PHA Support Group Leadership Manual 2013 - PART 2

1 | P a g e

acadiana * alberta * amarillo * arizona pulmonary associates phoenix * asheville * athens * baltimore - university of maryl * baltimore - hopkins * bend * beth israel nyc * birmingham - al * boston * boston pediatric * boston - ma * brevard county * brooklyn * buffalo - niagara falls * caparra wellness center - puerto rico * capital region of albany * central ca - san jose * central florida * central jersey morristown * central penn * central texas * central utah * charleston - sc * charleston - wv * charlotte * chicago * chicago - il * columbia presbyterian nyc * columbus - oh * connecticut * craven county carteret * dallas * dallas - en espanol group * dartmouth * dayton - oh * daytona beach * dc capital breathers * delaware valley * denver * denver - under 35 * des moines - seattle * detroit - michigan * east central florida * el paso - tx * eugene - or * everett - wa * fayetteville * flagstaff * flint-saginaw michigan * fort wayne * fox river valley * fresno * ft. myers - naples * ft. worth * gr isl (ne) * gr rapids (mi) * greater atlanta georgia * greater lehigh valley poconos * green bay - wi * greensboro * greenville - nc * gulf coast mississippi * hampton roads * harbor-ucla * harrisburg hershey * hawaii * hopkins * houston * huron * indianapolis * inl northwest idaho * inner-city clevel * iowa * iowa * jackson - ms * jacksonville area * jefferson city - mo * kansas * kansas city * la pediatric * lancaster - pa * las vegas * latino support of south fl * lexington - south carolina * lima - oh * long island support * los angeles - usc univ. hosp. * louisville * louisville sail * lubbock * madison - wi * magic valley - id * manitoba * marion - oh * mercer - clevel - pittsburgh * michigan * mid-hudson valley ny * midl - odessa area * midls south carolina * milwaukee * minneapolis metro area * mobile - al * modesto * montana * nashville * nebraska * new castle - de * new hampshire * new hyde park * new orleans support * newport beach * nj-newark beth israel * north central florida * north jersey * north texas * north west arizona - las vegas - clark county * northeast mississippi * northern virginia * northwest georgia tennessee * northwest indiana * northwest peninsula * novato * nyc - uptown * nyc columbia * nyc columbia university medical * oklahoma city - southwest ok * orlo area * pals * pee dee - south carolina * pennsylvania del val * pensacola * philadelphia * phoenix * piedmont * piedmont are nc * pittsburgh * port charlotte * portl - or * puerto rico * puyallup * raleigh - durham - chapel hill * rapid city * reno * rhode isl * richmond * rio gre valley - mcallen * rochester - minnesota * rochester - ny * sacramento * san antonio * san bernardino * san diego * santa barbara * santa fe - albuquerqu new mexico * silver spring * south carolina - north * south dakota * south florida * southern colorado * southern illinois - carbondale * southern maine - northern maine - central maine - southern maine * southern new jersey * southside virginia * southwest florida * southwest georgia * southwest virginia * springfield * st. louis area * stamford * staten isl * tennessee * the inl northwest * toledo * treasure valley * tri-state cincinnati * tucson * ucsf * utah-pals * vermont * victoria * west los angeles * west michigan * west virginia * wojo of south orange county * wyoming * york * dc capital breathers * hampton roads * harbor-ucla * harrisburg hershey * hawaii * hopkins * hawaii * hopkins *

Support Group Leader Manual

Setting Up Your First Meeting

- 2 - | P a g e

After my diagnosis, as I came to realize

how much I had benefitted from the work

of so many people — fellow patients,

caregivers, medical professionals, PHA —

I felt a desire to give something back for all

I have received and still receive.

–Perry Mamigonian,

Support Group Leader,

Fresno, Calif.

