Brazilian Translation, Cross-Cultural Adaptation, Validity, and Reliability of the EMpowerment of PArents in THe Intensive Care 30 (EMPATHIC-30) Questionnaire to Measure Parental Satisfaction in PICUs.

OBJECTIVES: To conduct the Brazilian translation, cross-cultural adaptation, validation, and reliability testing of the EMpowerment of PArents in THe Intensive Care (EMPATHIC-30). DESIGN: Prospective study. SETTING: PICU of a tertiary-care teaching hospital. PATIENTS: Parents (n = 141) completed the translated EMPATHIC-30 questionnaire 72 hours after their child's PICU discharge. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: The translation and cultural adaptation were performed in accordance with the principles of good practice for the translation and cultural adaptation process for patient-reported outcomes measures. Sentences were adapted according to the Brazilian syntax. Total content validity coefficient was above the established average (> 0.8). Reliability was evaluated with the coefficients McDonald omega and Cronbach alpha. The lowest Cronbach alpha found was 0.47 (CI 95%, 0.35-0.59) in the organization domain, where the lowest response rate was also concentrated. The values of the other domains were as follows: 0.64 (95% CI, 0.55-0.73) for information, 0.77 (95% CI, 0.71-0.83) for care and treatment, 0.72 (95% CI, 0.66-0.78) for parent participation, and 0.72 (95% CI, 0.65-0.79) for professional attitudes. The total internal consistency independent of the domain was 0.90 (CI 95%, 0.88-0.92). With regard to McDonald Omega, values were identified: 0.68 (95% CI, 0.49-0.88) for information, 0.73 (95% CI, 0.61-0.85) for care and treatment, 0.85 (95% CI, 0.47-0.80) for parent participation, 0.85 (95% CI, 0.76-0.93), and 0.72 (95% CI, 0.58-0.86) for professional attitudes. CONCLUSIONS: EMPATHIC-30 has been translated and culturally adapted for the Brazilian population. Validation demonstrated an above-average total content validity coefficient, confirming the instrument content validity. A sufficient reliability was observed in both analyzed coefficients. The results support the use of the Brazilian version of EMPATHIC-30 for the evaluation of parents' satisfaction of children admitted to the PICU.

Parents' perspectives on the deaths of their children in two Brazilian paediatric intensive care units.

OBJECTIVES: To evaluate the quality of care offered to terminally ill children and their families in the last days of life in two Brazilian Paediatric Intensive Care Units (PICUs) from the parents' perspectives. METHODS: This was a qualitative, exploratory study. Parents of a child who had died in one of the PICUs 6-12 months previously were invited to take part in two interviews: a private meeting with the PICU assistant physician who cared for their child, to discuss and review any outstanding issues related to the diagnosis, treatment, and prognosis, and a recorded interview with a researcher who was not involved in the child's treatment. Data from the interviews with the researcher were posteriorly grouped in categories according to recurrent terms. RESULTS: Six categories emerged, three of which are reported here. The quality of communication was low; the medical staff frequently used technical terms, limiting understanding. Parental participation in the decision-making process was scarce; decisions were based on the medical perspective. Finally, families reported uncompassionate attitudes from the medical staff and excessive technology in the final moments surrounding the child's death, although nurses were highly involved with palliative care measures and demonstrated sympathetic and supportive postures. CONCLUSION: The interviews uncovered deficiencies in the care provided to parents in the PICUs, indicating a need for changes in practice.