Sources of Stress, Family Functioning, and Needs of Families With a Chronic Critically Ill Child: A Qualitative Study

PICU hospitalization is particularly stressful for families. When it is prolonged and the prognostic is uncertain, it can significantly and negatively affect the whole family. To date, little is known on how families with a chronic critically ill (CCI) child are affected. This national study explore...

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Autores principales:	Chantal Grandjean, Pascale Ullmann, Mark Marston, Marie-Christine Maitre, Marie-Hélène Perez, Anne-Sylvie Ramelet, The OCToPuS Consortium, Anne-Laure Lauria, Angelo Polito, Nathalie Bochaton, Daniel Trachsel, Silvia Schnidrig, Tilman Humpl, Bjarte Rogdo, Ellen Wild, Thomas Neuhaus, Sandra Stalder, Barbara Brotschi, Franziska von Arx, Anna-Barbara Schlüer, Thomas Riedel, Pascale Van Kleef
Formato:	article
Lenguaje:	EN
Publicado:	Frontiers Media S.A. 2021
Materias:	chronic disease chronic critical illness (CCI) pediatric intensive care unit family family nursing family functioning Pediatrics RJ1-570
Acceso en línea:	https://doaj.org/article/d6607cd27ecc401dac5e39c5585cfacc
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spelling	oai:doaj.org-article:d6607cd27ecc401dac5e39c5585cfacc2021-11-04T07:26:12ZSources of Stress, Family Functioning, and Needs of Families With a Chronic Critically Ill Child: A Qualitative Study2296-236010.3389/fped.2021.740598https://doaj.org/article/d6607cd27ecc401dac5e39c5585cfacc2021-11-01T00:00:00Zhttps://www.frontiersin.org/articles/10.3389/fped.2021.740598/fullhttps://doaj.org/toc/2296-2360PICU hospitalization is particularly stressful for families. When it is prolonged and the prognostic is uncertain, it can significantly and negatively affect the whole family. To date, little is known on how families with a chronic critically ill (CCI) child are affected. This national study explored the specific PICU-related sources of stress, family functioning and needs of families of CCI patients during a PICU hospitalization. This descriptive qualitative study was conducted in the eight pediatric intensive care units in Switzerland. Thirty-one families with a child meeting the CCI criteria participated in semi-structured interviews. Interviews, including mothers only (n = 12), fathers only (n = 8), or mother and father dyads (n = 11), were conducted in German, French, or English by two trained researchers/clinical nurses specialists. Interviews were recorded, transcribed verbatim, and analyzed using deductive and inductive content analyses. Five overarching themes emerged: (1) high emotional intensity, (2) PICU-related sources of stress, (3) evolving family needs, (4) multi-faceted family functioning, and (5) implemented coping strategies. Our study highlighted the importance of caring for families with CCI children. Parents reported high negative emotional responses that affect their family functioning. Families experience was highly dependent on how HCPs were able to meet the parental needs, provide emotional support, reinforce parental empowerment, and allow high quality of care coordination.Chantal GrandjeanChantal GrandjeanPascale UllmannMark MarstonMark MarstonMark MarstonMarie-Christine MaitreMarie-Hélène PerezAnne-Sylvie RameletAnne-Sylvie RameletThe OCToPuS ConsortiumAnne-Laure LauriaAngelo PolitoNathalie BochatonDaniel TrachselSilvia SchnidrigTilman HumplBjarte RogdoEllen WildThomas NeuhausSandra StalderBarbara BrotschiFranziska von ArxAnna-Barbara SchlüerThomas RiedelPascale Van KleefFrontiers Media S.A.articlechronic diseasechronic critical illness (CCI)pediatric intensive care unitfamilyfamily nursingfamily functioningPediatricsRJ1-570ENFrontiers in Pediatrics, Vol 9 (2021)
institution	DOAJ
collection	DOAJ
language	EN
topic	chronic disease chronic critical illness (CCI) pediatric intensive care unit family family nursing family functioning Pediatrics RJ1-570