- 3 - | P a g e

Table of Contents

Setting up the Meeting ................................................... 5

Identify a Good Meeting Location ............................................... 6

Determine Appropriate Meeting Dates, Times ............................ 8

Select Meeting Frequency ............................................................ 9

Consider Providing Refreshments ............................................. 10

Tips for Managing Food at Meetings .......................................... 11

First Meeting: Speaker or No Speaker? ..................................... 12

First Meeting Topic: Leaders Weigh In ..................................... 13

Find Patients............................................................................... 14

How Many to Expect? ................................................................ 15

Hosting the first Meeting ............................................. 17

Set Up the Room ......................................................................... 18

Create a Meeting Agenda ........................................................... 19

Start the Meeting ........................................................................20

Use a Sign-in Sheet ..................................................................... 21

Facilitate the Meet and Greet ..................................................... 22

Read the Support Group Member Agreement

and Confidentiality Statement ................................................... 23

Thank you for taking on the rewarding role of PHA support group leader. Every group is different. Every region of the country and city or town will have its special way to run a group. You don’t need to do everything included in this section — they’re just ideas to get your started. Whatever you do to bring patients, families and caregivers together is valuable to those who attend.

- 4 - | P a g e

There is so much support at our

meetings that all my members and I

consider each other as a second family.

We encourage, help each other, and

learn from each of our unique

experiences as patients. Just knowing

and meeting another individual who is

experiencing the same illness and can

relate helps so much.

–Joy Morgan,

Support Group Leader,

Lakeland, Fla.

- 5 - | P a g e

Location! Location! Location! It’s not just a funny expression. Location is important in

planning your first meeting. The food, timing, day of the week and other logistics will

also contribute to how successful you are. Take a look at the following pages to see some of

the ideas we’ve learned from successful leaders.

If you haven’t already been in touch with PHA about your meeting, this is a good time to do

it! Contact PHA to have your group officially listed online and for tips on what to do

next: 301-565-3004 x755 or [email protected].

● ● ●

Setting Up the First Meeting ● ● ●

- 6 - | P a g e

Identify a Good Meeting Location

Where you meet will set the tone for your group. The options suggested below provide comfortable and accessible rooms at no cost.

Things to Consider Based on the Location You Choose

Your local schools, community centers, churches or libraries. Use of a room at these locations is usually free and just has to be reserved in advance. Check to make sure you can bring in outside food and that parking is accessible. Your local PH center or hospital. The perks of having your meetings at the center is that the rooms are usually free, patients know where it is, and your doctors are more likely to come and speak since they’re already there. You can ask the nurse coordinator if she or he can find an available room. The drawbacks are that the room may feel somewhat clinical, and patients may also feel inhibited talking in front of their medical professionals.

A restaurant or coffee shop. Pick an inexpensive restaurant or coffee shop; make sure you can get enough chairs or round tables. The downside is that if you schedule at a busy time, then it might be too noisy for conversation.

In a large-scale comprehensive census of PHA support group leaders conducted in the fall of 2012, leaders told us a lot about their meetings and similarities and differences in their organizing efforts, including where they meet:

While the majority tends to meet at hospitals, many of our groups also meet at restaurants, libraries, churches and other communal spaces.

Where do current support groups meet?

- 7 - | P a g e

Things to consider

Is the location easy to find?

Can you bring in outside food?

Can you control the temperature?

Is it too loud for conversation?

Is parking free and close by?

Are there bathrooms nearby?

Can wheelchair and oxygen users get around the room easily?

“office space provided by our hospital”

“social club”

“the education center of a long-term health care facility”

Leaders weigh in on meeting location:

- 8 - | P a g e

Determine Appropriate Meeting Dates & Time

The day of the week you choose to host your meetings may affect the number of patients who are able to attend as well as affect the involvement of medical professionals as speakers. For example, a meeting on a Saturday may be most convenient for patients, but it may be challenging for medical professionals who could be unavailable on a day off to attend as a speaker. Every region is different. Some medical professionals may even prefer a Saturday meeting. We asked leaders to weigh in on this subject and here’s what we learned: If you choose to meet during the week consider…

…meeting on a weeknight. This way, medical professionals and patients who work can attend. In addition, some patients may need to be driven by a caregiver or family member who works during the day. Just be sure to consider traffic when planning evening meetings. …some groups meet mid-week, Tuesday or Wednesday after working hours. Patients may be tired at the end of the week and after a weekend. Some may forget about a meeting scheduled on Monday. …those who work do not have to sacrifice valuable time from their weekend.

