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Predictors of cancer caregiver depression symptomatology

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Title:
Predictors of cancer caregiver depression symptomatology
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English
Creator:
Rivera, Henry R
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University of South Florida
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Tampa, Fla
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Subjects

Subjects / Keywords:
End of life
Hospice
Symptom distress
Quality of life
Support
Dissertations, Academic -- Nursing -- Doctoral -- USF   ( lcsh )
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non-fiction   ( marcgt )

Notes

Abstract:
ABSTRACT: While the duration of the cancer illness may be shorter than that of other serious diseases, such as Alzheimer's disease, cancer caregivers provide many more hours of care during a week. Research directed at the intensive experience of caregiving of hospice cancer patients is needed as there is limited research of predictors of hospice cancer caregiver depression symptomatology. The purpose of the study was to examine predictors of depression symptomatology in caregivers of hospice cancer patients. A secondary analysis was conducted using baseline assessment data of patients and caregivers from a larger study of patient/caregiver dyads from two large hospices (NIH 5R01 NR 008252). Statistical methods included Pearson's, point bi-serial, and phi correlation. Multiple regression and logistic regression were used to examine prediction. The variables of wife caregiver, patient symptom global distress, and caregiver support satisfaction accounted for 13% of the variance in caregiver depression symptomatology as measured by the CES-D 10 (M = 2.97, SD = 2.15) in the patient/caregiver dyad sample (n = 578). Approximately 38% of the 578 caregivers had CES-D 10 scores of 4 or greater upon patient admission to hospice. CES-D 10 scores 4 or greater have been found predictive for a diagnosis of depression (Irwin, Artin and Oxman, 1999). Examining odd ratios, wife caregiver was positively predictive and caregiver support satisfaction was negatively predictive of CES-D 10 scores of 4 or greater. The results support the need for depression symptom screening of caregivers, the importance of support satisfaction and the need to examine additional caregiver factors, along with patient factors, that may contribute to depression symptomatology in caregivers of hospice cancer patients.
Thesis:
Dissertation (Ph.D.)--University of South Florida, 2009.
Bibliography:
Includes bibliographical references.
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by Henry R. Rivera.
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Title from PDF of title page.
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Document formatted into pages; contains 63 pages.
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Includes vita.

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University of South Florida
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aleph - 002028836
oclc - 436453002
usfldc doi - E14-SFE0002815
usfldc handle - e14.2815
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Predictors of Cancer Caregiver Depression Symptomatology By Henry R. Rivera, Jr. A dissertation submitted in partial fulfillment of the requirements for the degree of Doctor of Philosophy College of Nursing University of South Florida Major Professor: Susan C. McMillan, Ph.D. Versie Johnson Mallard, Ph.D. Lois O. Gonzalez, Ph.D. Brent J. Small, Ph.D. Date of Approval: March 24 2009 Keywords: end of life, hospice symptom distress quality of life, support 2009 Henry R. Rivera, Jr.

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Dedication I dedicate this dissertation to my partner, William D. Corbin and my p arents, Henry R. Rivera and Katherine A. Camier Rivera.

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Acknowledgments I express my appreciation to the members of my dissertation committee. I thank Dr. Susan C. McMilla n, Committee Chair, for her encouragement, generosity, unwavering support, advice, kindness and understanding throughout my academic endeavors at the College of Nursing at the University of South Florida. I thank Dr. Lois O. Gonzalez, Dr Versie Mallard J ohnson and Dr. Brent Small for their advice, comments and support during this process. I thank Dr Janine Overcash for the experience of working with her on studies and co authoring manuscripts. The experience was insightful, invaluable and c ontributed to my growth as a new researcher. I thank Rod Hale of the Graduate School for his encouragement and support.

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i Table of Contents List of Tables ................................ ................................ ................................ ................ iv List of Figures ................................ ................................ ................................ ................. v Abstract ......... ................................ ................................ ................................ ................ vi Chapter One Introduction ................................ ................................ ................................ 1 Problem Statement ................................ ................................ ............................... 2 Definition of Conce pts ................................ ................................ ......................... 3 Caregiver ................................ ................................ ................................ .. 3 Depression Symptomatology ................................ ................................ .... 3 Significance of the Study ................................ ................................ ..................... 4 Chapter Two Review of the Literature ................................ ................................ ............. 8 Depression Symptoms in Caregivers of Dementia Patients ................................ ... 8 Patient Behavioral Problems and Depression Symptoms ........................... 9 Patient Functional St atus ................................ ................................ ........ 10 Caregiver Health Status, Gender and Relationship to Patient .................. 10 Caregiver History of Depression ................................ ............................. 11 Caregiver Attitude, Health, Sense of Coherence, Coping and Neuroticism ................................ ................................ ............................ 12 Caregiver Mastery and Burden ................................ ............................... 13 Caregiver Social Support ................................ ................................ ........ 13 Caregiver Ethnicity ................................ ................................ ................. 14 Caregiver Age ................................ ................................ ........................ 14 Depression Symptoms in Caregivers of Cancer Patients ................................ ..... 15 Patient Functional Status ................................ ................................ ........ 16 Patient Symptom Distress and Cancer Diagnosis ................................ .... 16 Patient Quality of Life and Depressive Symptoms ................................ .. 17 Caregiver Social Su pport ................................ ................................ ........ 17 Caregiver Relationship to Patient, Sense of Coherence and Burden ....... 18 Caregiver Health Status, Sleep Disturbance, and Gender ........................ 18 Caregiver Mastery and Neuroticism ................................ ........................ 19 Theoretical Framework ................................ ................................ ...................... 19 Model ................................ ................................ ................................ ............... 19 Research Question and Hypotheses ................................ ................................ .... 23 Ques tio n ........ ................................ ................................ ........................ 23 Hypothesis 1 ................................ ................................ ........................ 23

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ii Hy pothesis 2 ................................ ................................ ........................ 2 3 Hypothesis 3 ................................ ................................ ........................ 23 Chapter Three Methods ........ ................................ ................................ ........................ 2 4 Institutional Approval ................................ ................................ ........................ 24 Design ........... .......... ................................ ................................ ........................ 24 Instruments .... .......... ................................ ................................ ........................ 2 5 Caregiver Variables ................................ ................................ ................ 2 5 Gender, Ethnicity, Age and Relationship to Patient ..................... 2 5 Health Status ................................ ................................ ............... 2 5 Social Support ................................ ................................ ............. 2 6 Patient Variables ................................ ................................ .................... 2 6 Cancer Diagnosis ................................ ................................ ........ 26 Symptom Distress ................................ ................................ ....... 26 Functional Status ................................ ................................ ........ 27 Activities of Daily Living Index (ADLI) .......................... 27 Palliative Performance Scale (PPS) ................................ 2 7 Depression Symptoms. Quality of Life ................................ ................................ ............ 29 Caregiver Dependent Variable ................................ ................................ 30 Depression Sympto ms Data Analysi s Procedures ................................ ................................ ................... 30 Chapter Four Results .......... ................................ ................................ ........................ 3 1 Preliminary Analysis ................................ ................................ ........................ 31 Descriptive Statistics ................................ ................................ ........................ 31 Sample Characteristics ................................ ................................ ............ 31 Patient Variables ................................ ................................ .................... 31 Cancer Diagnosis ................................ ................................ ........ 31 Symptom Distress ................................ ................................ ....... 32 Functional Status ................................ ................................ ........ 33 Depression Sympto ms 3 Quality of Life ................................ ................................ ............ 34 Caregiver Variables ................................ ................................ ................ 34 Gender ................................ ................................ ........................ 34 Ethnicity ................................ ................................ ..................... 34 Relationship to Patient ................................ ................................ 35 Age ................................ ................................ ........................ 35 Health Status ................................ ................................ ............... 35 Social Support ................................ ................................ ............. 35 Depression Symptoms 35 Summary ....... ........... .......... ................................ ................................ ........................ 36 Multiple Regression ... .......... ................................ ................................ ........................ 36 Correlation with Caregiver Depression Symptoms ................................ ............. 36 Multiple Regression Analysis ................................ ................................ ............. 37

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iii Logistic Regression ... .......... ................................ ................................ ........................ 39 Correlation with Caregiver Depression Symptom Score s of 4 or Greater ............ 40 Logi stic Regression Analysis ................................ ................................ ............. 4 0 Chapter Five Discussion ....... ................................ ................................ ........................ 42 Research Question ... ................................ ................................ ........................ 42 Hypotheses 1 .. .......... ................................ ................................ ........................ 4 3 Patient Variables ................................ ................................ .................... 4 3 Cancer Diagnoses and Symptom Distress ................................ .... 43 F unctional Status, Depression Symptoms, and Quality of Life .... 4 4 43 Caregiver Varia bles ................................ ................................ ................ 4 4 Caregiver Gender and Relationship to Patient ............................. 4 4 Age and Ethnicity ................................ ................................ ....... 4 5 Health Status and Support ................................ ........................... 4 6 Hypothesis 2 .. .......... ................................ ................................ ........................ 4 6 Hypothesis 3 .. .......... ................................ ................................ ........................ 4 6 Regression Summary ................................ ................................ ........................ 47 Limitations of the Study ................................ ................................ ..................... 47 Implications for Nursing ................................ ................................ .................... 49 Nurses and Nurse Pr actitioners ................................ ............................... 49 Nursing Colleges and Universities ................................ .......................... 51 Health Care Policy ................................ ................................ .................. 51 Hospice ......... ................................ ................................ ........................ 51 Recommendations for Future Study ................................ ................................ ... 52 References ..... .......... ................................ ................................ ........................ 5 3 About the Author ....... .......... ................................ ................................ ............. End Page

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iv List of Tables Table 1 Demographic Characteristics ................................ ................................ .. 3 2 Table 2 Patient Sy mptom Frequency and Percent with Mean and Standard Deviation of Symptom Distress ................................ ................ 33 Table 3 Quality of Life Question Mean and Standard Deviation .......................... 3 4 Table 4 Patient and Caregiver Variable Intercorrelations 3 7 Table 5 Wife Caregiver Patient Symptom Global Distress, and Caregiver Support Satisfaction as Predictors of Caregiver Depression S ymptoms 39 Table 6 Wife Caregiver, Caregiver Social Support Satisfaction and D epressi on Intercorrelations 40 Table 7 Wife Caregiver and Patient Support Satisfaction as Predictors of Caregiver Depression Symptom Score of 4 or Greater 4 1

