1. Hope Lives Here The Children’s Hospital of Philadelphia Cancer’s Effect on Families Melissa A. Alderfer, PhD Nemours Children’s Health System & Stanley Kimmel Medical College at Thomas Jefferson University

2. Hope Lives Here The Children’s Hospital of Philadelphia  Discuss conceptualizations of possible reactions of the family to childhood cancer  Review the course of childhood cancer and the experience  Talk about evolution in our understanding  Provide recommendations to foster adjustment Goals and Overview

3. Hope Lives Here The Children’s Hospital of Philadelphia Families and Childhood Illness

4. Hope Lives Here The Children’s Hospital of Philadelphia  The family provides the context in which childhood illness is managed  The functioning of the family influences two outcomes:  management of the illness  wellbeing of its members  The family is greatly impacted by illness:  individual  relationships  functioning as a unit Families & Illness

5. Hope Lives Here The Children’s Hospital of Philadelphia  Depression – sad, empty or irritable mood with physical and cognitive changes reducing ability to function  Anxiety – excessive and persistent fear or worry about a variety of events and situations Individual Reactions

6. Hope Lives Here The Children’s Hospital of Philadelphia Depression symptoms:  depressed mood  diminished interest or pleasure in activities  significant weight loss or gain  inability to sleep or inability to stay awake  restlessness or slowing of movements  fatigue, loss of energy  feelings of worthlessness, excessive guilt  diminished ability to think or concentrate  recurrent thoughts of death or suicide Depression

7. Hope Lives Here The Children’s Hospital of Philadelphia Anxiety symptoms:  excessive fear and worry manifest by:  feeling wound-up, tense or restless  being easily fatigued or worn-out  having concentration problems  irritability  significant tension in muscles  difficulty with sleep  difficulty controlling the fear and worry Anxiety

8. Hope Lives Here The Children’s Hospital of Philadelphia  Posttraumatic Stress – intrusive thoughts, avoidance, negative alterations in cognitions/mood and physiological arousal in response to exposure to actual or threatened death, serious injury or violence Individual Reactions

9. Hope Lives Here The Children’s Hospital of Philadelphia  Intrusion, re-experiencing symptoms:  recurrent, involuntary, intrusive memories  recurrent distressing dreams  acting or feeling as if the event is recurring  intense distress in response to reminders of the event  physiological reactivity to reminders  Persistent avoidance  efforts to avoid thoughts, feelings, memories  efforts to avoid reminders of the event Posttraumatic Stress

10. Hope Lives Here The Children’s Hospital of Philadelphia  Negative alterations in cognitions and mood:  exaggerated negative beliefs or expectations  persistent, distorted cognitions leading to personal blame or blaming others  negative emotions (e.g., fear, horror, anger, guilt)  inability to experience positive emotions  inability to recall an important aspect  diminished interest or participation in activities  feeling detachment or estrangement Posttraumatic Stress

11. Hope Lives Here The Children’s Hospital of Philadelphia  Increased arousal and reactivity:  difficulty falling or staying asleep  irritability or outbursts of anger  reckless or self-destructive behavior  difficulty concentrating  hypervigilance  exaggerated startle response Posttraumatic Stress

12. Hope Lives Here The Children’s Hospital of Philadelphia  Structural changes:  New roles, responsibilities and schedules  New rules and patterns of interaction  Changes to the affective environment:  Changes in closeness or cohesion among members  Changes in the emotional tone  Changes in emotional availability and responsiveness Family Reactions

13. Hope Lives Here The Children’s Hospital of Philadelphia The Experience of Childhood Cancer

14. Hope Lives Here The Children’s Hospital of Philadelphia  Complicated and unsettling process  Parents are typically the first to notice that something is wrong, but may not expect cancer  Once cancer is suspected, the family may be referred to a large unfamiliar children’s hospital  The child may need extensive, invasive diagnostic tests Diagnosis

15. Hope Lives Here The Children’s Hospital of Philadelphia  Beginning treatment:  Invasive, painful, and makes the child sick  Complex regimens, frequent or extended hospitalizations  Side effects, complications  Treatment becomes the center of family life Treatment Initiation

16. Hope Lives Here The Children’s Hospital of Philadelphia Range of expected strong emotions across family members:  Shock, disbelief, denial  Confusion, frustration  Fear, worry, helplessness  Sadness, mourning, grief  Guilt, anger Diagnosis & Treatment Initiation

17. Hope Lives Here The Children’s Hospital of Philadelphia  The reactions of the child with cancer to diagnosis vary depending upon his or her age  Some symptoms of anxiety, fear, and sadness are common  Near diagnosis,10% fall into clinical range for PTS  Overall, children with cancer cope well Child with Cancer

18. Hope Lives Here The Children’s Hospital of Philadelphia  Within 2 weeks of diagnosis, 85% of parents report significant distress  Anxiety, poorer quality of life, and symptoms of depression are common  Within 1 month of diagnosis, 51% of mothers and 40% of fathers qualify for a diagnosis of Acute Stress Disorder  75-83% report intrusion; 70-83% report avoidance; 83% report arousal Parents

