RECOVERY RECOVERY from from SCHIZOPHRENIA SCHIZOPHRENIA How How is is itit Defined Defined and and How How is is itit Achieved? Achieved? Robert Paul Liberman, M.D. Distinguished Professor of Psychiatry, UCLA School of Medicine Director, UCLA Psych REHAB Program WHAT IS RECOVERY ? Like all medical and mental disorders, recovery is a process from disability to a state of relatively normal functioning in society. • • There are two prevailing concepts of recovery: – A personal and subjective experience of recovering from disability – Reaching a sustained stage of recovery Distinctions between recovering and recovery RECOVERY from SCHIZOPHRENIA Functional Recovery • • • • • • Symptoms not intruding on everyday life Independent living – managing one’s own meds and money Work or school at least half time in normative settings Cordial relations with family Social outings with one or more friends at least once/ week Recreational and social activities in normative settings Personal Experience of Recovery • • • • • • • • Living with dignity Meaningful and satisfying life Hope for a better future Self-responsibility Empowerment for achieving one’s goals and autonomy Self-respect and self-efficacy based on strengths Choices and self-direction in treatment and social services Collaboration in partnership with mental health providers DEFINITIONS OF RECOVERY “Persons have recovered when symptoms of their illness do not intrude on their functioning in everyday life, permitting them to work, attend school, participate in social and recreational activities and live as independently as possible in normal, community environments without being segregated in enclaves of the mentally ill.” (Liberman & Kopelowicz, 2005) CLINICAL CRITERIA for RECOVERY The criteria below are sustained for 2 years: • Remission from positive and negative psychotic symptoms as well as associated or co-morbid disorders to the extent that the symptoms do not intrude on everyday functioning (e.g., BPRS symptom scales at “moderate” or less) • Living independently – managing one’s self-care, money and medication autonomously • • Working or attending school at least half time • • Recreational activities in normative settings Social contacts with peers at least once/week in normative community settings Cordial relations with family ATTRIBUTES of the RECOVERING PROCESS • • • • • • • • Hope Empowerment Self-direction, self-help, peer support Self-responsibility, consumer-run enterprises Resilience in response to adversity Success in meeting one’s personal goals Getting on with one’s life Achieving self-value for a satisfying life with dignity DEFINITIONS OF RECOVERY “Mental health recovery is a journey of healing and transformation enabling a person with a mental disability to live a meaningful life in the community of his or her choice while striving to achieve his or her full potential.” (Consensus Conference of Substance Abuse & Mental Health Services Administration, 2005) DEFINITIONS OF RECOVERY “Recovery is a way of living a satisfying, hopeful and contributing life even with limitations caused by the illness. Recovery involves the development of new goals, aspirations, meaning and purpose in one’s life as one grows beyond the catastrophic effects of mental illness.” (Anthony, 1993) DEFINING RECOVERY SUBJECTIVELY is FREIGHTED with PERPLEXITY “In the case of a word like recovery, not only is there no agreed definition, but the attempt to make one is resisted from all sides. It is almost universally felt that when we say that a person is in recovery we are celebrating him. Consequently the defenders of every kind of psychological ideology claim that they know what recovery is, and fear that they might have to stop using the word if it were tied down to any one meaning. Thus, the term recovery consists largely of euphemism, question-begging and sheer cloudy vagueness.” George Orwell “Politics and the English Language” HOW HOW CAN CAN FUNCTIONAL FUNCTIONAL RECOVERY RECOVERY BE BE MEASURED? MEASURED? • • • • • • • Client’s Assessment of Strengths, Interests and Goals UCLA Expanded Brief Psychiatric Rating Scale Independent Living Skills Survey WHO-DAS and other social adjustment scales Social and Occupational Functioning Assessment Scale Criterion-based ratings from interviews with patients, family and significant others Social Integration Scale HOW HOW CAN CAN SUBJECTIVELY SUBJECTIVELY