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The relationship between uncertainty in illness and anxiety in patients with cancer

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Title:
The relationship between uncertainty in illness and anxiety in patients with cancer
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Language:
English
Creator:
Vera, Naima
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University of South Florida
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Tampa, Fla
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Subjects / Keywords:
Anxiety   ( mesh )
Uncertainty   ( mesh )
Psychometrics   ( mesh )
Neoplasms -- psychology   ( mesh )
Questionnaires   ( mesh )
Clinical
Research
Unit
State
Trait
Dissertations, Academic -- Nursing -- Masters -- USF   ( lcsh )
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non-fiction   ( marcgt )

Notes

Summary:
ABSTRACT: Anxiety is a common problem for patients with cancer. Anxiety may have a negative impact on decision making and overall emotional well being of patients and may be related to the uncertainties faced by people with cancer. This study examined the relationship between uncertainty in illness and anxiety in patients with cancer. The sample consisted of 30 patients, predominantly males (n=23), being treated as outpatients in the Clinical Research Unit at a National Cancer Institute designated cancer center in Florida. After agreeing to participate, patients completed the State-Trait Anxiety Inventory as well as Mishel's Uncertainty in Illness Scale. Participants' ages ranged from 21 to 86, with a mean age of 64 years. Forty percent of the patients completed high school, 30% had some college education and almost 30% had a bachelor's degree or higher.Almost 47% of the sample had melanoma, other patients had renal cancer (n=3), or pancreatic cancer (n=2), acute myeloid leukemia (n=2), sarcoma (n=2), lung cancer (n=2), myeloma (n=2), chronic myeloid leukemia (n=1), glioblastoma (n=1), and rectal cancer (n=1). Seventy percent of the patients had stage IV disease. The results of the study showed a significant positive relationship between uncertainty and both state anxiety (r=0.52, p=0.00.) and trait anxiety (r=0.61, p=0.000). A significant positive relationship was also found between the uncertainty subscale of ambiguity and both, state anxiety (r=0.538, p=0.002) and trait anxiety (r=0.56, p=0.001). Both state anxiety (r=0.39, p=0.034) and trait anxiety (r=0.64, p=0.000) were positively related to the uncertainty subset of inconsistency. Although the sample size was small and not demographically diverse, the findings of this study are supportive of previous studies.The implications of this study in nursing are significant because they examine two emotional aspects that evidently exist among cancer patients, and that very likely cause distress to this population. The findings of this study suggest that additional focus in uncertainty and anxiety should take place in the clinical outpatient setting.
Thesis:
Thesis (M.S.)--University of South Florida, 2009.
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Includes bibliographical references.
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by Naima Vera.
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Title from PDF of title page.
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Document formatted into pages; contains 52 pages.

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aleph - 002063641
oclc - 556229783
usfldc doi - E14-SFE0003002
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The Relationship B etween Uncertainty in I llness and Anxiety in Patients W ith Cancer by Naima Vera A thesis submitted in partial fulfillment of the requirements for the degree of Master in Science College of Nursing University of South Flor ida Major Professor: Susan C. McMillan, Ph.D. Janine Overcash, Ph.D. S. Joan Gregory, Ph.D. Versie Johnson Mallard, Ph.D. Date of Approval: May 18, 2009 Keywords: Clinical Research Unit, State Trait Copyright 2009 Naima Vera

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Dedication This is dedicated to my wonderful family. To my husband Eric, thank you for your endless patience, your sincere love and for believing in me. To my parents, Manuel and Myrna, who encouraged me to pursue my dreams and gave me enough tools to achieve them. T o my siblings, Alina, Gaby and Yusef, who constantly give me energy, who fill my life with joy and laughter si nce the first day we met. Thank you all for adding so many positive things to my life.

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Acknowledgement s I would like to express my appreci ation to my professors, mentors and now friends, Dr. Susan McMillan and Dr. Cindy Tofthagen. I will always be grateful for your selflessness and for always giving me the most genuine support. A special thanks to Dr. Janine Overcash, Dr. Joan Gregory and Dr. Versie Johnson M allard for being in my committee and for your insight in uncertainty and anxiety in cancer.

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i Table of Contents List of Table s iii Abstract iv iv Chapter One : Introduction 1 Problem Statement 2 Resea rch Q uestion 3 Definition of T erms 4 Uncertainty in Illness 4 Anxiety 4 Significance to N ursing 5 Chapter Two : Review of Literature 6 Uncertainty in Illness 6 Uncertainty Throughou t the Cancer Experience 8 Ethnic Differe nces and Uncertainty 9 C ommunication 10 Anxiety 11 Summary of the Literature Reviewed 13 Implications for Nursing 15 Gaps in the Literature 15 Chapter Th ree : Methods 17 Setting and Sample 17 Instruments 18 18 State Trait Anxiety Inventory 18 Procedures 19 Data Analysis 20 Chapter Four : Results, Di scussion and Conclusions 21 Results 21 Demographic Data 21 State Trait Anxiety 2 5 Uncertainty in Illness 25 Re lationship Between Uncertainty and Anxiety 2 6

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ii Discussion 2 7 Sample 2 7 State Trait Anxiety 2 8 Uncertaint y in Illness 2 8 The Relationship B etween Uncerta inty and Anxiety 29 Implications for N ursing 30 Conclusion s 31 Re commendation for Future Research 31 References 3 3 Appendices 3 6 Appendi x A: 3 7 Appendix B: Trait Anxiety Inventory 42 Appendix C: State Anxiety Inventory 4 3 Appendix D: Letter of Approval from Moffitt 4 4 Appendix E: Letter of Approval USF Ins titutional Review Board 4 6 Appendix F : Informed Consent Form 4 8

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iii List of Table Table 1. Frequen cy and Percent of Participants by Gender 21 Table 2. Frequency and Percent of Participants by Level of Education 22 Tab le 3. Frequency and Percent of Particip ants by Diagnosis and Stage 23 Table 4. Freque ncy and Percent of Participants by Time since Diagnosis and State Anxiety, Trait Anxiety and MUIS Mean Scores and Standard Deviations by Time of Diagno sis 2 4 Table 5. Correlations of Uncertainty with Stat e and Trait Anxiety 2 5 Table 6. Correlation of Four Factors of Uncertainty and State Anxiety 2 6 T able 7. Correlation of Four Factors of Uncertainty and Trait Anxiety 27

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iv The Relatio nship B etween Uncertainty in Illness and Anxiety in Patients W ith Cancer Naima Vera ABSTRACT Anxiety is a common problem for patients with cancer. Anxiety may have a negative impact on decision making and overall emotional well being of patients and may be related to the uncertainties faced by people with cancer. This study examined the relationship between uncertainty in illness and anxiety in patients with cancer. The sample consisted of 30 patients, predominantly males (n=23), being treated as outpatient s in the C lin ical Research Unit at a National Cancer Institute designated cancer center in Florida. After agreeing to participate, patients completed the State Illness Scale. nged from 21 to 86, with a mean age of 64 years. Forty percent of the patients completed high school, 30% had some college sample had melanoma, other patients had renal cancer (n =3), or pancreatic cancer (n=2), acute myeloid l eukemia (n=2), sarcoma (n=2), lung cancer (n=2),

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v myeloma (n=2), chronic myeloid l eukemia (n=1), glioblastoma (n=1), and rectal cancer (n=1). Seventy per cent of the patients had stage IV disease. The results o f the study show ed a significant positive relationship between uncertainty and both state anxiety (r=0.52 p=0 .00.) and trait anxiety (r=0.61 p=0.000). A significant positive relationship was also found between the uncertainty subscale of ambiguity and bo th, state anxiety (r=0.538, p=0.002) and trait anxi ety (r=0.56 p=0. 001). Both state anxiety (r=0.3 9, p=0 .034) and trait anxiety (r=0.64 p=0.000) were positively related to the uncertainty subset of inconsistency. Although the sample size was small and no t demographically diverse, the findings of this study are supportive of previous studies. The implications of this study in nursing are significant because they examine two emotional aspects that evidently exist among cancer patient s and that very likely cause distress to this population. The findings of this study suggest that additional focus in uncertainty and anxiety should take place in the clinical outpatient setting.

