Parental understanding of their children’s heart disease is inadequate, which may contribute to poor health outcomes. The purpose of this study was to determine what parental knowledge is important in the care of children with heart disease from the perspective of parents, nurses, and physicians.

Focus groups were formed with parents of children with single ventricle congenital heart disease (CHD), biventricular CHD, and heart transplantation, and with nurses and physicians who provide care for these children. A nominal group technique was used to identify and prioritise important parental knowledge items and themes. The voting data for each theme were reported by participant type – parent, nurse, and physician – and patient diagnosis – single ventricle CHD, biventricular CHD, and heart transplantation.

The following three themes were identified as important by all groups: recognition of and response to clinical deterioration, medications, and prognosis and plan. Additional themes that were unique to specific groups included the following: medical team members and interactions (parents), tests and labs (parents), neurodevelopmental outcomes and interventions (physicians), lifelong disease requiring lifelong follow-up (physicians and nurses), and diagnosis, physiology, and interventions (single ventricle and biventricular CHD).

Parents, nurses, and physicians have both common and unique views regarding what parents should know to effectively care for their children with single ventricle CHD, biventricular CHD, or heart transplantation. Specific targeted parental education that incorporates these findings should be provided to each group. Further development of questionnaires regarding parental knowledge with appropriate content validity is warranted.

Our previous work demonstrated that digital video recording of operations is the best way to describe the morphological features and complex dynamic physiology of surgical treatment of congenitally malformed hearts. Parental consent is required for video recording, and some parents have requested, and obtained, a copy of the video of the operation performed on their child. Our present aim was to explore their feelings and opinions having viewed the recording of the surgical procedures.

This exploratory study examined the views of 17 parents, comprising 7 couples, 2 mothers, and 1 father, after requesting, and then watching, the recording of the operation performed on their child. The audio-taped, semistructured interviews were analyzed for the thematic content.

All parents watched the videos at least once, and no parent exhibited distress as a result. Curiosity and desire for learning, and wanting to know what exactly happened to the child during the operation, were the most common reasons for requesting the video. Parents reported that the videos were also useful in sharing the experience with family and friends. The videos had no effect on the attitudes of the parents towards the surgical team. Parents made recommendations to increase the length of the edited videos and add labels and voice-overs.

Parents of children with congenitally malformed hearts want to watch the recording of the operation performed because of their need for information, and to understand the experience of their children when separated from them. Research is needed to assess the potential value of operative videos in facilitating parental knowledge and coping when children undergo major cardiac surgery.