Written by Megan Bronson RN, MSN, CS on November 05, 2019
It is well documented that support groups are helpful to people dealing with a broad range of life challenges, losses, and traumas. For burn survivors, finding a supportive group of people who understand the long journey back after a burn injury and who can therefore offer hope and direction in the process of recovery is a godsend. Support groups can decrease the sense of isolation and stigmatization that many burn survivors feel. Being a part of a support group can be the first step in reconnecting socially after burn injury. Every journey begins with a single step, and the step of finding a healthy and healing support group is often an essential one for burn survivors, their families, friends, and caregivers.
1. PLANNING
Sample Goals (for facilitators)
To create a “safe” and accepting environment for participants.
To provide an environment in which participants can feel comfortable sharing their burn and recovery related experiences.
To use a mix of purposeful activities and discussion/sharing through which participants can develop coping skills and social skills
To help children build bonds/relationships with group members for ongoing support and belonging
To create a format and environment in which children/teens have repeated attendance/ participation in group sessions.
Pre-Plan Your Activities
Icebreaker or collaborative group task. Basic icebreakers can start a group off on general participation. (Examples: Name games, Human Bingo, etc. Consider using an activity or task that requires teamwork and participation of all members. While icebreakers are helpful in getting the group to be more generally comfortable, actually working together at a collaborative task will further gel the participants’ relationships. Relationships and teamwork help make those bonds that cause children to truly feel more comfortable and safe for sharing and discussion, and for repeated group attendance. For additional ideas, please refer to the reference list at the end of this handout. note: Be ready with several icebreakers/ collaborative tasks in case your group appears to need multiple introductory activities.
Focus activities: facilitate a tangible experience or produce an object for reflection and discussion. this will provide opportunity for participants to create, reflect, and produce something they can talk about during your discussion/processing section.
Examples of activities: Family tree, personal coat of arms, worry dolls, dream catchers, choose a photo from a pile of examples and re-draw it according to your own reality, personal drawing puzzles (represent a certain topic, then break apart and discuss meaning of this), body drawings, tracings of our shoes/drawing our path, read a book together followed by discussion (“My Many Colored Days” by Dr. Seuss (feelings), or “Sometimes I’m Bombaloo” by Rachel Vail (anger/acting out), “Just Kidding” by Trudy Ludwig (teasing/bullying), or “A Terrible Thing Happened” (trauma witnesses) for siblings, or so many more activities. For additional ideas, please refer to the reference list at the end of this handout. note: Preparing several versions and adaptations of your focus activity will help you modify directions or content to meet the needs of your group during the session.
Take-home activities: Some participants will want to continue working through their feelings after the group experience/between group sessions. Consider providing a journal (for picture drawing or writing, depending on participants’ ages), helping the children to start a scrapbook, or a semi-structured workbook—there are several emotional processing-type workbooks listed in the reference section.
Also consider some type of handouts for the parents that will give them ideas on some of your focused activities and suggestions of how to create an environment for open dialogue processing for the child or adolescent.
2. IMPLEMENTATION
Set the Tone
Provide a basic, age-appropriate introduction, such as: “In this group, we all have something in common: all of our lives have been impacted by burn injury. We’ll use our time together for sharing, listening, learning from and being supportive of each other.”
Introduce “Ground Rules” for the Group
We take turns speaking here. One person talks at a time. Everyone can speak if they want to, but no one has to talk.” Consider using something tangible (such as a talking stick) to represent the speaker’s turn.)
All feelings are okay. No one’s feelings are ever wrong. They are what they are, and that is okay here.
The Platinum Rule: Treat other group members as they would like to be treated. If you are unsure, how someone wants to be treated, ask them! (This will help you meet each child/teen “where they are” in the context of a support group).
What is shared in this group stays in this group. Ask group members for their commitment to confidentiality. If people come in late, briefly mention boundaries to them also. Exception (be sure to say this): “I care a lot about helping you. If you tell me (and/or the group) something that I think is dangerous or unsafe for you, I have to help protect you by telling another adult who can help. I want to help keep you safe and help to make sure you’re okay.”
Invite participants to add ground rules if appropriate; this is your judgment.
Introduce and Facilitate an Activity (Optional but Recommended for Most Age Groups vs. Pure “Discussion-only” Group Time)
Icebreaker or Collaborative Group Task - Use a task or activity that requires teamwork and participation of all members (such as completing a puzzle together, without using hands, or without using words). While icebreakers are helpful in getting the group to be more generally comfortable, actually working together at a collaborative task will gel the participants’ relationships. Relationships and teamwork help make those bonds that cause children to truly feel more comfortable and safe for sharing and discussion, and for repeated group attendance.
Focus Activity - Facilitate your activity (project, reading a purposeful story, etc.), be attentive to participants’ attention span, grasp of material and instructions, need for assistance, changing directions, and session timing. Be sure to leave time for discussion and processing.
