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Level of demoralization as a predictor of stage of change in patients with gastrointestinal and colorectal cancer

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Title:
Level of demoralization as a predictor of stage of change in patients with gastrointestinal and colorectal cancer
Running title:
Demoralization and change
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Book
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English
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Cockram, Cheryl Anne
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University of South Florida
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Tampa, Fla.
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Subjects / Keywords:
subjective incompetence
alcoholism
gastrointestinal cancer
transtheoretical theory
Dissertations, Academic -- Nursing -- Doctoral -- USF   ( lcsh )
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government publication (state, provincial, terriorial, dependent)   ( marcgt )
bibliography   ( marcgt )
theses   ( marcgt )
non-fiction   ( marcgt )

Notes

Summary:
ABSTRACT: Demoralization is a concept that evolved out of the study of individuals under stress. It is defined as the combination of distress and subjective incompetence in the presence of inadequate social bonds. When patients with alcohol abuse problems are diagnosed with cancer they may become demoralized and be unable to summons adequate resources to address issues associated with changing their addictive behavior. The Stage of Change Model (SOC), one of the primary approaches in addiction therapy, is used to guide individuals through the process of behavioral change. This two phase study examined the relationship between demoralization and stage of change. The fist phase was a retrospective chart review (N =112) intended to establish the psychometrics of a new instrument measuring the subjective incompetence component of demoralization. The twelve item Subjective Incompetence Scale (SIS) demonstrated strong internal consistency (.92) and strong indices of being a reliable and valid measure. As expected there was a weak relationship in a positive direction with pain and confusion, a moderate and positive relationship with avoidant coping, and a strong and positive relationship depression, anger and fatigue. There was a moderate and negative correlation with apathy which was also in the direction expected. Phase two was a correlational study using a survey research design, aimed at examining the relationship between alcohol use, depression, level of demoralization and stage of change. The study was done on a convenience sample of patients in colorectal and gastrointestinal clinics at H. Lee Moffitt Cancer Center (N=71). Depression and demoralization were found to be distinct but related constructs. Level of alcohol consumption was not correlated with SOC. The components of demoralization were regressed on Stage of Change to determine their predictive value. Social support (ISELSF), perceived stress (IES) and subjective incompetence (SIS) resulted in a significant increment in variance explained ( R2 ). The whole model produced R2 =.284, F (7, 53) = 2.847, p =.013 which explained a significant portion of the variance in stage of change. Implications for practice and directions for future research are discussed.
Thesis:
Thesis (Ph.D.)--University of South Florida, 2004.
Bibliography:
Includes bibliographical references.
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Mode of access: World Wide Web.
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by Cheryl Anne Cockram.
General Note:
Includes vita.
General Note:
Title from PDF of title page.
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Document formatted into pages; contains 145 pages.

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aleph - 001469367
oclc - 55643973
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usfldc doi - E14-SFE0000269
usfldc handle - e14.269
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ABSTRACT: Demoralization is a concept that evolved out of the study of individuals under stress. It is defined as the combination of distress and subjective incompetence in the presence of inadequate social bonds. When patients with alcohol abuse problems are diagnosed with cancer they may become demoralized and be unable to summons adequate resources to address issues associated with changing their addictive behavior. The Stage of Change Model (SOC), one of the primary approaches in addiction therapy, is used to guide individuals through the process of behavioral change. This two phase study examined the relationship between demoralization and stage of change. The fist phase was a retrospective chart review (N =112) intended to establish the psychometrics of a new instrument measuring the subjective incompetence component of demoralization. The twelve item Subjective Incompetence Scale (SIS) demonstrated strong internal consistency (.92) and strong indices of being a reliable and valid measure. As expected there was a weak relationship in a positive direction with pain and confusion, a moderate and positive relationship with avoidant coping, and a strong and positive relationship depression, anger and fatigue. There was a moderate and negative correlation with apathy which was also in the direction expected. Phase two was a correlational study using a survey research design, aimed at examining the relationship between alcohol use, depression, level of demoralization and stage of change. The study was done on a convenience sample of patients in colorectal and gastrointestinal clinics at H. Lee Moffitt Cancer Center (N=71). Depression and demoralization were found to be distinct but related constructs. Level of alcohol consumption was not correlated with SOC. The components of demoralization were regressed on Stage of Change to determine their predictive value. Social support (ISELSF), perceived stress (IES) and subjective incompetence (SIS) resulted in a significant increment in variance explained ( R2 ). The whole model produced R2 =.284, F (7, 53) = 2.847, p =.013 which explained a significant portion of the variance in stage of change. Implications for practice and directions for future research are discussed.
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PAGE 1

Demoralization and Change Level Of Demoralization As A Predictor Of Stage Of Change In Patients With Gastrointestinal And Colorectal Cancer by Cheryl Anne Cockram 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: Mary E. Evans, Ph.D. Jason W. Beckstead, PhD. Judith F. Karshmer, PhD. Michael A. Weitzner, MD Date of Approval: March 29, 2004 Keywords: subjective incompetence, alcoholism, gastrointestinal cancer, transtheoretical theory Copyright 2004 Cheryl Cockram

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Demoralization and Change Dedication This dissertation is dedicated to the three peopl e who most profoundly impacted my life. First to my mother, Olive Henderson, who taught me the merit of a sense of humour. The memory of her laughter sustained me through this l ong and arduous process. Then to my father, Norval H. Henderson, who instilled in me the value of knowledge, a deep respect for books and who let me ask the never ending question “why?” Finally to my husband Robert (Eddie) Cockram who taught me to be optimistic, to persevere and to always hit the save button. Without his unconditional support this dissertation would not have happened. I also wish to acknowledge the unwavering sup port of my three cats, who diligently held down papers, warmed my lap, a dded several pages of single letter text and blocked my view of the screen when my eyes got too blurry to read.

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Demoralization and Change Acknowledgement I would like to thank my committee members for guiding me through this process rather than pushing me through it, although at time I am sure it was difficult. More specifically, I am grateful to Mary Evans, PhD., my chairperson who was a fountain of knowledge. She lent me her support, her ear and sometimes her desk Thank you to Jason Beckstead, PhD., for patiently repeating things until I finally grasped the concepts. Without his support and advice the statistical component of this dissertation w ould not have happened. My thanks to Judy Karshmer, PhD., for playing the devil’s advocate and for constantly correcting my tense. My thanks to Michael Weitzner, MD. for guiding me through the research process, offering his clinical expertise and for letting me work three days a week. Finally, to Larry Schonfeld, PhD, thank you for believing that this di ssertation was worth doing and would get done.

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Demoralization and Change i Table of Contents List of Tables v List of Figures vi Abstract vii Chapter One 1 Introduction 1 Statement of the Problem 5 Chapter Two 7 Review of Literature 7 Demoralization 7 Demoralization in Sociology 7 Demoralization as a Concept in Anthropology 8 Demoralization as a Concept in Psychology and Psychiatry 9 Demoralization in the Nursing Literature 11 Demoralization as a Concept in Pathophysiology 12 Apathy 13 Depression 15 Adjustment Disorder 15 Demoralization 17 Social Support 17 Stress 18 Subjective Incompetence 19 Summary 20 Chapter Three 22 Phase One 22 Definitions 22 Depression 22 Subjective Incompetence 22 Apathy 23 Alexithymia 23 Purpose of the Study 23 Hypothesis 23 Hypothesis #1 23 Methodology 24 Research Design 24 Methods 24 Sample Criteria 25 Instruments 25 Brief Pain Inventory 25 Toronto Alexithymia Scale 25 Profile of Mood States 26 Brief COPE Scale 27

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Demoralization and Change ii Apathy Evaluation Scale 28 Subjective Incompetence Scale 29 Informed Consent 30 Data Collection 30 Data Management 30 Missing Data 30 Data Analysis 31 Results 31 Discussion 32 Phase Two 34 Definitions 35 Alcohol Abuse 35 Depression 35 Inadequate Social Support 36 Subjective Incompetence 36 Distress 36 Demoralization 36 Stage of Change 37 Precontemplation 37 Contemplation 37 Preparation 37 Action 37 Maintenance 37 Termination 37 Purpose of the Study 38 Hypotheses 38 Hypothesis #1 38 Hypothesis #2 39 Hypothesis #3 39 Methodology 39 Research Design 39 Methods 39 Sample Criteria 40 Power Analysis 40 Instruments 40 SCID (Structured Clinical Interview for DSM-IV-TR) 41 CES-D (Center for Epidemiologic Studies-Depression Scale) 41 IES (Impact of Events Scale) 42 SIS (Subjective Incompetence Scale) 42 ECOG-PSR (Eastern Cooperative Oncology Group-Performance Status Rating) 43 Stages of Change Assessment for Alcohol 44 Marlowe-Crowne 44 ISELSF (Interpersonal Social Evaluation List –Short Form) 45 Informed Consent 46 Research Authorization 46 Data Collection 46 Data Management 47 Missing Data 47 Data Analysis 47

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Demoralization and Change iii Hypothesis #1 47 Hypothesis #2 48 Hypothesis #3 48 Chapter Four 50 Results 50 Descriptive Statistics 50 Univariate Analysis 50 Hypothesis Testing 51 Hypothesis #1 51 Hypothesis #2 52 Hypothesis #3 53 Summary 57 Chapter Five 59 Conclusions, Limitations and Implicati ons for Practice and Future Research 59 Introduction 59 Interpretation 59 Limitations 61 Implications for Practice 63 Future Research 65 References 66 Appendices 72 Appendix A: Letter of Exemption 73 Appendix B: Notice of Eligibility 74 Appendix C: General Background Information 75 Appendix D: Subjective Incompetence Scale (SIS) 80 Appendix E: Profile of Mood States (POMS) 81 Appendix F: Toronto Alexithymia Scale (TAS) 85 Appendix G: Brief Cope (COPE) 88 Appendix H: Apathy Evaluation Scale (AES) 90 Appendix I: Brief Pain Inventory (BPI) 91 Appendix J: Center for Epidemiologic Studies Depression Scale (CES-D) 93 Appendix K: Permission to Make Copies of Research Version 94 Appendix L: Structured Clinical Interview for DSM-IV (SCID-Mood Module) 95

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Demoralization and Change iv Appendix M: Structured Clinical Interview for DSM-IV (SCID-ETOH) 107 Appendix N: Impact of Events Scale (IES) 116 Appendix O: Eastern Cooperative Oncology Group (ECOG-PSR) 117 Appendix P: Interpersonal Social Evaluation List Short Form (ISELSF) 118 Appendix Q: Stages of Change (SOC) 120 Appendix R: Marlowe-Crown (MC-20 121 Appendix S: Informed Consent 122 Appendix T: Research Authorization 128 About the Author

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Demoralization and Change v List of Tables Table 1 Comparison of the Diagnostic Criter ia for Demoralization and Apathy 14 Table 2 Comparison of the Diagnostic Criteria for Depression and Demoralization 16 Table 3 Comparison of the Diagnostic Cr iteria for Adjustment Disorder and Demoralization 18 Table 4 Pearson correlations between the Subjective Incompetence Scale (SIS) and related variables 33 Table 5 Comparison of Respondents on Alcohol & Depression Screens to Subjects that Refused. 51 Table 6 Means of components of demoralization by Stage of Change. 53 Table 7 Pearson correlations between compone nts of demoralization and related medical variables. 55 Table 8 Summary of Hierarchical Regression Analysis for Variables Predicting Stage of Change 57

PAGE 9

Demoralization and Change vi List of Figures Figure 1 Proposed Model of Demoralization 19 Figure 2 Logic Model for Predicting Stage of Change from Level of Demoralization 34

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Demoralization and Change vii Level of Demoralization as a Predictor of Stage of Change in Patients with Gastrointestinal Cancer Cheryl A. Cockram ABSTRACT Demoralization is a concept that evolved out of the study of individuals under stress. It is defined as the combination of distress and subjec tive incompetence in the presence of inadequate social bonds. When patients with alcohol abuse problems are diagnosed with cancer they may become demoralized and be unable to summons adequate resources to address issues associated with changing their addictive behavior. The Stage of Change Model (SOC), one of the primary approaches in addiction therapy, is used to guide i ndividuals through the process of behavioral change. This two phase study examined the relationship between demoralization and stage of change. The fist phase was a retrospective char t review (N =112) intended to establish the psychometrics of a new instrument measuri ng the subjective incompetence component of demoralization. The twelve item Subjective In competence Scale (SIS) demonstrated strong internal consistency (.92) and strong indices of being a reliable and valid measure. As expected there was a weak relationship in a positive direc tion with pain and confusion, a moderate and positive relationship with avoidant coping, and a strong and positive relationship depression, anger and fatigue. There was a m oderate and negative correlation with apathy which was also in the direction expected. Phase two was a corre lational study using a survey research design, aimed at examining the relationship between alc ohol use, depression, level of demoralization and stage of change. The study was done on a convenience sample of patients in colorectal and gastrointestinal clinics at H. Lee Moffitt Can cer Center (N=71). Depression and demoralization were found to be distinct but re lated constructs. Leve l of alcohol consumption was not correlated with SOC. The components of demoralization were regressed on Stage of Change to determine

PAGE 11

Demoralization and Change viii their predictive value. Social support (I SELSF), perceived stress (IES) and subjective incompetence (SIS) resulted in a significa nt increment in variance explained ( R2 ). The whole model produced R2 =.284, F (7, 53) = 2.847, p =.013 which explained a significant portion of the variance in stage of change. Implications for practice and directions for future research are discussed.