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1 Chapter One Introduction Cancer represents the second most common cause of death in the Western world ( American Cancer Society 2008). Despite the progress in medicine, cancer is often considered a synonym of d eath, pain and suffering (Powe & Finne, 2003). Cancer is not considered a single event but a permanent condition with ongoing ambiguity, or uncertainty, delayed effects of the disease and its treatments and concurrent psychological issues (Zebrack, 2000). A diagnosis of cancer is a life changing and potentially fatal event that can be associated with feelings of uncertainty (Sh aha, Cox, Talman, & Kelly, 2008) leading to anxiety. Notions of uncertainly concerning the cancer experience have been ass ociated with anxiety (Decker et al ., 2007) in that 48% of lymphoma patients reported levels of anxiety high enough to be diagnosed wit h an anxiety disorder (Stark et al 2002). Mishel (1988) defined uncertainty in illness as the inability to determine the meaning of illness related events. Uncertainty is a component of all illness experiences and it is believed to affect psychosocial a daptation and outcomes of disease (McCormick, 2002). High levels of uncertainty are related to high emotional distress, anxiety and depression (McCormick, 2002).

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2 Anxiety can be defined as a state of uneasiness to a potential threat that is inconsistent w ith the expected events (Bay & Algase, 1999) and can be associated with feelings of fear, dread, and uneasiness (National Cancer Society, 2008). The threat of cancer may elicit this state of uneasiness. Higher anxiety levels have been found in cancer patie nts who are aware of their diagnosis compared to a group of patients without awareness (Tavoli, Mohagheghi, Montazer, Roshan, Rasool, and Omidvari, 2007). Problem Statement Defining the relationship between uncertainty and anxiety is important because it can lead to further studies that focus on the simultaneous management of uncertainty and anxiety as well as their impact on quality of life (QOL). Uncertainty remains one of the single greatest source of stress for people affected by a life threatening ill ness such as cancer (Santacroce, 2002). Stark et al. studied anxiety in 178 patients with lymphoma, renal cell carcinoma, melanoma and plasma cell dyscrasia. They found that 48% of these patients had levels of anxiety high enough to qualify for anxiety dis order According to Pitcealthy et al. (2009 ) m ost cancer patients report distress within the first year of diagnosis and up to 40% develop anxiety which impairs the quality of life for the patient. Uncertainty and anxiety are experienced by most patients with cancer due to the inability to determine the meaning of illness related events and to the potential threat that the cancer diagnosis poses. Although anxiety and

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3 uncertainty are important factors and are commonly experienced by cancer patients, little research was found during the review of literature that focused on evaluating a relationship between the two. The purpose of this study was to examine the relationship between uncertainty in illness and anxiety in patients with cancer. If a relationship be tween uncertainty and anxiety is defined, there is a possibility that decreasing uncertainty may in turn decrease anxiety. Although things may never be normal after a patient is diagnosed with cancer, oncology nurse practitioners should have effective and clear communication as a simple but successful way to reduce uncertainty, and simultaneously decrease anxiety. A relationship between uncertainty and anxiety may give rise to future research to reduce uncertainty and anxiety during all stages of cancer. R esearch Questions The following questions guided this study: 1. Is there a significant positive relationship between uncertainty and trait anxiety in outpatients in a cancer center who have been diagnosed with cancer? 2. Is there a significant positive rel ationship between uncertainty and state anxiety in outpatients in a cancer center who have been diagnosed with cancer? 3. Are there significant positive relationships between uncertainty in illness subscales and either state or trait anxiety?

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4 Definitions of Terms Uncertainty in i ll ness Uncertainty is an inability to determine meaning in illness situations (Mishel, 1988). Uncertainty in cancer is directly related to not knowing about cancer. Uncertainty is influenced by factors that change from person to person. Therefore, the definition of uncertainty in illness is individual and specific to one person. The term itself is directly related to not knowing. The concept is taken a step further when referring to uncertainty in cancer. Uncertainty remains one o f the single greatest source of stress for people affected by a life threatening illness such as cancer (Santacroce, 2002). Anxiety T wo types of anxiety have been defined; state anxiety and trait anxiety. State anxiety is a temporary condition in response to a stressful situation, like a cancer diagnosis. Trait anxiety is defined as a more general and long standing quality (Spielberger, 1983) Anxiety is a reaction to stress due to the thought of negative consequences of the illness. Anxiety is a threat to homeostasis, a presence of impending change, a sense of loss, uneasiness or increased apprehension. Anxiety has been defined as a heightened state of uneasiness to a potential threat that is inconsistent with the expected events and results when there is a mismatch between the next likely event and the actual event (Bay & Algase, 1999) Anxiety can interfere with personal growth, physical health and behavior. Clinical expression of anxiety may include increasing tension, worry, fright,

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5 trembling, quiver ing voice, arousal and jitters (Bay & Algase, 1999). Many times the source of anxiety is unknown; however in cancer, the source of anxiety is related to the impact of the diagnosis in one s life. Significance to Nursing This study may contribute to the future enhancement of the clinical treatment of anxiety in cancer patients in any stage of disease and treatment modality. In addition this study may contribute to the limited research in uncertainty and anxiety of cancer patients. Good clinical guideli nes are currently lacking in the identification and treatment of uncertainty, and early recognition may help reduce the associated anxiety. Enhanced awareness of the potential problems associated with the uncertainty frequently experienced by cancer patien ts may motivate nurses to develop better management strategies.

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6 Chapter Two Review of Literature This chapter presents the background for the study. A review of relevant research literature in uncertainty and anxiety is presented. This is followed by a summary and implications for nursing. Finally gaps in the literature are presented. Uncertainty in Illness Uncertainty in illness has been studied using several different frameworks. Mishel (1981) has widely studied the concept of uncertainty in canc er using the Mishel s Uncertainty in Illness Scale (MUIS) to measure uncertainty. The scale presents four major factors which are: ambiguity, unpredictability, complexity and inconsistencies. Many have studied the concept of uncertainty in cancer and have based their studies on Mishel s Theory of Uncertainty in Illness. Mishel s model suggests coping is initiated to reduce uncertainty especia lly when danger is perceived. In addition coping is initiated to maintain the belief in a positive outcome when un certainty is appraised as an opportunity. A study conducted by Wallace et al., (2007) explored the three main domains established by Mishel, which include: uncertainty about disease and treatment, danger appraisal and opportunity appraisal The investi gators used older men with prostate cancer undergoing watchful waiting as their population.

