G20 Parents experiences of going home with their infant following first stage cardiac surgery for single ventricle heart condition

Abstract

Aims: The study presented here retrospectively explored how parents felt about going home with their infants following first stage cardiac surgery for single ventricle heart. Methods: Parents, all members of Little Hearts Matter (LHM, a UK Congenital Heart Disease Charity) completed an online questionnaire which asked about family demographics, time of diagnosis, location of specialist heart centre, distance from home, discharge information, social support, confidence, anxiety and how parents felt at the time of discharge (T0) and at the time of completing the questionnaire (T1). A non-experimental survey design was used; the questionnaire was structured so that both parents could answer the questions independently. 62 families with infants aged between 0-2 years were sent an email via LHM inviting them to complete the online questionnaire during Nov 2012. There were 22 responses (35% response rate) from 6 couples, 15 mothers and 1 father. Care had been received at 11 different specialist cardiac centres across the UK and 1 in Australia. Results: The answers from the open ended questions which explored how parents felt about going home and their experiences were thematically analysed using an inductive approach. Five main themes arose: Mixed emotions ‘fear versus excitement’; the need for effective discharge preparation for parents; the need for effective discharge planning and preparation for community staff and local hospital teams; the need for access to information and advice (once home) and gaining control: the need to return to family functioning. Conclusion: The study confirms anecdotal experiential evidence and has provided new insights into factors that may be associated with discharge from hospital to home for parents of infants with complex congenital heart disease. Implications for the review of children’s congenital cardiac services will be discussed specifically in relation to the discharge support role of ward nurses, children’s cardiac nurse specialists, psychologists and community teams.