Browsing by Author "Larkin, Philip"
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- Consensus definition of advance care planning in dementia: a 33-country Delphi studyPublication . European Association for Palliative Care; Steen, Jenny T. van der; Nakanishi, Miharu; Van den Block, Lieve; Di Giulio, Paola; Gonella, Silvia; in der Schmitten, Jürgen; Sudore, Rebecca; Harrison Dening, Karen; Parker, Deborah; Mimica, Ninoslav; Holmerova, Iva; Larkin, Philip; Pereira, Sandra Martins; Rietjens, Judith A.C.; Korfage, IdaINTRODUCTION: Existing advance care planning (ACP) definitional frameworks apply to individuals with decision-making capacity. We aimed to conceptualize ACP for dementia in terms of its definition and issues that deserve particular attention. METHODS: Delphi study with phases: (A) adaptation of a generic ACP framework by a task force of the European Association for Palliative Care (EAPC); (B) four online surveys by 107 experts from 33 countries, September 2021 to June 2022; (C) approval by the EAPC board. RESULTS: ACP in dementia was defined as a communication process adapted to the person's capacity, which includes, and is continued with, family if available. We identified pragmatic boundaries regarding participation and time (i.e., current or end-of-life care). Three interrelated issues that deserve particular attention were capacity, family, and engagement and communication. DISCUSSION: A communication and relationship-centered definitional framework of ACP in dementia evolved through international consensus supporting inclusiveness of persons with dementia and their family.
- Cultivating excellence in palliative care education and training: a network and thematic deep dive into CODE-YAA@PC-EDU initiativesPublication . Paal, Piret; Mason, Stephen; Larkin, Philip; Hökkä, Minna; Economos, Guillaume; Pawłowski, Leszek; Pereira, Sandra Martins; Hernández-Marrero, Pablo; Goldzweig, GilBackground: In this study, we employed a collaborative and participatory approach, underpinned by pragmatic methodology, to explore and elucidate the interconnections within the research network of the COllaboratively DEveloped culturallY Appropriate and inclusive Assessment tool for Palliative Care EDUcation the European Cooperation in Science and Technology Action. We demonstrate how the analysis of the publicly available data, as well as the joint publication history of the core group members of this action can accelerate understanding of collaborative dynamics, patterns of collaboration and knowledge exchange within the group. Methods: We used VOSviewer software to systematically map joint publication and further leveraged InfraNodus software to visualize and analyze the thematic content of our project proposal. Results: The social network analysis revealed pivotal connections, fostering a robust research ecosystem that needs to expand geographically, scientifically, and linguistically. The application of InfraNodus software informs our pursuit of culturally appropriate quality assessment tools for palliative care education, which are poorly developed and understood so far. Conclusions: The crux of our research lies in gaining a deeper understanding of the relationships between researchers. This insight is pivotal to enhancing the effectiveness and inclusivity of our work in developing culturally appropriate assessment tools for palliative care education as well as monitoring the global impact of this European Union funded project.
- Nursing education on palliative care across Europe: results and recommendations from the EAPC taskforce on preparation for practice in palliative care nursing across the EU based on an online-survey and country reportsPublication . Pereira, Sandra Martins; Hernández-Marrero, Pablo; Pasman, H.Roeline; Capelas, Manuel Luís; Larkin, Philip; Francke, Anneke LBackground: Nurses are the largest regulated group of healthcare professionals involved in palliative care. In 2004, a taskforce of the European Association for Palliative Care (EAPC) launched the ‘Guide for development of palliative nurse education in Europe’ (hereinafter, the EAPC 2004 Guide). No systematic evaluation of its impact in the development of palliative care education was undertaken. Aims: To describe current undergraduate and postgraduate nursing education across Europe; to identify the roles that nurses with different palliative care educational levels have in palliative care; and to assess the uptake of the EAPC 2004 Guide in the development of palliative care nursing in Europe. Design: Descriptive research involving an online survey among nursing experts, and the consultation of national representatives. Setting/participants: A total of 135 nurses (52% response rate) from 25 countries completed the online survey; representatives from 16 countries were consulted. Results: In 14 (56%) countries, palliative care was not identified as a mandatory subject within undergraduate nursing education. The EAPC 2004 Guide is widely known and was/is being used in many countries to promote palliative care nursing education. Large variations were found across and within country responses. Conclusions: Palliative care nursing education varies largely in Europe. The wide awareness and use of the EAPC 2004 Guide show how policy measures can influence the development of palliative care education. Recommendations are built and focus on both fostering the use of this guide and implementing policy measures to ensure that palliative care nursing is recognised and certified as a specialty in all European countries.
- Optimizing advance care planning in dementia: recommendations from a 33-country Delphi studyPublication . European Association for Palliative Care (EAPC); Steen, Jenny T. van der; Block, Lieve Van den; Nakanishi, Miharu; Dening, Karen Harrison; Parker, Deborah; Larkin, Philip; Giulio, Paola Di; Schmitten, Jürgen in der; Sudore, Rebecca L.; Mimica, Ninoslav; Holmerova, Iva; Pereira, Sandra Martins; Korfage, Ida J.Context: Advance care planning (ACP) is relevant yet challenging with cognitive decline. Objective: To provide evidence and consensus-based clinical recommendations for how to conduct ACP in dementia. Methods: International Delphi study conducted by the European Association for Palliative Care ‘ACP in dementia’ taskforce with four online surveys (September 2021-June 2022). A panel of 107 experts from 33 countries and seven individuals with dementia contributed. The recommendations specific for dementia were initially based on two earlier Delphi studies and literature searches addressing guidance including the right timing and how to personalize ACP. We used conservative preregistered criteria for consensus. Results: Thirty constitutive elements of ACP were identified (e.g., ‘assess understanding of ACP’). Only five were deemed ‘optional.’ The panel estimated a median of four conversations could address elements to be addressed at least once. Recommendations included to assume capacity as a principle, conscious of the need to explore its fluctuation, to encourage engaging and playing active roles, and to establish connection and inform and prepare family. There was a consensus to offer ACP around dementia diagnosis, to raise end-of-life issues later, and to personalize ACP with flexibility, providing of information and exploring understanding. The advice of the persons with dementia pointed to a wish for a well-coordinated holistic approach. Conclusion: Consensus was reached, including in areas of ambiguity, to guide ACP in dementia. ACP should be embedded in a nonprescriptive, individualized approach that involves both the person with dementia and their families. Future studies may evaluate trade-offs between optimal ACP and feasible implementation.