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Background: The study aimed to investigate the efficacy of a 12-week physical activity intervention for caregivers of patients with schizophrenia. Method: Family caregivers of patients with schizophrenia were recruited and randomized into either a physical activity group (n = 31) or a control group (n = 31). The 12-week "Physical Activity Program" consisted of 10 minutes of warm-up activities as the initial segment, 20 minutes of rhythmic exercises as the activity segment, 10 minutes of cool-down exercises as the final segment, and 40 minutes of free walking. The physical activity program was designed to accommodate the ergonomics and physiological structure of the caregiver. The program consisted of 12 sessions. The Zarit Caregiver Burden Scale and the Beck Depression Inventory were used to the physical activity and control groups before the program's implementation. Results: A total of 62 caregivers were randomized to the intervention (n = 31) or control group (n = 31). Postintervention measurement was completed by 61 caregivers, and all the caregivers completed the intervention. Mean scores of Zarit Caregiver Burden Scale score and Beck Depression Inventory score in the physical activity group of caregivers at postintervention, significantly reduced at <.05 level than their mean baseline scores. Conclusions: Engagement in a 12-week physical activity intervention can improve the perceived burden of caregiving and symptoms of depression. Future research should examine with larger sample groups, carry out interventions, and apply the physical activity intervention by targeting caregivers, along with different interventions. [ABSTRACT FROM AUTHOR]

Background: Despite greater care needs, patients with limited English proficiency (LEP) are less likely to use telemedicine. Given the expansion of telemedicine since the COVID-19 pandemic, identifying ways to narrow the telemedicine care gaps experienced by people with LEP is essential. Objective: Examine the telemedicine experiences of Mandarin-speaking adults with LEP, with a focus on perceived differences between in-person care, video, and telephone telemedicine. Participants: Random sample of Kaiser Permanente Northern California (KPNC) members who completed at least one primary care telemedicine visit in August 2021, aged 40 years or older, and had electronic health record-documented need for a Mandarin interpreter. The sample was stratified by telemedicine visit type (video or phone). Approach: Semi-structured Mandarin-language telephone interviews with a bilingual and bicultural research assistant collected patient experiences with telemedicine in general and telemedicine visits assisted by interpreters. Two coders used rapid qualitative analytic techniques to capture themes. Key Results: Among 20 respondents (n = 12, 60% women) age 41–81, all had prior experience with telephone visits and 17 (85%) had experience with video visits. Patients reported three major themes: (1) communication, language skills, and how patience impacts care quality; (2) the importance of matching patient preferences on communication modality; and (3) the need for comprehensive language services throughout the continuum of healthcare delivery. Conclusion: Mandarin-speaking adults with LEP see telemedicine as a convenient and necessary service. Issues with healthcare providers' and interpreters' communication skills and impatience were common. The lack of wrap-around language-concordant care beyond the visit itself was cited as an ongoing and unaddressed care barrier. Healthcare provider and interpreter training is important, as is availability of personalized and comprehensive language services in promoting patient autonomy, alleviating the burden on patients' families, and thus ensuring equitable healthcare access. [ABSTRACT FROM AUTHOR]

Background: Ethnically Chinese adults in Canada and the United States face multiple barriers in accessing equitable, culturally respectful care at the end-of-life. Palliative care (PC) is committed to supporting patients and families in achieving goal-concordant, high-quality serious illness care. Yet, current PC delivery may be culturally misaligned. Therefore, understanding ethnically Chinese patients' use of palliative care may uncover modifiable factors to sustained inequities at the end-of-life. Objective: To compare the use and delivery of PC in the last year of life between ethnically Chinese and non-Chinese adults. Design: Population-based cohort study. Participants: All Ontario adults who died between January 1st, 2012, and October 31st, 2022, in Ontario, Canada. Exposures: Chinese ethnicity. Main Measures: Elements of physician-delivered PC, including model of care (generalist; specialist; mixed), timing and location of initiation, and type of palliative care physician at initial consultation. Key Results: The final study cohort included 527,700 non-Chinese (50.8% female, 77.9 ± 13.0 mean age, 13.0% rural residence) and 13,587 ethnically Chinese (50.8% female, 79.2 ± 13.6 mean age, 0.6% rural residence) adults. Chinese ethnicity was associated with higher likelihoods of using specialist (adjusted odds ratio [aOR] 1.53, 95%CI 1.46–1.60) and mixed (aOR 1.32, 95%CI 1.26–1.38) over generalist models of PC, compared to non-Chinese patients. Chinese ethnicity was also associated with a higher likelihood of PC initiation in the last 30 days of life (aOR 1.07, 95%CI 1.03–1.11), in the hospital setting (aOR 1.24, 95%CI 1.18–1.30), and by specialist PC physicians (aOR 1.33, 95%CI 1.28–1.38). Conclusions: Chinese ethnicity was associated with a higher likelihood of mixed and specialist models of PC delivery in the last year of life compared to adults who were non-Chinese. These observed differences may be due to later initiation of PC in hospital settings, and potential differences in unmeasured needs that suggest opportunities to initiate early, community-based PC to support ethnically Chinese patients with serious illness. [ABSTRACT FROM AUTHOR]

ABSTRACT Aims Design Methods Results Conclusion Implications for the Profession and/or Patient Care Impact Reporting Method Patient or Public To analyse how adolescents and young adults who survived childhood cancer experience their quality of life and to explore their meanings and conceptualisations of quality of life.Narrative design following Squire's method.In‐person and virtual recruitment, due to the global COVID‐19 pandemic, was carried out in Brazil between May and November 2021. Eighteen semi‐structured virtual interviews were conducted with childhood cancer survivors. These data were analysed using reflexive thematic analysis and employing a triangulation of investigators.Four subthemes were identified, encompassing participants' perceptions and meanings of quality of life. Through the reflection and synthesis of these subthemes, a central theme emerged entitled ‘New self’, capturing the profound impact of the cancer and survival experience on every aspect of the self, along with participants' sense of having gained ‘a new life’ and a ‘second chance’.The study provides a rich and nuanced understanding of quality of life for childhood cancer survivors. The results highlight that after all the changes in life due to cancer, integrating the new self becomes a central aspect of quality of life for survivors.Recognising the profound shifts in self‐perception that survivors of childhood cancer undergo, nurses should engage early in empowering patients and families, offering education, space and support to help adolescents and young adults grow throughout their journey.The richness and depth inherent in qualitative data on quality of life can inform the development of care standards and health policies for survivors, guide the allocation of strategic resources and shape the development of plans and interventions focusing on childhood cancer survivors.The COREQ checklist was used.No patient or public contribution. [ABSTRACT FROM AUTHOR]

ABSTRACT Aim Design Methods Results Conclusion Impact Implications for the Profession This study explores contextual factors affecting evidence‐based practice (EBP) adoption among Spanish nurses, examining their interaction with sociodemographic and practice variables to enhance implementation strategies.A national multicenter study employing a cross‐sectional online survey design was conducted with an intentional sample of 934 voluntary Spanish practicing nurses.Participants completed the 12‐item Barriers/facilitators dimension of the HS‐EBP instrument, along with sociodemographic, training and practice information relevant to EBP implementation. Psychometric networks have been utilised as a novel analytical approach.The HS‐EBP scores confirm validity and reliability for assessing EBP barriers and facilitators among Spanish nurses. Primary barriers include inadequate EBP discussion spaces, lack of guidance, resistance to change, patient apathy, time constraints and support gaps. Key facilitators are higher academic qualifications, EBP training, professional development participation, educational institution employment and student supervision. Focus is needed on rural nurses and those with heavy clinical duties, facing major EBP barriers.Spanish nurses encounter organisational barriers to EBP implementation, including insufficient incentives and support. Prioritising hands‐on training, professional development in teaching and research and robust programs can enhance nurses' ability to advance EBP implementation.The HS‐EBP questionnaire is reliable in measuring organisational and contextual factors affecting EBP implementation.Successful implementation of evidence‐based practice (EBP) in the Spanish healthcare system depends on developing an appropriate organisational culture and securing support from formal leaders. Additionally, fostering an understanding of the importance of patients and their families among Spanish nurses is crucial for promoting EBP adoption. [ABSTRACT FROM AUTHOR]

