End of life and bereavement care on a tertiary neonatal unit: a parental survey
Keywords:
neonatal, death, baby loss, prenatal, bereavement, end-of-life, palliativeAbstract
AbstractThis article reports on a small qualitative review of the impact on families when a baby dies on a neonatal unit. The study aim was to see how the service that is provided in a tertiary neonatal unit could be improved in order to help others in the same situation. This led to me carrying out a postal survey of parents who had had a baby die on the neonatal unit at the Liverpool Women’s Hospital in order to gain insight into the care they received and focus on continuing the good aspects of care while improving the areas that needed some work. To maintain high standards of care reviews of practice must happen to encourage a culture of learning and feedback.
References
Aho, A. L., Tarkka, M.-T., Astedt-Kurki, P., & Kaunonen, M. (2009). Fathers’ experience of social support after the death of a child. American Journal of Men's Health, 3(2), 93–103. doi: 10.1177/1557988307302094
Boyle, F. M., Mutch, A. J., Barber, E. A., Carroll, C., & Dean, J. H. (2015). Supporting parents following pregnancy loss: A cross-sectional study of telephone peer supporters. BMC Pregnancy Childbirth, 1, 291. doi: 10.1186/s12884-015-0713-y
Brosig, C. L., Pierucci, R. L., Kupst, M. J., & Leuthner, S. R. (2007). Infant end-of-life care: The parents’ perspective. Journal of perinatology: Official Journal of the California Perinatal Association, 27(8), 510–516. doi: 10.1038/sj.jp.7211755
De Rouck, S., & Leys, M. (2009). Information needs of parents of children admitted to a neonatal intensive care unit: A review of the literature (1990-2008). Patient Education and Counseling, 76(2), 159–173. doi: 10.1016/j.pec.2009.01.014
Engler, A. J., Cusson, R. M., Brockett, R. T., Cannon-Heinrich, C., Goldberg, M. A., West, M. G., & Petow, W. (2004). Neonatal staff and advanced practice nurses’ perceptions of bereavement/end-of-life care of families of critically ill and/or dying infants. American Journal of Critical Care, 13(6), 489–498. doi: 10.4037/ajcc2004.13.6.489
Garstang, J., Griffiths, F., & Sidebotham, P. (2014). What do bereaved parents want from professionals after the sudden death of their child: A systematic review of the literature. BMC Pediatrics, 14, 269. doi: 10.1186/1471-2431-14-269
Henley, A., & Schott, J. (2008). The death of a baby before, during or shortly after birth: Good practice from the parents’ perspective. Seminars in Fetal & Neonatal Medicine, 13(5), 325–328. doi: 10.1016/j.siny.2008.03.003
Hutti, M. H., Myers, J. A., Hall, L. A., Polivka, B. J., White, S., Hill, J., … Kloenne, E. (2018). Predicting need for follow-up due to severe anxiety and depression symptoms after perinatal loss. Journal of Obstetric, Gynecologic. & Neonatal Nursing, 47(2), 125–136. doi: 10.1016/j.jogn.2018.01.003
Janvier, A., Farlow, B., Verhagen, E., & Barrington, K. (2017). End-of-life decisions for fragile neonates: Navigating between opinion and evidence-based medicine. Archives of Disease in Childhood: Fetal & Neonatal, 102(2), F96–97. doi: 10.1136/archdischild-2016-311123
Koopmans, L., Wilson, T., Cacciatore, J., & Flenady, V. (2013). Support for mothers, fathers and families after perinatal death. Cochrane Database Systematic Review, 19(6), CD000452.
Leon, I. (1992). The psychoanalytic conceptualization of perinatal loss: A multidimensional model. American Journal of Psychiatry, 149(11), 1464–1472. doi: 10.1176/ajp.149.11.1464
Mancini, A. (2012). The place for palliative care in neonatal care. Journal of Neonatal Nursing, 18, 86–87. doi: 10.1016/j.jnn.2012.01.011
McHaffie, H. E., Laing, I. A., & Lloyd, D. J. (2001). Follow up care of bereaved parents after treatment withdrawal from newborns. Archives of Disease in Childhood: Fetal & Neonatal, 84(2), F125–128. doi: 10.1136/fn.84.2.F125
Obeidat, H., Bond, E., & Callister, L. (2009). The parental experience of having an infant in the newborn intensive care unit. The Journal of Perinatal Education, 18(3), 23–29. doi: 10.1624/105812409X461199
Shelkowitz, E., Vessella, S. L., O’Reilly, P., Tucker, R., & Lechner, B. E. (2015). Counseling for personal care options at neonatal end of life: A quantitative and qualitative parent survey. BMC Palliative Care, 14, 70. doi: 10.1186/s12904-015-0063-6
Together for Short Lives. (2017). A palliative care pathway for babies with palliative care needs. Retrieved from www.togetherforshortlives.org.uk/resource/perinatal-pathway-babies-palliative-care-needs [accessed 12 January 2020].
Vance, J. C., Boyle, F. M., Najman, J. M., & Thearle, M. J. (2002). Couple distress after sudden infant or perinatal death: A 30-month follow up. The Journal of Paediatrics and Child Health, 38(4), 368–372. doi: 10.1046/j.1440-1754.2002.00008.x
Wender, E. (2012). Supporting the family after the death of a child. Pediatrics, 130(6), 1164–1169. doi: 10.1542/peds.2012-2772
Williams, C., Munson, D., Zupancic, J., & Kirpalani, H. (2008). Supporting bereaved parents: Practical steps in providing compassionate perinatal and neonatal end-of-life care. A North American perspective. Seminars in Fetal & Neonatal Medicine, 13(5), 335–340. doi: 10.1016/j.siny.2008.03.005
