Caregivers
Keeping The Doors Open…How to Run a Support Group Effectively
By: Cathi Lammert, RN - Executive Director of Share
Transition of Perinatal Loss Support Groups
In the late 70’s when Share was started, support groups were evolving in many areas of bereavement. In the beginning stages as the policies and protocol regarding perinatal bereavement were formulated, families gathered and shared their experiences. Not only were parents not offered all the options at the time of their losses we give today but often times they were not supported by their families and friends. Professionals often felt threatened by the support group process and were not as likely to refer parents to groups.
Today, perinatal loss support groups are widely accepted. In most health care facilities, perinatal bereavement protocols are established but occasionally parents will share they were not given all the appropriate options or were not treated with compassion. With the advancements in technology, perinatal loss issues have become more complicated as treatment choices have increased. Due to the results of their decisions, off shoot support programs have evolved to provide specific support to families whose babies are non-viable and have chosen to continue their pregnancy or interrupt it. All the issues regarding multiple pregnancy loss has inspired yet another support group network to evolve. Also, we may have very young teenagers who need specific support and information following the loss of a baby. The dynamics of our families are changing and blended family issues are increasing as well. Couples may postpone pregnancy or older single mothers may opt for surrogacy and the impact of their babies’ deaths may be compounded. Even after 20+ years of educating and increased public awareness, one thing that has not changed is parents’ sharing their experiences of lack of support from family and friends.
In this article, I will be sharing my experiences as a support group facilitator for over 15 years and the stories and experiences of other Share group facilitators. Since Share’s support groups are open ended, I will only address this type of support group. Specifically, open ended groups meet on a given day, at a given time and at a given location. Invited is anyone who has experienced the death of a baby. People may attend as many or as few times as they wish.(1)
Reasons Groups Thrive or Are Effective
I have found that if a family has had prior contact with the facilitator/group member, they may be more likely to attend the support group. This contact may have begun at the hospital. Many of Share’s support groups are hospital based. The same group of people who facilitate the group may also be primary caregivers of the families experiencing the loss. This is my personal experience. I spend a great deal of time with the families at the time of their loss and it is a natural process for many of them to attend the support group. However, some of our group members did not have their baby die at our health center but had a personal referral from their doctor, funeral director or friend. Sometimes, a warm phone conversation has been the stepping stone to their support group experience.
At the support group meetings, parents share with me they are attending because it is a safe place to express their feelings and their loss is validated by the members attending. A support group will flourish when other bereaved parents share their stories, their successes, their hurts and positive outcomes of their actions. When there is a threat of hope throughout the sharing, parents know they will survive this loss.
Parents are grateful for consistent group leadership. It is obvious to them if the leader is in the position because she/he truly cares about their loss and is not there because it is their assignment. Most support group leaders go beyond the call of duty. Also, as the leader you may not have all the answers but the group looks to you for some positive guidance. You need to know what other specific support groups are available. As an example, I once had a mom who attended my group who baby’s death was caused by her boyfriend’s abuse. She was devastated. In our community, there is a support group that deals with these specific issues, so we talked about this group and how it would meet her heart wrenching needs more effectively. Often times, families may ask medical questions. You may not have all the answers but it is helpful to have a professional advisor who could assist with finding the needed information. Also, families may be searching for a new OB or perinatologist or feel the need to see a psychologist. It is helpful to have a list of qualified professionals who will meet their needs. They may also look to you for help in finding appropriate reading material. If you are familiar with the books in your library, your positive direction to their specific needs will be appreciated.
Share meetings need to be organized and focused. A precursor for an organized meeting would be a mailed notification of the meeting and the topic or speaker. Parents appreciate meetings that begin on time with the materials and library set up. Often times those needing materials or some personal one-on-one time will arrive a few minutes early to visit or browse in the library. The members may have babysitters or a husband at home waiting for them so they appreciate meetings that begin at the scheduled time.
It has been found by researchers that support groups that address specific perinatal loss issues are more effective.(2) Meetings that try to address all the many issues and feelings of bereaved parents, such as loss of older children, the dynamics of a SIDS loss, pregnancy interruption, etc. are challenging for leaders, and often unfulfilling for parents. The ideal situation is specific support groups for these specific losses. However, the reality is this may not be possible and your group may be the only support available in your area. Facilitators who find themselves dealing with wide diversity in the parents’ losses within a group, will benefit greatly by educating themselves in the specific issues these parents face.
