Exploring the unmet needs and experiences of informal caregivers of patients with end-stage kidney disease (ESKD) receiving haemodialysis - a qualitative study.

BACKGROUND: Patients with end stage kidney disease (ESKD) receiving haemodialysis experience multiple symptoms, which can present physical and emotional challenges for both patients and their informal caregivers. Caregivers can experience anxiety, depression, and social isolation negatively impacting their overall wellbeing and resulting in caregiver burden. The needs of this group of caregivers have been largely neglected, with little emphasis placed on supportive interventions that might assist and support them in their caring role. AIM: The aim of this study Is to explore the unmet needs and experiences of caregivers of patients with ESKD receiving haemodialysis, and to determine the components of a supportive intervention. DESIGN: A qualitative study using semi-structured interviews (n = 24) with informal caregivers. An interpretive qualitative framework was employed to generate a rich understanding of the unmet needs and experiences of caregivers. Data was analysed using thematic analysis. Interviews were transcribed verbatim and data management was assisted through NVIVO version 11. SETTING/PARTICIPANTS: Twenty-four informal caregivers were purposively recruited from two haemodialysis settings within Northern Ireland. RESULTS: Three themes were identified: (1) The negative impact of distress, anxiety, and isolation on caregivers due to their caregiving responsibilities (2) Inadequate information and knowledge about the complexities of renal care (3) The benefits of spiritual beliefs, stress management and peer support in relieving the caregiving burden. CONCLUSIONS: Caregivers of patients with ESKD receiving haemodialysis are at increased risk of physical and psychological distress and burden arising from their caregiving role. The unpredictable nature of ESKD and haemodialysis treatment negatively impacts the caregiver experience and adds to the challenges of the role. The information needs of caregivers are not always adequately met and they subsequently lack appropriate knowledge, skills, and guidance to assist them in their caregiving role. Supportive interventions are essential for caregivers to enhance their capability to deliver effective care and improve their quality of life.

Nursing's Response to the Executive Order to Advance American Kidney Health.

The state of American kidney health is currently under the microscope. In the United States, approximately 20,000 persons advance to end-stage renal disease annually. Trends indicate accelerating increases in cost of care and a high mortality rate among patients with end-stage renal disease, with only 57% of patients surviving after 3 years. An executive order by the White House has placed the transformation of kidney care at the forefront of the country's health care agenda. The order focuses on key issues including improving outcomes, reducing treatment-related expenditures and increasing kidney donations. Mobilization of health care resources directed toward policymaking, workforce growth and development, and research will be critical to effectively achieve this executive order. Nursing's response, as the health care profession with the most members, will be crucial to achieving response implementation and success of the order. This article describes immediate and future actions including policy, leadership, clinical, educational, and research initiatives that the nursing profession should take to advance kidney health. It calls for specific actions by nursing and focuses on nursing organizations, nursing research, quality improvement initiatives, nursing innovation, advanced practice nursing, and the nephrology and transplant nursing workforce in order to improve kidney health nationally. The impact of the SARS-CoV-2 pandemic on kidney health and the implications for the profession of nursing are outlined. Although there are still many unknowns about the pandemic, nursing's voice is necessary to ensure the ongoing delivery of high-quality care.

[The "Nephrology outpatient Triage": an organizational model for the ambulatory care of patients with advanced renal disease].

The clinical course of outpatients with advanced chronic kidney disease requires a close monitoring by the nephrology team, in order to identify emerging clinical problems promptly and prevent subsequent complications. With the aim of improving the outpatient management in our clinic dedicated to advanced renal failure, we implemented the "Nephrology Clinic Triage" (NCT). This organizational model is coordinated by the nephrologist and supported by nurses. In case the outpatients, or their caregivers, have clinical problems or need advice, they can easily get in touch with a nephrology nurse by a dedicated telephone line. The nurse, who had been specifically trained for this purpose, interviews the patient by telephone and track his health conditions using dedicated flow-charts. The patients must be able to answer in a suitable way to the telephone interview on which NCT is based. Therefore, all patients referring to nephrology clinic are trained to record and report properly by telephone some relevant clinical parameters (i.e., blood pressure, body temperature, heart rate, body weight, urine volume) and clinical signs (dyspnea, dysuria, diarrhea, nausea, vomiting, abdominal/lumbar/chest pain). On the basis of the information obtained by means of NCT, the nurse can identify the patient's need and classify its severity and priority by means of a color-coding system. The subsequent medical intervention (telephone conversation, scheduled appointment, hospitalization) is planned accordingly. The implementation of NCT may be useful to monitor the clinical course of outpatients with advanced chronic renal failure also when they are home, thereby reducing the risk of harmful complications and hospitalization.

