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Inter- and Intrapersonal Barriers to Living Donor Kidney Transplant among Black Recipients and Donors

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Journal of Racial and Ethnic Health Disparities Aims and scope Submit manuscript

Abstract

Context

End-stage renal disease (ESRD) is more common among Blacks, but Blacks are less likely to receive a live donor kidney transplant (LDKT).

Objective

The objective of this study is to identify barriers and coping mechanisms that Black LDKT recipients and donors experienced while receiving or donating a kidney.

Design

A qualitative study was conducted using structured interviews. Thematic analysis was used for data interpretation.

Participants

All 20 participants identified as Black, with two participants identifying themselves as multiracial. The mean age for the 14 recipients was 60, and the average age for the 6 living donors was 47.

Results

Themes emerging from the data suggest both recipients and donors faced barriers in the LDKT experience. Recipients faced barriers associated with their denial and avoidance of the severity of their ESRD, their desire to maintain the privacy of their health status, and their refusal to approach potential donors. Donors encountered negative responses from others about the donors’ desire to donate and the initial refusal of recipients to accept a LDKT offer. Recipients identified faith as a coping mechanism, while donors identified normalization of donation as their method of coping. Various types of social support helped donors and recipients navigate the transplant process.

Conclusion

Black LDKT recipients and donors must overcome barriers prior to receiving or donating a kidney. Most of these barriers arise from communication and interactions with others that are either lacking or undesirable. Future interventions to promote LDKT among Blacks may benefit by specifically targeting these barriers.

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Author information

Authors and Affiliations

  1. Renal and Pancreas Transplant Division, Saint Barnabas Medical Center, 94 Old Short Hills Road, Livingston, NJ, 07039, USA

    LaShara A. Davis, Tracy M. Grogan & Francis L. Weng

  2. School of Communication and Information, Rutgers University, 4 Huntington St, New Brunswick, NJ, 08901, USA

    LaShara A. Davis & Joy Cox

  3. Rutgers School of Public Health, Rutgers University, 683 Hoes Lane West, Piscataway, NJ, 08854, USA

    Francis L. Weng

Authors
  1. LaShara A. Davis
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  2. Tracy M. Grogan
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  3. Joy Cox
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  4. Francis L. Weng
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Corresponding author

Correspondence to LaShara A. Davis.

Ethics declarations

Ethical Approval

All procedures performed in the studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki Declaration and its later amendments or comparable ethical standards.

Informed Consent

Informed consent was obtained from all individual participants included in the study.

Disclosure

This research was supported in part by grants R01DK098744 and R01MD007664 from the National Institutes of Health and a grant from the Harvey E. Nussbaum Research Institute at Saint Barnabas Medical Center.

Appendices

Appendix 1

Barriers to LDKT: Interview Guide for LDKT Recipients

  1. 1.

    How did you find out you had kidney disease? With kidney disease, most people have a few treatment options, transplant being just one of them. What made you decide to get evaluated for a transplant?

  2. 2.

    What kind of information did you receive about deceased donor transplant?

  3. 3.

    What kind of information did you receive about living donor transplant?

  4. 4.

    What did you think were the benefits of LDKT?

  5. 5.

    What did you think were the risks of LDKT

  6. 6.

    What were your concerns about LDKT? [ PROBE : some concerns might include worries about future health after donation; body image; ability to become pregnant (if female); financial concerns [regarding amount of time out of work]

  7. 7.

    What, if any, concerns did your family have about live donor kidney transplant? What, if any, concerns did your friends have about live donor kidney transplant?

  8. 8.

    What barriers did you face while you were pursuing living donor transplant?

PROBE the following to move the discussion along:

  1. a.

    Barriers identifying donors

  2. b.

    Barriers to completing evaluation

  3. c.

    Barriers with the actual transplant surgery

  4. d.

    Barriers following your transplant

  5. e.

    Financial barriers

  6. f.

    System barriers

  1. 9.

    What, if anything, do you know now that you wish you knew before you got your living donor kidney transplant? Did you feel that all of your questions about transplant were answered?

Appendix 2

Barriers to LDKT: Interview Guide for Actual Live Kidney Donors

  1. 1.

    Who were you originally interested in donating a kidney to?

    1. a.

      What made you interested in donating?

    2. b.

      [If intended recipient was not an immediate family member] How did you know this person?

  2. 2.

    How did that situation present itself? How did you find out that this person needed a kidney?

  3. 3.

    Tell me about how you decided to come forward as a possible donor of a living kidney for [name of intended recipient]. [ PROBE: How did you make the decision to become a living donor? Did you just decide right away that you wanted to donate? Did you take the take the time to think through the decision? If you took time to decide, did you use any specific information or resources to help you with your decision? If so, what did you use to help you make your decision?]

  4. 4.

    What was your motivation for volunteering to donate?

  5. 5.

    In your opinion, what were the risks of being a living donor?

  6. 6.

    What were your concerns about donation? [ PROBE : some concerns might include worries about future health after donation; body image; ability to become pregnant (if female); financial concerns [regarding amount of time out of work]

  7. 7.

    What, if any, concerns did your family have about live donor kidney transplant? What, if any, concerns did your friends have about live donor kidney transplant?

  8. 8.

    Think back to the time that you went to the transplant center and met with a nurse. How was the experience? Can you tell me about that visit? [PROBE: Were there any specific parts of the evaluation process that were particularly difficult? If so, what made them difficult?

  9. 9.

    What barriers did you face while you were pursuing live kidney donation? [PROBE: Barriers with completing evaluation (e.g. time to do tests to come here to SBMC OR own health issues that prevent or hinder completion of evaluation); Barriers with the actual transplant surgery; Barriers following the surgery; Financial barriers; System barriers]

  10. 10.

    How did you feel about donating? [PROBE: What were your positive thoughts about donating? What were your negative thoughts about donating?]

  11. 11.

    Were there any specific parts of the donation process that were particularly difficult? If so, what made them difficult?

  12. 12.

    How did your family react when they found out that you were donating? How did your friends react? [PROBE: Did you tell them about your decision, or did they find out some other way? ]

  13. 13.

    How did your intended recipient react when he/she found out you were donating? [PROBE: Did you tell him/her about your decision, or did they find out some other way?]

How did volunteering to donate affect your relationship with the intended recipient?

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Davis, L.A., Grogan, T.M., Cox, J. et al. Inter- and Intrapersonal Barriers to Living Donor Kidney Transplant among Black Recipients and Donors. J. Racial and Ethnic Health Disparities 4, 671–679 (2017). https://doi.org/10.1007/s40615-016-0270-8

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  • DOI: https://doi.org/10.1007/s40615-016-0270-8

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