"This does my head in". Ethnographic study of self-management by people with diabetes

<p>Abstract</p> <p>Background</p> <p>Self-management is rarely studied 'in the wild'. We sought to produce a richer understanding of how people live with diabetes and why self-management is challenging for some.</p> <p>Method</p> <p>Ethnographic study supplemented with background documents on social context. We studied a socio-economically and ethnically diverse UK population. We sampled 30 people with diabetes (15 type 1, 15 type 2) by snowballing from patient groups, community contacts and NHS clinics. Participants (aged 5-88, from a range of ethnic and socio-economic groups) were shadowed at home and in the community for 2-4 periods of several hours (total 88 visits, 230 hours); interviewed (sometimes with a family member or carer) about their self-management efforts and support needs; and taken out for a meal. Detailed field notes were made and annotated. Data analysis was informed by structuration theory, which assumes that individuals' actions and choices depend on their dispositions and capabilities, which in turn are shaped and constrained (though not entirely determined) by wider social structures.</p> <p>Results</p> <p>Self-management comprised both practical and cognitive tasks (e.g. self-monitoring, menu planning, medication adjustment) and socio-emotional ones (e.g. coping with illness, managing relatives' input, negotiating access to services or resources). Self-management was hard work, and was enabled or constrained by economic, material and socio-cultural conditions within the family, workplace and community. Some people managed their diabetes skilfully and flexibly, drawing on personal capabilities, family and social networks and the healthcare system. For others, capacity to self-manage (including overcoming economic and socio-cultural constraints) was limited by co-morbidity, cognitive ability, psychological factors (e.g. under-confidence, denial) and social capital. The consequences of self-management efforts strongly influenced people's capacity and motivation to continue them.</p> <p>Conclusion</p> <p>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. Success of self-management as a policy solution will be affected by interacting influences at three levels: [a] at micro level by individuals' dispositions and capabilities; [b] at meso level by roles, relationships and material conditions within the family and in the workplace, school and healthcare organisation; and [c] at macro level by prevailing economic conditions, cultural norms and expectations, and the underpinning logic of the healthcare system. We propose that the research agenda on living with diabetes be extended and the political economy of self-management systematically studied.</p

Improvements in glycaemic control and cholesterol concentrations associated with the quality and outcomes framework: a regional 2 year audit of diabetes care in the UK

Aims: to determine whether there have been changes in glycaemic control and lipids in a cohort of people with repeated HbA1c measurements since the implementation of the Quality of Outcome Framework (QOF) for diabetes care.Methods: retrospective retrieval of computer held biochemical measurements of glycaemic control (HbA1c) and lipid profiles in adults in Hampshire, UK; between 2006 and 2008. Routine data on age, sex, HbA1c and plasma lipids were available on an NHS data-base on 8997 adults with data available for HbA1c in both 2006 and 2008.Results: in 2006, 39.7% of adults had glycaemic control within the QOF threshold (HbA1c &lt; 7.5%); by 2008, this proportion had risen to 52.1% (p&lt;0.001). In 2006, 11.8% of subjects had poor glycaemic control (HbA1c &gt; 10.0 %); by 2008, this proportion had decreased to 10.1% (p&lt;0.001). The proportion of subjects achieving HbA1c and cholesterol targets (both HbA1c &lt; 7.5% and total cholesterol ? 5.0 mmol/L) was 30.2% in 2006; in 2008, this proportion had increased to 43.7% (p&lt;0.001). Individuals with poorer glycaemic control (HbA1c &gt;10.0 %) were younger and had higher cholesterol concentrations than people with good (HbA1c &lt; 7.5%) or moderate (HbA1c 7.5-10.0 %) glycaemic control (p value for trend, both p&lt;0.001).Conclusion/interpretation: since the introduction of performance indicators for primary care and the incorporation of pay for performance in 2004, there has been marked improvement in the management of hyperglycaemia and hypercholesterolaemia among people with diabetes with data available in 2006 and 2008. It remains to be seen whether the new HbA1c audit target (HbA1c &lt;7.0%) introduced in 2009 will result in a further improvement in glycaemic contro