Discussion/Processing Time
Use open-ended questions. A few examples:
Who would like to tell us 2-3 sentences about their project?
Can you tell us more about that ____________ ? (be concrete)
What did you learn by making/doing today’s project/experience?
What (if anything) are you planning/hoping to share with your family about (today’s project or experience)?
What might be easy or difficult about sharing this with your family?
What have you learned or said here in group that you want your family/classmates/friends/etc. to know?
Link your participants’ experiences: Has anyone else had a similar experience?/Does anyone feel the same way?
Invite all participants to share: Make sure that all have opportunity to speak; be aware of children who might dominate the conversation. (Avoid going around the circle in a particular order; this forces participants to speak before they are ready to share). Invite the shy/quiet participant to speak: Use targeted eye contact and a gentle verbal invite (such as calling the child by name) to share for participants who have not had a turn.
Again, a tangible “turn-taking” object is helpful here (such as a talking stick).
Closing
Thank participants for their participation, work, and sharing (cite specific examples if appropriate)
provide information for next meeting, mentioning specifics and enticements for attendance (highlight exciting plans or incentives). Also assign “roles” for next time if appropriate “e.g., Johnny can help with the snack, Susie can help lay out the materials, Joey will help with chairs”
If your participants are doing journals, scrap books, or other projects at home, remind participants of the value in this work.
Leave open-ended offer for help/support (or getting further help) if needed between now and next group time. For example, if you are available to talk to participants via phone, or if issues arose which participants may need to discuss with a parent or trusted adult, encourage them to do so with concrete suggestions. (Note: This could also be a private conversation with a particular participant if appropriate).
3. RECOMMENDATIONS AND NOTES
Creating the Environment
Minimize distractions
Be aware of what is going on outside the windows, the light level, background noise, etc. Make sure all children have put away other objects and possessions.
Respect children’s physical boundaries
Ask permission to hug or touch. Listen while people are sharing. With older children and teens: ask permission to comment on something someone else has shared or to ask them a question. It is fine to let others know that you would rather they didn’t comment on what you shared. Advice-giving: different way of listening; be with the person, not trying to fix it.
Use of a tangible object (such as a talking stick) will help to keep the focus on one speaker at a time.
Small group size is beneficial
A small group, especially with children, can be an asset to ensuring comfort, participation, and management of behaviors during the group. While many would judge the success of an ongoing group solely on attendance rates, know that regular attendance and active participation from a smaller number of children is a legitimate measure of success.
Close the group process
Thank people for attending, sharing and listening to each other. Remind the group of commitment to confidentiality. Suggest/provide/offer children and adolescents a safe and appropriate outlet for continuing to express their feelings outside of the group setting. (Suggest talking to a supportive adult, drawing, or writing in a journal, etc.) If there is a plan for group to continue/have future meetings, be concrete with plans (say it, write it, give it (on handouts)).
If the group occurs within a camp setting (or other time-limited contact), praise participants for their sharing and how well they have bonded as a group; provide tangible examples of other ways that they can work together and support one another during the rest of camp.
Suggestions for Overcoming Common Challenges of Support Groups for Youth
Participants’ age groups are too diverse:
Consider offering two (or even three) separate group sessions. Share the facilitation tasks with professional peers, or possibly schedule back-to-back times so that families who travel for group will only make one trip. If you must keep a large variety of ages in one group setting, consider having consistent or occasional small group break-out sessions for tasks or discussion of more sensitive topics (such as intimacy for teens). Knowing your participants’ needs and dynamics will help you judge this.
Attendance is sporadic (due to distance, time, school commitments):
Children/teens will ultimately be reliant upon their families for transportation to group. Offer parking or gas cards to ease the financial burden of traveling to the group location, and provide food if possible. Strongly encourage attendance but do not require it or shame participants who are unable to consistently attend. If you are able to offer attendance via Skype (free videoconferencing) or similar options, this could link in participants from greater distances. (Be sensitive about your activities if you have children participating via videoconferencing so that they do not feel left out). Also, consider regional support groups that are closer to home areas for participants; whether you are able to travel to facilitate these or utilize a more local professional resource.
Sibling dynamics (two burn-injured siblings or one with burns and another without):
Find out the background on your participants. You will likely begin to see issues that occur in the home setting (such as jealousy or one dominant speaker). Make sure to verbally recognize all participants as a part of the group, noting that everyone impacted by a burn is a survivor. Be sure to invite all siblings to speak in an equal manner. You may choose to have breakout sessions during group, and could offer a sibling small group for more focused discussion topics.
