Study Results
The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.
Basic Information
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COMPLETED
66 participants
OBSERVATIONAL
2016-03-01
2020-08-21
Brief Summary
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Validation of the preliminary analyses of the initial 30 interviews will occur through new focus groups involving two separate sets of bereaved parents who will validate the findings and/or suggest additional avenues of inquiry needed to gain a more complete understanding of parental grief/bereavement experience. Additionally, focus groups with hematology/oncology fellows will obtain provider feedback on the value of these findings in their training and future role as physicians.
The initial focus group portion of this study is complete and more than 30 interviews have been conducted with bereaved parent participants. Review of those interviews revealed that very few parent participants had children who received bone marrow transplants. For this reason, we will now specifically be recruiting bereaved parent participants whose children received bone marrow transplants at St. Jude Children's Research Hospital. We will be recruiting parents of children who received haploidentical and non-haploidentical bone marrow transplants because we believe the parents of deceased children who received haploidentical bone marrow transplants may have unique bereavement experiences related to their possible roles as donors. The act of donating or not being selected to donate to a child who goes on to die from cancer and its related complications may have unique impacts on the grieving process and warrants specific investigation. We also hope to better understand how legacy building interventions are perceived and utilized by caregivers following the death of a child from cancer.
Detailed Description
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PRIMARY OBJECTIVE
To conduct qualitative interviews in order to understand what helps and what hinders bereavement processes among St. Jude parents, with particular attention to how relationships with St. Jude professional care staff affect parental bereavement processes.
EXPLORATORY OBJECTIVES
To qualitatively explore the unique bereavement experiences and challenges of parents of children who have received bone marrow transplantation, and compare these experiences with those participants whose children did not receive bone marrow transplantation.
To assess for qualitative similarities among parents with similar responses on questionnaires and/or to identify between-group differences on questionnaires among parents with qualitatively similar experiences.
Conditions
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Keywords
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Study Design
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COHORT
PROSPECTIVE
Study Groups
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Parents of deceased children (no BMT)
Participants will be parents who have lost a child at St. Jude Children's Research Hospital (SJCRH). They will participate in a 60-90 minute interview.
(Not recruiting)
Interview
This is a prospective study with a semi-structured in-depth qualitative interview. Interviews will be conducted by the study PI or designee. However, in order to ensure that the interviews are conducted sensitively, the first 10 interviews will be observed and supervised by a clinically credentialed St. Jude faculty member, and an additional 10% of the interviews will be observed after that.
In order to ensure that the interviewer does not lead the participant, or in turn, that the participant does not feel limited in regards to what they believe is an appropriate or desired response, the semi-structured interview questions are general and intended to produce broad responses in regards to participant experiences.
Parents of deceased children (haploidentical BMT)
Participants will be parents whose child died after receiving a haploidentical bone marrow transplant at St. Jude Children's Research Hospital (SJCRH), and who have not previously participated in an interview through this study. They will participate in a 30-90 minute interview.
Interview
This is a prospective study with a semi-structured in-depth qualitative interview. Interviews will be conducted by the study PI or designee. However, in order to ensure that the interviews are conducted sensitively, the first 10 interviews will be observed and supervised by a clinically credentialed St. Jude faculty member, and an additional 10% of the interviews will be observed after that.
In order to ensure that the interviewer does not lead the participant, or in turn, that the participant does not feel limited in regards to what they believe is an appropriate or desired response, the semi-structured interview questions are general and intended to produce broad responses in regards to participant experiences.
Parents of deceased children (non-haploidentical BMT)
Participants will be parents whose child died after receiving a non-haploidentical bone marrow transplant at St. Jude Children's Research Hospital (SJCRH), and who have not previously participated in an interview through this study. They will participate in a 30-90 minute interview.
Interview
This is a prospective study with a semi-structured in-depth qualitative interview. Interviews will be conducted by the study PI or designee. However, in order to ensure that the interviews are conducted sensitively, the first 10 interviews will be observed and supervised by a clinically credentialed St. Jude faculty member, and an additional 10% of the interviews will be observed after that.
In order to ensure that the interviewer does not lead the participant, or in turn, that the participant does not feel limited in regards to what they believe is an appropriate or desired response, the semi-structured interview questions are general and intended to produce broad responses in regards to participant experiences.
Parents of deceased children (not interviewed)
Participants will be parents who have lost a child at SJCRH, who have not previously participated in an interview through this study.They will participate in a 30-90 minute focus group.
Focus Group
Focus groups will be conducted with a two-fold purpose in mind:
1. With bereaved parents: to validate the findings of the preliminary analyses of the initial interviews \&/or to suggest avenues of further inquiry to expand and more deeply define the grief journey of bereaved parents.
2. With Hematology/Oncology Fellows: to receive input regarding the applicability and use of the findings during the training and future careers of these medical providers.
Hematology/Oncology Fellows
Participants will be Hematology/Oncology Fellows at SJCRH. They will participate in a 30-90 minute focus group.
Focus Group
Focus groups will be conducted with a two-fold purpose in mind:
1. With bereaved parents: to validate the findings of the preliminary analyses of the initial interviews \&/or to suggest avenues of further inquiry to expand and more deeply define the grief journey of bereaved parents.
2. With Hematology/Oncology Fellows: to receive input regarding the applicability and use of the findings during the training and future careers of these medical providers.
Legacy-Building
Participants will be parents who have lost a child at SJCRH and received legacy items. They will participate in a 30-90 minute interview.
Interview
The interview will be conducted by study team members and will center around legacy item-related questions.
Interventions
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Interview
This is a prospective study with a semi-structured in-depth qualitative interview. Interviews will be conducted by the study PI or designee. However, in order to ensure that the interviews are conducted sensitively, the first 10 interviews will be observed and supervised by a clinically credentialed St. Jude faculty member, and an additional 10% of the interviews will be observed after that.
In order to ensure that the interviewer does not lead the participant, or in turn, that the participant does not feel limited in regards to what they believe is an appropriate or desired response, the semi-structured interview questions are general and intended to produce broad responses in regards to participant experiences.
Focus Group
Focus groups will be conducted with a two-fold purpose in mind:
1. With bereaved parents: to validate the findings of the preliminary analyses of the initial interviews \&/or to suggest avenues of further inquiry to expand and more deeply define the grief journey of bereaved parents.
2. With Hematology/Oncology Fellows: to receive input regarding the applicability and use of the findings during the training and future careers of these medical providers.
Interview
The interview will be conducted by study team members and will center around legacy item-related questions.
Other Intervention Names
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Eligibility Criteria
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Inclusion Criteria
* Must be English-speaking.
* Must have had a child who received oncological treatment at SJCRH.
* The child who received treatment must have died at least 1 year prior but no more than 6 years ago, with the cause of death related to progressive cancer or cancer-related complications.
OR
* English-speaking Hematology/oncology Fellows at SJCRH who are at least 17 years of age.
Exclusion Criteria
18 Years
ALL
No
Sponsors
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St. Jude Children's Research Hospital
OTHER
Responsible Party
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Principal Investigators
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Justin Baker, MD
Role: PRINCIPAL_INVESTIGATOR
St. Jude Children's Research Hospital
Erica C. Kaye, MD, MPH
Role: PRINCIPAL_INVESTIGATOR
St. Jude Children's Research Hospital
Locations
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St. Jude Children's Research Hospital
Memphis, Tennessee, United States
Countries
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Related Links
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St. Jude Children's Research Hospital
Clinical Trials Open at St. Jude
Other Identifiers
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BPS14
Identifier Type: -
Identifier Source: org_study_id