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family-to-family education program

na mi

cover

“open your mind”

Compiled and Written by Joyce Burland, Ph.D., National Director

The Family-to-Family Education Program is sponsored by a charitable contribution from Bristol-Myers Squibb and Otsuka American Pharmaceutical, Inc. Coming together in partnership with NAMI to enhance human life.

NAMI Family-to-Family Education Program Second Edition ©NAMI, 2001

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table of contents 1.

NUTS AND BOLTS: Basic elements of organizing a family education class; the pre-course family visit; course description; group process skills for our model of peer family education; specific leader attributes that help in teaching family education; principles of helping families through trauma.

2.

OUTREACH STRATEGIES: Planning for success; local notice/poster; sample outreach letters; sample newspaper ads and press coverage; deadline schedule; strategies for outreach in rural areas (which are useful in any area).

3.

TECHNICAL TIMETABLES AND TASKS: Work schedules for Contact Teachers; preparation of local and state course handouts; sample handout pages; record keeping tasks; specific tasks for Program Directors and Teachers.

4.

CURRICULUM IN FAMILY EDUCATION: CLASS 1:

I ntroduction: Special features of the course; learning about the normative stages of our emotional reactions to the trauma of mental illness; out belief system and principles; your goals, for your family member with: mental illness; understanding illness symptoms as a “double-edged sword”.

CLASS 2:

 chizophrenia. Major Depression, Mania, Schizoaffective S Disorder: Diagnostic criteria; characteristic features of psychotic illnesses; questions and answers about getting through the critical periods in mental illness; keeping a Crisis File.

CLASS 3:

 ood Disorders, Borderline Personality Disorder, Anxiety M Disorders, Dual Diagnosis: Types and sub-types of Depression and Bipolar Disorder, diagnostic criteria for Borderline Personality Disorder, Panic, Disorder and Obsessive-Compulsive Disorder; Co-occurring brain and addictive disorders; telling our stories.

CLASS 4:

 asics About the Brain: Functions of key ‘brain areas”; B research on functional and structural brain abnormalities in the major mental illnesses; chemical imbalances in the brain; pathophysiology of brain cells and neurogenesis; genetic research; infectious and developmental “second hits” which may cause mental illness; the biology of recovery: NAMI Science and Treatment video.

CLASS 5:

 roblem Solving Skills Workshop: How to define a problem; P sharing our problem statements; solving the problem; setting limits.

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i


ii

CLASS 6:

 edication Review: How medications work; basic M psychopharmacology of the mood disorders; anxiety disorders and schizophrenia; medication side effects; key treatment issues; stages of adherence to medications; early warning signs of relapse.

CLASS 7:

I nside Mental Illness: Understanding the subjective experience of coping with a brain disorder; problems in maintaining self-esteem and positive identity; gaining empathy for the psychological struggle to protect one’s integrity in mental illness.

CLASS 8:

 ommunication Skills Workshop: How illness interferes C with the capacity to communicate; learning to be clear, how to respond when the topic is loaded; talking to the person behind the symptoms of mental illness.

CLASS 9:

 elf-care: Learning About family burden; sharing in S relative groups; handling negative feelings of anger, entrapment, guilt and grief; how to balance our lives.

CLASS 10:

 he Vision and Potential of Recovery: Learning about T key principles of rehabilitation and model programs of community support; a first-person account of recovery from a consumer.

CLASS 11:

 dvocacy: Challenging the Power of Stigma in our lives; A learning how to change the system; meet and hear from people advocating for change.

CLASS 12:

 eview, Sharing and Evaluation: Certification ceremony; R Party!

5.

COURSE FORMS: For teachers’ use only

6.

GLOSSARY: Psychiatric terms and definitions

7.

BIBLIOGRAPHY: Using your local library; Reference Lists

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class 1: introduction to family education TEACHING NOTES 1.

One of the important things we are modeling in Class 1 is “being comfortable” with self-disclosure. Be sure to take time to think through what you want to say in your “self introduction” on page 1.1. We are also modeling how to limit the “Saga”: Do not let yourselves go over the 2-minute time restriction here.

2.