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7 The defining features of uncertainty about disease and treatment were found to be: few signals to monitor progression of disease, lack of physical discomforts made it hard to believe that the cancer was there, lack of symptoms created uncertainty as cancer was perceived as related to pain and suffering, physician unable to tell how fast tumors grow, elevated PSA levels do not always indicate cancer, stable levels do not always indicate stable disease. Danger appraisals were found to be: treatment decision making was found as an appraisal of danger, lack of clear guideline and multiple alternatives, the newness of watchful waiting made them wonder if it was aggressive enough. Interestingly, Wallace s (2007) study also noted that while uncertainty was consistently present in all patients after making the decision of watchful waiting, this offered the opportunity to manage their uncertainty by continuing to work, self ca ring, keeping options open, using alternative medicine and praying, imagining cancer as small, by envisioning the smallness of their localized tumor, watch and wait provided an option to aggressive therapy or surgery that many times lead to poor outcomes a nd poor quality of life. Mishel s re conceptualization of Uncertainty in Illness Theory has also been used to study and explain the relationship between uncertainty and post traumatic stress syndrome. Lee (2006) conducted a study to examine the relationshi p between uncertainty and post traumatic stress syndrome in young adults, survivors of childhood cancer. It was found that post traumatic stress syndrome develops and is adopted by the survivors of childhood cancer as a

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8 maladaptive strategy to manage uncer tainty when they lack of sufficient resources for coping with the challenges of survivorship. Furthermore, avoidance and arousal, which are two symptom clusters of post traumatic stress disorder, were found to be related to uncertainty. Once again the stud y suggests that providing health related information appropriately (without ambiguity, low complexity, and no unpredictably) could potentially help alleviate or decrease uncertainty in cancer survivors. Uncertainty throughout the cancer e xperience Uncer tainty does not diminish beyond diagnosis; therefore, uncertainty should continue to be addressed even throughout survivorship (Decker, Haase & Bell, 2007). In their study, in canc er patients. They found that there are no significant differences in the overall level of uncertainty among the newly diagnosed, diagnosed 1 to 4 years and diagnosed more than 5 years. However, newly diagnosed patients scored high uncertainty for future pa in, unpredictable illness course, staff responsibility, and concerns about caring for themselves. Those diagnosed 1 4 years and 5 or more years, had high uncertainty about the multiple meanings of communication from the doctors. Those diagnosed 5 years o r more had higher uncertainty about knowing what was wrong, had more unanswered questions and had higher uncertainty regarding the probability of successful treatment. Their study emphasizes the importance of certainty to provide open communication beyond

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9 diagnosis and the cancer treatment phase. In addition, results suggests that the type of information needed changes during each stage of the cancer experience. Mishel, along with Gil, Belyea, Germino, Porter, and Clayton (2006) report ed significant ben efit in providing cognitive behavioral strategies and self help manuals to increase recurrence free breast cance r survivor knowledge. Mishel et al. (2006) conducted a study that found that even after 10 months of no interventions, these women were able to integrate the changes and skill gained during intervention even without the direct guidance. This same patient sample was used to gather data regarding triggers of uncertainty (memories, feelings, concerns) about cancer recurrence and physical symptoms from treatment side effects. The study found that hearing about someone else s cancer and pains, was the most frequent trigger of uncertainty. It was also found that in both Caucasian and African Americans, the most frequent symptoms linked to long term treatment side effects were fatigue, joint stiffness, and pain. In 2006 Lee studied post traumatic stress disorder and uncertainty. This study found that there is a relationship between post traumatic stress disorder (PTSD) and uncertainty suggesting t hat cancer survivors adopt PTSD as a way to manage uncertainty. Ethnic d ifferences and uncertainty Ethnic differences were also evaluated in research Caucasian women were found to be more likely than African American women to report that their fears of recurrence were triggered by hearing about someone else s cancer while for African American the most

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10 common trigger was new symptoms. The study also concluded that uncertainty remains after cancer diagnosis and treatment and that these survivors experienc ed triggers of uncertainty on a regular basis, with an average o f 2 triggers per month (Gil, et al., 2006). The study helps to better understand that during cancer survivorship uncertainty should still be identified, monitored and managed along with emot ional distress. Giving specific information about symptoms that are commonly experienced as late effects of treatment is important in reducing anxiety in patients. Education, counseling and support should be offered to help patients cope with unexpected en counters that trigger uncertainty of recurrence as these triggers are often found in daily occurrences. Germino et al., (2007) found that ethnic differences exist in the relationship of uncertainty to a number of quality of life and coping variables. In a study of female b reast cancer survivors (Gil et al., 2006), the investigators found that the women were not only benefiting from being able to identify and use information about their illness, but they were also able to integrate this information without direct guidance. Communication In a study by Clayton, Mishel and Belyea (2006) the concept of uncertainty and how communication with health care providers may help women reduce uncertainty and improve both emotional and cognitive well being was investig ated. A positive association was found between health care provider communication and thoughts of recurrence. More than half of the

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11 sample indicated that they were unable to achieve their desired decision making role with hea lth care providers An interest ing finding that health care providers might be offering information that contributes to thoughts of recurrence is a possibility raised by the study. Anxiety in Cancer According to Stark et al. (2002) anxiety is a response to a threat and given that can cer is a threat, many patients with canc er experience anxiety. Stark et al. (2002) studied anxiety in 178 patients with lymphoma, renal cell carcinoma, melanoma and plasma cell dyscrasia. They found that 48% of these patients had levels of anxiety high eno ugh to qualify for anxiety disorder. This study also found that the most accurate screening questionnaires for anxiety include the State Trait Anxiety Inventory and the Hospital Anxiety and Depression Scale. Symptoms of anxiety are common among cancer pati ents and therefore, it is a ppropriate to screen for anxiety and understand the impact of anxiety in cancer Tavoli et al. (2007) found that psychological distress is higher in patients who are aware of their cancer diagnosis when compared to those patients who are not aware of their diagnosis. Tavioli et al. conducted a cross sectional study to examine anxiety in 142 patients with gastrointestinal cancer patients and investigated whether the knowledge of cancer diagnosis affects pa psychosocial status. Of these cancer patients, 52% were not aware of their diagnosis and 48% were aware of having cancer. The mean anxiety score was

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12 7.6 (SD=+/ 4.5) and 47.2 % of the patients had high anxiety score. A significant difference was not ed between those who knew their diagnosis (anxiety means score of 9.1) versus those who did not know (anxiety means score of 6.3); P <0.001. After performing regression analysis it was found that anxiety showed strong relationships with knowledge of cancer diagnosis. It is important to be aware of the role that intrusive cognition plays in anxiety and adaptation of the experience of living with a cancer diagnosis. In a study conducted by Whitaker et al. (2007) patients with cancer classified as anxious rep orted intrusive or disturbing imagery significantly more times than non anxious patients (P<0.01). Anxious patients also reported more intrusive thoughts (P<0.01) and more intrusive memories (P<0.05). No correlation was found between intrusive cognition an d disease stage (P=0.98). The study also found that intrusive imagery in these cancer patients is a factor in psychological morbidity. Patient symptom reporting is important and significant in guiding treatment and diagnosis of cancer. A study published b y Leventhal, Schmitz, Rabin, and Ward (2001) found that anxiety is positively related with vague symptom reporting and not related to concrete symptom reporting in patients und ergoing chemotherapy treatment. Th e study findings suggest that trait anxiety wa s positively related with over reporting of symptoms and supports that although trait anxious individuals pay closer attention to symptoms as they occur, the symptom reporting is often vague rather than concrete (Leventhal et al., 2001).

