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Cultural context is important when designing end-of-life information resources

28 February 2013

New research has highlighted the importance of tailoring information resources for patients and their families to the country in which they live.

The research, published this month in the International Journal of Palliative Medicine, compared the the acceptability of a Canadian leaflet about end of life care in advanced dementia in France, Japan and Canada itself.

The leaflet is designed to provide information to the families of people with late-stage dementia about end of life care issues. It covers subjects such as the evolution of the disease and therapeutic options as well as the decisions that may have to be made around care, such as withdrawing and withholding treatment. As well as being produced in French and English Canadian versions, the leaflet has been translated in to Dutch, Italian and Japanese.

To test the quality and acceptability of the leaflet, the researchers surveyed nurses working in long-term care settings in Canada, France and Japan.

The information in the leaflet was generally rated highly in terms of quality and balance in all three countries. However, the acceptability of the leaflet varied, being at its highest in Canada, presumably because it was originally designed in this context.

Acceptability and perceived usefulness was lower among French nurses – the authors speculate that this could be because the leaflet was not adapted for France's cultural and legal context. Some French nurses also mentioned they did not like certain expressed used in the leaflet.

Acceptability was lowest in Japan – only 52% said they would be likely to give the leaflet to families in the near future. The most common reason given for not wanting to provide the booklet was that they feared it could increase anxiety and that they would rather talk to the families directly. Some Japanese nurses also said that they thought the literacy level of the booklet was to high for families. The authors also note that advanced dementia is not currently thought of as a terminal illness in Japan.

The authors also highlight the differences between countries of nursing practices, positions and education levels. For example, in Japanese nursing homes nurses do not currently have sufficient autonomy to provide the leaflet to families and discuss it with family members, and in France nurses are not generally trained to discuss specific treatment options with families, whereas Canadian nurses tend to have more autonomy.

The article 'Educating families about end-of-life care in advanced dementia: acceptability of a Canadian family booklet to nurses from Canada, France, and Japan', by M Arcand et al was published in volume 19, issue 2 of the International Journal of Palliative Nursing.

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