Community Experience Research Articles

Perspective on patient-centered communication: a focus group study investigating the experiences and needs of nursing professionals

BackgroundDelivering high quality care tailored to patients’ needs necessitate patient-centered communication. High physical and mental workload, as well as organizational barriers, contribute to challenges nurses face in patient-centered communication. Participation in a communication skills training can help nurses to improve their patient-centered communication skills. Thus, the aim of this study was to investigate the experiences of nursing professionals in patient-centered communication and delineate the requisite content for a communication skills training.MethodsWe conducted focus group interviews with nursing professionals working at an academic medical center in Germany. The focus group interviews were audio-recorded and transcribed verbatim. Data analysis was performed using Kuckartz’s qualitative content analysis.Results31 nursing professionals from diverse medical disciplines (e.g., pediatrics, obstetrics, cardiology, neurology, oncology) participated in the study, unveiling a spectrum of communication experiences, including organizational and system-related challenges, constraints induced by the COVID-19 pandemic, management of personal emotions, and communication challenges with patients and relatives. They also identified aspects they experienced as beneficial for patient-centered communication (e.g., allocating sufficient time, being authentic, providing clear information). Furthermore, participants identified specific aspects, which should be included in a patient-centered communication skills training.ConclusionThe findings suggests that not only nurses from oncology and intensive care, but also from other medical disciplines, experience significant communication challenges with patients and relatives. Applying patient-centered aspects of communication was considered beneficial for effective communication. The needs identified through participants’ experiences (e.g., core communication skills and strategies, handling escalating situations, and discussing serious illness, death and dying) informed the development of a patient-centered communication skills training specifically tailored for nursing professionals across diverse medical disinclines in Germany.

Does reconciliation affect your bottom dollar? The business case for honoring Indigenous rights in Canada

PurposeIn acknowledgment of the Truth and Reconciliation Commission of Canada's Call to Action #92, the purpose of this paper is to present the business case for honoring Indigenous rights in Canada. We outline the strengths as well as risk-mitigation that come from honoring Indigenous rights and present opportunities to action economic reconciliation.Design/methodology/approachThe authors utilize professional insights, lived community experience and research on the extent of Indigenous rights in Canada to form the business case.FindingsThere is evidence of risk to businesses that forgo honoring Indigenous rights.Social implicationsMany businesses consider Indigenous rights and relationship building as barriers to moving forward on projects such as economic development. Through a rights-based lens, this paper outlines that honoring Indigenous rights is a business opportunity producing risk mitigation and social value.Originality/valueThe paper offers a simplified and concise business case to a complex issue and suggests an approach honoring Indigenous rights for non-Indigenous businesses.

Universal Jurisdiction as International Solidarity with Survivors of Atrocity Crimes

Abstract The primary justification for universal jurisdiction (UJ) is its use as a tool to end impunity for certain international crimes. It is also linked to deterrence, as perpetrators of such crimes can face, and have indeed faced, legal action when they travel or reside overseas. Yet, UJ is also the subject of concerns, including the risk of politically motivated prosecutions and the undermining of fair trial rights and legal process. This article contends that the case for UJ can be strengthened, taking as its starting point scholarship that foregrounds the experiences of diaspora communities, rather than the traditional grounding of UJ in abstract appeals to shared humanity. Building on the insights that this earlier work enables us to uncover, this article seeks to reinforce the normative case for UJ by reframing it as international solidarity with survivors of atrocity crimes. First, international solidarity, as a unity of interests in accountability and effective remedies among survivors, other members of the diaspora, states, civil society and international organizations, underlines the connectedness among different actors that play a role in UJ. Secondly, uncovering such connectedness adds to the justifications for UJ the need to rebuild the trust of survivors in the (inter)national criminal justice system by underlining shared interests in access to justice. This is particularly timely in the context of Afghanistan, where survivors are often left without recourse to effective remedies for past and ongoing atrocities. In building the case for UJ from a solidarity perspective, the article incorporates lessons from a project the author is involved in concerning the potential of UJ for holding members of the Taliban accountable for atrocity crimes; a collective effort commissioned by diaspora from Afghanistan. It contributes to this project by strengthening the call for survivors to form a central part of accountability efforts across the world.

