Caring for a Child with Congenital Adrenal Hyperplasia Diagnosed by Newborn Screening: Parental Health-Related Quality of Life, Coping Patterns, and Needs
Rautmann L, Witt S, Theiding C, Odenwald B, Nennstiel-Ratzel U, Dörr HG, Quitmann JH (2023)
Publication Type: Journal article
Publication year: 2023
Journal
Book Volume: 20
Article Number: 4493
Journal Issue: 5
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.
Authors with CRIS profile
Helmuth-Günther Dörr
Professur für Kinderheilkunde mit dem Schwerpunkt Kinder-Endokrinologie und Diabetologie (Stiftungsprofessur)
Involved external institutions
Germany (DE)How to cite
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. International Journal of Environmental Research and Public Health, 20(5). https://doi.org/10.3390/ijerph20054493
MLA:
Rautmann, Laura, et al. "Caring for a Child with Congenital Adrenal Hyperplasia Diagnosed by Newborn Screening: Parental Health-Related Quality of Life, Coping Patterns, and Needs." International Journal of Environmental Research and Public Health 20.5 (2023).
BibTeX: Download