The experiences, views and support needs of family members of people with Hypoglycaemia Unawareness: Interview study

  1. for the UK NIHR DAFNE Study Group
  1. aCentre for Population Health Sciences, University of Edinburgh, Edinburgh, EH8 9AG, UK
  2. bAcademic Unit of Diabetes, Endocrinology and Metabolism, University of Sheffield, Sheffield, S10 2JF, UK
  3. cDiabetes Research Group, King’s College London, London, Cutcombe Road, London, SE5 9RJ, UK
  1. *corresponding author: Julia Lawton, E-mail: J.Lawton{at}ed.ac.uk

Abstract

Objective Hypoglycaemia Unawareness (HU) affects approximately 25% of people with type 1 diabetes. People with HU are often reliant on family to detect hypoglycaemia and treat severe episodes. We explored the impact of HU on family members’ lives; their involvement in preventing and managing hypoglycaemia; and, their information and support needs.

Research Design and Methods Exploratory, qualitative design comprising in-depth interviews with 24 adult family members of people with type 1 diabetes and HU.

Results Family members described restricting their lives so they could help the person with HU detect and treat hypoglycaemia. Some described being very physically afraid of their partner/relative when they had a hypoglycaemic episode due to their aggressive and argumentative behaviour 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 wellbeing 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 recognise and accept their own need for help.

Conclusions Our findings reveal a caregiver group currently ‘in the shadow of the patient’ and in urgent need of information and emotional support. Raising awareness amongst healthcare professionals is essential and developing proactive support for family should be considered.

  • Received May 15, 2013.
  • Accepted August 18, 2013.

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This Article

  1. Diabetes Care
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