RELOKASI SISTEM PANEL SURYA UNTUK KEPERLUAN POMPA AIR DI PANTAI GRIGAK GUNUNG KIDUL

The Grigak Beach community experiences difficulty obtaining clean water, especially during the dry season. The lack of duration of the solar panel system that powers the water pump in the drilled well is the cause. Therefore, an effort was made to relocate the solar panel system from the previous location to a new location, which allows the solar panel system to have a longer lifespan. The community service that was carried out successfully relocated the solar panel system from the old location to the new one. The solar panel system can have a lifespan of about two hours longer.

Please Understand My Disability: An Analysis of YouTubers' Discourse on Disability Challenges

Video-sharing platforms offer a unique avenue for people with disabilities (PWDs) to highlight their experiences, including the challenges and accessibility barriers they face. While creators with disabilities effectively use these platforms to share their life struggles and advocate for societal changes, the scope of research exploring the nature of the discourse activities related to disability challenges remains limited. Our study addresses this gap by conducting a comprehensive qualitative content analysis of 468 videos posted by YouTubers with a range of disabilities, including vision, speech, mobility, hearing, and cognitive and neural impairments. Our findings reveal a predominant discussion on stigma and lack of support. YouTube is also used to share difficulties related to communication and systemic problems. Creators with disabilities also share experiences with technologies and public and private environments, through which they discuss accessibility issues and solutions. Building on our analysis, we propose future research directions aimed at enhancing the experience and support for disability communities on video-sharing platforms.

Power and racial differences in the communication experiences of Black and White patients living with advanced cancer and their care partners: An application of co-cultural theory

ABSTRACT We investigated power imbalances in racially discordant medical interactions in the context of advanced cancer care within the United States. We applied co-cultural theory to the transcripts of 43 interviews conducted with Black and White cancer patients and their care partners. We found Black patients and care partners perceived providers as dismissing their concerns. In response, they engaged in extensive preparation, rationalization, and utilizing liaisons. White patients and care partners recognized and took advantage of their privilege and utilized liaisons. Some patients acquiesced and conferred with others in response to power enacted by oncologists. We concluded co-cultural theory is useful in explaining what occurs in racially discordant patient-provider interactions. Our findings highlight the need for provider communication and de-biasing training. Trial registration: ClinicalTrials.gov identifier: NCT03780816..

Exploring Identity in Poetry: Love, Loss, and Belonging in Sylvia Plath and Elizabeth Bishop through the Lens of Social Identity Theory

This study leverages Social Identity Theory (SIT) to explore themes of identity, belonging, and relationships in Sylvia Plath's "Mad Girl's Love Song" and Elizabeth Bishop's "One Art." Using a comparative qualitative approach, the research examines how personal and social identities influence the speakers' experiences of love and loss. Plath's poem illustrates a crisis of social identity marked by the speaker's detachment and internal conflict, reflecting struggles with isolation and idealization. In contrast, Bishop portrays loss as a communal experience, highlighting an evolving identity characterized by resilience and acceptance. The findings reveal that while both poets illustrate identity transformations shaped by relationships and loss, they utilize different coping mechanisms—Plath through fantasy and Bishop through pragmatic acceptance. This analysis underscores the intricate relationship between social identity and emotional responses, enhancing our understanding of how societal contexts impact individual identity formation.