Reasons Groups Struggle
In wo rking with many Share groups over the years, I have seen some groups that were not able to get established on firm ground. Some of the groups were frustrated by the limited support they were able to obtain from their community. Many groups in the Share network are run by bereaved parents. I always encourage these parents to establish a relationship with the obstetrical, social work or pastoral care departments of their local hospitals. Also, the awareness of the local physicians is critical. If the doctors are not aware of the group’s services, they won’t refer their patients. Other hospital-based groups have not felt the support of the hospital nursing administration for the program which is very important for success. Some groups have discovered that their materials were not given to the families at the time of their loss.
Another factor may be the lack of a personal contact for parents before the first meeting. Some bereaved parents will have the persistence to seek out help but others will find this very difficult. And, if there is no follow-up program for the family after they leave the hospital, they may forget about the support group meeting. If the bereaved couple does attend the first meeting, it is important to make follow-up phone calls and/or send a personal note letting them know how glad you were to see them. It is also a good idea to send a quarterly update on the upcoming meetings and events. Many bereaved parents have shared with me this schedule is placed on their refrigerator door.
The group facilitator is the glue that keeps any group thriving. Occasionally, I will have group leaders tell me they are really tired and are aware of burn out. Parents look to the person in this role for positive guidance and direction and may sense the temporary lack of energy. Another deterrent is unresolved grief issues for the facilitator. All members of a support group grow together. However, if the facilitator is a bereaved parent and hasn’t had positive resolution of certain loss issues, the group members could be frightened and not feel a sense of hope.
Again, it is imperative that there is consistency in group leadership. If a group is blessed to have a team of facilitators, they each should conduct at least 5 consecutive meetings with an overlap of one meeting with the next facilitator. Parents look forward to building their trust with those in leadership roles and may feel frustrated if there is a new person as facilitator for each meeting.
Lastly, a facilitator may want to look at how the meeting is conducted. Is there only open sharing time or is there an occasional speaker or video presentation? Bereaved parents have shared with me they get frustrated only hearing other people’s stories. Parents also have shared they like the meeting to begin with a specific topic as it gives them some positive direction or support. But they like to have open sharing after the main topic has been discussed, so they can air their particular concerns, as well.
Ways to Improve Support Group Image
Ideally, one wants to enhance your support group’s relationship with the health center physicians, and any other caregivers involved with bereaved parents. Select a committee to assist you consisting of professionals and other bereaved parents that have integrated their loss. Your immediate goal is to increase awareness of your group’s mission plus highlight the need in your community. Some groups have been very effective with one-on-one meetings with their doctors, clergy, and funeral homes. Others have been successful providing half-day or longer workshops for the above, as well as all departments involved with perinatal loss. In conjunction with this workshop or meeting, distributing brochures and printed materials provide credibility for the group. In the case of a workshop, a parent panel is usually very effective as their shared positive experiences validate the need for your group. Being part of a national network, like Share, also increases the credibility. In fact, many groups use the National Share Office brochure as it has a space on the back page to print the meeting time, contact person and phone number for the local group.
Increasing the opportunities for personal contact prior to the group meeting is vitally important. Hospitals are rightly concerned about patient confidentiality and are reluctant to refer patients to support groups. A comprehensive check list that addresses patients’ choices and includes a release form for support can alleviate this issue. Many Share groups are hospital based so there is opportunity for personal contact at the time of their loss or within the hospital stay by the group’s facilitator. However, some of our parent-run support groups also provide one-on-one support at the time of the loss and have been widely accepted in the health care facilities. This provides a great service to the bereaved families plus is a bridge for the parents to the comfort level of the support group.
One major means to improve a group’s image is parents’ positive comments. There are several avenues for this. Letters written to the CEO of a health center, one’s doctor/nurse or to the local newspaper. Encourage your families to share their positive comments with the appropriate source. Also a feature story in the newspaper about the support group or an event, i.e., Walk to Remember or memorial service, provides insights to the community on the importance of your group’s mission. Professionals are more likely to refer patients to a group that is accepted by the community. Many times I have quoted our CEO’s comments, “Rarely does anyone thank me for the million dollar equipment we purchased for our health facility but often I’m stopped and thanked for our Share program”.
Ways to Maintain and Improve Membership
The hours before a bereaved mom/couple come to their first support group meeting can be stressful. They may be uncertain whether reaching out for support is the right decision or, on the other hand, maybe they can’t wait to finally talk to someone who understands. The first few minutes after they arrive are important. It is vital that someone greet all new members with a warm smile. If you have had the opportunity to visit with them before the meeting and you sense they are comfortable with hugs, it is okay to greet with hugs. However, some folks are not comfortable so a handshake is appropriate. Informal introductions as they enter the room are helpful, letting them know more complete introductions will come later. The newcomers need direction as to where restrooms are located, information and assistance in library checkout procedures, as well as sign-in and name tags for the meeting. Invite them to sit down and offer them refreshments.