spellingShingle	chronic disease chronic critical illness (CCI) pediatric intensive care unit family family nursing family functioning Pediatrics RJ1-570 Chantal Grandjean Chantal Grandjean Pascale Ullmann Mark Marston Mark Marston Mark Marston Marie-Christine Maitre Marie-Hélène Perez Anne-Sylvie Ramelet Anne-Sylvie Ramelet The OCToPuS Consortium Anne-Laure Lauria Angelo Polito Nathalie Bochaton Daniel Trachsel Silvia Schnidrig Tilman Humpl Bjarte Rogdo Ellen Wild Thomas Neuhaus Sandra Stalder Barbara Brotschi Franziska von Arx Anna-Barbara Schlüer Thomas Riedel Pascale Van Kleef Sources of Stress, Family Functioning, and Needs of Families With a Chronic Critically Ill Child: A Qualitative Study
description	PICU hospitalization is particularly stressful for families. When it is prolonged and the prognostic is uncertain, it can significantly and negatively affect the whole family. To date, little is known on how families with a chronic critically ill (CCI) child are affected. This national study explored the specific PICU-related sources of stress, family functioning and needs of families of CCI patients during a PICU hospitalization. This descriptive qualitative study was conducted in the eight pediatric intensive care units in Switzerland. Thirty-one families with a child meeting the CCI criteria participated in semi-structured interviews. Interviews, including mothers only (n = 12), fathers only (n = 8), or mother and father dyads (n = 11), were conducted in German, French, or English by two trained researchers/clinical nurses specialists. Interviews were recorded, transcribed verbatim, and analyzed using deductive and inductive content analyses. Five overarching themes emerged: (1) high emotional intensity, (2) PICU-related sources of stress, (3) evolving family needs, (4) multi-faceted family functioning, and (5) implemented coping strategies. Our study highlighted the importance of caring for families with CCI children. Parents reported high negative emotional responses that affect their family functioning. Families experience was highly dependent on how HCPs were able to meet the parental needs, provide emotional support, reinforce parental empowerment, and allow high quality of care coordination.
format	article
author	Chantal Grandjean Chantal Grandjean Pascale Ullmann Mark Marston Mark Marston Mark Marston Marie-Christine Maitre Marie-Hélène Perez Anne-Sylvie Ramelet Anne-Sylvie Ramelet The OCToPuS Consortium Anne-Laure Lauria Angelo Polito Nathalie Bochaton Daniel Trachsel Silvia Schnidrig Tilman Humpl Bjarte Rogdo Ellen Wild Thomas Neuhaus Sandra Stalder Barbara Brotschi Franziska von Arx Anna-Barbara Schlüer Thomas Riedel Pascale Van Kleef
author_facet	Chantal Grandjean Chantal Grandjean Pascale Ullmann Mark Marston Mark Marston Mark Marston Marie-Christine Maitre Marie-Hélène Perez Anne-Sylvie Ramelet Anne-Sylvie Ramelet The OCToPuS Consortium Anne-Laure Lauria Angelo Polito Nathalie Bochaton Daniel Trachsel Silvia Schnidrig Tilman Humpl Bjarte Rogdo Ellen Wild Thomas Neuhaus Sandra Stalder Barbara Brotschi Franziska von Arx Anna-Barbara Schlüer Thomas Riedel Pascale Van Kleef
author_sort	Chantal Grandjean
title	Sources of Stress, Family Functioning, and Needs of Families With a Chronic Critically Ill Child: A Qualitative Study
title_short	Sources of Stress, Family Functioning, and Needs of Families With a Chronic Critically Ill Child: A Qualitative Study
title_full	Sources of Stress, Family Functioning, and Needs of Families With a Chronic Critically Ill Child: A Qualitative Study
title_fullStr	Sources of Stress, Family Functioning, and Needs of Families With a Chronic Critically Ill Child: A Qualitative Study
title_full_unstemmed	Sources of Stress, Family Functioning, and Needs of Families With a Chronic Critically Ill Child: A Qualitative Study
title_sort	sources of stress, family functioning, and needs of families with a chronic critically ill child: a qualitative study
publisher	Frontiers Media S.A.
publishDate	2021
url	https://doaj.org/article/d6607cd27ecc401dac5e39c5585cfacc
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Sources of Stress, Family Functioning, and Needs of Families With a Chronic Critically Ill Child: A Qualitative Study

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