Caregiving burden, stress, and health
effects among family caregivers
of adult cancer patients
LCDR Margaret Bevans, RN, PhD, AOCN®
Clinical Nurse Scientist
Nursing Research & Translational Science
NIH Clinical Center, Nursing Department
Bevans M, Sternberg EM. JAMA. 2012
Disclosure
I have no financial, organizational or policy
conflicts to disclose with this presentation.
“I am a researcher in caregiving for hospice patients- but more importantly I am a
caregiver for my husband who has Stage IV head and neck cancer and who has
just recently completed chemotherapy. Despite my years of hospice practice and
my years of research on this very topic- I was still unprepared for the impact of
this on my world. I am better educated, more financially secure, and have an
outstanding support system and it still has been the hardest 6 months of my
life.”
“I work with physicians everywhere in my department, amazing family physicians,
amazing palliative care physicians- and yet- the focus of all concern remains with
my husband- and I’ve been surprised with how little any professional really
wants to hear about how this impacts me.”
“The official and unofficial health care teams simply do not acknowledge the
caregiver. I believe that is in part because it would be so hard to really
empathize as the pain of it is just too great.”
PhD Researcher, Associate Professor, Editor, Wife & Caregiver
Objective
• Describe the psychosocial, behavioral and physiological
effects of cancer caregiving.
• Identify methods to assess the impact on the health of
family caregivers.
• Definition:
– Caregivers are defined as those who provide unpaid care
to an adult
– Stressor: Providing care to a loved one undergoing cancer
treatment
– Stress response: the cascade of physiological and hormonal
changes that occur when an individual encounters a stressor
Background
Stress in Caregivers
Stressor
Stress Reaction
Psychological
Vulnerability/
Resources
Personality
Physiologic
variables
Illness
Demographics
Patient
Clinical Factors
Health
Behaviors
Adapted from Vitaliano, P.P., Zhang, J., Scanlan, J. Psychological Bulletin. 2003
“caregivers
are more likely to die”
Background
Caregiving – A pervasive experience
• Estimated 65.7 million people in the U.S. serve as unpaid family
caregivers
• Estimated 36.5 million households with a caregiver present
• Caregivers are predominantly female, on average 48 years of age
• One third take care of two or more people
• The majority care for a relative
• Three main reasons their recipient needs care:
– Old age
– Alzheimer's or dementia
– Cancer
Caregiving in the U.S., 2009; www.caregiving.org
Caregivers of Cancer Patients
Demographics and Clinical factors
• Average of 52 years, primarily Female 73%
• Relationship to Patient: Spouse 46%; Family Member/Non-Spouse
46%, Friend 8%
• Caregiver Network (>2 providers) 52%
• Employment Status Changed 50%
Clinical Characteristics:
• BMI: Overweight 36%; Obese (≥ 30) 30%
• Chronic Health Problems 60%
• Cardiovascular Medications 41%
• Diabetic Medications 9%
• Psychiatric Medications 13%
Bevans M, et al., Journal of Health Psychology. 2013
Case Study
Mr. Smith, 56yo, Acute Myelogenous Leukemia, MUD transplant
Mrs. Smith, 53yo, 3yrs post coronary artery bypass graft, primary caregiver
–Married 23 years
–Home in NJ, relocated to a temporary residence near center
–Both unemployed – he was self-employed contractor; she is on disability
–Daughter (in college), Sister (working FT)
–Elderly mother & aunt (80yo+) live together, father in nursing home
Mrs. Smith’s Challenges During HSCT Treatment
– multiple caregiving responsibilities (multiple readmissions; disability)