The second main job to do in Class 1 is to draw your class into the course: This we accomplish through our hospitality and warmth from the minute people arrive until the “Thanks and Goodnight!” at the end. You might want to imagine that you are having this gathering in your home, where consideration and concern for “the guest” would be the order of the day.

3.

Be sure in the Warm-up Activity that you don’t lose time. You need to move through each section of the class without bogging down in anyone place. Keep the lecture sections going, and rev up the energy up after the break.

Your local Support Group Facilitator will attend the first half of Class 1 to meet participants and inform them about the Support Group meetings. At the end of the Warm-up Activity introductions, you will introduce him/her, which will also take a bit more time.

4.

On page 1.5, we urge people to join NAMI. Be sure to bring your state or affiliate membership forms to Class 1, and keep them out on the resource table for the duration of the course.

Anytime, in any class, when you feel it is appropriate, tell your group how valuable NAMI membership is, or disclose how much it has meant to you, personally, to be a NAMI member. Don’t wait until Class 11 to promote membership: Help your class understand how important this is as you go along.

5.

I n this new version of the course, class participants will sometimes have the actual lecture text in their Class Handouts, so they can easily “follow” what you are saying. Your Leader Notes will tell you to cue your class when this occurs.

In Class 1, the lecture text is included in Class Handouts 4, 6 and 7. Don’t be concerned if you see the class reading a handout while you are lecturing. Letting the class follow the lecture this way gives participants relief from “just listening” to lecture material.

6.

Regarding the contract: We want everyone to hang in for the whole course. The contract is clear that except for emergencies, or essential prior commitments, we want class members to stay together, and attend every class.

7.

If you don’t have a support group in your area, tell the group you might want to stay together after the course and start a Support Group.

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1.a


TECHNICAL NOTES 1.

Call your local Support Group facilitator early so she/he can plan to attend Class I. (Also, set the date for the Facilitator to attend the Class 12 party).

2.

You will need to set aside time to put the Class Notebooks together prior to Class 1. Each notebook will contain the Title Page, Table of Contents, Acknowledgements, Library Access Page, Bibliography and Glossary.

3.

Be sure to prepare: Class Handout #5: Support Group Information (Page 1.21); fill in the correct dates and names on your Course Schedule (Class Handout #9, Page 1.26); Xerox the number of copies of these Handouts you will need (Samples of these 2 pages are included at the back of this section after the Support Person Job Description, page 1.18)

4.

Get material together for your Resource Table. In Class 1 you should have NAMI brochures, your affiliate brochure, back issues of NAMl Advocate, back issues of your state newsletters, etc.

5.

Time: Get set up early in your class location. Start promptly, no later than 5 minutes after the hour.

Be sure to limit the length of time group members take during the “Goals” exercise, page 1.8. We have added a chart here so the class can “see” the 4 points. Keep them on track by referring them back to the chart points. Ask for their help and cooperation, if you need to, so you can finish on time. We want families attending the course to be our “partners” in making the course work.

6.

Note that most Agenda titles are now “announced” in the Transitions in the lecture.

7.

At the end of class, pass around the “Class Sign-Up Sheet,” so you will have the name and telephone numbers of class participants. (Be sure to list your RJS person as a class member). Add any “newcomers” through Class 3 to this list. This will be your reference “calling list.”

It will also be your class “starting list” to compare with your Final Class. Census at Class 12. This will help us keep track of drop-outs. (The Sign-Up Sheet is located in the “Course Forms” section of your notebook.)

8. Each week be sure to post the Our Belief System and Principles chart you make in Class 1.

1.b

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class 1: introduction to family education AGENDA 1.

Welcome

2.

“A Word from our Sponsors”: NAMI and our NAMI state organization

3.

Special Features Of The NAMI FAMILY-To-FAMILY Education Course Curriculum

a. 3 essential dimensions of serious brain disorders

b. Giving you “a feast of facts”

c. Developing emotional understanding and insight

4.

Learning About Feelings: Normative Stages Of Our Emotional Reactions To The Trauma Of Mental Illness

5.

Warm-Up Activity: Class Introductions Information About Our Local Support Group

(BREAK: 10 MINUTES) 6.

Our Belief System And Principles

7.

What Are Your Goals Of Independence, Or Healthy Dependence For Your Ill Relative?

8.

Understanding Illness Symptoms As A “Double-Edged Sword”

9.

