SuperSibs! Frequently Asked Questions
- What is SuperSibs!
- Who does SuperSibs! serve?
- How, when and why did SuperSibs! begin?
- How does pediatric cancer affect siblings?
- What kind of support does SuperSibs! provide?
- How does SuperSibs! help the siblings?
- How can kids get into the SuperSibs! program? Who can refer?
- What information do you need for a referral?
- What happens once kids get referred to SuperSibs!
- How do I know what’s taken place with the kids once I’ve referred them to the program?
- Must the kids have a sibling who is currently on active treatment?
- Do you provide services for the child with cancer, too?
- Do you provide services to children whose parents have cancer?
- How long do kids stay in the SuperSibs! program?
- How can I help?
- What happens if the sibling dies?
- How can I help?
- How to reach SuperSibs!
What is SuperSibs!
SuperSibs! is a national not-for-profit organization that serves to honor, support, and recognize the brothers and sisters of children with cancer.
Who does SuperSibs! serve?
SuperSibs! provides free, ongoing services to children between the ages of 4 and 18, who reside in the United States or Canada, and who have (or have had) a brother or sister with cancer.
How, when and why did SuperSibs! begin?
SuperSibs! began in Illinois, from the vision of a mother of a cancer survivor and a super sibling. SuperSibs! founder saw firsthand, the profound impact that pediatric cancer had on both of her children and recognized the need for specific sibling support. Our goal is to help siblings redefine the “cancer experience” so they can face the future with strength, courage and hope. SuperSibs! began providing services to children in Illinois and Wisconsin on April 10, 2003 and in January 2004, expanded our services nationwide. We now support siblings of children with cancer referred to us from anywhere in the US and Canada.
How does pediatric cancer affect siblings?
The brothers and sisters of children with cancer are truly the “shadow survivors.” Though they do not physically experience cancer, they are impacted in ways that change their lives drastically. Their struggle has been largely unrecognized and unsupported – grief from the loss of childhood as they knew it, loss of routine, affected friendships, a new definition of “normal”, and the emotional roller coaster of fear, hope, loneliness, anger, abandonment, post-traumatic stress, jealousy, guilt, depression, and more.
- Siblings of children with cancer are particularly vulnerable to depression, anger, anxiety, feelings of guilt, and social isolation.(Spinetta, 1981)
- Siblings have been identified as the most emotionally neglected and unhappy of all family members during serious childhood illnesses.(Chesler, 1987)
- Younger siblings were reported by parents to have more externalizing behavior problems (aggression, regression, school performance).(Ferrari, 1984)
- Older siblings are at increased risk for internalizing disorders (depression, anxiety, obsessive compulsive symptoms).(Stawski, 1996)
- One study showed that nearly one third of the siblings of bone marrow transplant patients showed anxiety, social withdrawal, externalizing symptoms, and moderate levels of post-traumatic stress disorder. (Packman, 1997)
- Siblings are at risk for poor academic achievement, impaired social interactions, guilt, aggressiveness, withdrawal, anxiety, tearfulness, jealousy, anxiety.(Sahler, 1994 and 1997)
- There is increased sibling rivalry, anger, frustration, feelings of rejection, guilt, loneliness, sadness, confusion, and anxiety.(Kramer, 1981)
- Researchers noted emotional stress, sense of emotional deprivation, decrease in parental tolerance, anger, and guilt.(Murray, 1999)
- Nearly half (49%) of siblings reported mild post traumatic stress and 32% indicated moderate to severe levels. One fourth thought their sibling would die during treatment. Over half found cancer experience scary and difficult.(Alderfer, 2003)
- Good care for siblings includes making siblings feel useful and participative, providing useful, manageable information, and giving opportunities to share thoughts and feelings. Assistance includes emotional support, fair attention and family life. (Von Essen and Enskar, 2003)
- Siblings with more social support indicated significantly fewer symptoms of depression, anxiety, and fewer behavior problems than siblings with less social support. High level of social support plays a protective role in psychological adjustment of siblings of pediatric cancer patients. (Barrera, 2004)
What kind of support does SuperSibs! provide?
SuperSibs! offers two main categories of age-appropriate “meaningful mail” sent 10 times per year to the siblings – to “meet them where they are”:
Surprise and Delight Services – wonderful upbeat mailings sent to siblings via the mail. These fun packages are to bring smiles, hope, support and recognition to these brothers and sisters of pediatric cancer patients. Examples of these mailings have been SuperSibs! T-shirts, personalized Courage Trophies, CD Cases, Computer Games, “Sweet Dreams” Pillowcases, Smilecards and more!
Advocacy and Support Services – ongoing support, education and comfort components of our program. These mailings include tools that will help the siblings manage through and beyond this difficult life challenge. Materials include custom-designed Journals, SibBuzz Teen and SibBuzz Jr. Newsletters, Books, Guided Imagery Audio CD’s and more. Also, our moderated Teen Chat Room now helps teens connect and communicate in a safe and secure setting.
SuperSibs! Scholarship program – Each year, SuperSibs! awards a pre-determined number of $5,000 scholarships to High School Senior siblings. Criteria are available in the fall of each year at www.supersibs.org and scholarships are awarded in May. Applicants must be a sibling of a child who has (or has had) cancer (even if the patient is no longer living) must live in the United States, be a graduating high school senior and must be attending an accredited educational institution in the fall. Application and deadline information is available on the SuperSibs! website.
SuperSibs! information for parents and professionals – In addition to providing direct services of support for the children, we work hard to raise awareness of the need for integrated sibling support across many venues. SuperSibs! presents educational sessions for parents, hospital and school professionals, and cancer-related organizations so that together, we can better meet the needs of these “shadow survivors”. Also, when possible, SuperSibs! provides support services or information for local hospital picnics, parties and cancer-related walks, to show special support for the siblings!