Voice or text? The role of physician media choice on patient experience in online medical communities

AbstractOnline medical communities (OMCs) are a type of online healthcare, in which physician‐patient interaction can be comprised of a variety of media options such as pictures, text, and voice. These media formats are often used to create a personalized patient experience in AI‐driven conversational healthcare platforms. To explore how physician media usage affects patient experience, we propose a counterfactual causal inference model using AI‐driven data mining methods on 131,083 online consultation records and 7,666,111 messages sent by physicians from one of the largest OMCs in China. Our study reveals the negative impact of physician use of voice on patient experience, compared to text. Drawing upon social support theory, we identify the mechanism by which physician media usage for voice produces a negative effect. The findings indicate that the negative effect of physicians' voice‐media usage occurs mainly in low‐risk disease conditions, by weakening the role of professional and emotional support. In contrast, in high‐risk disease conditions, voice‐media usage strengthens the role of professional and emotional support in improving the patient's experience. Our study is one of the first to focus on the social support attributes of the different media formats used in OMCs. We use advanced AI text‐analysis algorithms to extract features related to social support in physician‐patient conversations, and thus contribute to the use of AI in feature extraction for research.

Exploring Collective Identity and Community Connections: An Interpersonal Analysis of Online Visitor Reviews at the Overseas Chinese Museum (2012–2023)

The Overseas Chinese Museum in Xiamen, Fujian, is a cultural historical museum in China that promotes heritage tourism and strengthens the community connection among the overseas Chinese diaspora, international and local visitors. The museum has become a platform for interpreting the immigration experience of overseas Chinese communities around the world. In this study, we examine visitors’ feedback to the Overseas Chinese Museum through a linguistic analysis of their reviews. The visitors’ reviews, 207 English-language online reviews, were collected from various travel forums between 2012 and 2023, totaling 11,584 words. We divided the data evenly into two distinct time periods, Stage I (2012–2017) and Stage II (2018–2023) and used statistical corpus log-likelihood analysis to quantify and understand if there were significant linguistic differences over time. Some of the key differences emerging from the linguistic analysis were related to conjunctions, e.g., also, while, after, and so, evaluative language and how identity was construed through language. Findings adopting an appraisal analysis suggested an increase in visitor satisfaction, possibly due to enhanced exhibits and changes in visitor expectations. The findings from analysing the reviews also showed that visitors shared similar values, developed a social bond with overseas Chinese, and engaged with this cultural historical community. The study contributes to a wider discussion on language in digital communication and cultural heritage. In addition, the visitors’ feedback and preferences could be used to improve communication and promotional strategies that ultimately increase the number of visitors to the museum.

Registered nurses’ experiences of communication with patients after the end-of-life breakpoint communication: A pilot interview study

PurposeEffective nurse-patient communication is demanding and essential when patients’ treatment changes from curative to palliative approach. We aimed to illustrate nurses’ experiences communicating with patients who have undergone end-of-life breakpoint communication. MethodSix nurses from both haematology and oncology wards at a hospital in southern Sweden were interviewed. The data were analysed using content analysis. ResultThree themes with a total of eight categories were identified: Nurses were excluded from the end-of-life breakpoint communication, which impacted the following communication and the dialogue between nurses and patients afterwards; the importance of communication, where the experience of following-up patients, supporting patients and having existential conversations was highlighted; the nurses’ strategies in the communication, included experience of using tools, the need for more information and education, and to be human. ConclusionNurses in today's healthcare system need education to provide the care and the communication that patients ask for and are obligated to receive regarding support and information. In the results, nurses suggest and relate their strategies for effective patient communication, which would also aid nurses working in areas other than palliative care. For example, they propose collaborating more with physicians to facilitate better information flow and patient contact. Moreover, reflective tutorials, including spiritual leaders to aid patients’ existential concerns, are beneficial. The need for further research in this area is crucial for the growth and development of nurse-patient communication.

