Collective Experience Research Articles

Experiences of Informal Caregivers Caring for Individuals With Chronic Schizophrenia in Asia: A Systematic Review and Meta-Synthesis.

In Asia, many caregivers are culturally obliged to assume the role of taking care of individuals experiencing chronic schizophrenia, even as they grapple with stigma and compassion fatigue. Despite the significance of this phenomenon, the collective experiences of Asian caregivers remain poorly understood. To synthesise qualitative evidence on the experiences of informal caregivers when caring for individuals with chronic schizophrenia in Asia. A search was conducted on seven databases for studies published between 2013 and 2023. The included studies were appraised using the Critical Appraisal Skills Program tool. Data extraction was based on the Joanna Briggs Institute (JBI) Qualitative Extraction Form. The data synthesis was based on the framework by Sandelowski and Barroso. Our review included the experiences of 1345 informal caregivers from 57 included studies. The analysis yielded the overarching theme of 'Navigating Challenges, Forging Resilience'. Three themes were identified: (i) challenges in caregiving, (ii) lack of support and (iii) coping and resilience. Our findings highlighted the Asian caregivers' stressors, particularly cultural and traditional factors, a facet often overlooked in the literature. Mental healthcare practitioners must provide caregivers with comprehensive information. Anticipatory guidance is essential during the initial stages of the diagnosis. To negate geographical limitations, caregiver-training sessions can be pre-recorded and posted to online platforms. Finally, cultural and spiritual beliefs can be integrated into the treatment plans for individuals with schizophrenia in the community. Within the institutional setting, mental healthcare practitioners are encouraged to provide caregivers with comprehensible information or training in person and through written or online platforms, which can transcend geographical limitations. Anticipatory guidance is essential, especially during the initial stages of the diagnosis, when confusion and uncertainties are prevalent. Periodic home visits by mental healthcare practitioners can help ease caregivers' concerns and enhance their caregiving confidence. Finally, cultural and spiritual beliefs should be integrated into the treatment plans for individuals with schizophrenia in the community as it promotes cultural acceptability, encourages referrals to appropriate institutions and reduces the stigma of mental healthcare.

THE DIPLOMAT WITHIN: LEADING WITH UNITY IN A MULTIPOLAR WORLD

AbstractThe authors, who have varied and extensive experience in areas such as business and law, note that their “article leverages our collective experiences worldwide as leaders, lecturers, coaches, and speakers, that underscore the increasingly urgent need for diplomacy skills in everyday human interactions.” They further discuss the importance of diplomacy and diplomatic skills in modern workplaces. The authors “introduce the following three‐tiered Personal – Organizational ‐ External Diplomacy Framework, inspired by modern diplomatic thought. It cuts through dense literature on diplomacy and provides a navigational tool on how to add diplomacy skills into the organization’s DNA to nurture peaceful coexistence and achievement of goals, from interpersonal to global engagements.” They discuss three steps in detail, which in their words are (1) Mastering Personal Diplomacy, (2) Developing Organizational Diplomacy, (3) Developing External Diplomacy. For instance, core skills in step 1 are, in their words, self‐awareness, emotional intelligence, systems thinking, positive regard for others, effective communication, and trust building skills. Step 2 includes, in their words, Leadership Diplomatic Composure, Psychological Safety and Performance, Learning and Development, Engagement and Dialogue, Diversity and Teamwork, and Strategic Implementation. Step 3 includes, in their words, Engagement with External Stakeholders, Leadership in Global Challenges, and Public Diplomacy and Policy Advocacy.

Communitas revisited: Victor Turner and the transformation of a concept

Victor Turner's concept of communitas has been used in and beyond anthropology for years in a variety of ways. It is an effective concept for understanding one form of collective human experience, particularly the transcendent emotional experiences in liminal contexts that may stimulate the emergence of a sense of connection and co-humanity. There is immense contemporary value in the concept, however, many key elements are often overlooked and the complexities of ‘communitas’ ignored. This can lead to surface-level or misleading applications which threaten to undermine the utility of the concept. As such, I explore Turner's theoretical understandings and reflections, before considering the diverse ways other scholars have used communitas. I advocate a more nuanced understanding of communitas and investigate how this would benefit our understandings of communitas in contemporary social contexts. I engage with the work of Turner and others to contribute to theoretical discussions of communitas, while also reflecting on the value of concepts and the benefits of both ambiguity and clarity in communicating anthropological knowledge through such concepts.

Implementing sensor-based digital health technologies in clinical trials: Key considerations from the eCOA Consortium.