Homework handouts and housekeeping

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1.c


class 1: introduction to family education INSTRUCTIONS TO LEADERS

1.e

1.

To prepare ahead and have ready for Class 1

a.  Have nametags labeled and ready; have pens and 3 x 5 cards at hand for warm up exercise; have all 3 charts ready.

b.

c. Have course notebooks labeled with each person’s name. Have extra notebooks for walk-ins. Have Class Sign-Up Sheet ready.

d.

Decide, which Co-leader will pair with a student if you have an uneven number of course participants. Be ready to introduce yourself if you have an odd count.

Have all Class Handouts you have prepared (#2. #5, #9) copied.

2.

Arrive Early To Prepare Meeting Place (chairs in a circle, or grouped around a table), Make Coffee, Tea, Set Out Cookies, Etc.

Have all Charts ready.

Put out materials on your Resource Table (State Newsletter, Local Newsletter, NAMI Advocate).

3.

Distribute Class Notebooks, Nametags And Class Handouts As Participants Come In

4.

Introduce Local Support Group Facilitator

5.

At End Of Class Distribute:

a. Homework Handouts for reading after Class 1

b. Class-Handout # 9: Course Schedule

c. Get names and numbers on the Class Sign-Up Sheet

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class 1: introduction to family education MATERIALS NEEDED CHECKLIST

3” x 5” cards and pens

Name tags

Easel with pad; big marking pen

Clock

1 1/2” Course notebooks for participants

Class Sign-Up Sheet

Materials for your Resource Table

Coffee Maker

Coffee cups, napkins, plastic spoons

Coffee (De-caf)

Cream, sugar, sugar substitute

Cookies, cakes

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1.f


class 1: introduction to family education (Co-leaders stand at door to greet participants as they enter. Give out class handouts, notebooks and nametags. Start class 5 minutes after the appointed hour.)

1

WELCOME (CO1) “We want to welcome you to the opening class of the NAMI Family-to-Family Education Course. We are very excited that this day has finally come and we can be together, family to family, for this new learning adventure.” Orientation to the Meeting Space Directions to phones, restrooms, etc. Discuss the duration of each meeting (2 hours with a IO-minute break for refreshments), and the need for a prompt arrival, so we can get started on time. Introduction of both leaders: (Take no more than 2 minutes per Co-Leader)

2

1.

Introduce yourself by name Tell them briefly why you chose to train and become a family educator.

2.

Establish your “emotional” credentials Self-disclose about the most difficult thing you’ve had to deal with regarding mental illness in your family.

CO1 goes first and covers both points. CO2 follows immediately.

Talk about yourself and your feelings, not your ill relative.

WHO WE ARE AND WHAT WE DO (CO2) “We call this part of tonight’s program “But First, A Word From Our Sponsors.” This course is taking place because of the help of two key organizations: The National Alliance on Mental Illness (NAMI) and our state organization, NAMI Missouri. Let’s take a moment to tell you about each one.” “NAMI was founded in 1979. Since that time, NAMI has grown into the foremost national advocacy organization for persons with brain disorders that cause mental illness, and their families. Over the years this revolutionary family and consumer movement has significantly influenced research and treatment policies made at the highest levels of national government, and its local affiliates have provided a haven of support and understanding for thousands of family members seeking to help their loved ones.” “On your handout NAMI is described ‘as “the nation’s voice on mental illness.” That’s absolutely right: today it is hard to imagine a world without NAMI’s vigorous and effective public advocacy. Later in the course we will tell you about one of NAMI’s current and most visionary goals, The Campaign for the Mind of America.”

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Leader note: Direct class to Handout #1: NAMI

1.1


“The program you are starting today (tonight) is now offered in 46 states, the District of Columbia, Canada and Mexico to relatives, partners, and friends of people struggling with mental illness. Over 100,000 people have graduated from Family-to-Family; it is the flagship peer education program sponsored by NAMl’s Education, Training and Peer Support Center. But that’s not all! In addition to this program, trained consumers are now teaching other consumers in the NAMI Peer-to-Peer Recovery Course, and are joining with family members to teach the NAMI Provider Education Program to line staff at public mental health agencies.” “Now, a word about our second sponsor: NAMI ______ is our state alliance, which consists of _____affiliates across the state. (Introduce your affiliate here). Our work is closely linked to NAMI’s advocacy goals, and to the support and empowerment of families. Class Handout #2 is our NAMI _____Mission Statement. Bringing you this course is a prime example of our commitment to family education.”

