Maternal experiences making a decision about heart surgery for their young children with congenital heart disease

Aim. The aim of this study was to investigate the essence of the experience of mothers during the decision‐making process when facing their less than three‐year‐old child undergoing heart surgery due to congenital heart disease (CHD). Methods. In this phenomenological study in Taiwan nine mothers were interviewed in their homes. They were invited to share their experience of family interactions and relationships while facing a decision about their child's heart surgery. The interviews were recorded and transcribed for further analysis according to Colaizzi's phenomenological methodology. Results. The essence of the maternal experience themes during the decision‐making process included (i) understanding the surgery step by step, (ii) role pressure, (iii) constructing care‐taking ability, (iv) endeavouring to maintain family functioning while preparing for surgery and (v) deliberate consideration to make the correct decision. Conclusions. When parents face their child having CHD and plan heart surgery, the whole family is living through a stressful decision‐making process. According to the results of this study, it is obvious that the caregivers and their whole families experience psychological distress, role reorganization and remodelling of family functioning. Relevance to clinical practice. The results of this study provide evidence‐based essential knowledge that will assist the management of such decision‐making processes and help to prepare the child and the family to have confidence in the heart surgery.