How does SuperSibs! help the siblings?
Being part of a group always helps one feel like they belong somewhere – and offers a sense of identity and validation. Because brothers and sisters of children with cancer are often excluded from hospital visits, meetings with doctors, procedures and support programs, they often feel invisible, isolated, confused and abandoned. SuperSibs! was established to be THEIR organization – specifically for kids like themselves. These are a growing number of children who have something in common – a sibling battling cancer. Our FREE services are ongoing, directly via the mail with THEIR names on it – and validates that siblings are important… important enough for a whole organization to be created and dedicated to them!
Our annual survey feedback, as well as the mail we receive EVERY DAY, reinforces that our program DOES make a difference for these kids and their families.
How can kids get into the SuperSibs! program? Who can refer?
Anyone can make a referral to SuperSibs! A parent, social worker, child life specialist, teacher, therapist, friend, relative or even the sibling him/herself can make a referral. Just call 847-705-SIBS (7427) in Illinois, or toll free at 866-444-SIBS (7427) or see our website at www.supersibs.org.
What information do you need for a referral?
We collect basic demographic information. Family contact information (parents’ names, address, phone), patient name and birthdates, diagnosis and diagnosis date, hospital and doctor, siblings names and birthdates. All information is confidential and is never shared for any reason.
What happens once kids get referred to SuperSibs!
Once a child is referred to SuperSibs! the family will receive a Welcome Kit. The parent Welcome Kit includes a letter from the Executive Director and a Parent Guide on how to support siblings. The kids’ Welcome Kit has each sibling’s name hand-printed on their envelope and includes a letter from SuperSib and US Women’s Soccer Champion Mia Hamm, a SuperSibs! VIP card, a Feelings magnet, SuperSibs! wristband, tips about how to be a Super SuperSib! and a special sib-ribbon. Subsequent mailings are addressed directly to the SuperSibs! child (see service descriptions, above). Items are always changing and are age appropriate.
How do I know what’s taken place with the kids once I’ve referred them to the program?
Periodically throughout the year, SuperSibs! will send an email update to our referrer database (hospital social workers and child life specialists) of that period’s programs so they can be aware of what the siblings have received. Then they can reinforce and recognize these siblings by asking about the program and how they are doing on an ongoing basis!
Must the kids have a sibling who is currently on active treatment?
While most kids who are referred to SuperSibs! have a sibling who is actively under treatment, there are many children who learned about our program after their sibling has either completed treatment or did not survive treatment. ANY CHILD WHO HAS HAD A SIBLING WITH CANCER AND FEELS THAT SUPERSIBS! WOULD HELP THEM IS ELIGIBLE FOR OUR PROGRAM AS LONG AS THEY’RE BETWEEN THE AGES OF 4 and 18!
Do you provide services for the child with cancer, too?
As there are already many organizations which provide support, information, wishes and events for the child with cancer, and because there is no other organization providing specific ongoing support for the brothers and sisters of these patients, we focus our resources specifically on serving the siblings. We encourage families to take advantage of these existing excellent support opportunities for their child with cancer.
Do you provide services to children whose parents have cancer?
No. Since there is such a huge need -- over 18,000 new siblings each year become eligible for our program -- we must limit our services to the brothers and sisters of children with cancer so we can best serve each child. Please contact your local hospital Social Worker, Child Life Specialist or School Counselor to find resources in your area to serve children whose parents have cancer.
How long do kids stay in the SuperSibs! program?
“Once a SuperSib – always a SuperSib!” Once a child is in SuperSibs! they remain in our program until they turn 19, or sooner if they request to discontinue participation. At the end of each calendar year, we send evaluation forms to parents and the siblings, requesting their feedback. At this time we also ask families to let us know if they no longer wish their children to be a part of the program.
How can I help?
Thanks so much for asking! Because the demand for our services continues to swell each year, we rely more and more on outside support! Please contact us by phone or online at www.supersibs.org to make a donation, to explore volunteer opportunities, or of course, to refer a child to our program. We could never have come this far alone – thank you SO much for your support and generosity. Together, we can bring light and hope to these special children – the siblings of children with cancer.
What happens if the sibling dies?
When we learn about the death of a patient (and we request that you please let us know of any changes in family status), we send a Bereavement Package that includes a Cuddle Cloud (a soft cloud that inspires Hope), an age-appropriate journal, and a special note of comfort. These children DO continue to be a part of SuperSibs! even if their sibling dies.
How can I help?
You can help SuperSibs! by remembering to refer all of your pediatric cancer families to our program. Don’t just refer those who are expressing serious issues – remember that the kids who become the “perfect” child are suffering in their own ways too! EVERY BROTHER OR SISTER OF A CHILD WITH CANCER DESERVES SUPPORT FROM THIS SPECIAL GROUP!!!
Other ways to help:
You can help SuperSibs! by creating and leading sibling support programs or special sibling celebrations at your hospital or organization. Speak with families and colleagues about the need for attention to sibling issues. Also, you can help by raising money, making SmileCards, and volunteering. For more information on how to get involved in these ways, please call us!
How to reach SuperSibs!:
Sandi Ring, M.S., CCLS
National Outreach Director
SuperSibs!
5005 Newport Drive
Rolling Meadows, IL 60008
(847) 705-SIBS (7427) – phone
(866) 444-SIBS (7427) – toll free
(847) 776-7084 – fax
(224) 715-5935 – direct number
sring@supersibs.org – email
www.supersibs.org – website
Thanks so much for your interest and support of SuperSibs!
When a child is diagnosed with cancer, everyone in the family needs healing including “the shadow survivors” — the siblings.