A Comparison of the Content and Quality of Organ Donation Discussions with African American Families Who Authorize and Refuse Donation

Abstract

Background

This study compares the experiences of African American (AA) families who authorized organ donation with those who refused.

Methods

Large administrative datasets were obtained from 9 partnering Organ Procurement Organizations (OPO). Initial analyses used these data to assess authorization among African American families (n = 1651). Subsequent analyses were performed using a subsample of interview data of AA family decision makers (n = 276). Initial bivariate analyses tested differences in study variables by authorization status (donor/nondonor). Two separate multilevel logistic regressions examined associations between independent variables and family authorization.

Results

Analyses of the administrative datasets found that refusal was more likely when the patient was older, female, a DCD case, and not referred in a timely manner; refusal was less likely when families initiated donation conversations. Interview data revealed that families who refused donation were less likely to respond favorably to initial donation requests and reported less satisfaction with the overall approach, amount of time with OPO staff, and how questions were handled. Refusing families were also more likely to feel pressured, had less comprehensive donation discussions, and rated the OPO requesters’ communication skills lower. No significant differences in organ donation attitudes were found between families who authorized donation and those refusing to donate.

Conclusions

The study suggests that AA families making decisions about organ donation would benefit from culturally appropriate discussions.

Trial Registration

Clinical Trial Notation: NCT02138227.

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Fig. 1

Data Availability

The data that support the findings of this study are available from the corresponding author upon reasonable request.

Abbreviations

AA:

African American

DCD:

Donation after cardiac death

FDM:

Family decision maker

HCP:

Healthcare provider

MOTTEP:

Minority Organ Tissue Transplant Education Program

OPO:

Organ Procurement Organization

RCS:

Relational communication scale

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Funding

This research was funded by grants #R01DK081118 from the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) and #R39OT10581 from the Division of Transplantation, Health Resources & Services Administration, US Department of Health and Human Services (HRSA).

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LAS participated in the research design, writing of the paper, performance of the research, and data analysis. GPA participated in the writing of the paper and performance of the research. HMG participated in the research design, writing of the paper, performance of the research, and data analysis. RDH participated in the writing of the paper. PAM participated in the writing of the paper. MWG participated in the writing of the paper and the analysis of the paper.

Corresponding author

Correspondence to Laura A. Siminoff.

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Siminoff, L.A., Alolod, G.P., Gardiner, H.M. et al. A Comparison of the Content and Quality of Organ Donation Discussions with African American Families Who Authorize and Refuse Donation. J. Racial and Ethnic Health Disparities (2020). https://doi.org/10.1007/s40615-020-00806-7

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Keywords

  • Organ donation
  • Decision making
  • African American
  • Communication
  • Disparities