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13 Studies have found that psychological interventions at time of diagnosis may promote adjustment in newly diagnosed cancer patients. Pitceathly et al. ( 2008) studied 313 patients newly diagnosed with cancer. These patients were free of anxiety or depressive disorders at the time of diagnosis. The patients were separated in high risk of developing anxiety and low risk. Patients were then randomized to receive immediate psychological interventions, delayed psychological intervention or no psychological intervention. The study r eports that twelve months after intervention, patients at high risk who received intervention were less likely to develop an anxiety disorder. In the low risk group no differences were noted. Gattellari, Butow, and Tattersall (2001) studied 233 patients w ith cancer who were visiting their oncologist for first time. They found that anxiety levels significantly decreases pre consultation and post consultation when patients preferred and perceived roles matched. Nevertheless, they found that most cancer patie nts fail to achieve their desired level of involvement in their care. Their result also supported that less involvement than patient preferred appears to be more detrimental to anxiety levels than more involvement than preferred. Summary of Literature R eviewed In regard to uncertainty, the review of literature suggests that the concept of uncertainty is a dynamic one that is mostly determined by the present situation and its fa ctors (Mishel, 1981). In regard to anxiety, the literature proposes that pa tients diagnosed with cancer and aware of their disease have higher levels of

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14 anxiety (Tavoli et al., 2008). The relationship between uncertainty and anxiety was not directly addressed in the literature reviewed. Literature reviewed related to anxiety an d psychological distress in cancer patients is higher in cancer patients aware of their diagnosis (Tavoli et al., 2008). The study encourages early implementation of methods to reduce anxiety after giving a cancer diagnosis and constant assessment of anxie ty is crucial in the care of cancer patients. Whitaker et al., (2007) concluded that intrusive that intrusive cognition was most strongly associated with anxiety. The study makes providers aware of the role that intrusive cognition plays in anxiety and adaptation of the experience of living with a cancer diagnosis. In uncertainty, the literature findings focused on assessment and management of uncertainty in cancer patients. Deck er and colleges (2007) clearly suggest that uncertainty is related to quality of life and psychological health outcomes. Furthermore, their study found that uncertainty is present in all stages of illness and can be reduced using effective communication an d taking in to consideration ethnic and cultural differences. Decker and colleagues demonstrated that the degree of uncertainty changes during each stage of the cancer experience and that it continues throughout survivorship. Interestingly, Clayton et al., (2006) found that there is a possibility that healthcare providers contribute to thoughts of recurrence

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15 To identify a relationship between uncertainty and anxiety would be valuable to nursing and to cancer patients. If a positive relationship is found between the two, it would be possible to do furthe r research in the simultaneous assessment and management of both co morbidities and the impact that one has o n the other. The literature reviewed emphasized t he importance of uncertainty and anxiety in health outcomes and quality of life justifying further research in this area. Implications for Nursing The field of oncology has much to gain from further studies in uncertainty and anxiety in patients diagnose d with cancer. Ways to manage uncertainty have been thoroughly studied in many areas and stages of cancer. The studies reviewed consistently demonstrate that healthcare providers can contribute to decreasing uncertainty in our patients. For example, the da ta analyzed by Gil et al. (2006) demonstrated that a group of female breast cancer survivors were able to integrate the changes and skills gained during guided uncertainty intervention even without the direct guidance. If a positive relationship between un certainty and anxiety is defined, further research can be done in the mana gement of anxiety in oncology. In nursing, understanding the concept of uncertainty and anxiety and its possible relationship is important because proper management of these can allo w patients to participate in their decision making process participation in their care.

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16 Gaps in the Literature There is a noticeable gap in the literature regarding assessmen t and management of anxiety specifically in patients with cancer. Much is said about anxiety in general, but little is related specifically to the oncology population and healthcare providers. The current literature does have plenty of information about un certainty in illness, and specifically in cancer. The literature has studies about uncertainty in the different stages of a cancer experience; at diagnosis, during treatment and in survivorship. Studies on managing uncertainty are lacking. Finding a relat ionship between uncertainty and anxiety may be able to fill some gaps, specifically regarding anxiety and cancer. The relationship may also encourage further research in the simultaneous assessment and management of both, uncertainty and anxiety.

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17 Chapt er Three Methods A descriptive cross sectional design was used to identify the relationship between uncertainty and anxiety in patients with cancer. A literature review on uncertainty and anxiety in patients with cancer sustains the belief that a positive relationship between uncertainty and anxiety might exist. The study design, tools used, procedure and statistical analysis are discussed in this chapter. Setting and S ample The sample for this study was gathered from patients in the Clinical Research Un it (CRU) outpatient setting of a National Cancer Institute designated center in southwest Florida. Thirty patients were accrued to the study. Patients enrolled in the study met the following inclusion criteria: over eighteen years old, able to read, write and understand English, pathologically diagnosed with cancer for at least 4 w eeks prior to study enrollment as located on pathology report in patients medical record aware of cancer diagnosis for at least 4 we eks prior to study enrollment as documen t ed b medical record. The following criteria excluded patients: being an inpatient at the time of encounter, being unaware of their cancer diagnosis, having untreated and/or

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1 8 symptomatic brain metastasis or psychiatric diagnosis. Informat ion about psychiatric diagnosis was abstracted from the medical record. Instruments Mishel s Uncertainty in Illness Scale (MUIS). The Uncertainty in Illness Scale (Mishel, 1983) was used to measure uncertainty (Appendix A) The MUIS is a 33 item self admi nistered tool designed to measure acuity of uncertainty in illness. This instrument has four subscales: ambiguity or cues about the state of illness being vague and indistinct, tending to overlap (13 items, coefficient of .91), complexity or cues about tre atment and system of care are multiple, intricate and varied (7 items, coefficient alpha of .75), inconsistency or information that changes frequently or is not in accord with information previously received (5 items, coefficient alpha of .71), and unpred ictability (6 items, coefficient alpha of .70). Scores for ambiguity can range from 13 to 65. Scores for inconsistency can range from 7 to 35. Scores for complexity can range from 7 to 25. Scores for unpredictability can range from 5 to 25. To complete the questionnaire, subjects selected the degree to which they agreed or disagreed with thirty three statements related to uncertainty. Items are scored on a five point Likert type scale that ranges from strongly agree to strongly disagree The highest pos sible total score is one hundred and sixty with higher scores indicating greater levels of uncertainty. State Trait Anxiety Inventory (STAI) The State Trait Anxiety Inventory (STAI) was used to measure anxiety (Appendix A & B) It is a self administered