Background: Promoting options for aging in place (AIP) has broad appeal to policymakers and professionals providing services to persons living with dementia (PWD). However, the benefits or burdens of AIP likely vary among individuals and families. We sought to describe factors influencing decision‐making to age in place versus seek a higher level of residential care for PWD. Methods: A qualitative study was undertaken as part of a larger mixed‐methods study utilizing semi‐structured interviews with PWD, family care partners, and dementia clinicians. Interview transcripts were analyzed using qualitative content analysis with constant comparison. Sample size was determined by thematic saturation within subgroups. Results: We conducted 74 interviews among 14 PWD, 36 care partners, and 24 clinicians. Preferences for AIP were driven by (1) desire to preserve independence, (2) a sense that the "best care" is delivered by loved ones and in a familiar environment, (3) distrust and fear of care facilities, and (4) caregiver guilt. PWD and care partners frequently considered moving from home as a "last resort" and wanted to avoid planning for future care needs. Many decisions to move were reactive and triggered by patient safety events, physical dependency, or the loss of caregiver. Proactive decision‐making was facilitated by (1) prior experience witnessing the challenges of caring for a person with advanced dementia in the home; and (2) having substantial financial resources such that participants could seek major home adaptations or avoid "lower quality" institutions. Conclusions: Decisions regarding care setting for PWD frequently do not feel like a choice and are made under imperfect conditions. Programs using AIP as an outcome measure should recognize the various patient‐centered and non‐patient‐centered factors that influence such choices, and interventions should be designed to promote more informed and equitable decision‐making for care setting in dementia. [ABSTRACT FROM AUTHOR]

The article provides a detailed examination of clinical management and support for patients with Amyotrophic Lateral Sclerosis (ALS) and other neuromuscular diseases, emphasizing the need for new evaluation tools and innovative technologies. It explores various aspects such as upper airway disorders, speech and swallow changes, remote monitoring, and the impact of dietary factors on disease progression. The study also discusses the legal and governance framework for PRECISION ALS, ensuring compliance with data protection regulations and ethical standards to facilitate international collaboration and data sharing for ALS research. The text offers a comprehensive overview of research projects related to ALS and Frontotemporal Degeneration (FTD), covering topics like caregiver experiences, the impact of COVID-19 on Motor Neurone Disease (MND) care, and the challenges faced by healthcare professionals in providing care for ALS patients. [Extracted from the article]

Purpose: Craniosynostosis (CRS) is a rare congenital cranial malformation in which 1 or more cranial or facial sutures are fused in utero or rapidly fused in early infancy. The cranial sutures separate the skull bone plates and enable rapid growth of the skull in the first 2 years of life, in which growth is largely dictated by growth of the brain. CRS is a rare disease that occurs in 1 in 2100 to 1 in 2500 births and may be either nonsyndromic (also referred to as isolated) or syndromic. In syndromic CRS, other birth defects are present next to the CRS. The distinction between nonsyndromic and syndromic manifestations is made on the basis of dysmorphologic evaluation and genetic evaluation. Owing to advances in genetic diagnostics, nonsyndromic patients are increasingly recognized as syndromic patients. CRS treatment is almost entirely surgical and is sometimes paired with postoperative helmet therapy for maintenance. Corrective procedures are complex, long, and associated with the risk of numerous complications, including heavy blood loss and its sequelae. Although surgery may restore a normal appearance, even in nonsyndromic patients, patients may experience persistent deficits in intellectual ability and cognitive function. The European Commission (EC) has prioritized rare diseases in recent horizon European research programs; indeed, collections or even individual samples may be extremely valuable for research. Methods and results: Here, we present a study protocol in which the combined expertise of clinicians and researchers will be exploited to generate a biobank dedicated to CRS. The generation of the CRS biobank presented in this study will include the collection of different types of biological materials as well as advanced radiological images available to the scientific community. Conclusion: The activation of a CRS biobank will provide an opportunity to improve translational research on CRS and to share its benefits with the scientific community and patients and their families. [ABSTRACT FROM AUTHOR]

OBJECTIVES: Pediatric patients with life-limiting diagnoses frequently seek care in the pediatric emergency department (PED) during times of acute illness, or at end-of-life (EOL) . Although the population of patients with life-limiting diagnoses is heterogenous, clinician expertise in EOL communication is essential to providing family-centered care. In this study, we explored PED physician and nurse experiences with communication when eliciting EOL values, including factors specified to the PED environment, clinician perceptions of family supports and preferences, and clinicians' self-reflection of their skills and challenges in this sphere. METHODS: We performed a prospective qualitative study using semistructured interviews of PED physicians and nurses recruited from a quaternary care center. Thematic content analysis was performed on the transcribed interviews to identify codes and, ultimately, themes. RESULTS: We interviewed 17 emergency department clinicians, including 10 physicians and 7 nurses. Thematic content analysis revealed 6 salient themes. The first theme related to contextual factors of the emergency department environment. Two additional themes related to patient and family characteristics, including unique patient and family factors and clinician interpretation of parental/family needs. Lastly, we found 3 clinician-focused themes including knowledge gaps in EOL communication, communication styles and priorities in EOL conversations with families, and coping with ethical challenges. CONCLUSIONS: PED clinicians report communication-related challenges to providing optimal care for families and patients with life-limiting diagnoses. Participants self-identified gaps in communication skills in this area. Future studies should focus on clinician educational interventions on the basis of this needs assessment and include family perspectives to develop best practice. [ABSTRACT FROM AUTHOR]

Research on families with disabled children has highlighted how such families experience frustration in their encounters with health and welfare services. However, less attention has been given to how these encounters are linked to social class. This article explores whether levels of cultural capital and family resources influence communication with professionals among parents of disabled children. To this end, I draw upon a longitudinal qualitative dataset of fieldwork and interview data from families in Norway. The findings show that middle-class parents could utilize experts, keep communication smooth, and persist in trying to secure services for their children without any real sense of achievement to a higher degree than working-class parents. However, neither working-class nor middle-class parents thrived in navigating these bureaucracies. This study has clear implications for policy and professionals in acknowledging how levels of cultural capital and other family resources influence the ability to endure and navigate welfare institutions. Points of interest: To understand the situation of families with disabled children it is important to find out under which circumstances these families try to obtain public services for their children. The paper examines the significance of social class on how parents with disabled children manage welfare services for their children in Norway. The research uses interviews with parents and practitioners and observation of meetings. All parents fight for services for their children and find it frustrating. Working-class and middle-class parents differ in how they communicate with professionals and how they deal with frustration. [ABSTRACT FROM AUTHOR]

Ventriloquizing, where a speaker adopts another's voice or identity to communicate one's own thoughts, is a form of indirectness that remains understudied, particularly in Chinese medical interactions. This paper aims to contribute to the understanding of indirectness by examining instances of ventriloquizing employed by medical professionals (MPs) in China. Our analysis reveals that MPs utilize ventriloquizing by attributing speech to themselves, their interlocutors or third parties (such as patients or their family members), or sometimes unspecified individuals. Through this strategic linguistic technique, MPs mitigate complaints, advocate medical suggestions, and informs patients and families of potential risks, all while delicately navigating various interactional concerns such as doctor-patient rapport and issues of medical liability. This paper argues that MPs' employment of ventriloquizing serves to decenter themselves, enhance message authority, and maintain relational harmony, thereby achieving both relational and transactional goals in medical interactions. This practice reflects Confucianism-based medical ethics in the Chinese medical context. • Ventriloquizing is a form of indirectness in medical encounters. • Medical professionals employ ventriloquizing in interactional sequences. • Ventriloquizing helps to soften complaint tones, distance patients from undesirable options, and preempt future disputes. • Ventriloquizing facilitates achieving relational and transactional goals indirectly. • Ventriloquizing enables subtle and strategic interaction to maintain a harmonious doctor-patient relationship. [ABSTRACT FROM AUTHOR]

Background & Objective: Patient's family satisfaction is a crucial but often overlooked indicator of the quality of the intensive care unit (ICU). The goal was to assess how satisfied patients' families were with the treatment they received for terminally ill patients, where we worked with them to create a care plan. Methods: The study was conducted in ICU at Pakistan Kidney and Liver Institute and Research Center (PKLI & RC), Lahore, Pakistan which is a quaternary care center between December 1st 2022 and April 30th 2023. We used the Family Satisfaction in the Intensive Care Unit 24 (FS-ICU 24) questionnaire to interview the next of kin of patients who passed away in our ICU. Results: Of the 330 patients admitted to the intensive care unit (ICU) between December 1, 2022, and April 30, 2023, 42 patients (12.7%) passed away. Mean age was 46.8 ± 14.5 years, with 28 men (66.7%) and 14 females (33.3%). Mean length of ICU stay was 5.57 ± 5.84 day. On a scale of 1-5 (1 = very Dissatisfied; 5 = fully satisfied) the overall family's satisfaction score was 4.21 ± 0.52 with ICU consultants received a high satisfaction rating for informing families about their patients' conditions and involving them in the decision-making process. Conclusion: The study showed involving family members in the care plan and helping them prepare for death not only helps them deal better but also makes them feel satisfied with the treatment they received in the intensive care unit, It makes them appreciate that they were able to participate in the decision-making process. [ABSTRACT FROM AUTHOR]