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v List of Figures Figure 1 McM Modified Emanuel and Emanuel (1998) Model for a Peaceful Death ................................ ................................ .... 2 0 Figure 2 Prediction of Caregiver Depression Symptomatology fr om Modified Emanuel and Emanuel (1998) Model for a Peaceful Death ................................ ................................ ....................... 21 Figure 3 Prediction of Care giver Depression Symptomatology without Caregiver History of Depression, Mastery, Burden, Coping, Attitude, Sense of Coherence and Neuroticism ................................ ....... 22

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vi Predictors of Cancer Caregiver Depression Symptomatology Henry R. Rive ra, Jr. ABSTRACT While the duration of the cancer illness may be shorter than that of other serious care during a week. Research directed at the intensive experience of caregiving of hospice cancer patients is needed as there is limited research of predictors of hospice cancer caregiver depression symptomatology. T he purpose of the study was to examine predictors of depression s ymptomatology in caregivers of hospice can cer patients. A secondary analysis was conducted using b aseline assessment data of patients and caregivers from a larger study of patient/caregiver dyads from two large hospices (NIH 5R01 NR 008252) Statistical methods included bi seria l and phi correlation. M ultiple regression and logistic regression were used to examine prediction. The variables of wife caregiver, patient symptom global distress, and caregiver support satisfaction accounted for 13 % of the variance in caregiver depre ssion symptomatology as measured by the CES D 10 (M = 2.9 7 SD = 2.1 5 ) i n the patient/caregiver dyad sample (n = 578 ). A pproximately 38% of the 57 8 caregivers had CES D 10 scores of 4 or greater upon patient admission to hospice. CES D 10 s core s 4 or greater have been found predictive for a diagnosis of depression (Irwin, Artin and Oxman, 1999). Examining odd ratios, wife caregiver was positively predictive and caregiver support

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vii satisfaction was negatively predictive of C ES D 10 score s of 4 or greater T he results support the need for depression symptom screening of caregivers, the importance of support satisfaction and the need to examine additional caregiver factors, along with patient factors, that may contribute to depression symptomatology in car egivers of hospice cancer patients.

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1 CHAPTER ONE INTRODUCTION Chronically ill and end of life patients are increasingly being cared for in the home by family, friends, or neighbors These individuals are referred to as informal or voluntary caregi vers. T hey are not professionally trained for the caregiving role and are not financially compensated More than 44 million individuals in the United States each year are voluntary primary caregivers for a chronically ill, disabled or aged family member or friend, with the value of their services estimated at 306 billion dollars each year (Administration on Aging, 200 8 ). While the duration of the cancer illness may be shorter than that of other serious diseases, such as dementia, caregivers of cancer pa tients provide many more hours of care during a week (Haley, Lamonde, Han, Narramore, & Schonwetter, 2001 ). Caregivers for end of life patients are subjected to an intense caregiving experience for which they may not have been adequ ately prepared or expec ted. Identifying caregivers at risk for depression symptomatology is particularly important in this patient population This is necessary not only for the physical and emotional health of the caregiver but also that of the cancer patient whose quality o f life and care may be adversely affected Quality of care and life is particularly critical for patients at the end of life. While research has found a relationship between caregiving and depression, a search of the literature revealed that studies of p redictors of depression symptoms in caregivers of cancer patients at the end of life are sparse. A small study of 51 caregivers

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2 of patients with advanced cancer recruited from ambulatory clinics focused on caregiver sleep as a predictor of caregiver dep ression symptoms (Carter & Chang, 2000). There are also limited studies of caregivers of cancer p atients in the hospice setting. A study comparing dementia and cancer caregivers of hospice patients had a small sample size and was limited to only sp ousal caregivers (Haley et al., 2001 ). Further research directed at the intensive experience of caregiving of hospice cancer patients and caregiver depression symptomatology is needed, due to limited research on this particular caregiving experience There is a need to assess caregivers for depression symptoms and p rovide appropriate intervention. The identification of cancer caregiver depression symptomatology can be used to improve the psychological and mental health of informal caregivers, improve their qua lity of life and ensure quality care for those in need Problem Statement The majority of studies of predictors of depression symptoms in caregivers of patie nts at the end of life were not of caregivers of hospice cancer patients Many of the patient and caregiver factors that influence depression symptoms in caregivers of A isease and dementia caregivers may also be factors for depressive symptoms in caregivers of cancer patients The duration of caregiving for cancer patients however, ma y be shorter than that for d isease caregivers but more intense (Haley et al., 2001). Further research directed at the intensive experience of caregiving of hospice cancer patients and caregiver depression symptomatology is needed T here is al so limited research of predictors of caregiver depression symptoms in hospice cancer caregivers The purpose of this study was to examine caregiver and

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3 patient factors contributing to caregiver depression symptomatology and the level of depression symptom atology in caregivers of hospice cancer patients Definition of Concepts The concept of caregiver depression has not been fully defined in the literature so each word in the concept must be defined separately. Caregiver Caregiver is defined (Thomas, 1997 C aregiver is further defined for this dissertation as an informal or voluntary individual who is not professionally trained or financially compensated to render care and wh o provides at least four hours of care a day Depression Symptomatology Depression is defined 512) The presence of at least four of the following symptoms over a two week period, with one of the symptoms required to be either of the first two listed, may indicate depression: 1) depressed mood chara cterized by feelings of sadness or emptiness ; 2) l oss of interest or pleasure in usual activities ; 3) s uicidal thinking or attempts ; 4) m otor retardat ion or agitation ; 5) d isturbed sleep ; 6) f atigue and loss of energy ; 7) f eelings of worthlessness or excessive guilt ; 8) d ifficulty thinking or concentrating ; or 9) c hanges in appetite and weight (American Psychiatric Association [APA], 2000 ) Various in struments with acceptable evidence of reliability and validity have been used to measure caregiver depressive symptomology (Beck & Beck, 1972; Radloff, 1977; Sheikh & Yesavage, 1986 ) Symptoms of depression are used to make clinical dia gnoses of depression For example, depression symptoms may be further classified as

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4 a major depressive episode or a minor depressive episode, with the classification determined by presence, the number and duration of symptoms (APA, 2000, April). Significa nce of the Study Depression symptomatology in caregivers has been described as a specific emotional reaction to the stress of caregiving (Sherwood et al. 2004). Recent studies have found 32 to 50 percent of caregivers had depressive symptoms at a level s uggesting depression (Covinsky et al., 2003; Butler, Turner, Kaye, Ruffin, & Downey, 2005). Caregiving is known to have physical and emotional effects on the caregiver (Vitaliano et al., 2002 ; Sherwood et al. 2004; Ferketich, Schwartzbaum, Frid, & Moeschb erger, 2000). A n early study comparing four year mortality of spousal caregivers of individuals with physical problems or mental confusion found a 63% higher mortality rate in caregivers (Schulz & Beach, 1999). Caregiving has significant negative effect on cells of the immune system including T cells and natural killer cells ( Pariante et al., 1997; Scanlan, Vitaliano, Zhang, Savage, & Ochs, 2001; Vitaliano et al., 1998). In addition to effects at the cellular level, caregivers have increased levels of c oronary heart disease (CHD) and metabolic syndrome when compared to noncaregivers (Vitaliano et al). Caregiving has known physiologic effects and the frequently accompanying depression can contribute to additional physical effects. The association betwe en high levels of depression and poor physical health has been clearly established (Ferketich et al.; Schulz & Beach, 1999; Vitaliano et al., 2002). Depression in women has been associated with a higher risk for nonfatal CHD and mortality compared to only nonfatal CHD in men ( Ferketich, 2000 ). T he physical effects of depression compound the other

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5 deleterious effects of caregiving, particularly for those with existing physical problem s An early study of a large sample of men and women found a higher depr ession symptom score associ ated with myocardial infarction. The findings were unchanged after controlling for risk factors and signs of disease at baseline and there were no gender differences in effect sizes (Barefoot & Schroll, 1996). A recent large lo ngitudinal study of only women, found depressive symptoms in women without baseline CHD associated with CHD mortality (Whang et al., 2009) D epressive symptoms may include among others, fatigue, insomnia, excessive sleep, indecisiveness and inability to concentrate ( APA, 2000). Consequently, such distress may result in the caregiver being unable to meet the caregiving needs of a multi symptomatic cancer patient. Moreover, t he physical, emotional and mental energy of the caregiving experience may overwh elm a depressed caregiver (Scanlan et al., 2001; Shultz & Beach, 1999 ). Early researchers have suggested that caregiver depression symptoms may result eventual deat h of the patient The c aregiver anticipatory grief, however, does not rule out symptoms of depression (Lindemann, 1994; Walker & Pomeroy, 1996) Caregivers experiencing symptoms of depression are at higher risk for chronic depression foll owing the death of the patient (Robinson Whelen, Tada, MacCallum, McGuire, & Kiecolt Glaser, 2001). Assessing individuals for depressive symptoms may help to identify individuals who are experiencing a dysfunctional grief pattern that may lead to higher l evels of depression (Grassi, 2007). While anticipatory grieving may be contributory to caregiver depression symptoms, the identification of caregivers

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6 experiencing depressive symptoms is important not only to offer further evaluation, but also to help des ign appropriate interventions (Haley et al., 2001). Identifying caregiver depression symptomatology may lead to the identific ation of patient depression, as depression in one has been found to correlate with depression in the other (Bambauer et al., 2006; Fleming et al., 2006; Land et al. 2003). The potential for caregiver morbidity and mortality may have significant effects not only on the caregiver, but also on the quality of the care the patient receives. A longitudinal study of caregivers found care giver depression symptoms predictive of the decision to terminate home care for the elderly and initiate placement in a nursing facility, increasing cost and removing the patient from friends, family and a familiar environment (Arai, 2001) The identifica tion of symptoms of caregiver depression is therefore important to relieve suffering during and after the caregiver experience for the caregiver and to maintain quality of life and care for the patient. Depression is highly treatable with most people exp eriencing relief of symptoms and the ability to return to their daily routines. Identifying hospice caregivers of cancer patients experiencing symptoms of depression is also important to provide for screening and early intervention. Early treatment is mo re effective and increases the probability of preventing recurrence (National Alliance on Mental Illness, 2006; National Institute for Mental Health, 2008). While multidisciplinary support interventions, including support groups, have been developed and a re often used by cancer patients, those available to caregivers have not been developed at the same pace (McCorkle & Pasacreta, 2001; Northouse & Peters Golden, 1993). I nformation supporting the effectiveness of

