New National Organization Addresses Unmet Needs of Siblings of Children with Cancer; Study Finds Siblings Also Require Healing 5/3/2004
From: Regan Hall Reinerth of GCI Group, 312-424-5313 or rreinerth@gcigroup.com or Jed Weiner of SuperSibs!, 847-392-4186 or jed.weiner@comcast.net HOFFMAN ESTATES, Ill., May 3 -- Each year more than 16,000 children are diagnosed with cancer in the United States. And each year, 18,000 brothers and sisters of these children are thrust into a world of experiences that leave a lasting mark on their lives. Recently published research indicates that 63 percent of siblings of children with cancer experience emotional and behavioral problems after the diagnosis. Additionally, younger siblings have higher levels of depression and anxiety than the ill child, according to the research. "The needs of siblings of children with cancer are greatly underestimated," said Melanie Goldish, mother of two sons, one a cancer survivor, and founder and executive director of SuperSibs!, the first national, nonprofit organization dedicated to providing support services to siblings of children with cancer. "As the support network of family, friends and medical professionals focus on the child with cancer and his or her needs after the diagnosis, siblings of the ill child are often unintentionally ignored. Caregivers may not be aware of the emotional strain the healthy child is experiencing due to the overwhelming amount of concern and attention being placed on the child with cancer." According to a study published in the March 2004 issue of "Child: Care, Health and Development," siblings of children with cancer participating in group-intervention sessions experienced an 80 percent reduction in anxiety, were better able to cope with their brother or sister's cancer and express their feelings to others. "Providing siblings of cancer patients with an emotional outlet can dramatically improve their well-being and help them as they go through the difficult process of having a brother or sister with a life threatening illness. This support also helps these brothers and sisters through the healing process," said Deborah Bond Berk, M.S.W., LICSW, senior social worker, Division of Pediatric Psychosocial Services at the Dana-Farber Cancer Institute. Goldish observed first-hand the effect a child's cancer can have on a sibling: she watched as her son Spencer struggled with his brother Travis's cancer. Spencer was moved to a different school and uprooted from his friends when it became necessary to live closer to Travis's treatment center, made endless trips with his brother to the hospital and stood by and watched as the chemotherapy wreaked havoc on Travis's body. A trophy sent to Spencer by a friend of the family in honor of his courage and love inspired Goldish to create SuperSibs! "I'll never forget the pride on Spencer's face as he opened his trophy, and to this day it remains a source of validation and strength for him," said Goldish. "I realized that this type of recognition was something we had to do for as many of these 'shadow children' as possible. It's amazing that from a terribly painful life challenge came a beautiful opportunity to uplift others." In the spring of 2003, Goldish launched SuperSibs! in the Chicago and Milwaukee areas with the mission to support, honor and recognize brothers and sisters of children with cancer. In its first year, SuperSibs! served nearly 500 children and has now expanded its services nationwide. "Bringing smiles, a sense of engagement, belonging, pride and self-esteem to these kids who often feel insignificant and left alone on the sidelines help give these brothers and sisters a vital boost that can change their outlook on life," said Goldish. The organization offers a variety of resources for children between the ages of four and 18 to help them cope with their sibling's cancer. Services include age-appropriate journals to help children express their emotions, "courage" trophies to honor and recognize the important role they play in their brother or sister's fight against cancer, and SuperSibs! Smilecards made by public groups and sent to SuperSibs! kids as a reminder that someone is thinking of them. Welcome packets are sent to parents and the SuperSibs! once they have been referred to the organization. A comprehensive Web site helps families learn more about the organization, and educates the public about how to include and acknowledge the siblings as their families face pediatric cancer. Emily Fergus, age 14, became involved with SuperSibs! after hearing about it from her father. Fergus's brother has been fighting cancer for the past seven years. "I met with a small group of kids my age and it helped me realize that I'm not the only one going through this and that it's okay to feel the way I do. SuperSibs! has become so important to me. They truly help us siblings feel not so alone." "It's amazing to me how much something as simple as a card from SuperSibs! means to my daughter Kathryn," said Julie Johannsen, mother of eleven-year-old Kathryn and her twin sister Hollis, a childhood cancer survivor. "It's very different than when she gets an occasional card from someone else because she knows that SuperSibs! understands what she's going through and the cards and gifts are a tangible reminder that she is not forgotten." SuperSibs! helps children redefine the "cancer sibling" experience by providing needed support services and helping to draw out the greater and important lessons that may benefit these children later in their own lives. To refer a child or for more information about SuperSibs!, please visit http://www.supersibs.org, or call 866-444-SIBS (7427). SuperSibs! programming has been made possible by a community grant from the Lance Armstrong Foundation, dedicated to enhancing the quality of life for those living with, through and beyond cancer and also by grants from the Mia Hamm Foundation, Margaret Baker Foundation and other generous corporate, foundation and individual donors. Following are 10 simple but rewarding ways that friends and family can support siblings of children with cancer: 1. Introduce them by their OWN name (not as Jimmy's brother or sister). 2. Ask the siblings how THEY'RE doing and then REALLY listen. (Don't always ask them for the medical report on their brother or sister. These kids want a life outside of cancer, too!) 3. Offer to free up the parents so they can spend special time with the sibs alone. Many siblings feel abandoned and devastated because they have little alone time with their mother or father. 4. Send fun mail addressed to the siblings -- individually, by name! 5. Invite the siblings to be a part of fun activities with your family, to help THEM feel special and wanted. 6. Offer to drive the siblings to and from the hospital for a visit with their family, who might not always be able to manage the commute. 7. Remind the siblings that theyre not alone. Many kids in their situation feel angry, jealous, guilty, afraid or forgotten. Encourage the sibling to reach out to someone who will be a good, special support person -- maybe YOU! 8. Express your pride in the siblings own accomplishments. Tell them how special THEY are. 9. Encourage the sibling to write a story or draw a picture that helps them communicate the feelings they are experiencing. Finding outlets for their emotions can be very therapeutic. 10. Refer them to SuperSibs! http://www.supersibs.org 866-444-SIBS (7427) ------ SuperSibs! is a 501(c)(3) nonprofit organization to honor, support and recognize brothers and sisters of children with cancer. |