Traversing the Boundaries and Borders of Discharge from Hospital Following First Stage Surgery for Complex Congenital Heart Disease: the Parents’ Experience

Aim: To explore parents’ experiences of the transition from hospital to home with their infant following first stage cardiac surgery for a univentricular heart or systemic shunt dependent cardiac lesion. Background: The process of monitoring a fragile infant at home in between stage 1 and 2 of cardiac surgery, takes the philosophical perspective of holistic care beyond the borders and boundaries normally expected of parents going home for the first time with their new baby. This neo-transition of becoming a medical parent is superimposed upon the multiple transitions already experienced whilst in hospital. Methods: A mixed methods feasibility study. Parents were recruited between August 2013 and February 2015. Parents of 80 infants were eligible; mothers (n=13) & fathers (n=4) of 13 infants consented to participate. Data was collected at four time points (before discharge; 2 weeks after; 8 weeks after; after stage 2 surgery) using self-report tools, semi-structured interviews and daily diaries. Qualitative findings regarding the borders & boundaries of going home are presented here. Results: Numerous physical, emotional & social boundaries & borders were evident during the transition from hospital to home. Traversing the physical boundary of leaving the hospital for the first time with their infant, was loaded with emotionally traumatic experiences that could not be separated from the specific physical transition of going home. For a while parents were in an uncertain place (betwixt and between) where they could not visualise what was ahead & how it would feel; this created anxiety & fear, at the same time as excitement to be going home. Conclusion Liminality as a concept emerged during transition from hospital to home; a crossing point from a comfort zone, safety and security (the ward) into the unknown uncertain place (home). Adjusting to the situation; developing confidence; becoming comfortable with new skills was a threshold concept to mastery of a new normal

Patterns of Transition Experience for Parents Going Home from Hospital with Their Infant After First Stage Surgery for Complex Congenital Heart Disease

Purpose: The purpose of this study was to explore parents’ experiences of one specific timepoint in their infant’s journey: the transition from hospital to home, following the first stage of their infant’s cardiac surgery for complex congenital heart disease. Design and Methods: A prospective longitudinal mixed methods study, underpinned with Middle Range Transition Theory (Meleis et al 2000). Face to face and telephone interviews were conducted and self-report forms completed by parents at four-time points: before discharge (T0), 2 weeks after discharge (T1), 8 weeks after discharge (T2) and after stage two surgery (T3). Interviews were transcribed verbatim before inductive thematic analysis Results: Parents were recruited over a 15-month period from 2013-2015. Twelve mothers and 4 fathers took part. The infants had functionally univentricular heart (left n=10, right n=1) and a systemic shunt dependent lesion, tetralogy of Fallot (n=1). Dynamic constructivist and constructionist social processes occurred for all parents, involving physical, physiological, psychological and cognitive elements within four ‘patterns of experience’, two of which ‘safety and security’ and ‘love and support’ are presented in this paper Implications: Parental support is essential; parents need to be engaged in discharge planning process and given the opportunity to express their needs to ensure that discharge care is truly patient and family centred. Conclusions: Transition from hospital to home was complex and multi-faceted, with unanticipated physical and emotional transitions superimposed upon those that were expected

Parents’ experiences of transitioning from hospital to home with their infant, following first stage cardiac surgery for complex congenital heart disease

