Schizophrenia Patient Resources

Patient and Family Resources on Psychosis

Websites

General Information and Resources on Psychosis

• National Institute of Mental Health on Understanding Psychosis
• National Alliance for the Mentally (NAMI) – Education and support for people with mental health conditions and their families
• Substance Abuse and Mental Health Services Administration (SAMHSA) – The website has several resources focused on early psychosis and a Behavioral Health Treatment Services Locator
• Understanding a First Episode of Psychosis fact sheets: Young Adult Version; Caregiver Version
• Early Serious Mental Illness Treatment Locator
• Center for Early Detection, Assessment and Response to Risk (CEDAR) Clinic resource list for young people experiencing psychosis and for families
• Center for Practice Innovations Family Portal – Resources, videos, and recovery stories for first-episode psychosis
• Psychosis-Risk and Early Psychosis Program Network (PEPPNET) – PEPPNET acts as a forum to share information nationally about ongoing clinical high-risk and and first-episode psychosis initiatives
• Schizophrenia & Psychosis Action Alliance – Online education, resources, and support groups
• What Matters Most – These videos inspire young people who struggle with their mental health to voice their views on their experiences and what matters most in their recovery
• Open the Doors – Information and recovery stories for people with psychosis, their families, and friends in 8 different languages
• Medscape Schizophrenia Resource Center – Latest evidence-based research for treatment of schizophrenia spectrum disorders

On Coordinated Specialty Care

Our program follows a coordinated specialty care model that has proven to be an effective treatment to help individuals with early psychosis lead productive and independent lives. It is a team-based, recovery-oriented approach that includes multiple components, including (but not limited to) individual psychotherapy using cognitive-behavioral approaches for psychosis, family support and education, medication management, and supported employment and education services.

• What Is Coordinated Specialty Care and Why Is It Effective?
• Information about the NIMH Recovery After an Initial Schizophrenia Episode (RAISE) study testing coordinated specialty care in the United States
• Information about the NAVIGATE coordinated specialty care model, which our program follows and our providers are trained in
• OnTrackNY – Resources and recovery stories in English and Spanish from a similar coordinated specialty care program implemented in New York State and other states
• Early Assessment and Support Alliance (EASA) – Resources and recovery stories in English and Spanish from a similar coordinated specialty care program implemented in Oregon and other states
• PIER program – Resources and recovery stories from a similar coordinated specialty care program implemented in Maine

Local Resources and Networks

• Massachusetts Psychosis Network for Early Treatment (MAPNET)
• Massachusetts Psychosis Access and Triage Hub (MPATH) – A free referral and consultation service on early psychosis
• Find your local NAMI chapter in Massachusetts
• New England Mental Health Technology Transfer Center Network (MHTTC Network) (funded by SAMHSA)
• Massachusetts Family Resource Centers
• Young Adult Access Centers
• MA Behavioral Health Helpline (Chat online or text/call: 833-773-2445) – 24-hour local crisis team that serves your neighborhood

For Medication Information

• American Psychiatric Association’s SMI Advisor – for individuals and families looking to find answers on evidence-based treatments

Online Peer and Support Groups for Individuals

• WellSpace Program (McLean Hospital) – Free therapeutic, recreational, and vocational support groups (in-person) for young adults ages 18-30 with experiences of psychosis.
  • Virtual and In-Person Group Schedule
  • Supported Employment and Education Services
• Wellness Recovery Action Plan Group (McLean Hospital) – Free 10-session, in-person group for developing a personal wellness plan
• Kiva Centers Zoom Groups – Free, peer-run virtual groups on mental health-related topics, personal identities (e.g., BIPOC, LGBTQ+), and activities
• Students with Psychosis – A nonprofit that empowers student leaders and adovcates, with resources such as peer support groups, community meetings, a community Discord platform, podcasts, and events
  • Recovery stories on the Students with Psychosis Youtube channel

