Comparison of black and white families' experiences and perceptions regarding organ donation requests

Context: Black families donate at a lower rate than white families. To help develop effective interventions, we compared black and white families' experiences. Objective: To compare the organ donation request experiences of black and white patients' families with the hope of identifying factors to better inform consent-rate interventions among blacks. Design: Chart reviews were conducted on files of all deceased patients. Audiotaped in-person interviews were conducted with family members, and telephone interviews were conducted with involved healthcare providers and organ procurement organization staff. Setting: Nine trauma hospitals located in southwest Pennsylvania and northeast Ohio. Participants: A sample of 415 families of organ donor-eligible patients (61 black, 354 white). Measures: Measures of families' attitudes about and experiences with donation and transplantation. Results: White families were more likely to be correctly perceived as receptive to donation. Black families viewed as receptive were less likely to be engaged in discussing as many donation-related issues as white families (p < .01). They were also less likely to have spoken to an organ procurement organization representative (p = .024) and were given fewer opportunities to consider the decision with healthcare provider or organ procurement organization staff. Black families had less knowledge about their family member's wishes, expressed less-favorable attitudes toward organ donation and the health care system, and, finally, were less likely than white families to donate organs (p = .001). A minority of black families (32.8%) knew about the need for more black donors. Conclusions: Interventions to increase consent among blacks need to encourage openness about organ donation within the black community and change healthcare provider and organ procurement organization attitudes and practices toward black families as potential donor families.