Nursing Leadership is an important competence to develop in order to provide quality of care and prevent attrition of nurses. This research program looked into the perceptions and experiences of nurses on practising leadership. Next to that supporting the development of nursing leadership was addressed. The program has a mixed-method, action research design in which 75 in-depth interviews and 24 focus group interviews and quantitative data of 435 nurses form the backbone. According to hospital nurses, nursing leadership is related to proactiveness and voicing expertise in order to deliver good nursing care. Nevertheless, they do not feel fully competent and knowledge deficits were detected on aspects of the bachelor nursing profile, such as evidence based practice. Working-culture factors can either inhibit or encourage nursing leadership. The further awareness of unconsciously using expertise and knowledge deficits as well as team development towards a continuous safe learning environment are necessary steps for the enhancement of nursing leadership. A Nursing Leadership model was developed in which generic personal leadership competencies combined with expertise of the nurses' level of education and degrees form the essence of shared leadership in teams focussed on the realisation of good nursing care.
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Most nurse leadership studies have concentrated on a classical, heroic, and hierarchical view of leadership. However, critical leadership studies have argued the need for more insight into leadership in daily nursing practices. Nurses must align their professional standards and opinions on quality of care with those of other professionals, management, and patients. They want to achieve better outcomes for their patients but also feel disciplined and controlled. To deal with this, nurses challenge the status quo by showing rebel nurse leadership. In this paper, we describe 47 nurses’ experiences with rebel nurse leadership from a leadership-as-practice perspective. In eight focus groups, nurses from two hospitals and one long-term care organization shared their experiences of rebel nurse leadership practices. They illustrated the differences between “bad” and “good” rebels. Knowledge, work experience, and patient-driven motivation were considered necessary for “good” rebel leadership. The participants also explained that continuous social influencing is important while exploring and challenging the boundaries set by colleagues and management. Credibility, trust, autonomy, freedom, and preserving relationships determined whether rebel nurses acted visibly or invisibly. Ultimately, this study refines the concept of rebel nurse leadership, gives a better understanding of how this occurs in nursing practice, and give insights into the challenges faced when studying nursing leadership practices.
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Most nurse leadership studies have concentrated on a classical, heroic, and hierarchical view of leadership. However, critical leadership studies have argued the need for more insight into leadership in daily nursing practices. Nurses must align their professional standards and opinions on quality of care with those of other professionals, management, and patients. They want to achieve better outcomes for their patients but also feel disciplined and controlled. To deal with this, nurses challenge the status quo by showing rebel nurse leadership. In this paper, we describe 47 nurses’ experiences with rebel nurse leadership from a leadership-as-practice perspective. In eight focus groups, nurses from two hospitals and one long-term care organization shared their experiences of rebel nurse leadership practices. They illustrated the differences between “bad” and “good” rebels. Knowledge, work experience, and patient-driven motivation were considered necessary for “good” rebel leadership. The participants also explained that continuous social influencing is important while exploring and challenging the boundaries set by colleagues and management. Credibility, trust, autonomy, freedom, and preserving relationships determined whether rebel nurses acted visibly or invisibly. Ultimately, this study refines the concept of rebel nurse leadership, gives a better understanding of how this occurs in nursing practice, and give insights into the challenges faced when studying nursing leadership practices.
