The Process of Family Management When a Baby Is Diagnosed With a Lethal Congenital Condition

Abstract

The Family Management Style Framework (FMSF) was used as a conceptual basis for secondary data analysis of 55 previously conducted interviews with mothers and fathers of children with a lethal congenital condition from two surgical treatment eras. The directed content analysis was guided by a coding structure developed from family management dimensions identified in prior research of family response to childhood chronic conditions. Results indicated that application of the FMSF was helpful in differentiating families and their processes of family management at the onset of their infant’s illness through to surviving the first surgery and going home. The dimensions of Illness View and Child Identity were central to the parents’ capacity to manage their baby’s illness demands within their family context. Applying a robust family framework to a complex neonatal condition at illness onset provides compelling direction for clinical interventions and their rigorous evaluation.