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COPD dyspnea management by family caregivers

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Title:
COPD dyspnea management by family caregivers
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English
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Thomas, Loris A
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University of South Florida
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Subjects / Keywords:
elderly
lung disease
symptom management
dyspnea management
caregiver
Dissertations, Academic -- Nursing -- Doctoral -- USF
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government publication (state, provincial, terriorial, dependent)   ( marcgt )
bibliography   ( marcgt )
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Summary:
ABSTRACT: An estimated 14 million people in the United States currently have chronic obstructive pulmonary disease (COPD). This nonreversible illness causes progressively decreasing airflow and is manifested by frequent episodes of acute and chronic dyspnea. The purposes of this study were: 1) to examine the relationships between mastery (MS), negative affectivity trait (NA), perceptions of patient dyspnea severity (DSI), and perceptions of which dyspnea interventions are effective (DE) among family caregiver-COPD patient dyads and 2) to examine the degree of agreement between the dyad members regarding dyspnea assessment and management. The study subjects were elderly (patients = 71.6 years, caregivers = 63.4 years), mostly women (patients = 60%, caregivers = 63.3%), Caucasian (96.7%), and patients had severe/very severe COPD (80%). No significant differences were found between family caregivers' and patients' ratings of MS, NA, DSI, or DE.The most effective dyspnea management strategies identified by both dyad members included changing activity, relaxation, inhaled medication use, and altering breathing pattern. The study conceptual model was tested to identify the interrelationships between the study variables. Significant effects in the patient model were between DSI and NA (p = 0.04), DE and gender (p = 0.04), DE and education (p = 0.015), and between DE and disease severity (p = -0.026). The caregiver model demonstrated no significant effects between the study variables. Significant effects in the dyad model were between DSI and the length of time caregiving had been provided (LOT, mean = 25.2 years) (p = 0.013), DE and DSI (p = 0.004), and between DE and LOT (p = 0.03). Gender, education, disease severity, LOT, and DSI influenced DE. Negative affectivity and LOT (mean = 25.2 years) influenced DSI.The findings of this study indicate that when the family caregiver of a patient with COPD is present, he or she is able to provide valid and reliable assessments of the patient's dyspnea severity. During acute exacerbations of dyspnea, persons with COPD are often unable to speak for themselves and these experienced family caregivers may be valuable partners with nurses and other healthcare providers to represent the patient's responses and needs.
Thesis:
Thesis (Ph.D.)--University of South Florida, 2004.
Bibliography:
Includes bibliographical references.
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Mode of access: World Wide Web.
Statement of Responsibility:
by Loris A. Thomas.
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Includes vita.
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Title from PDF of title page.
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Document formatted into pages; contains 102 pages.

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oclc - 57717592
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usfldc doi - E14-SFE0000541
usfldc handle - e14.541
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COPD Dyspnea Management by Family Caregivers by Loris A. Thomas A dissertation submitted in partial fulfillment of the requirements for the degree of Doctor of Philosophy College of Nursing University of South Florid a Major Professor: Linda E. Moody Ph.D. Susan McMillan, Ph.D. Mary Lou VanCott, Ph.D. Kathryn Hyer, Ph.D. Hossein Yarandi, Ph.D. Date of Approval: November 15, 2004 Keywords: caregiver, d yspnea management, elderly, lung disease, symptom management Copyright 2004 Loris A. Thomas

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Dedication This dissertation is dedicated to my entire family who, along with m e, believe that with God all things are possible. They always supported my efforts and believed that I would accomplish this personal goal. A special dedication goes to my husband Bryan, and daughters Morgan and Shannon; for without their unending love a nd support on a daily basis, successful completion of this doctoral degree would not have been possible.

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Acknowledgements I thank God for all of my blessings and accomplishments, including the completion of this dissertation. Romans 8:28 tells us, we know that in all things God works for the good of those who love him I would like to thank my dissertation committee for their invaluable patience, time, expertise, and support throughout this dissertation process. I greatly appreciate the mentoring of my committee chair, Dr. Linda Moody. Her extensive experience with COPD dyspnea research, research in the elderly, and her ability to guide me through the steps of the research process was extremely helpful. I would like to thank Dr. Susan McMillan, for imparting her research knowledge and practical approach to the research process during this dissertation. Thank you to Dr. Mary Lou VanCott for helping me to better understand and incorporate qualitative research methodologies in this dissertation. T hanks to Dr. Kathryn Hyer, for her sharing her knowledge of health policy in the elderly as it applies to this dissertation study patient population. Finally, thanks to Dr. Hossein Yarandi, for his support and guidance to help me to improve my understand ing of quantitative research analysis methods throughout this dissertation process. In addition, I would like to thank all of my friends and nursing colleagues, particularly Carmen and Patsy, for their ongoing encouragement throughout this endeavor. I would like to recognize two organizations that provided grant monies to assist in the completion of this dissertation; the Florida Nurses Foundation, who awarded me the Edna Hicks Research Grant and Sigma Theta Tau International Alpha Theta chapter, who provided me with a research development grant.

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i Table of Contents List of Tables iii List of Figures iv Abstract v Chapter One: Introduction 1 Study Problem Overview 1 Purpose of the Study 4 Hypotheses 5 Significance to Nursing 5 Chapte r Two: Review of the Literature 7 Family Caregivers 7 Dyspnea 11 Mastery 14 Negative Affectivity Trait 15 Conceptual Definitions 17 Conceptual Framework 18 Chapter Three: Methods 20 Research Design and Methods 20 Design 20 Setting, Sampl e, and Sample Size 20 Feasibility Study 22 Study Procedures 23 Data Analysis Plan 27 Chapter Four: Results 30 Dyad Sample Characteristics 30 COPD Patient Sample 30 Family Caregiver Sample 32 Data Analysis Specific to Study Hypotheses 35 Stud y Hypothesis One 41 Study Hypothesis Two 42

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ii Hypothesis Three 43 Hypothesis Four 47 Conceptual Model Testing 47 Chapter Five: Discussion 52 Discussion of Findings 52 Conclusion 60 Recommendations for Further Research 60 References 63 Appendices 68 Appendix A: COPD Patient Data Collection Tool 69 Appendix B: COPD Caregiver Data Collection Tool 81 About the Author End page

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iii List of Tables Table 1. Study Measures 24 Table 2. Data Analysis Plan 28 Table 3. Sample Characteristics 33 Table 4. Comparison of Differences Between COPD Patients and Caregivers Variable Scores 39 Table 5. Correlation Coefficients Between Variables by Patients and Caregivers 40 Table 6. Correlation Coeffic ients Between Variables by Dyad 41

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iv List of Figures Figure 1. Conceptual map: Perceived effectiveness of COPD dyspnea management in patient caregiver dyads 19 Figure 2. Topmost Choices of Treatment Effectiveness by Dyad 45 Figure 3. COPD Patient Model 49 Figure 4. Family Caregiver Model 50 Figure 5. COPD Patient Caregiver Dyad Model 51

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v COPD Dyspnea Management by Family Caregivers Loris A. Thomas ABSTRACT An est imated 14 million people in the United States currently have chronic obstructive pulmonary disease (COPD). This nonreversible illness causes progressively decreasing airflow and is manifested by frequent episodes of acute and chronic dyspnea. The purpos es of this study were: 1) to examine the relationships between mastery (MS), negative affectivity trait (NA), perceptions of patient dyspnea severity (DSI), and perceptions of which dyspnea interventions are effective (DE) among family caregiver COPD pati ent dyads and 2) to examine the degree of agreement between the dyad members regarding dyspnea assessment and management. The study subjects were elderly (patients = 71.6 years, caregivers = 63.4 years), mostly women (patients = 60%, caregivers = 63.3%), Caucasian (96.7%), and patients had severe/very severe COPD (80%). No significant differences were found between family caregivers and patients ratings of MS, NA, DSI, or DE. The most effective dyspnea management strategies identified by both dyad mem bers included changing activity, relaxation, inhaled medication use, and altering breathing pattern. The study conceptual model was tested to identify the interrelationships between the study variables. Significant effects in the patient model were betw een DSI and NA

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vi (p = 0.04), DE and gender (p = 0.04), DE and education (p = 0.015), and between DE and disease severity (p = 0.026). The caregiver model demonstrated no significant effects between the study variables. Significant effects in the dyad mod el were between DSI and the length of time caregiving had been provided (LOT, mean = 25.2 years) (p = 0.013), DE and DSI (p = 0.004), and between DE and LOT (p = 0.03). Gender, education, disease severity, LOT, and DSI influenced DE. Negative affectivity and LOT (mean = 25.2 years) influenced DSI. The findings of this study indicate that when the family caregiver of a patient with COPD is present, he or she is able to provide valid and reliable assessments of the patients dyspnea severity. During acut e exacerbations of dyspnea, persons with COPD are often unable to speak for themselves and these experienced family caregivers may be valuable partners with nurses and other healthcare providers to represent the patients responses and needs.

