In what ways can the narratives of those caring for a person approaching death from cancer and other illnesses be used to inform policy and practice and provide support to patients and carers in the future? - Tom Lynch

AIMS:
To identify and analyse a sample of narratives written since 1950 by the lay carers of people approaching death as a result of cancer or other illnesses.

METHOD:
A bibliographic search of libraries, journal and World Wide Web sources located English-spoken literature including books, poems, newspapers, journal articles, and internet postings of writings by the carers of people approaching death.

ANALYSIS:
Bibliometric and qualitative content analysis explored changing authorship, experiences, purpose in writing and reported impact on readers.

RESULTS:
The search strategy yielded a possible sample of millions of writings, fuelled by the internet. Application of first inclusion/exclusion criteria yielded 541 samples and application of second inclusion/exclusion criteria provided us with a purposive sample of 171 writings. A sub-sample of 70 writings was then subjected to content and thematic analysis. A significant change was observed in the quantity of literature relating to caring for a person approaching death over the specified timescale. Narratives ranged from a dearth of published literature in the 1950s to unprecedented internet communications in the 2000s. Patterns of writing changed over this period and differences were observed in writing about caring for a person approaching death as opposed to other life-threatening illnesses. The narratives revealed ethical, social, and emotional issues involved in caring for a person approaching death. Therapeutic benefits of sharing the story with others included the restoration of self-identity and the ability to provide a sense of meaning to the caring situation.

CONCLUSION:
Carers’ personal narratives may represent a neglected source of evidence to inform policy and practice. Selected writings reviewed in this study are displayed on the Macmillan Cancer Relief website, as an example of how others’ personal experience may be used to support patients and carers.