Aim: To explore parents’ experiences of the transition from hospital to home with their infant, following first stage cardiac surgery for a functionally univentricular heart or systemic shunt dependent cardiac lesion. Background: The process of monitoring a fragile infant at home, in between stage 1 and 2 of cardiac surgery, takes the philosophical perspective of holistic care beyond the borders and boundaries normally expected of parents going home for the first time with their new baby. This neo-transition of becoming a medical parent is superimposed upon the multiple transitions already experienced during the birth and whilst in hospital (new baby, new to parenthood, sick baby, cardiac surgery, ongoing and lifelong care needs). The impact of these transitions, on parents’ wellbeing and the influence of parents’ demographics on their ability to effectively monitor their infant at home, has not previously been studied. Methods: A mixed methods study was conducted in two phases. Phase one was a retrospective survey of 22 families (35% response rate). Phase two prospectively explored parents’ experiences using semi-structured interviews and 3 self-report tools to assess anxiety, depression and confidence; with 13 mothers and 4 fathers of 13 infants. The qualitative data was thematically analysed; descriptive analysis of the quantitative data was undertaken using the Statistical Package for the Social Sciences (IBM SPSS Inc.) version 22 for Windows Results: Most parents felt unprepared for their infant’s discharge home; numerous physical, emotional and social boundaries and borders were evident during the transition from hospital to home, which impacted upon parents’ knowledge and preparedness. Traversing the physical boundary of leaving the hospital for the first time with their infant, was loaded with emotionally traumatic experiences that could not be separated from the specific physical transition of going home. For a while parents were in an uncertain place where they could not visualise what was ahead and how it would feel. This created anxiety and fear, at the same time as excitement to be going home. Liminality as a concept emerged during transition from hospital to home; a crossing point from a comfort zone, safety and security (the ward) into the unknown uncertain place (home). Adjusting to the situation; developing confidence; becoming comfortable with new skills was a threshold concept to mastery of a new normal. Conclusion: Discharge strategies need to be more consistent locally and nationally to ensure that parents are prepared physically, psychologically and socially for discharge home with their infant. Local and community health care professionals need to be better prepared to effectively support these infants and their parents at home

A service evaluation of Advanced Clinical Practitioners’ experiences of emergency redeployment to intensive care during the Covid-19 health crisis.

Aims: To explore the experiences of ACPs (and trainee ACPs) being redeployed from their current role to intensive care during the Covid 19 pandemic. Design: A service evaluation design, using an online survey. All ACPs that were redeployed to the intensive care unit during March-July 2020 were invited to participate via a purposive sampling technique. A six-step model of thematic analysis was used, underpinned by a middle range transition theory. Results: 26 ACPs responded. Four key themes emerged: Organisational culture, mixed emotions, experience level and social interaction. Conclusions: There were mixed experiences of redeployment and the range of emotions could be due to several key factors. Prior ICU experience could produce a positive experience for staff members as they felt more confident to return to the role. Concurrently, staff previously left this role for a reason (e.g. did not enjoy working on ICU) therefore on return due to redeployment ACPs may already have negative connotations linked to this work environment so this may have influenced their answers. More experienced ACPs may have found the transition easier as they were better equipped to deal with change management and working in different teams. Social support and interaction largely influenced whether the ACPs had a positive or negative experience of redeployment as did opinion and experience of management support. Recommendations: • Further large-scale research into the experiences of redeployed ACPs. • Improved organisational pandemic planning. • Proposal of compulsory rotation for ACP staff to improve experience level

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

Liminality as a Framework to Understand Parents’ Experiences of Going Home After Their Infants Complex Cardiac Surgery: A Conceptual Model

Background: Liminality, as a concept explores the ‘rite of passage’ through a transition (Turner 1967, Van Gennep 1960), in this case parents’ experiences of the transition from hospital to home for the first time with an infant following cardiac surgery for complex Congenital Heart Disease Aim: To present a conceptual framework arising from empirical findings, as an interpretative approach to the phenomenon of liminality for a group of parents Design This was a longitudinal qualitative feasibility study, within a constructivist paradigm. Parents were asked to participate in self-report tools and semi-structured interviews at four timepoints: before discharge [T0]; two weeks after discharge [T1], eight weeks after discharge [T2] and after stage two surgery [T3]. Interviews were transcribed verbatim and thematically analysed. Setting One tertiary children’s cardiac centre in the UK Subjects Eighty infants were screened during the 15month recruitment period, of whom 47 parents were eligible for participation; parents of 13 infants were recruited; parents of 8 infants took part in interviews (8 mothers, 4 fathers), between August 2013 and February 2015 Results: A betwixt and between time existed for parents, enabling them to develop, maintain and restore a sense of self and control, such that they were ready to face the hurdle of the transition from hospital to home with their fragile infant. Transition across the liminal space was a constraint for some and enabling for others. Parents were bounded by physical, emotional and social constraints in terms of their preparedness to go home. Conclusion: The model represents the parents’ experiences of transition through a pre-liminal phase (pivotal events), liminal phase (crossing the threshold of the ward into the outside world) to the post-liminal phase (mastery, developing confidence over time). Simplification of the model for practice will enable assessment of each family’s needs before discharge planning commences

