Empowering Parents in Crisis: An Integrative Review of Parental Experiences in the Context of Three Pediatric Episodically Life-Threatening Conditions

Chronic conditions, defined as conditions that persist over an extended period, require frequent health interventions, and may limit one’s daily activity. Some chronic conditions, specifically epilepsy, hemophilia, and congenital adrenal hyperplasia, in which a crisis that can be incredibly debilitating or even fatal may occur, can lead parents of these children to experience a unique form of stress. The purpose of this review is to examine these three conditions and identify strategies nurses can implement when interacting with caregivers of these children in a way that minimizes the stress experienced. This review followed the framework created by Whittemore and Knafl. A database search was conducted using CINAHL, PsychINFO, and PubMed. The authors included studies that were published in English, within the past ten years, and presented data on the stress and coping of parents of children with congenital adrenal hyperplasia, epilepsy, or hemophilia and excluded studies limited to adult children or reviews of the literature. Eighteen articles were included in this review. Upon reviewing the literature, five focus areas were identified including unpredictability during crisis, knowledge deficits of the condition, difficult interactions with medical system, perceived stigma and complex relationships, and fears for the future. This review includes promising results regarding intervention targeting the stress experienced by parents that can be implemented in specialty clinics to identify gaps for individual parents and families, creating a space in which they can be addressed effectively.