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The project aims to improve palliative care in China through the competence development of Chinese teachers, professionals, and students focusing on the horizontal priority of digital transformation.Palliative care (PC) has been recognised as a public health priority, and during recent years, has seen advances in several aspects. However, severe inequities in the access and availability of PC worldwide remain. Annually, approximately 56.8 million people need palliative care, where 25.7% of the care focuses on the last year of person’s life (Connor, 2020).China has set aims for reaching the health care standards of the developed countries by 2030 through the Healthy China Strategy 2030, where one of the improvement areas in health care includes palliative care, thus continuing the previous efforts.The project provides a constructive, holistic, and innovative set of actions aimed at resulting in lasting outcomes and continued development of palliative care education and services. Raising the awareness of all stakeholders on palliative care, including the public, is highly relevant and needed. Evidence based practice guidelines and education are urgently required for both general and specialised palliative care levels, to increase the competencies for health educators, professionals, and students. This is to improve the availability and quality of person-centered palliative care in China. Considering the aging population, increase in various chronic illnesses, the challenging care environment, and the moderate health care resources, competence development and the utilisation of digitalisation in palliative care are paramount in supporting the transition of experts into the palliative care practice environment.General objective of the project is to enhance the competences in palliative care in China through education and training to improve the quality of life for citizens. Project develops the competences of current and future health care professionals in China to transform the palliative care theory and practice to impact the target groups and the society in the long-term. As recognised by the European Association for Palliative Care (EAPC), palliative care competences need to be developed in collaboration. This includes shared willingness to learn from each other to improve the sought outcomes in palliative care (EAPC 2019). Since all individuals have a right to health care, project develops person-centered and culturally sensitive practices taking into consideration ethics and social norms. As concepts around palliative care can focus on physical, psychological, social, or spiritual related illnesses (WHO 2020), project develops innovative pedagogy focusing on evidence-based practice, communication, and competence development utilising digital methods and tools. Concepts of reflection, values and views are in the forefront to improve palliative care for the future. Important aspects in project development include health promotion, digital competences and digital health literacy skills of professionals, patients, and their caregivers. Project objective is tied to the principles of the European Commission’s (EU) Digital Decade that stresses the importance of placing people and their rights in the forefront of the digital transformation, while enhancing solidarity, inclusion, freedom of choice and participation. In addition, concepts of safety, security, empowerment, and the promotion of sustainable actions are valued. (European Commission: Digital targets for 2030).Through the existing collaboration, strategic focus areas of the partners, and the principles of the call, the PalcNet project consortium was formed by the following partners: JAMK University of Applied Sciences (JAMK ), Ramon Llull University (URL), Hanze University of Applied Sciences (HUAS), Beijing Union Medical College Hospital (PUMCH), Guangzhou Health Science College (GHSC), Beihua University (BHU), and Harbin Medical University (HMU). As project develops new knowledge, innovations and practice through capacity building, finalisation of the consortium considered partners development strategy regarding health care, (especially palliative care), ability to create long-term impact, including the focus on enhancing higher education according to the horizontal priority. In addition, partners’ expertise and geographical location was also considered important to facilitate long-term impact of the results.Primary target groups of the project include partner country’s (China) staff members, teachers, researchers, health care professionals and bachelor level students engaging in project implementation. Secondary target groups include those groups who will use the outputs and results and continue in further development in palliative care upon the lifetime of the project.
Huntington’s disease (HD) and various spinocerebellar ataxias (SCA) are autosomal dominantly inherited neurodegenerative disorders caused by a CAG repeat expansion in the disease-related gene1. The impact of HD and SCA on families and individuals is enormous and far reaching, as patients typically display first symptoms during midlife. HD is characterized by unwanted choreatic movements, behavioral and psychiatric disturbances and dementia. SCAs are mainly characterized by ataxia but also other symptoms including cognitive deficits, similarly affecting quality of life and leading to disability. These problems worsen as the disease progresses and affected individuals are no longer able to work, drive, or care for themselves. It places an enormous burden on their family and caregivers, and patients will require intensive nursing home care when disease progresses, and lifespan is reduced. Although