SINGULARIDADES DO CUIDADO DOMICILIAR DURANTE O PROCESSO DE MORRER: A VIVÊNCIA DE FAMILIARES CUIDADORES

It is an ethnographic study aiming to understand the experience of family members who were responsible for the daily home-care of an end-stage patient. It included 16 female participants, ages varying from 29 and 83 years old, all of them residing in Belo Horizonte. All patients were under the care of the participants by the time the interviews took place. All patients were also at the end-stage of the illness, under peculiar circumstances. Data collection happened through observation of the participants, according to Leininger, associated with the ethnographic interview as proposed by Spradley. The data analysis followed Leininger’s proposition of ethnographic research. 14 (fourteen) cultural descriptors were found and they lead to the identification of the following headings: becoming a caretaker; understanding the vicissitudes of the home-care and experiencing the lonely care. These headings worked as a background to the central theme: learning through the experience of pain and death. Reflecting upon the interviews, the headings and the central theme were essential for a deeper understanding of the beliefs, values, feelings and needs of the family member as a caretaker. The lack of knowledge about the proper care to be offered comes from the fact that the health system and professionals do not include family members in the nursing process, thus contributing to the great deal of difficulty faced by the family when the patient is in a home-care situation. However, all the participants showed motivation to overcome the difficulties faced due to lack of technical knowledge and personal limitations. Adapting the patient’s care to a possible human and economical conditions offered the caretakers a chance of total dedication putting themselves on second place in an attempt to minimize the pain of those who were experiencing an end-stage illness.