Helping Adolescents Overcome Issues Presented by Cancer

1. Helping Adolescents Overcome Issues Presented by Cancer Presented by CureSearch for Children’s Cancer With generous support from Ronald McDonald House Charities and help from the Child Life Council

2. Helping Adolescents Overcome Issues Presented by Cancer Techniques to enable adolescents to express themselves throughout cancer treatment

3. Helping Adolescents Overcome Issues Presented by Cancer Techniques to enable adolescents to express themselves throughout cancer treatment Video interview of two adolescent cancer survivors Psychosocial issues that adolescents face Coping with diagnosis and treatment School re-entry Life after treatment How to cope as a medical professional

4. Goals Discuss issues that face adolescents and how best to respond to them. How to discuss daily life issues with adolescents How to discuss challenges they may face after treatment ends When to transition an adolescent to adult care. Child Life Specialists in attendance will be given the tools to present these techniques to other members of their hospital staff.

5. Presenters Techniques to enable adolescents to express themselves throughout cancer treatment OJ Sahler, MD: University of Rochester Medical Center, Golisano Children’s Hospital Gabrielle Roberts, PhD: Advocate Children’s Hospital ThuyTrihn, MS, CCLS: Children’s Cancer Hospital at the University of Texas MD Anderson Cancer Center Jason Canner, DO: Advocate Children’s Hospital

7. Psychosocial Issues OJ Sahler Professor of Pediatrics, Psychiatry, Medical Humanities, and Oncology Division of Hematology/ OncologyUniversity of Rochester Medical Center Golisano Children’s Hospital

8. Stages of Adolescence • Early (12-14 yrs.) • Middle (15-16 yrs.) • Late (17-19 yrs.)

9. Early Adolescence (12-14 yrs.) • Puberty: • GirlsMenarche • Growth ends ~ 1 yr. later • BoysEarly sexual characteristics • Growth spurt begins • Relationships: • Boys and Girls • Same sex groups • Early boyfriend/girlfriend • Identity: • Who am I as a physical person? • I want to be like everyone else. • Autonomy: • Limited; parental influence remains important.

10. Middle Adolescence (15-16 yrs.) • Identity: • Who am I as a sexual person? • I don’t want to be different from everyone else. • Autonomy: • Increasing. Driver’s license, afterschool job expand sphere of friendships and activities. • “Mature minor” often time of greatest conflict with parents • Puberty: • Girls • Breast development may be complete • Ovulatory cycles established • Boys • Maximal growth spurt • Muscular development • Relationships: • Boys and Girls • Strong same sex friendship groups being replaced by dating • Sexual experimentation (hetero/homo/bisexual)

11. Late Adolescence (17-19 yrs.) • Identity: • Who am I as a vocational person? • Interests diverge and are channeled • Need to be the same as or not different from everyone else is less intense than earlier. • Autonomy: • Achieves majority at age 18 • Health care decisions should be made with the fully informed consent of the adolescent • Puberty: • Girls • Sexual maturation completed • Boys • Growth may continue into 20’s • Maximal strength in early 20’s • Relationships: • Boys and Girls • Same and mixed-sex groups • Monogamous, serial, or concurrent partners • Sexual experimentation common

12. Supporting Adolescents with CancerCoping with Diagnosis and Treatment Gabrielle Roberts, PhD Licensed Clinical Psychologist Advocate Children’s Hospital

14. “If I had superpowers, I would cure people from all bad diseases like mine. No one should have to go through something so terrible.” - Teen Oncology Patient

15. Five-year cancer survival rates – 1962 vs. present* “The growing sophistication of advanced medical practices (knowledge about which is increasingly accessible to patients and families on the Internet) has meant that people are living longer with knowledge that they may be dying while struggling to deny it all at the same time.” - David Bearison (2006)

16. Teen Cancer: In Context TEEN CANCER VS. • Doctors • Hospitals • Pain • Dependence • Isolation • Hair loss • Medication • Fear • Sick Identity • Friends • School • Fun • Independence • Dating • Carefree • Style • Emerging Identity

17. Coping: Diagnosis ? ?

18. Coping: Diagnosis Diagnosis (Example Illustration)

19. Coping: Diagnosis • Common emotional and behavioral responses in teens: • Confusion • Sadness, anger, numbness • Persistent worry • Difficulty concentrating • Fear of death • Urge to avoid places that are reminders of the illness • Insomnia • Need support from friends • Makes jokes; tries to think positive (American Cancer Society, 2011; The Children’s Hospital of Philadelphia, 2012)

