Community Experience Research Articles

Proposal of a Disruptive Didactic Innovation for the Development of Leadership Skills Through the Arts: Skills & Art

The need for cognitive and leadership skills requires the exploration of creative implementation models that ensure training and emphasise the value of individuals as the main asset within organisations. This research aims to introduce and validate a disruptive didactic innovation, which fosters the development of these skills through experiential communication via “Skills&Art”. The methodology used is Design Research, an emerging approach in educational research that encompasses developing and implementing a new or improved model, validating techniques, tools or models and determining conditions that facilitate successful implementation. The research was conducted in both classroom and museum settings. It consisted of a four-phase activity focused on crafting a speech that linked a skill with an artwork. A qualitative study of the speeches and a Likert self-assessment questionnaire were performed. The results demonstrate that the proposed disruptive didactic innovation Skills&Art is effective and efficient, and its self-assessed learning promotes innovation, creativity, initiative, problem-solving and analytical thinking. The novelty and contribution of this study lie in implementing these thinking skills within a single activity.

Prospectively investigating the impact of AI on shared decision-making in post kidney transplant care (PRIMA-AI): protocol for a longitudinal qualitative study among patients, their support persons and treating physicians at a tertiary care centre

IntroductionAs healthcare is shifting from a paternalistic to a patient-centred approach, medical decision making becomes more collaborative involving patients, their support persons (SPs) and physicians. Implementing shared decision-making (SDM) into...

Consensus-Based Guidelines for Communicating a Misdiagnosis of Multiple Sclerosis to Reduce Psychological Distress.

Multiple sclerosis (MS) misdiagnosis is common, and when discovered, frequently leads to substantial disruption to patients' lives and anxiety for clinicians. Our objective was to develop expert consensus-based guidelines about how to communicate a misdiagnosis of MS to a patient, to reduce the potential for both psychological distress and litigation. A modified Delphi method using a systematic literature review on doctor and patient experiences of the MS diagnosis communication was used to populate items for a first-round questionnaire. Our Delphi panel represented three perspectives (clinicians, people with MS, and published experts in health communication), and we recruited 18 panelists in total (6 per perspective). Consensus was defined a priori as 75% of panelists giving an item the same rating. A feedback round was undertaken with six external reviewers, naïve to the guideline development process, and the panelists. Items were reviewed by the study team and synthesized to create the finalized guidelines. Consensus was reached for 45 items rated as "very important" and presented in the feedback round. The study team synthesized the 45 items to 27 items. Ten items related specifically to the communication of the MS misdiagnosis and 17 items to generic guidelines highlighted as important in the MS misdiagnosis appointment. Seven recommendations form the guidelines presented here. Seven consensus-based recommendations offer guidance to practising neurologists in their communication with patients in a situation that has the potential to be highly distressing, for both clinician and patient.

Communicating a cancer diagnosis using a human centered design approach.

229 Background: Anticipating and getting "the call" communicating a cancer diagnosis is reportedly one of the most stressful times in a person’s life. If not pre-scheduled patients are often in unfortunate locations, doing distractive activities and are with unsympathetic companions. Additionally, patients ask for a single point of contact, impactful resources, and immediate next steps and appointments scheduling. Methods: Pilot/Study: 120 breast cancer patients: Control group: 30 positive, 30 negative DX Test group: 30 positive, 30 negative DX Test approach: co-designed with 10 patients, 5 physicians and 5 staff. Interviews: 7 care team roles. Data collection: customized patient interview assessment tool. Steady State: sustaining work done. Conducted: January 2019 through December 2022. Evaluation Methods -11 tests: t-Tests, One-Way ANOVA, and Capability. Changes Made: call be at a pre-scheduled time delivered by ongoing point of contact offering immediate next steps and appointment scheduling offering meaningful support and resources delivered with deep empathy/compassion. Results: The project was highly successful based on the results it achieved. Results: Improved by 64% (original goal of 30%) the composite measure of care satisfaction of patients receiving a breast cancer diagnosis call in Kaiser Permanente Maui, Hawaii. Composite: 1) 61% improvement in “satisfaction with your circumstance”, 2) 63% improvement in “satisfaction with the conversation”, and 3) 70% improvement in “feeling supported” using a local measurement tool. Conclusions: The 64% improvement in the patients' experience for cancer diagnosis communication was accomplished by understanding the needs of the patients and care team, establishing new communication protocols and resources, and ensuring the process empowered patients. The study showed that both patients and care teams want a communication process that included the elements in the test approach. This project was deemed a Kaiser Permanente best practice and is in consideration for spread. Improved by 64% (goal was 30%) the composite measure of care satisfaction of patients receiving a breast cancer diagnosis call in Kaiser Permanente Maui, Hawaii. Breast Cancer Diagnosis Communication - Key Improvement Metrics: Control Group Test Group Outcome Measure: the composite measure improvement 64% of care satisfaction of patients receiving a DX Results Call 2.39 3.93 Composite Measure 1: 61% improvement in “satisfaction with your circumstance” 2.35 3.78 Composite Measure 2: 63% improvement in “satisfaction with the conversation” 2.50 4.07 Composite Measure 3: 70% improvement in “feeling supported” 2.33 3.95 Process Measure: the error rate over time had a statistically significant difference between the Control and Test groups 30.3 8.90 Balancing Measure: Negative result patients have a similar experience as the Positive result patients No significant difference No significant difference