PAGE 12

Demoralization and Change 1 CHAPTER ONE Introduction There were 7,114,896 cancer-related deaths reported world wide in 2001. Of those 2,306,330 were attributed gastrointes tinal cancers (http://www.who.int/health_topics/). Cancer kills an estimated 526,000 Americans y early, second only to heart disease. Cancers of the lung, large bowel, and breast are the most comm on in the United States. Considerable evidence suggests a connection between heavy alcohol consum ption and increased risk for cancer, with an estimated 2 to 4 percent of all cancer cases thought to be caused either directly or indirectly by alcohol (Rothamn, 1980). Understanding how alc oholism impacts the oncology population is of substantial concern to healthcare providers. The prevalence of alcoholism in the Un ited States has been determined to be approximately 16%, or 40 million people in the general population (Helzer & Pryzbeck; 1991). Alcohol consumption is measured in liters of pur e alcohol according to the alcohol content of beer (4.5%), wine (14%) and spirits (42%). World Health Organization statistics show a fluctuation in alcohol consumption in the Unite d States from a low in 1961 of 6.78 liters of pure alcohol per adult (15 years and older) to a high of 10.51 in 1980 and an estimate of 9.08 in 2000 (http://www3.who.int/whosis/alcohol/alcohol). The use of alcohol contributes to an annual occurrence of approximately 100,000 deaths, and the related health, social, and economic consequences from alcohol use r esults in additional costs of a pproximately $100 billion a year (http://www.niaaa.nih.gov/databases/cost.htm). Alc ohol use and alcoholism has contributed to 3% to 5% of cancer-related deaths in the under 65 year old population in United States (Doll & Peto; 1981, Higginson & Muir, 1979; Milo, 19 81, Doll, Forman, La Vecchia & Wouteersen, 1999). The cancers most commonly associated with alcohol consumption include upper aerodigestive tract cancers, gastric cancer, and sm all and large bowel cancers. The reason for the increased cancer risk associated with increasing alcohol consumption is not completely

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Demoralization and Change 2 understood (Harris, 1997). It may be due to the carcinogenic effect of the first metabolite of ethanol, acetaldehyde (Harris, 1997, Harty et al., 19 97). High intake of beer and spirits has been found to be a risk factor for small bowel adenocar cinomas with an odds ratio of 3.5 for beer and 3.4 for spirits (Kaerlev et al., 2000). Heavy drinke rs (mean daily alcohol intake 117 (SD 4) g/day for a mean duration of 22 (SD 0.6) years have a risk factor of developing high-risk adenomas or cancer at an odds ratio of 1.6. (Bardou et al., 2002). The combination of alcohol abuse and a cancer diagnosis may have serious nega tive consequences for patient outcomes. At the time of their cancer diagnosis, alc ohol abusing patients are not only challenged with a distressing medical illness but often it is the first time they must confront the implication that their addiction to a substance has had dire h ealth implications. They may come into treatment having abstained from alcohol for less than twenty-four hours. This combination of recent abstinence and stress of diagnosis and treatment put the patient at risk for delirium and relapse. Delirium was recognized as far back as the 16th century (Lipowski, 1991). Its clinical features included a disturbance of consciousness, changes in attention, cognition and perception, with rapid onset and a waxing and waning course (A merican Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders, 1994). Delirium is more likely to occur in those with vulnerable nervous systems, young children, geri atric populations and patients in withdrawal from alcohol. A recent study estimates that delirium impacts lengths of stay for more than 2.3 million geriatric patients each year thus increasi ng health care dollar expenditures dramatically (Rizzo, Bogardus, Leo-Summers, et al., 2001). Patients developing delirium while hospitalized have poorer outcomes including longer lengths of stay, increased mortality both during hospitalization and post discharge, require high le vels of care at discharge and frequently require re-hospitalization or institutiona lization (Francis & Kapor, 1992) Further, those who develop delirium while hospitalized are at greater risk fo r developing dementia (relative risk 3.23, 95 % confidence interval 1.86-5.63) (Rookwood, Cosway & Carver et al., 1999).

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Demoralization and Change 3 Patients who are hospitalized with cance r frequently develop delirium due to the physical challenges of their therapies, the impa ct of their cancer and pre-existing addictions. Recent studies have found that 28-44% of cancer patients are delirious on admission to the hospital and 68-88% develop delir ium before death (Massie, Holland, & Glass, 1983, Minagawa, Uchitomi, Yamawaki, & Ishitani, 1986, Bruera, M iller, McCallion, et al., 1992, Pereira, Hanson, & Bruera, 1997). Studies of clinical subsets of delirium a nd associated pathophysiology reveal that metabolic encephalopathy is associated with hypoactive delirium, and withdrawal syndromes induce hyperactive delirium (O’Keefe, & Lavan, 199 9). Since delirium in an oncology population is frequently multifactorial, it can be indicative of poor prognosis and s hortened survival times (Caraceni, Nanni, & Maltoni, et al., 2000). Delirium negatively impacts several features of palliative care of cancer patients including pain and symptom management, quality of life and caregiver stress. Since appropriate polypharmacy, paraneoplastic sy ndromes, dehydration and preexisting addictions cloud the picture of delirium in cancer patients, it is not surprising that delirium is under recognized and undertreated (Breitbart, Rosenfeld, Roth, et al., 1997). Addictive behaviors including alcohol abuse have been clearly linked to demoralization (Prochaska, DiClemente & Norcross, 1992). Demora lization has been defined as the combination of distress and subjective incompetence in the pr esence of inadequate social bonds (Frank, 1974). Most major theories of addiction postul ate a correlation between increasing stress, motivation to use, and relapse (Marlatt & Gordon, 1985; Koob & LeMoal, 1997). Acute stress in the newly abstinent patient may result in a regulati on failure that initiates the patterns of behavior which reinforce negative affect and result in relapse. This failure to mainta in abstinence results in subjective incompetence and increases the risk of the patient becoming demoralized. Demoralization impedes the patient's perceived ability to initiate change in his or her addictive behaviors.

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Demoralization and Change 4 How people change and what motivates change behavior has been the subject of intense study. Psychotherapeutic approaches focus on patie nts’ efforts to understand and change their behavior and most produce favor able and equivalent outcomes (Luborsky, 1975). More recently researchers have focused on developing a guiding theory of change (Prochaska, DiClemente, & Norcross, 1992). Since the model included primary change processes gleaned from all of the major psychotherapies the authors called it the St age of Change (SOC). SOC has become one of the primary approaches in addiction therapy and h as been used to help patients change negative behaviors as well as initiate positiv e health related behaviors. The Stage of Change (SOC) serves as a guide to understanding how demoralization affects patients' efforts to abstain. The model posits that change involves progression through six stages: precontemplation, contemplation, preparation, ac tion, maintenance and termination. Patients in the precontemplation stage are described as "so demoralized they are resigned to remaining in a situation they consider their fate "(Prochaska, 1994, p. 75). The social-emotional and physical consequences of addictive behaviors are stressf ul. Patients in the precontemplation stage of change may deny their addictive behavior to themselves and others because they feel overwhelmed and helpless. Previous failed attemp ts to master their addiction may result in subjective incompetence. Since addicted patients tend to associate with addicted peers they may also have inadequate social supports. The triad of stress, subjective incompetence and inadequate social bonds result in demoralization. As the patient moves from precontemplation to contemplation they begin to gather their resour ces to mount an attempt to change. If the patient takes the risk of acknowledging addiction and m eets with support from others they begin to develop a sense of competence. If they meet with failure or inadequate support their subjective sense of incompetence is reinforced. Although each stage of change carries with it the risk of failure and relapses the success of negotiating the previous stage reinforces the patient's sense of mastery and shields them from subjective inco mpetence. Success is cumulative and failure at a later stage may be a temporary set back until the patient can marshal the needed energy to try

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Demoralization and Change 5 again. Demoralization is seen as an impediment to change and a core concept to designing interventions aimed at promoting change. Si nce the author postulates that levels of demoralization decrease as patients master each stage, the focus in this study was on the first two stages of precontemplation and contemplation. Statement of the Problem Ongoing addictive behaviors negatively impact chemotherapy, pain management, palliation, and end of life care. Practitioners may belie ve that it is inappropriate to expect patients to give up the comfort or pleasure of his or her addiction at the traumatic time of their diagnosis and initial treatment (Passik & Theobald, 2000). On the contrary, during the time of diagnosis and early treatment the patient may be most open to acknowledgement of his or her addiction and support of their effort to abstain. Understa nding demoralization and the role it plays in maintaining the patient's denial of his or her alcohol dependency or reluctance to attempt to abstinence is imperative to the development of in terventions for this vulnerable population. The purpose of this study was to determine th e extent to which the level of demoralization can be used to predict stage of change. It is the first step in developing interventions directed at decreasing demoralization and supporting patients' efforts to change behaviors that impact treatment outcomes and quality of life. The goal of this study is to enhance th e understanding of potential psychological processes that influence alcohol abusing patients’ acknowledgement of and readiness to address their addiction. This area has been neglected in the oncology research literature. Studying the concept of demoralization in an alcohol abusing cancer population as one of those psychological mechanisms will significantly advance the field a nd provide important evidence that will lead to the development of specific empirically based inte rventions directed at improving quality of care. Interventions aimed at reducing appraised st ress, increasing social support and challenging subjective incompetence would su pport patients’ efforts to change addictive behaviors. The

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Demoralization and Change 6 development of timely assessments and interventions targeted to an at risk population at the time of admission could significantly reduce patient and family distress, the care burden of nursing staff, hospital costs and patient outcomes. In or der to appreciate the development of the concept of demoralization and recent work done in the area a review of literature across the social sciences was undertaken and is described in Chapter Two.

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Demoralization and Change 7 CHAPTER TWO Review of Literature Demoralization The impact of stress on chronic illness a nd disease outcomes has been the subject of intense study (Selye, 1973; Tache & Selye, 1985; Difede, Ptacek et al., 2002). Coping style, locus of control, hardiness, social support and health promoting behaviors impact how an individual copes with stress (Agrawal & Pandey, 1998; Me ijer, Sinnema, Bijstra, Mellenbergh, Wolters, 2002; Moos 2002). Demoralization has been identifie d as a factor that negatively impacts coping (Clarke, Mackinnon, Smith, Mackenzie and Herrman, 2000; Kearney, 2001). Demoralization, in fact, is a construct that has been applied in a variety of contexts and bears exploration as a concept that accounts for unique variance to overall emotional distress. Demoralization has been defined as depriving a person of spirit, courage or discipline, destroying their morale and causing confusion and bewilderment (Webster's College Dictionary, 1991). Demoralization appears in the sociological and anthropological literature in reference to society and culture. It is used in psychology, ps ychiatry and nursing to describe an individual’s experience and it is seen again in the medical litera ture in a physiological context. Clarifying the concept of demoralization is the first step in de veloping a consistent distinct definition and a working model that will potentially lead to the development of a measurement instrument. Demoralization in Sociology Sociology is the study of the origin, devel opment, organization and functioning of human society. In this context demoralization is seen as a social phenomenon with its roots in social dysfunction. Demoralization is described as a state of panic and fear that ranges from discouragement to despair and is used as an o ffensive strategy employed during warfare to immobilize the enemy (Suarez-Orozoco, 1990). It involves the destruction of faith, loss of

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Demoralization and Change 8 meaning in life, disorganization of governing structure and eventually the disintegration of community fabric (Sullivan, 1941). Approaches to thwart demoralization involve communication, solidarity, and realistic distribution of roles. Based on an assessment of the impact of propaganda and infiltration on the morale of people during wa rtime, demoralization occurs when there is a threat to one’s happiness under circumstances that prohibit rational analysis. In this state of affairs, people begin to believe that they are no longer capable of improving their lot and that they cannot prevent others from making the situation worse. A number of authors have studied how social stressors impact demoralization in immigrant populations (Westermeyer, Neider & Vang, 1984; Tsvang, 1991; Zilber & Lerner, 1996). These studies have documented that immigrants, whether by choice or by circumstance, experience high levels of psychological stress duri ng the process of social reintegration and that many factors affect the level of demoralization experienced. Work and re ligious affiliation were found to reduce demoralization by providing soci al contact and financial resources (Tsvang, 1991). Previous mental health problems, lack of social support, living alone and subjective fears of danger increased levels of demoralization (Zilber & Lerner, 1996). Demoralization as a Concept in Anthropology From an anthropological perspective, with its focus on the origin and development of cultures, demoralization is viewed as a societal ill and attributed to state mandated or condoned violence (Scherper-Hughes, 1992). Demoralizati on is understood as de-moralization or the breakdown of the moral fabric of a culture. When violence is supported by a state against its own populace it serves to subjugate, separate and weaken resistance. By creating an atmosphere of unpredictable, irrational violence, the state enge nders chaos and fear, which may prevent its own demise (Desjarlais & Kleinman, 1994). The common thread of demoralization between these two social science disciplines is the sense of disbelie f or discomfirmation of what is considered normative and the resulting inability to affect change.

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Demoralization and Change 9 Demoralization as a Concept in Psychology and Psychiatry In psychology and psychiatry, demoralization evolved out of the concept of hope. In fact, at the midpoint of the last century, demoralization was the condition for which hope was prescribed (Menninger, 1959). Hope was describ ed as a movement forward and a confident search. When one is deprived of hope one giv es up, whereas the restoration of hope leads to energetic efforts to survive. It was suggested th at apathy results from the withdrawal of hope in chronic mental facilities (Menninger, 1959). Th e link between hope a nd demoralization was eventually made in the psychotherapy literature when the practice of encouraging realistic hope was introduced as a means of combating demora lization by reducing perceptual ambiguity (Frank, 1968). Demoralization is associated with the temporary loss of hope; however, it is not hopelessness, which is despair. It is at this poi nt in the evolution of the concept that the contributions from sociology, anthropology and the social sciences merge, leading to a refinement of the construct. Sociology contributed the context in which demora lization develops and anthropology established the discomfirmation of wh at the patient perceives as normative. The integration of these different views led to the c onclusion that demoralization was the combination of distress and subjective incompetence in th e presence of inadequate social bonds and the common goal for all psychotherapies was the relief of demoralization (Frank, 1974). Distress is caused by a discomfirmation of the person's expectat ions of the world as it relates to his or her. Subjective incompetence is a state of self-percei ved failure to act in response to a distressing situation in a certain preconceived way according to an internalized standard. An individual might cope effectively with one of these issu es, but in combination, they overwhelm and demoralize the person. Social bonds, a sense of community with shared common assumptions about the world, generally prevent the indivi dual from becoming inundated and demoralized. For example, epidemiological studies of individuals and communities under acute stress such as immigration, natural disaster, or economic strain, confirmed that social integration and sense of community act as buffers against demoralization (Fenig & Levav, 1991).

