MENTAL HEALTH RECOVERY: WHAT HELPS AND WHAT HINDERS?

1
MENTAL HEALTH RECOVERYWHAT HELPS AND WHAT
HINDERS?

• A National Research Project for the Development
  of Recovery Facilitating System Performance
  Indicators.

2
The Notion of Recovery

• Recovery or Procovery is being coined as a way of
  acknowledging that people can successfully
  contend with severe mental illness and still
  create positive lives.
• Recovery is grounded in resiliency - existing key
  internal processes that enable an individual to
  surmount crises and persistent stresses (Walsh,
  1996) the innate strength, self-righting
  capacity and hardiness of that individual.

3
Working Definition of Recovery

• An ongoing dynamic interactional process between
  a persons strengths, vulnerabilities, resources
  and the environment that involves a personal
  journey of actively self-managing psychiatric
  disorder while reclaiming, gaining and
  maintaining a positive sense of self, roles and
  life beyond the mental health system (in spite of
  the challenge of psychiatric disability).
• It involves learning to approach each days
  challenges, to overcome disabilities, to live
  independently and to contribute to society and is
  supported by a foundation based on on hope,
  belief, personal power, respect, connections and
  self-determination .

4
Caveats

• Recovery does not mean an outcome of cure
  (Deegan, 1996 Walsh, 1999).
• Recovery occurs even though symptoms reoccur
  (Anthony, 1993). People still struggle with the
  episodic nature of their symptoms, grieve the
  losses they have sustained and struggle with the
  reoccurring multiple traumas they have
  experienced.
• The recovery process itself can trigger
  symptomatic responses as a person becomes more
  active on his or her own behalf and opens up to
  more vulnerabilities (Spaniol, Gagne Koehler,
  1999). Part of recovery is this process of risk
  taking.

5
Purposes

• To increase knowledge about what facilitates or
  hinders recovery from psychiatric disabilities,
• To devise a core set of indicators that measure
  elements of a recovery-facilitating environment,
  and
• To integrate the items into a multi-state report
  card of mental health system performance in
  order to generate comparable data across state
  and local mental health systems.

6
Overview of Project Phase One

• A qualitative research design to create grounded
  theory
• It incorporates a structured focus group approach
  with a purposive variability sample frame
• The data collected from each focus group
  undergoes structured content analysis identifying
  individual meaning units and emerging groupings
• A common set of critical concepts and
  interpretive themes is then developed for the
  pooled data set across all focus groups
• A member check is conducted to maintain rigor and
  assure credibility

7
Findings

• While recovery is a deeply personal journey,
  there are many commonalities in peoples
  experiences and opinions.
• Recovery is facilitated or impeded through the
  dynamic interplay of many forces that are
  complex, synergistic and linked.

8
Cross-Site Themes

• Basic Material Resources
• Self/Whole Person
• Hope, Sense of Meaning Purpose
• Choice
• Independence

• Social Relationships
• Meaningful Activities
• Peer Support
• Formal Services
• Formal Service Staff

9
Recovery is a product of dynamic interaction among

• characteristics of the individual (the self/ the
  whole person, hope, sense of meaning purpose),
• characteristics of the environment (basic
  material resources, social relationships,
  meaningful activities, peer support, formal
  services, formal service staff), and
• the characteristics of the exchange (hope,
  choice/empowerment, independence/interdependence).
  

10
Findings The Universal

• Often times its not about pathology, its
  just about life. (AZ 739)

11
The American Dream

• Basic Material Resources
• Livable Income
• Safe and Decent Housing
• Health Care
• Transportation
• Communication Technology

12
Citizenship

• Social Relationships/ Connectiveness
• Families
• Friends
• Intimacy
• Meaningful Activities
• Educational Advancement
• Real Jobs and Meaningful Careers
• Volunteer Opportunities
• Community and Organizational Advocacy
• Role in Policy and Program Decision Making

13
Findings The Personal

• Live your life, not your diagnoses. (CO 1309)

14
Self Agency

• Personal Responsibility
• Beliefs and Attitudes
• Self Reliance/Personal Resourcefulness
• Self Care
• Self Determination
• Self Advocacy

15
The Whole Person

• Hope
• Sense of Meaning and Purpose
• Spirituality
• Goals
• Engaging in the Change Process

16
Findings The Activation

• It would be nice if a mental health center
  would say, These are the services that we should
  be able to provide to you. We cant because of
  funding. But if we could, they might actually be
  more helpful to your recovery process than what
  we do have to offer. Because theres something
  thats really empowering in having at least that
  knowledge. (OK 856-860)

17
Empowerment

• Choice
• Information on
• Access to
• Range in
• Meaningful and Useful
• Support in Making
• Risk Taking
• Independence
• Interdependence
• Hope

18
Findings Referent Power

• Support from others is very important,
  especially from others who are in the same
  predicament that you are. They know what you go
  through. They've been through it, and they
  survived, which could help you survive. (TX
  1258-61)

19
Tribal Strengths

• Peer Support
• Peer Education
• Peer Outreach
• Alternative Services
• Peer Role Models
• Peer Mentors
• Peer Advocates

20
Findings The System

• The system should assume that every person
  that walks through the door has the potential for
  recovery rather than the opposite just
  automatically assume that recovery is possible.
  (SC 1286)

21
Formal Services

• Culture and Organization
• Consumer Voice/ Driven/ Outcomes
• Structure
• Funding
• Information and Education
• Access
• Choice
• Quality
• Range
• Continuity

22
Findings Partnership

• The right staff with patience, time and
  understanding can help you move along toward
  recovery. (NYC, 239)