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1 CHAPTER O NE Introduction Chapter one includes a description of the nursing problem under study. A brief overview of the study problem is presented and the purpose of the study is discussed. The study hypotheses are presented and the significance of the research t o nursing is provided. Study Problem Overview Chronic obstructive pulmonary disease (COPD) is a nonreversible illness that causes progressively decreasing airflow in a large number of persons throughout the world. Barnes (2000) reported COPD as the fourt h leading cause of death and an estimated 14 million people in the United States currently have the disease. By the year 2020, COPD is projected to be the fifth most prevalent disease and the third most common cause of death worldwide. The progressively decreased airflow in COPD is manifested by frequent episodes of acute dyspnea. The term dyspnea is based on the Greek origin of the word roots with dys meaning bad or harmful and pnoe meaning breathing (McCarley, 1999). Dyspnea has been reported in nurs ing literature as a concept that is different from anxiety and panic (Carrieri & Janson Bjerklie, 1987), subjective (DeVito, 1990; Gift, 1987, 1989; Lush, Janson Bjerklie, Carrieri, & Lovejoy, 1988; Nield, Kim, & Patel, 1989), and includes both physiologic and psychologic components (Gift, 1987, 1989; Gift & Cahill,

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2 1990; Schecter & Kamholz, 1990). Dyspnea is defined as a subjective experience of breathing discomfort that consists of qualitatively distinct sensations that vary in intensity and are derive d from interactions among multiple physiological, psychological, social, and environmental factors, and may induce secondary physiological and behavioral responses (American Thoracic Society, 1999, p. 322). Dyspnea is a personal subjective phenomenon tha t is difficult for an observer to assess. The patients perception of dyspnea is often incongruous with the nurses perception of the patients dyspnea (Thomas, 1992; DeVito, 1990; Lush et. al, 1988). Accurate assessment of dyspnea by healthcare provider s is essential in determining appropriate and effective symptom management interventions. The National Institute for Nursing Research (NINR) has identified seven specific areas of clinical research that take precedence for the five year period of 2000 t hrough 2004. These very important research areas include chronic illness, quality and cost of effective care, health promotion and disease prevention, management of symptoms, adaptation to new technologies, health disparities, and palliative care at the e nd of life (NINR, 2000). The study of dyspnea management in COPD patients addresses three of the NINR research priorities; that of managing chronic illness, symptom management, and improving palliative care at the end of life. The recent American Thoraci c Society dyspnea consensus statement (ATS DCS) identifies dyspnea causation, assessment, and treatment as a priority area. These aspects include dyspnea symptom reporting, dyspnea related to exercise, exertion, or fatigue, and dyspnea related to quality of life or functional status (American Thoracic Society, 1999). The American Thoracic Society (ATS) has also published an official statement on research priorities specifically for respiratory

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3 nursing, which includes a recommendation for nursing research to evaluate self care interventions that integrate patients and families into their health care and illness management (American Thoracic Society, 1998). The focus of the study was to explore dyspnea management in elderly COPD patients with an emphasis o n community dwelling patient caregiver dyads and their assessment and management of patients dyspnea. This focus is consistent with the research priorities of both the NINR and the ATS statements and is an area that has not been studied previously. Much research has been done regarding caregivers in other patient populations such as pain management research, another commonly occurring subjective symptom. Dyspnea management research can be described as at a stage of development similar to pain research ap proximately 20 years ago. Although most patient caregiver pain research studies reflect a shorter period of caregiving, usually one year or less; these dyads will be used as a model for this research study. A great deal may be learned about dyspnea management strategies from COPD patients primary caregivers who on average provide 24 hour a day care for approximately 12 years (Cain & Wicks, 2000; Cossette & Levesque, 1993; Leidy & Traver, 1996; Ross & Graydon, 1997; Sexton, 1984; Sexton & Munro, 1985 ; Wicks, 1997). Unfortunately, there is little research currently available regarding caregiver perceptions and management of patient dyspnea symptoms. Healthcare providers dyspnea assessment skills are frequently incongruent with the patients percepti on of their dyspnea severity (McMillan & Moody, 2003; Thomas, 1992). This inaccurate assessment is combined with COPD patient perceived ineffective intervention choices, which leads to poor dyspnea symptom management and can actually worsen the patients

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4 outcomes (DeVito, 1990; Thomas, 1992). Nurses can study and learn from the family caregivers of COPD patients experiences related to making choices about effective interventions. Information gained from this research may be helpful in guiding nursing int erventions that are effective in managing the dyspnea of COPD patients. A research focus on the caregiver spouses of COPD patients, most of whom have many years of practical experience, may reveal more about dyspnea assessment techniques and how to man age dyspnea symptom. Data collected in this study will shed light on the methods used by caregivers to determine dyspnea management interventions in COPD patients. It will also identify the congruence of the perceptions of the patient and caregiver regard ing the COPD patients dyspnea severity, the choice of interventions that are perceived as helpful by the patient during a dyspnea episode, and the interventions that are not perceived as helpful by the patient during a dyspnea episode. Purpose of the Stu dy The overall purpose of this study was to examine the relationships between mastery, negative affectivity trait, perceived dyspnea severity and perceived dyspnea intervention effectiveness among patient caregiver dyads. Dyads, consisting of persons with COPD and their caregivers who are living independently in the community were examined. Study findings may be used to plan future research related to choosing appropriate and effective interventions for persons with COPD who live with chronic and acute dy spnea.

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5 Hypotheses Research hypotheses were developed to examine the study problem from the perspective of the patient, the caregiver, and the relationship between the dyad. 1. Perception of dyspnea severity is affected by mastery level, negative affecti vity trait, and specific demographic variables to include gender, education level, COPD disease severity classification (National Heart, Lung, and Blood Institute/World Health Organization, 2003), and length of time caregiving has been provided. 2. Perception of dyspnea intervention effectiveness is affected by mastery level, negative affectivity trait, and specific demographic variables to include gender, education level, COPD severity classification, and length of time caregiving has been provided. 3. Patient s are more likely to report perceived effectiveness of the dyspnea interventions and the dyspnea management when there is agreement between the patient and caregivers assessment of the patients dyspnea severity, adjusting for mastery and negative affecti vity trait. 4. There is an indirect relationship between negative affectivity trait scores and reported perceived effectiveness of the dyspnea interventions and the dyspnea management. Significance to Nursing Incongruence in dyspnea assessment between COPD pa tients reported symptom perceptions and nurses perceptions have been demonstrated. This inaccurate assessment mixed with COPD patient perceived ineffective intervention choices, may lead to ineffective dyspnea management and exacerbate the patients sym ptoms. Although, the relationship between mastery levels and perceived dyspnea severity has been

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6 demonstrated, the link between negative affectivity, mastery, perceived dyspnea severity and perceived dyspnea intervention effectiveness has not been explore d. Understanding the interrelationships among these variables may assist in improved management of dyspnea in COPD patients. Focusing on COPD caregivers, who have many years of practical experience, may reveal more precise dyspnea assessment technique s and more successful dyspnea management. Data collected in this study uncover the methods used by caregivers to determine dyspnea management interventions in COPD patients. It also identifies the association between the perceptions of the patient and ca regiver regarding the COPD patients dyspnea severity, the interventions that are perceived to be effective by the patient during a dyspnea episode, and the interventions that are not perceived to be effective by the patient during a dyspnea episode. Much may be learned about dyspnea management strategies from COPD patients primary caregivers. Unfortunately research regarding caregiver perceptions and management of dyspnea symptoms is scarce. The long term first hand experiences of family caregivers of patients with COPD may provide valuable information about what treatments work and which treatments are ineffective. The family caregivers front line accounts may reveal important information not in the nursing literature and should be empirically tested in the future.

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7 CHAPTER TWO Review of the Literature This chapter includes an analysis of the literature that is pertinent to the variables addressed in this study. Appropriate literature was located through a computerized search of the Cumulative Index of Nursing and Allied Health Literature (CINAHL), MEDLINE, and PsycINFO databases from 1980 through 2004. Literature differentiating the characteristics COPD caregivers from other caregivers in the literature is reviewed. Studies that describe the sens ation and measurement of dyspnea in persons diagnosed with COPD are reviewed next. Literature describing the concepts of mastery and negative affectivity trait, as they relate to dyspnea in chronic obstructive pulmonary disease patients is also reviewed. Based on the literature reviewed, the major theoretical concepts used throughout the study are defined. Finally, a conceptual map is presented to illustrate the interrelationships of the patient caregiver dyad variables in the study. Family Caregivers Re search in the area of family caregivers of patients with COPD is scarce in the literature. Only eight studies were located using a computerized search and a research synthesis approach was used to summarize these studies. Terms used to guide the computer ized search included: caregiver, caregiving, chronic obstructive pulmonary disease, and dyspnea. The results have been pooled into one combined sample and are described as follows. All studies were cross sectional and used convenience sample

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8 subjects. Three of the studies, Cain and Wicks (2000), Leidy and Traver (1996) and Sexton and Munro (1985), were secondary data analyses of previous studies done by the authors; the five others were new research data. The pooled sample characteristics include 535 caregiver subjects; 57 males (10.5%), and 478 females (89.5%). The mean age of the caregiver sample was 63.25 years with a range of 27 to 79 years including 46 subjects with unknown age. There were a total of 510 COPD subjects including 466 males (91.4%) and 44 females (8.6%). The mean age of the COPD sample was 68.28 years with a range of 61.87 to 77.25 years; 92 subjects with unknown age. Sample ethnicity was reported in 4 studies and represents 72.6% of the total sample (Sexton, 1984; Sexton & Munro, 1985; Wicks, 1997; Cain & Wicks, 2000). When sample ethnicity is reported it is expressed in dyads including 325 white (63.7% of the total sample), 45 black (8.8% of the total sample), and 140 unknown (27.5% of the total sample). COPD disease severity w as reported in 5 studies, which represents 50.4% of the COPD sample (Sexton, 1984; Sexton & Munro, 1985; Cossette & Levesque, 1993; Leidy & Traver, 1996; Ross & Graydon, 1997), illness severity descriptors were used in two studies, which represents 18% of the COPD sample (Sexton, 1984; Sexton & Munro, 1985), and exact forced expiratory volume in one second (FEV 1 ) percentages were reported in 3 studies, which represents 32.4% of the COPD sample (Cossette & Levesque, 1993; Leidy & Traver, 1996; Ross & Graydon 1997). The mean FEV 1 of the COPD sample reported was 36.5% predicted with a range of 13% to 60% predicted. Duration of illness was reported in four studies, which represents 59.8% of the COPD sample (Cossette & Levesque, 1993; Leidy & Traver, 1996; Ros s & Graydon, 1997; Wicks, 1997). The mean duration of illness was 12.03 years with a range of 0 to 27.83

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9 years. No patient characteristics, other than a diagnosis of COPD, were reported in one study (Bergs, 2002). The focus of all of the studies was on the impact of caring on the caregiver. COPD caregiver poor physical and psychological health, high stress levels and high personal role strain was revealed. Much information was also revealed about the characteristics of the COPD patient in the communit y and the duration of care needed. Although not addressed in this literature, caregivers may be able to teach healthcare providers about effective methods of dyspnea assessment and management in COPD patients. Pain research is ahead of dyspnea research i n this area and it may be possible to borrow information from that field to design studies to learn more about caregivers knowledge about dyspnea assessment and management based on their experience. Published correlations of patients and caregivers rati ngs of dyspnea are limited; however correlations of dyad pain ratings are present in the research literature. Pain is also a subjective symptom, like dyspnea, but has been studied more extensively in the area of rating congruence between patient and careg iver. Grossman, Sheidler, Swedeen, Mucenski, & Piantadosi (1991) studied the correlation between different health care providers and 44 patients ratings of pain using a visual analog scale (VAS) tool. Congruence was evident when patient pain scores wer e low, < 4, but when patient pain scores were high, between 7 to 10, there was very poor accuracy in predicting patient pain scores; providers were accurate only 7 to 27% of the time. Taylor et al. (1993) studied the congruence of cancer pain ratings betw een 10 patient family caregiver home health nurse triads using qualitative methods. Two questionnaires and one semi structured interview were used to collect the data. A six expert panel was reported to

