Friday, March 21, 2014

NAMI Family-to-Family: Evidence Meets Experience

By Ken Duckworth, M.D., NAMI Medical Director

Over the years I have met many families who have shared with me what NAMI Family-to-Family has done for them. They have told me how much they learned, how they have been supported, and often, how much it helped their family member. I have also been told that Family-to-Family saved their lives.

When people have taken the Family-to-Family course, they know it makes a difference for them. In a world that demands outcomes, however, it is also important to show this result is due to the course, and not due to chance or the passage of time. Thankfully a team of NAMI Maryland chapters and University of Maryland researchers led by Dr. Lisa Dixon have done just that.  

First a quick review is in order. NAMI’s Dr. Joyce Burland developed Family-to-Family in 1991. It is a 12-week course taught by trained families of individuals living with a serious mental illness for other family members. The model emphasizes education, support, self-care and problem solving. It is has been used widely across the country, with over 300,000 people having taken the course, and 3,500 individuals having been certified as trainers. Family-to-Family has been translated into many languages, and has been culturally adapted and used successfully for Spanish communities in America and in Mexico and Puerto Rico (called NAMI de Familia de Familia). Today, Family-to-Family is the largest family psychoeducation program in the U.S.

Several initial papers in the decade beginning in 2000 suggested that Family-to-Family had discernable effects for the people in the course. In 2011, the first randomized controlled trial (RCT) was published of Family-to-Family, comparing the experience of people enrolled in the course and people on the waiting list as controls (they later took the course). In the Family-to-Family study, 318 individuals were assessed over a three month period on areas of coping, empowerment, and other areas of experience. The design of this study is important to understand.

The RCT is a gold standard of methodology which is designed to improve the certainty of the findings. The idea of this kind of study is to randomize a group of people eligible for the active or study arm or a control group and to follow them over time to see if the results can be attributed to the active group. The individuals doing the assessment of the impact of the course did not know if they are in the active or control group. Also, an assessment of the fidelity of the model was integrated into the study. This helps to ensure that people are getting the model when they are in the active arm of the study.

The landmark study found that the individuals in the active group of the study showed improved abilities to cope and feelings of empowerment. The control group did not show these results.  The study results did not show a decrease in subjective burden of illness—the family members knew they still faced a challenge. Results on problem solving and reduction of distress were positive but not definitively so. Further studies would help to see if that finding is a real outcome of the model.

This study led to a remarkable moment in NAMI history. The National Registry of Evidence Based Practice (NREPP) listed Family-to-Family as an evidence based practice.  This is a core achievement for the course. Research based evidence meets individuals experience in this certification.

A follow up study showed that the positive results stay with people who took the course. In 2013, Lucksted and colleagues followed up with the same population data set that interviewed individuals at different times. They concluded that “all benefits of Family-to-Family were sustained at nine months” including reduced anxiety improved problem solving, improved coping and knowledge. They also noted that increased attendance led to better outcomes.

Family-to-Family has been a great addition to the world of mental health services. Families often report they experience feeling left out of care, or that communication is inadequate from mental health professionals. These studies demonstrate the impact that Family-to-Family can have to improve how the family copes and functions.  Policy makers and professionals have begun to take notice. Looking at how the course impacts the individuals who live with serious mental illness and how to use this program in the digital age are important areas of future research.

If you love someone in your family who is living with schizophrenia, bipolar disorder, depression or obsessive compulsive disorder (or related disorders) consider taking this important and scientifically validated course. Contact your NAMI Affiliate to find out where it is being given. It’s free, and thanks to these studies, we know it works.

 

 

13 comments:

jbelle said...

Just got back from a panel where I spoke about what it is like to have a loved one with a serious Mental Illness. All four of us had gone through the course. Two of us were teachers and trainers of the course. Having taught 10 classes, I must agree that this is a life changing event and no evidenced based study needed to tell me or my participants that. But I am proud that this program has earned that title and I will continue to promote its effectiveness and necessity.

jbelle said...

