MENTAL HEALTH MENTAL HEALTH RECOVERY:RECOVERY:WHAT HELPS AND WHAT HELPS AND WHAT HINDERS?WHAT HINDERS?

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

The Notion of RecoveryThe Notion of Recovery

Recovery or Procovery is being coined as Recovery or Procovery is being coined as a way of acknowledging that people can a way of acknowledging that people can successfully contend with severe mental successfully contend with severe mental illness and still create positive lives.illness and still create positive lives.

Recovery is grounded in resiliency - Recovery is grounded in resiliency - existing key internal processes that existing key internal processes that enable an individual to surmount crises enable an individual to surmount crises and persistent stresses (Walsh, 1996) – and persistent stresses (Walsh, 1996) – the innate strength, self-righting the innate strength, self-righting capacity and hardiness of that capacity and hardiness of that individual.individual.

Working Definition of Working Definition of Recovery:Recovery:

An ongoing dynamic interactional process An ongoing dynamic interactional process between a person’s strengths, vulnerabilities, between a person’s strengths, vulnerabilities, resources and the environment that involves a resources and the environment that involves a personal journey of actively self-managing personal journey of actively self-managing psychiatric disorder while reclaiming, gaining psychiatric disorder while reclaiming, gaining and maintaining a positive sense of self, roles and maintaining a positive sense of self, roles and life beyond the mental health system (in and life beyond the mental health system (in spite of the challenge of psychiatric disability).spite of the challenge of psychiatric disability).

It involves learning to approach each day’s It involves learning to approach each day’s challenges, to overcome disabilities, to live challenges, to overcome disabilities, to live independently and to contribute to society and independently and to contribute to society and is supported by a foundation based on is supported by a foundation based on on hope, on hope, belief, personal power, respect, connections and belief, personal power, respect, connections and self-determinationself-determination . .

Caveats:Caveats: Recovery does not mean an outcome of cure Recovery does not mean an outcome of cure

(Deegan, 1996; Walsh, 1999).(Deegan, 1996; Walsh, 1999). Recovery occurs even though symptoms reoccur Recovery occurs even though symptoms reoccur

(Anthony, 1993). People still struggle with the (Anthony, 1993). People still struggle with the episodic nature of their symptoms, grieve the episodic nature of their symptoms, grieve the losses they have sustained and struggle with the losses they have sustained and struggle with the reoccurring multiple traumas they have reoccurring multiple traumas they have experienced.experienced.

The recovery process itself can trigger The recovery process itself can trigger symptomatic responses as a person becomes symptomatic responses as a person becomes more active on his or her own behalf and opens more active on his or her own behalf and opens up to more vulnerabilities (Spaniol, Gagne & up to more vulnerabilities (Spaniol, Gagne & Koehler, 1999). Part of recovery is this process Koehler, 1999). Part of recovery is this process of risk taking.of risk taking.

PurposesPurposes

To increase knowledge about what To increase knowledge about what facilitates or hinders recovery from facilitates or hinders recovery from psychiatric disabilities,psychiatric disabilities,

To devise a core set of indicators that To devise a core set of indicators that measure elements of a recovery-measure elements of a recovery-facilitating environment, andfacilitating environment, and

To integrate the items into a multi-state To integrate the items into a multi-state “report card” of mental health system “report card” of mental health system performance in order to generate performance in order to generate comparable data across state and local comparable data across state and local mental health systems.mental health systems.

Overview of Project: Overview of Project: Phase OnePhase One

A qualitative research design to create grounded A qualitative research design to create grounded theorytheory

It incorporates a structured focus group approach It incorporates a structured focus group approach with a purposive variability sample framewith a purposive variability sample frame

The data collected from each focus group The data collected from each focus group undergoes structured content analysis identifying undergoes structured content analysis identifying individual meaning units and emerging groupingsindividual meaning units and emerging groupings

A common set of critical concepts and interpretive A common set of critical concepts and interpretive themes is then developed for the pooled data set themes is then developed for the pooled data set across all focus groupsacross all focus groups

A member check is conducted to maintain rigor and A member check is conducted to maintain rigor and assure credibilityassure credibility

Findings:Findings:

While recovery is a deeply While recovery is a deeply personal journey, there are personal journey, there are many commonalities in people’s many commonalities in people’s experiences and opinions.experiences and opinions.

Recovery is facilitated or Recovery is facilitated or impeded through the dynamic impeded through the dynamic interplay of many forces that interplay of many forces that are complex, synergistic and are complex, synergistic and linked.linked.

