Karen Hurley, Ph.D., shares strategies for managing the sources of conflict that surround genetic testing within families. Includes whether or not to pursue testing, reaching out to at-risk relatives and the stress that can arise from hereditary disease. Karen Hurley, Ph.D., is a licensed clinical psychologist specializing in hereditary cancer risk. Presented in collaboration with FORCE.

1. Family Communication
Karen Hurley, Ph.D.

2. “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

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

4. 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

5. 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

6. 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

7. Inheritance
• Stories passed down from time when cancer was
less treatable
• Family memories of illness and loss
• Family styles of coping

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

9. 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

10. 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

11. 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

12. Put your mask on before helping others

13. 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

14. 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
14
Lepore et al., 2000
Lepore & Revenson 2007
Andrykowski & Pavlik 2011

15. “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

16. “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

17. 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 view
Signals an expectation that can lead to resentment

18. “You gotta stay positive!”
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19. “Don’t go to the hardware
store looking for oranges”
Family members will
likely not change long-
term patterns because
you need them more

20. 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

21. Faultlines
• Decision may
expose weaknesses
in relationship
• Decision may reveal
that habitual coping
strategies are
inadequate
Yalom, Existential Psychotherapy, 1980

22. 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

23. 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

24. Case: Parentified Child
• Danielle tested positive for BRCA1 mutation
• Danielle to her father: “You’ll have more baggage
about this than I will”

25. 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

26. 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

27. 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)

28. “How do I tell them?”
• Practical
• What words do I use?
• Emotional
• How do I go through with this?

29. PACT: Parents at a Challenging Time
Massachusetts General Hospital Cancer Care Website
www.mghpact.org

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

31. Communication guidelines
• #2: Listen for what your child already knows, and
build on that.

32. Communication guidelines
• #3: Use simple, age-appropriate language (not
euphemisms)
Boo-boo
Not a boo-boo

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

34. Communication guidelines
• #5: See communication as a process, not a one
time event.

35. 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

36. Respite
• Having recovery time
increases resistance to
stress
• Caregivers who don’t
take breaks risk
distress, health
problems and isolation

37. “The FEMA year”

38. 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

39. 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

40. 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
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41. Family QOL
• Functional routines
• Comfort level with roles
• Balance of warmth and structure
• Quality time
• Respite in times of stress
• Minimize hassles
• Outside supports

42. Communication/support tools
www.lotsahelphinghands.org
www.caringbridge.org

43. Legacy
• Life lessons:
• Uncertainty
• Adversity
• Uncontrollable
events
• Decision-making
• Strong emotions

44. 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?

45. 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?