Women Be Healthy

A Curriculum for Women with

Mental Retardation &

Other Developmental Disabilities

Facilitator’s Manual

Original Authors:

Yona Lunsky, Ph.D., C.Psych.

Centre for Addiction and Mental Health

Dept. of Psychiatry

University of Toronto

Amy Straiko, B.S.

Medical School

Wright State University

Sharon C. Armstrong

Nisonger Center

The Ohio State University

Revisions by:

Susan M. Havercamp, Ph.D.

Center for Development and Learning UNC-Chapel Hill

Cathy Kluttz-Hile, RN, CDDN, BSN, M.A.

Specialized Services Unit

NC Division of Public Health

Pam Dickens

NC Office on Disability and Health

UNC-Chapel Hill

Layout by Jennifer Snow, NC Office on Disability and Health

The North Carolina Office on Disability and Health

Frank Porter Graham Child Development Institute

University of North Carolina at Chapel Hill

Women Be Healthy is a revision and elaboration of the Nisonger Center Women's Health Group Facilitator's Manual by Yona Lunsky, Amy Straiko, & Sharon C. Armstrong, The Ohio State University Nisonger Center (2000).

This publication was made possible by a grant from the Centers for Disease Control and Prevention, National Center on Birth Defects and Developmental Disabilities. (U59/CCU403365-12)

The North Carolina Office on Disability and Health is a partnership effort of the NC Division of Public Health of the Department of Health and Human Services and the Frank Porter Graham Child Development Institute at The University of North Carolina at Chapel Hill to promote the health and wellness of persons with disabilities in North Carolina.

Please cite as follows:

Lunsky, Y., Straiko, A., & Armstrong, S.C. (2002). Women Be Healthy: A curriculum for women with mental retardation/developmental disabilities. [Revised by S.M. Havercamp, C. Kluttz-Hile, & P. Dickens]. Chapel Hill, NC.

Copies can be ordered from the NCODH website at http://www.fpg.unc.edu/~ncodh/

Alternate formats are available on request.

For additional copies contact:

The North Carolina Office on Disability and Health

Frank Porter Graham Child Development Institute

Campus Box 8185 Sheryl-Mar Building

Chapel Hill, NC 27599-8185

Fax 919-966-0862

00 copies of this document were printed at a cost of $0,000.00 or $0.00 each.

CONTENTS

Preface v

Acknowledgments vi

Introduction and How-to vii

Curriculum

Week 1: Introduction to Group/What is a Healthy Woman? 1

Week 2: The Body and Outside of the Breast 9

Week 3: The Inside of the Breast 20

Week 4: The Outside Parts of the Pelvic Area 28

Week 5: The Inside Parts of the Pelvic Area 37

Week 6: The Doctor’s Office 45

Week 7: The Pelvic Exam 50

Week 8: Women’s Health Review Game and Party 59

Appendices 65

A. Women Be Healthy Supply List 67

B. Women’s Health Resources 69

C. Sample Schedule 71

D. Physical Activity and Persons with Disabilities 72

E. The Food Pyramid 74

F. Healthy Snack Ideas 75

G. Jobs for Health (Weeks 1-5, 7) 76

H. Breast and Cervical Cancer 83

I. Women’s Preventive Health Guidelines 85

J. The Best Bra Fit 86

K. Breast Health Access for Women with Disabilities:

BSE Instruction Protocol 88

L. Progressive Muscle Relaxation Exercise Instruction 89

M. Common Infections in Women 91

N. PMS Symptoms 93

O. Sample Menstrual Calendar 94

P. Things You Need to Know for the Doctor 95

Q. Certificate 96

R. Sexuality and Disability Resource List 98

S. User Satisfaction Questionnaire 111

INTRODUCTION AND HOW-TO

Group Composition

Participants

The Women’s Health curriculum is designed for adult women with mild to moderate mental retardation. It is imperative that these women possess sufficient receptive and expressive communication skills to comprehend the instructional material and participate in role-play situations. Furthermore, participants must be able to understand that a role-play situation is make-believe. While some aspects of the curriculum could be modified to meet the needs of women with more severe disabilities, the curriculum as a whole is not designed for this purpose.

Participants must choose to participate in the groups voluntarily. No one should be coerced or forced into attending the group meetings. In addition, group members should be free to stop attending the group at any time by their own volition.

A group size of six to eight participants and their natural supports is ideal. This size group allows for good discussion without any single person monopolizing conversation. Smaller groups are vulnerable to absenteeism whereas larger groups may become unmanageable. It is extremely important that staff or family members attend group meetings with participants. This makes it more likely that participants will remember what they learned in natural settings. It also gives the participants someone with whom they feel comfortable discussing health concerns. The staff or family members must make the commitment to be present at all sessions. Consistent group attendance is an essential part of maintaining an open and trusting environment.

Facilitators

In addition to participants and their supports, groups should be led by two facilitators. Many group sessions include role-plays in which two facilitators model appropriate and inappropriate solutions to problems.

Although no formal education or training is required to be a facilitator, there are crucial features that enhance a facilitator’s success in running these groups. Given the composition and content of the group, both facilitators should be female. Group members are likely to feel more embarrassed in asking questions and might be less receptive to information provided by a male facilitator. A potential facilitator must enjoy working with women with mental retardation. She must be able to elicit participation of members, listen attentively when others are speaking, and foster a supportive environment. It is very important that the facilitator be comfortable discussing her own body and health issues. Much of the material discussed in the class is of a sensitive nature, and facilitators should be able to maintain confidentiality and provide appropriate feedback. Finally, the facilitator should be able to coordinate the group’s activities and effectively convey the educational topics introduced.

Group Atmosphere

To enhance participation and retention of the information provided in this curriculum, the group must be perceived as pleasant and supportive. It should be a forum in which questions and concerns can be shared among facilitators, participants, and their natural supports. Staff and family members should be encouraged to participate openly from the initial session onward.

The facilitators should be aware of and sensitive to the fact that many women with disabilities have been and continue to be victims of sexual abuse. It is important to recognize when a group participant is uncomfortable with the curriculum for this or any other reason. In the event that a facilitator suspects that a group participant is currently undergoing abuse of any type, further discussion/follow-up with the individual and their supports (as appropriate) should occur privately.