When it is time for the meeting to begin, give a brief outline of the structure of the meeting, such as, “We begin with introductions, followed by a reading of the ground rules. Then we will have a speaker/video on the selected topic. The meeting will then be opened up to discussion of the topic plus any other concerns. Our meetings usually last a couple of hours.”
Begin introductions with yourself. Then ask a seasoned bereaved parent to follow. Let the members know that it is okay if they are unable to give their introduction. Some group leaders have told me that they have lengthy introductions with families sharing their full stories. If you have a speaker or a planned event, sometimes lengthy beginnings can sidestep the speaker’s presentation and discussion. Short introductions may help your meetings get off to a better start. I think it is important to let people know that they will have an opportunity to share later in the meeting. Always introduce your speaker and give his/her credentials, if appropriate, last and explain the topic of the meeting.
Ground rules should be read at every meeting. These guidelines establish the tone of your meeting plus you may need to refer back to them if a situation arises. The ground rules (3) that Share suggests are:
1. Each of your experiences are unique and valid. No one is here to criticize or analyze.
2. Feel free to share or not share your feelings and experience. We will not probe. If you have had a similar experience and care to talk about it, feel free to do so.
3. Note pads are available for you to write down any word or phrase which comes to mind. It is okay to write while others are talking; notes are for yourself and you will not be asked to share them.
4. It is okay to cry – there are tissues available and we ask that you be sensitive to your neighbor’s needs. We ask your permission to cry, too.
5. If you feel the need to leave, feel free to go. One of us will follow you out of the room to be sure that before you leave you are ready to drive.
6. Share your feelings about the meeting with your spouse – we do not want to create a communication gap, but rather increase communication.
7. The group time is not intended as a time for medical advice – if you have medical questions we will respond to them after the general meeting.
8. Should you wish to share a bad experience you have had with a hospital, nurse, or doctor, feel free to relate the experience. We would ask that you not use the name in the discussions.
9. After the short presentation, you may respond to what the speaker has said or open with anything you wish to bring up. We encourage you to respond to each other.
The time spent at the meeting can be a true means of healing. The topics chosen for the group should be thoroughly considered and thoughtfully planned. Sometimes it is a good to ask the group what topics they would like addressed but often you may hear some blatant clues. Recently, our group shared many concerns about their own parents so we chose to have a meeting focusing on grandparent issues. Our speakers were two grandmothers who had different experiences but shared how they survived and how they remember their grandchildren. We almost ran out of chairs and it was a very moving meeting.
Whatever your chosen topic is, when the speakers have finished, let the group know they can talk about the topic and share anything else that they choose to. Some people may have a situation totally unrelated to the evening’s topic that they are anxiously waiting to share. Perhaps saying “We’ve discussed quite a bit tonight but if anyone else has something to share, we’d like to hear it.” As the meeting draws to a close, it often is effective to summarize the evening’s discussions and point out some growth that was obvious.
Plan B – One night I had planned a meeting of sharing poetry and only one person brought her favorite poem which she shared. The poem was briefly discussed, however, there were three new couples at this meeting who were obviously hurting deeply. The topic changed in mid-stream to the challenges of early grieving. It can be therapeutic to share stories and have open-ended meetings, but I have had families tell me they stopped attending meetings because they did not find the needed direction they were searching for.
The formal part of the meeting usually has a natural closure at around an hour and a half. Often this is evident by a lull in the conversation or just a sense it is time to end. At this time the group leader can summarize, share next month’s topic and time, along with announcing upcoming events. This is an appropriate time for her/him to bring out snacks/refreshments. Parents take turns bring the refreshments so the cost is not incurred by the group leader. Some members may opt to leave at this point and others may connect with someone they have bonded with during the discussion. Others will ask the facilitator a specific question or check out the library. Social time may not be possible due to time constraints of the facility. I have seen meetings continue in parking lots or a favorite restaurant. If social time is a possibility, it should be encouraged. During these less structured, social moments following a meeting, I have seen looks that say “I know and care”, smiles and hearty laughs, sharing of one’s pictures or mementos, validation of a fear, sharing of e-mail address or phone numbers, an answer to a present fear, a previously quiet dad sharing with another dad and always, hugs.
