Experiences of Ambulatory Patients With Huntington's Disease With Case Management: A Qualitative Study.

PURPOSE/OBJECTIVES: Huntington's disease (HD) requires high-quality care to reduce disruption of the patient system, prevent crisis situations, and prevent early admission in a nursing home. In the Netherlands, case management has been available for the last to 9 years for people with HD. However, there is a notable gap in understanding experiences and beliefs of HD patients regarding case managers' care, guidance, and support for quality of life. To improve the international quality of care for people with HD, insight in experiences of ambulatory HD patients with the care, guidance, and support received from a case manager HD (CMHD) is crucial. PRIMARY PRACTICE SETTING: Ambulatory care. FINDINGS/CONCLUSIONS: Ambulatory patients with HD highly appreciate and value the role and support of the CMHD. This was reflected in four themes: (1) the CMHD as a person, with commitment, sympathy, and reliability as central concepts; (2) the CMHD as a professional, with the key roles of coordinator, point of contact, expert, and supporter; (3) impact of the CMHD on quality of life, with support of coping with decline and monitoring the home situation as important subthemes; and (4) support of the CMHD for family members, with providing help and giving attention as subthemes. This insight into patients' experiences of the CMHD's role adds value to the improvement of the international quality of care for people with HD. IMPLICATIONS FOR CASE MANAGEMENT PRACTICE: Commitment, expertise, support for both family members and patients, and bond of trust from the CMHD are experienced as very valuable. These qualitative findings from a patient's perspective add significantly to the body of knowledge on CMHD's role and practices as "spider at the center of the web."

Maltreatment in Daycare Settings: A Review of Empirical Studies in the Field.

Daycare maltreatment refers to abusive and/or neglectful acts perpetrated by teachers, directors, non-professionals or volunteers, family members of staff, and peers in a daycare setting. Despite growing evidence of its occurrence, the prevalence and consequences of daycare maltreatment for the child, the parent(s), and their dyad are largely unknown. This qualitative systematic literature review was conducted to synthesize the existing literature referring to daycare maltreatment, using Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. In order to be included in the analysis, the manuscripts needed to report empirical findings regarding maltreatment in daycare settings, be written in English, be published in a peer-reviewed journal or a dissertation, and be accessible by our research team. In all, 25 manuscripts met the above criteria and were included in the review. Our results indicate that reports of daycare maltreatment are characterized by early age of abused children, inferring mainly to sexual, physical, and emotional abuse. The majority of these manuscripts reported caregivers' and teachers' abuse, while peer victimization was reported much less. In addition, the findings demonstrated a higher representation of female perpetrators compared to abuse in other scenarios. Although some indications of long-term implications are reported in the manuscripts, a well-validated measure for assessment of daycare maltreatment seems to be lacking. These findings contribute to a more nuanced understanding of the complex experience and ramifications of daycare maltreatment, providing insight into its multi-faceted implications.

Rapport building with adolescents to enhance reporting and disclosure.

Adolescents comprise a vulnerable population that is exposed to crime and also may be reluctant to disclose full details of their experiences. Little research has addressed effective ways of increasing their willingness to disclose and provide complete reports. Strategies that improve honesty and report completeness in other age groups have not been evaluated to determine whether they are similarly effective at increasing adolescents' reporting. In the current study, we tested whether rapport building techniques, modified from those commonly used with children and adults to address reasons why adolescents are likely reluctant, enhance the amount of detail adolescents provide about prior experiences. The participants, 14- to 19-year-olds (N = 125), completed an online questionnaire regarding significant events (e.g., big argument with family member) they experienced during the last 12 months. After a delay, they completed a remote interview asking them to recount details of one of the events. The interview began with either standard rapport building composed of largely yes/no questions about the adolescents' background or one of two expanded rapport building phases: open-ended (questions about the adolescents' backgrounds that required narrative answers) or enhanced (open-ended questions paired with the interviewer also sharing personal information). Although only adolescents in the standard condition showed age-related increases in information disclosed, overall adolescents in the enhanced condition provided significantly longer and more detailed narratives than adolescents in the other conditions. This effect was largest for the youngest adolescents, suggesting that mutual self-disclosure may be especially beneficial for eliciting honest complete reports from adolescents about salient prior experiences.

