- You'll need to set goals for your support group for children with a serious illness, and plan how best to meet them.
1. Reach children with similar illnesses.
2. Make the groups meet at regular and convenient times.
3. Make sure the groups are helpful and address the main concerns of the children.
4. Vary the type of the group by the ages of the children. - Talk to the social worker attached to the hospital or clinic that sees your child. He may not be able to give you names and contact information because of confidentiality, but can ask other parents of children with a similar illness to get in touch with you.
Go online to find the non-profit agency that deals with your child's illness. For instance, type "lupus" and "support group" into your search engine and you will find a web page devoted to the voluntary health agency for your child's illness. There may already be a support group near you, or there may be a way for you to reach other parents of children with a similar illness through the message boards or membership coordinator. The agency may be willing to send emails to parents in your area with the time and place of the support group meeting. The person in the non-profit agency who helps with regional support groups is usually called the "member services coordinator" or something similar.
Another way to find if children with the same rare disease as your child's is to contact the Naional Organization of Rare Diseases (NORD) at www.rarediseases.org. This organization operations a database of more than a thousand patient groups with rare diseases, and may be able to connect you with patients with their permission. If the disease is extremely rare, you may have to schedule a family trip to meet another child, or communicate with photos, phone calls and videos.
Many newspapers and radio stations offer calendar publicity for this type of an event free of charge for non-profit groups. Take advantage of this as well as requesting a feature story on the type of illness your child has in advance of the first meeting. Contact the health or feature writer at your newspaper. On television stations, the weather person usually has the job of helping with human interest stories, so try to convince him or her that the formation of a children's support group is worth covering. - If your child's serious illness is quite common, you may find several children right in your child's school or school district. After-school meetings work best in these cases.
For older children, meetings centered around a meal, movie or recreational event on weekends often works best.
If your child is hospitalized, day-time meetings in a space provided by the hospital will probably work best. - Make sure the groups are helpful and address the main concerns of the children. Some concerns expressed by children are: What is happening to me? Will I die? Is this my fault because I have been bad? Will I ever have a normal life? What can I expect from my treatment?
Meet with other parents to decide what kind of programs and speakers will best answer these questions. Allow plenty of time for informal sharing so children can answer each other's questions, too. It is tremendously beneficial for children with experience to be able to help those just beginning to understand their illness. - Pre-school children do best with just a simple play date with someone with the same illness. This allows them to observe that someone else has skin problems, or cannot walk without assistance, or has lost his or her hair.
Young school-age children do best when the group is facilitated by a child psychologist to direct the interaction and make sure it is supportive. Slightly older children should have a mixture of peer support and expert facilitation.
Pre-teens and teenagers often do better with online chat rooms, Facebook and Twitter for support, or they may want to keep an online weblog (blog) about their experiences and feelings.
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