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

  • Kerry Gaskin

Student thesis: Doctoral ThesisDoctor of Philosophy


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.
Date of Award2016
Original languageEnglish
Awarding Institution
  • Coventry University
SupervisorCharlotte Hilton (Supervisor), Gill Furze (Supervisor), Martin Bollard (Supervisor) & Penney Upton (Supervisor)

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