If a member of the group reports finding a breast lump or any other symptom indicative of illness, the facilitator should also engage the individual and their supports (as appropriate) in further discussion/follow-up privately.

It is recommended to end the curriculum with a review of the contents and a game, in addition to a party to which women are asked to bring healthy snacks for the group. This review should consist of a brief discussion of the material taught in the curriculum followed by a game, a fun way to assess and improve retention of these concepts. Women Be Healthy ends with a party as a way of congratulating the participants on a job well done. The party is also a nice way for the participants to say good-bye or make future social plans with one another.

Setting

Group meetings can be held in any setting, except for the visit to the doctor’s office on Week Six. It is most effective to hold the groups in a room large enough to comfortably seat 12-16 individuals. This room should be a private place free from outside distractions such as noise from other individuals, activities, or electronic devices. A circular seating arrangement in an open area of the room is ideal.

The visit to the doctor’s office should be held, if possible, in an actual examination room at a doctor’s office or clinic. It is useful to travel to a doctor’s office that is easily accessible and located near the usual group meeting place. It makes the most sense to approach a medical provider who is interested in accepting women from the groups as potential patients or who is already providing care for some group members. This visit is discussed further in Week Six of the curriculum.

Schedule

The curriculum is divided into eight weekly 90-minute sessions. Days and times for the meetings should be scheduled to accommodate the participants as much as possible. Groups in North Carolina were held in the early evening at the office of a residential agency and in the morning at a sheltered workshop setting. If held in the evening, it is important to allow enough time to relax and have dinner after work without extending too far into the night. If held in during work hours, a commitment must be made by the women and their employers that the women can be freed from work responsibilities during the group time.

Preparation

Each session requires certain props and materials. Prior to each session the facilitators should ensure they have all items they will need for that day. Each week’s lesson indicates the props and set-up required. Kits with audio-visuals and models are available to borrow from the NC Office on Disability and Health. They may be checked out for ten weeks at a time. Please contact NCODH at (919) 966-0871 or email: odhpubs@mail.fpg.unc.edu to schedule the use of a kit.

Attachments

There are several attachments to the facilitator’s manual that are intended to provide information to assist the facilitator with curriculum content. In the event a facilitator feels the need for more background information, she should feel free to contact agencies such as the American Cancer Society, local Public Health Department or the National Institute of Health (for additional resources see Appendix B).

CURRICULUM STRUCTURE

The following educational strategies have been employed in teaching the material included in the Women Be Healthy curriculum:

1. Instructional content

2. Visual aids

3. Discussion

4. Role-play

5. Relaxation techniques

6. Jobs for Health

7. Feedback and praise

These educational strategies were chosen to enhance the acquisition of new skills and to reinforce existing skills. Due to the importance of these techniques, each strategy is discussed in greater detail below.

1. Instructional Content

The facilitators begin each meeting by introducing the session’s topic and reviewing Jobs for Health from the previous week. Facilitators should succinctly present information and use direct, probing questions to elicit answers. Review and repetition of material are also crucial, since many of the women will encounter terms they have not heard before.

Note: In the curriculum, instructional content that should be spoken by a facilitator is italicized, whereas regular type-face denotes instructions to the facilitator.

2. Visual Aids

A listing of videos and props for each group meeting is provided at the beginning of each session of the curriculum.

Visual aids are an extremely important part of this curriculum. These aids are a crucial way of teaching the concepts in as concrete a manner as possible. Two excellent videotapes used in the curriculum are The GYN Exam Handbook, published by James Stanfield, and Let’s Talk About Health: What Every Woman Should Know, published by The Arc of New Jersey. These videotapes are available in the kits that can be checked out from the NCODH or they may be purchased from their respective publishers (see Appendix B).

Facilitators should briefly introduce the content of each video segment and allow time after viewing for discussion. Furthermore, it may be helpful to play the entire segment again after each step has been discussed. If the video segment is too long (more than 3 minutes), many individuals lose interest or have difficulty processing the information contained in that segment. To facilitate the processing of information, periodically pause the videotape. The facilitator should then refer to the image displayed on the television screen to review what has happened and point out relevant details.

Video vignettes are denoted by the video cassette icon shown here.

In addition to the videos, anatomically detailed dolls, a pelvic model and anatomical pictures or posters are recommended. These are also included in the kits that can be checked out from NCODH. If the instructor is comfortable with drawing, an easel with flip chart paper can also be used. This manner of introducing the concepts covered in class has proven to be quite effective, as well as engaging for the participants. Using symbols or drawings is particularly important for those women who have reading difficulties.

Facilitators are encouraged to be creative and seek out resources from their community, which are often available at little to no cost and have excellent teaching value. It is important that supplementary fliers from such agencies as the American Cancer Society and Planned Parenthood be of low literacy level to accommodate those individuals with reading problems. In North Carolina, group content was supplemented with materials from the American Cancer Society and the National Institute of Health. These materials were distributed to the women to take home and encouraged to review with their supports at home.

Finally, facilitators are encouraged to obtain breast models and other props involved in the gynecological examination such as a speculum, cytobrushes, spatula, and medical gloves. These items are included in the kits available to borrow from NCODH. They may also be borrowed from the local health department, American Cancer Society or physician. This allows progressive exposure to exam tools and hands-on teaching of skills. Many of these materials are available at a standard medical supply store if the facilitator is willing to purchase them. For information on obtaining breast models, see Appendix B.

3. Discussion

Discussion is an integral component of the Women Be Healthy curriculum. It is a great way for participants to become involved in the curriculum, instead of being passive learners. Throughout the curriculum there are example questions for facilitators to use to initiate discussion and participation about a variety of subjects. Facilitators are encouraged to use the flip chart as a way to acknowledge and record participants’ ideas and suggestions.

Discussion questions are denoted by the flip chart icon shown here.

4. Role-play

Role-playing is an invaluable tool in teaching assertiveness and empowerment in the medical environment. Role-plays are “make-believe” situations acted out by participants and facilitators. It is often helpful for facilitators to demonstrate inappropriate or ineffective ways to solve a problem or ask a question. Common mistakes might be to mumble, avoid eye contact, ask vague questions, or complain of vague symptoms (e.g., “it hurts down there”). Group members are then asked to point out mistakes made by the facilitators and to generate correct, adaptive solutions to the situation. Following that feedback, the two facilitators model an effective strategy and participants are encouraged to act out appropriate role-plays amongst themselves, with staff, or with facilitators.

