Study protocol for the development of a European measure of best practice for people with long term mental health problems in institutional care (DEMoBinc)

BMC Psychiatry Killaspy, Helen King, Michael Wright, Christine White, Sarah McCrone, Paul Kallert, Thomas Cervilla, Jorge Raboch, Jiri Onchev, Georgi Mezzina, Roberto Wiersma, Durk Kiejna, Andrzej Ploumpidis, Dimitris Caldas de Almeida, Jose MiguelSixth Framework of the European Commission The study is funded by the Sixth Framework of the European Commission authors gratefully acknowledge this support. The authors would to acknowledge the contributions of the members of the International Expert Panel throughout the study and thank them for their valuable Jerry Tew (social scientist, UK); social care-Mr Tony Ryan ( independent consultant on out of area placements, UK), Mr Michael Clark Improvement Partnership, UK); rehabilitation psychiatry - Professor Tom Craig ( UK), Dr Frank Holloway ( UK), Dr Weeghel ( Netherlands), Dr Joanna Meder ( Poland), Professor ( UK); service user perspective - Mr Maurice Arbuthnott (UK). Ms Vanessa Pinfold ( Rethink, UK); human rights law - Associate Professor Fernando Barrios-Flores ( University of Granada, Spain); mental - Professor Peter Bartlett ( Nottingham University, UK); disability - Ms Liz Sayce ( Royal Association for Disability and Rehabilitation, standards - Dr Geraldine Strathdee ( Healthcare Commission, UK) . 23 BIOMED CENTRAL LTD LONDON 471UMBackground: This study aims to build a measure for assessing and reviewing the living conditions, care and human rights of people with longer term mental health problems in psychiatric and social care institutions. Protection of their human rights is imperative since impaired mental capacity secondary to mental illness can make them vulnerable to abuse and exploitation from others. They also constitute a major resource pressure for mental health services, social services, informal carers and society as a whole. Methods/Design: domains are identified by collating results from: i) a systematic review of the literature on institutional care for this service user group; ii) a review of the relevant care standards in each participating country; iii) Delphi exercises in partner countries with mental health professionals, service users, carers and advocates. Common domains and cross-cutting themes are agreed by the principal researchers and an international expert panel. Items are developed to assess these domains and incorporated into the toolkit which is designed to be administered through a face to face interview with the institution's manager. The toolkit is refined in response to inter-rater reliability testing, feedback from interviewers and interviewees regarding its utility, and feedback from key stakeholders in each country about its ability to deliver information that can be used within each country's established systems for quality assessment and review. Cross-validation of the toolkit ratings against service users' quality of life, autonomy and markers of recovery tests whether it can deliver a proxy-measure of the service users' experiences of care and the institution's promotion of their human rights and recovery. The ability of the toolkit to assess the "value for money" delivered by institutions is investigated by comparing toolkit ratings and service costs. The study will deliver the first international tool for the assessment of the quality of institutional care for people with longer term mental health problems that is accurate, reliable, informative, useful and easy to use.publishersversionpublishe