Cross-Site ThemesCross-Site Themes

Basic Material Basic Material ResourcesResources

Self/Whole PersonSelf/Whole Person

Hope, Sense of Hope, Sense of Meaning & Meaning & PurposePurpose

ChoiceChoice

IndependenceIndependence

Social RelationshipsSocial Relationships

Meaningful Meaningful ActivitiesActivities

Peer SupportPeer Support

Formal ServicesFormal Services

Formal Service StaffFormal Service Staff

Recovery is a product of Recovery is a product of dynamic interaction dynamic interaction amongamong

characteristics of the individual (the self/ characteristics of the individual (the self/ the whole person, hope, sense of the whole person, hope, sense of meaning & purpose),meaning & purpose),

characteristics of the environment (basic characteristics of the environment (basic material resources, social relationships, material resources, social relationships, meaningful activities, peer support, meaningful activities, peer support, formal services, formal service staff), andformal services, formal service staff), and

the characteristics of the exchange the characteristics of the exchange (hope, choice/empowerment, (hope, choice/empowerment, independence/interdependence).independence/interdependence).

Findings: The UniversalFindings: The Universal

Often times it’s not Often times it’s not about pathology, it’s about pathology, it’s just about life. (AZ just about life. (AZ 739)739)

The American DreamThe American Dream

Basic Material ResourcesBasic Material Resources•Livable IncomeLivable Income•Safe and Decent HousingSafe and Decent Housing•Health CareHealth Care•TransportationTransportation•Communication TechnologyCommunication Technology

CitizenshipCitizenship

Social Relationships/ Social Relationships/ ConnectivenessConnectiveness• FamiliesFamilies• FriendsFriends• IntimacyIntimacy

Meaningful ActivitiesMeaningful Activities• Educational AdvancementEducational Advancement• Real Jobs and Meaningful CareersReal Jobs and Meaningful Careers• Volunteer OpportunitiesVolunteer Opportunities• Community and Organizational AdvocacyCommunity and Organizational Advocacy• Role in Policy and Program Decision MakingRole in Policy and Program Decision Making

Findings: The PersonalFindings: The Personal

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

Self AgencySelf Agency

Personal ResponsibilityPersonal Responsibility Beliefs and AttitudesBeliefs and Attitudes Self Reliance/Personal Self Reliance/Personal

ResourcefulnessResourcefulness Self CareSelf Care Self DeterminationSelf Determination Self AdvocacySelf Advocacy

The Whole PersonThe Whole Person

HopeHope Sense of Meaning and PurposeSense of Meaning and Purpose SpiritualitySpirituality GoalsGoals Engaging in the Change Engaging in the Change

ProcessProcess

Findings:Findings: The Activation The Activation

It would be nice if a mental health It would be nice if a mental health center would say, “These are the center would say, “These are the services that we should be able to services that we should be able to provide to you. We can’t because of provide to you. We can’t because of funding. But if we could, they might funding. But if we could, they might actually be more helpful to your actually be more helpful to your recovery process than what we do recovery process than what we do have to offer.” Because there’s have to offer.” Because there’s something that’s really empowering something that’s really empowering in having at least that knowledge. in having at least that knowledge. (OK 856-860)(OK 856-860)

EmpowermentEmpowerment

ChoiceChoice• Information onInformation on• Access toAccess to• Range inRange in• Meaningful and UsefulMeaningful and Useful• Support in MakingSupport in Making• Risk TakingRisk Taking

IndependenceIndependence• InterdependenceInterdependence

HopeHope

Findings: Referent PowerFindings: Referent Power

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

Tribal StrengthsTribal Strengths

Peer SupportPeer Support Peer EducationPeer Education Peer OutreachPeer Outreach Alternative ServicesAlternative Services Peer Role ModelsPeer Role Models Peer MentorsPeer Mentors Peer AdvocatesPeer Advocates

Findings: The SystemFindings: The System

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

Formal ServicesFormal Services

Culture and OrganizationCulture and Organization• Consumer Voice/ Driven/ OutcomesConsumer Voice/ Driven/ Outcomes

StructureStructure• FundingFunding

Information and EducationInformation and Education AccessAccess

• ChoiceChoice QualityQuality

• RangeRange ContinuityContinuity

Findings: PartnershipFindings: Partnership

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

System StaffSystem Staff

Beliefs and AttitudesBeliefs and Attitudes RespectRespect PartnershipPartnership Training and KnowledgeTraining and Knowledge AuthenticityAuthenticity AvailabilityAvailability

Moving from a Chronicity Moving from a Chronicity to a Recovery Paradigmto a Recovery Paradigm

Diagnostic groupings; Diagnostic groupings; “Case”; Lumped and labeled “Case”; Lumped and labeled as “chronics”/ SPMI/ CMI as “chronics”/ SPMI/ CMI

Pessimistic Prognosis; Pessimistic Prognosis; “Broken Brain”“Broken Brain”

Pathology/ Deficits; Pathology/ Deficits; Vulnerabilities Emphasized; Vulnerabilities Emphasized; Problem-Orientation Problem-Orientation

