PARTICULARITIES OF THE HOME-CARE DURING THE PROCESS OF DEATH: THE EXPERIENCE OF FAMILY CARETAKERS

Authors

  • Soraia Matilde Marques

DOI:

https://doi.org/10.5380/ce.v14i2.15637

Keywords:

Cuidado, Família, Cultura, Doença terminal, Morte, Care, Family, Culture, Terminal illness, Death, Familia, Enfermidad terminal, Muerte

Abstract

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.

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Published

2009-09-30

How to Cite

Marques, S. M. (2009). PARTICULARITIES OF THE HOME-CARE DURING THE PROCESS OF DEATH: THE EXPERIENCE OF FAMILY CARETAKERS. Cogitare Enfermagem, 14(2). https://doi.org/10.5380/ce.v14i2.15637

Issue

Vol. 14 No. 2 (2009)

Section

Nota Prévia

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