Navigating Family Issues with Breast Cancergbcc.kr/upload/SY08-2_Frances M. Lewis.pdf“We haven’t...

Navigating Family Issues with

Breast Cancer

Frances Marcus Lewis, PhD, RN, MN

Global Breast Cancer Conference 2013

October 12, 2013

Cancer causes ripple effects in the family.

Cancer is a personal experience for the family member, 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

Over long periods, neuro-endrocrine

activity can alter tumorgenesis &

production of growth factors & other cell

growth regulators.

Antoni et al, 2006, p. 243

CNS Activation & Cell Growth Regulation

“Stuck Points”

Every family –every family –

commonly gets stuck with some cancer-

related challenges….it is part of being a

family.

Distress in Spouse-caregiver

“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-caregiver


“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.”


“The emotions are the things that I seem to be

unprepared for…and I want to be sensitive

to those emotions and I don’t want to react

negatively, which I have a tendency to do…Like

when she’s having an emotional feeling, she

gets hostile in words and I may interpret that

hostility…In fact, she’s saying, ‘I am feeling bad,

listen to me.’ Instead, I misinterpret that and fire

something back at her…”

Predicting Spouse-Caregivers’ Depressed Mood

Overall Model F-Statistic 16.32, p<.001 Adjusted R-square 0.50

Std. Beta t-statistic p-value

Significant predictors:

Spouse marital adjustment -0.28 -4.78 <.001

Job-related concerns 0.28 4.63 <.001

Concern for wife’s well being 0.15 2.44 .02

Feeling excluded from med team 0.11 2.14 .03

Illness-related uncertainty -0.26 -4.15 <.001

Lewis & Fletcher, 2008, JCO

Severe Depression in Spouse Caregivers

Severe depression in male caregivers of

women with breast cancer.

Retrospective cohort study. Unbiased,

nationwide, population–based data.

Male partners of women with breast cancer

had increased risk of being hospitalized

with affective disorder (hazard ratio

1.39) with a dose response pattern for

severity of breast cancer.

Nakaya et al., 2010

Marital Adjustment & Communication

“We fight more, argue more.

Any little thing whatever,

upsets her, which is just

about anything.”

Marital Adjustment & Communication

66% of couples want to work on

ways to better deal with tension in

the marriage related to the cancer

or be together as a couple with the

cancer

Shands et al., 2006

Role Strain in Spouse-Caregiver: Diagnosis &

Treatment

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 help her

Zahlis & Lewis, 2010

Having Divergent Views on Ways to

Heal

The spouse-caregiver does not

want the patient to be sad, think

sad thoughts, or listen to sad

stories.

But the patient wants the spouse-

caregiver listen to and support

feelings, even sad ones.

Couple-time is given low priority.

“Our relationship has changed

since the cancer….It’s like everything

else takes priority over us spending

time together, just the two of us.”

Parenting Issues and Children

Ill parents report not knowing

how to respond or help their

child or have the energy to

support them

“We haven’t really discussed it

(the cancer). We really haven’t

talked a lot about it. I didn’t want

to push anything. I didn’t want

to scare her, and I kind of thought

that maybe when she was ready, she

would ask me questions…When she

asks, then we will discuss it.”

Diagnosed Mother



“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.”

Distress in Children

“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


“I was really afraid. The first thing that came to my mind

was, ‘My mom’s going to die and we only have so long to

be together any more.’ And I was just…I was pushing for

anything that we could do together - just be with her as

much as I could. And I pretty much assumed that she was

going to die, the first month or so.”

f-12yr/16yr


“I didn’t want to upset her.

I didn’t want to, you

know, like make her cry or

anything.”


The majority (81%) of interviewed children were worried

their mother would die from the breast cancer. Zahlis, 2001

Tested Programs for Families

Impacted by Breast Cancer

Enhancing Connections Program

Helping Her Heal Program

Enhancing Connections

Program

Frances Marcus Lewis, Principal Investigator

RO1 CA78 424

Goals:

Decrease parent’s depressed mood and

anxiety

Improve parenting skills and confidence to

communicate with child about

mother’s breast cancer

Improve the quality of the parent-child

relationship

Improve child’s behavioral-emotional

adjustment

6-state randomized clinical trial

Enhancing Connections Program

Program A Program B

Data Collection

Occasion 1

Data Collection

Occasion 1

Data Collection

Occasion 2 Data Collection

Occasion 2

Data Collection

Occasion 3

Data Collection

Occasion 3

2 month interval

Intervention 1

Intervention 2

Intervention 3

Intervention 5

Intervention 4

Study Design for Enhancing Connections Program

Educational Pamphlet &

Instructional Phone Call

1 year interval

Components of Enhancing Connections

5 patient counseling sessions -1 hour each

Child-Mother Interactive Booklet

Mother’s Workbook

Child’s Activity Booklet

Phone pager to patient counselor

Intervention Sessions

Session 1: Anchoring Yourself So You Can Help Your Child

Session 2: Adding to Your Listening Skills

Session 3: Building on Your Listening Skills

Session 4: Being a Detective of Your Child’s Coping

Session 5: Anchoring Skills and Celebrating Your Success

Enhancing Connections Selected Results

Variable Questionnaire

Child Behavioral-Emotional

Functioning

Total Problem Scale (CBCL)*****

Externalizing Scale (CBCL)****

Quality of Parent-Child

Relationship

Disclosure of Negative feelings (FPRQ)*

Disclosure of Bad Things Happening*

Parental Mood & Anxiety Center for Epidemiologic Studies-

Depression Scale (CES-D)***

State- Trait Anxiety Inventory (STAI)***

Parental Confidence Cancer Self-Efficacy (CASE):

Deal & Manage Subscale**

Help Child Subscale****

Parenting Skills Connecting & Coping Skills***

*p<.05 **p=.01 ***p<.009 ****p=.001 *****p=.0001 Lewis, 2011

Mother Depressed Mood

15.35

13.85

9.87

13.81

9.46

6.99

0

2

4

6

8

10

12

14

16

18

Baseline (T1) 2 mos post-baseline (T2) 12 mos post-baseline (T3)

ControlIntervention

T1-T2 p=0.039

Overall Model F-statistic=2.23 p=0.111

Mother State Anxiety

37.55

36.16

33.92

35.09

30.61

29.27

20

25

30

35

40


ControlIntervention

T1-T2 p=0.057


Parenting Skill Checklist: Mother Connecting & Coping Skills

19.90

22.04

21.05

19.59

23.49

21.33

17.00

18.00

19.00

20.00

21.00

22.00

23.00

24.00


Control

Intervention

Overall Model F-statistic=2.86 p=0.060 T1-T2 p=0.018

CBCL Total Problems Scale

48.08

46.63

45.13

49.42

44.47

45.33

41

42

43

44

45

46

47

48

49

50


Control

Intervention

Overall Model F-statistic=5.89 p=0.003 T1-T2 p=0.001

CBCL External Subscale

46.79 46.48

45.76

47.72

44.38

45.91

42

43

44

45

46

47

48


Control

Intervention


T1-T2 p=0.003

CDI Total Scale

1.61

1.36

1.47 1.52

1.21

1.05

0.00

0.20

0.40

0.60

0.80

1.00

1.20

1.40

1.60

1.80


Control

Intervention


T1-T3 p=0.025

CDI Ineffectiveness Subscale

0.43

0.36

0.54

0.44

0.35

0.29

0.00

0.10

0.20

0.30

0.40

0.50

0.60


CDI Ineffectiveness Subscale

Control

Intervention


T1-T3 p=0.008

Helping Her Heal Program

5 intervention sessions 45-60

minutes with structured in-session

skill building exercises

Printed at-home skill-building

assignments alone & with wife

Targeted areas of emotional support,

self-care, and specific types of

marital communication

R01 CA 11 4561

Program A Program B

Data Collection

Occasion 1

Data Collection

Occasion 1

Data Collection

Occasion 2 Data Collection

Occasion 2

Data Collection

Occasions 3 & 4

Data Collection

Occasions 3 & 4

Session 1

Session 2

Session 3

Session 5

Session 4

Study Design for Helping Her Heal Program

Mailed Pamphlet

3-month

3-month

3-month

Helping Her Heal Intervention Sessions

Session 1: Anchoring Yourself to Be Strong for Her

Session 2: Listening & Not Fixing: Letting Go of

Superman

Session 3: Gaining a Deeper Understanding of Her

Session 4: Connecting with Her: Creating Special

Times Together

Session 5: Putting the Pieces Together

The ultimate goal is to help families thrive.

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