A Family Booklet About Comfort Care in Advanced Dementia: Three-Country Evaluation

A Family Booklet About Comfort Care in Advanced Dementia: Three-Country Evaluation

A Family Booklet About Comfort Care in Advanced Dementia: Three-Country Evaluation

A Family Booklet About Comfort Care in Advanced Dementia: Three-Country Evaluations

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Référence bibliographique [11550]

van der Steen, Jenny T., Arcand, Marcel, Toscani, Franco, de Graas, Tjomme, Finetti, Silvia, Beaulieu, Marie, Brazil, Kevin, Nakanishi, Miharu, Nakashima, Taeko, Knol, Dirk L. et Hertogh, Cees M. P. M. 2012. «A Family Booklet About Comfort Care in Advanced Dementia: Three-Country Evaluation ». Journal of the American Medical Directors Association, vol. 13, no 4, p. 368-375.

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Fiche synthèse

1. Objectifs


Intentions :
«To educate families of nursing home residents with dementia on comfort (palliative) care, a booklet has been developed for use in Canada. The booklet informs on the course of the dementia, expected complications, decision making (eg, regarding antibiotics and feeding tubes), dying, and grief […] The objective of the study was to evaluate content and format, and to describe acceptability, usefulness, preferred way of obtaining the booklet, and best timing of the booklet from the perspective of bereaved family». (p. 369)

2. Méthode


Échantillon/Matériau :
L’échantillon est composé de 138 familles endeuillés provenant de trois pays: les Pays-Bas, l’Italie et le Canada (Sherbrooke et Magog).

Instruments :
Questionnaire

Type de traitement des données :
Analyse statistique

3. Résumé


«There was great support for its contents in the development setting (French-speaking Canada) and in the 2 European countries in the study. The results suggest that the booklet has the potential to help many families who face common challenges in late-stage dementia. […] However, the booklet was found highly acceptable and useful by Canadian and Dutch families, but less so by Italian families. Similar to Italian families, Italian practitioners also rated the booklet less favorably than did Dutch practitioners. […] Almost all families endorsed roles for practitioners in providing the booklet, with the specific professions varying across settings, and about half favored availability through their own initiative. Preferences for who should provide the booklet among families were similar to those preferred by European practitioners. In a community study, most families wished information by a practitioner, backed up by written material. Preference of timing was highly variable across both individuals and countries. Only a few factors were associated with a preference of receiving the booklet early. These were families of older residents, with no university education, and Italian nationality - the last 2 of which might be related to lower access to information.» (p. 372-374)