Ineffective Protection in Hemodialysis Patients: Sociodemographic and Clinical Context.

PURPOSE: To analyze the association between components of the nursing diagnosis ineffective protection (00043) and sociodemographic and clinical data of hemodialysis patients. METHOD: Cross-sectional study was conducted during the first half of 2015 with a sample of 200 patients from a reference clinic of nephrology. A structured instrument containing operational definitions was used to collect data. FINDINGS: Hemodialysis patients presented defining characteristics of ineffective protection (00043) associated with sociodemographic and clinical context variables. CONCLUSION: Components of this diagnosis may be influenced by sociodemographic and clinical context of hemodialysis patients.

Experiences and needs of older people with end stage renal disease: bereaved carers perspective.

BACKGROUND: There is a growing population of older patients with End Stage Renal Disease (ESRD) managed without dialysis in Thailand, and services have yet to be developed to specifically respond to the needs of this group. As a consequence this population are likely to have unmet needs with respect to health care and suffer from symptoms that could be better managed. OBJECTIVE: This qualitative study explored experiences and health care needs during the last year of life among older people with ESRD, managed without dialysis, from the perspective of bereaved carers. METHODS: A retrospective post-bereavement approach was adopted to collect qualitative interview data. Purposive sampling was used to select 12 bereaved relatives of older patients with ESRD, managed without dialysis, who had died in the previous 5-10 months. Semi-structured interviews were conducted. Data were digitally recorded, transcribed and analysed through framework analysis. RESULTS: Four main themes were identified: symptom experiences, impacts of being managed without dialysis, symptom management, and health care needs and utilisation of services. CONCLUSIONS: Findings confirmed patients' needs were not being met and identified the need to develop approaches to symptom management at home, health education, and psychological and spiritual support at the end of life.

Translation and adaptation to Portuguese of the haemodialysis patient assessment tool - CUDYR-DIAL. / Tradução e adaptação para o português do instrumento avaliação de paciente em hemodiálise - CUDYR-DIAL.

Objective To translate and culturally adapt the tool Categorización de usuario según dependencia y riesgo en unidades de hemodiálisis (CUDYR-DIAL) into Brazilian Portuguese. Method This is a methodological study for the translation and cultural adaptation or localization of the instrument CUDYR-DIAL. Results In the pre-test stage, three nurses applied the instrument to 78 patients of the haemodialysis unit of the São Lucas Hospital of the Pontifícia Universidade Católica do Rio Grande do Sul. The average scores of each item were compared and no statistically significant differences were found in the data of the three evaluators, which demonstrates that the score of each professional in each item converges to the same value. Considering the estimation of reliability, Cronbach's alpha determined for the 14 items of the scale presented a minimum of 0.796 and a maximum of 0.799. Conclusion The instrument was translated, but the cultural adaptation was not necessary. It presents good reliability and will contribute to qualify the care of haemodialysis patients.

Tradução e adaptação para o português do instrumento avaliação de paciente em hemodiálise - CUDYR-DIAL / Traducción y Adaptación para el Portugués del instrumento de evaluación de pacientes en hemodiálisis - CUDYR-DIAL / Translation and adaptation to Portuguese of the haemodialysis patient assessment tool - CUDYR-DIAL

RESUMO Objetivo Traduzir, adaptar culturalmente o instrumento Categorización de usuário según dependência y riesgo en unidades de hemodiálisis (CUDYR-DIAL), para a língua portuguesa do Brasil. Método Estudo metodológico para tradução, adaptação cultural do instrumento CUDYR-DIAL. Na etapa de pré-teste, três enfermeiros, aplicaram o instrumento em 78 pacientes da Unidade de Hemodiálise do Hospital São Lucas da Pontifícia Universidade Católica do Rio Grande do Sul. A comparação das pontuações médias de cada item apontou ausência de diferenças estatísticas significativas nos dados dos três avaliadores, demonstrando que a pontuação de cada profissional em cada item converge para um mesmo valor. Considerando a estimativa de confiabilidade, O α-Cronbach determinado para os 14 itens da escala apresentou o mínimo de 0,796 e o máximo de 0,799. O instrumento foi traduzido, no entanto, não houve necessidade de adaptação cultural, apresenta boa confiabilidade e quando validado irá contribuir para qualificar o cuidado aos pacientes em hemodiálise.

