Important knowledge for parents of children with heart disease: parent, nurse, and physician views

Abstract

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.

Instrument to assess educational programs for parents of children with congenital heart disease undergoing cardiac surgery

“…3 Users' understating of information is critical to ensure patients' well-being after discharge. 1,8 In this context, we find the concept of "health literacy," a social determinant defined as the skill "to understand instructions, adopt or disregard health beliefs, and practice self-care to improve care results and reduce treatment costs." 9 This concept becomes particularly relevant in pediatrics because health-related action outcomes are strongly associated with their parents' health literacy, who are completely responsible for their care at home once they are discharged.…”

“…8,10 This way, health care teams should use different strategies to convey information in a comprehensible manner to each user, also taking into account their specific characteristics so that they understand their children's CHD, thus favoring home-based care practices, especially in relation to treatment adherence and the prevention of risk behaviors. [8][9][10][11][12] …”

Development of a clinician–parent home care education intervention

“…5,6 It has previously been described that current parent home care educational materials are inadequate. 7 Especially given the presence of different perspectives between the medical team and parents regarding what parents most need to know in order to optimise care for children with CHD. 7 There is a paucity of literature related to home care education interventions specific for parents with CHD children.…”

“…7 Especially given the presence of different perspectives between the medical team and parents regarding what parents most need to know in order to optimise care for children with CHD. 7 There is a paucity of literature related to home care education interventions specific for parents with CHD children. Previous efforts to address home care education gaps include the addition of a discharge educator, single-ventricle home-monitoring programmes, and the Parent Education Discharge Instruction programme.…”

Reply to Letter to the Editor: Important knowledge for parents of children with heart disease: parent, nurse, and physician views

“…We published data from these focus groups for two primary reasons. 1 First, healthcare providers need to be aware of the information parents consider important, but healthcare providers may notfor 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.…”