caregiving burden, stress, and health effects among family caregivers of adult cancer patients
DESCRIPTION
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. B evans M , Sternberg EM. J AMA. 2012. Disclosure. - PowerPoint PPT PresentationTRANSCRIPT
Caregiving burden, stress, and health effects among family caregivers
of adult cancer patients
LCDR Margaret Bevans, RN, PhD, AOCN®
Clinical Nurse ScientistNursing Research & Translational ScienceNIH 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
BackgroundStress in Caregivers
Adapted from Vitaliano, P.P., Zhang, J., Scanlan, J. Psychological Bulletin. 2003
Physiologicvariables
Psychological
Health Behaviors
Illness
Vulnerability/Resources
DemographicsPersonality
PatientClinical Factors
Stressor Stress Reaction
“caregivers are more likely to die”
BackgroundCaregiving – 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 PatientsDemographics 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 StudyMr. Smith, 56yo, Acute Myelogenous Leukemia, MUD transplantMrs. 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
Burden significantly higher for Cancer Caregivers
BackgroundCaregiver Burden in Cancer Care
Caregiving in the U.S., 2009; www.caregiving.org
0
10
20
30
40
50
60
31.5
50.3
17.6 19.4
47.2
24.9
Cancer Caregivers Non-Cancer Caregivers
(Low) 1-2 (High) 4-53
% fr
eque
ncy
BackgroundCaregiver Burden in Cancer Care
Caregiving in the U.S., 2009; www.caregiving.org
41%
13%24%
23%
Caregiving Time/Week
1 - 8 Hours 9 - 20 Hours 21 - 40 Hours 41+ Hours
46% >21 hr/week
29%
31%
40%
Emotional Stress
low moderate high
71% Moderate/High Stress
BackgroundCaregiving: 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
BackgroundOutcomes
Caregiver psychological health and symptoms were significantly higher compared to age, gender, ethnicity matched non-caregivers
Anxiety Depression Fatigue Sleep Disturbance0
10
20
30
40
50
60p < 0.0001
Caregivers n=21
Normal Volunteers n=20
p < 0.0001
p < 0.0001
p < 0.0001
Caregiver Outcomes Distress, Sleep Quality and Fatigue
Bevans et al., Biology of Blood and Marrow Transplantation.2010
BackgroundCancer Caregiving – Benefit Finding
Benefit Finding
• Acceptance• Empathy • Appreciation• Family• Positive Self-view• Reprioritization
Kim et al., Psychosomatic Medicine. 2007
Psychological Adjustment
• Positive• Negative• Positive• Positive• Positive • Negative
Caregiver IllnessPhysiological
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. womenCaregiving 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 PatientProfound ↑ 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 behaviorsPositive and negative behavioral changes for cancer caregivers
Ross A, Cancer Nursing. 2012
Caregiver OutcomesTranslation to Practice
Each Encounter is an Opportunity
Inform
Screen
Intervene
Follow-up
•Educate
•Screen•Formal approach to screening•Selection and administration of a questionnaire
•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 and Re-evaluation
Caregiver Resourceshttp://www.cc.nih.gov/wecare/index.html
AcknowledgmentsNursing DepartmentClare Hastings, RN, PhD, FAANGwenyth Wallen, RN, PhD
Nursing Colleagues Leslie Wehrlen, RN,BSNLadan Foruraghi, CRNPSharon Flynn, RN, CRNPNonniekaye Shelburne, CRNPAlyson Ross, PhD, RN
Research SupportStephen Klagholz, BS
Social WorkPatricia Prince, MEd, LICSW
Physician CollaboratorsJohn Barrett, MD
Richard Childs, MD Alan Remaley, MD
Karel Pacak, MDSteven Soldin, MD
Robert Shamburek, MD
StatisticianKaren Soeken, PhD
Li Yang, MS
Laboratory StaffRob Reger
Thanh Huynh
CollaboratorsMatthew Loscalzo, MSW
James Zabora, ScD
Nursing StaffTransplant TeamsResearch Subjects