– managing two residences (143 miles apart)
– limited finances
– managing own health condition (CAD, arthritis)
• Smoking cessation attempted for her and her husband
– uncertainty of husband’s health and outcome
Background
Caregiver Burden in Cancer Care
Burden significantly higher for Cancer Caregivers
60
50.3
50
47.2
% frequency
40
30
31.5
24.9
20
19.4
17.6
10
0
3
(Low) 1-2
Cancer Caregivers
(High) 4-5
Non-Cancer Caregivers
Caregiving in the U.S., 2009; www.caregiving.org
Background
Caregiver Burden in Cancer Care
Emotional Stress
Caregiving Time/Week
71% Moderate/High Stress
46% >21 hr/week
23%
41%
29%
40%
23%
31%
13%
1 - 8 Hours
9 - 20 Hours
21 - 40 Hours
41+ Hours
low
moderate
high
Caregiving in the U.S., 2009; www.caregiving.org
Background
Caregiving: Allogeneic HSCT
• Physical Problems
– Sleep impairment, fatigue, cognitive dysfunction
• Social Problems
– Isolation, marital satisfaction, intimacy, financial concerns (work
balance)
• Emotional Problems
– Worry, distress (anxiety, depression), uncertainty
Beattie & Lebel, Psycho-Oncology, 2011; Gemmill et al., Cancer Nursing, 2011
Background
Outcomes
Caregiver psychological health and symptoms were significantly higher
compared to age, gender, ethnicity matched non-caregivers
60
p < 0.0001
p < 0.0001
50
p < 0.0001
p < 0.0001
40
Caregivers
n=21
Normal Volunteers
n=20
30
20
10
0
Anxiety
Depression
Fatigue
Sleep
Disturbance
Caregiver Outcomes
Distress, Sleep Quality and Fatigue
Bevans et al., Biology of Blood and Marrow Transplantation.2010
Background
Cancer Caregiving – Benefit Finding
Psychological
Adjustment
Benefit Finding
•
•
•
•
•
•
Acceptance
Empathy
Appreciation
Family
Positive Self-view
Reprioritization
•
•
•
•
•
•
Positive
Negative
Positive
Positive
Positive
Negative
Kim et al., Psychosomatic Medicine. 2007
Caregiver Illness
Physiological
Is Caregiving Hazardous to One’s Physical Health?
23% higher level of stress hormones15% lower level of antibody responses
Vitaliano, Zhang, Scanlan, Psychological Bulletin, 2003
Caregiving and risk of CAD in U.S. women
Caregiving for disabled/ill spouse for >9 hrs/week =  risk of CVD
Lee et al., Am J Prev Med 2003
Biologic Cost of Caring for a Cancer Patient
Profound ↑ in systemic inflammation (CRP); a ↓ decline in mRNA for anti-inflammatory
signaling molecules; ↓ in vitro glucocorticoid sensitivity
Rohleder et al., JCO 2009
A Labor of Love: The influence of cancer caregiving on health
behaviors
Positive and negative behavioral changes for cancer caregivers
Ross A, Cancer Nursing. 2012
Caregiver Outcomes
Translation to Practice
Each Encounter is an Opportunity
Inform
• Educate
Screen
• Screen
• Formal approach to screening
• Selection and administration of a questionnaire
Intervene • Remember the synergy: patients and caregivers
• Psycho-educational
• Problem solving skill development, Self-Care
• Skills Training
• Patient Caregiving Needs
• Therapeutic Counseling
• Martial/Family Care
Follow-up • Follow-up and Re-evaluation
Caregiver Resources
http://www.cc.nih.gov/wecare/index.html
Acknowledgments
Nursing Department
Clare Hastings, RN, PhD, FAAN
Gwenyth Wallen, RN, PhD
Physician Collaborators
John Barrett, MD
Richard Childs, MD
Alan Remaley, MD
Karel Pacak, MD
Steven Soldin, MD
Robert Shamburek, MD
Nursing Colleagues
Leslie Wehrlen, RN,BSN
Ladan Foruraghi, CRNP
Sharon Flynn, RN, CRNP
Nonniekaye Shelburne, CRNP
Alyson Ross, PhD, RN
Statistician
Karen Soeken, PhD
Li Yang, MS
Research Support
Stephen Klagholz, BS
Laboratory Staff
Rob Reger
Thanh Huynh
Social Work
Patricia Prince, MEd, LICSW
Collaborators
Matthew Loscalzo, MSW
James Zabora, ScD
Nursing Staff
Transplant Teams
Research Subjects