End-of-Life Care in the Neonatal Intensive Care Unit: Experiences of Staff and Parents

Cortezzo, DonnaMaria E.; Sanders, Marilyn R.; Brownell, Elizabeth A.; Moss, Kerry

doi:10.1055/s-0034-1395475

Cited by 28 publications

(18 citation statements)

References 34 publications

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“…24 Siblings may be affected by how their parents engage them, allow them to see/hold/touch their ill siblings, and even participate in their care, 25,26 although few evidence-based bereavement interventions have been published. [27][28][29] Physical Aspects of Care…”

Section: Family Copingmentioning

confidence: 99%

Pediatric Palliative Care: Current Evidence and Evidence Gaps

Miller¹,

Levy²,

Linebarger³

et al. 2015

The Journal of Pediatrics

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Section: Family Copingmentioning

confidence: 99%

Pediatric Palliative Care: Current Evidence and Evidence Gaps

Miller¹,

Levy²,

Linebarger³

et al. 2015

The Journal of Pediatrics

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“…The importance of memory making with their infant is not only one of the four major themes that emerged in our family interviews, but missed opportunities to make additional memories was also the predominant component of parental wishes and regrets. Others have also shown memory making to be of utmost importance to families at the end of their infant’s life [ 13 , 18 ]. Nonetheless, over a fourth of patients did not receive counseling on the personal care options available to their infant, and almost two thirds of those who didn’t would have appreciated receiving counseling.…”

Section: Discussionmentioning

confidence: 99%

“…Furthermore, a prominent theme for parents after stillbirth is “making irretrievable moments precious” [ 12 ]. At their infants’ end of life, families consider memory making to be of central importance [ 13 ]. Memory making is extremely important to families who suffer a stillbirth and it is important to them to have staff encourage them and offer choices [ 14 ].…”

Section: Introductionmentioning

confidence: 99%

Counseling for personal care options at neonatal end of life: a quantitative and qualitative parent survey

et al. 2015

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BackgroundThe 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.MethodsParents 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.ResultsParents 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.ConclusionWhile 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.Electronic supplementary materialThe online version of this article (doi:10.1186/s12904-015-0063-6) contains supplementary material, which is available to authorized users.

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“…The immature physiology of the infant most likely inhibits obvious symptom manifestations. However, many parents perceive that their infant is uncomfortable during the dying process (Cortezzo, Sanders, Brownell, & Moss, 2015). Parents are distressed by physical symptoms such as unpleasant noises, color changes, and gasping.…”

Section: Introductionmentioning

confidence: 99%

A qualitative study of nurse observations of symptoms in infants at end-of-life in the neonatal intensive care unit

Fortney

Steward

2017

Intensive and Critical Care Nursing

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Objectives Assessment and management of symptoms exhibited by infants can be challenging, especially at the end-of-life, because of immature physiology, non-verbal status, and limited symptoms assessment tools for staff nurses to utilize. This study explored how nurses observed and managed infant symptoms at the end-of-life in a neonatal intensive care unit. Research Methodology/Design This was a qualitative, exploratory study utilizing semi-structured face-to-face interviews, which were tape-recorded, transcribed verbatim, and then analyzed using the Framework Approach. Setting The sample included 14 staff nurses who cared for 20 infants who died at a large children’s hospital in the Midwestern United States. Main Outcome Measures Nurses had difficulty recalling and identifying infant symptoms. Barriers to symptom identification were discovered based on the nursing tasks associated with the level of care provided. Results Three core concepts emerged from analyses of the transcripts: Uncertainty, Discomfort, and Chaos. Nurses struggled with difficulties related to infant prognosis, time of transition to end-of-life care, symptom recognition and treatment, lack of knowledge related to various cultural and religious customs, and limited formal end-of-life education. Conclusion Continued research is needed to improve symptom assessment of infants and increase nurse comfort with the provision of end-of-life care in the neonatal intensive care unit.

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End-of-Life Care in the Neonatal Intensive Care Unit: Experiences of Staff and Parents

Cited by 28 publications

References 34 publications

Pediatric Palliative Care: Current Evidence and Evidence Gaps

Pediatric Palliative Care: Current Evidence and Evidence Gaps

Counseling for personal care options at neonatal end of life: a quantitative and qualitative parent survey

A qualitative study of nurse observations of symptoms in infants at end-of-life in the neonatal intensive care unit

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