Journal Article

What is the lived experience for people with Leber Hereditary Optic Neuropathy?


This study aimed to hear the voices of seven people living with Leber Hereditary Optic Neuropathy (LHON), to examine their lived experience. The participants were recruited through a website and social networking sites designed for this community; they discussed their experiences in semi-structured interviews. The analytical process was informed by Interpretive Phenomenological Analysis (IPA) principles. This process illustrated a lived experience that was initially consumed by psycho-social losses and conflicts around identity. However, through pragmatic and resilient attitudes, the participants developed practical methods and emotional coping mechanisms that permitted their adjustment to sight loss and progression in life. Consistent with other studies, the fundamental finding was that the associated feeling of loss and frustration are chronic if, episodic, throughout life.

Attached files


Ferguson, J
de Abreu, G

Oxford Brookes departments

Faculty of Health and Life Sciences\Department of Psychology, Social Work and Public Health


Year of publication: 2016
Date of RADAR deposit: 2016-07-05

Creative Commons License This work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License

Related resources

This RADAR resource is the Accepted Manuscript of What is the lived experience for people with Leber Hereditary Optic Neuropathy?


  • Owner: Rosa Teira Paz
  • Collection: Outputs
  • Version: 1 (show all)
  • Status: Live
  • Views (since Sept 2022): 316