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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

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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. / Rautmann, Laura; Witt, Stefanie; Theiding, Christoph; Odenwald, Birgit; Nennstiel-Ratzel, Uta; Dörr, Helmuth-Günther; Quitmann, Julia Hannah.

In: INT J ENV RES PUB HE, Vol. 20, No. 5, 4493, 03.03.2023.

Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review

Harvard

Rautmann, L, Witt, S, Theiding, C, Odenwald, B, Nennstiel-Ratzel, U, Dörr, H-G & Quitmann, JH 2023, 'Caring for a Child with Congenital Adrenal Hyperplasia Diagnosed by Newborn Screening: Parental Health-Related Quality of Life, Coping Patterns, and Needs', INT J ENV RES PUB HE, vol. 20, no. 5, 4493. https://doi.org/10.3390/ijerph20054493

APA

Rautmann, L., Witt, S., Theiding, C., Odenwald, B., Nennstiel-Ratzel, U., Dörr, H-G., & Quitmann, J. H. (2023). Caring for a Child with Congenital Adrenal Hyperplasia Diagnosed by Newborn Screening: Parental Health-Related Quality of Life, Coping Patterns, and Needs. INT J ENV RES PUB HE, 20(5), [4493]. https://doi.org/10.3390/ijerph20054493

Vancouver

Rautmann L, Witt S, Theiding C, Odenwald B, Nennstiel-Ratzel U, Dörr H-G et al. Caring for a Child with Congenital Adrenal Hyperplasia Diagnosed by Newborn Screening: Parental Health-Related Quality of Life, Coping Patterns, and Needs. INT J ENV RES PUB HE. 2023 Mar 3;20(5). 4493. https://doi.org/10.3390/ijerph20054493

Bibtex

@article{2ab4c4275c41487ca134948b036aa199,
title = "Caring for a Child with Congenital Adrenal Hyperplasia Diagnosed by Newborn Screening: Parental Health-Related Quality of Life, Coping Patterns, and Needs",
abstract = "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.",
keywords = "Infant, Newborn, Female, Humans, Child, Adrenal Hyperplasia, Congenital/psychology, Retrospective Studies, Quality of Life, Cross-Sectional Studies, Neonatal Screening, Adaptation, Psychological",
author = "Laura Rautmann and Stefanie Witt and Christoph Theiding and Birgit Odenwald and Uta Nennstiel-Ratzel and Helmuth-G{\"u}nther D{\"o}rr and Quitmann, {Julia Hannah}",
year = "2023",
month = mar,
day = "3",
doi = "10.3390/ijerph20054493",
language = "English",
volume = "20",
journal = "INT J ENV RES PUB HE",
issn = "1660-4601",
publisher = "Multidisciplinary Digital Publishing Institute (MDPI)",
number = "5",

}

RIS

TY - JOUR

T1 - Caring for a Child with Congenital Adrenal Hyperplasia Diagnosed by Newborn Screening: Parental Health-Related Quality of Life, Coping Patterns, and Needs

AU - Rautmann, Laura

AU - Witt, Stefanie

AU - Theiding, Christoph

AU - Odenwald, Birgit

AU - Nennstiel-Ratzel, Uta

AU - Dörr, Helmuth-Günther

AU - Quitmann, Julia Hannah

PY - 2023/3/3

Y1 - 2023/3/3

N2 - 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.

AB - 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.

KW - Infant, Newborn

KW - Female

KW - Humans

KW - Child

KW - Adrenal Hyperplasia, Congenital/psychology

KW - Retrospective Studies

KW - Quality of Life

KW - Cross-Sectional Studies

KW - Neonatal Screening

KW - Adaptation, Psychological

U2 - 10.3390/ijerph20054493

DO - 10.3390/ijerph20054493

M3 - SCORING: Journal article

C2 - 36901502

VL - 20

JO - INT J ENV RES PUB HE

JF - INT J ENV RES PUB HE

SN - 1660-4601

IS - 5

M1 - 4493

ER -