Bereaved Parent Study
| Status: | Recruiting |
|---|---|
| Healthy: | No |
| Age Range: | 18 - Any |
| Updated: | 1/23/2019 |
| Start Date: | March 1, 2016 |
| End Date: | June 2021 |
| Contact: | Lindsay Blazin, MD |
| Email: | referralinfo@stjude.org |
| Phone: | 866-278-5833 |
The Bereaved Parent Study
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.
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.
Participants who consent will engage with the principal investigator in a one-time
voice-recorded interview consisting of demographic and open-ended questions. Participants can
choose to conduct the interview face-to-face or over-the-phone. Completion of the interview
is expected to take between 60-90 minutes. Validation focus groups are expected to take
between 60-90 minutes, as well.
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.
voice-recorded interview consisting of demographic and open-ended questions. Participants can
choose to conduct the interview face-to-face or over-the-phone. Completion of the interview
is expected to take between 60-90 minutes. Validation focus groups are expected to take
between 60-90 minutes, as well.
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.
Inclusion Criteria:
- 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.
OR
- English-speaking Hematology/oncology Fellows at SJCRH who are at least 17 years of
age.
Exclusion Criteria:
- 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.
We found this trial at
1
site
262 Danny Thomas Pl
Memphis, Tennessee 38105
Memphis, Tennessee 38105
(901) 495-3300
Principal Investigator: Lindsay Blazin, MD
Phone: 866-278-5833
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