Storylines of self-management: narratives of people with diabetes from a multiethnic inner city population.

Abstract

OBJECTIVES to analyse the narratives of people with diabetes to inform the design of culturally congruent self-management education programmes. METHODS the study was based on quasi-naturalistic story-gathering; i.e. making real-time field notes of stories shared spontaneously in diabetes self-management education groups in a socioeconomically deprived London borough. Eighty-two adults aged 25-86, from six minority ethnic groups who were in the intervention arm of a randomized controlled trial of story-sharing, participated. Stories were translated in real time by the facilitator or group members. Ethnographic field notes were transcribed, and analysed thematically (to identify self-management domains raised by participants) and interpretively for over-arching storylines (i.e. considering how self-management domains were contextualized and made meaningful in personal narratives). Analysis was informed by both biomedical and sociological theories of self-management. RESULTS people with diabetes identified seven self-management domains: knowledge; diet; exercise; medication; foot care; self-monitoring; and attending check-ups. Interpretive analysis revealed eight illness storylines within which these practical issues acquired social meaning and moral worth: becoming sick; rebuilding spoiled identity; becoming a practitioner of self-management; living a disciplined and balanced life; mobilizing a care network; navigating and negotiating in the health care system; managing the micro-morality of self-management 'choices'; and taking collective action. CONCLUSION living with diabetes involves both medically recommended behaviours and complex biographical work to make sense of and cope with illness. Self-management education programmes should take closer account of over-arching storylines that pattern experience of chronic illness and recognize that some elements of self-management knowledge cannot be pre-specified in a structured curriculum.

DOI: 10.1258/jhsrp.2010.009160

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@article{Greenhalgh2011StorylinesOS, title={Storylines of self-management: narratives of people with diabetes from a multiethnic inner city population.}, author={Trisha Greenhalgh and Anna Collard and Desir{\'e}e Campbell-Richards and Shanti Vijayaraghavan and Farida Malik and J. Garrett Morris and Anne Claydon}, journal={Journal of health services research & policy}, year={2011}, volume={16 1}, pages={37-43} }