"NICU Doesn't Stop in the NICU": Maternal Perspectives of the Impact of a NICU Experience over Time.

BACKGROUND

Despite the growing literature demonstrating the psychological impact of a NICU admission on parents, the longer-term adjustment to a NICU experience following an infant's discharge is largely unknown. This study aimed to explore the NICU experience and the psychosocial trajectories of NICU graduate families after discharge.

METHODS

Using a qualitative design, a select group of mothers participated in qualitative interviews after completion of a quantitative survey. Interviews were completed online over a secure video platform. Participants (n = 21) included three groups of mothers of NICU graduates aged 2-24. Interviews ranged from 45 to 90 min, depending on the number of NICU children. The NICU care experience was explored as well as the impact of the NICU experience on parental coping, relationships, overprotective parenting, and post-traumatic growth.

RESULTS

Participants reflected on their NICU care experience and offered concrete suggestions for improvements in care. Short-term symptoms of psychological distress immediately following the NICU admission were described; however, psychological adjustment and parenting issues resulting from a NICU experience appeared to be long-term. Common themes included: (a) Effect on the Family, (b) Grief and Loss, (c) Post-Traumatic Growth, and (d) Goals for Intervention.

CONCLUSIONS

These findings expand our understanding of the complexity of the NICU family experience, demonstrate the prolonged effects of a NICU admission on the family over time, and offer areas for improvement in care across the continuum.