Mistrust, Misperceptions, and Miscommunication: A Qualitative Study of Preferences About Kidney Transplantation Among African Americans

Abstract Background Kidney transplantation rates in the United States are lower among African Americans than among whites. Well-documented racial disparities in access to transplantation explain some, but not all, of these differences. Prior survey-based research suggests that African American dialy...

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Veröffentlicht in:Transplantation proceedings 2015-03, Vol.47 (2), p.240-246
Hauptverfasser: Wachterman, M.W, McCarthy, E.P, Marcantonio, E.R, Ersek, M
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container_title Transplantation proceedings
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creator Wachterman, M.W
McCarthy, E.P
Marcantonio, E.R
Ersek, M
description Abstract Background Kidney transplantation rates in the United States are lower among African Americans than among whites. Well-documented racial disparities in access to transplantation explain some, but not all, of these differences. Prior survey-based research suggests that African American dialysis patients are less likely than whites to desire transplantation, but little research has focused on an in-depth exploration of preferences about kidney transplantation among African Americans. Thus, the purposes of this study were to explore preferences and to compare patients' expectations about transplantation with actual status on the transplant list. Methods We conducted semistructured interviews with 16 African Americans receiving chronic hemodialysis. We analyzed the interviews using the constant comparative method of qualitative analysis. We also reviewed the dialysis center's transplant list. Results Four dominant themes emerged: (1) varied desire for transplant; (2) concerns about donor source; (3) barriers to transplantation; and (4) lack of communication with nephrologists and the transplantation team. A thread of mistrust about equity in the transplantation process flowed through themes 2–4. In 7/16 cases, patients' understanding of their transplant listing status was discordant with their actual status. Conclusions Our study suggests that many African Americans on hemodialysis are interested in kidney transplantation, but that interest is often tempered by concerns about transplantation, including misconceptions about the risks to recipients and donors. Mistrust about equity in the organ allocation process also contributed to ambivalence. The discordance between patients' perceptions of listing status and actual status suggests communication gaps between African American hemodialysis patients and physicians. Clinicians should avoid interpreting ambivalence about transplantation as lack of interest.
doi_str_mv 10.1016/j.transproceed.2015.01.016
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Well-documented racial disparities in access to transplantation explain some, but not all, of these differences. Prior survey-based research suggests that African American dialysis patients are less likely than whites to desire transplantation, but little research has focused on an in-depth exploration of preferences about kidney transplantation among African Americans. Thus, the purposes of this study were to explore preferences and to compare patients' expectations about transplantation with actual status on the transplant list. Methods We conducted semistructured interviews with 16 African Americans receiving chronic hemodialysis. We analyzed the interviews using the constant comparative method of qualitative analysis. We also reviewed the dialysis center's transplant list. Results Four dominant themes emerged: (1) varied desire for transplant; (2) concerns about donor source; (3) barriers to transplantation; and (4) lack of communication with nephrologists and the transplantation team. A thread of mistrust about equity in the transplantation process flowed through themes 2–4. In 7/16 cases, patients' understanding of their transplant listing status was discordant with their actual status. Conclusions Our study suggests that many African Americans on hemodialysis are interested in kidney transplantation, but that interest is often tempered by concerns about transplantation, including misconceptions about the risks to recipients and donors. Mistrust about equity in the organ allocation process also contributed to ambivalence. The discordance between patients' perceptions of listing status and actual status suggests communication gaps between African American hemodialysis patients and physicians. Clinicians should avoid interpreting ambivalence about transplantation as lack of interest.