The increased use of sensor-based digital health technologies (DHTs) in clinical trials brought to light concerns about implementation practices that might introduce burden on trial participants, resulting in suboptimal compliance and become an additional complicating factor in clinical trial conduct. These concerns may contribute to the lower-than-anticipated uptake of DHT deployment and data use for regulatory decision-making, despite well-articulated benefits. The Electronic Clinical Outcome Assessment (eCOA) Consortium gathered collective experience on deploying sensor-based DHTs and supplemented this with relevant literature focusing on mechanisms that may enhance participant compliance. The process for DHT implementation starts with identifying a clinical concept of interest followed by a digital measure selection, defining active or passive data capture and their sources, the number of sensors with respective body location, plus the duration and frequency of use in the context of perceived participant burden. Roundtable discussions among patient groups, physicians, and technology providers prior to protocol development can be very impactful for optimizing trial design. While diversity and inclusion are essential for any clinical trial, patient populations should be considered carefully in the context of trial-specific aims, requirements, and anticipated patient burden. Minimizing site burden includes assessment of training, research engagement, and logistical burden which needs to be triaged differently for early and late-stage clinical trials. Additional considerations include sharing trial results with study participants and leveraging publicly available data for compliance modeling. To the best of our knowledge, this report provides holistic considerations for sensor-based DHT implementation that may optimize participant compliance.

Error traps in patients with congenital heart disease undergoing noncardiac surgery.

Patients with congenital heart disease are living longer due to improved medical and surgical care. Congenital heart disease encompasses a wide spectrum of defects with varying pathophysiology and unique anesthetic challenges. These patients often present for noncardiac surgery before or after surgical repair and are at increased risk for perioperative morbidity and mortality. Although there is no singular safe anesthetic technique, identifying potential error traps and tailoring perioperative management may help reduce morbidity and mortality. In this article, we discuss five error traps based on the collective experience of the authors. These error traps can occur when providing perioperative care to patients with congenital heart disease for noncardiac surgery and we present potential solutions to help avoid adverse outcomes.

Clinician and Patient Perspectives on the Exchange of Sensitive Social Determinants of Health Information

Social determinant of health (SDOH) data are essential to individualized care and reducing health disparities. However, there is little standardization in the way that SDOH data are collected, and barriers to increasing the collection of such data exist at both the patient and clinician levels. To evaluate clinician, patient, and care partner perspectives on the barriers to and facilitators of patients sharing SDOH information with their clinicians. This qualitative study included clinicians, patients, and care partners across the United States. Focus groups were conducted between September 2022 and February 2023 to understand the experience of collecting, documenting, and exchanging SDOH data. Rapid assessment procedures were used to analyze focus group transcripts, creating summaries, codes, and themes mapped directly to the project research questions. A total of 235 individuals participated, including 109 (46.4%) clinicians (60 [55.0%] male; 25 [22.9%] Asian, 2 [1.8%] Black, and 74 [67.9%] White) and 126 (53.6%) patients and care partners (45 [35.7%] male; 1 [0.8%] Asian, 48 [38.1%] Black, and 64 [50.8%] White). Clinicians and patients agreed that SDOH data are important for clinicians to know. Both clinicians and patients wanted a structured, standardized way to collect SDOH data in the future, accompanied by time for more in-depth discussion during the visit. However, they highlighted numerous issues that impact collecting these data, including beliefs about how the information will be used, the clinician-patient relationship, having enough of the right staff, time needed to collect SDOH information, and technology used to collect the data (eg, usability, standardization). This qualitative study of the experience of collecting, documenting, and exchanging SDOH data underscores the ongoing barriers to widespread adoption of uniform approaches to SDOH data documentation as well as factors that may help lower those barriers, such as trusting patient-clinician relationships, greater transparency in how the data will be used, and targeted resources. A multifaceted approach to addressing the concerns raised by clinicians, patients, and care partners is required to ensure that such data can be captured in a way that improves care and allows for progress toward an equitable health care system.

The rise of study skills at Strathclyde (and our part in its downfall): a bildungsroman