RESUMEN Objetivo Traducir y culturalmente adaptar la herramienta de Categorización de usuario según dependencia y riesgo en unidades de hemodiálisis (CUDYR-DIAL) al portugués de Brasil. Método Se trata de un estudio metodológico para la traducción y adaptación cultural del instrumento CUDYR-DIAL. En la fase de pre teste, tres enfermeras aplicaron el instrumento en 78 pacientes de la Unidad de Hemodiálisis del Hospital São Lucas de la Pontificia Universidad Católica de Rio Grande do Sul. Se realizó la comparación de las puntuaciones medias de cada elemento, que mostró ausencia de diferencias estadísticamente significativas en los datos de los tres evaluadores que demuestran que la puntuación de cada profesional en cada elemento converge en el mismo valor. Teniendo en cuenta la estimación de fiabilidad encontrado que la α-Cronbach determinado para los 14 ítems de la escala tenía el mínimo y máximo 0,796-0,799. Conclusión El instrumento fue traducido y ninguna palabra tubo necesidad de adaptación cultural, tiene una buena fiabilidad y cuando validado contribuirá en gran medida para calificar el cuidado de los pacientes en hemodiálisis.

ABSTRACT Objective To translate and culturally adapt the tool Categorización de usuario según dependencia y riesgo en unidades de hemodiálisis (CUDYR-DIAL) into Brazilian Portuguese. Method This is a methodological study for the translation and cultural adaptation or localization of the instrument CUDYR-DIAL. Results In the pre-test stage, three nurses applied the instrument to 78 patients of the haemodialysis unit of the São Lucas Hospital of the Pontifícia Universidade Católica do Rio Grande do Sul. The average scores of each item were compared and no statistically significant differences were found in the data of the three evaluators, which demonstrates that the score of each professional in each item converges to the same value. Considering the estimation of reliability, Cronbach's alpha determined for the 14 items of the scale presented a minimum of 0.796 and a maximum of 0.799. Conclusion The instrument was translated, but the cultural adaptation was not necessary. It presents good reliability and will contribute to qualify the care of haemodialysis patients.

Nursing homes: The new frontier.

As the population continues to age, we will see a larger percentage of end-stage CKD patients in nursing homes, both skilled and long-term facilities. This is a fragile population and will take buy-in from all practitioners to care for them. Even with the dietitian to manage a complicated and detailed menu, the social worker to manage the transportation and multiple issues with equipment, the therapy staff to protect against loss of ADLs, the recreational therapist to protect against loss of cognitive function and the medical staff (APs, nursing, physicians), this population will continue to present both challenges and opportunities.

PAlliative Care in chronic Kidney diSease: the PACKS study--quality of life, decision making, costs and impact on carers in people managed without dialysis.

BACKGROUND: The number of patients with advanced chronic kidney disease opting for conservative management rather than dialysis is unknown but likely to be growing as increasingly frail patients with advanced renal disease present to renal services. Conservative kidney management includes ongoing medical input and support from a multidisciplinary team. There is limited evidence concerning patient and carer experience of this choice. This study will explore quality of life, symptoms, cognition, frailty, performance decision making, costs and impact on carers in people with advanced chronic kidney disease managed without dialysis and is funded by the National Institute of Health Research in the UK. METHODS: In this prospective, multicentre, longitudinal study, patients will be recruited in the UK, by renal research nurses, once they have made the decision not to embark on dialysis. Carers will be asked to 'opt-in' with consent from patients. The approach includes longitudinal quantitative surveys of quality of life, symptoms, decision making and costs for patients and quality of life and costs for carers, with questionnaires administered quarterly over 12 months. Additionally, the decision making process will be explored via qualitative interviews with renal physicians/clinical nurse specialists. DISCUSSION: The study is designed to capture patient and carer profiles when conservative kidney management is implemented, and understand trajectories of care-receiving and care-giving with the aim of optimising palliative care for this population. It will explore the interactions that lead to clinical care decisions and the impact of these decisions on informal carers with the intention of improving clinical outcomes for patients and the experiences of care givers.