Leader Note: If you have special funding sources in your state, be sure to awknowledge them here.

(CO1) “Now to the next item on our Agenda. We want to tell you about the special features of the curriculum we will be presenting to you in the 12 weeks of this course.”

3

SPECIAL FEATURES OF THE NAMI FAMILY-TO-FAMILY COURSE CIRRICULUM “Because mental illnesses are disorders of the brain, we need to be grounded in some key concepts, which are fundamental to all illness processes. We call these basic illness concepts and we will be discussing two of them in class tonight.” “The first concept concerns how to ‘view’ the illness experience. So much of what we read and hear about dwells only on the medical aspects of serious illness—how symptoms are treated, what medications work best, etc. It’s easy to forget that there are other dimensions just as crucial: serious and persistent illness affects people’s hopes and dreams, and it occurs in a social environment, which responds well or badly to their disability.” “We believe there is no way for us to understand the complexities of coping with serious brain disorders without integrating the medical aspects of our relatives’ illness with the emotional and social consequences of this experience. Therefore the course will cast a wide lens, exploring the biological, psychological and environmental dimensions of brain disorders. To make this clear, we have organized the topics in the curriculum for you along these 3 essential dimensions— ‘bio-psycho-social’ view of illness.”

Leader Note: Direct class to Handout #3

1.2

process note: orient the group to the 3 columns, reading only the top line of titles down the page. then read each column down starting with the “course focus” and ending with “classes.” then read “note” at the bottom and return to the lecture below.

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“Covering all these topics means that this course will offer a tremendous wealth of factual information. Don’t worry about getting overwhelmed: each of you is looking for specific things to fit the circumstances that you are personally dealing with. We will provide a’feast of facts’, and you will take from it the ‘food for thought’ you need most. We trust absolutely that you will know best what is important for you.” “Notice one other thing: The majority of classes in the course relate to topics in the middle column—to the subjective feelings of family members and to the lived experience of those who suffer from mental illness. This emphasis on emotional understanding and insight of our relatives and of ourselves, is a theme we will return to again and again. And, for our last class, we will have a Class Party to celebrate the experience we have shared together.”

(CO2)

Leader note: Stop and ask for questions/comments from the class about the cirriculum.

“Let’s turn now to the psychological/emotional dimension (which we call ‘Learning About Feelings’), and talk about the normative stages of our emotional reactions to the trauma of mental illness.”

4

LEARNING ABOUT FEELINGS: NORMATIVE STAGES OF OUR EMOTIONAL REACTIONS TO TRAUMA “Having a brain disorder strike someone we love in our family is totally traumatic. It imposes an overwhelming burden of stress and anxiety upon our lives. Because we are dealing with trauma, we need to learn about the impact these devastating mental disorders have on our emotions. The principle of recognizing and caring about our feelings comes from a model of family education called Supportive Family Training, developed by family member professional Sheila LeGacy.” “We know we have many reactions to mental illness when it strikes someone we love. We rarely get a chance to talk: about these feelings with people ‘in the system’. But with other family members we can talk about our reactions. We can disclose how we feel, how the stress of care and chronic worry affects our lives.” “From literally thousands of conversations between family members in support groups, we know we experience intensely painful feelings and reactions to mental illness, like:” process note: write feelings down on pad as people suggest them. use list below for “coaching.” denial; fear; guilt sorrow; grief disruption of family relationships exhaustion of spirit and resources difficulty accepting the illness sleeplessness shame; anger; rage nami family-to-family education program 11/02

isolation confusion frustration depression apprehension about the future

Leader note: Ask participants to suggest some feelings they have experienced.

Co-Leader Activity: Suggest some of these words to keep process going.

1.3


Leader Note: Position chart #1 “Stages of Emotional Response” so everyone can see it.

Leader Note: Direct class to Handout #4; “Predictable Stages” so group can follow lecture.

Leader Note: Read the titles and descriptions of the 9 Stages of Emotional Response from the handout; return to lecture below to read “points”.