Some children/teens do not actively choose to attend group (their parent/guardian makes that choice for them):
Recognize that participation level could reflect this factor; parents/guardians requiring attendance removes the child’s control. When possible, provide choices and control to the child. Be sure to verbally recognize your gratitude for their attendance and use tangible examples of how they make a difference to the group. (Example: “I’m really glad you came tonight. You really helped the group solve the puzzle exercise with your idea. I know [other group member] like seeing you here too.”)
Continued reluctance of children/teens to “open up,”participate, or share:
Invite guest speakers whose stories and discussion style sets the tone. Infuse a few “peer mentor” style participants (of the same age group or only slightly older than participants) whose own sharing/participation can help members to open up
The environment seems to be a barrier for attendance; burn center vs. foundation vs. neutral community environment:
Consider the fact that many children and teens experience anxiety at entering the hospital/clinical setting. Even attending a potentially fun and supportive event like a group can evoke these feelings and may cause the child not to attend group. On the other hand, foundations and other community locations do not automatically provide the association of a supportive and caring place for new participants. Balance these issues; continue asking participants and caregivers for input.
Participants express need for support between meeting times or at home:
Discuss options with the child’s parents/guardians, offer school reentry type support (remember, school reentry programs are useful at each change of peer group or even with new teachers). Consider developing a local mentor for the child, teen, siblings, or family. This can help provide a local resource for assistance with reentry into the home community. Suggestions include a teacher, fire fighter, a SOAR(trained peer support) volunteer etc. (who you have screened to be appropriate for interactions and basic support)
Keeping a group fresh/exciting/interesting, meeting after meeting is a challenge:
Keep basic elements routine/predictable/safe so that participants can comfortably know what to expect. Infuse guest speakers, new activities, and a variety of media and sensory activities (movies, physical activities, creative projects, etc.) to keep content fresh. Many professional organizations have forums for information-sharing; talk with professionals in your area and across the country to share ideas!
Participants gain a great deal from the group process at camp/time-limited setting, but have no follow-up. Encourage your local burn center or foundation to provide aftercare programming throughout the year (ongoing support groups, regular camps, family days, etc.). Online tools such as the Phoenix Society chat room can offer a safe/secure forum for further support and meeting up with fellow campers. Provide a tangible memento of the experience that participants can take with them. Having a token from the experience can be a reminder of the benefits of opening up, sharing your story, having confidence and support, etc. (Example: Each participant has a “Great things about Johnny” list which everyone has an opportunity to write on).
Developmental Considerations for Talking and Listening With Children
Self Efficacy: a person’s belief in his or her ability to succeed in a particular situation. If a child/teen believes s/he can be successful in a particular situation (such as dealing with a bully or facing classmates for the first time after burn injury), this belief helps determine how the child thinks, behaves, and feels. (Albert Bandura)
In support groups, children can experience a carefully managed social setting which affords them the opportunity to succeed; transferring this experience into their school, home, etc. is an invaluable tool. If they can feel safe, happy, and successful in support group, this impacts their ability to go back to their home setting successfully. Facilitators can help shape these feelings of success and build skills for children to use at home/school.
Developmental Stages and Implications for Support Group Settings
Notes: Chronological age might not match developmental stage. It is normal for children and teens to experience some (temporary) developmental regression during times of stress. Human beings go “backwards” in their reactions and ability to process their emotions and external information when stressed!
Knowing these facts can help in your use of language and in building on the strengths that accompany each stage. Note each child’s functional level, recognize their struggles and celebrate their successes based on their milestones as well as valued and unique individuals.
Needs maximum comfort with minimal uncertainty to trust himself/herself, others, and the environment
Basic Strength: Drive and Hope
Existential Question: Can I trust the world?
Application in support group setting: Children will likely be past this developmental stage when attending a formal group setting. However, keeping this in mind for siblings in the home (who were also burned or otherwise impacted by the injury) can also help you to understand your participants’ home dynamics. At this stage, children are learning to separate from parents/trusted adults and to feel safe and comfortable in the presence of others.
Works to master physical environment while maintaining self-esteem
Basic Strengths: Self-control, Courage, and Will
Existential Question: Is it okay to be “me?”
Application in support group setting: Look for participants’ focus on mastering tasks during activities; frequently children in this stage will imitate others’ performance as examples for their own. What to do: Provide positive feedback regarding their capabilities. (“You are doing a great job following the steps on this project. I like how you are doing x. . .”) Also, reinforce their capability to handle situations such as staring or dealing with fears. (“You’ve got some great words to help yourself when someone looks at you. Remember how you told me what you’d say?. .”)
Begins to initiate, not imitate, activities; develops conscience and sexual identity
Basic Strength: Purpose
Existential Question: Is it okay for me to do, more, and act?