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10 have developed the interview; contributing to the c ontent validity reported; no psychometric information was provided about the questionnaires. The Taylor study concluded that perceptions of pain that influence decisions and conflicts about pain management are influenced by a persons worldview, by a pers ons intrapersonal and interpersonal relationships, and by numerous attitudes, beliefs, and values that were influenced by previous painful experiences. Lobchuk, Kristjanson, Degner, Blood, & Sloan (1997) studied the congruence between 37 patient family c aregiver dyads perceptions of distress in lung cancer patients. Pain and breathing were among the 13 distressing symptoms studied. Dyads were asked to complete the McCorkle and Young Symptom Distress Scale (SDS), which uses a five point Likert type forma t; this tool is reported to have good reliability levels in previous studies (0.79 to 0.83). Fifty four percent of the caregivers had provided care for 12 months or more. Overall, 65% of the caregivers SDS scores were reported as correlated with the pa tients scores (r=0.71, P < 0.001). Lobchuk also reported that the longer time since diagnosis, the greater the discrepancy between patient and family symptom distress scores. Use of these pain symptom management data may be helpful in the study dyspnea, which is also a subjective symptom. Two recent studies of large numbers of hospice cancer patients revealed conflicting results regarding the accuracy of caregivers assessments of patients dyspnea severity. McMillan and Moody (2002) conducted a st udy of 264 patients in hospice home care and assessed the ability of the primary caregiver at home to assess the severity of the patients dyspnea and other symptoms. They found that family caregivers significantly overestimated the severity of the symptom s (p = 0.000). In another study of

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11 hospice cancer patients these researchers (Moody & McMillan, 2003) assessed 163 cancer patients and their family caregivers ratings of dyspnea and found that there were no significant differences between them. This st udy indicated that family caregivers accurately assessed the dyspnea severity of the patient. The conflicting findings about the accuracy of caregivers dyspnea assessments in these two studies of similar patient caregiver populations indicates that furth er studies about this phenomenon are needed. Most studies of family caregivers of patients with COPD suggest that caregivers can provide valuable information about symptom management. Symptom management studies generally include investigation of associ ated symptoms or concepts. The associated concepts of mastery and negative affectivity trait were explored in this study. Dyspnea The majority of previous dyspnea assessment studies use patient self report on various quantitative measurement tools t o determine the level of dyspnea experienced (Brown, Carrieri, Janson Bjerklie, & Dodd, 1986; Gift, 1989; Janson Bjerklie, Carrieri Kohlman, & Hughes, 1986; Lareau, Carrieri Kohlman, Janson Bjerklie, & Roos, 1994; Lareau, Meek, & Roos, 1998; Lareau, Me ek, Press, Anholm, & Roos 1999; Larson, Kapella, Wirtz, Covey, & Berry, 1996; Lush et al., 1988; Mahler, Harver, Rosiello, & Daubenspeck, 1989; Moody, McCormick, & Williams, 1990; Moody, Lowry, Yarandi, & Voss, 1997; Powers & Bennett, 1999; Thomas, 1992). However, many of these studies assess recalled dyspnea, as opposed to current dyspnea ratings (Brown et al., 1986; Janson Bjerklie et al., 1986; Lareau et al., 1994; Lareau et al., 1998; Lareau et al., 1999; Larson et al., 1996; Mahler et al., 1989; Moody et al., 1990). Current

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12 dyspnea reporting is assessed in few studies (Gift, 1989; Mahler, Weinberg, Wells, & Feinstein, 1984; Mahler et al., 1989; Moody et al., 1997; Thomas, 1992). In a thesis study, the relationships between mechanically ventilated COP D patients reports of dyspnea severity and simultaneous nurses assessments of patient dyspnea severity during weaning from mechanical ventilation in the intensive care unit were examined (Thomas, 1992). Nurses assessed patient dyspnea levels to be lower than patients reported dyspnea levels (t = 3.308, P = 0.004) and these nursing assessments were positively correlated with increased numbers of failed weaning attempts (r = 0.74 to 0.69, 16 df, P = 0.004 to 0.0013). Patient mastery scores were found to be higher before the weaning process began (r = 0.58, 16 df, P = 0.013); it was concluded that these high mastery levels, while the patient was being mechanically ventilated, created a false sense of security, creating a false decrease in patient dyspnea level perception. Although intensive care nurses frequently provide care for acutely ill COPD patients on mechanical ventilation; in this study nursing dyspnea assessments incongruent with patient dyspnea reports led to nursing intervention choices that were i neffective and resulted in unsuccessful weaning. DeVito (1990), in a qualitative study, described patients recollections about perceptions of dyspnea and nursing actions during an acute COPD exacerbation. This study reported that patient descriptions of the dyspnea experience in the hospital setting grouped into five categories including fear, helplessness, loss of vitality, preoccupation, and legitimacy. Fear was described in a cyclic manner; increased difficulty breathing caused fear and fear caused more difficulty breathing. Helplessness was reported as perpetuated by nurse stated phrases such as get in control and mind over matter in

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13 reference to the patients breathing (DeVito, 1990, p. 188). Loss of vitality was described as loss of the pow er to live; they equated the difficulty breathing with certain death. Preoccupation was depicted as the act of breathing requiring a concerted effort and was no longer automatic. Legitimacy was reported as a difficulty in making others aware of the magni tude of their dyspnea. This study paints a vivid and convincing picture of dyspnea as a frightening experience using the patients descriptions. It also describes patients perceptions that nurses poorly manage their dyspnea during hospitalizations. T he patients perception of dyspnea can be influenced by other factors. Two influences have been identified in the literature and have been chosen to be explored in this study include mastery and attitude or affectivity. Mastery has been shown to have an inverse relationship with dyspnea in COPD patients in a variety of settings including mechanically ventilated intensive care unit patients, hospitalized patients and outpatients (Moody, 1990; Moody et al., 1990; Moody et al., 1997; Thomas, 1992). An incre ase in mastery scores, which indicate a feeling of control over daily events, yield decreased dyspnea perceptions and decreased mastery scores, which indicate a feeling of loss of control over daily events, yield increased dyspnea perceptions. Investigat ors concluded that caregiver reports of COPD patients negative attitudes and irritable affects increase the dyspnea symptoms and increase caregiver difficulty in managing the symptoms (Leidy & Traver, 1996; Sexton, 1984; Sexton & Munro, 1985). Kressin, S piro, & Skinner (2000) concluded that persons with increased negative affectivity trait are more likely to complain about health symptoms and underestimate outcomes perceptions regardless of actual physical health. In addition, a negative correlation was demonstrated between physical function in healthy patients with chronic lung problems and negative

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14 affectivity trait (Kressin et al., 2000). The relationship between negative affectivity trait and dyspnea perception has not yet been explored in the liter ature. Mastery Mastery is a psychological concept defined as the patients perception of his or her ability to manage day to day events (Moody et al., 1990). Bandura & Adams (1977) report positive behavior changes that enable persons to manage the str essors of illness in their description of self efficacy theory analysis. Self efficacy is explained as a concept that results from systematic desensitization to the illness stressor that increases individuals perception of their ability to manage or mast er daily events in the presence of the illness. Strong correlations between self efficacy levels and mastery behaviors that enable individuals to manage the daily challenges faced due to their illness are reported (Bandura, 1977). The concept of mastery has been explored in a number of research studies of chronic illnesses as well as COPD patients. Jang, Haley, Small, & Mortimer (2002) found that mastery plays a major role in the ability of elderly individuals to cope with disabilities. These authors concluded that social support and higher mastery levels were associated with decreased levels of depression in elderly disabled adults. Mastery has also been found to have a significant effect on the quality of life and functional status of COPD patients (Guyatt, Walter, & Norman, 1987; Moody, 1990; Moody et al., 1990; Sturesson & Branholm, 2000; Thomas, 1992). Sturesson & Branholm (2000) explored the perception of life satisfaction in COPD patients and found that while there was no correlation between lu ng function and life satisfaction in their sample, there were three quality of life measures that were strongly correlated with life satisfaction. Emotional

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15 function, fatigue, and mastery were significantly correlated with life satisfaction in the sample of COPD patients in their study. Thomas (1992) reports poor clinical outcomes were demonstrated in mechanically ventilated COPD patients during the weaning process; weaning was not accomplished in patients with low mastery scores. Patient mastery scores were strongly correlated with patient dyspnea perceptions in this study as well. Caregiver and patient mastery scores were assessed in this study. The relationship between mastery scores, the perception of dyspnea severity, and the perception of dyspn ea management effectiveness in the community dwelling COPD patient and caregiver will be determined. Negative Affectivity Trait Studies of symptom perception and chronic medical conditions indicate that an important mediator is the patients aversive mo odiness or negative affectivity trait (Denollet, 2001; de Ridder, Fournier & Bensing, 2004; Kolk, Hanewald, Schagen, & Gijsbers van Wijk, 2003; Kressin et al., 2000; Singer, Ruchinskas, Riley, Broshek, & Barht, 2001). Negative affectivity trait (NA) is de fined as a pervasive disposition or trait to experience subjective distress, including aversive mood states (Kressin et al., 2000). These researchers report that persons with high NA consistently report worse self perceived health, more symptoms, and unde restimate perceived outcomes although their underlying health is not always found to be worse. The Kressin study explores NA in three different samples of adults > 50 years of age (mean age 66.4 to 68.2 years) with a combined sample of 1629 people. The N A scale used (9 question short form) has good reported reliability and validity. The effect of NA on eight domains of health related