To enhance learning, role-plays should be as personalized as possible. For example, if a woman has had frequent yeast infections, she should practice telling her doctor or staff that she has been experiencing the symptoms associated with the infection and asking for help in that situation. Although the role-plays are make-believe, making the situation as real as possible facilitates retention of these skills. Props may also be used to increase realism.

Role-plays present an excellent opportunity for facilitators to provide feedback to the participants. When role-plays are correctly enacted, participants should be warmly praised. If incorrectly rehearsed, the role-play should be interrupted and the woman provided with gentle corrective feedback. Role-plays should then be re-enacted correctly by the participants. If further assistance is necessary, the facilitators may act out the scenario or provide coaching. It is important for the participants to practice the correct way to solve the problem.

Role-plays are denoted by the clapboard icon shown here.

5. Relaxation Techniques

Relaxation techniques are an integral component of the Women Be Healthy curriculum. Women are gradually taught concepts such as deep breathing, relaxed posture, and guided imagery. These concepts are taught using concrete objects such as a feather to enhance learning. It is imperative that women learn to practice these skills outside of the group environment in contexts in which they feel nervous or uncomfortable. Facilitators can help the participants to relax by using a soothing tone of voice and ensuring a quiet atmosphere during these techniques. Participants and staff should be discouraged from giggling or otherwise interrupting the relaxation time. It may help members to shut their eyes or be gently reminded about remaining quiet.

In the curriculum, relaxation exercises are denoted by the yoga icon shown here.

6. Jobs for Health

Jobs for Health are given for each session. In addition to allowing group members to practice the skills learned in class, practice assignments enhance generalization of these skills to other settings outside of class. Facilitators should present Jobs for Health as briefly and as simply as possible. An opportunity to discuss the previous weeks jobs and to provide feedback is provided at the beginning of each session. Jobs for Health are provided in Appendix G.

Jobs for Health are denoted by the clipboard icon shown here.

7. Feedback and Praise

Facilitators must take an active role in rewarding and praising the participants at every opportunity. Constructive and supportive feedback will enhance learning and ensure that the sessions are perceived as pleasant and positively reinforcing. Praise should also be provided by natural supports, or by the group members themselves. It is important that participants feel supported and not ridiculed. Making feedback as specific as possible further enhances learning.

CURRICULUM FORMAT

As previously stated, the curriculum is divided into eight 90-minute sessions with a break during each weekly session. The sequence of sessions was selected to allow gradual exposure to the various concepts and should be modified with care, if necessary, to accommodate your group. Specific sessions (such as the doctor’s visit) may be changed or dropped according to the availability of resources. Although facilitators may be tempted to disregard information that seems repetitive, the truth is that repeated instruction is necessary for learning many of the topics.

Week 1:

Introduction to Group/

What is a Healthy Woman?

Props needed:

C· Folders to hold papers from group

C· Handout with schedule of group dates/times/location

C· Nametags and markers

C· Easel with flip chart paper

· Mural Supplies

C- Paper or poster board

C- Laminated pictures (from kit) or pre-cut magazine pictures of healthy activities

- Tape

C· Feathers

C· Anatomically detailed dolls (male and female)

C· Handouts

- Healthy snacks

- Food pyramid

C- Physical activity

C- Jobs for Health

Set-Up:

Prior to the first class, the instructor should obtain and pre-cut pictures of healthy activities for making the poster or use the laminated pictures from the NCODH kit.

1. INTRODUCTIONS AND WELCOME:

Facilitators should begin the first group by introducing themselves, welcoming group members, and briefly introducing the women to the goals of the group.

These goals are:

1. Learning how to take care of our bodies,

2. Learning about going to the gynecologist,

3. Learning how to calm ourselves down when we feel nervous going to the doctor’s office,

4. Learning about breast and cervical cancer early detection, and

5. Learning to take greater responsibility for our health.

All women and their natural supports should introduce themselves. It can be helpful for facilitators to model introductions by introducing themselves first and saying something about why they are there and what they hope to learn or how they feel about being in the group.

It is helpful to give the women a folder in which they can hold class materials. Each woman should bring her folder to class each week.

2. BEING A HEALTHY WOMAN:

Let’s talk about what it means to be healthy women.

What does it mean to be healthy?

Example answers:

· Feeling good

· Not being sick

· Everything is working right

What can we do to stay healthy?

Example answers:

· Don’t smoke

· Don’t drink alcohol

· Eat healthy foods…So what are some healthy foods?

- Fruits, vegetables

- Eat foods that are low in sugar, fat, and salt

- Eat yogurt to help prevent yeast infections

- Drink cranberry juice to help prevent bladder infections

- Don’t eat too much fried food

· Eat three meals a day, plus snacks

· Don’t throw up food or use laxatives without cause

· Eat slowly

· Be physically active

· Wear a seatbelt in the car

· Wear a helmet when riding a bike

· Wear sun screen

· Drink a lot of water

· Brush your teeth twice a day

· Go to the doctor when you are sick and to have regular check-ups

· Take medications regularly and properly

Whose job is it to keep us healthy?

· It is mainly our job to keep ourselves healthy.

· Our staff or families can help us stay healthy.

· The doctor can help us stay healthy.

Introduce the concept that Jobs for Health are a way to practice being responsible for our own health.

3. WOMEN’S HEALTH Poster:

As a way to start thinking more about what it is to be a healthy woman and to get to know each other a little better, we are going to do a group activity. We are going to make a poster by choosing pictures from magazines that show what you think it means to be a healthy woman.

Display pictures cut from magazines of healthy activities. One facilitator should choose a picture and hold it up for the group to see. Ask the group what is shown and why it is a good symbol of a healthy activity/woman. Attach pictures onto a poster board. Go around the room and ask each group member to choose a picture and attach it to the poster board. As each picture is chosen, discuss selections and get the group to explain why they think it is a good symbol of healthy women. (Be sure to have pictures of both older and younger women to select from).

4.THINGS THAT CAN GO WRONG WITH HEALTH:

Now let’s talk about what can go wrong with our health.

What kinds of things can go wrong with our health?

