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K13 Composing with huntington’s
  1. Emilie Hermant1,
  2. Valérie Pihet1,
  3. Jocelyn Jeandel1,
  4. Katrin Solhdju2
  1. 1Dingdingdong – Institute for the Coproduction of Knowledge about HD, Paris, France
  2. 2FWO, Vrije Universiteit, Brussels, Belgium

Abstract

The main objective of Dingdingdong (Ddd) – Institute for the Co-Production of Knowledge about HD – is to create knowledge about HD, which takes into consideration the expertise produced by persons affected by Huntington’s. In order to invent ways of revealing what is the experience people with HD are going through, Ddd initiates an exploration as a scientific work as well as a creation work. That’s why, in our team (15 persons), there are as many researchers as artists. The aims we are working on, as its methodology, are thought together with people with HD. This coproduction implies what we call HD “users”, meaning not only affected persons but also affected families, caretakers, doctors, physicians…

From 2013 to 2015, Ddd has done a large survey called “Composing with Huntington’s. HD in the care of its users.” This study has explored, mostly in France, two different kinds of fields:

  1. Literature and experiences about users as inspiration’s source, resources, teachers, instructors… in order to think about the possible applications of peer learning regarding HD.

  2. Exploration of informal and experiential knowledge about how to deal with HD, as it is experienced and shared within homes, associations, support groups, networks, care centres, and expertise centres.

Methodology nearly 80 interviews with patients, families, people at-risk, physicians, physiotherapists, speech therapists, social workers, psychologists etc. and heads of HD’s associations; qualitative analysis of this data by Ddd’s team from the interviews transcripts.

Outcomes a report written in direction to all the concerned actors about ways of composing the best harmonious relationship with HD (publication as a book in 2016); 7 proposals to encourage self-supporting and peer learning in HD in France; a qualitative cartography, for the first time in France, of all the lay associations.

  • self-supporting
  • peer learning
  • therapeutic patient education
  • illness ethnography
  • users’ testimonies
  • care studies
  • qualitative approach
  • pragmatic philosophy
  • arts

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