How medical traumatic stress impacts the whole familyAlex’s Lemonade Stand FoundationChildhood Cancer Symposium

Mary T. Rourke, Ph.D.August 22, 2015

Goals•What is pediatric medical traumatic

stress, and how is it related to childhood cancer?

•What does PMTS look like in individual family members, and how might it affect how families function?

•What can families to address PMTS?•What about posttraumatic growth?

How do families fare after cancer?

•Early research looked for psychopathology

•No evidence of significant depression, anxiety

•Lots of evidence for overwhelming resilience

•… and a pattern of distress that looked appropriate to the stressor of childhood cancer

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

•can vary in intensity •may be disruptive to functioning•may affect several family members …

differentlyNctsn.org

Some PMTS is normative

•> 90% of survivors and parents experience at least some PMTS

•… and many people continue to function very well

• Kazak, Alderfer, Rourke, et al. (2004). Posttraumatic stress symptom and posttraumatic stress• disorder in families of adolescent cancer survivors. Journal of Pediatric Psychology, , 29, 211-

219.•  

Moderate to severe PMTS is relatively common

Mothers Fathers Sibling Survivor0%5%

10%15%20%25%30%35%40%45%50%

Moderate to severe PMTS symptoms

Re-experiencing:• Thoughts popping into your

head• See, hear, smell a reminder

strong feelings, “punch in the gut”, nausea

Avoidance/Numbing:• Stay away from reminders• Limited memory for events• Social disconnection/withdrawal• Feel numb/frozen• Avoid participating in regular

activities

Arousal:• Difficulty concentrating• Feeling revved up, disorganized• Irritable outbursts• Feeling jumpy• Excessive worry• Difficulty sleeping• Feeling of unreality

DIAGNOSIS:• Surprising life threat• Abrupt reorganization• Frightening, painful,

unfamiliar procedures• Learning medical

lingoDURING TREATMENT:• Ongoing procedures• Child in pain• Waiting for test

results• Missing events• Hospitalization SURVIVORSHIP:

• Check-ups and tests• Medical late effects• Dealing with

reminders – your own and others’

Common traumatic moments

Understanding family experience of trauma•Different events are traumas for different

members of the family▫Parents: stress of diagnosis, waiting for

results, seeing child in pain▫Children: losing hair, procedures/pain,

dressing changes

•Trauma is not about objective “factual” events, but more about the story that you weave around the cancer

Development and trauma

•Children’s understanding and experience of events is different at different ages

•Retrospective understanding of events can change for everyone▫ with cognitive development▫ with changes in family

roles/relationships

Trauma in the Family Context

Cognitive:Automatic assumptions

Emotional:Raised arousal and anxiety

Behavioral and relational patterns:• Emergency mode – development freezes• Overprotection-Avoidance dynamic• Worrier-Eye roller pattern

Taking back your family story

• Acknowledge what you cannot control▫ This happened – It is what it is▫ Recognize when you are fighting the uncontrollable

• Focus on what you can control▫ Choose where to focus your attention▫ Work to acknowledge/manage your reactions▫ Take care of what needs care

• Build a story that highlights realistic positives▫ Your individual story▫ The family narrative – who were we; who are we now; who

we will beKazak et al. (1999). Surviving cancer completely intervention program (SCCIP): A cognitive-behavioral and family therapyintervention for adolescent survivors of childhood cancer and their families. Family Process 38: 175-191

Tools for Families•Soothe yourself•Build trust in relationships•Navigate difference/conflict

Soothing•Attend to your own emotional reaction•… and how you express that reaction•Use tools

▫Breathing▫Visualization

•Build intentional routines, especially around difficult moments

•Treat yourself when the going gets tough

Building trust in relationships• Aim to respond to each other (not to react)• Communicate intentionally:

▫Listen more than (and before) you talk▫Clarify questions before you answer them▫Acceptance▫Respect▫Curiosity▫Honesty

• Model honesty in your emotional reactions – communicates your trust that you can handle your own and others’ difficult feelings

Navigating conflict (or difference)•Accept that difference is normative

▫Of opinion▫Of experience▫Of worries▫Of approaches

•Find a common core to the family story▫Accommodate individual differences▫Tell stories in front of each other

•Build a way to understand others’ perspectives and experiences

Posttraumatic growth

•Positive changes or growth that result from experiencing the challenges of a traumatic event

•Evidence suggests most families experience some positive changes that they attribute to their childhood cancer struggle

•Some question of whether PMTS/PTSD is associated with PTG

PTG makes sense

•Family beliefs or “stories” relate to PMTS symptoms (not objective facts about events)▫Higher perceived life threat/treatment

intensity more PMTS

•Family narratives that emphasize effective control, closeness, positives or strength should minimize PMTS and lead to positive growth

Who Reports Growth?1 or more + changes

4 or more + changes

Adolescent Survivors

85% 32%

Mothers 90% 45%

Fathers 80% 26%

Barakat et al., 2006

Posttraumatic growth: common themes

•Meaning making•Appreciating life•Self-awareness•Family closeness•Empathy and maturity•Wanting to pay it forward

Barakat et al., 2006; Duran, 2013

My priorities are different than they would have been if I hadn’t had cancer. I’m a more caring person, I don’t take things for granted. I treat people with love, respect, and compassion, and I do things for others. I feel people’s pain and suffering from disease and death. For me, the cancer brought everything together – mind, body, and spirit. I walk a straighter path. Instead of chasing after things, I’m progressing forward.

(32 year old man)