Om patientföreningar och kunskapens kärna En kritisk realistisk studie av patientföreningar, diagnoser och vetenskap

Abstract

Aims: Patient associations have been around for some time and research has shown that such associations can influence society, politics and how diagnoses are thought of. This study is a comparative analysis of two patient associations in Sweden. The first association called Attention represents people diagnosed with neuropsychiatric disorders such as ADHD. The other association called RSMH represents people diagnosed with mental illness such as depression. The aim of this study is to explore the social and political agenda of these associations and to explain their relation to biological, psychological and social models of explanation. Method and theory: The method used was a qualitative document analysis using documents produced by the associations themselves as well as documents from media and politics. These documents were studied using a critical realist theoretical framework. Critical realism assumes a reality that is independent of our knowledge and that social science should not simplify this reality due to the risk of missing out on underlying structures and causes. In addition Margaret Archer’s structure/agency theory was used to explain the role of patient associations in social change. Findings: Patient associations are shown to be active participants in politics and media. The comparison between the two associations shows that they have different models of explanation for their diagnoses and thus different views on science and knowledge. Attention uses a neuropsychiatric framework in order to explain the disorders as biological entities. RSMH has got a more complex view concerning knowledge, and often but not exclusively use social explanations. Critical realist theory shows that these knowledge claims are connected to a larger social context. It is also argued that a complex view represents the reality of the diagnoses better. The study concludes by connecting the associations and their diagnoses to a bigger picture of underlying explanations including medicalization theory.