A diagnosis of childhood cancer impacts the entire family, through multiple doctor visits, frequent hospitalizations, and significant changes in normal routine. This can be a difficult time with considerable psychosocial implications for school-age and adolescent siblings of pediatric cancer patients. Their world is turned upside-down, and their family life is altered. The needs of healthy siblings need to be assessed so that total family care is provided effectively and meaningfully.
Dana-Farber’s Sibling Program provides support to siblings and their families. Through high-level care and ongoing research, our unique program is committed to further exploring the impact of a cancer diagnosis on siblings and creating a better experience for all involved throughout the cancer journey.
The video below, Sibling Voices, was created by and for siblings who have a brother or sister with cancer. It also can help parents/guardians, educators, and others better understand the sibling experience.
Sibling Program Events and Activities
The Sibling Program offers comprehensive, personalized psychosocial support to the school-aged and teenaged siblings of our pediatric patients. We also offer these special opportunities:
- “Bring Your Sibling to Clinic” Week: Each year during the Massachusetts Public School vacation week in April, patients invite their siblings to join them for this special week, which includes craft activities, interactive guest artists, and lunch for the entire family and staff, all hosted by the Sibling Program. Siblings are invited to have their vitals and weight taken with the patient, and to watch port accessing if it is age appropriate and okay with parents. A group activity just for siblings takes place each day, led by a psychosocial clinician and the sibling program staff. This group offers siblings a unique opportunity to meet and share their experience with other siblings.
- “Just for Sibs” Group: All outpatient and inpatient brothers and sisters ages 5 to 12 years are invited to attend this twice-monthly group, led in collaboration with Child Life Specialists from Boston Children’s Hospital. These events not only serve as a forum for siblings to meet and connect with others who are facing similar experiences but also provide an opportunity for healthy siblings to spend quality time with their patient brother or sister before or after Group.
- “Support for Siblings in the Schools” Program: The Sibling Program brings psychosocial specialists to siblings’ schools to facilitate an age-appropriate presentation (either a puppet show or a PowerPoint presentation) with questions and answers related to the specific form of cancer and the sibling’s experience. In an environment where students can maintain a degree of normalcy, but also where academic difficulties, peer relationships, and emotional shifts can be present, the Support for Siblings in the Schools Program is a critical component of sibling care. Also, the program provides tailored information to teachers and guidance counselors about how to support the sibling and what to look for regarding shifts in the sibling’s functioning.
- Teen Sibling Program: Several times a year special group activities for teen siblings are provided.
- Parent Support: During the in-treatment and post-treatment phases of a child’s cancer care, parents have access to educational resources such as books and articles pertaining to issues faced by siblings of differing ages. In addition, the Sibling Specialist provides consultation to parents around sibling issues. This key aspect of the program is important, as many of our families live a good distance away, and siblings may not be able to come in to meet with staff.
- Sibling Bags: School-age and teen-sibling backpacks are available for all siblings ages 5 and up. These unique bags contain age-appropriate books to provide understanding and support, as well as therapeutic activity materials.
- Sibling “BEADS” Program: The Sibling Program collaborated with our pediatric resource room to adapt its popular BEADS program (Beading Each a Different Story), which is designed to help boost the spirits of pediatric cancer patients by providing them with high-quality, custom-made glass and ceramic beads that represent milestones along the cancer journey. Similarly, Sibling BEADS is designed to represent the unique experience of having a brother or sister with cancer. Custom-made beads represent milestones, such as celebrating time with family for occasions like Make A Wish, recognizing sacrifices such as time spent in clinic or at the hospital, and encouraging participation in sibling support programs.
- Sibling Bereavement Support: The Sibling Program has built several programs and materials to help siblings and families cope with the loss of a child. This includes a sibling speaker at the annual Gathering to Remember and A Time for Siblings and Their Parents Who Are Bereaved. These programs bring together bereaved siblings and their parents, giving them separate time with psychosocial providers, and then time together as a family. Appropriate materials such as books and small treasure boxes, along with ongoing school-based care to educate teachers and classmates, can also be provided if requested by parents. We have also produced a DVD — A Time for Siblings and Their Parents Who Are Bereaved — for use in professional education and training.
Parents and siblings, we invite you to watch the video above and to share your feedback through our quick survey:
- Sibling Survey: www.surveymonkey.com/s/SiblingVoices_Sibling
- Parent Survey: www.surveymonkey.com/s/SiblingVoices_Parent