scholarly journals Cognitive mapping as an approach to facilitate organ donation among African Americans

2021 ◽  
Vol 104 (3) ◽  
pp. 003685042110294
Author(s):  
Jayme E Locke ◽  
Rhiannon D Reed ◽  
Richard M Shewchuk ◽  
Katherine L Stegner ◽  
Haiyan Qu
Keyword(s):  
Decision Making ◽  
African Americans ◽  
Organ Donation ◽  
Cognitive Mapping ◽  
The United States ◽  
Two Dimensions ◽  
Nominal Group ◽  
Solid Organ ◽  
Related Information ◽  
Empirical Framework

Making up 13.4% of the United States population, African Americans (AAs) account for 28.7% of candidates who are currently waiting for an organ donation. AAs are disproportionately affected by end-organ disease, particularly kidney disease, therefore, the need for transplantation among this population is high, and the high need is also observed for other solid organ transplantation. To this end, we worked with the AA community to derive an empirical framework of organ donation strategies that may facilitate AA decision-making. We used a cognitive mapping approach involving two distinct phases of primary data collection and a sequence of data analytic procedures to elicit and systematically organize strategies for facilitating organ donation. AA adults ( n = 89) sorted 27 strategies identified from nominal group technique meetings in phase 1 based on their perceived similarities. Sorting data were aggregated and analyzed using Multidimensional scaling and hierarchical cluster analyses. Among 89 AA participants, 68.2% were female, 65.5% obtained > high school education, 69.5% reported annual household income ≤ $50,000. The average age was 47.4 years (SD = 14.5). Derived empirical framework consisted of five distinct clusters: fundamental knowledge, psychosocial support, community awareness, community engagement, and system accountability; and two dimensions: Approach, Donor-related Information. The derived empirical framework reflects an organization scheme that may facilitate AA decision-making about organ donation and suggests that targeted dissemination of donor-related information at both the individual-donor and community levels may be critical for increasing donation rates among AAs.

Using Online Communication Skills Training to Increase Organ Donation Authorization

2020 ◽  
Vol 30 (3) ◽  
pp. 212-219 ◽  
Author(s):  
Laura A. Siminoff ◽  
Heather M. Gardiner ◽  
Gerard P. Alolod ◽  
Maureen Wilson-Genderson
Keyword(s):  
Organ Donation ◽  
Communication Skills ◽  
Online Communication ◽  
Skills Training ◽  
The United States ◽  
Individual Performance ◽  
Decision Makers ◽  
Evidence Based ◽  
Solid Organ ◽  
Family Decision

Introduction: Family denial of organ donation from deceased donor-eligible patients is a major contributor to the deficit of transplantable organs in the United States. Research Question: Does an evidence-based communication intervention improve deceased organ donor authorization rates from family decision-makers? Design: This implementation and dissemination study used Communicating Effectively about Donation on Organ Procurement Organization professionals responsible for discussing donation and obtaining authorization from family decision-makers. A 14-month, nationwide social marketing campaign generated a sample of 682 requesters, yielding a final analyzable sample of 253 participants. Serving as their own controls, participants spent the first 3 months in a preintervention period, completed the web-based intervention, and progressed to a 3-month postintervention period. Participants completed brief online weekly surveys to assess the intervention’s impact on their communication skills. Results: Authorization rates did not improve overall between the pre- and postintervention periods. A differential effect of the intervention on 3 distinct groups of requesters was found: one group exhibited high and stable authorization rates pre–post (78%-74%); a second group had low initial authorization rates that increased after exposure to the intervention (46%-73%); the third had low and variable rates of authorization that failed to improve after the intervention (45%-36%). Conclusion: This study underscores the value of evidence-based communication training. Training targeted to requesters’ skill levels is needed to realize overall improvements in individual performance, the quality of donation discussions, and rates of family decision-maker authorization to solid organ donation.

scholarly journals Identification of Strategies to Facilitate Organ Donation among African Americans using the Nominal Group Technique