Gravedad de accidentes cerebrovasculares para determinar síntomas osteomusculares en cuidadores familiares / Stroke severity to determine musculoskeletal symptoms in family caregivers / Gravidade do AVC e determinação dos sintomas musculoesqueléticos dos cuidadores familiares

Objetivo: el objetivo de este estudio es examinar la relación entre los problemas osteomusculares sufridos por cuidadores familiares que tienen a su cargo velar por pacientes que han sufrido un accidente cerebrovascular y los niveles de salud física y discapacidad. Método: los sujetos incluidos en el estudio eran pacientes y cuidadores familiares atendidos en la clínica de servicios ambulatorios de Fisioterapia y Rehabilitación del Hospital Universitario y de Investigación Kanuni Sultan Suleyman por diagnósticos de ACV entre el 30 de mayo de 2019 y el 30 de mayo de 2021. Los cuidadores fueron evaluados mediante el Extended Nordic Musculoskeletal Questionnaire. Se emplearon escalas validadas para evaluar los niveles de salud física y discapacidad de los sobrevivientes de accidentes cerebrovasculares. Resultados: los participantes de este estudio fueron 104 sobrevivientes de accidentes cerebrovasculares y 104 cuidadores que cumplieron con nuestros criterios de inclusión. Las quejas relacionadas con la región lumbar durante el último mes se asociaron con las puntuaciones obtenidas por los pacientes en el Functional Ambulation Score (FAS), la Functional Independence Measure (FIM) y la Stroke Impact Scale (SIS), además de las puntuaciones Brunnstrom. El dolor de cuello fue la segunda queja osteomuscular, aunque no se asoció estadísticamente con factores relacionados con los pacientes. Los problemas en las extremidades superiores se asociaron con las puntuaciones obtenidas en los instrumentos FAS, FIM, SIS, Brunnstrom y Modified Ashworth Scale. Conclusión: de acuerdo con nuestros hallazgos, la región lumbar es la parte del cuerpo más afectada por quejas osteomusculares en cuidadores familiares de sobrevivientes de accidentes cerebrovasculares, demostrando una estrecha relación con los niveles de capacidad funcional y discapacidad de los pacientes. Número de registro de ensayos clínicos: NCT04901637

Objective: the objective of this study is to examine the relationship between the musculoskeletal problems experienced by the family members who care for stroke patients, physical health and disability levels. Method: the subjects included in the study were patients and family caregivers admitted to the Kanuni Sultan Suleyman Training and Research Hospital Physical Medicine and Rehabilitation outpatient clinic with a stroke diagnosis between May 30 th, 2019, and May 30 th, 2021. The caregivers were assessed using the Extended Nordic Musculoskeletal Questionnaire. Validated scales were employed to evaluate stroke patients' physical health and disability level. Results: a total of 104 stroke patients and 104 caregivers who met our inclusion criteria took part in this study. Low back complaints in the last month were associated with the patients' Functional Ambulation Score (FAS), Functional Independence Measure (FIM), Stroke Impact Scale (SIS) and Brunnstrom scores. Neck pain was the second musculoskeletal complaint, but was not statistically associated with patient-related factors. Upper limb problems were associated with FAS, FIM, SIS, Brunnstrom and the Modified Ashworth Scale scores. Conclusion: according to our findings, the low back is the body area most affected by musculoskeletal complaints in family caregivers of stroke patients, closely related to the patients' functional capacity and disability levels. Clinical trials number: NCT04901637

Objetivo: o objetivo deste estudo é examinar a relação entre os problemas musculoesqueléticos vivenciados pelos familiares que cuidam de pacientes com AVC, a saúde física e o nível de deficiência do paciente. Método: foram incluídos no estudo pacientes e familiares cuidadores admitidos no hospital Kanuni Sultan Suleyman com diagnóstico de AVC entre 30 de maio de 2019 e 30 de maio de 2021. Os cuidadores foram avaliados utilizando o questionário Extended Nordic Musculoskeletal Questionnaire. Escalas validadas foram usadas para avaliar a saúde física e o grau de incapacidade dos pacientes com AVC. Resultados: um total de 104 pacientes com AVC e 104 cuidadores atenderam aos critérios de inclusão do estudo. As queixas lombares no último mês foram associadas aos escores do Functional Ambulation Score (FAS), Functional Independence Measure (FIM), Stroke Impact Scale (SIS) e teste de Brunnstrom do paciente. A dor no pescoço foi a segunda queixa musculoesquelética, mas não foi estatisticamente associada a fatores relacionados ao paciente. Os problemas nas extremidades superiores foram associados aos escores FAS, FIM, SIS, Brunnstrom e à Modified Ashworth Scale. Conclusão: e acordo com os nossos achados, a região lombar é a área do corpo mais afetada por queixas musculoesqueléticas nos cuidadores familiares de pacientes com AVC, que estão intimamente relacionadas ao nível de capacidade funcional e ao grau de incapacidade dos pacientes. Número do estudo clínico: NCT04901637.

