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