Understanding the patient and carer experience

Patient narratives are a key source of information about the experience of receiving care. Understanding this experience helps professionals in providing care tailored to patient need and in developing empathy. There is a paucity of information about the patient experience, other than from academic journals or textbooks, although increasingly the Internet is proving to be a source of patient narratives, for example www.healthtalkonline.org. Although surveys presented in research papers are useful sources in conveying the difficulties that patients face, they do not describe the emotions and difficulties that patients and their carers go through. The clinical records can be difficult to access and often contain only the facts and interpretations by professionals. Recently, there has been an effort to encourage patients to add their 'narrative' to the clinical record. However, the uptake has been low. At the time of acute illness, many patients might not be able or wish to contribute a narrative to their record, and on recovery, with the multiple teams involved, there is a lack of clear locus about whom should request such a narrative and where it is best held.

Currently, fiction provides a useful way through which professionals and students can tap into the subjective experience of the patient. As Oyebode has observed:

What the arts and humanities can do for psychiatry is to reinforce the importance of the subjective. Our current diagnostic approaches emphasise the objectivity of symptoms and understate the importance of how these symptoms are experienced by people; this despite the fact that the roots of clinical psychopathology lie in phenomenology.11

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