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7 interventions for cancer caregivers is limi ted and more research is needed in order to predict those caregivers at risk (McCorkle & Pasacreta). As previously fatal disease s, such as cancer, HIV and heart disease become more chronic, many individuals will require caregivers. The need will be mag nified as the number of individuals over 65 increase and the mortality rate decrease s The negative effects of caregiving, including depression, may dissuade individuals from voluntarily caring for others. Unless there are willing informal caregivers, th e health care system cannot financially and structural ly support the needs of the increasing number of patients

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8 CHAPTER TWO REVIEW OF THE LITERATURE To examine factors contributing to caregiver depression, a review of t he literature was conducted using MEDLINE (Ovid), PubMed and CINAHL search engines using d isease and limiting studies to informal, voluntary caregivers. Stud ies i ncluded were limited to English. Depression Symptoms in Caregivers of Dementia Patients The earliest studies of caregiving were conducted with caregivers of patients with dementia and there is a considerable amount of published research. The most common forms of the many types of dementia are (AD) and vascular d ementia ( Kukull & Ganguli, 2000 ; Roman 2001). Caregiving regardless of the disease, is known to have physical and emotional effects on the caregiver includin g higher mortality ( Ferketich et al. 2000 ; Schulz & Beach, 1999 ; Sherwood et al. 2004; Vitaliano et al., 2002 ). Caregivers have increased levels of coronary heart disease (CHD), metabolic syndrome and negative effects on cells of the immune system when c ompare d t o noncaregivers ( Scanlan et al. 2001 ; Vitaliano et al., 1998 ; Vitaliano et al., 2002 ). There are also psychological effects of caregiving. Depression in caregivers has been described as a specific emotional reaction to the stress of caregiving with studies finding 32 to 50 percent of caregivers having depressive symptoms at a level suggesting

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9 depression ( Butler et al., 2005 ; Covinsky et al., 2003 ; Sherwood et al. 2004 ) Self reported rates of depression in caregivers of dementia patients have ranged from 30% to 83% ( Buckwalter et al., 1999; Eisdorfer et al., 2003 ). Depression symptoms have been associated with physical effect s on the caregiver including decline in immunity and immune response and sleep disturbance ( Castle, Wilkins, Heck, Tanz y, & Fahey, 1995 ; Kochar, Fredman, Stone, & Cauley, 2007 ; Pariante et al., 1997; Scanlan et al. 2001; Vitaliano et al., 1998). Depression symptoms in caregivers also may negatively affect the care the patient receives (Thorpe et al., 2006). Physical an d psychological fact ors may contribute to symptoms of depression in caregivers. Some factors are related to only the caregiver, while others are related to only the patient. These factors may also be related both the caregiver and patient. Patient Beha vioral Problems and Depression Symptoms B ehavioral problems, memory problems, and depression of AD patients have been associated with caregiver depression symptomatology and fatigue ( Clark, 2002 ; Teri 1997 ; Victoroff, Mack, & Nielson, 1998 ) Caregiver s leep disturbance resulting from AD patient behavior problems has also been correlated to increased caregiver depression symptoms (Creese, Bedard, Brazil, & Chambers, 2008) Depression symptoms in patients have bee n correlated with symptoms of depressio n in caregivers (Bambauer et al., 2006; Fleming et al., 2006; Land et al., 2003). When patients met criteria for any psychiatric diagnosis, their caregivers were 7.9 times as likely to meet the criteria for any psychiatric diagnosis and vice versa (Bambaue r et al.).

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10 Patient Functional Status C aregivers of terminally ill patients with high care needs, including transportation, nursing, homemaking and personal care have higher depressive symptoms (Emanuel, Fairclough, Slutsman, & Emanuel, 2000) S pousal increased negative appraisal of cancer or dementia care has also been found predictive of caregiver depression symptoms (Haley, LaMonde, Han, Burton, & Schonwetter, 2003). Caregivers with no previous symptoms of depre ssion are more likely to have depressive symptoms as the patient need for assistance with ADL increased (Neundorfer, 2006). Caregiver Health Status, Gender and Relationship to Patient A c aregiver health status has been asso ciated with caregiver depre ssion symptoms with c aregivers reporting caregiving strain more likely to have lower levels of perceived health, greater depression symptoms less rest, lower likelihood to rest when ill less time to engage in exercise and higher incidence of (CHD) than noncaregivers (Schultz et al., 1997 ; Vitaliano et al., 2002 ). The elevated i ncidence of metabolic syndrome significantly ex plained CHD prevalence in male and female caregivers ( Vitaliano et al ). In contrast, c aregivers who report better health have lowe r levels of depressive symptoms (Haley et al. 2003). There are gender differences in depression symptomatology with female caregivers including spousal caregivers, having significantly h igher level s of depression symptoms than male caregivers ( Beeson, 20 03 ; Covinsky et al., 2003; Haley et al ., 2003; Thompson et al., 2004) Women have been reported to have higher rates of depression symptoms more likely to be socially isolated and have almost twice the rate of probable

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11 major depression (Adams Aranda, K emp, & Takagi, 2002; Cossette, Levesque, & Laurin, 1995; Gallicchio, Siddiqi, Langenberg, & Baumgarten, 2002 ; Mui, 1995 ) M ale caregiver s may also have h igher rates of depression symptoms with male gender being the most significant correlate of depressio n symptomatology (Siegel, Karus, Raveis, Christ, & Mesagno, 1996). M ale spousal caregivers of AD patients have had depression symptoms scores significant for a diagnosis of depression ( Shanks McElroy & Strobino, 2001). The relationship of spousal caregiv er has been found predictive of depression symptoms and the relationship of wife and daughter associated with higher depression symptom rates (Zanetti et al., 1998 ; Covinsky et al. 2003 ). While the studies differ, spousal caregivers, both male and female appear to be at risk for depression symptoms. Caregiver History of Depression I n dividuals who have had a history of depression may be more likely to experience depression symptoms when assuming the role of caregiver. C aregivers of AD patients with a pa st depressive anxiety disorder had a higher rate of symptoms of depression than those without a past history of those disorders (Russo, Vitaliano, Brewer, Katon, & Becker, 1995). AD patient caregiver s with a prior history of depressive symptoms have al so been found to have fewer d epressive symptoms while caregiving (Neundorfer et al ., 2006 ). However, ADL dependency resulted in more depressive symptoms in caregivers without a prior history of depression and in caregivers with a history of mild depressiv e symptoms, supporting early studies of the effect of ADL dependency on the psychological health of caregivers discussed earlier (Emanue l et al. 2000 ; Given et al., 1993 ; Haley et al. 2003; Neundorfer et al. )

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12 Caregiver Attitude, Health, Sense of Coherenc e, Coping, and N euroticism Negative caregiver mood has been related to poor health and depression symptomatology ( Billings, Folkman, Acree, & Moskowitz, 2000 ; Lyons, Stewart, Archbold, Carter, & Perrin, 2004) C aregivers with higher optimism were found t o have significan tly lower levels of depression symptoms while those with higher pessimism had significantly higher levels of depressive symptoms and poor physical health, with a faster decline in health (Lyons et al.) The higher levels of depression sym ptoms and poor physical health also confirm other studies linking depression symptomatology with poor health (Ferketich et al. 2000; Schulz & Beach, 1999; Vitaliano et al., 2002). Caregivers who evaluated caregiving as less stressful and had greater perce ived benefits of caregiving had less depressive symptoms (Haley et al., 2003) measured using the Sense of Coherence scale (Antonovsky, 1993). Male caregivers with signi ficantly higher sense of coherence scores had lower levels of depression symptoms (Thompson et al. 2004). Coping styles may influence depressive symptoms, with approach coping associated with lower levels of depression symptoms and avoidance coping with h igher levels of depression symptoms (Haley et al., 1996). Emotion focused coping strategies were found to mediate anxiety levels in AD caregivers but not depressive symptoms (Cooper, Katona, Orrell, & Livingston, 2008). A psycho educational skill interve ntion reduced caregiver burden from patient symptoms and caregiving tasks, and increased overall quality of life. However, the study did not assess depression specifically (McMillan et al., 2006). Caregiver neuroticism, the tendency to focus on the negat ive aspect of caregiving, has also been associated with higher levels of

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13 depression symptoms in a studies of dementia spousal caregivers (Gallant & Connell, 2003; Jang, Clay, Roth, Haley, & Mittelman, 2004). Caregiver Mastery and Burden tion of their competency in providing patient care is referred to as mastery (Kurt et al., 2005 ). C aregivers with high mastery have lower levels of depression symptom at ology with lower scores on mastery predictive of high er levels of depression symptomat o logy over time (Nijboer, Tempelaar, Triemstra, Van Den Bos, & Sanderman, 2001) I ncreased mastery has been directly associated with lower depressive symptoms (Mausbach et al., 2007) Caregiver burden includes factors such as feelings of stress of tasks meeting responsibilities and finances as well as a perceived decline in health (Bedard et al., 2001 ; Bedard, Pedlar, Martin, Malott, & Stones, 2000 ) C aregiver burden is highly correlated with caregiver depression symptoms with c aregiver depression sy mptomatology predictive of caregiver burden ( Butler et al., 2005; Lim, Sahadevan, Choo, & Anthony, 1999) Younger caregivers are more burdened than older caregivers (Brody, Litvin, Hoffman, & Kleban, 1995; Chang, Brecht, & Carter, 2001; Levesque, Ducharme & Lachance, 1999). However it is not possible to compare caregiver burden in non caregivers to determine the clinical significance of burden (Weitzner, Haley, & Chen, 2000) Caregiver Social Support C aregivers of patients with AD and other dementias wi th lower social support had increased depression symptoms while those with higher levels of support had fewer symptoms (Chang, et al., 2001; Grant et al., 2006 ; Haley et al. 2003; Williams, 2005).

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14 Caregiver Ethnicity Several studies have reported differ ing rates of caregiver depression symptoms in various race and ethnic groups Caucasians caregivers have been found to have more depression symptoms than African Americans caregivers (Williams, 2005). Coping and social network resources may have been respo nsible for the fewer depression symptoms in African American caregivers (Williams). However no difference in Caucasian and Hispanic/Latina AD caregiver symptoms of depression has also been found (Coon et al., 2004). Anglo American, African American and J apanese American dementia caregivers have reported depressive symptom rates of 66%, 57% and 78% respectively Mexican Americans had an 89% reported depression symptom rate clinically significant for a diagnosis of depression, of which 51% was probable maj or depression (Adams et al 2002). While these rate s are different, they indicate depressive symptom rate s are high for all caregiver ethnicities Caregiver Age Younger age has been associated with higher depression symptom levels in dementia caregiver s (Butler et al ., 2005 ; Sorensen & Pinquart, 2005). Middle aged caregivers may be caring for a parent while raising their own children with additional family and employment responsibilities (Butler et al.; Rogerson & Kim, 2005; Sorensen & Pinquart) Deme ntia caregivers older than 65 years have also been found to have depression symptom levels high enough to be classified as clinically depressed (Covinsky et al. (2003). However, caregiver age has not been found predictive of caregiver depression symptoms (Butler et al.)

