Resources for Youth and Families

Coming to terms with a mental illness is one of the most challenging endeavors a family can face. For many, mental illness strikes just when a young adult is gaining confidence in who they will become, how they will fit into their family and society, and fulfilling their own life dreams. When a young person experiences a mental illness with psychosis, the entire family is impacted. Parents wonder if their hopes and dreams for their child will be harmed, friendships change, and families can become more socially isolated by the stigma and shame that comes along with the diagnosis.

Family members can experience a range of emotions. Some may experience denial, hoping that with more testing another explanation will be found. Others may experience sadness and fear at what the future holds. Having known no one who has been in a similar situation, many family members feel lonely and isolated and may not even have the words to explain what is happening to others who may under other circumstances provide support and encouragement. Some will express confusion and have little understanding of what is going on or what is best for their child.

All of these are understandable reactions. It is normal to be angry, have feelings of guilt, and feel grief around having to figure out how to move past this new challenge that is now in front of you. Everyone goes through these stages at their own pace. If you are in one place today, you may be in another place tomorrow. Such changes are normal and will decrease over time. Things are not hopeless.

There are many reasons to be optimistic about your loved one’s chances to recover, learn strategies that he/she can use to manage his/her feelings and symptoms, and pursue his/her career, social, and relationship goals. There are treatments that work so that young adults can lead fulfilling lives. It is especially important to get the correct diagnosis and treatment early. The sooner a diagnosis is made, and treatment is begun the more positive the outcome will be for the individual. In addition, building a network of natural supports is critical. 

There are many ways that family members can help a person in recovery from psychosis. Family members and friends can:

• Help the person with psychosis get to treatment appointments and work with their treatment team.
• Stay in regular contact with the treatment team.
• Advocate for the person with psychosis to get the support he/she needs.
• Learn about psychosis so you know what is happening.
• Assist with remembering and initiating appointments and activities.
• Observe and report symptoms the person with psychosis may not be aware of.
• Include the person with psychosis in family and social activities.
• Maintain a safe, positive, supportive atmosphere at home and when socializing.
• Help with finances.
• Take care of yourself and get your questions answered.
• Understand the goals that your loved one has for recovery.
• Be patient.
• Attend family support groups in your area to learn how other families cope and support the recovery of loved ones.

Title: National Alliance on Mental Illness (NAMI)

Description: NAMI provides advocacy, education, support and public awareness so that all individuals and families affected by mental illness can build better lives. They offer information and guidance that can help family members of loved ones with mental illness, including young adults experiencing early psychosis.

Title: Substance Abuse Mental Health Services Administration (SAMHSA)

Description: SAMHSA offers resources for families and family-run organizations supporting behavioral health recovery and resilience for children, youth, and adults.

Title: National Institute of Mental Health (NIMH)

Description: This website provides printable materials such as factsheets, brochures, and a glossary. You’ll also find online and telephone assistance, informative videos, and more.

Title: Maryland Coalition of Families (MCF)

Description: MCF works in all counties in Maryland to help families access needed supports and services for their families and empower family members to advocate for improving services in all systems of care for children, youth, adults and families.

Title: The First Episode of Psychosis: A Guide for Patients and their Families

Citation: Compton, M.T., & Broussard, B. (2009). The First Episode of Psychosis: A Guide for Patients and their Families. NY: Oxford University Press.

Description: This book covers different mental health conditions, clarifies symptoms, discusses early warning signs, and includes treatment information for patients and families.

Title: Coping with Schizophrenia: A Guide for Families

Citation: Mueser, K.T., & Gingerich, S. (1994). Coping with Schizophrenia: A Guide for Families. NY: New Harbinger Publishers.

Description: This book includes problem-solving strategies (e.g., preventing relapses, regulating medications, finding community resources, responding to crises, and improving quality of life).

Title: The Complete Family Guide to Schizophrenia: Helping our Loved One Get the Most Out of Life

Citation: Mueser, K.T., & Gingerich, S. (2006). The Complete Family Guide to Schizophrenia: Helping our Loved One Get the Most Out of Life. NY: Guildford Press.

Description: This book explains schizophrenia and effective treatments, and then provides practical suggestions for managing symptoms. There are special sections on issues related to parents, children, siblings, and partners.

Title: Engaging with Schools to Support Your Child with Psychosis

Description: This tip sheet provides information on how to coordinate with schools when their child is experiencing psychosis. Information is provided related to disclosing a diagnosis, reducing bullying, setting goals, engaging support and accommodations, and preparing for school support team meetings.

