Perspectives on Kidney Disease Education and Recommendations for Improvement Among Latinx Patients Receiving Emergency-Only Hemodialysis

Novick, Tessa K.; Díaz, Santiago Andrés; Barrios, Feliciano; Cubas, Doris; Choudhary, Kavyaa D.; Nader, Paul; ElKhoury, Raymonda; Cervantes, Lilia; Jacobs, Elizabeth A.

doi:10.1001/jamanetworkopen.2021.24658

Cited by 10 publications

(8 citation statements)

References 34 publications

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“…The participants in our study received minimal predialysis kidney disease education and experienced discriminatory treatment while they relied on emergency dialysis, similar to prior studies. 15 Patients had to take the initiative to educate themselves; however, the symptom burden of emergency hemodialysis led to a high caregiving burden on family and an inability to work. 6,7 Combined with lack of appropriate education about transplant and insurance opportunities, this burden limited any ability to seek transplant information.…”

Section: Discussionmentioning

confidence: 99%

The Transplant Experience for Undocumented Immigrant Patients Formerly Receiving Emergency Dialysis and Caregivers

Rizzolo,

Rockey,

Camacho

et al. 2024

JAMA Netw Open

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ImportanceIndividuals of undocumented immigration status with kidney failure face barriers to receiving transplants due to lack of health insurance despite no regulatory barriers. Little is known about the perspectives on kidney transplant among individuals with undocumented immigration status with kidney failure who relied on emergency hemodialysis.ObjectiveTo examine the overall experiences of transplant among transplant recipients of undocumented immigration status who previously relied on emergency hemodialysis and their family caregivers.Design, Setting, and ParticipantsIn this qualitative study, semistructured 1-to-1 interviews were conducted with transplant recipients who had previously received emergency hemodialysis and transitioned to scheduled dialysis and their primary caregivers living in Denver, Colorado, between May 1, 2022, and March 31, 2023, in English or Spanish.Main Outcomes and MeasuresThemes and subthemes regarding the experience of transplant as an undocumented immigrant previously receiving emergency hemodialysis were identified. Interview transcripts were translated, deidentified, and then analyzed using thematic analysis.ResultsA total of 25 participants including 15 transplant recipients (5 [33.3%] female and 10 [66.7%] male; mean [SD] age, 49.5 [9.8] years) and 10 caregivers (7 [70.0%] female and 3 [30.0%] male; mean [SD] age, 44.5 [22.3] years) participated. Six themes were reported: limited kidney replacement therapy education while receiving emergency hemodialysis (lack of awareness of kidney disease and treatment options and discriminatory kidney replacement therapy education due to immigration status), hope for transplant once receiving scheduled dialysis (prospect of transplant through scheduled dialysis, family and quality of life as transplant motivators), transplant education and health insurance after transition to scheduled dialysis (inadequate transplant education in dialysis clinic, peer-to-peer transplant education, and peer-to-peer communication regarding availability of private health insurance), uncertainty during transplant evaluation (difficulty navigating the evaluation and wait-listing process, lack of communication regarding timeline, and concern for family limiting living donation), posttransplant improvements (ability to work after transplant is critically important given immigration status, autonomy with transplant improves mental health, and vigilance in maintaining transplant), and transplant facilitators (self-advocacy, spirituality and optimism, and peer support).Conclusions and RelevanceThis qualitative study of transplant recipients of undocumented immigration status and their caregivers found that individuals formerly receiving emergency dialysis are excluded from education and access to transplant, and peer support throughout the transplant process helped with education and motivation to pursue transplant. These findings may be used to implement improvements in access to support and education for patients of undocumented immigration status with kidney failure, especially in areas where scheduled dialysis is not available.