EXPERIENCED EXPERIENCED DIMENSIONS DIMENSIONS OF OF RECOVERY RECOVERY BE BE MEASURED? MEASURED? • • • • • • • • Consumer Empowerment Scale Self-Efficacy Scale Beck Hopelessness Scale; Hope Scale Illness Locus of Control Scale Quality of Life Scale Recovery Assessment Scale Self-stigma Scale Qualitative interviews using criteria for credibility, transferability, dependability and confirmability HOW ARE PERSON-CENTERED, CLINICAL SERVICES ORGANIZED and DELIVERED to PROMOTE RECOVERY? ENGAGEMENT, GOAL SETTING and MOBILIZING NATURAL SUPPORTS.......... Motivational enhancement EXPECTING DIGNITY & RESPECT…………............. Warm greetings at encounters COLLABORATIVE RELATIONSHIPS……………. Patient & family as experts & partners HOPE for a BETTER FUTURE…………… Induction of realistic optimism INFORMED, SHARED DECISION-MAKING…………. Choosing medications HOW ARE PERSON-CENTERED, CLINICAL SERVICES ORGANIZED and DELIVERED to PROMOTE RECOVERY? (cont’d) PERSONAL RESPONSIBILITY…............... What do you need to attend treatment regularly? SELF-MANAGEMENT of ILLNESS …………..…………. Developing a relapse prevention plan EMPOWERMENT…….……… Social skills training PARTICIPATION in COMMUNITY LIFE ….………. Registering to vote POSITIVE IDENTITY with SELF-ESTEEM ……………… Giving contingent positive reinforcement HOW MANY RECOVER from SCHIZOPHRENIA? % Recovered 100 90 80 70 60 50 40 30 20 10 0 45 USAChicago CHRONIC 46 48 53 53 57 USAWHOSwitzerland- Germany- SwitzerlandIowa Bonn International Berne Zurich CHRONIC MOSTLY CHRONIC MIXED CHRONIC 1ST EPISODE HOW MANY RECOVER from SCHIZOPHRENIA? % Recovered 100 90 80 70 60 50 40 30 20 10 0 89 64 68 91 93 74 JapanUSAUSANova Scotia- AustraliaUSAUrban Halifax Melbourne Los Angeles Vermont New York MOSTLY CHRONIC 1ST EPISODE 1ST EPISODE 1ST EPISODE 1ST EPISODE DIMENSIONS of RECOVERY in EARLY PSYCHOSIS 80 70 70 60 50 % of clients % of clients 60 50 40 30 Positive symptoms Negative symptoms Disorganized 20 10 0 40 30 20 Daily Living Life Line 10 0 Baseline 6 months Symptoms 12 months Baseline 6 months 12 months Psychosocial Functioning Whitehorn et al., 2002 UCLA AFTERCARE PROGRAM Recent-Onset Schizophrenia One Year Outcomes Positive Symptom Remission Negative Symptom Remission 83% 72% Employed or at School 0 20 40 93% 60 Percent of Patients 80 100 Nuechterlein et al., 2006 METHODOLOGICAL METHODOLOGICAL DILEMMAS DILEMMAS IN IN THE THE DEFINITION DEFINITION OF OF RECOVERY RECOVERY • • • Categorical or dimensional definitions; what are their advantages and disadvantages? Social and professional validation of definitions of “normality” – what dimensions should be included? By whom and how? Cultural and gender role variations? Schizophrenia is a heterogeneous, dynamic, stress-related, neurobiological disorder with countless brain-behavior-environment interactions that influence phases of relapse, stabilization, stable, recovery and refractory. - On what basis can a suitable study population be selected? - Recruitment into research may yield patients with more refractory symptoms and greater disability. - Pitfall of using unrealistically high standards for defining recovery. METHODOLOGICAL METHODOLOGICAL DILEMMAS DILEMMAS IN ’d) IN THE THE DEFINITION DEFINITION OF OF RECOVERY RECOVERY (cont (cont’d) • • • Remission vs. functional recovery or both? Outcome is a research artifact; longitudinal follow through studies are essential with frequent assessments to capture periodic variations in clinical, social and experiential status. Does recovery require that the person regain his/ her pre-morbid level of functioning? Since individuals have varying levels of premorbid functioning, should recovery be evaluated by having each person serve as his/ her own control? FACTORS THAT AFFECT SOCIAL and VOCATIONAL FUNCTIONING Social Role Complexities Environment Stigma Supports – Social, Financial, Housing, Medical, Psychiatric Opportunities, Encouragement & Rewards for Role Functioning Social Stressors Personal Goals Desired Roles Psychiatric Symptoms, Motivation to Perform Role SOCIAL and VOCATIONAL FUNCTIONING In Vivo Practice Expertise in Performing Role Disease Management Realistic Goals Individual Sequence & Timing of Behavioral Requirements Stressors Expectancies and Social Norms Contextual Factors and Difficulties Motivational Enhancement Medication Effects Cognitive Impairments Number & Mix of Tasks Quality of Instruction Rehabilitation Services