Stillbirth, still life: A qualitative patient-led study on parents’ unsilenced stories of stillbirth
Keywords:
maternal health, perinatal loss, fetal death, fetal loss, patient-oriented research, patient and public involvementAbstract
AbstractOur 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.
References
Amirav, I., Vandall-Walker, V., Rasiah, J., & Saunders, L. (2017). Patient and researcher engagement in health research: A parent's perspective. Pediatrics, 140(3). doi:10.1542/peds.2016-4127.
Berger, R. (2015). Now I see it, now I don’t: researcher’s position and reflexivity in qualitative research. Qualitative Research, 15(2), 219–234. doi:10.1177/1468794112468475.
Bourne, S. (1968). The psychological effects of stillbirths on women and their doctors. J R Coll Gen Pract, 16(2), 103–112.
Burden, C., Bradley, S., Storey, C., Ellis, A., Heazell, A. E., Downe, S., Cacciatore J., & Siassakos, D. (2016). From grief, guilt pain and stigma to hope and pride - a systematic review and meta-analysis of mixed-method research of the psychosocial impact of stillbirth. BMC Pregnancy Childbirth, 16, 9. doi: 10.1186/s12884-016-0800-8
Cacciatore, J., Erlandsson, K., & Radestad, I. (2013). Fatherhood and suffering: A qualitative exploration of Swedish men's experiences of care after the death of a baby. Int J Nurs Stud, 50(5), 664–670. doi:10.1016/j.ijnurstu.2012.10.014.
Centers for Disease Control & Prevention (2017). Facts about stillbirth. Retrieved from www.cdc.gov/ncbddd/stillbirth/facts.html#ref [accessed 14 September 2020].
Chen, F. H., Chen, S. L., & Hu, W. Y. (2015). Taiwanese women's experiences of lactation suppression after stillbirth. J Obstet Gynecol Neonatal Nurs, 44(4), 510–517. doi:10.1111/1552–6909.12724 doi: 10.1111/1552-6909.12724
Cooper, J. (1979). Reactions to stillbirth: ‘End this conspiracy of silence.’. Nurs Mirror, 149(23), 31–33.
DeGroot, J., & Vik, T. (2017). Disenfranchised grief following a traumatic birth. Journal of Loss and Trauma, 22(4), 346–356. doi: 10.1080/15325024.2017.1284519
Doka, K. J. (1989). Disenfranchised grief. In K. J.Doka (Ed.), Disenfranchised grief: Recognizing hidden sorrow (pp. 3–11). Lexington Books.
Doka, K. (1999). Disenfranchised grief. Bereavement Care, 18(3), 37–39. doi:10.1080/02682629908657467.
Ellis, A., Chebsey, C., Storey, C., Bradley, S., Jackson, S., Flenady, V., Heazell, A. E., & Siassakos, D. (2016). Systematic review to understand and improve care after stillbirth: A review of parents’ and healthcare professionals’ experiences. BMC Pregnancy Childbirth, 16, 16. doi:10.1186/s12884-016-0806-2.
Froen, J. F., Cacciatore, J., McClure, E. M., Kuti, O., Jokhio, A. H., Islam, M., & Shiffman, J. (2011). Stillbirths: Why they matter. The Lancet, 377(9774), 1353–1366. doi:10.1016/s0140-6736(10)62232-5.
Froen, J. F., Friberg, I. K., Lawn, J. E., Bhutta, Z. A., Pattinson, R. C., Allanson, E. R., Flenady V., McClure E.M., Franco L., Goldenberg R.L., Kinney M.V., Hopkins Leisher S., Pitt C., Islam M., Khera A., Dhaliwal L., Aggarwal N., Raina N., & Temmerman, M. (2016). Stillbirths: Progress and unfinished business. The Lancet, 387(10018), 574–586. doi:10.1016/s0140-6736(15)00818-1.
Gill, M., Bagshaw, S. M., McKenzie, E., Oxland, P., Oswell, D., Boulton, D., Niven D.J., Potestio M.L., Shklarov S., Marlett N & Stelfox, H. T. (2016). Patient and family member-led research in the intensive care unit: A novel approach to patient-centered research. PLoS One, 11(8), e0160947. doi:10.1371/journal.pone.0160947.
Gillis, C., Gill, M., Marlett, N., MacKean, G., GermAnn, K., Gilmour, L., Nelson G., Wasylak T., Nguyen S., Araujo E., Zelinksky S., & Gramlich, L. (2017). Patients as partners in enhanced recovery after surgery: A qualitative patient-led study. BMJ Open, 7(6), e017002. doi:10.1136/bmjopen-2017-017002.