19. Hope Lives Here The Children’s Hospital of Philadelphia  Siblings report loneliness, marginalization, jealousy and worry  Within 1 month of diagnosis, 57% of siblings report poor emotional quality of life  Nearly 40% of siblings report difficulties with memory, concentration and learning near diagnosis Siblings

20. Hope Lives Here The Children’s Hospital of Philadelphia  Marital distress is reported within 40% of families  Parenting stress is common: over- protection, impatience, relaxed rules and inconsistency in discipline is reported by 32% of fathers and 48% of mothers  Families report pulling closer together: 60% of families report increased cohesion Family

21. Hope Lives Here The Children’s Hospital of Philadelphia  Remission and illness stabilization occurs for most children  Treatment becomes more predictable, but with times of transition and uncertainty  Side effects, complications and possibility of recurrence/relapse remain stressful Illness Stabilization

22. Hope Lives Here The Children’s Hospital of Philadelphia  During treatment children with cancer continue to show little or no evidence of emotional or behavioral problems  Some reports suggest LOWER levels of depression and anxiety than healthy children Child with Cancer

23. Hope Lives Here The Children’s Hospital of Philadelphia  Two-thirds of parents report that dealing with their own intense emotions is the greatest challenge  Feelings of helplessness, powerlessness, and lack of control are common  Anxiety and depression symptoms decrease within the first three months after diagnosis, but remain significantly elevated Parents

24. Hope Lives Here The Children’s Hospital of Philadelphia  Within a few months of diagnosis, 44% of parents qualify for a diagnosis of PTSD  At 6 months post-diagnosis, 40-50% of parents continue to report increased distress  About one year out, 68% of Moms and 57% of Dads scored in the moderate to severe range for PTS  By 24 months post-diagnosis, distress levels are near normative levels for most Parents

25. Hope Lives Here The Children’s Hospital of Philadelphia  Separation from parents and poor communication fuels confusion and anxiety  Increases in behavioral and emotional problems, decrements in quality of life, declines in school performance  25% qualify for a diagnosis of PTSD; Up to 60% in moderate to severe range for PTS Siblings

26. Hope Lives Here The Children’s Hospital of Philadelphia  Significant marital distress is reported by 25 to 30% of parents in the year post- diagnosis  Parenting stress increases once the child reaches remission  Overprotection and conflicts between parents and children are typical  Role overload is common Family

27. Hope Lives Here The Children’s Hospital of Philadelphia  May be months or years after diagnosis  Loss of the support of the medical team; end of actively fighting cancer  Expectation to return to normal  Emotionally ambivalent time: relief and joy accompanied by fear and uncertainty End of Treatment

28. Hope Lives Here The Children’s Hospital of Philadelphia  For most survivors, no evidence of depression or anxiety  8% report lifetime PTSD; 5% current PTSD; 13-18% in clinical range for PTS  Reports of a more positive view of life, good self-esteem, broader perspective Adolescent Survivors

29. Hope Lives Here The Children’s Hospital of Philadelphia  Transition to young adulthood may be more difficult  Young Adult survivors may report more PTS symptoms than adolescent survivors or controls Young Adult Survivors

30. Hope Lives Here The Children’s Hospital of Philadelphia  Distress and anxiety spike at end of treatment, then improve  PTS off treatment:  14 to 20% of mothers with current PTSD; 44% in moderate to severe range for PTS  10% of fathers with current PTSD; 33-35% in moderate to severe range for PTS Parents

31. Hope Lives Here The Children’s Hospital of Philadelphia  No evidence of increased anxiety and depression long-term for siblings, but very little research  About one-third report moderate to severe PTS, significantly greater than controls Siblings

32. Hope Lives Here The Children’s Hospital of Philadelphia  Family patterns forged during treatment may persist  Family members may adjust at different speeds and in different ways  Disappointment may arise if there are expectations that things will return to “normal” Family

33. Hope Lives Here The Children’s Hospital of Philadelphia Evolution of the Traumatic Stress Model

34. Hope Lives Here The Children’s Hospital of Philadelphia  Little evidence of anxiety, depression and PTS symptoms in children with cancer  PTS rates similar to natural disasters  no different from general population  Strong evidence of distress, PTS in parents  PTS rates similar to experiencing violent crime  biological evidence is starting to accrue  Growing evidence of distress, PTS in siblings Summary of Research

35. Hope Lives Here The Children’s Hospital of Philadelphia  Rarely Anxiety, Depressive Disorders  Sometimes cancer-related PTSD, but  some classic symptoms are rarely reported in families of children with cancer  some PTSD symptoms are qualitatively different; some are constrained by the situation  Symptoms may occur without impairment in functioning Qualitative Differences

36. Hope Lives Here The Children’s Hospital of Philadelphia Pediatric Medical Traumatic Stress:  a set of psychological and physiological responses of children and their families to pain, injury, serious illness, medical procedures and invasive or frightening treatment experiences  response are more strongly related to subjective experience of the event as opposed to objective severity  responses include symptoms of re-experiencing, avoidance, arousal and changes in mood that may be adaptive or may become disruptive to functioning; most are resilient Evolution: Medical Trauma