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19 tool that differentiates between temporary condition of anxiety (state) and a long standing anxious quality (trait). The STAI has a total of 40 questions; 20 testing state and 20 testing trait. Each question has four possible answers. Items are scored on a 4 point Likert type scale, with response going from 1 ( not at all ) to 4 ( very much so ). The highest score is 160; the lowest is 40. High scores indicate higher levels of anxiety. The alpha coefficients for the state anxiety scale ranges from 0.83 to 0.94. The trait anxiety scale has a median alpha coefficient of 0.90 (Spielberger, 1983). Procedures The study was approved by the Scientific Review Committee of the cancer center and the University of South Florida Institutional Review Board. Th e investigator identified the patients via the medical record for inclusion criteria. Once identified, patients were invited to participate and the study was explained. Patients who agreed to participate signed an informed consent form (Appendix F). The demographic dat a was retrieved via the medical record and recorded on a hard copy data form The participants complete two study questionnaires during the research encounter with the primary investigator. The research encounter required approximately 30 minutes after co nsent process. Patients were instructed that the interviews could be stopped at any time. The interviews were held in a private area in the clinical research unit. Personal identifiers were removed from all study re lated paperwork except for the informed consent form

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20 Original copies of the signed ICF and all study related paperwork are kept in the study binder and securely locked. Data Analysis The research questions that guided this study were: Is there a significant positive relationship between uncer tainty and trait anxiety in outpatients in a cancer center who have been diagnosed with cancer? Is there a significant positive relationship between uncertainty and state anxiety in outpatients in a cancer center who have been diagnosed with cancer? Are there significant positive relationships between uncertainty in illness subscales and either state or trait anxiety Descriptive statistics, including means, standard deviations, frequencies and percentages, were used to describe the patient sample. To ad dress the questions, Pearson correlation were used to determine the relationship of uncertainty and state and trait anxiety, as well as the relationship between uncertainty subscales and state and trait anxiety.

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21 Chapter Four Results, Discus sion and Conclusions This chapter presents the findings of the study to include: results, discussion of the results, implications for nursing, conclusion and suggestions for future research. Results Demographic data The sample consisted of 30 patients wit h ages ranging from 21 to 86 years, with a mean age of 64. Twenty three males participated in the study while only 7 females agreed to participate (Table 1). Table 1 Frequency and Percent of Participants by Gender Gender Frequency Percentage Female 7 23.3 Male 23 76.7 Educational background of the sample was varied. Three percent of the sample did not complete high school, 40% had a high school diploma, 30% doctor al

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22 Table 2 Frequency and Percent of Participant s by Level of Education Level of Education Frequency Percentage Some High S chool 1 3.3 High S chool Diploma 12 40.0 Some College 9 30.0 5 16 37 1 3.3 Doctorate 2 6.7 Almost 47% of the sample had melanoma, other patients had renal (n=3), pancreatic (n=2), acute myelogenous leukemia (n=2), sarcoma (n=2), lung cancer (n=2), myeloma (n=2), chronic myelogenous leukemia (n=1), gliobla stoma (n=1), and rectal cancer (n=1). Seventy per cent of the patients had stage IV disease. (Table 3)

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23 Table 3 Diagnosis Frequency Percent Melanoma 14 46.7 Renal 3 10.0 Pancreati c 2 6.7 Acute myelogenous leukemia 2 6.7 Sarcoma 2 6.7 Lung 2 6.7 Myeloma 2 6.7 Chronic myelogenous leukemia 1 3.3 Glioblastoma 1 3.3 Rectal 1 3.3 Stage I 2 0.1 III 4 0.1 IV 21 0.7 UNKNOWN 3 0.1

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24 Time since diagno sis ranged from less than 6 months to over 5 years (Table 4) Twenty percent of the patient had been diagnosed between 1 2 years from time of enrollment. Thirteen percent had been diagnosed within 6 months, and almost 17 % of the sample was diagnosed withi n 3 to 4 years. Seventeen percent of the sample was diagnosed within the last 6 months to a year. Seventeen percent of the sample was diagnosed more than five years from the time of enrollment, and only 10% of the patients were diagnosed for 2 to 3 years. Table 4 Frequ ency and Percent of Participant s Time Since Diagnosis and State Anxiety, Trait Anxiety and MUIS Mean Scores and Standard Deviations by Time of Diagnosis. Time since diagnosis Frequency (%) State Anxiety Mean (Standard Deviation) Trait Anxiety Mean (Standard Deviation) MUIS Mean (Standard Deviation) < 6 months 4 (13.3) 33.8 (12.1) 29.8 (7.4) 90.5 (13.2) 6 months to 1year 5 (16.7) 33.0 (9.9) 30.6 (8.3) 84.0 (8.9) 1 to 2 years 6 (2.0) 29.8 (10.0) 28.3 (10.6) 83.8 (11.4) 2 to 3 y ears 3 (10.0) 35.0 (7.0) 33.3 (2.5) 80.3 (6.1) 3 to 4 years 5 (16.7) 36.8 (11.3) 35.8 (9.7) 94.4 (7.6) 4 to 5 years 2 (6.7) 21.0 (1.4) 24.0 (.0) 81.5 (9.2) 5 years or more 5 (16.7) 28.6 (8.6) 33.6 (10.5) 86.0 (9.5) Total 30 (100.0) 31.8 (9.7) 31.2 (8.6 ) 86.4 (11.4)

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25 State Trait Anxiety The State Trait Anxiety Inventory was used to measure state and trait anxiety. The mean score of the state anxiety inventory was 31.8 w ith a standard deviation of 9.7 The mean score of the t rait anxiety inventory was 3 1.2 with a standard deviation of 8. 6 (Table 4). No relationship was found between anxiety and age, gender, diagnosis, stage, educational level and time since diagnosis. Nevertheless, there was a trend towards higher mean scores in state anxiety, and trait anxiety in patients diagnosed within three to fours years (Table 4). Table 5 Correlations of Uncertainty with State and Trait Anxiety R P State Anxiety 0.52 0.003 Trait Anxiety 0.61 0.000 Uncertainty in illness ess Scale was used to measure uncertainty. No significant correlation was found between uncertainty and age, gender, diagnosis, stage, educational level and time of diagnosis. Interestingly, patients diagnosed within three to four years had slightly higher mean scores on the MUIS (Table 4). The subscales ambiguity, complexity, inconsistency and unpredictability were also measured. The mean score for ambiguity was 31.1 with a standard deviation of 11.4. The mean score for complexity was 27.2, with a standar d deviation of 4.2. The mean score for inconsistency was 13.8, with a standard

