marianne farkas professor center for psychiatric rehabilitation
TRANSCRIPT
Marianne Farkas
Professor
Center for Psychiatric Rehabilitation
Boston University
Vlaams Geestelijk Gezondheidscongres
18 September 2012
Antwerpen Belgium
Historical Context…..
What was the Historical context?
• Diagnosis implied life long deterioration
• Diagnosis implied only role available was that of service recipient/ client/ patient
• Categories of service limited
• (i.e. hospital vs. supervised housing; day programs vs. sheltered work)
Farkas 2000
Current thinking… Diagnosis does not predict success ( eg Razzano et al., 2005)
Prognosis may be interaction of
impairment process, local environment/treatment process, active agency of person ( Hopper et al., 2007)
Medication alone does not promote
community functioning and success (Swartz, Perkins, Stroup 2007)
Farkas 2011
Current thinking…
People with serious mental illnesses want and have many roles- wife, homemaker, worker, student ( Ellison et al., 2008; Rogers et al, 1991)
Service categories have to include a full
range of options in the “real world” (Farkas & Anthony, 1989; Farkas 2006)
Farkas 2011
Reducing mental illnesses does not mean increasing mental health
Determinants of mental well being (produced socially) not same as determinants of mental illnesses (produced biologically/ environmentally etc) (Huppert, 2008; Primm et al, 2010; WHO 2009)
Findings About Health Promotion Added to Imperative to change our paradigm…
Mental illnesses are both a direct cause of mortality and morbidity and significant risk factor for poorer economic, health and social outcomes ( WHO 2005; 2006)
Wellbeing/mental health also influences better physical health, improved recovery, higher educational attainment, greater productivity, better relationships, social cohesion, improved QOL ( WHO 2004; Barry &
Jenkins, 2007; Primm et al, 2010)
Why did the field begin “adopting” Recovery as a legitimate vision ?
Known in the literature for at least 40 years (eg. Bleuler, 1972, Ciompi et al., 1976; Harding et al.,1987)
First person accounts - much longer (eg. Deegan 1990; 1993; Ridgway, 2001; Spaniol et al, 1999)
Research examining concepts of recovery, its process and its outcomes (eg. Davidson, Harding et al, 2005; Farkas 2007; Harding & Zhaniser, 1994; Liberman et al., 2002; Ridgway 2001; Silverstein & Bellack 2008
Farkas, 2011
Recovery ideas in current literature of different countries
UK, USA, Canada, Australia
Hong Kong
Systematic review across countries
Claiming, reclaiming meaningful life; Home, health community, purpose
Farkas 2007; SAMHSA 2010
復元(fu yuan) meaning regaining vitality, life force
Tse et al., 2012
Processes related to ideas of connectedness ,identity, meaning , empowerment
Slade et al, 2012
Most used definition of Recovery
Development of new meaning and purpose as one grows beyond the catastrophic effects of a psychiatric history and experiences of mental illness. ( Adapted from Anthony 1993)
Or in summary- claiming or reclaiming a meaningful life
( Farkas, 2007)
What is Recovery
A vision/ overall goal for services and systems
Transformation of the paradigm with which services are delivered
Farkas,2007, Anthony et al., 2002
What is Recovery?
A process, an individual experience,
variety of multidimensional outcomes
Recovery is the process of reclaiming a meaningful life
E.g. (re/)Gaining a valued role; reducing symptoms; increased physical health, sense of well being, increased interpersonal connections etc.
Farkas, 2007; Anthony, Cohen, Farkas et
al, 2002
I spent 20 years in therapy and life experience trying to recover from a psychiatric disability. I began my formal recovery at the age of 15 in my first of a long line of hospitalizations at an area State Hospital and later in both private and public mental hospitals.
Jean
What does it mean at a personal level?
Jean’s Story– What does Recovery mean ?
• I was afraid that my past history of trauma and hospitalizations had almost sealed my fate.
