Parents’ Preparedness for Their Infants’ Discharge Following First-stage Cardiac Surgery: Development of a Parental Early Warning Tool

Aim The 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. Background Technological 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. Method This 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. Results Not 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, and support systems. Conclusions Parents 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.

Gaining by Giving? Peer Research into Service User and Carer Perceptions of Inclusivity in Higher Education

Service users and carers (SUAC) have made significant contributions to professional training in social work courses in Higher Education (HE) over the past decade in the UK. Such participation has been championed by government, academics and SUAC groups from a range of theoretical and political perspectives. Most research into the effectiveness of SUAC involvement at HE has come from the perspectives of academics and very little SUAC-led research exists. This qualitative peer research was led by two members of the University of Worcester’s SUAC group. Findings were that SUAC perceived their involvement brought benefits to students, staff, the University and the local community. Significant personal benefits such as finding a new support network, increased self-development and greater confidence to manage their own care were identified in ways that suggested that the benefits that can flow from SUAC involvement at HE are perhaps more far-reaching than previously recognised. Barriers to inclusion were less than previously reported in the literature and the humanising effects of SUAC involvement are presented as a partial antidote to an increasingly marketised HE culture.