Just got back from a panel where four graduates of F2F spoke about family perspectives when a loved one has a mental illness. Two of us are teachers and trainers of teachers for the course having taught more than 10 classes each. I can't agree more that the course is a life changing event and it doesn't take a scientific study to tell participants and us these results. I am proud to be part of what is now an evidenced-based program.

WANTING ANSWERS said...

I attended Family to family - it seemed like a whole room full of people like deer, caught in the headlights. My adult child is extremely difficult and my life is in financial ruin. I am a single mother of an adult child with so many mental problems I cannot even begin to explain. He is extremely intelligent and I have no control over his care, which is no care as he doesn't at all trust the mental health care community. Actually I have little or no trust myself. There were no answers for concrete problems like "How do we sustain the life of our child as we grow older?" Are there grants to financially aid families like me? These are the things families need help with! I and many others can accept our child's illness - but how do we survive financially? How do we see that they are not left to struggle on the streets when we die? Are there programs that can assist our children in acquiring jobs and maintaining them? Where can they go to trouble shoot with other people like themselves without it costing a fortune? Even a little money is a fortune when struggling financially. These are the problems that if solved, would relieve stress for the families and those affected by mental illness. The only way I can insure my child will be taken care of when I die, is to die before my life insurance becomes void at age 80. I need help with practical life problems. How can I provide housing for him when property owners don't want to deal with a situation where a parent is paying the rent? It just goes on and on!!!!

Anonymous said...

To wanting answers. I can understand your frustration in wanting answers to all your questions, most of us have been there. What we have discovered is that it is a life long journey of finding answers to some very complex challenges with our lived ones whose thinking iand problem solving skills are not aligned with ours. May I suggest that you navigate through the Nami program or meetings as you will have an opportunity to meet many knowledgable people who can help you navigate through the myriad of questions and provide guidance. Best of luck

Anonymous said...

Myself has clinical depression unable to take meds due to medical problems I have alot of anger in me.trying my best to use coping skills,or just take a trip some where,I don't like talking to family members they are judgemental about mental issues

Anonymous said...

Dear Wanting Answers,

You may want to talk to your adult son about applying for Social Security Disability if he is unable to provide for himself financially.
There are may also be some medical coverage that he will qualify for if he is unable to work. You can contact you local hospital and ask about this type of insurance and how to apply.
In Massachusetts there is Masshealth.

My son was 39 when we sat down and discussed the fact that he needed to consider disability. He is also very intelligent and struggled for years to work. He cried but we explained that we could not cover all of his needs financially after private paying for quite sometime like many do..

You can find a lawyer who specializes in Social Security Disability Law and ask him or her for a consult with your son. They do not get paid unless they win the case and they will then take a percentage.
Our lawyer handled my son's appeal.
I tried to file without one and did not do a very complete job.

You can also contact your local transitional assistance office. Your son can apply for food benefits and some financial assistance. It is not a great deal of money but you are right about every little bit helps.

They can refer your son to help to find employment and training for your son, if he can work. In mass it is called massachusetts rehabilitation (mass-rehab)

Call you city clerk and ask about where public housing is located and then apply for public housing and encourage him to apply. It may be a wait but at least you can get your son on the waitlist.
We did this after my son received his social security disability.

Sometimes there are housing services offered where mental health services are available. You can ask them to direct you to housing services.

Ask them how you can apply for Section 8 housing that provides rental assistance. There also may be a waitlist but you can get your son on a waitlist. We also did this after he received Social Security Disability.

I remember when my son curled up on my backseat crying saying there is something wrong with me but I don't know what.

He was hospitalized and evaluated when a therapist he was seeing actually took him to the hospital.
He was sending suicidal text messages. I was private paying for the therapist and the psychiatrist. They both supported my son's disability case and provided their records when my son signed a release of information for the lawyer.

My Son learned that he was living with bipolar disorder, adhd and a personality disorder.. At least he/we knew what the illnesses were that he is living with.

