MENTAL HEALTH RECOVERY: WHAT HELPS AND WHAT HINDERS?

1. MENTAL HEALTH RECOVERY:WHAT 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 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 .

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 people’s experiences and opinions. • Recovery is facilitated or impeded through the dynamic interplay of many forces that are complex, synergistic and linked.

8. Basic Material Resources Self/Whole Person Hope, Sense of Meaning & Purpose Choice Independence Social Relationships Meaningful Activities Peer Support Formal Services Formal Service Staff Cross-Site Themes

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 it’s not about pathology, it’s 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 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)

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. 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  Moving from a Chronicity to a Recovery Paradigm

25. 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 Paradigm Shift

26. 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 Paradigm Shift

27. 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 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

33. 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 Member Check Priorities:

34. 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 Member Check Priorities:

35. 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). • 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).

36. 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).