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For Better or for Worse: Lifeworld, System and Family Caregiving for a Chronic Genetic Disease

Hagen N, Lundin S, O'Dell T and Petersén Å.

Culture Unbound 4: 537-557 (2012)


Modernity has meant a cultural and social differentiation within the western socie- ty, which, according to Jürgen Habermas’ theory on communication, can be seen as a division between different forms of actions that takes place in different realms of the society. By combining Habermas’ notions of lifeworld and system with Arthur Frank’s analysis of stories as a way to experience illness, the article performs a cultural analysis of the meeting between families involved in caregiv- ing in relation to Huntington’s disease and the Swedish welfare system. The eth- nographic material shows how caregiving is given meaning through communica- tive action and illness stories, which are broken up by an instrumental legal dis- course employed by the welfare system. This confrontation between communica- tive and instrumental action breeds alienation towards the state and the welfare system among the affected families. However, the families are able to empower themselves and confront the system through a hybrid form of action, which com- bines communicative and instrumental action. As such this hybridity, and the space that opens up on the basis of this hybridity, constitutes an important space within the modern society.