The effectiveness of bracing with a thoraco-lumbo-sacral orthosis (TLSO) for adolescent idiopathic scoliosis (AIS) has been studied extensively, with a growing body of evidence supporting TLSO use. In this study we examine the effect of wear time and other important causal factors affecting curve progression and develop a risk model that can be applied to individual patients and is based on important casual factors. Understand the impact of TLSO wear time and other risk factors in order to guide optimal treatment. Prospective, multicenter, cohort study. Individuals with a diagnosis of AIS, age of 10 to 16 years, primary Cobb angle of 20° to 45°, Risser 0 to 2, <1 year post menarche if female, who were to be treated with a TLSO. (1) Rate of primary curve progression, (2) surgery recommendation during TLSO treatment. Wear time was monitored with thermochrons. Participants were followed until the end of growth. We examined the causal effects of wear time and baseline skeletal maturity as measured by triradiate cartilage (TRC) status, Cobb angle, and age. We then fit an outcome prediction model (logistic regression) based on important casual factors. Our final cohort consisted of 145 individuals (baseline age 12.1–13.4 years). Wear time was an important cause of response to treatment, including an interaction with TRC status. Baseline Cobb angle and age were also meaningful causes of response. The prediction model was accurate (79%) and had good specificity (81%) and moderate sensitivity (68%) and an area under the receiver operating characteristic curve (AUC) of 0.81. Additionally, we were able to independently confirm previous estimates of treatment efficacy, with an odds ratio around 2.0. Our study showed the explicit causal effects of wear time, and baseline skeletal maturity, Cobb angle and age. The risk model we developed can be used for counseling patients and their families regarding TLSO wear and expectations for outcome. [ABSTRACT FROM AUTHOR]

A metaphor conceptualizes one, typically abstract, experience in terms of another, more concrete, experience with the goal of making it easier to understand. Although combat metaphors have been well described in some health contexts, they have not been well characterized in the setting of critical illness. How do clinicians use combat metaphors when describing critically ill patients and families in the electronic health record? We included notes written about patients aged 18 years or older admitted to ICUs within a large hospital system from 2012 through 2020. We developed a lexicon of combat words and isolated note segments that contained any combat mentions. Combat mentions were defined systematically as a metaphor or not across two coders. Among combat metaphors, we used a grounded theory approach to construct a conceptual framework around their use. Across 6,404 combat-related mentions, 5,970 were defined as metaphors (Cohen κ, 0.84). The most common metaphors were "bout" (26.2% of isolated segments), "combat" (18.5%), "confront" (17.8%), and "struggle" (17.5%). We present a conceptual framework highlighting how combat metaphors can present as identity ("mom is a fighter") and process constructs ("struggling to breathe"). Identity constructs usually were framed around: (1) hope, (2) internal strength, (3) contextualization of current illness based on prior experiences, or (4) a combination thereof. Process constructs were used to describe: (1) "fighting for" (eg, working toward) a goal, (2) "fighting against" an unwanted force, or (3) experiencing internal turmoil. We provide a novel conceptual framework around the use of combat metaphors in the ICU. Further studies are needed to understand intentionality behind their use and how they impact clinician behaviors and patient and caregiver emotional responses. [ABSTRACT FROM AUTHOR]

Background: It is unknown if gastric adenocarcinoma survivors have longer, shorter, or similar survival compared to the background population. This knowledge could contribute to evidence-based monitoring strategies, healthcare recommendations, and information for patients and families. Methods: This population-based cohort study included all patients who underwent gastrectomy for gastric adenocarcinoma between 2006–2015 in Sweden and survived ≥ 5 years after surgery. They were followed up until death, postoperative year 10, or end of study period (31 December, 2020). Division of the observed by the expected survival yielded relative survival rates with 95% confidence intervals (CIs) using the life table method. The expected survival was derived from the entire Swedish population of the corresponding age, sex, and calendar year. Data came from medical records and nationwide registers. Results: The survival among all 767 gastric adenocarcinoma survivors was shorter than the expected. The reduction in relative survival increased for each follow-up year, from 97.3% (95% CI 95.4–99.1%) year 6 to 86.6% (95% CI 82.3–90.9%) year 10. The decline in relative survival was more pronounced among patients who had gastrectomy in earlier calendar years (82.9% [95% CI 77.4–88.4%] year 10 for years 2011–2015), shorter education (85.2% [95% CI 77.4–93.0%] year 10 for education ≤ 9 years), more comorbidities (78.0% [95% CI 63.9–92.0%] year 10 for Charlson comorbidity score ≥ 2), and no neoadjuvant therapy (83.2% [95% CI 77.4–89.0%] year 10). Conclusion: Gastric adenocarcinoma survivors seem to have poorer survival than the corresponding background population, particularly in certain subgroups. [ABSTRACT FROM AUTHOR]

Problematic integration theory is a theory in communication that deals with the processing of messages by humans. It is helpful to study challenges and their solutions in the health communication context to develop effective relationships, treat patients, and, ultimately, ensure the well-being of society. A scoping review was conducted. Three databases were searched following the PRISMA‐ScR statement without a time frame. Independent screening of titles, abstracts, and full texts was performed, and the studies selected based on the inclusion and exclusion criteria were assessed. The required information was then extracted from the studies and entered into Excel software. A total of 43 studies related to PI theory were identified in the databases. The results indicated that PI theory is used to interpret feelings, beliefs, challenges, concerns, and problematic dilemmas in five thematic categories: elderly care, cancer care, infertility, pregnancy, and childbirth care, illness care, and sexual care. Each of the papers also offers distinctive and valuable considerations for interventions such as communication strategies, coping mechanisms, uncertainty and certainty management, information management, education, training, support groups, and campaigns to improve decision-making and meet the challenges of health communication. [ABSTRACT FROM AUTHOR]

Background: This study evaluated the level of burden in pediatric and adolescent atopic dermatitis (AD) patients in Japan, the associated burden on caregivers/families, and whether this burden varied with age. Methods: Data were drawn from the Adelphi Pediatric AD Disease Specific Programme (DSP)™, a cross‐sectional survey of physicians and their patients conducted in Japan between July and December 2022. Physicians reported patient demographics, clinical characteristics, disease burden, and current/previous therapies. Patients and/or caregivers reported perceived disease severity and impact of AD, including the Children's Dermatology Life Quality Index (CDLQI) and Dermatitis Family Impact questionnaire (DFI). Results: Overall, 55 physicians provided data for 537 AD patients aged ≤17. Mean (SD) overall scores for CDLQI, POEM, and DFI were 9.3 (6.3), 8.3 (6.8), and 11.7 (7.2), respectively. Age was associated with higher patient and/or caregiver‐reported CDLQI scores, which increased by 0.543 points per year of age (P = 0.01). Patients with severe disease reported a more significant impact on quality of life factors compared with mild patients (P < 0.001). Age was associated with higher caregiver‐reported burden, with DFI scores increasing by 0.325 per year (P = 0.01). Physician‐reported impact on caregivers showed that age was significantly associated with increased burden on sleep, daily activities, work, and mood (P < 0.05), with disease severity associated with impact across all factors (P < 0.01). Conclusions: Both increasing age and disease severity were associated with the increased impact of AD on patients and their caregivers. Disease control/modification through appropriate therapeutic intervention at a younger age may relieve the burden of pediatric AD on patients and their families. [ABSTRACT FROM AUTHOR]

Background: We aimed to study the impact of first-degree family history on patients with endometrial cancer. Methods: We conducted a retrospective chart review from January 1990 to June 2016, comparing stage I endometrial cancer patients with and without a sporadic family history of cancers. We collected the patients' demographic information, tumor characteristics, and treatment plans. During the follow-up period, patient information on tumor recurrence and survival was collected. The chi-square test was used to assess the associations between categorical variables. The Cox proportional hazards regression model was used to estimate multivariate-adjusted hazard ratios (95% confidence interval (CI)). Results: Among the 1737 patients with stage I endometrial cancer, 709 had a positive first-degree family history of cancers and 1028 had negative family history (FH) of cancers. Patients with positive FH were more likely to be older, have stage IB disease, and receive adjuvant radiotherapy; however, the difference was not statistically significant. At 5 years follow up, patients with a positive family history had longer time to recurrence (TTR) than their negative FH counterparts. Maternal family history of cancer was the most common, followed by a sister's history of cancer, paternal history, brother's history, and offspring history of cancer. Breast, endometrial, and colon cancers are the most common cancers among first-degree relatives. Conclusion: Endometrial cancer patients with sporadic first-degree FH of cancers share similar demographics and tumor characteristics compared to their counterpart with slightly increased likelihood to be older, with stage IB disease and have a longer TTR compared to their negative counterpart. [ABSTRACT FROM AUTHOR]