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Demoralization and Change 10 The subjective experience of demoralizati on has been described as a low mood with pessimistic thinking that may become suicidal at times, passive behavior and sleep and appetite disturbance (Slavney, 1999). Clearly depression and demoralization share some common features. In the past five years the literature on demoralization in psychology and psychiatry has focused on distinguishing demoralization from depres sion. Of note, several alternative terms were used across studies to refer to demoralization. This lack of a definitive label has hampered the use of the concept for diagnostic and research pur poses. Several authors focus on the difference between major depression and demoralization (Dohr enwend, Shrout, Egri, & Mendelsohn, 1980; Angelino & Treisman, 2001). They use the terms "adjustment disorder", "grief reaction" and "situational or reactive depression" in reference to demoralization. They differentiate between the two concepts saying that the depressive cluster of symptoms that signals demoralization is a normative reaction to severe stressors and do es not involve physiological changes. Major depression on the other hand is a physiological disorder that requires intervention with medications and supportive treatments. The aut hors conceptualize demoralization as responding more effectively to”supportive therapy, hope, therap eutic optimism and time, than to medication” (Angelino & Treisman, 2001). They suggest that demoralization is a minor depression that will resolve in time with supportive therapy. Clarke, Mackinnon, Smith, Mackenzie and Herrman (2000) enhanced the description of demoralization by studying a diversified population which included all patients admitted to a general medical ward in the Monash Medical Ce nter during the study period. In order to approximate the type of sample most often referred to in previous literature, the authors used a 20/21 cutoff score on the General Health Ques tionnaire (GHQ). Patients were excluded who could not complete the questionnaire due to mental or physical incapacity or inadequate fluency in English. Of the 2927 patients were screen ed, 988 scored above the cutoff point and 312 of these patients were randomly selected. Data were ga thered using the Monash interview for liaison

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Demoralization and Change 11 psychiatry (Clarke, Smith, Herrman, et al., 19 98). The interrater reliability was high (Kappa = 0.83). The data were analyzed using the multidim ensional latent trait model and the result was a four dimensional solution that accounted for 34% of the variance. The authors labeled the first dimension, accounting for 12% of the variance, demoralization. The symptoms included in this dimension were: dysphoria, flattened mood, lo w self-esteem and self-confidence anxiety, and feelings of loss of control and inability to cope The other dimensions were labeled anhedonia, anxiety and somatic symptoms. Further data were gathered and the authors were able to provide evidence for a fifth dimension of grief reaction. These empirical data supported the idea that grief reaction and demoralization cannot be used interchangeably. Demoralization in the Nursing Literature Although the term demoralization has frequently been used in nursing literature (Weiden, 1994; Nayeri, 1995; Sayre, 2001), the concept has not been defined or used in empirical work until recently. Nursing has identified demoraliza tion in various populations that share the common characteristic of overwhelming stress. The concept has been offered as a relevant diagnosis in palliative care and in cludes increased feelings of dependency relating to subjective incompetence and the perception of being a burde n. Demoralization in this population is seen as a significant predictor of desire to die or suicidal ideation (Kissane & Street, 2001). Demoralization has been used to describ e a theme that emerges from a woman’s experience of domestic violence, as they give up their notion of romantic commitment to their abusive partner (Kearny, 2001). Demoralization in th is context is due to social and emotional isolation and involves immobilization and a sense of having lost control and sanity. More recently a model of demoralization h as been proposed with demoralization as one anchor and depression as the other on a continuum of depressogenic disorders (Rickleman, 2002). In this model cognitive factors including attriti onal styles, helplessness/hopelessness, pessimism, rigidity, and avoidance of responsibility interact with the situational variable of social isolation to

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Demoralization and Change 12 contribute to a person’s vulnerability to demoralization. Demoralization as a Concept in Pathophysiology Given that demoralization appears to be a response to a dist ressing situation, there may be underlying physiological changes associated with demoralization that underscore the need for early intervention. It has been proposed that stressors might leav e their biochemical mark at the level of gene expression and rende r the individual vulnerable to further occurrences of affective disorders, with an eventual malignant transf ormation to rapid cycling, spontaneous episodes (Post, 1992). It is well understood that stress impacts th e hypothalmic-ptiuitary-adrenocortical (HPA) axis. A recent study focused on the relationship between the HPA axis, stress and demoralization in a sample of elderly married couples (Jacob, et al., 1997). Sixty-seven dyads of elderly subjects and their spouses were identified. The stressor wa s an admission of their spouse to hospital for a life threatening illness. The participants were interviewed six times during the 25-month study period using a structured interview. Urine samp les were collected and blood samples were drawn to assess neuroendocrine function. Outcomes in cluded depressive symptomology using the Center for Epidemiologic Studies Depression (CES-D), anxiety using the Psychiatric Epidemiology Research Interview – Anxiety (PER I –A), demoralization was measured with the Psychiatric Epidemiology Research Interview – Hopelessness/Helplessness (PERI –HH) and a sense of well being using a single item measure of self rated health. An inverse relationship was found between urinary free cortisol and scores on the Peri-HH at 13 and 25 months. Higher urinary epinephrine output was consistently associated with higher demoralization scores. Although this study was limited by a relatively small sample size the finding of an inverse correlation between urinary free cortisol and de moralization supports the idea that elevated adrenocortical functioning during the acute phase of a stressor might be adaptive to long range recovery.

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Demoralization and Change 13 Apathy The concept of apathy shares with demoraliza tion a lack of drive or motivation to cope. Apathy is an aspect of a number of neurological a nd psychiatric disorders and is often considered a presenting feature rather than a single diagnosis. Apathy is distinguished from other disorder of motivation in that it is not attributable to a di minished level of consciousness, an intellectual deficit or emotional distress (Marin, 1990). Apathy is described as a dulled emotional tone associated with detachment or indifference (Kapla n, Sadock & Grebb, 1994). In general, apathy may be seen in response to overwhelming situati ons such as natural catastrophes, personal loss or tragedy or sudden social and role changes. Apat hy may also be associated with certain medical conditions such as frontal lobe injuries or tu mors, cerebrovascular traumas or hypoxic brain damage. Apathy is not a simple lack of motiva tion or emotional blandness, for although patients with frontal lobe injuries may present as apathetic they are capable of violence and irritability (Marin, 1990). Apathetic states may be seen as a co mponent of some motivational disorders such as hypoactive delirium, dementia, abulia and depr ession; however, they share only the surface qualities of passivity or compliance but lack the affective indifference that is the hallmark of apathy. Marin (1991) clarified the definition as re duced goal-directed activity in the behavioral, cognitive and emotional domains. In further work, Marin (1997) differentiated apathy from depression saying, “apathy is a syndrome of diminished motivation whereas depression is by definition a disorder of mood”. Andersson, Krogstad and Finset (1999) assessed 72 individuals with brain injuries, who were engaged in rehabilitation for apathy and de pression. Apathy was measured using the Apathy Evaluation Scale (AES) developed by Mari n (1997). Depression was measured with the Montgomery and Asberg Depression Rating S cale (MADRS) (Montgomery & Asberg, 1979). Psychophysiological data were gathered using h eart rate and skin conductance levels (SCL). The individuals were exposed to mental stressors d esigned to produce psychophysiological reactivity. Apathy was most severe in those individuals w ith subcortical damage and right hemisphere

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Demoralization and Change 14 damage, regardless of the cause. Apathy and depression had overlapping presentations, in that those individuals who were depressed were more likely to be apathetic. There was an inverse relationship between apathy and physiological reactiv ity that the authors attributed to emotional indifference. Fones (1998) warned that apathy and depressi on, although clinically different, might be symptoms of other syndromes and as a result apathy may be misdiagnosed as depression. He points out that apathy does not respond to an tidepressant or supportive therapy and suggests instead that it should be treated with stimulants and dopamine antagonists. Refer to Table 1 for a comparison of the diagnostic criteria for demoralization and apathy (Marin, 1997). Table 1 Comparison of the Diagnostic Criteria for Demoralization and Apathy Demoralization Apathy Affective symptoms of existential distress, including hopelessness or loss of meaning and purpose in life Cognitive attitudes of pessimism, helplessness, sense of being trapped personal failure or a lack of a worthwhile future Conative absence of drive or motivation to cope differently Associated features of social alienation or isolation and lack of support Allowing for fluctuation in emotional intensity these phenomenon persist across more that two weeks A major depressive episode or other psychiatric disorder is not present as the primary condition A profound lack of emotional tone with a general impairment of the capacity for encoding and transforming emotional information Reduced emotional tone does not preclude irritability or violence The patient is able to verbalize and identify affective states in others There are deficits in overt behavioral, cognitive and emotional concomitants of goal directed behavior Lack of motivation that is not attributable to a diminished level of consciousness, an intellectual deficit or emotional distress

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Demoralization and Change 15 Depression Unlike apathy, depression shares some features with demoralization. Endogenomorphic depression is an un-reactive pervasive impairment of the capacity to experience pleasure or to anticipate pleasure. This inhibition of pleasure results in a lack of interest and investment in the environment (Klein, 1974). Two criteria distingui sh demoralization from depression: 1) the presence of subjective incompetence and 2) the magnitude and direction of the patient’s motivation (de Figuiredo, 1993). In depression there is a loss of both consummatory and anticipatory pleasure, while in demoralization the patient cannot anticipate pleasure but can experience it. Depressed individuals have decreased motivation to act, while those who are demoralized similarly lack motivation, not due to the loss of drive but to a loss of the selfconfidence to act in a manner suited to the solutio n of their problem. One of the main features of depression anhedonia, or a loss of pleasure or inte rest in daily activities, does not occur in demoralization (Kissane & Street, 2001). Demora lization is less severe and pervasive than depression. Cognitively the person who is demora lized will be rigid, helpless, uncertain and pessimistic, presenting with anxiety, discour agement and frustration (Rickleman, 2002). A comparison of the diagnostic criteria for depression as found in the DSM-IV and demoralization as proposed by Kissane and Street (2001), shows the difference in the depth of cognitive impairment, engagement a nd somatic features (See Table 2). Adjustment Disorder Adjustment disorder is the term most simila r to demoralization. The DSM-IV states that adjustment disorder is the principal diagnosis for 5 to 20% of adults in outpatient mental health treatment ( DSM-IV 1994 fourth edition). Prior to this the term, transient situational disturbance and reactive depression were used to refer to a depressive disorder that resolved without aggressive intervention. Adjustment disorders, lik e demoralization, are precipitated by a stressor or stressors that overwhelm th e individual's capacity to cope.

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Demoralization and Change 16 Table 2 Comparison of the Diagnostic Criteria for Depression and Demoralization Depression Demoralization depressed mood most of the day, nearly every day, as indicated by either subjective report (e.g. feels sad or empty) or observation made by others Markedly diminished interest or pleasure in all or almost all activities most of the day, nearly every day Significant weight loss when not dieting or weight gain or decreased appetite nearly every day Insomnia or hypersomnia Psychomotor agitation or retardation nearly every day Fatigue or loss of energy every day Feelings or worthlessness or excessive or inappropriate guilt Diminished ability to think or concentrate or indecisiveness nearly every day Recurrent thoughts of death, recurrent suicidal ideation without a suicidal plan or a suicide attempt or a specific plan for committing suicide Five or more of the criteria must be meet during the same two week period and represent a change from previous functioning and at lest one of the symptoms must be criteria 1 or 2 Affective symptoms of existential distress, including hopelessness or loss of meaning and purpose in life Cognitive attitudes of pessimism, helplessness, sense of being trapped personal failure or a lack of a worthwhile future Conative absence of drive or motivation to cope differently Associated features of social alienation or isolation and lack of support Allowing for fluctuation in emotional intensity these phenomenon persist across more that two weeks A major depressive episode or other psychiatric disorder is not present as the primary condition The most apparent differences between the tw o concepts lie in the premorbid personality of the individual and the experience of subjec tive incompetence. Factors that render a person more susceptible to an adjustment disorder include intellectual impairments that negatively impact the learning of coping skills, rigidity in personality style that isolated the person from peer support or loss of a parent during infancy (Kaplan, Sadock & Grebb, 1994). Subjective incompetence, the hallmark of demoralization, o ccurs when an individual experiences a stressor that disconfirms their assumptions and expectan cies about themselves and others (de Figueiredo,

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Demoralization and Change 17 1982). The stressor threatens the person’s self estee m and leads them to question their capacity to cope. If social supports are inadequate and the in dividual is unable to "check their reality" or validate their experience with peer s they become demoralized. A review of the diagnostic criteria for adjustment disorder and demoralization reveals less specific affective symptoms in adjustment disorder and no sense of personalization that occurs with demoralization. Refer to Table 3 for a comparison of the diagnostic criteria that delineate adjustment disorders from depression. Having determined what demoralization is not it is now important to determine exactly what it is by defining the concept and offering a model of the interaction of the composite variables. Demoralization As proposed in deFiguiredo’s 1992 work demoralization occurs when a person experiences a disconfirming event or stressor in the presence of inadequate social bonds. The person's self-schema is challenge d and without the buffering effect of social support a sense of subjective incompetence evolves and the individual becomes demoralized. Social Support Social support serves as an emotional buffer and safety net during time of stress. It has been described as social therapy for life's incongruities, a safe haven and a network of others who accept us complete with our imperfections (Moss, 1974). The adequacy of an individual’s support system is subjective. What may be adequa te for one is insufficient for another and what may be sufficient in one circumstance ma y seem inadequate when stressors become overwhelming or chronic.