Organizations with Resources and Online Programs for Families

• NAMI Family-to-Family Program – A free, 8-session educational program for family, significant others and friends of people with mental health conditions, taught by other NAMI-trained families
• National Federation of Families for Children’s Mental Health (FFCMH) – A national family-run organization linking more than 120 chapters and state organizations focused on the issues of children and youth with emotional, behavioral, or mental health needs and their families
• Strong 365 – Provides online education, peer support, and connection to providers specializing in first episode psychosis across the United States.
• School of Hard Talks – A free online course for parents to learn to use motivational interviewing in conversations with their teen and young adult children
• Flourishing Families (Boston University Psychiatric Rehabilitation) – A free 6-week, comprehensive supports and skills-building program for caregivers of young adults who live with mental health and/or substance use conditions to heal and build sustainable, health-promoting relationships
• Crafting Support Project (McLean Hospital) – A free webinar series on how families can use skills from Community Reinforcement and Family Training (CRAFT) to improve communication and foster healthy behavior change
• Handhold – A resource developed by Massachusetts Department of Health for parents who have started to notice signs of mental illness in their child. It has information on what signs to look for, helpful tips from other parents, and resources to help you find the right treatment for your child and family

Books

For Information/Support

• Amador, X. (2000). I am Not Sick. I Don’t Need Help! Helping the Seriously Mentally Ill Accept Treatment. Peconic: Vida Press.
• Broussard, B., & Compton, M.T. (2010). The First Episode of Psychosis: A Guide for Patients and Their Families. Oxford University Press.
• Dickens, R. & Marsh, D. (Eds.). (1994). Anguished Voices: Siblings and Adult Children of Persons with Psychiatric Disabilities. Boston: Center for Psychiatric Rehabilitation, Sargent College of Allied Health Professions.
• Duckworth, K. (2022). You Are Not Alone: The NAMI Guide to Navigating Mental Health – With Advice from Experts and Wisdom from Real People and Families. Zando Publishing.
• Freudenreich O & Cather C. (2021). Facing serious mental illness: A guide for patients and their families. (Stern TA, Ed.). Boston: MGH Psychiatry Academy.
• Friedman, M. (2000). Everything You Need to Know About Schizophrenia. New York: The Rosen Publishing Group.
• Kline, E. (2023). The School of Hard Talks: How to Have Real Conversations with Your (Almost Grown) Kids. Sasquatch Books.
• Marsh, D.T. & Dickens, R. (1997). How to Cope with Mental Illness in Your Family: A Self Care Guide for Siblings, Offspring, and Parents. New York: Jeremy P. Tarcher/ Putnam.
• Mueser, K.T. & Gingerich S. (2006). The Complete Family Guide to Schizophrenia: Helping Your Loved One Get the Most Out of Life. The Guilford Press.
• Mueser, K.T. & Gingerich, S. (1994). Coping with Schizophrenia: A Manual for Families, Consumers, and Providers. New Harbinger Publications.
• Temes, R. (2002). Getting Your Life Back Together When You Have Schizophrenia. New Harbinger Publications.
• Torrey, E.F. (1995). Surviving Schizophrenia: A Manual for Families, Consumers, and Providers. New York: Harper Collins Publishers, Inc.
• Woolis, R. (1992). When Someone You Love Has a Mental Illness: A Handbook for Families and Friends. New York: Jeremy P. Tarcher/ Putnam.

Help for Specific Symptoms or Other Conditions

• Hayward, M., Strauss, C., & Kingdon, D. (2018). Overcoming Distressing Voices: A self-help guide using cognitive behavioral techniques. Robinson books.
• Freeman, D., Freeman, J., & Garety, P. (2021). Overcoming Paranoid and Suspicious Thoughts: : A self-help guide using cognitive behavioral techniques. Robinson books.
• Winston, S. M., & Seif, M. N. (2017). Overcoming Unwanted Intrusive Thoughts: A CBT-Based Guide to Getting Over Frightening, Obsessive, or Disturbing Thoughts. New Harbinger Publications.
• Hallowell, E. M. & Ratey, J. J. (2021). ADHD 2.0: New Science and Essential Strategies for Thriving with Distraction – from Childhood through Adulthood. Ballantine Books.
• Cognitive Behavioral Therapy for Insomnia Online Program (CBTi)
• Self-Help Resources and Workbooks for frequently co-occurring mental health issues, such as anxiety, depression, worry and rumination, sleep difficulties, and self-esteem issues
• Mindful Self-Compassion and Guided Self-Compassion Practices by Dr. Kristin Neff