[The Unknown Journey: Uncertain Experiences in Mothers of Infants With Congenital Heart Disease Before Undergoing Open Heart Surgery].

BACKGROUND

Most children with complex congenital heart disease (CHD) require open-heart surgery within one year of birth to survive. Thus, new mothers of infants with CHD are faced with making unexpected and difficult decisions.

PURPOSE

This study was designed to explore the essence of the maternal uncertain experience prior to infants with CHD undergoing open-heart surgery.

METHODS

In this study, a phenomenological approach was used and data were collected using open-ended interview guidelines structured around the Uncertainty in Illness Theory. Nine mothers of infants with CHD who had received open-heart surgery were interviewed in a hospital interview room within two weeks the operation. Colaizzi's (1978) data processing procedure was applied in the post-interview analysis.

RESULTS

Five themes emerged: (1) Hit bottom and felt helpless; (2) Hit the road - An overwhelming sense of emergency; (3) The crunch - Do your best to accept destiny (4) Disease brought the unknown; (5) Hope in uncertainty.

CONCLUSIONS / IMPLICATIONS FOR PRACTICE: The high-risk nature of and their unfamiliarity with the surgery made the participants experience illness uncertainty. The medical system should develop more-structured CHD information and provide emotional support in a timely manner to alleviate illness uncertainty in mothers of infants with CHD.