Understanding regional variation in early transplant access informs tailored interventions. Two comparable surveys assessed perceived access barriers among dialysis and transplant center staff across New England, New York, U.S. Southeast, and Ohio River Valley (August 2021-October 2023). Among 630 dialysis and 34 transplant staff/centers, dialysis staff most often cited patient disinterest (48.75%), transportation challenges (44.75%), and lack of support (37.87%). Transplant staff cited lack of support (74.35%), non-adherence (52.36%), and disinterest (49.03%). Dialysis staff ranked disinterest highest in New York and Ohio River Valley, and transportation challenges highest in the Southeast and New England. Transplant staff ranked anxiety/fear about the transplant process highest in New York, and lack of support highest elsewhere. Regionally tailored strategies are needed to improve access.
This study describes how U.S. dialysis patients with obesity experience trauma and manage it and co-occurring chronic diseases. We interviewed 40 adult hemodialysis patients and 20 physicians and dietitians. Transcripts were inductively coded using trauma theory. Patients described trauma that impacted their ability to manage co-morbidities. Providers characterized patient trauma and their own vicarious trauma while working in dialysis care. Nearly all patients reported trauma, most with characteristics of chronic, emotional, and/or medical trauma, and many described trauma from systems and vicarious trauma across relationships. Complex intersecting trauma exacerbates chronic disease burdens and may impact treatment effectiveness, successful management of co-morbidities, and patients' relationships. Results demonstrate the need for trauma interventions within chronic disease treatment and community settings.
Little is known about the attitudes of renal healthcare professionals (HCPs) toward deceased donation. We surveyed 222 renal HCPs from 12 dialysis units in southeast Michigan about their attitudes toward organ donation as part of a cluster-randomized, intervention study. Factor analysis identified three subscales: general benefits (alpha .88), general barriers (alpha .80), and staff dialysis barriers (alpha .79). We compared subscale values with two variables: enrollment status in the state donor registry (DR) and intentions for future DR enrollment. Higher scores on all three scales were positively associated with DR enrollment. Mean scores varied by HCP role within the dialysis unit. Tailoring donation education to a role and focusing on the benefits may have an effective impact on HCP attitudes. Results from this study can inform future interventions to improve promotion of organ donation amongst professionals working in dialysis units.
In the healthcare field, there has been increased recognition of the long-term consequences that adverse childhood experiences (ACEs) have on the health and well-being of people. It is imperative that a trauma-informed care (TIC) approach is utilized in the treatment of patients with end-stage kidney disease (ESKD) because of high rates of non-adherence and health risk behaviors. The purpose of this article is to explore current nephrology practices and TIC approaches utilized in the healthcare field. A TIC approach, through a health-belief model lens specific to the ESKD population, can be introduced by providers to better assess and treat patients. Implications for practice include standardization of TIC in social work practice, better outcomes for patients, and ongoing research considerations.
In The Organ Shortage Crisis in America: Incentives, Civic Duty, and Closing the Gap (2018), Andrew Michael Flescher analyzes and critiques proposed ways to solve the kidney shortage in the United States. He advocates removing disincentives to living donation and emphasizes types of nonmonetary compensation, eventually establishing “a gift exchange powered by civic engagement,” (p. 16) where the relational aspect of the exchange between donor and recipient is of primary importance. Unfortunately, the project fails. A reliance and emphasis on civic duty as the primary driver of living organ donation is unrealistic and potentially harmful. Without making structural changes to the current recruitment and distribution system to account for institutional biases within the healthcare system, there is no hope for a just solution to the organ shortage crisis. Relying on “civic virtue” requires a trustworthy healthcare system that uses a fair method to distribute organs. Empirical evidence demonstrates that we do not have either of those in the U.S. Policymakers could construe arguments that frame civic virtue as the most important missing ingredient in solving the organ shortage crisis as arguments that justify the current prejudicial framework. The U.S. should remove disincentives that deter donations, but that will be only a partial solution. Alternatives that can move the U.S. closer to an ethical solution include increasing access to primary and preventive care, to reduce the need for donor kidneys in the first place, and expanding the eligible donor pool.
