A Balancing Act: An investigation of people’s experiences and explanations of recurrent hypoglycaemia and help-seeking behaviour

Abstract

Diabetes is a rapidly growing health concern in the developed world. Hypoglycaemia is a major risk factor in people with diabetes. Each year, about 7000 calls relating to hypoglycaemia are made to the Scottish Ambulance Service (SAS), including a considerable number of repeat callers. Very little is known about people’s experiences and explanations of recurrent hypoglycaemia; in particular, why some individuals manage their recurrent hypoglycaemic episodes independently, while others require more direct healthcare support. This thesis investigated participants’ experiences and individual explanations of recurrent hypoglycaemic episodes, in order to understand their health help-seeking behaviour. To do this, it compared the experiences of people who had called the emergency services within one month prior to recruitment (SAS participants), with those people who had not done so (non-SAS participants). The study employed a multiple methods longitudinal approach to prospectively capture participants’ experiences of hypoglycaemic episodes, using qualitative semi-structured interviews, hypoglycaemia and blood glucose diaries and follow-up telephone interviews over a six month period. Thirty participants were involved in the study, recruited through the Scottish Ambulance Service, Diabetes UK (Scotland), and the University of Stirling. All participants resided in the central belt of Scotland. Qualitative data was analysed using the framework method, and quantitative data was analysed using descriptive statistics. This study found that hypoglycaemic episodes had a wide ranging impact on people’s everyday life. It was not only the actual hypoglycaemic episode that affected participants’ everyday life, but also fears and worries about future hypoglycaemic episodes, the preparations that participants engaged in, and the process of recovery. Hypoglycaemia unawareness was found to be a major problem for many people living with diabetes. It appeared to be associated with the likelihood of needing external help. There were differences between participant groups with regard to management of hypoglycaemia unawareness. Non-SAS participants adopted strategies to prepare for future hypoglycaemic episodes, and appeared to be more knowledgeable about their diabetes and its management, resulting in needing less external help. SAS participants experienced more severe hypoglycaemic episodes. Consequently, they relied more on external help. Findings of this study call for a re-conceptualisation of the previously recognised ‘balancing act’ of managing diabetes and hypoglycaemic episodes. This study introduces the concept of a hypoglycaemic episode balancing continuum (HEBC) which enables a deeper understanding of the factors involved in this balancing act: it demonstrates that people balance the various risks differently, depending on whether they prioritised their fear of hypoglycaemia over fears of long-term complications. People’s position on the continuum directly affected their management strategies for hypoglycaemic episodes. Most hypoglycaemic episodes were managed by the individual without requiring any external help. However, participants’ ability to self-care differed and deficits occurred, resulting in participants being more likely to need involvement of others (family/friends). When the capacity of others to help broke down, participants’ were more likely to need SAS emergency care. In order to explain how hypoglycaemic episodes are managed, this thesis has developed a hypoglycaemic episode help-seeking network (HEHS network), which helps to identify the various agents involved in helping to manage hypoglycaemic episodes. Findings from this study have implications for clinical practice. For example, looking at hypoglycaemia unawareness, this study has shown that current understanding may fail to take account of participants’ real experiences, which show hypoglycaemia unawareness to be a fluid phenomenon that can affect people at various times. If blood glucose levels can fail to predict onset of hypoglycaemic episodes, healthcare professionals may need to broaden the range of blood glucose readings that might indicate a hypoglycaemic episode and tailor specific advice to individual patients. To reduce the use of emergency services, more attention must be paid to hypoglycaemia unawareness and better advice provided about this condition. Also, more education should be provided for family members/carers, given the crucial role they play in the management of diabetes and hypoglycaemic episodes, and being a link in the process leading to increased use of emergency services. The HEBC could be developed into a useful ‘screening tool’ to help healthcare professionals identify those at greater risk of hypoglycaemic episodes and those at greater risk of long-term complications, and to target advice more specifically to these patient groups. Further research could explore family member/carer knowledge in more detail to better understand their role in helping to manage hypoglycaemic episodes.