Utilization of acute care among patients with ESRD discharged home from skilled nursing facilities.

BACKGROUND AND OBJECTIVES: Older adults with ESRD often receive care in skilled nursing facilities (SNFs) after an acute hospitalization; however, little is known about acute care use after SNF discharge to home. DESIGN, SETTING, PARTICIPANTS, & MEASUREMENTS: This study used Medicare claims for North and South Carolina to identify patients with ESRD who were discharged home from a SNF between January 1, 2010 and August 31, 2011. Nursing Home Compare data were used to ascertain SNF characteristics. The primary outcome was time from SNF discharge to first acute care use (hospitalization or emergency department visit) within 30 days. Cox proportional hazards models were used to identify patient and facility characteristics associated with the outcome. RESULTS: Among 1223 patients with ESRD discharged home from a SNF after an acute hospitalization, 531 (43%) had at least one rehospitalization or emergency department visit within 30 days. The median time to first acute care use was 37 days. Characteristics associated with a shorter time to acute care use were black race (hazard ratio [HR], 1.25; 95% confidence interval [95% CI], 1.04 to 1.51), dual Medicare-Medicaid coverage (HR, 1.24; 95% CI, 1.03 to 1.50), higher Charlson comorbidity score (HR, 1.07; 95% CI, 1.01 to 1.12), number of hospitalizations during the 90 days before SNF admission (HR, 1.12; 95% CI, 1.03 to 1.22), and index hospital discharge diagnoses of cellulitis, abscess, and/or skin ulcer (HR, 2.59; 95% CI, 1.36 to 4.45). Home health use after SNF discharge was associated with a lower rate of acute care use (HR, 0.72; 95% CI, 0.59 to 0.87). There were no statistically significant associations between SNF characteristics and time to first acute care use. CONCLUSIONS: Almost one in every two older adults with ESRD discharged home after a post-acute SNF stay used acute care services within 30 days of discharge. Strategies to reduce acute care utilization in these patients are needed.

Prediction of care burden of patients undergoing haemodialysis: development of a measuring tool.

BACKGROUND: The ageing of the population and new options for therapy have led to an increase in the number of patients undergoing dialysis. Rising costs in health care and new financial structures impose funding constraints on dialysis departments and force the departments to deploy nurses more efficiently. Therefore, predicting the nursing time spent on the care of patients is important. OBJECTIVE: Development of a classification tool to predict the burden of nursing care of patients undergoing dialysis. DESIGN: Observational study. PARTICIPANTS: 242 patients on dialysis in 12 centres. MEASUREMENTS: The time spent on nursing care within predefined areas, including patient independence, vascular access, psychosocial support, dialysis complexity, communication and specific nursing actions, was measured by observers. Average times and their standard deviations (SD) were calculated. Variation of patient characteristics was analysed. RESULTS: The average care time required for the four routine investigated domains, namely independence, vascular access, psychosocial support and dialysis complexity, was 59.23 (SD = 24.30) minutes per treatment per patient. CONCLUSION: Our study shows that it is possible to predict the burden of nursing care of patients undergoing dialysis by means of a classification model.

Dialysis services for tourists to the Veneto Region: a qualitative study.

BACKGROUND: The European Union has an established mechanism which enables patients with end-stage kidney disease (ESKD) to receive dialysis abroad, allowing them to benefit from the legal right to freedom of movement. The number of patients seeking dialysis abroad has increased in recent years and the Veneto Region of Italy, a major tourist destination, has made significant investment in providing tourist haemodialysis services. AIMS: To understand the issues involved in providing dialysis services for tourists moving within the European Union, such as the experience of patients using the service, the challenges faced by professionals and patients and continuity of care. DESIGN: Semi-structured interviews. PARTICIPANTS: Interviews were conducted with patients, health professionals and key stakeholders in two dialysis centres set up for tourists in the Veneto Region's Local Health Authority 10. RESULTS: The study uncovered high levels of patient satisfaction and a positive impact on patients' quality of life. However, the service faces a number of challenges relating to accessibility, language barriers and continuity of care for the patient when leaving Veneto. The study also demonstrates the importance of coordinating care prior to the tourists' stay. CONCLUSIONS: Tourist dialysis centres are necessary to make the right to freedom of movement for patients with ESKD a reality. The findings suggest that communicating and coordinating high-quality care across borders in the EU may be facilitated by increased standardisation of norms and documents for continuity of care, such as care plans and discharge summaries.

