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Children’s and Parents’ Conceptualization of Quality of Life in Children With Brain Tumors: A Meta-Ethnographic Exploration

The concept of quality of life (QoL) is used in consultations to plan the care and treatment of children and young people (CYP) with brain tumors (BTs). The way in which CYP, their parents, and their health care professionals (HCP) each understand the term has not been adequately investigated. This...

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Autores principales: Beecham, Emma, Langner, Richard, Hargrave, Darren, Bluebond-Langner, Myra
Formato: Online Artículo Texto
Lenguaje:English
Publicado: SAGE Publications 2018
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6293456/
https://www.ncbi.nlm.nih.gov/pubmed/30043679
http://dx.doi.org/10.1177/1049732318786484
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author Beecham, Emma
Langner, Richard
Hargrave, Darren
Bluebond-Langner, Myra
author_facet Beecham, Emma
Langner, Richard
Hargrave, Darren
Bluebond-Langner, Myra
author_sort Beecham, Emma
collection PubMed
description The concept of quality of life (QoL) is used in consultations to plan the care and treatment of children and young people (CYP) with brain tumors (BTs). The way in which CYP, their parents, and their health care professionals (HCP) each understand the term has not been adequately investigated. This study aimed to review the current qualitative research on CYP, parents’ and clinicians’ concepts of QoL for CYP with BTs using meta-ethnography. Six studies were found, which reflected on the concept of QoL in CYP with BTs; all explored the CYP’s perspective and one study also touched upon parents’ concept. A conceptual model is presented. Normalcy (a “new normal”) was found to be the key element in the concept. This study calls for a conception of QoL, which foregrounds normalcy over the more common health-related quality of life (HRQoL) and the need to understand the concept from all perspectives and accommodate change over time.
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spelling pubmed-62934562018-12-26 Children’s and Parents’ Conceptualization of Quality of Life in Children With Brain Tumors: A Meta-Ethnographic Exploration Beecham, Emma Langner, Richard Hargrave, Darren Bluebond-Langner, Myra Qual Health Res Research Articles The concept of quality of life (QoL) is used in consultations to plan the care and treatment of children and young people (CYP) with brain tumors (BTs). The way in which CYP, their parents, and their health care professionals (HCP) each understand the term has not been adequately investigated. This study aimed to review the current qualitative research on CYP, parents’ and clinicians’ concepts of QoL for CYP with BTs using meta-ethnography. Six studies were found, which reflected on the concept of QoL in CYP with BTs; all explored the CYP’s perspective and one study also touched upon parents’ concept. A conceptual model is presented. Normalcy (a “new normal”) was found to be the key element in the concept. This study calls for a conception of QoL, which foregrounds normalcy over the more common health-related quality of life (HRQoL) and the need to understand the concept from all perspectives and accommodate change over time. SAGE Publications 2018-07-25 2019-01 /pmc/articles/PMC6293456/ /pubmed/30043679 http://dx.doi.org/10.1177/1049732318786484 Text en © The Author(s) 2018 http://www.creativecommons.org/licenses/by-nc/4.0/ This article is distributed under the terms of the Creative Commons Attribution-NonCommercial 4.0 License (http://www.creativecommons.org/licenses/by-nc/4.0/) which permits non-commercial use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access pages (https://us.sagepub.com/en-us/nam/open-access-at-sage).
spellingShingle Research Articles
Beecham, Emma
Langner, Richard
Hargrave, Darren
Bluebond-Langner, Myra
Children’s and Parents’ Conceptualization of Quality of Life in Children With Brain Tumors: A Meta-Ethnographic Exploration
title Children’s and Parents’ Conceptualization of Quality of Life in Children With Brain Tumors: A Meta-Ethnographic Exploration
title_full Children’s and Parents’ Conceptualization of Quality of Life in Children With Brain Tumors: A Meta-Ethnographic Exploration
title_fullStr Children’s and Parents’ Conceptualization of Quality of Life in Children With Brain Tumors: A Meta-Ethnographic Exploration
title_full_unstemmed Children’s and Parents’ Conceptualization of Quality of Life in Children With Brain Tumors: A Meta-Ethnographic Exploration
title_short Children’s and Parents’ Conceptualization of Quality of Life in Children With Brain Tumors: A Meta-Ethnographic Exploration
title_sort children’s and parents’ conceptualization of quality of life in children with brain tumors: a meta-ethnographic exploration
topic Research Articles
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6293456/
https://www.ncbi.nlm.nih.gov/pubmed/30043679
http://dx.doi.org/10.1177/1049732318786484
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