Mental Health treatment is tricky.
It might take a while to find the right match for him but don't give up! You can ask if he will sign a release of information so that you can be involved with his treatment.

Right now my son is trying to find a lasting relationship with a psychiatrist after his long time psychiatrist retired. It hasn't been easy but the new therapist he is seeing seems to be someone he can really talk to and he appears to be comfortable with her.. Sometimes they will need to see more than one to find a good fit.

It is good for you to find a support group NAMI offers them in many areas do a search at www.nami.org or call your local affiliate. You local NAMI affiliate will also be able to help direct you to resources.
There are also peer support groups where your son can network.

Never give up hope! Write letters and call you representatives. Let them know that you support Excellence in Mental Health Care.
We must stay united and demand that mental illness receives the same care and treatment as other illnesses.
Just go to nami.org and look for advocacy..

I am a Family to Family Teacher.
Hope this information is helpful.

Our local affiliate just presented a talk on how to work with a disability.

Please try calling your local affiliate and ask if they can help you. I am sure they can offer some resources. Our NAMI affiliate has a resource guide that was shared with our Family to Family course attendees..

Stay strong,
Ella

Ocean Breeze said...

I highly recommend Family to Family class. The 12 week class has helped me more than years and years of therapy combined. At times, it was overwhelming and unbearable to stay on painful subjects for hours at a time. And in the end, that was exactly what I needed. Unlike one to one therapy, I had no choice but to stay on course and face the facts and not divert to other subjects when it became too painful. I have never been in a situation where I constantly felt stark naked in front of so many people. No amount of make up and hair could hide my pain in front of my class mates. For the first time in my life, I stopped trying to hide behind my false facade. It was no use. I couldn't shake the feeling that everyone in the class room knew exactly what I was going through. At times, it felt like going to a funeral every Thursday night. And each time, the funeral was for same person, my sister who is very much alive and yet, extremely ill. I want to take the same course again since I missed a couple of classes. Many thanks to the instructors for their unwavering effort and dedication to us. And to my class mates for having courage to face and confront this very unfortunate reality.

Anonymous said...

Congratulations to NAMI, its 35 years of hard work is beginning to reveal some of its wealth in wisdom, and NAMI Family-to-Family is standard worthy of this study and the subsequent recognitions. A fine jewel in your crown...

I'm holding to hopes that the NAMI Peer-to-Peer program is in que for some rallies, celebrations, and recognitions too for its astounding engagement of mental health consumers to seek out paths of recovery.

nina said...

Family to Family (F2F) is geared for caregivers. It is stated that we don't have the answers and we're not doctors. "I don't have control" is universal in this journey and F2F gives insight to this ongoing dilemma. There is a balance of advocating and letting go. Different for each of us. F2F provides tools through education. Unfortunately there is no one answer and far from being fixed the way we'd like it to be fixed. I have come to learn that it becomes my problem when I try to control too much. I have to continually ask myself 'am I doing this for me or for my loved one who has serious mental illness?' Being validated is huge as we purge through unrelenting challenges. I pray for compassion and resist comparing. I'm in the boat with you as so many are. F2F has been a life jacket and a blessing. Thank you to all the many NAMI volunteers. We couldn't do this without you!

My Genes said...

