Community based p articipatory r esearch for self-management support of formerly homeless people with serious mental

1. Community based participatory researchfor self-management support of formerly homeless people with serious mental illness Lara Carson Weinstein Capstone Presentation May 10, 2011 Capstone advisor: Gail Daumit

2. Presentation Outline • Background and community context • Preliminary studies • Significance • Conceptual framework • Specific Aims • Approach • Future plans

3. Grant type: Patient-oriented career development award (K 23) NIMH- Division of Service and Intervention Research • Candidate • Career Development Plan • Research Plan • Mentors/Consultants/Collaborators • Environment and Institutional Commitment

4. Community Context Pathways to Housing Housing First Project HOME Continuum of Care Street Outreach Permanent Housing Safe Haven Transitional Housing Supportive Services & Healthcare Permanent Housing Supportive Services & Healthcare Permanent Housing Entry Requirements: Chronic Homelessness + SMI

5. Preliminary studies • Epidemiological monitoring and needs assessment (Weinstein 2011) • CBPR: Health decision making • CBPR: Standardized Chronic Disease Self Management

6. Significance • Markedly increased morbidity and mortality (Parks 2005, Colton 2006, Saha 2007, Morden 2009) • Limited prior studies in this population • Unique needs of population (O’Connell 2005, Hahn 2006) Photo credit: Sarah Bones

7. Innovation • Research team=Consumer experts + PI+ Advisory Panel (Wallerstein 2006) • Unique opportunities with transition to housing • Utilizes the Capabilities Approach (Sen 1999, Nussbaum 2000, Anand 2005, Hopper 2007, Ruger 2010) • exploring barriers, supporting participation,expanding definition of valued outcome measures for health

8. Community Participation Autonomy, Self-efficacy Health status, Knowledge, Skills, Motivation, Expectations, Psychiatric symptoms, Substance use, Health beliefs, Trauma history Homeless Duration Agency Self- Management & Improved Health Capabilities Health- Relevant Capabilities Education, Access to care, Social support, Financial Securty, Safety, Housing, Food Security, Neighborhood Opportunity Adapted from Alsop and Heinsohn 2005

9. Specific Aims • Aim 1A: Examine relationships, patterns and correlates of a diverse set of variables on self-management using face-to face surveys • Aim 1BPerform in-depth qualitative interviews to further clarify individual needs and external opportunities that impede or enhance successful disease self-management. • Aim 2: Use a CBPR approach to develop an individualized intervention for self-management support that addresses modifiable barriers. • Aim 3: Test the feasibility of the intervention

10. Aim 1A-Examine relationships, patterns and correlates of a diverse set of variables on self-management • Health Behavior Model for Vulnerable Populations and the Health Capability Profile(Gelberg 2000, Stein 2007 , Ruger 2010) • Concept Mapping (Trochim 1989, Campbell 1997, Burke 2005) • Review of instruments • Survey development • Pilot testing • Survey administration to 145 participants

11. Table 1 – Potential Variables & Measurement Instruments

12. Aim 1 A: Analysis • Expect skewed distribution • Construct categories • Multivariate technique • Identify independent sources of variability in self-management • Review results with research team

13. Aim 1B-Qualitative Interviews to clarify individual needs and external opportunities • Develop and pilot test interview guide • Purposive sampling of a subset of 20 participants • Certain categories maybe be over sampled to test potential emerging associations

14. Aim 1B: Analysis • Recurrent themes relating to barriers to self-management support • Correlations and diversions from the findings from the capabilities framework in general and the findings from Aim 1A

15. Aim 2-Particpatory Intervention Development • Review data from Aims 1A and B • Review current models • Review community resources • Concept mapping • Intervention development • Manualize intervention protocol

16. Aim 3-Fesability Testing • 3 iterative cycles of feasibility testing • 10 participants per cycle • Baseline data: demographics, self reported health status, specific self-management behaviors and important independent variables identified in Aim 1. • Outcomes: pre and post short-term measures of chronic disease status and self-management such as blood pressure and medication adherence • Process evaluation • Qualitative interviews regarding impact

17. Future plans • Larger randomized intervention study • Designed, implemented, and analyzed using CBPR methodology • Novel outcome measures informed by Capabilities Approach

18. Many thanks to mentors at JHSPH, TJU, CSRSCand Pathways to Housing Consumer Research Team!

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