Mental health service user movements post de-institutionalization – forms of organization and attitudes to services

Primary investigator:Urban Markström, Umeå university

Collaborators: Stefan Sjöström and Hilda Näslund, Umeå university

Grant: Forte 2016-2018

The project investigates social movements on the mental health field against the background of the reforms and ideology shifts during the last couple of decades. Health movements in general play an increasingly important role in society, and those within the MH field represent some of the most vulnerable groups in society.

Previous research has primarily focused on formal service user organizations (SUOs) and how these work towards influencing policies and improving rights for patients. SUOs face new challenges as the Swedish MH care system becomes more complex, increasingly relies on private service producers, is governed by the ideology of evidence-based practice and MH problems are re-conceptualized through a growing number of diagnoses. In recent years, new forms of informal service user engagement have arisen, often channeled through the internet and social media. The established SUOs thus have to reposition themselves and risk coming in conflict with previously taken-for-granted goals as well as arising competing social movements. What are the views of different movements and in what sense do they represent larger user groups?

Three inter-related studies will be carried out

  1. An international review of user movements. A traditional review of the scholarly literature is combined with data collection about overall patterns in four settings: Finland, England/Wales, France and the state of New York.
  2. A survey of SUOs and informal movements. An inventory will be made of all existing SUOs in Sweden. In addition, an inventory is made of the different forms of informal movements that exist.
  3. Case studies of SUOs and informal movements. Data from both national and local levels are collected from three selected SUOs: webpages, internal documents, interviews with key actors, field observations of meetings and activities. In addition, 3-5 informal movements are chosen, collecting similar sorts of data.