title: Pilot Evaluation of a Palliative and End-of-Life Communication Intervention for Parents of Children With a Brain Tumor.
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.
authors.affiliation: 1 St Louis University, St Louis, MO, USA.
authors.forename: Verna L
authors.initials: VL
authors.lastname: Hendricks-Ferguson
authors.affiliation: 2 Indiana University, Indianapolis, IN, USA.
authors.forename: Kamnesh
authors.initials: K
authors.lastname: Pradhan
authors.affiliation: 2 Indiana University, Indianapolis, IN, USA.
authors.forename: Chie-Schin
authors.initials: CS
authors.lastname: Shih
authors.affiliation: 3 Washington University, St Louis, MO, USA.
authors.forename: Karen M
authors.initials: KM
authors.lastname: Gauvain
authors.affiliation: 4 Texas A&M University, Temple, TX, USA.
authors.forename: Javier R
authors.initials: JR
authors.lastname: Kane
authors.affiliation: 3 Washington University, St Louis, MO, USA.
authors.forename: Jingxia
authors.initials: J
authors.lastname: Liu
authors.affiliation: 2 Indiana University, Indianapolis, IN, USA.
authors.forename: Joan E
authors.initials: JE
authors.lastname: Haase
mesh_terms: D000223:Adaptation, Psychological; D000328:Adult; D001932:Brain Neoplasms / Q000451:nursing* / Q000523:psychology; D002648:Child; D002675:Child, Preschool; D005260:Female; D006801:Humans; D008297:Male; D010290:Parents / Q000523:psychology*; D010348:Patient Care Team; D010865:Pilot Projects; D011368:Professional-Family Relations; D011446:Prospective Studies; D013727:Terminal Care / Q000379:methods / Q000523:psychology*
keywords: children with brain tumors; palliative care communication; parents