• School was my only area of competency
• A professor encouraged me, asked me to tell my recovery story… and then to represent people in recovery at a conference… slowly over time I realized I had something to offer
Jean’s story I developed a career that helped me
move from a shame based existence to now-making $45, 000.00 a year-at the precipice of my new life.
When my feelings and thoughts are being challenged by dissociation and flash backs, at 35, work is my lifeline and my support.
Jean’s definition of her recovery
Work, making real friends, literally having a place to live all these have been the great blessings in my life that for me, show me that I have indeed recovered from mental illness-- from internal stigma and the self-fulfilling prophecy of assuming that I had nothing to offer
Recovery Outcomes and Health Promotion: Compare these with measures of positive mental health
• Gaining/regaining a valued role, i.e. student, worker, family member, tenant
• Experiencing increased success and satisfaction in these roles
• Reducing/controlling symptoms
• Increased sense of self-efficacy
• Increased feelings of well being
• Increased number or quality of interpersonal connections
• Increased measures of physical health
• Increased sense of self-esteem (Farkas & Gagne, 2001)
• resilience,
• self esteem,
• optimism,
• life satisfaction,
• hopefulness,
• meaning in life,
• social
integration ( eg
Parkinson, 2008)
What do we know from Research? : Major Themes Recovery is possible and has been known
for 40 years ( e.g. Buber, 1972; Harding et al., 1994; Hooper et al, 2001
Recovery is a complex, non-linear and multi-dimensional process and can be described
Recovery is a highly individualized process
with multiple explanatory models used
Recovery can occur with or without professional intervention
Adapted, Anthony, Cohen ,Farkas ,Gagne
2002
So is Recovery different from just “good practice” ?
This question often is a global way of expressing concerns about the emergence of this concept and the challenges it can pose.
Farkas 2012
How is it different from good practice ? … Some major differences are…
“Good practice” can be good rehabilitation, treatment, case management etc.
These are services
Recovery, on the other hand, is the person’s experience of a journey which can be promoted or facilitated by services….or not
Farkas 2012
So how is it different from good practice
Interventions for mental illnesses often focus on controlling/ reducing/ fixing a problem or barrier through the role of “person in authority/ person in charge of” to reduce suffering and hopefully improve a person’s life
Interventions that are recovery oriented, look to promote person’s own long term vision of a meaningful life through the roles of teacher, coach, consultant to the expert in the recovery process—the person him/herself Farkas 2012
What are some of the concerns about recovery as a concept.. Recovery is an irresponsible fad
Recovery is old news
Recovery happens for very few people
Recovery means the person is cured
Recovery can be implemented only through introduction of new services
(Summarized by Davidson et al., 2006)
As an aside…What is the major barrier to developing a recovery vision for systems?
Many people think they are thinking when they are merely rearranging their prejudices..
William James
1. Recovery is an irresponsible fad: Is it a Fad?
Recovery has been present in the literature for over 40 years
People in recovery have written first person accounts detailing their recovery
It is now the official policy of several countries
Farkas 2012
2. Recovery is old news ..so… how come the stakeholders don’t know it ?
If we are already “doing it” why is there consensus that mental health care is in serious need of reform, is not producing effective outcomes and that recovery should be the overall objective of the system ? (e.g.
in the U.S.--IOM, 2006; Surgeon General report, 1999; New Freedom Commission, 2003; MH Reform Commission in NZ., reform in Scotland, in England etc)
Farkas 2012
2. Recovery is old news ....so how come the stakeholders don’t know it ? In many countries, people with serious
mental illness are still not well represented in the world of work; are not in post secondary education representational to their numbers in the population; are over represented in the criminal justice population…
If ½ to 2/3 of those with lived experience are not achieving a meaningful life—how can recovery be “old news”?