“What separates us from a lot of traditional thinking in the mental health field is this: We believe these reactions “are perfectly normal responses, given the catastrophes we are trying to adjust to: (Just look at all the traumatic emotions up on the board)! We believe that we have a right to our feelings, and that we need to understand and express them. So let’s spend some time learning about the predictable stages of our emotional reactions to mental illness.” “You all recognize that mental illness has had an enormous impact on your lives. What you may don’t know is that you tend to respond to this trauma in characteristic and predictable ways. Many family members and family member professionals have written about this “emotional response cycle” we all go through. It is such an important aspect of our course that we will go over it now in some detail.” “If you will look at your handout, you’ll see there are 9 separate stages of emotional reactions involved in coming to terms with mental illness in a family member. We’ve made a chart of this process, which we will be referring to throughout the course. Let’s go through the 9 emotional responses first, and then return to the “needs” in each stage.” “There are some important points to emphasize here: 1.

None of these stages are ‘wrong’ or ‘bad.’ They are normal reactions everyone experiences when struggling to cope with serious illness and trying to deal withcritical disruptions in their lives.

2.

This process is ongoing—for most of us it has taken years. The process is also cyclical; we will start it all over again every time our relative has a relapse, or suffers a serious setback.

3.

Different family members are often at different places in the cycle, which is why we sometimes have difficulty communicating with each other and agreeing on what to do.

4.

This developmental account is not about expectations. This is a human process that you do your way. If you know where you are in it you can be gentler with yourself. We think it offers hope to see that we do progress through pain and grief to acceptance.

5.

As you get to know each other better in this class, you will begin to recognize these stages and emotional reactions. In this way, ‘old timers’ help ‘newcomers’; we inform each other, we validate our feelings.”

process note: ask class, “do these stages look familiar to you?” get class reaction to the “predictable stages” concept.

1.4

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Final Point: “It is vitally important for family members to learn about these emotional responses because where we are directs us to what we need in any given stage of the cycle. For example, look at what we need when going through the hard times of dealing with catastrophe.” Read needs, pointing at chart, stage 1. “By stage 2, we are full of emotion and have a different set of needs. We need to ‘sound off,’ learn to cope, learn all about the illness.” Read stage 2 needs, ditto. “And by stage 3, we are getting it together. We need to restore the balance in our lives; we find purpose in advocacy and action; we help others. As you go through the NAMI Family-to-Family Education Course you will find the course material specifically relates to these various levels of family needs. That is why feelings are at the center of all that we do, and why ‘learning about feelings’ is a cornerstone of the course.” Transition to warm-up activity.

(CO-1) “Well, you’ve been sitting for a while and we want to move you around a bit. It’s time for class introductions, and we have a special way for you to do this...”

5

WARM-UP ACTIVITY 1. “We will ask you to team up with a person in the class you don’t know. 2.

We want you to do a short interview with each other, talking about what you’re interested in, what you do, what you like, etc. At the end of your visit together, we will ask each of you to introduce your partner to the whole group. You’ll have 3 minutes apiece for interviewing each other.

3.

We have only one rule we will ask you to follow: You’re ‘not allowed’ to talk about your relative who is ill.

4.

We’ve posted a Topic List for you to follow. We want you to say good things about yourself and ‘crow’ a little; after all, you don’t have to be modest when somebody else is introducing you!

5.

This exercise is not a memory test. If you want to, take notes about your partner on your card. Also, if you forget anything in your introduction, your partner can ‘prompt’ you. So, let’s have fun.

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Leader note: Put up Chart #2: “Topic List”; then read the following instructions.

Leader note: Read “Topic List” chart.

1.5


6. If you know your neighbor, move to a chair where you can interview someone you don’t know. I’ll tell you when the first 3-minute interview is up.” process note: when 3 minutes is up, leader tells the pairs to start the second interview. after the next 3 minutes, the leader announces time is up. Ask people to take a minute apiece to introduce their partners. a word of welcome from the leader, and applause, should come at the end of each introduction.

Leader Note: At the end of introductions, introduce the support group facilitator and refer to class handout #5.