23
System Staff

• Beliefs and Attitudes
• Respect
• Partnership
• Training and Knowledge
• Authenticity
• Availability

24
Moving from a Chronicity to a Recovery Paradigm

• Diagnostic groupings Case Lumped and labeled
  as chronics/ SPMI/ CMI
• Pessimistic Prognosis Broken Brain
• Pathology/ Deficits Vulnerabilities Emphasized
  Problem-Orientation
• Fragmented Biological/ Psychosocial/ Oppression
  Models
• Professional Assessment of Best Interests and
  Needs/ Paternalism 

• Unique identity Person orientated Person First
  Language
• Hope and Realistic Optimism
• Strengths/ Hardiness/ Resilience Self-Righting
  Capacities Emphasized
• Integrated Bio-Psycho-Social-Spiritual Holism
  Life-context
• Self-Definition of Needs and Goals/ Voice/
  Consumer-Driven/ Self-determination 

25
Paradigm Shift

• Professional Control/ Expert Services
•  
• Power Over/ Coercion/ Force/ Compliance
•  
• Reliance on Formal Supports or Independence
• Social Segregation Formal Program Settings
  Deviancy-Amplifying Artificial Settings
•  
• Maintenance/ Stabilization Risk-Avoidance

• Self-Help/ Experiential Wisdom/ Mutuality/
  Self-Care/ Partnering with Professionals
•  
• Empowerment/ Choice
• Emphasis on Natural Supports
• Interdependency
•  
• Integration Real Life Niches Natural
  Community Resources/ In Vivo Services and
  Supports
•  
• Active Growth/ New Skills Knowledge/ Dignity of
  Risk

26
Paradigm Shift

• Patient/ Client/ Consumer Role
•  
• Resource Limitations/ Poverty
•  
• Helplessness/ Passivity/ Adaptive Dependency

• Normative Roles/ Natural Life Rhythms
•  
• Asset building/ Opportunities
•  
• Self-Efficacy/ Self-Sufficiency/Self-Reliance

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Overview of Project Phase Two

• The findings from Phase One are being
  operationalized into prototype performance
  indicator item sets that measure system-level
  variables that help or hinder consumers/
  survivors in their process of recovery.
• The resulting instrument will then be fine-tuned
  for pilot testing in participating states.

28
Context

• Steady movement toward evidence-based practice
  science matters
• Clinical need outstrips research experience
  matters
• Recognition that the body and brain are connected
  the body matters
• Recognition that the present is always
  determining the future dreams matter

29
Context

• Recognition of role of social support, social
  norms, social meaning and responsibility
  people, families, culture, communities matter
• Recognition of important role of meaning-making
  religion, spirituality, philosophy matter
• Recognition of important role of mind-body-spirit
  integration the whole matters
• Growth in understanding of multicausality, need
  for integrated conceptual framework, treatment,
  and systems approach complexity

30
Item Development

• Brainstorming multiple performance indicator
  statements as review each domain/theme and
  corresponding branching
• Editing and refining the indicator items
  brainstormed, a process of reaching consensus on
  wording of the indicators items, eliminating
  redundancies, etc.
• Checking the items against the codebook and
  findings to ensure comprehensiveness (sometimes
  resulting in additional generation of indicator
  items)

31
Item Development

• Reviewing current performance measurement efforts
  as a further means of refining, editing and
  developing a full range of indicators
• Selecting appropriate response scales (e.g.,
  frequency, agreement or valuation) and identify
  the source of response
• Conducting a think aloud session with a diverse
  group of consumer/survivors, working with the
  participants to refine each item in such as way
  that its meaning is clear while retaining
  fidelity to what is intended to be measured

32
Item Development

• Proto-testing the resulting self-report survey
  with 100 consumers/survivors, resulting in
  further refinements and elimination of redundant
  items (e.g., assessing Chronbachs alpha for
  internal consistency, etc.)
• Soliciting review and feedback with the SMHAs,
  project sponsors, and the MHSIP 2.0 Workgroup
  regarding such elements as significance,
  relevance, and implementation burden of the
  self-report survey indicator set and of the
  individual administrative-level performance
  indicators

33
Member Check Priorities

• Peer support groups peer run services 60
• Choice in treatment/ services 44
• Meaningful employment/ work 42
• Liveable income 39
• Helpful staff attitudes/ qualities 32
• Hindering staff attitudes/ qualities 31

• Partnering/ collaborative relationships w/
  providers 30
• Helpful system culture and orientation 27
• Affordable housing 26
• Consumer driven service system 25
• Helpful self internal states/attitudes 25
• Hindering system culture and orientation 24

34
Member Check Priorities

• Hindering formal system qualities 23
• Access to services problems 22
• Benefits/ entitlements 22
• Peer recovery models 22
• Spirituality 19
• Self reliance/ resource-fulness/responsibility
  18
• Disabling conditions (hindering) 15

• Education about disorder/ recovery 15
• Ex stigma/prejudice 14
• Having someone who believes in me 11
• Responsive roles staff 10
• Choice where live/ housing 10
• Medications 9
• Hindering staff-consumer relationship 9
• Educational activities 9

35
Demystifying Recovery

• In all my years experience with psychiatric
  professionals, the one thing thats been most
  heartening is when the professional acknowledges
  the common humanity, theirs and mine, ours
  together. (CO 2172)
• Recovery is not so much getting mainstreamed, but
  expanding the mainstream to incorporate the
  fringes (Deegan, 1996).
• The goal is not so much as that of becoming
  normal as to become more deeply, more fully human
  in whatever unique way one is meant to be
  (Deegan, 1996).

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Concluding Quote

• We cant stop here but theres hope in watching
  the system evolve and the changes that are taking
  place (OK 2350-2352).