Community Experience Research Articles

"No doctor ever asked me…so I thought it wasn't a valid concern":endometriosis patients' perspectives of barriers and facilitators to sexual health communication in general practice.

Sexual health communication between general practitioners (GPs) and individuals with chronic diseases is well documented as an important component of sexual well-being. However, a notable gap exists in understanding factors that contribute to sexual health communication in the endometriosis context. Endometriosis-related research has focused on the assessment of sexual functioning and its role in influencing health-related quality of life, with a limited understanding of the management of sexual well-being in primary healthcare settings. To explore how individuals with endometriosis perceive their experiences of sexual health communication with GPs to understand the barriers and facilitators of this communication in general practice. This study formed part of a larger online quantitative survey measuring psychological and sexual well-being in individuals with endometriosis. In total 141 participants provided responses via open-ended unlimited free-text questions focused on their experiences of sexual health communication with GPs, including their perspectives on barriers and facilitators. Four overarching themes regarding barriers to sexual health communication were identified through thematic template analysis: (1) systemic factors; (2) practitioner factors; (3) patient factors; and (4) interpersonal factors. Facilitators mirrored strategies to address these barriers. Additionally, participants offered recommendations for developing resources to improve sexual health communication. Despite patients' interest, sexual health concerns in endometriosis are commonly overlooked in general practice due to various barriers, which individuals suggest could be addressed through comprehensive GP education and practical aids including communication tools. Although the sample is large for a qualitative study, the potential selection bias-stemming from participants' high levels of sexual dysfunction and motivation to discuss sexual health with a GP-may limit the diversity of perspectives. GP perspectives were not evaluated, precluding any assessment of the accuracy of individuals' perceptions of practitioner factors. Individuals with endometriosis encounter various systematic, practitioner, personal, and interpersonal factors that hinder or facilitate sexual health communication in general practice. Future research should prioritize strategies to improve sexual health communication for both GPs and patients.

The Acculturation of Pakistanis in Singapore

ABSTRACT This article explores the process of acculturation for Pakistanis in Singapore and their later generation descendants from the country’s colonial period to the present day, focusing on the complexities brought about by migration, colonialism, and nationhood. It analyses how the historical context, namely Singapore’s unique position as a multicultural British colony situated in the Malay peninsula has shaped the experiences of this diaspora community in a variety of ways. Using qualitative research methods and employing cross-cultural psychologist John Berry’s acculturation strategies and multicultural adaptation hypothesis, the article argues that the acculturation process has been facilitated by the sense of cultural and socio-economic security among Pakistani immigrants and their families, amidst evolving political developments and top-down policies during Singapore’s transition from a British colony to an independent nation. The findings of this study will contribute to our understanding of diaspora experiences in multicultural societies and provide insights into the complex dynamics of acculturation in a rapidly changing social context.

Abstract 4139192: Remote monitoring platform improves communication and clinical decision making for pediatric interstage healthcare team members

Background: Asynchronous remote patient monitoring (RPM) is increasingly common in healthcare models for infants with congenital heart disease (CHD). Using a downloadable mobile application with a software platform like CHAMP App ® allows parents to proactively engage in data entry, providing pediatric healthcare teams (HCT) timely information without relying solely on parent messaging or calls. Research Question: How does the use of RPM impact family communication and clinical decision-making experiences for HCTs? Goals: To identify the HCT’s experience through a secondary review of the CHAMP Cardiac Repository, using parent-entered interstage data from home for infants with CHD. Methods: This retrospective multi-institution cohort (Table 1) spanned from 5/2019-8/2023, collecting HCTs feedback via Likert responses (Table 2) about experiences with infant monitoring endpoint, which were analyzed in SPSS. Results: Response rates of 75.8% (493/650) were achieved across 10 pediatric cardiac care centers. HCTs reported improved communication (4.5 + .77) and clinical decision-making with video reviews (4.47 + .79). Parents' data engagement averaged 268 + 195.3 total points (oxygen saturation, weights, and/or videos) per infant. Higher engagement correlated with better HCT communication (p <.001) and decision-making (p <.0001), both with small effect sizes. Improved clinical decision-making was noted in families who used study-provided iPads for video recordings (mean score 4.63 ± 0.84) compared to those using personal devices (mean score 4.42 ± 0.734, p = .03), with 69.2% using personal devices. Conclusions: In this modern cohort, families engaged well with data entry through a remote monitoring platform, and HCTs reported significant improvements in communication with families for their child’s data from home and clinical decision-making after reviewing videos. Future research should explore barriers to mobile data engagement and assess HCT preferences for video review.

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

Delivering 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. We 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. 31 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. The 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

Enhancing Nursing Education through Mobile Health Clinics: Aligning AACN Core Competencies with Pediatric Clinical Experiences in Rural and Indigenous Communities

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.

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 Nation Community Experiences with the SOAR Research Program: Improving Type 2 Diabetes Prevention and Management

ObjectiveIndigenous peoples in Canada are considered the highest-risk populations for type 2 diabetes mellitus (T2DM). Quality improvement (QI) strategies may be considered effective interventions to improving T2DM health outcomes. The purpose of this study was to understand experiences associated with the implementation of the SOAR QI program to improve prevention and management of T2DM. MethodA qualitative study was conducted, and in-depth, semi-structured interviews were held with QI team members and key contacts, in person and through videoconference with two First Nations communities. Interviews were audio recorded and transcribed for data analysis. Results10 interviews were conducted and emerging themes from the data analysis were organized into two categories, namely facilitators and barriers. Four subthemes were identified. Two subthemes emerged under the category of facilitators (cultural relevance, and partnership building). Two subthemes emerged under the category of barriers, (workload burden, role ambiguity). DiscussionThis study highlighted the necessity of implementing diabetes QI strategies that foster cultural sensitivity and provide opportunities for partnership building, to strengthen community relationships. The study also highlighted the importance of diminishing role ambiguity, and increased workload burdens, which can hinder the successful implementation of QI programs long-term. ConclusionThe findings of this study can be utilized to improve future adaptations of SOAR and other diabetes First Nations focused 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.