Introduction: Stroke negatively impacts both patients and their families, who must face multiple changes after the onset of the disease. Family caregivers must face new problems with a possible sense of inadequacy, stress and burden. Our retrospective study aimed to assess the burden of caregivers during the rehabilitation process of patients with Stroke. Material and method: This study included patients with a diagnosis of stroke and their caregiver, who attended the Day Hospital of the IRCCS Neurolesi Center "Bonino-Pulejo", Messina, Italy, between January 2018 and October 2019, using electronic recovery system data. The final sample consisted of 30 patients and their caregivers. Results: Significant improvements were observed in patients' cognitive and mood scores, reflecting the efficacy of rehabilitation therapies. Additionally, a correlation emerged between patients' reported anxiety levels and caregivers' reported depression levels, highlighting a dynamic interaction between the emotional states of the two groups. Conclusion: The study highlights the intricate interplay between caregiver characteristics, patient outcomes, and family dynamics in the context of caregiving. Targeted interventions aimed at improving family resilience and coping mechanisms are crucial to optimizing the well-being of both caregivers and patients. [ABSTRACT FROM AUTHOR]

Seriously ill patients, such as those who experience critical illness, and their families experience a variety of poor outcomes, including financial hardship. However, little is known about the ways in which these seriously ill patients and their families experience financial hardship. To examine seriously ill patients' and families' experiences of financial hardship and perspectives on addressing these concerns during and after critical illness. We conducted a thematic analysis of semi-structured interviews with seriously ill patients who recently experienced a critical care hospitalization (n=15) and family caregivers of these patients (n=18). Our analysis revealed three themes: 1) Prioritizing Survival and Recovery; 2) Living with Uncertainty—including experiences of prolonged uncertainty, navigating bureaucratic barriers, and long-term worries; and 3) Preferences for Financial Guidance. Our results suggest patients and families prioritize survival over financial hardship initially, and feelings of uncertainty about finances persist. However, patients and family caregivers are reluctant to have their physicians address financial hardship. Our findings suggest that the acute and time sensitive nature of treatment decisions in critical care settings provides a unique context for experiences of financial hardship. Additional research is needed to better understand these experiences and design context-sensitive interventions to mitigate financial hardship and associated poor patient- and family-centered outcomes. [ABSTRACT FROM AUTHOR]

Withdrawal of life-sustaining therapies (WDLST) in young individuals with traumatic brain injury (TBI) is an overwhelming situation often made more stressful by socioeconomic factors that shape health outcomes. Identifying these factors is crucial to developing equitable and goal-concordant care for patients and families. We aimed to identify predictors of WDLST in young patients with 1-TBI. We hypothesized uninsured payment method, race, and co-morbid status are associated with WDLST. We queried the 2021 Trauma Quality Improvement Program database for patients <45 years with TBI. Patients with WDLST were compared to patients without WDLST. Multivariable logistic regression (MLR) was performed. 61,115 patients were included, of whom 2,487 (4.1%) underwent WDLST. Patients in the WDLST cohort were older (29 vs 27, P <0.001), more likely to suffer from a penetrating mechanism (29% vs 11%, P <.0001), and have uninsured (22% vs 18%) or other payment method (5% vs 3%) when compared to the non-WDLST cohort. MLR identified age (AOR:1.019, 95% CI 1.014 – 1.024, P <.0001), non-Hispanic ethnicity (AOR:1.590, 95% CI 1.373–1.841, P <.0001), penetrating mechanism (AOR:3.075, 95% CI 2.727–3.467, P <.0001), systolic blood pressure (AOR: 0.992, 95% CI 0.990–0.993, P <0.0001), advanced directive (AOR:4.987, 95% CI 2.823–8.812, P <.0001), cirrhosis (AOR:3.854, 95% CI 2.641–5.625, P <.0001), disseminated cancer (AOR:6.595, 95% CI 2.370–18.357, P =0.0003), and interfacility transfer (AOR:1.457, 95% CI 1.295–1.640, P <0.0001) as factors associated with WDLST. Black patients were less likely to undergo WDLST when compared to white patients (AOR:0.687, 95% CI 0.603–0.782, P <.0001). The decision for WDLST in young patients with severe TBI may be influenced by cultural and socioeconomic factors in addition to clinical considerations. [ABSTRACT FROM AUTHOR]

Malignant Mesothelioma (MM) has a striking impact on the somatopsychic balance of patients and their families, including physical, psychological, and interpersonal problems. The aim of this systematic literature review was to investigate what psychological interventions are offered to patients with MM and their caregivers worldwide. Methods: The review was conducted using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses. The literature search led to the identification of 12 articles. Results were categorized into five categories. 1. Individual psychological support, 2. Group psychological support, 3. Cognitive-behavioral group psychotherapy, 4. Brief psychoanalytic groups, 5. Multifamily group. Results: The interventions differed in terms of form, duration and resources used. Most of them were group-based and psychoanalytically oriented, although individual and cognitive-behavioral interventions were also described. Despite the differences, the interventions appeared to be fundamental in facilitating the processing of mental pain and anger related to the diagnosis. Conclusion: Our study has shown that there are still few psychological interventions available for MM patients and their caregivers. The somatopsychic consequences of MM in patients and caregivers should encourage institutions and healthcare professionals to develop assessment and intervention models that address the different dimensions of their suffering and promote their residual vitality. [ABSTRACT FROM AUTHOR]

Purpose: This review aimed to synthesize the literature regarding health interventions delivered to adult cancer survivors and their families during posttreatment phase. Methods: An integrative literature review was conducted that included quantitative and qualitative studies. The search was carried out in four databases using the same terms or MeSH terms and included data from January 2012 to February 2024. After quality assessment, data were extracted and synthesized. The protocol was registered in PROSPERO. Results: Among the seven studies included, two studies were randomized controlled trials, three were observational, and two utilized a qualitative approach. The studies originated from France, Australia, Canada, the UK, and the USA. In total, 704 participants were included, 294 were cancer survivors, 40 were non-cancer patients, 271 were family and caregivers, and 99 were healthcare professionals. The studies assessed survival durations after cancer treatment, ranging from 18 months to 6 years. The sparse interventions found across the studies used a multifaceted approach tailored to address various aspects of cancer survivorship and caregiver support. Conclusion: This review provides insights into the complex landscape of posttreatment support requirements for cancer survivors and their family caregivers. This finding underscores the critical necessity for additional intervention research involving comprehensive, accessible, and supportive services that address the multifaceted dimensions of survivorship for the patient and family as a unit. [ABSTRACT FROM AUTHOR]

Background: The circumstances surrounding chronic kidney disease and its impact on families can be complex and difficult to navigate, leading to these cases being labeled "challenging." Case presentation: We present the case of an adolescent with kidney failure due to unremitting systemic illness and multiple complications ultimately resulting in the family's request to forgo dialysis. Medical team members wrestled with meeting the family's needs among internal and external constraints. Conclusion: Past experiences, systemic inequities, differing perspectives, and consequential decision-making within individual belief systems can lead to friction between and among medical team members and families. As pediatric nephrologists, we must shift our focus from the "challenging" patient or family to addressing what is challenging their ability to flourishing. [ABSTRACT FROM AUTHOR]

Introduction. Good theoretical training and competent practical skills are part of the prerequisite for dealing with conflict situations. Health care students, as well as practicing professionals, are daily involved in various situations that have the potential to develop into conflicts. Awareness of the problem and preparation for dealing with conflicts would facilitate health care students and practitioners, but would also improve the quality of health care services provided and the psychoclimate of the work environment. Aim and methodology. The aim of this article is to analyse, in a comparative aspect, the perceptions of students (future health professionals) and already practising health professionals regarding the conflict situations in which they find themselves. Sociological methods (documentary and survey methods) and a wide range of statistical methods (descriptive and analytical statistics) were used to achieve this goal. Results. 310 healthcare students and 252 practicing healthcare professionals were surveyed. The attitudes of health care students and practitioners towards the occurrence of conflict situations were examined. Both students (29.3%) and practicing professionals (62.00%) reported having experienced conflict situations with patients and their families. When looking at the frequency of the conflict situations in which the respondents had been involved, it was found that more than half of the students said that they had been involved in a conflict situation only once, whereas the frequency increased for the practicing health professionals. Conclusions. The nature of health services creates a number of conditions for conflict to arise. It is necessary to implement effective conflict prevention, taking into account all the influencing factors in the organisation and delivery of health care. Additional training in conflict prevention and conflict management algorithms would prepare health care students, as well as practicing health care professionals, to prevent and resolve conflicts that have already arisen. [ABSTRACT FROM AUTHOR]