If you choose to meet during the weekend consider…

…meeting on Saturday afternoon. Some patients spend Sundays at church or with family. Some patients need more than one hour to drive to the meeting, so an afternoon time would give them enough time to wake up at a reasonable hour and return home driving back in daylight. Of the 160 leaders who completed PHA’s 2012 Census of Support Group Leaders, the vast majority choose to meet on Saturday. …those who work during the week have to sacrifice valuable time from their weekend. …some patients may need to be driven by a caregiver or family member who works during the week.

Special Exception for Hospital-based Meetings Consider meeting during PH “clinic hours.” For example, John Hopkins’ support group meets in the middle of the day during their Tuesday clinic hours because patients traveling for their doctor’s appointments can also stay and wait for the support group meeting.

- 9 - | P a g e

Select Meeting Frequency

“I originally had my support group meet every other month, but then one lady said

that every other month was too long of a wait and wanted the group to meet more

often. I didn’t feel as though I could put together a meeting every month, however,

because I would need to do a lot more than time allows figuring out speakers and

logistics. So I decided that on even-numbered months, on the second Saturday, we

get together to discuss a formal topic, most often with a speaker, and on odd-

numbered months, we just get together for a lunch (usually a “dutch lunch” where

everyone pays for or brings their own meal) and talk. I think that just getting

together and talking is something not to be overlooked. As for the lady who brought

up that she wanted to meet more often, I let her pick where we go to eat.”

– Doug Taylor, Support Group Leader,

Lexington, South Carolina

Every group is different, but we have seen a new trend emerge over the last decade: our groups are starting to meet more frequently. According to our census, nearly 40% of our groups meet monthly and 30% meet every other month. During the first meeting, we suggest that you consider asking your participants how often they would like to meet. If many patients are traveling a great distance, they may only be able to meet quarterly or six times a year at best. If you do not have time to run monthly meetings, consider including some less formal meetings that require less planning or meeting six times a year until you find a co-leader who can help you. Talk to PHA if you need more feedback on how often your group should meet.

“Monthly”

“Every other month”

“Two months on, one month off”

“Every 3 months”

“Quarterly”

“4-5 times a year”

“We skip Jan, Feb & July, Aug due to weather”

Leaders weigh in on how often they meet:

- 10 - | P a g e

Consider Providing Refreshments

Why? Food is not necessary to bring people to a meeting, but it sure does help keep them there and focused. It also provides a familial, comforting experience to those dealing with the psychological and emotional shock of being diagnosed with PH. How? Whatever you do, try to avoid paying out of your own pocket for any expenses, including food. If you start paying for meetings yourself, you may find you want to meet less frequently or cancel meetings if you can’t afford the costs. Get accustomed to finding sponsors or finding a way to pay little or nothing for meetings. This will lift monetary burdens and encourage patients to come.

Supports groups have met at grocery stores, including Whole Foods. They receive cooking tutorials, shopping tips and tours of the stores produce and heart healthy foods.

Support group leaders occasionally host annual events at hotels. They work with health care professionals and the venue to ensure foods appropriate for PH patients.

Northern Virginia group leaders occasionally bring vegetable trays, fruit, and low-salt snack trays for light refreshments.

- 11 - | P a g e

Tips for Managing Food at Meetings

Get sponsorships: PHA has a list of pharmaceutical companies who can help sponsor your meeting. They may offer to provide a speaker, in addition to lunch or light refreshments to your meeting. You’ll need to collect RSVPs to give them a head count for the meeting.

Use PHA: Through PHA’s Support Group Central Fund, you can apply for meal sponsorships at a general rate of $15/person, or more for special meetings. Contact [email protected] or 301-565-3004 x758 for details.

Think Healthy: However you arrange for food, be sure that the food is healthy — low fat, low salt. There are other dietary considerations for patients; talk to your group for suggestions on future meals or refreshments.

