Availability and Quality of Grief and Bereavement Care in Pediatric Intensive Care Units Around the World, Opportunities for Improvement

Pediatric Intensive Care Units (PICUs) provide multidisciplinary care to critically ill children and their families. Grief is present throughout the trajectory of illness and can peak around the time of death or non-death losses. The objective of this study was to assess how PICUs around the world i...

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Autores principales:	Michelle Grunauer, Caley Mikesell, Gabriela Bustamante, Danielle Aronowitz, Kevin Zambrano, Andrea P. Icaza-Freire, Antonio W. D. Gavilanes, Rafael Barrera, the PICU-MIC Research Group, Jorge López González, Jesús López-Herce, Emanuele Rossetti, Chiusolo Fabrizio, Oliver Karam, Marie Saint-Faust, Paolo Biban, Silvia Carlassara, Bettina von Dessauer, Nadia Ordenes, Fabiola Figueroa Urízar, Adriana Wegner A, Michael Canarie, Kathryn Miller, José Irazuzta, Daniel Tawfik, Elizabeth W. Tucker, Nicole Shilkofski, Wang Wenchao, Zhang Yuxia, Lucy Lum Chai See, Sister Priscilla, Recep Tekin, Fesih Aktar, Duygu Sönmez Düzkaya, Oguz Dursun, Ebru Atike Ongun, Resul Yilmaz, Dincer Yildizdas, Hakan Tekgüç, Vitaliy Sazonov, Timur Tsoy, Askhat Saparov, Elizaveta Kalmbakh, Ernesto Quiñones, Luis Eguiguren, Killen Briones, Yaneth Tovilla, Sandra Tania Ventura Gómez, Silvio Fabio Torres, Paul Cobarrubias, Dmytro Dmytriiev, Alejandro Martínez, Gustavo Guzaman, Rudy Sanabria, Ravikumar Krupanandan, Bala Ramachandran, Nirmal Choraria, Jignesh Patel, Puneet A Pooni, Karambir Singh Gill, John Adabie Appiah, Tigist Bacha Heye, Rahel Argaw, Asrat Demtse, Israel Abebe Admasu
Formato:	article
Lenguaje:	EN
Publicado:	Frontiers Media S.A. 2021
Materias:	grief bereavement pediatric palliative care pediatric critical care end of life Pediatrics RJ1-570
Acceso en línea:	https://doaj.org/article/9c1d2ff53c344a9fbe97b96b766d6ae9
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id	oai:doaj.org-article:9c1d2ff53c344a9fbe97b96b766d6ae9
record_format	dspace
institution	DOAJ
collection	DOAJ
language	EN
topic	grief bereavement pediatric palliative care pediatric critical care end of life Pediatrics RJ1-570
spellingShingle	grief bereavement pediatric palliative care pediatric critical care end of life Pediatrics RJ1-570 Michelle Grunauer Michelle Grunauer Caley Mikesell Gabriela Bustamante Danielle Aronowitz Kevin Zambrano Andrea P. Icaza-Freire Antonio W. D. Gavilanes Rafael Barrera the PICU-MIC Research Group Jorge López González Jesús López-Herce Emanuele Rossetti Chiusolo Fabrizio Oliver Karam Marie Saint-Faust Paolo Biban Silvia Carlassara Bettina von Dessauer Nadia Ordenes Fabiola Figueroa Urízar Adriana Wegner A Michael Canarie Kathryn Miller José Irazuzta Daniel Tawfik Elizabeth W. Tucker Nicole Shilkofski Wang Wenchao Zhang Yuxia Lucy Lum Chai See Sister Priscilla Recep Tekin Fesih Aktar Duygu Sönmez Düzkaya Oguz Dursun Ebru Atike Ongun Resul Yilmaz Dincer Yildizdas Hakan Tekgüç Vitaliy Sazonov Timur Tsoy Vitaliy Sazonov Askhat Saparov Vitaliy Sazonov Elizaveta Kalmbakh Michelle Grunauer Ernesto Quiñones Luis Eguiguren Killen Briones Yaneth Tovilla Sandra Tania Ventura Gómez Silvio Fabio Torres Paul Cobarrubias Dmytro Dmytriiev Alejandro Martínez Gustavo Guzaman Rudy Sanabria Ravikumar Krupanandan Bala Ramachandran Nirmal Choraria Jignesh Patel Puneet A Pooni Karambir Singh Gill John Adabie Appiah Tigist Bacha Heye Rahel Argaw Asrat Demtse Israel Abebe Admasu Availability and Quality of Grief and Bereavement Care in Pediatric Intensive Care Units Around the World, Opportunities for Improvement
description	Pediatric Intensive Care Units (PICUs) provide multidisciplinary care to critically ill children and their families. Grief is present throughout the trajectory of illness and can peak around the time of death or non-death losses. The objective of this study was to assess how PICUs around the world implement grief and bereavement care (GBC) as part of an integrated model of care. This is a multicenter cross-sectional, prospective survey study. Questionnaires with multiple-choice and open-ended questions focusing on unit infrastructure, personnel, policies, limited patient data, and practices related to GBC for families and health care professionals (HCPs) were completed by on-site researchers, who were HCPs on the direct care of patients. PICU fulfillment of GBC goals was evaluated using a custom scoring based on indicators developed by the Initiative for Pediatric Palliative Care (IPPC). We compared average total and individual items fulfillment scores according to the respective country's World Bank income. Patient characteristics and details of unit infrastructure were also evaluated as potential predictors of total GBC fulfillment scores. Statistical analysis included multilevel generalized linear models (GLM) with a Gaussian distribution adjusted by child age/gender and clustering by center, using high income countries (HICs) as the comparative reference. Additionally, we applied principals of content analysis to analyze and summarize open-ended answers to contextualize qualitative data. The study included 34 PICUs from 18 countries: high-income countries (HICs): 32.4%, upper middle-income countries (UMICs): 44.1%, low middle-income and low-income countries (LMI/LICs): 23.5%. All groups reported some compliance with GBC goals; no group reported perfect fulfillment. We found statistically significant differences in GBC fulfillment scores between HICs and UMICs (specifically, HCP grief support), and between HICs and LMICs (specifically, family grief support and HCP grief support). PICUs world-wide provide some GBC, independent of income, but barriers include lack of financial support, time, and training, overall unit culture, presence of a palliative care consultation service, and varying cultural perceptions of child death. Disparities in GBC for families and HCPs exist and were related to the native countries' income level. Identifying barriers to support families and HCPs, can lead to opportunities of improving GBC in PICUs world-wide.