2015 ◽  
Vol 10 (2) ◽  
pp. 286-293 ◽  
Author(s):  
Jayme E. Locke ◽  
Haiyan Qu ◽  
Richard Shewchuk ◽  
Roslyn B. Mannon ◽  
Robert Gaston ◽  
...  
Keyword(s):  
African Americans ◽  
Organ Donation ◽  
Nominal Group Technique ◽  
Nominal Group ◽  
Group Technique

scholarly journals Who gets a lung transplant? Assessing the psychosocial decision-making process for transplant listing

2016 ◽  
Vol 2016 (3) ◽  
Author(s):  
Amber N Lewandowski ◽  
Jared Lyon Skillings
Keyword(s):  
Decision Making ◽  
Moral Distress ◽  
Solid Organ Transplantation ◽  
The United States ◽  
Waiting List ◽  
Decision Making Process ◽  
Solid Organ ◽  
Regulatory Bodies ◽  
The Impact ◽  
Donor Organs

In the United States, there is a significant shortage of available donor organs. This requires transplant professionals to hold simultaneous, yet divergent roles as (1) advocates for patients who are in need of a lifesaving transplant, and (2) responsible stewards in the allocation of scarce donor organs. In order to balance these roles, most transplant teams utilize a committee based decision-making process to select suitable candidates for the transplant waiting list. These committees use medical and psychosocial criteria to guide their decision to list a patient. Transplant regulatory bodies have established medical standards for identifying appropriate medical candidates for transplantation. However, transplant regulatory bodies have not developed policies to standardize psychosocial criteria for listing patients. This affords transplant centers the autonomy to develop their own psychosocial criteria for determining which patients will be placed on the transplant waiting list. This lack of a standardized policy has resulted in inconsistent psychosocial practices amongst transplant centers nationwide. Since there has been no formal review of the inconsistency in psychosocial policy and practice, this paper seeks to explore the non-standardized psychosocial approach to organ transplant listing. The authors review factors that are relevant to the standardization of the psychosocial decision-making process, including shared decision-making, clinician judgment, bias in decision-making and moral distress in transplant staff. We conclude with a discussion about the impact of these issues on psychosocial practices in solid organ transplantation. 

Family Discussion about Organ Donation among African Americans

2003 ◽  
Vol 13 (1) ◽  
pp. 28-32 ◽  
Author(s):  
Lamon Atkins ◽  
Kimberly Davis ◽  
Samuel M. Holtzman ◽  
Roger Durand ◽  
Phillip J. Decker
Keyword(s):  
African American ◽  
African Americans ◽  
Focus Groups ◽  
Organ Donation ◽  
Function Analysis ◽  
The United States ◽  
Religious Attendance ◽  
Cross Sectional Survey ◽  
Cross Sectional ◽  
Diffuse Support

Context Relatively little is known about family discussion concerning donation among African Americans in the United States, especially discussion predating the brain death of a family member and the donor request process. Objectives To explore the inclination of African Americans to engage in family discussion about organ donation and the characteristics of those who expressed a desire to their families to donate their organs upon death. Design Focus groups and a cross-sectional survey. Setting A large metropolitan complex in Houston, Tex, with a relatively sizeable African American population. Participants A total of 18 persons of African American background participated in 2 focus groups; 375 randomly selected African American residents were surveyed by questionnaire. Main Outcome Measure Prodonation family discussion. Results Only 10% of subjects were found to be in the “action” (having had a prodonation discussion) or “maintenance” (having had a prodonation discussion and not inclined to alter one's wishes) stages with regard to family discussion. These subjects were not found distinguished from others by age, gender, education, or frequency of religious attendance. They were, however, found differentiated from others by feelings of diffuse support for donation, knowledge of donation, having read or heard a lot about donation, and by the belief that organ donation was not against one's religion—when these variables were individually considered. Yet, when these variables were simultaneously considered in a multivariate discriminant function analysis, diffuse support for donation no longer distinguished those in the action/maintenance stage from other subjects.

