"It was an overwhelming thing": parents' needs after infant diagnosis with congenital adrenal hyperplasia

Abstract

This study characterizes the experiences and expressed needs of parents following diagnosis of their newborn with congenital adrenal hyperplasia (CAH). Six parents (four mothers and two fathers) were interviewed about how they learned about CAH and its management, followed by qualitative data analysis. Coding of transcripts revealed several themes, including health communication problems, a lack of medical home and decision support, and a desire for parent-to-parent social support. Findings have implications for how family-centered health care is delivered following an unexpected newborn diagnosis.

Keywords: Children with special health care needs; Chronic conditions; Congenital adrenal hyperplasia; Decision support; Disorders of sex development; Endocrinology; Health literacy; Infants; Interview; Medical home; Newborn screening; Parents; Qualitative; Retrospective; Social support.