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Caring for a Child with Congenital Adrenal Hyperplasia Diagnosed by Newborn Screening: Parental Health-Related Quality of Life, Coping Patterns, and Needs

Diagnosing a child by newborn screening with classic congenital adrenal hyperplasia due to 21-hydroxylase deficiency (CAH) causes multiple challenges for the affected parents and the whole family. We aimed to examine the health-related Quality of Life (HrQoL), coping, and needs of parents caring for...

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Autores principales: Rautmann, Laura, Witt, Stefanie, Theiding, Christoph, Odenwald, Birgit, Nennstiel-Ratzel, Uta, Dörr, Helmuth-Günther, Quitmann, Julia Hannah
Formato: Online Artículo Texto
Lenguaje:English
Publicado: MDPI 2023
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10002056/
https://www.ncbi.nlm.nih.gov/pubmed/36901502
http://dx.doi.org/10.3390/ijerph20054493
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author Rautmann, Laura
Witt, Stefanie
Theiding, Christoph
Odenwald, Birgit
Nennstiel-Ratzel, Uta
Dörr, Helmuth-Günther
Quitmann, Julia Hannah
author_facet Rautmann, Laura
Witt, Stefanie
Theiding, Christoph
Odenwald, Birgit
Nennstiel-Ratzel, Uta
Dörr, Helmuth-Günther
Quitmann, Julia Hannah
author_sort Rautmann, Laura
collection PubMed
description Diagnosing a child by newborn screening with classic congenital adrenal hyperplasia due to 21-hydroxylase deficiency (CAH) causes multiple challenges for the affected parents and the whole family. We aimed to examine the health-related Quality of Life (HrQoL), coping, and needs of parents caring for a child with CAH to develop demand-responsive interventions for improving the psychosocial situation of affected families. In a retrospective cross-sectional design, we assessed HrQoL, coping patterns, and the needs of parents caring for a CAH-diagnosed child using specific questionnaires. Data of 59 families with at least one child diagnosed with CAH were analyzed. The results show that mothers and fathers in this study reached significantly higher HrQoL scores compared to reference cohorts. Decisive for the above-average parental HrQoL were effective coping behaviors and the parental needs being met. These findings verify the importance of helpful coping patterns and rapid fulfillment of parental needs for maintaining a good and stable HrQoL of parents with a child diagnosed with CAH. It is crucial to strengthen the parental HrQoL to build a reasonable basis for a healthy upbringing and improve the medical care of CAH-diagnosed children.
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spelling pubmed-100020562023-03-11 Caring for a Child with Congenital Adrenal Hyperplasia Diagnosed by Newborn Screening: Parental Health-Related Quality of Life, Coping Patterns, and Needs Rautmann, Laura Witt, Stefanie Theiding, Christoph Odenwald, Birgit Nennstiel-Ratzel, Uta Dörr, Helmuth-Günther Quitmann, Julia Hannah Int J Environ Res Public Health Article Diagnosing a child by newborn screening with classic congenital adrenal hyperplasia due to 21-hydroxylase deficiency (CAH) causes multiple challenges for the affected parents and the whole family. We aimed to examine the health-related Quality of Life (HrQoL), coping, and needs of parents caring for a child with CAH to develop demand-responsive interventions for improving the psychosocial situation of affected families. In a retrospective cross-sectional design, we assessed HrQoL, coping patterns, and the needs of parents caring for a CAH-diagnosed child using specific questionnaires. Data of 59 families with at least one child diagnosed with CAH were analyzed. The results show that mothers and fathers in this study reached significantly higher HrQoL scores compared to reference cohorts. Decisive for the above-average parental HrQoL were effective coping behaviors and the parental needs being met. These findings verify the importance of helpful coping patterns and rapid fulfillment of parental needs for maintaining a good and stable HrQoL of parents with a child diagnosed with CAH. It is crucial to strengthen the parental HrQoL to build a reasonable basis for a healthy upbringing and improve the medical care of CAH-diagnosed children. MDPI 2023-03-03 /pmc/articles/PMC10002056/ /pubmed/36901502 http://dx.doi.org/10.3390/ijerph20054493 Text en © 2023 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 Article
Rautmann, Laura
Witt, Stefanie
Theiding, Christoph
Odenwald, Birgit
Nennstiel-Ratzel, Uta
Dörr, Helmuth-Günther
Quitmann, Julia Hannah
Caring for a Child with Congenital Adrenal Hyperplasia Diagnosed by Newborn Screening: Parental Health-Related Quality of Life, Coping Patterns, and Needs
title Caring for a Child with Congenital Adrenal Hyperplasia Diagnosed by Newborn Screening: Parental Health-Related Quality of Life, Coping Patterns, and Needs
title_full Caring for a Child with Congenital Adrenal Hyperplasia Diagnosed by Newborn Screening: Parental Health-Related Quality of Life, Coping Patterns, and Needs
title_fullStr Caring for a Child with Congenital Adrenal Hyperplasia Diagnosed by Newborn Screening: Parental Health-Related Quality of Life, Coping Patterns, and Needs
title_full_unstemmed Caring for a Child with Congenital Adrenal Hyperplasia Diagnosed by Newborn Screening: Parental Health-Related Quality of Life, Coping Patterns, and Needs
title_short Caring for a Child with Congenital Adrenal Hyperplasia Diagnosed by Newborn Screening: Parental Health-Related Quality of Life, Coping Patterns, and Needs
title_sort caring for a child with congenital adrenal hyperplasia diagnosed by newborn screening: parental health-related quality of life, coping patterns, and needs
topic Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10002056/
https://www.ncbi.nlm.nih.gov/pubmed/36901502
http://dx.doi.org/10.3390/ijerph20054493
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