Example answers:

· Colds

· Upset Stomach

· Diarrhea

· Constipation

· Flu

· Headache

· Cancer (specifically address breast and cervical)

Explain that cancer is a disease that happens when cells become abnormal and multiply. You can’t catch cancer from another person. You can’t tell by looking at someone that they have it — only a doctor can tell. Discuss that the reason for breast and pelvic examinations is to look for breast and cervical cancer and find it early so the doctor can treat it. (see Appendix H for cancer information)

5. GROUP RULES:

Discuss with the group what they think the rules should be. The following are some areas that should be included:

· Attendance:

Each session will have a lot of important information, if you miss a session you will be lost the next week. If you feel sick or know that you have to miss a session, you should call one of the facilitators. (Hand out folders.) Here is a folder with our phone number in it if you ever need to call us.

Distribute and review the schedule with dates and times with the group. Facilitators may use Appendix C from the curriculum as a guide to develop their schedule.

· Jobs for Health:

Each week there will be a little job for you to work on at home which we will talk about the next week in group. It is important for you to think about and do the jobs before you come to the group each week.

· Do not make fun of each other—support each other:

We will be discussing some things that might be embarrassing so it is important that we all support each other and not make fun of anyone. That way, we can all feel free to talk and not worry about feeling silly.

Facilitators may also stress that it is important for group members not to share information they may have about friends/roommates/family members who are also in the group.

· Take turns talking—give everyone a chance to speak

We have a limited amount of time in group and a lot of material to cover so we need to take turns talking and try to stick to the subject.

6. BREAK

The facilitator should explain that the snack each week should be healthy and discuss examples of healthy snacks. Distribute and go over the handout about healthy snacks. Use Appendix F as a reference as well as the food pyramid in Appendix E. The women generally enjoy taking turns bringing a snack each week. Solicit a volunteer to bring next week’s snack if members decide on that option. Examples of snacks are: carrot sticks, raisins, oranges, apples, 100% juice (unsweetened). The facilitator may want to make copies of Appendix F to pass out to group if the women decide to take turns bringing the snack. If at some time an unhealthy snack such as cookies or chips is brought—rather than not serving it—allow for small portions, explaining that food that is not really good for you should be eaten in moderation. Some women may still have difficulty understanding the concept of a ”healthy food” or ”eating in moderation.” The facilitator may use this time to compare healthy snacks and unhealthy snacks. For example: Is it OK to bring doughnuts as a healthy snack? Why not? What makes it an unhealthy snack? How about apples? What makes them good for us? In addition, portion control might be discussed. How many cookies can we eat if we eat them in moderation?

7. SPECIAL THINGS THAT MAKE WOMEN DIFFERENT

We are all in this group for one reason. We are all women that want to keep ourselves healthy. Let’s talk about what makes women special.

Note: Included here are common answers highlighted with a bullet mark. Facilitators should invite group members to supply answers for each of the areas covered. In most cases, the answers provided are not the only ones that could be given by members. However, the facilitators should bring up those answers that are supplied, if not spontaneously provided by group members.

What makes a woman different from a girl? (Use dolls and drawings)

· A girl becomes a woman in puberty when her body begins to change.

· A woman has a menstrual period, girls don’t

· Periods begin around age 10 or 11, sometimes later.

· A woman has pubic and underarm hair

· A woman grows breasts and needs to wear a bra.

· Women can have babies .

What makes a woman different from a man? (Use dolls and drawings)

· Men do not have a menstrual period.

· Men do not wear bras.

· Men cannot nurse babies.

· Men cannot have babies because they do not have a uterus.

· Men have a penis and women have a vagina.

· Men have hair on their chest or face.

8. RELAXATION EXERCISE

The things we talk about in this group can make us feel nervous and uncomfortable, so we are going to work on how to feel more in control and relaxed.

The Feather

C· Every person in the group will hold a feather up in front of their mouths so they can see what happens as they breathe in and out. The facilitator should take note of anyone having problems and encourage staff to help them at home.

The most important thing about relaxing is remembering to breathe. Does anyone here forget to breathe when they feel nervous? (Discuss.) How about hyperventilating? (Demonstrate.) How does that make you feel? (Discuss.) Today we are going to practice easy breathing. Take this feather and pretend it is a flower. Everybody sniff the flower, nice and smooth. That is how we breathe in easy. Now blow on the feather, nice and gentle. That is how we breathe out easy. To breathe in we smell the flower and to breathe out we blow gently on the feather. Everybody try that.

C· The facilitator should be watching to see if anyone is having trouble with the concept of breathing slowly and deeply.

C· Allow the group to practice first as a group and then go around circle and allow everyone to demonstrate individually.

Behavior Relaxation The next important thing about relaxing is helping our bodies to feel relaxed. One way to do this is to put your body in a relaxed position. Each week we will do a guided relaxation exercise to help us feel relaxed. Today we will learn 4 body positions. Next week we will learn the rest.

One facilitator leads this exercise, starting with the bottom of the body and progressing to the top. Do not rush this exercise. Make sure you maintain a slow, soothing tone of voice for relaxation exercises.

A. Body

The first relaxed posture is called “body.” Your body is relaxed when your chest and hips are straight in the chair with no movement. (Demonstrate)

Your body is unrelaxed is it is crooked in the chair, if any part of your back or hips are lifted from the chair, or if you move your body. (Demonstrate)

Please relax your body.

Feedback for each person: (Positive) Good, now take a few moments to notice the way your body feels as you relax your body. (Corrective) You seem to be a little twisted to the right/left. Or you are moving your body (Demonstrate). Good job!

Repeat the above sequence until all participants have learned the relaxed posture.

B. Head

The next relaxed posture is called “head.” Your head is relaxed when it is resting against the wall or facing straight. (Demonstrate)

Your head is unrelaxed if it is titled or turned to either side or titled up or down. (Demonstrate)

Please relax your head.

Feedback for each person: (Positive) Good, now take a few moments to notice the way your neck feels as you relax your head. (Corrective) That is close but your head is titled slightly. Can you move your head like this? (Demonstrate). Good job!

Repeat the above sequence until all participants have learned the relaxed posture.

C. Quiet

The next relaxed posture is “quiet.”

You are quiet when you are not making any noise such as talking, loud sighs, or snores (Demonstrate).

All right, please show me quiet for the next few moments.

