TY - JOUR
T1 - Perceptions, motivations, and concerns about living organ donation among people living with HIV
AU - Van Pilsum Rasmussen, Sarah E.
AU - Henderson, Macey L.
AU - Bollinger, Juli
AU - Seaman, Shanti
AU - Brown, Diane
AU - Durand, Christine M.
AU - Segev, Dorry L.
AU - Sugarman, Jeremy
N1 - Funding Information:
for this study was supported by JHU CFAR/ NIAID fund P30AI094189, The Greenwall Foundation Making a Difference Grant, NIH 1R34AI123023-01 (HOPE in Action: HIV-to-HIV Solid Organ Transplantation in the US), NIH 1R01AI120938-01A1 (Unlocking the Potential of HIV-Infected and Deceased Donors for Organ Transplantation), and NIH 1K01DK114388 (Technological Innovations in Live Kidney Donor Follow-up Care Management). National Institute of Diabetes and Digestive and Kidney Diseases.
Funding Information:
Funding for this study was supported by JHU CFAR/ NIAID fund P30AI094189, The Greenwall Foundation Making a Difference Grant, NIH 1R34AI123023-01 (HOPE in Action: HIV-to-HIV Solid Organ Transplantation in the US), NIH 1R01AI120938-01A1 (Unlocking the Potential of HIV-Infected and Deceased Donors for Organ Transplantation), and NIH 1K01DK114388 (Technological Innovations in Live Kidney Donor Follow-up Care Management). National Institute of Diabetes and Digestive and Kidney Diseases.
Publisher Copyright:
© 2018, © 2018 Informa UK Limited, trading as Taylor & Francis Group.
PY - 2018/12/2
Y1 - 2018/12/2
N2 - Recent changes to United States law now permit people living with HIV (PLWH) to donate organs to HIV-infected (HIV+) recipients under research protocols. PLWH may have unique motivations for and concerns about living donation and understanding them is critical to ensuring the integrity of this novel approach to organ transplantation. We conducted in-depth interviews with PLWH from an urban HIV clinic who had previously indicated their willingness to be a living donor. Interviews elicited information on their motivations, perceived benefits, and concerns regarding living donation. Codes were identified inductively and then organized into themes and subthemes. Two coders independently analyzed the interviews and reconciled differences in coding by consensus. Thematic saturation was reached after 20 interviews. Motivations for living donation among PLWH included an altruistic desire to help others as well as HIV-specific motivations including solidarity with potential recipients and a desire to overcome HIV-related stigma. Perceived benefits of living donation included gratification from saving or improving the recipient's life and conferring a sense of normalcy for the HIV+ donor. Concerns about donation included the possibility of a prolonged recovery period, organ failure, and transmission of another strain of the virus to the recipients. PLWH had unique motivations, perceived benefits, and concerns about living donation in addition to those previously identified in the general population. These unique factors should be addressed in research protocols, informed consent processes, and the education and training of independent living donor advocates so that these endeavors are ethically sound.
AB - Recent changes to United States law now permit people living with HIV (PLWH) to donate organs to HIV-infected (HIV+) recipients under research protocols. PLWH may have unique motivations for and concerns about living donation and understanding them is critical to ensuring the integrity of this novel approach to organ transplantation. We conducted in-depth interviews with PLWH from an urban HIV clinic who had previously indicated their willingness to be a living donor. Interviews elicited information on their motivations, perceived benefits, and concerns regarding living donation. Codes were identified inductively and then organized into themes and subthemes. Two coders independently analyzed the interviews and reconciled differences in coding by consensus. Thematic saturation was reached after 20 interviews. Motivations for living donation among PLWH included an altruistic desire to help others as well as HIV-specific motivations including solidarity with potential recipients and a desire to overcome HIV-related stigma. Perceived benefits of living donation included gratification from saving or improving the recipient's life and conferring a sense of normalcy for the HIV+ donor. Concerns about donation included the possibility of a prolonged recovery period, organ failure, and transmission of another strain of the virus to the recipients. PLWH had unique motivations, perceived benefits, and concerns about living donation in addition to those previously identified in the general population. These unique factors should be addressed in research protocols, informed consent processes, and the education and training of independent living donor advocates so that these endeavors are ethically sound.
KW - People living with HIV
KW - ethics
KW - living organ donation
KW - organ donation
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U2 - 10.1080/09540121.2018.1469724
DO - 10.1080/09540121.2018.1469724
M3 - Article
C2 - 29724118
AN - SCOPUS:85046489573
SN - 0954-0121
VL - 30
SP - 1595
EP - 1599
JO - AIDS Care - Psychological and Socio-Medical Aspects of AIDS/HIV
JF - AIDS Care - Psychological and Socio-Medical Aspects of AIDS/HIV
IS - 12
ER -