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Navigating the Ethical Liminalities of Stillbirth Research: Key Considerations in Conducting Trauma-Informed Studies Involving Grieving Parents

Poster
Authors Josephine T. V. Greenbrook
Felicitas Steinhoff
Published in Accepted for poster presentation at the International Stillbirth Alliance's Stillbirth Conference in Madrid, October 5-6, 2019.
Publication year 2019
Published at Department of Sociology and Work Science
Institute of Health and Care Sciences
Language en
Keywords Stillbirth, research ethics, research participation, retraumatization, posttraumatic growth, meaning-making.
Subject categories Sociology (excluding Social Work, Social Psychology and Social Anthropology), Psychiatry, Psychology (excluding Applied Psychology), Obstetrics, Gynecology and Reproductive Medicine, Medical Ethics, Ethics, Reproductive health

Abstract

Introduction: Stillbirth represents a major burden of disease globally, with millions of families impacted annually. When participating in research, afflicted parents make a significant contribution to identifying effective ways of responding to their loss and suffering. Whilst research participation carries risks of negative outcomes, such as increased psychological distress, retraumatization, and microaggressions, it can also promote meaning-making and post-traumatic growth. Whilst a knowledge gap exists surrounding parents’ experiences of their involvement, it remains clear that studies must be conducted in an ethical and trauma-informed manner. Description: The present contribution identifies potential risks, whilst also highlighting benefits involved in grieving parents’ participation in stillbirth research. Lending inspiration from study designs and ethics protocols from related fields, researchers can design studies congruent parents’ positions. Researchers must consider timing and approach, maintain sensitivity in establishing relevance, and cultivate understanding surrounding the role that meaning-making and empowerment play in post-traumatic growth. Skills in empathic listening are paramount, and where cultural discordance between participants and researchers exists, cultural sensitivity must be cultivated. Finally, studies ought to plan for care referral pathways when needed, as well as participant follow-up, given the possible recurrence of emotional distress post-traumatic stress. Summary: Researchers must consider several key factors during design, recruitment, data collection, and follow-up, to do justice to their ethical responsibilities to participants in these vital studies. The present contribution takes an empathic approach to the problem, by presenting both risks and benefits reported to be involved in research participation, highlighting opportunities and pitfalls that exist when navigating the ethical liminalities of stillbirth research.

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