Enhancing the Community Living and Participation of Individuals with Psychiatric Disabilities

 

Funding

NIDILRR


Description

Full community participation is arguably the most essential of rehabilitation goals and is a gauge of one’s quality of life. Community participation emerged as important when it became clear that simply living outside of institutional walls was insufficient to insure that individuals lived full and integrated lives (Bazelon Center for Mental Health Law, 2009). Community participation is a way to overcome the isolation and loneliness that are often reported as part of the experience of individuals with psychiatric disabilities and has been associated with a host of positive outcomes such as greater self-confidence, hope, self-determination and well-being (Bond, Salyers, Rollins, Rapp, & Zipple, 2004; Prince & Gerber, 2005; Townley, Kloos, & Wright, 2009). But, despite general agreement about the importance of community participation as a component of recovery, there has been little consensus on the dimensions comprising it (Heineman, 2010), or interventions to promote it, particularly for individuals with psychiatric disabilities.

In recent policy statement, both the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR, formally known as NIDRR) and the Substance Abuse and Mental Health Services Administration (SAMHSA) re-affirmed the importance of community living and participation (NIDRR Long Range Plan, 2013; SAMHSA, 2011). As noted by NIDILRR, individuals with disabilities are entitled to participate fully in “mainstream American society” and enjoy the independence, self-determination, opportunities, and contributions of other full citizens. Our proposed DRRP is designed to address these issues, mindful of both the personal and environmental barriers and facilitators to community participation (World Health Organization, ICF, 2002). In keeping with NIDILRR’s objectives, we propose a range of rigorous and appropriate research methodologies with consideration of the “stages-of-research” paradigm to promote development of evidence-based practices. Guiding our research is a community-based participatory approach, with input from individuals with psychiatric disabilities and other important stakeholders. Our proposed research activities extend the work of the Center for Psychiatric Rehabilitation in several ways: First, the Center has developed and tested a peer-led intervention designed to reduce self-stigma and enhance proactive coping, both significant barriers to community participation (Russinova, et al., 2013). Secondly, the Center has refined and tested peer led interventions. Third, we have developed, refined, and tested numerous instruments. We propose in this application to develop a broader consensus about the dimensions of community participation and to develop a measure that builds on the current efforts in the field. We further propose to manualize and test a peer-led intervention titled “Bridging Community Gaps Photovoice (BCGP)” which integrates group and individual peer support with photovoice and community assets mapping methodologies while building on our previous anti-stigma and peer support interventions. In summary, the proposed DRRP has the following goals:

Goal 1: Conduct an exploratory study to develop an in-depth understanding of community living and participation for adults with psychiatric disabilities.

Goal 2: Develop and refine of a new measure of community living and participation for individuals with psychiatric disabilities focusing on their sense of community belonging and enfranchisement.

Goal 3: Develop, refine and pilot-test an innovative peer-led intervention promoting community living and participation titled “Bridging Community Gaps Photovoice”.

Goal 4: Conduct a randomized clinical trial to evaluate the efficacy of the peer-led “Bridging Community Gaps Photovoice” intervention.

Goal 5: Provide training and technical assistance in the use of the new peer-led intervention and widely disseminate the intervention manuals, the new Multi-Dimensional Assessment of Community Participation (MDACP) instrument, and findings from related exploratory research activities.

The proposed research and dissemination activities are intended to contribute to ongoing public health efforts to address stigma as a fundamental cause of health inequalities and as a central driver of morbidity and mortality (Hatzenbuehler et al., 2013) and especially to address the new agenda of stigma reduction through social inclusion (Carter et al., 2013). They are also consistent with the international public health Movement for Global Mental (Collins et al., 2011; Patel et al., 2011) highlighting the need for effective mental health services accounting for the role grassroots communities can play in this effort (Campbell & Burgess, 2012).

BU Center for Psychiatric Rehabilitation Staff Role
Zlatka Russinova, Ph.D. Co-Principal Investigator
E. Sally Rogers, Sc.D. Co-Principal Investigator
Uma Millner, Ph.D. Project Director
Philippe Bloch, M.A. Senior Research Coordinator

Documents

No documents are available at this time. Please use the project contact for specific inquiries.

Contact

Inquiries related to the project should be addressed to:

Zlatka Russinova

zlatka@bu.edu
Boston University, Center for Psychiatric Rehabilitation
940 Commonwealth Avenue West, 2nd Floor
Boston, MA 02215

Or:

E. Sally Rogers

erogers@bu.edu
Boston University, Center for Psychiatric Rehabilitation
940 Commonwealth Avenue West, 2nd Floor
Boston, MA 02215