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


CONCLUSIONS
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.
Greenhalgh
Trisha
T
Queen Mary University of London, London. p.greenhalgh@ucl.ac.uk
Collard
Anna
A
Campbell-Richards
Desirée
D
Vijayaraghavan
Shanti
S
Malik
Farida
F
Morris
Joanne
J
Claydon
Anne
A
D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D018864:Cultural Diversity; D003920:Diabetes Mellitus / Q000208:ethnology* / Q000628:therapy; D005006:Ethnicity / Q000193:education; D005260:Female; D006801:Humans; D008131:London; D008297:Male; D008875:Middle Aged; D008913:Minority Groups / Q000193:education; D033262:Narration; D011204:Poverty Areas; D016730:Program Development; D012648:Self Care; D012657:Self-Help Groups; D014505:Urban Population