Facilitator: take 2-3 minutes to tell about local meetings. Announce a class break of 10 minutes and refreshments. Class break: 10 minutes

6 Leader Note: Direct class to class handout #6 so group can follow lecture.

1.6

OUR BELIEF SYSTEM AND PRINCIPLES (CO1) “Now we want you to know about our belief system and principles, about how we approach this curriculum as a group of family members. 1.

We will stay on top of the resources you might need: Throughout the course, information will be made available to you about the community services that you are entitled to. We have asked one of our members to serve as a ‘Resource/ Support Person’ for this class for the duration of the course to help with your questions and offer support if you are in any kind of quandary or crisis with your mentally ill relative during this time. I would like you to meet him/her now.

introduce resource support person.

In addition, we consider each of you a valuable resource because of your own experience dealing with mental health providers. We hope that you will share these experiences with the group.

2.

We have no magic formulas: When times get bad, and we know there is no cure for serious mental illness, it is natural to look for ‘magic answers’ to our dilemmas. But there aren’t any. You have certainly done your very best to deal with the intense and frustrating problems you are presented with. We can try to learn as much as possible about brain disorders, and that’s why we’re here.

3.

We use empathy as the doorway to understanding: when we actually can grasp the lived experience of our relative with mental illness, every aspect of communication and problem solving gets easier for us. The classes will give you an understanding of what your relative needs in order to function better in the world-and what can be done to encourage improved functioning.

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As your insight increases, you will know what you can realistically expect from your family member.

4.

 e emphasize the ‘universal aspects’ of mental illness; all brain disorders involve W a profound disturbance of the central nervous system. Many of these illnesses are functionally related, and many symptoms overlap. It’s important for us to be exposed to the ‘universe’ of brain disorders to understand better the range of problems our relative may be dealing with. So, no matter what diagnosis our own relative has, we can all learn from each other’s experience.

5.

We are vigilant ‘Guilt-Busters’: The blaming of family members is the single, most devastating event in the lives of families of individuals with mental illness. As Ken Terkelson, a leading psychiatrist, has said, ‘The thought of having brought harm to a loved family member, intentionally or unintentionally, consciously or unconsciously, causes intolerable guilt’—and, we might add, pain, shame and stigma. In this course, we will focus on mental illnesses as biological brain disorders. We hope you will adopt, and insist upon, this ‘no-fault’ approach.

6.

You can’t know what no one has told you: Because of the widespread convention of confidentiality in the mental health field, many families remain in the dark for years about the true nature of their relative’ s illness. As you learn new facts in this course, you may feel that it is information you ‘should have known,’ or ‘should have gotten on your own.’ We implore you to remember that you cannot possibly know what no one has told you. None of us knew any of this stuff until someone let us in on it!

7.

You are the expert: We honor the fact that you are the best judge of what will work or will not work for your relative. And no one expects you to become perfect mothers, fathers, siblings, children or spouses as a result of taking this course. There will be no pressure to follow suggestions offered in these classes, or for you to share anything against your will. We want you to learn to trust your own instincts and take from this course what you find helpful.

8.

Be our partners in learning: The NAMI Family-to-Family Education Course is the first national peer program in America. Thousands of family member graduates tell us that family members often know more than the professionals do about coping with mental illness. As family members we get on-the-job training; all of us have Ph.D.s from the School of Hard Knocks!

Sometimes we won’t know the answers to your questions, but we’ll work together to look them up. It’s not necessary to know everything: What’s important is to know how and where to find the information you need. In this course we want to build a compassionate learning community, where we strengthen one another by being in charge of the learning process.

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Leader note: stop and ask for group questions and comments about our belief system and principles.

1.7


7

MAKING A CONTRACT (CO2) “We would like to make a contract with you. It has three parts:” First: We would like you to agree tonight to come to every class for the next 12 weeks. These classes build on each other; being together each time increases trust and continuity. Breaks in attendance affect our learning and our solidarity as a group. Second: If you have an emergency and can’t be here, please call and let us know. (Our phone numbers are on the class schedule we will be handing out). There is a lot of bonding that goes on as the course progresses. If you can’t be here, we all want to know that you are O.K., or if you have a crisis, how we can help. Third: We also ask you to agree to keep the personal disclosures shared in these classes confidential. This is a basic rule of all NAMI groups, and it makes us feel safe and protected. How does that sound? Do you feel you can make the contract?” (Ask for a show of hands, raising your own)

Leader Note: Put up chart 3: “Goals”; then read below.