Acompañamiento a los menores durante los procedimientos asistenciales / Accompaniment of minors during health care procedures

En la práctica clínica no es infrecuente observar situaciones en las cuales se invita a los progenitores y la familia a dejar a los menores en soledad junto al equipo asistencial en estancias repletas de tecnología durante la realización de procedimientos, dando lugar en ocasiones a conflictos, pero sobre todo con consecuencias emocionales en los niños o adolescentes.Se ha realizado una revisión narrativa de la literatura mediante búsqueda bibliográfica en la biblioteca virtual del sistema sanitario público de Andalucía, siendo los criterios de inclusión utilizados, estudios que conciernen a las experiencias de profesionales sanitarios y familiares sobre el acompañamiento de la población pediátrica en los procedimientos asistenciales. El resultado de la búsqueda se limitó a trabajos en humanos en español e inglés.Esta revisión pone de manifiesto la necesidad de humanizar la asistencia sanitaria para mejorar la calidad de la atención. Se justifica la necesidad de acompañamiento de los menores, a través de trabajos que han analizado los factores que intervienen en la permanencia de estas conductas y actitudes tanto por profesionales como padres. Se recomienda la necesidad de políticas institucionales y figuras mediadoras que recojan las declaraciones de algunas sociedades nacionales e internacionales teniendo en cuenta aspectos legales, pero sobre todo los valores en juego desde una ética del cuidado y búsqueda del interés superior del menor.(AU)

In clinical practice, it is not rare to encounter situations in which parents and families are asked to leave the child alone with the health care team in rooms full of devices throughout the performance of procedures, which at times may give rise not only to conflicts but, more importantly, emotional sequelae in children or adolescents.We conducted a narrative review of the literature by searching the digital library of the public health care system of Andalusia for articles concerning the experiences of health care professionals and families with the accompaniment of paediatric patients during health care procedures. We restricted the search to studies published in Spanish or English and conducted in humans.The review evinced the need to humanise care in order to improve care quality. The need to accompany minors is supported by the evidence from works that have analysed the factors involved in the persistence of these behaviours and attitudes in both professionals and parents. We consider it necessary to develop institutional policies and appoint mediators to compile the statements of different national and international societies, taking into account legal aspects but, above all, the pertinent values from a health care ethics perspective, and in pursuit of the best interests of the child.(AU)

Migraines and Family Life: Adaptation and Validation of the Portuguese Version of the IMPAC Scale / Las migrañas y la vida familiar: adaptación y validación de la versión portuguesa de la escala IMPAC

Migraine is a prevalent disorder imposing a great, pervasive burden on the bearer’s life. However, research is lacking on the individual and family impact of migraines. This study aims to adapt and validate a Portuguese version of the Impact of Migraine on Partners and Adolescent Children (IMPAC) scale, analyzing its psychometric properties. Four hundred eighty six individuals with migraines answered an online questionnaire, also containing a health-related quality of life measure – SF-12. The IMPAC-P presented good psychometric properties and fit of the theoretical model with three underlying factors – Activity Limitations, Partner Interaction, and Children Interaction. The impact of migraines was higher in women, single or widowed individuals, and those aged 21 to 40, exhibiting a significant and negative correlation with SF-12. The IMPAC-P is a brief, valid, reliable, and sensitive tool for assessing the impact of migraines on the bearer’s life and family in both clinical and research contexts. (AU)