Application in support group setting: Participants will begin to use their own ideas for performance and tasks; they will display more ideas that deviate from others’ opinions; they will be more aware of “right” and “wrong” (and learn whether adults will support their assessment of right and wrong, tattling on peers), facing guilt and blaming themselves for events (such as an accident that caused a burn injury), even when there is no causal link. Siblings can also experience guilt at this level and beyond (“I was mad at my brother and used angry words, then he got hurt. It’s my fault.”). Additionally, children begin to differentiate stereotypically male and female behaviors (girls play with dolls, boys play with trucks, etc.).
What to do: Be concrete in your directions and expectations, allowing participants to clarify understanding. Praise participants for their capabilities (be concrete). Be concrete in clarifying situations which seem to cause guilt or feelings of inability, and validate the children’s logic and thoughts. (example: “Accidents happen; The fire/your brother’s injury was not your fault, you were not even present when it happened”, etc.)
Tries to develop a sense of self-worth by refining skills
Basic Strength: Method and Competence
Existential Question: Can I make it in the world of people and things?
Application in support group setting: Participants assign self-worth to ability successfully manage situations and complete tasks. Frustration with struggles and blaming oneself for perceived failure can be an issue. Also, having to rely on a parent to complete basic tasks after burn injury (such as assistance in eating or getting dressed) can cause great frustration linked to this developmental need.
What to do: Provide opportunities for success and competence. Be aware of the level of difficulty of activities and have modifications/adjustments ready (physical alterations or otherwise). Utilize activities which allow participants to have a defined role in activities to reinforce their strengths and abilities.
Tries integrating many roles (child, sibling, student, athlete, worker) into a self-image under role model and peer pressure
Basic Strengths: Devotion and Fidelity
Existential Question: Who am I? What can I be?
Application in support group setting: Participants will associate their identity, self-esteem, and value with activities and roles. Frustration can arise when these identities don’t match/when expectations for different roles don’t match.
What to do: Be aware that burn injury can remove some roles, such as athlete, or a level of confidence in one’s own value. Use group time to reinforce the roles participants play (example: “John is great at analyzing the overall situation. He always helps the group work out puzzles. Or John, you’re really great at providing understanding to other group members. You are a valuable member of our group and we appreciate that about you.”). Provide opportunities to discuss “who I am” and “where I’m going” for participants in this group.
Web Sites, Printable Handouts, and More Extensive Resource Lists:
The Phoenix Society: http://www.phoenix-society.org is the only national organization helping burn survivors everywhere get back to living. You can visit the website for a wealth of information.
Centering Corporation and Grief Digest Magazine: http://www.centering.org: grief support resources and workshops
Self Esteem Shop (resource collection for purchase): http://www.selfesteemshop.com : independent bookstore that caters to mental health professionals and those they serve
Compassion Books: compassionbooks.com books, DVDs, and audios to help children and adults through serious illness, death and dying, grief, bereavement, and losses of all kinds
Books:
“101 Fun, Creative, and Interactive Games for Kids” by Steven Peck
“Brave Bart: A Story for Traumatized and Grieving Children” by Carolina Sheppard
"Changing Faces: the Challenge of Facial Disfigurement” by James Partridge
“How to Talk So Kids Will Listen and Listen So Kids Will Talk” by A. Faber and E. Mazlish
“I Know I Made It Happen: A Gentle Book About Feeling Guilty” By L.B. Blackburn/Centering Corp
“Just Kidding” by Trudy Ludwig
“My Many Colored Days” by Dr. Seuss
“Quick Crowdbreakers and Games for Youth Groups” by Group Publishing.
"The Revised & Expanded Book of Raccoon Circles” by James Hallie Cain and Thomas E. Smith
“Severe Burns: A Family Guide to Medical and Emotional Recovery” by Andrew Munster
“Sometimes I’m Bombaloo” by Rachel Vail
“Sticks and Stones: 7 Wasy Your Child Can Deal with Teasing, Bullying and Putdowns” by Margaret M. Holmes
“The Struggle to Be Strong: True Stories by Teens About Overcoming Tough Times” by Al DeSerta and Sybil Wolin
“Support Groups for Children” by Kathleen O’Rourke and John Worzbyt
“A Terrible Thing Happened” by Margaret M. Holmes, Sasha J. Mudlaff, and Cary Pillo
“Words Will Never Hurt Me; helping Kids Handle Teasing, Bullying and Putdowns” by Sally Northway Ogden
Brief Author Bio: Jessica Irven, m.S. is a Licensed and Certified Recreational Therapist and Certified Child Life Specialist. She has worked with children, teens, young adults, and families in various settings for over fifteen years, and has worked in health care (both medical and mental health) for over 10 years. Her experience in the hospital inpatient, outpatient, and community settings includes burn center work and pediatric aftercare as well as workshops for young adults, families, burn camps, and retreats, both in the U.S. and abroad. She is a firm believer in seeing “what can be” in people and in using a mix of purposeful activity, supportive interactions, and individual reflection and growth as part of the coping and healing process.