Abuela Alma

Disney digital animated films seem to be increasingly open to a multicultural strategy in which the life experiences of different ethnic and racial communities are addressed. One of the biggest hits with Latinx protagonists is Disney’s Encanto (2021), codirected by Byron Howard, Jared Bush, and Charise Castro Smith. Based on a story about the crisis of a Colombian family with magical powers, the film can be read from the perspective of postmemory, as an allegory about the inheritance of cultural traumas. This video essay analyzes the figure of Alma, the grandmother and matriarch. This representation of the aging woman is halfway between the tradition of Disney’s villainesses and godmothers. Its complexity lies in the embodiment of power dynamics within the family and the generational struggle between the importance of a legacy and the need to overcome the painful past.

Secondary School Athletic Trainers' Experiences Managing Workplace Organizational-Professional Conflict.

Athletic trainers (ATs) face organizational-professional conflict (OPC), often surrounding return-to-sport decisions. To prioritize patient safety and establish a healthy work environment, OPC must be mitigated, yet few researchers have determined how ATs manage conflicts with stakeholders. To explore ATs' experiences with OPC in the secondary school setting. Qualitative study. Telephone interviews. Sixteen ATs (9 females, 7 males; age = 43 ± 11 years; years certified = 17 ± 9; years in their current positions = 9 ± 6). We digitally recorded telephone interviews and had them professionally transcribed. Data saturation guided recruitment efforts and was met. To ensure rigor and trustworthiness of the data, we completed basic member checks along with multiple-analyst triangulation. We analyzed the qualitative data using an interpretive phenomenological approach. Four themes emerged effective communication, professional relationships, stakeholder education, and professional experience. Participants used effective communication described as frequent, open, and direct, during interactions with stakeholders to manage OPC. Organizational-professional conflict was reduced when ATs built professional relationships with stakeholders centered on trust and respect. Participants used stakeholder education as a primary strategy for managing OPC by educating stakeholders about prognosis and return-to-sport timelines postinjury and providing rationale for decisions made. Additionally, years of experience served as a mitigating factor of conflict, in that as ATs gained experience and confidence, they perceived less OPC. Participants suggested various interpersonal relationship development strategies that can be implemented to manage OPC, especially when starting a new position or building rapport with stakeholders. Specifically, educating various stakeholders on reasons for clinical decisions via effective communication and developing strong professional relationships built on mutual respect assisted in avoiding OPC. Since professional experience appears to alleviate conflict, OPC management strategies should be taught during professional preparation and used early during transition to autonomous practice.

Effect of oncology provider conversations on patients’ vaccination decision-making: Patient perspectives at a safety-net system.

