Transcript recovery: what helps and what hinders?

MENTAL HEALTH RECOVERY:
WHAT HELPS AND WHAT HINDERS?
A National Research Project for
the Development of Recovery
Facilitating System Performance
Indicators.
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.
Working Definition of Recovery:

An ongoing dynamic interactional process between a
person’s 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 day’s 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 .
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.
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.
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
Findings:
 While recovery is a deeply personal
journey, there are many
commonalities in people’s
experiences and opinions.
 Recovery is facilitated or impeded
through the dynamic interplay of
many forces that are complex,
synergistic and linked.
Cross-Site Themes

Basic Material
Resources

Social Relationships

Self/Whole Person

Meaningful Activities

Hope, Sense of
Meaning & Purpose

Peer Support

Choice

Formal Services

Independence

Formal Service Staff
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).
Findings: The Universal
Often times it’s not about
pathology, it’s just about life.
(AZ 739)
The American Dream
 Basic Material Resources
•
•
•
•
•
Livable Income
Safe and Decent Housing
Health Care
Transportation
Communication Technology
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
Findings: The Personal
Live your life, not your diagnoses.
(CO 1309)
Self Agency
 Personal Responsibility
 Beliefs and Attitudes
 Self Reliance/Personal Resourcefulness
 Self Care
 Self Determination
 Self Advocacy
The Whole Person
 Hope
 Sense of Meaning and Purpose
 Spirituality
 Goals
 Engaging in the Change Process
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 can’t
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 there’s something that’s
really empowering in having at least that
knowledge. (OK 856-860)
Empowerment

Choice
•
•
•
•
•
•

Information on
Access to
Range in
Meaningful and Useful
Support in Making
Risk Taking
Independence
• Interdependence

Hope
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)
Tribal Strengths
 Peer Support
 Peer Education
 Peer Outreach
 Alternative Services
 Peer Role Models
 Peer Mentors
 Peer Advocates
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)
Formal Services

Culture and Organization
• Consumer Voice/ Driven/ Outcomes

Structure
• Funding
Information and Education
 Access

• Choice

Quality
• Range

Continuity
Findings: Partnership
The right staff with patience,
time and understanding can
help you move along toward
recovery. (NYC, 239)
System Staff
 Beliefs and Attitudes
 Respect
 Partnership
 Training and Knowledge
 Authenticity
 Availability
Moving from a Chronicity to a
Recovery Paradigm

Diagnostic groupings; “Case”;
Lumped and labeled as
“chronics”/ SPMI/ CMI

Unique identity; Person
orientated; Person First
Language

Pessimistic Prognosis; “Broken
Brain”

Hope and Realistic Optimism

Pathology/ Deficits;
Vulnerabilities Emphasized;
Problem-Orientation

Strengths/ Hardiness/
Resilience; Self-Righting
Capacities Emphasized

Fragmented Biological/
Psychosocial/ Oppression
Models
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Integrated Bio-Psycho-SocialSpiritual Holism; Life-context

Professional Assessment of
“Best Interests” and Needs/
Paternalism

Self-Definition of Needs and
Goals/ Voice/ ConsumerDriven/ Self-determination
Paradigm Shift

Professional Control/ Expert
Services

Self-Help/ Experiential
Wisdom/ Mutuality/ Self-Care/
Partnering with Professionals

Power Over/ Coercion/ Force/
Compliance

Empowerment/ Choice

Reliance on Formal Supports or
“Independence”

Emphasis on Natural Supports;
Interdependency

Social Segregation; Formal
Program Settings; DeviancyAmplifying Artificial Settings
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Maintenance/ Stabilization;
Risk-Avoidance

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Integration; “Real Life” Niches;
Natural Community Resources/
In Vivo Services and Supports
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Active Growth/ New Skills &
Knowledge/ Dignity of Risk
Paradigm Shift

Patient/ Client/ Consumer
Role
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Normative Roles/ Natural
Life Rhythms
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Resource Limitations/
Poverty
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Asset building/
Opportunities
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Helplessness/ Passivity/
Adaptive Dependency
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Self-Efficacy/ SelfSufficiency/Self-Reliance
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.
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
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

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)

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

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 Chronbach’s 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
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Member Check Priorities:
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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
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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
Member Check Priorities:
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Hindering formal system
qualities 23
Access to services
problems 22
Benefits/ entitlements 22
Peer recovery models 22
Spirituality 19
Self reliance/ resourcefulness/responsibility 18
Disabling conditions
(hindering) 15
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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
Demystifying Recovery

In all my years experience with psychiatric professionals,
the one thing that’s 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).
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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).
Concluding Quote
We can’t stop here but there’s
hope in watching the system
evolve and the changes that are
taking place (OK 2350-2352).