Cancer’s Effect on Families

1. Cancer’s Effect on Families Melissa A. Alderfer, PhD Nemours Children’s Health System & Stanley Kimmel Medical College at Thomas Jefferson University

2. Goals and Overview • 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

3. Families and Childhood Illness

4. Families & Illness • 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

5. Individual Reactions • 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

6. Depression • 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

7. Anxiety • 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

8. Individual Reactions • 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

9. Posttraumatic Stress • 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

10. Posttraumatic Stress • 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

11. Posttraumatic Stress • 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

12. Family Reactions • 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

13. The Experience of Childhood Cancer

14. Diagnosis • 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

15. Treatment Initiation • 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

16. Diagnosis & Treatment Initiation • Range of expected strong emotions across family members: • Shock, disbelief, denial • Confusion, frustration • Fear, worry, helplessness • Sadness, mourning, grief • Guilt, anger

17. Child with Cancer • 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

18. Parents • 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

19. Siblings • 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

20. Family • 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

21. Illness Stabilization • 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

22. Child with Cancer • 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

23. Parents • 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

24. Parents • 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

25. Siblings • 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

26. Family • 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

27. End of Treatment • 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

28. Adolescent Survivors • 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

29. Young Adult Survivors • Transition to young adulthood may be more difficult • Young Adult survivors may report more PTS symptoms than adolescent survivors or controls

30. Parents • 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

31. Siblings • 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

32. Family • 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”

33. Evolution of the Traumatic Stress Model

34. Summary of Research • 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

35. Qualitative Differences • 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

36. Evolution: Medical Trauma • 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

37. Evolution: Trauma Model • 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

38. Evolution: Trauma Models • 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)

39. Adolescent Survivors • 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

40. Family Members • 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

41. Helping your Family Cope

42. 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. 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. 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. Rely on others… 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

46. 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. 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. 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. Conclusions

50. Summary • 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