• Jenny T van der Steen, Marcel Arcand, Franco Toscani, Tjomme de Graas, Silvia Finetti, Marie Beaulieu, Kevin Brazil, Miharu Nakanishi, Taeko Nakashima, Dirk L Knol, and Cees M P M Hertogh.
• EMGO Institute for Health and Care Research, VU University Medical Center, Amsterdam, The Netherlands. j.vandersteen@vumc.nl
• J Am Med Dir Assoc. 2012 May 1;13(4):368-75.

ObjectivesTo evaluate a booklet on comfort care in dementia from the perspective of family with relevant experience, and assess nursing home resident and family factors associated with evaluations.DesignRetrospective study.SettingLong term care facilities in French-speaking Canada, and the Netherlands and Italy.ParticipantsBereaved family (n = 138).MeasurementsAn 8-item scale assessed the booklet's acceptability. Usefulness was rated on a 0 to 10 scale, and perceived usefulness referred to usefulness if family had had the booklet during the resident's stay. Families indicated preferred ways of obtaining, and the most appropriate time to get the booklet.ResultsAlmost all families (94%) perceived the booklet as useful. Canadian and Dutch families evaluated the booklet's contents and format favorably, whereas Italian families' evaluations were less favorable. Almost all families endorsed roles for physicians or nurses and about half additionally accepted availability through own initiative, in print or through the Internet. Preference of timing was highly variable. Better acceptability, usefulness, and availability through own initiative were independently associated with non-Italian nationality, presence of more physical signs discussed in the booklet, feeling ill-prepared, and higher satisfaction with care. A preference of receiving the booklet early was more likely in Italian families, those without university education, and those involved with older residents.ConclusionThe booklet is suitable to inform Dutch and Canadian families on comfort care in dementia, but implementation in Italy requires further consideration. The booklet may be integrated in advance care planning in long term care, and made available outside long term care settings to serve families who wish to be informed early.Copyright © 2012 American Medical Directors Association, Inc. Published by Elsevier Inc. All rights reserved.

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