Feedback for each person: (Positive) Good job. Notice the relaxed feelings in your throat and chest as you relax quietly. (Corrective) You need to try to be quiet while we are relaxing. (Demonstrate). Good job!

Repeat the above sequence until all participants have learned the relaxed posture.

D. Breathing

The next relaxed posture is called “breathing.”

Your breathing is relaxed when it is slow and regular (Demonstrate). It is not relaxed if it is rapid or if there are interruptions such as coughing, yawning, sneezing, sniffling, or talking.

Please show me how you can do relaxed breathing.

Feedback for each person: (Positive) Good job. Notice the relaxed feelings in your chest as you breath in a relaxed way. (Corrective) You need to breath slowly like this (Demonstrate). Please take a deep breath slowly when I say “in” and breathe out slowly when I say “out.” Good Job.

Repeat the above sequence until all participants have learned the relaxed posture. You may need to use the feathers to demonstrate slow breathing.

9. Jobs for Health

Every week we will have a job to do before the next group meeting. This assignment isn’t like school. It is to help everybody practice some of the things we learn in group.

Hand out the Jobs for Health—Week 1 (Appendix G).

Establish a snack schedule if the women chose to take turn bringing snacks.

This week, our jobs are:

A. Practice relaxing and practice breathing with the feather.

B. Look at your body in the mirror and get familiar with it. This part of the job should be done in a private place like your bedroom or bathroom. Try this with and without clothes on. We should get to know what the places that are usually covered with clothes look like.

C. Think about what makes your body feel healthy and bring in any more pictures you can find for our healthy women poster.

Close the first session by thanking everyone for attending. Ask if there are any questions. Remind everyone of the next group date and time.

WEEK 2:

THE BODY & OUTSIDE OF THE BREAST

Props needed:

· Anatomically detailed doll (female)

· Videotape (Let’s Talk About Health: What Every Woman Should Know)

· VCR and TV monitor

· Breast models with smock

· Breast poster

· Lotion

· Feathers

· Clothespins

Set up:

· Forward video to begin at the breast self-exam.

· Place breast model(s) and smock(s) on table

· Hang up breast poster

· Place other supplies (dolls, lotion, feathers, clothespins) in convenient location

1. REVIEW JOBS FOR HEALTH

This past week’s jobs for health was to practice relaxing with your feather, look at your body in the mirror, and think about what makes your body feel good.

Example of questions to initiate discussion:

· Did you look at your body? Many women will not have done this. You may choose to ask why not. Discussions about feeling uncomfortable often follow.

· What was that like?

· What can we do if we feel nervous or uncomfortable? Have someone demonstrate easy breathing from last week. It may be necessary to remind them that they can practice with the feather.

· What kinds of things make your body feel good?

2. The Outside and Inside of the Body (discussion)

This week we’re going to begin learning about the inside and outside parts of our body.

The Outside:

· What parts of your body are on the outside? (things you can see) [Look at female doll]

Skin, lips, arms, hair, legs, nails…

· What are problems that you can have on the outside of your body?

Cuts, bruises, dry skin, chapped lips, broken finger nails…

· Who takes care of the outside of your body?

You do!

The Inside:

· What parts of your body are on the inside? (where you cannot see)

- Stomach, brain, heart, bladder, bones…

· What happens if you have a problem on the inside of your body and you can’t see what is wrong?

- Go to the doctor! You will know that something is wrong because your body may hurt or not feel right. Or it might not do what it usually does. For example, you might have a stomachache, it may sting when you urinate, or you might not have a bowel movement when you usually do. You can’t see your insides to know exactly what is wrong so you need someone to help you.

· So who can take care of the inside of your body?

- The doctor… BUT it is YOUR JOB to let the doctor know when there is something wrong or if something hurts inside. You can also tell a staff person or family member to assist you with calling the doctor.

3. Learn about BREASTS

Last week, we said that one of the things that made women special is that they have breasts. So let’s talk about our breasts now. First, let’s look at a poster and see if we can name all the parts.

Picture of a breast

· The areola (pronounced ah-re’o-lah) is the big round circle in the center of the breast. It might be pink or brown.

· The nipple is the raised part in the center of the areola.

What are breasts for?

Example answers:

· Mammary glands in the breasts produce milk for mothers to feed their babies.

· Breasts are full of sensitive nerves that may feel good when touched.

How do you take care of breasts?

Example answers:

· Wash underneath them and dry carefully and thoroughly.

· Wear the right size bra.

· Do self breast examinations.

Why do we wear bras?

Example answers:

· A comfortable bra feels good.

· Our clothing looks better with a bra on.

· A bra can stop our clothes from being see-through.

· When our breasts are large or heavy it feels better to have support.

· Wearing a bra and supporting our breasts can be good for our backs, especially if we have large breasts.

These are suggestions for why we might wear bras. There is no law saying a woman must wear a bra at all times.

When do we not wear bras?

Example answers:

· When we go swimming

· When we take a shower

· When we sleep

What problems can you have with your breasts on the outside?

Example answers:

· Your bra may not fit right.

· You might have problems using the fasteners on your bra and closing it properly.

· Soreness in your breasts during your period.

· A rash underneath your breasts.

What can you do if you have a problem?

Example answers:

· Ask your staff or parent to take you to buy a new bra.

· Take a bus, taxi, or walk to the store to buy a new bra.

· Sales people can help you to find bras that are easy to fasten and fit right.

· You can buy a sports bra with no fasteners.

· See the doctor for a rash or other problem that you don’t know how to handle.

4. ROLE-PLAY ACTIVITY

Each week, we will pretend to have problems that we need help with. It’s OK if you don’t know how to do this or feel shy because we will help you along the way. So let’s try some. ______ (one facilitator) is going to pretend she wants to buy a new bra. She’s going to ask ________ (another facilitator),who is pretending to be a staff or a family member, for some help.

A. Modeling the wrong way to solve a problem

One facilitator asks the other facilitator for some help purchasing a bra. The first time, the question is asked quietly with no eye contact, with the staff acting as if she doesn’t understand.

B. Have members point out what the facilitator did wrong in

asking for help

Possible problems include: no eye contact, mumbling, covering her mouth with her hand, hiding her face, not stating exactly what she wanted (i.e., not being able to say bra), becoming frustrated with the staff facilitator, not knowing if the staff facilitator is listening.

