How to Start and Maintain a Support Group

1. How to Start and Maintain a Support Group By Stephanie Lerner-Ernsteen, MSW, LCSW Evanston Hospital, Evanston, IL

2. Contact information Stephanie Lerner-Ernsteen • E-mail Stephy13@comcast.net • Home phone 847-236-1997 • Voicemail 847-570-1800 ext. 809 Becky Hatfield • E-mail Becky.Hatfield@hsc.utah.edu • Work phone 801- 581-2098 Support group consultation available

3. For Further Information • About This Curriculum, NPA Publications or Membership • PLEASE CONTACT • National Perinatal Association • 3500 E. Fletcher Ave. Suite 205, Tampa, FL 33613 • Toll Free: 888-971-3295 Fax: 813-971-9306 • Website: www.nationalperinatal.org Email: npa@nationalperinatal.org

4. Why start a support group? • Support groups can increase acceptance of a difficult situation and give families resources to help them cope. • Support groups can provide a safe environment in which families can share their feelings. • Support group participants may feel less alone because they see others going through similar experiences. • Support groups may offer comfort in a way that family and friends who haven’t experienced the trauma are unable to. • Support groups empower members to solve problems and give practical tips to help. • Support groups encourage parents to become advocates for their families and for themselves.

5. Types of Support Groups Support group can meet a lot of different things, in fact some of the most successful support groups, don’t identify themselves as support groups at all. Instead they are arts and craft nights or pizza socials. Types of support groups: • One to one support-via telephone or e-mail (how I match families) • Therapeutic support groups • Informational support groups • On-line support groups • Newsletter only support groups • Community based groups • Hospital based groups • Agency based groups • Social group • Many combinations of the above

6. Questions to ask Before Starting a Group • Why do we want to form a support program, what is the purpose of our group? • What do we hope to achieve or provide to members, what are our goals? • Who are we trying to reach, who will be our members? • What type of support group do we want to have? It is often better to start out with one idea and than when it is successful expand. Trying to do too much at the beginning, can set you up to fail. • Find out if there is another local group that is already serving your population. Find out if there is a national group that you can create an affiliation with. • Decide what kind of leadership you want. Will you have a mix of professionals and parents, or just professionals or just parents?

7. Planning a support program • Find other people who share your interest and enthusiasm. • One person can not do it all themselves, believe me, I have tried! • Send out an interest survey • After you have gathered interest, set up an initial meeting to set the guidelines for your group. Some groups like a lot of structure, other groups won’t want so much structure. • Whether you choose to have structure or not, there should be a clear leader of the group. This person can have a title of coordinator, chairperson, or president.

8. Other group leaders • A secretary • A treasurer • A Historian • A Librarian • A membership chair • A publicity chair • An outreach chair • A program chair • A fundraising chair • A newsletter editor • A website chair

9. In addition, your group should decide on a central contact person or phone number. Voicemail, e-mail and P.O. boxes are very good for this. I used to only give out my home phone number and people were shy to call, since I got a voice mail number, I receive a lot more calls.

10. Nonprofit or not? • Obtaining non-profit status helps a group to receive donations that are tax deductible. • Most foundations and corporations will not give money to a group that does not have a tax id number. • Being nonprofit will also allow a group to not have to pay sales tax. • It is important to have an attorney or CPA to help you with your tax exempt status. The bar association has lawyers who will have groups do this pro bono.

11. Choosing a name • Your name should reflect our purpose and membership. • Shorter names or a name that can be shortened to an acronym is easy to remember. For example, I am on the board of directors for the national perinatal association but we call it NPA. Through NPA I co-chair the Family Advocacy Network, which we call FAN.

12. Setting goals • Successful programs have clear ideas about what they want to accomplish and what they want to provide members. • These goals may change overtime. • It can be helpful to draw a timeline for what your group would like to achieve in three months, six months, in a year and in five years. • Be sure to evaluate your goals on a regular basis. You may want to change them.

13. Decisions need to be made about meetings: • Do you want meetings to be weekly, monthly, bimonthly? • How formal do you want the meetings to be? • Do you want to have speakers to listen to or do you just want your group to talk with each other? Or, do you want to do a combination? • Where are you going to hold your meetings? At a hospital, at a members house, rotate cites, at a church, etc. • Do you want your meetings to be the same time of day each time, or do you want to change the time each month to reach different people?

14. The First Meeting • The first meeting will be an introduction in which you should talk about why this group is being formed. • Attendees should be encouraged to share their story and to tell what they would like to see the groups goals to be. • Not everyone who attends the meeting will want to take on leadership roles, which is okay. • Be sure to gather everyone’s contact information and a list of what people are willing to help with. • You may want to have a list of tasks written down and have people say which they are willing to help with.

15. Future Meetings • Future meetings will completely depend on what your group decides and may change over time. • No two groups are run the same way. • Sometimes there may be a formal session with a guest speaker on a specific topic and other times there may be just participants talking with each other and sharing their own life experiences. • Most successful groups mix up lectures with social and emotional sharing sessions.