Improving the quality of communication and service provision for renal patients of South Asian origin: the contribution of a cultural and health improvement officer.

A large number of patients with advanced chronic kidney disease in Bradford, UK are of South Asian origin. Effective delivery of care for these patients demands a consistently high standard of communication between patients, their families and renal unit staff. Communication may be problematic for a number of reasons, including language barriers and an incomplete appreciation of important cultural or religious beliefs. In 2010, we received charitable funding for an Ethnic Liaison Support Worker, renamed Cultural and Health Improvement Officer (CHIO). The CHIO is able to engage with and support patients, relatives and other members of the multidisciplinary renal team. Core responsibilities include ensuring that patients and their families feel at ease whenever they are in communication with the renal services team in Bradford; contributing to formal discussion and explanation of important clinical issues in the patient's first language (typically Urdu or Punjabi), thereby encouraging patients to feel more involved in decisions about their care; listening to ad hoc patient queries and concerns and addressing these directly or indirectly through timely involvement of other members of the renal team; cultivating a greater awareness of and empathy towards the holistic needs of patients and their families within the renal MDT; and strengthening the links between renal and social care services. The involvement of the CHIO is especially important when discussing sensitive and complex issues such as conservative and end-of-life care with patients and their families, as communication needs to be detailed, precise and unequivocal. This is crucial to providing a bespoke supportive service for our all patients, especially those who have opted for conservative management. The significant contribution of the CHIO to the quality of renal services in Bradford has been recognised and a permanent CHIO post has now been established.

Exploring the evidence for end-of-life care in patients with chronic kidney disease.

Much of the evidence supporting a focus on end-of-life care for persons with kidney disease is in the form of expert opinion and professional practice guidelines based on multi-disciplinary input and an exploration of the known illness trajectory for renal disease. Limited intervention studies or randomized control trials related to palliative or hospice care for patients in the U.S. with ESRD remain, providing rich opportunities for nephrology researchers. Nephrology nurses should remain vigilant and open to opportunities to participate in research related to improving end-of-life care for persons with ESRD and should be at the forefront of designing evidence-based practice projects for end-of-life care options for this population.

An error taxonomy system for analysis of haemodialysis incidents.

OBJECTIVES: This paper describes the development of a haemodialysis error taxonomy system for analysing incidents and predicting the safety status of a dialysis organisation. METHODS: The error taxonomy system was developed by adapting an error taxonomy system which assumed no specific specialty to haemodialysis situations. Its application was conducted with 1,909 incident reports collected from two dialysis facilities in Japan. RESULTS: Over 70% of haemodialysis incidents were reported as problems or complications related to dialyser, circuit, medication and setting of dialysis condition. Approximately 70% of errors took place immediately before and after the four hours of haemodialysis therapy. Error types most frequently made in the dialysis unit were omission and qualitative errors. Failures or complications classified to staff human factors, communication, task and organisational factors were found in most dialysis incidents. Device/equipment/materials, medicine and clinical documents were most likely to be involved in errors. Haemodialysis nurses were involved in more incidents related to medicine and documents, whereas dialysis technologists made more errors with device/equipment/materials. CONCLUSIONS: This error taxonomy system is able to investigate incidents and adverse events occurring in the dialysis setting but is also able to estimate safety-related status of an organisation, such as reporting culture.

Implementation of a foot assessment program in a regional satellite hemodialysis setting.

Individuals with chronic kidney disease are at higher risk for foot problems (i.e., ulcers, deformities, amputations) than the general population. Research demonstrates that assessment and active monitoring, teaching, and timely interventions can reduce the number and severity of lower limb amputations in the hemodialysis population. This paper reports on a quality improvement project aimed at implementation of a foot assessment program in a regional satellite hemodialysis setting based on the Registered Nurses' Association of Ontario's (2005) best practice guideline (BPG), The Assessment and Management of Foot Ulcers for People with Diabetes. Elements of the program include a one-time full assessment of risk for all patients transferring to the satellite program followed by monthly foot checks for those deemed high risk (i.e., people with diabetes). Evaluation of the program has been positive from both patients and hemodialysis nursing staff. There has been a greater emphasis on self-management around the care and management of patients and their high-risk feet. At the same time, the program has resulted in prompt identification of problems and timelier referral to the appropriate services in the patient's local community.