RECOVERY: WHAT HELPS AND WHAT HINDERS?

1. RECOVERY: WHAT HELPS AND WHAT HINDERS? A National Research Project for the Development of Recovery Facilitating System Performance Indicators.

2. Technical Support andResearch Team: • Co-Principal Investigators • Steven J. Onken, Ph.D. • Jeanne Dumont, Ph.D. • Co-Investigators • Douglas H. Dornan, M.S. • Ruth Ralph, Ph.D. • Priscilla Ridgway, M.S.W.

3. Arizona (Bernadette Phelan) Colorado (Deb Kupfer) New York (Chip Felton) Oklahoma (Steve Davis) Rhoda Island (Noelle Wood) Texas (Sue Lummus) South Carolina (Ellen Sparks) Utah (Denny Geertsen) Washington (Judy Hall) State Mental Health Authority Research Partners:

4. Project Sponsors: • Center for Mental Health Services, Survey and Analysis Branch • Columbia University Center for the Study of Social Work Practice • Human Services Research Institute (HSRI) • Missouri Institute of Mental Health (MIMH)

5. Project Sponsors: • NASMHPD National Research Institute • NASMHPD National Technical Assistance Center • The Nathan Kline Institute for Psychiatric Research: The Center for Study of Issues in Public Mental Health

6. 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.

7. Recovery Working Definition: • An ongoing dynamic interactional process between a person’s strengths, vulnerabilities, resources and the environment involving 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 hope, belief, personal power, respect and self-determination.

8. Assumptions • Recovery from psychiatric disability is an individual process that is, and must remain, based in self-agency. • Recovery can best be understood through the lived experience of persons with psychiatric disabilities who are in the process of recovery. • Inadequate knowledge exists on the lived experience of recovery and the factors and processes in the social and physical environment that help or hinder recovery.

9. Assumptions (Continued) • Formal services may or may not support or influence recovery. Some people recover without formal services, some people recover despite poor services, while others attribute recovery, in part, to formal services. The role that formal helping systems play in recovery must be placed in the context of other factors that support or hinder recovery.

10. Assumptions (Continued) • Recovery research should have significant consumer/survivor involvement at every stage, from research design, data collection and data analysis to interpretation and dissemination of findings. Research should be a partnership; consumers/survivors should not be treated merely as the objects of study. • Consumer/Survivor involvement should extend beyond mere tokenism that has unfortunately characterized many past efforts. There is a profound diversity within the population. A national project should take into account and honor diverse perspectives.

11. Assumptions (Continued) • Without fundamentally re-conceptualizing the relationship between the individual consumers/survivors and the formal helping system, well intended policy makers risk promulgating a cosmetic initiative of recovery that maintains the dependence of individuals on the system. • The critical nature of this undertaking demands scientific rigor in each step of the project. Conceptualization and research regarding mental health recovery is still in its infancy. Efforts to address reliability and validity are articulated and followed throughout the course of this project.

12. Overview of Project: Phase One • A qualitative research design to create grounded theory • Incorporates a structured focus group approach with a maximum variability sample frame • The data collected from each focus group will undergo structured content analysis leading to a set of critical concepts and interpretive themes • Common set of concepts and themes is then developed for the pooled data set across all focus groups.

13. Overview of Project: Phase Two • The findings from Phase One will be operationalized into 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 pilot tested in participating states.

14. Accomplishments of Phase One(as of December 5, 2001) • Reviewed existing recovery literature and instruments • Identified five core domains around which to solicit consumer/survivor input • Developed structured question protocol • Trained focus group facilitators

15. Accomplishments of Phase One(as of December 5, 2001) • Collected data from 10 focus groups that involved 113 participants and nine states • Transcribed the tapes of the focus groups • Coded the individual transcripts • Monitored for inter-rater reliability

16. In Process • Focus Group Member checks • Master codebook development • Recoding of transcripts • Monitoring for inter-rater reliability

17. Next Steps • Phase One final report • Secure funding for Phase Two