Translation, cultural adaptation and validation of the Quality of Dying and Death for the Portuguese language (Brazil)

Abstract

The re-signification of end-of-life care and the perceptions associated with the dying process are increasingly valued against the principle of quality, setting good death to that permeated by a process free of potentially preventable distress and suffering for the patient, family and caregivers. Quality of Dying and Death (QODD) was developed to measure the quality of death and dying, and the degree of preferences and perceptions of family members / caregivers in the face of death. It is a methodological study that aims to translate, adapt and validate the quality of dying and death for the Brazilian Portuguese language. This is a methodological study that will be divided into two stages: translation according to international guidelines, which will be attended by a group of reviewers (3 translators, 2 independent evaluators), 6 specialists and 20 health professionals (pre-test phase); validation with 280 formal / informal family / caregivers of patients who died at the adult ICU of the State Hospital and Bauru Base Hospital, as well as at the Hospital das Clínicas, Faculdade de Medicina de Botucatu. Family or formal / informal caregivers who accompanied the patient's death process during the period of ICU stay will be included; older than 18 years; of both sexes and who consent to participation. Participants will be interviewed in a period of 30 to x days after death. Formal or informal family or caregivers who report not having the emotional conditions to participate in the survey and / or are unable to locate will be excluded. Statistical analysis will be performed using IBM SPSS 22 software. The internal consistency of the items, reliability of the retest test and the existence of the floor and ceiling effect, as well as the instrument dimensionality, factorial structure and correlation with the sociodemographic aspects of the participants will be evaluated (AU)