Experiences, Views, and Support Needs of Family Members of People With Hypoglycemia Unawareness: Interview Study

Abstract

OBJECTIVEHypoglycemia unawareness (HU) affects ∼25% of people with type 1 diabetes. People with HU are often reliant on family to detect hypoglycemia and treat severe episodes. We explored the impact of HU on family members' lives, their involvement in preventing and managing hypoglycemia, and their information and support needs. RESEARCH DESIGN AND METHODSThis study employed an exploratory, qualitative design comprising in-depth interviews with 24 adult family members of persons with type 1 diabetes and HU. RESULTSFamily members described restricting their lives so that they could help the person with HU detect and treat hypoglycemia. Some described being very physically afraid of their partner/relative when they had a hypoglycemic episode due to their aggressive and argumentative behavior and personality changes; this could also make treatment administration difficult. Family members also reported feeling anxious and worried about the safety of the person with HU, particularly when they were left unsupervised. These concerns were often precipitated by traumatic events, such as discovering the person with HU in a coma. Family members could neglect their own health and well-being to care for the person with HU and resentment could build up over time. Family members highlighted extensive, unmet needs for information and emotional support; however, some struggled to recognize and accept their own need for help. CONCLUSIONSOur findings reveal a caregiver group currently "in the shadow of the patient" and in urgent need of information and emotional support. Raising awareness among health care professionals is essential, and developing proactive support for family should be considered.

Improving management of type 1 diabetes in the UK: the Dose Adjustment For Normal Eating (DAFNE) programme as a research test-bed. A mixed-method analysis of the barriers to and facilitators of successful diabetes self-management, a health economic analysis, a cluster randomised controlled trial of different models of delivery of an educational intervention and the potential of insulin pumps and additional educator input to improve outcomes

“…Anger and resentment was common in family members' accounts, sometimes accompanied by a sense of guilt arising from the recognition that, when experiencing hypoglycaemia, patients could not be held responsible for their mood and behavioural changes. 142 Very few family members reported having ever been asked by a health professional how they were coping and if they needed information and support. All indicated a need for emotional support from people in similar situations to themselves and advice on how to help administer treatment when patients were hypoglycaemic and acting in argumentative ways, 142 and all were supportive of an intervention that could help patients address hypoglycaemia unawareness.…”

“…142 Very few family members reported having ever been asked by a health professional how they were coping and if they needed information and support. All indicated a need for emotional support from people in similar situations to themselves and advice on how to help administer treatment when patients were hypoglycaemic and acting in argumentative ways, 142 and all were supportive of an intervention that could help patients address hypoglycaemia unawareness. Family members of patients who attended the pilot intervention highlighted similar behavioural and emotional changes to those noted by patients.…”

“…As patients could act in argumentative, irrational and sometimes violent ways when hypoglycaemic, family members also worried about their own safety and the safety of their children and grandchildren. 142 Argumentative and aggressive behaviour could also make family members' attempts to help with treatment administration very difficult. Over time, caring for a person with hypoglycaemia unawareness was described as having had a detrimental impact on family members' own lives; some, for instance, reported exhaustion arising from constantly worrying about the person with hypoglycaemia unawareness and/or very poor, interrupted sleep because of their worries that the person with hypoglycaemia unawareness would slip into a coma or exhibit violent behaviour towards them during the night.…”

“…All family members had restricted their own lives as they saw patients as being reliant on them to help them detect and help treat hypoglycaemia, especially before attending the pilot intervention. 142 Family members described themselves as being in a constant state of alert so that they could pick up on cues that their relative's blood glucose levels were dropping. Many also described being fearful for their relative's safety if he or she was left alone, these concerns having often been precipitated by distressing events such as returning home and finding the person with hypoglycaemia unawareness collapsed on the floor.…”

Technology to Reduce Hypoglycemia

“…The more subtle effects of SH and hypoglycemia unawareness are often overlooked, with increased levels of anxiety, distress and marital conflict among spouses and family members. 14,15 In addition, hypoglycemia episodes have financial impact on health care cost utilization, 16 employment, 17 and driving. 18 Even NSHE can be a very unpleasant experience, the fear of which may be crippling and lead to disruptions to daily activities, affecting psychological well-being and diminishing quality of life.…”