La migraña es un trastorno prevalente que impone una carga grande y generalizada en la vida del que la sufre. No obstante, falta investigación acerca de la repercusión individual y familiar de la misma. El estudio adapta y valida la versión portuguesa de la escala sobre Repercusión de la Migraña en la Pareja e Hijos Adolescentes (IMPAC según sus siglas en inglés), analizando sus propiedades psicométricas. Una muestra de 456 sujetos que padecían migrañas contestó al cuestionario online, que incluía igualmente una medida de calidad de vida relativa a la salud (la SF-12). La escala presenta buenas propiedades psicométricas y un buen ajuste al modelo teórico, con tres factores subyacentes (limitaciones de la actividad, interacción de pareja e interacción entre los hijos). El impacto de las migrañas era superior en las mujeres y personas solteras o viudas así como en las personas de entre 21 y 40 años de edad, habiendo una correlación negativa significativa con la SF-12. Se trata de una herramienta breve, válida, fiable y sensible para evaluar el efecto de las migrañas en la vida de quien las sufre y de la familia, tanto en contextos clínicos como de investigación. (AU)

Maternal, newborn, and children under-five health surveillance system: a scoping review protocol.

BACKGROUND: Public health surveillance is crucial in monitoring the progress of maternal, newborn, and children under-five health outcomes (MNCH). Consequently, mapping the existing surveillance system from countries with different income and development levels is needed to learn and compare the effectiveness of surveillance. However, the current COVID-19 pandemic has disrupted the health system, including the healthcare services for pregnant women, neonates, infants, and children under five, as well as the recording, reporting, and surveillance system. The need to adapt to the new normal during the pandemic has stimulated innovation while incorporating new COVID-19-related indicators into the existing public health system. Therefore, this review aims to describe the existing implementation and the COVID-19 pandemic's influence on the MNCH surveillance system. METHODS: We will search published literature (from MEDLINE, Embase, and Portal Garuda), manually search from all reference lists of included studies, and conduct a targeted search of relevant gray literature. This review will include studies of surveillance systems or describe COVID-19 surveillance or routine reports involving MNCH (morbidity and mortality). The studies included will be in English or Indonesian language, observational study designs, and published or documented from 2010 to 2023. Two investigators will independently screen the title and abstract, including each full article to determine the eligibility of studies. The data will be assessed using a narrative approach. Data will be reported in simple descriptive tables. DISCUSSION: Our findings are expected to map the existing implementation of MNCH surveillance systems before and during the pandemic, including the influence of the COVID-19 pandemic on MNCH surveillance across countries with different income levels. This may contribute to existing knowledge on the MNCH health surveillance system that could be integrated into the surveillance of emerging diseases, such as COVID-19. SYSTEMATIC REVIEW REGISTRATION: The protocol has been registered on the Open Science Framework ( https://osf.io/bc6t4 ).

A model of acceptance for family caregivers in the management of severe mental disorders.

INTRODUCTION: Managing severe mental disorders at home by family members as caregivers is considered the most efficient option compared to hospital care. However, on the other hand, it can lead to the emergence of physical and psychological burdens on the caregiver. To improve their role optimally in caregiving, families will undergo psychological adaptation, reaching the highest level of acceptance. Other factors, such as stigma, social support, social norms, caregiving experience and personal characteristics, influence family acceptance. This study aims to determine a family acceptance model to enhance the role of the family. MATERIALS AND METHODS: The research instruments used included The McMaster Family Assessment Device Adaptation, IEXPAC, and S.N.Q. 22, F.Q., P.S.Q., Social Support Questionnaire shortened version, The Family Focused Mental Health Practice Questionnaire and extraversion personality questionnaire. The questionnaire was distributed to caregivers with a population of 175 individuals. The sample size of this study was 133 individuals selected through proportional random sampling. The data were analysed using Structural Equation Modeling Partial Least Square (SEM-PLS) with Amos software v.26.0. RESULTS: The phase one research showed that intention and satisfaction are the leading indicators of family acceptance that can influence family roles. At the same time, family acceptance is influenced by personal character (p≤0.001), care experience (p≤0.001), social support (p≤0.001), social norms (p=0.004), symptom severity (p≤0.001), and stigma (p≤0.001). Additionally, family acceptance significantly impacted the family's caregiving role (CR=6.573, p≤0.001). CONCLUSION: It was found that the family acceptance model to improve the family's role in the care of patients with severe mental disorders focuses on the acceptance that the family has to be able to carry out its role well in patients. To improve family acceptance, families still lack the personal character expected in caring for patients with severe mental disorders at home. It is necessary to increase commitment to care and positive values in life.