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26 deviation of 4.8. Finally, the mean score for predictability was 12.3 with a standard deviation of 2.6. Relationship between uncertainty and anxiety. A significant positive rela tionship was found between ambiguity and state (r=0.53, p=0.002) and trait anxiety (r=0.56, p=0.001) (Table 6, 7 ) A significant positive relationship was also found between inconsistency and state (r=0.389, p=0.034) and trait anxiety (r=0.64, p=0.000) (Ta ble 6, 7) No relationship was found between state trait anxiety and complexity and unpredictability (Table 6 7 ) Trait anxiety was significantly higher in people with higher levels of uncertainty (r=0.61 p=0.000) (Table 5) State anxiety was also posit ively related with higher levels of anxiety (r =0.52 p=0.003) (Table 5 ) Table 6 Correlation of Four Factors of Uncertainty and State Anxiety R P Ambiguity 0.54 0.002 Complexity 0.26 0.162 Inconsistency 0.39 0.034 Unpredictability 0.07 0.716

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27 Table 7 Correlation of Four Factors of Uncertainty and Trait Anxiety R P Ambiguity 0.562 0.001 Complexity 0.298 0.109 Inconsistency 0.642 0.000 Unpredictability 0.064 0.735 Discussion Sample Participants were recruited from the Clinical Research Unit at an NCI designated cancer center. Data was collected during the month of April 2009. The lack of heterogeneity was a limitation of the sample. The majority of the sample accrued to the study had stage IV cancer and was receiving experimental therap y in the clinical research unit, in an outpatient basis. The median age was 66, and the majority of the patients completed high school. Th e sample was predominantly male and almost half of the sample was diagnosed with melanoma. Over 13% of the sample had been diagnosed within 5 months of enrollment and more than 16% were aware of their diagnosis for 5 years or longer. The results of this study cannot be generalized to other cancer patients receiving standard therapy for an early stage disease. The anxiety and u ncertainty levels of the sample being studied could largely differ from the levels

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28 of a cancer population with a better prognosis and receiving standard therapy with curative intent. Also, the sample was significantly dominated by males, so the repre sentation of females was low State Trait Anxiety In a study conducted on healthy and normal working adults (Spielberger, et al., 1983), the mean score for state anxiety was 35.7 and levels found in the present study sample were slightly lower than in healthy adults previously in patients with cancer. It is difficult to speculate reason s why anxiety level s in this study sample were lower than the one found by Spielberger in healthy adults. It is possible that this study sample, being predominant ly stage VI cancer patients, had resigned themselves to their illness and accepted it as life limiting therefore decreasin g their anxiety levels. Conversely, being in the Clinical Research Unit might have made them feel hopeful, and therefore, less anxious. Further study is needed to evaluate unmeasured variable to include unequal gender representation, spirituality and hope. Uncertainty in i llness Uncertainty scores were calculated using the four factors to include ambiguity, complexity, inconsistency and unpredictability. The total mean score for uncertainty was obtained by adding the scores of all four factors. The mean t otal score found in the study sample was 86.4 with a standard population had a total mean score of 69.46 with a standard deviation of 15.9

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29 (Mishel, 1987). This higher uncertainty me an score in the present sample may be due to the receiving of experimental treatment with little information regarding the treatment outcomes. It is possible that patients who choose experimental treatment are different from other patients in some unknown way. Perhaps, these patients feel more hopeful that experimental therapy will help, but at the same time more uncertain about it. It is also important to remark that due to the amount of intricate and varied information provided during experimental therapy one would expect that the complexity mean score of the study sample would be higher than the mean score of a generalized cancer population undergoing standard of care treatment. (25.33 with standard deviation of 5.3) comparable to the mean score found on this study (27.17 with a standard deviation of 4.202). The Relationship between Uncertainty in Illness and Anxiety The findings of this study suggest that the levels of state an d trait anxiety are higher among cancer patients with higher levels of uncertainty. This means that there is a positive relationship between uncertainty and state and trait anxiety. It is important to note that, unexpectedly trait anxiety shows a stronger relationship to uncertainty than state anxiety. However, the study sample was small and further research is needed. The results of this study also found that two out of four subcategories (factors) of uncertainty, ambiguity and inconsistency, were positi vely related to

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30 both state and trait anxiety. Both subcategories, ambiguity and inconsistency, demonstrated a stronger relationship with trait anxiety. Given that trait anxiety was found to have a stronger relationship with general uncertainty, as well as with specific factors of uncertainty (ambiguity and inconsistency), the results could suggest that patients who tend to have higher anxiety at all times (trait) may be less able to tolerate uncertainty. Nevertheless, it is state anxiety that will most lik ely be amenable to interventions by nurse practitioners. Among the cancer population multiple studies have looked at the concepts of uncertainty and anxiety. Nevertheless, the relationship between the two concepts has not been widely studied. The only rele vant study in the literature (Kaminsky, 1991) showed similar results. Implications for nursing The findings of this study have implications for nursing. Assessment of be in corporated in the clinical practice. Given that a positive relationship was found between uncertainty and anxiety, assessing uncertainty can predict the presence of higher or lower level of anxiety, and vice versa. The study supports that uncertainty and a nxiety are present in the oncology population, and may cause additional emotional distress. holistic approach in caring for patients. Research should be conducted further in the areas of uncertainty and anxiety in order to develop guidelines for effective

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31 management of uncertainty. Furthermore, studies can research the effect of proper un certainty management in anxiety and the incorporation of such managements in nursing education Conclusion Anxiety levels were found to be higher in patients with higher levels of uncertainty. The data suggests that this relationship is stronger between uncertainty and trait anxiety. Two of the four uncertainty factors, ambiguity and inconsistency, were found to be positively related to anxiety. Significant relationships between anxiety or uncertainty and age, gender, diagnosis, stage or educational level were not found. Recommendation for future research The findings of this study suggest the need for development of studies to develop evidence based clinical guidelines to better manage uncertainty and anxiety. It would also be useful to study the effects that decreasing ambiguity and inconsistency would have on anxiety levels. The study could pote ntially be replicated with a larger sample, to include inpatients and an equal sample of males and females. It would also be useful to compare two groups, one undergoing standard of care therapy versus a group on experimental therapy. Experimental interven tions to decrease ambiguity and inconsistencies could be designed and implemented to see their impact in the

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32 actual levels.

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33 References Albaugh, J. & Hacke, E. D. (2008) Measurement of quality of life in men with prostate cancer. Clinical Journal of Oncology Nursing 12(1), 81 86. American Cancer Society. (2008). Cancer Facts and Figures. Re trieved July 4, 2008, from http://www.cancer.org Bailey, D., Wallace M., & Mishel, M. (2007). Watching, waiting, and uncertainty in prostate cancer. Journal of Clinical Nursing, 16(4), 734 741. Barron, C. R. (2000). Stress, uncertainty, and health. In Hill Rice, V. (Ed.). Handbook of stress, coping, and health: Implications for nursing research, theory and practice (pp. 517 535). London: Sage publishers. Bay, E. J., & Algase, D. L. (1999). Fear and anxiety: A simult aneous concept analysis. Nursing Diagnosis, 10(3), 103 111. Carey, M. S., Bacon, M., Tu, D., Butler, L., Bezjak, A., &Stuart, G. C. The prognostic effects of performance status and quality of life scores on progression free survival and overall survival in advanced ovarian cancer. Gynecologic Oncology 108(1), 100 105. Clayton, M. F., Mishel, M., & Belyea, M. (2006). Testing a model of symptoms, communication, uncertainty, and well being, in older breast cancer survivors. Research in Nursing & Health, 29 18 uncertainty management intervention for african american and white older breast cancer survivors: 20 Months outcomes. International Journal of Behavioral Medicine, 13(4), 286 294. Decker, C. L., Hasse, J. E., & Bell, C. J. (2007). Uncertainty in adol escents and young adults with cancer. Oncology Nursing Forum, 34 (3), 681 688 Gatellari, M., Butow, P., & Tattersall, M. (2001). Sharing decisions in cancer care. Social Science Medicine, 52 (12), 1865 1878. Germino, B. B., Mishel, M. H., Belyea, M., Har ris, L., Ware, A., & Mohler, J. (1998). Uncertainty in prostate cancer. Cancer Practice. 6(2), 107 113.

