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      El hogar recinto para sostener la vida sujeta a diálisis peritoneal: experiencia de cuidadores familiares Translated title: The home as a life-sustaining enclosure for peritoneal dialysis: experience of family caregivers

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          Abstract

          RESUMEN Introducción: Cuidar en el hogar a una persona con tratamiento de diálisis peritoneal implica esfuerzo, aprendizaje, lograr habilidades, controlar el entorno, así como ser rigurosos en la realización del procedimiento. Sin embargo, se necesita el seguimiento permanente de las enfermeras para evitar complicaciones y lograr la participación familiar para que el cuidador no se agote. Objetivo: Analizar las experiencias de los cuidadores familiares de pacientes sujetos a diálisis peritoneal en el hogar. Material y Método: Investigación cualitativa, descriptiva en la cual participaron 12 cuidadores familiares de adultos jóvenes con tratamiento de diálisis peritoneal, muestra obtenida por criterios de saturación, redundancia y por conveniencia. Para la recogida de datos se utilizó la entrevista semiestructurada validada por juicio de expertos y aprobada por Comité de Ética. Los datos recogidos fueron procesados por análisis de contenido temático de forma artesanal. Resultados: a) Capacitación, adquisición de habilidades y satisfacción, b) Cuidados para la diálisis peritoneal: ambiente, materiales, bioseguridad y complicaciones, c) Beneplácitos y disconformidades en la permanencia del apoyo familiar. Conclusiones: Los cuidadores familiares valoran de forma positiva la capacitación recibida por las enfermeras, adecuan la habitación del paciente y utilizan algunos materiales propios del hogar y conforme pasa el tiempo logran habilidades para realizar la diálisis peritoneal. Mantienen el orden, la limpieza, las medidas de bioseguridad y siguen el procedimiento para evitar complicaciones. Algunos cuidadores reconocen el apoyo de la familia ya sea emocional, espiritual, económico o con las tareas del hogar.

          Translated abstract

          ABSTRACT Introduction: Caring at home for a person on peritoneal dialysis treatment involves effort, learning, achieving skills, controlling the environment, as well as being rigorous in carrying out the procedure. However, ongoing monitoring by nurses is needed to avoid complications and to involve the family so that the caregiver does not become exhausted. Objective: To analyze the experiences of family caregivers of peritoneal dialysis patients at home. Material and Method: Qualitative descriptive research involving 12 family carers of young adults undergoing peritoneal dialysis treatment. The sample was obtained by saturation, redundancy and convenience criteria. The semi-structured interview was used for data collection, validated by expert judgement and approved by the Ethics Committee. The data collected were processed by thematic content analysis. Results: a) Training, skills acquisition and satisfaction, b) Peritoneal dialysis care: environment, materials, biosafety and complications, c) Satisfaction and dissatisfaction with continued family support. Conclusions: Family caregivers value positively the training received by the nurses, they adapt the patient’s room and use some household materials, and over time they acquire skills to perform peritoneal dialysis. They maintain order, cleanliness, biosecurity measures and follow the procedure to avoid complications. Some caregivers acknowledge the support of the family, whether emotional, spiritual, financial or with household tasks.

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          Peritoneal dialysis-related peritonitis: challenges and solutions

          Peritoneal dialysis is an effective treatment modality for patients with end-stage renal disease. The relative use of peritoneal dialysis versus hemodialysis varies widely by country. Data from a 2004 survey reports the percentage of patients with end-stage renal disease treated with peritoneal dialysis to be 5%–10% in economically developed regions like the US and Western Europe to as much as 75% in Mexico. This disparity is probably related to the availability and access to hemodialysis, or in some cases patient preference for peritoneal over hemodialysis. Peritoneal dialysis-related peritonitis remains the major complication and primary challenge to the long-term success of peritoneal dialysis. Fifty years ago, with the advent of the Tenckhoff catheter, patients averaged six episodes of peritonitis per year on peritoneal dialysis. In 2016, the International Society for Peritoneal Dialysis proposed a benchmark of 0.5 episodes of peritonitis per year or one episode every 2 years. Despite the marked reduction in peritonitis over time, peritonitis for the individual patient is problematic. The mortality for an episode of peritonitis is 5% and is a cofactor for mortality in another 16% of affected patients. Prevention of peritonitis and prompt and appropriate management of peritonitis is essential for the long-term success of peritoneal dialysis in all patients. In this review, challenges and solutions are addressed regarding the pathogenesis, clinical features, diagnosis, treatment, and prevention of peritoneal dialysis-related peritonitis from the viewpoint of an infectious disease physician.
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            Evaluating Burden and Quality of Life among Caregivers of Patients Receiving Peritoneal Dialysis.