Glaser, B. G., & Strauss, A. L. (1967). The discovery of grounded theory: Strategies for qualitative research. Aldine Atherton.
Granger, K. (2014). Death by social networking: The rising prominence of social media in the palliative care setting. BMJ Support Palliat Care, 4(1), 2–3. doi:10.1136/bmjspcare-2013-000607.
Hennink, M. M., Kaiser, B. N., & Marconi, V. C. (2017). Code saturation versus meaning saturation: How many interviews are enough? Qual Health Res, 27(4), 591–608. doi:10.1177/1049732316665344.
Lewis, E. (1976). The management of stillbirth: Coping with an unreality. The Lancet, 2(7986), 619–620. doi: 10.1016/S0140-6736(76)90680-2
Lisy, K., Peters, M. D., Riitano, D., Jordan, Z., & Aromataris, E. (2016). Provision of meaningful care at diagnosis, birth, and after stillbirth: A qualitative synthesis of parents’ experiences. Birth, 43(1), 6–19. doi:10.1111/birt.12217.
Marlett, N., Shklarov, S., Marshall, D., Santana, M. J., & Wasylak, T. (2015). Building new roles and relationships in research: A model of patient engagement research. Qual Life Res, 24(5), 1057–1067. doi:10.1007/s11136-014-0845-y.
Murphy, S., & Cacciatore, J. (2017). The psychological, social, and economic impact of stillbirth on families. Semin Fetal Neonatal Med, 22(3), 129–134. doi:10.1016/j.siny.2017.02.002.
Murphy, S. L. (2012). Finding the positive in loss: Stillbirth and its potential for parental empowerment. Bereavement Care, 31(3), 98–103. doi:10.1080/02682621.2012.740277.
Nuzum, D., Meaney, S., & O'Donoghue, K. (2018). The public awareness of stillbirth: An Irish population study. Bjog, 125(2), 246–252. doi:10.1111/1471-0528.14939.
Price, S. K., & El-Khoury, D. (2015). Applying theoretical frameworks to research in perinatal bereavement. In B.Black, P.Wright, R.Limbo, & E.Nieginski (Eds.), 17–32. Perinatal and pediatric bereavement in nursing and other health professions. Springer Publishing Company.
Root B.L., & Exline J.J. (2014). The role of continuing bonds in coping with grief: Overview and future directions. Death Studies, 38:1–8. doi:10.1080/07481187.2012.712608.
Rothaupt, J., & Becker, K. (2007). A literature review of western bereavement theory: From decathecting to continuing bonds. The Family Journal, 15(1), 6–15. doi: 10.1177/1066480706294031
Sather, M., Fajon, A. V., Zaentz, R., & Rubens, C. E. (2010). Global report on preterm birth and stillbirth (5 of 7): Advocacy barriers and opportunities. BMC Pregnancy Childbirth, 10 Suppl 1, S5. doi:10.1186/1471-2393-10-s1-s5.
Shklarov, S., Marshall, D. A., Wasylak, T., & Marlett, N. J. (2017). ‘Part of the team’: Mapping the outcomes of training patients for new roles in health research and planning. Health Expect. doi:10.1111/hex.12591.
Simmons, O. E., & Gregory, T. A. (2005). Grounded action: Achieving optimal and sustainable change. Historical Social Research / Historische Sozialforschung, 30(1 (111)), 140–156.
Smith, A. M. (1977). The abhorrence of stillbirth. The Lancet, 1(8025), 1315. doi: 10.1016/S0140-6736(77)91353-8
StatisticsCanada. (2014). Live births and fetal deaths (stillbirths), by place of birth (hospital and non-hospital). Canada, provinces and territories, annual, CANSIM (database). Retrieved from www5.statcan.gc.ca/cansim/a26?lang=eng&id=1024516 [accessed 14 September 2020].
Teram, E., Schachter, C. L., & Stalker, C. A. (2005). The case for integrating grounded theory and participatory action research: Empowering clients to inform professional practice. Qual Health Res, 15(8), 1129–1140. doi:10.1177/1049732305275882.
Young, J. (2018). Promoting evidence-based public health recommendations to support reductions in infant and child mortality: The role of national scientific advisory groups. In: Duncan, J.R., Byard, R.W. (Eds.). SIDS Sudden infant and early childhood death: The past, the present and thefuture. University of Adelaide Press.