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16 quality of life (HRQOL) was explored. The HRQOL domains included physical function, physical role, bodily pain, general h ealth, vitality, social function, emotional role, and mental health. Physical function was found to be moderately negatively correlated with high NA scores in all three samples in a variety of chronic medical conditions including lung problems (r = 0.08 to 0.10). Vitality related to chronic medical conditions including lung problems was reported to be statistically negatively correlated ( P < 0.001 [N=346] to P < 0.0001 [N=1037]) with high NA scores in two of the samples (N=1383). Regression models were use d and in these models NA was reported to explain between 0 to 13.9% of the variance in the eight domains studied. Other studies of symptom perception and chronic medical conditions indicate that NA can influence the perceptions of symptoms in persons wit h chronic illness. Kolk, Hanewald, Schagen, & Gijsbers van Wijk (2003) conducted an investigation of variables that influence the perception of common symptoms in 152 persons. Negative mood was found to be a key influence on the perception of s ymptoms. Decreased NA was found to be a mediator of decreased symptom reporting in a study of chronically ill patients with diabetes and multiple sclerosis (de Ridder, Fournier & Bensing, 2004). Personality types and traits including NA were found to be risk factors for depressive mood states and heart disease in a recent study of 734 patients with hypertension (Denollet, 2001). In a study of 243 end stage lung disease patients, approximately 25% were found to present with mood disturbances that influenc ed their report of symptoms and need for treatment (Singer, et al., 2001). In a study of COPD patients symptoms, negative mood was to found to directly influence the functional status of the patients (Graydon & Ross, 1995). Perhaps these data can help to explain the COPD caregivers

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17 reports of problems with patients attitude, irritability (Sexton & Munro, 1985), negativism, verbal expansiveness, and belligerence (Leidy & Traver, 1996) and their relationship to the perceptions of dyspnea and treatment e ffectiveness. Caregiver and patient NA scores were assessed in this study. The relationship between NA scores, the perception of dyspnea severity, and the perception of dyspnea management effectiveness in the community dwelling patients with COPD and th eir caregiver were studied to determine if this aversive worldview influences the perceptions of the patients dyspnea and treatment effectiveness. Conceptual Definitions Mastery (patient): The individuals perception of his or her ability to manage day to day events (Moody et al., 1990). Mastery (caregiver): The individuals perception of his or her ability to manage day to day events related to the patients condition and needs (Moody et al., 1990). Negative Affectivity Trait: An all encompassing tend ency to experience perceived distress including aversive moods (Kressin et al. 2000). Perceived Dyspnea Management Effectiveness: The individuals perception of the degree of overall usefulness of an intervention employed to treat the dyspnea episode (Webb, Moody, & Mason, 2000). Perceived Dyspnea Severity: The perception of a sensation of difficulty or labored breathing (DeVito, 1990 & Gift, 1987). Demographic Variables: gender (male or female), education level (measured in years of formal school ing), severity of illness (measured by GOLD classification), and the length of time that caregiving has been provided (measured in years).

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18 Conceptual Framework The information gleaned from pain caregiver research studies, the COPD caregiver research revie wed, and the dyspnea priorities addressed in the ATS statements have been combined to build a conceptual map to guide this study (Figure 1). The conceptual map depicts examination of the perceived effectiveness of COPD dyspnea management in patient caregi ver dyads among the study variables. The demographic variable illustrated in the map includes gender, education level, severity of illness measured by GOLD classification (National Heart, Lung, and Blood Institute/World Health Organization, 2003), and the length of time that caregiving has been provided. Mastery is illustrated as affecting both dyspnea severity and dyspnea intervention effectiveness. Negative affectivity trait is illustrated as affecting dyspnea severity and dyspnea intervention effectiv eness. Dyspnea severity is illustrated as a being affected by mastery, negative affectivity trait and demographic variables as well as affecting perceived dyspnea intervention effectiveness. Perceived dyspnea management effectiveness is illustrated as be ing affected by mastery, negative affectivity trait, demographic variables, and dyspnea severity. While the impact of nursing and other healthcare providers in dyspnea management is important, it is a latent variable in this model and is not measured due to the focus on the patient caregiver dyad in this study. However, study results from the dyad may prove to impact nursing care.

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19 a = Observed variable b = Latent variable = Observed relationsh ip = Unmeasured relationship Figure 1. Conceptual map: Perceived effectiveness of COPD dyspnea management in patient caregiver dyads a Mastery will be treated as a covariate and controlled for in regression analyses b Negative affectivity trait will be treated as a covariate and controlled for in regression analyses MASTER Y a PERCEIVED DYSPNEA MANAGEMENT EFFECTIVENESS NEGATIVE AFFECTIVITY TRAIT b PERCEIVED DYSPNEA SEVERITY NURSING & OTHER HEALTHCARE PROVIDERS DEMOGRAPHIC VARIABLES

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20 CHAPTER THREE Methods This chapter describes the methodology of the research study. Included in this chapter is a description of the study design, sampling, instruments, proce dures, and data analysis. Research Design and Methods Design The study is a descriptive correlational design using selected subjects from a cross sectional sample to analyze the relationship between the patient caregiver dyads perceptions of dyspnea symp toms and management. Power analysis calculations indicated that a minimum sample of 60 subjects, consisting of 30 patient caregiver dyads, would be sufficient to address the research hypotheses. This sample size is based on a formulation of 80% power, 5 independent variables, an effect size of 0.54 (r 2 = 35%), and a significance of 0.05 (Erdfelder, Faul, & Buchner, 1996). Setting, Sample and Sample Size A north central Florida health science center was the data collection site. The hospital medical s urgical unit that has a record of frequent COPD related DRG patient admissions and the pulmonary medicine clinic were used. All patients with a documented acute respiratory medical admission diagnosis and admitted to the designated unit were assessed on a daily basis regarding the study inclusion and

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21 exclusion criteria. All COPD patients seen in the clinic were assessed on a weekly basis regarding the study inclusion and exclusion criteria. All patient caregiver dyads that met criteria were asked to par ticipate in the study. Participants were assigned study numbers and placed on a list; no other identifiers were used. Subject selection continued until a total of 30 COPD patient caregiver dyads completed the study. Inclusion criteria. COPD patients > 55 years of age with a primary caregiver living in their home or immediately nearby their home. All patients with evidence of moderate to very severe obstructive lung disease as indicated in their medical record to meet the GOLD disease severity classifications of moderate, severe, or very severe. All patients and caregivers who were able to read or understand the English language. All patients and caregivers who agreed and signed the study informed consent form befor e being enrolled in the study. Exclusion criteria. Patients with any obvious cognitive impairment or severe underlying illness and/or disability that would prohibit study participation such as renal failure, liver failure, or congestive heart fa ilure. Caregivers with any obvious cognitive impairment or severe underlying illness and/or disability that would prohibit study participation such as renal failure, liver failure, or congestive heart failure.

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22 Feasibility Study A feasibility study was conducted to determine if an adequate number of subjects meeting the study criteria would be available at a north central Florida academic health science center hospital. Medical records of discharged patients > 65 years of age who had been diagnosed with a respiratory diagnostic related group (DRG) over a five month period were reviewed. The feasibility study revealed that during this period of time 292 patients were discharged with respiratory DRGs and of those, 75 patients were both admitted and d ischarged with COPD related DRGs. The most prevalent admission DRGs (73%) were among three specific DRGs including pneumonia (DRG 486), chronic airway obstruction (DRG 496), and obstructive chronic bronchitis (DRG 491). The most prevalent discharge DRGs (77%) included the two specific DRGs of chronic obstructive pulmonary disease (DRG 88) and simple pneumonia (DRG 89). This sample of 75 patients was ethnically representative of the geographic region and 62.5% lived in the community with a caregiver. The sample included 48% males with a mean age of 74.7 years and 52% females with a mean age of 72.4 years. The mean FEV 1 was 46% predicted; however, only 31% of the sample had documented FEV 1 results; this helped to identify the need to include FEV 1 measurem ents as a part of inclusion screening of subjects in the proposed study. The mean length of stay (LOS) was 5 days with 63% having a LOS of < 4 days and 37% having a LOS of < 2 days; this helped to identify the need for early recruitment during the hospita l stay. The specific hospital unit location of patients upon discharge revealed that 100% of those with the most prevalent admission and discharge DRGs were discharged from one specific medical surgical unit; this was very helpful in identification of a s pecific unit to be targeted for subject recruitment in

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23 this study. Based on this feasibility review, it was determined that obtaining an adequate sample size for this study was possible at this site. Study Procedures Written approval from the Universi ty of South Florida Institutional Review Board and the institutional review board for the north central Florida health science center was be obtained for this study before all data collection. Individual written informed consent was obtained from each pat ient and each caregiver before all data collection. Subject confidentiality was maintained. All study data was entered into a computerized database using only assigned study numbers as identifiers. The computer, study documents, and study computer d isks were kept in a locked office in a locked file cabinet. Computer file access required security code and password to logon. Only the primary investigator had knowledge of the computer codes needed to access study files and had the file only cabinet ke y to access study documents and computer disks. An assortment of data collection tools or measures was used to collect data pertinent to the study variables. Measures used for each study variable, including their psychometric properties, are described in Table 1. Data including age, gender, ethnicity, education, marital status, relationship to other dyad member, living arrangement, employment status, religious affiliation, insurance coverage, household income range, COPD disease severity classification, a nd smoking history were collected using a demographic data form on study subjects.