20. Coping: Diagnosis • Common emotional/behavioral responses in parents/caregivers: • Shock • Disbelief/denial • Feeling scared, angry, overwhelmed, sad, worried • Guilt • Not wanting to be away from teen (“over protectiveness”) • Increased concern for teen’s safety • More easily upset (especially with respect to teen) • Decreased frustration tolerance • Difficulty eating • Difficulty sleeping • Worried child will die (American Cancer Society, 2011)

21. Coping Throughout Treatment Dancing seems like a lot of work to do now.” - Teen Oncology Patient

22. Coping Throughout Treatment: How to Cope Avoid? Laugh? Cry? Distract? Approach?

23. Coping Throughout Treatment

24. Coping Throughout Treatment: Emotional Concerns • Mood • Depression • Anger • Anxiety • Loneliness • Fear • Post traumatic stress • Loss • Thoughts of mortality

25. Coping Throughout Treatment: Behavioral Concerns • Behavioral Concerns: • Problems with attention and concentration • Oppositionality/risk taking • Irritability or increased sensitivity • Withdrawal or clinginess • Crying • Problems with treatment adherence • School refusal (American Cancer Society, 2011; The Children’s Hospital of Philadelphia, 2012)

26. Child Life Specialists: The Importance of Social-Emotional Support

27. Child Life Specialists: Helping Teens Cope • Listen • Be observant • Facilitate communication • Be an advocate • Provide space when needed • Be aware of the impact of the family/support system • Be sensitive (and encourage others to be sensitive) to the emotional state of teen/parents when conveying information

28. Child Life Specialists: Helping Teens Cope • Be flexible and open minded • Help to create predictability • Encourage family and teen to maintain normal routines when possible • Encourage social activities to the extent possible • Encourage collaboration amongst support systems

29. Child Life Specialists: Helping Teens Cope • Help teen find opportunities to express feelings • Empower teen to find control/take a role in decision making • Foster the use of positive coping skills and pleasurable activity planning • Make referrals

30. “Life is something that should be very enjoyable for everyone. It should be something not wasted at all.” -Teenage Oncology Patient

31. References American Cancer Society (2011). Children Diagnosed with Cancer: Dealing with Diagnosis. www.cancer.org. Bearison, David J. (2006). Palliative Care at the End of Life. In R.T. Brown (Ed.), Comprehensive Handbook of Childhood Cancer and Sickle Cell Disease: A Biopsychosocial Approach (341-357). New York: Oxford University Press. Breyer, J., Sanfeliz, A., Cleurzo, C.E., & Meyer, E.A. (2006). Loss and Grief. In R.T. Brown (Ed.), Comprehensive Handbook of Childhood Cancer and Sickle Cell Disease: A Biopsychosocial Approach (358-380). New York: Oxford University Press. The Children’s Hospital of Philadelphia (2012). After the Diagnosis: Helping My Family Cope. www.chop.edu Eiser, C. (1985). Changes in understanding of illness as the child grows. Archives of Disease in Childhood, 60, 489-492. Hilden, J.M., Emmanuel, E.J., Fairclough, D.L., Link, M.P., Foley, K.M., Clarridge, B.C., et al. (2001). Attitudes and practices among pediatric oncologists regarding end-of-life care: Results of the 1998 American Society of Clinical Oncology Survey. Journal of Clinical Oncology, 19, 205-212. Himebauch, A., Arnold, R. & May, C. (2011). Grief in Children and Developmental Concepts of Death. End of Life/ Palliative Education Resource Center. Medical College of Wisconsin. www.eperc.mcw.edu. National Cancer Institute (2011). Grief, Bereavement, and Coping With Loss (PDQ). National Cancer Institute at the National Institutes of Health. www.cancer.gov. Theunissen, J.M.J., Hoogerbrugge, P.M., van Achterberg, T., Prins, J.B., Vernooij-Dassen, M.J.F.J., & van den Ende, C.H.M. (2007). Symptoms in the Palliative Phase of Children With Cancer. Pediatric Blood Cancer, 49, 160-165.