</description><identifier>ISSN: 0041-1345</identifier><identifier>EISSN: 1873-2623</identifier><identifier>DOI: 10.1016/j.transproceed.2015.01.016</identifier><identifier>PMID: 25769556</identifier><language>eng</language><publisher>United States: Elsevier Inc</publisher><subject>Adult ; Aged ; Aged, 80 and over ; Black or African American - psychology ; Communication ; Female ; Healthcare Disparities ; Humans ; Kidney Transplantation - psychology ; Male ; Middle Aged ; Patient Preference - ethnology ; Patient Preference - psychology ; Perception ; Qualitative Research ; Renal Dialysis - psychology ; Surgery ; Trust ; United States ; White People</subject><ispartof>Transplantation proceedings, 2015-03, Vol.47 (2), p.240-246</ispartof><rights>2015</rights><rights>Published by Elsevier Inc.</rights><lds50>peer_reviewed</lds50><oa>free_for_read</oa><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-c542t-d61cd359c9d16859d4965980d90b3298a213c1fd52ec37ff12945c7c4b519fee3</citedby><cites>FETCH-LOGICAL-c542t-d61cd359c9d16859d4965980d90b3298a213c1fd52ec37ff12945c7c4b519fee3</cites></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><linktohtml>$$Uhttps://dx.doi.org/10.1016/j.transproceed.2015.01.016$$EHTML$$P50$$Gelsevier$$H</linktohtml><link.rule.ids>230,314,780,784,885,3550,27924,27925,45995</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/25769556$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>Wachterman, M.W</creatorcontrib><creatorcontrib>McCarthy, E.P</creatorcontrib><creatorcontrib>Marcantonio, E.R</creatorcontrib><creatorcontrib>Ersek, M</creatorcontrib><title>Mistrust, Misperceptions, and Miscommunication: A Qualitative Study of Preferences About Kidney Transplantation Among African Americans</title><title>Transplantation proceedings</title><addtitle>Transplant Proc</addtitle><description>Abstract Background Kidney transplantation rates in the United States are lower among African Americans than among whites. Well-documented racial disparities in access to transplantation explain some, but not all, of these differences. Prior survey-based research suggests that African American dialysis patients are less likely than whites to desire transplantation, but little research has focused on an in-depth exploration of preferences about kidney transplantation among African Americans. Thus, the purposes of this study were to explore preferences and to compare patients' expectations about transplantation with actual status on the transplant list. Methods We conducted semistructured interviews with 16 African Americans receiving chronic hemodialysis. We analyzed the interviews using the constant comparative method of qualitative analysis. We also reviewed the dialysis center's transplant list. Results Four dominant themes emerged: (1) varied desire for transplant; (2) concerns about donor source; (3) barriers to transplantation; and (4) lack of communication with nephrologists and the transplantation team. A thread of mistrust about equity in the transplantation process flowed through themes 2–4. In 7/16 cases, patients' understanding of their transplant listing status was discordant with their actual status. Conclusions Our study suggests that many African Americans on hemodialysis are interested in kidney transplantation, but that interest is often tempered by concerns about transplantation, including misconceptions about the risks to recipients and donors. Mistrust about equity in the organ allocation process also contributed to ambivalence. The discordance between patients' perceptions of listing status and actual status suggests communication gaps between African American hemodialysis patients and physicians. Clinicians should avoid interpreting ambivalence about transplantation as lack of interest.</description><subject>Adult</subject><subject>Aged</subject><subject>Aged, 80 and over</subject><subject>Black or African American - psychology</subject><subject>Communication</subject><subject>Female</subject><subject>Healthcare Disparities</subject><subject>Humans</subject><subject>Kidney Transplantation - psychology</subject><subject>Male</subject><subject>Middle Aged</subject><subject>Patient Preference - ethnology</subject><subject>Patient Preference - psychology</subject><subject>Perception</subject><subject>Qualitative Research</subject><subject>Renal Dialysis - psychology</subject><subject>Surgery</subject><subject>Trust</subject><subject>United States</subject><subject>White People</subject><issn>0041-1345</issn><issn>1873-2623</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2015</creationdate><recordtype>article</recordtype><sourceid>EIF</sourceid><recordid>eNqNUk1vEzEQXSEQLYW_gCxOHJrgsdfOuodKUfkURYBaztbGni0Ou3awvZHyC_jbeJNSFU5IljwzfvNmPG-q6gXQOVCQr9bzHFufNjEYRDtnFMScQjnyQXUMzYLPmGT8YXVMaQ0z4LU4qp6ktKbFZzV_XB0xsZBKCHlc_frkUo5jyqekWBuMBjfZBZ9OSevtFDNhGEbvTDuFz8iSfB3b3uXibpFc5dHuSOjIl4gdRvQGE1muwpjJR2c97sj1vtW-9XlPQJZD8Ddk2cXCOHm4N9LT6lHX9gmf3d4n1be3b64v3s8uP7_7cLG8nBlRszyzEozlQhllQTZC2VpJoRpqFV1xppqWATfQWcHQ8EXXAVO1MAtTrwSoDpGfVOcH3s24GtAa9GWWvd5EN7Rxp0Pr9N8v3n3XN2Gray5FDU0heHlLEMPPEVPWQ5kR9uWHGMakQUreqAVwVqBnB6iJIaUyoLsyQPWkpF7r-0rqSUlNoRxZkp_fb_Qu9Y90BfD6AMAyrq3DqJNxkwDWRTRZ2-D-r875PzSmd5Pc_Q_cYVqHMfoiiAadmKb6atqpaaVAlHVSTPDf1nLPMA</recordid><startdate>20150301</startdate><enddate>20150301</enddate><creator>Wachterman, M.W</creator><creator>McCarthy, E.P</creator><creator>Marcantonio, E.R</creator><creator>Ersek, M</creator><general>Elsevier