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24 Table 1. Study Measures Variable Instrument/Description Psychometric properties Demographic Variables Demographic Data Form (DDF) Age, gender, ethnicity, ed ucation, marital status, relationship to dyad member, living arrangement, employment status, religion, insurance coverage, household income range, COPD disease severity classification, & smoking history Continuous and categorical data Scoring : frequency distribution Mastery Mastery scale (MS) (Moody, 1988; Moody 1990; & Moody et al., 1990) Measures perception of the degree of ability to manage day to day events specifically related to breathing difficulty. Conceptually similar to the construct o f self efficacy Subscale of Chronic Disease Assessment Tool (Moody, 1988; Moody 1990; & Moody et al., 1990) 5 items: 7 possible Likert type response choices (from all of the time to none of the time) Scoring : Range 0 to 35 with item scores su mmed. Greater scores indicate greater degree of mastery Reliability : Alpha reliability of 0.65 to 0.96 in studies of COPD patients (Moody, 1988; Moody 1990; & Moody et al., 1990) Validity : 0.94 Content validity reported for all items (Moody, 1990; & Moo dy et al., 1990) Continued on the next page

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25 Table 1. Study Measures (Continued) Variable Instrument/Description Psychometric properties Negative Affectivity Trait (NA) Negative affectivity scale (Kressin et al., 2000) Measures NA per sonality trait using dichotomous items about feelings, character, and actions. Similar to the construct of emotionality on the Eysenck Personality Inventory 9 dichotomous items: yes or no responses Scoring : Range 0 to 9 with item scores summed. High scores indicate increased NA Reliability : Kuder Richardson 20 reliability of 0.74 in study of 3 samples of community dwelling adults age > 50 years, mean age range 66.4 years to 68.2 years; combined N=1629 (Kressin et al., 2000) Validity : Construct validity reported to be highly correlated with other measures of NA: range 0.60 0.82 (Kressin et al., 2000) Perception of Dyspnea Severity Dyspnea Severity Index (DSI) (Moody, 1988; Moody 1990; & Moody et al., 1990) Measures recollection of the past weeks dyspnea in 3 areas: most days, during activities, and worst. Also measures one current measure of dyspnea severity. Subscale of Chronic Disease Assessment Tool (Moody, 1988; Moody 1990; & Moody et al., 1990) 4 items: Horizontal VAS responses (0 to 10) Scoring : Range 0 to 40 with item scores summed. Greater scores indicate greater dyspnea severity Used extensively to assess dyspnea in persons with respiratory disease Reliability : VAS test retest reliability 0.95 0.99 (Wewers & Lowe, 1990) Vali dity : 0.76 to 0.96 Criterion validity reported; correlated with Borg scale, vertical VAS, numerical rating scale, and faces scale (Powers & Bennett, 1999) Continued on the next page

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26 Table 1. Study Measures (Continued) Variable Instrument/Descr iption Psychometric properties Perception of Dyspnea Management Effectiveness Treatment for Breathing (TBP) Problems tool (Moody, 1988; Moody 1990; & Moody et al., 1990) Measures perception of the amount of effectiveness of 29 listed and 1 open ended common dyspnea intervention items (such as medications, energy conservation, decreasing activity, & relaxation). One open ended question about dyspnea management (DMQ) Subscale of Chronic Disease Assessment Tool (Moody et al., 1990) 30 intervention it ems: fill in responses of % effective: (0 to 100%) Scoring : Mean all items selected Reliability and Validity (Webb, Moody, & Mason, 2000): Interrater reliability among patient caregiver dyads 0.88, content validity 0.96 DMQ item : What one thing seem s to help the most when the person has a severe attack of shortness of breath? Inter rater reliability of open ended item response analyses will be assessed After informed consent was obtained from both the patient and the caregiver, data collection began as follows: Patient caregiver dyad responses were collected separately. The patient and the caregiver completed the study tools without knowledge of the others responses. The patient completed the Demographic Data form, Dyspnea Man agement open ended question, Dyspnea Severity Index, Mastery scale, Negative Affectivity scale, and the Treatment for Breathing Problems tool.

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27 Assistance was provided for the patient as needed (i.e. read the questions to the patient, provide questions in a larger font, etc.). The caregiver completed the Demographic Data form, Dyspnea Management open ended question, Dyspnea Severity Index, Mastery scale, Negative Affectivity scale, and the Treatment for Breathing Problems tool. Assistance was pro vided for the caregiver as needed (i.e. read the questions to the caregiver, provide questions in a larger font). Data Analysis Plan Data collected in this study was used to construct a path analysis model depicting variables and their effect on dyspne a management in COPD. A variety of analysis methods was used to address the research hypotheses including correlation analysis and regression, to examine the quantitative data, and cross case analysis was used to examine the qualitative data gathered (Tab le 2). Structural equation modeling was used to test the conceptual model (SAS Institute Inc., 1990). Structural equation modeling is an important statistical tool, which expresses the relationship among several variables (Bollen, 1989). The CALIS proc edure estimates parameters and tests the appropriateness of linear structural equation models using covariance structure analysis. This procedure can be used to estimate parameters and test hypotheses for problems in multiple and multivariate linear regre ssion, path analyses and causal modeling.

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28 Table 2. Data Analysis Plan Study hypothesis Variable Instruments Analysis 1. Perception of dyspnea severity is affected by mastery level, negative affectivity trait, and specific demographic vari ables to include gender, education level, COPD severity classification, and length of time caregiving has been provided. Demographics Mastery Negative Affectivity Trait Perceived Dyspnea Severity DDF MS NA scale DSI Correlation analysis Regression Structural equation modeling 2. Perception of dyspnea intervention effectiveness is affected by mastery level, negative affectivity trait, dyspnea severity and specific demographic variables to include gender, education level, COPD severity classificati on, and length of time caregiving has been provided. Demographics Mastery Negative Affectivity Trait Perceived Dyspnea Management Effectiveness DDF MS NA scale TBP Correlation analysis Regression Structural equation modeling 3. Patients will b e more likely to report perceived effectiveness of the dyspnea interventions and the dyspnea management when there is agreement between the patient and caregivers assessment of the patients dyspnea severity, adjusting for mastery and negative affectivity trait. Mastery Negative Affectivity Trait Perceived Dyspnea Management Effectiveness Perceived Dyspnea Severity MS NA scale TBP DMQ DSI Correlation analysis Regression Structural equation modeling Cross case analysis (Huberman & Miles, 1998) Con tinued on the next page

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29 Table 2. Data Analysis Plan (Continued) Study hypothesis Variable Instruments Analysis 4. There is an indirect relationship between negative affectivity trait scores and reported perceived effectiveness of the dyspnea interventions and the dyspnea management. Negative Affectivity Trait Perceived Dyspnea Management Effectiveness Perceived Dyspnea Severity NA scale TBP DMQ DSI Correlation analysis Cross case analysis (Huberman & Miles, 1998)

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30 CHAPTER FOUR Resul ts This chapter presents the results of the research study. Included in this chapter is a description of the COPD patient caregiver dyad sample characteristics and data analysis specific to the study hypotheses. Dyad Sample Characteristics The COPD patie nt caregiver dyad subjects were a convenience sample recruited from a northern central Florida health science center pulmonary clinic setting over an eighteen month period. Initially recruitment of subjects from an acute care inpatient setting as well as the pulmonary clinic was planned. Rapid patient admission and discharge rates of the desired study population in the acute care site precluded timely recruitment of inpatient subjects in this study. COPD Patient Sample A total of 155 pulmonary clin ic patients who met the eligibility criteria were approached to participate in the study. Very few eligible clinic patients declined to participate (n = 4), many eligible clinic patients were excluded because they did not have a caregiver (n = 44) or did not have pulmonary function test results in their medical record data (n = 66) or did not attend the appointment time (n = 11). The eligible patients who were excluded from the study had similar gender (male = 38.9%, female = 61.1%),

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31 age (mean = 71.1 ye ars) and disease severity characteristics (31% moderate, 69% severe/very severe) as the study patients participants. A sample of 30 subjects with COPD was recruited to participate in the study. The mean age of the COPD patient subjects was 71.6 (SD = 7. 4) years with a range of 57 to 86 years. The majority of the patient subjects were female (n = 18, 60%) and of Caucasian ethnicity (n = 29, 96.7%). Overall the subjects were well educated; the number of years of formal educational of the subjects ranged from 4 to 22 years with an mean of 12.7 (SD = 3.8) years. The majority of the patient subjects indicated that they were spouses/partners of their caregiver (n = 19, 63.3%). The remaining patient subjects indicated that the caregiver was a child of the pa tient in 20% (n = 6), the caregiver was a sibling in 6.7% (n = 2), and the caregiver was listed as other in 13.3% (n = 4) of the patient sample. The majority of the patient sample were living only with their spouse caregiver (n = 21, 70%), 13.3 % were l iving alone (n = 4), 6.7% were living with their spouse/partner and children (n = 2), and 10% were living in other situations (n = 3) in the community. The annual household income of the sample ranged widely from below $10,000 (n = 2, 6.7%) to more than $100,000 (n = 3, 10%), with the majority of the annual household incomes in the patient sample falling between $10,001 and $49,999 (n = 20, 66.6%). The majority of the patient sample (n = 28, 93.3%) had a history of smoking tobacco and 13.3% (n = 4) w ere currently smokers at the time of the study. Ninety percent (n = 27) of the patient sample had smoked > 1 pack per day. The mean number of years smoking was 33.2 (SD = 17) years with a range of 14 to 70 years. The majority of the patient sample had a COPD disease severity classification of severe or very severe (n = 24, 80%) and the remainder of the sample were classified as having high

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32 moderate disease severity (n = 6, 20%). Another measure of obstructive lung disease on pulmonary function testing, forced exhaled volume in one second (FEV 1 ), was retrievable in 86.7% (n = 26) of the patients medical records. The mean FEV 1 for these patients with pulmonary function data present in the medical record was 38.2% predicted (SD = 15.2) with a range of 12% to 62% predicted. This is another indicator that the mean COPD disease severity in the majority of the patient sample, as measured by pulmonary function testing, was also classified as severe or very severe. Table 3 depicts the COPD patient sample chara cteristics as compared to the COPD caregiver sample characteristics. Family Caregiver Sample A sample of 30 subjects who were the primary care providers for the COPD patient sample participated in the study. The mean age of the caregiver subjects was 6 3.4 (SD = 11.5) years with a range of 35 to 81 years. The majority of the caregiver subjects were also female (n = 19, 63.3%) and of Caucasian ethnicity (n = 29, 96.7%). Overall the subjects were well educated; the number of years of formal education of the subjects ranged from 4 to 18 years with a mean of 13.7 (SD = 2.6) years. The majority of the caregiver subjects indicated that they were spouses/partners of the COPD patient (n = 19, 63.3%). The remaining caregivers indicated that they were the child of the patient (20%, n = 6), they were a sibling (6.7%, n = 2), or they listed themselves as other (10%, n = 3). The majority of the caregiver sample were living only with their COPD patient spouse (n = 23, 76.7%), 3.3 % were living alone (n = 1), 16.7% were living with their COPD patient parent (n = 5), and 3.3% were living in other situations (n = 1) in the community. The annual household income of the caregiver sample ranged widely from below $10,000 (n = 2, 6.7%) to more than $100,000 (n = 3, 10%), with the majority of