Family & Social Skills Training Role Skills Quality of Curriculum Case Management Supported Employment Supportive Services Supported Education Supported Housing FACTORS THAT AFFECT SOCIAL and VOCATIONAL FUNCTIONING SOCIAL and VOCATIONAL FUNCTIONING Personal Goals Desired Roles Psychiatric Symptoms, Motivation to Perform Role Motivational Enhancement In Vivo Practice Medication Effects Cognitive Impairments Expertise in Performing Role Disease Management Realistic Goals Individual Quality of Instruction Rehabilitation Services Family & Social Skills Training Role Skills Quality of Curriculum Case Management Supported Employment Supportive Services Supported Education Supported Housing FACTORS THAT AFFECT SOCIAL and VOCATIONAL FUNCTIONING Environment Stigma Opportunities, Encouragement & Rewards for Role Functioning Supports – Social, Financial, Housing, Medical, Psychiatric Social Stressors SOCIAL and VOCATIONAL FUNCTIONING FACTORS THAT AFFECT SOCIAL and VOCATIONAL FUNCTIONING Social Role Complexities Number and Mix of Tasks Sequence and Timing of Behavioral Requirements Stressors Expectancies and Social Norms Contextual Factors and Difficulties SOCIAL and VOCATIONAL FUNCTIONING WHAT ARE THE PREDICTORS OF RECOVERY FOR HYPOTHESIS TESTING? Theory-driven personal strengths, positive prognostic factors, evidence-based practices and practice-based evidence may be predictors of recovery as drawn from the vulnerability-stress-protective factors that influence course and outcome of schizophrenia. VULNERABILITY-STRESS-PROTECTIVE FACTORS in RECOVERY Socioenvironmental Stressors Psychobiological Vulnerability PROTECTIVE FACTORS Psychotropic Medications Cognitive Remediation Disease Management Continuity of Services Skill Building Family Support & Problem Solving Supported & Transitional Employment Supported & Transitional Housing Assertive Community Treatment RECOVERY RECOVERY STABLE STABLE RECURRENT RECURRENT RELAPSES RELAPSES REFRACTORY REFRACTORY CLINICAL CLINICAL PROGRESS PROGRESS & & OUTCOMES OUTCOMES Symptoms & Relapse Cognitive Impairments Social Functioning Quality of Life WHAT are the CANDIDATES for PREDICTORS of RECOVERY ? Most Predictive Factors are Malleable through Treatment 1. 2. 3. 4. 5. 6. Supportive family or caregivers Absence of substance abuse Shorter duration of untreated psychosis Good initial response to neuroleptics Adherence to treatment Supportive therapy with a collaborative therapeutic alliance 7. Good neurocognitive functioning 8. Absence of the deficit syndrome 9. Good premorbid history 10. Access to comprehensive, coordinated and continuous treatment NORMAL NEUROCOGNITION is ASSOCIATED WITH RECOVERY Recovered Non-Recovered Normal Control 35 30 50 4 45 3.5 40 25 35 3 30 2.5 25 2 15 20 1.5 10 15 20 10 5 0 Visuo-Perceptual 1 5 0.5 0 0 Verbal Working Memory Executive Functioning Kopelowicz et al., 2005 NORMAL NEUROCOGNITION is ASSOCIATED WITH RECOVERY Recovered Non-Recovered Normal Control 60 25 50 20 40 15 30 10 20 5 10 0 0 Verbal Fluency Verbal Learning Kopelowicz et al., 2005 ENDURING TRAIT-LIKE NEUROCOGNITIVE DEFICIT 52 Recovered Non-Recovered Normal Control 51 50 49 48 47 46 45 Early Visual Processing Kopelowicz et al., 2005 PATHWAY PATHWAY to to RECOVERY RECOVERY 1. 2. 3. 4. Care is based on continuous, effective, healing partnerships and relationships based on dignity and respect. The mental healthcare system should provide flexible access and be responsive at all times. Individualized care is based on the unique needs and values including cultural sensitivity of the person served and family. The person and family served are provided meaningful choices, are fully informed of treatment options and understand that they are the source of control in their treatment. Decision-making is guided by the values, preferences, needs and desires of the person as well as current best evidence. Access 5. 6. 7. 