Farkas 2012
3. Is recovery only for the very few? Study Sample Size Length Outcomes
Bleuler,1972 206 23 53-68%
Huber et al.,
1972
502 22 57%
Ciompi &
Muller, 1976
289 37 53%
Tusuang et
al.,1979
186 35 46%
Harding et al,
1987
269 32 62- 68%
Ogawa et al,
1987
140 22.5 57%
DeSisto et al,
1995
269 35 49%
Harrison et al. 200-500 22-37 58%
Harding et al., 1994, Harrison et al.,
2001)
4. Does it mean person is cured? Remember these outcomes identified by people themselves ?
Gaining/regaining a valued role, i.e. student, worker, family member, tenant
Experiencing increased success and satisfaction in these roles
Reducing/controlling symptoms Increased sense of self-efficacy Increased feelings of well being Increased number or quality of
interpersonal connections Increased measures of physical health Increased sense of self-esteem
Farkas & Gagne, 2001; Farkas 2007
Farkas, 2008
Do what we
do now
Peers,
EBP’s
Rec Ed.
Organizational
Recovery Vision?
Recovery
Oriented
Service = +
5. Does recovery require the
introduction of new services ?
5. Recovery is introduction of new services…Change vs Transformation
We can change a system by promoting centralization, decentralization, coordination, adding services, selecting some services to improve their effectiveness
We transform a system by changing the paradigm with which services are conducted
Farkas, 2011
Why are services coordinated around a recovery vision so important ? …….
“Life lived within the confines of the human service …[sic]…….is a life in which the freedom to become & make your own future is diminished…..It is nearly impossible to make your own future when you are not part of the …….[sic] fabric of the culture you live in…”
(Patricia Deegan, Phd., World Congress Rehab
International: Oslo, Norway – June, 2004)
Example of
Some
Services and
[Outcomes]
Recovery as overall mission
Health
Thoughts,
Feelings, and
Behavior
Activity
Role
Performance
Participation
Opportunities
(WHO, ICDF)
Treatment
[Symptom
Relief]
X
Crisis
Intervention
[Safety]
X
Case
Management
[Access]
X X X
Rehabilitation
[Role
Functioning]
X X
(Adapted from Anthony,
Cohen, Farkas et al., 2002)
Recovery should be the integrative mission of all services
Will Recovery replace rehabilitation?.. What is rehabilitation all about in a recovery era ? Rehabilitation is a systematic approach that
contributes to overall recovery by :
Developing relationships where the individual is the expert regarding his or her own recovery
Organizing interventions to ensure that people have a good chance to reach one aspect of their hopes and dreams—i.e. valued roles-- the cornerstone of recovery
Farkas 2012
Promoting recovery requires a transformation Creating services/systems that: a support a personal journey with an array of
commonly identified outcomes, reflecting the (re)claiming of a meaningful life
Facilitate this journey by basing service on a
set of values expressed in the infrastructure and daily practice of services/system
Facilitate this journey using a set of competencies within a partnership that alter the way in which any intervention is delivered
Farkas, 2011
Farkas, Gagne, Anthony,
Chamberlin 2005
Transformation: Aligning Values to
Promote Recovery Person
Choice
Partnership
Hope
not diseases, cases
not coercion
not compliance
not helplessness
Transformation: Aligning competencies to promote recovery
The skills of inspiring hope
The skills of developing and maintaining partnership
The skills of promoting self determined choices
The skills of educating/teaching
Farkas, 2011
Transformation: Aligning the system to promote recovery
Macro issues Examples
Administrative
Population wide interventions on health/mental health
policies, financing, credentialing, system evaluation etc) match recovery mission
Strengthen community, community mental health/well being Farkas, 2011
More than “old wine in new bottles” ?-Point is rather--make whatever wine it is using these fundamentals:
“Nothing about us without us”- design, deliver, evaluate services with people in recovery
Strengthening well being of communities provides resources for people to work on their own well being and recovery
Investing in people rather than investing in buildings ( eg teaching; providing flexible support; respite ; recovery awards; developing and supporting peers etc)
Researching/Evaluating progress using qualitative/quantitative methods to measure recovery outcomes (discussed earlier) to create “recovery report cards”
Farkas 2012
Nothing will ever be attempted, if all possible objections must be first overcome. ~Samuel Johnson, Rasselas, 1759