Alzheimer's disease is a progressive neurological disorder that is very common among older adults. In truth, taking care of Alzheimer's patients can be a very tedious job that requires a lot of time and effort. On the other hand, smartphone applications (apps) have become an essential part of all of our daily life fields. Almost every human activity can be related to an app from checking the weather forecasts to attending a business meeting online. As a natural result of this, many useful apps were developed to serve and help Alzheimer's patients and families around the world. Sadly, the apps launched in the Arabic area were very poor in their content and limited in their features. In this work, we present Alzheimer's care system (ACS) which is a smartphone Android app that aims to serve Alzheimer's early stages patients, their caregivers, and their doctors. ACS has an Arabic interface along with the English one to serve the patients in the Arabic talking countries who may struggle using similar apps in other languages. The app provides three account types and includes many useful features like contacting the caregivers and doctors through messages, keeping track of daily life tasks, reminding the patient of medication doses and times, and many more. Moreover, ACS has a Chatbot that provides general knowledge regarding the disease. Our app has been practically tested for one month by a group of users who were asked to fill out a 12 questions survey at the end of the test period. The survey results were very positive and encouraging in general. As future work, we plan to add other languages, develop an iOS version, and add new features to the app. [ABSTRACT FROM AUTHOR]

Background: Parents of children in pediatric intensive care units have varied communication experiences with health care professionals. Little is known about factors associated with parents' perceptions of miscommunication. Objective: To examine children's clinical and parents' demographic and psychosocial factors associated with perceptions of miscommunication in the pediatric intensive care unit. Methods: This study was a cross-sectional survey of parents of children admitted to the pediatric intensive care unit between January 1, 2018, and February 29, 2020, with a stay of greater than 24 hours. Results: Most of the 200 parent respondents were female (83.4%), White (71.4%), and non-Hispanic (87.9%); median age was 39 years (mean [SD], 40.2 [8.75] years); 17.6% were Black or African American. Among 210 children, mean (SD) age was 6.1 (6.02) years, mean (SD) stay was 4.5 (6.2) days, 38.6% were admitted because of respiratory illness, and the admission was the first for 51.0%. Of the parents, 16.5% reported miscommunication in the pediatric intensive care unit. In multivariable linear regressions, parents' stress (β = 0.286), parents' views of clinician communication (β = −0.400), parents' trust in physicians (β = −0.147), and length of stay (β = 0.122) accounted for 45% of the explained variance in parent-perceived miscommunication (R2 = 0.448, F = 41.19, P <.001). Conclusions: Parental stress and trust in physician scores were associated with perceived miscommunication. Further research is needed to understand the causes and consequences of miscommunication in order to support hospitalized children and their parents. [ABSTRACT FROM AUTHOR]

Constitutional Mismatch Repair Deficiency (CMMRD) is a rare childhood cancer predisposition syndrome, caused by biallelic pathogenic germline variants in the mismatch repair genes. Diagnosis and management of this syndrome is challenging, especially in low-resource settings. This study describes a patient diagnosed with colorectal cancer and grade 3 astrocytoma at the age of 11 and 12 respectively. Immunohistochemistry analysis showed a loss of MSH2 and MSH6 protein expression in CRC tissues of the patient. We identified by Targeted Exome Sequencing a homozygous pathogenic germline variant in exon 9 of the MSH6 gene (c.3991 C > T; p.Ala1268Glyfs*6). Genetic investigation of the family showed that the father was heterozygous for the identified pathogenic variant while the brother was wild type for this variant. Our study highlights the importance of a correct and timely diagnosis of CMMRD which can have implications for treatment. It also underlines the imperative need to enhance awareness, diagnostic standards, and surveillance that are crucial for patients and their families. [ABSTRACT FROM AUTHOR]

Polydactyly is typically observed as isolated and sporadic occurrences, although familial cases do exist, albeit with lower frequency, manifesting in various inheritance patterns. In around 30% of polydactyly cases, there exists a familial history, suggesting the probable involvement of a single gene. Given its potential for hereditary transmission, thorough investigation of the patients' parents, first‐degree relatives, grandparents, and even great‐grandparents for similar disorders becomes imperative. In our clinic, we conducted an analysis focusing on patients presenting with foot polydactyly, along with occurrences of polydactyly among their first‐ and second‐degree relatives spanning two to three generations of family history. The study encompassed three patients and their respective families, including a pair of siblings. We speculate that the inheritance type in our cases was autosomal dominant. Among our patients, one presented with central polydactyly, while the remaining patients and all familial cases displayed postaxial polydactyly. In terms of morphologic classification, one patient had a Y‐shaped metatarsal, another had a T‐shaped metatarsal, and the third patient exhibited a duplicated ray‐shaped anomaly. In our review of the literature, we haven't come across a case spanning three generations like the ones we encountered. Additionally, the presence of a transverse accessory extensor tendon between both extensor tendons in cases with T‐ and Y‐shaped metatarsals intrigued us from an anatomical perspective. Our goal is to present these rare cases of congenital familial polydactyly spanning three generations, highlighting the anatomical variations observed and aiming to contribute to the existing body of literature on the subject. [ABSTRACT FROM AUTHOR]

Introduction: Human growth hormone (hGH) therapy in children can be administered by subcutaneous injection using either a manual non-connected device, which is a portable injection pen loaded with a pre-filled cartridge, or an electronic connected device. The electronic device is connected to a platform where adherence data is recorded and available for health care professionals (HCPs) and patient support programs. Real-world data used in the clinic, includes regular monitoring of adherence data which are shared with families during patients' visits and aim to determine the root causes of poor adherence. This study aimed to identify whether there are differences in growth during the first four years of treatment depending on the device, i.e. non-connected versus connected devices. Methods: This retrospective study reports treatment of either GH deficiency or short stature secondary to birth size small for gestational age (SGA) in 174 pediatric patients attending Miguel Servet Hospital, Zaragoza, Spain. hGH treatment was administered with manual non-connected devices in 87 patients and 87 patients used connected devices. Height was followed for 4 years after start of hGH therapy. Results: In total, 57% of subjects had GHD and 43% were SGA. Height standard deviation score (HSDS) at treatment start was higher (p<0.001) in the non-connected device group compared to the connected device group. Change of HSDS in the connected device group was significantly higher in the second (+0.13), third (+0.20) and fourth (+0.23) year of treatment compared to the non-connected group after adjustment for age and HSDS at treatment start, sex, indication, dose and Tanner stages during treatment, and timing of measurements. Discussion: These results support the use of the connected device for hGH treatment of pediatric growth disorders. [ABSTRACT FROM AUTHOR]

Background: Adrenoleukodystrophy (ALD) is an X-linked peroxisomal disorder. Its cerebral form presents as a learning and behavioral disorder that, if untreated, leads to rapid neurological regression, disability, and death within 10 years of diagnosis. Therefore, the disease significantly impacts patients' quality of life, making quality of life assessment crucial for effective medical treatment and care. However, no disease-specific quality of life scale exists for ALD. Therefore, we conducted qualitative research to determine the experiences of patients and their families as a preliminary step toward developing one. Results: Four mothers of patients with cerebral ALD were interviewed. Based on classification using the qualitative content analysis method, the verbatim transcripts were grouped into four themes: support needs for patients, support needs for families, the impact of treatment, and challenges within support systems. Conclusions: Support for patients and family members is required after ALD is diagnosed. In addition to addressing symptoms, daily life support and caregiving burden should be considered. Furthermore, several challenges and opportunities exist for improving treatment and support systems. Therefore, combining appropriate supporters and support systems according to the progressive and hereditary characteristics of ALD is crucial. [ABSTRACT FROM AUTHOR]

