By: Amanda Goetz, M.S., SuperSibs! Communication Program Manager
Although brothers and sisters of children with cancer do not experience the physical diagnosis of cancer, they are indeed profoundly affected by this emotional journey. The sibling struggle has been largely unsupported and unrecognized – grief from the loss of childhood as they knew it, loss of routine, affected friendships, a new definition of “normal,” and the roller coaster feelings of fear, hope, loneliness, anger, abandonment, guilt, jealousy and more.
A recent research study shows that 53% of siblings reported symptoms of Post Traumatic Stress, and 27% qualified for the diagnosis of Post Traumatic Stress Disorder (Alderfer et al). But there is good news. Much of this negative impact can be prevented. Research also indicates that siblings with more social support indicated significantly fewer symptoms of depression, anxiety, and fewer behavior problems than siblings with less social support. This high level of social support plays a protective role in psychological adjustment of siblings of pediatric cancer patients (Barerra).
Since 2002, SuperSibs! has worked to address this glaring need by providing vital support services to thousands of families facing pediatric cancer – to help re-define the “cancer sibling” experience and promote total family healing. Together with parents, teachers, social workers, nurses, child life specialists, religious and spiritual leaders, we can all play a crucial role in helping siblings heal.
Here are suggestions for parents to help siblings through the emotional roller coaster of cancer:
• Make certain that the siblings understand what cancer is, and the ultimate effects it might have…especially the fact that it is not contagious. Talk on an ongoing basis, as your children mature and as your family’s situation changes over time. Siblings who are not informed will often depend on their imagination or hearsay from others rather than the facts. Talking to your other children can help reduce unnecessary stress, guilt and anxiety. As well, these conversations can help build trust and hope as your family faces cancer together. Caring professionals are available to help you have these important conversations with your SuperSibs! children and teens. Just ask your hospital’s pediatric oncology social worker, psychologist, child life specialist or nurse to help you talk about the facts with each of your children
• Although a great deal of parents’ time and energy must be focused on the sick child, siblings must also be helped to know that they are as loved now as they always were and that their value as human beings and as members of the family has neither increased nor decreased because a brother or sister has cancer. One on one, ask your other children how THEY are doing. Then listen. Your SuperSibs! children and teens have hopes, dreams, disappointments and questions as well. They want to feel valued, heard and supported. Parents, teachers and other caring friends can make a tremendous difference to remind siblings how unique and important they are… just for being who they are.
• Avoid relying on older siblings as “another parent.” Over-burdening siblings with the major tasks of running the household can become overwhelming, as teen siblings also juggle school, work and their own emotional reactions to their brother or sister’s treatment. Siblings want to feel needed and supportive, but not overwhelmingly so with full adult responsibilities. Reach out to friends, neighbors and extended family to take on the extra chores such as grocery shopping, meal preparation, laundry, lawn care, carpooling
and other household needs.
• Inform the siblings’ teachers about what is going on at home. Many siblings spend more time with their teachers than with anyone else during the day. Teachers and counselors who are informed about what is happening in the teen or young child’s life as the family battles pediatric cancer can significantly help siblings cope throughout this difficult journey and better manage school work, social relationships and activities.
Most importantly, siblings and all family members are forever changed by pediatric cancer. With ongoing comfort, care, information and coping tools, siblings can not only “survive cancer”… they can face the future with added strength, courage and hope.
SuperSibs! provides services free of charge to honor, support and recognize brothers and sisters of children with cancer. As a national nonprofit organization, SuperSibs! brings comfort and care (via mail, internet and at cancer related events) to these “shadow” siblings in the U.S. and Canada between the ages of 4-18 (including siblings who are bereaved). In addition, SuperSibs! offers college scholarships to High School Senior Siblings of children with cancer. for more information or to make a referral, go to www.supersibs.org or call 866-444-SIBS(7427).