The Good Patient Study
| Status: | Recruiting |
|---|---|
| Conditions: | Cancer, Brain Cancer, Blood Cancer |
| Therapuetic Areas: | Oncology |
| Healthy: | No |
| Age Range: | 12 - 19 |
| Updated: | 7/11/2015 |
| Start Date: | July 2014 |
| End Date: | July 2016 |
| Contact: | Meaghann Weaver, MD |
| Email: | info@stjude.org |
| Phone: | 866-278-5833 |
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.
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:
- 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.
- 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.
Inclusion Criteria:
- Participants must be between 12 and 19 years of age at the time of enrollment.
- Participants must have primary care team approval to participate.
- Participants must be English-speaking.
- Participants must carry an oncologic diagnosis.
- Participants must be within four months of initial oncologic diagnosis or within four
months of relapse/recurrent disease.
Exclusion Criteria:
- This study lacks any exclusion related to pregnancy (an Institutional Review Board
requirement for enrollment of females who are capable of becoming pregnant),
lactation or plans to become pregnant and lacks any exclusion of males fathering
children while on study.
- Patients who, in the opinion of their physician, are not capable mentally or verbally
of participating in the interview, will be excluded from the study.
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