Communication Challenges in Neonatal Encephalopathy

Lemmon, Monica E.; Donohue, Pamela; Parkinson, Charlamaine; Northington, Frances J.; Boss, Renee D.

doi:10.1542/peds.2016-1234

Cited by 65 publications

(76 citation statements)

References 30 publications

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“…Parents often view HCPs with whom they have the most daily contact, especially bedside nurses, as their primary source of information (Lemmon, Donohue, Parkinson, Northington, & Boss, ). Bedside HCPs receive many questions from parents and understand the importance of deferring certain questions to specialists.…”

Section: Discussionmentioning

confidence: 99%

Factors complicating the informed consent process for whole exome sequencing in neonatal and pediatic intensive care units

Diamonstein¹

2019

Journal of Genetic Counseling

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Whole exome and whole genome sequencing (WES/WGS) is increasingly utilized in inpatient settings such as neonatal and pediatric intensive care units (ICU), but no research has explored the process of informed consent in this setting. My experience as an inpatient genetic counselor has illuminated factors unique to the ICU that may threaten elements of informed consent such as voluntariness, disclosure, understanding, and capacity. I present three cases that exemplify elements complicating consent counseling for WES/WGS in the ICU, including the emotional state of the parents, involvements of other healthcare providers, environmental distractions and competing clinical priorities. I offer strategies to navigate these factors based on my experience.

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Section: Discussionmentioning

confidence: 99%

Factors complicating the informed consent process for whole exome sequencing in neonatal and pediatic intensive care units

Diamonstein¹

2019

Journal of Genetic Counseling

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“…This reflects data from parents of children with other critical illnesses, who report that this "big picture" information is very valuable to families but is often missing from physician counselling. 24 Second, parents were clear that they need more than just information from physicians. Parents whose fetus or child has a life-threatening diagnosis are profoundly stressed and distressed.…”

Section: Discussionmentioning

confidence: 99%

Communication and decision-making regarding children with critical cardiac disease: a systematic review of family preferences

et al. 2018

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Critical heart disease in the pediatric population is associated with high morbidity and mortality. Research around the most effective communication and decision-making strategies is lacking. This systematic review aims to summarise what is known about parent preference for communication and decision-making in children with critical heart disease. Database searches included key words such as family, pediatric heart disease, communication, and decision-making. A total of 10 studies fit our inclusion criteria: nine were qualitative studies with parent interviews and one study was quantitative with a parent survey. We found three main themes regarding physician-parent communication and decision-making in the context of paediatric heart disease: (1) amount, timing, and content of information provided to parents; (2) helpful physician characteristics and communication styles; and (3) reinforcing the support circle for families.

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“…Existing data suggest that parents may feel burdened by the responsibility of translating medical information to their partner or other family members. 22 Although not equivalent to bedside presence, one potential adaptation to increase parent participation amidst visitation restrictions is using technology to facilitate virtual participation of parents in rounds, major conversations with the team, and care at the bedside. The degree to which NICUs have implemented these types of programs is unclear.…”

Section: Inpatient Care: Visitation Policies Developmental Care Andmentioning

confidence: 99%

Beyond the First Wave: Consequences of COVID-19 on High-Risk Infants and Families

et al. 2020

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The novel coronavirus disease 2019 (COVID-19) pandemic is affecting care for high-risk newborns in ways that will likely be sustained beyond the initial pandemic response. These novel challenges present an urgent imperative to understand how COVID-19 impacts parent, family, and infant outcomes. We highlight three areas that warrant targeted attention: (1) inpatient care: visitation policies, developmental care, and communication practices; (2) outpatient care: high-risk infant follow-up and early intervention programs; and (3) parent psychosocial distress: mental health, social support, and financial toxicity. Changes to care delivery in these areas provide an opportunity to identify and implement novel strategies to provide family-centered care during COVID-19 and beyond. Key Points

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Communication Challenges in Neonatal Encephalopathy

Abstract: BACKGROUND: Families must process complex information related to neonatal encephalopathy and therapeutic hypothermia.

Cited by 65 publications

References 30 publications

Factors complicating the informed consent process for whole exome sequencing in neonatal and pediatic intensive care units

Factors complicating the informed consent process for whole exome sequencing in neonatal and pediatic intensive care units

Communication and decision-making regarding children with critical cardiac disease: a systematic review of family preferences

Beyond the First Wave: Consequences of COVID-19 on High-Risk Infants and Families

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