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Demoralization and Change 18 Table 3 Comparison of the Diagnostic Criteria for Adjustment Disorder and Demoralization Adjustment Disorder Demoralization The development of emotional or behavioral symptoms in response to an identifiable stressor(s) occurring within 3 months of the onset of the stressor. These symptoms or behaviors are clinically significant as evidenced by either of the following: a. marked distress in excess of what would be expected from exposure to the stressor b. significant impairment in social or occupational functioning The stress-related disturbance does not meet the criteria for another specific Axis I disorder and is not merely an exacerbation of a preexisting axis I or II disorder The symptoms do not represent bereavement Once the stressor or its consequences has terminated the symptoms do not persist for more than an additional 6 months. Affective symptoms of existential distress, including hopelessness or loss of meaning and purpose in life Cognitive attitudes of pessimism, helplessness, sense of being trapped personal failure or a lack of a worthwhile future Conative absence of drive or motivation to cope differently Associated features of social alienation or isolation and lack of support Allowing for fluctuation in emotional intensity these phenomenon persist across more that two weeks A major depressive episode or other psychiatric disorder is not present as the primary condition Stress It is useful to consider Cohen and Wills’ (1985) definition and description of stress. Stress arises when one appraises a situation as threatening or otherwise demanding and believes that it is important to respond, but does not ha ve sufficient coping resources to effect an appropriate response. Feelings of helplessness increase with the individual’s subjective inability to cope. If the person has a self-schema of co mpetence and the stress disconfirms that selfperception then self-esteem may be damaged or lost (de Figueiredo, 1982).

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Demoralization and Change 19 Subjective Incompetence Subjective incompetence occurs when one's self-concept is challenged by a disconfirming event. This discomfirmation engenders feelings of confusion, helplessness, anxiety, uncertainty and social estrangement. As a result of inadequate social bonds the individual has insufficient resources and opportunities to challenge this self perceived failure. When challenged by a new stressor, the individual lo ses the capacity to act at some minimal level according to some internalized standard (de Fi gueiredo, 1982). Subjective incompetence accounts for the inability to anticipate pl easure because the individual can no longer see a way out of his or her dilemma. Figure 1 depicts the proposed model of demo ralization in which stress and inadequate social supports interact in the presence of f eelings of subjective incompetence and result in demoralization. The model shows that perceived stress in the presen ces of inadequate social supports in a subject with a sense of subjective incompetence results in demoralization. Subjective Incompetence Stress Inadequate Social Supports Demoralization Fig. 1 Proposed Model of Demoralization

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Demoralization and Change 20 Summary In reviewing the literature on demoralization, conceptual and methodological difficulties become apparent. The first is the lack of a consensus in the terminology surrounding and the definition of demoralization. Too often the term is used inconsistently or terms such as grief reaction, minor depression, and reactive depression are substituted within the same article. The component variables of demoralization are not clea rly labeled. The lack of a consistent clear definition and a working model of demoraliza tion have hampered the development of a measurement instrument. The instruments that ar e currently available include questions specific to depression, lack sufficient items for subjectiv e incompetence and do not take into account the effect of social support. Using De Figueiredo's (1982) concept of subjective incompetence and the diagnostic criteria for demoralization proposed by Kissane a nd Clarke (2001) the above model is proposed to combine features of measurement instruments for the three variables in order to develop a working instrument to measure demoralization. If, as Post (1992) predicts, affective disorder s that occur under stress potentially plant the seeds for future depression, then early, focused, intervention at the beginning of the process may offset the effect or mitigate the outcome. Nursing is in a particularly germane position to intervene. The contact that nurses have with patients provides the opportunity to assess social supports, coping skills, stressors and feelings of subjective incompetence. The therapeutic relationship that is an integral part of nursi ng care of a patient is an appropriate arena for cognitive therapy. Understanding the components of demoralization may facilitate future research and focused intervention. De Figueiredo (personal communication, Ma rch 29, 2000) developed the Subjective Incompetence Scale (SIS). The first phase of this study was undertaken to validate the SIS. The second phase used the SIS, along with other well established instruments measuring social support and perceived stress, to determine if demo ralization could be used to predict stage of

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Demoralization and Change 21 change in a sample of patients with colorectal or gastrointestinal cancer. Chapter three will describe the methodology for both phases.

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Demoralization and Change 22 CHAPTER THREE This chapter has two integral parts. The firs t component includes the methods for the first phase of the study. Since phase two of the study is predicated on the outco me of phase one, the results will be described in this chapte r prior to the methods for phase two. Phase One Definitions The following section describes the definitions used in phase one. Refer to the Instruments section on p. 25 for the operati onalization of these concepts. Depression Depression is defined using the criteria for a Major Depressive Episode. The patient experiences symptoms most of the day for more that two weeks at a time. One of two criteria symptoms is present, low mood or loss of interest or pleasure and four of the secondary symptoms: significant weight loss when not dieting, inso mnia or hypersomnia, psychomotor agitation or retardation, loss of energy, feelin gs of worthlessness, diminished ab ility to think or concentrate, and recurrent thoughts of death (DSM-IV 2001). In this phase of the study depression was operationalized using the Profil e of Mood States (POMS). Subjective Incompetence Subjective incompetence is a state of self-p erceived incapacity to act at some minimal level according to an internalized standard in a specific stressful situation (de Figueiredo & Frank 1982). This concept was operationalized using the Subjective Incompetency Scale (SIS) developed by de Figueiredo (2002).

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Demoralization and Change 23 Apathy Apathy is dulled emotional tone associated with detachment or indifference (Kaplan & Saddock, 1994). The diagnosis of apathy depe nds on detecting simultaneous diminution in goal related action, though and emotional responses (M arin, 1997). Apathy was operationalized with the Apathy Evaluation Scale (AES). Alexithymia Alexithymia is inability or difficulty in identifying, describing or being aware of one's emotions or moods (Kaplan & Saddock, 1994). Th e patient may have difficulty discriminating between physical sensations and emotions. Alex ithymia was operationalized using the Toronto Alexithymia Scale (TAS). Purpose of the Study de Figueiredo (1982) described subjec tive incompetence as the hallmark of demoralization. During the literature review no in struments were found that included the concept of subjective incompetence. The purpose of the st udy was to establish the psychometrics of the new scale and enhance the study of demoralization. Hypotheses Hypothesis #1 It was hypothesized that subjective incompet ence, depression, apathy and alexithymia are distinct but related variables. Bivariate analys is involved computing correlations between scores on the SIS, the POMS, the TAS and the AES. The researcher determined that the presence of a correlation ( r = 0.8) or smaller would provide support for the hypothesis that these were distinct but related variables.

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Demoralization and Change 24 Methodology Research Design The Phase One study was a descriptive corre lational design intended to determine convergent and divergent validity of the Subjec tive Incompetence Scale (SIS). Subjects were compared on measures of depression (POMS), subjective incompetence (SIS), apathy (AES) and alexithymia (TAS). Methods Patients with cancer pain who were treated in the Palliative Care Clinic at H. Lee Moffitt Cancer Center from March through August 2003 were included in the study. Data were collected through retrospective chart review. When patients re gistered to be seen in the pain clinic they are routinely given an information package to comple te prior to their appointment. The information package becomes a portion of their medical record and contains: The General Background Information (GBI), Moffitt Interdisciplinary Pa in Program (MIPP) Patient Pain Assessment Guide, the modified Brief Pain Inventory (BPI) the Profile of Mood States (POMS), Brief COPE Scale, the Subjective Incompetence Scale (CIS), the Toronto Alexithymia Scale (TAS), the Apathy Evaluation Scale (AES). The information contained in that portion of the patient's medical record was used to determine baseline a nd subsequent pain, demo ralization and affective scores in the retrospective analysis. This data was routinely collected in the patient record at the initial visit. Prior to the initiation of the study, approval was sought from the Scientific Review Board at H. Lee Moffitt Cancer Center and the Instituti onal Review Board at the University of South Florida. (See Appendix A)

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Demoralization and Change 25 Sample Criteria All patients with cancer related pain treated in the Palliative Care Clinic at H. Lee Moffitt Cancer Center from March through August 2003 who completed the data package were included in this study. Instruments Brief Pain Inventory (BPI) The purpose of the (BPI) is to assess pain in cancer and non-cancer patients by using a self administered questionnaire that measures pain at its worst, its least, average, and current level. It also uses a checklist of adjectives to ch aracterize the pain, and information is collected on the impact of treatment and the impact of pain on function (Daut, et al, 1983; McCormick et al., 1993). The majority of the instrument is scored on a 0-10 numeric rating scale for level of pain and interference with activities from no pain (0) a nd does not interfere (0) to pain as bad as you can imagine (10) and completely interferes (10). Pain is shaded on a body diagram in areas where the patient feels pain. One question on percent of pain relief with current regimen is included. The instrument is completed if there has been any pain from the current time through the last month. Pain has generally been interpreted on a 0-10 scale as follows: 0-3 (mild pain); 4-6 (moderate pain); and 7-10 (severe pain). The BPI has unde rgone validity testing through determining the relationship between pain medication use and ove rall pain ratings. The correlation between usual pain ratings and pain interference was also high ( r = .624; p = .001). Test-retest reliability revealed higher reliability when the interval was short ( r = .93 for the worst pain, r = .78 for usual pain, r = .59 for pain right now). (See Appendix I) Toronto Alexithymia Scale (TAS) The TAS (Kirkmayer & Robbins, 1993) is a self-report questionnaire that measures the ability to describe and identify feelings, the abilit y to distinguish between feelings and bodily

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Demoralization and Change 26 sensations, the tendency to daydream, and the tende ncy to exhibit externally oriented thinking. Subjects respond to TAS items (e.g., "I have fee lings that I can't quite identify") on a 5-point scale, which ranges from "Strongly Disagree" to "Strongly Agree." The TAS exhibits test-retest stability (one week r = 0.82; five week r = 0.75; Taylor et al., 1985) and construct and criterionrelated validity (Bagby, Taylor, & Atkinson, 1988; Kirkmayer & Robbins, 1993). The internal consistency of the TAS ranges from 0.68 (Kirkm ayer & Robbins, 1993) to 0.75 (Bagby, Taylor, & Atkinson, 1988). (See Appendix F) Toronto Alexithymia Scale (TAS) sample question and scoring Using the scale as a guide, indicate how much you agree or disagree with each of the following statements by checking the appropriate box. Give only one answer for each statement. I am often confused about what emotion I am feeling. 1 = strongly disagree 2 = moderately disagree 3 = neither agree or disagree 4 = moderately agree 5 = strongly agree Profile of Mood States (POMS) The POMS (McNair et al, 1992) is a 65 five-point objective rating scale that evaluates six affective states: (1) Tension-Anxiety; (2) De pression-Dejection; (3) Anger-Hostility; (4) VigorActivity; (5) Fatigue-Inertia; and (6) ConfusionBewilderment. Internal consistency among these subscales ranged from .87 to .95. Test-retest relia bility ranged from .65 to .74. (See Appendix E)

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Demoralization and Change 27 Profile of Mood States (POMS) sample question and scoring Below is a list of words that describe feelings people have. Please read each one carefully. Then CIRCLE ONE number which best describ es HOW YOU HAVE BEEN FEELING DURING THE PAST WEEK INCLUDING TODAY. Tense, Fatigue, Energetic, Helpful, etc. 0 = not at all 1 = a little 2 = moderately 3 = quite a bit 4 = extremely The Brief COPE Scale The Brief COPE Scale (Carver et al, 1989) is a 60 item scale utilizing a 5-point Likerttype answer format that allows scoring of problem -based coping. It incorporates 15 conceptually distinct scales: Active Coping, Planning, Seek ing Instrumental Social Support, Seeking Emotional Social Support, Suppression of Competing Activities, Religion, Positive Reinterpretation and Growth, Restraint Coping, Acceptance, Focus on and Venting of Emotions, Denial, Mental Disengagement, Behavior al Disengagement, Alcohol/Drug Abuse and Humor. These scales come together into three compone nt scales representing problem-based, emotionbased, and mixed coping strategies. There are two forms that may be used; situational and dispositional. The situational form was used in this study. The instrument has undergone psychometric evaluation and possesses acceptable test -retest reliability (.48. 77) for the various subscales. Internal consistency assessed by Cronb ach's alpha range from .45-92 for the various subscales. (See Appendix G)

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Demoralization and Change 28 Brief COPE Scale sample question and scoring We are interested in how people respond when they confront difficult or stressful events in their lives. This questionnaire asks you to indicate what you generally feel when you experience stressful events. Respond to each of the following items by circling one number for each, using the response choices listed. Please try to respond to each item separately in your mind from each other item. I try to get advice or help from other people about what to do. 0 = I usually don't do this at all 1 = I usually do this a little bit 2 = I usually do this a medium amount 3 = I usually do this a lot Apathy Evaluation Scale (AES) Conceptually, apathy is defined as lack of mo tivation not attributable to diminished level of consciousness, cognitive impairment, or emoti onal distress. Operationally, the AES (Marin, Biedrzycki & Firinciogullari, 1991) treats apathy as a psychological dimension defined by simultaneous deficits in the overt behavioral, cognitive, and emotional concomitants of goaldirected behavior (Marin 1997). The AES is an 18-item instrument using a 4-point Likert-type scale (“1” = not at all; “4” = a lot). This instrume nt has been shown to ha ve validity and interrater reliability. Test–retest reliability coefficients from 0. 81 to 0.90 have been obtained. It is important to note that a high score on the apathy evaluation scale is interpreted as a lower level of apathy. (See Appendix H) Apathy Evaluation Scale (AES) sample question and scoring

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Demoralization and Change 29 Please read the items below that pertain to your interests and daily routin es. Then, check the box that most closely agrees with how characteristi cs the statement is for you. Please check only one box per item. Ratings should be based on the past 4 weeks. Getting things started on my own is important to me. 1 = not at all 2 = slightly 3 = somewhat 4 = a lot Subjective Incompetence Scale (SIS) The subjective incompetence scale is a 12item scale developed by deFiguiredo (2000) to measure the hallmark of demoralization. Items include stress evaluations, performance inadequacy and indecisiveness. This instrument has face and content validity. (See Appendix D) Subjective Incompetence Scale (SIS) sample question and scoring Below are several statements about how people feel when they experience a stressful situation. Please read each statement carefu lly and choose the numbered r esponse that best describes how you felt when you were trying to deal with your diagnosis. Were you able to plan and initiate con certed action as well as you thought you could? 0 = none of the time 1 = a little bit of the time 2 = a good bit of the time 3 = most of the time 4 = all of the time

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Demoralization and Change 30 Informed Consent Since the study was a retrospective chart review and patient identification was not included in the collected information an exempt status was approved by the Institutional Review Board (IRB). (See Appendix A) Data Collection During the period from March through August 2003, all patients meeting the study’s inclusion criteria of cancer pain who were treated in the Palliative Care Clinic at Moffitt Cancer Center were identified using palliative care service records. The researcher briefly reviewed the medical records of all potential study participants for obvious exclusion criteria. If no exclusion criteria were found, a retrospectiv e chart review was performed. Data Management An Excel database that was password protect ed was used to track survey response, maximize efficiency and minimize the cost of data collection. Each chart was assigned a unique identifier. The researcher entered the data into the excel sheet and imported it into a SPSS spreadsheet for analysis. Missing Data Any missing item in a multiple item scale could significantly affect the data analysis. In order to maximize the usage of all collected data the following rules were used to deal with missing items. 1. In order to use any replacement score at least eighty percent of the items had to have been completed by the respondent 2. The mean of the subject's respon ses was used as a replacement score.