266 Background: Low immunization rates among adults are associated with worse outcomes, particularly among immunocompromised individuals, such as those diagnosed with a cancer. To better understand vaccination communication and decision-making experiences among adult cancer patients treated at a safety-net system, we conducted structured interviews to: (1) explore patients’ perceptions of their oncology providers’ role in adult immunization, and (2) understand the potential factors that underlie patients’ hesitancy to receive vaccines. Methods: Parkland Health is the safety-net system for Dallas County, providing care for a primarily minority and un-/under-insured population. Cancer patients who had previously deferred or declined immunization participated in either in-person or telephone interviews in their preferred language (English/Spanish), using a structured 8-question interview guide. Questions centered on oncology providers’ role, vaccine hesitancy, and vaccine decision-making. Interviews averaged 12 minutes and were recorded for transcription. Aggregated interview responses were coded by question and interpreted through content analysis which noted frequency (i.e., times concept stated) and extensiveness (i.e., repetition across questions). Results: Thirteen patients were interviewed – 7 in English, 6 in Spanish. Patient’s perceived their oncology providers as highly important to their vaccination decision-making as they were: (1) more likely to get a vaccine if it is recommended by their provider (P2: Well, if the doctor hadn’t told me I wouldn’t have gotten vaccinated ; P3: If they didn’t recommend it, I would not get it ; P12: If they recommend it, it's worth looking into or thinking about ), and (2) identified their oncology provider as a preferred means for learning about vaccines (P8: Asking the doctor or the doctor communicating with us patients about a vaccine... in my personal opinion, I would say, go ahead and vaccinate me ). Patient-identified reasons for hesitancy included concerns about side effects (P2: “several people told me that is why we got cancer” ), fear of needles, previous negative experiences, and preference for alternative medicine approaches. Conclusions: Results from this preliminary study suggest that while patients may not initiate vaccination conversations with their oncology providers, they do identify their providers as influential in their decision-making. Oncology providers may not consider immunization as their primary responsibility but can be a primary source for effective vaccine communication in conjunction with the oncology care team. Findings from our patient interviews informed interventions in a quality improvement project to increase immunization uptake among cancer patients at our safety-net system.

Putting “First Peoples” First: Participatory Design of a Digital Storytelling System for Inuvialuit Communities

ABSTRACTThis poster presents a community‐focused participatory design methodology as a basis for developing a digital storytelling system for the Inuvialuit Settlement Region in Canada's Western Arctic. It provides an overview of the various stages of digital storytelling system prototype design informed by an Inuvialuit elder's storytelling gathering and a community experience open house. Among the prototype redesign ideas are empathy maps we are using to allow us to connect stories with designs and community needs in mind.

Vocabulary Herfindahl Index (VocaHIn): Linguistic Dominance and Collective Effervescence in WallStreetBets

Our analysis of 150,000 WallStreetBets comments reveals dominant phrases when members of the community experience collective excitement and solidarity (Collective Effervescence). Using the novel Vocabulary Herfindahl Index (VocaHIn), we find that stock returns volatility increases after CE, and vice versa.

Bioactive Compounds and Valorization of Coffee By-Products from the Origin: A Circular Economy Model from Local Practices in Zongolica, Mexico.

The by-products of green coffee processing are rich in compounds that can be recycled for their possible use in the production of beverages, fertilizers and weed control in production areas. The objective of this work was to identify the organic and inorganic bioactive compounds of green coffee and the coffee by-products related to the production of origin, such as dried cascara (skin-pulp), parchment and silverskin (unroasted), in order to investigate the role their biomolecules may have in reuse through practices and local knowledge, not yet valued. The metabolomic profile by HPLC-ESI-HRMS of the aqueous extract of the dried cascara highlighted 93 non-volatile molecules, the highest number reported for dried cascara. They belong to groups of organic acids (12), alkaloids (5), sugars (5), fatty acids (2), diglycerides (1), amino acids (18), phospholipids (7), vitamins (5), phenolic acids (11), flavonoids (8), chlorogenic acids (17), flavones (1) and terpenes (1). For the first time, we report the use of direct analysis in real-time mass spectrometry (DART-MS) for the identification of metabolites in aqueous extracts of dried cascara, parchment, silverskin and green coffee. The DART analysis mainly showed the presence of caffeine and chlorogenic acids in all the extracts; additionally, sugar adducts and antioxidant compounds such as polyphenols were detected. The mineral content (K, Ca, P, S, Mg and Cl) by EDS spectrometry in the by-products and green coffee showed a relatively high content of K in the dried cascara and green coffee, while Ca was detected in double quantity in the silverskin. These metabolomic and mineral profile data allow enhancement of the link between the quality of green coffee and its by-products and the traditional local practices in the crop-growing area. This consolidates the community's experience in reusing by-products, thereby minimizing the impact on the environment and generating additional income for coffee growers' work, in accordance with the principles of circular economy and bioeconomy.