Perceptions and experiences of the prevention, detection, and management of postpartum haemorrhage: a qualitative evidence synthesis.

BACKGROUND: Postpartum haemorrhage (PPH), defined as blood loss of 500 mL or more after childbirth, is the leading cause of maternal mortality worldwide. It is possible to prevent complications of PPH with timely and appropriate detection and management. However, implementing the best methods of PPH prevention, detection and management can be challenging, particularly in low- and middle-income countries. OBJECTIVES: Our overall objective was to explore the perceptions and experiences of women, community members, lay health workers, and skilled healthcare providers who have experience with PPH or with preventing, detecting, and managing PPH, in community or health facility settings. SEARCH METHODS: We searched MEDLINE, CINAHL, Scopus, and grey literature on 13 November 2022 with no language restrictions. We then performed reference checking and forward citation searching of the included studies. SELECTION CRITERIA: We included qualitative studies and mixed-methods studies with an identifiable qualitative component. We included studies that explored perceptions and experiences of PPH prevention, detection, and management among women, community members, traditional birth attendants, healthcare providers, and managers. DATA COLLECTION AND ANALYSIS: We used three-stage maximum variation sampling to ensure diversity in terms of relevance of the study to the review objectives, richness of data, and coverage of critical contextual elements: setting (region, country income level), perspective (type of participant), and topic (prevention, detection, management). We extracted data using a data extraction form designed for this review. We used thematic synthesis to analyse and synthesise the evidence, and we used the GRADE-CERQual (Confidence in the Evidence from Reviews of Qualitative research) approach to assess our confidence in each finding. To identify factors that may influence intervention implementation, we mapped each review finding to the Theoretical Domains Framework (TDF) and the Capability, Motivation, and Opportunity model of Behaviour change (COM-B). We used the Behaviour Change Wheel to explore implications for practice. MAIN RESULTS: We included 67 studies and sampled 43 studies for our analysis. Most were from low- or middle-income countries (33 studies), and most included the perspectives of women and health workers. We downgraded our confidence in several findings from high confidence to moderate, low, or very-low confidence, mainly due to concerns about how the studies were conducted (methodological limitations) or concerns about missing important perspectives from some types of participants or in some settings (relevance). In many communities, bleeding during and after childbirth is considered "normal" and necessary to expel "impurities" and restore and cleanse the woman's body after pregnancy and birth (moderate confidence). In some communities, people have misconceptions about causes of PPH or believe that PPH is caused by supernatural powers or evil spirits that punish women for ignoring or disobeying social rules or for past mistakes (high confidence). For women who give birth at home or in the community, female family members or traditional birth attendants are the first to recognise excess bleeding after birth (high confidence). Family members typically take the decision of whether and when to seek care if PPH is suspected, and these family members are often influenced by trusted traditional birth attendants or community midwives (high confidence). If PPH is identified for women birthing at home or in the community, decision-making about the subsequent referral and care pathway can be multifaceted and complex (high confidence). First responders to PPH are not always skilled or trained healthcare providers (high confidence). In health facilities, midwives may consider it easy to implement visual estimation of blood loss with a kidney dish or under-pad, but difficult to accurately interpret the amount of blood loss (very low confidence). Quantifying (rather than estimating) blood loss may be a complex and contentious change of practice for health workers (low confidence). Women who gave birth in health facilities and experienced PPH described it as painful, embarrassing, and traumatic. Partners or other family members also found the experience stressful. While some women were dissatisfied with their level of involvement in decision-making for PPH management, others felt health workers were best placed to make decisions (moderate confidence). Inconsistent availability of resources (drugs, medical supplies, blood) causes delays in the timely management of PPH (high confidence). There is limited availability of misoprostol in the community owing to stockouts, poor supply systems, and the difficulty of navigating misoprostol procurement for community health workers (moderate confidence). Health workers described working on the maternity ward as stressful and intense due to short staffing, long shifts, and the unpredictability of emergencies. Exhausted and overwhelmed staff may be unable to appropriately monitor all women, particularly when multiple women are giving birth simultaneously or on the floor of the health facility; this could lead to delays in detecting PPH (moderate confidence). Inadequate staffing, high turnover of skilled health workers, and appointment of lower-level cadres of health workers are key challenges to the provision of quality PPH care (high confidence). Through team-based simulation training, health workers of different cadres (doctors, midwives, lay health workers) can develop a shared mental model to help them work quickly, efficiently, and amicably as a team when managing women with PPH (moderate confidence). AUTHORS' CONCLUSIONS: Our findings highlight how improving PPH prevention, detection, and management is underpinned by a complex system of interacting roles and behaviours (community, women, health workers of different types and with different experiences). Multiple individual, sociocultural, and environmental factors influence the decisions and behaviours of women, families, communities, health workers, and managers. It is crucial to consider the broader health and social systems when designing and implementing PPH interventions to change or influence these behaviours. We have developed a set of prompts that may help programme managers, policymakers, researchers, and other key stakeholders to identify and address factors that affect implementation and scale-up of interventions to improve PPH prevention, detection, and management.

