Table 5 Category scheme for test readers’ “negative” reaction patterns to health information with description and quotations

Disinterest (v)

This attitude became apparent in the lack of any personal relevance of the information (were not affected, had no personal connection or no consequences), the presentational style of the text or the context of the study. A loss of initial interest was also located in this category. Like interest, disinterest relates to the discussion guide, above all the aspect of whether the issue affects the readers personally.

My first impression is also that the text is too long and imprecise for me, too diffuse (T118: NT08101).

[…] As an ordinary reader I would have put it aside, but as an affected patient I would have read it (T52, 49: NT08045).

Dissatisfaction and disappointment (vi)

Both the overall impression and individual aspects such as the composition and structure of the text, a lack of explanation, or the study content (e.g. lack of evidence, or an irritating presentation of the numbers or the results) led to dissatisfaction, expressed in critical remarks and expressions of displeasure. Remarks about a lack of medical background information and recommendations for action were also coded as disappointment and dissatisfaction.

[I am uncertain] what the text is trying to tell me. With all my worries and needs and fears, I know exactly as much as I did before […] this text wouldn’t have helped me. (T114: NT08097).

It’s too bad that this patient information wastes its chance of bringing people to a more informed level. I don’t see how reading this puts people in a position to make an actual judgment about the advantages and disadvantages of the procedure. (T125: NT08077).

Anxiety and worry (vii)

Anxiety was caused by uncertainty about the readers’ own abilities, by the possibility that they might be affected by a serious illness, and by inconclusive data. The readers also had qualms about the therapeutic possibilities described which also prompted negative associations with the medical system. To some extent the readers distinguished their own anxiety from other readers’ possible worries about problematic effects and consequences. They discussed a distinction between feeling, e.g. the generation of fear, and potentially problematic action, e.g. discounting medication on their own authority.

The statement that the preparation can have side effects doesn’t give the reader a lot of assurance (T93: NT08069).

If the studies tell us so little, I wouldn’t feel safe starting such a therapy. I found everything so negative, I don’t know, am I the only one who felt that way? (T66 NT08049)

Doubt (viii)

This sceptical reaction pertained to the study background (unclear procedures, low level of evidence, questionable conclusiveness, or conflicts of interest on the part of the researchers). Unclear or contradictory phrasing and explanations and an ambiguous presentation of results and numbers also led to mistrustful feelings. Here readers also emphasised the perspective of other readers, e.g. doubts about the comprehensibility for non-native speakers or older people. This category relates to the discussion guide among others in its questions on the use of numbers, the comprehensibility of the text and the assessment of the credibility of those responsible for the text.

Weak effects, lots of open questions, […] what’s the point of this fact sheet if the studies aren’t far enough along or the whole research into Umckaloabo (T96: NT08069).

I’m surprised at this phrasing: the result of studies so far – I wonder why, so far, they haven’t finished evaluating the studies? (T133: NT08081).