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15 Depression Symptoms in Caregivers of Cancer Patients Cancer incidence increases with age, with 76% of all cancers diagnosed in individuals 55 or older (American Cancer Society, 200 8 ). Approximately 50% of hospice admissions are cancer pa tients ( Connor, Tecca, Lundperson, & Teno, 2004) T he emotional impact of a cancer diagnosis, coupled with a shift to outpatient treatment, has shifted the emotional and physical burden of care to caregivers outside the formal health care system (Given et al. 1993) Cancer patients are surviving longer with those receiving intensive therapies and those at the end of life requiring the assistance of informal caregivers. Most published caregiver studies focus on dementia caregivers, with few studies comp aring the impact of caregiving on dement ia and cancer patient caregivers ( Haley et al., 2001 ). An early study comparing family dementia caregivers with cancer caregivers showed both groups had double of the rates of psychological distress than the general population but little difference between groups (Rabins, Fitting, Eastham, & Fetting, 1990) A study of dementia and cancer patients, both in the middle stages of disease, found spousal dementia caregivers experience d more negative effects of caregiving than spousal cancer caregivers However the researchers acknowledged that the terminal phase of the cancer patients would be more stressful and further research dur ing the terminal phase should be conducted (Clipp & George, 1993 ). While the focus of res earch has been on caregivers of dementia patients, there is limited research on caregivers of hospice patients including those with cancer (Haley et al.). The p hysical, psychological and social factors associated with depression symptomatology in dementi a caregivers

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16 may also be associated with cancer caregivers. As with dementia caregivers, the factors may be related to the patient, caregiver or both. Patient Functional Status Dementia caregivers provide more help with Activities of Daily Living (ADL ) an d Instrume ntal Activities of Daily Living than cancer caregivers. D ementia caregivers are more likely to provide care in a nursing ho me than the cancer caregivers however both h ospice caregiver groups provide more than double the number of hours of care than caregivers of ambulatory dementia patients While dementia caregivers provide care for many more months, cancer caregivers provide many more hou rs of caregiving a week. (Haley et al. 2001). Cancer patient ADL dependency, t he extent to which a pati ent cannot perform essential activities of daily living, is correlated not only with increased patient depression symptoms, but also with caregiver depression symptoms (Given et al., 1993). Caregivers of terminally ill patients, including cancer, with hig h care needs including transportation, nursing, homemaking and personal care, had high depressive symptoms (Emanuel, Fairclough, Slutsman, & Emanuel, 2000). care is a predict or of caregiver depression symptoms ( Haley et al. 2003) Patient Symptom Distress and Cancer Diagnosis There are symptom differences between cancer patients and dementia patients While there were no significant differences in the occurrence of memory o r disruptive behaviors between both groups of patients, cancer patients had more depressive behavior and higher levels of pain, appetite loss and constipation while demen tia patients had more confusion (Haley et al ., 2001) Patient behavior problems were associated with higher

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17 caregiver depression symptomatology in both caregiver groups (Haley, et al., 2003). S ymptom distress in cancer patients has been corre lated with depression symptoms in their caregivers ( Given et al. 1993; Kurtz et al., 1995; Kurtz, Kurtz, Stommel, Given, & Given, 2001; Redeker, Lev, & Ruggiero, 2000 ; Bambauer et al., 2006; Fleming et al., 2006 ) Patient Quality of Life and Depressive Symptoms Patient symptom distress had been negatively correlated with patient quality of life (Mc Millan & Small, 2002). Patient quality of life may therefore impact caregiver depression. Specific cancer diagnosis may also be associated with higher caregiver depression symptoms S tudies of gastrointestina l and lung cancer patients have found signifi cant levels of caregiver depression symptoms ( Braun, Mikulincer, Rydall, Walsh, & Rodin, 2007 ; Haley et al., 2001 ) Depression symptom level in cancer patients has been correlated with caregiver depression symptom level (Fleming et al., 2006). When advan ced cancer patients met the criteria for any psychiatric diagnosis, their caregivers were 7.9 times as likely to meet the criteria for any psychiatric diagnosis and vice versa (Bambauer et al., 2006). Caregiver Social Support Greater satisfaction with so cial support was also associated with higher life satisfaction (Haley, et al. 2003) C ancer caregivers reporting a low level of social support have more depress ion symptoms over time than those who reported a high amount of social support (Nijboer et al. 2001). Other studies have also confirmed that a lack of perceived social support contributes to caregiver depression symptoms (Chang et al., 2001; Miller et al., 2001)

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18 Caregiver Relationship to Patient, Sense of Coherence and Burden O ver 50% of the h o spice spousal dementia caregivers and spousal cancer caregivers have been found to have clinically significant symptoms of depression and depression rates three times that of the general population. Women caregivers had more depressive symptoms and higher depressive levels than male caregivers. Both caregiver groups also had significantly lower life satisfaction and poorer physical health (Haley et al. 2001). Sense of coherence and caregiver burden have been associated with caregiver depression symptomol ogy in end life cancer patient caregivers (Grov, Fossa, Sorebo, & Dahl, 2006; Tzuh Tang & Li, 2008). Caregiver Health Status, Sleep Disturbance, and Gender Both cancer and dementia caregivers reporting better health have lower levels of depressive sympto ms and higher life satisfaction (Haley, et al., 2003). Lower health status in caregivers of end of life cancer patients in community settings, though not including hospice, has been associated with caregiver depression symptomology ( Doorenbos et al., 2007 ). Sleep problems in caregiver s of advanced cancer patients predicted 63.6% of caregiver depression symptoms (Carter & Chang, 2000). Regarding gender female caregivers ha ve been found to have higher level of depression symptomology than male caregivers (Covinsky et al., 2003; Haley et al., 2003; Thompson et al., 2004). Male caregivers have also been significantly associated with caregiver depression, suggesting both genders are at risk for depression symptomatology (Mystakidou, Tsilika, Parpa, Galanos, & Vlahos, 2007).

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19 Caregiver Mastery and Neuroticism Cancer caregivers with high mastery had lower levels of depression symptomology with lower scores on mastery predictive of higher levels of depression symptomology over time (Nijboer et al. 2001 ) C aregiver neuroticism has also been associated with caregiver depression symptomatology in cancer patients ( Carter & Acton, 2006; Kim, Duberstein, Sorensen, & Larson, 2005) Theoretical Framework The Framework of a Good Death (Emanuel & Emanuel 1998) mode l includes four components: 1) fixed characteristics of the patient (age, ethnicity); 2) modifiable interventions provided to patients, families, friends, healthcare providers and others, and 4) outcomes Emanuel, Alpert, Baldwin, and Emanuel (2000) assessed the validity and stability of the model over time, reporting good construct validity of the tested portion of the mode l with eight variables accounting for 46% of the va r The model was adapted to c larify the flow of the model from left to right include caregivers a nd include measurable outcomes The modified model served as the framework for the o riginal study (R01 NR008252) and this secondary analysis (Figure 1). This secondary analysis utilizes baseline data result ing from the original structured assessment Model The major factors from the literature associated with caregiver depressio n symptomatology were used to construct a model from the McMillan modified Emanuel and Emanuel (1998) M odel of a Peaceful Death to predict hospice cancer caregiver

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20 depression symptoms (Figure 2). Caregiver and patient fixed physical and psychosocial fac tors combine with caregiver and patient modifiable physical and psychosocial factors in predicting caregiver depression symptoms. health status, previous history of depressive symp toms, and a relationship to patient are immutable at the start of the caregiving experience. Modifiable f actors which may vary to influence caregiver depression symptoms either positively or negatively are : pression sym ptoms, and quality of life and the patient care, burden, coping skills, attitude and sense of coherence. Fixed and Mod ifiable Characteristics of the P atient/ Care S ystem Interventions Outcomes Caregiver Experience Fixed Characteristics Modifiable C haracteristics Figu re 1. McMi Modified Emanuel and Emanuel (1998) Model for a Peaceful D eath Clinical Status of Patients Functional status Cognitive status Socio demographic characteristics of patients and caregivers Physio logical symptoms of patient Social/spiritu al needs of pt/caregiver dyad IDT Physical, psychosocial and spiritual interventions Outcomes : Patient symptom distress, Pt QOL, Pt/CG depression, & spiritual well being Phys ical psychosocial and spiritual assessment Psychological symptoms of pt/ caregiver dyad Stud y Intervention: Enhanced and structured assessment data Long term Outcome: Caregiver depression

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21 Figure 2 Modified Emanuel and Emanuel (1998) Theoretical Model of a Peaceful Death The major factors associated with caregiver depression symptoms available from baseline assessment data from the original study were used to construct a model for the current study to predict hospice cancer caregiver depression symptoms (Figure 3). The available physical and psychosocial patient factors were cancer diagnosis, symptom distress functional status depression symptoms and quality of life The available caregiver physical and psychosocial factors were gender, ethnicity, age health status relationship to patien t and social support. Caregiver history of depression, mastery, Patien t Physical Factors Cance r Diagnosis Caregiver Physical Factors Gender Ethnicity Age Health Status Caregiver Psychosocial Factors History of Depress ion Symptoms Relationship t o P atient Patient P hysical and Psychosocial Factors Symptom Distress Functional Status Depression Symptoms Quality of Life Caregiver Psychosocial Factors Social Support Mastery Burden Coping Attitude Sense of Coherence Neuroticism Car egiver Depression Symptoms Fixed Characteristics Modifiable Characteristics Outcome

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22 burden, coping, attitude, sense of coherence, and neuroticism were not measured in the original study and are represented in the boxes with dotted lines Figure 3. Prediction of Caregiver Depression Symptomatology without Caregiver History of Depression, Mastery, Bur den, Coping, Attitude, Sense of Coherence and Neuroticism Patient Physical Factors Cancer Diagnosis Caregiver Physical Factors Gender Ethnicity Age Health Status Caregiver Psychosocial Factors Relationship to Patient Patient Physical and Psychosocial Factors Symptom Distress Functional Status Depression Symptoms Quality of Life Caregiver Psychosocial Factor s Social Support Caregiver Depression Symptom s Caregiver Psychosocial Factors History of Depressi on Symptoms Caregiver Psychosocial Factors Mastery Burden Coping Attitude Sense of Coherence Neuroticism Fixed Characteristics Modifiable Characteristics Outcome