Educating Oncology Staff About the Practice of Writing Condolence Cards.

This evidence-based practice project educated staff about the practice of writing condolence cards to bereaved family members of deceased adult patients in the oncologic setting. In addition, staff were provided with the appr.

The transition of care from farm-based daycare for people with dementia: The perspective of next of kin.

PURPOSE: The aim of the present study was to explore the next of kin's experiences with the transition for people with dementia from a farm-based daycare (FDC) to another service in the municipality. METHODS: The study has a qualitative, descriptive design. Eight semi-structured interviews with next of kin were conducted. The data were analysed in accordance with content analysis. RESULTS: Through the analysis three main categories were developed: (1) Bearing the burden, (2) Being in transition, and (3) Feeling supported. The transition period was highly stressful for next of kin due to the exacerbation of their relatives' dementia symptoms. The next of kin focussed on optimizing the everyday lives of their relatives with dementia, even at the expense of their own well-being. Most participants experienced support from FDC, healthcare services and their informal network. CONCLUSIONS: The study contributes important insights into the next of kin's experiences. Good quality service, close dialog, information, and support between the different part in the transition process, can be useful for the further development of services with good quality and to reduce the negative effects of care on next of kin.

Experiences and Perceptions of Healthcare Stakeholders in Disclosing Errors and Adverse Events to Historically Marginalized Patients.

OBJECTIVES: We sought to assess the experiences and perceptions of healthcare stakeholders involved in the response to historically marginalized patients who have been harmed in healthcare. We investigated the challenges in disclosing errors and adverse events and the types of tools and resources that would better address the needs of historically marginalized patient populations. METHODS: We conducted separate focus groups with two healthcare stakeholder groups: (1) frontline clinicians directly involved in the clinical care of historically marginalized patients and (2) risk and patient safety professionals involved in the hospital response to care breakdowns. We conducted an inductive analysis of the qualitative data to identify thematic clusters. RESULTS: We interviewed 7 clinicians and 5 risk safety professionals, with a total sample size of 12 participants. Participants shared multilevel challenges in responding to historically marginalized patients after harm (system-, organizational-, and patient-level), such as fragmentation of care, lack of standardized protocols, and patient mistrust. Participants also identified their desired tools and resources for disclosure to meet the needs of historically marginalized patients, which included culturally appropriate toolkits, disclosure training, and the inclusion of multidisciplinary healthcare team members in the disclosure process. CONCLUSIONS: Our results suggest that multiple interventions will be needed to achieve the goal of prompt disclosure of errors and adverse events across all populations engaged in health care. Future studies should investigate the perspectives of historically marginalized patients and their family members on how error and adverse event disclosure conversations should unfold.

Family functioning and patients' depressive symptoms: comparison in perceived family function between patients who had an acute ischaemic stroke and their primary family caregivers - a cross-sectional study.

