Assessing Knowledge of Caregivers of Children with Congenital Adrenal Hyperplasia

the words Congenital adrenal hyperplasia written onto a chalkboard with a doctor holding the boardCongenital adrenal hyperplasia (CAH) is a genetic adrenal disorder, and it is characterized by low levels of cortisol.  People with CAH may also have aldosterone deficiency and/or an excess of androgen.  It is a rare disorder.

Children who have CAH need a knowledgeable caregiver to help them, particularly in times of adrenal crisis and acute illness.  In acute illness, those children require stress dosing of hydrocortisone.

A study published in the Journal of Pediatric Nursing in December 2011 assessed caregiver knowledge.  The descriptive, exploratory study aimed to assess knowledge of CAH, adrenal crisis, stress dosing during acute illness; it also looked at caregivers’ self-efficacy in managing adrenal crisis and stress dosing of children with CAH.  The study was published as the article “Caregiver knowledge and self-confidence of stress dosing of hydrocortisone in children with congenital adrenal hyperplasia.”

The researchers distributed a survey to collect information about child and family demographics.  That same survey also assessed caregiver knowledge of CAH and stress dosing instruction history, as well evaluating self-efficacy. There were 60 caregivers involved in the study.

It was found that these caregivers for children with congenital adrenal hyperplasia have a solid knowledge base of the disorder.  They also maintain a reasonably high degree of self-efficacy of stress dosing.

The study noted that even though most of the caregivers surveyed had a currently filled prescription for injectable hydrocortisone, fewer than 40% of them had received that prescription at the time of the child’s CAH diagnosis.

Additionally, only 70% of those surveyed had been given written guidelines for the proper stress dosing procedure; only 50% of them received an injection technique demonstration.

It was found that those caregivers who had received written guidelines and a demonstration scored significantly higher in self-efficacy in managing their child’s adrenal crisis and in doing an injection.

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