PARADISE final conference and recommendations
The PARADISE Coordination Action is an EC-funded project involving eight European countries (Germany, Spain, Italy, Belgium, United Kingdom, Poland, Finland, and Switzerland) with the goal of testing and implementing a novel approach to collecting comparable data about psychosocial difficulties experienced in common by individuals with brain disorders (or neuropsychiatric conditions). To test this approach, the PARADISE project selected a representative and heterogeneous sample of conditions: dementia, depression, epilepsy, migraine, multiple sclerosis, Parkinson’s disease, schizophrenia, stroke and substance dependency. The motivation for PARADISE was the realization that although there is strong evidence that the overall personal, social and economic costs of brain disorders are high, these costs have been underestimated. This is because of a lack of relevant data. These disorders have been defined in terms of diagnostic criteria which, though invaluable in identifying the underlying health problem and its etiology, will not include the full range of psychosocial difficulties that actually shape the lived experience of persons with these disorders. More recently the Resolution of 19 February, 2009 on Mental Health at the European Parliament has called for ‘an integrated and coordinated’ mental health strategy to serve the needs of people with brain disorders. The theoretical foundation of PARADISE is that the lived experience of persons with brain disorders is only partially explained by the specific signs and symptoms of any given health condition. Rather, and in addition, the difficulties people with these conditions experience in their day-to-day lives – the difficulties and problems that matter to them – are outcomes of an interaction between their health conditions and physical, social and attitudinal features of the world in which they live, as well as psychological factors that make up their individuality. These difficulties and problems – called disabilities in the International Classification of Functioning, Disability and Health (ICF, WHO, 2001) – are experienced as obstacles to full participation in all areas of life, such as self-care, education and employment, family and community life. The working hypothesis of the PARADISE project is horizontal epidemiology – the claim that the psychosocial difficulties that matter to people and shape their lives, are experienced across brain disorders and, hence, need to be measured comparably in order to understand the relative burden of brain disorders. Building on systematic literature reviews for each of the nine brain disorders, patient focus groups and interviews, and extensive input from clinical experts, PARADISE identified salient psychosocial difficulties and environmental and psychological determinants of the onset and course of these difficulties that are experienced in common across conditions. This information was used to build a draft data collection tool called the PARADISE Protocol that collected harmonized data with a coherent conceptual basis, generating comparable data across brain disorders, and was used to construct a metric of psychosocial difficulties. The final product of PARADISE is a Protocol with 24 questions on psychosocial difficulties, from which a profile of psychosocial difficulties of patients can be generated and compared, or a summary score created as a measure of the extent of difficulties. The Protocol in addition includes 11 determinants of the extent of difficulty, which also have been operationalized by clear, easy to comprehend questions. The PARADISE Protocol, and the harmonized data that it collects, creates the scientific evidence for PARADISE’s principal contribution to the European call for mental health strategy and for a future European strategy on brain disorders: that such strategies should augment purely medical interventions and open the door to a wide range of health and social interventions that address the psychosocial difficulties that are most relevant to people with those conditions. In addition PARADISE provides recommendations to guide European countries in the collection and analysis of data concerning psychosocial difficulties associated with brain disorders, as well as environmental and individual psychological determinants of the onset, extent and course of these difficulties. These recommendations in addition focus on the feasibility and importance of systematic data collection and analysis for the development and evaluation of health and social interventions that can address the psychosocial difficulties experienced in common by individuals with brain disorders. These difficulties are associated with the underlying health conditions, but are shaped by social and attitudinal environmental factors and individual psychological factors. Although the features of brain disorders constitute serious health problems that must be addressed, the PARADISE results show that, in addition, psychosocial difficulties constitute the obstacles individuals with these conditions confront in their lives – obstacles that limit their inclusion and full participation in society. PARADISE final conference agenda and participants: http://paradiseproject.eu/wp-content/uploads/2013/02/PARADISE_meeting-AGENDA-Participants.pdf(opens in new window) PARADISE final recommendations: http://paradiseproject.eu/wp-content/uploads/2013/02/PARADISE-Recommendations-FINAL.pdf(opens in new window)
Countries
Belgium, Switzerland, Germany, Spain, Finland, Italy, Poland, United Kingdom