Clinician perspectives of barriers in perinatal palliative care

MCN The American Journal of Maternal/Child Nursing

Volumn 40, Issue 1, 2015, Pages 44-50

  Wool, Charlotte ^a  

^a YORK COLLEGE OF PENNSYLVANIA   (United States)

Author keywords

Advanced practice; Hospice and palliative care nursing; Palliative care; Perinatal care

Indexed keywords

CROSS-SECTIONAL STUDY; DECISION MAKING; FEMALE; HEALTH PERSONNEL ATTITUDE; HUMAN; MALE; NEWBORN; NURSE; PALLIATIVE THERAPY; PERINATAL CARE; PREGNANCY; PSYCHOLOGY; QUESTIONNAIRE; SOCIAL SUPPORT; STANDARDS;

ATTITUDE OF HEALTH PERSONNEL; CROSS-SECTIONAL STUDIES; DECISION MAKING; FEMALE; HUMANS; INFANT, NEWBORN; MALE; NURSES; PALLIATIVE CARE; PERINATAL CARE; PREGNANCY; SOCIAL SUPPORT; SURVEYS AND QUESTIONNAIRES;

EID: 84919489004     PISSN: 0361929X     EISSN: 15390683     Source Type: Journal    
DOI: 10.1097/NMC.0000000000000093     Document Type: Article

References (39)