37. Hope Lives Here The Children’s Hospital of Philadelphia Trauma symptoms as normative and adaptive  distress communicates a need for support  re-experiencing allows cognitive processing of the event  avoidance may reduce distress and allow functioning  arousal keeps you primed to recognize and deal with additional traumatic events Evolution: Trauma Model

38. Hope Lives Here The Children’s Hospital of Philadelphia Potential positive outcomes: resilience, growth  resilience: “the ability to maintain relatively stable, healthy levels of psychological and physical functioning, as well as the capacity for generative experiences and positive emotions (when exposed to a potentially traumatic event)” (Bonanno & Mancini, 2008)  PTG: “the cognitive process by which those who have experienced trauma apply positive interpretations and find meaning in the event” (Barakat, Alderfer & Kazak, 2006) Evolution: Trauma Models

39. Hope Lives Here The Children’s Hospital of Philadelphia  More positive view of life; good self-esteem; broader perspective  Enhanced maturity; greater compassion and empathy; new values and priorities; new strengths; deeper appreciation of life  53% indicated a positive change in the way they think about their life; 42% indicated a positive change in their plans for the future Adolescent Survivors

40. Hope Lives Here The Children’s Hospital of Philadelphia  Parents :  86% of mothers and 62% of fathers indicated a positive change in the way they think about their life  58% of mothers and 48% of fathers indicated a positive change in how they treat others  Siblings:  enhanced maturity, responsibility, independence and personal growth  more empathy, thoughtfulness and compassion Family Members

41. Hope Lives Here The Children’s Hospital of Philadelphia Helping your Family Cope

42. Hope Lives Here The Children’s Hospital of Philadelphia Be patient… with yourself, your family, and treatment. It takes time:  to learn about cancer, treatment and the medical system  to adjust emotionally  to understand the reactions of family members  to find the best way for your family to work together and support each other  to accept the uncertainty With time it gets better

43. Hope Lives Here The Children’s Hospital of Philadelphia Help your children… understand what is happening. Talk to them;  be age-appropriate (young children don’t need detail; explain physical changes, treatment course, changes in routine)  be reassuring and supportive (this is not punishment; it is not contagious; you will not be abandoned; your needs will be met)  be sensitive to their preferences and style (not your own)  be honest (help them prepare; build trust)  be open to their questions (you don’t have to have all the answers)

44. Hope Lives Here The Children’s Hospital of Philadelphia Share your feelings… with family and friends. It is important to:  recognize how your thoughts and feelings impact your behavior with others  talk about how you feel  share your feelings with, encourage your children to express their feelings  understand positive emotions are OK  accept the feelings of others Emotional connections help

45. Hope Lives Here The Children’s Hospital of Philadelphia to help you and your family. Ask or allow  the medical team to help educate and prepare you and your children for what is to come  extended family to help maintain your home, spend time with healthy siblings, become involved in medical care  friends, neighbors, community members to provide support to your family  the school to help your children Don’t try to go it alone Rely on others…

46. Hope Lives Here The Children’s Hospital of Philadelphia Establish routines… and maintain rules. Consistency helps:  offset the unpredictability of cancer  allow children to feel more safe and secure  ward off behavioral problems in the future  give everyone something to expect Create your “new normal”

47. Hope Lives Here The Children’s Hospital of Philadelphia Take care… of yourself. To be at your best:  take time for yourself  do enjoyable things with family and friends  maintain your own physical health  accept what you can’t control; focus on what you can control  look for realistically positive aspects of your experience Replenish yourself

48. Hope Lives Here The Children’s Hospital of Philadelphia Ask for help… from a psychosocial provider when:  emotional reactions are interfering with cancer treatment or appropriate follow-up care  someone has problems with day to day functioning that aren’t improving with time  differences in coping style are causing relationship problems  you have concerns and need advice Get help when needed

49. Hope Lives Here The Children’s Hospital of Philadelphia Conclusions

50. Hope Lives Here The Children’s Hospital of Philadelphia  Distress is greatest at diagnosis and improves over time reaching near normal levels by 2 years post-diagnosis  Parents report the most distress within the family, followed by siblings  The child with cancer seems to function quite well throughout the cancer experience  Evidence of symptoms of traumatic stress and traumatic growth across family members Summary

51. Hope Lives Here The Children’s Hospital of Philadelphia  Diagnostic criteria should not constrain our conceptualization of the cancer experience  Must refrain from placing value judgments on individual differences in response to childhood cancer  Continue to listen to the stories/experiences of families to expand our understanding Conclusions

52. Hope Lives Here The Children’s Hospital of Philadelphia Conclusions To maximize adjustment: - be patient, it takes time - talk with your children - share your feelings - rely on others - create your “new normal” - take care of yourself - ask for help when needed

53. Hope Lives Here The Children’s Hospital of Philadelphia Thank you for your attention! Melissa A. Alderfer, PhD Nemours Children’s Health System & Stanley Kimmel Medical College at Thomas Jefferson University