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Male Caregivers of Breast
Cancer Patients
SARAH DIHMES, M.A.
MEHRAN HABIBI, M.D.
Increase in Male Caregivers
The number of cancer patients receiving informal care at home
is at an all-time high.
 66 million Americans (3 out of 10 homes) have a family member delivering
informal care to a loved one


National Center on Caregiving
At least 50% of the 1.3 million cancer diagnoses will be cared for by
someone in the patient’s immediate family.

National Alliance for Caregiving & American Association of Retired Persons, 2009).
 99% of cancer patients were receiving informal care

Yabroff and Kim, 2009
 75% of married women diagnosed with breast cancer report receiving
copious support from their spouse.

Ciambrone & Allen, 2005
 Husbands comprise 30-50% of spousal caregivers

Campbell & Carrol, 2007
A Rise in Male Caregivers
Kim, Loscalzo, Wellisch, & Spillers, 2006
Why are there more male caregivers now?
 Human life span is
increasing.

Advances in medicine
 Expensive healthcare
costs

Limit feasibility o formal
caregiving
 Evolution of Gender
Roles

Paradigm shift in
traditional male and
female gender roles.
Limited Research on Male Caregivers
 Men as control subjects
 Focus is on elderly
husbands caring for
wives with Alzheimer’s
disease.
 Lack of explanatory
framework about men’s
experiences.
Gender Differences in Caregiving
Who copes better?
Men are LESS likely to:
Men are MORE likely to:
 Seek support for their own
 Provide physical care.
 Perform more tasks related to
hygiene, communication,
mobility, dressing and feeding.
 Sacrifice gendered roles in





physical and mental health
needs.
Report exacerbated
physical ailments
associated with giving care.
Practice health promoting
behaviors
Ask for help
Emotionally cope
Identify themselves as
caregivers.
the family.
 Work outside the home
while being a caregiver.
 Accept caregiving as an
extension of their marital
vows.
 Use a stoic approach.
www.mengetdepression.com
Adherence to Traditional Masculine Norms
 Traditional masculine norms commend:
 Self-reliance
 Physical Strength
 Emotional Control
 Hegemonic masculine beliefs, often thought of as societal ideals,
prohibit some men from demonstrating typical DSM-IV
symptoms of depression and caregiver burden.
 Emotional Expression

Men who adhere to traditional masculine roles have more difficulty:
Judging the non-verbal expressions of others
 Find expressing their emotions more stressful

Measurement Issues
DSM-IV Depressive Symptoms










Crying*
Sadness*
Guilt *
Worthlessness *
Anhedonia
Appetite/ weight change
Sleep change
Concentration difficulties
Fatigue
Psychomotor retardation/ agitation
Male Specific Symptoms of Stress
Non-Typical Depressive Symptoms
 Drugs & alcohol
 Aggression &
irritability
 Interpersonal conflict
 Preoccupation with
work
*Not supported by traditional masculine
beliefs.
Men who adhere to traditional masculine norms often experience stress through more
masculine congruent behaviors and emotions
Magovcevic & Addis, 2008
Analyses
 Compliance
 Will compliance differ between those who completed the
survey in the clinic compared to those who completed the
survey online?
 Stage of Cancer
 Does the stage of breast cancer influence male caregivers’
experiences of stress?
 Types of Treatment
 Will the types of treatment impact male caregivers’ experience
of stress?
This Study
APPLICATION OF THE STRESS
PROCESS MODEL IN HUSBAND
CAREGIVERS OF BREAST CANCER
PATIENTS
The Stress Process Model
 2006: Family Caregiver Alliance held a national
conference to bring together researchers,
policymakers, and practitioners.
 They produced a report: Caregiver Assessment:
Voices and Views from the Field

Established national standards for all caregiving research
and clinical practice.
 Originally created from and for CGs with dementia
Conceptualized Model of Pearlin’s Cancer Caregiver Burden Model
Background and Context
Demographics:
-Age
-Gender
- Culture
-SES
-Education
-Personal history
Caregiving History:
-Caregiver’s relationship
to patient
-Length of time delivering care
-Specific health problems of
cancer patient
-Marital quality pre-illness
-Medical resource availability
Primary Stressors
Objective Indicators:
-Activities of Daily
Living
-Instrumental Activities of Daily
Living
-Type of cancer
-Treatments
Subjective Indicators:
-Patient’s level of pain
-Patient’s mental health
Secondary Stressors
Roles Strains:
-Family Conflicts
-Occupational Strain
-Economic Strain
-Social Strain
Intrapsychic Strains:
-Self-Esteem
-Mastery
-Loss of Self
-Role Captivity
-Competence
-Gain
Mediators
Coping & Social Support
Outcomes
-Depression
-Anxiety
-Physical Health Problems
-Irascibility
-Giving up Caring Role
Operationalized Male Caregiver Burden Model
BACKGROUND & CONTEXT
VARIABLES
PRIMARY
STRESSORS
•Demographics:
•Males
•Age
•SES
•Education
•Personal history
•Caregiving History:
•Relationship to patient
•Length of time delivering care
•Specific health problems of cancer
patient
•Objective Indicators:
•Activities of Daily Living
•Instrumental Activities of
Daily Living
•Type of cancer
•Treatments
•Subjective Indicators:
•Patient’s level of pain
•Patient’s mental health
MEDIATORS
•Marital Satisfaction
•Shame & Guilt
Secondary Stressors
•Roles Strains:
•Vocational environment
•Domestic environment
•Social environment
•Sexual relationships
•Extended-family
relationships
•Psychological distress
MODERATOR
•Expressed Emotion from Wife
Outcomes
•Depression
•DSM-IV Criteria
•A-typical Symptoms
•Physical Health
Problems
Stress Process Model Domains
Background & Social Context
 Control Factors: gender & age
 Help identify pts at risk

i.e. If gender is a risk factor,
primary and secondary stressors
may be different for females and
males.
 Demographics

