Psychosocial experiences of parents of infants with hypoplastic left heart syndrome in the PICU.

OBJECTIVE: To evaluate the psychosocial status of mothers and fathers of infants with hypoplastic left heart syndrome while in the PICU. DESIGN: A retrospective study combining interviews and psychometric testing of parents. SETTING: Tertiary hospital PICU. SUBJECTS: Twenty-nine parents (16 mothers and 13 fathers) of surviving children. INTERVENTION: A semistructured face-to-face interview was conducted to explore parental experiences, and a Structured Clinical Interview for Diagnosis-Clinical Version (posttraumatic stress disorder module) was conducted to determine the possibility of an acute stress disorder or a posttraumatic stress disorder. MEASUREMENT AND MAIN RESULTS: All parents reported multiple stresses which commenced with their infant's diagnosis and endured throughout their infant's time in PICU. The Structured Clinical Interview for Diagnosis revealed that acute stress disorder or posttraumatic stress disorder developed in 24 parents (83%). Of 18 parents whose infants were diagnosed with hypoplastic left heart syndrome in utero, eight of nine mothers (88%) and six of nine fathers (66%) had posttraumatic stress disorder. Of 11 parents whose infants were diagnosed with hypoplastic left heart syndrome postbirth, six of seven mothers had acute stress disorder and one mother had posttraumatic stress disorder, and of four fathers, two fathers had acute stress disorder and one father had posttraumatic stress disorder. The prevalence of parental stress-related disorder was not different between mothers and fathers (p = 0.85). Only five parents were free of traumatic stress-related illness. Parents also experienced losses. Many parents were marginalized from their infant's care by the environment of PICU. Fifty percent of mothers experienced difficulties with parental-infant bonding. Ten parents (34%) began the process of adaptation to their infant's hypoplastic left heart syndrome and were assisted by the support and sensitivity of staff or had discovered other resources. CONCLUSIONS: All parents of surviving infants with hypoplastic left heart syndrome in PICU, irrespective of timing of diagnosis, experienced numerous stresses and losses, and the majority exhibited clinical levels of traumatic stress. Receiving the diagnosis itself is very traumatic and is compounded by the environment of the PICU which alienates parents from their infants and interferes with parent-infant bonding. Parental adaptation to this situation can be assisted by staff.