NCT02425787

Bereaved Parent Study

Completed Last updated 28 October 2021

What this trial tests

trial testing Interview in Bereavement in 66 participants. Completed in 21 August 2020.

Timeline

1 March 2016

Primary endpoint
21 August 2020

21 August 2020

Quick facts

Lead sponsor	St. Jude Children's Research Hospital
Status	Completed
Study type	OBSERVATIONAL
Enrollment	66
Start date	1 March 2016
Primary completion	21 August 2020
Estimated completion	21 August 2020
Sites	1 location across United States

Drugs / interventions tested

• Interview
• Focus Group
• Interview

Conditions studied

• Bereavement — all drugs for Bereavement →

Sponsor

St. Jude Children's Research Hospital

Who can join

18 and older, any sex, with Bereavement. Patients with the condition only — healthy volunteers not accepted.

Sponsor's own description

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.

Publications & conference data

No peer-reviewed publications indexed yet for this trial. Completed trials usually publish results within 12-18 months.