Fragmented Biological/ Fragmented Biological/ Psychosocial/ Oppression Psychosocial/ Oppression ModelsModels

Professional Assessment of Professional Assessment of “Best Interests” and Needs/ “Best Interests” and Needs/ Paternalism Paternalism 

Unique identity; Person Unique identity; Person orientated; Person First orientated; Person First LanguageLanguage

Hope and Realistic Hope and Realistic OptimismOptimism

Strengths/ Hardiness/ Strengths/ Hardiness/

Resilience; Self-Righting Resilience; Self-Righting Capacities EmphasizedCapacities Emphasized

Integrated Bio-Psycho-Integrated Bio-Psycho-Social-Spiritual Holism; Social-Spiritual Holism; Life-contextLife-context

Self-Definition of Needs and Self-Definition of Needs and Goals/ Voice/ Consumer-Goals/ Voice/ Consumer-Driven/ Self-determination Driven/ Self-determination 

Paradigm ShiftParadigm Shift

Professional Control/ Professional Control/ Expert ServicesExpert Services

  

Power Over/ Coercion/ Power Over/ Coercion/ Force/ ComplianceForce/ Compliance

  

Reliance on Formal Reliance on Formal Supports or Supports or “Independence” “Independence”

Social Segregation; Formal Social Segregation; Formal Program Settings; Program Settings; Deviancy-Amplifying Deviancy-Amplifying Artificial SettingsArtificial Settings

   Maintenance/ Maintenance/

Stabilization; Risk-Stabilization; Risk-AvoidanceAvoidance

Self-Help/ Experiential Self-Help/ Experiential Wisdom/ Mutuality/ Self-Care/ Wisdom/ Mutuality/ Self-Care/ Partnering with ProfessionalsPartnering with Professionals

   Empowerment/ ChoiceEmpowerment/ Choice

Emphasis on Natural Emphasis on Natural Supports;Supports;

InterdependencyInterdependency   Integration; “Real Life” Integration; “Real Life”

Niches; Natural Community Niches; Natural Community Resources/ In Vivo Services Resources/ In Vivo Services and Supportsand Supports

   Active Growth/ New Skills & Active Growth/ New Skills &

Knowledge/ Dignity of RiskKnowledge/ Dignity of Risk

Paradigm ShiftParadigm Shift

Patient/ Client/ Patient/ Client/ Consumer Role Consumer Role

   Resource Resource

Limitations/ Limitations/ PovertyPoverty

   Helplessness/ Helplessness/

Passivity/ Adaptive Passivity/ Adaptive DependencyDependency

Normative Roles/ Normative Roles/ Natural Life Natural Life RhythmsRhythms

   Asset building/ Asset building/

OpportunitiesOpportunities

   Self-Efficacy/ Self-Self-Efficacy/ Self-

Sufficiency/Self-Sufficiency/Self-RelianceReliance

Overview of Project: Overview of Project: Phase TwoPhase Two

The findings from Phase One are The findings from Phase One are being operationalized into prototype being operationalized into prototype performance indicator item sets that performance indicator item sets that measure system-level variables that measure system-level variables that help or hinder consumers/ survivors help or hinder consumers/ survivors in their process of recovery.in their process of recovery.

The resulting instrument will then be The resulting instrument will then be fine-tuned for pilot testing in fine-tuned for pilot testing in participating states.participating states.

ContextContext

Steady movement toward evidence-Steady movement toward evidence-based practice – science mattersbased practice – science matters

Clinical need outstrips research – Clinical need outstrips research – experience mattersexperience matters

Recognition that the body and brain Recognition that the body and brain are connected – the body mattersare connected – the body matters

Recognition that the present is Recognition that the present is always determining the future – always determining the future – dreams matterdreams matter

ContextContext

Recognition of role of social support, social Recognition of role of social support, social norms, social meaning and responsibility – norms, social meaning and responsibility – people, families, culture, communities matterpeople, families, culture, communities matter

Recognition of important role of meaning-Recognition of important role of meaning-making – religion, spirituality, philosophy making – religion, spirituality, philosophy mattermatter

Recognition of important role of mind-body-Recognition of important role of mind-body-spirit integration – the whole mattersspirit integration – the whole matters

Growth in understanding of multicausality, Growth in understanding of multicausality, need for integrated conceptual framework, need for integrated conceptual framework, treatment, and systems approach = treatment, and systems approach = complexitycomplexity

Item DevelopmentItem Development

Brainstorming multiple performance Brainstorming multiple performance indicator statements as review each indicator statements as review each domain/theme and corresponding domain/theme and corresponding branching branching

Editing and refining the indicator items Editing and refining the indicator items brainstormed, a process of reaching brainstormed, a process of reaching consensus on wording of the indicators consensus on wording of the indicators items, eliminating redundancies, etc.items, eliminating redundancies, etc.