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23 Research Question and Hypotheses The Prediction of Caregiver Depression Symptomatology fr Modified Emanuel and Emanuel (1998) Model of a Peaceful Death from the Systematic Assessm ent to Improve Hospice Outcomes Study (Figure 3) was used in this study to address the following : Question What is the level of depressive symptoms in hospice cancer caregivers? Hypothesis 1 The patient and caregiver factors in the model are correlated with caregiver depression symptomatology. Hypothesis 2 The patient and caregiver factors in the model are predictive of caregiver depression symptomatology. Hypothesis 3 The patient and caregiver factors in the model are predictive of caregiver depressi on symptom scores of 4 or greater

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24 CHAPTER THREE METHODS Chapter three presents the methodology used in this study. Included are the institutional approval, design model, instrumentation, and procedures. Institutional Approval T he original study (NIH 5R01 NR 008252 ), was approved by participating h ospices and USF Institutional Review Board for th e Protection of Human Subjects. This secondary analysis of non identifiable data w as determined by USF Institutional Review Board approval not to require additional approval. Design A secondary analysis of baseline data set from a current study analyzes available factors from a large sample of caregiver and patient dyads to examine pre dictors of depression symptoms in caregivers of hospice cancer patients. The study use d the data Systematic Assessment to Improve Hospice Outcomes (NIH 5R01 NR 008252). The study sample of patient/caregiver dyads was drawn fr om t wo large hospices that are partners in the Center for Hospice, Palliative Care and End of Life Studies at the University of South Florida Caregiver inclusion criteria was (1) at least 18 years old and (2) identified as a primary caregiver for a hospi ce cancer patient providing care for at least four hours a day. Caregivers were excluded if they were in active treatment for cancer. Patient inclusion criteria was (1) cancer diagnosis, (2) score of 8 or

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25 higher on the 10 point Short Portable Mental Stat us Questionnaire ( MacNeil & Lichtenberg,1999), score of 40 or higher on the Palliative Performance Scale ( Anderson, Downing, Hill, Casorso, & Lerch, 1996) and (4 ) able to read and write English. Patients were excluded if they were confused, excessively de bilitated, comatose or actively dying. P atients and caregivers w ho meet study criteria were approached within 24 72 hours of admission to hospice. Caregivers from multiple hospice teams with equivalent patient profiles were indentified and post hoc analy sis was conducted to ensure team equivalency. Instruments Caregiver Variables G ender, Ethnicity, A ge and Relationship to Patient Standard demographic information was collected from caregivers via self report in a semi structured interview Included wer e caregiver gender, ethnicity, age and relationship to the patient. Health Status The SF 12 is a short survey of 12 questions selected from the SF 36 Health Survey combined to create physical and mental function scales to assess physical and mental heal th Physical and Mental Health Composite Scores are calculated for the 12 combined and weighted questions using scoring algorithms, with scores ranging from 0 to 100, with 0 indicating the lowest level of health and 100 the highest level for both scales. The SF 12 developers reported strong test retest reliability for th e physical and mental correlation of 89 and .76 (n = 232) respectively V alidity of the physical component (r = .90) and mental component ( r = .93) with the original scale was high ( War e, Kosinski, & Keller,

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26 1996). A more recent study found the scale valid and reliable for use in older adults (Resnick & Nahm, 2001). Social Support Social support as perceived by caregivers was assessed using a subscales of an 18 item, multidimensional measure from the work of Krause and Borawski Clark (1995). The support satisfaction scales have been used in studies of hospice caregivers and older adults in the community ( Haley et al., 2003; Jang, Haley, Small, & Mortimer, 2002 ; Jang, Mortimer, Haley, C hisolm, & Graves, 2002) The self report summated rating scale has total scale scores ranging from 18 (lowest support) to 72 (highest support) with i tems 15 18 reverse scored. S upport satisfaction scales include physical support such as assistance with housework, shopping and transportation (3 items, = .72), emotional support such as interest, concern and comfort from others (4 items, = .83), and informational support, such as sharing information and similar experiences from others (4 items, = .77 ) The study used a three question physical, emotional and informational support satisfaction scale with a possible range of total scores of 1 to 12. Social support has been found to be predictive of depression in hospice caregivers ( Haley et al. ) Patie nt Variables Cancer Diagnosis Standard demographic information was collected from the patients via self report in a semi structured interview and patient record. Included was a cancer diagnosis Symptom Distress The Memorial Symptom Assessment Scale ( MSAS) was designed to assess symptoms associated with cancer by severity, frequency of occurrence and the distr ess it

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27 produces using 33 items. Items in the subscales of intensity and distress of occurring symptoms are scored from 0 to 4, with higher score s indicating more intense or distressing the symptom is for the patient The validity and reliability of the original instrument for the Total Prevalence, Psychological and Physical Subscales were strong (alpha = .83 .92) when used with individuals receiv ing active cancer therapy (Portenoy et al., 1994) A shortened version was used for the original study using 25 symptoms instead of the 33 found in the original MSAS, with symptoms linked to cancer therapy removed to decrease patient burden. The revised scale, used in an earlier study found correlation between MSAS distress scores and the Hospice Quality of Life Index scores were moderately strong and negative (r = .72; p<.001) providing further support for construct validity of the MSAS for use with en d of life cancer patients The reliability of the intensity and distress scores were good ( r = .73 .74) using coefficient alpha (McMillan & Small, 2002). In the current study, only the symptom distress subscale score was used as a measure of patient symp tom global distress Functional Status Activities of Daily Living Index (ADLI) The ADLI a ssesse s six activities of daily living; bathing, dressing, toileting, transfer, continence and feeding (Katz et al, 1963). The ADLI was used to interview patient s to their abilities to perform daily activities. The patient interview was conducted to relie ve the burden to patients and a llow for completion of the Palliative Performance Scale. Palliative Performance Scale (PPS) The PPS was used to assess the phys ical condition an d functional status of persons receiving palliative care. The instrument measures three broad areas: mobility, intake and level of consciousness in five categories

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28 (degree of ambulation; ability to do activities and extent of disease; abi lity to do self care; food/fluid int ake; and state of consciousness. The PPS is scored from 0 100% at 10% increments with higher scores refl ecting higher functional status. The developers of the scale assessed validity by comparing length of survival wit h the PPS score of 129 patients on admission to a hospice unit. The average time until death in days was 1.8 for scores of 10% 2.62 for 20%, 6.7 for 30%, 10.3 for 40 %, 13.87 and only 2 patients for 60 % or higher (Anderson et al, 1996) Reliability stati stics were not reported by the original developers of the scale H owever a recent study of 466 patients enrolled in hospice found PPS score was a strong independent predictor of mortality (p < 0.001) with six month mortality rates at 96% for scores 10 20, 89% for 30 40, and 81 % for al., 2005). The authors of the original study for this secondary analysis assessed validity and reliability of the PPS finding strong positive correlations between the PPS and Karnofsky Performance Status (r = 88 .97, n = 23) support in g construct validity and very strong i nter rater reliability (r = .95) between two raters (McMillan et al., 2001). Depression Symptoms The 10 item version of the Clinical Epidemiological Scale Depression ( CES D) (Radloff, 1977) referred of depression. Items are scored as either present or absent, rather than rated for frequency as with the full CES D with h igher scores represent ing more depressive symptoms. Psych ometric characteristics of thi s short form ( CES D 10) showed that Cronbach alpha was .92 and test retest reliability was .83, indicative of excellent reliability Correlation of the short form and full CES D was .88, suggesting that the short form is highly correlated with the lengt hier and more widely validated full version

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29 A cutoff of 4 or more on the scale was found to have high sensitivity (97%) specificity (84%) and positive predictive value ( 85% ) in comparison to clinical diagnosis of depression using the SCID, indicating ex cellent validity for the scale ( Irwin, Artin and Oxman, 1999). Therefore scores of four or higher on the CES D 10 are clinically significant for a diagnosis of depression The CES D 10 scale is well suited for assessment of de pressive symptoms in cancer p atients and their caregivers who may be burden ed by the longer version. Quality of Life The Hospice Quality of Life Index 14 (HQLI 14) was used and is a shortened version of the previously used and validated Hospice Quality of Life Index (McMillan & Weitz ner, 1998). The shortened version (HQLI 14) is designed for repeated clinical use with hospice patients and includes three aspects of overall quality of life: Psycho physiological w ell being; Functional well being; and Social/spiritual w ell being. Each i tem is scored on a 0 to 10 scale with 10 being the most favorable response; item scores are added to obtain a total scale score. Total scores can range from 0 (worst quality of life) to 140 ( best quality of life). Correlations with the original HQLI subs cales Psychophysiological ( r = .90, p = .000 ) Functional (r = .96, p = .000), and Social/spiritual w ell being (r = .89, p = .000) as well as total score (r = .94, p = .000) were very strong and provide evidence of validity of the shortened scale Cronba subscales of the short form subscales Psycho physiological (r = .68), Functional ( r = .7 2), and Social/spiritual (r = .82) well being and total score (r = .77) were acceptable and expected for the shortened scale ( McMillan et al., 2001 ).

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30 Caregiver Dependent Variable Depression Symptoms The 10 item version of the CES D (Radloff, 1977), as described previously, was used to measure caregiver depression symptoms. As previously discussed, t he CES D 10 scale is well suited for assessment of depressive symptoms in cancer patients and their caregivers Data Analysis Procedures Demographic data from caregivers and patients was reporte d using frequencies, percentages, means and standard deviations serial and phi correlation s were used to examine relationship s between caregiver depression symptoms and the patient and caregiver variables. Multiple regression analysis was used to examine whether caregiver health status, gender, ethnicity, age, relationship to patient, social s upport and patient symptom global distress, function al status, depression symptoms, and quality of life were predictive of CES D 10 score Logistic regression analysis was used to examine whether these variables were predictive of CES D 10 score s of 4 or greater Early research determined, using a cutoff of 4 or more on the CES D 10 scale, sensitivity, specificity, and positive predictive value of the scale were 97%, 84%, and 85%, respectively, when compared with clinical diagnosis of depression using the SCID. Therefore, scores of 4 or higher on the CES D short form are clinically predictive for a diagnosis of depression ( Irwin et al ., 1999) Statistical significance was defined as p < 0.05 and the analysis was conducted using SAS 9.1 (SAS Institute Inc ., Cary, NC).