16. Ways to communicate with your members • By telephone • By Newsletter • Web-based communication

17. Parent to Parent Support-floor visits • Procedures must be established • What to bring on a floor visit • Gifts for the families • Resource book • Pamphlet • Business cards • Patient satisfaction forms • Newsletter • Welcome card • Volunteer

18. Creating a Budget The group should ask where you need to spend the money. Some items that you might need in a budget are: • Printing and mailing newsletter • Maintaining and starting website • Social events • Funding a lending library • Telephone expenses-including answering machine or voice mail and long-distance calls • Office and storage space if not in someone’s house • Paid staff • Refreshments • Special projects

19. Ways to raise money • Dues • Sponsorship • Donations • Fundraisers • Grant writing

20. Why is Volunteer Training Important? • Training can educate your volunteer on volunteer procedures • Training should teach active listening skills. • Training may help the potential volunteer to recognize and cope with potential difficult situations. • Training allows potential volunteers time to process their own experiences and helps them to recognize how past experiences may impact their volunteer abilities; and • Training helps to minimize liability and confidentiality issues because we screen people who we feel should not be a volunteer and we talk a lot about confidentiality and have our volunteers sign a confidentiality agreement.

21. So, Who should volunteer? • Be emotionally ready to talk about their own crisis • Be good listeners, allowing other to talk • Be open-minded, allowing others to have different opinions • Exhibit emotionally stable characteristics. • Accept people with different cultural, ethnic, religious, or socioeconomic backgrounds. • Not have a history of contention, discord or dissatisfaction with the support program or the organization with which the program is affiliated.

22. The format for conducting a training workshop • Trainings should be done in pairs. • Potential volunteers should tell their story. • Ask your volunteers questions and give them potential situations that they may face. • Tell procedural information. • Allow time for questions. • Leaders should consult each other to see if there are any “red flags”. • Follow up with families.

23. Questions for Training Parent Volunteers • Are there any issues from the early NICU days that continue to rankle you? • Do you have any hot buttons-issues that you hear people talk about that really still irritate you? • How would you handle someone whose religious views were very different from your own? • How would you handle a parent who would not visit their baby or visited their baby in a very different way than you did? • What if the doctors of the baby prescribed something that you knew to be controversial? • What if you had a parent who was extremely angry and possibly talking about suing their doctors and the hospital? • What if you had a parent who was very depressed and possibly suicidal? • What if you had a parent who exaggerated their child’s story and seemed to not always be telling the truth? • What if you had a parent who wasn’t given proper medical information or attention? • What if the mother refused to breastfeed or had problems with it? • What if the mother fears that she caused her babies condition? • What if the mother tells you that she doesn’t feel like a parent? • What if the baby dies?

24. Important Points to Remember • What was helpful to you while you were in the NICU? • What was not helpful to you? • Allow the parent space to determine the pace of the conversation. • To seek help for yourself if you have questions or your feelings get triggered-this will happen! We should be contacted for any families who suicide or other serious events may occur. If you ever have a question or concern call. • Remember to listen for context not just content of conversations. People may react in many different ways because of fear and stress. Try to think of the feelings, not just the words. • We are not here to give medical advice! We can give a parent resource information and advocate for them to ask questions, but we cannot and should not give medical advice or advice about the care of their baby. • Let the other family tell their story and ask questions without you offering more than they ask. If you give too much information about your story or what to expect in the NICU, you may unknowingly scare the family.

25. After we are done with all of these questions, we let the volunteers know about the procedure for volunteering and we ask them if they have any questions. • We always have a post training session where we talk about each potential volunteer to see if any red flags were raised.

26. Sustaining a support group All support programs can be tremendous help to the participants, but they need good direction in order to achieve their goals. Here are some tips from some successful groups: • Through volunteer training you can hopefully eliminate liability and confidentiality issues that may arise without really knowing your volunteers. • If you are working closely with an organization, it is important to establish a trusting relationship. • Periodically evaluate your program’s progress (or lack of). Have your goals been met? If not, why not? • Avoid burnout by recruiting new members, dividing and delegating the work, and frequently shifting the workload. • Avoid becoming a club unless that’s your purpose because it may alienate others from feeling comfortable to join. • Let your volunteers know that they are appreciated. • Network with other programs similar to yours and share ideas by setting up brainstorming sessions and hosting informational nights. • Welcome criticism and agree to disagree. • Encourage the development of leaders through trainings, by joining organizational memberships, and by attending conferences.

27. Tips for a successful support group • Ask yourself, “would I have wanted these services? “ If yes, do whatever you have to, to make it happen. • Be comprehensive-don’t just include preemies. • Use your newsletter as your soap box to tell your group of the lessons that you have learned. • Don’t charge members-include all, you never know whom you are reaching. • Listen to everyone’s ideas. • Have trainings for volunteers. • Don’t be afraid to ask for more. • Butter up nurses and hospital staff. • Give money to needy families. • Find ways to break down barriers to providing help. • Don’t expect everyone to be as dedicated as you are. • Use the computer to organize everything. • Professionalize yourselves both in materials and in training. • Delegate out-don’t do it all yourself. • Be active on a national level. • Learn what other groups do