Aims The study presented here retrospectively explored psychosocial adaptation and adjustment in parents going home for the first time with their infants following first stage cardiac surgery for single ventricle heart condition.

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, parents’ feelings about going home, confidence and anxiety 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 UK specialist cardiac centres and 1 in Australia.

Results There were no statistically significant differences between demographic data (age, education, ethnicity, employment, living arrangements, household income) when compared against mother’s anxiety and confidence at T0 or T1; however mothers living > 100 miles away from the specialist cardiac centre were statistically significantly more anxious at discharge T0 (p = 0.025) than those living <20 miles away. Mothers whose infant had a hypoplastic left heart were statistically significantly more anxious at discharge than those whose infants had hypoplastic right heart (p = 0.006) as were Fathers with a secondary school education compared to a Bachelor’s degree (p = 0.031) at T0 and T1 (p = 0.026). There was a statistically significant difference when comparing mothers’ anxiety levels at discharge T0 and T1 (p= < 0.0005) and confidence scores at T0 and T1 (p= < 0.0005) and Fathers’ anxiety levels at discharge T0 and T1 (p = < 0.018).

Conclusion This is the first study of its kind to explore parents’ psychosocial adaptation and adjustment during the transition from hospital to home following first stage cardiac surgery for single ventricle condition. The study provides new insights into transition for these parents. Implications for practice will be discussed.