Stillbirth, still life: A qualitative patient-led study on parents’ unsilenced stories of stillbirth

Abstract

Abstract Our objective was to explore parents’ experiences of stillbirth using a patient-led qualitative approach, in the Canadian context. Parents who had experienced stillbirth in the previous five years were recruited through posters and snowball sampling. We conducted a co-design focus group to set the direction of our research, narrative interviews, and a reflect focus group to engage parents in finalizing the analysis and findings. Data was analysed iteratively using a participatory approach with grounded theory principles. Our findings highlight that stillbirth is a story of death, but it is also a story of life. Parents (n=11) require the space to experience both the birth and death elements of the story; yet, one or both elements are often silenced. Stillbirth, still life was the core concept that emerged from parents’ stories of their stillborn babies. Parents’ narratives are driven by the need to honour their babies’ lives. They are learning to be unsilenced.