056 Parental Vigilance in Caring for Their Children With Hypoplastic Left Heart Syndrome

BACKGROUND: Hypoplastic left heart syndrome (HLHS) is a complex heart malformation that requires life-saving treatment within the first days of life if the child is to survive. Parents experience numerous challenges as they learn to parent a child with complex care requirements and to deal with the consequences of such intensive parenting on themselves as parents. The research question guiding this study was: Is the parenting process among parents of a child with HLHS characterized by exaggerated vigilant parental action and if so, how does this influence parental response? METHODS: This research was undertaken within a program of qualitative research in which 2 studies involved parents of children with HLHS, one cohort having undergone the classic Norwood approach and the other cohort the Sano approach. Interview data from both studies underwent a secondary thematic content analysis based on the sensitizing concepts of uncertainty, protectiveness, support, and mastery of complex care. Transcribed data from 55 interviews with parents (24 mothers and 17 fathers) of young children (2 months to 5 years of age) with HLHS were analyzed for relevant and recurring themes. RESULTS: Parents responded to caring for their child with complex care requirements within a context of uncertainty about their child’s immediate and long term survival and inconsistent, inadequate or waning support. Parent perceived these aspects of their experience to be out of their hands in contrast to what was in their hands. The parents focused on what they perceived to be in their hands by protecting their child from infection, mastering complex care (i.e., medications, feeds, oxygen), and monitoring medication effects on their children as well their growth. Vigilant parental actions were evident as parents became skilled at providing complex care. Parents said they were sometimes excessive in their vigilant actions. In retrospect they viewed this vigilance as appropriate in some situations and but exaggerated in other situations. CONCLUSION: Knowledge of vigilant and exaggerated vigilant parental actions in response to their child’s complex care has implications for health care providers who provide education and support for the parents of these children. Long term follow-up, both clinically and through research is needed to assess the long term consequences of exaggerated vigilant parental action on the child, parent and family and to determine and evaluate appropriate and timely intervention.