First name
Annie
Last name
Janvier

Title

Personalized communication with parents of children born at less than 25 weeks: Moving from doctor-driven to parent-personalized discussions.

Year of Publication

2021

Number of Pages

151551

Date Published

2021 Nov 11

ISSN Number

1558-075X

Abstract

<p>Communication with parents is an essential component of neonatal care. For extremely preterm infants born at less than 25 weeks, this process is complicated by the substantial risk of mortality or major morbidity. For some babies with specific prognostic factors, the majority die. Although many of these deaths occur after admission to the intensive care unit, position statements have focused on communication during the prenatal consultation. This review takes a more comprehensive approach and covers personalized and parent-centered communication in the clinical setting during three distinct yet inter-related phases: the antenatal consultation, the neonatal intensive care hospitalization, and the dying process (when this happens). We advocate that a 'one-size-fits-all' communication model focused on standardizing information does not lead to partnerships. It is possible to standardize personalized approaches that recognize and adapt to parental heterogeneity. This can help clinicians and parents build effective partnerships of trust and affective support to engage in personalized decision-making. These practices begin with self-reflection on the part of the clinician and continue with practical frameworks and stepwise approaches supporting personalization and parent-centered communication.</p>

DOI

10.1016/j.semperi.2021.151551

Alternate Title

Semin Perinatol

PMID

34893335

Title

The experience of parents with children with myelomeningocele who underwent prenatal surgery.

Year of Publication

2018

Date Published

2018 Nov 18

ISSN Number

1875-8894

Abstract

<p><strong>BACKGROUND: </strong>Prenatal surgery for myelomeningocele (MMC) has been demonstrated to have benefits over postnatal surgery. Nevertheless, prenatal surgery requires a significant emotional, physical, and financial commitment from the entire family.</p>

<p><strong>METHODS: </strong>Mixed methods study of parents' perceptions regarding provider communication, treatment choices, and the family impact of having a child with MMC.</p>

<p><strong>RESULTS: </strong>Parents of children with MMC (n= 109) completed questionnaires. Parents were well informed and reported gathering information about prenatal surgery from a wide range of sources. After a fetal diagnosis of MMC, most learned about their options from their obstetrician, although one-third were not told about the option of prenatal surgery. About one-fourth of these parents felt pressure to undergo one particular option. Half of parents said that having a child with MMC has had a positive impact on them and their family, while the other half indicated that having a child with MMC has had both positive and negative impacts. The most commonly noted positive impacts were changes in parental attitudes, as well as having new opportunities and relationships. The most frequently reported negative impacts concerned relational and financial strain. The vast majority of parents indicated that they would still undergo prenatal surgery if they could travel back in time with their present knowledge.</p>

<p><strong>CONCLUSIONS: </strong>A better understanding of the parental experiences and perspectives following prenatal surgery will play an important role in providing overall support for parents and family members.</p>

DOI

10.3233/PRM-170483

Alternate Title

J Pediatr Rehabil Med

PMID

30507587

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