From worry, to warriors: an empowerment program for parents of infants diagnosed with a critical congenital heart defect (cCHD)
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In the United States every year, approximately 7,200 infants are born with a critical congenital heart defect (cCHD), a life-threatening condition that often requires infant hospitalization and multiple surgeries after an infant's birth (CDC, 2020). A diagnosis of cCHD before birth, or prenatally, is almost always unexpected and leads to disruptions in parental occupations, or the everyday activities associated with being a parent. Current literature has revealed that parents are not equipped to navigate the challenges and barriers associated with parenting a hospitalized, critically ill infant. Lack of parent preparedness along with several other contributing factors have been associated with increased parent stress, difficulties with parent/infant bonding and a negative impact on parent mental health and quality of life. Prenatal parent education programs often have positive effects on parent outcomes. However, they typically focus on the childbirth process rather than empowering parents and preparing them for the early stages of parenthood (Entsieh & Hallström, 2016). For decades, occupational therapy practitioners have supported critically ill infants and their parents through family education, health promotion and advocacy, focusing on developmental, physical, and mental health. The following chapters provide an overview of current literature supporting the identified problem and a proposed solution; From Worry, to Warriors, a virtual parent empowerment program that utilizes key constructs from the profession of occupational therapy. Through participation in this program, parents will gain new knowledge, confidence, and a critical support network to navigate the challenges of becoming a parent to a critically ill infant.
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