Rhetoric or reality?

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In this issue of JAN (pp. 318–327), there is a review of the literature on children’s choice in health care. The authors, Coad and Shaw (2008), conclude from their review that the children’s choice agenda is more rhetoric than reality. The problem with polarization, of course, is that, more often than not, the answer lies somewhere in the middle rather than at either extreme.

Any expectation of finding a body of ‘hard evidence’ from evaluative research that demonstrates the impact of children’s choice on practice and policy was probably unrealistic from the outset. The children’s choice agenda is a relatively recent development. The concept of patient and public involvement (PPI) is a very complex one, particularly so in relation to children and young people. Its realization on any real scale, and with any real depth, demands deep-rooted change in professional attitudes and the underlying culture of health services. Even the fact that the PPI agenda has been translated into strategies and policies is surely in itself a marker of real progress. Yes, these documents may well contain rhetoric, but surely a touch of exaggeration in our aspirations for PPI, and not least for children’s choice, is preferable to understatement. I think so anyway.

The overall conclusion drawn by Coad and Shaw does not really do justice either to their own review or to the progress that is being made in reality. But aside from niggling about their title, and suggesting that it boxed the authors into a corner, it is the content of their review that is really interesting and potentially really helpful. Yes, the literature does lack robust evaluative research. What has been published, however, provides important pointers to the kinds of research that we do need to be doing in order to build up a strong evidence base to underpin the children’s choice agenda.

The review highlights, for example, the kinds of barriers that are likely to inhibit real progress, including misguided professional attitudes and parental fears that children lack the capacity to make responsible choices. Importantly, the review also highlights that some key groups of children and young people have been under-represented so far in the research. These include very young children, youngsters from black and ethnic minority communities, children in care and those with mental illness and learning disabilities (p. 320). And, of course, these are the very groups likely to have greater need for customized health care and health services. ‘There is also the possibility’, say Coad and Shaw, ‘that the findings [of research so far] over-represent the views of the most articulate sections of society’ (p. 320). How to engage hard-to-reach groups is a challenge in many fields of research. This is probably nowhere more true than in relation to PPI where literacy and articulacy are essential skills for getting involved, engaging in consultation and exercising choice.

Is children’s choice in health care rhetoric or reality? Whether it is one or the other is not nearly as important as the many other searching questions that emerge from Coad and Shaw’s review paper.

Ancillary