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Demoralization and Change 31 Data Analysis The data were entered into SPSS (version 9.0 for Windows). Univariate statistics were used to describe the sample. Bivariate correlations with two-tailed test of significance were run on all of the scales. The resulting correlation matrix was examined for similarity and differences in the Pearson product moments. Results Descriptive statistics, including univariate frequency distributions, means and standard deviations were calculated to examine the charact eristics of the sample. Of the charts reviewed, 112 met the inclusion criteria. The subjects' ages ranged from 20 to 81 years with a mean age of 52.46 (SD = 12.22). The sample was composed of 48% males and 52% females. The racial diversity of the sample reflected the population of patients treated at H. Lee Moffitt Cancer Center. Sixty-seven percent were White, 1.8% were Black and the remaining 4.5% were Hispanic and other minorities. Nearly 26% (25.9%) of the respondents chose not to answer the ethnicity question. The reliabilities of the scales were examined to determine the internal consistency at the time of administration of the questionnaires. In ternal consistency assessed by Cronbach's alpha were as follows: SIS .92, POMS .89, TAS.81, Cope.75 and AES.83. The values of the reliability estimates ranged from .75 to .92 indicating sufficien t reliability to continue with the analysis of the data. The scales were recoded according to instructions. Means were inserted for missing values at 80% in order to maximize the available data. To assess convergent and divergent validity of the SIS, the Pearson correlation coefficients were examined between the subjec tive incompetence scale, the full scales and the subscales for direction and level of significance. The SIS was compared to the Brief Cope, TAS, AES, and the POMS. There was a weak but si gnificant relationship with the Brief Cope r = .195 (p=.03). There was a weak and signi ficant relationship with the TAS, r = .296 (p= .002) and a moderate negative and significan t relationship with the AES, r = -.425 (p<.001). It is important to

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Demoralization and Change 32 note that higher scores on the AES indicate lower levels of apathy. There was a strong and significant correlation with the POMS r = .714 (p<.001). For the subscale of the Brief Cope that pertains to aviodant coping strategies a moderate and significant relationship was found r = .531(p<. 001). The Apathy Evaluation Scale is divide d into subscales that reflect a deficit in the areas of behavioral (AESBEH), cognitive (AESC OG) and emotional (AESEMT) concomitants of goal-directed behavior. The findings for the AES subscales were AESBEH -.376 (p<.001), AESCOG r = -.396 (p<.001) and AESEMT r = -.216(p=.02). The POMS examines the mood states of Tension-Anxiety, Depression-Dej ection, Anger-Hostility, Vigor-Activity, FatigueInertia, and Confusion-Bewilderment. For the POMS subscales the findings were TensionAnxiety r = .295 (p =.002), Depression-Dejection r =.720 (p<.001), Anger-Hostility r =.667 (p<. 001), Fatigue-Inertia r = .667 (p<.001), Vigor-Activity r = -.598 (p<. 001), ConfusionBewilderment r = .243 (p = .01) (See Table 4). Discussion The twelve-item Subjective Incompetence Scal e examined in this study demonstrated strong internal consistency (.92) and strong indices of being a reliable and valid measure of subjective incompetence. As exp ected there was a weak relationship in a positive direction with pain and confusion, a moderate and positive relationship with a voidant coping, and a strong and positive relationship depression, anger and fa tigue. There was a moderate and negative correlation with apathy which was also in th e direction expected. The relationship with depression ( r =.720; p<.001) demonstrated that subjective incompetence and depression share 52% unique variance. The controversial concept of distinct but overlapping constructs was addressed with a review of literature in the area. That constructs may be distinct but rela ted has been discussed in the psychology literature. The concern that constructs with modera te to large correlations might not be distinct

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Demoralization and Change 33 Table 4 Pearson correlations between the Subjective Inco mpetence Scale (SIS) and related variables. Variables SIS DEP PAIN COPE AES ANG FAT CON AVOID SIS 1.000 DEP .720 .000 1.000 PAIN .240 .011 .262 .005 1.000 COPE .195 .039 .106 .226 .138 .144 1.000 AES -.425 .000 -.483 .000 -.066 .487 .259 .006 1.000 ANG .667 .000 .737 .000 .137 .151 .165 .081 -.349 .000 1.000 FAT .691 .000 .861 .000 .294 .002 .113 .236 -.415 .000 .726 .000 1.000 CON .243 .010 .469 .000 .257 .006 .006 .950 -.159 .095 .259 .000 .524 .000 1.000 AVOID .531 .000 .525 .000 .253 .007 .450 .000 -.241 .010 .376 .000 .362 .000 .251 .008 1.000 Note: Table abbreviations are Subjective Incompetence Scale (SIS), Depression (DEP), Pain (PAIN), Brief COPE (COPE), Apathy Evaluation Scale (AES), Anger (ANG), Fatigue (FAT), and Confusion (CON). was addressed during the development of the Tor onto Alexithymia Scale (TAS) that was used in this study. Alexithymia measured with the TA S and depression operationalized with the Beck Depression Inventory showed a moderately high correlation ( r =.60, n=81, p = .001) in an undergraduate student population. Investigations in abstinent alcoholics, substance abusers and medical students demonstrated similar correlations. A study using the statistical method of factor analysis yielded a four-factor solution with virtually no overlap of the factor loadings on the respective constructs (Parker, Bagby & Taylor, 19 91). This method has since been used to clarify

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Demoralization and Change 34 the distinction between similar constructs of anxiety and de pression (Endler, Macrodimitris, 2003) and depression and alexithymia (Hintikka, Ho nkalampi, Lehtonen, & Viinamaki, (2001). Further testing of the SIS was carried out in phase two of this study. Phase Two Once reliability and validity had been establis hed for the Subjective Incompetence Scale the application for phase two of the study was sen t to the Scientific Review Committee (SRC) of H. Lee Moffitt Cancer Center. Following the recei pt of the letter of approval from the SRC an application for the study was sent to the Instituti onal Review Board of the University of South Florida. Once the study was approved by the IRB (Appendix B), data collection was started. The intent of the second study was to determine if leve l of demoralization could be used to predict the stage of change (SOC) according to the Transt heroretical Theory of Change (TCC). The study was guided by the logic model depicted in Figure 2. Stage of Change Alcohol Use Depression Inadequate Social Support Subjective Incompetence Stress Appraisal Demoralization Figure 2 Logic Model for Predicting Stage of Change from Level of Demoralization

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Demoralization and Change 35 The logic model depicts the interactions between alcohol, the three components of demoralization, depression and stage of change. De moralization is seen as a mediating variable between alcohol and stage of change. Depression w as assessed as a moderate in the relationship. Definitions Alcohol Abuse A maladaptive pattern of alcohol use leading to clinically significant impairment or distress as manifested by one or more of th e following symptoms occurring within a twelve month period: recurrent alcohol use resulting in a fa ilure to fulfill major role obligations at work, school or home, recurrent alcohol use in situati ons in which it is physically hazardous, recurrent alcohol related legal problems, con tinued alcohol use despite having persistent or recurrent social or interpersonal problems caused by or exacerbated by the effects of alcohol (DSM-IV, 2001). Alcohol abuse was operationalized using the patie nt's self-report and the Structured Clinical Interview for DSM-IV-TR (SCID) Alcohol Module. Depression Depression is defined using the criteria for a Major Depressive Episode. The patient experiences symptoms most of the day for more that two weeks at a time. One of two criteria symptoms is present, low mood or loss of interest or pleasure and four of the secondary symptoms: significant weight loss when not dieting, insomnia or hyperso mnia, psychomotor agitation or retardation, loss of energy, feelings of worthlessnes s, diminished ability to think or concentrate, and recurrent thoughts of death (DSM-IV, 2001). Depr ession was operationalized in phase two of the study using the Center for Epidemiologic St udies Depression Scale (CES-D).

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Demoralization and Change 36 Inadequate Social Support Social supports are the meaningful connections that link an individual to others in their social network. They are composed of shared symbols, common sentiments and values that are dominant in that group (de Figueiredo & Frank, 19 82). Support is expressed in terms of physical and psychological comfort provided by friends and relatives in times of stress. The sense of social engagement provides a safe ground for the i ndividual to reflect on their experiences. Social support functions to give a person broader focus on a problem and positive self-image. The adequacy of an individuals' support system is sel f perceived, whereas one individual with two close friends has adequate social support another ma y need the support of ten or more friends to feel supported. Inadequate social supports put an in dividual at risk for isolation, misinterpretation of experiences and damaging assessments of their personal competence. Subjective Incompetence Subjective incompetence is a state of self-p erceived incapacity to act at some minimal level according to an internalized standard in a specific stressful situation (de Figueiredo & Frank, 1982). Distress Distress is an emotional response to a self-perceived threatening situation. It is manifested by symptoms, such as anxiety, sadn ess, discouragement, anger and resentment. Demoralization Demoralization occurs when a person experien ces a disconfirming event or stressor in the presence of inadequate social bonds. The person' s self-schema is challenged and without the buffering effect of social support a sense of subjective incompetence evolves and the individual becomes demoralized. (de Figueiredo, 1992).

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Demoralization and Change 37 Stage of Change (SOC) Stage of Change is a six-stage theory of change developed by Prochaska, Norcross and Diclemente (1992) used to guide individuals through the process of behavioral change. Precontemplation. Precontemplation is the first identified stage in the SOC. In this stage the individual is not aware that the target behavior is causing problems. Contemplation Contemplation is the second stage of the SOC in which the individual becomes aware of the target behavior and begi ns to think seriously about changing it. The transition from this stage to the next is marked by concentration on solutions to the problem behavior and on the concept of a future without the target behavior. Preparation. During this stage the individual plans to change their behavior within the next six months. They make public their intention to change and prepare for action. Individuals in this stage may still be ambivalent about changing their behavior Action. In this stage the person commits to ch ange. They take the actions that surround the change process and confront their fears and ambivalence. Maintenance. The work in this stage is the cons olidation of the previous stages and requires a strong commitment to nurture and s upport the continued effort to sustain the new behavior. Termination. The final stage of change is one in which the new behavior becomes the default behavior. Experts debate the stability of th is stage. Some believe that once this stage is completed the individual is no longer at risk for relapse; others claim that this stage continues

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Demoralization and Change 38 throughout the individual's lifetime and that there is always a risk that stressors could trigger a relapse. Purpose of the Study Diagnosis, physical illness and invasive therapies all contribute to the burden of stress experienced by oncology patients. Ongoing addic tive behaviors negatively impact chemotherapy, pain management, palliation, and end of life care. Although many patients intend to abstain from their substance of choice, acute stress in the newly abstinent patient may result in a regulation failure that initiates the patterns of behavior that reinforce negative affect and result in relapse. Demoralization plays a significant role in the pa tient's perceived inability to change addictive behaviors or in maintaining that change. The ultimate goal of this study is to enhan ce the understanding of potential psychological processes that influence alcohol-abusing cancer patients' acknowledgement of and readiness to address their addiction. This area has been neglect ed in the oncology research literature. Studying the concept of demoralization in an alcohol using cancer population as one of those psychological mechanisms will significantly advance the field a nd provide important evidence that may lead to the development of empirically based interven tions directed at improving quality of care. Interventions aimed at reducing appraised st ress, increasing social support and challenging subjective incompetence may support patients' efforts to change addictive behaviors. Hypothesis Hypothesis 1 Depression and demoralization are di stinct but related variables.

