“when I Heard Palliative Care, I Heard Hospice”: Parents’ Experiences With Pediatric Palliative Care Consultation In The Neonatal Intensive Care Unit

Title

“when I Heard Palliative Care, I Heard Hospice”: Parents’ Experiences With Pediatric Palliative Care Consultation In The Neonatal Intensive Care Unit

Creator

Currie E; Bakitas M; Perna S; Christian B; Meneses K

Identifier

DOI: http://dx.doi.org/10.1016/j.jpainsymman.2015.12.051

Publisher

Journal Of Pain And Symptom Management

Date

2016

Description

Objectives
Describe the role of pediatric palliative care
consultation in the neonatal intensive care unit
(NICU) setting.
Describe parent experiences with a pediatric palliative
care consultation in the NICU and implications
for practice and further research efforts.
Background. In 2013, 23,440 infants died in the US;
most deaths occurred in the first 28 days of life. Pediatric
palliative care consultation (PPC) in the neonatal
intensive care unit (NICU) may provide much needed
support for these infants and parents. Early in the critical
illness trajectory, PPC may assist with parental decision-making.
However, there is a paucity of research
on parental perceptions of PPC and why these services
may be underused in the NICU until death is
imminent.
Research Objectives. To describe parents’ experiences
with a PPC prior to their infant’s death in the
NICU.
Methods. In this descriptive qualitative study, we conducted
individual audio-recorded, semi-structured interviews
with a convenience sample of parents
(N¼10) from a children’s hospital in the Southeastern
US approximately four years after infant death. Upon
reaching thematic saturation, verbatim transcribed interviews
were verified for accuracy, coded, and content
analyzed using qualitative descriptive methods. We
used member-checking to enhance trustworthiness
of the findings.
Results. Six of 10 parents had formal PPC. Most PPC
occurred near the end of life, and parents’ reported
‘‘negative connotations’’ associated with the consult
initially, such as losing hope of curative treatment.
However, all parents who received PPC would recommend
this service to other parents and found PPC as
a helpful layer of support. Specific positive experiences
included: feeling like they had an extra advocate,
a non-judgmental sounding board, and
‘‘another support branch.’’
Conclusions. PPC is often not considered until very
near death, and parents’ identified PPC as a marker
of transition from curative to end-of-life care. Nevertheless,
parents found PPC to be valuable and would
recommend it to other parents.
Implications for Research, Policy or
Practice. Further research is necessary to understand
the factors that influence parental perceptions of PPC
and how to identify opportunities for earlier PPC integration
in the NICU.

Rights

Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).

Citation List Month

March 2016 List

Citation

Currie E; Bakitas M; Perna S; Christian B; Meneses K, ““when I Heard Palliative Care, I Heard Hospice”: Parents’ Experiences With Pediatric Palliative Care Consultation In The Neonatal Intensive Care Unit,” Pediatric Palliative Care Library, accessed July 25, 2021, https://pedpalascnetlibrary.omeka.net/items/show/10549.

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