Cargando…
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...
Autores principales: | , , , |
---|---|
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 |
_version_ | 1783380539488600064 |
---|---|
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. |
format | Online Article Text |
id | pubmed-6293456 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2018 |
publisher | SAGE Publications |
record_format | MEDLINE/PubMed |
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 |
work_keys_str_mv | AT beechamemma childrensandparentsconceptualizationofqualityoflifeinchildrenwithbraintumorsametaethnographicexploration AT langnerrichard childrensandparentsconceptualizationofqualityoflifeinchildrenwithbraintumorsametaethnographicexploration AT hargravedarren childrensandparentsconceptualizationofqualityoflifeinchildrenwithbraintumorsametaethnographicexploration AT bluebondlangnermyra childrensandparentsconceptualizationofqualityoflifeinchildrenwithbraintumorsametaethnographicexploration |