Promoting agency among people with severe psychiatric disability Occupation-oriented interventions in home and community settings

................................................................................ 7 SVENSK SAMMANFATTNING...................................................... 9 ABBREVIATIONS ..................................................................... 11 DEFINITION OF CENTRAL CONCEPTS ...................................... 12 ORIGINAL PAPERS .................................................................. 14 PREFACE.................................................................................. 15 INTRODUCTION ...................................................................... 17 Theoretical and conceptual framework ................................... 18 Ability and disability ...............................................................18 Personal agency ....................................................................19 Activity and participation ........................................................21 Occupational perspectives: Person-environment-occupation .........22 Occupational justice ...............................................................23 Recovery ..............................................................................23 Living with psychiatric disability ............................................. 25 Psychotic disorders, treatment, and consequences in daily life......25 Daily occupations...................................................................26 Home and housing perspectives ...............................................26 Support, care, and rehabilitation services in home and community .............................................................................. 27 The deinstitutionalisation process and community living ..............27 Residential care.....................................................................28 Traditional contra recovery paradigm........................................29 Homeand community-based rehabilitation...............................29 Evidence supporting OT interventions..................................... 31 Previous research relevant for the development of OT interventions.........................................................................31 Intervention study design .......................................................33 Implementation of intervention................................................34 Rationale for the thesis ........................................................... 35 AIMS OF THE THESIS............................................................... 37 METHODS ................................................................................ 38 Overall research design........................................................... 38 The home context study (I) .................................................... 39 Setting, recruitment, and participants (I) ..................................39 Intervention: Recoveryand occupation-oriented rehabilitation (I) 40 Data-collection and methods of analysis (I) ...............................40 The ELR-intervention project (II-IV) ...................................... 41 Implementation and recruitment (II-IV) ....................................41 Intervention: Everyday Life Rehabilitation (ELR) (II-IV)...............42 Settings and participants (II-IV) ..............................................44 Procedure for data-collection (II-IV) .........................................45 Methods of analysis (II-IV)......................................................48 Ethical considerations (I-IV)................................................... 50 FINDINGS AND REFLECTIONS ................................................. 53 Summary of the studies I-IV................................................... 53 Changes in residents (I-IV) .................................................... 56 Rediscovering agency – occupational and identity transformations (I-IV)...................................................................................56 Changes among residents as experienced by CCWs (IV) ..............58 Changes in goal attainment, occupational, and health related factors (II)............................................................................58 Factors of importance (I-IV)................................................... 61 The housing facility context (I, III, IV) ......................................61 ELR with its core principles (II) ................................................64 Doing transformations (I, III) ..................................................65 Collaboration using a shared framework (IV) .............................66 Feasibility of the intervention, assessments, and collaboration (I-IV) ...................................................................................... 70 GENERAL DISCUSSION............................................................ 73 Main findings........................................................................... 73 The housing facility home, housing, workplace, and arena for rehabilitation.........................................................................74 The importance of understanding the transformative processes of the residents.........................................................................76 Client-centred praxis needed for enabling meaningfulness and agency in daily occupation of residents .....................................77 Late rehabilitation perspectives................................................78 Development of the ELR .......................................................... 80 Methodological considerations ................................................ 81 Overall study design...............................................................81 Assessments and statistical analysis .........................................82 Voices of persons with severe psychiatric disability .....................83 Voices of CCWs .....................................................................83 Researcher approach..............................................................84 Trustworthiness, reliability and validity .....................................84 Generalisation .......................................................................85 Implications for practice ......................................................... 86 ‘Out-of-housing’ strategies ......................................................86 Agent-supported rehabilitation.................................................87 Using ‘progressive tensions’ ....................................................87 Implications for future research ............................................. 88 ACKNOWLEDGEMENTS ............................................................ 90 REFERENCES ........................................................................... 93