^^^^ Sorry to hear that. Unfortunately mental illness can and will rock the family turning it flat on its back. I am single mother myself and I am struggling with the same questions you have and have made it a mission to become an expert in the field so that I can maneuver my way through the system and get my 20 year old all the help he needs. There are times when I think of putting him in a residential home so that I can focus and do what I have to do but it breaks my heart to think that if I did he will probably be worst off. My son is a paranoid schizophrenic, handsome, friendly and charming but can't cope and can get himself together and work; he is cognitively impaired. My father is also a schizophrenic and my mother is something, don't know what but she too is getting a check. So instead of crying (well I did all the crying I could already) I am focusing on getting myself together and hopefully I will be able to save enough for my son to live a comfortable life when I die. That is all I think about. I got an BA in psychology and will gear up to get an MSW or a PsyD to make sure I am prepared to advocate for him. The best advice that I can give you is to try to change your mind set and push through; make calls, look up every organization possible, get involved. They might not offer financial assistance but could provide you with leads of who can. Also, be prepared to change yourself. Through a newly acquired and positive mindset you will gain the energy to think outside of the box. I am broke but I am not letting that deter me from what I have to do which is make it to keep him safe and in the process educate and inform others. Because of my background I find that I am helping others in the group. Answering questions and elaborating on the course topics. For me is more of a brush up course than anything but I am still getting some out of it which is basically getting peer support. No matter how much I know the feelings and emotions are there and a hug goes a long way. Hopefully this note my offer you some energy, and if so, go online and do your research. Look up housing programs if you are struggling to pay your rent or hook up with a social worker to find as much resources possible for him. And, also take time to take care of you. If you like getting your nails done, or getting the hair done, take the $20-40 dollars and get it done. There is nothing worse to try to work through all these things and feeling like you've lost your loved one and yourself. Get focused, get grounded and insists all you can and you will see that things will slowly start falling into place, and if not, at least you are doing something other than feeding your pity. Once you go everything else goes so try to grab hold of yourself and plow through.

Anonymous said...

Wanting answers is so right on. I feel for her and her son. We need more group homes with dignity and care and housing. No one ever told me it would be OK. I have been homeless for 20 years and don't see much of an improvement, except once when I was in Arizona. Go to a state where they have more help. Good luck to you and my thoughts are with you.

Mary

Diana Stinson said...

I agree with Wanting Answers... we too have struggled financially and had to pay our adults sons expenses, plus many fines posed by the justice system due to issues when he was manic. If you try to use hard love, meaning not help, he ended up homeless and helpless. His disease was continuously causing issues with his relationships and in some cases his relationships with crazy women only made his bipolar more difficult to deal with. The financial burden of keeping up his family or might I say families. He fell for the wrong women, they cheated on him and even almost had him killed. The financial burden and drama has been ongoing for over 20 years. A long term job was out of the question, although he worked for a contractor that paid him without taking out any taxes for over 10 years which caused him financial issues with the IRS. We have paid $1000's in fines for trumped up charges that were all due to his delusional and hallucinatory state of mind. He has never been violent except to protect himself from attackers. Now he has lost his civil rights and is involuntarily confined to an institution. His two children that he tried desperately to stay with and take care of are being subjected to really bad people and he cannot do anything to help them. Oh well, they say family evidence based - but I have provided evidence over and over again that he is not violent and is currently as sane as the next person. He has been stabilized on his medication and will never quit taking it again. Yet he is caged up like a wild animal and my worst night mare is that they will keep him so long that he won't be able to adjust to living in the community. However, he says he will not become institutionalized. He needs job training, housing and continued out patient services, but his treatment team says there is no job training for mentally ill, no future housing programs for him and his children, although he will be court ordered to continue outpatient services - that is if he ever gets out of a very unnecessary long term hospitalization. Even Medicaid won't pay because it is not medically necessary - therefore the Virginia tax payers are paying for his stay. I don't know if anyone will read this or if anyone cares about the family issues that a mentally ill person creates in all aspects of our lives. There needs to more outpatient support and people who are regulated on medication do not need to be kept against their will. After all, this is America.

Terri OBrocki said...

Hello "wanting answers", I am so sorry that you feel overwhelmed with your situation. I am new to the community and am a consumer who wants to help make some of the things that you mentioned accessible to other consumers and family members. Unfortunately, I don't have the answers yet. I can say that I am passionate about these issues and plan to investigate them. The most important thing is to be involved. You stated that you attended one of the F2F sessions. Did you speak with anyone there about your concerns? You may have to head a committee to look into the issues you mentioned. No one will know unless you put it out there. Thank you for your post. I pray support will come your way soon.