Status:
UNKNOWN
Timely End-of-Life Communication to Parents of Children With Brain Tumors
Lead Sponsor:
The Foundation for Barnes-Jewish Hospital
Collaborating Sponsors:
National Institute of Nursing Research (NINR)
Conditions:
Palliative Care
Communication
Eligibility:
All Genders
18+ years
Brief Summary
A national priority for health care providers is to initiate early communication about palliative and end-of-life care (PC/EOL) for children with a poor prognosis. Communication about prognosis and ad...
Detailed Description
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 ...
Eligibility Criteria
Inclusion
- 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
- Parents will be excluded from the study if:
- the child's brain tumor has a good prognosis (e.g., a non-metastatic medulloblastoma);
- 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.
Key Trial Info
Start Date :
September 1 2009
Trial Type :
OBSERVATIONAL
Allocation :
ESTIMATED
End Date :
August 1 2012
Estimated Enrollment :
6 Patients enrolled
Trial Details
Trial ID
NCT01170000
Start Date
September 1 2009
End Date
August 1 2012
Last Update
June 28 2011
Active Locations (4)
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1
Riley Children's Hospital
Indianapolis, Indiana, United States, 46202
2
Indiana University School of Nursing
Indianapolis, Indiana, United States, 46212
3
SSM Cardinal Glennon Children's Hospital
St Louis, Missouri, United States, 63104
4
Barnes-Jewish Hospital
St Louis, Missouri, United States, 63110