When therapists talk to voices: Perspectives from service-users who experience auditory hallucinations.

The purpose of the study was to investigate service-users' experiences of a therapist engaging with their voices (auditory hallucinations) using psychological formulation and direct dialogue. A nested qualitative study was conducted within a randomised controlled trial of a novel intervention for supporting voice hearers with a diagnosis of psychosis (Talking With Voices: TwV). Of 24 participants allocated to therapy, 13 (54%) consented to a semi-structured, in-depth interview which was audio-recorded, transcribed verbatim and analysed using inductive thematic analysis. Participants described their experiences of using the intervention to improve the relationship between themselves and their voice(s). The findings are organised within three themes and associated subthemes: (1) A desire for suitable help (Motivation to reduce voice-related distress, Limitation of other treatment options); (2) Engaging with voices (Challenges, Support and safety, Exploration and revelation); and (3) Contemplating the future (The aftermath of adversity, Living well with voices, Resources for moving forward). Despite the emotional challenges of the work, many participants experienced tangible gains in the ways they related to their voices post-intervention. For those who responded well, the development of safety strategies, including a strong therapeutic alliance, could facilitate a basis for developing new insights about the origin/nature of the voices which could then be applied in constructive ways. Further research is needed to understand which client characteristics indicate suitability for TwV as opposed to relational therapies that require less direct engagement with voices and/or the psychosocial conflicts with which they may be associated.

Ideas, Policy Feedback and the American Political Economy

In their volume The American Political Economy, Jacob S. Hacker et al. seek to renew the study of American political economy (APE) through a direct engagement with other areas of political science, including and especially comparative political economy (CPE). In the introduction of their volume, they lay out the foundations of APE as both a field of research and an approach to American politics that seeks to contribute to the study of the United States as well as to the broader discipline of political science. In this review essay, I will discuss the APE as an intellectual project to stress its key assumptions and its potential contribution to the study of politics and public policy, in the United States and beyond. Then, I will discuss two key issues that, while not explicitly central to APE as developed in The American Political Economy, could help enrich this novel approach. These two issues are policy feedback, a concept already prominent in the institutionalist tradition APE draws on, and the role of ideas in politics, which in recent decades has gained more currency in the study of politics, public policy and CPE.

La sfida della corruzione politica all’etica pubblica. Introduzione

The article presents political corruption as a problem of public ethics of institutions. It first explains the theory of institutional action that underlies the conception of political corruption as a deficit of “office accountability”. Having clarified the officeholders’ duties in their institutional capacity, it portrays political corruption as an “internal enemy” of public institutions. A discussion follows of the normative implications for an approach to anti-corruption based on the officeholders’ direct engagement.

Social-Economic Backgrounds to US County-Based COVID-19 Deaths: PLS-SEM Analysis.

To analyze the data, the study employed partial least squares (PLS) as the statistical approach, considering the presence of multicollinearity in the county-level socioeconomic data. SmartPLS4 software was utilized to illustrate paths depicting variance and covariance and to conduct significance tests. The analysis encompassed overall COVID-19 deaths and deaths among White, Black, and Hispanic Americans, utilizing the same latent variables and paths. The results revealed that the number of residents aged 65 years or older in a county was the most influential predictor of COVID-19 deaths, irrespective of race. Economic factors emerged as the second strongest predictors. However, when considering each racial group separately, distinct factors aligned with the five hypotheses emerged as significant contributors to COVID-19 deaths. Furthermore, the diagrams illustrating the relationships between these factors (covariates) varied among racial groups, indicating that the underlying social influences differed across races. In light of these findings, it becomes evident that a "one-size-fits-all" approach to prevention strategies is suboptimal. Instead, targeted prevention efforts tailored to specific racial and social classes at high risk of COVID-19 death could have provided more precise messaging and necessitate direct engagement.

Characterizing touchscreen actions in technology-enhanced embodied learning for mathematics instruction in K-12 setting – A systematic review (2010–2023)

Touchscreen devices have become prominent in a variety of educational contexts due to their use of hands-on and interactive learning styles, and particularly for their direct engagement, rapid orientation, and multi-touch affordances, which textbooks and oral instruction may not always provide. As such, over the past decade, both the number of touchscreen applications for mathematics learning and the body of research examining their efficacy have increased. Yet, there are still few existing systematic reviews of how these touchscreen-based mathematics applications promote K-12 student learning. In response, this paper provides an in-depth examination of extant studies which adopt practices that utilize touchscreen technology for K-12 mathematics teaching and learning. The Web of Science database was searched for research published between 2010 and 2023, and 34 papers were chosen to review the empirical bases of touchscreen-based mathematics learning. These articles were analyzed based on the educational contexts found, touchscreen actions prompted, and the mathematical meanings elicited from these actions. Most significantly, we propose a touchscreen action matrix that characterizes the actions performed on the touchscreen platform and presents the mathematical meanings derived from these action categories. We hope that this review and characterization provide guidance for researchers, designers, and educators in eliciting mathematical knowing with action-based design in touchscreen medium.

Exploring the integration of art and technology

The integration of art and technology has emerged as a formidable force in the creative realm, presenting a wide array of opportunities and challenges. With the advent of the internet, collaborative artistic practices have flourished, while financial burdens on artists have been alleviated through democratized production software, reducing their reliance on corporate entities. Technology has empowered artists with increased creative freedom and direct engagement with their fans through social media platforms. Nevertheless, concerns have been raised regarding the authenticity of creative practices, sparking debates about the appropriate extent of technological intervention. The mainstream acceptance of artificial intelligence (AI) and augmentation technologies has further transformed the creative landscape. AI tools now cater to both professionals and amateurs, enabling diverse creative endeavours, ranging from the generation of visual art to assisting in music composition. This Special Issue delves into the profound changes that technology has brought to artistic and creative expression. The articles explore topics such as AI-generated communication, the role of AI in advertising campaigns, AI tools in music composition, technological innovations in art, light augmentation in urban spaces, augmented reality (AR) in literature and the integration of AR in design magazines. The overarching aim is to stimulate critical discussions regarding the future of art, creativity and the implications of technological advancements.