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33 the annual household incomes in the caregiver sample falling between $10,001 and $49,999 (n = 19, 63.4%). The majority of the caregiver sample had a history of smoking tobacco (n = 18, 60%) and 16.7% (n = 5) were current ly smokers at the time of the study. Less than half (n = 14, 46.7%) of the caregiver sample had smoked > 1 pack per day. The mean number of years smoking was 18.1 (SD = 15.4) years with a range of 10 to 40 years. Table 3 depicts the COPD caregiver sampl e characteristics as compared to the COPD patient sample characteristics. Table 3. Sample Characteristics COPD Patient Sample COPD Caregiver Sample Variable Frequency Percent Frequency Percent Gender Male Female 12 18 40 60 11 19 36 .7 63.3 Age 35 to 45 years 46 to 55 years 56 to 65 years 66 to 75 years 76 to 86 years 0 0 6 13 11 0 0 20 43.3 36.7 2 6 8 8 6 6.6 20 26.7 26.7 20 Ethnicity African American Caucasian 1 29 3.3 96.7 1 29 3.3 96.7 Formal Education 4 th th rough 8 th grade 9 th through 12 th grade 1 to 2 years of college 3 to 4 years of college > 5 years of college 3 16 4 4 3 10 53.3 13.3 13.3 10 1 8 10 10 1 3.3 26.7 33.3 33.3 3.3 Continued on the next page

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34 Table 3. Sample Characteristics (Contin ued) COPD Patient Sample COPD Caregiver Sample Variable Frequency Percent Frequency Percent Annual Household Income < $10,000 $10,001 to $24,999 $25,000 to $49,999 $50,000 to $74,999 $75,000 to $99,999 $100,000 Missing data 1 13 7 5 0 2 2 3.3 43.3 23.3 16.7 0 6.6 6.6 2 11 8 5 1 3 0 6.6 36.7 26.7 16.7 3.3 10 0 Smoking Never smoked Smoked Still Smoking Years smoked 0 years 5.1 to 15 years 15.1 to 25 years 25.1 to 35 years 35.1 to 45 years 45.1 to 55 years 55.1 to 65 years 65.1 to 70 years 2 28 4 2 2 9 5 4 6 1 1 6.6 93.3 13.3 6.6 6.6 30 16.7 13.3 20 3.3 3.3 10 17 5 10 2 2 12 1 0 0 0 33.3 56.7 16.7 33.3 6.6 6.6 40 3.3 0 0 0 Amount smoked 0 packs per day < 1 pack per day 1 pack per day 1.1 to 1.5 packs per day 1.6 to 2 packs per day 2.1 to 3 packs per day Missing data 2 1 12 5 5 5 0 6.6 3.3 40 16.7 16.7 16.7 0 10 3 4 2 7 1 3 33.3 10 13.3 6.6 23.3 3.3 10 Continued on the next page

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35 Table 3. Sample Characteristics (Continued) COPD Patient Sample COPD Caregiver Sample Variable Frequency Percent Frequency Percent Living Arrangement Alone With Spouse/Partner With Spouse/Partner & Children With Roommate With Parents Other 4 21 2 0 0 3 13.3 70 6.6 0 0 10 1 23 0 0 5 1 3.3 76.7 0 0 16.7 3.3 Relationship to Other Person in Dyad Spouse Son Daughter Father Mother Brother Sister Other 19 0 0 0 6 0 2 3 63.3 0 0 0 20 0 6.7 10 19 1 5 0 0 1 1 3 63.3 3.3 16.7 0 0 3.3 3.3 10 COPD Disease Severity Classification Moderate Severe/Very Sev ere FEV 1 % predicted 50 to 62 (moderate) 30 to 50 (severe) <30 (very severe) Missing data 6 24 6 10 10 4 20.0 80.0 20.0 33.3 33.3 13.3 Not measured Not measured Data Analysis Specific to Study Hypotheses Data collected in this study wa s used to construct a path analysis model depicting variables and their effect on dyspnea management in COPD. A variety of analysis

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36 methods was used to address the research hypotheses including correlation analysis and regression to examine the quantitati ve data, and cross case analysis was used to examine the qualitative data gathered. Structural equation modeling was used to test the conceptual model. Data were collected from the patient caregiver dyad subjects without knowledge of their dyad partners responses. Study patient subjects used a different data collection tool (Appendix A) than the study caregiver subjects (Appendix B). Data analysis for each study hypothesis is described individually in this section. Study Variables The dependant vari able in this study was perceived dyspnea management effectiveness (DE). The perception of DE was measured two different ways. First, using the Treatment for Breathing Problems Tool (TBP) to allow the collection of quantitative data describing the percept ion of the effectiveness of interventions used to manage dyspnea. Second, each subject was asked to include an answer in writing to a structured open ended question about dyspnea management. The TBP items were analyzed by subject group within each dyad and then were compared between patients and caregivers to assess differences between the dyad members. Patient TBP item scores ranged from 37.5 to 100 with a mean score of 67.15 (SD = 13.61). Caregiver TBP item scores ranged from 50 to 100 with a mean s core of 73.23 (SD = 12.85). No significant differences were found between patients and caregivers TBP item scores (p = 0.213 ) using the Wilcoxon Rank Sums method (Table 4). Each subject was asked to include an answer in writing to a structured open ended question: What one thing seems to help the most when you have (or the person has) a

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37 severe attack of shortness of breath? This qualitative approach was used to elicit the subjects response to this important question without constraints and to allow th em to write as little or as much as they wished. The independent variables in this study were mastery, negative affectivity, perceived dyspnea severity, and selected demographic variables including gender, education level, COPD disease severity, and the length of time caregiving had been provided. Each independent variable was measured using a specific data collection tool (Table 1). Mastery scores were analyzed by subject group within each dyad and then were compared between patients and caregivers to assess differences between the dyad members. Greater scores indicated a greater degree of mastery. Patient MS scores ranged from 18 to 35 with a mean score of 26.23 (SD = 5.14). Caregiver MS scores ranged from 17 to 35 with a mean score of 27.73 (SD = 5.46). No significant differences were found between patients and caregivers MS scores (p = 0.273) using the Wilcoxon Rank Sums method (Table 4). Negative Affectivity scores were analyzed by subject group within each dyad and then were compared betwee n patients and caregivers to assess differences between the dyad members. Higher scores indicated increased negative affectivity. Patient NA scores ranged from 0 to 9 with a mean score of 3.82 (SD = 2.79). Caregiver NA scores ranged from 0 to 9 with a m ean score of 3.39 (SD = 3.02). No significant differences were found between patients and caregivers NA scores (p = 0.422) using the Wilcoxon Rank Sums method (Table 4).

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38 Dyspnea Severity scores were analyzed by subject group within each dyad and then we re compared between patients and caregivers to assess differences between the dyad members. Patient DSI scores ranged from 0 to 37 with a mean score of 20.76 (SD = 9.09). Caregiver DSI scores ranged from 0 to 33 with a mean score of 22.90 (SD = 8.98). N o significant differences were found between patients and caregivers NA scores (p = 0.216) using the Wilcoxon Rank Sums method (Table 4). Demographic variables including gender, education level, COPD disease severity, and the length of time caregiving had been provided were measured using continuous and categorical methods. Frequencies were used for data reporting purposes (Table 3). Study Variables Comparisons Assessment of the variables dyspnea severity, perceived dyspnea intervention effectiveness, ma stery levels, and negative affectivity trait with the scales described in Chapter 3 yielded either continuous or categorical data. Wilcoxon Rank Sums method was selected as the preferred technique to compare the scale scores between the four variables. Th e results are depicted in T able 4. No significant differences were revealed between the COPD patients and caregivers ratings of the patients dyspnea severity (p = 0.216), perceived dyspnea intervention effectiveness (p = 0.213 ), their own mastery levels (p = 0.273), and their own negative affectivity trait scores (p = 0.422).

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39 Table 4. Comparison of Differences Between COPD Patients and Caregivers Variable Scores N Mean Sum of Scores Z p Caregiver 29 73.23 919.50 DE Patient 28 67.15 733.50 1.245 NS 0.213 Caregiver 29 32.8 870.0 DSI Patient 30 27.3 900.0 1.237 NS 0.216 Caregiver 30 33.0 989.5 MS Patient 30 28.0 840.5 1.096 NS 0.273 Caregiver 29 28.2 817.0 NA Patient 30 31.8 953.0 0.802 NS 0.422 Note: DE = Dyspnea Intervention Effectiveness score DSI = Dyspnea Severity Index score MS = Mastery Scale score NA = Negative Affectivity Trait score Z = Z statistic NS = No significant difference at the 0.05 level p = Level of significa nce Spearman correlation coefficients between the study variables were calculated. The results of the correlation analysis indicated that there were no significant differences between the patients and caregivers ratings of the study variables. Correla tions were then calculated by dyad. Table 5 illustrates the correlation coefficients calculated separately for patients and caregivers between their ratings of the patients dyspnea severity, perceived dyspnea intervention effectiveness, their own mastery levels, and their own negative affectivity trait scores. Significant correlation coefficients for the COPD patients are demonstrated between DSI scores and MS scores (r= 0.36, p=0.048) and between NA scores and MS

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40 scores (r= 0.53, p=0.002). Signific ant correlation coefficients for the caregivers are demonstrated between DSI scores and NA scores (r=0.40, p=0.037), between DSI scores and MS scores (r= 0.38, p=0.040 ), and between NA scores and MS scores (r= 0.45, p=0.015). Table 6 illustrates the co rrelation coefficients calculated for dyads ratings between the study variables. Significant correlation coefficients for the dyads are demonstrated between DSI scores and MS scores (r= 0.33, p= 0.01), and between NA scores and MS scores (r= 0.50, p= < 0.0001). Table 5. Correlation Coefficients Between Variables by Patients and Caregivers P DSI P DE P NA P MS C DSI C DE C NA C MS P DSI C DSI P DE 0.187 C DE 0.07 P NA 0.27 0.001 C NA 0.40* 0.09 P MS 0.36* 0.055 0.53* C MS 0.38* 0.09 0.45* Note: P DSI = Patient Dyspnea Severity Index score P DE = Patient Dyspnea Intervention Effectiveness score P NA = Patient Negative Affectivity Trait score P MS = Patient Mastery Scale score C DSI = Caregiver rated Patient D yspnea Severity Index score C DE = Caregiver rated Patient Dyspnea Intervention Effectiveness score C NA = Caregiver Negative Affectivity Trait score C MS = Caregiver Mastery Scale score = Significant at 0.05 level