Qualities of a Good Group Facilitator
Many potential facilitators call me to talk about establishing a support group in their community or at their health facility. I am always touched by their true concern for bereaved families. Many of them have walked the journey themselves or have seen the need to provide compassion and understanding to the families they serve. Some have never been in a leadership role but have a need to reach out to others. Often times, if they are a bereaved parent, this truly is a gift their baby who died has given them.
In James E. Miller’s booklet, Effective Support Groups, he lists several characteristics for a successful support group facilitator.(1) The list with its commentary abbreviated is as follows:
Caring and Compassionate – A facilitator must be interested and concerned about the people who compose the group.
Accepting and Nonjudgmental – A facilitator should be open to all types of people including every person who attends the support group.
Self Aware – A facilitator can know others only to the extent he or she knows himself or herself.
Adept at Listening – Effective facilitators listen much more than they speak. Since facilitators are modelers of behavior, the better they listen, the better their groups will listen.
Skilled at Communicating – When a group facilitator speaks, their words are noted both because they don’t speak a lot and because of their role in the group.
Observant – A skilled group facilitator is all eyes and ears, taking in all they can from every participant. They also pick up body language and what is not said.
Authentic – It’s difficult to overestimate the importance of a facilitator’s being real with the group. By truly being one’s self, it will allow others to be who they are.
Present – A group feels important and empowered when their facilitator is truly present to them.
Energetic – A centered facilitator brings their own energy to the group experience.
Optimistic – Believing in what people can do on their own and what the group can accomplish together maintains a hopeful presence throughout each meeting.
Continually Learning – A wise facilitator approaches each meeting time ready to learn. They’re drawn to new ideas, new perspectives and new discoveries. They are also comfortable realizing sometimes they will make mistakes and that is another way to learn.
At Ease With Conflict – They understand that conflict is a natural part of any group process. They don’t avoid it but bring it out in the open.
Able to Set Boundaries – A facilitator must be able to place limits on what they’ll do and not do, not only for their own good but for the good of the group.
Able to Give Self Care – Facilitators cannot give more than they have within them to give. So they must take care of themselves if they are going to be open and available to others.
In Touch With Spirituality – If it’s true that people have souls as well as bodies, minds, and hearts, then the spiritual dimension needs to be part of a facilitator’s life. This can be one more channel for their communication with others. Being open to the spiritual has nothing to do with sharing one’s religion with another. Rather, it has to do with the sharing of life as a gift, realizing that this gift came from somewhere far beyond.
If You Are Facilitating the Group Alone
Some facilitators lead their groups by themselves. Usually this happens with a small group and it has worked well. The members are grateful for the opportunity to have a support group and realize that without this sole person’s efforts the group would not exist. I always encourage the facilitator to organize a group and to focus mainly on support for families. As a sole facilitator, they may not be able to expand their group’s efforts until it has been in existence for a while then seasoned group members can assist as co-leader or volunteer as a helper.
The Dynamics of Co-Leading
The dynamics of co-leading within the Share organization has been pretty diversified. Some Share groups have been organized by several bereaved mothers or couples after their losses have been integrated into their lives and they are able to reach out to others. These groups are considered independent Share groups. Other groups, that are totally hospital based and supported, are run by a team of two or more professionals, which may include pastoral care, nurses or social workers. Lastly, there are some groups that are co-lead by professionals and bereaved parents.
Whatever the combination, each co-leader will bring his or her attributes, as well as a few weaknesses. Effort should be made to draw on the co-leaders’ strengths, as well as being in tune to the weaknesses. Your individual talents and strengths may very easily complement each other. It helps to communicate what you expect of each other. Sit down and talk about what each of you feels comfortable doing, i.e., one may prefer organizing the meetings and another may enjoy greeting the parents. If this is comfortable to all, talk about rotating the roles. If someone becomes overwhelmed by emotion at a meeting, the extra facilitator can be available to offer individual support. After each meeting, it is always beneficial to discuss the dynamics of the meeting, concerns that arose within the group and plans for the next meeting. In addition, by sharing the responsibilities and joys of the group, you have an immediate confidant to process your own feelings as a caregiver.
(1) Miller, James E., D. Min., Effective Support Groups – How to Plan, Design, Facilitate, and Enjoy Them, Willowgreen Publishing, Ft. Wayne, IN 1999
(2) Calderone, James, Dissertation, Leadership Characteristics and Membership Satisfaction in Bereaved Parents Support Groups, October 1991
(3) National Share Office, Starting Your Own Share Group, fifth edition