Go Cheap: If you can’t get sponsorship for food and haven’t decided your meeting location, consider having it at a coffee shop. Make sure there’s space and it is not too loud for conversation. See if you can reserve tables in advance.

Brownbag: Don’t cancel your meeting because you can’t afford to provide refreshments or you can’t get sponsorship in time. Be explicit on your flyer by letting people know that they can bring their own food. Make sure your meeting location allows outside food.

Potluck: You can organize a potluck meeting and have members bring in store-bought items. Coordinate at an earlier meeting or online so that you don’t have five desserts and no main dish, etc.

“We always have fresh fruit and vegetables accompany our entrée.”

- 12 - | P a g e

First Meeting: Speaker or No Speaker?

PHA informally polled PH support group leaders on our special Facebook group and asked them whether they thought a “meet and greet” or a speaker presentation would be better for a first meeting. As you can see from the poll results below, leaders consider “meet and greet” the preferred topic for a first meeting 10 to 1.

Plan for Fun with Our Guide! How do you run a meeting without a speaker?

How can you make a meeting more fun and uplifting?

How can you get people to share in positive and life-affirming ways?

PHA created a meeting topic kit to help you plan a meeting without a speaker and have fun in the process! It offers fun ice breakers, games and tips on giving attention to the social aspects of a PH support group. If you don’t already have this kit, contact PHA to request one: [email protected] or 301-565-3004 x755.

- 13 - | P a g e

First Meeting Topic: Leaders Weigh In

From our Leader Facebook Group:

- 14 - | P a g e

Find Patients

Make a Business Card Your first step is to put your information on paper—either a generic flyer about your group or your own support group leader business card for distribution. You can print free business cards at www.VistaPrint.com. Once you have something to distribute, you should start talking up the group around town with doctors, nurses, patients and supporters.

“I have a business card that has the name of the support group on it, my name, email, phone number and I staple it to the letter my local PH doctor’s office gives out to all of the new PH patients. Local docs even ask PH patients if they are aware that there is a support group available to them; we added 20 new patients by doing this.”

Talk to Docs

Introduce yourself in person or over the phone to medical professionals who treat PH patients. A list of PH-treating doctors is online at www.PHAssociation.org/FindADoctor.

Because of HIPAA (privacy laws), these medical offices cannot share the names of their patients with you, but they can pass your information to their patients. Ask if they can mail your flyers to their patients.

Use PHA’s Membership PHA will assist you with sending out meeting notices to our patients, caregivers and general members at no charge to you. Submit your meeting details with at least 2-3 weeks advance notice using our online form: www.PHAssociation.org/CalendarForm. We can mail out special “Save the Date” postcards to our members in your community. Leaders have told us that this helps double their numbers in attendance. We will also list your meeting in our online calendar.

Get in Your Newspaper Use free media! Local newspapers offer free publicity on their community or health calendars. Contact them for details. Local access TV and cable networks may post your group information for free as well. PHA can help. Contact [email protected] or visit our website for more tips www.PHAssociation.org/PHAware.

- 15 - | P a g e

How Many To Expect?

Leaders often ask us, “how many should I expect to show up?” This is a very difficult question and depends upon numerous factors, including:

1) How much promotion you have been able to conduct 2) Whether you are in a highly populous area or an area near a clinic that serves

many pulmonary hypertension patients 3) Whether the speaker, topic or title of your support group meeting may draw

people to your meeting We have observed that a typical first meeting with a “meet and greet” theme (no speaker) tends to have modest turnout of anywhere from 5 – 15 patients. When you have PHA mail out postcards to our patients on your behalf, and in all of your publicity, it is important to ask your participants to RSVP in advance. Collecting RSVPs in advance gives you a better sense of how many you might expect. Some people RSVP but are unable to attend, others show up without letting you know. However, collecting RSVPs will help encourage those interested to take the first step and reach out to you for conversation and information about the group. Do not worry if your meetings are small – it only takes two people to have a support group. You can always build on your outreach efforts. Leaders have said that patients sometimes cannot come for a variety of reasons including: not having a ride, working during meeting times, living too far away, weather conditions, traffic conditions, conflicting plans with friends or family, and other individual conflicts. Don’t be dismayed if you expected a larger number and fewer show up. Keep trying and keep hosting meetings — your membership will grow over time.