“I Would Not Change [My] Sibling for the World, Maybe the World Can Change for My Sibling”: The Experiences of Adult Siblings of People With Developmental Disabilities

ABSTRACTThe sibling relationship is complex, unique and important. When one sibling has a developmental disability, siblings can be important sources of care, support, advocacy and friendship for one another. We drew on online survey data from 456 UK adult siblings of people with DD. Siblings provided written responses to a prompt about their sibling experiences (> 80,000 words). These data were analysed using qualitative content analysis and organised using the Siblings Embedded Systems Framework (SESF). The SESF helps us to consider how complex interacting mechanisms and factors surrounding siblings, families and wider systems at a local, national and international level, can influence siblings' outcomes, experiences and relationships. Overall, siblings shared a range of experiences related to their: mental health and wellbeing; personal characteristics; sibling relationships; intra‐familial experiences; caring experiences; experiences accessing support services; community experiences; and views on the discrimination and ableism that their disabled siblings experienced. Siblings reflected on the interconnected and dynamic nature of their experiences. We found the SESF to be a useful way of presenting an account of the data overall, as well as to explore the impact of societal factors on siblings' experiences. Siblings' structural, political and social contexts impacted their personal lives. Please refer to the Supporting Information section to find this article's Community and Social Impact Statement.

The Druze in the army: a (very) limited entrance ticket to Israeli (Jewish) society

This article explores the complex and often contradictory experiences of the Druze community in Israel, specifically examining how military service has shaped their identity and integration into Israeli society. While military service is typically viewed as a means of achieving social equality and inclusion, the Druze continue to face discrimination despite fulfilling their national obligations. Using semi-structured interviews, this study investigates the implications of the Druze's compulsory conscription, focusing on concepts of reciprocity, convertibility, and identity politics. Findings reveal that while military service reinforces the Israeli identity among Druze youth, it fails to provide the expected access to equal rights and full citizenship, thus perpetuating their marginalized status within an ethno-republican state.

Lymphedema Awareness and Experience in the Turner Syndrome Community.

Lymphedema commonly affects females with Turner syndrome (TS), although it may be underrecognized and untreated. The objective of this study was to better understand self-reported lymphedema prevalence, knowledge, and experience in TS. A 24-question anonymous survey was distributed to females with TS or their caregivers at a TS community event, a TS adult comprehensive care center, and an associated pediatrics clinic. Survey questions assessed lymphedema awareness, diagnosis and history, treatments and compliance, and sequelae. Data were analyzed using descriptive statistics. Forty-one surveys were returned, with 51.2% (n = 21) completed by the patient (mean age 25.8 years), 26.8% by the caregiver (n = 11), 2.5% by both the patient and the caregiver (n = 1), and 19.5% (n = 8) with unmarked respondent type. Greater than 75% (n = 31) reported having heard of lymphedema, 26.8% (n = 11) reported discussing lymphedema with a healthcare provider, and 22% (n = 9) reported receiving a diagnosis of lymphedema. The median age at the time of lymphedema diagnosis was 2 years. The most commonly affected body sites were legs/feet, followed by arms/hands and neck/face; the majority of patients experienced lymphedema at multiple body sites. Lymphedema resolution was reported by half, with a median duration of 4.25 years. Only one-third of those with lymphedema reported receiving treatment for the condition, including use of specialized massage/manual lymphatic drainage and compression garments. Identification of knowledge gaps and experience with lymphedema in TS can help with the development of targeted educational interventions. Greater awareness and understanding of this treatable condition in TS may contribute to improved health outcomes.

Enhancing nursing education through mobile health clinics: Aligning AACN core competencies with pediatric clinical experiences in rural and indigenous communities

AimA well-prepared nursing workforce is essential to meet the healthcare needs of rural, underserved, and Indigenous communities. This study examines nursing students' perceptions of a Mobile Health Training Program (MHTP) that integrates AACN core competencies, with a focus on culturally responsive care, interprofessional collaboration, and professional development. Over the past two years, the MHTP conducted preschool health screenings for children aged 0–5 at four Tribal nations in Montana. DesignSurvey followed by qualitative analysis. MethodsA total of 160 nursing undergraduate nursing students completed post-clinical surveys between September 2022 and May 2024. The survey responses were analyzed qualitatively to identify themes related to rural healthcare, culturally responsive care, exposure to diverse communities and professional growth. ResultsThe MHTP was valued by 95 % of students. Four key themes emerged: insights into rural healthcare, practicing culturally responsive care, exposure to diverse communities, and professional growth. American Indian/Alaska Native students emphasized the need for culturally reflective opportunities for all. The MHTP aligned with AACN competencies, enhancing skills in patient-centered care, cultural competence, interprofessional collaboration, and systems-based practice. ConclusionThe MHTP represents a practical model for nursing education, providing immersive, pediatric patient-focused experiences while engaging with high-priority communities. This study contributes to the limited literature on rural and Tribal clinical placements, highlighting the value of balancing simulation with direct clinical practice and preparing nursing students to address healthcare challenges in underserved areas.

