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Given the complexities of trial communication when a child's life is threatened, the therapeutic misconception does not necessarily reflect a straightforward failure of the researcher to adequately explain the research methodology or of the parent to understand it.
The ethnographic data presented in this paper suggests that considerations of the entire clinical trial communication process, including the initial introduction of the idea of participation in research, should be considered elemental opportunities for addressing (and perhaps assessing) research literacy.
Thinking of consent as a social recognition of the parental role and aiming for 'best possible consent' may open up opportunities to develop approaches to trial communication which incorporate the flexibility for parents to construct what is for them a meaningful understanding of the research, as well as a meaningful exercise of parental responsibility.
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Reasons for this include ethical dilemmas in conducting such trials, communication barriers between specialties, and unclear standards for best care practices.
A total of 612 patients (44% of the 1395 who wanted results) thought that for future trials, communication of results to patients should come directly from ICR-CTSU.
Of the 165 women who discussed trial participation communication, 52 (32%) did not communicate trial participation to any partner.
Code frequencies and co-occurrences were examined for trends related to trial participation communication, ease of gel use, and partner's reaction to communication of trial participation.
41 In the second, an international diabetes trial, additional communication from the co-ordinating centre (frequent emails, individually tailored feedback on recruitment, etc) was compared with usual communication.
There were 14 retention trials of communication strategies and 20 trial comparisons.
Appreciation of the barriers and drivers towards participation is important for trial design, communication and information provision.
For instance, investigator meetings for the trial included communication skills training with an actor, which many investigators participated in.
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