Navigating Infant Death from Life-Limiting Congenital Anomaly: A Classic Grounded Theory Study
Main Article Content
Abstract
The purpose of this classic grounded theory study was to explore how parents experience the expected death of an infant from a life limiting congenital anomaly. These anomalies are the leading cause of death of infants in the United States. Death typically occurs in intensive care units with limited access to adequate palliative/end-of-life care. An extensive knowledge gap about the experience of these parents exists. The grounded theory Navigating Infant Death from Life-Limiting Congenital Anomaly contains three stages and two cutting points. The first stage is living in innocence which ends with the first cutting point of getting the bad news. The second stage i parenting in the new reality which ends with the second cutting point, death of the baby. The final stage of the theory is going on. This new theory has implications for nursing/health care professionals in practice and research. This study was conducted as the dissertation while the author was a student in the doctoral program at West Virginia University.
Downloads
Article Details
The Grounded Theory Review is an open-access journal, which means that all content is freely available without charge to the user or his/her institution. Users are allowed to read, download, copy, distribute, print, search, or link to the full texts of the articles in this journal without asking prior permission from the publisher or the author. This is in accordance with the international Budapest Open Access Initiative (BOAI) definition of open access.
References
American Academy of Pediatrics (2013). Pediatric palliative care and hospice care commitments, guidelines and recommendations. Pediatrics, 132 (5), 966-972. doi:10.1542/peds.2013-2731
Brosig, C., Pierucci, R., Kupst, M. & Leuthner, S. (2007). Infant end-of-life care: The parents’ perspective. Journal of Perinatology, 27, 510-516.doi:10.1038/sj.jp7211755
Caitlin, A. & Carter, B. (2002). State of the art. Creation of a neonatal end-of-life palliative care protocol. Journal of Perinatology, 22(3),184-195. doi:10.1038/sj/jp/7210687
Carter, B. S. & Bhatia, J. (2001). Comfort/palliative care guidelines for neonatal practice: Development and implementation in an academic medical center. Journal of Perinatology, 21(5), 279-283. Retrieved from
http://www.nature.com/jp/journal/v21/n5/pdf/7210582a.pdf
Catlin, A. Brandon, D, Wool, C., & Mendes, J. (2015). Palliative and end-of-life care for newborns and infants: Position Statement #3063. Retrieved from
http://nann.org/uploads/About/PositionPDFS/1.4.5_Palliative%20and%20End%20of
%20Life%20Care%20for%20Newborns%20and%20Infants.pdf
Dahlen, C. (Ed.) 2013. Clinical practice guideline for quality palliative care, 3rd ed. Pittsburgh, PA. National Consensus Project for Quality Palliative Care. Retrieved from
https://www.nationalcoalitionhpc.org/wp-content/uploads/2017/04/NCP_Clinical_Practice_Guidel nes_3rd_Edition.pdf
De Lisle-Porter, M. & Podruchny, A. (2009). The dying neonate: Family-centered end-of-life care. Neonatal Network, 28(2), 75-83. doi:10.1891/0730 -0832.28.2.75
Feudtner, C., Christakis, D. A., Zimmerman, F. J., Muldoon, J. H., Neff, J. M., & Koepsell, T.
D. (2002). Characteristics of deaths occurring in children's hospitals: Implications for supportive care services. Pediatrics, 109(5), 887-893. doi:10.1542/peds.109.5.887
Friebert, S. & Huff, S. (2009). NHPCO’s pediatric standards: A key step in advancing care for America’s children. NewsLine. Retrieved from http://www.nhpco.org/files/public/quality/Peds-Standards_article_NL-0209.pdf
Gale, G., & Brooks, A. (2006). Implementing a palliative care program in a newborn intensive care unit. Advances in Neonatal Care, 6(1), 37-53.doi:10.1016/j.adnc.2005.11.004
Glaser, B. (1978). Theoretical sensitivity: Advances in the methodology of grounded theory. Mill Valley, CA: The Sociology Press.
Glaser, B. (1998). Doing grounded theory: Issues and discussions. Mill Valley, CA: Sociology Press.
