Stillbirth, still life: A qualitative patient-led study on parents’ unsilenced stories of stillbirth
Date
2017
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Abstract
Objective: Explore parents’ experiences of stillbirth using a patient-led qualitative approach. Methods: Parents who had experienced stillbirth in the previous 5 years were recruited through posters and snowball sampling, each participating in one or more data collection event. 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 were analysed iteratively using a participatory grounded theory approach. Results: Parents’ (n=11) experiences tended to be expressed in the form of two narratives: clinical and personal; the historical silent discourse permeated both narratives. The clinical experience, Abandoned in silence, was sub-divided into three categories: 1) Lead me through the decision with one sub-category: Recognize that I am having a birth and death experience; 2) I need specialized care now; and 3) I need specialized care later. The personal experience, Shrouded in silence, was sub-divided into three categories: 1) I survived the space between; 2) I am learning to forge a new path; and 3) My daughter’s name is Charlotte. Stillbirth is a story of death, but it is also a story of life. In stillbirth, parents 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. Conclusion: Parents’ narratives are driven by the need to honour their babies’ lives. They are learning to be unsilenced.
Description
Keywords
Maternal health, perinatal loss, fetal death, fetal loss, patient-oriented research, patient and public involvement
Citation
Roland, B., Wheatley, V., Jones, A., & Gillis, C. (2017). Stillbirth, still life: A qualitative patient-led study on parents’ unsilenced stories of stillbirth (Unpublished internship report). University of Calgary, Calgary, AB.