TY - JOUR
T1 - Pilot Evaluation of a Palliative and End-of-Life Communication Intervention for Parents of Children With a Brain Tumor
AU - Hendricks-Ferguson, Verna L.
AU - Pradhan, Kamnesh
AU - Shih, Chie Schin
AU - Gauvain, Karen M.
AU - Kane, Javier R.
AU - Liu, Jingxia
AU - Haase, Joan E.
N1 - Publisher Copyright:
© 2016 by Association of Pediatric Hematology/Oncology Nurses.
PY - 2017/5/1
Y1 - 2017/5/1
N2 - 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.
AB - 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.
KW - children with brain tumors
KW - palliative care communication
KW - parents
UR - http://www.scopus.com/inward/record.url?scp=85018992591&partnerID=8YFLogxK
U2 - 10.1177/1043454216676836
DO - 10.1177/1043454216676836
M3 - Article
C2 - 27920233
AN - SCOPUS:85018992591
SN - 1043-4542
VL - 34
SP - 203
EP - 213
JO - Journal of Pediatric Oncology Nursing
JF - Journal of Pediatric Oncology Nursing
IS - 3
ER -