Palliative Care and Symptom Management for the Pediatric Oncology Patient

PARENT:

The Focus Group:

If you agree to take part in this study, you will attend a 1 1/2 hour group session with 3-9
other caregivers. The group will be led by a group leader and an assistant. The group leader
will ask questions to the group about communication, decision-making, symptom management,
emotional adjustment, and spirituality experiences and needs during your child's treatment.
If you have a child who is also taking part in this study, you will meet separately from
your child.

At the time of your arrival and before the beginning of the focus group session, you will be
asked to complete a questionnaire. You will be asked about you and your child's age, sex,
where you live, your religion (if any), your ethnicity and race, and if there are other
children in the family. You will be asked about when you found out your child had cancer,
the type of cancer, and when the cancer got worse or came back (if applicable). You will be
asked whether others have shared parenting responsibilities, your education level, and if
you work and what type of work you do. The questionnaire will take about 5 minutes to
complete.

Audiotapes/Transcripts:

The assistant will take notes and the session will be recorded on an audiotape. All
audiotapes will be stored in locked cabinets maintained by the study chair. The audiotapes
will be destroyed once the study and analyses are complete.

The audiotape will be recorded onto paper "transcripts". The completed focus group
transcriptions will be placed in a database secured with a password and identification
protected. Transcribed results will have all identifiable markers removed and kept in the
investigators' locked files. Only the researchers will be able to view the transcriptions.

Length of Study:

Your participation on this study is complete once you finish the group meeting.

PEDIATRIC PARTICIPANT:

The Focus Group:

If you agree to take part in this study, you will go to a 1 1/2 hour group session with 3-9
other patients. The group will be led by a group leader and an assistant. The group leader
will ask questions to the group about who you talk with about the disease, how you make a
decision, how you manage any symptoms you may have, how you are feeling about the disease,
and how religion has helped you during your treatment. If your parent is also taking part in
this study, you will meet separately from your parent.

At the time of your arrival and before the beginning of the focus group session, your parent
will be asked to complete a questionnaire. Your parent will be asked about their age and
sex, your age and sex, where you live, your religion (if any), your ethnicity and race, and
if there are other children in the family. Your parent will be asked when they found out you
had cancer, the type of cancer, and when the cancer got worse or came back (if applicable).
Your parent will be asked whether others have shared parenting responsibilities, their
education level, and if they work and about the type of work they do. The questionnaire will
take about 5 minutes to complete.

Audiotapes/Transcripts:

The assistant will take notes and the session will be recorded on an audiotape. All
audiotapes will be stored in locked cabinets taken care of by the study chair. The
audiotapes will be destroyed once the study is over and the researchers have finished
looking at the information.

The audiotape will be recorded onto paper "transcripts". The completed focus group
transcriptions will be placed in a database secured with a password and identification
protected. Any personal information about you will be removed from these papers and the
papers will be kept in the investigators' locked files. Only the researchers will be able to
view the transcriptions.

Length of Study:

Your participation on this study is over once you complete the focus group.

Inclusion Criteria:

Inclusion for Children:

- 10-18 years of age

- MD Anderson Children's Cancer Center (MCACC) cancer patient

- receiving anti-cancer treatment for disease that is not recurrent or metastatic for
cancer diagnosed in the past 3-12 mos or receiving anti-cancer treatment for
recurrent or metastatic cancer diagnosed within the past 3-12 months

- speak & understand English

- reside in the Greater Houston area

- provide IRB-approved pediatric assent or informed consent, as age appropriate

- if < 18 years of age, provide Internal Review Board (IRB)-approved parental
permission

- child's eligibility is not contingent upon parent's decision to participate

Inclusion for parents:

- self-identified parent(s) that has(have) a child eligible for study, per the
inclusion and exclusion criteria noted above or has had a child (0-18 yrs of age at
time of death) treated for cancer at MCACC who has died in the last 1 to 2 years

- speak and understand English

- reside in the Houston metropolitan area

- provide IRB-approved informed consent

- attend different focus groups if more than one eligible parent per child (max 2
parents per child)

- parent's eligibility is not contingent upon the child's decision to participate

Exclusion Criteria:

Exclusion for Children:

- have cognitive impairment, developmental delay, or emotional distress that would
limit participation in a group discussion, as determined by the clinical judgment of
the investigator

- younger than 10 years or older than 18 years of age

Exclusion for Caregiver:

- have cognitive impairment, developmental delay, or emotional distress that would
limit participation in a group discussion, as determined by the clinical judgment of
the investigator.