Around 50 % of people who develop type 1 diabetes do so as adults. A diagnosis of type 1 diabetes involves significant physical and psycho-social adaptation and currently little is known about the impact of the diagnosis in adulthood. Therefore, this study aimed to explore patients’ experiences of the diagnosis to get a better understanding of the adaptive process involved in transitioning to a life with type 1 diabetes.
Qualitative longitudinal data were collected from 30 adults diagnosed within the past three years recruited from hospitals in Denmark and the UK. A narrative approach was used for analysis to elicit the meaning of what this change in life holds for the individual.
Study participants identified that the diabetes diagnosis had an immediate disrupting impact on physical, psychological, and social aspects of their life. They reported feelings of anxiety about relationships and employment prospects which seemed to drive emotional reactions and a sense of frustration. They also developed fearful thoughts and anxiety regarding hypoglycaemia and diabetes complications, potentially impacting self-management negatively. While participants were taught technical skills and gained knowledge about their treatment, they lacked support in coming to terms with their diagnosis.
Adults newly diagnosed with type 1 diabetes experience significant physical and psychosocial disruption. This disruption can lead to unhelpful emotional and behavioural responses which may increase the risk of future diabetes complications and reduced psychological well-being. Adults need more psychosocial support following diagnosis as they transition into a life with type 1 diabetes.
Hypoglycemia is a common side-effect of intensive blood glucose lowering therapy in diabetes, and particularly in insulin-treated persons. Worries about [severe] hypoglycemia are common and particularly prevalent among insulin-treated persons with IAH. Fear of hypoglycemia may develop into a phobia, negatively affecting emotional wellbeing, social functioning and glycemic control.
In this lecture the phenomenon of Fear of Hypoglycemia [FOH] will be discussed from a psycho-behavioral perspective. Risk factors, consequences and intervention opportunities regarding FOH will be reviewed.
FOH is an emotional response to a real threat and therefore basically adaptive, causing heightened alertness and prompting the person to take action in order to prevent glucose levels falling too low and loosing control of oneself. To assess whether FOH is adaptive, the worry needs to be be viewed in light of the real risk.Having experienced one or more severe hypoglycemic events can be traumatic, both for the person with diabetes [but also for others witnessing the event, e.g. family, friends or colleagues. FOH can become phobic, i.e. disproportionate to the real risk and accompanied by passive and active avoidance behaviors. For example, people may avoid doing sports, driving alone and going out, check blood glucose levels very frequently, engage in defensive snacking and self-administer lower insulin dosages than required. This then leads to hyperglycemia and rising HbA1c levels that in turn may increase worries about late complications.
Assessment of FOH should be integral part of routine practice. One should be extra alert when persons of diabetes have experienced severe hypoglycemic events. For those with extreme FOH a referral to a psychologist should be considered. Counseling should include the partner of the person with diabetes as FOH often also affects the partner and s/he may inadvertently reinforce the persons FOH by acting as his or her 'phobic companion' .
For people with IAH, psychoeducational programs are available, e.g. BGAT, HypOS and HypoAware to help improve symptom awareness, management of hypoglycemia and lowering hypoglycemia-related distress.
FOH is a common and serious psychological complication that warrants clinical attention. Close monitoring of hypoglycemic events and related distress is recommended. In education and patient consultations, clinicians should aim to normalize FOH and offer guidance where needed. In case of impaired hypoglycemia awareness and/or repeated severe hypoglycemic events, it is imperative to adjust diabetes therapy and offer psychoeducational programs. In case of phobic FOH, a refferal for psychological counselling should be offered to help the person gradually regain confidence and lower fear.