Organ Donation Education for African Americans in the United States

2017 ◽  
Vol 101 ◽  
pp. S55
Author(s):  
Kimberly Arriola ◽  
Nakeva Redmond ◽  
Nancy J. Thompson ◽  
Jennie P. Perryman ◽  
Rachel E. Patzer
Keyword(s):  
United States ◽  
African Americans ◽  
Organ Donation ◽  
The United States

scholarly journals If I’m Worrying About Getting Well, How Can I Get Well? Decision-Making among African Americans with Advanced CKD

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 917-917
Author(s):  
Tyrone Hamler ◽  
Megan Schmidt-Sane ◽  
Anne Huml ◽  
Mirela Dobre ◽  
Donna Taylor
Keyword(s):  
Chronic Kidney Disease ◽  
Decision Making ◽  
African Americans ◽  
Kidney Disease ◽  
Shared Decision Making ◽  
The United States ◽  
Social Work Practice ◽  
Health Concern ◽  
Shared Decision ◽  
Older African Americans

Abstract Objectives: Chronic kidney disease (CKD) is an emerging major public health concern in the United States. Shared decision-making (SDM) has gained attention as an important area of inquiry in chronic kidney disease research. Few studies focus on shared decision-making or preferences of older African Americans during the advanced stages of CKD before the initiation of dialysis. The objective of this study was to understand decision-making preferences and shared decision-making among older African Americans with advanced chronic kidney disease who have yet to start dialysis. Methods: Data were collected from an outpatient clinic sample of older African Americans ≥ 55 years old (N = 10) diagnosed with advanced CKD. Participants were administered a survey with open-ended questions related to shared decision-making, CKD healthcare and general healthcare preferences (both open-ended and closed-ended questions), and participant characteristics. A thematic analysis framework was applied to identify themes and patterns in the data. Results: Several themes emerged in regard to shared decision-making and patient preferences including: complexity of CKD management, uncertainty of prognosis, barriers and facilitators to CKD self-management and SDM, diagnosis and dialysis information, elements of SDM, and the structural and social context of SDM related to racial inequities. Discussion: Participants identified a nuanced understanding of the concerns related to managing CKD. The complex and ever-changing nature of CKD was emphasized as participants discussed how they perceived their care needs. This study provides implications for social work practice, healthcare policy and interprofessional collaboration in the care of older African Americans.

Understanding the pros and cons of organ donation decision-making: Decisional balance and expressing donation intentions among African Americans

2018 ◽  
Vol 25 (10-11) ◽  
pp. 1612-1623 ◽  
Author(s):  
Shauna St. Clair Flemming ◽  
Nakeva Redmond ◽  
Dana HZ Williamson ◽  
Nancy J Thompson ◽  
Jennie P Perryman ◽  
...  
Keyword(s):  
Decision Making ◽  
African Americans ◽  
Organ Donation ◽  
Transtheoretical Model ◽  
Decisional Balance ◽  
Donor Kidney ◽  
Public Commitment ◽  
Pros And Cons ◽  
Stage Renal Disease ◽  
End Stage

Increasing public commitment to organ donation is critical to improving donor kidney availability for end-stage renal disease patients desiring transplant. This study surveyed ( N = 1339) African Americans, measuring perceived pros relative to cons of organ donation, to evaluate an existing Transtheoretical Model decisional balance scale and associations between decisional balance and expressing donation intentions. Findings supported the existing scale structure. More positive decisional balance ratios were associated with 1.76 times the odds of expressing intentions (95% confidence interval = 1.52–2.04). Pros were more strongly linked to donation intentions than cons. Greater understanding of organ donation decision-making is valuable for informing interventions that encourage donation.

Solid organ donation after death in the United States: Data‐driven messaging to encourage potential donors

2020 ◽  
Vol 20 (6) ◽  
pp. 1642-1649 ◽  
Author(s):  
Kiran Bambha ◽  
Alexandra Shingina ◽  
Jennifer L. Dodge ◽  
Kevin O’Connor ◽  
Sue Dunn ◽  
...  
Keyword(s):  
United States ◽  
Organ Donation ◽  
The United States ◽  
Data Driven ◽  
Solid Organ ◽  
States Data

scholarly journals Patient and Caregiver Priorities for Outcomes in Peritoneal Dialysis

