Palliative Care and Symptom Management for the Pediatric Oncology Patient
Condition: Pediatric Cancers
Study type: Observational

Summary: 
      The goal of this study is to learn about the communication, decision-making, symptom
      management, emotional adjustment, and spiritual needs of parents and pediatric patients
      treated at the Children's Cancer Hospital at M. D. Anderson (MCACC).

      Primary Objectives:

        1. Determine the palliative care service needs of pediatric cancer patients and their
           parents, including communication, decision-making, symptom management, emotional and
           spiritual support when receiving treatment for early cancer, treatment for advanced
           disease, and treatment in the end-of-life period.

        2. Identify intra-group differences in the categories listed in Objective 1 for pediatric
           cancer patients receiving treatment (a) for early cancer, (b) for advanced disease, and
           (c) at end-of-life.

      Secondary Objectives:

      1. Inform the development of a Pediatric Palliative Care Program at the Children's Cancer
      Hospital at The University of Texas M. D. Anderson Cancer Center (MCACC or MDACC) based on
      identified needs as determined by primary study aims 1 and 2.
    

Detailed description: 
      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.
    

Intervention name(s): Focus Group - Parent/Caregiver; Focus Group - Pediatric Patient
Intervention type(s): Behavioral; Behavioral
Intervention description(s): A 1 1/2 hour group session with other parents/caregivers.; A 1 1/2 hour group session with other pediatric patients.
Observational model: Cohort
Time perspective: Prospective
Sampling method: Probability Sample
Study population: 
        Study participants 10-18 years of age with cancer and their parent(s) or caregiver(s).
      
Keywords: Pediatric Cancer; Focus Group; Pediatric cancer patients; Parents of Pediatric cancer patients; Pediatric Palliative Care Program