Needs for Post-hospital Education among Parents of Infants and Toddlers with Congenital Heart Disease

PURPOSE: This study was conducted to investigate the educational needs of parents of infants and toddlers with congenital heart disease (CHD) after hospital discharge. METHODS: Qualitative content analysis was conducted of in-depth interviews of eight parents, and the results of an online survey of 171 parents were analyzed quantitatively. RESULTS: Only 16.4% of parents reported that they had received education after hospital discharge on how to provide care for a child with CHD at home. The main reason why parents did not receive education on this topic was that they did not have sufficient opportunities or information (75.5%). In addition, 97.1% of parents stated that they needed educational programs that would be available at home after discharge. In terms of specific educational content, parents expressed the highest needs for education on the symptoms of CHD and ways to cope with them, the prognosis of CHD, and the growth and development of infants and toddlers with CHD. CONCLUSION: The study showed that parents’ educational needs were high in many ways. However, the information and educational opportunities offered after discharge were insufficient compared to those needs. Further research is needed to develop post-hospital educational programs that meet their needs.