Pediatric Resuscitation, Parental Presence, and Provider Perspective

Background Varying opinions and practices exist about parental presence during a pediatric resuscitation. In addition, there is a paucity of literature that investigates the perspectives of health care providers about the efficacy of parental presence in these situations. Objectives The aim of this study was to gain an understanding of the perspectives of emergency health care providers about parental presence during pediatric resuscitation. Methods This pilot study surveyed emergency health care providers about their opinions of parental presence during pediatric resuscitation. All participants were given a survey with closed- and open-ended questions. Data analysis included descriptive statistics for the demographic data and qualitative analysis for the open-ended responses. Results A total of 52 emergency services personnel completed the survey. Of the physician respondents, 78.2% (n = 18) were opposed to parental presence during pediatric resuscitation. Common reasons for opposition included the lack of education, interpersonal team communication skills or experience, and discussion concerning end-of-life issues. Discussion Utilization of formal education and simulation for parental presence during resuscitation could be helpful for increasing providers’ comfort levels with parental presence.

Exploring Indonesian coastal communities' responses to the 2019 Ambon earthquake and preparedness for future disasters

Since the seventeenth century, megathrust earthquakes and tsunamis have been recorded in Maluku Province, Indonesia. Most of Maluku's communities live on alluvial soils where tsunamis have occurred on active seismic paths, which will negatively impact them during disasters. Therefore, learning from past communities' responses and experiences is vital to decrease the risk associated with potential future disasters. However, studies about Indonesian coastal communities’ seismic responses and preparedness at the grassroots level, particularly in Maluku Province, have yet to be done. Thirty survivors of the Mw 6.5 Ambon earthquake in 2019 with over a thousand aftershocks, living in the three coastal villages on Ambon Island, were selected as respondents in the semi-structured interviews. The research results showed that the survivors had various responses to the earthquake and its aftershocks. Religious belief was a critical factor for their capability to respond to calamities, besides social support that has helped them survive. The 2019 earthquake has also enhanced their creativity, engagement, and participation. Some disaster preparedness gaps still exist, although their experiences have taught them to be more aware and prepared for future disasters. These problematic gaps are the availability of early warning systems, public education and information, risk transfer capability, protection development, humanitarian aid protocols and procedures, and health recovery. With its crucial recommendations, this study strengthens disaster governance in archipelagic countries like Indonesia and adds to the literature on how coastal communities handle multiple seismic disasters.

Understanding the patient-spouse communication experience during chemotherapy for gastric cancer: A qualitative study

Purpose This study examines how patients with gastric cancer and their spouses communicate about the illness, assessing the impact of positive or negative communication on their psychological adaptation and the intimacy of their relationship as a couple. Method Employing The Relationship Intimacy Model of Couple Adaptation to Cancer, this study used purposive sampling with the principle of maximum variation to select participants. Sixteen pairs of patients with gastric cancer and their spouse caregivers, hospitalized in the oncology department of a tertiary hospital in Jingjiang City, Jiangsu Province, from March to July 2023, were chosen for semi-structured face-to-face interviews. The recorded data were transcribed within 24 h following each interview and supplemented with field notes. Directed content analysis was employed for the qualitative content analysis. Results The interview data revealed three themes and six subthemes. Theme 1: The impact of negative patient-spouse communication, with the subthemes being (i) a decline in couples’ relationship intimacy and (ii) reduced psychological adaptation. Theme 2: The impact of positive patient-spouse communication, with the subthemes being (i) enhanced couples’ relationship intimacy and (ii) increased psychological adaptation. Theme 3: The impact of protective concealment, with the subthemes being (i) declined couples’ relationship intimacy and psychological adaptation, and (ii) increased couples’ relationship intimacy and psychological adaptation. Throughout the chemotherapy period, patients with gastric cancer and their spouses experienced both positive and negative forms of patient-spouse communication. This underscores the significance of acknowledging protective concealment within couples. Moreover, the study highlights how the dynamics of couples’ relationship intimacy and psychological adaptation are influenced by both positive and negative communication patterns surrounding the illness. Conclusions For patients with gastric cancer and their spouses, it is crucial for nurses to emphasize the importance of spousal disease communication during chemotherapy. Efforts should be made to mitigate one-sided, conflictual communication and avoidance behaviors, and to adopt appropriate communication strategies in terms of content and timing to deeply promote couple communication. Additionally, there is a need to focus on the physical and psychological stress of protective concealment in couples.

