Educating CARegivers of KIdney patientS Erasmus Project

Project Title

Educating CARegivers of KIdney patientS

Project Key Action

This project related with these key action: Cooperation for innovation and the exchange of good practices

Project Action Type

This project related with this action type : Strategic Partnerships for adult education

Project Call Year

This project’s Call Year is 2019

Project Topics

This project is related with these Project Topics: Health and wellbeing; Inclusion – equity; Disabilities – special needs

Project Summary

The majority of patients with Chronic Kidney Disease (CKD) and patients with kidneys insufficiency rely on their family members for their daily activities and medical care, since the family is the best source for providing care to these patients. Studies have shown that good family support has a positive effect on successful patients’ adaptation to dialysis treatment and compliance with a dietary regimen. However, sometimes patients do not follow the dialysis treatment’ restrictions due to their perception that they have become a ‘burden’ to their family. Thus, family caregivers play an important role in the provision of effective communication to dialysis patients when it is appropriate. However, caregiving is regarded as a chronic stressor due to the demanding activities and the emotional burden of caring.

A large proportion of family members take full responsibility for making decisions about the Renal Replacement Method (RRT=hemodialysis, peritoneal dialysis or transplantation) the patients will follow, taking into consideration the opportunity to maintain their lifestyle and the possible risk of the therapy. They also take into account their priorities and their capability to manage home hemodialysis. However, sometimes family caregivers have to take difficult decisions, such as interruption of dialysis therapy or referring their patients to hospice services .Frequent hospitalizations of the patients and factors associated with the disease can lead to the deterioration of depression and reduction of caregiver’s quality of life. Identifying family, professionals or individuals ‘caregiver burden’ early will optimize the well-being of the caregiver. Therefore, the evaluation of caregiver’s status and determination of their needs are very important.

The ECARIS (Educating Carers of Kidney Patients) project will focus on the needs and the problems addressed by informal carers and professionals who work with carers of patients with ESRD (End Stage Renal Disease) from Greece, Spain, Denmark, and Italy. It will attempt to provide education, support, and encouragement for caregivers of patients with ESRD. End-stage renal disease (ESRD) is the last stage (stage five) of chronic kidney disease (CKD). This means kidneys are only functioning at 10 to 15 percent of their normal capacity. When Chronic Kidney Disease develops into ESRD, dialysis, peritoneal dialysis or a kidney transplant is necessary for the patient so to stay alive. Chronic Kidney Disease (CKD) is an aggravated condition in renal function in which the body will gradually lose its ability to maintain electrolyte and metabolic balance leading to increased blood urea and its retention in the body. Dialysis and Peritoneal dialysis are methods of removing unnecessary fluids and wastes when the kidneys are unable to perform their task due to impairment. A kidney transplant is the transfer of a healthy kidney from one person into the body of a person who has little or no kidney function.

The ECARIS (Educating Carers of Kidney Patients) project aims at exploring ways of supporting caregivers that can have beneficial effects on the outcomes for both the patient and the caregiver. Discussing coping skills can improve the caregiver quality of life even in the difficult environment of end-of-life care. Psychosocial intervention can have significant, positive effects on caregivers’ burden and improve their satisfaction with their role.
The benefits of informing/learning/teaching caregivers are numerous and include issues such as illness education, medication concordance improvements, explanation of prognostic expectations, and various other psychosocial and practical inputs.
Although it involves a lot of work, the payoff more than rewards the effort. Carers become virtual members of the multidisciplinary team, and their contribution to care plans is valued and respected. Relapses are spotted earlier and admissions become less frequent as carers become more adept at managing problems and knowing whom, where, and when to call for assistance.

The involvement of kidney patients’ associations, dialysis units and hospitals’ nephrology departments, caregivers’ associations and healthcare professionals will contribute to exchanging and recording caregivers’ experiences/concerns/fears and highlighting the problems caregivers face at these countries. The project with all these participants is going to boost the awareness and improve the skills of caregivers in social and health field. The participating organizations’ goal is this project to become the first successful hotbed of further connections across Europe.

EU Grant (Eur)

Funding of the project from EU: 175340 Eur

Project Coordinator

SARONIC NEPRHOLOGICAL CENTER Ltd & Country: EL

Project Partners

• Greek Carers Network EPIONI
• Komiteen for Sundhedsoplysning
• ANZIANI E NON SOLO SOCIETA COOPERATIVA SOCIALE
• Federación Nacional de Asociaciones ALCER