The online version of this article (doi:10.1186/s12904-015-0063-6) contains supplementary material, which is available to authorized users.
The authors declare that they have no competing interests.
ES, SV, PO and BL contributed to the conception and design, ES and BL contributed to the acquisition of data, ES, RT, SV, PO and BL contributed to the analysis and interpretation of the data. All authors contributed to the drafting and critical revision of the manuscript.
The death of a newborn is a traumatic life changing event in the lives of parents. We hypothesized that bereaved parents of newborn infants want to have choices in the personal care of their infant at the end of life.
Parents who had suffered a perinatal or neonatal loss between 1 and 6 years before the survey in a regional level IV neonatal intensive care unit (NICU) and associated labor and delivery room were invited to participate. Parents chose between an online survey, paper survey or telephone interview. The survey included multiple choice and open ended questions.
Parents prefer multiple options for the personal care of their infant at the end of life. Emergent themes were need for guidance by the medical team, memory making, feeling cared for and respected by staff, and regrets related to missed opportunities.
While parents differ in their preferences in utilizing specific personal care options for their infant’s end of life, they share a common preference for being presented with multiple options to choose from and in being guided and supported by healthcare providers, while being afforded the opportunity to make memories with their infant by bonding with and parenting them.
Additional file 1: LDR survey and NICU survey. Survey questions and response options. (PDF 326 kb)12904_2015_63_MOESM1_ESM.pdf
WHO Global Health Observatory Data Repository http://apps.who.int/gho/data/view.main.CM1320R. 2015:accessed 2-5-15
Youngblut JM, Brooten D, Cantwell GP, del Moral T, Totapally B. Parent health and functioning 13 months after infant or child NICU/PICU death. Pediatr. 2013;132(5):e1295–1301. CrossRef
Shaw RJ, St John N, Lilo E, Jo B, Benitz W, Stevenson DK, et al. Prevention of traumatic stress in mothers of preterms: 6-month outcomes. Pediatr. 2014;134(2):e481–488. CrossRef
Lasiuk GC, Comeau T, Newburn-Cook C. Unexpected: an interpretive description of parental traumas' associated with preterm birth. BMC Pregnancy Childbirth. 2013;13 Suppl 1:S13. PubMed
Meyer EC, Ritholz MD, Burns JP, Truog RD. Improving the quality of end-of-life care in the pediatric intensive care unit: parents' priorities and recommendations. Pediatr. 2006;117(3):649–57. CrossRef
Meadow J. LaW: Neonatal bioethics: The moral challenges of medical innovation. Baltimore: Johns Hopkins University Press; 2006.
Gohlish MC. Stillbirth. Midwife Health Visit Community Nurse. 1985;21(1):16–22. PubMed
Loewy J, Stewart K, Dassler AM, Telsey A, Homel P. The effects of music therapy on vital signs, feeding, and sleep in premature infants. Pediatr. 2013;131(5):902–18. CrossRef
Williams C, Cairnie J, Fines V, Patey C, Schwarzer K, Aylward J, et al. Construction of a parent-derived questionnaire to measure end-of-life care after withdrawal of life-sustaining treatment in the neonatal intensive care unit. Pediatr. 2009;123(1):e87–95. CrossRef
- Counseling for personal care options at neonatal end of life: a quantitative and qualitative parent survey
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