Background: Where available, Parkinson's Nurse Specialists (PNS) provide a range of care, support, guidance, and advocacy for people with Parkinson's (PwP), and, where appropriate, their care partners (CP). Parkinson's is a complex and progressive condition. Consequently, evaluating health outcomes is not a reliable method to understand the value and impact of PNS. Previous research has identified PNS can improve the subjective well-being of PwP in the community, also that barriers to care include heavy caseloads and a lack of time. Yet little is known about the value of the role of the PNS, particularly about the impact of pharmacological management and review. This research aims to close this research gap by providing explanatory theories of the impact and value of PNS to PwP, their CP, and other professionals. Methods: A social constructivist grounded theory approach was used. Semi-structured interviews were conducted with three groups, PNS, PwP, and CP. Interviews were analysed using NVivo for coding and categorising and Word for memo-writing. Data was analysed inductively and iteratively to identify contexts, social processes, actions, and behaviours, before final emergent theories were identified. Results: 46 semi-structured interviews (PNS 18, PwP 19, CP 9) led to four data categories and 13 sub-categories that delineated PNS value. (1) Expert Counsel; provision of emotional support, education, and lifestyle guidance; CP inclusion; provision from diagnosis; and across all stages of Parkinson's. (2) Conduit of Care; signposting, referral, and connection to PwP, CP, others; PNS barriers and facilitators; (3) Team/Partnership; continuity and partnership, 'working together'; (4) Pharmacological Support, PNS prescribing; concordance; speed of treatment. Where PNS were accessible they could offer personalised support and partnership, so providing person-centred care that improves health and well-being. Conclusion: Where a PNS is accessible due to service availability and manageable caseloads, to provide person-centred care, they deliver several benefits to PwP and CP which improve health and perceived well-being. Where PNS are not available, PwP and CP often struggle to manage their Parkinson's with negative impacts on health and well-being. [ABSTRACT FROM AUTHOR]

ABSTRACT Objective Design Methods Results Conclusion Impact Patient or Public Contribution To identify the determinants of family resilience in the recovery of individuals with schizophrenia using Walsh's family resilience framework.A cross‐sectional study.In Northeast China, 403 patients diagnosed with schizophrenia were enrolled for this study, assessing family resilience, family communication, social support, illness knowledge, hope and family functioning. Regression analyses were conducted using SPSS 27.0, and mediation effects were examined using Mplus 7.0.Logistic regression showed that female gender and having a sibling as a caregiver were negatively associated with family resilience, while a higher educational level was positively associated. Mediation analysis showed that family functioning and hope levels mediated the impact of family communication, social support and disease knowledge on family resilience, confirming their crucial roles.Family functioning and hope are central in mediating the relationships between family communication, social support, illness knowledge and family resilience in families dealing with schizophrenia.The findings of this study enable psychiatric nurses and policymakers to devise intervention strategies that enhance family resilience among patients with schizophrenia, thereby facilitating their recovery and well‐being.No patient or public engagement. [ABSTRACT FROM AUTHOR]

Despite its prevalence today, the practice of purely performative resuscitation (PPR)—paradigmatically, the “slow code”—has attracted more critics in bioethics than defenders. The most common criticism of the slow code is that it's fundamentally deceptive or harmful, while the most common justification offered is that it may benefit the patient's loved ones, by symbolically honoring the patient or the care team's relationship with the family. I argue that critics and defenders of the slow code each have a point. Advocates of the slow code are right that not all PPR is wrongly deceptive or harmful to the patient or his family and that the symbolic aspect of medicine is itself morally significant. But the critics are also correct: slow codes are prima facie wrong. I argue that pursuing a slow code amounts to treating the patient as a tool for others' benefit—hence, treating him as an object—and that this instrumentalizing quality constitutes one core prima facie wrong of the practice. I also build a case for the idea that the slow code may not always be all‐things‐considered wrong, specifying certain limited conditions under which acts of PPR might ultimately be permissible. Thus, the symbolic dimension of medical treatment is indeed morally important, both in morally favorable and in morally problematic respects—namely, in its symbolic denial of the patient's humanity. [ABSTRACT FROM AUTHOR]

ABSTRACT Aim Design Methods Results Conclusions Impact Patient or Public Contribution To investigate the relationship among dyadic coping, mental health and the individual and mutual influences on stroke survivors and their spouse caregivers.A cross‐sectional descriptive study was conducted in China from November 2019 to August 2020. The STROBE checklist was used to report the present study.The analysis included 224 dyads of stroke survivors and their spouse caregivers in China. Data on stroke survivors and their spouse caregivers were collected using the Dyadic Coping Inventory (DCI), the Patient Health Questionnaire nine‐item scale (PHQ‐9) and the Generalised Anxiety Disorder seven‐item scale (GAD‐7). The dyadic analysis was conducted based on the Actor‐Partner Interdependence Model (APIM).Regarding actor effects, spouse caregivers' dyadic coping and perceived dyadic coping had a negative predictive effect on their own anxiety and depression. Stroke survivors' perceived dyadic coping had a negative effect on their own depression. Regarding partner effects, spouse caregivers' perceived dyadic coping also had a negative predictive effect on the depression of the patients. In contrast, stroke survivors' perceived dyadic coping was positively associated with spouse caregivers' anxiety and depression. These findings suggested that mental health of stroke survivors and their spouse caregivers was affected by various dyadic coping dimensions.Our research has the potential to contribute to the understanding dyadic coping and mental health of stroke survivor‐spouse caregiver dyads. The findings reveal that the coping strategies employed by stroke couples are closely related to the mental health of both partners.This study provides evidence for the significant impact of dyadic coping on the psychological well‐being of stroke survivors and their spouse caregivers. Therefore, dyadic interventions aiming at strengthening dyadic coping may have positive effects on their mental health.This study directly involved the patients and family caregivers in hospital settings. [ABSTRACT FROM AUTHOR]

Background: Regularly measuring family satisfaction with intensive care unit (ICU) experience is crucial for ensuring high‐quality care and identifying areas for improvement. This study aimed to evaluate family satisfaction with the ICU in Saudi Arabia. Methods: A cross‐sectional survey was conducted among 248 family members of patients admitted to various ICUs. The survey assessed family satisfaction via a validated questionnaire, the Critical Care Family Satisfaction Survey (CCFSS), which includes five subscales: assurance, information, comfort, proximity, and support. Demographic data were also collected. Descriptive and inferential statistics were calculated. Results: The demographic distribution revealed that a majority of the participants were female (70.97%, n = 176), with the relationships with the patients predominantly being parents (41.94%, n = 104) or offspring (33.87%, n = 84). The overall satisfaction score was 3.79 ± 1.26, with 66.13% of the participants reporting high satisfaction, 20.97% reporting intermediate satisfaction, and 12.90% reporting low satisfaction. The mean subscale scores were as follows: assurance (3.82 ± 1.2), information (3.83 ± 1.25), comfort (3.81 ± 1.27), proximity (3.72 ± 1.28), and support (3.78 ± 1.28). The highest satisfaction scores were observed for sharing in decisions, noise levels, and staff honesty, whereas the lowest scores were for visiting hours flexibility, transfer preparation, and staff responsiveness. Males reported significantly greater satisfaction (4.24 ± 1.20) than females did (3.61 ± 1.11, p = 0.007). Conclusions: This study revealed moderate to high levels of family satisfaction with the ICU, with significant differences based on sex. The findings highlight the importance of effective communication, family involvement in decision‐making, and supportive ICU policies. ICUs should regularly assess family satisfaction and use the results to guide quality improvement efforts, with a focus on areas with lower satisfaction scores. [ABSTRACT FROM AUTHOR]

ABSTRACT Aim(s) Design Methods Results Conclusion Implications for the Profession Impact Patient or Public Contribution Reporting Method To explore the impact of the COVID‐19 pandemic on nurse's well‐being, experiences of delivering healthcare within acute settings and their emotional management.Sequential mixed methods.February to July 2021 an online well‐being survey was disseminated to nurses working in acute settings within one Scottish health board. In‐depth interviews with a purposive sample of respondents were conducted. Survey data were analysed descriptively, and interview data using Framework analysis and emotional management as the theoretical framework.Well‐being was poor overall. Infection control measures impeded interactions, with loss of connection between patients, families and nurses. Emotional work was extended in caring for patients and families when visits were forbidden or restricted. Disconnect between colleagues was intensely felt. On COVID and non‐COVID wards, nurses were caring for patients with a significantly reduced workforce and often outside their clinical speciality. Nurses masked their own anxieties, fears, moral distress and exhaustion on the ward. Communal ‘backstage’ spaces, were reduced to enable more infection‐control space but reduced opportunity for collegial support. Formal psychological intervention required access after shift, and/or nurses feared they could not contain their emotions afterwards.Working during the pandemic was emotionally and physically demanding for those in COVID a.nd non‐COVID wards. Unintended consequences of infection control measures significantly extended nurses' emotional management, by caring for isolated patients and families but impeding opportunities to care for each other, compounding their emotions.There is a need to value emotional work in nursing to better support mental well‐being.We advance the nursing emotional management literature by addressing the gap of exploration in challenging conditions. The importance of emotional management on nurses' mental well‐being has been overlooked but focusing on this in the next crisis could improve nurse's well‐being.No patient or public contribution.GRAMMS. [ABSTRACT FROM AUTHOR]

