Abstract Background: The generalist-plus-specialist palliative care model is endorsed worldwide. In the Netherlands, the competencies and profile of the generalist provider of palliative care has been described on all professional levels in nursing and medicine. However, there is no clear description of what specialized expertise in palliative care entails, whereas this is important in order for generalists to know who they can consult in complex palliative care situations and for timely referral of patients to palliative care specialists. Objective: To gain insight in the roles and competencies attributed to palliative care specialists as opposed to generalists. Methods: A scoping review was completed based on PRISMA-ScR guidelines to explore the international literature on the role and competence description of specialist and expert care professionals in palliative care. Databases Embase.com, Medline (Ovid), CINAHL (Ebsco) and Web of Science Core Collection were consulted. The thirty-nine included articles were independently screened, reviewed and charted. Thematic codes were attached based on two main outcomes roles and competencies. Results: Five roles were identified for the palliative care specialist: care provider, care consultant, educator, researcher and advocate. Leadership qualities are found to be pivotal for every role. The roles were further specified with competencies that emerged from the analysis. The title, roles and competencies attributed to the palliative care specialist can mostly be applied to both medical and nursing professionals. Discussion: The roles and competencies derived from this scoping review correspond well with the seven fields of competence for medical/nursing professionals in health care of the CanMEDS guide. A specialist is not only distinguished from a generalist on patient-related care activities but also on an encompassing level. Clarity on what it entails to be a specialist is important for improving education and training for specialists. Conclusion: This scoping review adds to our understanding of what roles and competencies define the palliative care specialist. This is important to strengthen the position of the specialist and their added value to generalists in a generalist-plus-specialist model
Abstract Background In the Netherlands, palliative care is provided by generalist healthcare professionals (HCPs) if possible and by palliative care specialists if necessary. However, it still needs to be clarifed what specialist expertise entails, what specialized care consists of, and which training or work experience is needed to become a palliative care special‑ist. In addition to generalists and specialists, ‘experts’ in palliative care are recognized within the nursing and medical professions, but it is unclear how these three roles relate. This study aims to explore how HCPs working in palliative care describe themselves in terms of generalist, specialist, and expert and how this self-description is related to their work experience and education. Methods A cross-sectional open online survey with both pre-structured and open-ended questions among HCPs who provide palliative care. Analyses were done using descriptive statistics and by deductive thematic coding of open-ended questions. Results Eight hundred ffty-four HCPs flled out the survey; 74% received additional training, and 79% had more than fve years of working experience in palliative care. Based on working experience, 17% describe themselves as a generalist, 34% as a specialist, and 44% as an expert. Almost three out of four HCPs attributed their level of expertise on both their education and their working experience. Self-described specialists/experts had more working experience in palliative care, often had additional training, attended to more patients with palliative care needs, and were more often physicians as compared to generalists. A deductive analysis of the open questions revealed the similarities and dis‑ tinctions between the roles of a specialist and an expert. Seventy-six percent of the respondents mentioned the impor‑tance of having both specialists and experts and wished more clarity about what defnes a specialist or an expert, how to become one, and when you need them. In practice, both roles were used interchangeably. Competencies for the specialist/expert role consist of consulting, leadership, and understanding the importance of collaboration. Conclusions Although the grounds on which HCPs describe themselves as generalist, specialist, or experts difer, HCPs who describe themselves as specialists or experts mostly do so based on both their post-graduate education and their work experience. HCPs fnd it important to have specialists and experts in palliative care in addition to gen‑eralists and indicate more clarity about (the requirements for) these three roles is needed.
Background and objective Public involvement in palliative care is challenging and difficult, because people in need of palliative care are often not capable of speaking up for themselves. Patient representatives advocate for their common interests. The aim of our study was to examine in depth the current practice of public involvement in palliative care. Setting and sample The study was conducted in the province of Limburg in the Netherlands, with six palliative care networks. Study participants were 16 patient representatives and 12 professionals. Method This study had a descriptive design using qualitative methods: 18 in-depth interviews and three focus groups were conducted. The critical incident technique was used. The data were analysed using an analytical framework based on Arnstein’s involvement classification and the process of decision making. Impact categories as well as facilitators and barriers were analysed using content analysis. Findings and conclusion The perceived impact of public involvement in palliative care in terms of citizen control and partnership is greatest with regard to quality of care, information development and dissemination, and in terms of policymaking with regard to the preparation and implementation phases of decision making. The main difference in perceived impact between patient representatives and professionals relates to the tension between operational and strategic involvement. Patient representatives experienced more impact regarding short-term solutions to practical problems, while professionals perceived great benefits in long-term, strategic processes. Improving public involvement in palliative care requires positive attitudes, open communication, sufficient resources and long-term support, to build a solid basis for pursuing meaningful involvement in the entire decision-making process.
MULTIFILE
Observationele studie
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.
Dit onderzoek richt zich op het verbeteren van kwaliteit van leven in de palliatieve levensfase van mensen met kanker. Het onderzoeksvoorstel ABL-PC heeft als doel een verkenning van een interventie voor deze doelgroep. Uiteindelijk kan de inzet hiervan leiden tot vergroting van kennis van persoonlijke behoeftes en vragen van deze doelgroep en draagt zo bij aan verbetering van kwaliteit van de palliatieve zorg. MOTIEF: Er komt steeds meer aandacht voor het belang van de rol van zingeving als onderdeel van kwaliteit van de zorg (Huber et al, 2016; ZonMW, 2016), en ook in de zorg in de palliatieve levensfase (Medische Oncologie, nr 1., 2019). Er zijn richtlijnen ter verbetering van de palliatieve zorg (Kwaliteitskader palliatieve zorg Nederland, IKNL/Palliactief, 2017, O2PZ 2019) en er bestaat een overzicht van instrumenten voor zorgverleners (Goede Voorbeelden, Verbeterprogramma ZonMw 2016). Er ontbreken echter interventies rondom zingeving voor zorgvragers die praktisch zijn georiënteerd en theoretisch en empirisch zijn onderbouwd. RESULTATEN: 1) Een multidisciplinair netwerk vanuit de praktijk, kunsten, de medische en psychologische wetenschap voor het ontwikkelen van een innovatieve interventie, 2) Een opzet voor een praktische interventie voor zingeving vanuit persoonlijke vragen, 3) Een wetenschappelijk artikel over dit onderzoek 4) Inrichting van een grootschalig vervolgonderzoek. INHOUD: Het onderzoek is opgebouwd als een iteratief proces waarbij onderzoekers samen met de praktijk, een bestaande kunstkijk methode Art-Based Learning (ABL) (Lutters, 2012), door- ontwikkelen tot interventie voor de palliatieve zorg: Art-Based Learning-Palliative Care (ABL-PC). Deze interventie genereert door het aandachtig en op systematische wijze kijken naar kunst, nieuwe mentale ervaringen en bewustzijn, vanuit zingevingsvragen bij de doelgroep. PARTNERS: In dit ontwerpgericht onderzoek werken samen: Amsterdam UMC (AUMC/VUmc), de Nederlandse Federatie van Kankerpatiënten organisaties (NFK), ArtEZ, Hogeschool voor de Kunsten (Lectoraat Kunst- en Cultuur Educatie), Universiteit Twente (Narratieve Psychologie), Museum Jan Cunen, Amsterdam Museum.