Most common: gender, age,
ethnicity, marital quality
Background &
Social Context
•Demographics:
•Males
•Age
•SES
•Education
•Personal history
•Caregiving History:
•Relationship to patient
•Length of time
delivering care
•Specific health
problems of cancer
patient
Primary
Stressors
 Caregiving History
 Family relationship to
patient (i.e. husband)
 Length of time being a
caregiver
 Quality of the relationship
 Specific health problems of
the cancer patient.
Secondary
Stressors
Stress
Outcomes
Primary
Stressors
Background &
Social Context
Secondary
Stressors
Secondary Stressors
Primary Stressors
• Factors that relate directly from
the cancer and caregiving
role.
•
Disease Specific:
•
Original Model: memory
impairment & disruptive
behavior
Objective Indicators:
•Activities of Daily
Living
•Instrumental
Activities of Daily
Living
•Type of cancer
•Treatments
Subjective
Indicators:
•Patient’s level of
pain
•Patient’s mental
health
Stress
Outcomes
 Subsequent stressors that may
occur from primary.
•
Caregiver’s experience of
primary ongoing demands
•
Vocational/ occupational strain is
especially difficult for men.
Roles Strains:
•Vocational environment
•Domestic environment
•Social environment
•Sexual relationships
•Extended-family
relationships
•Psychological distress
Primary
Stressors
Background &
Social Context
Stress
Outcomes
Secondary
Stressors
Stress Outcomes
•Depression
•DSM-IV Criteria
•A-typical Symptoms
•Physical Health Problems
• 61% of caregivers suffered from depression
• National Family Caregivers Association, 2000
• Men & women caring for their ill spouses experience an
increase in depression and decline in happiness
•
National Survey of Families and Households, 2009
• 31% of caregivers report that their role causes
emotional stress
•
National Alliance for Caregiving & AARP, 2009
Mediators


Independent variables cause the mediator, and the mediator
causes the dependent variable
Intermediary factor of the causal pathway
 Marital Satisfaction
 Psychological adjustment the marriage must undergo after a
diagnosis of cancer.
 Can exacerbate or strengthen emotional bonds.
 Pre-illness quality of the relationship is also important.
 Shame & Guilt
 Correlate with onset and maintenance of psychopathology.
 Individuals who are shame prone are at increased risk for MH
disorders.
Moderator

Interactions between the independent and dependent
variables that can strengthen, weaken, or account for the
relationships between the two – MacKinnon, 2008
 Expressed Emotion from Wife
 Definition: the extent to which a family member of a distressed
individual expressed critical, hostile, or emotionally
overinvolved statements towards their distressed family
member.
 Higher EE in a spouse predicts higher depression symptoms in
the depressed patient


Butzlaff & Hooley, 1998; Forin et al., 1992
Depressed patients living with
Type of Variable
Variables
Measures/ Instruments
Source of Report
Independent Variables:
Background Factors
Primary Stressors
Secondary Stressors
Demographics
Patient’s Overall
Well-Being
Caregiver Duties
Caregiver Tasks
of Daily Living
Role Strains
Potential Mediator
Marital Satisfaction
Potential Moderators
Expressed Emotion
Shame & Guilt
Demographic Form1
FACT-B 2
Male Caregiver
Male Caregiver
Activities of Daily Living
Instrumental Activities
Male Caregiver
Male Caregiver
Psychological Adjustment
to Illness Scale
Revised Dyadic
Adjustment Scale
Five Minute Speech Sample
Personal Feeling
Questionnaire-2
Male Caregiver
Male Caregiver
Female Patient
Male Caregiver
Dependent Variables:
Outcome Variables
Caregiver Depression
Beck Depression Inventory-II
Masculine Depression
Masculine Depression Scale
Symptoms
Physical Health Problems SF-12
Male Caregiver
Male Caregiver
Male Caregiver
Note. 1Caregivers demographics: age, culture, SES, education, medical information, mental illness history, and length of time delivering care.
2 Functional Assessment of Cancer Therapy- Breast (FACT-B) subscales: physical, emotional, functional well-being, social/ family, and
additional concerns.
Men Against Breast Cancer
 Do educational resources help?
 Do male caregivers who attend workshops and educational
seminars experience less stress than men who do not?
Medical Setting
 Is there a difference between medical settings?
 Do the male caregivers whose wives are receiving treatment at
Johns Hopkins University experience stress differently than
male caregivers whose wives are being treated at private
oncologists’ offices?