Psychosocial Adjustment and Adaptation in Parents of Infants with Complex Congenital Heart Disease Going Home for the First Time Following First Stage Cardiac Surgery: A Prospective Review

Aim: The study presented here prospectively explored psychosocial adaptation and adjustment (anxiety, depression & confidence) in parents going home for the first time with their infants following first stage cardiac surgery for complex congenital heart disease (CHD). Method: 17 parents (13 mothers, 4 fathers) of infants (n=13) being discharged from a specialist cardiac centre in the UK were recruited into a mixed methods feasibility study, from August 2013 until September 2015. Parents were randomised into either: Group A: home monitoring using weighing scales, an oxygen saturation monitor and a Congenital Heart Assessment Tool (CHAT); Group B: the CHAT tool only, or Group C: standard discharge care. Parents were interviewed at 4 time points: T0 before discharge, T1 2 weeks post discharge, T2 8 weeks post discharge and T3 after stage 2 surgery. Baseline demographic data was collected at T0 and parents completed PHQ9, GAD7 and Maternal Confidence score (MCS) at each interview. Results: A fear response was evident in all interviews at T0; 3 mothers and 1 father displayed signs of post-traumatic stress disorder at T0. Mean GAD7 scores were significantly higher before discharge (T0) compared to T3 (p<0.01, d=0.77). There was no significant difference in scores whilst the parents were at home with their infant (T1, T2). Mean PHQ9 scores were significantly higher at T0 than at T1 (p<0.01, d=1.03); T2 (p<0.05, d=0.87); T3 (p<0.01, d=1.1). Mean MCS were significantly higher at T1 (p<0.01, d=1.1), T2 (p<0.01, d=1.3), T3 (p<0.0005, d=1.6) than at T0. Conclusion: Signs of acute stress disorder: anxiety, depression, shock were evident in all interviews at T0. 4 parents showed signs of PTSD however these symptoms decreased over time as their confidence increased. Despite the small number of families recruited into the study, the results provide an important insight into the psychosocial support that parents require between stage 1 and 2 of their infants’ cardiac surgery.