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.
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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
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Every healthcare professional (HCP) in the Netherlands is expected to provide palliative care based on their initial education. This requires national consensus and clarity on the quality and goals of palliative care education and accessible education opportunities nationwide. These requirements were not met in the Netherlands, posing a major obstacle to improving the organization and delivery of palliative care. Therefore, a program, Optimizing Education and Training in Palliative Care (O2PZ), was established to improve palliative care education on a national level. Objectives: The main task of the O2PZ program from 2018 to 2021 was to implement and improve palliative care education in initial education for nursing and medical professionals. The program’s ultimate goal was that every HCP be sufficiently educated to provide highquality generalist palliative care. Design: The O2PZ program consists of four projects to improve and consolidate generalist palliative care education nationwide. Methods: All projects used a participatory approach, that is, participatory development, implementation, and co-creation with stakeholders, mainly HCPs and education developers. Appreciative inquiry was used to assess, improve, and integrate existing local palliative care education initiatives. Results: (1) Establishment of an Education Framework for palliative care for all HCPs, including an interprofessional collaboration model; (2) optimization of palliative care education in the (initial) curricula of vocational education institutions and (applied) universities; (3) establishment of an online platform to disseminate materials to improve palliative care education; and (4) installment of seven regional palliative care education hubs, of which one hub was devoted to pediatric palliative care, as well as one national hub. Discussion: We discuss some lessons learned and challenges in accomplishing the goals of the O2PZ program in 2018–2021 and address how these challenges were dealt with. We maintain that co-creation with stakeholders at policy, organizational, and operational levels, as well as ongoing communication and collaboration, is essential to consolidating and implementing results. Conclusion: Over the past 4years, we have improved generalist palliative care education nationwide for all HCPs through four projects in which we collaborated closely with stakeholders. This has resulted in more attention to and implementation of palliative care in education, a national Education Framework for palliative care, including an interprofessional collaboration model, an online platform for palliative care education, and palliative care education hubs covering all regions of the Netherlands.
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Generalists in palliative care and professionals with specialized expertise, including palliative care nurses, achieve high-quality palliative care. To strengthen their role, it is essential to understand the tasks palliative care nurses perform and their position within the organizations. We aim to accomplish this understanding and explore facilitators and barriers to taking on the role as specialized nurses from both the nurses’ and managers’ perspectives. A sequential mixed-method design combined an online survey, followed up by five focus groups. Analysis involved descriptive statistics and thematic coding. A total of 234 palliative care nurses across various care settings answered the survey. They primarily provided physical care (88%), with less focus on psychological (72%), social (68%), and spiritual (68%) domains, and were consulted for fewer than half of their activities. Having no job descriptions often occurred (from 78% in home care and nursing homes to 44% in hospitals). Hospital nurses were more involved in advisory teams (56%) than those in other settings (26% −28%). Nurses showed leadership by promoting generalists’ expertise, connecting partners, serving as role models, and advocating for palliative care. Focus groups with twelve nurses and nine managers identified facilitators and barriers that palliative care nurses and their managers encounter in embedding their roles and positions. These covered: (1) distinction between generalist and specialist palliative care, (2) collaboration, (3) job descriptions, (4) leadership, (5) visibility, (6) funding and reimbursement. Palliative care nurses fulfill an essential role but experience ambiguity about their role and position. They and their managers emphasized the importance of leadership and advocating for palliative care in their organizations. Visibility, funding, reimbursement, and collaboration are facilitators and barriers to their role and position. There are notable areas for improvement, including joining a palliative care advisory team, having a job description, and finding ways to demonstrate cost-effectiveness
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Het generalist-plus-specialistische palliatieve zorgmodel wordt wereldwijd onderschreven. In Nederland zijn de competenties en het profiel van de generalistische aanbieder van palliatieve zorg beschreven op alle professionele niveaus in de verpleegkunde en geneeskunde.
