cancer’s impact on the family & caregivers: enhancing well ......take care of the caregiver...

Frances Marcus Lewis, PhD

Fred Hutchinson Cancer Research Center

& SCCA

November 16, 2013

Cancer’s Impact on the Family

& Caregivers: Enhancing Well-

being for the Holidays & Beyond

“Stuck Points”

Where do families commonly

get “stuck” with the cancer?

Part I: Naming the natural “stuck points”

affecting all families

Cancer is a personal experience for the family, not a medical event.

Wimberly et al, 2005

Stressors & threat activate

interpretive processes in CNS.

CNS triggers fight-or-flight in

autonomic nervous system (ANS)

or defeat-withdrawal thru HPA. Antoni et al, 2006

Holidays and Families: Naming the

“stuck points”

Cancer can take over….and

before you know it, you have

given up your life as a couple

or a family.

Holidays invite us to take our

family back to the primacy

they deserve!

Stuck Points with Children

When a mother is newly diagnosed with cancer, the

majority (81%) of children will worry that their mother

will die from the disease, even when it is diagnosed at

an early stage. Zahlis, 2001


“Well, at times I was really scared.

And I remember sometimes

crying and like…sometimes, she

was really sick…And I didn’t

want my mom to pass away.”

f-8yr/11yr

Stuck Points with Parenting

“I was aware of the fact that the

kids’ emotional needs had to

take second place to mine and

that was hard. With the

fatigue, I just didn’t have

enough energy to listen.”

Patient/Mother

Maternal and Paternal Depressed Mood and

Adolescent Adjustment to Maternal Cancer

Neither Parent

Depressed

One Parent

Depressed

Both Parents

Depressed

Measures of Adolescent

Adjustment

N=29 N=37 N=21

M SD M SD M SD

CBCL Total Behavior

Problems 44.28 12.25 47.38 11.38 52.10 9.34*

CBCL Externalizing 46.14 10.52 48.16 9.60 52.10 9.19

CBCL Internalizing 47.31 11.50 48.86 11.04 53.48 9.52

Rosenberg Low Self-Esteem 1.73 0.32 1.66 0.44 1.50 0.48

STAI-Y Trait Anxiety 37.10 6.47 36.30 8.33 34.76 11.69

*F(2,84)=2.91, p=.06; Newman-Keuls range test, groups significantly different at

p<.05; Both Parents > Neither Parent

Lewis & Darby, 2004

Stuck Points in Spouse

“I think it has affected me not only emotionally,

when we first heard….but it had a physical

effect on me, too. I think I’ve lost some hair

over it...I just felt tired and no energy. Maybe

that was depression.”

Predictors of Spouses’ Depressed Mood Overall Model F-Statistic 16.32; p<.001 Adjusted R-square 0.50

Std. Beta t-statistic p-value Covariates

Spouse Age 0.08 1.30 .196

Spouse Years Education -0.15 -2.71 .007

Years Married -0.05 -0.82 .415

Adolescent child in home 0.01 0.11 .915

Active treatment 0.001 0.02 .988

Treatment complexity -0.03 -0.44 .663

Surgery type -0.13 -2.24 .03

Sought counseling -0.06 -1.18 .239

Independent variables

Spouse SPANIER total -0.28 -4.78 <.001

Job-related concerns* 0.28 4.63 <.001

Concern for wife 0.15 2.44 .016

Feeling excluded med team 0.11 2.14 .034

Illness-related uncertainty -0.26 -4.15 <.001

* Transformed variable: ln (job-related concerns + 1)

Stuck Points with Couples

“I feel as though I’m not

necessarily…

I’m not doing the job

that I’m here to do,

to help her and

protect her, sometimes.” Spouse of patient


“I have to spend a certain amount of time kind of stifling

what would be an outward reaction when she kind of

just throws it at me. And I think that’s her way of

dealing with it. And when I say throws it at me, just…

‘This is how I’m feeling.’ It’s almost the one place

where I don’t have a pocket for it…I don’t have a place.

Maybe my shoulders aren't big enough. ”

Spouse of patient


Feeling nailed by the cancer:

feeling helpless to save their wife;

lacking sleep because of supporting

her; being overwhelmed with her

emotions and how to support her

Zahlis & Lewis, 2010


“Our relationship has changed since

the cancer….It’s like everything else

takes priority over us spending time

together, just the two of us.”


“We fight more, argue more.

Any little thing whatever, upsets

her, which is just about

anything.”

“Stuck Points”

Part II: Naming what helps families get

“unstuck.”

Goal: to be healthy for the holidays and beyond

Put the cancer on the table, not under it.

Check in the with the children about how

things are going for them about the

cancer.

Cancer is a dynamic illness, not

a static disease. Families

benefit when they have

“kitchen table” talks with

each other on a regular basis.

Balance talking about the cancer without

dwelling on it.

Take care of the caregiver

Recognize caregiver’s care….Use magic words like,

Thank you….So appreciate….

When you recognize the caregiver’s care, it positively

affects the caregiver’s ability to cope.

Stajduhar et al., 2008

Be A Special Kind of Listener

for Each Other

Use “check in” questions with each other:

How are you doing with this? How is it

going for you?

Stop rolling the “fix it” tape in your head

when listening. Give your full attention

to what is being said.

Check in with each other: How are you doing with

this…? Listen quietly & attentively.

Stop “rolling a tape” that is in your head.

Do not judge what is being said.

Do not try to problem-solve or “fix things.”

Respond to thoughts and feelings; do not try

to redirect them.

Directly ask each other: What can I do to better support you?

Lewis, et al, 2008

Be A Special Kind of Listener

for Each Other

Scott, et al. 2004

Protect Your Self-care

Give yourself 15 minutes a day

minimum for decompressing

and self-care.

Self-care is not selfish!

Balance Family Life with the Cancer

Protect family rituals & traditions

Create new traditions

Balance Family Life with Cancer

Take a “vacation” from the

cancer

Build in intentional fun.

Laugh whenever possible!

The ultimate goal is to celebrate the holidays as a family. The family is

much more than the cancer!

cancer’s impact on the family & caregivers: enhancing well ......take care of the caregiver...

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