1. Les implications pour l’autonomisation d’un projet d’amélioration de qualité conduit par les usagers Barbara D’Avanzo, Angelo Barbato, Fabrizio Mauriello IRCCS, Istituto di Ricerche Farmacologiche Mario Negri, Milano Dipartimento di Salute Mentale di Pistoia

2. u Discrepant perspectives by users, providers and other stakeholders on a number of key aspects of quality of services. u Mental health service users are often socially marginalized and excluded. u Users are often deemed unable to express their opinion and therefore unreliable. u Involvement of service users in service evaluation is more and more common. u Users involvement and community based model of mental health care provision do not necessarely correlate. What is the relationship between quality and empowerment?

3. Characteristics and procedures u The service asks users to assess quality u Independent researchers collaborate u Focus group made by 14 users and researchers as facilitators u The users focus group defines indicators and wording of the items u The questionnaire is developed on this base and then validated u Users are trained to administer the questionnaire u The questionnaire is distributed and administered by users and professionals u Data are registred and analysed

4. Characteristics and procedures u Actions to improve quality are discussed (and implemented) u Second questionnaire administration u Data registration and analysis u Comparison between first and second survey, and assessment of improvement

5. 20102012 Relationship N Psychiatrist 179 10 Nurse 110 66 Rehabilitation therapist 83 78 Support worker 38 75 1. Professionals

6. 20102012 Competence/Skills N Psychiatrist 175 56 Nurse 107 25 Rehabilitation therapist 81 56 Support worker 66 48 Social worker 61 813 1. Professionals

7. 20102012 Benefits N Drugs 184 1411 Self help groups 49 2625 Vocational rehabilitation 66 1740 Supported employment 78 15 Side effects Drugs 185 2725 2. Treatments

8. 20102012 N Information about illness 189 29 Information about drugs 188 2632 Choice of professionals 187 5751 Choice of treatment 186 2018 4. Information and choices

9. 20102012 N Hospital1812115 Community mental health center 1891613 4. Reception and listening

10. Summary of findings Quality was perceived as moderate in most indicators Limited change between the two surveys (more apparent in one of the two centres – where changes had been made) Best scores in psychiatrist’s and nurse’s skills – efficacy?? Critical issues were choice information length of waiting medication side effects self-help groups

11. Even in a strongly community oriented service, consumers’ needs in sensitive areas are far from being fully met. Information, communication and choice are central issues: they mean exchange, and represent essential rights – if not met basic conditions are not met. Responsiveness – how well the health system responds to the population’s expectations of non-health aspects of health care

12. u How satisfying was this experience? The idea started from professionals. Users were willing to participate, but many had a passive attitudes. How was the discussion about findings and necessary changes conducted? Were changes implemented following the discussion? Paternalism? Difficulty to change if the change is indicated by users?

13. 1.A clear agreement between providers representatives and users representatives about aims, means and procedures of the project should be defined; 2.providers should be ready to change service procedures, interventions, values and even missions; 3.rules must be defined; 4.relationships between users/carers and professionals should not encompass any dependence and influence. What lacked?

14. The relationship between quality and empowerment is crucial if it is realized through participation, is aimed to democracy and guarantee of rights, and entails rules (as inherent to democracy and participation). QualityEmpowerment only through participation rules only through