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Being the Pillar for Children with Rare Diseases—A Systematic Review on Parental Quality of Life

Parents caring for children with rare diseases fear the long-term progression of the child’s disease. The current study aims to systematically investigate the quality of life (QoL) in parents of children with different rare diseases. We performed a systematic literature search including quantitative...

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Autores principales: Boettcher, Johannes, Boettcher, Michael, Wiegand-Grefe, Silke, Zapf, Holger
Formato: Online Artículo Texto
Lenguaje:English
Publicado: MDPI 2021
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8125857/
https://www.ncbi.nlm.nih.gov/pubmed/34066738
http://dx.doi.org/10.3390/ijerph18094993
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author Boettcher, Johannes
Boettcher, Michael
Wiegand-Grefe, Silke
Zapf, Holger
author_facet Boettcher, Johannes
Boettcher, Michael
Wiegand-Grefe, Silke
Zapf, Holger
author_sort Boettcher, Johannes
collection PubMed
description Parents caring for children with rare diseases fear the long-term progression of the child’s disease. The current study aims to systematically investigate the quality of life (QoL) in parents of children with different rare diseases. We performed a systematic literature search including quantitative studies on QoL of parents caring for children and adolescents with rare diseases in five databases (APA PsycArticles, APA PsycInfo, MEDLINE, PSYNDEXplus, and PubMed) published between 2000–2020. Of the 3985 titles identified, 31 studies met the inclusion criteria and were selected for narrative review. Studies were included if they investigated predictors of parental QoL or reported QoL compared to normative samples, parents of healthy children, or children with other chronic diseases. We used the Newcastle–Ottawa Scale to assess methodological quality. The systematic review revealed that parents of children with rare diseases experience reduced QoL compared to parents with healthy children and norm values. Psychosocial factors, beyond disease-specific predictors, were shown to influence parental QoL substantially and may thus present an essential aspect within interventions for this highly burdened group. Health care professionals should consider and address the impairment of parental QoL due to the child’s rare disease. We discuss insights into existing research gaps and improvements for subsequent work.
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spelling pubmed-81258572021-05-17 Being the Pillar for Children with Rare Diseases—A Systematic Review on Parental Quality of Life Boettcher, Johannes Boettcher, Michael Wiegand-Grefe, Silke Zapf, Holger Int J Environ Res Public Health Systematic Review Parents caring for children with rare diseases fear the long-term progression of the child’s disease. The current study aims to systematically investigate the quality of life (QoL) in parents of children with different rare diseases. We performed a systematic literature search including quantitative studies on QoL of parents caring for children and adolescents with rare diseases in five databases (APA PsycArticles, APA PsycInfo, MEDLINE, PSYNDEXplus, and PubMed) published between 2000–2020. Of the 3985 titles identified, 31 studies met the inclusion criteria and were selected for narrative review. Studies were included if they investigated predictors of parental QoL or reported QoL compared to normative samples, parents of healthy children, or children with other chronic diseases. We used the Newcastle–Ottawa Scale to assess methodological quality. The systematic review revealed that parents of children with rare diseases experience reduced QoL compared to parents with healthy children and norm values. Psychosocial factors, beyond disease-specific predictors, were shown to influence parental QoL substantially and may thus present an essential aspect within interventions for this highly burdened group. Health care professionals should consider and address the impairment of parental QoL due to the child’s rare disease. We discuss insights into existing research gaps and improvements for subsequent work. MDPI 2021-05-08 /pmc/articles/PMC8125857/ /pubmed/34066738 http://dx.doi.org/10.3390/ijerph18094993 Text en © 2021 by the authors. https://creativecommons.org/licenses/by/4.0/Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (https://creativecommons.org/licenses/by/4.0/).
spellingShingle Systematic Review
Boettcher, Johannes
Boettcher, Michael
Wiegand-Grefe, Silke
Zapf, Holger
Being the Pillar for Children with Rare Diseases—A Systematic Review on Parental Quality of Life
title Being the Pillar for Children with Rare Diseases—A Systematic Review on Parental Quality of Life
title_full Being the Pillar for Children with Rare Diseases—A Systematic Review on Parental Quality of Life
title_fullStr Being the Pillar for Children with Rare Diseases—A Systematic Review on Parental Quality of Life
title_full_unstemmed Being the Pillar for Children with Rare Diseases—A Systematic Review on Parental Quality of Life
title_short Being the Pillar for Children with Rare Diseases—A Systematic Review on Parental Quality of Life
title_sort being the pillar for children with rare diseases—a systematic review on parental quality of life
topic Systematic Review
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8125857/
https://www.ncbi.nlm.nih.gov/pubmed/34066738
http://dx.doi.org/10.3390/ijerph18094993
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