Glaser, B. & Strauss, A. (1965). Awareness of dying. Mill Valley, CA: Sociology Press.
Glaser, B. & Strauss, A. (1968). Time for dying. Mill Valley, CA: Sociology Press.
Kain, V. (2011). Exploring the barriers to palliative care practice in neonatal nursing: A focus group study. Neonatal, Paediatric and Child Health Nursing, 14(1), 9-14. Retrieved from www.npchn.com/
Kendall, A. & Guo, W. (2008). Evidence-based neonatal bereavement care. Newborn and Infant Reviews, 8(3), 131-135. Retrieved from https://www-sciencedirect com.marshall.idm.oclc.org/journal/newborn-and-infant nursing-reviews
Lathrop, A. & VandeVusse, L. (2011). Continuity and change in mothers’ narrative of perinatal hospice. Journal of Perinatal & Neonatal Nursing, 25(1), 21-31.
Leuthner, S. (2004). Palliative care of the infant with lethal anomalies. Pediatric Clinics of North America, 51(3), 747-759. doi:10.1016/j.pcl.2004.01.006
Leuthner, S., Boldt, A., & Kirby, R. (2004). Where infants die: Examination of place of death and hospice/home health care options in the state of Wisconsin. Journal of Palliative Medicine, 7(2), 269-277. doi:10.1089/109662104773709396
National Association of Neonatal Nurses (NANN). (2015). Palliative and end-of-life care for newborns and infants: Position statement #3063. Retrieved from http://nann.org/uploads/About/PositionPDFS/1.4.5_Palliative%20and%20End%20of%20Life%20Care%20for%20Newborns%20and%20Infants.pdf
National Hospice and Palliative Care Organization (NHPCO). (2001). A call for change: Recommendations to improve the care of children living with life-threatening conditions. Retrieved from www.nhpco.org/files/public/ChIPPSCallforChange.pdf
Parkes, C. (1998). Bereavement in adult life. British Medical Journal, 316 (7134), 1-9. doi:10.1136/bmj.316.7134.856
Rempel, G. & Harrison, M. (2007). Safeguarding precarious survival: Parenting children who have life-threatening heart disease. Qualitative Health Research, 17(6), 824-837. doi:10.1177/1049732307303164
Tan, J., Docherty, S., Barfield, R., & Brandon, D. (2012). Addressing parental bereavement support needs at the end of life for infants with complex chronic conditions. Journal of Palliative Medicine, 15(5), 579-584. doi:10.1089/jpm.2011.0357
Widger, K., Neow, H., Rapoport, A., Chalifoux, M., & Tanuseputro, P. (2017). Children’s end-of-life health care use and cost. Pediatrics, 139 (4), 1-9.doi:10.1542/peds.2016-2956
Worden, J. (2002). Grief counseling and grief therapy: A handbook for the mental health practitioner, 3rd ed. New York, NY: Springer. World Health Organization (2018). Distribution of cause of death among children aged < 5years: Congenital anomalies. Retrieved from http://apps.who.int/gho/data/view.main.CM3002015 ORLD-CH15?lang=en
Wright,V., Prasun, M.A., & Hilgenberg, C. (2011). Why is end-of-life care sporadic? A quantitative look at the barriers and facilitators of providing end-of-life care in the neonatal intensive care unit. Advances in Neonatal Care, 11(1), 29-36. doi:10.1097/ANC.0b013e3182085642
Xu, I., Murphy, S.L. Kochanek, M.A. Batian, B. & Arias, E. (2018). Deaths: Final data for 2016. National Vital Statistics Report 67 (5). Hyattsville, MD: National Center for Health Statistics. Retrieved from https://www.cdc.gov/nchs/data/nvsr/nvsr67/nvsr67_05 .pdf
Zwerdling, T., Davies, S., Lazar, L., Crawford, B., Tucker, L., Boughner, A. & Richter-Beck, L. (2000). Unique aspects of caring for dying children and their families. American Journal of Hospice and Palliative Care, 17(5), 305-311. doi:10.1177/104990910001700507