Online Tutorial: Facilitating Meaningful Engagement of Young People and Their Families in Early Intervention Programs
CONTENT DEVELOPED BY: Nev Jones, PhD, Yale University School of Medicine, Program for Recovery and Community Health; Dina Tyler, Bay Area Mandala Project and the Bay Area Hearing Voices Network
A DISTANCE EDUCATION COURSE
Description: This web-based course is designed for clinicians and providers (including therapists, case managers, prescribers, and peer and family support specialists) working in early psychosis programs. The course is grounded in dozens of in-depth interviews with early-intervention clients and former clients, parents, and community-based providers, and it features nine characters whose stories are all derived from actual interviews. The overarching aim is to increase providers’ awareness of and ability to respond to diverse stakeholder perspectives on early psychosis, including the perspectives of members of underrepresented socioeconomic, racial/ethnic, and cultural minority groups.
This curricula consists of three self-guided Modules that are intended to be viewed in order.
This module provides a brief overview of variations in early-intervention services across the United States; reviews the empirical research literature on engagement and disengagement from early psychosis programs; and introduces participants to the course’s nine featured characters—four young adults, two family members, and three direct providers, including a case manager/clinical supervisor, family support specialist, and young adult peer specialist. BEGIN »
The second module delves into the experiences of young people who have received early-intervention services, as well as their families. It addresses the role and impact of clients’ backgrounds, including socioeconomic disadvantage and racial/ethnic intersections, as well as power struggles between clients and providers that often fuel or complicate disengagement. BEGIN »
In this final module, participants are introduced to a variety of different strategies for better understanding young people’s experiences of psychosis and engaging them and their family members in early-intervention services. Given the variation in different early psychosis program structures, components, and policies, the module emphasizes deeper critical thinking and creativity about possible ways to handle potential disconnects and engagement or re-engagement. BEGIN »
Key Empirical References on Disengagement, Services Experience, Culture, and Background Adversity
Cairns, V. A., Reid, G. S., & Murray, C. (2015). Family members’ experience of seeking help for first‐episode psychosis on behalf of a loved one: A meta‐synthesis of qualitative research. Early Intervention in Psychiatry, 9(3), 185–199.
Doyle, R., Turner, N., Fanning, F., Brennan, D., Renwick, L., Lawlor, E., & Clarke, M. (2014). First-episode psychosis and disengagement from treatment: A systematic review. Psychiatric Services, 65(5), 603–611.
Essock, S. (2017). When social and environmental adversity causes schizophrenia. American Journal of Psychiatry, 174(2), 89–90.
Islam, Z., Rabiee, F., & Singh, S. P. (2015). Black and minority ethnic groups’ perception and experience of early intervention in psychosis services in the United Kingdom. Journal of Cross-Cultural Psychology, 46(5), 737–753.
Jones, N., Godzikovskaya, J., Zhao, Z., Vasquez, A., Gilbert, A. & Davidson, L. (in press). Intersecting disadvantage: Unpacking sub-optimal outcomes within early intervention in psychosis services. Early Intervention in Psychiatry.
Lal, S., & Malla, A. (2015). Service engagement in first-episode psychosis: Current issues and future directions. The Canadian Journal of Psychiatry, 60(8), 341–345.
Lucksted, A., Essock, S. M., Stevenson, J., Mendon, S. J., Nossel, I. R., Goldman, H. H., ... Dixon, L. B. (2015). Client views of engagement in the RAISE Connection Program for early psychosis recovery. Psychiatric Services, 66(7), 699–704.
Lucksted, A., Stevenson, J., Nossel, I., Drapalski, A., Piscitelli, S., & Dixon, L. B. (2016). Family member engagement with early psychosis specialty care. Early Intervention in Psychiatry. doi:10.1111/ eip.12403
Myers, N. A. L., & Ziv, T. (2016). “No one ever even asked me that before”: Autobiographical power, social defeat, and recovery among African Americans with lived experiences of psychosis. Medical Anthropology Quarterly, 3(30), 395–413.
Stilo, S. A., Gayer-Anderson, C., Beards, S., Hubbard, K., Onyejiaka, A., Keraite, A., ... Di Forti, M. (2017). Further evidence of a cumulative effect of social disadvantage on risk of psychosis. Psychological Medicine, 47(5), 913–924.
van Schalkwyk, G. I., Davidson, L., & Srihari, V. (2015). Too late and too little: Narratives of treatment disconnect in early psychosis. Psychiatric Quarterly, 86(4), 521–532.
Individuals who have taken the course and are interested in learning more about early psychosis and strategies for supporting engagement (including trauma-informed work and cultural and structural competency) are encouraged to explore some of the hyperlinked resources listed on the next page. Each contains valuable information, as well as references for additional material.
The Substance Abuse and Mental Health Services Administration (SAMHSA) supported the development of Inventory and Environmental Scan of Evidence- Based Practices for Treating Persons in Early Stages of Serious Mental Disorders. This comprehensive informational resource includes examples of coordinated care models; information on individual evidence-based practices that are common components of such models; a compilation of additional resources for providers, policymakers, families, and consumers on this topic; and brief narrative profiles for 10 specific coordinated care programs. This document and a number of additional SAMHSA resources on first episode psychosis (e.g., fact sheets, issue briefs, brochures, and archived webinars) also are available
- SAMHSA also operates a National Center for Trauma-Informed Care (https://www.samhsa.gov/nctic), which includes extensive resources related to trauma and adversity that are aimed at reducing the use of seclusion, restraints, and coercive care in public mental health and allied systems.
- SAMHSA’s Bringing Recovery Supports to Scale Technical Assistance Center Strategy (BRSS TACS; https://www.samhsa.gov/brss-tacs) provides extensive resources, including an ongoing webinar series aimed at increasing the recovery orientation of mental health programs and supporting key elements of recoveryoriented programs, such as peer and family support staff.
- The National Association of State Mental Health Program Directors (NASMHPD) launched an Early Intervention in Psychosis (EIP) virtual resource center in 2015 (early-intervention-psychosis-eip). The purpose of the EIP site is to provide reliable information for practitioners, policymakers, individuals, families, and communities to foster more widespread understanding, adoption, and utilization of early-intervention programming for psychosis. EIP is designed to provide an array of information through a consolidated, user-friendly site, and it is updated periodically. The website includes a guidance manual called Peer Involvement and Leadership in Early Intervention in Psychosis Services, which is particularly relevant to this training (Peer- Involvement-Guidance_Manual_Final.pdf).
- The youth co-produced British early psychosis project “Is anyone else like me?” (http://www.isanyoneelselikeme.org.uk/) compiles numerous youth-centered engagement resources, including a youth-produced training video “depicting a positive and negative engagement scenario” (http://www.isanyoneelselikeme.org.uk/info/staff-training-videos).
- Intervoice (http://www.intervoiceonline.org/) is the hub of the International Hearing Voices Movement and provides numerous resources on meaning-centered approaches to understanding and working with voices and emphasizing links between voices and difficult life experiences.
- Crazywise (https://crazywisefilm.com/) is an award-winning documentary that examines cultural issues and controversies surrounding the ways in which psychosis is perceived and handled in different international contexts.
- The Prodrome and Early Psychosis Program Network (PEPPNET; https://med.stanford.edu/peppnet.html) acts as a forum for people to share information nationally about ongoing early psychosis initiatives. PEPPNET aims to bring together individuals from diverse fields and backgrounds to forge national connections and address issues and topics relevant to early psychosis at the local, state, and national levels. The site has resources such as a program directory of early psychosis intervention programs across the country. Additionally, individuals can sign up for the national PEPPNET Listserv.