Identifying and addressing barriers to African American and non-African American families' discussions about preemptive living related kidney transplantation

Leigh Boulware, Felicia Hill-Briggs, Edward Kraus, J. Keith Melancon, Mikiko Senga, Kira E. Evans, Misty U. Troll, Patti L Ephraim, Bernard Jaar, Donna I. Myers, Raquel McGuire, Brenda Falcone, Bobbie Bonhage, Neil R. Powe

Research output: Contribution to journalArticle

Abstract

Context: Ethnic/racial minority and nonminority families' perceived barriers to discussing preemptive living related kidney transplantation (LRKT) and their views on the potential value of health care professionals trained to address barriers are unknown. Objective, Setting, and Participants: To collect pilot data for evaluating perceived barriers to preemptive LRKT and to inform the development of a culturally sensitive intervention to improve families' consideration of LRKT. In 4 structured group interviews of African American and non-African American patients (2 groups) with progressing chronic kidney disease and their family members (2 groups), participants' perceived barriers to initiating LRKT discussions and their views regarding the value of social workers to support discussions were explored. Results: Patients' barriers included concerns about their (1) ability to initiate discussions, (2) discussions being misinterpreted as donation requests, (3) potential burdening of family members, (4) uncertainty about when to initiate discussions, and (5) inducing guilt or coercing family members. Family members' barriers included (1) feeling overwhelmed by patients' illness, (2) patients' denial about their illness, (3) caregiver stress, and (4) uncertainty about their own health or the health of other family members who might donate or need a kidney in the future. Participants reported that social workers could facilitate difficult or awkward discussions and help families understand the LRKT process, address financial concerns, and cope emotionally. Themes were similar between African Americans and non-African Americans. Conclusions: Families identified several barriers to discussing preemptive LRKT that could be addressed by social workers. Further research must be done to determine whether social workers need to tailor interventions to address families' cultural differences.

Original languageEnglish (US)
Pages (from-to)97-105
Number of pages9
JournalProgress in Transplantation
Volume21
Issue number2
StatePublished - Jun 1 2011

Fingerprint

African Americans
Kidney Transplantation
Uncertainty
Aptitude
Guilt
Health
Chronic Renal Insufficiency
Caregivers
Emotions
Interviews
Delivery of Health Care
Kidney
Social Workers
Research

ASJC Scopus subject areas

  • Transplantation

Cite this

Identifying and addressing barriers to African American and non-African American families' discussions about preemptive living related kidney transplantation. / Boulware, Leigh; Hill-Briggs, Felicia; Kraus, Edward; Melancon, J. Keith; Senga, Mikiko; Evans, Kira E.; Troll, Misty U.; Ephraim, Patti L; Jaar, Bernard; Myers, Donna I.; McGuire, Raquel; Falcone, Brenda; Bonhage, Bobbie; Powe, Neil R.

In: Progress in Transplantation, Vol. 21, No. 2, 01.06.2011, p. 97-105.

Research output: Contribution to journalArticle

Boulware, Leigh ; Hill-Briggs, Felicia ; Kraus, Edward ; Melancon, J. Keith ; Senga, Mikiko ; Evans, Kira E. ; Troll, Misty U. ; Ephraim, Patti L ; Jaar, Bernard ; Myers, Donna I. ; McGuire, Raquel ; Falcone, Brenda ; Bonhage, Bobbie ; Powe, Neil R. / Identifying and addressing barriers to African American and non-African American families' discussions about preemptive living related kidney transplantation. In: Progress in Transplantation. 2011 ; Vol. 21, No. 2. pp. 97-105.
@article{f62526f62abc441e922f34dbf03a076f,
title = "Identifying and addressing barriers to African American and non-African American families' discussions about preemptive living related kidney transplantation",
abstract = "Context: Ethnic/racial minority and nonminority families' perceived barriers to discussing preemptive living related kidney transplantation (LRKT) and their views on the potential value of health care professionals trained to address barriers are unknown. Objective, Setting, and Participants: To collect pilot data for evaluating perceived barriers to preemptive LRKT and to inform the development of a culturally sensitive intervention to improve families' consideration of LRKT. In 4 structured group interviews of African American and non-African American patients (2 groups) with progressing chronic kidney disease and their family members (2 groups), participants' perceived barriers to initiating LRKT discussions and their views regarding the value of social workers to support discussions were explored. Results: Patients' barriers included concerns about their (1) ability to initiate discussions, (2) discussions being misinterpreted as donation requests, (3) potential burdening of family members, (4) uncertainty about when to initiate discussions, and (5) inducing guilt or coercing family members. Family members' barriers included (1) feeling overwhelmed by patients' illness, (2) patients' denial about their illness, (3) caregiver stress, and (4) uncertainty about their own health or the health of other family members who might donate or need a kidney in the future. Participants reported that social workers could facilitate difficult or awkward discussions and help families understand the LRKT process, address financial concerns, and cope emotionally. Themes were similar between African Americans and non-African Americans. Conclusions: Families identified several barriers to discussing preemptive LRKT that could be addressed by social workers. Further research must be done to determine whether social workers need to tailor interventions to address families' cultural differences.",
author = "Leigh Boulware and Felicia Hill-Briggs and Edward Kraus and Melancon, {J. Keith} and Mikiko Senga and Evans, {Kira E.} and Troll, {Misty U.} and Ephraim, {Patti L} and Bernard Jaar and Myers, {Donna I.} and Raquel McGuire and Brenda Falcone and Bobbie Bonhage and Powe, {Neil R.}",
year = "2011",
month = "6",
day = "1",
language = "English (US)",
volume = "21",
pages = "97--105",
journal = "Progress in Transplantation",
issn = "1526-9248",
publisher = "InnoVision Communications",
number = "2",

