In a study to learn more about groups at risk of ill-informed decision-making, Simon and colleagues (2003) compared discussions of research participation involving Latino non-English-speaking parents (n-21), English-speaking minority parents (n-27) and English-speaking parents (white parents) (n-60). The research included clinical studies of cancer. Investigators reported that non-English-speaking parents received significantly fewer declarations from the approval form than the English-speaking majority group, received so much detailed information or explanations about the process, and asked questions about the process. For example, 48 per cent of the non-English-speaking group received explanations for the consent document, while 92 per cent of the English-speaking group did so. In addition, independent advisors assessed the explanatory notes and found that they had been made available to the first group with less success than the latter group. Unsurprisingly, investigators reported that comprehension problems were most common among non-English speaking parents. Only 14 per cent of these parents understood degeneratalization, while 60 per cent of the English-speaking majority group did so; 60% of non-English-speaking groups understood that participation in research was voluntary, while 90 per cent of the majority English-speaking group did so. In their discussion of the results, the authors suggested examining the „role of accuracy in interpretation and fatigue of communication, which often involves both interpreters and original spokespeople“ (Simon et al., 2003, p. 217). In their research on the experience of children with serious illnesses (for example.
B of the recurrence of cancer), Bluebond-Langner and his colleagues (in the press) found „evidence of children`s ability to have several, sometimes contradictory, views about their disease and what would offer treatment, a drug or a study. The children – and their parents – were able to realize that their condition was not curable, but that they nevertheless expressed faith or hope in the possibility of healing. With respect to serious illnesses, many children`s views on participating in a clinical trial can be recorded in a child`s statement: „What is the choice? It`s this or nothing. The researchers reported that the experience of children with serious illnesses was more predicted in their understanding of their disease and prognosis than in their age. Previous qualitative studies suggest that children with severe chronic diseases may develop a conceptual understanding of death earlier than healthy children (see z.B. Bluebond-Langner, 1978; and Sourkes, 1995). In some cases, parents may accept the participation of a child in the research, until the child, once approached, does not wish to participate and the child`s wishes are accepted. In other situations, parents and children can negotiate research participation decisions, as the opinions of young people tend to have more weight.