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Demoralization and Change 39 Hypothesis 2 Patients with higher levels of alcohol consumption will have higher levels of the three components of demoralization (i.e., subjective in competence, inadequate social support, and perceived stress). Hypothesis 3 Increased levels of demoralization will pred ict lower scores on Stage of Change (SOC). Methodology Research Design Phase two was a correlational study using a su rvey research design, aimed at examining the relationship between alcohol use, level of de moralization and stage of change. Subjects were compared on measures of depression (CES-D), subjective incompetence (SIS), stress appraisal (IES), social support (ISELSF) and stage of change (SOC). Methods The researcher identified potential subjects by screening the Gastrointestinal Clinic schedule. When potential subjects registered th ey were approached in the waiting area and offered the opportunity to participate in the study. In order to assure that the clinic flow was not interrupted the subjects were taken to a consu lt room, the informed consent and HIPAA (Health Insurance Portability and Accountability Act, 1996) papers were signed and the Structured Clinical Interview for DSM-IV-TR (SCID) modules were completed. Permission for use of SCID Research Modules was sought (Appendix K). The su bjects were then given the survey package, with a pencil enclosed, in a return-mailing enve lope. Many subjects completed the survey while waiting for their appointments and returned them to the research member.

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Demoralization and Change 40 Sample Criteria The sample for this dissertation research consisted of 62 subjects recruited from three gastrointestinal clinics at Moffitt Cancer Center The sample included both men and women of a range of ethnic backgrounds that reflected the patient population at Moffitt Cancer Center, who met the following criteria: 1. Between 20 and 90 years of age 2. A diagnosis of colorectal or gastrointestinal cancer 3. Able to read and understand English Individuals, who were near to end of life, as defined by hospice admission, were excluded. Power Analysis The number of subjects was determined using st atistical power analysis. With an alpha of .05 assuming a medium effect size ( r = 25) and power of .80 the number of subjects required was a total of 120. When data had been gath ered and analyzed on sixty-one subjects the regression model produced a change in R2 = .273, F (3,53)= 3.049, p =.036 and the data collection was discontinued. Instruments Variables measured included: the individuals demographic characteristics, level of alcohol consumption (SCID Alcohol Module and pa tient's self-report), level of depression (CESD, SCID Mood Module), perceived stress (Impact of Events Scale, ECOG-PSR), social support (Interpersonal Social Evaluation List), and stage of change (Stage of Change Assessment for Alcohol). The six questionnaires and the demogr aphics data form requi red approximately 30-45 minutes to complete.

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Demoralization and Change 41 The Structured Clinical Int erview for DSM-IV-TR (SCID) The Structured Clinical Interview for DSM-IV -TR (SCID) is a semi-structured diagnostic interview designed to assist clinicians, research ers, and trainees in making reliable DSM-IV psychiatric diagnoses. For the purpose of this study, the Mood and Alcohol modules were used in the initial interview of the subject. (See Appendices L and M) Center for Epidemiologic Studies Depression Scale (CES-D) The CES-D (Radloff, 1977) is a 20-item self-report screening measure developed by the National Institute of Mental Health (NIMH) for assessing the frequency of depressive mood and symptoms during the past week. The respondent selec ts one of four encoded choices: (less than 1 day = 0; 1 to 2 days = 1; 3 to 4 days = 2; and 5 to 7 days = 3). The scale includes four reverse scored items phrased in a non-depressive directi on. A total score indicative of the level of depression symptoms is the sum of the 20 weight ed responses (Radloff, 1977). In the general population, a cutpoint score of 16 or greater suggests a high level of depressive symptoms. The CES-D has well-established normative, reliability and validity data [inter-item reliability estimates (.80s to .90s), test-retest reliability coe fficients (.40s to .70s), and correlations to the BDI (> .80). (See Appendix J) Center for Epidemiologic Studies Depression Scale (CES-D) sample question and scoring Fill in the number for each statement which best describes how often you felt or behaved this way – DURING THE PAST WEEK. I was bothered by things that usually don’t bother me. 0 = none of the time 1 = a little of the time 2 = occasionally

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Demoralization and Change 42 3 = all of the time Impact of Events Scale (IES) The IES (Horowitz, Wilner, & Alvarez, 1979) is a broadly applicable self-report measure designed to assess current subjective distress for any specific life event. It is a 15-item questionnaire evaluating experiences of avoidance a nd intrusion, which attempts to "reflect the intensity of the post-traumatic phenomena". Bo th the intrusion and avoidance scales have displayed acceptable reliability (alpha of 79 and .82, respectively). (See Appendix N) Impact Events Scale (IES) sample question and scoring Below is a list of comments made by people about st ressful events. For each item, fill in the circle that indicates how frequently the comments were true for you. I had waves of strong feelings about it. 0 = not at all 1 = rarely 2 = sometimes 3 = often Subjective Incompetence Scale (SIS) The Subjective Incompetence Scale (de Figueire do, 1982) is a twelve-item scale that was piloted in Phase One for use in this dissertation. It had face validity, reliability with a Cronbach's alpha of .92. (See Appendix D) Subjective Incompetence Scale (SIS) sample question and scoring

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Demoralization and Change 43 Below are several statements about how people feel when they experience a stressful situation. Please read each statement carefu lly and choose the numbered r esponse that best describes how you felt when you were trying to deal with your diagnosis. Were you able to plan and initiate con certed action as well as you thought you could? 0 = none of the time 1 = a little bit of the time 2 = a good bit of the time 3 = most of the time 4 = all of the time Eastern Cooperative Oncology Group Performance Status Rating (ECOG) The ECOG (Zubrod, et al. 1960) is one item using a 5-point Likert-type format that measures functional status from "0-fully ambulator y with no symptoms" to "4-spending 100% of time in bed." It is one of the most commonly used measures of functional status on the oncology literature. It has been shown to have accepta ble validity and reliability. (See Appendix O) Eastern Cooperative Oncology Group Performance Status Rating (ECOG) sample question and scoring Please fill in the circle next to the number th at describes your current level of activity. Capable of only limited self care, confined to bed or chair more than 50% of waking hours. 0 = fully active 1 = physically restricted but ambulatory 2 = ambulatory and capable of self care 3 = limited self care; confined to bed 50%

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Demoralization and Change 44 4 = completely disabled Stages of Change Assessment for Alcohol ( SOC) The Stages of Change Assessment for Alc ohol is a six-item questionnaire developed by Laforge et.al. (1998) to determine which stage of change an individual is currently in regarding alcohol related behaviors. (See Appendix Q) Stage of Change (SOC) sample question and scoring Select the single item that best describes you. In the last month have you had 5 or more drinks in a row? (Females use 4 or more drinks in a row) Yes, and I do not intend to stop drinking 5 or more drinks in a row. 1 = precontemplation 2 = contemplation 3 = preparation 4 = action 5 = maintenance 6 = termination Marlowe-Crowne Social Desirability Scale (MC) The Marlowe-Crowne Social Desirability Scale (M-C 20) (Crowne & Marlowe, 1960) is a 20-item true-false scale that is commonly used to measure defensiveness. It asks the respondent about common negative traits (e.g., jealousy) an d positive characteristics of unusual levels of responsibility and general virtue. Th e items were chosen to be unrelated to psychopathology. The MC has good internal consistency (KR-20 = 0. 88) and test-retest reliability (r = .89). (See Appendix R)

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Demoralization and Change 45 Marlowe-Crowne Social Desirability Scale (M-C 20) sample question and scoring Listed below are a number of statements concer ning personal attitudes and traits. Read each item and fill in T for true and F for false to indicate how each statement applies to you. I'm always willing to admit it when I make a mistake. 0 = false 1 = true ISELSF (Interpersonal Social Evaluation List-Short Form) The 40-item ISEL (Cohen, Mermelst ein, Kamarck & Hoberman, 1985) has four sub-scales, each intended to measure the ava ilability of a different type of social support: tangible, concerning the provision of material aid; appraisal, the belief that one has people to turn to for advice on one's problems; self-esteem, the belief that one's status is equal to that of friends; and belonging, concerning access to people with whom one can engage in activities. Across several studies, alpha coefficients for the four subscales have ranged from .62 (self-esteem) to .82 (appraisal), and two-day test-retest reliability coe fficients have ranged from .67 (belonging) to .84 (appraisal). (See Appendix P) Interpersonal Social Evaluation List – Short Form (ISELSF) sample question and scoring This scale is made up of a list of statements, each of which may or may not be true about you. Please read each statement, then fill in the circle that best d escribes how true or false that statement is about you. If I were sick, I would have trouble finding someone to help me with my daily chores. 1 = completely false 2 = somewhat false

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Demoralization and Change 46 3 = somewhat true 4 = completely true Informed Consent Prior to enrollment, the purpose of the stud y, voluntary participation, benefits and potential risks were verbally described to potentia l subjects by the researcher. They were also given a proper copy of the informed con sent that contained contact information. (See Appendix S) Research Authorization Prior to enrollment in the study the Health Information Portability and Accountability Act document was explained to potential subjects. Th ey were informed of the measures taken to protect their privacy and given a hard copy of the Research Authorization document / HIPAA document. (See Appendix T) Data Collection The study sample consisted of patients with a diagnosis of gastrointestinal (GI) or colorectal (CR) cancer from three gastrointestinal clinics at Moffitt Cancer Center. During the period from August 2003 through February 2004, all patients meeting the study’s inclusion criteria were approached and invited to participat e. A member of the study team reviewed the informed consent and HIPAA documents with them, interviewed them using the Mood and Alcohol SCID and gave them a self addressed e nvelope that contained the study surveys. The subject had the option of completing the surveys wh ile in the clinic or returning them by mail.

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Demoralization and Change 47 Data Management In order to ensure confidentiality a passwor d protected Excel spreadsheet was used to track survey response, maximize efficiency and mini mize the cost of data collection. Each subject was assigned a unique identifier. Data was collect ed on Teleform and entered into an Excel spreadsheet. It was then imported into an SPSS pr ogram and descriptive statistics were used to describe the characteristics of the sample. The data were examined for data entry accuracy, distribution and outliers. Missing Data Any missing data in a multiple item scale can have a significant effect on data analysis. The scoring of the CES-D, IES, ECOG, IES, ISEL and the SOC is the summation of the instruments items. Therefore, missing data were replaced with a mean of at least 80% of valid items For example the missing data of the ISEL coul d be replaced when at least twelve of fifteen items were answered. Data Analysis Hypothesis #1. Depression and demoralization are distinct but related variables. The relationship between depression and demoralization was assessed by examining the correlation between depression and the three components of demoralization (i.e., subjective incompetence, stress appraisal, inadequate social suppor t). It was hypothesized that depression and demoralization are distinct but related variab les. Univariate analysis involved computing correlations between scores on the CES-D, SIS, and the scores for the various measures of perceived stress and social support (IES and ISEL). The authors determined that presence of a moderate correlation ( r < 0.8) would provide support for the hypothesis.

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Demoralization and Change 48 Hypothesis # 2. Patients with higher levels of al cohol consumption will have higher levels of the three components of demoralization (i.e., subjective incompetence, inadequate social support, and perceived stress). The extent of the relationship between alcohol use and the components of demoralization were determined by examining the correlations of alcohol use with scores on the three components of demoralization. It is also suggested that there would be a social desirability bias in self-report of alcohol use. To determine the extent of the relationship between alcohol use and the components of demoralizati on, Pearson product moment correlations were calculated using the alcohol use question, SIS, IES, and ISELSF. To determine the impact of social desirability on self report of alcohol in this population, a Pearson product moment correlation was calculated using the alcohol use question (Drinkday) and the Marlowe-Crowne. Hypothesis #3. Increased levels of demoralization will predict lower scores on Stage of Change (SOC). The relative importance of depression and the three components of demoralization as predictors of stage of change was assessed by regressing the stage of change scores on the four variables. The importance of depression and the construct of demoralization as predictors of stage of change were determined through a multiple hierarchical regression analysis. Pearson product moment correlations were perfo rmed on the demographic and medical variables with stage of change. Those demographic a nd medical variables that were found to be significantly correlated to stage of change or were integral parts of the model were entered into the first step of the hierarchical regression equa tion. The next regression e quation consisted of the significant demographic and medical variables and depression (i.e., CES-D) that were forced into the first step. This determined the amount of va riance in stage of change for which depression is responsible above and beyond that responsible by the demographic and medical variables. The three components of demoralization (i.e., subjective incompetence, stress appraisal, inadequate social support) were then allowed to enter in th e third step of the regression equation in order to determine the amount of variance in stage of ch ange for which demoralization was responsible.

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Demoralization and Change 49 The author determined that a R2 > 0.06 would support the hypothesis that demoralization serves as an independent predictor of stage of change. The results of the data analysis for the sec ond phase of the study are presented in Chapter Four.

