navigating family issues with breast cancergbcc.kr/upload/sy08-2_frances m. lewis.pdf“we haven’t...
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Navigating Family Issues with
Breast Cancer
Frances Marcus Lewis, PhD, RN, MN
Global Breast Cancer Conference 2013
October 12, 2013
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Cancer causes ripple effects in the family.
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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
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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
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“Stuck Points”
Every family –every family –
commonly gets stuck with some cancer-
related challenges….it is part of being a
family.
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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
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Distress in 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.”
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Distress in Spouse-caregiver
“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…”
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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
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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
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Marital Adjustment & Communication
“We fight more, argue more.
Any little thing whatever,
upsets her, which is just
about anything.”
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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
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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
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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.
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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.”
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Parenting Issues and Children
Ill parents report not knowing
how to respond or help their
child or have the energy to
support them
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“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
Parenting Issues and Children
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Parenting Issues and Children
“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.”
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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
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Distress in Children
“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
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Distress in Children
“I didn’t want to upset her.
I didn’t want to, you
know, like make her cry or
anything.”
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Distress in Children
The majority (81%) of interviewed children were worried
their mother would die from the breast cancer. Zahlis, 2001
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Tested Programs for Families
Impacted by Breast Cancer
Enhancing Connections Program
Helping Her Heal Program
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Enhancing Connections
Program
Frances Marcus Lewis, Principal Investigator
RO1 CA78 424
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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
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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
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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
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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
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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
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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
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Mother State Anxiety
37.55
36.16
33.92
35.09
30.61
29.27
20
25
30
35
40
Baseline (T1) 2 mos post-baseline (T2) 12 mos post-baseline (T3)
ControlIntervention
T1-T2 p=0.057
Overall Model F-statistic=1.88 p=0.156
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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
Baseline (T1) 2 mos post-baseline (T2) 12 mos post-baseline (T3)
Control
Intervention
Overall Model F-statistic=2.86 p=0.060 T1-T2 p=0.018
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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
Baseline (T1) 2 mos post-baseline (T2) 12 mos post-baseline (T3)
Control
Intervention
Overall Model F-statistic=5.89 p=0.003 T1-T2 p=0.001
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CBCL External Subscale
46.79 46.48
45.76
47.72
44.38
45.91
42
43
44
45
46
47
48
Baseline (T1) 2 mos post-baseline (T2) 12 mos post-baseline (T3)
Control
Intervention
Overall Model F-statistic=4.66 p=0.01
T1-T2 p=0.003
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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
Baseline (T1) 2 mos post-baseline (T2) 12 mos post-baseline (T3)
Control
Intervention
Overall Model F-statistic=2.81 p=0.063
T1-T3 p=0.025
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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
Baseline (T1) 2 mos post-baseline (T2) 12 mos post-baseline (T3)
CDI Ineffectiveness Subscale
Control
Intervention
Overall Model F-statistic=4.36 p=0.014
T1-T3 p=0.008
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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
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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
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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
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The ultimate goal is to help families thrive.