NICU Parent Preferences for Stakeholder Engagement in Research.

Abstract

Engagement of parents as stakeholders in the research process can help ensure that interventions are aligned with their needs and experiences, but little is known about their preferences for research collaboration. The purpose of this qualitative, exploratory study was to explore former neonatal intensive care unit (NICU) parents' attitudes toward engagement as parent collaborators and identify potential barriers and facilitators to parent collaboration in research. Three focus groups and 3 interviews were conducted. Participants completed a demographic survey including information about their child's hospitalization. Parents were asked to discuss their NICU story, involvement in the parent community, experience with research, and factors influencing their decision to collaborate on a research study. Nine parents completed the study. Participation was motivated by a desire to help other families. Recruitment suggestions included using parent organizations, social media networks, and advertising in the NICU. Facilitators to research engagement were passion about research topic, distance participation, affecting change, helping other parents, and compensation. Barriers included time constraints and unresolved trauma. NICU nurses can leverage their relationships with parents to act as liaisons between research teams and parents, helping recruit and encouraging them to form research partnerships. Parents are interested in collaborating with neonatal research teams when they can improve experiences for other families and can see or help implement change. Researchers should be conscious of constraints on parents' ability to meet frequently or in person and offer accommodations such as conference calls and online training.