Background Method Discussion In the intensive care unit (ICU), delirium in patients and long‐term mental health challenges in both patients and their family members are highly prevalent. To address these issues, patient‐ and family‐centered care has been recommended to alleviate the burdens associated with critical illness and ICU admission. We have developed the patient‐ and FAMily‐centered care in the adult ICU intervention (FAM–ICU intervention). This multi‐component intervention comprises several concrete and manageable components and operationalizing patient‐ and family‐centered care principles in clinical practice. In this protocol, we describe a study aiming to evaluate the feasibility and acceptability of the FAM–ICU intervention in the adult ICU setting, including the feasibility of collecting relevant patient‐ and family‐member outcome data.We will conduct a pre‐/post two‐group study design. We plan to recruit 30 adult ICU patients and their close family members at Herlev University Hospital in Denmark. The pre‐group (n = 15) will receive usual care and the post‐group (n = 15) will receive the FAM–ICU intervention. The FAM–ICU intervention involves interdisciplinary training of the ICU team and a systematic approach to information sharing and consultations with the patients and their family. Feasibility outcomes will include recruitment and retention rates, intervention fidelity, and the feasibility of participant outcome data collection. Acceptability will be assessed through questionnaires and interviews with clinicians, patients, and family members. Data collection is scheduled to begin in January 2025.This study will assess the feasibility and acceptability when implementing the FAM–ICU intervention and the feasibility of conducting a main trial to investigate its effectiveness on delirium in patients and the mental health of patients and family members. The data from the feasibility study will be used to guide sample size calculations, trial design, and final data collection methods for a subsequent stepped‐wedge randomized controlled trial. [ABSTRACT FROM AUTHOR]

Autoimmune adrenal insufficiency (AAI) is a rare disease. This research evaluates three patients with AAI, including autoimmune polyglandular syndrome (APS) type 2. Two patients had APS or AAI during childhood, and one had a history of endocrine autoimmune disease, indicating a possible hereditary basis of the condition. Trio-based exome sequencing and high-resolution HLA typing were employed to analyze patients and their parents. Benign or likely benign variants of the AIRE gene were identified in all participants of the study. These variants, coupled with clinical data and the results of antibody studies to type I interferons, helped to exclude APS-1. Patients with APS-2, in contrast to patient with AAI, inherited distinct variants of unknown significance in the CLEC16A gene, which is associated with autoimmune diseases, including AAI. Various risk alleles in other genes associated with autoimmunity were identified in all patients. HLA typing of class II loci revealed alleles related to APS. Nevertheless, the frequencies of the haplotypes identified are substantial in the healthy Russian population. Immunological tests can detect antibody carriers and assess the risk of autoimmune disease development. In the future, to identify genetic predictors of autoimmune endocrinopathies, it is recommended to analyze the whole genome of patients and their relatives, examining clinically relevant variants in non-coding regions. [ABSTRACT FROM AUTHOR]

Introduction: Genetic counseling and testing in psychiatry warrant attention, but research results on attitude, knowledge, personal experience and interest are limited. There are only a few studies that have compared the opinions of the general population and experts regarding genetic counseling and genetic testing in mental illness. Methods: This study aimed to investigate these gaps through a cross-sectional survey conducted in Austria, involving a sample of the web-active population, representative according to gender, age and geographical location (n=1,000, 24.5% of them had a psychiatric diagnosis), and experts (n=145, 83.4% of them psychiatrists). Two questionnaires were developed. Pearson chi-square statistics were used to compare responses, and regression analyses were employed to measure the strength of psycho-sociodemographic influences on answers. Results: The findings revealed that public considered genetic counseling to be more important than experts did (68.8% versus 54.2%; Pearson chi-square 12.183; df=1; p<0.001). The general population believed that genetic testing is useful for diagnosing mental disorders, which contrasted with experts' opinions (67.9% versus 17.2%; Pearson chi-square 137.236; df=1; p<0.001). Both groups agreed on the potential benefits of pharmacogenetic testing (79% versus 80%). A small number of individuals from the public had sought genetic counseling (8%), and only a minority of experts had specific training and experience in this field (28%). Discussion: This is the first survey study on the topic conducted in Austria, with limited international studies available. Austrian experts place less value on genetic counseling compared to their counterparts in other countries. Despite recognized importance placed on genetic counseling and testing, utilization rates remain low. The value of pharmacogenetics is predicted to increase in the future. Consequently, it is crucial for medical training programs to emphasize the significance of genetic counseling and enhance the understanding of genetic aspects related to mental illnesses to enable experts to provide adequate psychoeducation and personalized care to the extent possible to patients and their families. [ABSTRACT FROM AUTHOR]

Background: Helicopter Emergency Medical Services (HEMS) in the United Kingdom (UK) deliver enhanced care to high-acuity, critically ill and injured patients. To enable patients to meet the HEMS team who treated them, many services within the UK have developed or are in the process of developing a Patient and Family Aftercare Service (PFAS). This study aims to evaluate whether the introduction of PFAS mitigates anxiety associated with patient aftercare visits. Methods: A service evaluation of anxiety in HEMS team members before and after patient aftercare visits were conducted. The study was carried out between 1 September 2023, and 31 October 2023, and patient visits were undertaken between March 2022 and July 2023. An electronic survey was distributed to the respondents who provided informed consent for participation. The survey comprised the validated generalised anxiety disorder anxiety scale (GAD-7) and five additional contextualised statements developed through the wider PFAS. Anonymised data were collected using REDCap, a secure electronic database and was analysed in R programming. Free-text comments were reported by content analysis, placed into themes, and discussed with a narrative to complement the quantitative analysis. Results: Of the 33 recipients, 25 completed the questionnaire. Between the pre- and post-aftercare visits, a statistically significant difference was found between scores for GAD-7 (0.004, p < 0.05) and contextualised statements (0.001, p < 0.05). In addition, six broad themes were identified through content analysis. These include the emotional impact of patient interaction, coping strategies and structural changes in the aftercare system, challenges in patient and family expectations, anxieties relating to operational commitments, memory and recall of the incident, and a positive impact on personal growth. Conclusion: Anxiety related to patient aftercare visits was reduced when measured before and after the patient visits. Following this service evaluation, we can hypothesise that within pre-hospital care, PFAS plays an important structural role. Future research should focus on affirming the correct tool to measure anxiety in multi-disciplinary teams and prospectively evaluating these methods collaboratively across multiple pre-hospital services. [ABSTRACT FROM AUTHOR]

ABSTRACT Aims Methods Results Conclusion Trial Registration This review aims to explore factors influencing family resilience in families providing care for patients with cancer and to provide suggestions for future research directions.Six electronic databases were searched including Web of Science, CINAHL, EMBASE, PsycINFO, PubMed and CNKI from their inception to December 2023. The article reference lists were also manually searched. The Mixed Method Appraisal Tool was used to assess the included studies in this review. The 27‐item checklist Preferred Reporting Items for Systematic Reviews and Meta‐Analyses (PRISMA) statement was followed to report this review.Twenty‐one studies from six online databases reported that either individual or family factors have effects on family resilience and were described into five clusters on the basis of the Walsh model of family resilience, including demographic and clinical factors, personal strengths and resources, family stressors, family resilient coping processes and family resilient adaptation outcomes.Family resilience in cancer families plays a pivotal role in coping with family stressors and facilitating positive outcomes through domains of coping. Future researches need to explore factors related to family resilience from dyadic perspectives and to establish multidisciplinary intervention strategies for developing levels of family resilience in cancer families.PROSPERO: CRD42024535349 [ABSTRACT FROM AUTHOR]

Family-centered care is vital in neonatal intensive care units (NICUs), where family involvement is linked with improved patient outcomes. However, collaborating with patient families presents unique challenges for medical teams. The purpose of this research is to identify behaviors NICU teams use to promote family-centered teamwork. This study used qualitative data from observations of 320 patient rounding events. Results were analyzed using content analysis. Observed behaviors were categorized into five themes, which captured medical team members’ efforts to include patient families in teamwork: inviting families to participate in teamwork, developing a shared mental model of goals and plans, empowering family caregiving in the hospital and preparing family for discharge, coordinating communication between family and medical team, and developing positive relationships with patient families. The findings from this study emphasize that providers can include patient families in the NICU team, despite challenges associated with doing so. [ABSTRACT FROM AUTHOR]

