Perspectives on Bone Marrow Donors Who Donate for Their Parent

NCT03758911 | Completed

• 3 other identifiers: J16127IRB001111312016-03p
• Study Type: observational
• Target: 16
• Locations: 0 countries
• Sites: N/A

Brief Summary

The purpose of this pilot study is to explore the role of family function on decision-making for bone marrow donors who donated for their parent, and to assess the unique supportive care needs of these participants. Semi-structured interviews were conducted with participants to identify overarching themes of the donation experience.

Conditions

Bone Marrow Transplant

Keywords

bone marrow; stem cell; donor; interview

Outcome Measures

Primary Outcomes (1)

• Themes influencing donors' decision-making as assessed by words used during interview responses

  Words/terms are extracted from interviewer responses and associated to key themes that influence participant's decision-making process. A codebook is used to reference these words/terms

  Day 1

Study Arms (1)

bone marrow/blood stem cell donors

Participants underwent a one time semi-structured telephone interview to understand the perspectives of bone marrow/stem cell donors experience, including how family dynamics impacted participants' decision to donate and identifying unique supportive care needs of bone marrow/stem cell donors.

Other: Semi-structured Interview

Interventions

Semi-structured Interview OTHER

bone marrow/blood stem cell donors

Eligibility Criteria

• Age: 13 Years+
• Sex: all
• Healthy Volunteers: Yes
• Age Groups: Child (0-17), Adult (18-64), Older Adult (65+)
• Sampling Method: Non-Probability Sample

Study Population

Participants included adolescents, young adults, or adults who had donated bone marrow or peripheral blood stem cells for their parent in the past 1 - 6 months.

You may qualify if:

• Donated bone marrow or peripheral blood stem cells for their parent in the past 1-6 months
• Willing to participate in mandatory audio recorded telephone interview
• Able to participate in interview without assistance
• Must be English speaking
• Transplant recipient (parent) must be living

You may not qualify if:

• Unable to provide oral consent for participation (for minors- unable to obtain parental consent and/or oral assent from child for participation)

Sponsors & Collaborators

• Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins: lead
• Duke University: collaborator

Study Officials

• Nina D Wagner-Johnston, MD

  Johns Hopkins University

  PRINCIPAL INVESTIGATOR

Study Design

• Study Type: observational
• Observational Model: CASE ONLY
• Time Perspective: PROSPECTIVE
• Sponsor Type: OTHER
• Responsible Party: SPONSOR

Study Record Dates

• First Submitted: November 28, 2018
• First Posted: November 29, 2018
• Study Start: December 6, 2016
• Primary Completion: June 29, 2017
• Study Completion: June 29, 2017
• Last Updated: November 30, 2018

Record last verified: 2018-11