Parents ressources en néonatologie : évaluations d'expériences locales et perspectives de développement de pratiques partenariales innovantes

Partnering with parents in the Neonatal Intensive Care Unit (NICU) is not a new phenomenon. But being the parent of a sick child in the NICU will always be challenging. Many interventions have been attempted to improve the well-being of children and their parents in the NICU, such as involving veteran resource parents/patients. Resource parents are parents who have experienced the hospitalization of their child in NICU and use that unique perspective to contribute to clinical, research and teaching activities. Although stakeholders’ participation in healthcare is increasingly recommended, practical knowledge about their participation is rarely published, making knowledge transfer difficult.  Based on the study of Sainte-Justine Hospital experience of partnering with resource parents/patients, we will first present an overview of the roles assumed by RPs and an investigation of stakeholders’ motivations and impacts of their participation.  Since 2010, Thirty RPs were involved in a total of 653 activities related to clinical care (n = 413), teaching (n = 31) and research (n = 209); stakeholders had different degrees and intensity of involvement: all were involved in low-risk initiatives and 9 were in more complex activities. All of them described positive impacts associated with their participation and benefits to themselves, such as creating meaning making. Three reported traumatic memories that occurred during medical simulations. The majority of providers reported partnering with resource parents/patients improved their projects, but some also report this new collaboration is complex. The development and evaluation of peer-to-peer support meetings between parents of children in Neonatal Intensive Care Unit (NICU) and resource parents were co-developed with parents. 153 parents participated in the needs’ assessment and pilot phase. Forty-five NICU-parents attended 10 consecutive meetings; 39 evaluated the meetings and gave an average score of 8,7/10; 95% answered the meeting was useful to them and invoked 3 major themes: 1) decreasing isolation and being a community (73%), 2) hope and resilience (63%) and 3) getting practical “parent” information (32%). “Seeing is believing”: sharing stories with parents who had also been through a loss, sadness and grief, NICU-parents trusted it was possible to adapt and thrive. The meetings normalized their emotions (92%), decreased negative emotions (anger, sadness, guilt), empowered them in their parental role and helped them communicate with loved ones and providers. Developing partnership with resource parents/patients in pediatrics is both feasible and essential. The risks associated with these initiatives are low and can be mitigated while the benefits are numerous. This work allowed us to propose recommendations to help other pediatric units to develop similar programs.

Keyphrases: collaboration recherche, Veteran parents, quality control, stakeholders, family stakeholders, patient engagement, family-centred care, family integrated care, resource parents, hospital design, family partnership, quality of care, patient-centred care, medical education, collaborative research, peer-to-peer support