This dissertation describes a research project about the communication between communication vulnerable people and health care professionals in long-term care settings. Communication vulnerable people experience functional communication difficulties in particular situations, due to medical conditions. They experience difficulties expressing themselves or understanding professionals, and/or professionals experience difficulties understanding these clients. Dialogue conversations between clients and professionals in healthcare, which for example concern health-related goals, activity and participation choices, diagnostics, treatment options, and treatment evaluation, are, however, crucial for successful client-centred care and shared decision making. Dialogue conversations facilitate essential exchanges between clients and healthcare professionals, and both clients and professionals should play a significant role in the conversation. It is unknown how communication vulnerable people and their healthcare professionals experience dialogue conversations and what can be done to support successful communication in these conversations. The aim of this research is to explore how communication vulnerable clients and professionals experience their communication in dialogue conversations in long-term care and how they can best be supported in improving their communication in these conversations.
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This article describes a European project which was aimed at improving the situation of persons with psychiatric or learning disabilities with regard to social participation and citizenship. The project took place in three countries (Estonia, Hungary and the Netherlands) and four cities (Tallinn, Budapest, Amersfoort and Maastricht). The project included research and actions at the policy level, the organizational level and the practice level. At the policy level, the framework of the United Nations Convention on the Rights of Persons with Disabilities (United Nations, 2006) and the European Disability Strategy (European Commission, 2010) were used to look at national and local policies, at the reality of the lives of those with disabilities and at the support that professional services offer with regard to participation and inclusion. The project generated a number of insights, recommendations and methods by which to improve the quality of services and increase the number of opportunities for community engagement. In this article, we present some of the lessons learned from the meta-analysis. Although the circumstances in each country are quite different with regard to policy, culture and service systems, it is remarkable that people with disabilities face many of the same problems. The study shows that in all three countries, access to services could be improved. Barriers include bureaucratic procedures and a lack of services. The research identified that in every country and city there are considerable barriers regarding equal participation in the field of housing, work and leisure activities. In addition to financial barriers, there are the barriers of stigma and self-stigmatization. Marginalization keeps people in an unequal position and hinders their recovery and participation. In all countries, professionals need to develop a stronger focus on supporting the participation of their clients in public life and in the development of different roles pertaining to citizenship
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Parental involvement is a crucial force in children’s development, learning and success at school and in life [1]. Participation, defined by the World Health Organization as ‘a person’s involvement in life situations’ [2] for children means involvement in everyday activities, such as recreational, leisure, school and household activities [3]. Several authors use the term social participation emphasising the importance of engagement in social situations [4, 5]. Children’s participation in daily life is vital for healthy development, social and physical competencies, social-emotional well-being, sense of meaning and purpose in life [6]. Through participation in different social contexts, children gather the knowledge and skills needed to interact, play, work, and live with other people [4, 7, 8]. Unfortunately, research shows that children with a physical disability are at risk of lower participation in everyday activities [9]; they participate less frequently in almost all activities compared with children without physical disabilities [10, 11], have fewer friends and often feel socially isolated [12-14]. Parents, in particular, positively influence the participation of their children with a physical disability at school, at home and in the community [15]. They undertake many actions to improve their child’s participation in daily life [15, 16]. However, little information is available about what parents of children with a physical disability do to enable their child’s participation, what they come across and what kind of needs they have. The overall aim of this thesis was to investigate parents’ actions, challenges, and needs while enhancing the participation of their school-aged child with a physical disability. In order to achieve this aim, two steps have been made. In the first step, the literature has been examined to explore the topic of this thesis (actions, challenges and needs) and to clarify definitions for the concepts of participation and social participation. Second, for the purposes of giving breadth and depth of understanding of the topic of this thesis a mixed methods approach using three different empirical research methods [17-19], was applied to gather information from parents regarding their actions, challenges and needs.
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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.
Achtergrond. Zeespiegelstijging vormt wereldwijd een bedreiging voor laaggelegen kustgebieden. Na 2050 treedt mogelijk een versnelling op, maar onduidelijk is wanneer deze versnelling optreedt en hoe groot de versnelling zal zijn. Het landelijk Kennisprogramma Zeespiegelstijging (KPZ-2020-2026) tracht hierin meer inzicht te krijgen en eerste stappen te zetten in de ontwikkeling van alternatieve waterveiligheidsstrategieën. Vraagarticulatie. In 2020 is een zorgvuldig proces gevolgd voor de vraagarticulatie waaraan onderzoekers, Zeeuwse overheden en enkele maatschappelijke partners hebben deelgenomen. Het proces heeft geresulteerd in de (hoofd)praktijkvraag: “Hoe kan in de ruimtelijke inrichting van land-waterovergangen geanticipeerd worden op verschillende scenario’s voor (versnelde) zeespiegelstijging?” Hoofdvraag en doelstelling. Dit voorstel benadert de ontwikkeling van waterveiligheidsstrategieën als een ruimtelijk vraagstuk waarbij we onderzoek doen naar het verbinden van gebiedsopgaven, toepassing van dijkconcepten gebaseerd op Bouwen met Natuur (BmN), en het ontwikkelen van maatschappelijk draagvlak voor ingrijpende landschapsveranderingen, aan de hand van vier onderzoeksvragen die zich richten op: • Ruimtelijke kwaliteit landschap en samenhang met draagvlak voor ruimtelijke strategieën; • Fysische en ecologische randvoorwaarden voor BmN-oplossingen en inpassing in ruimtelijke strategieën; • Drijvende krachten en barrières voor draagvlak via participatieve ontwerpprocessen; • Richtlijnen voor ontwikkeling van ruimtelijke strategieën, zowel voor het ruimtelijk ontwerp als het ontwerpproces. Methoden. Het onderzoek wordt uitgewerkt voor de Westerschelde waarbij wordt geschakeld tussen twee ruimtelijke schaalniveaus: de Westerschelde (bekken-niveau) en living labs (op drie locaties). Een mix van methoden wordt toegepast waaronder surveys (Public Participation GIS), interviews, GIS-analyses, modellering van BmN meegroei-oplossingen (Delft3D-FM), en evaluatie van het ‘sociaal leerproces’ in research-through-design ontwerpateliers. Resultaat. Het onderzoek resulteert in een methodiek/werkwijze die vanaf 2026 (na afloop van huidige Kennisprogramma Zeespiegelstijging) kan worden toegepast door publieke professionals in (bedijkte) kustgebieden. Consortium. HZ University of Applied Sciences (penvoerder), Wageningen University, NIOZ, Natuurmonumenten, Provincie Zeeland, Rijkswaterstaat Zee en Delta, Waterschap Scheldestromen, Gemeenten Borsele, Hulst, Kapelle, Reimerswaal, Vlissingen. In de livings labs worden lokale stakeholders betrokken.
