Background and aims Parentsof infant with congenital heart disease have often insufficient knowledge andexperience anxiety. This may affect their coping after discharge. Individualised written information is appreciated, but has not been evaluatedfor contributions to coping in this population. The aim of this study was toassess whether individualised written information improves parental perceptionof knowledge and coping after discharge.
Methods and results Writteninformation based on transition theory, possible to individualise to each infantand family, was developed and a pragmatic controlled trial with subsequentgroups was conducted. Parents of 52 term infants undergone heart surgery in theneonatal period were included. The Control group (26) received standardinformation and the intervention group (26) received individualised writteninformation. Parents responded to questionnaires at discharge and by phone callthree weeks after discharge. Parents in the intervention group reportedsignificantly better knowledge (p = 0.02) and coping after discharge (p = 0.03) thanthe control group.
Conclusions Individualizedwritten information based on transition theory improves knowledge and coping. Both oral and individualised, written information had impact on this result.
Parents of infants withcomplex heart defects that require additional surgery later in infancy had lowest perception of knowledge and coping.