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

Community based p articipatory r esearch for self-management support of formerly homeless people with serious mental illness. Lara Carson Weinstein Capstone Presentation May 10, 2011 Capstone advisor: Gail Daumit. Presentation Outline. Background and community context

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

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  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!

  19. 1.     Alsop R, Heinsohn N. Measuring Empowerment in Practice: Structuring Analysis and Framing Indicators. World Bank Policy Research Working Paper No. 3510, 2005. 2.     Anand P. Capabilities and health. J Med Ethics. 2005; 31(5):299-303. 3.     Burke JG, O'Campo P, Peak GL, Gielen AC, McDonnell KA, Trochim WMK. An introduction to concept mapping as a participatory public health research method. Qual Health Res. 2005; 15(10):1392-1410. 4.     Cacciola JS, Alterman AI, McLellan AT, Lin Y-, Lynch KG. Initial evidence for the reliability and validity of a "lite" version of the addiction severity index. Drug Alcohol Depend. 2007; 87(2-3):297-302. 5.     Campbell J. How consumers/survivors are evaluating the quality of psychiatric care. Eval Rev. 1997; 21(3):357-363. 6.     Colton CW, Manderscheid RW. Congruencies in increased mortality rates, years of potential life lost, and causes of death among public mental health clients in eight states. Prev Chronic Dis. 2006; 3(2). 7.     Gelberg L, Andersen RM, Leake BD. The behavioral model for vulnerable populations: Application to medical care use and outcomes for homeless people. Health Serv Res. 2000; 34(6):1273-1302. 8.     Green CA, Perrin NA, Polen MR, Leo MC, Hibbard JH, Tusler M. Development of the patient activation measure for mental health. Adm Policy Ment Health Ment Health Serv Res. 2010; 37(4):327-333. 9.     Hahn JA, Kushel MB, Bangsberg DR, Riley E, Moss AR. Brief report: The aging of the homeless population: Fourteen-year trends in san francisco. J Gen Intern Med. 2006; 21(7):775-778. 10.     Hibbard JH, Stockard J, Mahoney ER, Tusler M. Development of the patient activation measure (PAM): Conceptualizing and measuring activation in patients and consumers. Health Serv Res. 2004; 39(4 I):1005-1026. 11.     Hopper K. Rethinking social recovery in schizophrenia: What a capabilities approach might offer. Soc Sci Med. 2007; 65(5):868-879. 12.     Lorig KR, Sobel DS, Ritter PL, Laurent D, Hobbs M. Effect of a self-management program on patients with chronic disease. Eff Clin Pract. 2001; 4(6):256-262. 13.     Mausbach BT, Bowie CR, Harvey PD, et al. Usefulness of the UCSD performance-based skills assessment (UPSA) for predicting residential independence in patients with chronic schizophrenia. J Psychiatr Res. 2008; 42(4):320-327. 14.     McHugo GJ, Caspi Y, Kammerer N, et al. The assessment of trauma history in women with co-occurring substance abuse and mental disorders and a history of interpersonal violence. J Behav Health Serv Res. 2005; 32(2):113-127. References

  20. References (Continued) 14.     McHugo GJ, Caspi Y, Kammerer N, et al. The assessment of trauma history in women with co-occurring substance abuse and mental disorders and a history of interpersonal violence. J Behav Health Serv Res. 2005; 32(2):113-127. 15.     Morden NE, Mistler LA, Weeks WB, Bartels SJ. Health care for patients with serious mental illness: Family medicine's role. J Am Board Fam Med. 2009; 22(2):187-195. 16.     Nussbaum MC. Women and Human Development: The Capabilities Approach. Cambridge: Cambridge University Press, 2000. 17.     O'Connell JJ. Premature Mortality in Homeless Populations; A review of the literature. Nashville: National Health Care for the Homeless Council, Inc., 2005. 18.     Parks J, Svendsen D, Singer P, Foti M, Mauer B. Morbidity and Mortality in People with Serious Mental Illness. 2006; . 19.     Radimer KL. Measurement of household food security in the USA and other industrialised countries. Public Health Nutr. 2002; 5(6 A):859-864. 20.     Ruger JP. Health capability: Conceptualization and operationalization. Am J Public Health. 2010; 100(1):41-49. 21.     Saha S, Chant D, McGrath J. A systematic review of mortality in schizophrenia: Is the differential mortality gap worsening over time? Arch Gen Psychiatry. 2007; 64(10):1123-1131. 22.     Sen AK. Development as Freedom. Oxford: Oxford University Press, 1999. 23.     Stein JA, Andersen R, Gelberg L. Applying the gelberg-andersen behavioral model for vulnerable populations to health services utilization in homeless women. J Health Psychol. 2007; 12(5):791-804. 24.     Toobert DJ, Hampson SE, Glasgow RE. The summary of diabetes self-care activities measure: Results from 7 studies and a revised scale. Diabetes Care. 2000; 23(7):943-950. 25.     Trochim WMK. An introduction to concept mapping for planning and evaluation. Eval Program Plann. 1989; 12(1):1-16. 26.     Wallerstein NB, Duran B. Using community-based participatory research to address health disparities. Health Promot Pract. 2006; 7(3):312-323. 27.     Weinstein LC, Henwood BF, Matejkowski J, Santana A. Moving from street to home: Health status of entrants to a housing first program. Journal of Primary Care and Community Health. 2011; 2(1). 28.     Williams GC, Freedman ZR, Deci EL. Supporting autonomy to motivate patients with diabetes for glucose control. Diabetes Care. 1998; 21(10):1644-1651.

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