Background/Objectives: Empathy and emotional regulation (susceptibility and resistance) play an important role in a nurse's well-being and the provision of high-quality care. This phenomenon has not yet been studied in the context of nurses working in neuroscience. This study aimed to explore the perceptions related to empathy among nurses working in neuroscience contexts. Methods: Employing a mixed-methods approach, we conducted an online quantitative survey with 211 nurses working in various neuroscience settings using the Balanced Emotional Empathy Scale (BEES) and 15 online semistructured qualitative interviews to delve deeper into empathetic experiences. The mean and measures of dispersion, such as standard deviation, were used to analyze the quantitative data. Thematic analysis investigated qualitative data, and data triangulation was performed. Results: The quantitative findings revealed no significant differences in empathy or emotional regulation across the different neuroscience settings but highlighted an increase in susceptibility related to young age (under 29) and years of service (first 5 years). The interviews brought to light the challenges nurses face in highly emotional situations and the strategies they employ to manage empathy and maintain professional detachment, such as self-care strategies, awareness development, and team support. One hindering factor is managers. Conclusions: The findings of this study underscore the essential role of empathetic capability in nursing care in neuroscience. The experience of younger nurses and the first 5 years of employment are elements to be considered by managers for burnout risk. Nurses demonstrate susceptibility and resistance and maintain a balance in dealing with high-emotional-stress situations. The implications of these findings are significant and should guide future research and practice in the field of neuroscience nursing. [ABSTRACT FROM AUTHOR]

Background: Family members are often affected by the long-term consequences of traumatic brain injury, but are rarely involved in rehabilitation programs in the chronic phase. We thus do not know what family members´ main concerns are in the chronic phase, what factors are associated with perceived caregiver burden, and whether family members´ health and functioning improves due to rehabilitation efforts received by the patients. This study explored family-members' functioning, predictors of caregiver burden and effect for family members of a goal-oriented intervention in the chronic phase of traumatic brain injury. Methods: Family members self-reported data measuring their caregiver burden, depression, general health, loneliness, and their evaluation of patient competency in everyday life, patient awareness levels, main problem areas (target outcomes) for the patient related to the brain injury, and demographic data were collected. Regression models were used to explore predictors of caregiver burden, and mixed models analysis was used to explore treatment effects. Results: In total, 73 family members were included, 39 in the intervention group and 34 in the control group. Moderate to high caregiver burden was reported by 40% of family members, and 16% experienced clinical levels of depression. Family member loneliness and their evaluation of the patient's level of functional competency explained 57% of the variability in caregiver burden. There were no treatment-related changes in caregiver burden, family member depression or general health. At T2 there was however a significant reduction in how family members rated severity of target outcomes that the family members had nominated at baseline (-0.38, 95% CI, -0.75 to -0.02, p = 0.04), but not for the target outcomes the patients had nominated. Conclusions: A significant proportion of family members to patients in the chronic phase of TBI continue to experience challenging caregiver burden and emotional symptoms. Both family member-related and patient factors contribute to caregiver burden. Interventions targeting patient complaints do not automatically alleviate family members´ burden. It is important to address social support for family members early after injury, and there is a need for more interventions specifically targeting family members´ needs. Trial registration: The trial was registered at ClinicalTrials.gov, NCT03545594 on the 4th of June 2018. [ABSTRACT FROM AUTHOR]

AbstractObjectivesMethodResultsConclusionThe present study examined the existence of posttraumatic growth (PTG) and its association with cognitive processing, resilience, and family functioning in family caregivers of patients with Alzheimer’s disease (AD).Family caregivers (N = 114) were surveyed using measures of cognitive processing, resilience, family functioning, and PTG. Data were analyzed using descriptive statistics, Pearson correlations, and multiple regression analyses.The average PTG score in the sample was 48.6 (SD = 18.7; range 14–105). Race, education level, severity of the patient’s AD, cognitive processing, resilience, and family functioning explained 25.8% of the variance in PTG (F [9, 95] = 5.025, p < 0.001). Race was significantly correlated with PTG; specifically, non-White caregivers reported higher PTG than White caregivers (p < 0.05). When controlling for race and education level, mild AD, intrusive rumination, and family satisfaction were significant predictors of PTG (p < 0.05). However, deliberate rumination, resilience, and family communication were not significant predictors PTG (p > 0.05).These findings provide insight into factors that may influence the development of PTG in family caregivers of patients with AD. Results may inform intervention strategies to mitigate the negative consequences of caregiving and promote PTG in this caregiver population. [ABSTRACT FROM AUTHOR]

Background Falls in hospital remain a common and costly patient safety issue internationally. There is evidence that falls in hospitals can be prevented by multifactorial programs and by education for patients and staff, but these are often not routinely or effectively implemented in practice. Perspectives of multiple key stakeholder groups could inform implementation of fall prevention strategies. Methods Clinicians of different disciplines, patients and their families were recruited from wards at two acute public hospitals. Semi-structured interviews and focus groups were conducted to gain a broad understanding of participants' perspectives about implementing fall prevention programs. Data were analysed using an inductive thematic approach. Results Data from 50 participants revealed three key themes across the stakeholder groups shaping implementation of acute hospital fall prevention programs: (i) 'Fall prevention is a priority, but whose?' where participants agreed falls in hospital should be addressed but did not necessarily see themselves as responsible for this; (ii) 'Disempowered stakeholders' where participants expressed feeling frustrated and powerless with fall prevention in acute hospital settings; and (iii) 'Shared responsibility may be a solution' where participants were optimistic about the positive impact of collective action on effectively implementing fall prevention strategies. Conclusion Key stakeholder groups agree that hospital fall prevention is a priority, however, challenges related to role perception, competing priorities, workforce pressure and disempowerment mean fall prevention may often be neglected in practice. Improving shared responsibility for fall prevention implementation across disciplines, organisational levels and patients, family and staff may help overcome this. [ABSTRACT FROM AUTHOR]

Home visiting programs are an evidence-based approach to reducing adversity exposure and promoting well-being in children experiencing high-risk factors. Despite decades of research demonstrating the benefits of these programs, barriers continue to impact enrollment, engagement, and retention over time. The present qualitative study explored home visiting providers' perceptions of the behaviors they use to promote enrollment and engagement and reduced attrition for families. Twenty-one providers of three home visiting models (Nurse-Family Partnership, Parents as Teachers, and SafeCare) completed in-depth, semi-structured interviews to probe into provider behaviors that might improve program outcomes. Qualitative data analysis of interviews was conducted using NVivo software with a template approach used to identify broad themes. Findings indicated differences in provider behaviors across enrollment (provider approach and outreach), engagement (provider support and communication), and retention (provider sharing resources and setting goals). Across all three, providers emphasized the importance of building rapport. Implications suggest that workforce structure and training include behavioral strategies to improve enrollment, engagement, and retention in programs to promote program and familial success. Highlights: Provider approach and outreach are related to the promotion of enrollment in home visiting programs focused on families experiencing high-risk factors. Provider support and communication promote the engagement of families in home visiting programs. Sharing resources and setting goals with families were strategies reported by providers to promote the retention of families in home visiting programs. [ABSTRACT FROM AUTHOR]

Drug-resistant epilepsy is frequent, persistent, and brings a heavy economic burden to patients and their families. Traditional epilepsy detection methods ignore the causal relationship of seizures and focus on a single time or spatial dimension, and the effect varies greatly in different patients. Therefore, it is necessary to research accurate automatic detection technology of epilepsy in different patients. We propose a causal-spatio-temporal graph attention network (CSTGAT), which uses transfer entropy (TE) to construct a causal graph between multiple channels, combining graph attention network (GAT) and bi-directional long short-term memory (BiLSTM) to capture temporal dynamic correlation and spatial topological structure information. The accuracy, specificity, and sensitivity of the SWEZ dataset were 97.24%, 97.92%, and 98.11%. The accuracy of the private dataset reached 98.55%. The effectiveness of each module was proven through ablation experiments and the impact of different network construction methods was compared. The experimental results indicate that the causal relationship network constructed by TE could accurately capture the information flow of epileptic seizures, and GAT and BiLSTM could capture spatiotemporal dynamic correlations. This model accurately captures causal relationships and spatiotemporal correlations on two datasets, and it overcomes the variability of epileptic seizures in different patients, which may contribute to clinical surgical planning. [ABSTRACT FROM AUTHOR]