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Cancer’s Effect on Families

Melissa A. Alderfer, PhDNemours Children’s Health System &

Stanley Kimmel Medical College at Thomas Jefferson University

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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

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Families and Childhood Illness

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Families & Illness

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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

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Depression

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Anxiety

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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

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Posttraumatic Stress

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Posttraumatic Stress

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Posttraumatic Stress

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Family Reactions

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The Experience of Childhood Cancer

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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

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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

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Range of expected strong emotions across family members:

Shock, disbelief, denial

Confusion, frustration

Fear, worry, helplessness

Sadness, mourning, grief

Guilt, anger

Diagnosis & Treatment Initiation

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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Transition to young adulthood may be more difficult

Young Adult survivors may report more PTS symptoms than adolescent survivors or controls

Young Adult Survivors

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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

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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

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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

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Evolution of the Traumatic Stress Model

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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

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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

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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

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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

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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

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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

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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

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Helping your Family Cope

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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

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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)

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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

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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…

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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”

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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

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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

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Conclusions

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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

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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

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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

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Thank you for your attention!

Melissa A. Alderfer, PhDNemours Children’s Health System &

Stanley Kimmel Medical College at Thomas Jefferson University