Alderson, Priscilla; Ehrich, Kathryn; Hawthorne, Joanna; Killen, Margaret; Warren, Inga; (2004) Foretelling futures: dilemmas in neonatal neurology: a social science research project, 2002-2004. Social Science Research Unit, Institute of Education, University of London: London.

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Abstract

This end-of-project report has been written for the project funders, The Wellcome Trust, and for individuals who generously helped with the research. The report is also intended to be a background resource for readers who would like to know more details about the „foretelling futures‟ research, the context, aims and methods, and the neonatal units and families involved in the project. Most of the time on writing up the „foretelling futures‟ research has been devoted to writing papers for academic and professional journals, for several reasons: to publicise the research to a wide readership; to try to do justice to the wealth of data that has been gathered; to use the critical peer review process to enable us to write to higher standards; through publication, to join in long-standing international neonatal discussions; to show how social science observations and analyses can be relevant to current controversies, policy and practice. For these reasons, and perhaps unconventionally, the main part of this report, section 4, provides summaries of the journal papers that have been or are being written so far. The aim is to provide a guide to the range of findings that are emerging from the project, and to show how the papers relate together and fit into five themes: families in the NICU; babies‟ rights; sharing information, dilemmas and decisions; time; and knowledge. The brief summaries in this report are not given as alternatives to reading the papers, which explain issues in greater detail and with more examples that readers can interpret for themselves. Instead, the summaries are intended to encourage readers to refer to the journal articles. Section 2 shows that the protocol raised seven exploratory research questions. We received numerous varying, complicated, and sometimes contradictory responses to these questions from the practitioners and parents and the related multidisciplinary literature, and no simple answers. The journal papers go some way towards answering some of the questions. We have much more material from the observations and interviews that could provide further answers, if we had more time for analysis and writing of papers. Because each paper separately and at some length explores answers to one or more of the research questions, we have not tried to summarise the answers into a concluding section. Instead, section 5 gives a four-page summary about the whole project and some key findings.

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