Development and evaluation of a patient education programme for children, adolescents, and young adults with differences of sex development (DSD) and their parents: study protocol of Empower-DSD

Background: Differences in sexual development (DSD) are rare diseases, which affect the chromosomal, anatomical or gonadal sex differentiation. Although patient education is recommended as essential in a holistic care approach, standardised programmes are still lacking. The present protocol describes the aims, study design and methods of the Empower-DSD project, which developed an age-adapted multidisciplinary education programme to improve the diagnosis-specific knowledge, skills and empowerment of patients and their parents. Methods: The new patient education programme was developed for children, adolescents and young adults with congenital adrenal hyperplasia, Turner syndrome, Klinefelter syndrome or XX-/or XY-DSD and their parents. The quantitative and qualitative evaluation methods include standardised questionnaires, semi-structured interviews, and participatory observation. The main outcomes (assessed three and six months after the end of the programme) are health-related quality of life, disease burden, coping, and diagnosis-specific knowledge. The qualitative evaluation examines individual expectations and perceptions of the programme. The results of the quantitative and qualitative evaluation will be triangulated. Discussion: The study Empower-DSD was designed to reduce knowledge gaps regarding the feasibility, acceptance and effects of standardised patient education programmes for children and youth with DSD and their parents. A modular structured patient education programme with four generic and three diagnosis-specific modules based on the ModuS concept previously established for other chronic diseases was developed. The topics, learning objectives and recommended teaching methods are summarised in the structured curricula, one for each diagnosis and age group. At five study centres, 56 trainers were qualified for the implementation of the training programmes. A total of 336 subjects have been already enrolled in the study. The recruitment will go on until August 2022, the last follow-up survey is scheduled for February 2023. The results will help improve multidisciplinary and integrated care for children and youth with DSD and their families. Trial registration: German Clinical Trials Register, DRKS00023096. Registered 8 October 2020 - Retrospectively registered

Complex interplay between moral distress and other risk factors of burnout in ICU professionals: findings from a cross-sectional survey study.

BACKGROUND: Burnout threatens intensive care unit (ICU) professionals' capacity to provide high-quality care. Moral distress is previously considered a root cause of burnout, but there are other risk factors of burnout such as personality, work-life balance and culture. This study aimed to disentangle the associations of ICU professionals' moral distress and other risk factors with the components of burnout-emotional exhaustion, depersonalisation and personal accomplishment-suggesting informed burnout prevention strategies. METHODS: Cross-sectional survey completed in 2019 of ICU professionals in two Dutch hospitals. The survey included validated measure for burnout (the Dutch Maslach Burnout Inventory), moral distress (Moral Distress Scale), personality (short Big Five Inventory), work-home balance (Survey Work-Home Interaction Nijmegen) and organisational culture (Culture of Care Barometer). Each of the three components of burnout was analysed as a separate outcome, and for each of the components, a separate regression analysis was carried out. RESULTS: 251 ICU professionals responded to the survey (response rate: 53.3%). Burnout prevalence was 22.7%. Findings showed that moral distress was associated with emotional exhaustion (β=0.18, 95% CI 0.9 to 0.26) and depersonalisation (β=0.19, 95% CI 0.10 to 0.28) and with increased emotional exhaustion mediated by negative work-to-home spillover (β=0.09, 95% CI 0.04 to 0.13). Support from direct supervisors mitigates the association between moral distress and emotional exhaustion (β=0.16, 95% CI 0.04 to 0.27). CONCLUSIONS: Understanding moral distress as a root cause of burnout is too simplified. There is an important interplay between moral distress and work-home imbalance. Interventions that support individual coping with moral distress and a work-home imbalance, and the support of direct supervisors, are paramount to prevent burnout in physicians and nurses

Development of Moral Injury in ICU Professionals During the COVID-19 Pandemic: A Prospective Serial Interview Study

During the COVID-19 pandemic, ICU professionals have faced moral problems that may cause moral injury. This study explored whether, how, and when moral injury among ICU professionals developed in the course of the COVID-19 pandemic. DESIGN: This is a prospective qualitative serial interview study. SETTING: Two hospitals among which one university medical center and one teaching hospital in the Netherlands. SUBJECTS: Twenty-six ICU professionals who worked during the COVID-19 pandemic. INTERVENTIONS: None. MEASUREMENTS MAIN RESULTS: In-depth interviews with follow-up after 6 and 12 months. In total, 62 interviews were conducted. ICU professionals narrated about anticipatory worry about life and death decisions, lack of knowledge and prognostic uncertainty about COVID-19, powerlessness and failure, abandonment or betrayal by society, politics, or the healthcare organization, numbness toward patients and families, and disorientation and self-alienation. Centrally, ICU professionals describe longitudinal processes by which they gradually numbed themselves emotionally from patients and families as well as potentially impactful events in their work. For some ICU professionals, organizational, societal, and political responses to the pandemic contributed to numbness, loss of motivation, and self-alienation. CONCLUSIONS: ICU professionals exhibit symptoms of moral injury such as feelings of betrayal, detachment, self-alienation, and disorientation. Healthcare organizations and ICU professionals themselves should be cognizant that these feelings may indicate that professionals might have developed moral injury or that it may yet develop in the future. Awareness should be raised about moral injury and should be followed up by asking morally injured professionals what they need, so as to not risk offering unwanted help

