The Good Patient Study
Condition: Solid Tumor; Hematological Malignancies; Brain Tumor
MeSH terms: Hematologic Neoplasms
Study type: Observational

Summary: 
      Adolescents with cancer weigh multiple influences in medical decision-making, including their
      own best interest, the perceived wishes of family members, and the interpreted preferences of
      the health care team. Parents of children with cancer often describe themselves as trying to
      be a good parent in making decisions in the child's best interest. Adolescents with cancer
      often describe themselves as trying to be a good patient and good child in making decisions
      in accord with how they believe a good patient and good child would decide.

      Among the challenges of caring for adolescents is the reality that the formative relational
      influences in adolescents' decision-making are both complex and unique due to adolescent
      patients' social networks and relational roles. Delineating adolescents' definitions of being
      a good patient, a good child, a good sibling, and a good friend may enable the care team to
      better understand the formative decisional influences relevant to adolescents with cancer.
      Expanding knowledge about the decision making constructs relevant to adolescents with cancer
      and recognizing the role of these social constructs in medical interactions has the potential
      for development of a comprehensive care model that methodically evaluates the self-assessed
      decision making influences and needs of adolescents at various stages in oncology care.

      This qualitative construct-defining study represents an initial step in the development of
      enhanced interventions for improved psychosocial support in this vulnerable population.
    

Detailed description: 
      PRIMARY OBJECTIVES:

        -  Describe the ways relationships and social interactions may factor into adolescent study
           participants' approach to decisions;

        -  By reports from adolescents with cancer, identify behaviors from members of the study
           participants' social network that would be helpful to adolescents in fulfilling their
           preferred role in medical decision-making and achieving the desired level of
           participation in medical decision-making;

        -  Identify adolescent participants' preferred role in medical decision making.

      SECONDARY OBJECTIVES:

        -  Develop definitions of being a "good" patient, child, sibling, and friend from
           adolescent participant reports (will also welcome the study participant to self-declare
           any additional relational constructs they may wish to report);

        -  Describe how the adolescent study participant believes his or her "good" patient, child,
           sibling, and friend definition may have changed over time;

        -  Describe the self-assessed positive and negative aspects of trying to achieve the
           meanings of the "good" patient, child, sibling, and friend constructs from adolescent
           participant reports;

        -  Describe the actions of members of the study participant's social network which may help
           the study participant reach his/her definition of being a "good" patient, child,
           sibling, and friend.

      Participants will participate in a one-time voice-recorded, face-to-face interview consisting
      of open-ended questions. Completion of the interview is expected to take less than one hour.

      The qualitative interview consists of thirty open-ended questions for participants with no
      siblings and thirty-eight open-ended questions for participants who have siblings. Questions
      will be audio-recorded, face-to-face semi-structured in-depth interview format. Health
      information will also be collected from medical records.

      Expected accrual is 100 participants, 50 at each participating site. Accrual will be halted
      when the study reaches qualitative theme saturation. For this study, saturation will occur
      when three consecutive interviews fail to raise a new theme.
    

Intervention name(s): Interview
Intervention type(s): Other
Intervention description(s): This study involves teen participants taking part in one private interview with the study team. Interviews last less than one hour and are scheduled at the participant's convenience. Interviews will be audio/digital recorded. Participants may answer any or all of the questions.
Observational model: Cohort
Time perspective: Prospective
Sampling method: Non-Probability Sample
Study population: 
        Participants will be teens who are patients at St. Jude Children's Research Hospital and
        meet the criteria for study enrollment.
      
Keywords: Adolescent; Decision-making; Social network