Human Resource Management Based on Local Wisdom in Tourism Businesses in Panelokan, Bangli Regency

This research aims to explore how local wisdom can be integrated into human resource management (HRM) practices in tourism businesses in Panelokan Village, Bangli Regency. Specifically, this research seeks to understand the views and experiences of business actors, employees and local communities in implementing local wisdom-based HRM, as well as identifying challenges and strategies that can be adopted to overcome obstacles in its implementation. This research uses a descriptive qualitative approach with a case study method to understand the application of human resource management (HRM) based on local wisdom in tourism businesses in Panelokan Village. Data was collected through in-depth interviews with tourism business owners or managers, employees and local community leaders, as well as analysis of related documents, such as work guidelines and HR policies. Thematic analysis techniques were used to identify the main themes that emerged from the data. The validity of the data is guaranteed by triangulation of sources and methods, as well as member checking to confirm findings. The results of the research show that the application of local wisdom such as "ngayah," "menyama braya," and "Tri Hita Karana" in HRM is able to increase job satisfaction, loyalty, and employee productivity in tourism businesses in Panelokan. Integration of local cultural values in recruitment, training, performance appraisal and reward systems helps create a more inclusive and culturally appropriate work environment. However, this research also found several challenges in implementing local wisdom-based HRM, especially related to a lack of understanding and managerial skills in combining traditional principles with modern management practices, as well as pressure to meet international management standards.

The COVID-19 experience through the lens of disability Twitter: A qualitative analysis.

The societal response and constraints of the COVID-19 pandemic reinforced ableism for disabled people who were yet again treated as an afterthought in society. Systemic ableism impacted their well-being, access, and ability to be active members of their community. Disabled experiences and voices must be heard and amplified to improve preparedness and address ableism. Disability Twitter is one avenue where the disability community can collectively listen and support one another. These voices can and should be used to influence policy and practice. This study used Disability Twitter to represent and honor the experiences of the disability community, using the COVID-19 pandemic as a moment in time. Qualitative thematic analysis of U.S.-based Twitter posts was conducted using retrospective social media posts. A total of 238 initial tweets from January 1, 2020 and September 30, 2022 were analyzed by the research team. Five themes were observed including ableism, devaluation, worthiness, act of reclaiming, and emotion. Disabled people reported instances of ableism, devaluation, and victimization by individuals, systems, and government entities throughout the pandemic. Disabled individuals utilized Twitter to share their collective experiences, urging society to address and respond to the needs of the disability community. Using social media to center the perspectives of the disability community can invoke system-wide change and inform policies. Implications for combating systemic ableism and promoting allyship for clinical professionals, research scholars, and educators are provided. (PsycInfo Database Record (c) 2024 APA, all rights reserved).

Study of Cultural and National Specifics of Russian and Kazakh Phraseological Phrases in University Language Classes

The article is devoted to the study of Russian and Kazakh phraseological units, which are products of linguistic folk consciousness as the materialization of the experience of generations and individual representatives of the ethnic group. It is revealed that the phraseological fund of a language records and reflects the social and cultural experience of a particular community, and is reflected both in the universal, common to all humanity, and in the unique, national-cultural picture of the world. The conceptual and phraseological aspect of the study of stable phrases through the national cultural code is highlighted in the light of modern linguocultural research, and a comparative description of phraseological units of the Kazakh and Russian languages is provided. The expediency of conducting experimental studies (questionnaires) is substantiated to reveal the degree of assimilation of phraseological units by recipients and the effectiveness of their use in speech. An educational longread has been created as a tool for digital linguodidactics in the study of Russian and Kazakh phraseological units, effective methods for introducing phraseological units into speech have been selected. The materials presented in the article can contribute to the construction of a productive intercultural dialogue, in which it is important not only to understand the language of another people, but also to master the cultural values of this people, perceive their national specifics, and assimilate those components that make up the national cultural code of the picture of the world under study.

"If They Help Us, We Can Help Them": First Nations Peoples Identify Intercultural Health Communication Problems and Solutions in Hospital in Northern Australia.

