Conflicting responses: the experiences of fathers of infants diagnosed with severe congenital heart disease.

Abstract

To explore the experiences of fathers of infants newly diagnosed with severe congenital heart disease. An analysis of qualitative data collected as part of a larger longitudinal study of parenting the medically fragile infant. Eight fathers whose infants were hospitalized for severe congenital heart disease, were technology dependent at time of enrollment, and were expected to have serious chronic health problems at discharge. DATA COLLECTION MEASURES: Semistructured interviews in the hospital and the home until the child reached 15 months adjusted age. Findings indicate that fathers experience four interrelated conflicting reactions: the joy of seeing the child born and becoming a father, plus the sadness and loss associated with the baby's illness; the challenge of becoming attached while dealing with fears about the infant's vulnerability and potential death; the need to try to maintain control while feeling a loss of control; and the struggle to remain strong for others while hiding their intense emotions. These findings extend the previous limited research about fathers by identifying the unique conflicts fathers of seriously ill infants experience in coping with the child's diagnosis and treatment. Findings have implications for intervening with fathers during the early diagnostic phase of a serious illness, particularly serious congenital heart disease.