Written information that relatives of adult intensive care unit patients would like to receive—A comparison to published recommendations and opinion of staff members*

Abstract

Information booklets have not been assessed by the families of intensive care unit (ICU) patients. This study explored the information that the relatives of adult ICU patients wanted to find in the information booklets. Multicenter survey. Twenty-three French ICUs. One close relative of each of 250 consecutive adult patients. Relatives were asked about the desirability of finding information on each of the 24 topics identified by ICU physicians and listed in guidelines as deserving inclusion in information booklets. None. The 250 patients (61% men) had a mean age of 60 +/- 18 years and a mean Simplified Acute Physiology Score II of 48 +/- 19; 57% had chronic comorbidities and 41% were surgical patients. At least 72% of the relatives felt that booklets should discuss nosocomial infections, treatment-limitation decisions, access to medical information on the patient, access to medical records, and the meaning of medical terms. Overall, relatives wanted more information than that anticipated by ICU physicians, suggested in guidelines, or found in booklets. However, for at least one of the 24 topics, 38% of relatives indicated that fear or poor comprehension made them unwilling to receive written information. These relatives were younger and had fewer years of formal education than did the other relatives, and they were more likely to be visiting conscious unrestrained patients. Opinions of relatives should be taken into account when designing ICU information booklets. Relatives want more information than that anticipated by physicians or suggested in guidelines, but the youngest or the less-educated ones may respond less favorably to written information.