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Demoralization and Change 50 CHAPTER FOUR Results Descriptive Statistics Descriptive statistics, including univariate frequency distributions, means and standard deviations were calculated to examine the char acteristics of the study sample for phase two. A total of 91 subjects were approached to partic ipate in the study. Of that number, 11 (12 %) subjects refused citing pain, or concern that th eir appointment with the physician might be delayed, 4 (5 %) withdrew from the study, 1 (1%) deceased, 9 (10 %) did not return their packages and 71 (78 %) packages were completed a nd returned. Of those that withdrew from the study the majority cited worsening illness as the reason. Twenty-seven (38%) of the potential participants were female and 62 (62%) were male. Their ages ra nged from 28 to 85 with a mean age of 61years (SD=13.47). Racial diversity w as not well represented in the sample. Of the potential participants 6 (7%) were Hispanic, 1 (1 %) was Asian, 3 (3%) were Black and 80 (89%) were White. This was consistent with th e population served by the cancer center. The data collection was conducted from A ugust 5, 2003 through February 12, 2004. Table 5 is a comparison of the demographics for those with alcohol abuse (+ETOH), those without alcohol abuse (-ETOH), those with depr ession (+Depression), those without depression (Depression) and those who were approached a nd declined to participate in the study. Univariate analysis The reliability of the scales was examined to determ ine the internal consistency of the mean of the items on each scale at the time of administrati on of the questionnaire. Internal consistency coefficient assessed by Cronbach's alpha were as follows Subjective Incompetence Scale (SIS) .80, Impact of Events scale (IES) .91, Interpersonal Social Evaluation List Short Form (ISELSF) .81, Center for Epidemiologic Studies Depression Scale ( CES-D) .77. The values of the reliability estimates ranged from .75 to .92 indicating sufficien t reliability to continue with the analysis of

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Demoralization and Change 51 the data. The scales were recoded according to scoring instructions. Missing values were dealt with by inserting mean scores in scales where subject s had answered at least eighty percent of the questions in the scale in order to maximize the available data. Table 5 Comparison of Respondents on Alcohol & Depression Screens to Subjects that Refused. +ETOH -ETOH +Depression -Depression Refused Mean Age 59 63 62 62 59 Ethnicity White 91% 90% 100% 88% 80% Black 0% 5% 0% 4% 0% Hi spanic 9% 5% 0% 8% 10% Asian 0% 0% 0% 0% 10% Gender Male 78% 55% 31% 69% 30% Female 22% 45% 69% 31% 70% Cancer Gastric 4.3% 10% 0% 8% 10% Colon 39.1% 43% 56% 42% 20% Rectal 47.8% 32% 31% 34% 60% Pancreatic 4.3% 12% 13% 12% 10% Liver 4.3% 3% 0% 4% 0% Hypothesis Testing Hypothesis #1 It was hypothesized that depression and demoralization are distinct but related variables. The Logic Model of Demoralization and Stage of Change (Figure 2) was used to guide the analysis and hypothesis testing. The relati onship between depression and demoralization was assessed by examining the correlation between depr ession measured by Center for Epidemiologic Studies Depression Scale (CES-D) and the three components of demoralization Subjective incompetence Scale (SIS), Impact of Events (I ES), and the Interpersonal Social Evaluation List (ISELSF). A total of 71 individuals had valid score s on the variables for depression and the three components of demoralization. IES (.188 p = .117) was slightly but not significantly correlated

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Demoralization and Change 52 with CES-D. The [(SIS), (.226 p = .058)] and th e (ISELSF), (-.242, p = .042)] were slightly and significantly correlated with the (CES-D ) It was noted that the correlation between the SIS and the CES-D were much lower than the correlati on between the SIS and the depression/dejection sub-scale on the Profile of Mood States in phase one, despite the fact that both scales measure depression. This issue will be discussed in the inte rpretation section on p.59. This hypothesis was supported. Hypothesis #2 It was hypothesized that those patients with higher levels of alc ohol consumption would have higher levels of the three components of demoralization. The extent of the relationship between alcohol use and the components of demo ralization was determined by examining the correlations of alcohol use with scores on demo ralization. Current alcohol use (Drinkdays) was not correlated with subjective incompetence (S IS)(-.024 ,p=.842), social support (ISELSF) (-.117, p=.329) or perceived stress (IES)(.115,p=.341). When none of the correlations were significant, a secondary analysis of the means of the components of demoralization on the SCID Alcohol Module confirmed these results. This hypothesis was not supported. The researcher suspected that the correlation between levels of alcohol use (Drinkdays) and the components of demoralization (SIS, IES, and ISELSF) was so low because subjects did not report their alcohol consumption accurately due to social desirability bias. To determine the impact of social desirability on self-report of al cohol use in this population, a Pearson product moment correlation was calculated using Alc ohol (Drinkdays) and the Marlowe-Crowne (MC20). Of 71 subjects only 63 subjects answered the alcohol use question. In order to maximize the data available the group mean was inserted for the subjects who did not respond to the alcohol use question. The report of alcohol use was sli ghtly but significantly correlated with social desirability (-.275, p=.020). This indicates that th ere was a social desirability bias in the reporting of alcohol use. Further discussion of this r esult can be found in the interpretation section.

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Demoralization and Change 53 Hypothesis #3 It was hypothesized that increased levels of demoralization would predict lower scores on Stage of Change (SOC). The means of the co mponents of demoralization were compared on Stage of Change (See Table 6). Table 6: Means of Components of Demora lization by Stage of Change. SOCIESSISISELSF 121.75012.50049.000 239.00014.00044.000 412.7866.00056.000 517.91511.95053.603 610.2349.98953.381 Note: Table abbreviations are Stage of Change (SOC), Impact of Events Scale (IES), Subjective Incompetence Scale (SIS), and Interpersonal Social Evaluation List-Short Form (ISELSF). The Impact of Events Scale was used to operationalize perceived stress. As expected subjects in the precontemplation stage had lower levels of perceived stress than those in the contemplation stage. Subjects in precontemplati on are oblivious to their addictive behavior and therefore it is not perceived as stressful. Higher str ess levels were associated with stage two of the stage of contemplation. As subjects become aware of the impact of their addictions and begin considering change their perceived level of stress increases. There were no subjects in the preparation stage. Lower levels of perceived stress were associated with the action stage as the subject actively engaged in change. Increased levels of stress were associated with the maintenance stage which is supported in the literatu re. As patients come to grips with no longer using alcohol to cope and before alternate coping skills are stabilized they may experience higher

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Demoralization and Change 54 levels of perceived stress. The stage of termina tion had the lowest mean level of perceived stress as would be expected in subjects who had resolv ed their addictions. All of the means supported the literature on the stage of change. The fluctu ations in scores on the SIS followed the same pattern as those on the IES. This supported the idea that levels of subjective incompetence would be high in the precontemplation stage when a subject was actively drinking. Those scores would be expected to increase as the individual became aware of their addiction and began to consider change. When the patients are actively engaged in changing their addictive behavior they may feel more confident. As they try to stabilize their new behavior their subjective incompetence level increases slightly as th eir resolve to remain sober is tested. Finally as the patient’s behavior pattern stabilizes and they no longer are engaged in change, their level of subjective incompetence is at its lowest. These findings reflected the expected associ ation between subjective incompetence and stage of change. Social support was operationalized with the Interpersonal Social Evaluation List (ISELSF). The means in the stage of precontempl ation were higher than those in the second stage. This may mean that those subjects actively drinking felt the support of their drinking peers. Social support scores were lower in the contem plation stage which may be associated with a change in peer group. In the action stage (stage four) higher perceived levels of social support might be associated with a new support group. Stag es five and six reflect very similar scores on the social support instrument. This may indicate that their new social networ k has stabilized and they have adjusted to the lifestyle change. All of these mean s supported the expected patterns. The Pearson correlations between component s of demoralization and related medical variables were examined (See Table 7). There was a slight correlation between Interpersonal Social Evaluation List (ISELSF) and Stage of Change (SOC) in a positive direction, which indicated that those in earlier stages of change had lower levels of social support. There was a moderate and significant correlation in a negative direction between the Impact of Events Scale

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Demoralization and Change 55 (IES) and SOC. Increased stress was associated w ith lower scores on SOC. There was a slight correlation between the Subjective Incompetence Scal e (SIS) and the SOC in a negative direction. Increased levels of subjective incompetence were slightly associated with lower scores on SOC. There were slight correlations between SOC and scores on depression and age. Those who were in the earlier stages of change expressed more depressive features and older subjects tended to be in earlier stages of cha nge. Years of education were slightly correlated with stage of change suggesting that educati on may facilitate movement through the stages. Table 7 Pearson Correlations Between Components of Demo ralization and Related Medical Variables. Variables ISELSF IES SIS DEP AGE YRED SOC DRKDY ISELSF 1.000 IES -.028 .415 1.000 SIS -.147 .129 .418 .000 1.000 DEP -.227 .039 .215 .048 .167 .099 1.000 AGE .023 .431 -.375 .001 -.448 .000 -.202 .060 1.000 YRED .205 .056 .048 .358 .124 .171 -.181 .082 -.055 .337 1.000 SOC .150 .124 -.302 .009 -.097 .229 .182 .081 .130 .159 .219 .045 1.000 DRKDY -.160 .109 .104 .214 -.046 .362 .068 .301 -.169 .096 -.086 .255 -.142 .137 1.000 Note: Table abbreviations are Interpersonal Social Evaluation List-Short Form (ISELSF), ), Impact of Events Scale (IES), Subjective In competence Scale (SIS), Depression (DEP), Age (AGE), Years of Education (YRED), Stage of Change (SOC), and Drinks per Day (DRKDY).

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Demoralization and Change 56 Increased alcohol consumption was slightly co rrelated with stage of change in a negative direction. Those with ongoing alcohol consumpti on were in earlier stages of change. All of these correlations were in the directions predicted hence a multiple regression was run in order to further explain these relationships. The relative importance of depression and the three components of demoralization as predictors of stage of change (SOC) were assessed by regressing the SOC scores on the four variables (CES-D, IES, SIS, and ISELSF). Sixtynine subjects responded to the Stage of Change (SOC) question (1 = precontemplation, 2 = contemplation 3 = preparation, 4 = action, 5 = maintenance, 6 = termination) and the mean score of the group was 5.04 with a standard deviation of 1.24. Of the group, four were in the precontemplation stage; one was in contemplation; one was in preparation; two were in the action stage; 35 were in the maintenance stage and the remaining 26 considered themselves to be in the termination stage. The importance of depression and the construct of demoralizati on as predictors of stage of change were determined through a multiple hierarchical regression analysis. A 2 step multiple regression was employed to determine if addition of information regarding social support (ISELSF), perceived stress (IES) and subjective incompetence (SIS) improved prediction of stage of change beyond th at afforded by differences in depression (CESD), age (AGE), years of education (EDU) and alcohol use (ETOH). Analysis was preformed using SPSS REGRESSION and SPSS FREQUENCIES for evaluations of assumptions. Multivariate outliers were sought using subject identification as part of an SPSS REGRESSION run in which the Mahalanobis distance of each ca se to the centriod was computed and the ten cases with the largest distance were printe d. The critical value of chi-square ( 2) at =. 001 for 5 df was 20.52 and none of the cases exceeded that value. Subjects with incomplete data were eliminated and the result was sixty-one cases. After step 1with depression (CES-D), age (AGE ), years of education (EDU), alcohol use (ETOH) in the equation R2 = .15, F (4,56)= 2.43, p =.058. After step 2, with social support

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Demoralization and Change 57 (ISELSF), perceived stress (IES) and subjective inco mpetence (SIS) added to prediction of stage of change, produced a change in R2 = .273, F (3,53)= 3.049, p =.036. The addition of social support (ISELSF), perceived stress (IES) and subjective incompetence (SIS) resulted in a significant increment in R2 The whole model produced R2 =.284, F (7,53)= 2.847, p =.013 which explained a significant portion of the variance in stage of change. Table 8 displays the unstandardized regression coefficients ( B ), the standard error of B (SE B) and the standardized regression coefficient ( ). Table 8 Summary of Hierarchical Regression Analysis for Variables Predicting Stage of Change Variables B SE B Depression .044 .016 .360* Education .087 .041 .266* Age .005 .010 .073 Alcohol Use -.028 .051 -.069 Stress -.030 .011 -.358* Social Support .025 .020 .156 Subjective Incompetence .002 .026 .012 Note R2 =.148 for step 1; R2 = .125 for step 2 *p<.05. Summary The data supported the hypotheses that that depressi on and demoralization are distinct but related variables and that increased levels of demoralization would predict lower scores on Stage of Change (SOC). The data did not support the hypoth esis that patients with higher levels of alcohol

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Demoralization and Change 58 consumption would have higher leve ls of the three components of demoralization. The results and implications for practice and research are discussed in Chapter Five.

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Demoralization and Change 59 CHAPTER FIVE Conclusion, Limitations and Implications for Practice and Future Research Introduction This chapter focuses on the interpretation, implications, limitations, discussion and conclusions related to the results obtained from th is study. Limitations of the study are posited with possible solutions for alleviation. Interpretation In the case of hypothesis one, that depression and demoralization are distinct but related variables, the relationship between depression and demoralization was assessed by examining the correlation between depression and the three co mponents of demoralization. Depression and two of the three components of demoralization we re slightly and significantly correlated, Interpersonal Social Evaluation List Short Form (ISELSF) (-.242, p=.042) and Subjective Incompetence Scale (SIS) (.226, p=.058) in the di rection predicted. The researcher concluded that depression and demoralization are distinct but relate d variables. It was noted that the correlation between the SIS and the CES-D was much lower than the correlation between the SIS and the depression/dejection subscale on the Profile of M ood States in phase one, despite the fact that both scales measure depression. This may reflect the differences between the scales. The POMS is not limited to depression but measures a varied of mood states and the sub-scale measures depression and dejection. The POMS is a simplistic word association scale that asks subjects to rate how much they experienced a mood state described by a single word. The CES-D asks the subject to rate their emotional experience using a sentence format (i.e., "I was bothered by things that usually don't bother me"). The higher corre lation with the POMS may have reflected the difference in the two subject samples. Patients in the Pain and Palliative Care Clinic may be sensitized to their feelings of depression sin ce they are assessed for depression at each visit

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Demoralization and Change 60 whereas those in the Gastrointestinal clinic are referred to an out-patient psychiatrist if they report depression. Since all three components of demora lization were assessed in phase two, it would have been appropriate to use the same measurem ent for depression in both phases. The consistent use of the POMS would have allowed for a comparison of the correlations among the three components of demoralization in different popul ations. On the other hand, assuming the trends found on the CES-D were to continue in the direction indicated, statistical significance might be obtained by including additional participants. With regards to hypothesis two, it was hypothesized that those patients with higher levels of alcohol consumpti on would have higher levels of the three components of demoralization. The correlations did not support th is hypothesis and the trends did not indicate that an increase in the number of participants w ould likely render a significant difference in the outcome. A second analysis supported these results. The correlation of the numbers of drinks per day (Drinkday) and the Marlowe-Crowne was significant (-.275, p=.020). This indicates that there was a social desirability bias in reporting of alcohol use (those that drank more tended to report less accurately and in a more socially desi rable way). The existence of a social desirability bias was supported by the fact that only sixty-three subjects answered the drinks per day question as compared to seventy-one respon ses to the majority of other questions. Furthermore, there was a discrepancy found when examining the respon ses on the SCID Alcohol module. Twenty-three (28% ) subjects screened positive for alcohol abuse on the SCID Alcohol questionnaire, while forty-six subjects (65%) acknowledged current alcohol use. This may have been a factor of the face to face interview. The difference might also be attributed to survey format. The question about how many alcoholic beverages are consumed a day was worded in two tenses" did you or do you" in order to illicit information from those who have stopped drinking alcoholic beverages. The resulting ambiguity may have accounted for some response bias. However, even taking into account possible bias the data did not support this hypothesis. A number of explanations were possible. The sample contained few subjects in the precontemplation (4) or contemplation stages