IntroductionPREPARE NOW is a 5-year patient-centered outcomes research study testing a health system intervention to change kidney disease care.Patients received kidney care transitions services including nurse case management, classes, & referrals to peer mentors, behavioral health and dietitians.We conducted a study to examine the patient impact of the interventions.40 patients were randomly selected for phone interviews.Patient & family Co-Investigators collaborated to design the interview guide.Transcripts were analyzed using MaxQDA software.First-cycle coding was performed using provisional codes derived from interview prompts.Second-cycle axial coding was then performed to differentiate and organize codes used to identify the most salient themes.The PREPARE NOW interventions helped patients make shared decisions about their ESKD treatment choice, empowered patients, helped patients accept their kidney disease and provided emotional support to patients.Patients appreciated both in-person and virtual classes.Patients who chose not to do intervention components (peer mentor, dietitian, behavioral health) did so because they did not feel they needed that help or were too busy with other medical appointments.Overall, most patients were highly satisfied with the PREPARE NOW project and thought that both the nurse case management and classes on ESKD treatment choices and living with kidney disease were very valuable.Although infrequently used by patients, referrals for peer mentors, dietitians and behavioral health were valued by those who used these services. 2.
A chronic illness, such as kidney disease, has a significant effect on an individual’s perception of their quality of life (QOL). Health-related quality of life (HRQOL) is the subjective perception of an illness and treatment on the physical, psychological, and social well-being of that individual. In this study, we reviewed HRQOL in the Hmong-American (n = 22) and Non- Hmong-American (n = 40) patients receiving dialysis treatments at Mayo Clinic Health System Northwest Wisconsin (MCHS NWWI) utilizing the Kidney Disease Quality of Life-36 (KDQOL-36TM) survey. Our findings indicate a discrepancy between Hmong-American and Non-Hmong-American patients in the Burden of Kidney Disease subscale score of this survey. Language barriers, traditional belief systems versus Western medical practices, lack of understanding regarding illnesses, and a cultural focus on the family as a whole instead of individuality may have a significant bearing on the differences found between Hmong- American and Non-Hmong-American patients.
The purpose of this research was to increase the availability of mentor training materials for people with kidney disease, learning disabilities, and vision difficulties through the creation of an audiobook and a large font textbook to improve their participation in the training process. A qualitative approach was utilized to evaluate the participants’ training experience. A secondary goal of this project was to assess the mentee’s quality of life (QOL) prior to being matched with a mentor and then 3–6 months after the match. During our yearlong study, 11 participants completed the peer mentor training classes and 5 mentees were matched with the mentors. Mentee QOL was measured by the CDC’s Healthy Days Measure before participating in the peer mentoring program and reflected variable QOL for mentee participants. Findings indicate that participants utilized the audiobook and felt it aided their training experience.
Nephrology social workers are trained to assess and address the ecosystemic splits in nephrology care that threaten the resilience of dialysis patients and their families. Given this training and skills, nephrology social workers are ideally positioned to help center the patient and their decision partner in modality decisions that are increasingly influenced by provider incentives to promote home dialysis and transplant utilization. The Family Resilience Framework provides a paradigm for social work assessment and intervention during the iterative process of dyadic dialysis decision-making to develop an individualized care plan that promotes resilience through attunement to dyadic processes.
There has been limited research about how people who have received organ transplants from deceased donors cope with their donors’ deaths. A study was conducted with 77 anonymous recipients to determine how their coping methods may differ qualitatively or quantitatively. Results indicate that females and males use a variety of methods, with several differences noted in their levels of importance, frequency of use, and impact. Some differences, based on age, were also noted. Four overarching themes were identified in the coping process, including: resolving whether the donor “died for” the individual, the random chance nature of receiving an organ acting as an emotional defense, thanks/faith in God being beneficial, and gratitude toward the donor and their family.