“I had my first meeting recently. We only had 3 patients aside from me… but they were so happy to meet one another and know they were not alone. It was just a “meet and greet” but considering they never had a meeting in that area they were all super excited! I told them not to give up because I won’t, and we will have speakers and get more members! I left with the biggest smile on my face knowing that I helped three people just connect and find comfort in the fact that they are not alone!”

- 16 - | P a g e

“The first Somerset, New Jersey PH

Support Group exceeded my expectations.

One woman was thankful that finally she

can attend a group closet to home. The

others were happy to be able to share with

people who can relate to them.”

–Venita Welcome,

Support Group Leader,

Somerset, New Jersey

- 17 - | P a g e

Congratulations! You’ve found a place to meet and you have your first meeting set up.

You’ll want to prepare for your role as the meeting host, facilitator and leader. The

following pages will take you step-by-step in the process of preparing for the first

meeting.

If you haven’t been in touch with PHA’s staff, this is the time to do it. It’s not too late

to request materials, information and support from our office. Contact us at

301-565-3004 x755 or [email protected].

● ● ●

Hosting Your First Group Meeting

● ● ●

- 18 - | P a g e

Set Up the Room

You can run a meeting without having set up the room, but arriving a half hour early and preparing for the meeting can help you maintain organization and structure. Directions and Signage Whenever appropriate, be sure to put signs outside on doors to provide direction to your meeting room. Room Set Up: Tables and Chairs Make sure your room is set up to your liking. Some groups meet in a circle. Others have their rooms with fixed seating and are unable to move chairs. Do what you need to in order to provide the right set-up for your meeting. Bring a caregiver or friend to help you with the “heavy lifting” if you are unable to move chairs. Information Table If you requested PHA materials in advance, put them out on a table. New leaders receive a “Support Group Leader Box” with materials and a free table copy of a recent edition of the Pulmonary Hypertension: A Patient’s Survival Guide. Contact PHA if you did not receive a box. Meeting Checklist Make sure you have a designated place for everything you need to have handy for the meeting. Below is a sample checklist for meetings; your items may be different.

Item Your Agenda (see page 19) Food Utensils and napkins PHA educational handouts for information table Name badges and markers Sign in sheets (see page 21) Copy of Patient Survival Guide Disposable or digital camera Pens/paper

- 19 - | P a g e

Sample Meeting Agenda

1. Welcome (explain group purpose)

2. Housekeeping (location of bathrooms, etc)

3. Introduce PHA, membership, the PH Patient’s Survival Guide and related educational handouts

4. Read confidentiality statement

5. Icebreaker and introductions

6. Open up the floor for sharing and questions

7. Announcements, questions, wrap-up

Create A Meeting Agenda

At this point, you either have a speaker and topic, or “meet and greet” planned (see pages 11-12). You should have also requested information materials from PHA headquarters to put out on a table. Call PHA’s Front Desk, 301-565-3004 x746 or order free brochures through our store online, www.PHAssociation.org/Store. Think about how you want to run your first meeting. How will you open up the meeting? Will you talk about the goals and purpose of the group? Have you considered building in time for longer introductions and sharing? Decide the format of your meeting and create your own agenda. We’ve included a sample, but you should run the meeting the way you prefer. An agenda will help you keep track of meeting-specific goals. You can write your agenda on a chalk board, dry erase board or pad of paper. You can also print copies of a simple agenda to distribute (like the one above but without the words in parentheses.) The leader pictured right is reading the agenda before introducing the speaker.

- 20 - | P a g e

Every Leader Should Talk about PHA Membership Membership empowers individuals with tools and information; opportunities to connect with other patients, caregivers and medical professionals; and take action in the fight against pulmonary hypertension. Read this when you give updates at your meetings:

Are you a PHA member? PHA membership starts at $15 for individuals and $35 for families. We also have complimentary memberships available in case of financial need. Members receive Pathlight, discounts on the Survival Guide and select PHA Store merchandise, and much, much more. For membership details visit our website or contact PHA at 301-565-3004 x756 or [email protected].

