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Clinical characteristics–other
L10 Huntington's illness: the lived experience of Huntington's disease
  1. N Hagen1,
  2. S Lundin1,
  3. T O'Dell1,
  4. Å Petersén2
  1. 1Department of Arts and Cultural Sciences, Ethnology, Lund University, Lund, Sweden
  2. 2Department of Experimental Medical Science, Translational Neuroendocrine Research Unit, Lund University, Lund, Sweden

Abstract

Background Apart from the biological aspects of Huntington's disease (HD), HD can also be understood in terms of cultural and social frameworks which shape the lived experience of HD among the affected individuals.

Aims The aim of this interdisciplinary study between the medical and cultural sciences was to increase the understanding of how cultural and social factors shape the experience of HD among affected individuals.

Methods Semi-structured in-depth interviews were conducted with individuals affected by HD (n=10), using qualitative ethnographic methods. Key-features of the participants' experiences and practices in relation to HD were identified, and analysed through cultural and social theory.

Results The results of the ethnographic study showed that the lived experience of HD was centred on family care-giving for the sick individual, stigmatisation, the meaning of results from predictive genetic testing, and the use of new social media for support and communication.

Conclusions The cultural analysis revealed that lived experiences of individuals with HD, (as well as the experiences of their families), could be discrepant with the factual medical reality facing them, as highly abstract genetic tests and biomedical knowledge were culturally interpreted and incorporated into the daily lives of those individuals.

  • Cultural and social aspects
  • lived experience
  • ethnography
  • disease
  • illness
  • everyday life
  • cultural and social aspects of Huntington's disease

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