Parental experiences of discharge preparation and preparedness after infants' hospitalization for surgically correctable congenital anomalies.

OBJECTIVE

To explore parental experiences of pre-discharge education, discharge preparedness, and post-discharge support after infants' hospitalization for surgically correctable congenital anomalies (SCCAs).

STUDY

DESIGN

Qualitative study using semi-structured interviews with English-speaking women whose pregnancies were associated with SCCAs from 2018-2023 and resulted in live birth and survival to discharge from a tertiary care children's hospital. Interviews were analyzed thematically.

RESULTS

Twenty-two interviews were conducted. SCCAs included congenital diaphragmatic hernia (n = 8), congenital pulmonary airway malformations (n = 4), myelomeningocele (n = 5), gastroschisis (n = 4), or omphalocele (n = 1). Emergent themes were: (1) lack of consistency in pre-discharge education and preparation, (2) balancing anxiety and confidence, (3) parental need for multi-layered post-discharge support, and (4) parent-identified opportunities to strengthen discharge preparation and post-discharge support.

CONCLUSION

Parents of infants with SCCAs receive variable pre-discharge education that may limit self-efficacy and heighten anxiety during the transition home. Interventions including standardized, structured discharge education and post-discharge support may improve parental preparedness and post-discharge confidence.