Verbal Information From Parents About Stillbirth: The VIPS Study (Phase One).

Abstract

Background: In many countries, a baby's cause of death (COD) following stillbirth is informed only by case notes and pathology investigations. However, parents' understanding of their baby's COD may inform or even change the COD diagnosis. We aimed to produce a standardised co-designed interview schedule to enable parents to contribute information to improve overall understanding of the causes of stillbirth.

Materials and methods: Consensus for the interview schedule was sought via a two-round modified Delphi study. We recruited internationally for panel membership comprising bereaved parents, clinicians, and researchers. In Round 1, each panellist provided up to five questions to ask bereaved parents. After collation into categories, Round 2 asked panellists to rate the importance of each question category on a four-point scale.

Results: Panellists (n = 126 Round 1, n = 75 Round 2) were mainly bereaved parents. In Round 1, 553 potential interview questions were generated. These were grouped into categories which were pregnancy experience, antenatal care, fetal wellbeing, maternal wellbeing, days Prior to stillbirth and perceived COD. These proposed questions and question categories were then put to panel members in Round 2. All categories achieved consensus for inclusion in the final interview schedule with positive consensus percentage scores ranging from 83% to 98%.

Conclusions: Panel membership comprising mainly bereaved parents provided a clear mandate for questions parents want to be asked. The interview schedule will soon be trialled with recently bereaved parents at a tertiary-referral maternity health service. Findings from the study will inform future research on how to include parents' voices in COD determination.