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

Laura Rautmann, Stefanie Witt (), Christoph Theiding, Birgit Odenwald, Uta Nennstiel-Ratzel, Helmuth-Günther Dörr and Julia Hannah Quitmann
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Laura Rautmann: Department of Medical Psychology, Center for Psychosocial Medicine, University Medical Center Hamburg-Eppendorf, Martinistraße 52, W26, 20246 Hamburg, Germany
Stefanie Witt: Department of Medical Psychology, Center for Psychosocial Medicine, University Medical Center Hamburg-Eppendorf, Martinistraße 52, W26, 20246 Hamburg, Germany
Christoph Theiding: Department of Medical Psychology, Center for Psychosocial Medicine, University Medical Center Hamburg-Eppendorf, Martinistraße 52, W26, 20246 Hamburg, Germany
Birgit Odenwald: Bavarian Screening Center, Bavarian State Office for Health and Food Safety, Veterinärstraße 2, 85764 Oberschleißheim, Germany
Uta Nennstiel-Ratzel: Bavarian Screening Center, Bavarian State Office for Health and Food Safety, Veterinärstraße 2, 85764 Oberschleißheim, Germany
Helmuth-Günther Dörr: Department of Pediatric Endocrinology, University Children’s Hospital Erlangen, Loschgestr. 15, 91054 Erlangen, Germany
Julia Hannah Quitmann: Department of Medical Psychology, Center for Psychosocial Medicine, University Medical Center Hamburg-Eppendorf, Martinistraße 52, W26, 20246 Hamburg, Germany

IJERPH, 2023, vol. 20, issue 5, 1-15

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: congenital adrenal hyperplasia; 21-hydroxylase deficiency; newborn screening; psychological stress; parental needs; parental coping; rare disease (search for similar items in EconPapers)
JEL-codes: I I1 I3 Q Q5 (search for similar items in EconPapers)
Date: 2023
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