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.

No abstract

Transition from hospital to home was complex and multi-faceted, with unanticipated physical and emotional transitions superimposed upon those that were expected.

Aim: To explore parents' experiences at the time of diagnosis of complex congenital heart disease (CHD) for their infant, and to compare whether experiences differ when receiving an antenatal versus postnatal diagnosis. Background: The time point at which parents receive a diagnosis of CHD has changed over the years due in part to advancements in fetal ultrasound; however, CHD still remains undiscovered until after birth in some cases. The psychological impact of time of diagnosis on parents' experiences has not been well researched. Method: Descriptive and thematic analysis of primary mixed qualitative and quantitative data, collected during 2012-2013, from an online survey of parents (n=28) of infants who had undergone stage one surgery for a functionally univentricular heart. Findings: Four themes emerged: parents' understanding of the condition, parents' feelings at the time of diagnosis, sources of support and sources of additional information. Conclusion: There are implications for practice in terms of who provides the diagnosis and more importantly how well this is explained. Professionals need to assess parents' emotional status, information needs and level of understanding irrespective of time of diagnosis, so that support is individualised, sensitive and time appropriate.

The study highlighted the benefit of appropriately preparing parents before discharge, using the CHAT, to enable identification of normal infant behaviour and to detect signs of clinical deterioration. The study also demonstrated the importance of providing parents with information about when and who to call for management advice and support.

The version presented here may differ from the published version or, version of record, if you wish to cite this item you are advised to consult the publisher's version. Please see the 'permanent WRaP URL' above for details on accessing the published version and note that access may require a subscription.

No abstract

available online: https://journals.rcni.com/nursing-standard/evidence-andpractice/care-of-infants-children-and-adults-with-congenital-heart-disease-ns.2019.e11405/full. A note on versions:The version presented here may differ from the published version or, version of record, if you wish to cite this item you are advised to consult the publisher's version. Please see the 'permanent WRaP URL' above for details on accessing the published version and note that access may require a subscription.For more information, please contact wrapteam@worc.ac.uk 1 Key issues in the care of children, young people and adults with Congenital Heart Disease AbstractThere have been significant advances in surgical, medical and nursing care for infants and children requiring cardiac surgery for Congenital Heart Disease (CHD) over the last three decades. This means that the number of adults known to have moderate and complex CHD is now in fact greater than the number of children with CHD. This article considers key issues for nurses in relation to the implications of (childhood) healthcare experiences for children and adults with CHD, and an understanding of the biopsychosocial impact of CHD on the individual and their families. It identifies the key issues and standards of care required in the UK (and world-wide) in the care of this unique group of patients.