Sociologický časopis / Czech Sociological Review 2019, 55(5): 615-640 | DOI: 10.13060/00380288.2019.55.5.479

Experience, Expertise, and Users' Participation: The Case of the Czech Mental Health Care Reform

Petra A. Honová, Dino Numerato, Lucie Kondrátová

Fakulta sociálních věd, Univerzita Karlova, Praha

Národní ústav duševního zdraví, Klecany

This paper focuses on users' involvement in the reform of mental-health care in the Czech Republic, which, like in other countries, is connected with the destigmatisation of mental illness and the deinstitutionalisation of care. As part of the reform process, users' and caregivers' representatives were invited by the key stakeholders to participate in working groups, expert committees, and government bodies that associate users' and representatives of parents. At the same time, users and caregivers mobilised from below and participated in a number of bottom-up initiatives. Against this backdrop, this study set out to identify the main positions of patients and caregivers in the Czech process of reforming mental-health care. Moreover, the role of the different forms of knowledge that inspire civic engagement are examined. The study is based on an analysis of semi-structured interviews, primary and secondary sources, and field observations. First, the following four positions taken by users as part of their involvement in the reform of mental-health care are identified: guardians, negotiators, awakeners, and fighters. Second, this study discusses the complexity of relations between users' participation and knowledge, showing that the key source of users' involvement is personal experience, which is difficult to separate from expert knowledge. The paper concludes with a discussion of the implications of the complexity of relations between expertise and experience for users' involvement.

Keywords: mental health, expert knowledge, lay experience, patients' participation, mental health care reform, health social movement

Published: October 1, 2019Show citation