Pilot Evaluation of a Palliative and End-of-Life Communication Intervention for Parents of Children With a Brain Tumor

Verna L. Hendricks-Ferguson, Kamnesh Pradhan, Chie Schin Shih, Karen M. Gauvain, Javier R. Kane, Jingxia Liu, Joan E. Haase

Research output: Contribution to journalArticle

9 Scopus citations

Abstract

Providing timely palliative and end-of-life care (PC/EOL) information to parents of children with a serious illness is a national health care priority. The goals of this study were to determine feasibility, acceptability, and parent responses related to a PC/EOL communication intervention, titled “Communication Plan: Early through End of Life (COMPLETE)” to parents of children with a brain tumor. The study was a 2-site prospective, single-group pilot study targeting parents’ stress and coping outcomes. The sample included 13 parents of 11 children (ie, 11 families). During the first 6 months postdiagnosis, we evaluated parent outcomes at 4 time points (baseline and 3 post-sessions). Our findings included significant decline in decision regret (P =.0089); strong, significantly increased hope (P ≤.0001); and significantly decreased uncertainty (P =.04). Over time, more than half of the parents (61.5%) preferred to receive information about their child’s current condition and PC/EOL options. Our findings provide evidence to suggest that the COMPLETE intervention is feasible and acceptable and produces promising effects on 3 parent outcomes (ie, decision regret, hope, and uncertainty) in parents of children with a brain tumor. Further research is indicated to evaluate COMPLETE with a larger sample of parents of children with cancer and with a control group.

Original languageEnglish
Pages (from-to)203-213
Number of pages11
JournalJournal of Pediatric Oncology Nursing
Volume34
Issue number3
DOIs
StatePublished - May 1 2017

Keywords

  • children with brain tumors
  • palliative care communication
  • parents

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