Effective intercultural communication between First Nations peoples and healthcare providers in colonised countries is required to deliver equitable healthcare and improve patient experiences and health outcomes. This paper presents First Nations peoples' perspectives and proposed solutions to problematic communication experiences at Royal Darwin Hospital in northern Australia. The study's methodological foundations comprise decolonising principles rooted in Critical Race Theory, Freirean pedagogy, and cultural safety. Eleven individuals from diverse First Nations backgrounds receiving treatment at the largest hospital in the Northern Territory, participated in in-depth interviews conducted in their preferred languages. Data were inductively analysed, adapted from a constructivist grounded theory approach and guided by First Nations knowledges. First Nations patients at Royal Darwin Hospital described a culturally unsafe hospital due to ineffective intercultural communication. Patient "counterstories" recounted instances of confusion, aggression, healthcare provider resistance to shared decision-making opportunities, pressure to abandon cultural protocols, and institutional neglect. Poor communication incited anger among staff and patients, and contributed to experiences of racism, missed appointments, clinical mistakes, patients prematurely discharging before completing treatment, and patients experiencing financial troubles and homelessness. In a spirit of generosity, patients proposed solutions focused on relationship building and mutual understanding so that new decolonised systems, which draw on First Nations and Western knowledges, can be codesigned. This study serves as a call to action for policymakers, administrators, and healthcare providers to prioritise improving intercultural communication by addressing the behaviour of staff and changing systemically racist policies in the pursuit of health equity and cultural safety for First Nations peoples.

Assessing the impact of climate change on reproductive health: A content analysis of climate journalism coverage.

complications, infectious diseases, maternal and infant health in disasters, gender-based violence, healthcare access inequities, mental health impacts, and food security issues. Findings reveal an uneven distribution of coverage across continents, with potential language bias in English-dominated sources. Acknowledging limitations, future research directions emphasize a more inclusive approach, incorporating diverse linguistic perspectives and qualitative exploration of community experiences. The study underscores the imperative for global representation in media discourse This research explores the intricate relationship between climate change and reproductive health through an analysis of 1000 global news articles from 2018 onwards. Utilizing Latent Dirichlet Allocation (LDA), key topics in media coverage are identified, encompassing fertility challenges, pregnancy and advocates for comprehensive, evidence-based strategies to address the complex interplay between climate change and reproductive health.

Indigenous Methodologies in International Research on Indigenous Family and Community Engagement

Indigenous research methodologies have been theorized by prominent Indigenous scholars over the past few decades and advocated for in research focused on Indigenous communities for their emancipatory power to reestablish Indigenous peoples’ expertise and self-determining and sovereignty rights over education and research. Western intrusion in Indigenous education and community focused research through colonial schools and Western research methodologies has negatively impacted the schooling experiences of Indigenous children, their families and communities, as well as the ways they are studied and depicted in research. Responding to calls for Indigenous methodologies in research focused on Indigenous communities, this literature review introduces an Indigenist Methodological Framework, developed from canonical scholarship on Indigenous methodologies, that we use to explore the applications (and potential misapplications) of Indigenous methodologies in 20 international studies about Indigenous family and community engagement. We aimed to determine if adherence to the elements of an Indigenist Methodological Framework served to disrupt extractive, exploitative, and damage-centered practices in and portrayals of Indigenous communities (common in Western research methodologies). Further, we critically analyzed the findings of these studies to see if they offered more culturally responsive and strength-based conceptualizations of Indigenous families and communities. We uncovered applications and misapplications of Indigenous methodologies that impacted researchers’ commitments to and actions towards establishing and maintaining relational accountability throughout and beyond the research while also influencing findings that, in most cases, challenged narrow and deficit-based perceptions and portrayals of Indigenous students, families, and community members.

Navigating delayed diagnoses, self-neglect, and lost livelihoods: a qualitative exploration of fisherfolk’s health perspectives and management of non-communicable diseases in Kerala, India