Inc</general><scope>CGR</scope><scope>CUY</scope><scope>CVF</scope><scope>ECM</scope><scope>EIF</scope><scope>NPM</scope><scope>AAYXX</scope><scope>CITATION</scope><scope>7X8</scope><scope>5PM</scope></search><sort><creationdate>20150301</creationdate><title>Mistrust, Misperceptions, and Miscommunication: A Qualitative Study of Preferences About Kidney Transplantation Among African Americans</title><author>Wachterman, M.W ; McCarthy, E.P ; Marcantonio, E.R ; Ersek, M</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c542t-d61cd359c9d16859d4965980d90b3298a213c1fd52ec37ff12945c7c4b519fee3</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2015</creationdate><topic>Adult</topic><topic>Aged</topic><topic>Aged, 80 and over</topic><topic>Black or African American - psychology</topic><topic>Communication</topic><topic>Female</topic><topic>Healthcare Disparities</topic><topic>Humans</topic><topic>Kidney Transplantation - psychology</topic><topic>Male</topic><topic>Middle Aged</topic><topic>Patient Preference - ethnology</topic><topic>Patient Preference - psychology</topic><topic>Perception</topic><topic>Qualitative Research</topic><topic>Renal Dialysis - psychology</topic><topic>Surgery</topic><topic>Trust</topic><topic>United States</topic><topic>White People</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>Wachterman, M.W</creatorcontrib><creatorcontrib>McCarthy, E.P</creatorcontrib><creatorcontrib>Marcantonio, E.R</creatorcontrib><creatorcontrib>Ersek, M</creatorcontrib><collection>Medline</collection><collection>MEDLINE</collection><collection>MEDLINE (Ovid)</collection><collection>MEDLINE</collection><collection>MEDLINE</collection><collection>PubMed</collection><collection>CrossRef</collection><collection>MEDLINE - Academic</collection><collection>PubMed Central (Full Participant titles)</collection><jtitle>Transplantation proceedings</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>Wachterman, M.W</au><au>McCarthy, E.P</au><au>Marcantonio, E.R</au><au>Ersek, M</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>Mistrust, Misperceptions, and Miscommunication: A Qualitative Study of Preferences About Kidney Transplantation Among African Americans</atitle><jtitle>Transplantation proceedings</jtitle><addtitle>Transplant Proc</addtitle><date>2015-03-01</date><risdate>2015</risdate><volume>47</volume><issue>2</issue><spage>240</spage><epage>246</epage><pages>240-246</pages><issn>0041-1345</issn><eissn>1873-2623</eissn><abstract>Abstract Background Kidney transplantation rates in the United States are lower among African Americans than among whites. Well-documented racial disparities in access to transplantation explain some, but not all, of these differences. Prior survey-based research suggests that African American dialysis patients are less likely than whites to desire transplantation, but little research has focused on an in-depth exploration of preferences about kidney transplantation among African Americans. Thus, the purposes of this study were to explore preferences and to compare patients' expectations about transplantation with actual status on the transplant list. Methods We conducted semistructured interviews with 16 African Americans receiving chronic hemodialysis. We analyzed the interviews using the constant comparative method of qualitative analysis. We also reviewed the dialysis center's transplant list. Results Four dominant themes emerged: (1) varied desire for transplant; (2) concerns about donor source; (3) barriers to transplantation; and (4) lack of communication with nephrologists and the transplantation team. A thread of mistrust about equity in the transplantation process flowed through themes 2–4. In 7/16 cases, patients' understanding of their transplant listing status was discordant with their actual status. Conclusions Our study suggests that many African Americans on hemodialysis are interested in kidney transplantation, but that interest is often tempered by concerns about transplantation, including misconceptions about the risks to recipients and donors. Mistrust about equity in the organ allocation process also contributed to ambivalence. The discordance between patients' perceptions of listing status and actual status suggests communication gaps between African American hemodialysis patients and physicians. 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subjects Adult
Aged
Aged, 80 and over
Black or African American - psychology
Communication
Female
Healthcare Disparities
Humans
Kidney Transplantation - psychology
Male
Middle Aged
Patient Preference - ethnology
Patient Preference - psychology
Perception
Qualitative Research
Renal Dialysis - psychology
Surgery
Trust
United States
White People
title Mistrust, Misperceptions, and Miscommunication: A Qualitative Study of Preferences About Kidney Transplantation Among African Americans
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