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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.
PRIMARY OBJECTIVES:
SECONDARY OBJECTIVES:
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.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| Study Participants | All enrolled participants will take part in a face-to-face interview. |
|
| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| Interview | Other | 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. |
| Measure | Description | Time Frame |
|---|---|---|
| Factors contributing to decision-making | Describe the ways relationships and social interactions may factor into adolescent study participants' approach to decisions. | Once, at enrollment |
| Behaviors that make a positive impact on decision-making | 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. | Once, at enrollment |
| Preferred decision-making role | Identify adolescent participants' preferred role in medical decision making. | Once, at enrollment |
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Inclusion Criteria:
Exclusion Criteria:
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Participants will be teens who are patients at St. Jude Children's Research Hospital and meet the criteria for study enrollment.
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| Name | Affiliation | Role |
|---|---|---|
| Meaghann Weaver, MD | St. Jude Children's Research Hospital | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Children's National Health System | Washington D.C. | District of Columbia | 20010 | United States | ||
| St. Jude Children's Research Hospital |
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| Label | URL |
|---|---|
| St. Jude Children's Research Hospital | View source |
| Clinical Trials Open at St. Jude | View source |
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| ID | Term |
|---|---|
| D019337 | Hematologic Neoplasms |
| D001932 | Brain Neoplasms |
| ID | Term |
|---|---|
| D009371 | Neoplasms by Site |
| D009369 | Neoplasms |
| D006402 | Hematologic Diseases |
| D006425 | Hemic and Lymphatic Diseases |
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| ID | Term |
|---|---|
| D007407 | Interviews as Topic |
| ID | Term |
|---|---|
| D003625 | Data Collection |
| D004812 | Epidemiologic Methods |
| D008919 | Investigative Techniques |
| D017531 | Health Care Evaluation Mechanisms |
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|
| Memphis |
| Tennessee |
| 38105 |
| United States |
| D016543 |
| Central Nervous System Neoplasms |
| D009423 | Nervous System Neoplasms |
| D001927 | Brain Diseases |
| D002493 | Central Nervous System Diseases |
| D009422 | Nervous System Diseases |
| D011787 | Quality of Health Care |
| D017530 | Health Care Quality, Access, and Evaluation |
| D011634 | Public Health |
| D004778 | Environment and Public Health |