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Quality of life among parents of children with phenylketonuria (PKU)
BACKGROUND: Parents of children with chronic conditions are known to be at risk of impairment in their quality of life (QoL). Studies considering other chronic conditions proposed diverse factors to have an impact on the parent’s QoL. So far, there has been little research on parents who have a chil...
Autores principales: | , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
BioMed Central
2013
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3626680/ https://www.ncbi.nlm.nih.gov/pubmed/23537423 http://dx.doi.org/10.1186/1477-7525-11-54 |
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author | Fidika, Astrid Salewski, Christel Goldbeck, Lutz |
author_facet | Fidika, Astrid Salewski, Christel Goldbeck, Lutz |
author_sort | Fidika, Astrid |
collection | PubMed |
description | BACKGROUND: Parents of children with chronic conditions are known to be at risk of impairment in their quality of life (QoL). Studies considering other chronic conditions proposed diverse factors to have an impact on the parent’s QoL. So far, there has been little research on parents who have a child with phenylketonuria (PKU). This study was designed to evaluate the parental quality of life (PQoL) of parents of children and adolescents who have PKU and identify possible predictors of PQoL. METHODS: In this cross-sectional study 89 parents completed self-report measures of PQoL, family stress, social support, and parental coping. To determine the impact of these potential predictors on PQoL, regression and mediation analyses were performed. RESULTS: Most parents coped well with their children’s metabolic disorder. Family stress (β = −0.42; p < 0.001) and perceived social support (β = 0.33; p = 0.001) were proven to be the most powerful predictors, accounting together for 45% of the variance of PQoL. Social support mediated the association between family stress and PQoL. CONCLUSIONS: The current study indicates that parents of younger children are an especially vulnerable group. Members of health-care teams should be able to identify and empower vulnerable parents to seek and maintain social support. |
format | Online Article Text |
id | pubmed-3626680 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2013 |
publisher | BioMed Central |
record_format | MEDLINE/PubMed |
spelling | pubmed-36266802013-04-16 Quality of life among parents of children with phenylketonuria (PKU) Fidika, Astrid Salewski, Christel Goldbeck, Lutz Health Qual Life Outcomes Research BACKGROUND: Parents of children with chronic conditions are known to be at risk of impairment in their quality of life (QoL). Studies considering other chronic conditions proposed diverse factors to have an impact on the parent’s QoL. So far, there has been little research on parents who have a child with phenylketonuria (PKU). This study was designed to evaluate the parental quality of life (PQoL) of parents of children and adolescents who have PKU and identify possible predictors of PQoL. METHODS: In this cross-sectional study 89 parents completed self-report measures of PQoL, family stress, social support, and parental coping. To determine the impact of these potential predictors on PQoL, regression and mediation analyses were performed. RESULTS: Most parents coped well with their children’s metabolic disorder. Family stress (β = −0.42; p < 0.001) and perceived social support (β = 0.33; p = 0.001) were proven to be the most powerful predictors, accounting together for 45% of the variance of PQoL. Social support mediated the association between family stress and PQoL. CONCLUSIONS: The current study indicates that parents of younger children are an especially vulnerable group. Members of health-care teams should be able to identify and empower vulnerable parents to seek and maintain social support. BioMed Central 2013-03-28 /pmc/articles/PMC3626680/ /pubmed/23537423 http://dx.doi.org/10.1186/1477-7525-11-54 Text en Copyright © 2013 Fidika et al.; licensee BioMed Central Ltd. http://creativecommons.org/licenses/by/2.0 This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. |
spellingShingle | Research Fidika, Astrid Salewski, Christel Goldbeck, Lutz Quality of life among parents of children with phenylketonuria (PKU) |
title | Quality of life among parents of children with phenylketonuria (PKU) |
title_full | Quality of life among parents of children with phenylketonuria (PKU) |
title_fullStr | Quality of life among parents of children with phenylketonuria (PKU) |
title_full_unstemmed | Quality of life among parents of children with phenylketonuria (PKU) |
title_short | Quality of life among parents of children with phenylketonuria (PKU) |
title_sort | quality of life among parents of children with phenylketonuria (pku) |
topic | Research |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3626680/ https://www.ncbi.nlm.nih.gov/pubmed/23537423 http://dx.doi.org/10.1186/1477-7525-11-54 |
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