Coping with Cancer
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Coping with Cancer

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Alex's Lemonade Stand Foundation holds an annual Childhood Cancer Symposium in Philadelphia. It is designed to be an educational resource, providing families with the opportunity to learn about issues ...

Alex's Lemonade Stand Foundation holds an annual Childhood Cancer Symposium in Philadelphia. It is designed to be an educational resource, providing families with the opportunity to learn about issues and topics of treatment and beyond, while meeting other families in a group setting. Registration is free and is open to all those touched by childhood cancer, including patients and their siblings.

Presentation by: Melissa Alderfer, PhD.

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Coping with Cancer Coping with Cancer Presentation Transcript

  • at The Children’s Hospital of Philadelphia The Cancer CenterCoping with Cancer:A family journey Melissa A. Alderfer, PhD The Children’s Hospital of Philadelphia & The University of Pennsylvania School of Medicine
  • Overview at The Children’s Hospital of Philadelphia Discuss a traumatic stress model that we The Cancer Centerfind helpful in understanding coping withchildhood cancer Summarize what we know about thepsychosocial impact of childhood cancer onfamilies Provide suggestions for maximizingadjustment to cancer
  • Cancer Traumatic of Childhood Stress Model The Cancer Centerat The Children’s Hospital of Philadelphia
  • Traumatic Stress Model Traumatic Stress Models have been discussed at The Children’s Hospital of Philadelphiadating back to the nineteenth century The Cancer Center - Railway Spine: nightmares, avoidance, chronic pain - Hysteria: agitation, dissociation - Soldier’s Heart: cardiovascular activation, fatigue - Shell Shock: memory loss, emotional outbursts, numbing Conceptualization of the phenomenon developedthrough the years In 1980, Posttraumatic Stress Disorder wasdefined by the American Psychiatric Association
  • Traumatic Stress Model A “normal” reaction to catastrophic event at The Children’s Hospital of Philadelphia The Cancer Center Traumatic event: - involves actual or threatened death or serious injury or a threat to the physical integrity of self or others - produces intense fear, horror, or helplessness Symptoms include intrusive memories, avoidance,and physiological arousal “Diagnosis of a life threatening illness” and“learning that one’s child has a life-threatening illness”specifically listed as potentially traumatic events
  • Traumatic Stress Re-experiencing of the event at The Children’s Hospital of Philadelphia The Cancer Center - Recurrent, intrusive, distressing recollections - Recurrent distressing dreams - Acting or feeling as if the event is recurring - Intense psychological distress at exposure to internal or external cues that symbolize or resemble the event - Physiological reactivity to such cues
  • Traumatic Stress Avoidance and numbing at The Children’s Hospital of Philadelphia The Cancer Center - Efforts to avoid thoughts, feelings, conversations - Efforts to avoid activities, places or people - Inability to recall an important aspect - Diminished interest or participation in significant activities - Feelings of detachment or estrangement - Restricted range of affect - Sense of foreshortened future
  • Traumatic Stress Increased arousal at The Children’s Hospital of Philadelphia The Cancer Center - Difficulty falling or staying asleep - Irritability or outbursts of anger - Difficulty concentrating - Hypervigilance - Exaggerated startle response To qualify for a diagnosis of PTSD - 1 re-experiencing, 3 avoidance, 2 arousal symptoms - Symptoms for at least 1 month - Significant distress or impairment in functioning
  • Traumatic Stress Model Continues to evolve, draw on coping literature at The Children’s Hospital of Philadelphia The Cancer Center Trauma symptoms may be 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
  • Traumatic Stress Model Premise: Traumatic events challenge the patterns at The Children’s Hospital of Philadelphiaof thoughts and behaviors that allow people to The Cancer Centerfunction on a daily basis “Psychologically seismic events that can severelyshaken, threaten or reduce to rubble many of theschematic structures that have guided understanding,decision making, and meaning in the world” Can lead to distress or provide the opportunity forgenerative experiences, positive growth, enhancedadjustment
  • Families Impact of Cancer on Psychosocial The Cancer Centerat The Children’s Hospital of Philadelphia
  • Patterns of Response Different patterns of response are possible: at The Children’s Hospital of Philadelphia The Cancer Center - Hardy (minimal, temporary distress) - Chronically Distressed (consistent high levels of distress) - Resilient (high levels of distress that improve) - Delayed Distress (late increases in distress) - Enhanced Functioning (better than baseline) Most children with cancer are Hardy; someevidence of Delayed Distress in young adult survivors Most parents and siblings show Resilience Growing evidence of Enhanced Functioning