            Peritoneal dialysis (PD) is advocated as treatment of choice for most end-stage renal disease (ESRD) patients, including elderly and frail patients. It typically requires caregiver involvement to support care at home. The purpose of this study was to examine changes in burden and quality of life (QOL) in caregivers of prevalent PD patients over 12 months. Data were collected in 44 caregivers of PD patients (mean age 38.4 ± 6.3 years; 60% female) in Singapore at baseline and 12 months. Measures included demographics, the Lay Care-Giving for Adults Receiving Dialysis (LC-GAD), Zarit Burden Interview (ZBI), and the World Health Organization Quality of Life instrument (WHOQOL-BREF). Paired t-tests indicate a significant decrease in task-related aspects of caregiving (p = 0.04), particularly in relation to personal hygiene (p < 0.01), over time. Cognitive aspects of caregiving remained unchanged. Perceived burden, however, significantly increased (p < 0.01), with significantly more caregivers reporting moderate to severe caregiver burden at follow-up (28%) relative to baseline (13%; p < 0.01). There was a significant reduction in psychological health (under WHOQOL) (p = 0.01). Study findings indicate an increase in caregiver burden and a reduction in psychological health despite a reduction in task-related aspects of caregiving, supporting a further exploration of the "wear-and-tear" hypothesis among this population. Intervention strategies are needed.
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              Telenephrology with Remote Peritoneal Dialysis Monitoring during Coronavirus Disease 19

              Across the globe, healthcare providers today have abandoned standard procedures in order to address the immediate needs of the coronavirus disease 19 (COVID-19) pandemic, which is spreading at an alarming rate. In spite of many challenges [1], the response of the nephrology specialty to COVID-19 has been proactive, prompt, and widespread. COVID-19 is highly contagious with the potential to affect a large number of individuals especially those with comorbid conditions. Prior experience has demonstrated that the 2003 severe acute respiratory syndrome-COV epidemic and the 2012 MERS-COV outbreak had high mortality rates − approximating 75–92% − in patients developing AKI [2, 3]. In COVID-19 cases, preexisting chronic kidney disease or dialysis dependence is a risk factor for poor prognosis. In a cohort of 21 patients admitted to the intensive care unit, 47.6% had a preadmission comorbidity of chronic kidney disease and 9.5% had preexisting dialysis dependence [4]. Thus, it is critical to protect this vulnerable population and a majority of these people need to congregate 3 times a week for going through life-saving procedures. Across the world, in-center hemodialysis (HD) units have scrambled to reduce potential risks in the spreading of the infection to patients by creating new and working extra shifts, reducing the number of HD patients dialyzing at the same time, allowing at least 6 feet of space between HD chairs/stations, and even decreasing the duration of patients' sessions. Despite these efforts, some patients in New York City are so fearful of contracting COVID-19 and not showing up for in-center HD, because of which there is an increase in the number of emergency room visits and hospital admissions for fluid overload and electrolyte disturbances. The same scenario is seen in other HD centers across the United States. While home dialysis is the ideal option for social distancing during a pandemic, resource constraints lead to the formation of barriers in converting in-center HD patients to home HD or peritoneal dialysis (PD). For patients currently on PD, telemedicine and advances in remote PD monitoring have been paramount in managing PD patients remotely. Broadening Access to Telehealth In March 2020, the Centers for Medicare and Medicaid Services broadened their access to Medicare telehealth services following President Trump's emergency Declaration. This new waiver (1,135) allows Medicare to pay for office, hospital, and other visits furnished via telehealth. This is encouraging in the context of reimbursements, and therefore, the use of telehealth has increased exponentially, and many centers are working through logistical challenges. In California's COVID-19 epicenter, some Silicon Valley hospitals place emphasis on data privacy, maintaining strict policies with strong preference for providers and patients to use hospital-approved technology. On the other hand, Mount Sinai Hospital in New York City has taken a more patient-centric approach where nephrologists are using all available technologies that the patient may be comfortable using including FaceTime, Zoom, or WhatsApp. Since March 15, 2020, the Mount Sinai staff rescheduled all routine monthly PD visits to virtual visits using whichever technology each patient preferred. With limited staff in the clinic, the PD nurse inspects the exit site remotely, the nephrologist virtually “sees” the patient, and PD logs are reviewed. Remote Monitoring of Treatments Performing monthly telehealth visits would not be possible for this patient population without the ability to remotely monitor their treatments to assess the quality of the home therapy delivered and troubleshoot any issues that may arise. Sharesouce, a cloud-based connectivity platform that shares information from the patients' dialysis cycler and enables nephrologists and clinical staff to remotely monitor each cycle's information (fill volume and time, dwell time, drain volume and time, and ultrafiltration volume) provides a solution to this problem. The PD unit at Mount Sinai has approximately 80 patients and over 80% of patients utilize Sharesource. It has been an invaluable resource to get patient's information directly from home and has been a pivotal cog in facilitating the implementation of telehealth. To date, over 90% of Mount Sinai's home dialysis patients have had their monthly visits conducted through telehealth without having to come to the unit for any of their needs. The same holds true in Chicago, Illinois, a growing epicenter, where the Medical District Home Dialysis staff are calling PD patients 2–3 times per week. Sharesource has become key for handling this crisis, allowing them to track treatment and compliance. Patients skipping treatments or who are not the most compliant are identified and educated about the importance of their treatments. The risk of this behavior, which could bring them up to the emergency room, where there is a high risk of ­COVID-19 exposure, is also discussed. In less urban areas not currently affected as much by COVID-19, such as at Baylor Scott and White Healthcare in Temple, Texas, nephrologists are bracing for an onslaught and have preemptively started using telemedicine for the monthly visits with their home dialysis patients while utilizing the benefits of Sharesource to remotely monitor, adjust, and troubleshoot their patients' dialysis treatments. One hundred percent of their patients' data is on the Sharesource platform, and to date, over 80% of their patients have had telehealth encounters. Patients have been more than willing to adopt this technology and are appreciative of avoiding unnecessary exposure, further assisting their providers' efforts to flatten the curve. In other parts of the world, Italy and Spain, are weeks ahead of the United States in the pandemic wave. In Vicenza Italy, one of the largest PD centers in Europe, remote patient management has been utilized now in 100% of the 132 patients. All patients receive virtual visits and communicate from home with the center. Fill volume and time, dwell time, and general PD prescription are modified based on the collected data such as drain volume and time, and overall ultrafiltration volume per session. By implementing a complete telemonitoring of patients also using tablets and other communication devices, in the middle of the epidemic peak, only 1 patient resulted positive to COVID-19 due to a contact with his previously infected daughter. A special protocol for remote management of peritonitis was also implemented with home delivery of antibiotics. One patient had to have the catheter removed for omentum trapping and no other complications were observed in the time span of the epidemic. While the world is adapting to telehealth and managing patients remotely, Renal Therapy Services (RTS), an independent entity owned by Baxter International, Inc., oversees 77 renal care centers with 4,500 PD patients worldwide. Back in 2016, RTS Colombia implemented a Remote Patient Monitoring program for automated PD patients using Sharesource, starting with a standardized training with structured follow-up using Key Performance Indicators. Education and a well-structured plan were crucial for successful implementation. It has been demonstrated that the use of standardized remote patient monitoring program for the management of automated PD patients was associated with lower hospitalization rates and decreased hospital length of stay [5]. Having a well-established home dialysis program where 40% of the RTS dialysis population utilizing PD as their dialysis modality has allowed RTS Colombia dialysis facilities to adapt quickly during the pandemic. While most patients are unable to switch to home dialysis currently, experts expect the COVID-19 pandemic to act as a catalyst for a surge in this modality for the future. The utilization of telehealth rebukes the perception that care is substandard to in-center dialysis and also allays the fear of receiving care without medical oversight. Telenephrology fosters the patient-clinician relationship and allows for substantial medical oversight as clinicians can observe (via video) a patient's dialysis environment in their home, providing feedback and recommendations. When the curve starts to flatten, social distancing will still need to be maintained. The continued ability to provide clinical staff with detailed, real-time information about PD patients' treatments and prescriptions protects this vulnerable patient population and healthcare providers from unnecessary potential exposure to COVID-19. Disclosure Statement H.T. is an employee of Baxter International and owns stock in the company. In the last 3 years, C.R. has been consulting or part of advisory boards for ASAHI, Astute, Baxter, Biomerieux, B. Braun, Cytosorbents, ESTOR, FMC, GE, Jafron, Medtronic, and Toray. O.E.S., S.S., J.U., and M.N. have no conflicts of interest or disclosures. Funding Sources No funding was provided for this manuscript. Author Contributions Drs. Osama El Shamy, Ha Tran, Jaime Uribarri, Shuchita Sharma, Mohanram Narayanan and Claudio Ronco all contributed substantial contributions to the conception and design of the work and drafting the work or revising it critically for important intellectual content, as well as the final approval of the version to be published. Finally they all agree to be accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved.
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                Author and article information

