Parental Management of Adrenal Crisis in Children with Congenital Adrenal Hyperplasia Public Deposited

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Last Modified
  • March 19, 2019
Creator
  • Fleming, Louise
    • Affiliation: School of Nursing
Abstract
  • Background: Life-threatening conditions in children change the meaning of parenting. Classical congenital adrenal hyperplasia (CAH), a rare, endocrine disorder, requires caregivers to inject a child with hydrocortisone intramuscularly during illness and adrenal crisis. The inability to effectively respond to a crisis prevents parents from optimally managing the condition. Few studies have examined parental education on managing crises or parental management strategies. Identifying gaps in parent education by healthcare providers, especially concerning times of crisis, is necessary to promote positive outcomes, for children and family members. Purpose: This is a three-manuscript dissertation. Chapter 2 presents a systematic review of the literature surrounding CAH management. Chapter 3 presents the results of a two-phase, mixed methods study examining parental management of adrenal crisis in children with CAH. Chapter 4 compares the family experiences of parents of girls versus boys with CAH. Methods: Chapter 2 is a systematic literature review examining the management and care related to children with CAH. Chapter 3 presents the results of a mixed methods study. In phase 1, parents completed online questionnaires about family life in the context of having a child with CAH. Results from Phase 1 were used to select a purposive sample for interviews in Phase 2 to elicit descriptions of parents’ experiences of managing CAH-related crises and their perceptions of the consequences of living with CAH. Chapter 4 compares the family experiences of parents of girls versus boys with CAH. Results: Four distinct themes emerged from the literature regarding family management of CAH. As parents’ management ability increases, CAH has less impact on the family. Additionally, parents feel better able to manage the condition after their child turns 5 years old. Families having a daughter with CAH experience significant, additional challenges such as stigmatization, surgery, and disclosure about their daughter’s CAH. Conclusion: Healthcare providers should deliver increased and more frequent education regarding adrenal crisis management and offer more in-depth, emotional assistance to parents of children with CAH. Furthermore, providers need to create a network of support specifically for families of girls born with CAH that addresses both surgical decisions and the stigmatization often associated with ambiguous genitalia.
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Rights statement
  • In Copyright
Advisor
  • Van Riper, Marcia
  • Thoyre, Suzanne
  • Knafl, Kathleen
  • Knafl, George
  • Meyer, Echo
Degree
  • Doctor of Philosophy
Degree granting institution
  • University of North Carolina at Chapel Hill Graduate School
Graduation year
  • 2016
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