We thank Dr Tallon, Dr Kendall, and Dr Newall for their interest in our article. We wholeheartedly agree with their comments regarding the importance of multiple psychosocial issues on parents’ ability to care for their children with complex heart disease. Any comprehensive educational programme for caregivers of children with heart disease must account for the family’s situation including socio-economic status, resource availability, support from friends and family, cultural and language barriers, emotional health of the caregivers, and other sources of stress.

Although our long-term goal is to develop such a programme, the purpose of this research project was to develop a reliable and valid tool to assess parental knowledge. Such a tool could be used to assess the effectiveness of our current educational offerings, to identify factors, including psychosocial factors, influencing the acquirement and retention of important knowledge and skills, and to ultimately improve how we provide this education. The first step in developing such a tool is to identify appropriate content. To accomplish this, we developed focus groups of parents, nurses, and physicians to determine what each group considered most important for parents to know to care for their children with heart disease. We then used these data to develop a parent knowledge questionnaire, which we plan to pilot test in the future.

We published data from these focus groups for two primary reasons.Reference Daily, FitzGerald and Downing ¹ First, healthcare providers need to be aware of the information parents consider important, but healthcare providers may not – for example, “how to navigate a complex medical system”. Second, the content identified in these focus groups could serve as an outline for educational programmes for these parents. Put another way, if parents were taking a course on how to care for their children with heart disease, table 3 could serve as the syllabus. It does not define how information and skills should be taught or what other factors should be considered in teaching them, but rather the content of what must be taught. The comments by Dr Tallon, Dr Kendall, and Dr Newall focus primarily on psychosocial factors that clearly must be considered in the process of teaching important knowledge and skills. We completely agree with their statements; however, it was beyond the scope of this project to delve into this very important subject.