Psychosis: Changing Perceptions through Art & Science

Program Description

In 2016, SARDAA partnered with The Bloc communications firm to create Hearing Voices of Support (HVoS) to understand psychosis and eliminate stigma. Research indicates stigma has three elements: ignorance, prejudice, and discrimination. Discrimination affects employment, personal relationships, access to medical treatment and other services. HVoS implements effective strategies for lasting change in attitudes and behavior–direct social contact with people affected by schizophrenia and increased media portrayls (Thornicroft, Brohan, Kassam, & Lewis-Holmes, 2008; Corrigan & Watson, 2001; Gaebel & Baumann, 2003.) HVoS officially launched in 2017 and includes: Website of professionally produced videos of people speaking of their experiences with psychosis and how people can be supportive; Facebook page to share stories, upload videos, like and share; Multimedia campaign of the first jumbotron in Times Square displaying positive messages of schizophrenia (COURAGE, HOPE, LOVE); and Times Square Flash Mob singing “Brave.” HVoS is a perception changing experiential installation complete with artwork, exit interviews and surveys. HVoS eliminates the stigma of psychosis and creates a positive community of acceptance and hope. New strategies like HVoS are necessary to combat the stigma surrounding mental illness, including psychosis. SARDAA is the only national voice exclusively representing people and their loved ones affected by psychosis.

Creativity

HVoS transforms a symptom of psychosis- “hearing voices” – into a positive “hearing voices of support,” stretching beyond the traditional means of sharing information to address mental illness issues. HVoS exhibits originality, creativity and resourcefulness to engage a diverse community. It features the video interviews of diagnosed individuals and family members from diverse backgrounds from across the country. Attendees enter a darkened gallery filled with stage smoke and step into a pillar of light turning on directional speakers surrounding the guest with the voice of the projected video creating an intimate experience between the speaker and the viewer. The ambiance around each video creates an atmosphere where the person watching the interview senses in a profound way what a person with psychosis might experience. Guests are invited to record their experience and their messages of support. Afterward, people affected by psychosis and mental health professionals are available for discussion.

Leadership

HVoS provides a new approach to address mental health issues through its design and implementation, which other organizations can emulate. Program leaders are disseminating information by: 1. Engaging Assistant Secretary McCance-Katz who will advocate to include schizophrenia in the CDC Neurological Diseases Survey, as the first step toward reclassifying schizophrenia as a neurological brain disorder. Reclassification means increased scientific research, access to medical treatment and improved treatment outcomes. 2. Sharing information with government officials to gain understanding and support to reclassify schizophrenia as a neurological brain disorder. 3. Engaging a lobbyist to guide our efforts to reclassify schizophrenia and help organize the HVoS Installation and Scientific Briefing on Capitol Hill (September 2018.) 4. Sharing HVoS at community presentations. 5. Creating a dedicated website, hearingvoicesofsupport.org; a dedicated Facebook page, facebook.com/hearingvoicesofsupport; and Instagram.com/hearingvoicesofsupport. 6. Board members and CEO securing media interviews: print, radio, and TV

Sustainability

SARDAA has received HVoS project support since its inception in 2016. We continue to seek funding and establish collaborations to sustain the program. We have also expanded SARDAA staff with a Director of External Affairs to establish and grow strategic partnerships and support. 2017/2018 Confirmed Funding: Janssen Pharmaceuticals – $15,000 William Risser Charitable Trust – $60,000 Alkermes Pharmaceuticals – $10,000 Individual Donors – $5,000 2016 Funding: Alkermes Pharmaceuticals – $100,000 William Risser Charitable Trust – $30,000 SARDAA collaborates with NIMH Research Alliance Partners, the STARR Coalition, NAMI, TAC, MHA, American Brain Coalition, the Brain and Behavior Research Foundation, World Federation of Mental Health, BIO International/Patient Advocacy and pharmaceutical companies. The American Brain Coalition has agreed to host the HVoS Installation and Scientific Briefing in Washington, D.C. (September 2018.) We have also engaged a lobbyist to guide our efforts to reclassify schizophrenia and help organize the HVoS Installation on Capitol Hill.

Replicability

SARDAA can give guidance and direction on HVoS production, methods of implementation, adaptation and promotion strategies. The customized equipment is shelved and available for rent. Other organizations can duplicate the display with the instructions and specifications we can provide. We also partner with other organizations and give guidance on ways to adapt the program to advance their strategic priorities. For example, we are currently partnering with curators at The Smithsonian Institution to exhibit HVoS in the fall of 2020. Other organizations can showcase HVoS at mental health awareness meetings and conferences.

Results/Outcomes

HVoS outcomes have been extremely positive. 270 Exit Surveys and 87 Videoed Interviews have been collected which indicated significant changes in perceptions of schizophrenia. Surveys indicated: 85% Increased Their Understanding of Schizophrenia 74% Are More Able To Discuss Schizophrenia 67% Corrected Their Misconceptions About Schizophrenia 79% Increased Their Desire to Help Those with Schizophrenia These positive results drive SARDAA to replicate HVoS across the nation to change perceptions, attitudes and dispel myths surrounding mental illness, including psychosis. In September 2018, we will present HVoS alongside a Scientific Neurological Briefing in Washington, D.C. on Capitol Hill to educate decision makers to support the reclassification of schizophrenia to a neurological brain disorder. Reclassification will lead to more scientific research, access to appropriate medical treatment and improved treatment outcomes. In 2020, SARDAA will partner with The Smithsonian Institution to exhibit HVoS to raise awareness and collect more exit surveys and video interviews.