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An important element of realistic information for carers was that the DA reinforced the fact that dementia had a trajectory of decline and included stories about the increasing care demands this deterioration brings: 'The [DA] information is good because they point out that it is never going to get better.
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Our conclusion is that although sensitivity remains an important attribute, using realistic information and values for sensitivity and specificity diminishes the influence of both attributes on preferences.
Common themes that emerged in reaction to the decision aid were: situating carers as empowered or passive, disagreements over carers' need for realistic information, and disparate perspectives as to whether the DA tool was useful for carers and/or health professionals.
One axis covers the positioning of carers as empowered on a continuum of more or less, and the second axis covers the positioning of carers' need for realistic information on a continuum of more or less.
We found, for example, that carers were positioned as empowered (on a continuum of more or less), and that this related to the a second axis of carers' need for realistic information (on a continuum of more or less) (See Figure 1).
A key position located the carer as an empowered subject needing realistic information as a crucial resource for managing his or her situation and planning for the future.
This stresses the need for detailed and realistic information before onset of the treatment programme emphasizing that headache can be improved but not yet cured.
These results indicate that although it may give valuable information about a family's ability to master the daily burden, IPFAM without coping subscale may in fact provide more precise and realistic information as a whole diagnostic tool for the actual impact.
The third position situated carers as passive, but needing realistic information, which would compel them to see and plan for the future.
Realistic information, honest advice and genuine encouragement are surely better.
This provides more realistic information about use of services.
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Justyna Jupowicz-Kozak
CEO of Professional Science Editing for Scientists @ prosciediting.com