8. Engagement Assessment Collaborative Decisionmaking on Goals & Services Personalized Planning for Treatment & Supports Implementation and Evaluation of Services & Supports Strengthening Self-reliance & Community Integration The mental health system plans for individual, family and community needs. There is a continuous effort to provide effective care and link treatment with ongoing assessment. There should be cooperation across systems and among mental health providers to ensure the appropriate and timely exchange of information and coordination of effective care. Correcting current disparities in the mental health system will assure administrative mandates and problem-solving, timely access, availability of evidence-based practices and quality of care. WHAT is EMPOWERMENT ? SOCIAL & INDEPENDENT LIVING SKILLS for SUCCESSFUL LIVING SELF-EFFICACY & SELF-ACCEPTANCE CONTENTMENT & HOPEFULNESS Functional behavior, self-confidence and emotional state are reciprocally reinforcing but the most effective portal of intervention is through behavior change. PERSONAL EFFECTIVENESS for SUCCESSFUL LIVING THE PATHWAY of PERSONAL EFFECTIVENESS to SUCCESSFUL LIVING Identify your personal GOAL….. How do you want your life to be different and better than now? Select a situation involving........ another person that will be a SMALL STEP toward reaching your personal goal. Choose WHAT you want to attain, WITH WHOM you need to communicate, WHERE and WHEN you will be trying to take this step. Watch a DEMONSTRATION....... Learn by WATCHING the skills of the situation with another being used in the role-play. person taking your role. PERSONAL EFFECTIVENESS for SUCCESSFUL LIVING THE PATHWAY of PERSONAL EFFECTIVENESS to SUCCESSFUL LIVING (cont’d) Practice the skills for………........ Learn by DOING the skills in Achieving your needs in a role- behavioral rehearsal with coaching play, using good VERBAL & and positive feedback. NONVERBAL COMMUNICATION. Give and get POSITIVE……........ Positive REINFORCEMENT FEEDBACK for what you have strengthens your skills and knowdone effectively. how. Complete a HOMEWORK…........ Using your PERSONAL assignment that enables you to EFFECTIVENESS to make your life use your skills in everyday life. more successful and satisfying is where the rubber hits the road. FROM DISABILITY TO RECOVERY PERSONAL GOAL ATTAINMENT THROUGH GROUP SOCIAL SKILLS TRAINING Stepwise Goal Attainment Introduces self to store manager Asks openopenended questions in art class Volunteers at a preschool Introduces self to new group member Gives positive feedback to others Participates in Basic Conversation Skills Module Participates in Role-Play Able to remain 50% of Time in Group for Entire Session 1/00 Participates in Friendship & Intimacy Module Calls for info on tennis lessons 3/00 6/00 9/00 7/01 10/01 10/02 Steadily Dating for 8 Months Posts Profile on Computer Dating Service Has dinner with tennis partner Becomes Engaged Has practice date Has conversation with partner at concert Solves who pays for date Speed dating conversations 4/03 6/03 10/03 7/04 12/04 4/05 11/05 1/06 DATE EMPOWERMENT THROUGH TRAINING in PERSONAL EFFECTIVENESS • • • • • • • • Making choices and decisions Becoming involved in treatment Active and informed participation in services Knowing what it takes Gaining self-esteem Achieving mastery and confidence Success with small steps Participating in society • Taking control of one’s life = Setting goals = Motivational enhancement = Role playing with coaching = Social modeling by peers = Positive reinforcement = Repetition = Shaping = Applying skills in the real world = Expanding skills and problem-solving EMPOWERMENT is PERSONAL EFFECTIVENESS for SUCCESSFUL and SATISFYING LIVING • Disease self-management: informed use of medication, symptom management, relapse prevention, coping with stressors, substance abuse management, active and collaborative partnership with mental health team • • • Independence in money and time management • Developing satisfying relationships with family and friends Achieving personal identity through meaningful work, school or volunteering in normative community locales Personal responsibility through advocacy, education and stigma busting WARNING WARNING SIGNS SIGNS RATING RATING SHEET SHEET ““People People on ” onthe thestreet street seem seemto tobe belooking lookingat at me mewith withdislike. dislike.” Severe Moderate Mild Absent SKILLS TRAINING MUST START with ASSESSMENT CASIG Personal goals & roles Individually elicited in all functional areas of living Quality of life Unacceptable community behaviors 10 behaviors such as suicidality, drug and alcohol abuse, verbal or physical assault, stealing, and sexual abuse Satisfaction with 11 areas such as finances, friends, leisure/ recreation, family, safety, residence and overall Medication practices Functional living skills Symptoms 10 areas including food