Peer-Led Support Helps Parents and Caregivers Cope with Mental Illness

When her teenage daughter was diagnosed with bipolar disorder, Deniece Chi did not know where to turn for help. A native of Belize residing in New York City, she had no experience with or understanding of mental illness. Her relatives dismissed the diagnosis and suggested that a lack of discipline was the true reason for her daughter’s behavior. Her provider offered little help beyond a diagnosis and a drug prescription, leaving her to figure out next steps on her own. Deniece was overwhelmed.

Through an Internet search, she eventually connected with the New York City Metro chapter of the National Alliance on Mental Illness, where she accessed a range of free programs designed to support parents and caregivers like her. Perhaps more importantly, she met others who shared her experience and could offer encouragement as she sought the best possible care for her daughter.

Parents and caregivers of family members often share a shortlist of pressing needs. They lack basic information about mental illness. They need help navigating a poorly coordinated mental health system. Their hectic lives, spent balancing work and family, require flexible services to accommodate their schedules.

What parents soon discover is that they also need each other. Peer-led family support reduces feelings of isolation and shame, and gives parents the skills to advocate more effectively for their children. And when they are strengthened with knowledge and know-how, parents and caregivers become part of a grassroots leadership development program that powers the mental health community all around the country.

Parent Matching Program

One of Deniece’s first steps was to enroll in the NAMI-NYC Metro Parent Matching Program. This program connects (by telephone) experienced parents of children with mental health issues with parents of children who have been recently diagnosed or who are facing new or urgent challenges. Parent Matching offers parents the opportunity to talk to another parent who has “been there” and who can offer emotional support, coping strategies, the benefit of experience in negotiating the mental health and special education systems, and connection to community resources. This program remains one of NAMI-NYC Metro’s most popular offerings.

Family-to-Family Course

Another key step for Deniece was to enroll in a Family-to-Family course, a class for parents and caregivers whose family member has been diagnosed with a major mental illness. These weekly classes are taught by a trained family member and provide information and practical skills in a supportive environment. Course topics include: major mental illnesses and how diagnoses are made; the biology of mental illness; medication updates; developing empathy for your family member’s experience; letting go of guilt; self-care and advocacy; and how to communicate more effectively with your family member.

Lunch Hour Conference Calls

Understanding that parents are busy, NAMI-NYC Metro offers a series of lunch hour conference calls in English and Spanish, called “Your Child’s Mental Health.” This series of presentations by experts in the field provides a live presentation on a mental health topic or resource related to children. Topics have included everything from specific disorders—including ADD/ADHD and bipolar disorder—to overviews of medications, special education, summer camps, and other community resources. After the presentations, parents have the opportunity to ask questions directly of these experts, a level of access that many of them have lacked previously.

Collaborative Workshops

Organizations do well to collaborate on programs, merging their experience and expertise, especially in times like these. In partnership with the Puerto Rican Family Institute, a nonprofit family health and human service agency, NAMI-NYC Metro offers the Responsible Fatherhood Program. This free program offers a series of parenting workshops that enable fathers of all kinds—married, single or unmarried fathers, cohabitating fathers, young or teenage fathers and new fathers—to improve their relationships and reconnect with their children. The workshops focus on parenting skills, how to be more involved in a child’s life, anger management and conflict resolution.

NAMI Basics

NAMI Basics is a new education program for parents and other caregivers of children and adolescents living with mental illness. It is taught by trained teachers who are also the parents or other caregivers of children and adolescents with behavioral issues, undiagnosed emotional issues, ADD/ADHD, or other diagnoses such as major depression, bipolar disorder, oppositional defiant disorder, and anxiety disorders.

This is a free six-week course, with each class lasting 2.5 hours. All instruction materials are free to participants. The course explores a range of topics important to parents and caregivers: the trauma of mental illness for the child and family; the biology of mental illness; getting an accurate diagnosis; the latest research on the biological basis of mental illness and advances in treatment; an overview of treatment options; the impact of a child’s mental illness on the rest of the family; an overview of the systems involved in caring for children and teens and how to advocate within those systems; and the importance of record-keeping.

Saturday Support Group

On two Saturdays each month, a group of parents of children and adolescents
with a behavioral or psychiatric disorder can be found in the NAMI-NYC Metro conference room, sharing stories about the impact of mental illness on their families. This peer-run self-help group offers support and practical information in a welcoming environment. Participants share their experiences and learn coping strategies from fellow parents, in a recurring meeting facilitated by parents of children with mental health needs.

Deniece got help, for her daughter and for herself. (In fact, she was so empowered by her experience that she became a volunteer and, ultimately, a full-time staffer at NAMI-NYC Metro). The trauma and sense of helplessness that arise from a diagnosis of mental illness can be transformed by the support that only another parent and caregiver can offer. We see it happen here every day. For more information, call our Helpline at 212-684-3264.

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