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

BACKGROUND: 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. AIM: To develop recommendations for healthcare professionals on how to deal with families before and during the intrauterine or perinatal loss of their child. METHODS: 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. DISCUSSION: The co-creative design of this study enables the experience-based development of recommendations for healthcare professionals. CLINICAL TRIAL REGISTRATION: 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 ).