Thursday, October 7, 2010

NAMI’s Family-to-Family Educational Program: Consciousness-Changing for Caregivers

Joyce Burland, Director
NAMI Family-to-Family Program
by Joyce Burland, Director of NAMI's Family-to-Family Program

The story of Family-to-Family, NAMI’s educational program for families of people living with mental illness, is a story that has spread through the grassroots grapevine and is now the subject of several empirical studies, the most recent of which published preliminary findings in July. No other national peer-taught course has ever reached this stage of being recognized as an evidence-based practice. If we are now able to say that our twelve-week course lowers participants’ ratings of anxiety, distress and depression, it is because our volunteer work force has been so dedicated to maintaining the fidelity of a program that enables families to come out of the dark and deal much more directly with the realities that they have—a change in consciousness that would sound mystical if you didn’t know how much on-the-ground work it takes.

The journey from pain to empowerment

Caring for an ill family member can take a toll—according to NAMI’s Depression Survey, 50 percent of caregivers who responded had been diagnosed with depression themselves. I remember a mom and dad in one of my classes who brought their son living with schizophrenia to the class with them. He sat in the car with his dog while they attended Family-to-Family—a practice they utilized everywhere they went because he was too anxious to stay alone. They had not had any respite from being caregivers for over a dozen years. This couple did not know how to give voice to their son’s needs. By the end of the course they had become advocates for him. He was doing better on a new medication that they had determined from information in the class might work better; they had gotten him a case manager, and at their urging, his sister had become much more involved as a helper and friend. In Class 12 they announced they were going to take  their first vacation  away together in  13 years—a step which represented a real sea-change in their lives.

Given the isolation and silencing we experience as families caring for loved ones with mental illness, it is quite a journey from ignorance to empowerment. When families come to us, most are still immobilized by trauma and know absolutely nothing about mental illness or the existing  resources for helping their family members. In the recent study, scores on constructive emotional focusing were higher after taking Family-to-Family, as was the rating of participants’ skills related to family functioning. Many participants tell us that this effect is exponential. We aren’t just teaching the people in the room—they, in turn, are reaching out to the rest of the family.

Part of the Family-to-Family model of recovery from trauma includes a last step in which you say, “Oh, now I understand the meaning and significance of what has happened to us—what I’ve learned through my troubles can help someone else.” Years ago when the program began, I was sure of this one thing: family members would make ideal teachers for other family members. The fact that Family-to-Family will soon celebrate its 20th anniversary is a testament to the staying power, the gumption and dedication of NAMI members. Some teachers have been with us for 25 or 30 classes. Approximately 40 percent of teachers themselves live with a mental illness in addition to being caregivers. They have made the name NAMI known in local communities all over the nation by sustaining a free resource for families that does not exist anywhere else.

Training “troublemakers”

In a perfect world, relieving caretaker burden and helping families and consumers revive the joys of their lives, in spite of mental illness, would be enough. But in an era of unprecedented service system failure affecting the people we love, much more is required. In NAMI’s vital and incomparable studies of Grading the States over a period of the past 5 years, the national grade for mental health services remains stuck at D. The families we teach need help they cannot find from community clinics and providers working overtime to manage funding cutbacks further shredding the safety net which now exists. This is where the “personal gets political”, for we cannot  avoid coming clean with the families we teach that the services they require  are services they often can’t get, and to secure them we must still fight for them. That’s the reason why NAMI members advocate: That’s why we’re always fighting in state legislatures not to cut funding. We know squeaky wheels get the grease and so we encourage people to squeak. I do not consider any class I teach to be an unqualified success unless at least 4 or 5 troublemakers come forward to serve as outspoken advocates in our movement for change.

In this regard, I am always reminded of the marvelous statement by the late, great Senator Paul Wellstone from Minnesota, who spoke of his own passage after his brother became ill with schizophrenia. He declared, “It shouldn’t be this way. I wish I’d gained my understanding of this subject solely through research and ethical inquiry. But for many people, the problems of mental illness are still utterly abstract, and their urgency becomes apparent only through intense involuntary immersion in them. We need an education initiative to pave the way for a legislative one.”

A community of understanding

So we can say that over the past 20 years, NAMI family member teachers have become experts on helping other family caregivers come through this involuntary immersion and regain their footing on NAMI’s solid ground. They have created a community of understanding where the same change in consciousness occurs over and over, year after year, in town after town. As I get in the car tomorrow night to go out and teach the Family-to-Family class  in Santa Fe,  I’ll be thinking that literally 3000 other NAMI members are getting in their car to go teach their classes too. In our case it’s in a schoolroom, where 22 people will be there waiting for us to help them discover a way to help their family members more knowledgably and effectively while attending to their own needs to live a joyful and purposeful life.