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As migrant populations age, the care system is confronted with the question how to respond to care needs of an increasingly diverse population of older adults. We used qualitative intersectional analysis to examine differential preferences and experiences with care at the end of life of twenty-five patients and their relatives from Suriname, Morocco and Turkey living in The Netherlands. Our analysis focused on the question how–in light of impairment–ethnicity, religion and gender intersect to create differences in social position that shape preferences and experiences related to three main themes: place of care at the end of life; discussing prognosis, advance care, and end-of-life care; and, end-of-life decision-making. Our findings show that belonging to an ethnic or religious minority brings forth concerns about responsive care. In the nursing home, patients’ minority position and the interplay thereof with gender make it difficult for female patients to request and receive responsive care. Patients with a strong religious affiliation prefer to discuss diagnosis but not prognosis. These preferences are at interplay with factors related to socioeconomic status. The oversight of this variance hampers responsive care for patients and relatives. Preferences for discussion of medical aspects of care are subject to functional impairment and faith. Personal values and goals often remain unexpressed. Lastly, preferences regarding medical end-of-life decisions are foremost subject to religious affiliation and associated moral values. Respondents’ impairment and limited Dutch language proficiency requires their children to be involved in decision-making. Intersecting gendered care roles determine that mostly daughters are involved. Considering the interplay of aspects of social identity and their effect on social positioning, and pro-active enquiry into values, goals and preferences for end-of-life care of patients and their relatives are paramount to achieve person centred and family-oriented care responsive to the needs of diverse communities.
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Inleiding: Het totale pijn concept en het management van pijn heeft een interdisciplinaire invalshoek nodig. Naast medicamenteuze behandeling hebben patiënten de wens om meer symptoom management interventies die complementair zijn. Verpleegkundigen zijn een stabiele dagelijkse factor bij pijnmanagement en vaak de eerste professional in het signaleren van pijn. Het inzetten van nonfarmacologische verpleegkundige interventies zou kunnen bijdragen aan het verlichten van pijn.Onderzoeksvraag: Welke non-farmacologische verpleegkundige interventies zijn er voor het verlichten van pijn bij de palliatieve patiënten?Methoden: Een opgestelde zoekstrategie werd gebruikt en aangepast naar de databases: PubMed, CINAHL, PsycINFO en Embase. De zoekresultaten werden dubbelblind gescreend en de methodologische kwaliteit dubbelblind beoordeeld met de Joanna Briggs Institute Critical Appraisal Tools. Data-extractie vond plaats en de resultaten samengevat. Er werd een best-evidence synthese gebruikt waarin de methodologische kwaliteit, aantal studies met dezelfde interventies en consistentie in resultaten werden vertaald naar sterk, gematigd, gemixt of onvoldoende evidentie.Resultaten: Er werden 2385 artikelen gevonden. 22 studies zijn geselecteerd waarin verschillende nonfarmacologische verpleegkundige interventies werden gebruikt. Een aantal interventies zijn in meerder studies onderzocht: massage en virtual reality hadden de meeste evidentie voor het ondersteunen bij pijn verlichting en kunst therapie had onvoldoende bewijs. Mindful breathing gafgeen significante pijnverlichting. Alle andere interventies zijn onvoldoende onderzocht. Hypnose, progressieve relaxatie met interactieve geleide visualisaties, cognitive behavioural audiotapes, voetenbad, reflexology en muziek therapie gaven veelbelovende resultaten voor pijnverlichting en mindfulness-based stress reductie programma, aromatherapie en aromatherapie massage gaven deze resultaten niet.Conclusies: Ondanks dat niet alle studies significante veranderingen in pijnscores lieten zien kunnen non-farmacologische verpleegkundige interventies nog wel klinisch relevant zijn voor de palliatieve patiënt. De interventies kennen geen risico’s, hebben allemaal een korte-termijn effect op pijn, zijn in alle settingen van zorg in te zetten, kunnen waar gewenst ook aangeleerd worden door de patiënt of mantelzorg en door de verpleegkundige 24/7 in te zetten. Vanwege de waarde die de interventies voor de patiënt kunnen hebben zou de inzet ervan overwogen moeten worden voor het pijn management plan. Onderzoek met sterke methodologische kwaliteit naar non-farmacologische verpleegkundige interventies blijft nodig.Aanbevelingen: De interventies massage, virtual reality en kunst therapie zouden vanwege de beste evidentie een eerste optie kunnen zijn die verpleegkundigen aanbieden aan patiënten. Vanwege de klinische relevantie is het van belang naar de wens van de patiënt, het ziektebeeld en progressie van de ziekte te kijken welke non-farmacologische verpleegkundige interventies het best passend is.
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The aim of the present thesis was to contribute to the improvement of patient care communication across the integrated care setting of children with cerebral palsy. Hereto, we followed two subsequent phases: 1) obtaining a better understanding of the experienced quality of patient care communication across the integrated care setting of cerebral palsy in three Dutch care regions; and 2) investigating the feasibility and usability of an eHealth application to improve patient care communication in these care regions.
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