8

WHAT ARE YOUR GOALS OF INDEPENDENCE/HEALTHY DEPENDENCE FOR YOUR ILL RELATIVE? (CO2) “We would like you to share your goal of independence for your ill family member, to the degree possible for that person. If someone is not comfortable with ‘independent’ goals, tell us your goal of ‘healthy dependence’.” process note: ask participants to start by: 1) repeating their name. ask them to limit introductory information by telling us only 2) their relative’s name and their relationship, 3) the diagnosis, and 4) the number of years ill. that way we can get around the circle by closing time.

Keep this process moving!

Keep people focused on the chart topics, so they won’t get into the “saga of the ill relative.” You may need to be directive; tell them, “just keep to the information we are asking for on the chart: we will tell our stories in class 3.” Transition.

(CO2) “Thank you for sharing your thoughts on your goals for your family member. Now, onto our final Agenda topic for tonight—understanding illness symptoms as a ‘double-edged sword’.”

1.8

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9

UNDERSTANDING ILLNESS SYMPTOMS AS A “DOUBLE-EDGED SWORD”

Leader note: Direct class to handout #7 so group can follow lecture.

“We want to introduce the second ‘basic illness concept’ which will be important to us in the course. This one has to do with the way illness symptoms overtake us and undermine us at the same time, striking us from two sides like a ‘double-edged sword’.” “For example, let’s take a physical illness we’ve all had. When we come down with the flu, a host of new, unwanted symptoms (fever, headache, congestion) well up and engulf the healthy self. At the same time, we are drained by symptoms, which take away personal resources we’ve always depended upon (energy, will, drive to keep going, etc.).” “The more severe the illness, the more our healthy self is overwhelmed and the more our dependable, resourceful self is diminished Also, we have no control over the severity of symptoms that attack us, and during the period we are ill, it’s almost impossible to summon up our dependable responses.” “Mental illnesses are no different except that, because they are disorders of the brain, many symptoms of mental illness are expressed as complex behaviors. When our loved ones have a brain disorder, a host of unfamiliar, unwanted behaviors appear that were never part of their personality; at the same time, many of the resourceful qualities we have always counted on are taken away.” “We want to introduce this concept tonight because, next week, we will look at the symptoms of 3 major mental illnesses, which can deeply alter the people we care about. One of the most important insights for family members to gain is to know which added behaviors and diminished responses occur in their relative’s illness, which may look to be under his/her control, but are not. This will help us learn how to separate the person from the illness.” “By the end of the course, you will be able to define very clearly how the ‘double-edged sword’ of illness symptoms pertains to your relative’s illness. Let’s see if we can picture this basic illness concept, looking at some symptoms which are common ‘early warning’ signals of brain disorders.” process note: ask class to look at the two columns. focus them on what is “added” to the person in the left column and what is “taken away” on the right.

Leader note: Direct class to handout #8.

Read the heading of the left column, then read down the text in that column. Next, read the heading of the right column, and read down the text in that column. Ask if they grasp the basic illness concept of the double-edged sword. Let class discuss this.

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10

HOMEWORK HANDOUTS AND HOUSEKEEPING (CO1) “Every week we will be giving you ‘Homework Handouts’ to read, which will go in your notebook. Some will address material we have covered in class; some will introduce material we will cover in the next class. We really encourage you to set aside time each week to go over them at home.” “We also hope you will read on your own. There is a splendid bibliography at the back of the course notebook you have. There are also instructions about how to get these books and articles through your local library. You will also find a Glossary at the back of your notebook to help with terms, which may be unfamiliar.” “We are also passing around a Class Sign-up Sheet so we will know how to reach you by phone in case we ever have to reschedule class. It would be very helpful to know your work number, too, if you have one.”

Leader Note: Ask for any questions.

“THANK YOU AND GOODNIGHT!”

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class 1:

class handouts

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class handout #3: bio-psycho-social dimensions of serious mental illness covered in the nami family-to-family curriculum (Includes Schizophrenia, Major Depression, Bipolar Disorder, Panic Disorder, Obsessive Compulsive Disorder) Note: These 3 bio-psycho-social dimensions are interdependent; 1) No one dimension can ignore the knowledge base of the other two. 2) Focusing on one dimension alone is not sufficient for recovery.

