Sonia Dahan1,2,3, Claude Julie Bourque1,2,4,5,6, Martin Reichherzer3, Josée Prince7, Ginette Mantha7,8, Melissa Savaria3, Annie Janvier1,2,3,4,5,6,9. 1. CHU Sainte-Justine Research Center, Montréal, QC, Canada. 2. Unité d'éthique clinique, CHU Sainte-Justine, Montréal, QC, Canada. 3. Division of Neonatology, CHU Sainte-Justine, Montréal, QC, Canada. 4. Unité de recherche en éthique clinique et partenariat famille (UREPAF), Montréal, QC, Canada. 5. Department of Pediatrics, Université de Montréal, Montréal, QC, Canada. 6. Bureau de l'Éthique Clinique (BEC), Université de Montréal, Montréal, QC, Canada. 7. Parent Representative, Montréal, QC, Canada. 8. Préma-Québec, Association for Preterm Infants, Longueuil, QC, Canada. 9. Unité de soins palliatifs, CHU Sainte-Justine, Montréal, QC, Canada.
Abstract
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.
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.
Authors: Loredana Cena; Paolo Biban; Jessica Janos; Manuela Lavelli; Joshua Langfus; Angelina Tsai; Eric A Youngstrom; Alberto Stefana Journal: Front Psychol Date: 2021-02-24