"This does my head in". Ethnographic study of self-management by people with diabetes
This study contributes to the understanding of the challenges of self-managing diabetes. It concludes that self-management of diabetes is physically, intellectually, emotionally and socially demanding. Non-engagement with self-management may make sense in the context of low personal resources (e.g. health literacy, resilience) and overwhelming personal, family and social circumstances.
It argues that success of self-management as a policy solution will be affected by interacting influences at 3 levels: at micro level by individuals' dispositions and capabilities; at meso level by roles, relationships and material conditions within the family and in the workplace, school and healthcare organisation; and at macro level by prevailing economic conditions, cultural norms and expectations, and the underpinning logic of the healthcare system.
The study findings support and extend those from previous studies which highlighted the need to align the self-management agenda with the social demands of people's everyday lives; their need to maintain a coherent identity and a "normal" social life; and the finding that poverty and the physical and social environment may impact on self-management. In particular, the findings resonate strongly with those of a previous study by the same team which highlighted a number of 'storylines' within which the practical tasks of self-management acquire social meaning and moral worth, including rebuilding spoiled identity, living a disciplined and balanced life, mobilising a care network, navigating and negotiating in the health care system, and making ethical choices (such as allocating a limited family budget)
'Non self-management' tended to occur in contexts where people's material, intellectual or emotional resources were stretched, including poverty, low health literacy, a demanding family or social context, or multiple co-morbidity - and especially when all these factors were present and interacting. Some healthcare staff appeared reluctant to accommodate advanced knowledge and/or self-managing attitudes and activities in their patients, especially when they did not have an ongoing care relationship with them. Food labelling in cafés and restaurants was inadequate to allow people with diabetes to apply advanced insulin dosage algorithms even when they were confident to use these.