Biological/Physical

Psychological/Emotional

Social/Occupational

(Medical Dimension)

(Personal Dimension)

(Rehabilitation Dimension)

Science-based knowledge

Psychology-based knowledge

Recovery-based knowledge

Course Focus: Medical aspects of Illness

Course Focus: Subjective emotions and feelings

Course Focus: Self/Renewal

Symptoms; Diagnosis

The inner experience of brain disorders

Definition and testimonials of recovery

Normative family responses to the trauma of mental illness

Principles of rehabilitation

Future course of illness (prognosis). Acute care in critical periods Medications and medication sideeffects Adherence to medication Scientific advances in medications Early warning signs of relapse Insight into clinical realities of brain disorders Best medical strategies to maximize recovery

Telling our stories; validating family strengths Coping strategies used to protect self esteem in mental illness Empathetic listening and responding skills Burdens of different relative roles in the family

Current research on brain disorders

Handling anger, frustration, and feelings of entrapment

CLASSES; 2.3.4.6

Coming to terms with “shattered dreams�

Re-entry into Community

Sources of system/community support Restoration of social ties Long-term care Increased self-determination Maximum personal fulfillment and quality of life Problem Solving Skills (Workshop) Communication Skills (Workshop) Challenging negative stereotypes Advocacy for better services and fair policies

Self-care skills; keeping our lives going Value of peer understanding and support

Classes: 4, 5, 8, 10, 11, 12

Classes; 1. 3. 4. 7. 8. 9, 10, 12

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class 1: handout # 5: local support group information Our local support group meets on

Our meeting is located

We meet from p.m. to p.m. During this time we will focus entirely on sharing and caring.

The directions to our meetings are as follows:

For information call:

Support Group Coordinator

State or local NAMI office

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class 1: handout #8: understanding symptoms of brain disorders as a “double-edged sword� Behaviors You Never Saw Before, Which May Be Added To The Person Who Is Ill

Behaviors You Always Counted On, Which May Be Taken Away From The Person Who Is Ill

Irritability, criticalness, even abusiveness

Ability to focus and concentrate

Unpredictable over-reaction to things

Insight about what is happening

Indifference; inflexible obstinacy

Pride in appearance and personal hygiene

Irrational statements and responses

Capacity for intimacy

Obsession with own activities and pursuits; inflated self-concept

Ability to cope with minor problems

Forgetfulness and losing things Uncontrollable sadness or crying Rudeness and hostility Fearfulness and hyper-vigilance

Enjoyment of Family, friends, work Ability to exercise self-control Optimism, faith, belief in the future Warmth and thoughtfulness in relationships

Devastated by peer disapproval

Ability to appreciate people and accept their help

Disinterest in sex, or hyper sexuality

Pride in taking responsibility

Indecisiveness

Ability to express joy

Inappropriate and bizarre behaviors

Capacity to see another point of view Emotional resiliency

Wish to be withdrawn and isolated Traumatic changes in a person due to symptoms of brain disorders (mental illnesses)

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Willingness to follow a treatment plan when ill Traumatic Losses In A Person Due To Symptoms Of Brain Disorders (Mental Illnesses)

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class 1: handout #9: class schedule DATE CLASS 1: Introduction to Family Education CLASS 2: 

Symptoms of Schizophrenia, Major Depression, Mania, Schizoaffective Disorder; Getting through Critical Periods of Crisis

CLASS 3: 

Subtypes of Depression and Bipolar Disorder, Borderline Personality Disorder, Panic Disorder, OCD; Co-occuring brain and addictive disorders, Telling our stories

CLASS 4: 

Basics about brain biology and causes of brain disorders

CLASS 5:

Problem Solving Workshop

CLASS 6:

Medication Review

CLASS 7:

Empathy: Inside mental illness

CLASS 8:

Communications Skills Workshop

CLASS 9:

Self-care

CLASS 10: Rehabilitation; Making choices for recovery CLASS 11:

Fighting Stigma; Advocacy

CLASS 12:

Evaluation, Certification, and Celebration

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NAMI GUIDE