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34 Gil, K., Mishel, M., Belyea, M., Germinio, B., Porter, L. S., & Clayton, M. (2006). Benefits of childhood cancer. Journal of Nursing Research, 14(2), 1 33 141. Goodman, A. & Houck, K. (2001). Anxiety and uncertainty in informed decision making. Journal of Women s Health & Gender based Medicine, 10(2), 93 94. Lee, Y. L. (2006). The relationship between uncertainty and posttraumatic stress in survivors of 39. Leventhal, H., Schmitz, M., Rabin, C., & Ward, S. (2009). Explaining retrospective reports of symptoms in pa tients undergoing chemotherapy: anxiety, initial symptom experience, and posttreatment symptoms. Annals of Oncology, 20, 928 934. McCormic k, K. M. (2002). A concept analysis of uncertainty in illness. Journal of Nursing Scholarship, 32 (2), 27 131. Mishel, M. H. (1984). Perceived uncertainty and stress in illness. Research in Nursing and Health, 7, 163 171. Mishel, M. H. (1981). The measur ement of uncertainty in illness. Nursing Research, 30, 258 263. Mishel, M. H. (1988 ). Uncertainty in illness Image: Journal of Nursing Scholarship, 20(4), 225 Mishel, M. H. (1990). Re conceptualization of the uncertainty in illness theory. Image: Jour nal of Nursing Scholarship. 22(4), 256 262. Osoba, David. (2004). The concept of quality of life in oncology. Oncology Archive, 12(13); 166 167. Owens, B. (2007). A test of the self help model and use of complementary and alternative medicine among hispa nic women during treatment for breast cancer. Oncology Nursing Forum, 34(4), E42 E50. Pitcealthy, C., Maguire, P., Fletcher, I., Parle, M.,Tomenson, B. & Creed, F. (2009). Can a brief psycholohical intervention prevent anxiety or depressive disorder in ca ncer patients? A randomized controlled trial. Annual Oncology 20 (5) 928 934.

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35 Polit, D.F. & Beck, C.T. (2008). Nursing Research; generating and assessing evidencefor nursing practice (8 th ed.) Philadelphina: Lippincott & Wilkins. Santacroce, S. (2002). Un certainty, anxiety, and symptoms of posttraumatic stress in parents of children recently diagnosed with cancer. Journal of Pediatric Oncology Nur sing, 19, 104 111. Powe B & Finne R., (2003). Cancer fatalism: the state of the science. Cancer Nursing 26 4 54 465. Santacroce, S. (2002). Uncertainty, anxiety, and symptoms of posttraumatic stress in parents of children recently diagnosed with cancer. Journal of Pediatric Oncology Nursing, 19 (3), 104 111. Shaha, M., Cox, C. L., Talma n K., & Kelly, D. (2008). Uncertainty in breast, prostate and colorectal cancer: Implication for supportive Care. Journal of Nursing Scholarship, 40 (1), 60 67. Stark, D., Kiely, M., Smith, A., Velikova, G., House, A., and Selby, P. (2002). Anxiety disorders in cancer patients: t heir nature, associations and relation to quality of life. Journal of Clinical Oncology ., 20, 3137 3148. Spielberger, C. D. (1983). STAI: Manual for the Stait Trait Anxiety Inventory. Palo Alto: Consulting Psychologists Press. Tavoli, A., Mohagheghi, M. A., Montazer, A., Roshan, Rasool, Tavoli, Z., & Omidvari, S. (2007). Anxiety and depression in patients with gastrointestinal cancer: Does knowledge of cancer diagnosis matter?. BMC Gastroenterology, 7 (28), 101 106. Wallace, M. (2005). Finding more meani ng: The antecedents of uncertainty revisited. Journal of Clinical Nursing, 14, 863 868. Wallace, M., & Mishel, M. (2007). Watching, waiting, and uncertainty in prostate cancer. Journal of Clinical Nursing, 16 734 741. Whitaker, Katriina, Brewin, C.R., & Watson, M. (2007). Intrusive cognitions and anxiety in cancer patients. Journal of Psychosomatic Research, 64, 509 517. Zebrack B (2000) Cancer survivor identity and quality of life. Cancer Pract ice, 8 238 242.

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36 A ppendices

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37 Appe ndix A : Mishel Uncertainty in Illness Scale (MUIS) MISHEL UNCERTAINTY IN ILLNESS SCALE ADULT FORM INSTRUCTIONS: Please read each statement. Take your time and think about what each statement hat most closely measures how you are feeling TODAY. If you agree with a statement, then you would mark under statement. 1. Strongly Agree Agree Undecided Disagree Strongly Di sagree (5) (4) (3) (2) (1) _______ ______ ______ ______ ______ 2. I have a lot of questions without answers. Strongly Agree Agree Undecided Disagree Strongly Disagree (5) (4) (3) (2) (1) _______ ______ ______ ______ ______ 3. I am unsure if my illness is getting better or worse. Strongly Agree Agree Undecided Disagree Strongly Disagree (5) (4) (3) (2) (1) _______ ______ ______ ______ ______ 4. It is unclear how bad my pain will be. Strongly Agree Agree Undecided Disagree Strongly Disagree (5) (4) (3) (2) (1) _______ ______ ______ ______ ______ 5. The explanations they give about my condition seem hazy to me. Strongly Agree Agree Undecided Disagree Strongly Disagree (5) (4) (3) (2) (1) _______ ______ ______ ______ _____

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38 Appendix A : Mishel Uncertainty in Illness Scale (MUIS) (Continued) 6. The purpose of each treatment is clear to me. Strongly Agree Agree Undecided Disagree Strongly Disagree (5) (4 ) (3) (2) (1) _______ ______ ______ ______ ______ 7. When I have pain, I know what this means about my condition. Strongly Agree A gree Undecided Disagree Strongly Disagree (5) (4) (3) (2) (1) _______ ______ ______ ______ ______ 8. I do not know when to expect things will be done to me. Strongly Agree Agree Undecided Disagree Strongly Disagree (5) (4) (3) (2) (1) _______ ______ ______ ______ ______ 9. My symptoms continue to change unpredictably. Strongly Agree Agree Undecided Disagree Strongly Disagree (5) (4) (3) (2) (1) _______ ______ ______ ______ ______ 10. I understand everything explained to me. Strongly Agree Agree Undecided Disagree Strongly Disagree (5) (4) (3) (2) (1) _______ ______ ______ ______ ______ 11. The doctors say things to me that could have many meanings. Strongly Agree Agree Undecided Disagree Strongly Disagree (5) (4) (3) (2) (1) _______ ______ ______ ______ ______ 12. I can predict how long my illness will last. Strongly Agree Agree Undecided Disagree Strongly Disagr ee (5) (4) (3) (2) (1) _______ ______ ______ ______ ______