  • Diagnosis Range of expected strong emotions across at The Children’s Hospital of Philadelphiafamily members: The Cancer Center - Shock, disbelief, denial - Confusion, frustration - Anxiety, fear, helplessness - Sadness, mourning, grief - Guilt, anger
  • Diagnosis Within 2 weeks of diagnosis, 85% of parents report at The Children’s Hospital of Philadelphiasignificant distress The Cancer Center Parents have more anxiety, poorer quality of life,and more symptoms of depression Within 1 month of diagnosis, 51% of moms, 40% ofdads qualify for a diagnosis of Acute Stress Disorder Within 1 month of diagnosis - 75-83% of parents reported re-experiencing - 70-83% reported avoidance - 83% reported arousal
  • Diagnosis The reactions of the child with cancer to diagnosis at The Children’s Hospital of Philadelphiavary depending upon his or her age The Cancer Center Some symptoms of anxiety, fear, and sadness arecommon May see some developmental regression Overall, research does NOT indicate increasedrates of depression or traumatic stress symptoms inpatients shortly after diagnosis
  • Diagnosis Siblings report loneliness, marginalization, at The Children’s Hospital of Philadelphiajealousy and worry The Cancer Center Within 1 month of diagnosis, 57% of siblings reportimpaired emotional quality of life Nearly 40% of siblings report significant difficultieswith memory concentration and learning within onemonth after cancer diagnosis Rates of traumatic stress symptoms have beenunexplored
  • Diagnosis Marital distress is common: 40% of married at The Children’s Hospital of Philadelphiaparents indicating problems The Cancer Center Parenting stress is typical: over-protection,impatience, relaxed rules and inconsistency indiscipline is reported by 32% of fathers and 48% ofmothers Families report pulling closer together: 60% offamilies report increased cohesion Benefit finding and traumatic growth have beenunexplored
  • Treatment Two-thirds of parents report that dealing with at The Children’s Hospital of Philadelphiatheir own intense emotions and traumatization is The Cancer Centerthe greatest challenge Feelings of helplessness, powerlessness, andlack of control are common Anxiety and depression symptoms decreasewithin the first three months after diagnosis, butremain significantly elevated for parents
  • Treatment At 6 months post-diagnosis, 40-50% of parents at The Children’s Hospital of Philadelphiacontinue to report increased distress The Cancer Center During the first few months of treatment about44% of parents qualify for a diagnosis of PTSD About one year after diagnosis, 68% of momsand 57% of dads report moderate to severe PTS By 24 months post-diagnosis most parents reportdistress levels at normative levels; a small subgroupremain distressed
  • Treatment During treatment children with cancer continue at The Children’s Hospital of Philadelphiato show little or no evidence of emotional or The Cancer Centerbehavioral problems Some reports suggest LOWER levels ofdepression and anxiety than healthy children Traumatic stress symptoms are present, butmean levels are no different from healthy children
  • Treatment Disruptions in family life take a toll on siblings; at The Children’s Hospital of Philadelphiaabsence of their brother or sister, separation from The Cancer Centerparents and poor communication fuels confusionand anxiety Three-fold increase in behavior problems, two-fold increase in emotional problems, decrements inquality of life, declines in school performance forsiblings Within 2 years of diagnosis, 25% qualify for adiagnosis of PTSD, 60% in moderate to severerange for PTS Report positive aspects of the experience
  • Treatment Significant marital distress continues to be at The Children’s Hospital of Philadelphiareported among 25 to 30% of parents throughout The Cancer Centerthe first year post-diagnosis Inconsistent discipline continues as parents oftenfeel guilty about putting their child through treatment Role overload is common as family membersmust juggle their typical responsibilities with needsof treatment Parenting Stress increases once the childreaches remission
  • Survivorship Time of ambivalent feelings: relief and joy coupled at The Children’s Hospital of Philadelphiawith fear and uncertainty The Cancer Center Depression and anxiety scores no longer elevatedfor most, a subset of parents continue to havedistress Traumatic Stress symptoms remain: - Moms: 14 to 20% with current PTSD, 27 to 30% with PTSD at some time since diagnosis of cancer; up to44% in moderate to severe range - Dads: 10% current PTSD, 12% PTSD since cancer; 33 to 35% in moderate to severe range
  • Survivorship 97% of moms, 87% of dads indicate at least one at The Children’s Hospital of Philadelphiasymptom of re-experiencing The Cancer Center 64% of moms, 44% of dads report at least 2symptoms of physiological arousal 34% of moms, 16% of dads report at least 3symptoms of avoidance Parents also report positive outcomes of theexperience - 86% of moms and 62% of dads indicate a positive change in the way they think about their life - 58% of moms and 48% of dads indicate a positive change in how they treat others
