This speech discusses how the professorship intends to support practitioners in the nursing domain and contribute to shaping nursing leadership and each person's professional individuality. The title of the speech, “Notes on Nursing 2.0,” is particularly intended to emphasize the need for these changes in the nursing domain. Not by assuming that nothing has changed in care and nursing since Nightingale's time. There has. Being educated in the professional domain is not only a given but a requirement. The knowledge domain of care and nursing has developed far and wide in nursing diagnostics and standards. Nursing science research, which Nightingale once started as the first female statistician in the British Kingdom, has firmly established itself in education and practice. Wanting to be of significance to others out of compassion is still the professional motivation, but there is no longer a subservient servitude (Cingel van der, 2012). At the same time, wholehearted leadership is not yet taken for granted in daily practice and optimal professional practice falters due to an equality principle of differently educated caregivers and nurses that has been held for too long. That is the need for change to which this 2.0 version “Notes on Nursing” and the lectorate want to contribute in the coming years. Chapter 1, through the metaphors in the story “The Cat Who Looked at the King,” describes the vision of emancipatory action research and the change principles that the lectorate will deploy. Chapter 2 contains the reason, mission and lines of research that are interrelated within the lectorate. Chapters 3 and 4 address the themes of identity and leadership, discussing their interrelationship with professional practice and developing a research culture. In addition, specific aspects that influence practice and work culture today are addressed, and how the lectorate contributes specifically to the development of nursing leadership and the formation of professional identity in the relevant domain is described. Chapter 5 contains a summary of the principles on which the research program is based, as well as information on current and future projects. Chapter 6 provides background information on the lector and the members of the knowledge circle.
BACKGROUND: Nursing home residents are mainly inactive. Nursing staff can encourage residents to perform functional activities during daily care activities. This study examines 1) the extent to which nursing staff perceive that they encourage functional activity in nursing home residents and 2) the associations between these nursing behaviors and professional characteristics, contextual factors, and information-seeking behaviors. METHODS: In this cross-sectional study, 368 registered nurses and certified nurse assistants, working in somatic and psychogeriatric wards of forty-one nursing homes throughout the Netherlands participated. Self-reported data were collected with a questionnaire, comprising the MAINtAIN-behaviors, which assesses the extent to which nursing staff encourage functional activities, including different activities of daily living (ADL), household activities, and miscellaneous encouraging activities (e.g., discouraging informal caregivers from taking over activities residents can do themselves). Additional data collected included professional characteristics (e.g., age), contextual factors (e.g., ward type), and information-seeking behaviors (e.g., reading professional journals). Descriptive statistics were used to determine the extent to which functional activities were encouraged. Hierarchical linear regression analyses were performed to determine the associations between the encouragement of functional activities and other factors. RESULTS: Nursing staff perceived that household activities (mean 4.1 (scale range 1-9), SD 1.9) were less often encouraged than ADL (mean 6.9, SD 1.2) or miscellaneous activities (mean 6.7, SD 1.5). The percentage of nursing staff stating that different household activities, ADL, or miscellaneous activities were almost always encouraged ranged from 11 to 45%, 41 to 86%, and 50 to 83% per activity, respectively. The extent to which these activities were encouraged differed for some of the professional characteristics, contextual factors, or information-seeking behaviors, but no consistent pattern in associations emerged. CONCLUSIONS: According to nursing staff, household activities are not as often encouraged as ADL or miscellaneous activities. Professional characteristics, contextual factors, and information-seeking behaviors are not consistently associated with the encouragement of functional activity. Nursing staff should also focus on improving the encouragement of household activities. Future research could examine the role of other factors in encouraging functional activity, such as experienced barriers, and assess to what extent the perception of nursing staff corresponds with their actual behavior.
Objective: To obtain insight into (a) the prevalence of nursing staff–experienced barriers regarding the promotion of functional activity among nursing home residents, and (b) the association between these barriers and nursing staff–perceived promotion of functional activity. Method: Barriers experienced by 368 nurses from 41 nursing homes in the Netherlands were measured with the MAastrIcht Nurses Activity INventory (MAINtAIN)-barriers; perceived promotion of functional activities was measured with the MAINtAIN-behaviors. Descriptive statistics and hierarchical linear regression analyses were performed. Results: Most often experienced barriers were staffing levels, capabilities of residents, and availability of resources. Barriers that were most strongly associated with the promotion of functional activity were communication within the team, (a lack of) referral to responsibilities, and care routines. Discussion: Barriers that are most often experienced among nursing staff are not necessarily the barriers that are most strongly associated with nursing staff–perceived promotion of functional activity.
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.
