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The Experience of Informal Caregivers of Patients With Brain Tumors


N/A
18 Years
N/A
Not Enrolling
Both
Brain Cancer, Glioma

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Trial Information

The Experience of Informal Caregivers of Patients With Brain Tumors


Caregiver Consent:

If you agree to take part in this study, you will be asked to have 1 interview. This will be
a face-to-face interview that will take place at M. D. Anderson while you are there for the
patient's physician appointment.

During this interview, you will be asked to describe what it has been like for you to help
care for a person with a primary brain tumor in the past, what it is like to care for a
person with a primary brain tumor now, and what you think it might be like in the future.
You will be interviewed alone, and your interview will be tape recorded and then written on
paper. The information that is gathered (the tape and the written information) will be kept
strictly confidential. The tapes and any paperwork will be kept in a locked box during and
after this study. The written information will be kept in password-protected computer files.
The researcher is the only person who will have access to the tapes. You will also be
asked to answer a questionnaire on paper. This questionnaire will ask specific personal
information, such as your age, occupation, and relationship to the patient. This
questionnaire will take about 5 minutes to complete. The entire interview will take about 30
minutes to complete.

Your participation in this study will be over after you complete the interview and the
questionnaire.

This is an investigational study. Up to 20 caregivers will take part in this study. All
will be enrolled at M. D. Anderson.

Patient Consent:

If you agree to take part in this study, you will be asked to choose a family member or a
friend who is your main caregiver and who may be willing to take part in 1 interview for
this study. Your consent in this study, will give researchers permission to contact your
caregiver. If your caregiver chooses to participate, the interview will be face-to-face, and
it will take place at M. D. Anderson while you are there for your physician appointment.
During this interview, the caregiver will be asked to describe what it has been like for
them to help care for you. The researcher will get informed consent from your caregiver and
will go into further detail about this study.

He or she will be interviewed alone, and the information gathered during the interview will
be kept strictly confidential. Your caregiver will be asked to complete a questionnaire for
specific personal information, such as his or her age, occupation, and relationship to you.
The entire interview will take about 30 minutes to complete.

You will be asked to allow your sociodemographic data (such as your gender, marital status,
etc.) and medical data (such as your diagnosis, therapies received, etc.) to be collected
from your medical record. This information will be used to help researchers learn about the
unique backgrounds of the patients participating in this study. Your information that is
gathered will be kept strictly confidential, and it will be kept in a locked box during and
after this study.

Your participation in this study will be over after your sociodemographic and medical data
have been collected from your medical record.

This is an investigational study. Up to 20 patients will take part in this study. All will
be enrolled at M. D. Anderson.


Inclusion Criteria:



1. 18 years of age or older

2. Ability to speak and read English

3. Diagnosis of a primary brain glioma, World Health Organization Grade II-IV (PATIENT
ONLY)

4. At least 3 months since time of diagnosis (PATIENT ONLY)

5. Identification as the primary informal caregiver by a patient with a primary brain
glioma (CAREGIVER ONLY)

6. Consent to participate

Exclusion Criteria:

1. Inability to understand the intent of the study

2. Medical condition that would preclude participation in an interview lasting 30
minutes (CAREGIVER ONLY)

Type of Study:

Observational

Study Design:

Observational Model: Case-Only, Time Perspective: Prospective

Outcome Measure:

Descriptive exploratory analysis to identify themes and describe experience of caring for a person with a primary brain tumor

Outcome Time Frame:

1 year

Safety Issue:

No

Principal Investigator

Loretta A. Williams, DSN

Investigator Role:

Principal Investigator

Investigator Affiliation:

M.D. Anderson Cancer Center

Authority:

United States: Food and Drug Administration

Study ID:

2006-0019

NCT ID:

NCT00352820

Start Date:

April 2006

Completion Date:

December 2006

Related Keywords:

  • Brain Cancer
  • Glioma
  • Caregiver
  • Brain cancer
  • Glioma
  • Questionnaire
  • Survey
  • Interview
  • Brain Neoplasms
  • Glioma

Name

Location

U.T. M.D. Anderson Cancer Center Houston, Texas  77030