Translation and validation of the Portuguese version of the “care of the dying evaluation”

Ensuring cancer patients and their families receive high-quality care at the very end of life is of paramount importance. The manner a family member dies has a profound impact on the bereaved. One way to assess this care is by using a post bereavement questionnaire.

OBJECTIVE: The aim of the study was to translate into Brazilian Portuguese, conduct cross-cultural adaptation, validate and use a post-bereavement tool, “Care of the Dying Evaluation”.

METHODS: An observational, international, cross-sectional multicenter study in seven countries, through 2018 to 2020. In Brazil, participants were recruited from two hospitals, Hospital Estadual Sumaré and Hospital das Clínicas, and had been admitted for a minimum of 3 days before death. Translation of CODETM in keeping with international principles, and pre-testing using patient and public involvement and cognitive interviews with bereaved relatives.

RESULTS: The survey involved 235 bereaved family members, mostly female (70.6%), with 40% being sons and daughters of the deceased. Validity of the CODETM tool was assessed using confirmatory factor analysis, internal consistency through Cronbach’s α, and reliability via the Kappa coefficient and Spearman’s correlation. The study compared care quality perceptions between those who received palliative care and others. Findings revealed that 50.7% were informed about the dying process, and over 60% expressed that clarification of expected symptoms would have been beneficial.

CONCLUSION: The study confirms that the CODETM questionnaire is a valid and reliable tool for evaluating the quality of end-of-life care within the Brazilian Portuguese context.