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Timely End-of-Life Communication to Parents of Children With Brain Tumors

18 Years
Open (Enrolling)
Palliative Care, Communication

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Trial Information

Timely End-of-Life Communication to Parents of Children With Brain Tumors

Physicians and nurses (MDs/ RNs) struggle to communicate effectively about palliative and
end-of-life (PC/EOL) care with parents when their child's prognosis is poor, and rarely
collaborate as a team in this difficult process. The aim of this study was to develop and
evaluate training strategies for MD/RN dyads to collaboratively deliver a PC/EOL
communication intervention called, Communication Plan: Early through End of Life (COMPLETE),
to 24 parents of children with brain tumors. During Phase I, training strategies were based
on principles from a Relationship Centered Care perspective. The training was delivered to 3
pediatric neuro-oncologists and 5 oncology nurses by a team of parent advisors and a team of
expert consultants (i.e., medical ethics, communication, and PC/EOL). Our 2-day training
included 4 modules: family assessment, goal directed treatment planning, anticipatory
guidance, and staff communication and follow-up. Each module included: didactic content,
small group reflective sessions, and communication skills practice with bereaved parent.
Evaluations included dichotomous (agree/disagree) ratings and qualitative comments on
didactic content, small group reflection, and skills practice for each module. Helpful
aspects of our training strategies included: parent advisers' insights, emotional presence,
emphasis on hope and non-abandonment messages, written materials to facilitate PC/EOL
communication, and a team approach. For this presentation we will discuss insights gained
regarding use of a parent advisory panel, strategies to help the MD/RN dyads feel
comfortable working as a team to communicate with parents, and ways to improve training
procedures and our intervention.

Pediatric oncology physicians and nurses found PC/EOL care communication training strategies
and content as helpful and useful. During Phase II of our study, our PC/EOL care
communication intervention is planned to be implemented and evaluated with 24 enrolled
parents. If effective, this intervention will facilitate integration of quality PC care
practices into the care of children with brain tumors.

Inclusion Criteria:

- Eligibility criteria include parents who are:

- 18 years of age or older;

- the primary decision makers (i.e., single parent or couple-dyad) for their child
(birth to 18 years of age);

- the biological parents, step-parents, or legal guardians (e.g., adoptive parent);

- single or married;

- informed that their child is diagnosed with a brain tumor with a poor prognosis as
determined by the primary neuro-oncologist (e.g., glioblastoma multiforme, PNET, WHO
grade 3/4 brain tumor, or metastatic medulloblastoma); [3, 33, 38, 41, 42, 175]

- able to read, speak, and understand English.

- Our rationale for these criteria is to include: (a) parents of children who are at
high risk of not receiving timely PC/EOL and b) parents who are likely to be mature
enough to make difficult decisions on their own. In addition, we recognize the
importance of providing sensitive PC/EOL communication to all parents; however, it is
beyond the scope of the R21 mechanism to develop scripts in other languages.

Exclusion Criteria:

- Parents will be excluded from the study if:

- the child's brain tumor has a good prognosis (e.g., a non-metastatic

- the child has been treated previously for another type of cancer;

- the parents have neurological and/or cognitive impairments, as reported by the site
MD/RN team, preventing them from understanding the treatment options and completing
the questionnaires;

- either parent in a decision-making couple (i.e., dyad) declines consent.

Type of Study:


Study Design:

Observational Model: Family-Based, Time Perspective: Prospective

Principal Investigator

Verna Ferguson, PhD

Investigator Role:

Principal Investigator

Investigator Affiliation:

Barnes-Jewish Hospital


United States: Institutional Review Board

Study ID:

09-0763 BJH



Start Date:

September 2009

Completion Date:

August 2012

Related Keywords:

  • Palliative Care
  • Communication
  • Brain Neoplasms



Barnes-Jewish Hospital Saint Louis, Missouri  63110
Indiana University School of Nursing Indianapolis, Indiana  46202
Riley Children's Hospital Indianapolis, Indiana  46202
SSM Cardinal Glennon Children's Hospital St. Louis, Missouri  63104