the clinical and pathological phenotypes are distinct for each CAG repeat expansion disorder, it is thought that similar molecular mechanisms underlie the effect of expanded CAG repeats in different genes. The predicted Age of Onset (AO) for both HD, SCA1 and SCA3 (and 5 other CAG-repeat diseases) is based on the polyQ expansion, but the CAG/polyQ determines the AO only for 50% (see figure below). A large variety on AO is observed, especially for the most common range between 40 and 50 repeats11,12. Large differences in onset, especially in the range 40-50 CAGs not only imply that current individual predictions for AO are imprecise (affecting important life decisions that patients need to make and also hampering assessment of potential onset-delaying intervention) but also do offer optimism that (patient-related) factors exist that can delay the onset of disease.To address both items, we need to generate a better model, based on patient-derived cells that generates parameters that not only mirror the CAG-repeat length dependency of these diseases, but that also better predicts inter-patient variations in disease susceptibility and effectiveness of interventions. Hereto, we will use a staggered project design as explained in 5.1, in which we first will determine which cellular and molecular determinants (referred to as landscapes) in isogenic iPSC models are associated with increased CAG repeat lengths using deep-learning algorithms (DLA) (WP1). Hereto, we will use a well characterized control cell line in which we modify the CAG repeat length in the endogenous ataxin-1, Ataxin-3 and Huntingtin gene from wildtype Q repeats to intermediate to adult onset and juvenile polyQ repeats. We will next expand the model with cells from the 3 (SCA1, SCA3, and HD) existing and new cohorts of early-onset, adult-onset and late-onset/intermediate repeat patients for which, besides accurate AO information, also clinical parameters (MRI scans, liquor markers etc) will be (made) available. This will be used for validation and to fine-tune the molecular landscapes (again using DLA) towards the best prediction of individual patient related clinical markers and AO (WP3). The same models and (most relevant) landscapes will also be used for evaluations of novel mutant protein lowering strategies as will emerge from WP4.This overall development process of landscape prediction is an iterative process that involves (a) data processing (WP5) (b) unsupervised data exploration and dimensionality reduction to find patterns in data and create “labels” for similarity and (c) development of data supervised Deep Learning (DL) models for landscape prediction based on the labels from previous step. Each iteration starts with data that is generated and deployed according to FAIR principles, and the developed deep learning system will be instrumental to connect these WPs. Insights in algorithm sensitivity from the predictive models will form the basis for discussion with field experts on the distinction and phenotypic consequences. While full development of accurate diagnostics might go beyond the timespan of the 5 year project, ideally our final landscapes can be used for new genetic counselling: when somebody is positive for the gene, can we use his/her cells, feed it into the generated cell-based model and better predict the AO and severity? While this will answer questions from clinicians and patient communities, it will also generate new ones, which is why we will study the ethical implications of such improved diagnostics in advance (WP6).
Het is essentieel dat cliënten na een opname in een ziekenhuis of revalidatiecentrum blijven werken aan een actieve leefstijl die bijdraagt aan preventie, participatie en kwaliteit van leven. Hoewel gezondheid en gedrag primair de verantwoordelijkheid is van mensen zelf, is niet iedereen in staat na thuiskomst het geleerde zelfstandig voort te zetten. Na een opname wordt de transitie naar de thuissituatie door patiënten als moeilijk ervaren, soms met achteruitgang en heropnames als gevolg. Zorgprofessionals herkennen dit ook en willen de transitie naar huis beter vormgeven. De centrale vraag die Hogeschool Leiden (Lectoraat Eigen Regie bij Fysiotherapie en Beweegzorg), Haagse Hogeschool (Lectoraat Revalidatie en Technologie), Hanze Hogeschool (Lectoraat Healthy Ageing, Allied Health & Nursing Care), zorginstellingen Basalt (revalidatiecentrum) en Nij Smellinghe (ziekenhuis) en fysiotherapiepraktijken Medifit en Havenfysio (MKB-bedrijf) willen beantwoorden is: WAT is, gezien vanuit het perspectief van de ervaringsdeskundige cliënt, bepalend voor het fysiek actief blijven en integreren van duurzaam beweeggedrag in de eigen thuissituatie tot 1 jaar na transitie vanuit de intramurale zorg. Vanuit positieve gezondheid wordt breed onderzocht hoe mensen de fysieke, sociale en emotionele uitdagingen in relatie tot fysieke activiteit hebben benaderd en ervaren in hun thuissituatie na intramurale zorgopname. Cliënten wordt gevraagd naar hun meest waardevolle en frustrerende ervaringen en activiteiten met betrekking tot fysiek actief blijven in de eerste 3 tot 12 maanden na thuiskomst. Door het gebruik van storytelling worden de ervaringsdeskundigheid en dieperliggende motivaties van cliënten centraal gesteld binnen hun persoonlijke thuissituatie. We brengen vervolgens beïnvloedbare factoren van fysieke activiteit in de thuissituatie van mensen in kaart vanuit de perspectieven positieve gezondheid, eigen regie en gedrag. Op basis van de bevindingen wordt in co-creatie een innovatieve interventie agenda opgeleverd over hoe de betrokken partners fysieke activiteit in de thuissituatie kunnen ondersteunen en hoe de samenwerking in de zorgketen beter georganiseerd kan worden.
