Parents’ experience of child loss during pregnancy or birth: protocol for an explorative, sequential and participative mixed-methods study

Internationally, the rate of child loss during pregnancy or birth remains high. This has not only physical but also psychological implications for the parents. While much is known today about the medium- and long-term impact of such a loss, very little research is available on the experience and needs before and during intrauterine or perinatal loss. In addition, healthcare professionals feel insecure and unprepared when dealing with this specific group, which also has a lasting impact on those affected. To develop recommendations for healthcare professionals on how to deal with families before and during the intrauterine or perinatal loss of their child. An explorative, sequential and participatory mixed-methods study will be conducted. Along its design, an affected mother is involved throughout the entire study. In detail, workshops, focus groups and narrative interviews with parents are planned. We will include parents who have lost their child during pregnancy or birth within the last 12 months and live in Germany, Austria or Switzerland. The results of the research are then translated into recommendations, which are reviewed and confirmed together with affected parents in a Delphi survey. Finally, a guideline for healthcare professionals will be developed. The co-creative design of this study enables the experience-based development of recommendations for healthcare professionals. The study was registered in the National Library of Medicine on January 13th, 2025 with the unique ClinicalTrials.gov identifier NCT06771661 ( https://clinicaltrials.gov/study/NCT06771661 ). Losing a baby during pregnancy or at birth is still common worldwide, and it affects parents both physically and emotionally. While we know a lot about the long-term effects on parents, there is little research on what families go through during or just before the loss. Many nurses, physicians and midwives also do not feel confident or prepared to support families during these moments, which can make the situation even more difficult for those affected. This study aims to provide helpful guidance for healthcare professionals on supporting families during this challenging time. The researchers will talk directly with parents who recently experienced a loss in Germany, Austria or Switzerland. They will use interviews, group discussions, and workshops to understand what parents need most. In addition, a mother who has lost her child is involved in every part of the study. She advises and supports the researchers the whole time based on her own experiences. The findings will be turned into recommendations and reviewed with affected parents to make sure they are accurate and helpful. In the end, a guide will be developed for healthcare professionals to support families experiencing child loss during pregnancy or birth.