Facets of Parenting a Child with Hypoplastic Left Heart Syndrome

Table 1

Guiding principles for developing multifaceted interventions.

→	Phases of Parenting under Pressure
↓Facets	Adjusting to the inconceivable	Growing increasingly attached	Accommodating to the unexpected	Encountering new challenges
Survival parenting	Validate emotional responses	Facilitate development of appropriate vigilance	Coach parent to provide situation-appropriate vigilance	Encourage respite
Expert parenting	Offer information to facilitate parental decision-making following diagnosis	Facilitate increasing knowledge about baby’s condition while in the hospital	Facilitate process of parent becoming the expert including their use of a weigh scale and oximeter	Translate relevant and comprehensive knowledge regarding care of child with CHD to parents over time
“Hands-Off” parenting	Advocate for parents to have even a brief time with their newborn in the delivery room before transfer to pediatric centre	Coach parents to advocate for themselves to be as “hands-on” as possible even in critical care settings	Respect and utilize parental expert knowledge and role when child returns to hospital for subsequent procedures and surgeries	Value parent involvement
Supported parenting	Identify and mobilize support	Encourage parents to involve extended family during hospitalization	Facilitate parent process of drawing forth support, both formal and informal	Support parents in navigating the system
Uncertain parenting	Determine appropriate timing of intervention	Facilitate expression of grief responses through the telling of illness narratives (i.e., events around time of diagnosis)	Encourage parent-to-parent support	Supporting parents overtime