The parental experience of participating in surgical decision-making regarding one's child with a congenital heart disease in Taiwan

Abstract

Purpose: This study explores how parents experienced the surgical decision-making process for their child with a congenital heart disease (CHD).

Design and methods: Purposive sampling was used in this qualitative descriptive study at a medical center in Northern Taiwan. Twelve parents whose children had cardiac corrective surgery participated in one-to-one in-depth interviews. The interview content subsequently was transcribed verbatim and analyzed by content analysis.

Results: Five themes, with 2 to 3 subthemes, were identified: 1) accumulating medical knowledge in a short time, 2) trusting the medical teams but parents needing clear communication, 3) feeling pervasive uncertainty, 4) using self-talk to calm down, and 5) looking for positive energy from various sources.

Conclusions: For the parents of these children with CHD, participating in surgical decision-making can be a difficult and stressful experience. When explaining the disease and treatment procedures, it is important for medical professionals to make sure of the individual parent's information needs, to use plain language and encourage parents to ask questions.

Practice implications: Although the surgery is imperative and inevitable, understanding the parents' worries and providing adequate support can help them reduce feelings of uncertainty during the decision-making and surgical processes.

Keywords: Children; Congenital heart disease; Decision-making; Parents; Surgery.