Burden of Cancer in Children: A Pilot Study to Investigate the Impact and Content of Video Illness Narratives

This study has been completed.
Sponsor:
Information provided by (Responsible Party):
Barbara Asselin, University of Rochester
ClinicalTrials.gov Identifier:
NCT00793299
First received: November 18, 2008
Last updated: April 24, 2015
Last verified: April 2015
  Purpose

In order to gain a greater understanding of the full experience of children with life-threatening illness, this study will provide video cameras to ten to fifteen 10-18 years olds in active treatment for cancer, and instruct them to make video illness narratives over the course of 1-3 months. The narratives will be studied as an intervention; each of the participants will be administered a measure of physical symptoms (the Memorial Symptom Assessment scale 10-18) and a measure of self-esteem (the Rosenberg Self-Esteem Scale). The video narratives will also be analyzed for content by theme in order to understand the participants' experiences in their own words. Our hypothesis is that these narratives will provide insight into the lives of children with cancer, increase their self-esteem, and decrease symptom distress, and improve communication between patients and their doctors.


Condition Intervention
Cancer
Behavioral: Video Illness Narrative

Study Type: Interventional
Study Design: Intervention Model: Single Group Assignment
Masking: Open Label
Primary Purpose: Supportive Care
Official Title: Burden of Cancer in Children: A Pilot Study to Investigate the Impact and Content of Video Illness Narratives

Resource links provided by NLM:


Further study details as provided by University of Rochester:

Primary Outcome Measures:
  • Memorial Symptom Assessment Scale [ Time Frame: 3 months ] [ Designated as safety issue: No ]

Secondary Outcome Measures:
  • Rosenberg Self Esteem Scale [ Time Frame: 3 mopnths ] [ Designated as safety issue: No ]

Enrollment: 11
Study Start Date: November 2008
Study Completion Date: September 2009
Primary Completion Date: June 2009 (Final data collection date for primary outcome measure)
Arms Assigned Interventions
Experimental: Video Illness Narrative
single arm pilot study
Behavioral: Video Illness Narrative
video

Detailed Description:

In addition to the above outcome measures:

The video narratives will also be analyzed for content by theme in order to understand the participants' experiences in their own words.

  Eligibility

Ages Eligible for Study:   10 Years to 18 Years
Genders Eligible for Study:   Both
Accepts Healthy Volunteers:   No
Criteria

Inclusion Criteria:

  • Diagnosed with cancer
  • Age 10-18
  • In active treatment for cancer
  • Followed at the Strong Memorial Hospital/Golisano Children's Hospital

Exclusion Criteria:

  • Non-English Speaker
  • Cognitively impaired so as to make data collection difficult
  Contacts and Locations
Choosing to participate in a study is an important personal decision. Talk with your doctor and family members or friends about deciding to join a study. To learn more about this study, you or your doctor may contact the study research staff using the Contacts provided below. For general information, see Learn About Clinical Studies.

Please refer to this study by its ClinicalTrials.gov identifier: NCT00793299

Locations
United States, New York
University of Rochester School of Medicine and Dentistry, Golisano Children's Hospital at Strong
Rochester, New York, United States, 14642
Sponsors and Collaborators
University of Rochester
Investigators
Principal Investigator: Emily Hahn, BA Medical Student
Principal Investigator: Barbara Asselin, MD Associate Professor
  More Information

No publications provided

Responsible Party: Barbara Asselin, Pediatrics, Hematology Oncology, University of Rochester
ClinicalTrials.gov Identifier: NCT00793299     History of Changes
Other Study ID Numbers: RSRB00025699
Study First Received: November 18, 2008
Last Updated: April 24, 2015
Health Authority: United States: Institutional Review Board

ClinicalTrials.gov processed this record on August 27, 2015