                Journal
                enefro
                Enfermería Nefrológica
                Enferm Nefrol
                Sociedad Española de Enfermería Nefrológica (Madrid, Madrid, Spain )
                2254-2884
                2255-3517
                June 2022
                : 25
                : 2
                : 125-131
                Affiliations
                [5] Chiclayo orgnameUniversidad Católica Santo Toribio de Mogrovejo orgdiv1Hospital Almanzor Aguinaga Asenjo orgdiv2Servicio de hemodiálisis Peru
                [4] Chiclayo orgnameUniversidad Católica Santo Toribio de Mogrovejo orgdiv1Escuela de Enfermería Peru
                [1] Chiclayo orgnameCentro de salud Inkamay salud Perú
                [2] Chiclayo orgnameUniversidad Católica Santo Toribio de Mogrovejo orgdiv1Servicio de hemodiálisis del Hospital Almanzor Aguinaga Asenjo Peru
                [3] Chiclayo orgnameUniversidad Católica Santo Toribio de Mogrovejo Peru
                Article
                S2254-28842022000200125 S2254-2884(22)02500200125
                10.37551/52254-28842022013
                17a0624e-a691-4ee1-beed-97ce79d4a5eb

                This work is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License.

                History
                : 25 March 2021
                : 21 November 2021
                Page count
                Figures: 0, Tables: 0, Equations: 0, References: 22, Pages: 7
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                SciELO Spain

                Categories
                Originales

                chronic kidney disease,cuidador familiar,diálisis peritoneal,enfermedad renal crónica,vivienda,investigación cualitativa,family caregiver,peritoneal dialysis,housing,qualitative research

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