Bereaved Parent Study
The Bereaved Parent Study
1 other identifier
observational
66
1 country
1
Brief Summary
Recent focus groups at St. Jude Children's Research Hospital (SJCRH) revealed several limitations in our understanding of how parents' relationships with care staff help and hinder their grief experience. Additionally, there is a gap in the bereavement literature regarding the psychological effects professional caregiver relationships have on parents whose children died of cancer. To bolster our knowledge base and benefit Bereavement Care Services at SJCRH, as well as benefit other professionals by filling the gap in the literature, we have designed a qualitative study that will conduct individual interviews with bereaved parents whose children died at SJCRH. 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.
Trial Health
Trial Health Score
Automated assessment based on enrollment pace, timeline, and geographic reach
participants targeted
Target at P25-P50 for all trials
Started Mar 2016
Longer than P75 for all trials
1 active site
Health score is calculated from publicly available data and should be used for screening purposes only.
Trial Relationships
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Study Timeline
Key milestones and dates
First Submitted
Initial submission to the registry
April 21, 2015
CompletedFirst Posted
Study publicly available on registry
April 24, 2015
CompletedStudy Start
First participant enrolled
March 1, 2016
CompletedPrimary Completion
Last participant's last visit for primary outcome
August 21, 2020
CompletedStudy Completion
Last participant's last visit for all outcomes
August 21, 2020
CompletedOctober 28, 2021
October 1, 2021
4.5 years
April 21, 2015
October 27, 2021
Conditions
Keywords
Outcome Measures
Primary Outcomes (1)
Descriptive accounts of bereavement
Qualitative data will be collected using a standardized semi-structured interview technique. Researchers will analyze transcripts for content to gain a better understanding of the bereavement experience. Thematic saturation will occur when a minimum of 3 consecutive interviews fail to produce novel information in each of the therapeutic categories (haploidentical transplant, non-haploidentical transplant).Transcripts will be analyzed as they are obtained and the principal investigator and study team will iteratively and collaboratively develop a coding dictionary. Each transcript will be reviewed by at least 2 coders. When there is disagreement on a code, coders will meet in person to discuss until consensus is reached. Codes will be grouped into broader themes and used to summarize and describe the bereavement experience as told by parents.
Once, Day 0
Other Outcomes (2)
To qualitatively explore the unique bereavement experiences and challenges of parents of children who received bone marrow transplantation, and compare these experiences with those participants whose children did not receive bone marrow transplantation.
All data will be collected at the time of the initial interview.
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.
All data will be collected at the time of the initial interview.
Study Arms (6)
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)
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.
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.
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.
Hematology/Oncology Fellows
Participants will be Hematology/Oncology Fellows at SJCRH. They will participate in a 30-90 minute focus group.
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.
Interventions
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 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.
Eligibility Criteria
Parents who have lost a child at SJCRH and who consent to participate in the individual interviews or follow-up focus groups. Hematology/oncology Fellows at SJCRH who consent to participate in the follow up focus groups..
You may qualify if:
- Must be at least 18 years of age.
- 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.
- English-speaking Hematology/oncology Fellows at SJCRH who are at least 17 years of age.
You may not qualify if:
- Potential participants who indicate active suicidal ideation with or without plans will be excluded from the study. Appropriate care and referral will be given as indicated.
Contact the study team to confirm eligibility.
Sponsors & Collaborators
Study Sites (1)
St. Jude Children's Research Hospital
Memphis, Tennessee, 38105, United States
Related Links
MeSH Terms
Interventions
Intervention Hierarchy (Ancestors)
Study Officials
- PRINCIPAL INVESTIGATOR
Justin Baker, MD
St. Jude Children's Research Hospital
- PRINCIPAL INVESTIGATOR
Erica C. Kaye, MD, MPH
St. Jude Children's Research Hospital
Study Design
- Study Type
- observational
- Observational Model
- COHORT
- Time Perspective
- PROSPECTIVE
- Sponsor Type
- OTHER
- Responsible Party
- SPONSOR
Study Record Dates
First Submitted
April 21, 2015
First Posted
April 24, 2015
Study Start
March 1, 2016
Primary Completion
August 21, 2020
Study Completion
August 21, 2020
Last Updated
October 28, 2021
Record last verified: 2021-10