eprintid: 10193382 rev_number: 7 eprint_status: archive userid: 699 dir: disk0/10/19/33/82 datestamp: 2024-06-13 07:59:46 lastmod: 2024-06-13 07:59:46 status_changed: 2024-06-13 07:59:46 type: article metadata_visibility: show sword_depositor: 699 creators_name: Wager, Julia creators_name: Kubek, Larissa Alice creators_name: Brenner, Maria creators_name: Calmanti, Sara creators_name: Doyle, Carmel creators_name: Lövgren, Malin creators_name: Kreicbergs, Ulrika creators_name: Kremer, Leontien creators_name: Le Moine, Philippe creators_name: Robert, Guillaume creators_name: Schuiling-Otten, Meggi creators_name: Schröder‑Bäck, Peter creators_name: Verhagen, Eduard creators_name: Zernikow, Boris title: Expert survey on coverage and characteristics of pediatric palliative care in Europe – a focus on home care ispublished: pub divisions: UCL divisions: B02 divisions: D13 divisions: G25 keywords: Palliative care, Pediatrics, Health care quality, access, and evaluation, Home care services, Europe note: This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data. abstract: Background: For children with life-limiting conditions home care is a key component of pediatric palliative care. However, poor information is available on service coverage and in particular on country-specific pediatric palliative home care characteristics. The aim of the study was therefore to describe the association between pediatric palliative care coverage and national activities and obtain detailed information on the pediatric palliative home care structure in different European countries. // Methods: Online survey with in-country experts from N = 33 European countries. // Results: Pediatric palliative home care (65.6%) represented the most pediatric palliative care units (15.6%) and the least common services. National documents constituted the most widespread national pediatric palliative care activity (59.4%) and were associated with available services. Pediatric palliative home care could be mostly accessed as a service free of charge to families (95.2%) from the time of a child's diagnosis (85.7%). In most countries, oncological and non-oncological patients were cared for in pediatric palliative home care. Only a minority of home care teams covered home-ventilated children. Pediatric palliative home care usually comprised medical care (81.0%), care coordination (71.4%), nursing care (75.0%) and social support (57.1%). Most countries had at least two professional groups working in home care teams (81.0%), mostly physicians and nurses. In many countries, pediatric palliative home care was not available in all regions and did not offer a 24 h-outreach service. // Conclusions: Pediatric palliative care provision in Europe is heterogeneous. Further work on country-specific structures is needed. date: 2022-10-17 date_type: published publisher: BMC official_url: http://dx.doi.org/10.1186/s12904-022-01078-0 oa_status: green full_text_type: pub language: eng primo: open primo_central: open_green verified: verified_manual elements_id: 2032929 doi: 10.1186/s12904-022-01078-0 medium: Electronic pii: 10.1186/s12904-022-01078-0 lyricists_name: Kreicbergs, Ulrika Charlotta lyricists_id: UCKRE58 actors_name: Kreicbergs, Ulrika Charlotta actors_id: UCKRE58 actors_role: owner funding_acknowledgements: [Projekt DEAL] full_text_status: public publication: BMC Palliative Care volume: 21 article_number: 185 pages: 10 event_location: England issn: 1472-684X citation: Wager, Julia; Kubek, Larissa Alice; Brenner, Maria; Calmanti, Sara; Doyle, Carmel; Lövgren, Malin; Kreicbergs, Ulrika; ... Zernikow, Boris; + view all <#> Wager, Julia; Kubek, Larissa Alice; Brenner, Maria; Calmanti, Sara; Doyle, Carmel; Lövgren, Malin; Kreicbergs, Ulrika; Kremer, Leontien; Le Moine, Philippe; Robert, Guillaume; Schuiling-Otten, Meggi; Schröder‑Bäck, Peter; Verhagen, Eduard; Zernikow, Boris; - view fewer <#> (2022) Expert survey on coverage and characteristics of pediatric palliative care in Europe – a focus on home care. BMC Palliative Care , 21 , Article 185. 10.1186/s12904-022-01078-0 <https://doi.org/10.1186/s12904-022-01078-0>. Green open access document_url: https://discovery.ucl.ac.uk/id/eprint/10193382/1/Expert%20survey%20on%20coverage%20and%20characteristics%20of%20pediatric%20palliative%20care%20in%20Europe%20-%20a%20focus%20on%20home%20care.pdf