Engaging families with experience of neonatal hypoxic ischemic encephalopathy: a call to action.

INTRODUCTION: Hypoxic ischaemic encephalopathy (HIE) causes significant burdens to families, health care systems, and society. At a multistakeholder meeting organized by the conect4children (c4c) project, families and advocacy groups noted that their voices are under-represented during the planning and execution of research. AIM: To provide the voices of a group of HIE families from Europe and North America METHODS: This is an informal description of the personal experience of 6 families with extensive experience of HIE and advocacy. The experiences of these families were captured during teleconferences and e-mail exchanges. RESULTS: The families agreed that high quality clinical care that is timely, well-organized, and evidence-based supports research. Unfortunately, best clinical practice is not universally followed. The literature provides many good practices for incorporating families into all stages of research that need to be implemented. Recommendations for engaging families in research are presented. CONCLUSIONS: Effective research will be promoted if families and people with lived experience of neonatal care are part of the study team, and study leadership, at all stages of research. Participation in research by families will be promoted by action to overcome the variations in care that affect families and to promote optimal care in all settings. IMPACT: What does this article add to the existing literature? Hypoxic Ischaemic Encephalopathy merits specific attention in the context of other types of neonatal encephalopathy. Family experience is central to research about hypoxic ischaemic encephalopathy. The voices of families with experience of hypoxic ischaemic encephalopathy are not listened to sufficiently. We propose an action plan to improve research for hypoxic ischaemic encephalopathy in the light of family experience.