Family Communication

Karen Hurley, Ph.D.

“Happy families are all alike; every unhappy family is unhappy in its own way.”

From Anna Karenina (Tolstoy, 1877)

Happy families are all alike; differences from one to the next emerge in the face

of challenge

Communication challenges• Informing at risk relatives• Giving and receiving support• Role strain• Conflicting needs• Multiple health care professionals

The telephone/whisper game• Study of 89 patients

communicating test results to relatives

• Results showed “fading out” of message between communication steps

Vos et al, Fam Cancer, 2011

The telephone/whisper game

Genetic counselor Proband Relative

Communication of risk information

Recall of GC information

Interpretation of recalled GC information

Recall of proband’s interpretation

Interpretation of recalled proband’s interpretation

Vos et al, Fam Cancer, 2011

Two kinds of families

Many cases of cancer• Multiple instances of

illness and bereavement

• Caretaker and role strain

• Developmental impact

Little or no cancer• Cancer diagnosis comes

out of the blue• Shock to both individual

and family

Inheritance• Stories passed down from time when cancer was

less treatable

• Family memories of illness and loss

• Family styles of coping

Vivid pictures in your head make numbers bigger or smaller than they appear

Cognitive short-cuts• Representativeness: Interpreting risk numbers

based on similarity to an example or ideal:

• “I’ve always been a very positive person, so I’m just not the type to get cancer.”

• “I look like Mom, and we have the same body type, so I know I’m going to test positive.”

Tversky & Kahneman, 1974

Cognitive short-cuts• Availability: Interpreting risk numbers based on

vividness or frequency:• “Grandma was in so much pain and got so thin before

she died; I just know that’s what could happen to me, so I know what I have to do.”

• “All of my mom’s sisters got breast cancer, of course I’m going to get it.”

Tversky & Kahneman, 1974

Randomness & Responsibility• Genetic risk is random –science cannot explain who

inherits a mutation and who doesn’t

• Goes against beliefs about order and fairness

• Guilt is a normal response to uncontrollable events-offers an illusion of control

• Extremely difficult admit helplessness, especially in regard to one’s children

Put your mask on before helping others

What does “putting yourself first” mean?• Have adult support system

• Acknowledge own feelings of guilt, sadness, fear, etc.

• Reflect on beliefs about what makes you a good person/parent/spouse etc.

• Engage in self-care BEFORE trying to influence behavior of others

Social Constraint• Defined as holding back on your feelings even if you

have a good support system• Motivated by:

• Isolation (“No one to talk to”)• Mistrust (“People don’t know how to be supportive”)• Helper identity (“I’m the one they lean on”)• Protecting others (“I don’t want to worry him”)

• Associated w/ increased depressive & PTSD symptoms over time

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Lepore et al., 2000Lepore & Revenson 2007Andrykowski & Pavlik 2011

“It will just upset them.” • Silence may be well-meant, but it often isolates

rather than connects

• Delayed disclosure may be met with feelings of betrayal or eroded trust

• Denies others the opportunity to grow or rise to the occasion

“She’s in denial”• Resist urge to “tear it

down”

• Respect it as a defense – if they could handle it differently, they would

• Empathize with the emotions underneath

• Avoid power struggles; discuss neutral “differences”

Your job is to aim well; their job is

to grab on

The “just” word• “You just have to…” = Your feelings aren’t important• “You just have to…” = Your objections are minor• “If you’d just…” = Everything would be fine• “If you’d just…” = That would mean you love me

Signals loss of contact with another person’s point of viewSignals an expectation that can lead to resentment

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“You gotta stay positive!”

Hope

“Don’t go to the hardware store looking for oranges”

Family members will likely not change long-term patterns because you need them more

The Mensch Test

“Of course I’ll love you no matter what.”