C. Model the correct way to solve a problem

The facilitators will again act out the scenario, but will use the correct suggestions provided by the group members. It may be helpful to then have the women discuss what the facilitator did correctly.

D. Role Play

The group members will each do a role-play and the group and facilitator will point out things done correctly. Offer any advice for improvement. During this first role-play experience, it may be helpful to have a facilitator act as staff for each of the women. After all of the women in the group become more comfortable with role-plays, the group members may choose to act out the scenarios with their actual support staff or other group members. The facilitator, however, should help to guide the role-play correctly. Remember to interrupt and provide corrective feedback if participants make mistakes. It is very important for them to practice the correct way to solve a problem.

Think about what you could do if you had one of these problems and then practice asking for help.

Possible role-plays for this week are:

1. Your bra is leaving marks on your skin where the straps are.

2. Your bra has holes in it.

3. Your bra is all stretched out and sagging.

4. Your breasts are sore. (You want to see a doctor.)

5. There is a painful spot on your breast. (You want to see a doctor.)

Summary

If we have a problem, like a bra that does not fit, we can take care of it ourselves. If there is something wrong that we can’t see (remember, when our insides hurt or don’t feel like they normally do), we need to go see the doctor.

4. BREAK

A group member who volunteered the week prior supplies snack. Note healthy choices and invite the group member to explain why she selected those healthy choices. Decide who will bring snack for the next group.

5. BREAST SELF-EXAMS

Has any one ever had a doctor check their breasts? What does the doctor do?

Example answers:

· Touch

· Push

· Squeeze

We can do the same thing ourselves to make sure our breasts are OK before we see the doctor; we call this a breast self-exam. We check our breasts to feel for lumps inside that could be cancer.

Breast Self-Exam (BSE) Video Clip

Play the video of a woman in her bedroom doing a breast self-exam Let’s Talk About Health: What Every Woman Should Know. Our bodies are our responsibility so we need to be comfortable checking our own breasts. We do this so that we can help the doctor find problems or lumps, and so that when doctors examine our breasts, we are prepared and comfortable.

Discussion of Video

What was she doing?

· She was checking her breasts in her bedroom.

· She used small circles to feel inside the entire area of both breasts for lumps.

· She squeezed her nipple at the end to look for fluid.

Where would be a good place to do your breast self-exam?

· A private place like the bathroom or your bedroom.

Who should do your breast self-exam?

· Only you, your doctor, or your nurse should be checking your breasts.

(Not friends or staff)

6. PRACTICING THE BREAST SELF-EXAM AND RELAXATION

If there are more than 4 women in the group, the women should split into two smaller groups. One group will work with the breast models with the smock and learn to do a breast self-exam with one of the facilitators. The other group will work on relaxation exercises with the second facilitator.

· After a set amount of time (usually 15-20 minutes), the groups should switch.

· The facilitator should review the instructions in “Breast Health Access for Women with Disabilities: BSE Instruction Protocol” (in Appendix K) , in case some women have trouble with the traditional suggested BSE technique.

The Breast Self-Exam (BSE)—Group One

It is imperative that the facilitator uses the breast models (sizes A, B & C) and the smock as aids for the following instructional. Place the breast models and smock on a table, taking care that no one’s view is obstructed.

Note: We have not provided a script for this section, although the facilitator should communicate the “points to remember” and “BSE instructions” listed below to group members. For instruction to flow as naturally and as clearly as possible, we suggest that the facilitator review and practice this section repeatedly before actually teaching it to the group.

Points to remember

· The BSE should be done in a private place.

· The BSE should be done at least one time a month.

· Pick a date or a certain number of days after your period to help you remember to do it. We suggest 3 days to a week following the end of your period. If you do not get your period or if that is too hard to remember, do your BSE every month on your birth date.

· Examine the entire breast including breast tissues under the arm and between the breasts.

BSE Instruction

1. The first circle is made with a soft touch, the second using a medium pressure, the third a very firm pressure. Take care to differentiate between a rub and a poke. Women will often poke instead of using a careful touch (like putting on lotion).

· Demonstrate using a circular motion and appropriate pressure by rubbing hand lotion on each woman’s forearm. The woman should then demonstrate on the facilitator’s forearm.

2. Demonstrate the BSE technique on the breast model placed on the table.

3. Then, to simulate doing an actual breast self-exam, put on the smock and demonstrate how to examine the breast model in the smock’s pocket. It is preferable to have the women lie down to practice BSE since they would probably lie down at home.

· Remember to raise your arm over your head. This should be the arm on the same side of the body as the breast you are checking.

· Using the soft part of the three middle fingers, make three circles pressing flat in each spot that is examined on the breast.

Potential problems:

1. Women often cannot physically move and keep their pinky down without help. It may be necessary to put their hands in the correct position if you find they have problems. If they still cannot do this, instruct them to at least not use their thumbs when checking their breasts.

2. Women who have physical limitations may prefer to practice the circular motion in private. Please refer to instructions “Breast Health Access for Women with Disabilities: BSE Instruction Protocol” ( in Appendix K)

3. Women also have difficulty understanding how to use the pads of their fingers instead of the tips. You may need to point out the difference.

· Move to a new spot after each set of circles, making sure to cover the entire breast. Hand-over-hand instruction is necessary for many of the women. Be sure to ask each woman who might need hand-over-hand if it is okay for you to guide her hand over the breast model while it is still on the table.

· Don’t forget to squeeze the nipple. Use two fingers in a scissors-like motion or two hands as seen on the video.

· Remember to check both breasts!

After demonstrating BSE, give each participant a chance to try out the technique

· First, on a breast model placed on the table.

· Then again, wearing the smock with the breast model in the front pocket.

Behavior Relaxation—Group Two

First we will review the first four relaxed body positions. Ask participants to recall the positions learned last week. Praise accurate descriptions or demonstrations.

A. Body

The first relaxed posture is called “body.” Your body is relaxed when your chest and hips are straight in the chair with no movement. (Demonstrate)

Your body is unrelaxed is it is crooked in the chair, if any part of your back or hips are lifted from the chair, or if you move your body. (Demonstrate)

Please relax your body.

