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Keywords:

  • biographical disruption;
  • embodiment;
  • genetic testing;
  • identity;
  • monogenic diabetes

Diabet. Med. 27, 838–843 (2010)

Abstract

Background  Identification of genes causing monogenic diabetes has led to treatment change, from insulin to sulphonylureas for many previously considered insulin dependent. Changing treatment has led to improved glycaemic control and quality of life; however, the impact of a genetic diagnosis and consequent treatment change on identity has not been explored.

Methods  This paper examines the experiences of patients and their families using Bury’s theory of biographical disruption in chronic illness to offer insight and comparison with the disruption caused by treatment change following genetic testing. This qualitative study is a longitudinal follow-up using in-depth interviews over time. Thirty-one individuals were interviewed following genetic testing and again 12 months later.

Results  Key themes identified were: (i) embodied practices of diabetes; (ii) perceived identity on insulin; (iii) ‘holding on’ to insulin treatment; (iv) challenges and benefits of treatment change; (v) identity reconstruction. Participants were categorized into ‘Transferers’ who successfully transferred to sulphonylureas, ‘Attempters’ who attempted transfer but recommenced insulin and ‘Decliners’ who declined treatment change.

Conclusions  Injecting insulin was integral to participant’s lives and fundamental to their identity. Embodied practices of diabetes were deeply embedded in self identity; the possibility of stopping insulin injections was a major challenge contradicting previous beliefs and led to identity reconstruction.