preparation, work, leisure, friends, personal self-care, health and mental health attendance and money management Adherence, side effects, attitudes and beliefs, knowledge of benefits, self-administration Cognitive functioning Quality of treatment Memory, decisions, problem-solving, initiative and concentration 6 symptoms including delusions, hallucinations, thought disorder, mania, anxiety and depression Courtesy, accessibility, information, warmth and empathy Spiritual & religious Patient rights Beliefs, support, hope and selfacceptance Informed consent, confidentiality, involvement in setting goals and deciding on treatment What are my goals? What What functioning functioning will will be be required required of of me me to to achieve achieve my my goals? goals? What What areas areas of of functioning functioning do do II already already possess? possess? What What skills skills and and supports supports do do II already already have have to to meet meet the the requirements requirements of of this this goal? goal? What What skills skills and and supports supports do do II need need to to learn learn and and acquire? acquire? How How will will II be be able able to to accomplish accomplish this? this? Questions Yield Answers that Guide the Development of the Treatment Plan Information from CASIG Who Who will will assist assist me me in in obtaining obtaining and and coordinating coordinating services, services, ensure ensure that that they they are are provided provided and and have have the the desired desired effects? effects? Social Social supports supports and and services services available available for for remediating remediating deficits? deficits? Is Is skills skills training training available available for for remediating remediating deficits deficits or or do do we we have have to to advocate advocate for for it? it? RECOVERY RECOVERY IS IS THE THE VISION VISION REHABILITATION REHABILITATION IS IS THE THE MISSION MISSION AS WITH RECOVERY FROM ANY DISEASE, TREATMENT AND REHABILITATION EVIDENCE-BASED SERVICES YIELD OPTIMAL OUTCOMES WHEN THEY ARE PRACTICE-BASED BY BEING INDIVIDUALIZED AND PROVIDED: • • • • • • • • • • Competently Collaboratively with patients and families Consistently over time In coordination with other treatments In the comprehensive array of treatments Connected to the phase of the person’s illness, behavioral and functional strengths and personally relevant goals Continuously, flexibly and indefinitely over time Cooperatively with community resources and agencies Compassionately and with respect for the consumer and With commitment by clinicians FROM DISABILITY to RECOVERY PHASE of DISORDER DISABILITY Acute Stabilizing Stable Recovery Refractory TREATMENT & REHABILITATION Comprehensive Continuous Coordinated Consistent Competent Collaborative Consumer-Oriented Coherent Commitment Compassionate RECOVERING ATTRIBUTES Hope Dignity Empowerment Self-value Resilience Self-help Self-Responsibility RECOVERY PREDICTORS & CORRELATES of RECOVERY Supportive family Mutually respectful therapeutic alliance Good premorbid social competence No substance abuse Good initial response to antipsychotics Adherence to treatment No primary negative symptoms Early identification & intervention for psychosis Normal neurocognition “It is much more important to know what sort of patient has a disease than what sort of disease a patient has.” Sir William Osler Professor of Medicine Johns Hopkins School of Medicine Oxford University School of Medicine 1920 PROMOTING RECOVERY with PERSONALLY RELEVANT GOALS SUPPORTED by EVIDENCEBASED SERVICES and REALISTIC OPTIMISM for EACH PATIENT REACHING OPTIMUM NORMALITY in THEIR LIVES “Philosophy is right in saying that life must be understood backward, but one must not forget that life must be lived forward.” - Soren Kierkegaard RECOVERY FROM DISABIITY Manual of Psychiatric Rehabilitation by Robert Paul Liberman, M.D. Soon to be published textbook Flyer available on back table Contents: Overcoming Disability, Reaching Recovery Principles of Psychiatric Rehabilitation Disease Management Functional Assessment Training Social and Independent Living Skills Involving Families in Services for Recovery Vocational Rehabilitation: Working for Recovery Vehicles for Delivering Services Special Services for Special People New Developments in Psychiatric Rehabilitation
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