1. 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

2. Disclosure I have no financial, organizational or policy conflicts to disclose with this presentation.

3. “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

4. 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

5. Background Stress in Caregivers Adapted from Vitaliano, P.P., Zhang, J., Scanlan, J. Psychological Bulletin. 2003 Physiologic variables Psychological Health Behaviors Illness Vulnerability/ Resources Demographics Personality Patient Clinical Factors StressorStress Reaction

6. “ caregivers are more likely to die ”

7. 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

8. 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

9. 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

10. Burden significantly higher for Cancer Caregivers Background Caregiver Burden in Cancer Care Caregiving in the U.S., 2009; www.caregiving.org 3 % frequency

11. Background Caregiver Burden in Cancer Care Caregiving in the U.S., 2009; www.caregiving.org 46% >21 hr/week 71% Moderate/High Stress

12. 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

13. Background Outcomes Caregiver psychological health and symptoms were significantly higher compared to age, gender, ethnicity matched non-caregivers p < 0.0001 Caregivers n=21 Normal Volunteers n=20 p < 0.0001

14. Table 3. Significant Relationships Between Sleep Quality, Fatigue, and Distress Scores Caregiver Outcomes Distress, Sleep Quality and Fatigue Bevans et al., Biology of Blood and Marrow Transplantation.2010

15. Background Cancer Caregiving – Benefit Finding Benefit Finding Acceptance Empathy Appreciation Family Positive Self-view Reprioritization Kim et al., Psychosomatic Medicine. 2007 Psychological Adjustment Positive Negative Positive Negative

17. 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

18. Caregiver Outcomes Translation 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

19. Caregiver Resources http://www.cc.nih.gov/wecare/index.html

20. Acknowledgments Nursing Department Clare Hastings, RN, PhD, FAAN Gwenyth Wallen, RN, PhD Nursing Colleagues Leslie Wehrlen, RN,BSN Ladan Foruraghi, CRNP Sharon Flynn, RN, CRNP Nonniekaye Shelburne, CRNP Alyson Ross, PhD, RN Research Support Stephen Klagholz, BS Social Work Patricia Prince, MEd, LICSW Physician Collaborators John Barrett, MD Richard Childs, MD Alan Remaley, MD Karel Pacak, MD Steven Soldin, MD Robert Shamburek, MD Statistician Karen Soeken, PhD Li Yang, MS Laboratory Staff Rob Reger Thanh Huynh Collaborators Matthew Loscalzo, MSW James Zabora, ScD Nursing Staff Transplant Teams Research Subjects