Caregiver Knowledge and Self-Confidence of Stress Dosing of Hydrocortisone in Children With Congenital Adrenal Hyperplasia

Abstract

Congenital adrenal hyperplasia (CAH) is a rare disorder characterized by cortisol deficiency, with/without aldosterone deficiency, and androgen excess. The purposes of this descriptive, exploratory study were to assess caregiver knowledge of CAH, adrenal crisis, and stress dosing of hydrocortisone during times of acute illness and to assess caregivers' self-efficacy in managing adrenal crisis and stress dosing of children with CAH. A survey was distributed that collected information about child and family demographics and about caregiver knowledge of the disorder and stress dosing instruction history and evaluated their self-efficacy. Caregivers of children with CAH (N = 60) have a solid knowledge base of the disorder and maintain a reasonably high degree of self-efficacy of stress dosing. Although most that were surveyed currently had a filled prescription for injectible hydrocortisone, less than 40% received the prescription at the time of their child's diagnosis. Only 70% surveyed had received a written guideline sheet outlining proper stress dosing procedure, and only half of them received an injection technique demonstration. Caregivers who received written instruction and demonstration of injection technique scored significantly higher in self-efficacy for managing adrenal crisis and the injection procedure.