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Section: Discussionmentioning

confidence: 99%

The Transplant Experience for Undocumented Immigrant Patients Formerly Receiving Emergency Dialysis and Caregivers

Rizzolo,

Rockey,

Camacho

et al. 2024

JAMA Netw Open

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“…Lack of language and culture concordant care is a contributing factor in decreased transplant referral evaluation, waitlisting and receipt, and also likely affects adequate care which includes transplant and modality education [69]. Further, immigration status limits all kidney replacement therapy treatment directly due to exclusion under federal insurance coverage [70], but also indirectly through limited modality and transplant education [71]. Even with adequate insurance coverage, undocumented immigrants face structural barriers such as lack of transportation and disability benefits which may limit ability to get to appointments and take time off work for evaluation [72].…”

Section: System Level Factorsmentioning

confidence: 99%

Barriers to home dialysis and kidney transplantation for socially disadvantaged individuals

Rizzolo,

Shen

2023

Current Opinion in Nephrology &Amp; Hypertension

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Purpose of review People with kidney disease facing social disadvantage have multiple barriers to quality kidney care. The aim of this review is to summarize the patient, clinician, and system wide factors that impact access to quality kidney care and discuss potential solutions to improve outcomes for socially disadvantaged people with kidney disease. Recent findings Patient level factors such as poverty, insurance, and employment affect access to care, and low health literacy and kidney disease awareness can affect engagement with care. Clinician level factors include lack of early nephrology referral, limited education of clinicians in home dialysis and transplantation, and poor patient-physician communication. System-level factors such as lack of predialysis care and adequate health insurance can affect timely access to care. Neighborhood level socioeconomic factors, and lack of inclusion of these factors into public policy payment models, can affect ability to access care. Moreover, the effects of structural racism and discrimination nay negatively affect the kidney care experience for racially and ethnically minoritized individuals. Summary Patient, clinician, and system level factors affect access to and engagement in quality kidney care. Multilevel solutions are critical to achieving equitable care for all affected by kidney disease.

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“…An understanding of this insurance structure takes concerted efforts and provision of quality education. A profile of the uninsured shows lower educational attainment, poor health literacy, and poverty ( 1 , 45 ). These adverse social characteristics may be particularly profound among marginalized populations as depicted in Figure 1 ( 46 ).…”

Section: Structural Barriers To Accessing Kidney Servicesmentioning

confidence: 99%

Structural Inequities and Barriers to Accessing Kidney Healthcare Services in the United States: A Focus on Uninsured and Undocumented Children and Young Adults

Iorember

Bamgbola

2022

Front. Pediatr.

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The population of children living in poverty and lacking healthcare insurance has increased in the United States of America in the last decade. Several factors have been responsible for this trend including illegal immigration, socioeconomic deprivation, young age, racial segregation, environmental degradation, and discriminatory housing policies. These systemic barriers have contributed to the exclusion of families from essential healthcare services. They are also contributory to the development of chronic illnesses (such as dialysis-dependent kidney disease) that are debilitating and frequently require considerable therapeutic resources. This unfortunate scenario creates a never-ending vicious cycle of poverty and diseases in a segment of society. For pediatric nephrologists, the challenges of caring for uninsured children with chronic kidney disease are all too familiar. Federally funded healthcare programs do not cover this patient population, leaving them the option of seeking care in emergency healthcare settings. Presentation with a critical illness often necessitates urgent placement of vascular catheters and the choice of acute hemodialysis. Adverse social environment influences the need for protracted chronic hemodialysis and a delay in kidney transplantation. Consequently, there is greater comorbidity, recurrent hospitalization, and a higher mortality rate. New policies should address the deficit in health insurance coverage while promoting social programs that will remove structural barriers to health care resources for undocumented children and young adults.

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Perspectives on Kidney Disease Education and Recommendations for Improvement Among Latinx Patients Receiving Emergency-Only Hemodialysis

Cited by 10 publications

References 34 publications

The Transplant Experience for Undocumented Immigrant Patients Formerly Receiving Emergency Dialysis and Caregivers

The Transplant Experience for Undocumented Immigrant Patients Formerly Receiving Emergency Dialysis and Caregivers

Barriers to home dialysis and kidney transplantation for socially disadvantaged individuals

Structural Inequities and Barriers to Accessing Kidney Healthcare Services in the United States: A Focus on Uninsured and Undocumented Children and Young Adults

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