Community, Hope, and Resilience: Parental Perspectives on Peer Support in Neonatology.

To describe the perspective of parents who participated in peer-to-peer support meetings with parents of children in a neonatal intensive care unit (NICU) and veteran resource parents with previous NICU experience. During a longitudinal evaluation in a tertiary care NICU, participating parents were asked to evaluate meetings; with open-ended questions, they were asked about their perspectives. Results were analyzed using mixed methods. Forty-five NICU parents participated over a 10-week study period. They were followed longitudinally after attending at least 1 of the 10 meetings offered; 95% of parents (43 of 45) reported that the meeting was useful to them and gave an overall evaluation of 8.7 out of 10 (average). For each meeting, all the subjects on the checklist of the moderators (veteran resource parents) were discussed with new parents. When describing why and how the meetings were useful to them in their answers to open-ended questions, NICU parents reported 3 major themes: (1) decreasing isolation and being a community (73%), (2) hope and resilience (63%), and (3) getting practical "parent" information (32%). Sharing stories with parents who also had experienced loss, sadness, and grief, NICU parents trusted that it was possible to adapt and thrive. The meetings normalized parents' emotions (92%), decreased negative emotions (eg, anger, sadness, guilt), empowered them in their parental role, and helped them communicate with loved ones and providers. Peer support meetings are a unique and useful means to support parents. Future investigations will investigate whether and how this type of intervention can improve clinical outcomes.

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