1. American College of Obstetricians and Gynecologists, Committee on Ethics, & American Academy of Pediatrics , Committee on Bioethics. (2011). Maternal-fetal intervention and fetal care centers, Pediatrics, 128(2), e473-e478. doi:10.1542/peds.2011-1570
2. Baggs, J. G. (2005). Partnerships and collaboration: What skills are needed Online Journal of Issues in Nursing, 10(1), 1. doi:10.3912/OJIN.Vol10No01ManOS
3. Branchett, K., & Stretton, J. (2012). Neonatal palliative and end of life care: What parents want from profes sionals. Journal of Neonatal Nursing, 18(2), 40-44. doi:10.1016/j.jnn.2012.01.009
4. Brinchmann, B. S., Førde, R., & Nortvedt, P. (2002). What matters to the parents A qualitative study of paren ts' experiences with lifeand-death decisions concerning their premature infants. Nursing Ethics, 9(4), 388-404. doi:10.1191/0969733002ne523oa
5. Brosig,C. L, Pierucci, R. L., Kupst, M. J., & Leuthner, S. R. (2007). Infant end-of-life care: The parents' perspective. Journal of Perinatology: Offi cial Journal of the California Perinatal Association, 27(8), 510-516. doi:10.1038/sj.jp.7211755.
6. Calhoun, B. C., Napolitano, P., Terry, M., Bussey, C., & Hoeldtke, N. J. (2003). Perinatal hospice. Comprehensive care for the family of the fetus with a lethal condition. The Journal of Reproductive Medicine, 48(5), 343-348.
7. Capitulo, K. L. (2005). Evidence for healing interventions with perinatal bereavement. MCN. The American Journal of Maternal Child Nursing, 30(6), 389-396.
8. Carter, B. (2004). Comfort care principles for the high-risk neonate. NeoReviews, 5(11), e484. doi:10.1542/neo.5-11-e484
9. Choosing Thomas-Inside a family's decision to let their son live, if only for a brief time. (n.d.). Retrieved from www.youtube.com/watchv=ToNWquoXqJI
10. Cǒté-Arsenault, D., & Denney-Koelsch E. (2011). " My baby is a person" : Parents' experiences with life-threatening fetal diagnosis. Journal of Palliative Medicine, 14(12), 1302-1308. doi:10.1089/jpm.2011.0165
11. Davies, B., Sehring, S. A., Partridge, J. C., Cooper, B. A., Hughes, A., Philp, J. C.,.., Kramer, R. F. (2008). Barriers to palliative care for children: Perceptions of pediatric health care providers. Pediatrics, 121(2), 282-288. doi:10.1542/peds.2006-3153
12. Feudtner, C., & Munson, D. (2009). The ethics of perinatal palliative care. In V. Ravitsky, A. Fiester, & A. L. Caplan (Eds.), The Penn Center guide to bioethics. New York: Springer.
13. Field A. 2009 Discovering statistics using SPSS (3rd ed). Washington DC Sage Publications.
14. Field, M., & Behrman, R. (2003). When children die: Improving palliative and end-of-life care for children and their families. Washington, DC: National Academies Press.
15. Garcia, J., Bricker, L., Henderson, J., Martin, M. A., Mugford, M., Nielson, J., &Roberts, T. (2002). Women's views of pregnancy ultrasound: A systematic review. Birth, 29(4), 225-250. doi:10.1046/j.1523-536X.2002.00198.x
16. Goggin, M. (2012). Parents perceptions of withdrawal of life support treatment to newborn infants. Early Human Development, 88(2), 79-82. doi:10.10/1016/j.earlhumdev.2011.12.002
17. Hedrick, J. (2005). The lived experience of pregnancy while carrying a child with a known, nonlethal congenital abnormality. Journal of Obstetric, Gynecologic, and Neonatal Nursing: JOGNN/NAACOG, 34(6), 732-740. doi:10.1177/0884217505282020
18. Himelstein, B. P., Hilden, J. M., Boldt, A. M., & Weissman, D. (2004). Pediatric palliative care. The New England Journal of Medicine, 350(17), 1752-1762. doi:10.1056/NEJMra030334
19. Janvier, A., Farlow, B., & Wilfond, B. S. (2012). The experience of families with children with trisomy 13 and 18 in social networks. Pediatrics, 130(2), 293-298. doi:10.1542/peds. 2012-0151
20. Kain, V., Gardner, G., & Yates, P. (2009). Neonatal palliative care attitude scale: Development of an instrument to measure the barriers to and facilitators of palliative care in neonatal nursing. Pediatr ics, 123(2), e207-e213. doi:10.1542/peds.2008-2774
21. Kuebelbeck, A. (2014a). Media coverage. Retrieved from http://perinatalhospice. org
22. Kuebelbeck, A. (2014b). Resources for caregivers. Retrieved from www. perinatalhospice.org/Resources-for-caregivers.html
23. Leuthner, S., & Jones, E. L. (2007). Fetal concerns program: A model for perinatal palliative care. MCN: The American Journal of Maternal Child Nursing, 32(5), 272-278.
24. Levy, M. M. (2004). Caring for the caregiver. Critical Care Clinics, 20(3), 541-547, xi.
25. Matthews, T. J., & MacDorman, M. F. (2013). Infant mortality statistics from the 2010 period linked birth/infant death data set. National Vital Statistics Reports: From the Centers for Disease Control and Prevention, National Cen ter for Health Statistics, National Vital Statistics System, 62(8), 1-26. Retrieved from www.cdc.gov/nchs/data/nvsr/nvsr62/nvsr62-08.pdf
26. Mertler, C. A., & Vannatta, R. A. (2005). Advanced and multivariate statistical methods (3rd ed.). Glendale, CA: Pyrczak Publishing.
27. Moro, T. T., Kavanaugh, K. Savage, T. A., Reyes, M. R., Kimura, R. E., & Bhat, R. (2011). Parent decision making for life support for extreme ly premature infants: From the prenatal through end-of-life period. The Journal of Perinatal & Neonatal Nursing, 25(1), 52-60. doi:10.1097/JPN.0b013e31820377e5
28. National Consensus Project for Quality Palliative Care. (2009). Clinical practice guidelines for quality palliative care (2nd ed.). Pittsburgh, PA: Author. Retrieved from www.nationalconsensusproject.org/guideline.pdf
29. Ramer-Ch rastek, J., & Thygeson, M. V. (2005). A perinatal hospice for an unborn child with a life-limiting condition. International Journal of Palliative Nursing, 11(6), 274-276.
30. Rushton, C. H., Reder, E., Hall, B., Comello, K., Sellers, D. E., & Hutton, N. (2006). Interdisciplinary interventions to improve pediatric palliative care and reduce health care professional suffering, Journal of Palliative Medicine, 9( 4), 922-933. doi:10.1089/jpm.2006.9.922
31. Schiffman, J. D., Chamberlain, L. J., Palmer, L., Contro, N., Sourkes, B., & Sectish, T. C. (2008). Introduction of a pediatric palliative care curriculum f or pediatric residents. Journal of Palliative Medicine, 11(2), 164-170. doi:10.1089/jpm.2007.0194
32. Statham, H., Solomou, W., & Chitty, L. (2000). Prenatal diagnosis of fetal abnormality: Psychological effects on women in low-risk pregnancies. Bailliere's Best Practice &Research. Clinical Obstetrics & Gynaecology, 14(4), 731-747. doi:10.1053/beog.2000.0108
33. Sumner, L. H., Kavanaugh, K., & Moro, T. (2006). Extending palliative care into Pregnancy and the immediate newborn period: State of the practice of perinatal palliative care. The Journal of Perinatal & Neonatal Nursing, 20(1), 113-116.
34. Tubbs-Cooley, H. L., Santucci, G., Kang, T. I., Feinstein, J. A., Hexem, K. R., & Feudtner, C. (2011). Pediatric nurses' individual and group assessments of palliative, end-of-life, and bereavement care. Journal of Pallia tive Medicine, 14(5), 631-637. doi:10.1089/jpm.2010.0409
35. Wilkinson, S., Perry, R., Blanchard, K., & Linsell, L. (2008). Effectiveness of a three-day communication skills course in changing nurse s' communication skills with cancer/palliative care patients: A randomised controlled trial. Palliative Medicine, 22(4), 365-375. doi:10.1177/0269216308090770
36. 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 Fet al and Neonatal Medicine, 13(5), 335-340. doi:10.1016/j.siny.2008.03.005
37. Wool, C. (2013a). Clinician confi dence and comfort in providing perinatal palliative care. Journal of Obstetric, Gynecologic, and Neon atal Nursing, 42(1), 48-58. doi:10.1111/j.1552-6909.2012.01432.x
38. Wool, C. (2013b). State of the science on perinatal palliative care. Journal of Obstetric, Gynecologic, and Neonatal Nursing, 42(3), 372-382. doi:10.1111/1552-6909.12034
39. Wool, C., & Northam, S. (2011). The Perinatal Palliative Care Perceptions and Barriers Scale Instrument©: Development and validation. Advances in Neonatal Care: Offi cial Jo urnal of the National Association of Neonatal Nurses, 11(6), 397-403. doi:10.1097/ANC.0b013e318233809a