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41 Table 6. Correlation Coefficie nts Between Variables by Dyad D DSI D DE D NA D MS D DSI D DE 0.14 D NA 0.25 0.10 D MS 0.33* 0.03 0.50* Note: D DSI = Dyad Dyspnea Severity Index score D DE = Dyad Dyspnea Intervention Effectiveness score D NA = Dyad Negative Affe ctivity Trait score D MS = Dyad Mastery Scale score = Significant at 0.05 level Study Hypothesis One Study hypothesis one stated: Perception of dyspnea severity is affected by mastery level, negative affectivity trait, and specific independent variabl es to include gender, education level, COPD severity classification, and length of time caregiving has been provided. Data analysis methods used to test this hypothesis included correlation and regression. Analysis of the correlations between the listed variables was determined. Table 5 depicts the relationships between DSI, MS, and NA by subject group within the dyads and Table 6 depicts the relationships measured for the dyads. Significant correlations were demonstrated between DSI and MS in both the patient (r= 0.36, p=0.048) and caregiver (r= 0.38, p=0.040) groups and between NA and MS in both the patient (r= 0.53, p=0.002) and caregiver (r= 0.45, p=0.015) groups. Significant correlations between DSI and NA were demonstrated in the car egiver group only (r=0.40, p=0.037).

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42 Multiple regression methods were used to predict patient DSI, caregiver DSI, and dyad DSI. Dyspnea Severity Index scores (DSI) were regressed on MS, NA, and the independent variables of age, gender, education, diseas e severity, and the time caregiving was provided. Step type regression revealed that patient DSI could be predicted by MS (p = 0.028) and that MS explained 19% of the variance in patient DSI (Figure 2). Step type regression revealed that caregiver DSI could not be predicted by any of the study variables (Figure 3). Step type regression revealed that dyad DSI could be predicted by MS (p = 0.005) and dyad group member (p = 0.04). The mean DSI score for caregivers when adjusting for MS was 23.39 and the mean DSI score for patients when adjusting for MS was 20.29. Together mastery (MS) and dyad group explained 21% of the variance in dyad DSI (Figure 4). Study Hypothesis Two Study hypothesis two stated: Perception of dyspnea intervention effectiveness is affected by mastery level, negative affectivity trait, and specific independent variables to include gender, education level, COPD severity classification, and length of time caregiving has been provided. Data analysis methods used to tes t this hypothesis included correlation and regression. Analysis of the correlations between the listed variables was determined. Table 5 depicts the relationships between DE, MS, and NA by subject group within the dyads and Table 6 depicts the relation ships measured for the dyads. Significant correlations were demonstrated between MS and NA in both the patient (r= 0.53, p=0.002) and caregiver (r= 0.45, p=0.015) groups. Significant correlations were also demonstrated between MS

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43 and NA in the patient caregiver dyad (r= 0.50, p= <0.0001). No significant correlations between DE and MS or between DE and NA were demonstrated. Multiple regression methods were used to predict patient, caregiver, and dyad DE. Dyspnea Intervention effectiveness scores (D E) were regressed on MS, NA, and the independent variables of age, gender, education, disease severity, and time caregiving was provided. Step type regression revealed that patient DE could not be predicted by the study variables. Step type regression re vealed that caregiver DE could be predicted by DSI (p = 0.003) and education (p = 0.048). Together DSI and education explained 42% of the variance in caregiver DE. Step type regression revealed that dyad DE could be predicted by age (p = 0.04). Age expl ained 9% of the variance in dyad DE. Study Hypothesis Three Study hypothesis three stated: Patients are more likely to report perceived effectiveness of the dyspnea interventions and the dyspnea management when there was agreement between the patient and caregivers assessment of the patients dyspnea severity, adjusting for mastery and negative affectivity trait. Data analysis methods used to test this hypothesis included correlation and cross case analysis. Previous data analysis revealed no significant differences between patients and caregivers DE (p = 0.213 ), DSI (p = 0.216), MS (p = 0.273), and NA (p = 0.422) scores. Therefore, the combined dyad data were analyzed. No significant correlations between DE and DSI, or between DE and MS, or between DE and NA were demonstrated in the patient caregiver dyad. Qualitative data was also utilized to determine the agreement between the patient and caregiver related to dyspnea intervention effectiveness. Each patient was given one

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44 structured w ritten question as part of the data collection questionnaire: What ONE thing helps you the most when you have a severe attack of shortness of breath? Each caregiver was also given one structured written question as part of the data collection questionna ire: What ONE thing helps the patient the most when he/she has a severe attack of shortness of breath? Consideration was given to the amount of time and energy needed to complete the data collection questionnaire. Incorporation of one structured open ended question was chosen to allow the subjects to respond as little or as much as they would like. Using one open ended question also limited the amount of time and energy needed to respond while allowing freedom of expression. Cross case analysis me thods were used to analyze the qualitative data. Responses of each dyad were compared as a separate case and then compared to other dyad cases to identify the degree of agreement between dyad members and to identify themes in the data. Complete data was obtained from both members of the patient caregiver dyad in 26 dyads (86.7%). Agreement between patient and caregiver statements was revealed in more than half of the dyads (57.7%). To ensure the credibility of the data analysis, triangulation of the da ta transcripts and identified themes was undertaken. First, the data were reviewed and categorized into themes by the primary investigator. Next, the data were sent to a qualitative research expert for independent review and categorization of themes. F our dyspnea management themes were revealed in the data. All of the identified themes were present in both the patient and the caregiver data. Dyspnea management themes included changing activity, relaxation, inhaled medication use, and altering

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45 0 10 20 30 40 50 60 70 80 90 T1* T7* T8* T9* T12* T14* T15* T18 T22* T27* Freq % effective breathin g pattern. Items corresponding to these themes were also among the highest effectiveness ratings on the TBP tool. Figure 2. Topmost Choices of Treatment Effectiveness by Dyad _____________________________________________________________________________ _________ ______________________________________________________________________________ Note: T = TBP treatment item Freq = Number of subjects who chose item % effective = Treatment effectiveness mean percentage rating = TBP item corresponding to qualitative dyspnea management themes Figure 2 illustrates the treatment items on the TBP tool that were selected by more than 50% of the subjects and also have the highest effectiveness ratings. Nine of the ten most frequently chosen items on the TBP to ol correspond to each of the four themes identified in the qualitative data. The TBP treatment items that correspond to the four qualitative themes were (see Figure 5): pursed lip breathing (T1), IPPB or inhalers

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46 (T7), oxygen (T8), self control of medications (T22), sit down (T9), keep still (T12), stop or modify activity to conserve energy (T14), move slower (T15), and relaxation (T27). One item among the topmost TBP items selected by the subjects, get fresh air/use fan or air conditi oner (T18), was present only once in the qualitative data. The theme of changing activity included altering an activity when the dyspnea occurs. Excerpts from the patient data used to describe this theme include sitting down, sit and lean forward, stop, decrease my activity, and sit quietly. Excerpts from the caregiver data used to describe this theme include stands at counter, lean on hands rounding chest & shoulders, stay still, sits still, sits down, laying down, rest, and re sting. The theme of relaxation included use of relaxation techniques when the dyspnea occurs. Excerpts from the patient data used to describe this theme included stay as quiet as possible, relax, relax, try to stay calm, and sit quietly and relax. Excerpts from the caregiver data used to describe this theme included try to relax, relaxation, and try to make him relax. The theme of inhaled medication use included use of medication administered via inhalation when the dyspnea occu rred. Excerpts from the patient data used to describe this theme included breathing treatment, treatment, O 2 and Combivent, take a puff of Albuterol, use inhaler or nebulizer, use the nebulizer which helps very much, have oxygen on, and i nhalers then move to the nebulizer. Excerpts from the caregiver data used to describe this theme included taking a treatment of nebulizer, using inhaler, put on a second oxygen canister and Advair.

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47 The theme of altering breathing pattern i ncluded conscious effort to change the breathing pattern when the dyspnea occurs. Excerpts from the patient data used to describe this theme included pursed lip breathing, take deep breaths, concentrate on breathing thru nose a few minutes, rhythmi c coughing to clear sputum, and work hard to breathe shorter. Excerpts from the caregiver data used to describe this theme included pursed lip breathing, has to be reminded to close mouth & stop gasping air, breathe deep, slow, in through your nose and breathe slowly. Study Hypothesis Four Study hypothesis four stated: There is an indirect relationship between negative affectivity trait scores and reported perceived effectiveness of the dyspnea interventions and the dyspnea management. Corr elation d ata analysis methods were used to test this hypothesis. First, dyad members were analyzed separately. Patients results indicated no significant correlation between NA and DE (r = 0.001, p = 0.99) and caregivers results indicated no significant c orrelation between NA and DE (r = 0.09, p = 0.64). Previous data analysis revealed no significant differences between patients and caregivers NA (p = 0.422) and DE (p = 0.213 ) scores. Next, dyad members were analyzed together and using the combined data there was no significant correlation between dyad NA and DE scores (r = 0.10, p = 0.47). Conceptual Model Testing Regression analysis was used to test the three conceptual models. First, a model was formulated using the patient data alone (Figure 3). Second, a model was formulated using the caregiver data alone (Figure 4). Finally, a model was formulated using the

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48 combined dyad data (Figure 5). The chi square test for degree of fit was not significant in any of the models. Each model is illus trated separately. The patient model demonstrated significant effects between DSI and NA (p = 0.04) and between DE and gender (p = 0.04), education level (p = 0.015), and disease severity (p = 0.026). The caregiver model demonstrated no significant effe cts among the study variables. The dyad model demonstrated significant effects between DSI and the length of time caregiving had been provided (p = 0.013), between DE and DSI (p = 0.004), and between DE and the length of time caregiving had been provide d (p = 0.03).

