Peer support groups for families in Neonatology: Why and how to get started?

AIM: To describe the development of peer-to-peer support meetings between parents of children in neonatal intensive care unit (NICU) and veteran resource parents who had a previous NICU experience. METHODS: The study had two steps: a needs assessment and a feasibility pilot study. Parental perspectives were investigated using mixed methods. RESULTS: One hundred and fifty-three parents were participated. NICU parents (89%) wished to meet resource parents to discuss: their parental role, normalising their experience and emotions, adapting to their new reality, control, guilt, trust and coping. Practical aspects of the meetings were tested/finalised. Resource parent moderators reported that the presence of more than one moderator per meeting was essential. A checklist of topics to discuss was developed. Having a diversity of moderators (fathers, diagnoses other than prematurity, for example) was judged important. The name of the meeting had an impact on attendance: there were less participants when the word "support" was used. The best location (central, parents' kitchen) and optimal time/duration of meetings, selection of parent moderators and compensation were also determined. CONCLUSION: Peer support meetings moderated by resource parents provide a unique and useful means to support NICU parents. Future investigations will explore whether these meetings will improve clinical outcomes.