Feedback for each person: (Positive) Good, now take a few moments to notice the way your body feels as you relax your body. (Corrective) You seem to be a little twisted to the right/left. Or you are moving your body (Demonstrate). Good job!

Repeat the above sequence until all participants have learned the relaxed posture.

B. Head

The next relaxed posture is called “head.” Your head is relaxed when it is resting on the wall or facing straight. (Demonstrate)

Your head is unrelaxed if it is titled or turned to either side or titled up or down. (Demonstrate)

Please relax your head.

Feedback for each person: (Positive) Good, now take a few moments to notice the way your neck feels as you relax your head. (Corrective) That is close but your head is titled slightly. Can you move your head like this? (Demonstrate). Good job!

Repeat the above sequence until all participants have learned the relaxed posture.

C. Quiet

The next relaxed posture is “quiet.”

You are quiet when you are not making any noise such as talking, loud sighs, or snores (Demonstrate).

All right, please show me quiet for the next few moments.

Feedback for each person: (Positive) Good job. Notice the relaxed feelings in your throat and chest as you relax quietly. (Corrective) You need to try to be quiet while we are relaxing. (Demonstrate). Good job!

Repeat the above sequence until all participants have learned the relaxed posture.

D. Breathing

The next relaxed posture is called “breathing.”

Your breathing is relaxed when it is slow and regular (Demonstrate). It is not relaxed if it is rapid or if there are interruptions such as coughing, yawning, sneezing, sniffling, or talking.

Please show me how you can do relaxed breathing.

Repeat the above sequence until all participants have learned the relaxed posture.

Now we will learn some new positions so we can do them all together.

E. Feet

The next relaxed posture is “feet.”

Your feet are relaxed when both heels are resting on the floor with the toes pointed away from each other like this (Demonstrate). They should make a “V”.

Your feet are not relaxed if your toes are pointing straight up or turned outward too much or if your ankles are crossed (Demonstrate).

Please show me relaxed feet.

Feedback for each person: (Positive) Great. Now just relax and take a few moments to notice the way your feet and legs feel when you relax your feet. (Corrective) Your toes are pointing up too much. Just let your legs and feet flop (Demonstrate). Good job!

Repeat the above sequence until all participants have learned the relaxed posture.

F. Hands

The next relaxed posture we are going to learn is “hands.”

Your hands are relaxed when you rest them on the arms of the chair, or in your lap, with your fingers slightly curled in a claw like position (Demonstrate). Your hands are not relaxed when if the fingers are flat or curled into a ball. (Demonstrate).

Please show me relaxed hands.

Feedback for each person: (Positive) Good. Now just relax and take a few moments to notice the way your hands and arms feel when you relax your hands. (Corrective) Not quite, curl your fingers a little more so that it looks like this (Demonstrate). Good job!

Repeat the above sequence until all participants have learned the relaxed posture.

G. Shoulders

The next posture is called “shoulders.”

Your shoulders are relaxed when they are resting against the chair and are rounded with the tops in a straight line. First, lift your shoulders up as high as you can and then let them drop (Demonstrate). Your shoulders are unrelaxed if they are raised or twisted if is one shoulder is higher than the other (Demonstrate).

Alright, can you show me relaxed shoulders?

Feedback for each person: (Positive) Good. Now just relax and take a few moments to notice the way your shoulders feel. (Corrective) Your left shoulder appears to be higher than your right one. Your shoulders look a little crooked (Demonstrate). Good job!

Repeat the above sequence until all participants have learned the relaxed posture.

H. Eyes

The last relaxed posture is called “eyes.”

Your eyes are relaxed when the eyelids are closed and smooth. (Demonstrate).

Your eyes are not relaxed when they are tightly shut or if there is eye movement beneath the eyelids.

Please relax your eyes.

Feedback for each person: (Positive) Good job. Notice the relaxed feelings in your eyes and forehead as you relax for a few moments. (Corrective) Your eyelids are closed a little too tightly. Make them smooth, like this (Demonstrate). Good Job.

Repeat the above sequence until all participants have learned the relaxed posture.

Note: Behavior Relaxation is one type of relaxation exercise. If women in your group have trouble with the specific postures or are especially anxious about doctors or exams, they might benefit from additional relaxation exercises such as Progressive Muscle Relaxation. Please see instructions in Appendix L.

7. SWITCH GROUPS

Those women who learned BSE should now learn relaxation techniques, and vice versa.

8. This week’s Jobs for Health

Hand out the Jobs for Health—Week 2 (Appendix G). This week’s jobs are:

A. Take a good look at your breasts in the mirror.

B. Check your breasts when you are in the shower/ bath or in bed.

Explain to the women that even though they will be checking their breasts monthly in the future, they should practice every day this week.

Note: A shower breast self-exam card is usually available from your local chapter of the American Cancer Society and is great for the women to take home with them on this visit.

C. Practice relaxation exercises.

WEEK 3:

THE INSIDE OF THE BREAST

Props needed:

· Videotape (Let’s Talk About Health: What Every Woman Should Know)

· TV and VCR

· Breast models

· Feathers

· Clothespins

· Hand lotion

Set Up:

· Forward video to clinical breast exam

· Place breast models, smocks, & lotion on table

· Organize feathers, clothespins for relaxation exercise

Today we will learn more about how we take care of our breasts and also how doctors take care of them.

1. REVIEW JOBS FOR THE WEEK

The jobs for this week were to practice relaxing, take a good look at your breasts in the mirror, and do breast self-exams in the bath, shower, or your bedroom everyday.

Example of questions:

· What was it like?

· Did you notice anything you had not noticed before?

2. REVIEW OF BSE

The facilitator should have the women in the group generate as many of the answers as possible.

What are some things we need to remember when we do a breast self-exam (BSE)?

· Do it in a private place.

· Do it one time a month.

· Use the soft pads of the middle three fingers to press flat.

· Do three circles (soft, medium, hard) in each place touched.

· Cover the entire area of the breast including the nipple and under the arms.

What are we looking for when we do BSE?

· Anything different.

· A new lump that was not felt last time.

· Liquid coming out of the nipple.

· Funny color, puckering, or dimples on the outside of the breast.

What should you do if we find something different while doing a BSE?

· Call doctor so she can check the breast or tell a staff or family member to help you call the doctor.