32. School Re-Entry and Life After Treatment Thuy Trinh, MS, CCLS Child Life SpecialistChildren’s Cancer Hospital at The University of Texas MD Anderson Cancer Center

34. School Re-Entry Education Laws Individuals with Disabilities Education Act (IDEA) Section 504 of the Rehabilitation Act of 1973 American Disabilities Act (ADA)

35. School Re-Entry • Working with the School • Communication • School Conference/Meeting (teachers, principals, counselors, etc.) • Assess understanding • Clear up misconceptions • Provide information regarding illness • Send a letter (if meeting with the school is not possible) • Communication notebook • Establish a point person for communication • Send updates frequently

36. School Re-Entry • Resources for Teachers • LiveStrong at school • Lessons and activities • http://www.scholastic.com/livestrong/ • Leukemia & Lymphoma Society • Videos and information packages • http://www.lls.org/#/diseaseinformation/managingyourcancer/newlydiagnosed/childhoodcancer/school/trishgreene/

37. School Re-Entry • Working with Peers • School Presentation • Is this something that the family is interested in? • Patient participation? • Issues to address • Diagnosis education, causes of cancer (address that it is not contagious), side effects, changes in appearance, school attendance, and support. • Suggestions for peer support • Sending cards, audio or video recording • Taking a tour or fieldtrip of the hospital • Maintain open communication • Be there • Care package

38. School Re-Entry • Working with Peers (continued) • Patient support for their Peers • Create a “Day in the Life” video of the hospital • Invite them to the hospital • Write a letter to their peers • Maintain open communication

39. School Re-Entry • Working with the Patient and Family • Patient • Coaching • Owning their illness • Identifying patient’s preferred method on communication • Social Media, letters, close friends, etc. • Caregivers • Address concerns and feelings • Overprotect? • Set goals, plans, and create emergency contact list • Empowering the Caregivers to be advocates • Education/Resources

40. School Re-Entry • Team Approach • Multidisciplinary approach • Collaborate with the School liaison, Nurse Practitioners, Social Workers, and other health care members to facilitate positive coping and school re-entry • The school reintegration is a process that should begin at diagnosis and continued on through survivorship.

41. Life After Treatment • The “New Normal” • Vocational Counseling Services • College • Apply for student disability services • Identify educational accommodations and supports to promote academic success

42. Frequently Requested Educational Accommodations Life After Treatment • Allow use of assistive technologies to assist with fine motor difficulties • Individual housing if available to provide reduced distraction environment • Tutoring support • Counseling to assist with organization and study skills • Excused absences for medical appointments and/or treatments • Extended time on assignments and exams • Exams be administered in quiet and distraction free environment • Lectures notes be provided • Instructions and assignments provided in both written and oral presentation • Text books on tape if available • Allowed to tape record lectures

43. Life After Treatment • Career Development • Determine if career adjustment needs to be considered • If needed, explore alternative occupations • Develop career goals • Adjust career goals according to strengths and weaknesses • www.Cancerandcareers.org and http://www.dars.state.tx.us/has more information and resources for cancer survivors entering the workforce.

44. How to Cope as a Medical Professional Jason Canner, DO Pediatric Hematologist/ OncologistAdvocate Children’s Hospital

46. Health Care ProfessionalsDemands • Demands on medical professionals have become increasingly more intense. • Due to: • Expanding complexity of medical care • Patient acuity • Heightened patient/family expectations • Technological advances  increased amount of sophisticated skills • Ongoing need to cope with morbidity/mortality

47. Health Care ProfessionalsDemands: Pediatrics • Working with children • Working with families • Working within a multidisciplinary healthcare team • Working in a pediatric oncology unit • Working within a large hospital/academic health center

48. Health Care ProfessionalsDemands: Adolescents • Adolescents are more aware of their illness • Adolescents understand long-term implications of cancer • Adolescents are not always open to discussing their thoughts or feelings

49. Health Care ProfessionsRewarding • Family centered care • Close, collaborative, ongoing relationship • To be remembered and valued by the family and/or patient • Relationships with parents characterized by cooperation, trust and openness. • Work was highly rewarding and experienced fulfillment and personal growth

50. Health Care ProfessionalsStressors: Cancer • Causing distress/discomfort to patients • Working with children in pain • Treating patients with poor prognosis • Relapse situations • Shift in focus from “intent to cure” to palliation • Differing opinions about medical decision making especially end of life • Providing care for a dying child • Difficulty of balancing home and work life