Introduction: Shared decision-making is considered to be a key aspect of woman-centered care and a strategy to improve communication, respect, and satisfaction. This scoping review identified studies that used a shared decision-making support strategy as the primary intervention in the context of perinatal care. Methods: A literature search of PubMed, CINAHL, Cochrane Library, PsycINFO, and SCOPUS databases was completed for English-language studies conducted from January 2000 through November 2019 that examined the impact of a shared decision-making support strategy on a perinatal decision (such as choice of mode of birth after prior cesarean birth). Studies that only examined the use of a decision aid were excluded. Nine studies met inclusion criteria and were examined for the nature of the shared decision-making intervention as well as outcome measures such as decisional evaluation, including decisional conflict, decisional regret, and certainty. Results: The 9 included studies were heterogeneous with regard to shared decision-making interventions and measured outcomes and were performed in different countries and in a variety of perinatal situations, such as women facing the choice of mode of birth after prior cesarean birth. The impact of a shared decision-making intervention on women’s perception of shared decision-making and on their experiences of the decision-making process were mixed. There may be a decrease in decisional conflict and regret related to feeling informed, but no change in decisional certainty. Discussion: Despite the call to increase the use of shared decision-making in perinatal care, there are few studies that have examined the effects of a shared decision-making support strategy. Further studies that include antepartum and intrapartum settings, which include common perinatal decisions such as induction of labor, are needed. In addition, clear guidance and strategies for successfully integrating shared decision-making and practice recommendations would help women and health care providers navigate these complex decisions.
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In the decision-making environment of evidence-based practice, the following three sources of information must be integrated: research evidence of the intervention, clinical expertise, and the patient’s values. In reality, evidence-based practice usually focuses on research evidence (which may be translated into clinical practice guidelines) and clinical expertise without considering the individual patient’s values. The shared decision-making model seems to be helpful in the integration of the individual patient’s values in evidence-based practice. We aim to discuss the relevance of shared decision making in chronic care and to suggest how it can be integrated with evidence-based practice in nursing. We start by describing the following three possible approaches to guide the decision-making process: the paternalistic approach, the informed approach, and the shared decision-making approach. Implementation of shared decision making has gained considerable interest in cases lacking a strong best-treatment recommendation, and when the available treatment options are equivalent to some extent. We discuss that in chronic care it is important to always invite the patient to participate in the decision-making process. We delineate the following six attributes of health care interventions in chronic care that influence the degree of shared decision making: the level of research evidence, the number of available intervention options, the burden of side effects, the impact on lifestyle, the patient group values, and the impact on resources. Furthermore, the patient’s willingness to participate in shared decision making, the clinical expertise of the nurse, and the context in which the decision making takes place affect the shared decision-making process. A knowledgeable and skilled nurse with a positive attitude towards shared decision making – integrated with evidence-based practice – can facilitate the shared decision-making process. We conclude that nurses as well as other health care professionals in chronic care should integrate shared decision making with evidence- based practice to deliver patient-centred care.
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Objective: To construct the underlying value structure of shared decision making (SDM) models. Method: We included previously identified SDM models (n = 40) and 15 additional ones. Using a thematic analysis, we coded the data using Schwartz’s value theory to define values in SDM and to investigate value relations. Results: We identified and defined eight values and developed three themes based on their relations: shared control, a safe and supportive environment, and decisions tailored to patients. We constructed a value structure based on the value relations and themes: the interplay of healthcare professionals’ (HCPs) and patients’ skills [Achievement], support for a patient [Benevolence], and a good relationship between HCP and patient [Security] all facilitate patients’ autonomy [Self-Direction]. These values enable a more balanced relationship between HCP and patient and tailored decision making [Universalism]. Conclusion: SDM can be realized by an interplay of values. The values Benevolence and Security deserve more explicit attention, and may especially increase vulnerable patients’ Self-Direction. Practice implications: This value structure enables a comparison of values underlying SDM with those of specific populations, facilitating the incorporation of patients’ values into treatment decision making. It may also inform the development of SDM measures, interventions, education programs, and HCPs when practicing.
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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.
-Chatbots are being used at an increasing rate, for instance, for simple Q&A conversations, flight reservations, online shopping and news aggregation. However, users expect to be served as effective and reliable as they were with human-based systems and are unforgiving once the system fails to understand them, engage them or show them human empathy. This problem is more prominent when the technology is used in domains such as health care, where empathy and the ability to give emotional support are most essential during interaction with the person. Empathy, however, is a unique human skill, and conversational agents such as chatbots cannot yet express empathy in nuanced ways to account for its complex nature and quality. This project focuses on designing emotionally supportive conversational agents within the mental health domain. We take a user-centered co-creation approach to focus on the mental health problems of sexual assault victims. This group is chosen specifically, because of the high rate of the sexual assault incidents and its lifetime destructive effects on the victim and the fact that although early intervention and treatment is necessary to prevent future mental health problems, these incidents largely go unreported due to the stigma attached to sexual assault. On the other hand, research shows that people feel more comfortable talking to chatbots about intimate topics since they feel no fear of judgment. We think an emotionally supportive and empathic chatbot specifically designed to encourage self-disclosure among sexual assault victims could help those who remain silent in fear of negative evaluation and empower them to process their experience better and take the necessary steps towards treatment early on.
CRISPR/Cas genome engineering unleashed a scientific revolution, but entails socio-ethical dilemmas as genetic changes might affect evolution and objections exist against genetically modified organisms. CRISPR-mediated epigenetic editing offers an alternative to reprogram gene functioning long-term, without changing the genetic sequence. Although preclinical studies indicate effective gene expression modulation, long-term effects are unpredictable. This limited understanding of epigenetics and transcription dynamics hampers straightforward applications and prevents full exploitation of epigenetic editing in biotechnological and health/medical applications.Epi-Guide-Edit will analyse existing and newly-generated screening data to predict long-term responsiveness to epigenetic editing (cancer cells, plant protoplasts). Robust rules to achieve long-term epigenetic reprogramming will be distilled based on i) responsiveness to various epigenetic effector domains targeting selected genes, ii) (epi)genetic/chromatin composition before/after editing, and iii) transcription dynamics. Sustained reprogramming will be examined in complex systems (2/3D fibroblast/immune/cancer co-cultures; tomato plants), providing insights for improving tumor/immune responses, skin care or crop breeding. The iterative optimisations of Epi-Guide-Edit rules to non-genetically reprogram eventually any gene of interest will enable exploitation of gene regulation in diverse biological models addressing major societal challenges.The optimally balanced consortium of (applied) universities, ethical and industrial experts facilitates timely socioeconomic impact. Specifically, the developed knowledge/tools will be shared with a wide-spectrum of students/teachers ensuring training of next-generation professionals. Epi-Guide-Edit will thus result in widely applicable effective epigenetic editing tools, whilst training next-generation scientists, and guiding public acceptance.