In 2012, three members of staff were recruited by the University of Strathclyde to sit in a room and talk to students. That was the whole of the plan. That is not how this story ends. The talking was supposed to ‘help’ students to do things ‘right’. That is not what we spoke about. That year, the student-facing part of the Centre for Academic Practice and Learning Enhancement (CAPLE) established in 1987, which at its height consisted of six permanent academics with varied research interests within the, then emergent, field of Learning Development (LD), was replaced by a generic Study Skills Service, staffed by LD practitioners with a considerable collective experience and who shared a vision that was more critical and looked to a more authentically (learning) developmental approach (Asher, 2024). In so doing, the university had created a service model which we would spend the next nine years dismantling (or, to be more accurate, redeveloping). What follows is our story. The story of how the Learner Development Service (LDS) came into being, and how the spaces and places we have inhabited (both hostile and hospitable) have shaped our practices (Gravett et al., 2023) and how, in June 2022, we took up residency in a dedicated LDS Centre designed by us for us. To date, we have occupied three physical locations and been positioned under three different university services. These spaces and places have defined what we could do but they have also informed the design of our current physical, virtual and conceptual environment, as this paper details. This session highlighted the need for Learning Development practitioner resilience and perseverance in difficult circumstances. It foregrounds the usefulness of initiating, developing, and nurturing productive and mutually rewarding professional relationships with academic departments, course leaders and individual academics in order to advance the growth of Learning Development provision in institutions.

Shifting Paradigms: Semiotic Reading of the Built Environment Transformations in Lithuania 1986–2004

Summary The research delves into the complex and multi-layered transition of Lithuania from a Soviet to a post-Soviet society, focusing on the architectural landscape as a reflection of ideological shifts. It explores the period from Gorbachev’s initiation of perestroika in 1986 to the Baltic States’ entry into the EU and NATO in 2004, a time marked by significant transformations within the architectural, social, and political realms. First, using Greimasian Square, the study categorises and analyses the reactions toward Soviet Modernist architecture, observing the gradual shift from a representation of state ideology to a canvas reflecting a myriad of individual and collective experiences, also assuming the artistic value of the architects’ output. Second, utilising frameworks from Western architectural criticism figures such as Peter Blake, Robert Venturi and the Situationists, the study contextualises and collates with architectural trends in public interiors or private constructions in Lithuania. Additionally, presumptions are correlated with a crisis in the architectural profession, characterised by a rise in private constructions without architects. Through semiotic view architectural discourse becomes a vital element in understanding the broader cultural and political shifts in post-Soviet Lithuania.

Beyond mitigation: building a case for collective rights and remedies for digital ID-enabled harms

ABSTRACT National digital ID systems have been promoted by both private and public sector actor actors as a means of fostering economic development and individual empowerment, and of administering a growing digital welfare state. However, these digital ID systems have also been associated with different forms of injustice and remain flashpoints for the contestation of public sector digitalization and datafication initiatives. The complex, intersectional impacts that such systems may have on social exclusion and human rights have made it challenging to articulate rights-based approaches that cover the range of potential injustices or to institutionalize legal and administrative mechanisms capable of remedying violations. This paper posits two ways in which the legal contestation of digital ID has revealed potential barriers to obtaining adequate remedies for digital ID related harm. First, a core methodological challenge is the way in which powerful narratives about the capabilities of digital ID have worked in tandem with individualizing logics of databases, making it difficult to center the collective experiences of affected groups and balance competing interests. Second, is the way in which legal frameworks have structured governance of national digital ID systems, fragmenting responsibility across institutions and individuals in ways that compromise access to justice, rule of law, and pathways to remedies. In bringing together a data justice framework with insights from legal analysis, the paper seeks to assess both limitations and potential opportunities to work through existing legal frameworks to better address the collective harms of digital ID systems.

Introducing listening as a weak method for advancing sustainability and interdisciplinary scholarship

AbstractThere is now widespread recognition of the need for inter/transdisciplinary (I/TD) approaches to solving global problems like climate change and biodiversity. Yet methods for successfully integrating knowledge across disciplines, and between research and practice, are in need of further development, particularly approaches that can ameliorate epistemological and ontological divides. Here we propose a framework for good listening as a ‘weak method’ that can provide guidance and structure to I/TD collaborations, but does not assume the form and goals a given collaboration will take. Synthesising the results of a scoping, interdisciplinary literature review, we highlight four key components of listening—receiving, processing, interpretation, and feedback/response—and provide a set of normative values regarding ‘good listening’ for each. Our goal is to provide a framework that is grounded in detailed scholarly discussions of listening politics and practice, but that is specifically formulated in response to the needs and concerns of I/TD researchers. We then apply our framework to four commonly encountered challenges in sustainability science, drawing on our collective experience in the field to explore how good listening can aid I/TD collaboration in regards to inclusion, group dynamics, format and pace. In doing so, we hope to inspire those working in sustainability science to approach I/TD collaboration in a new way and provide a tool for facilitating caring and transformational approaches to solving the world’s most pressing sustainability crises.

Gathering around a satellite image: Visual media cycles of the nuclear nonproliferation complex.