The First Nations Community Experiences With the SOAR Research Program: Improving Type 2 Diabetes Prevention and Management

ObjectivesIndigenous peoples in Canada are considered the highest risk populations for type 2 diabetes mellitus (T2DM). Quality improvement (QI) strategies may be considered effective interventions for improving T2DM health outcomes. The purpose of this study was to understand experiences associated with implementation of the SOAR QI program to improve prevention and management of T2DM. MethodsA qualitative study was conducted, and in-depth, semistructured interviews were held with QI team members and key contacts, in person and through videoconference with 2 First Nations communities. Interviews were audio-recorded and transcribed for data analysis. ResultsTen interviews were conducted and emerging themes from the data analysis were organized into 2 categories: facilitators and barriers. Four subthemes were identified. Two subthemes emerged under the category of facilitators (cultural relevance and partnership building) and 2 subthemes emerged under the category of barriers (workload burden, role ambiguity). ConclusionsThis study highlights the necessity of implementing diabetes QI strategies that foster cultural sensitivity and provide opportunities for partnership building to strengthen community relationships. We also highlight the importance of diminishing role ambiguity, and increased workload burdens, which can hinder the successful implementation of QI programs long term. Our findings can be used to improve future adaptations of SOAR and other diabetes First Nations–focussed QI strategies, to benefit Indigenous people in acquiring optimal outcomes relative to T2DM care. Findings can also inform the design, practices, and policies of such QI interventions in support of the spread and sustainability of the intervention long term.

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.

The impact of contextual understanding on neural machine translation accuracy: A case study of Indonesian cultural idioms in English translation

The translation of Indonesian idiomatic expressions into English using Neural Machine Translation (NMT) systems presents significant challenges due to the intricate nature of idiomatic language. Idioms are culturally embedded constructs conveying meanings different from their literal interpretations. This study explores the effectiveness of NMT systems in capturing and translating Indonesian idiomatic expressions into English. Using a qualitative approach, 150 diverse Indonesian idioms were evaluated through Google Translate and DeepL. Each idiom was assessed for semantic accuracy, syntactic coherence, and contextual fidelity. Qualitative analysis provided a comprehensive evaluation of translation quality. Findings reveal significant challenges for NMT systems in translating idiomatic expressions. Both Google Translate and DeepL show strengths in some areas, but also have limitations. While they generally capture literal meanings, they often miss metaphorical nuances and cultural connotations. Syntactic errors such as incorrect word order and tense inconsistencies are common, especially in complex idioms. In addition, contextual fidelity analysis shows that NMT systems struggle with contextual appropriateness and pragmatic usage, resulting in translations lacking cultural sensitivity and relevance. These challenges highlight the need for improved algorithms to better interpret and translate idiomatic language across cultural contexts. Accurate idiom translation is crucial for language learners to understand cultural nuances and idiomatic usage. Enhancing the capabilities of NMT systems requires refining algorithms, developing context-aware models, and expanding training datasets with diverse idiomatic expressions. Overcoming these challenges will advance machine translation capabilities and improve cross-cultural communication and language learning experiences.