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

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.

Keywords:

• maternal health
• perinatal loss
• fetal death
• fetal loss
• patient-oriented research
• patient and public involvement

Acknowledgements

We would like to dedicate this work to Kate, Henry, Caleb, Charlotte, Rio, Maddox, Emilina, Everly and Annalee. We would like to thank Debbie McNeil RN PhD, Scientific Director, Maternal Newborn Child and Youth Strategic Clinical Network, Alberta Health Services, for her feedback on our research proposal and manuscript. We would like to thank Amanda Gillis RN, Foothills Medical Center, Department of Labour & Delivery, for her practical, clinical insights. We would also like to thank our participants for sharing their stories. 

Conflict of interest

The authors declare that they have no conflict of interest.

Additional information

Funding

This research was completed as part of the Patient and Community Engagement Research (PaCER) internship, in which patients are trained to conduct experiential qualitative research. The PaCER internship program is funded by a number of donations. The costs associated with this internship study drew from the donation received from the Strategic Clinical Networks, Alberta Health Services (AHS SCN™).

Notes on contributors

Chelsia Gillis

Venesa Wheatley

Ashley Jones

Brenda Roland

Marlyn Gill

Nancy Marlett

Svetlana Shklarov