End-of-Life Care and African Americans: Voices from the Community

Jenkins, Carolyn; LaPelle, Nancy R.; Zapka, Jane G.; Kurent, Jerome E.

doi:10.1089/jpm.2005.8.585

Cited by 55 publications

(54 citation statements)

References 31 publications

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“…Reasons for the observed racial differences in patterns of end-of-life care are likely complex and reflect a variety of different factors, including differences in preferences (35)(36)(37)(38), differences in the hospitals where patients are treated (39,40), differential access to care (41)(42)(43), differences in cultural, spiritual, and religious beliefs (44)(45)(46)(47), differences in education and health literacy (48), and mistrust of the medical system (49). Prior studies evaluating racial differences in patterns of end-of-life care among patients with ESRD have not described the extent to which these factors may vary geographically.…”

Section: Discussionmentioning

confidence: 99%

Geographic Variation in Black–White Differences in End-of-Life Care for Patients with ESRD

Thomas¹,

Rodriguez

Robinson‐Cohen

et al. 2013

Clinical Journal of the American Society of Nephrology

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SummaryBackground and objectives Patterns of end-of-life care among patients with ESRD differ by race. Whether the magnitude of racial differences in end-of-life care varies across regions is not known.Design, setting, participants, & measurements This observational cohort study used data from the US Renal Data System and regional health care spending patterns from the Dartmouth Atlas of Healthcare. The cohort included 101,331 black and white patients 18 years and older who initiated chronic dialysis or received a kidney transplant between June 1, 2005, and September 31, 2008, and died before October 1, 2009. Black-white differences in the odds of in-hospital death, dialysis discontinuation, and hospice referral by quintile of end-of-life expenditure index (EOL-EI) were examined.Results In adjusted analyses, the odds ratios for dialysis discontinuation for black versus white patients ranged from 0.47 (95% confidence interval=0.43 to 0.51) in the highest quintile of EOL-EI to 0.63 (95% confidence interval=0.54 to 0.74) in the lowest quintile (P for interaction,0.001). Hospice referral ranged from 0.55 (95% confidence interval=0.50 to 0.60) in the highest quintile of EOL-EI to 0.82 (95% confidence interval=0.69 to 0.96) in the lowest quintile (P for interaction,0.001). The association of race with in-hospital death also differed in magnitude across quintiles of EOL-EI, ranging from 1.21 (95% confidence interval=1.08 to 1.35) in the highest quintile of EOL-EI to 1.47 (95% confidence interval=1.27 to 1.71) in the second quintile (P for interaction,0.001).Conclusions There are pronounced black-white differences in patterns of hospice referral and dialysis discontinuation among patients with ESRD that vary substantially across regions of the United States.

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Section: Discussionmentioning

confidence: 99%

Geographic Variation in Black–White Differences in End-of-Life Care for Patients with ESRD

Thomas¹,

Rodriguez

Robinson‐Cohen

et al. 2013

Clinical Journal of the American Society of Nephrology

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“…A few other studies have focused on the decision-making experience of racially and ethnically diverse surrogates deciding for seriously ill patients, but rather addressed their treatment preferences 7 or problems with health care provider communication. 27 The dominant theme in our analysis is the tremendous burden of decision-making surrogates experienced that transcended race/ethnicity. Surrogates reported feeling burdened in their expected role in medical, personal, and family domains.…”

Section: Discussionmentioning

confidence: 99%

“…2,10,[22][23][24][25][26] Rare studies have considered the experience in terms of how race or ethnicity relates to surrogate decision making and then have focused on the African American perspective. 7,27 Much less is known about the decision-making experiences of Hispanic surrogates, despite the fact that Hispanics represent the fastest growing minority group among older adults in the United States. 28 The goals of this study were to describe self-reported experiences of surrogate end-of-life decision-making and to generate hypotheses about the relationship of race, ethnicity, and culture to that experience.…”

Section: Introductionmentioning

confidence: 99%

Voices of African American, Caucasian, and Hispanic Surrogates on the Burdens of End-of-Life Decision Making

et al. 2008

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“…Content analysis as described by Strauss and Corbin (1998) was used to search the data for meaningful categories. The goal of this method is the generation of themes and concepts that emerge to describe an experience (Glaser & Strauss, 1967;Speziale & Carpenter, 2002), and has been successfully implemented in focus group data analysis (Jenkins, Lapelle, Zapka, & Kurent, 2005;Lasch et al, 2000). Focus group sessions were coded by conceptualizing underlying patterns in the data related to perceptions of risk factors, health promotion, and disease prevention behaviors related to hypertension.…”

Section: Discussionmentioning

confidence: 99%

The Burden of Hypertension: Mental Representations of African American Women

Webb

Gonzalez

2006

Issues in Mental Health Nursing

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A qualitative study using focus groups to explore African American women's mental representations of hypertension was conducted with 47 participants. The ability of participants to select and perform rational procedures for threat management also was explored. Leventhal's Self-Regulation Process Model was used to guide the development of the study. African American women (mean age 50.11 years) were recruited from community settings to participate in focus groups. Transcripts from the focus groups were coded and analyzed using comparative analysis. Four themes were generated from the women's mental representations: (1) Vulnerability and Inevitability, (2) Biobehavioral Assaults, (3) Barriers to Effective Management, and (4) Culturally Relevant Remedies. Hypertension was perceived as a significant disease threat; causality was associated with risk factors interacting within the context of psychological stress. Acquiring a clear perspective of how African American women perceive hypertension and their ability to reduce risk factors can assist in developing a model for stimulating the use of health promotive behavior.

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End-of-Life Care and African Americans: Voices from the Community

Abstract: Findings suggest important clinical implications for clinicians and other health professionals. These voices from the community remind us of the heterogeneity in needs and preferences and challenge us to listen and tailor communication to each patient and their families.

Cited by 55 publications

References 31 publications

Geographic Variation in Black–White Differences in End-of-Life Care for Patients with ESRD

Geographic Variation in Black–White Differences in End-of-Life Care for Patients with ESRD

Voices of African American, Caucasian, and Hispanic Surrogates on the Burdens of End-of-Life Decision Making

The Burden of Hypertension: Mental Representations of African American Women

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