Aproximación a los cuidados informales de enfermos renales crónicos en el complejo hospitalario de Jaén

Abstract

The purpose was to discover the characteristics of the informal care that chronic renal patients receive in the dialysis programme of the hospital. To do so, we designed a transverse descriptive study carried out over two stages. We worked with professionals, patients and informal carers, heads of Service or Unit, supervisors and senior CAPD and teaching programme nurse. We obtained information through a questionnaire given to each professional and patient in the Dialysis Units. Another questionnaire was given to the main patient carers. The heads of Service, supervisors and senior CAPD nurse CAPD reported through a semi-structured interview. The results show that the demand for informal care concerns the need for help in: 1) using healthcare services; 2) dealing with issues and activities arising as a result of the kidney disease (medication, diet, control of intake of liquids and weight gain between dialysis sessions; 3) preparing dialysis sessions; 4) carrying out instrumental activities; 5) carrying out activities of daily life and 6) covering the needs of personal self-realization. Care is provided by the most immediate family, and the main carer is normally a woman. Almost half of them are unaware of the existence of social services providing help and 90% never use them. The impact of the task of carer on the life of these people is important. A need can be seen to create infrastructures for the education of carers, and to increase and publicize resources and aid available for informal carers.