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31 CHAPTER FOUR RESULTS Chapter four presents the results of the data analysis Included are preliminary analysis, descriptive statistics variable correlations multiple regression analys is, and logistic regression analysis. Prelimina ry Analysis The sample of caregivers and patients was analyzed by univariate and frequency analysis Means and standard deviations were reasonable The original sample size was 719 patient / caregiv er dyads. Missing, no response and erroneous data entry resulted in the removal of 141 patient/caregiver dyads Descriptive Statistics Sample Characteristics The sample consisted of 57 8 cancer patient/caregiver dyads newly admitted to hospice home care, for a total of 115 6 individuals Most caregivers we re women, Caucasian, and lived in suburban areas, were age 65, and in below average physical and mental health. More than half reported they were patient spouses (Table 1). Patient Variables Cancer D iagnosis Lung /Mesothelioma p ancreas colorectal, pros tate and breast were the most frequent diagnoses. These five accounted for 63.1% of patients.

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32 Table 1 Demographic Characteristics (n = 578) Variable Mean Std Dev Frequency Patient Quality of Life 102.39 17.12 Functional Sta tus 57.99 10.98 Symptom Distress 20.99 13.89 Depression Symptoms 2.93 2.15 Cancer Diagnosis Lung/Mesothelioma 208 Pancreas 50 Colorectal 40 Prostate 33 Breast 33 Caregiver Age 64.95 14.01 Phys. Health 30.16 7.75 Men. Health 24.37 8.02 Social Support 10.86 1.67 Depression Symptoms 2.97 2.15 Gender Female 426 Male 152 Ethnicity Caucasian 554 Non Caucasian 24 Relationship to Patient Wife 245 Husband 101 Daughter 86 Other 146 Sympt om Distress P atient symptom global distress score totals ranged from 0 to 78 out of a possible range of 0 to 100 Lack of energy and pain were among the most frequently occurring symptoms and those with the highest symptom global distress (Table 2). The mean number of symptoms per patient was 10 each.

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33 Table 2 Patient Symptom Frequency and Percent with Mean and Standard Deviation of Symptom Distress Symptom Frequency % Mean SD Lack of energy 503 87.0 2.61 1.22 Pain 409 70.8 2.29 1.16 Dry mouth 404 69.9 1.84 1.26 Shortness of breath 348 60.2 2.22 1.27 Lack of appetite 345 59.9 1.90 1.35 Feeling drowsy 341 59.0 1.44 1.27 Constipation 266 46.0 2.45 1.28 Cough 264 45.7 1.70 1.26 Worrying 250 43.3 2.10 1.29 Feeling sad 245 42.4 2.08 1.12 Dif ficulty sleeping 242 41.9 2.35 1.15 Nausea 182 31.5 2.11 1.18 Feeling bloated 161 27.8 2.25 1.24 Difficulty swallowing 160 27.7 2.26 1.14 Problems with urination 143 24.7 2.22 1.11 Vomiting 93 16.1 2.35 1.31 Diar rhea 90 15.6 2.44 1.27 Sexual problems 82 14.2 2.59 1.31 Functional Status P atient Palliative Performance Scale scores ranged from 4 0 to 100 out of a possible range of 0 to 100. Most scores were in the 50 70 range indicating a moderate functiona l status. Depression Symptoms P atient CES D 10 depression symptom scores ranged from 0 to 9 out of a possible range of 0 to 10 The percentage of caregivers reporting no depression symptoms was 12. 8 %, 49.3 % reported scores of 1 to 3 and 37. 9 % reported sc ores of 4 or greater.

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34 Quality of Life Patient HQLI 14 scores ranged from 52 to 140 out of a possible range of 0 (worst quality of life) to 140 (best quality of life ). Single question scores have a possible range of 0 to 10 M ean scores on single quest ions ranged from a high of 9.46 on satisfaction with physical care to a low of 5.4 0 on enjoyable activity (Table 3). Table 3 Quality of Life Question Mean and Standard Deviation Questions Mean SD How satisfied are you with the physical care? 9.46 1.16 How satisfied are you with emotional support? 9.27 1.35 Do surroundings improve sense of well being? 9.00 1.63 How satisfied with relationship with God? 8.64 2.20 If you experience pain, how completely is it relieved? 8.42 2.12 How sad do yo u feel? 7.45 2.77 How satisfied with your ability to concentrate? 7.08 2.75 How well do you sleep? 6.75 2.58 How breathless do you feel? 6.73 2.92 How constipated are you? 6.70 3.39 How satisfied with your level of indepen dence? 5.98 3.43 How worried about your family and friends? 5.73 3.30 How well do you eat? 5.51 3.37 How much enjoyable activity do you have? 5.40 3.09 Caregiver Variables Gender Females comprised 73. 8 % of the caregivers. M al es accounted for 26. 2 % Ethnicity Caucasian caregivers comprised 95.8 % of the sample Non Caucasian caregivers account for only 4.15 % of the sample.

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35 Relationship to Patient The majority of c aregivers identified their relationship to the patient as wife 42. 4 %, husband 17. 5 %, and other 25.2%. Daughter s accounted for 1 4.9 %. Age The caregiver age ranged from 1 9 to 97 years Caregivers age d 46 to 64 years accounted for 36.9 %. Those age 65 or over compris ed 54.1% of caregivers. Health Status The Physical Health Com posi te (PCS) indicated below average physical health. T he Mental Health Composite (MCS ) indicated below average mental health. Social Support Caregiver physical, emotional and information support satisfaction scores ranged from 3 to 12, out of a possible ra nge of scores on the scales of 0 to 12. The percentage of caregivers scoring 9 or above on the 12 point scale was 90.8 % Depression Symptoms C aregiver depressions symptom scores ranged from 0 to 10 out of a possible ran ge of scores on the scale of 0 t o 10. The percentage of caregivers reporting no depression symptoms was 12. 6 % The percentage of caregivers reporting depression symptom scores of 1 to 3 was 49.9% with 37.5 % reporting scores of 4 or greater The mean caregiver depression symptom score f or females was somewhat higher and the standard deviation was somewhat smaller. In the sample, 38.3% of females reported depression symptom scores of 4 or greater compared to 35.5% of males with scores of 4 or greater.

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36 Summary All patient and caregive r contiguous variables demonstrated acceptable normal ranges of skewness (SK > 1.0 and < 1.0) and kurtosis ( KU > 2.0 and < 2.0) The kurtosis for the caregiver social support satisfaction variable while outside the normal range, was not extreme enough t o be considered unacceptable for analysis. Multiple Regression Correlation with Caregiver Depression Symptoms The variable for caregiver ethnicity was dichotomized with a code of 0 for non Caucasians and a code of 1 for Caucasians. Dichotomized variabl es codes of 0 and 1 were used for the categorical variables of caregiver relationship to patient and patient diagnoses The r elationships among the variables were analyzed using Pearson product momen t and point bi serial correlations (Glass & Hopkins, 19 9 6 ) The analysis result ed in six variables with significant correlations with caregiver depression symptoms (Table 4 ). Patient symptom global distress, patient QOL, wife caregiver, other caregiver, and caregiver ethnicity had low positive significan t correlation with caregiver depression symptoms. Caregiver support satisfaction had a moderate negative significant relationship with caregiver depression symptoms. Significant negative correlations between the categorical variables of wife and other caregiver relationship to patient were expected as they are m utually exclusiv e The intercorrelation between patient MSAS and HQLI 14, reported in earlier studies was also expected. N one of the intercorrelations among variables were sufficient to be re dundant in predicting the dependent variabl e, caregiver depression symptoms.

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37 Table 4 Patient and Caregiver Variable Intercorrelations CESD 10 D Sx Dist QOL Wife Other Ethnicity Supp. CES D 10 1.000 Sx Dist .095 1.000 021 QOL 083 .643 1.000 045 <. 000 Wife .095 016 .011 1.000 .022 .705 .794 Other 115 .008 .035 .499 1.000 .005 .851 .403 <.000 Ethnicity 087 .017 .107 .050 .001 1.00 .035 .675 010 .233 .972 Supp. .327 .034 .061 .074 .010 .060 1.000 <.000 .403 .142 .076 .817 .149 Note: CES D 10 = c aregiver CES D 10, Sx Dist. = MSAS, QOL = HQLI 14, Wife, Other = caregiv er relationship to patient, Supp = patient support satisfaction. Significant correlations are captured in bold Multiple Regression Analysis The variables correlated with caregiver depression symptoms were entered or removed individually into the regre ssion as predictor variables, based on the prediction model developed from the literature and significance of the squared semi partial correlation coefficients, (Hays, 1994) The resulting regression model included wife caregiver, patient global symptom d istress, and caregiver support satisfaction as predictor variables with caregiver CES D 10 score as the dependent variable (n = 578). The r esults suggest the linear combination of the variables accounted for approximately 1 3 % of the variance in caregiver CES D 10 score (R = .1 290 ) ( Table 5 ). The significance test for this R was F ( 3 574 ) root mean square = 6 7 58807 p < .0001, therefore the model was significant.

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38 The squared semi partial correlation coefficients for all variables were all significa nt at the p < .05 level suggesting the variables sufficiently contribute to the variance in CES D 10 score R) was computed to be .1 5, .15 medium, .25 large). The root mean square error was 2.010 10 indicating the predictions for caregiver CES D 10 score were off by about 2.01 The obtained linear equation, with the standardized regression coefficients that determine the contribution of each predictor to caregiver symptom total score, was: Caregiver CES D 10 = 7. 1365 + 0.5264 wife caregiver + 0 0132 patient symptom global distress 0. 4296 caregiver support satisfaction Squared semi partial correlations obtained for each predicto r indicate the six variables accounted for 13 % suggesting that almost none of the variance in caregiver depression symptom total score was in common to the multiple predictors. The data was screened for outliers and possible violation of the assumptions u nderlying regression. The maximum student residual was 3.407 013 therefore none of the cases had an undue influence on the regression analysis. The scatterplot of the residual with predicted values revealed no violations of linearity or homoscedasticity a ssumptions The skewness (0. 41 ) and kurtosis ( 0. 18 ) indicate the distribution of the residuals was approximately normal. The equation includes significant variables that account for 13% of the variance in caregiver depression sympt oms.