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Demoralization and Change 61 (1). This may have been a factor of having b een in treatment for their medical diagnosis. Some physicians educate patients rega rding the impact of alcohol use on their medical conditions. Patients may also change their lifestyle when they are diagnosed with a life threatening illness in order to improve their chance of recovery. Ma ny of these patients were being treated with chemotherapy and radiation and the associated nausea and vomiting c ould have discouraged alcohol intake. On the other hand patients who are actively drinking may not feel demoralized. Since alcohol is often consumed to alter mood state those patients actively drinking may feel more confident and less demoralized. Hypothesis three involved assessing the relative importance of depression and the three components of demoralization as predictors of stag e of change by regressing the stage of change scores on the four variables. The findings, were statistically significant R2 =.284, F (7, 53) = 2.847, p =.013 and indicated that levels of demora lization can be used to predict Stage of Change. These findings will be discussed further in the section on Limitations and Implications for Practice. Limitations There were several limitations to this st udy. Between Aug 2003 and February 2004 there was a change in the physicians in the Gastroint estinal (GI) Clinic. This had implications for the study. The director of the GI clinic, a physic ian who had been a member of the research team, moved out of the area. His support had lent weight to the study activities. When a new physician arrived to take his place he was introduced to th e study team. There was a period of time before the new physician developed confidence that the st udy team would not interrupt the workflow of his clinic. Despite verbal expressions of support of the study some of the physicians would not allow their patient to be approached prior to their visit. Patients approached as they left the clinic were reluctant to stay long enough to have the study explained to them. Several attempts were made to rectify the situation, w ithout improvement. In the future it would be an advantage to have

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Demoralization and Change 62 the clinic director support the study. To increase accrual it was suggested th at a letter be sent from the primary investigator notifying the potential par ticipants of the study and its risks and benefits. Although this might have increased enrollment it w ould not have decreased the resistance within the clinic itself. A second limitation was the lack of a call b ack schedule during the initial stage of the study. This was due in part to the investig ator's inexperience and reluctance to pressure participants to return survey p ackages. Later in the study the par ticipants were informed at the time of contact that if their package had not b een returned within two weeks the interviewer would contact them to determine if they needed a second package or if they wished to withdraw. This approach met with a positive resp onse and the return rate improved. In the development of the study the research er had to weigh the amount of information required against the subject burden. Initially it a ppeared that the package would take thirty to forty-five minutes to complete. After several s ubjects were enrolled the researchers found that the time to complete the package was fifteen to twenty minutes. The respondent burden in this medically compromised population had been one of the factors that determined the number of instruments included in the study. As a result of the concern that too many instruments would negatively impact the accrual rate and quality of the returned data, fewer instruments were included in the package. Only a single measur e for each item was collected in phase one. A second measure for depression, apathy, and alexith ymia would have enhanced the assessment of convergent and divergent validity by allowing for the use of the multi-trait-multi-method assessment of convergent and divergent validity. The instrument used to measure Stage of Change (SOC) was developed by Laforge, Maddock, & Rossi (1998) and was tested in a college age population. It was chosen since it was the only available instrument to measure stage of change in alcohol use. In retrospect the instrument could have been adjusted to reflect the current definition of excessive alcohol use in an adult population as described by the American Medical Association. The question should have

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Demoralization and Change 63 asked about three drinks a day for men and one drink a day for women. Framing the question in this manner might have given a more accurate asse ssment of stage of change in this population. Although the General Background Information (GBI) which was used to collect demographic information was helpful, the ambi guity in the question's wording made data collection and entry less than optimal. For exam ple the question on alcohol use intended to determine past or present use was worded “how many alcoholic beverages do/did you typically consume each day?" There was no way to determin e if the number of drinks entered in response to the question was in the present or past tense. The use of Teleform to enter data was not as effective as the researchers expected it to be. Many entries required correction and the export process became time consuming. It became apparent during the interviews th at the amount of social support in the cancer population was for the most part substantial. In time of a medical crisis families may come together to support the cancer patient. This phe nomenon of increased social support may have impacted outcomes on the ISELSF. Implications for Practice This study demonstrated that many of the pa tients in the gastrointestinal (GI) clinic had underlying problems with alcohol. When the stud y was initially discussed with the oncologist in the GI clinic they were aware of the litera ture on the relationship between alcohol and gastrointestinal cancers. They expressed the opini on that there was likely a relationship between past alcohol use and colorectal and gastrointes tinal cancers. What they were not aware of and what became apparent during the study, was that many of the patients in the GI clinic continued to use alcohol or had only recently discontinued the use of alcohol. The implication of these findings is that patients in the GI clinic would benefit from screening for alcohol abuse when they are initially seen in the clinic. Once patients' patte rn of alcohol use was established they could be offered information on the impact of ongoing use of alcohol on chemotherapy, pain treatment and

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Demoralization and Change 64 palliative care. Patients identified as having alc ohol abuse or dependency should be offered treatment resources. The literature review revealed that patient s with ongoing alcohol abuse and dependency are at greater risk for developing alcohol w ithdrawal and delirium following surgery. Those patients identified with ongoing alcohol problems should be detoxified prior to admission for surgery. Benzodiazepines are frequently used fo r detoxification and some surgeons have expressed concern regarding their use during the postoperative period. The suggested alternative is the use of an alcohol drip during the pre a nd postoperative period. This intervention is an effective means of preventing alcohol withdrawal and delirium while the patient is in hospital. The underlying assumption is that patients with ongoing alcohol problems will resume their alcohol consumption following discharge. However, a patient debilitated by surgery and house bound may not have access to sufficient supplies of alcohol at home to prevent withdrawal. Patients in this situation are at risk for untreated alcohol withdrawal, delirium, seizure and death. From a clinical perspective this study empha sizes the need for alcohol assessment of all patients admitted to hospital. Education and suppor t should be offered for any patient identified with alcohol abuse or dependency. Demoralized patients should be offered treatment that effectively addresses each of the components of their problem. By definition subjective incompetence occurs when one's self-concept is challenged by a disconfirming event. This disconfirmation engenders feelings of confusion, helplessness, anxiety, uncertainty and social estrangement. As a result of inadequate social bonds the individual has insufficient resources and opportunities to challenge this self perceived fa ilure. When challenged by a new stressor, the individual loses the capacity to act at some minimal level according to some internalized standard. Since subjective incompetence appears to be a cognitive distortion it might best be addressed with cognitive behavioral therapy that challenges the patient’s misperception of selfcapacity. Offering that type of therapy in a group setting might increase the patient's social support and buffer them against further stressors.

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Demoralization and Change 65 Future Research The operationalization of demoralization was achieved by using three separate instruments, the Subjective Incomp etence Scale, the Impact of Events Scale and the Interpersonal Social Evaluation List-Short Form. When the th ree instruments were combined they included a total of forty-two items which made the inst rument cumbersome. The researcher proposes that future research include a principle component anal ysis aimed at reducing the number of items to only those that most effectiv ely measured the concept. Secondly a factor analysis should be done with a measure of depression and demoralization to support the idea that th e constructs are distinct but related. Since the study findings were hampered by the limited number of precontemplators a sample of subjects more likely to be in the precontempl ation phase should be done. The researcher suggests a sample from a general medical practice would be appropriate. This study documents the initial attempt at developing an instrument to measure demoralization. The results of phase one suggest th at demoralization is distinct but related to depression. This may support Rickleman's (2002) th eory that demoralization is a precursor of depression and can be conceptualized on a conti nuum of mood disorders. Phase two of the study supports the idea that a patient's level of demoraliza tion is indicative of his or her stage of change. The concept of demoralization appears to be an effective means to frame the experience that impacts individuals attempting to change addictiv e behaviors. As the patient advances through change, he or she becomes less demoralized. This predictive relationship indicates that interventions aimed at reducing levels of demo ralization may help a patient change addictive behavior. These studies document the initial attempt at developing an instrument to measure demoralization. The concept appears to be an effective means to frame the experience that impacts individuals attempting to change addictiv e behaviors. Further exploration of the concept is warranted.

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Demoralization and Change 72 APPENDICES

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Demoralization and Change 85 Appendix F TAS Name: ___________________________________________ Date: ____/____/______ Rater: ___________________________________________ Using the scale provided as a guide, indicate how much you agree or disagree with each of the following statements by checking the appropri ate box. Give only one answer for each statement: St rongly Disagree, Moderately Disagree, Neither Disagree Nor Ag ree, Moderately Agree, Strongly Agree. Neither Strongly Moderately Disagree Moderately Strongly Disagree Disagree Nor Agree Agree 1. When I cry I always know why. 2. Daydreaming is a waste of time. 3. I wish I were not so shy. 4. I am often confused about what emotion I am feeling. 5. I often daydream about the future. 6. I seem to make friends as easily as others do. 7. Knowing the answers to problems is more important than knowing the reasons for the answers. 8. It is difficult for me to find the right words for my feelings. 9. I like to let people know where I stand on things.

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Demoralization and Change 86 Appendix F continued Neither Strongly Moderately Disagree Moderately Strongly Disagree Disagree Nor Agree Agree Agree 10. I have physical sensations that even doctors don’t understand. 11. It’s not enough for me that something gets the job done; I need to know why and how it works. 12. I’m able to describe My feelings easily. 13. I prefer to analyze problems rather than just describe them. 14. When I am upset, I don’t know if I am sad, frightened, or angry. 15. I use my imagination a great deal. I spend much time daydreaming whenever I have nothing else to do. 16. I am often puzzled by sensations in my body. 17. I daydream rarely. 18. I prefer to just let things happen rather than to understand why they turned out that way. 19. I have feelings that I can’t quite identify.

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Demoralization and Change 87 Appendix F continued Neither Strongly Moderately Disagree Moderately Strongly Disagree Disagree Nor Agree Agree Agree 20. Being in touch with emotions is essential 21. I find it hard to describe how I feel about people. 22. People tell me to describe my feelings more. 23. One should look for deeper explanations. 24. I don’t know what’s going on inside me. 25. I often don’t know why I am angry.

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Demoralization and Change 88 Appendix G The Brief COPE

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Demoralization and Change 94 Appendix K SCID CentralBiometrics Research Department New York State Psychiatric Institute 1051 Riverside Drive -Unit 60 New York, NY 10032 Telephone: 212-543-5524 FAX: 212-543-5525 e-mail: mbf2@columbia.edu Michael B. First, MD (Editor, SCID Web page) Miriam Gibbon, MSW (Co-ed itor, SCID Web page) Robert L. Spitzer, MD (Director, Biometrics Research) Janet B. W. Williams, DSW (D eputy Director, Biometrics Research)Phone: 212-543-5524 EMAll..: mbf2@columbia.edu FAX: 212-543-5525MemorandumDATE: July 3, 2003 TO: Users of Research Version of SCill-I FROM: Biometrics Research Department of New York State Psychiatri c RE: Permission to make photocopies of the SCID. The Research Version of the SCID is dist ributed as a single-sided master copy. The Biometrics Research Department of New York State Psychiatric In stitute, the developer of the SCID, hereby grants permission to any investigator doing research funded by non-for-profit institutions (e.g., NIMH, NARS AD, Veteran's Administration) to make as many photocopies as they need-of th e entire document or of any modules. For research conducted by or funded by commercial enterprises (e.g. pharmaceutical companies), there is a licensing fee for the use of the SCID, depending upon the number of subjects to be entered in a study. Pl ease contact Biometrics Research (212-543-5524) for additional information. http://cumc.columbia.edu /dept/scid/permform.htm 2/27/2004

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Demoralization and Change 121 Appendix R M-C 20 Listed below are a number of statements concer ning personal attitudes and traits. Read each item and circle T for true or F for false to indicate how each statement applies to you. T F 1. I'm always willing to admit it when I make a mistake. T F 2. I always try to practice what I preach. T F 3. I never resent being asked to return a favor. T F 4. I have never been irked when pe ople expressed ideas very different from my own. T F 5. I have never deliberately said something that hurt someone's feelings. T F 6. I like to gossip at times. T F 7. There have been occasions when I took advantage of someone. T F 8. I sometimes try to get even rather than forgive and forget. T F 9. At times I have really insisted on having things my own way. T F 10. There have been occasions when I felt like smashing things. T F 11. I never hesitate to go out of my way to help someone in trouble. T F 12 .I have never intensely disliked anyone. T F 13. When I don't know something I don't at all mind admitting it. T F 14. I am always courteous, even to people who are disagreeable. T F 15. I would never think of letting someone else be punished for my wrong doings. T F 16. I sometimes feel resentful when I don't get my way. T F 17. There have been times when I fe lt like rebelling against people in authority even though I knew they were right. T F 18. I can remember "playing sick" to get out of something. T F 19. There have been times when I was quite jealous of the good fortune of others. T F 20. I am sometimes irritated by people who ask favors of me.

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Demoralization and Change About the Author Cheryl Cockram is an ARNP. working in a cons ultation liaison position in the Psychosocial and Palliative Care service at Moffitt Cancer Center. She earned her AA degree in nursing at Loyalist College in Belleville, Ontario, Canada. She immi grated to Tampa Florida in 1990 to continue her education and completed a Bachelor’s Degree in Psychology at St.Leo’s University. She went on to complete a Masters Degree in A dult Psychiatric and Mental Health at the University of South Florida. Her area of interest is in psychiatry and substance abuse.