format	article
author	Michelle Grunauer Michelle Grunauer Caley Mikesell Gabriela Bustamante Danielle Aronowitz Kevin Zambrano Andrea P. Icaza-Freire Antonio W. D. Gavilanes Rafael Barrera the PICU-MIC Research Group Jorge López González Jesús López-Herce Emanuele Rossetti Chiusolo Fabrizio Oliver Karam Marie Saint-Faust Paolo Biban Silvia Carlassara Bettina von Dessauer Nadia Ordenes Fabiola Figueroa Urízar Adriana Wegner A Michael Canarie Kathryn Miller José Irazuzta Daniel Tawfik Elizabeth W. Tucker Nicole Shilkofski Wang Wenchao Zhang Yuxia Lucy Lum Chai See Sister Priscilla Recep Tekin Fesih Aktar Duygu Sönmez Düzkaya Oguz Dursun Ebru Atike Ongun Resul Yilmaz Dincer Yildizdas Hakan Tekgüç Vitaliy Sazonov Timur Tsoy Vitaliy Sazonov Askhat Saparov Vitaliy Sazonov Elizaveta Kalmbakh Michelle Grunauer Ernesto Quiñones Luis Eguiguren Killen Briones Yaneth Tovilla Sandra Tania Ventura Gómez Silvio Fabio Torres Paul Cobarrubias Dmytro Dmytriiev Alejandro Martínez Gustavo Guzaman Rudy Sanabria Ravikumar Krupanandan Bala Ramachandran Nirmal Choraria Jignesh Patel Puneet A Pooni Karambir Singh Gill John Adabie Appiah Tigist Bacha Heye Rahel Argaw Asrat Demtse Israel Abebe Admasu
author_facet	Michelle Grunauer Michelle Grunauer Caley Mikesell Gabriela Bustamante Danielle Aronowitz Kevin Zambrano Andrea P. Icaza-Freire Antonio W. D. Gavilanes Rafael Barrera the PICU-MIC Research Group Jorge López González Jesús López-Herce Emanuele Rossetti Chiusolo Fabrizio Oliver Karam Marie Saint-Faust Paolo Biban Silvia Carlassara Bettina von Dessauer Nadia Ordenes Fabiola Figueroa Urízar Adriana Wegner A Michael Canarie Kathryn Miller José Irazuzta Daniel Tawfik Elizabeth W. Tucker Nicole Shilkofski Wang Wenchao Zhang Yuxia Lucy Lum Chai See Sister Priscilla Recep Tekin Fesih Aktar Duygu Sönmez Düzkaya Oguz Dursun Ebru Atike Ongun Resul Yilmaz Dincer Yildizdas Hakan Tekgüç Vitaliy Sazonov Timur Tsoy Vitaliy Sazonov Askhat Saparov Vitaliy Sazonov Elizaveta Kalmbakh Michelle Grunauer Ernesto Quiñones Luis Eguiguren Killen Briones Yaneth Tovilla Sandra Tania Ventura Gómez Silvio Fabio Torres Paul Cobarrubias Dmytro Dmytriiev Alejandro Martínez Gustavo Guzaman Rudy Sanabria Ravikumar Krupanandan Bala Ramachandran Nirmal Choraria Jignesh Patel Puneet A Pooni Karambir Singh Gill John Adabie Appiah Tigist Bacha Heye Rahel Argaw Asrat Demtse Israel Abebe Admasu
author_sort	Michelle Grunauer
title	Availability and Quality of Grief and Bereavement Care in Pediatric Intensive Care Units Around the World, Opportunities for Improvement
title_short	Availability and Quality of Grief and Bereavement Care in Pediatric Intensive Care Units Around the World, Opportunities for Improvement
title_full	Availability and Quality of Grief and Bereavement Care in Pediatric Intensive Care Units Around the World, Opportunities for Improvement
title_fullStr	Availability and Quality of Grief and Bereavement Care in Pediatric Intensive Care Units Around the World, Opportunities for Improvement
title_full_unstemmed	Availability and Quality of Grief and Bereavement Care in Pediatric Intensive Care Units Around the World, Opportunities for Improvement
title_sort	availability and quality of grief and bereavement care in pediatric intensive care units around the world, opportunities for improvement
publisher	Frontiers Media S.A.