Top-up kan Hogeschool Rotterdam en haar partner Erasmus MC ondersteunen bij het verder verspreiden en consolideren van ons succesvolle onderzoeksprogramma SPIL (Selfmanagement & Participation Innovation Lab). Dit RAAK-Pro programma (2011-2015) heeft ons Kenniscentrum (inter)nationaal op de kaart gezet als dé kennispartner voor de zorg voor jeugd met chronische aandoeningen in hun transitie naar volwassenheid – en naar de zorg voor volwassenen. SPIL was genomineerd voor de RAAK Award voor praktijkgericht onderzoek 2015. SPIL was gericht op het bevorderen en ondersteunen van zelfmanagement en participatie bij jongeren met chronische aandoeningen met als doel dat de jongere op eigen benen staat en de aandoening kan inpassen in het dagelijks leven, zelf de regie kan voeren en optimaal kan participeren in de samenleving (in het bijzonder in werk). Hbo-zorgprofessionals worden uitgedaagd om jongeren bij deze transities te ondersteunen. SPIL werd uitgevoerd in twee proeftuinen: de ene gericht op onderzoek en innovaties binnen het kinderziekenhuis Erasmus MC–Sophia (jongeren met somatische chronische aandoeningen), de andere op Erasmus MC–Revalidatiegeneeskunde (jongeren met fysieke beperkingen). Het onderzoek in de proeftuinen was gericht op theorie- en instrumentvorming, naast de evaluatie van nieuwe zorgconcepten (zoals transitiepoli’s en TraJect: ‘Aan het werk?!’ om arbeidsparticipatie te stimuleren). Deze projecten leverden veel wetenschappelijke publicaties en meerdere proefschriften op; kennis die wordt gebruikt om het onderwijs op onze gezondheidszorgopleidingen te verrijken. Enkele onderdelen van SPIL hebben ondertussen een vervolg gekregen (o.a. de effectstudie naar Transitiepoli’s wordt nu herhaald in de diabeteszorg en gecombineerd met een nationaal verbeterprogramma). Maar er is ook nog een en ander blijven liggen. De dataverzameling voor de twee effectstudies in beide proeftuinen is pas recent afgerond: daar moeten nog wetenschappelijke publicaties over geschreven worden (Activiteit 1 - ONDERZOEK). Met een Top Up subsidie kunnen we de impact van SPIL op het ONDERWIJS verder vergroten. We ontwikkelen een lespakket over de interventie TraJect:‘Aan het werk?! en implementeren dit in ons eigen (minor)onderwijs, maar ook bij reguliere opleidingen (initieel / post-initieel) (Activiteit 2). Onze ambities gaan nog verder: landelijke verspreiding van resultaten en brede implementatie van passende interventies is ons doel. Om doorwerking in de BEROEPSPRAKTIJK te vergroten willen we de inhoud van de pagina’s voor professionals op onze website www.opeigenbenen.nu aanpassen (Activiteit 3). Deze website ondergaat momenteel een totale make-over dankzij een kleine externe subsidie plus een forse eigen bijdrage van HR, waarbij de nadruk ligt op aanpassing van de jongerenpagina's en de vormgeving. Er zijn echter geen middelen meer om de Transitie Toolkit voor professionals te herzien, terwijl deze veel gebruikt wordt (>50.000 unieke bezoekers per jaar) en bruikbaar is voor de beroepspraktijk. Ook in het buitenland bestaat interesse voor deze Toolkit. Verder zoeken we middelen om informatiemateriaal voor jongeren te ontwikkelen en te drukken zodat zorgverleners jongeren en ouders attent kunnen maken op de nieuwe website (Activiteit 4). Zorgverleners hebben aangegeven hier behoefte aan te hebben. Door het lopende project Betere Transitie bij Diabetes waar we het SPIL-onderzoek vervolgen in 20 ziekenhuizen, is dit ook extra actueel geworden. Ook hiervoor zijn geen middelen beschikbaar.
