A systematic review of the information needs of partners and family members of cancer patients


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Eike Adams, Eila Watson, Mary Boulton

Oxford Brookes University, Oxford, UK

Abstract

A systematic review of the information needs of partners and family members of cancer patients

Background

The Cancer Reform Strategy has identified the improvement of cancer information as one of its main priorities. It calls for the provision of high quality, individually tailored information which has been shown to empower patients, reduce anxiety and distress, and help them make informed treatment decisions. As cancer impacts on the whole family, understanding the needs of partners and family members of cancer patients is also an essential part of providing quality care.

Method

We conducted a systematic search of 4 databases to determine what is known about the information needs of partners and family members of adults with cancer. 36 papers, published between 1999 and 2008, were included in the review.

Results

Several conclusions were drawn. Firstly, the concept of ‘information need’ is generally poorly developed and theorised. Secondly, the great majority of papers focus on either breast or prostate cancer, leaving a gap in our knowledge of information needs in relation to other cancers. Thirdly, although it has been argued that information needs change over the cancer trajectory, most papers focus only on the initial diagnosis and treatment phase, and very few address the needs of longer term cancer survivors.

Conclusion

Our review concludes that the information needs of partners and family members of cancer patients is an important, but as yet neglected, area of research. It suffers from poor conceptual and theoretical foundations and limited empirical research, issues which will need to be addressed if the promises as set out in the Cancer Reform Strategy are to be fulfilled.