2018 ◽  
Vol 14 (1) ◽  
pp. 74-83 ◽  
Author(s):  
Karine E. Manera ◽  
David W. Johnson ◽  
Jonathan C. Craig ◽  
Jenny I. Shen ◽  
Lorena Ruiz ◽  
...  
Keyword(s):  
United States ◽  
Decision Making ◽  
Hong Kong ◽  
Peritoneal Dialysis ◽  
Shared Decision Making ◽  
The United States ◽  
Nominal Group ◽  
Shared Decision ◽  
Importance Score ◽  
Patient Centered

Background and objectivesThe absence of accepted patient-centered outcomes in research can limit shared decision-making in peritoneal dialysis (PD), particularly because PD-related treatments can be associated with mortality, technique failure, and complications that can impair quality of life. We aimed to identify patient and caregiver priorities for outcomes in PD, and to describe the reasons for their choices.Design, setting, participants, & measurementsPatients on PD and their caregivers were purposively sampled from nine dialysis units across Australia, the United States, and Hong Kong. Using nominal group technique, participants identified and ranked outcomes, and discussed the reasons for their choices. An importance score (scale 0–1) was calculated for each outcome. Qualitative data were analyzed thematically.ResultsAcross 14 groups, 126 participants (81 patients, 45 caregivers), aged 18–84 (mean 54, SD 15) years, identified 56 outcomes. The ten highest ranked outcomes were PD infection (importance score, 0.27), mortality (0.25), fatigue (0.25), flexibility with time (0.18), BP (0.17), PD failure (0.16), ability to travel (0.15), sleep (0.14), ability to work (0.14), and effect on family (0.12). Mortality was ranked first in Australia, second in Hong Kong, and 15th in the United States. The five themes were serious and cascading consequences on health, current and impending relevance, maintaining role and social functioning, requiring constant vigilance, and beyond control and responsibility.ConclusionsFor patients on PD and their caregivers, PD-related infection, mortality, and fatigue were of highest priority, and were focused on health, maintaining lifestyle, and self-management. Reporting these patient-centered outcomes may enhance the relevance of research to inform shared decision-making.

Donor Designation Among Mature Latinas and Lay Health Educators (Promotoras): A Mixed-Methods Study

2020 ◽  
pp. 109019812097635
Author(s):  
Elisa J. Gordon ◽  
Heather Gardiner ◽  
Laura A. Siminoff ◽  
Patrick J. Kelly ◽  
Chidera Agu ◽  
...  
Keyword(s):  
Organ Donation ◽  
San Antonio ◽  
Public Attitudes ◽  
The United States ◽  
Solid Organ ◽  
Health Educators ◽  
Organ Trafficking ◽  
Telephone Surveys ◽  
Attitudes And Practices ◽  
Group Interviews

Background Despite positive public attitudes toward solid organ donation in the United States, some of the lowest rates of donor designation persist among older adults and Latinx populations. Aims To identify barriers and facilitators to organ donation and donor designation among lay health educators ( promotoras) and mature Latina (50+ years). Methods An explanatory sequential mixed-method design was employed, with telephone surveys followed by focus group interviews, to assess and understand the nuances of organ donation and donor designation knowledge, attitudes, and practices among promotoras and mature Latinas in Chicago (IL), Philadelphia (PA), and San Antonio (TX). Descriptive statistics summarized quantitative survey data; thematic content analysis was performed on qualitative data. Results Twenty-nine promotoras and 45 mature Latina participated in both the surveys and focus groups ( N = 74). Most participants (90%) had limited knowledge of organ donation but reported being “somewhat” or “strongly” in favor of donation (70%); 40.5% were registered donors. Participants lacked knowledge about the registration process and its legal standing and upheld concerns that registered donors would be vulnerable to organ traffickers or targets for murder. Themes emerging from the group interviews revealed additional barriers to designation including distrust of the medical establishment, perceptions of inequities in organ allocation, and family resistance to discussing death. Discussion Low donor designation rates are primarily driven by concerns about organ trafficking and the fairness of the allocation system, particularly for undocumented immigrants. Conclusions The results informed development of a culturally targeted educational and communication skills intervention to increase donor designation in Latinx communities. Trial registration ClinicalTrials.gov NCT04007419.

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