OBJECTIVES: This study aims to compare perceived family functioning between Chinese patients who had an acute ischaemic stroke (AIS) and family caregivers, and explore the association between family functioning and patients' depressive symptoms. DESIGN: This is a cross-sectional study design. SETTING: Stroke centres of two tertiary hospitals in Nanjing, China. PARTICIPANTS: One hundred and sixty-nine dyads of patients who had an AIS and family caregivers. PRIMARY AND SECONDARY OUTCOME MEASURES: Family functioning of patients who had an AIS and their primary family caregivers was assessed by the Family Assessment Device (FAD, Chinese version). Depressive symptoms of patients who had an AIS was assessed by the Centre for Epidemiological Studies Depression Scale. We test the agreement and differences in family functioning. Multivariate linear regression models were used to test the association of differences of family functioning within dyads with patients' depressive symptoms. RESULTS: AIS families demonstrated unhealthy family functioning. A total of 115 patients (76.9%) and 124 caregivers (73.4%) had a score of 2 or higher in FAD-general functioning (GF), indicating unhealthy family functioning. The intraclass correlation coefficient of FAD subdomain between patients who had an AIS and caregivers ranged from 0.15 to 0.55, which indicating the agreement of family functioning within dyads was poor to moderate. There was a significant difference between the FAD-GF scores of the patients and those of their caregivers (Z=-2.631, p=0.009), with caregivers reporting poorer general family functioning. Poor family functioning and greater difference of perceived family functioning within dyads were related to higher level of patients' depressive symptoms (ß=5.163, p<0.001, ß=5.534, p<0.001, respectively). CONCLUSIONS: These findings indicate that healthcare professionals should assess family functioning in both patients who had a stroke and caregivers. Improvement of family function and decreasing discrepancies within dyads may be helpful for relieving patients' depressive symptoms.

[News in intensive care unit communication]. / Aktuelles aus der Kommunikation in der Intensivmedizin.

Current publications on the topic of communication in intensive care units (ITS) are shaped by the experiences of the COVID19 pandemic and the restrictions on personal contact and communication experienced during this time. Virtual, computer-based and telemedical concepts have grown out of this situation with limited contact and communication possibilities with patients and their relatives, but also between the individual service providers in the health system. It can also be assumed that artificial intelligence will increasingly be an issue in communication in intensive care units in the coming years. However, the significance, consequences and risks of the use of these new possibilities remain to be seen.

Behavior Intervention Response Team: Piloting an Effective Means to Manage Patient- and Family-Disruptive Behaviors.

GOAL: This article describes the development and implementation of a behavior intervention response team (BIRT). Pilot data indicate the successful implementation of BIRT interventions with patients and families and the positive staff response to these interventions. METHODS: Patient- and family-disruptive behaviors are increasing in hospitals. Those behaviors arise from stress, financial burdens, and the mental weight of the patient's medical condition on the family. These distressed patients and their families tax an already overwhelmed staff, exacerbating the caregivers' exhaustion, depersonalization, and frustration. We recognized the need to proactively address these disruptions at our children's hospital with an interdisciplinary response. Disciplines engaged in the BIRT development included risk management, behavioral health, child life, service excellence, patient and family services, social work, and chaplaincy. Following multiple brainstorming sessions, we created a comprehensive, clear intervention strategy to engage with a disruptive patient or family. The BIRT was developed to work with both the family and their medical team to intervene at the first signs of potential disruption. PRINCIPAL FINDINGS: With the BIRT, we were able to reduce disruptive behaviors and limit the subsequent removal of problematic individuals from the facility. Of the families who worked with the BIRT, 75.8% required no postintervention follow-up. PRACTICAL APPLICATIONS: The development of a BIRT can help head off disruptive behaviors and improve family-medical team relationships to support the highest quality and safest healthcare.

[The impact of caregiving on the emotional well-being and health of family caregivers.] / A gondozás hatása a családi gondozók érzelmi jóllétére és egészségére.

INTRODUCTION: Family caregivers, who take care of older relatives, bear a heavy burden that can detrimentally affect their physical health and emotional well-being. OBJECTIVE: This study aims to explore the subjective perceptions of family caregiving's impact on physical health and emotional well-being, the experience of feeling overburdened by caregiving responsibilities, and the subjective perceptions of health among caregivers of older relatives. Data from three waves of online questionnaire surveys conducted in 2018, 2020, and 2022 were analyzed. METHOD: The COPE Index items were used to measure subjective perceptions of the impact of caregiving on physical health and emotional well-being and perceptions of being overburdened by caregiving. We present descriptive statistics and chi-square test analyses. RESULTS: In all three waves, the majority of respondents frequently or always perceived a negative impact of caregiving on their emotional well-being and physical health, with more than half always or often experiencing caregiver overburdening. A significant correlation was observed between the perceived impact of caregiving on physical health and emotional well-being, over 70% of respondents provided similar responses to both questions. Furthermore, a significant relationship is between the prevalence of caregiver overburden and subjective perceptions of health, with those experiencing caregiver overload being more likely to report poor or very poor health. Over 60% of participants indicated frequent or constant overburden of care, with this subgroup exhibiting a higher likelihood of perceiving their health as poor or very poor. DISCUSSION: Our results demonstrate that the caregiving burden affects both physical and emotional well-being. A significant proportion of family caregivers experience detrimental effects on their physical health and emotional well-being due to caregiving responsibilities. These negative effects were reported simultaneously by the majority of respondents. CONCLUSION: Caregiving can have negative consequences on the health of family caregivers. Our research underscores the importance of preventive measures. Orv Hetil. 2023; 164(40): 1583-1591.