3. BREAST EXAM BY THE DOCTOR

We can fix little problems on the outside of our breasts like rashes and bras not fitting right, but we cannot see the insides of our breasts to see what is wrong. To fix a problem on the inside we need to go to our doctor. The doctor can check the inside better than we can at home.

Clinical Breast Exam (CBE) Video Clip

Play the video Let’s Talk About Health: What Every Woman Should Know. View the clinical breast exam as shown in the Doctor’s office. In the video, the doctor explains to the woman how she will conduct a clinical breast exam.

We will be watching a short video of a woman at her doctor’s office having a breast exam.

Discussion

Example questions for discussion:

· What did the doctor do?

· Did the woman look nervous?

· If she was nervous, what could she do to relax? (Deep breathing, count, tell herself everything will be ok, try to rest her body.)

4. ROLEPLAY

Each week, we will pretend to have problems that we need help with. It’s OK if you don’t know how to do this or feel shy because we will help you along the way. So let’s try some. ______ (one facilitator) is going to pretend she has a rash under her breasts. She’s going to ask ________ (another facilitator) who is pretending to be a staff or a family member, for some help.

A. Modeling the wrong way to solve a problem

One facilitator asks the other facilitator for some help with a rash. The first time, the question is asked with her face covered and the staff acting as if she doesn’t understand.

B. Have members point out what the facilitator did wrong in
asking for help

Possible problems include: no eye contact, mumbling, covering her mouth with her hand, hiding her face, not stating exactly what she wanted (i.e., not being able to say breast), becoming frustrated with the other facilitator, not knowing if the staff facilitator is listening.

C. Model the correct way to solve a problem

D. Role-play

The group members will each do a role-play and the group and facilitator will point out things done correctly. Offer any advice for improvement. It may be helpful to have a facilitator act as staff for each of the women. After all of the women in the group become more comfortable with role-plays, the group members may choose to act out the scenarios with their actual support staff or other group members. The facilitator, however, should help to guide the role-play correctly. Remember, it is important for the women to practice using good skills in the role-play so interrupt if mistakes are being made.

In this role-play we are going to practice talking about problems and asking the doctor questions.

Possible role-plays:

1. Your breasts were really sore last month.

2. The doctor said she/he is giving you a new medicine and you are not sure what it is for.

3. You find a rash under your right breast.

4. You find a lump while doing a breast self-exam.

Remember that good role-plays consist of describing what is wrong and where (i.e., actually saying breast), making eye contact, articulating clearly, and being considerate of the listener (i.e., not getting angry at them if they don’t understand what you mean). Give each group member a chance to participate in a role-play. Give positive feedback on what she does right.

5. BREAK

Remember to discuss healthy food choices for snack and have someone else volunteer to bring next week’s snack.

6. THE MAMMOGRAM

If the doctor finds something she is concerned about, like a lump, he/she can check it with a special machine that can take a picture (or an X-ray) of the inside of a woman’s breast. It may be helpful to show what the picture taken by a mammography machine looks like. You might choose to copy a picture from a medical book.

Points to emphasize about mammography:

· Ask your doctor how frequently you should have a mammogram. After the age of forty, women generally have a mammogram every one to two years.

· A mammogram is especially important if there is a history of breast cancer in a family. This means that it’s very important for you to get mammograms if your mother, sister, aunts, or grandmother has had breast cancer. In fact, you should start getting mammograms at age 35 if anyone in your family has had breast cancer.

Mammogram Video

Let’s Talk About Health: What Every Woman Should Know has an example of a mammogram which you should show at this point in the curriculum (you will need to fast forward the tape from the breast exam with the doctor). Information on how to obtain these videos can be found in the Appendix B.

In this video we will see a woman getting a mammogram.

Discussion

Example of questions for discussion:

· What did we see in this video?

· Has anyone here had a mammogram before?

· If so, what does a mammogram feel like? (Pinch or pressure.)

· Why is a mammogram important? (Because it is the only way to see what is happening inside.)

· How long did her mammogram last? (Point out that it was less than 1 minute and she made it through; review video again and this time count seconds with the group to help them understand how long it takes.)

· If she felt nervous during the mammogram, what could she have done?

7. PRACTICING BREAST SELF-EXAMS AND PAIN COPING TECHNIQUES

As with last week’s instruction, the group will split into two smaller groups. One group will practice how to do a breast self-exam and the other group will work on relaxation and pain coping techniques. The groups will switch after approximately 15-20 minutes.

The Breast Self-Exam—Group One

The facilitator should use the breast models and smocks as aids for the following instructional. Remind the women that we are pretending that we are alone and that we don’t have a shirt on.

Use probing questions to get the women to remember the following points:

· The BSE should be done in a private place.

· The BSE should be done at least one time a month.

· Picking a date or a certain number of days after your period will help you remember to do it. We suggest 3 days to a week after your period ends. If you do not get your period do your BSE every month on your birth date.

· You should exam the entire breast including breast tissues under the arm and between the breasts.

Have the women walk the facilitator through the steps of the BSE.

· One effective way to do this is by making mistakes and asking the women if it is being done correctly. For example, the facilitator may forget to raise her arm above her head or use her whole hand to complete the exam.

· Make sure the group members point out mistakes, tell the facilitator how to do it correctly, and watch as the facilitator completes that step. (Women will often try to show the facilitator how to do the exam correctly by touching the breast model. We discourage them from doing so at this point because the model is physically on someone else’s body. We use this opportunity as a teaching point by stating that no one else should do your breast self-exam, so no one else should touch the facilitator’s breast right now, even though this situation is pretend.)

After the facilitator has completed her exam, have each of the women attempt the BSE using the breast model and the smock. There is usually time for each woman to complete one breast. For each woman who still needs hand-over-hand instruction, form her hand into the position used for the exam, demonstrate the touches on her arm, and guide her through the exam by her elbow (instead of placing your hand on hers).

Susan M. Havercamp, Ph.D.

NC Office on Disability and Health

Preface v

Curriculum

PREFACE

INTRODUCTION AND HOW-TO

A. Body

B. Head

C. Quiet

D. Breathing

THE BODY & OUTSIDE OF THE BREAST

A. Modeling the wrong way to solve a problem

Points to remember

A. Body

B. Head

C. Quiet

D. Breathing

E. Feet

G. Shoulders

H. Eyes

A. Modeling the wrong way to solve a problem