“Harrowing, adj. – that harrows or lacerates the feelings; acutely distressing or painful” (Oxford English Dictionary definition). This word best encapsulates our colleagues’ impressions after reading “Experiences, views and support needs of family members of people with hypoglycaemia unawareness: interview study”, a paper recently published in Diabetes Care (Lawton et al, 2014). Constituting part of a larger study investigating an intervention to restore awareness of hypoglycaemia among people with type 1 diabetes (De Zoysa et al, 2013), and developed in response to findings from a sub-study exploring individuals’ experiences of this condition (Rankin et al, 2013), Lawton et al report on a group in need of the support of health professionals.
Hypoglycaemia unawareness is characterised by warning symptoms of hypoglycaemia occurring at or below the glucose threshold for the onset of cognitive impairment, and can result in people with type 1 diabetes having a decreased ability to self-treat episodes of hypoglycaemia (Elliott and Heller, 2011). While clinicians know that many people with type 1 diabetes have some degree of hypoglycaemia unawareness, they may also have encountered examples where individuals’ family members have helped them to detect and treat hypoglycaemia. However, how many of us have stopped to consider the burden of living with a person with hypoglycaemia unawareness? Or how family members might be better supported?
In this study by Lawton et al, family members described leading restricted lives because they needed to constantly monitor their relative for signs of hypoglycaemia, which resulted in them turning down work- and social-related opportunities or neglecting their own health. Others recounted distressing experiences that left them feeling afraid of their loved ones when they became hypoglycaemic because they had the propensity to become verbally or physically abusive, particularly when prompted to treat low blood glucose.
Family members also described harrowing and traumatic events, such as finding relatives alone, unconscious and on the floor, which resulted in them feeling very anxious if the person with hypoglycaemia unawareness was left unsupervised. Relations also reported feeling drained and exhausted from monitoring and dealing with nocturnal hypoglycaemia, while several described resenting how hypoglycaemia unawareness had affected their lives. In addition, very few family members recalled having received support from health professionals or knew who to approach to seek advice, while others did not recognise their need for or their entitlement to seek help because they were not a patient themselves.
Hypoglycaemia unawareness is a very common problem (Elliott and Heller, 2011) not limited to type 1 diabetes, and, although some studies have shown that it can be reversed using high-quality structured education (Hopkins et al, 2012), it remains the leading cause of severe hypoglycaemia (Geddes et al, 2008). As well as potentially affecting a large number of people with diabetes, the study by Lawton et al has vividly shown how hypoglycaemia unawareness can have enormous practical and emotional consequences for family members. In their conclusions, the authors recommend that GPs keep a watchful eye on this vulnerable group and make opportunistic enquiries to explore how they are coping when attending routine consultations. To further and better address the unmet needs of this group, readers of the Lawton et al paper should consider how its findings might influence their own practice.