The majority of patients with Chronic Kidney Disease (CKD) and patients with kidneys insufficiency

are supported by their family members in daily activities and medical care. Studies report that good family support could have a positive effect on successful patients’ adaptation to dialysis treatment and compliance with a dietary regimen. However, sometimes patients do not follow the therapy Because they feel they’re becoming a burden on the family.

However, caregiving is regarded as a chronic stressor factor due to demanding activities and emotional involvement.

ECARIS (Educating Carers of Kidney Patients) project will focus on the needs and the problems

addressed by informal carers and professionals working with carers of patients with ESRD (End Stage Renal Disease) from Greece, Spain, Denmark, and Italy.

The “ME AND MY CARER” report responds to the 1st project aim,  collecting needs and experiences of families with a caring role in Greece, Spain, Denmark and Italy through a study conducted with patients affected by Kidney Diseases, living in Greece, Spain, Denmark and Italy.

The questions have explored how caring can have a different impact on carers from different countries, the types of support available, the role of education in wellbeing, impact on practical, emotional, social and family life and coping strategies.

To ensure geographical heterogeneity informal carers from each country have been consulted through a combination of different methods (interviews, focus group sessions, surveys) to obtain a good overview of the workshops. Due to the Covid-19 emergency, all these consultations were carried out remotely, via calls, online meetings (through Skype or Zoom) or online surveys.

Analysing the interviews carried out in all the countries involved in the research, it is possible to observe that most of the interviewed caregivers are female (65,79%, 25 out of 38 respondents).

Many of the respondents are over 65 and are therefore retired, while the younger respondents have a job; in cases when the patient is a daughter or a son, not all caregivers are able to keep the work-life balance and reconcile work, private like and duties linked to their caring role.

 Generally, carers of renal patients face two significantly different loads::

  1. When the patient is at an early stage of the disease, the main activities are accompanying their loved one to the hospital, helping with household maintenance or preparing meals. In these cases, caregivers report that they do not provide assistance for specific needs, but simply fulfil their role as a member of a family.
  2. In the second and more frequent case, in addition to the above-mentioned activities, there are mobility needs, finance management, medications management, enemas, operations, general health care actions and of medical tools’ cleaning.

Most caregivers of all nationalities involved are satisfied with the professional support received from different roles involved in care.

The project has its own dedicated website https://ecaris.eu/

NOTES TO EDITORS

ECARIS is co-funded by the European Commission under the Grant Agreement 2019-1-EL01-KA204-062967 WWW.ECARIS.EU “ECARIS WEB SITE PROJECT LAUNCH: EDUCATING CARERS OF KIDNEY PATIENTS”

Disclaimer

This press release reflects only the author’s point of view and the National Agency and the European Commission is not responsible for any knowledge that may be made and the information contained therein.