Parents’ preparedness for their infants’ discharge following first-stage cardiac surgery: development of a parental early warning tool

Abstract

AimThe aim of this study was to explore parental preparedness for discharge and their experiences of going home with their infant after the first-stage surgery for a functionally univentricular heart.BackgroundTechnological advances worldwide have improved outcomes for infants with a functionally univentricular heart over the last 3 decades; however, concern remains regarding mortality in the period between the first and second stages of surgery. The implementation of home monitoring programmes for this group of infants has improved this initial inter-stage survival; however, little is known about parents’ experiences of going home, their preparedness for discharge, and parents’ recognition of deterioration in their fragile infant.MethodThis study was conducted in 2011–2013; eight sets of parents were consulted in the research planning stage in September, 2011, and 22 parents with children aged 0–2 years responded to an online survey during November, 2012–March, 2013. Description of categorical data and deductive thematic analysis of the open-ended questions were undertaken.ResultsNot all parents were taught signs of deterioration or given written information specific to their baby. The following three themes emerged from the qualitative data:mixed emotions about going home,knowledge and preparedness, andsupport systems.ConclusionsParents are not adequately prepared for discharge and are not well equipped to recognise deterioration in their child. There is a role for greater parental education through development of an early warning tool to address the gap in parents’ understanding of signs of deterioration, enabling appropriate contact and earlier management by clinicians.

The effect of pre-hospital discharge care program on mothers’ knowledge and reported practice for children with congenital heart surgery

“…[16] The mothers should be informed during discharge instructions and be aware of the warning signs and be alert if anyone sign of these happened, the mothers should be reported and attend to the hospital for early intervention, and avoid further complication. This was supported by Gaskin et al [17] Discharge instruction increased mothers' knowledge regarding care of their children after open heart surgery that improved outcomes, this finding was in the same line with Ozcan et al, [10] Wu et al [18] and Remya. [19] In relation to mothers' reported practice and knowledge on caring for their children with congenital heart surgery the discharge care improved their knowledge and reported practice.…”

Parents’ perceptions during the transition to home for their child with a congenital heart defect: How can we support families of children with hypoplastic left heart syndrome?

“…Gaskin, Barron, and Daniels () conducted a qualitative study using an online survey to determine parents’ preparedness for discharge and their experience once going home. Infants were between zero and 2 years old and either had HLHS or hypoplastic right heart syndrome.…”

“…First‐time parents feared the typical duty of taking care of their infant with the added responsibilities associated with an infant with CHD, but they were excited as well to bond with their infant and be a parent. Caregivers who had older children were generally more excited to go home and be with their family (Gaskin et al., ).…”

Acceptability of a parental early warning tool for parents of infants with complex congenital heart disease: a qualitative feasibility study

“…This is only achievable if parents fully understand their infant’s CHD and the signs of deterioration to look out for,10–12 are adequately prepared prior to discharge for their transition from hospital to home10 13 and know who to contact for appropriate advice and support 4 10 12. In response to this need, an early warning tool, the Congenital Heart Assessment Tool (CHAT),10 was developed using the principles of Paediatric Early Warning Scores (PEWS)14–16 in 2012 by a group of clinicians, parents and CHD charity members.…”

“…Parent preparation before discharge ensures understanding of how to assess their infant daily or at any other time if their infant’s condition had changed,10 interpret the significance of the signs by using the CHAT and record findings in a diary. Findings about the number of daily CHAT recordings, how warning signs were presented and the acceptability and feasibility of the CHAT for parents are presented in this manuscript.…”