• May be hard to believe even if true• Does not allow room for doubts or sadness• Safe space and support essential for

communication

Faultlines

• Decision may expose weaknesses in relationship

• Decision may reveal that habitual coping strategies are inadequate

Yalom, Existential Psychotherapy, 1980

Case: Parentified Child• Mother died of BC when Danielle* was 8• Intense grief; father and daughter became “best

friends and best support”• Older cousin developed BC and tested positive for

BRCA• Danielle developed depression & anorexia at 16• Danielle went to genetic counselor on her 18th

birthday and asked for BRCA testing

*Not her real name

Case: Parentified Child• Danielle required three visits to fully accept risks

and benefits of testing

• Risk of cancer in future vs. risk of anorexia relapse in present

• Assigned task of self-care plan to underscore seriousness of learning her mutation status

Case: Parentified Child• Danielle tested positive for BRCA1 mutation

• Danielle to her father: “You’ll have more baggage about this than I will”

Autonomy• Person has the right to choose path in dealing with

genetic risk• Impact on family can put constraints on autonomy• People are afraid to hurt each others feelings• People are afraid to see someone get sick or die

Autonomy challenges in genetic risk

• Lack of control over future

• Interruption or alteration of life goals (e.g., relationship, vocational, fertility)

• Threat of mortality

2 KM

On her sixth birthday, two of her friends came over and brought her presents. One of the presents was big, and the other was small. The friend who’d brought the big present was laughing at the smaller present.

HONY , 8/9/15

It was so hard for me to not intervene. I was so used to telling my daughter how to act and what to say. But I decided that this time I’d sit back and see how she responded. “I like both my presents the same,” she said. And I remember feeling so proud, because I knew that what I’d been teaching her was working.”(Karachi, Pakistan)

“How do I tell them?” • Practical

• What words do I use?

• Emotional• How do I go through with this?

PACT: Parents at a Challenging Time

Massachusetts General Hospital Cancer Care Websitewww.mghpact.org

Communication guidelines• #1: The worst way to hear news is to overhear it.

Communication guidelines• #2: Listen for what your child already knows, and

build on that.

Communication guidelines• #3: Use simple, age-appropriate language (not

euphemisms)

Boo-boo

Not a boo-boo

Communication guidelines• #4: Allow child to tell you how much or little they

want to know

Communication guidelines• #5: See communication as a process, not a one

time event.

Battle mind• Common coping mechanism for getting

through surgery or treatment

• “Get it done” mentality regardless of how you feel or the long-term cost

Respite• Having recovery time

increases resistance to stress

• Caregivers who don’t take breaks risk distress, health problems and isolation

“The FEMA year”

Non-events as stressors/losses

• Life goal or wish that is not fulfilled:• Not conceiving naturally because you choose PGD

• Life goal of one person is not fulfilled, which then affects another:

• Not having a child means your parent doesn’t become a grandparent

Schlossberg et al., Counseling adults in transition, 1995

Non-events as stressors/losses• Outcome that is closed off due to another choice or

event:• Declining a job offer in order to have preventive surgery

• Delayed non-event: High probability event will not occur, but still uncertain

• Not sure of meeting a significant other in time to start a family

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Resilience• Takes time• Involves adjustments to treasured goals, values and

identity• Entails losses• May require new skills• Is reciprocal – individual affects family and vice

versa

Family QOL• Functional routines• Comfort level with roles• Balance of warmth and structure• Quality time• Respite in times of stress• Minimize hassles• Outside supports

Communication/support tools

www.lotsahelphinghands.org

www.caringbridge.org

Legacy• Life lessons:

• Uncertainty• Adversity• Uncontrollable

events• Decision-making • Strong emotions

Reflections• When did you first become aware of cancer in the

family?

• How old were you when your [relative] got cancer?

• What was it like for you during that time?

• How did it affect the family?

Reflections• Some families have someone who is the main

decision-maker or main communicator in the family. Who might that be in your family?

• Every family has its own “mini-culture” about things like coping styles and expressing emotion. How would you describe yours?