“I can now see that my loved one and their mental illness are separate.” I was fortunate to hear this powerful insight recently from one of NAMI-NYC’s participating family members. The National Alliance on Mental Illness of New York City (NAMI-NYC) is built on the transformative power of family-to-family interventions when it comes to caring for and supporting someone living with mental illness.
It’s remarkable what family-to-family interventions can achieve. By learning more about their loved ones’ mental illness, why they may behave in certain ways, and how to assist, caregivers create positive associations about their relationship and can approach it with more resilience.
Many studies have shown that the burden for caregivers of the elderly, people with disabilities, or those living with severe mental illness can be great. And while interventions may not change that burden, they can transform the caregiver’s ability to cope. Family-to-Family is among NAMI-NYC’s many free classes, support groups, Helpline, and other resources. It’s an 8-week class for families, significant others, and friends of people living with mental illness.
In an academic study of Family-to-Family, this program increased empowerment, knowledge, and coping skills as well as reduced stress among caregivers. In a phone interview, study participants were asked about their caregiving experiences. Among their negative experiences were managing difficult behaviors, stigma directed at them or their family member, and encountering problems with mental health services. Caregivers also had positive personal experiences, including valuing the good aspects of their relationship with their loved one. After participating in the course, caregivers learned more about their loved ones’ situation and reported more positive experiences. More positive associations reduced the caregiver’s distress and improved family functioning.
We know this works not only from the individuals and families we serve, but because we have had such experiences ourselves. Many of our staff and Board members are family members caring for a loved one with mental illness and being a part of the NAMI-NYC changed their understanding of mental illness and their lives. One of our longtime staff members, who has been with the organization for over a decade, was first recommended NAMI-NYC during a doctor’s visit with their relative. Although she was shy in this new environment, she took the Family-to-Family course and attended our Family and Friends support group. She kept coming back because she was with people who really understood what she was going through. With this learning and community around her, she came to the realization, “It’s hard for your family member to change the way they think because their brain won’t let them. We have to change the way we approach them.” Today, she is more understanding of her relative living with mental illness and knows it’s not their fault. These lessons were passed on when she persuaded her siblings and other family members to take the class. Today, she teaches that very class, Family-to-Family, offering the power of knowledge, family acceptance, and a better quality of life for everyone involved.
We are also fortunate to have Board Members who share such understanding from personal experience. One Board Member came to NAMI-NYC because of his son’s experience with psychosis. He and his partner didn’t know much about mental illness or what their son was experiencing. They were at the whim of the medical system. He felt helpless especially when his son was having an episode. Someone recommended NAMI-NYC. When he and his wife attended the Family-to-Family class, they came away with tools to help their son and themselves. He learned about the stages of illness, what to expect, how to communicate through an event, and how to deescalate. He also learned how to listen to his son not with the intent to answer and resolve the problem, but to understand what he was going through. “NAMI-NYC has changed the relationship that I have with my son for the better. Instead of trying to tell him how to recover, I have learned to empathize with his recovery and how hard it is. It really allowed a lot more love, empathy, and understanding in our relationship. Our relationship became much better.”
Family psychosocial education not only reduces stigma, blaming, and misconception about mental illness, but can significantly reduce relapse and hospitalizations. In studies of inpatient settings, staff who communicated with family about a loved ones’ health, mental health, and discharge planning had higher aftercare involvement. Family phone calls and visits, family therapy sessions, and overall communication with staff improved follow-through on outpatient appointments. Taking this one step further, family-focused recovery means that family members not only help in their loved ones’ recovery but receive support themselves. When providers or community organizations talk to families about mental illness, it breaks through the shame families might feel, sparks conversation, and equips them with much needed caregiving tools.
Family involvement, much like in the Family-to-Family course, means greater understanding of mental illness and other critical information like how to identify warning signs, prevent hospitalization, and knowledge of available services. While much focus is often placed on people living with mental illness themselves, family-to-family interventions in healthcare and other community settings can enhance care and quality of life for everyone.
Matt Kudish is the Executive Director of the National Alliance on Mental Illness of New York City (NAMI-NYC), a non-profit centering family and peer support for 40 years. Learn more at www.naminyc.org/findsupport or visit your local NAMI affiliate.
Haselden, M. (2019). Family Involvement in Psychiatric Hospitalizations: Associations with Discharge Planning and Aftercare Attendance. Psychiatric Services. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6773477/
Kopelovich, S. (2021). Community Mental Health Care Delivery During the COVID-19 Pandemic: Practical Strategies for Improving Care for People with Serious Mental Illness. Community Mental Health Journal. 57:405-415. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7304659/
Toohey, M.J. et al. (2016 Feb.) Caregiver Positive and Negative Appraisals: Effects of the National Alliance on Mental Illness Family-to-Family Intervention. J Nervous Ment Dis. 204(2): 156-9. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4734139/
Waller, S. et. al. (2019). Family-focused recovery: perspectives from individuals with mental illness. International Journal of Mental Health Nursing, 28, 247-255. https://onlinelibrary.wiley.com/doi/epdf/10.1111/inm.12528