Title: Schizophrenia and Related Disorders Alliance of America (SARDAA)

Description:  SARDAA “promotes improvement in lives affected by schizophrenia-related brain illnesses (mental illnesses involving psychosis). SARDAA promotes hope and recovery through support programs, education, collaboration, and advocacy.” Of note, SARDAA offers a family and friends support group (call-in), in addition to other resources.

Resources for Youth

The Teen Brain: 7 Things to Know "This fact sheet outlines how a teenager’s brain grows, matures, and adapts to the world. It also presents information on the teen brain’s resiliency, vulnerability to stress and mental health problems, and sleep patterns in teens."

The Teen Brain: Still Under Construction (NIH 11-4929) 
Studying the development of the brain, research has revealed that striking changes take place during the teen years. This brochure explains these changes and other keys to the adolescent brain. (1 p.)

Depression and College Students: Answers to College Students' Frequently Asked Questions About Depression (NIH 12-4266) Many people experience the first symptoms of depression during their college years. This booklet describes what depression is, how it affects college students, and treatment options. (7 p.)

Resources for Linking Young Adults and Families with Community and Peer-Led Organizations

An important goal is for young adults and their families to develop natural supports within the community. There are three general sets of community resources that will be needed for many young adults: (1) Mental health or clinical services not provided by the clinician or the clinic in which she/he is working, such as cognitive behavioral treatment for depression, anxiety disorders, or PTSD; inpatient substance abuse treatment, dialectical behavior therapy; (2) non-psychiatric medical services such as primary care services, lab services, other medical care, substance use detoxification; (3) peer or community support resources such as NAMI, AA/NA, Double Trouble, Depression and Bipolar Support Alliance. The clinician can actively assist the young adult in exploring and trying out such programs and activities. The exact nature of this assistance will differ for individual young adults – some will require only a referral while others will ask for more help in contacting a resource or want the team member to accompany him/her to the first or first several appointments/meetings.

Title: Family Peer Support Programs and Youth Groups - Maryland Coalition of Families

Description: MCF has a statewide staff of approximately 35 Family Peer Support Specialists and Substance Use Family Peer Support Specialists, all of whom have personal experience caring for a child with a behavioral health disorder. They provide information and referral, services navigation, and one-to-one family peer support and advocacy.  Many MCF staff offer parent/caregiver support groups.  Our staff usually work with caregivers whose children are under the age of 18 (with the exception of our substance use staff, who work with many families of young adults). MCF has two young adult groups, but both are advocacy groups, not support groups.

Title: On Our Own of Maryland, Inc.

Description: On Our Own is a non-profit organization that provides a wide array of self-help and advocacy programs and support groups across the state for people with mental illnesses.

Title: On Our Own of Maryland’s Transitional Age Youth Outreach Project

Description: The Transitional Age Youth (TAY) Outreach Project empowers young adults ages 18–29 with mental health and substance use struggles to share their experiences and speak out about the kinds of help and services they’d like to see within the behavioral health system where they receive care. This project hopes to foster an understanding that the life experiences of young adults are full of unique insights, and that they are able to reach out and touch the lives of other young adults through peer support, and as advocates for a behavioral health system which adequately addresses their needs and honors their voices.

Title: Strategic Sharing Youth Advocacy Guide: National Federation of Families for Children’s Mental Health

Description: This workbook is for individuals who have experienced traumatic life experiences and are interested in sharing their stories in an effort to promote change. Training in Strategic Sharing is an important part of advocacy – we encourage anyone who has experienced traumatic life events and wishes to share those experiences in an effort to promote positive changes for yourself and/or others, to do so with the help of this guide.

Title: Youth Leadership Toolkit: National Resource Center for Youth Development

Description: NRCYD’s philosophy is that youth engagement is a powerful way for organizations to include the young people they serve, in moving their work forward to better serve youth. The Youth Leadership Toolkits provides the fundamentals of meaningful youth engagement strategies.

Title: Schizophrenia and Related Disorders Alliance of America (SARDAA)

Description:  SARDAA “promotes improvement in lives affected by schizophrenia-related brain illnesses (mental illnesses involving psychosis). SARDAA promotes hope and recovery through support programs, education, collaboration, and advocacy.” Of note, SARDAA offers a peer support group that clients/consumers can call into, in addition to other resources.