}

TY - JOUR

T1 - Identifying and addressing barriers to African American and non-African American families' discussions about preemptive living related kidney transplantation

AU - Boulware, Leigh

AU - Hill-Briggs, Felicia

AU - Kraus, Edward

AU - Melancon, J. Keith

AU - Senga, Mikiko

AU - Evans, Kira E.

AU - Troll, Misty U.

AU - Ephraim, Patti L

AU - Jaar, Bernard

AU - Myers, Donna I.

AU - McGuire, Raquel

AU - Falcone, Brenda

AU - Bonhage, Bobbie

AU - Powe, Neil R.

PY - 2011/6/1

Y1 - 2011/6/1

N2 - Context: Ethnic/racial minority and nonminority families' perceived barriers to discussing preemptive living related kidney transplantation (LRKT) and their views on the potential value of health care professionals trained to address barriers are unknown. Objective, Setting, and Participants: To collect pilot data for evaluating perceived barriers to preemptive LRKT and to inform the development of a culturally sensitive intervention to improve families' consideration of LRKT. In 4 structured group interviews of African American and non-African American patients (2 groups) with progressing chronic kidney disease and their family members (2 groups), participants' perceived barriers to initiating LRKT discussions and their views regarding the value of social workers to support discussions were explored. Results: Patients' barriers included concerns about their (1) ability to initiate discussions, (2) discussions being misinterpreted as donation requests, (3) potential burdening of family members, (4) uncertainty about when to initiate discussions, and (5) inducing guilt or coercing family members. Family members' barriers included (1) feeling overwhelmed by patients' illness, (2) patients' denial about their illness, (3) caregiver stress, and (4) uncertainty about their own health or the health of other family members who might donate or need a kidney in the future. Participants reported that social workers could facilitate difficult or awkward discussions and help families understand the LRKT process, address financial concerns, and cope emotionally. Themes were similar between African Americans and non-African Americans. Conclusions: Families identified several barriers to discussing preemptive LRKT that could be addressed by social workers. Further research must be done to determine whether social workers need to tailor interventions to address families' cultural differences.

AB - Context: Ethnic/racial minority and nonminority families' perceived barriers to discussing preemptive living related kidney transplantation (LRKT) and their views on the potential value of health care professionals trained to address barriers are unknown. Objective, Setting, and Participants: To collect pilot data for evaluating perceived barriers to preemptive LRKT and to inform the development of a culturally sensitive intervention to improve families' consideration of LRKT. In 4 structured group interviews of African American and non-African American patients (2 groups) with progressing chronic kidney disease and their family members (2 groups), participants' perceived barriers to initiating LRKT discussions and their views regarding the value of social workers to support discussions were explored. Results: Patients' barriers included concerns about their (1) ability to initiate discussions, (2) discussions being misinterpreted as donation requests, (3) potential burdening of family members, (4) uncertainty about when to initiate discussions, and (5) inducing guilt or coercing family members. Family members' barriers included (1) feeling overwhelmed by patients' illness, (2) patients' denial about their illness, (3) caregiver stress, and (4) uncertainty about their own health or the health of other family members who might donate or need a kidney in the future. Participants reported that social workers could facilitate difficult or awkward discussions and help families understand the LRKT process, address financial concerns, and cope emotionally. Themes were similar between African Americans and non-African Americans. Conclusions: Families identified several barriers to discussing preemptive LRKT that could be addressed by social workers. Further research must be done to determine whether social workers need to tailor interventions to address families' cultural differences.

UR - http://www.scopus.com/inward/record.url?scp=79961193549&partnerID=8YFLogxK

UR - http://www.scopus.com/inward/citedby.url?scp=79961193549&partnerID=8YFLogxK

M3 - Article

C2 - 21736237

AN - SCOPUS:79961193549

VL - 21

SP - 97

EP - 105

JO - Progress in Transplantation

JF - Progress in Transplantation

SN - 1526-9248

IS - 2

ER -