How have Western nongovernmental experts used remote sensing to make public knowledge about Iran's nuclear program? This article recounts several episodes in which experts and journalists congregated around satellite images to uncover hidden nuclear objects in Iran. Drawing from the theoretical tradition of co-production, I describe this recurrent collective experience as an imaginative exercise that can both coordinate and transform diverse communities of knowledge. I outline common temporal and thematic structures that define these episodes, and illuminate the role of commercial satellite imagery as material anchor that threads distributed imaginings together such that broadly-shared experience and sensibility can emerge. I argue that these collective imaginative practices have fomented civic-epistemic closure, not around affirmative nuclear facts or beliefs about Iran, but around a set of persistent questions about the 'possible military dimensions' of its nuclear past. I close by exploring the broader political effects of this form of recursive inquiry within the global nuclear order.

Humanitarianism’s Volunteers: The Italian Lay Missionary Movement in the Long 1960s

Abstract This essay focuses on the experiences, emotions and aspirations of lay volunteers who in the long 1960s contributed to the emergence of non-governmental humanitarianism in Italy. I argue that we cannot disconnect the analysis of relief practices from that of the relievers’ feelings and emotions, because they have moulded each other in specific historical, cultural and social contexts. Young lay volunteers who joined missionaries in the 1960s and the early 1970s received specific assignments, but performed their tasks driven by enthusiasm and frustration, commitment and distress, love for others and a sense of isolation. Their daily work sprang out of this complex entanglement. This essay analyses this by intertwining multiple sources: reports, journal articles, interviews, letters and diaries. These sources allow the reconstruction of lay volunteers’ collective experiences and reveal what they felt, thought, and imagined.

Dreaming with data: Cultivating critical consciousness in datafied living research

This paper addresses data reflexivity in terms of critical consciousness-raising by linking people’s everyday encounters with data to their speculative visions about datafied futures. We suggest everyday encounters with data about oneself might play an important role in facilitating both personal and collective imagination about data and devising future paths towards legitimate and meaningful datafied living. Lending inspiration from the figure of the researcher as critical companion and from speculative design, we posit that critical consciousness-raising is not something generated purely by way of informing people about datafication, but built from below, through people’s everyday experiences with datafying themselves and being datafied by others. Furthermore, it is deeply intertwined with datafication research itself, and the way we seek to establish links between individual and collective experiences and evaluations of data practices. Based on this, the paper offers three methodological entry points for exploring how critical consciousness can be cultivated and collectivized: longitudinal fieldwork with repeated interviews, data visualization derived from people’s own phones, and speculative workshops on future data practices.

Remote Passive Sensing of Older Adults' Activities and Function: User-Centered Design Considerations for Behavioral Interventions Conducted in the Home Setting.

Behavioral intervention studies often lack sufficiently sensitive and frequent measurements to observe an effect. Remote passive sensing offers a highly sensitive, continuous, and ecologically valid method of assessment that increases the ability to detect changes in the daily activities and function of those being monitored. To be most effectively deployed in research studies, applications of remote assessment technology must be designed with the end user in mind. User-centered design (UCD) is especially important in clinical trials where the needs and characteristics of participants and research staff need to be uniquely considered to ensure the feasibility and acceptability of the study. This paper describes UCD issues in remote passive sensing that commonly arise among older adult participants-including those living with dementia-as well as any strategies that were taken to overcome them. Using exemplars from the National Institute on Aging-funded Roybal Center ORCASTRAIT (Oregon Roybal Center for Care Support Translational Research Advantaged by Integrating Technology), as well as other experimental and observational research studies conducted in community settings, this paper brings together our collective experiences with studies using remote passive sensing technology that incorporate a UCD design approach. Although passive sensing eliminates some common UCD issues that arise with higher-touch technology, issues, such as usability, trust, and aesthetic acceptability, still need to be addressed for behavioral interventions using passive sensing technology to be potent and implementable.

Economic Decisions and Cultural Trauma: A Sociological Exploration of Macro-level Policies and Societal Perceptions

The article delves into the intricate relationship between macroeconomic policies and cultural trauma. It argues that economic decisions, typically confined to corporate and legislative realms, significantly impact communities by shaping collective memories, identities, and psychological distress. The study highlights historical events like The Great Depression and the COVID-19 pandemic, underscoring their transformative impacts on societal consciousness and cultural narratives. The article emphasizes the role of macroeconomic choices, such as fiscal policies and trade agreements, in creating collective experiences that transcend economic outcomes. Using examples like trade liberalization in Brazil, it demonstrates how economic policies can lead to diverse societal perceptions and narratives. The article also examines the role of media, public discourse, and societal leaders in shaping public perceptions of these decisions. Central to the study are the contributions of cultural sociologists like Jeffrey C. Alexander, who propose that cultural trauma arises more from societal narratives around an event rather than the event itself. The study stresses the need for a comprehensive approach that integrates economic analysis with sociological insights, highlighting the importance of understanding economic decisions beyond their immediate financial implications. Conclusively, the article posits that macroeconomic decisions have profound and lasting impacts on societies, influencing collective identities and memories. It advocates for policies and scholarly approaches that acknowledge the broader societal ramifications of these decisions.

