1. Special and Important Brothers and Sisters Hanna Malak Katie Mahon

2. Introductions Hanna Malak Katie Mahon

3. Overview Why do siblings needs programs? Okizu as an example of a siblings program. Obstacles you might face when setting up a siblings program. Ideas to help you overcome these obstacles. Other resources for siblings.

4. Why Do Siblings Need Programs? Challenges that siblings face: –Changes in routines –Changes in family relationships and dynamics –Their needs are not met by treatment centers, the community, their parents, etc.

5. Why Do Siblings Need Programs? Challenges that siblings face: –Intense and overwhelming feelings. Fear and anxiety Anger Jealousy and resentment Loneliness and isolation Guilt Sadness and grief

6. Why Do Siblings Need Programs? Challenges and changes can result in: –Increased separation anxiety –Withdrawing from family –Regressing or acting younger –Increased physical symptoms –Trouble sleeping and nightmares –Changes in mood –Misbehaving or acting out –Demanding or entitled behaviors –Performing worse academically –Suppression of own feelings

7. Why Do Siblings Need Programs? Challenges and changes can result in: –Post-Traumatic Stress symptoms and PTSD

8. Why Do Siblings Need Programs? Benefits of siblings programs: –Peer support –Decreased feelings of isolation –Positive impact on mood and emotional well- being –Increased self-esteem –Greater independence

9. Why Do Siblings Need Programs? Benefits of siblings programs: –Respite and escape from daily life –Fun! –Positive relationships with and attention from medical staff –Positive relationships with and attention from other adults

10. Why Do Siblings Need Programs? “My experience at camp was amazing. Camp Okizu allowed me to talk about things I’ve never been able to say before because no one has ever thought my sister having cancer when I was little affected me.” —14 year-old female SIBS camper

11. Why Do Siblings Need Programs? “Okizu makes such a difference in my life. I feel like Okizu helped me fly as a person rather than drown, which I probably would have done in rough times if SIBS Camp hadn’t existed. No exaggeration.” —17 year-old female SIBS camper

12. Why Do Siblings Need Programs? “It gives them the opportunity to know they aren’t alone and are so special. So often the sibs sacrifice for the good of their sibling and the camp lets them cut free and focus on just being happy again.” —Parent of a 10 year-old female SIBS camper

13. Why Do Siblings Need Programs? “Okizu is amazing! The difference you make in so many kids lives speaks for itself. You brought spirit back into her – a piece she lost over this past year as she was left home much of the time during her brother’s treatments. Thank you for bringing back her smile!” —Parent of a 14-year-old female SIBS camper

14. Why Do Siblings Need Programs? “It’s been over five years since Aidan lost his sister Teagan to cancer. It wasn’t until last summer after his return from Okizu that he shared with us some of his grief… After five years, he finally felt comfortable to let us in on what he has been through. It was a beautiful moment and I have Okizu to thank for giving this kid a place to acknowledge his feelings and explore his grief. Thank you to all of you.” —Parent of a 14 year-old male SIBS camper

15. Why Do Siblings Need Programs? “I’m thankful for Okizu allowing siblings the opportunity to be the center of attention. They so deserve it but, after a year like we’ve had and so many other families have had, many times they are put in second place. Being in first place is a true blessing. Thank you!” —Parent of a 12-year- old male SIBS camper

16. About Okizu Started in 1982 with 28 Oncology Campers Added Family Camp in 1984 Held our first siblings program in 1985 In 1994, we added four TNT weekends In 2008, we added two weekend-long programs for bereaved teens and young adults

17. About Okizu Okizu’s mission is to provide peer support, respite, mentoring, and recreation programs to meet the needs of all members of families affected by childhood cancer.

18. About Okizu –Our 2014 schedule included: Eight Family Camp weekends Three one-week Oncology Camp sessions Four one-week SIBS Camp sessions Four TNT weekends Two weekends for bereaved teens and young adults

19. Obstacles You Might Run Into Mission definition Limited Resources: –Time –Space –Location and Transportation –Funding –Staff and Volunteers Behavior issues

20. Ideas to Help Overcome Obstacles Expanding your organization’s mission Smaller programs: –Siblings Retreat/Siblings Day Programs –Siblings Potluck –Saturday Night Out (SNO) Raising awareness about siblings’ needs Providing other resources for families

21. Other Resources SuperSibs: –Comfort & Care Program –Sib Spot –Sibling Ambassador Program –www.alexslemonade.org/campaign/supersibs Starbright World: –www.starbrightworld.org Hospital-based siblings programs

22. Questions?

23. References American Society of Clinical Oncology (2012, July). Siblings and Cancer. Retrieved from http://www.cancer.net/coping- and-emotions/communicating-loved-ones/siblings-and-cancer Hagedoorn, M., Kreicbergs, U., & Appel, C. (2011). Coping with cancer: the perspective of patients’ relatives. Acta Oncologica, 50, 205-211. Houtzager, B.A., Grootenhuis, M.A., Caron, H.N., & Last, B.F. (2004). Quality of life and psychological adaptation in siblings of paediatric cancer patients, 2 years after diagnosis. Psycho-Oncology, 13, 499-511. Houtager, B.A., Grootenhuis, M.A., & Last, B.F. (2001). Supportive groups for siblings of pediatric oncology patients: Impact on anxiety. Psycho-Oncology, 10, 315-324. Kaplan, L.M., Kaal, K.J., Bradley, L., & Alderfer, M.A. (2013). Cancer-related traumatic stress reactions in siblings of children with cancer. Families, Systems, & Health, 31(2), 205-217. O’Shea, E.R., Shea, J., Robert, T. & Cavanaugh, C. (2012). The needs of siblings of children with cancer: a nursing perspective. Journal of Pediatric Oncology Nursing, 29(4), 221-231. Packman, W., Fine, J., Chesterman, B., vanZutphen, K., Golan, R., Amylon, M.D. (2004). Camp Okizu: preliminary investigation of a psychologial intervention for siblings of pediatric cancer patients. Children’s Health Care, 33(3), 201- 215. Wu, Y.P., Roberts, M.C., Parikshak, S., & Amylon, M.D. (2011). Assessing experienced of children who attended a camp for children with cancer and their siblings: a preliminary study. Child Youth Care Forum, 40, 121-133.

24. Thank You Feel free to contact us with any questions: Hanna Malak hannajmalak@yahoo.com Katie Mahon katie@okizu.org 415-382-9083