Kinesin Family Member C1 (KIFC1/HSET) Underlies Aggressive Disease in Androgen Receptor-Low and Basal-Like Triple-Negative Breast Cancers.

Quadruple-negative breast cancer (QNBC) lacks traditional actionable targets, including androgen receptor (AR). QNBC disproportionately afflicts and impacts patients of African genetic ancestry. Kinesin family member C1 (KIFC1/HSET), a centrosome clustering protein that prevents cancer cells from undergoing centrosome-amplification-induced apoptosis, has been reported to be upregulated in TNBCs and African-American (AA) TNBCs. Herein, we analyzed KIFC1 RNA levels and their associations with clinical features and outcomes among AR-low and AR-high TNBC tumors in three distinct publicly available gene expression datasets and in the breast cancer gene expression database (bc-GenExMiner). KIFC1 levels were significantly higher in AR-low and basal-like TNBCs than in AR-high and non-basal-like TNBCs, irrespective of the stage, grade, tumor size, and lymph node status. KIFC1 levels were also upregulated in AR-low tumors relative to AR-high tumors among Black and premenopausal women with TNBC. High KIFC1 levels conferred significantly shorter overall survival, disease-free survival, and distant metastasis-free survival among AR-low and basal-like TNBC patients in Kaplan-Meier analyses. In conclusion, KIFC1 levels may be upregulated in AR-low tumors and, specifically, in those of African descent, wherein it may promote poor outcomes. KIFC1 may be an actionable cancer-cell-specific target for the AR-low TNBC subpopulation and could aid in alleviating racial disparities in TNBC outcomes.

Pre- and Post-COVID-19 Outcomes for Israelis With Intellectual and Developmental Disabilities in the Community.

This study is among the first pre-post examinations to explore differences in subjective well-being, adaptive and maladaptive behavior, close relationships, community integration, family members' satisfaction with residential and community living settings, and family contact before and after the COVID-19 outbreak. Participants demonstrated better life satisfaction and adaptive behavior before COVID-19 than after COVID-19. Participants reported closer relationships with family members and peers before COVID-19 and closer relationships with staff members after COVID-19. The findings reveal mixed, although mostly negative, effects of the pandemic on people with intellectual and developmental disabilities in the community in Israel, in accord with extant comparative research.

Home Isolated COVID-19 Patients Adhering To Recommended Guidelines: A Cross Sectional Survey In Karachi.

Objectives: To assess compliance level of coronavirus disease-2019 patients with recommended isolation guidelines. METHODS: The cross-sectional phone-based survey was conducted in Karachi, from March to October 2020 after approval from the ethics review board of Dow University of Health Sciences, Karachi, and comprised patients of either gender who had been tested positive and were advised home isolation due to mild/asymptomatic nature of their infection. Data was collected using a predesigned 42-item questionnaire in the light of the guidelines issued by the National Institutes of Health, Islamabad, Pakistan. Data was analysed using SPSS 20. RESULTS: Of the 450 patients approached, 305(68%) responded; 176(57.7%) females and 129(41.1%) males. The overall mean age was 35.16±14.15 years (range: 13-78 years). Of the total, 9(2.95%) patients did not isolate themselves at all, 51(16.7%) came into contact with other people, 75(24.6%) broke the home isolation and 69(22.6%) were sharing their rooms with other family members. Overall, 260(85.2%) participants were keeping themselves updated with the changes in the guidelines through conventional and social media. CONCLUSIONS: Coronavirus disease-2019 patients who were advised home isolation adhered to some but not all of the recommendations.