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

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dc.contributor.authorRoland, Brenda
dc.contributor.authorWheatley, Venesa
dc.contributor.authorJones, Ashley
dc.contributor.authorGillis, Chelsia
dc.date.accessioned2019-03-07T21:23:31Z
dc.date.embargolift2019-09-01
dc.date.issued2017
dc.description.abstractObjective: 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.
dc.description.grantingagencyMaternal, Newborn, Child and Youth Strategic Clinical Network
dc.identifier.citationRoland, 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 Stillbirth, still life: A qualitative patient-led study on parents’ unsilenced stories of stillbirth (Unpublished internship report).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.
dc.identifier.doihttp://dx.doi.org/10.11575/PRISM/36175
dc.identifier.urihttp://hdl.handle.net/1880/109948
dc.language.isoeng
dc.publisher.departmentO’Brien Institute for Public Health
dc.publisher.facultyCumming School of Medicine
dc.publisher.institutionUniversity of Calgary
dc.subjectMaternal health
dc.subjectperinatal loss
dc.subjectfetal death
dc.subjectfetal loss
dc.subjectpatient-oriented research
dc.subjectpatient and public involvement
dc.subject.otherinternship report
dc.titleStillbirth, still life: A qualitative patient-led study on parents’ unsilenced stories of stillbirth
dc.typeworking paper
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