IntroductionNon-Communicable Diseases (NCDs) place a significant burden on India's healthcare system, accounting for approximately 62% of all deaths in the country in 2017. The southern Indian state - Kerala - has some of the highest rates of NCDs. Within the state, the fisherfolk community has a high prevalence of risk factors such as tobacco use and alcohol consumption. Working in the fisheries industry demands physical exertion, night shifts alongside extended periods of time at sea (for seafaring fisherfolk). Evidence is scant on how these conditions relate to the health-seeking experiences of fisherfolk, particularly in the context of NCDs. We conducted a qualitative study in two districts of Kerala to fill this gap.MethodsIn-depth individual and small group interviews– as per participant preference – with male and female fishing community members living with NCDs were conducted between October 2022 and February 2023 in two districts of Kerala. Interviews were conducted to explore community members’ experiences with health-seeking for NCDs. Transliterated English transcripts were coded using ATLAS.ti software and analysed using thematic analysis with inductive generation of codes, with indexing against Levesque, Harris, and Russell’s 2013 access to healthcare framework.ResultsThirty-three interviews with 42 participants were conducted. We found that NCDs were usually diagnosed late- either when admitted/consulted for other illnesses or when the symptoms became unbearable. Health-seeking patterns differed between seafaring and inland fishing subgroups, who were sampled from two districts in the state. Seafaring fisherfolk preferred public facilities for regular checkups and medicines while in-land fisherfolk relied on private facilities, although it was considered expensive. Ability to seek care was impacted by the working hours of the health centre which did not suit their working hours. Health constaints and related expenses also impacted their financial status and occupation, with some opting for less strenuous jobs.ConclusionThis study highlights the NCD-related health-seeking experiences of the fisherfolk community in Kerala, India. Fisherfolk reported self neglect, delayed diagnosis, cost and livelihood constraints owing to the onset of NCDs, even as dual practice and medicine access in the public sector were appreciated. Overall, larger studies and policymaking processes should consider in depth the experiences faced by particular economic groups like fisherfolk, who may face unique health and care-seeking challenges.

Nurse-patient communication experiences from the perspective of Iranian cancer patients in an outpatient oncology clinic: a qualitative study

BackgroundEffective communication between nurses and cancer patients is essential for patient satisfaction and optimal health outcomes in outpatient oncology settings. This study explored the communication experiences of Iranian cancer patients receiving outpatient treatment.MethodsSemi-structured interviews were conducted with 14 adult cancer patients undergoing chemotherapy, radiotherapy, or follow-up treatment at an outpatient clinic in Urmia, Iran. Qualitative content analysis was used to analyze the data. This study adhered to the standards set forth in the Consolidated Criteria for Reporting Qualitative Research (COREQ) checklist.ResultsThree main categories emerged from the interviews with Iranian cancer patients: communication dynamics, barriers to communication, and effective communication outcomes. Patients expressed a desire for nurses who actively listen, provide emotional support, and offer thorough education about their disease and treatment options. However, they also identified barriers to effective communication, including negative nurse behaviors (such as lack of empathy), heavy workloads, gender and language discordance, and logistical challenges within the clinic setting. When communication was positive, patients reported increased commitment to their treatment plans, improved coping mechanisms, reduced stress levels, and greater satisfaction with their overall care.ConclusionsThis study revealed the multifaceted nature of communication in outpatient oncology settings from the patient’s perspective. Findings underscore the need for interventions that enhance nurse communication skills, address workload issues, promote cultural sensitivity, and optimize clinic logistics. These efforts can significantly improve patient experiences and treatment outcomes during cancer treatment.

Dominant discourses framing the reuse of industrial heritage in the context of mega-events: a relationship matrix approach

The reuse of industrial heritage sites has become increasingly prevalent in the context of hosting mega-events. This paper aims to investigate this trend, specifically in the context of Olympic Games or World Expos, and its impact on urban regeneration strategies. It introduces a methodological tool, namely, the relationship matrix, to identify key factors from ‘best practices’ criteria for managing industrial sites and planning mega-event legacies. We use this matrix to address two research objectives, namely, to determine the role of industrial heritage reuse in mega-event urban projects and to evaluate whether this creates a favourable environment for place-making. This matrix enables us to compare and analyse the Shanghai 2010 World Expo and the London 2012 Summer Olympic Games as illustrative case studies. While guidelines and strategies for mega-events and industrial heritage have evolved towards a proactive people-centred approach, our findings still reveal a bias towards material renewal in dominant discourses during the planning phase. This bias often overlooks or even excludes the memories and experiences of local communities.

Access to Water Service Modalities in Rural Alaska: Understanding Community Experiences and Perceptions

Access to Water Service Modalities in Rural Alaska: Understanding Community Experiences and Perceptions