Anonymous said...

thanks for sharing as this is what I am going thru now and having some problems and trying so much to make it work and asking my brother for his input and he just tells me that I am in charge and what ever the doctor says we need to follow but he isn't giving me his input as that is what I am asking him for. Thanks for opening my eyes and to help make it easier to understand.

A said...

I tell everyone that Family to Family saved my life! I had 2 sons who had fallen victim to mental illness, and other children who were baffled and worried, along with their dad and me. We are on the "other side" of those dark days and I count Family to Family as one of the most important tools which got me through. I'm now an instructor and marvel at the good that comes from the course. I count myself blessed to be involved in such an essential cause as the one that Family to Family teaches supports. (And, yes, I'm a trouble maker!)

Anonymous said...

I think Family to Family is a wonderful program. My family found it of great value.

However, I am of the mindset that there is always room for improvement.

I think it would be a benefit to the mental health community that in addition to advocacy you taught these folks how to participate in research studies and how important that is.

I do not believe the majority of users could find your research area on your website. It is rather camafloouged by so many other options. Why can it be more of a stand alone option since it is so important. Now it just blends in with other things.

Why not educate classes to use the goverment clinincal trials site, Here the studies are separated by disease state so that one can focus on only the studies that pertain to them. Many studies provide a stipend and a travel allowance. Some require participation of family members.

Each study has a review board to oversee the ethics and safety of patients. There are so many things
people are unaware of about studies.

And participation in clinical studies is such an integral part of
moving the mental health movement forward to relieve some of the suffering caused by illness with new treatments and research.

A short lesson on research studies would be helpful to include in the Family to Family curriculm, NAMI Connections, Peer to Peer and NAM Basics. Thanks for your consideration. If any NAMI employees are reading this your feedback would be appreciated.

Anonymous said...

Thanks for the article. As a F2F teacher myself it inspires me to continue my work.

Anonymous said...

Empowering the people who take our F2F classes is crucial. That also includes convincing them to pick up and teach the class when they are ready. That seems to be our need right now.
I also applaud your statement about "Legislative Education" as per Sen. Wellstone. That is such a huge undertaking and we could use more suggestions.

Anonymous said...

I think it would be a service to the whole mental health community to include research study discussions near the advocacy secion of Family to Family.

As it is the course is such a great resouce to so many families. There can be waiting lists to get in a class so I imagine more teacher are needed.

Kudos to the two instructors that are on this site. You are providing such a valuable service to many families. I always hear postive experiences about the class.

If they would have guest speakers I would volunteer to come speak of advocacy legislative and research.

Maybe they would be more open to that in the future. Take some of the pressure of the teacher to teach every week.

Has anyone suggested this. As you know, many college classes have guest speakers. Just a thought.

Thanks for the great work.

Anonymous said...

I took the course when it was Journey of Hope. What a wonderful and helpful experience. It provided much needed education, fellowship and stressed hope. My only criticism was that there was not enough (not strong enough) emphasis on advocacy. I see so many other organizations in the spotlight such as pink on everything to highlight the need for breast cancer research. The ARC did not stand still for a comment recently made by a celebrity that they found offensive. On and on -- others are strongly advocating for their causes. There seems to be little advocacy on behalf of those suffering from severe mental illness such as schizophrenia. We are missing so many opportunities - what a shame.


I am happy to be a teacher for F2F this fall. We are in our 4th week and I already feel like I have a new "family." The students know that I and my husband are learning as we teach. Thank you for the past 20 years and we're committed to the next 20!!

Mel said...

As a former student in the Family to Family program and then a teacher of the same for more than four years I can testify that the content and the ambience in the course provided my wife and I of a profound understanding of the Bi-Polar disorder.
We have been better helpers to our son and have learned to live our lives more fully as members and leaders in the Alliance.

Anonymous said...

This sounds good but I am not clear on how to access this course. Our adult son has schizophrenia and we are not getting the help we need when he has relapses. It is really disgusting how families are treated by the hospitals - just shoved off to the side, poor communications, even when there is a conservatorship. Their poor treatment is making this more difficult than it has to be. We need advocacy and professionalism, right now.

Contributors: said...

Dear Anonymous,

You can find the Family-to-Family course near you by using our website to find your local NAMI affiliate. The link at the top of any page is "Find your local NAMI" or you can use the link below.

Our best to you and your family.

stigmabuster4 said...

A, I am glad to hear about your sons. There is a serious stigma attached to individuals, like myself, who suffer with the illness. Language is a powerful thing. The media perpetuates Mental illness as a dangerous, "crazy" thing versus something that people have that can be managed. There are no quick fixes and we need to support each other. Sharing your family's success has helped and more people need to continue to do the same.I have written a book about my struggles with the disease. I had a severe break with hallucinations and then comatose at fifteen. This break changed my life at a very young age, but I have grown up to be a positive contributor to society whose purpose in life is to fight the stigma through my story! I write to save lives and programs like Family to Family as well as other support groups encourage people to become healthy and achieve a successful life on the “other side”.