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Updated: Aug 13, 2026
The Hypoxic Ischemic Encephalopathy Model of Perinatal Ischemia
Published on: November 19, 2008
Engaging families with experience of neonatal hypoxic ischemic encephalopathy: a call to action
Betsy Pilon1, Maria Cavaller-Bellaubi2, Mandy Daly3
1Hope for HIE, West Bloomfield Township, MI, USA.
Insights
Family involvement is crucial for effective hypoxic ischaemic encephalopathy (HIE) research. Implementing best practices in clinical care and research engagement will improve outcomes for families affected by HIE.
Area of Science:
- Neonatal Neurology
- Clinical Research
- Patient Advocacy
Background:
- Hypoxic ischaemic encephalopathy (HIE) imposes substantial burdens on families, healthcare systems, and society.
- Families and advocacy groups highlight under-representation in HIE research planning and execution.
- Existing literature offers best practices for family involvement in research that require implementation.
Purpose of the Study:
- To amplify the perspectives of HIE-affected families from Europe and North America in research.
- To advocate for the inclusion of family voices in the HIE research landscape.
- To propose actionable strategies for enhancing family participation in HIE studies.
Main Methods:
- Informal description of personal experiences from 6 families with extensive HIE and advocacy involvement.
- Data collection through teleconferences and email exchanges.
- Qualitative synthesis of family experiences and recommendations.
Main Results:
- Families emphasize that high-quality, timely, organized, and evidence-based clinical care is essential for supporting research.
- A significant gap exists between recommended best clinical practices and their universal application.
- Numerous evidence-based strategies for integrating families into all research phases are available but not consistently applied.
Conclusions:
- Incorporating families and individuals with lived experience into study teams and leadership at all research stages will enhance research effectiveness.
- Addressing variations in care and promoting optimal care universally will encourage greater family participation in research.
- An action plan is proposed to improve HIE research by centering family experiences and ensuring their voices are heard.
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.