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39 Table 5 Wife Caregiver Patient Symptom Global Distress, and Caregiver Support Satisfaction as Predictors of Caregiver Depression Symptoms Variable b Parameter Estimate Standard E rror t value Pr > |t| Standardized Estimate Squared S emi partial Corr Type II Intercept 7. 13653 0. 57095 12. 50 <.0001 0 Wife 0.5 2639 0. 1 6967 3. 1 0 .00 20 0. 12 120 0. 01461 Sx Dist 0. 013 24 0.00 603 2. 20 .0 284 0.08 566 0.00 7 39 Supp. 0. 42958 0 05034 8.53 <.0001 0. 33353 0. 11051 Note : R = 1 291 R adj = 1 2 44 R oot Mean Squared = 2. 01010 Logistic Regression Correlation with Caregiver Depression Symptom Scores of 4 or Greater The variable for caregiver depression symptom score was then dichotomized with a score of 0 for a CES D 10 score s of 3 or less and a code of 1 for CES D 10 a score s of 4 or greater (n = 57 8 ). This was performed to examine predictors of CES D 10 score s of 4 or greater which have been found predictive for a dia gnosis of depression (Irwin et al., 1999). Univariate statistics showed 62. 5 % (n = 361) of caregivers had CES D 10 scores of 3 or less while 37. 5 % (21 6 ) had scores of 4 or greater Relationships among the variables were analyzed using point b i serial an d phi correlations (Glass & Hopkins, 1996). Wife caregiver had a low positive significant correlation with and caregiver support satisfaction had a low to moderate negative with significant correlations with CES D 10 scores or 4 or greater (Table 6 ).

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40 Table 6 Wife Caregiver, Caregiver Social Support Satisfaction and Depression Intercorrelations CES Wife Supp CES 1.000 Wife .0 87 1.000 036 Supp. 239 073 1.000 <.000 075 Note: CES D 10 = c aregiver CES D 10 Wife, = caregiver relationship to patient, Supp = patient suppo rt satisfaction. Significant correlations are captured in bold Logistic Regression Analysis T he two variables correlated with caregiver depression symptoms were entered i ndividually into the regression as predictor variables, based on the prediction mo del developed from the literature, to explore regression models (Hays 1994 ). The resulting regression model included wife caregiver and caregiver support satisfaction as predictor variables, with caregiver CES D 10 score s of 4 or greater as the dependent variable (n = 578). The model was statistically significant with c hi square ( DF = 2 ) = 39.6155 p <.000 1 and all pr edictor variables statistically significant at alpha .05 (Table 7 ). The resulting logistic equation was : C aregiver CES D 10 7083 + 0.4 4645 wife caregiver .3163 caregiver support satisfaction. Examining odd ratios, being a wife caregiver was positively predictive of a CES D 10 score of 4 or greater. A higher score on the caregiver support s atisfaction was negatively pre dictive of a CES D 10 score of 4 or greater.

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41 Table 7 Wife Caregiver and Patient Support Satisfaction as Predictors of Caregiver Depression Symptoms Score s of 4 or Greater Variable DF b Parameter Estimate b Standard Error Wald Chi Sq Odds Ratio 95 % Wald Confidence Limits Pr > Chi Sq Intercept 1 2.7083 0. 6151 19.3856 . . <.0001 Wife 1 0. 4645 0. 18 01 6.6552 1. 591 1.118 2.265 0 099 Supp 1 0. 3163 0 0566 31.2527 0. 729 0. 652 0.8 14 < 00 01

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42 CHAPTER FIVE DISCUSSION Chapter five presents discussion of the research findings The research question, hypotheses, l imitations of the study, i mplications for h ealth c are p rovi ders and h ospice and r ecommendations for future study also are discussed. Research Question What is the level of depressive symptoms in hospice cancer caregivers? In this sample of caregivers of hospice cancer patients, 12.6 % of caregivers r eport ed no symptoms of depression Of the 87. 4 % of caregivers that reported symptoms of depression 37. 5 % of those reported a score of 4 or above predictive for a diagnosis of depression ( Irwin et al., 1999 ) The result is supported by studies that found 32 to 50 percent of caregivers had depressive symptoms at a level suggesting a diagnosis of depression (Covinsky et al., 2003; Butler et al., 2005 ; Turner, Kaye, Ruffin, & Downey, 2005 ). The level of caregiver depression symptoms may be a result of the stress of the intense experience of caregiving for end of life patients ( Sherwood e t al., 2004 ). Caregivers experiencing depression symptoms may not be able to provide quality care (Thorpe et al., 2006). Caregiver depression symptoms, which may include fatigue, loss of energy and difficulty concentrating, may have difficulty responding to the y impact

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43 Hypothesis 1 The patient and caregiver factors in the model are correlated with caregiver depression symptomatology. Patient Variables The hypothesis is discusse d for each of the caregiver and patient fixed and modifiable factors from the Prediction of Caregiver Depression Symptomatology Model (Figure 3). The model was derived and Emanuel (1998) Model of a Peaceful Death from the Systematic Assessment to Improve Hospice Outcomes Study. Cancer Diagnoses and Symptom Distress None of the patient cancer diagnoses were correlated with caregiver depression symptomatology ; therefore the hypothesis was rejected for patient cancer diagnos is. T he re was a weak positive significant relationship between patient symptom global distress score and c aregiver depression symptoms ( p = 0 21 ) However, there was n o relationship between patient symptom global distress and caregiver depression sympt om score 4 or greater. The hypothesis was therefore partially rejected for patient symptom global distress. Symptom distress was not correlated for depression symptoms of 4 or greater, however it was correlated with depression symptomatology, supporting the findings of earlier studies ( Kurtz, Kurtz, Stommel, Given, & Given, 2001; Redeker, Lev, & Ruggiero, 2000; Bambauer et al., 2006; Fleming et al., 2006). Therefore, adequate management of patient symptoms is important for both patient and caregiver well being and quality of life. Caregivers experiencing depression symptoms, as discussed earlier, may not be able to provide a dequately patient care.

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44 Functional Status Depression Symptoms and Quality of Life The hypothesis wa s rejected for patient functio nal status and patient symptoms of depression T hey were not correlated with caregiver depression symptomatology. The hypothesis was partially accepted for patient quality of life as there was a weak positive, significant correlation (p = .045) between caregiver depression symptoms, but not for score s of 4 or greater. Patient symptom distress has been negatively correlated with patient quality of life (McMillan & Small, 2003). As discussed earlier, caregiver depression symptoms were correlated with pa tient symptom distress. This finding supports the relationship between caregiver depression symptoms and patient quality of life. Therefore, caregiver depression symptoms may negatively impact the ability to quality of life. Caregiver Variables Gender and Relationship to Patient T he hypothesis was rejected as c aregiver gender was not correlated wit h caregiver depression symptomatology. Husband and daughter caregive r were not significantly corre lated with caregiver depression. There was a weak, positive significant correlation between wife caregiver (p = .022) and caregiver depression symptoms, including caregiver depression scores greater than 4 (p = .036). There was a weak, negative significant relationship between other caregiver (p = .005) and caregiver depression symptoms. T herefore the hypothesis was partially accepted for caregiver relationship to patient. Female caregivers, including spousal caregivers, have been found to have higher depression symptoms (Adams et al., 2002; Cossette, et al. 1995; Covinsky et al., 2003;

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45 Gallicchio, et al., 2002; Mui, 1995 ; Zanetti et al., 1998 ) This study found f emale caregivers, particularly female spousal caregivers, are at greater risk for depression symptoms and depression while caregiving during the intense end of life caregiving experience. Caregivers in the category of other included significant others, sons, sisters, mot hers, fathers, and brothers were less lik ely to have depression symptoms. However, o nly 12.6% of caregivers reported no symptoms of depression. The overall depression symptom occurrence in all caregivers, regardless of their relationship to the patient or gender, supports the assessment of careg ivers for symptoms of depression. Age and Ethnicity Caregiver age was not correlated with caregiver depression symptoms, therefore the hypothesis was rejected. There was a weak negative significant correlation (p = .035) between caregiver ethnicity and caregiver depression symptoms indicating Caucasian caregiver were more likely to have lower depression symptoms scores However the hypothesis was only partially accepted as caregiver ethnicity was not correlated with caregiver depression score of 4 or g reater. T he large number of Caucasian caregivers likely influenced the results. An earlier study of 295 African American and 425 Caucasian caregivers found Caucasians had more depressive symptoms than African American caregivers. Social networking and p ositive aspects of caregiving were suggested as the reason for fewer depression symptoms in African Americans (Williams, 2005) Other studies have reported high depression symptom levels regardless of ethnicity or no difference related to ethnicity (Coon et al., 2004; Adams et al., 2002). Factors other than ethnicity may be more important influences on caregiver depression symptom occurrence and level.

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46 Health Status and Support C aregiver physical and mental health status were not correlated with caregiv er depression symptoms therefore the hypothesis was rejected. There was a moderate, negative significant correlation between caregiver support satisfaction and depression symptoms (p < .000), including caregiver depression score s of 4 or greater (p <.00 0). Therefore, the hypothesis was accepted Earlier studies have found caregivers with increased support had fewer depression symptoms, while those with lower social support had increased depression symptoms (Chang et. al., 2001; Grant, 2006; Haley et al. 2003; Williams, 2005). The importance of providing support and assisting caregivers to access support resources is support by these findings. Hypothesis 2 The patient and caregiver factors in the model are predictive of caregiver depression symptomato logy. M ultiple regression analysis found wife caregiver and patient symptom global distress positively predictive and caregiver social support negatively predictive of c aregiver depression symptoms. The other model factors were not predictive (Figure 3). The hypothesis was therefore partially accepted The results emphasize the increased risk of depression symptoms for female spousal caregivers T he influence of patient symptom distress and caregiver social support on caregiver depression symptoms is fu rther supported by these results Hypothesis 3 The patient and caregiver factors in the model are predictive of caregiver depression symptom scores of 4 or greater

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47 Logistic regression found wife caregiver positively predictive and caregiver support nega tively predictive of caregiver depression sc ore s of 4 or greater. The other factors in the model were not predictive (Figure 3). The hypothesis was therefore partially accepted. The results indicate that female caregivers are at higher risk for depressio n and that social support reduces the risk for caregiver depression. Regression Summary The research literature discussed previously supports the positive relationship between wife caregiver and symptom distress with caregiver depression symptoms The re search also supports the negative relationship between caregiver support and caregiver depression symptoms. Caregiver support satisfaction was a suppressor variable. Suppressor variables are important as they increase effect size and are part of the tota l variance of the dependent variable (Walker, 2003). Suppressor variables have also been defined as variables that increase the validity of a set of variables in a regression equation (MacKinnon, Krull & Lockwood, 2000). Limitations of the Study This s econdary analysis used data from a large sample of hospice cancer patients and their caregivers thus maximizing financial and human research resources with no additional impact of the research on the participants. The foc us of hospice care is primarily th e care of the patient to minimize suffering at the end of life with the informal caregiver as a partner in the process. The original study was designed to test the intervention of enhanced and structured assessment on caregiver outcomes including depressi on symptoms. M any instruments were used to measure factors theorized to

