An African American Perspective on Familial Notification of Becoming a Registered Organ Donor

Prog Transplant. 2019 Jun;29(2):164-172. doi: 10.1177/1526924819835837. Epub 2019 Mar 7.

Abstract

Introduction: Studies demonstrate that family notification is much less frequent in African Americans than in Caucasians. Familial notification of one's decision to become a registered organ donor (ROD) is important to ensure adherence to the decedent's donation decision and to disseminate prodonation attitudes. The purpose of this study was to explore the experiences of familial notification among recent African American RODs and to identify intervention strategies to overcome potential barriers to the notification process.

Methods/approach: The study used a qualitative focus group approach. An inductive thematic analysis identified common categories and themes in the recorded and transcribed discussions.

Findings: The focus groups consisted of 50 African American participants who had recently visited Alabama Department of Motorized Vehicles and made the voluntary decision (yes or no) about becoming an organ donor. Three major themes describing the African American experiences with notifying their family members about their decision to become a ROD emerged. These themes were as follows: motivation for the notification, notification conversation, and promoting familial notification. Specific discussions centered upon the importance of and barriers to familial notification, information, and strategies needed for successful notification. Strategies identified were use of media and social networks to provide enhanced knowledge on the notification process and the importance of health-care, community-provided knowledge about the donation process.

Discussion: Findings from this study provide a framework for future interventions designed to assist African American RODs in notifying family members of their status.

Keywords: focus groups; organ donation; qualitative research; race; surveys.

Publication types

  • Research Support, N.I.H., Extramural

MeSH terms

  • Aged
  • Aged, 80 and over
  • Alabama
  • Black or African American
  • Decision Making*
  • Family*
  • Female
  • Focus Groups
  • Health Knowledge, Attitudes, Practice*
  • Humans
  • Male
  • Middle Aged
  • Motor Vehicles / legislation & jurisprudence*
  • Surveys and Questionnaires
  • Tissue Donors / psychology*
  • Tissue and Organ Procurement
  • Young Adult