Erin Denney-Koelsch

Erin Denney-Koelsch
University of Rochester | UR

MD

About

15
Publications
1,381
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261
Citations

Publications

Publications (15)
Article
Outcomes 1. Describe the process of developing pediatric palliative care (PPC) learning objectives for adult-track physician fellows 2. Discuss findings of the AAHPM Pediatric Curriculum Work Group national survey highlighting the need for more community-based PPC resources and improved PPC education and competency building for adult hospice and pa...
Article
Outcomes 1. Describe 2 components of evidence-based clinical approaches to caring for parents facing life-limiting fetal conditions 2. List 3 roles and responsibilities of the expert perinatal palliative care coordinator within the healthcare system and with the family 3. Explain 2 barriers and strategies for perinatal palliative care advancement w...
Article
Background Families who learn that their unborn baby has a life-limiting fetal condition are often overwhelmed by this news, alongside navigating an unfamiliar healthcare system. A skilled perinatal palliative care coordinator (PPCC) can help these families, yet little is known about their function and roles. Aims This study sought to describe the...
Article
Objectives When parents are facing a life-limiting fetal condition (LLFC), decision making about prenatal and neonatal care is very stressful. To participate in successful shared decision making, interdisciplinary care teams need to understand factors that parents consider and the process by which they make decisions about care of their baby. Meth...
Article
While it is known that couples experience pregnancy differently from one another, the circumstance of continuing pregnancy after learning of a lethal fetal diagnosis has received little attention. This longitudinal, naturalistic study of 16 mothers and 14 spouses/partners aimed to describe pregnant couples’ responses and relationships in continued...
Article
Background: Perinatal palliative care (PPC) programs are proliferating nationwide, but little is known about their structure, process, or desired outcomes, to inform future program development. Objective: To explicate structure, processes, and outcomes of PPC programs, specifically how they coordinate care and manage goals of care meetings, as w...
Article
Significance: Lethal fetal diagnoses are made in 2% of all pregnancies. The pregnancy experience is certainly changed for the parents who choose to continue the pregnancy with a known fetal diagnosis but little is known about how the psychological and developmental processes are altered. Methods: This longitudinal phenomenological study of 16 mo...
Article
Background: Congenital anomalies account for 20% of neonatal and infant deaths in the United States. Perinatal palliative care is a recent addition to palliative care and is meant to meet the needs of families who choose to continue a pregnancy affected by a life-limiting diagnosis. Objective: To examine characteristics of programs and services...
Article
This article reports on qualitative research into the experience of couples who chose to continue their pregnancies after receiving a lethal fetal diagnosis, and to embrace the parenting of their baby in the shortened time they have. This analysis of interview data is part of a larger research project describing parents' experiences of continuing p...
Article
Full-text available
This longitudinal naturalistic study sought to describe parent experiences of ultrasounds during pregnancies with lethal fetal diagnoses (LFDs). We interviewed 16 mothers and 14 partners twice during pregnancy and twice after birth and death of their infant. Parents reported that ultrasound providers had a profound impact on their experiences with...
Article
Full-text available
Diagnosis of a lethal fetal diagnosis (LFD) early in pregnancy is devastating for parents. Those who choose to continue with the pregnancy report intense emotional reactions and inconsistent, often insensitive treatment by health care providers. This qualitative descriptive study sought to clarify the experiences and needs of families in order to d...

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