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48 impact caregiver depression symptoms while minimizing caregiver and p atient burden of participation. However, this resulted in limitation s for this secondary analysis. Other factor s known from the literature to be associated with caregiver depression symptoms, such as caregiver burden, history of depression, mastery, and coping were not measured Measuring only baseline data may not capture factors impacting the prediction of caregi ver depression that may intensify as the caregiver experience progresses, such as patient symptom distress and decreases in patient funct ional status. Examining instruments used in the study, i nterpretation problems can arise using the SF 12 summary sca les in some analysis, as symptoms in one composite score are likely to produce inflated scores in the other composite. The scale may also produce erroneous results in large studies (Windsor, Rodgers, Butterworth, Anstey, & Jorm, 2006). Other studies have linked depression symptomatology with poor health (Doorenbos et al., 2007; Ferketich et al., 2000; Schulz & Beach, 1999; Vitaliano et al., 2002). Doorenbos et al, using the full version of the CES D and the SF 36 found lower health status of caregivers o f advanced cancer patients associated with caregiver depression symptoms. Considering the CES D10 reported good validity and reliability, the SF 12 may not have adequately measured caregiver mental and physical health in this study. However, it is possib le that the shorten ed version of the CES D may have contributed to the lack of a relationship of caregiver depression symptoms with caregiver physical and mental health. The correlation between patient MSAS and HQLI 14 was expected as they were correlated in an earlier study using the longer version of the HQLI. However, t he re was less variance in patient HQLI 14 scores than would be expected for patients in various stages of disease in hospice. The low amount of variance may indicate

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49 patient quality of life was not adequately measure d by this shortened instrument Patient functional status was limit ed to PPS scores of 40 or greater, which may have affected the relationship of patient functional status and caregiver CES D 10 score. Social support satisf action scores tended to be high with limited variance This may indicate actual social support or that caregivers were not clearly instructed not to refer to support received from hospice when responding to the social support questions on patient admissio n to hospice The small number of ethnic minorities in the sample was also a limitation. Implications for Nursing Practice Nurses and Nurse Practitioners Depression symptoms result in suffering for the caregiver and potential loss of the ability to pro vide quality care to patients at the end of life. Voluntary caregivers will continue to be important sources of care for end of life cancer patients. Many individuals are now part of the sandwich generation of adults taking care of two generations, often their children and parents, at the same time ( Wujcik, 2008). These baby boomers, born between 1946 and 1964, have also been referred to as the stretched generation, as caregiving of parents occurs at the same time they are finishing raising their own chi ldren (Rogerson & Kim, 2005). E mployment and other responsibilities in addition to caregiving may increase the risk for depression symptoms in this stretched generation. Nurses and nurse practitioners caring for cancer patients at the end of life should be knowledgeable of the symptoms of depression to adequately provide family centered care to patients and their caregiver s. Nurses should screen caregivers for depression or refer for screening as appropriate for their professional role. They should al so be aware

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50 of the factors correlated with caregiver depression symptoms, particularly patient symptom distress and patient quality of life. S ymptom distress was found predictive of depression symptoms in this study Efforts to manage patient symptoms an d protect quality of life are crucial for an environment that fosters a peaceful death for the patient and reduces the risk of depression symptoms for the patient. Social support was found negatively predictive of caregiver depression symptoms and depress ion. Nurses and nurse practitioners of end of life cancer patients should foster social support for informal caregivers and assist informal caregivers in identifying social support resources. In this secondary analysis more than a third of female and m ale caregivers had depression symptom scores of 4 or greater on the CES D 10 on admission to hospice; this is clinically significant. C aregiving by female spouse of cancer patients was found predictive of depression symptomatology and depression. However c aregivers of end of life cancer patients, regardless of gender, are at significant risk for depression symptoms. Given the level of caregiver depression symptom at ology found on admission to hospice, assessment of caregivers by their primary care nurses nurse practitioners, and physicians is important to identify those caregivers at risk for depression symptoms Nurses and nurse practitioners in primary care should be aware of their patients providing informal care to cancer patients. Identifying pati ents serving as informal cancer caregivers is important to adequately assess physical and mental health risks during and after the caregiving experience. Early assessment of caregivers at risk for depression may result in early diagnosis and treatment. V oluntary caregivers should be referred for additional screening and treatment as their depression symptoms warrant. Efforts by primary care

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51 providers to foster and increase support for voluntary cancer caregivers are important to protect caregiver menta l and physical health. Nursing Colleges and Universities In view of the importance of informal caregivers, n ursing college and continuing education courses should include curriculum focusing on the issues confronting informal caregivers Courses shoul d provide nurses and nurse practitioners with the knowledge and skills necessary to assess and identify voluntary physical and mental health risks Curriculum should also include knowledge of the benefits of involuntary caregiving to the patien t, the caregiver and society. Health Care Policy Nurses and nurse practitioners should advocate for policies and programs that support the voluntary caregiver. Voluntary caregivers are important partners in providing quality care to patients at the end o f life. Hospice The sample had a small number of non Caucasians. More effort is need ed to reach out to non Caucasian s to provide and imp rove access to hospice services. Hospice nurses and nurse practitioners should continue to assess voluntary caregiver s for symptoms of depression. Voluntary caregivers should continue to be offered emotional, physical and informational support and assisted in identifying support resources. Hospice should inform voluntary caregivers of the physical and mental health ris ks associate with caregiving. They should be encouraged to protect their own health by scheduling and keeping appointments with their health care provider for routine and other required care.

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52 Hospice should advocate for policies and programs that support voluntary caregivers as partners in providing care for end of life patients. Recommendations for Future Study Depression symptomatology in caregivers of cancer patients near the end of live is multi factorial This secondary analysis examined predictors of depression from baseline data from an interventional study Studies specifically designed to examine predictors of depression symptoms in caregivers of end of life cancer patients should incorporate instruments to measure additional factors associated with caregiver depression symptoms These factors, such as caregiver history of depression mastery, burden, coping, attitude sense of coherence neuroticism and attitude t owards caregiving should be measured. A future study should focus on these fact ors associated with caregiver depression symptoms while limiting, as much as possible the burden to caregiver and patient participants. A longitudinal study would provide data on caregiver depression symptoms during the cancer caregiver experience.

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63 Walker, R. J., & Pomeroy, E. C. (1996). Depression or grief? The experience of caregivers of people with dementia. Health and Social Work, 2 1 (4), 247 254. Whang, W., et al. (2009). Depression and Risk of Sudden Cardiac Death and Coronary Heart Disease in Women. Journal of the American College of Cardiology, 53 (11), 950 958. Ware, J., Jr., Kosinski, M., & Keller, S. D. (1996). A 12 Item Short Form Health Survey: construction of scales and preliminary tests of reliability and validity. Medical Care, 34 (3), 220 233. Weitzner, M. A., Haley, W. E., & Chen, H. (2000). The family caregiver of the older cancer patient. Hematology/Oncology Clinics of North America, 14 (1), 269 281. Williams, I. C. (2005). Emotional health of black and white dementia caregivers: A contextual examination Journal of Gerontology 60B (6), 287 295. Windsor, T. D., Rodgers, B., Butterworth, P., Anstey, K. J., & Jorm, A. F. (2006). Measuring physical and mental health using the SF 12: implications for community surveys of mental health. Australian and New Zealand Jour nal of Psychiatry 40 (9), 797 803. Wujcik, D. M. (2008). Are you part of the sandwich generation? ONS Connect, 23 (11), 7. Zanetti, O., Frisoni, G. B., Bianchetti, A., Tamanza, G., Cigoli, V., & Trabucchi, M. (1998). Depressive symptoms of Alzheimer careg ivers are mainly due to personal rather than patient factors. International Journal of Geriatric Psychiatry, 13 (6), 358 367.

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About the Author degree in Health Service Administration from Ithaca College in 197 8 N ursing from Tompkins Cortland Community College in 2000, a nd a in N ursi ng in 2001 from Elmira College. N in O ncology in 2006 from the University of South Florida He is a nationally certified Oncology and Acute Care Nurse Practitioner. He has been a PhD student at the University of South Florida since 200 6 He is a member of Sigma Theta Tau International Ho nor Society of Nursing and The Honor Society of Phi Kappa Phi. end of life care depression, falls and fatigue. He has published nationally in the areas of oncology patient depressio n, symptom distress and depression symptoms in voluntary caregivers of cancer patients.


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Predictors of cancer caregiver depression symptomatology
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ABSTRACT: While the duration of the cancer illness may be shorter than that of other serious diseases, such as Alzheimer's disease, cancer caregivers provide many more hours of care during a week. Research directed at the intensive experience of caregiving of hospice cancer patients is needed as there is limited research of predictors of hospice cancer caregiver depression symptomatology. The purpose of the study was to examine predictors of depression symptomatology in caregivers of hospice cancer patients. A secondary analysis was conducted using baseline assessment data of patients and caregivers from a larger study of patient/caregiver dyads from two large hospices (NIH 5R01 NR 008252). Statistical methods included Pearson's, point bi-serial, and phi correlation. Multiple regression and logistic regression were used to examine prediction. The variables of wife caregiver, patient symptom global distress, and caregiver support satisfaction accounted for 13% of the variance in caregiver depression symptomatology as measured by the CES-D 10 (M = 2.97, SD = 2.15) in the patient/caregiver dyad sample (n = 578). Approximately 38% of the 578 caregivers had CES-D 10 scores of 4 or greater upon patient admission to hospice. CES-D 10 scores 4 or greater have been found predictive for a diagnosis of depression (Irwin, Artin and Oxman, 1999). Examining odd ratios, wife caregiver was positively predictive and caregiver support satisfaction was negatively predictive of CES-D 10 scores of 4 or greater. The results support the need for depression symptom screening of caregivers, the importance of support satisfaction and the need to examine additional caregiver factors, along with patient factors, that may contribute to depression symptomatology in caregivers of hospice cancer patients.
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