  • Survivorship Adolescent survivors report some traumatic at The Children’s Hospital of Philadelphiastress: The Cancer Center - 5% current PTSD; 8% PTSD since cancer diagnosis - 12-18% moderate to severe traumatic stress - 73% report re-experiencing; 41% report arousal; 16% report avoidance More positive view of life, good self-esteem,broader perspective Enhanced maturity, greater compassion andempathy, new values and priorities, new strengths 53% indicate a positive change in how they thinkabout life; 42% indicate a positive change in theirplans for the future
  • Survivorship Young adult survivors of childhood cancer do not at The Children’s Hospital of Philadelphiashow elevated rates of anxiety or depression The Cancer Center Report more traumatic stress than adolescentsurvivors or controls: - 18-22% current PTSD; 21% PTSD since cancer - 80% report re-experiencing; 42% report arousal; 44% report avoidance
  • Survivorship Family patterns forged during treatment may at The Children’s Hospital of Philadelphiacontinue and marginalize siblings The Cancer Center Among siblings of survivors, about 32% reportmoderate to severe PTS Siblings report many positive outcomes: - enhanced maturity, responsibility, independence and personal growth - more empathy, thoughtfulness, compassion
  • Summary Distress is greatest at diagnosis and improves at The Children’s Hospital of Philadelphiaover time reaching near normal levels by 2 years The Cancer Centerpost-diagnosis Parents report the most distress within thefamily, followed by siblings The child with cancer seems to function quitewell throughout the cancer experience Evidence of symptoms of traumatic stress andtraumatic growth across family members
  • your Cope Family Helping The Cancer Centerat The Children’s Hospital of Philadelphia
  • Be patient…with yourself, your family, and treatment. It takes time: at The Children’s Hospital of Philadelphia to learn about cancer, treatment and the medical system The Cancer Center to adjust emotionally to understand the reactions of family members to find the best way for your family towork together and support each other to accept the uncertaintyWith time it gets better
  • Help your children…understand what is happening. Talk to them; at The Children’s Hospital of Philadelphia be age-appropriate (young children don’t need detail; explain The Cancer Center physical changes, treatment course, changes in routine) be reassuring and supportive (this is not punishment; it is not contagious; they will not be abandoned; their 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)Talk with your children
  • Share your feelings…with family and friends. It is important: at The Children’s Hospital of Philadelphia The Cancer Center to recognize how your thoughts and feelings impact yourbehavior with others to talk about how you feel to share your feelings with and encourage children toexpress their feelings to understand positive emotions are OK to accept the feelings of othersEmotional connections help
  • Rely on others…to help you and your family. Ask or allow at The Children’s Hospital of Philadelphia The Cancer Center the medical team to help educate and prepare you and yourchildren for what is to come extended family to help maintain your home, spend time withhealthy siblings, become involved in medical care friends, neighbors, community members to provide support to your family the school to help your childrenDon’t try to go it alone
  • Establish routines…and maintain rules. Consistency helps: at The Children’s Hospital of Philadelphia The Cancer Center offset the unpredictability of cancer allow children to feel more safe and secure ward off behavioral problems in the future give everyone something to expectCreate your “new normal”
  • Take care…of yourself. To be at your best: at The Children’s Hospital of Philadelphia The Cancer Center 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 look for realistically positive aspects ofyour experience don’t pressure yourself to do too muchReplenish yourself
  • Ask for help…from a psychosocial provider when: at The Children’s Hospital of Philadelphia The Cancer Center emotional reactions are interfering with cancer treatment orappropriate follow-up care someone has problems with day to day functioning that aren’timproving with time differences in coping style are causingrelationship problems you have concerns and need adviceGet help when needed
  • Conclusions Childhood cancer is a at The Children’s Hospital of Philadelphiastressful, potentially traumatic The Cancer Centerevent Research documents highlevels of distress for familiesthat improve with time A Traumatic Stress Modelseems to capture the nature ofcancer-related distress - explains symptoms of distress - explains possibility of growth
  • Conclusions at The Children’s Hospital of Philadelphia To maximize adjustment: The Cancer Center - 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 you need it