publishDate	2021
url	https://doaj.org/article/9c1d2ff53c344a9fbe97b96b766d6ae9
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spelling	oai:doaj.org-article:9c1d2ff53c344a9fbe97b96b766d6ae92021-11-15T06:57:41ZAvailability and Quality of Grief and Bereavement Care in Pediatric Intensive Care Units Around the World, Opportunities for Improvement2296-236010.3389/fped.2021.742916https://doaj.org/article/9c1d2ff53c344a9fbe97b96b766d6ae92021-11-01T00:00:00Zhttps://www.frontiersin.org/articles/10.3389/fped.2021.742916/fullhttps://doaj.org/toc/2296-2360Pediatric Intensive Care Units (PICUs) provide multidisciplinary care to critically ill children and their families. Grief is present throughout the trajectory of illness and can peak around the time of death or non-death losses. The objective of this study was to assess how PICUs around the world implement grief and bereavement care (GBC) as part of an integrated model of care. This is a multicenter cross-sectional, prospective survey study. Questionnaires with multiple-choice and open-ended questions focusing on unit infrastructure, personnel, policies, limited patient data, and practices related to GBC for families and health care professionals (HCPs) were completed by on-site researchers, who were HCPs on the direct care of patients. PICU fulfillment of GBC goals was evaluated using a custom scoring based on indicators developed by the Initiative for Pediatric Palliative Care (IPPC). We compared average total and individual items fulfillment scores according to the respective country's World Bank income. Patient characteristics and details of unit infrastructure were also evaluated as potential predictors of total GBC fulfillment scores. Statistical analysis included multilevel generalized linear models (GLM) with a Gaussian distribution adjusted by child age/gender and clustering by center, using high income countries (HICs) as the comparative reference. Additionally, we applied principals of content analysis to analyze and summarize open-ended answers to contextualize qualitative data. The study included 34 PICUs from 18 countries: high-income countries (HICs): 32.4%, upper middle-income countries (UMICs): 44.1%, low middle-income and low-income countries (LMI/LICs): 23.5%. All groups reported some compliance with GBC goals; no group reported perfect fulfillment. We found statistically significant differences in GBC fulfillment scores between HICs and UMICs (specifically, HCP grief support), and between HICs and LMICs (specifically, family grief support and HCP grief support). PICUs world-wide provide some GBC, independent of income, but barriers include lack of financial support, time, and training, overall unit culture, presence of a palliative care consultation service, and varying cultural perceptions of child death. Disparities in GBC for families and HCPs exist and were related to the native countries' income level. Identifying barriers to support families and HCPs, can lead to opportunities of improving GBC in PICUs world-wide.Michelle GrunauerMichelle GrunauerCaley MikesellGabriela BustamanteDanielle AronowitzKevin ZambranoAndrea P. Icaza-FreireAntonio W. D. GavilanesRafael Barrerathe PICU-MIC Research GroupJorge López GonzálezJesús López-HerceEmanuele RossettiChiusolo FabrizioOliver KaramMarie Saint-FaustPaolo BibanSilvia CarlassaraBettina von DessauerNadia OrdenesFabiola Figueroa UrízarAdriana Wegner AMichael CanarieKathryn MillerJosé IrazuztaDaniel TawfikElizabeth W. TuckerNicole ShilkofskiWang WenchaoZhang YuxiaLucy Lum Chai SeeSister PriscillaRecep TekinFesih AktarDuygu Sönmez DüzkayaOguz DursunEbru Atike OngunResul YilmazDincer YildizdasHakan TekgüçVitaliy SazonovTimur TsoyVitaliy SazonovAskhat SaparovVitaliy SazonovElizaveta KalmbakhMichelle GrunauerErnesto QuiñonesLuis EguigurenKillen BrionesYaneth TovillaSandra Tania Ventura GómezSilvio Fabio TorresPaul CobarrubiasDmytro DmytriievAlejandro MartínezGustavo GuzamanRudy SanabriaRavikumar KrupanandanBala RamachandranNirmal ChorariaJignesh PatelPuneet A PooniKarambir Singh GillJohn Adabie AppiahTigist Bacha HeyeRahel ArgawAsrat DemtseIsrael Abebe AdmasuFrontiers Media S.A.articlegriefbereavementpediatric palliative carepediatric critical careend of lifePediatricsRJ1-570ENFrontiers in Pediatrics, Vol 9 (2021)

Availability and Quality of Grief and Bereavement Care in Pediatric Intensive Care Units Around the World, Opportunities for Improvement

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