In Situ Compatibilization of PS/EPDM Blends during Ultrasonic Extrusion

Tato práce se zabývá novým způsobem kompatibilizace polymerního blendu PS/EPDM při kterém se využívá ultrazvuku ke snížení mezifázového napětí. Speciální pozornost byla věnována efektu ultrazvuku na mechanické vlastnosti, morfologii a reologické chování blendu. Testování mechanických vlastností prokázalo, že rázová houževnatost PS/EPDM blendu zprvu roste s rostoucí intenzitou ultrazvuku, což může být přičítáno zlepšené interakci obou složek. Při velmi vysokých intenzitách však byl pozorován pokles rázové houževnatosti způsobený pravděpodobně převládnutím degradačního mechanismu. Komplexní viskosita blendu po ozáření vzrostla, avšak byl zjištěn její pokles v případě dlouhých ozařovacích časů a vysokých intenzit ultrazvuku. Skenovací elektronová mikroskopie prokázala zmenšení EPDM domén v PS matrici po ozáření a tím i příznivý vliv ultrazvukového záření na kompatibilitu blendu.This paper presents a novel compatibilization method, where ultrasonic oscillations are applied onto PS/EPDM blends during extrusion in order to improve their interfacial adhesion. Emphasis was given on the effect of the ultrasonic radiation on mechanical properties, phase morphology and rheological response of the blend. As mechanical tests revealed, impact-strength of the PS/EPDM rises at first with increasing ultrasonic intensity indicating improved interactions between both phases. However, slight decrease of blend#s toughness was observed at very high ultrasonic intensity, indicating prevail of degradation process over compatibilization effect. Complex viscosity of the irradiated blend was found to be higher in comparison with the untreated extrudate, but it decreased again with longer time of irradiation and increasing intensity. Concerning phase morphology, SEM analysis showed that ultrasonic oscillations cause size reduction of tough EPDM particles distributed in the brittle PS matri

Development of structural debris flow fragility curves (debris flow buildings resistance) using momentum flux rate as a hazard parameter

Societal risks associated with debris flow hazards are significant and likely to escalate due to global population growth trends and the compounding effects of climate change. Quantitative risk assessment methods (QRA) provide a means of anticipating the likely impacts and consequences of settlement in areas susceptible to landslide activity and are increasingly being used to inform land use decisions that seek to increase disaster resilience through mitigation and/or adaptation. Current QRA methods for debris flow hazards are based primarily on empirical vulnerability functions that relate hazard intensity (depth, velocity, etc.) to expected levels of loss for a given asset of concern, i.e. most of current methods are dedicated to loss-intensity relations. Though grounded in observed cause-effect relationships, empirical vulnerability functions are not designed to predict the capacity of a building to withstand the physical impacts of a debris flow event, or the related uncertainties associated with modelling building performance as a function of variable debris flow parameters. This paper describes a methodology for developing functions that relate hazard intensity to probability of structural damage, i.e., fragility functions, rather than vulnerability functions, based on the combined hydrodynamic forces of a debris flow event (hazard level) and the inherent structural resistance of building typologies that are common in rural mountainous settings (building performance). Hazard level includes a hydrodynamic force variable (FDF), which accounts for the combined effects of debris flow depth and velocity, i.e. momentum flux (hv2), material density (?) and related flow characteristics including drag (Cd) and impact coefficient (Kd). Building performance is measured in terms of yield strength (Ay), ultimate lateral capacity (AU) and weight to breadth ratios (W/B) defined for a portfolio building types that are common in mountain settlements. Collectively, these model parameters are combined using probabilistic methods to produce building-specific fragility functions that describe the probability of reaching or exceeding successive thresholds of structural damage over a range of hazard intensity values, expressed in terms of momentum flux. Validation of the proposed fragility model is based on a comparison between model outputs and observed cause-effect relationships for recent debris flow events in South Korea and in Colombia. Debris flow impact momentum fluxes, capable of resulting in complete damage to unreinforced masonry buildings (URM) in those regions are estimated to be on the order of 24 m3/s2, consistent with field-based observations. Results of our study offer additional capabilities for assessing risks associated with urban growth and development in areas exposed to debris flow hazards. © 2018 Elsevier B.V