Patient-centered outcomes research (PCOR) requires that patients and care partners be active partners throughout the entire research process. Although PCOR methodologies in health research have increased, PCOR on chronic kidney disease (CKD) remains relatively low. This project aimed to better understand the state of PCOR on CKD from the perspectives of patients, care partners, and researchers. Two National Kidney Foundation (NKF) surveys were completed by 847 CKD patients and care partners and 647 CKD researchers. Results indicate that a small minority (7%) of patient and care partner respondents were involved with kidney disease research, and less than a third (27%) of responding researchers indicated that they had involved patients and care partners in their research projects within the last five years. Despite relatively low numbers of PCOR projects on CKD, patients and care partner respondents are eager to participate in research and, likewise, CKD researchers are interested in doing PCOR. Implications include increasing PCOR on CKD and utilizing nephrology social workers to facilitate connections among CKD patients, care partners, and researchers.
Older adults have increased risk factors for chronic kidney disease (CKD), diabetes, and blindness. Frequent routine screening may help with early detection, management, and prevention of eye disease and blindness. Using data from the National Health Interview Survey (NHIS), this study examined the use of eye health service among a national sample of older insured adults with self-reported diabetes and chronic kidney disease diagnoses. This study demonstrates an important correlation in the use of eye healthcare based on diabetes status, kidney disease status, and length of a diabetes diagnosis. Given the importance of early detection of potential eye disease, encouraging people and their families to seek early and frequent eye examinations is suggested.
The following paper will explore autonomy in the context of impoverished kidney vendors. I argue that people who live in impoverished countries lack the ability to provide true and informed consent to sell their organs. The focus will be on kidney vendors in Pakistan. I am writing from a social work lens and consider the oppression, exploitation, and injustices that these vendors have faced. Relational autonomy acknowledges that our relationships and environment influence our ability to be autonomous. Therefore, the impoverished vendors’ autonomy in Pakistan is threatened in the context of selling their organs. Lastly, this paper will acknowledge the counterargument that selling one’s kidney should be an option for anyone, regardless of socioeconomic status, and acknowledge the value that a sold organ can bring both the vendor and the recipient.
Persons with end-stage kidney disease (ESKD) are at increased risk for multiple health complications, including increased hospitalizations and shortened life expectancy. These health risks elevate the urgency to complete an advance directive (AD), allowing patients to express their wishes if they are unable to because of limited capacity. Dialysis social workers are well-positioned to skillfully lead these conversations and respond to emotional distress, family conflict and pain, and symptom burden that many persons with ESKD experience. This paper outlines a framework for dialysis social workers to assess the wishes of patients in the event of worsening health and offers suggestions for interventions when patients and family members experience distress related to serious illness and advance care planning (ACP).
Objectives:The current qualitative inquiry solicited hemodialysis (HD) patients to identify events or incidences that have gone well in their day-to-day life, things they consider to be blessings, and to further reflect on the contributors of such events.Methods:Hemodialysis patients kept an electronic journal using investigator-purchased tablet computers.Results:Multiple themes emerged for which HD patients expressed gratitude: 1) life itself, 2) positive or improving health 3) family interactions and social support, 4) clinic resources, favorable treatment therapy, and staff, and 5) other small events.Conclusions:Clinicians are urged to explore the psychological assets that HD patients possess with a focus on how these might be further cultivated and whether their amplification leads to improved quality of life.
Blacks or African Americans are almost four times more likely to develop end-stage kidney disease (ESKD) than Whites (United States Renal Data System (USRDS), 2019). Black or African-American ESKD patients are also less likely to manage their medications successfully compared to White ESKD patients (Browne & Merighi, 2010; Curtin, Svarstad, Keller, 1999). Few studies, however, investigate broad social issues, such as structural racism, as a fundamental cause of the inequity. Furthermore, theinteraction of structural racism and societal power dynamics in the form of social and cultural capital and their effect on medication adherence inequity has not been explored. This article examines this interaction and its link to medication adherence inequity in the Black or African-American ESKD population and posits a new theoretical framework.