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39 Appendix A : Mishel Uncertainty in Illne ss Scale (MUIS ) (Continued) 13. My treatment is too complex to figure out. Strongly Agree Agree Undecided Disagree Strongly Disagree (5) (4) (3) (2) (1) _______ ______ ______ ______ ______ 14. It is difficult to know if the treatments or medications I am getting are helping. Strongly Agree Agree Undecided Disagree Strongly Disagree (5) (4) (3) (2) (1) _______ ______ ______ ______ ______ 15. There are so many different Strongly Agree Agree Undecided Disagree Strongly Disagree (5) (4) (3) (2) ( 1) _______ ______ ______ ______ ______ 16. Because of the unpredictability of my illness, I cannot plan for the future. Strongly Agree Agree Undecided Disagree Strongly Di sagree (5) (4) (3) (2) (1) _______ ______ ______ ______ ______ 17. The course of my illness keeps changing. I hav e good and bad days. Strongly Agree Agree Undecided Disagree Strongly Disagree (5) (4) (3) (2) (1) _______ ______ ______ ______ ______ 18. Strongly Agree Agree Undecided Disagree Strongly Disagree (5) ( 4) (3) (2) (1) _______ ______ ______ ______ ______ 19. I have been given many differing opinions about what is wrong with me. Strongly Agree Agree Undecided Disagree Strongly Disagree (5) (4) (3) (2) (1) _______ ______ ______ ______ ______

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40 Appendix A : Mishel Uncertainty in Illness Scale (MUIS) (Continued) 20. It is not clear what is going to happen to me. Strongly Agree Agree Undecided Disagree Strongly Disagree (5) (4) (3) (2) (1) _______ ______ ______ ______ ______ 21. I usually know if I am going to have a good or bad day. Strongly Agree Agr ee Undecided Disagree Strongly Disagree (5) (4) (3) (2) (1) _______ ______ ______ ______ ______ 22. The results of my tests are inconsistent. Strongly Agree Agree Undecided Disagree Strongly Disagree (5) (4) (3) (2) (1) _______ ______ ______ ______ ______ 23. The effectiveness of the treatment is undetermined. Strongly Agree Agree Undecided Disagree Strongly Disagree (5) (4) (3) (2) (1) _______ ______ ______ ______ ______ 24. It is difficult to determine how long it will be before I can care for myself. Strongly Agree Agree Undecided Disagree Strongly Disagree (5) (4) (3) (2) (1) _______ ______ ______ ______ ______ 25. I can generally predict the course of my illness. Strongly Agree Agree Undecided Disagree Strongly Disagree (5) (4) (3) (2) (1) _______ ______ ______ ______ ______ 26. Because if the treatment, what I can do and cannot do keeps changing. Strongly Agree Agree Undecided Disag ree Strongly Disagree (5) (4) (3) (2) (1) _______ ______ ______ ______ ______

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41 Appendix A : Mishel Unce rtainty in Illness Scale (MUIS) (Continued) 27. Strongly Agree Agree Undecided Disagree Strongly Disagree (5) (4) (3) (2) (1) _______ ______ ______ ______ ______ 28. The treatment I am receiving has a known probability of success. Strongly Agree Agree Undecided Disagree Strongly Disagree (5) (4) (3) (2) (1) _______ ______ ______ ______ ______ 29. They have not given me a specific diagnosis. Strongly Agree Agree Undecided Disagree Strongly Disagree (5) (4) (3) (2) (1) _______ ______ ______ ______ ______ 30. My physical distress is predictable; I know when it is going to get better or worse. Strongly Agree Agree Undecided Disagree Strongly Disagree (5) (4) (3) (2) (1) _______ ______ ______ ______ ______ 31. I can depend on the nurses to be there when I need them. St rongly Agree Agree Undecided Disagree Strongly Disagree (5) (4) (3) (2) (1) _______ ______ ______ _____ ______ 32. The seriousness of my illness has been determined. Strongly Agree Agree Undecided Disagree Strongly Disagree (5) (4) (3) (2) (1) _______ ______ ______ ______ ______ 33. The doctors and nurses use everyday language so I can understand what they are saying. Strongly Agree Agree Undecid ed Disagree Strongly Disagree (5) (4) (3) (2) (1)

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42 Appendix B: State Anxiety Inventory

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43 Appendix C: Trait Anxiety Inventory

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44 Appendix D: Letter o f Approval from Moffitt Scientific Review Committee

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45 Appendix D: Letter of Approval from Moffitt Scientific Review Committee (Continued)

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46 Appendix E: Letter of Approval from USF Institutional Review Board

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47 Appendix E: Letter of Approval from US F Institutional Review Board (Continued)

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48 Appendix F: Informed Consent Form

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49 Appendix F: Informed Consent Form (Continued)

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50 Appendix F: Informed Consent Form (Continued)

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51 Appendix F: Informed Consent Form (Continued)

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52 Appendix F: Informed Consent Form (Continued)


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The relationship between uncertainty in illness and anxiety in patients with cancer
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ABSTRACT: Anxiety is a common problem for patients with cancer. Anxiety may have a negative impact on decision making and overall emotional well being of patients and may be related to the uncertainties faced by people with cancer. This study examined the relationship between uncertainty in illness and anxiety in patients with cancer. The sample consisted of 30 patients, predominantly males (n=23), being treated as outpatients in the Clinical Research Unit at a National Cancer Institute designated cancer center in Florida. After agreeing to participate, patients completed the State-Trait Anxiety Inventory as well as Mishel's Uncertainty in Illness Scale. Participants' ages ranged from 21 to 86, with a mean age of 64 years. Forty percent of the patients completed high school, 30% had some college education and almost 30% had a bachelor's degree or higher.Almost 47% of the sample had melanoma, other patients had renal cancer (n=3), or pancreatic cancer (n=2), acute myeloid leukemia (n=2), sarcoma (n=2), lung cancer (n=2), myeloma (n=2), chronic myeloid leukemia (n=1), glioblastoma (n=1), and rectal cancer (n=1). Seventy percent of the patients had stage IV disease. The results of the study showed a significant positive relationship between uncertainty and both state anxiety (r=0.52, p=0.00.) and trait anxiety (r=0.61, p=0.000). A significant positive relationship was also found between the uncertainty subscale of ambiguity and both, state anxiety (r=0.538, p=0.002) and trait anxiety (r=0.56, p=0.001). Both state anxiety (r=0.39, p=0.034) and trait anxiety (r=0.64, p=0.000) were positively related to the uncertainty subset of inconsistency. Although the sample size was small and not demographically diverse, the findings of this study are supportive of previous studies.The implications of this study in nursing are significant because they examine two emotional aspects that evidently exist among cancer patients, and that very likely cause distress to this population. The findings of this study suggest that additional focus in uncertainty and anxiety should take place in the clinical outpatient setting.
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