Expert Panel Consensus Recommendations for Allergic Rhinitis in Patients with Asthma in India.

Allergic rhinitis and asthma are commonly coexisting conditions, significantly impacting patient health and quality of life. Despite their interrelation, diagnosing allergic rhinitis in patients with asthma remains challenging, leading to underdiagnosis and suboptimal management. The expert consensus engaged a modified Delphi method involving 29 experts including pulmonologists, ear, nose, and throat surgeons, and allergologists. Through group discussions, consensus statements were developed regarding the epidemiology, diagnosis, and management of allergic rhinitis and asthma. Final consensus statements were formulated based on the experts' collective clinical judgment and experience. This expert consensus provides updated recommendations tailored to the Indian context, addressing the gaps in existing research and clinical practice. By promoting a systematic and evidence-based approach to diagnosis and management, this consensus aims to support clinicians in effectively identifying and treating allergic rhinitis in patients with asthma, thereby improving overall disease management and patient well-being.

Towards pluriversal community informatics

In this article we reflect on pluriversal connections for Community Informatics (CI), drawing from our collective experiences working with Indigenous Peoples in Borneo and Canada. Building on Michael Gurstein’s foundational work and situating it in relation to contemporary debates around digital equity and inclusion, we present summaries of collaborative, iterative, locally-grounded participatory action research projects that illustrate the enduring methodological, ethical and conceptual questions raised in CI. Through our interactions and shared experiences, these examples also demonstrate Gurstein’s (2012) focus on connecting across geographic and cultural boundaries in ways that respect the self-determined nature of place-based communities.

Sentido y valor de los mercados costeros de lugar en Chile

This article analyses the structural dynamics of social life at five local coastal markets (LCMs) on the Chilean coast (Calbuco, Puerto Montt, Valdivia, Valparaiso and Tongoy). In a semantic narrative framework, we use ethnographic methodology to demonstrate the opacity of local markets—particularly LCMs—in terms of economic and community life. Opacity is a social condition. However, the background reveals profound significance that bears witness to and partially portrays the complexity of markets as places of business, livelihood, life projects and social mobility, where individuality is necessarily intertwined with the community. Our conclusions show that these LCMs go beyond the orthodox definitions that reduce the economy (and the markets themselves) to cost-benefit-motivated interactions between individual agents. Instead, markets go against the grain of this instrumental reductionism and offer remarkable potential for re-thinking, imagining, constructing and co-constructing areas (coastal areas in our analysis) based on collective experience.

The role of QI collaboratives in neonatology.

Quality improvement collaboratives (QICs) use their collective experiences from participating centers to accelerate the translation of evidence into practice, resulting in reduced variation and improved clinical outcomes. There are several regional, national, and international QICs in neonatology. In this review, we discuss the framework and evaluate national QICs primarily based in US and share the contributions of selected studies. We found that the QICs in neonatology play a significant role in identification of target topics, developing best practices, improving provider knowledge, building QI capacity, and improving outcomes. The key strengths of QICs are that they produce more generalizable learnings, involve a larger patient population which enhances statistical analysis, and offer resources to smaller institutions. Limitations include institutions contributing unequally to the overall results, difficulty in interpreting results when multiple improvement strategies are applied simultaneously, and the possible lack of academic recognition for individual center leadership.

Enacting writing differently through a collective liminal experience

ABSTRACT Writing differently presents numerous challenges, impossibilities, and anxieties. While literature underscores the significance of cultivating new writing forms, the actual experience of writing differently remains obscure. This paper seeks to better understand how alternative forms of writing can be enacted. More specifically, it aims to explore how writing differently affects the process of becoming an academiX, by analyzing our collective and individual experiences within Compo·X, a collective of PhD students. We perceive our doctoral experience as a liminal one, a transitional phase that reshapes our identities. We illustrate how our distinct writing practices facilitated the development of a shared identity and an environment for growth in academic world often known for its lack of inclusivity. At the end, we show how writing differently and collective writing helped us to swim against the tide and served as a platform for micro-revolutions within us and academia’s competitive and normative culture and organization.