Traversing the Boundaries and Borders of Discharge From Hospital Following First Stage Surgery for Complex CHD: the Parents’ Experience

Aim: To explore parents’ experiences of transition from hospital to home with their infant following first stage cardiac surgery for a univentricular heart or systemic shunt dependent cardiac lesion. Background: The process of monitoring a fragile infant at home between stage 1 and 2 of cardiac surgery, takes the philosophical perspective of holistic care beyond the borders and boundaries normally expected of parents going home for the first time with their new baby. This neo-transition of becoming a medical parent is superimposed upon the multiple transitions experienced whilst in hospital. Methods: Parents were recruited between August 2013 and February 2015; mothers (n=13) & fathers (n=4) of 13 infants consented to participate. Data was collected at four time points (before discharge; 2 weeks after; 8 weeks after; after stage 2 surgery) using semi-structured interviews. Results: Qualitative findings regarding the borders & boundaries of going home are presented here. Numerous physical, emotional & social boundaries & borders were evident during transition from hospital to home. Traversing the physical boundary of leaving the hospital for the first time with their infant, was loaded with emotionally traumatic experiences that could not be separated from the specific physical transition of going home. For a while parents were in an uncertain place where they could not visualise what was ahead & how it would feel; this created anxiety & fear, at the same time as excitement to be going home. Conclusion Liminality as a concept emerged during transition from hospital to home; a crossing point from a comfort zone, safety and security (the ward) into the unknown uncertain place (home). Adjusting to the situation; developing confidence; becoming comfortable with new skills was a threshold concept to mastery of a new normal. A conceptual framework emerged ‘The rite of passage for parents transitioning from hospital to home’

The Suitability of Discharge Information for Parents of Infants with Single Functioning Ventricle Heart Condition: Evolution of a Congenital Heart Assessment Tool (CHAT) for Parents

Whilst advances in the care of infants with complex congenital heart disease (CHD) have resulted in remarkably improved prognosis, death between first and second surgical stage has remained a concern in the UK and America particularly for those with single cardiac ventricle anatomy.1-8 This has prompted the development of home monitoring programs (HMP) to encourage early identification at home, of infants vulnerable to potentially life threatening events4, 5 ,9-13. However to date no randomised controlled trials have been published and therefore the robustness of the available research is debatable. In 2011 a research proposal was developed by KG (Coventry University) in collaboration with the team at Birmingham Children’s Hospital and Little Hearts Matter (LHM) to undertake a Feasibility Study (randomised controlled trial) to test the feasibility of using a Congenital Heart Assessment Tool (CHAT) as part of a home monitoring programme (HMP) for infants with single ventricle heart conditions and those with systemic shunt dependent heart conditions. A consultation event [funded by a Patient and Public Involvement (PPI) Bursary from the NIHR West Midlands Research Design Service ]was hosted by LHM in September 2011 during which a Focus Group was facilitated by KG with a small group of parents to ascertain their views regarding the implementation of a home monitoring programme. The Focus Group was transcribed, thematically analysed and subsequently contributed to the development of the content of the online survey and the Congenital Heart Assessment Tool (CHAT) which is being reported in this poster presentation