Start the Meeting

Build in 15 minutes to a half hour for people to trickle in before you officially start. You may want to use this time for people to get food. Walk around the room and get people talking by introducing yourself, learning about the patients and connecting them with one another.

Welcome your members. Once you have a critical mass of people in the room (around the number of people you were expecting), start your meeting with a cheerful welcome and opening statement. For a first meeting, people may be nervous as they are meeting others for the first time. Write up short welcome remarks to help people feel response comfortable. Remember that people may arrive to the meeting with feelings of uncertainty or fear, but the goal is for people to leave the meeting uplifted. Share the story of the first time you met another patient or spoke to someone affected by PH (keep it short).

Go over the agenda (see page 19).

Make announcements and mention “housekeeping” items: a. Be sure everyone has a name tag and signed the sign-in sheet (see page 21) b. Point out the nearest bathrooms c. Comment on any parking restrictions or other related

information d. Remind people to kindly turn their phones to silent e. Explain materials and brochures on the table f. Distribute a copy of the Support Group Welcome

Brochure to all members

Introduce PHA, the Patient’s Survival Guide, membership and any PHA-specific resource you’d like to highlight that makes sense for the meeting topic, speaker or theme.

Fun Fact!

Over 85% of

our leaders use

a sign-in sheet,

like the one

shown on page

21.

- 21 - | P a g e

- 22 - | P a g e

Tips for Facilitating Conversation

Establish a safe and comfortable environment where everyone feels free to share.

Ensure that everyone can be heard.

Facilitate discussions to help shy people share and to prevent any one person from dominating the conversation.

Encourage group members to talk by asking appropriate questions.

Don’t push anyone to talk, some people may not be ready to share or may be dealing with a lot of emotions during the meeting.

Facilitate the “Meet and Greet”

Before people begin to discuss their experiences with PH, be sure to set the tone of the meeting and enable your members to feel that it is a safe space in which to share. Read the confidentiality statement to start your “meet and greet” or socializing time.

You can incorporate socializing with a brief ice breaker or you can go into greater detail by asking each patient to share their story if they’re comfortable.

The icebreaker: Start by asking each person to state

their name

where they are from

their connection to PH (patient, family member, friend, caregiver)

Give the option for patients to share their diagnosis story (when did they first notice symptoms, how long did it take to become diagnosed by a medical professional,) if they wish to share this information. This might take a long time for your first meeting, but it’s often the most valuable time for patients to get to know one another. This shouldn’t take as long at later meetings.

CASE STUDY: Embracing New People

“If there is a new person, I try to embrace them. I give a shout-out to them at the beginning of the meeting and get them connected by asking for their phone number and Facebook, if they have one. I continue to keep in touch with them after the meeting to keep them connected to the group and each other.”

– Tiffany Gunderman, Long Beach, Calif.

Support Group Leader

- 23 - | P a g e

Read the Support Group Member Agreement and Confidentiality Statement

We encourage leaders to read PHA’s “Support Group Agreement and Confidentiality

Statement” aloud at the beginning of meetings to ensure privacy during the meeting.

Any information or advice given to members by members or

supporters is only the opinion of the individual, and neither PHA

nor the support group leader will be held responsible for any

individual’s opinion.

All members are encouraged to seek professional medical advice

when they have a question concerning their own healthcare.

Because support group members share personal feelings and

information in these group meetings, each support group member

understands and agrees that no personal information will be

shared outside the group.

Does everyone agree with this statement?

Any members who do not agree may stay for any professional

talks during the meeting but must excuse themselves during

discussions.

- 24 - | P a g e

Pulmonary Hypertension Association 801 Roeder Road, Suite 1000

Silver Spring, MD 20910 Phone: 301-565-3004 • Fax: 301-565-3994

Patient-to-Patient Support Line: 800-748-7274 www.PHAssociation.org

Made possible by an Awareness Month Sponsorship by