Checking the items against the codebook Checking the items against the codebook and findings to ensure comprehensiveness and findings to ensure comprehensiveness (sometimes resulting in additional (sometimes resulting in additional generation of indicator items) generation of indicator items)

Item DevelopmentItem Development

Reviewing current performance Reviewing current performance measurement efforts as a further means of measurement efforts as a further means of refining, editing and developing a full range refining, editing and developing a full range of indicatorsof indicators

Selecting appropriate response scales (e.g., Selecting appropriate response scales (e.g., frequency, agreement or valuation) and frequency, agreement or valuation) and identify the source of responseidentify the source of response

Conducting a think aloud session with a Conducting a think aloud session with a diverse group of consumer/survivors, diverse group of consumer/survivors, working with the participants to refine each working with the participants to refine each item in such as way that its meaning is clear item in such as way that its meaning is clear while retaining fidelity to what is intended to while retaining fidelity to what is intended to be measuredbe measured

Item DevelopmentItem Development

Proto-testing the resulting self-report Proto-testing the resulting self-report survey with 100 consumers/survivors, survey with 100 consumers/survivors, resulting in further refinements and resulting in further refinements and elimination of redundant items (e.g., elimination of redundant items (e.g., assessing Chronbach’s alpha for internal assessing Chronbach’s alpha for internal consistency, etc.)consistency, etc.)

Soliciting review and feedback with the Soliciting review and feedback with the SMHAs, project sponsors, and the MHSIP 2.0 SMHAs, project sponsors, and the MHSIP 2.0 Workgroup regarding Workgroup regarding such elements as such elements as significance, relevance, and implementation significance, relevance, and implementation burden of the self-report survey indicator burden of the self-report survey indicator set and of the individual administrative-set and of the individual administrative-level performance indicatorslevel performance indicators

Member Check Member Check Priorities:Priorities:

Peer support groups & Peer support groups & peer run services 60peer run services 60

Choice in treatment/ Choice in treatment/ services 44services 44

Meaningful Meaningful employment/ work 42employment/ work 42

Liveable income 39Liveable income 39 Helpful staff attitudes/ Helpful staff attitudes/

qualities 32qualities 32 Hindering staff Hindering staff

attitudes/ qualities 31attitudes/ qualities 31

Partnering/ Partnering/ collaborative collaborative relationships w/ relationships w/ providers 30providers 30

Helpful system culture Helpful system culture and orientation 27and orientation 27

Affordable housing 26Affordable housing 26 Consumer driven Consumer driven

service system 25service system 25 Helpful self internal Helpful self internal

states/attitudes 25states/attitudes 25 Hindering system Hindering system

culture and orientation culture and orientation 2424

Member Check Member Check Priorities:Priorities:

Hindering formal Hindering formal system qualities 23system qualities 23

Access to services Access to services problems 22problems 22

Benefits/ entitlements Benefits/ entitlements 2222

Peer recovery models Peer recovery models 2222

Spirituality 19Spirituality 19 Self reliance/ resource-Self reliance/ resource-

fulness/responsibility fulness/responsibility 1818

Disabling conditions Disabling conditions (hindering) 15(hindering) 15

Education about Education about disorder/ recovery 15disorder/ recovery 15

Ex stigma/prejudice 14Ex stigma/prejudice 14 Having someone who Having someone who

believes in me 11believes in me 11 Responsive roles staff Responsive roles staff

1010 Choice where live/ Choice where live/

housing 10housing 10 Medications 9Medications 9 Hindering staff-Hindering staff-

consumer relationship consumer relationship 99

Educational activities 9Educational activities 9

Demystifying RecoveryDemystifying Recovery

In all my years experience with psychiatric In all my years experience with psychiatric professionals, the one thing that’s been most professionals, the one thing that’s been most heartening is when the professional heartening is when the professional acknowledges the common humanity, theirs acknowledges the common humanity, theirs and mine, ours together. (CO 2172)and mine, ours together. (CO 2172)

Recovery is not so much getting Recovery is not so much getting mainstreamed, but expanding the mainstream mainstreamed, but expanding the mainstream to incorporate the fringes (Deegan, 1996).to incorporate the fringes (Deegan, 1996).

The goal is not so much as that of becoming The goal is not so much as that of becoming normal as to become more deeply, more fully normal as to become more deeply, more fully human in whatever unique way one is meant human in whatever unique way one is meant to be (Deegan, 1996).to be (Deegan, 1996).

Concluding QuoteConcluding Quote

We can’t stop here but We can’t stop here but there’s hope in watching there’s hope in watching the system evolve and the system evolve and the changes that are the changes that are taking place (OK 2350-taking place (OK 2350-2352).2352).