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49 a = Observed variable b = Latent variable = Observed relationship = Unmeasured relationship Figure 3. COPD Patient Model a Mastery was treated as a covariate and controlled for in regression analyses b Negative affectivity trait was treated as a covariate and controlled for in regression analyses = Significant at 0.05 level MASTERY a PERCEIVED DYSP NEA INTERVENTION EFFECTIVENESS NEGATIVE AFFECTIVITY TRAIT b PERCEIVED DYSPNEA SEVERITY DEMOGRAPHIC VARIABLES Gender Education COPD class LOT e .90 e .86 0.28 0.50 0.04* 0.14 0.051 0.10 0.04* 0.055 0.087 0.12 0.015* 0.026* 0.168 NURSING & OTHER HEALTHCARE PROVIDERS

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50 a = Observed variable b = Latent variable = Observed relationship = Unmeasured relationship Figure 4. Family Caregiver Model a Mastery was treated as a covariate and controlled for in regression analyses b Negative affectivity trait was treated as a covariate and controlled for in regression analyses = Significant at 0.05 level PERCEIVED DYSP NEA INTERVENTION EFFECTIVENESS NEGATIVE AFFECTIVITY TRAIT b PERCEIVED DYSPNEA SEVERITY DEMOGRAPHIC VARIABLES Gender Education LOT e .82 e .84 0.437 0.11 0.27 0.48 0.15 0.197 0.18 0.0207 0.28 0.037 0.45 MASTERY a NURSING & OTHER HEALTHCARE PROVIDERS

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51 a = Observed variable b = Latent variable = Observed relationship = Unmeasured relationship Figure 5. COPD Patient Caregiver Dyad Model a Mastery was treated as a covariate and controlled for in regression analyses b Negative affectivity trait was treated as a covariate and controlled for in regression analyses = Significant at 0.05 level PERCEIVED DYSPNEA INTERVENTION EFFECTIVE NESS NEGATIVE AFFECTIVITY TRAIT b PERCEIVED DYSPNEA SEVERITY DEMOGRAPHIC VARIABLES Gender Education COPD class LOT e .89 e .87 0.246 0.347 0.132 0.29 0.004* 0.08 0.058 0.055 0.086 0.013* 0.098 0.089 0.03* MASTERY a NURSING & OTHER HEALTHCARE PROVIDERS

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52 CHAPTER FIVE Discussion Chapter five includes a discussion of the research findings and a comparison of results with previous studies. Finally, conclusions and recommendations for further research and clinical practice are presented. Discussion of Findings Sample Thirty COPD patient caregiver dyads meeting the eligibility criteria agreed to participate in the study. Recruitment of subjects was limited for a variety of reasons. Initially recruitment of subjects from an acute care inpatient setting as well as the pulmonary clinic setting was planned. Inpatient subjects were excluded due to rapid patient admission and discharge rates of the desired study popu lation in the acute care site. A total of 155 pulmonary clinic patients who met the eligibility criteria were approached to participate in the study. Of the eligible clinic patients, 125 were excluded because they declined to participate, did not have a caregiver, did not have pulmonary function test results in their medical record data, or did not attend the appointment time. The majority of the COPD patient sample was elderly, female, Caucasian, well educated, married, living with their caregiver, of middle class socioeconomic status, had a mean 57.9 pack year smoking history and had severe or end stage lung disease with the mean retrievable forced exhaled volume in one second (FEV 1 ) of 38.2% predicted, indicating

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53 severe obstruction. The majority o f the caregiver sample was elderly, female, Caucasian, well educated, married, living with the patient, of middle class socioeconomic status, and 60% had a mean 43.7 pack year smoking history. The characteristics of the patient caregiver sample are repr esentative of the population in the region where the study was conducted. Inclusion of a large proportion of elderly women in this study is reflective of the national increase in females with COPD and is an understudied COPD population. Limitations of th e sample that limit the generalizabiltiy of study findings include limited number of subjects from diverse ethnicities, and inclusion of subjects from similar education and socioeconomic backgrounds. Findings in this study may be generalizable to elderly Caucasian women with end stage COPD. Correlations Among Variables Wilcoxon Rank Sums method was used to compare the differences in the variables of dyspnea severity, perceived dyspnea intervention effectiveness, mastery levels, and negative affectivity trait scores between the COPD patients and caregivers. No statistically significant differences were found between COPD patients and caregivers on any of these variables. These findings indicate that patients and caregivers have very similar perceptions of the patients dyspnea severity and they have very similar perceptions about what treatments are effective for the patients dyspnea. These findings also indicate that patients and caregivers have very similar abilities to manage daily events related to the patients dyspnea and that they have very similar world views. The majority of the dyads were spouses/partners (63.3%). It is possible that these findings represent the effect of long durations of cohabitation between the dyads. Perhaps the

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54 longer the time living together, the more perceptive they are of each other, the more similar the management of daily events is, and the more similar the view of the world. Another possibility is that over time, the progressive severity of patients COPD and it s effect on daily living for the patient and the caregiver, coping and attitudes become colored by the stresses and become more negative in nature; perhaps they are a product of their environment. Spearman correlation coefficients between the study variabl es were calculated for patients, caregivers, and dyad. Correlation coefficients for the COPD patients indicated a significant negative correlation between dyspnea severity and mastery, and also a significant negative correlation between negative affectivi ty and mastery. Correlation coefficients for the caregivers indicated a significant positive correlation between dyspnea severity and negative affectivity, a significant negative correlation between dyspnea severity and mastery, and a significant negative correlation between negative affectivity and mastery. Because no statistically significant differences were found between COPD patients and caregivers on any of the study variables, correlations were calculated by dyad also. Examination of correlations for the dyads indicated significant negative correlation coefficients between dyspnea severity and mastery and between negative affectivity and mastery. These findings indicate that among the patients and caregivers individually, low levels of mastery cor responded to increased perceptions of dyspnea severity, low levels of mastery corresponded to high levels of negative affectivity, high levels of dyspnea severity corresponded to high levels of negative affectivity. Therefore the more severe the patients dyspnea, the more difficulty with managing daily activities and the more negative the world view. This may again be due

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55 to the progressive deterioration of the patients health status over time and its consequential effect on the patient and caregiver. Qualitative data methods were used to compare the differences between COPD patients and caregivers perceptions of effective dyspnea management strategies. Four effective dyspnea management strategy themes were identified using cross case analysis. The four effective dyspnea management strategy themes that emerged from both the patients and the caregivers were: changing activity, relaxation, inhaled medication use, and altering breathing pattern. These findings are consistent with the topmost effect ive dyspnea treatment items selected by more than half of the subjects on the TBP tool. The results of the qualitative study are congruent with the quantitative measures of dyspnea intervention effectiveness. Conceptual Model Testing Proposed relationshi ps between the study variables were illustrated in the conceptual model constructed for this study (Chapter 2, p. 17). Regression analyses were used to test the conceptual model for patients, caregivers, and dyads. Regression analyses in the patient mode l revealed significant direct effects between dyspnea severity and negative affectivity (p = 0.04), and between dyspnea intervention effectiveness and gender (p = 0.04), education level (p = 0.015), and COPD disease severity (p = 0.026) in the patient mod el (Figure 3). Regression analyses in the dyad model revealed significant direct effects between dyspnea severity and the length of time caregiving had been provided (p = 0.013), between dyspnea severity and dyspnea intervention effectiveness (p = 0.004), and between dyspnea intervention effectiveness and the length of time caregiving had been provided (p = 0.03) (Figure 5).

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56 The results in the patient model indicate several important effects between the study variables. First, the greater the negative a ffectivity, the greater the perception of dyspnea severity This result is consistent with previous studies that indicate exaggeration of symptom perceptions, regardless of actual illness severity, in persons with high negative affectivity (de Ridder et al ., 2004; Kolk et al., 2003; Singer, et al., 2001). Second, same gender patient caregiver dyads had greater perceptions of dyspnea intervention effectiveness. This result is counterintuitive based on the sample characteristics and is probably spurious in nature. Third, the higher the education level, the greater the perception of dyspnea intervention effectiveness. As expected, the more educated the subject, the more analytical or logical they are about the effectiveness of what are perceived to be appro priate treatments. Finally, the greater the COPD severity, the lower the perception of dyspnea intervention effectiveness. This is also an expected finding, as the disease progresses, so does the dyspnea severity and therefore the interventions have decr easing effectiveness. The results in the dyad model indicate several additional important effects between the study variables. First, the longer the length of time caregiving had been provided, the greater the perception of dyspnea severity. It is logic al to infer that the longer time caregiving had been provided, the more the disease had progressed and would result in greater severity of the patients dyspnea Second, the greater the perception of dyspnea severity, the greater the perception of dyspnea intervention effectiveness. This finding may indicate that persons with more severe dyspnea have had more time to discover effective treatment strategies and therefore can manage the dyspnea more effectively. Finally, the longer the length of time caregiv ing had been

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57 provided, the greater the perception of dyspnea intervention effectiveness. This finding may also logically indicate that the longer time caregiving had been provided, the more the disease had progressed and the experienced the patients and c aregivers are at implementing effective treatment strategies. The findings of this study indicate that when a caregiver of a COPD patient is present, he or she is able to effectively evaluate and manage the patients dyspnea. Another recent study also fou nd that caregivers are reliable in the assessment of patients dyspnea (Moody & McMillan, 2003). However, there is also a conflicting study that indicates that caregivers are not able to accurately assess the patients dyspnea (McMillan & Moody, 2003). I n this dissertation study no significant differences were found between caregivers and patients ratings of the effectiveness of dyspnea treatment strategies when tested quantitatively or qualitatively. Effective dyspnea management strategies identified by both patients and caregivers included changing activity, relaxation, inhaled medication use, and altering breathing pattern. The perception of the degree of ability to manage day to day events specifically related to the patients breathing difficult y, as measured by the Mastery scale (MS), was not significantly different for patients or caregivers. No significant differences were found between caregivers and patients MS scores. The majority of both patients and caregivers indicated that overall t hey were able to manage daily events specific to the patients breathing difficulty a good bit of the time to some of the time. The all encompassing tendency to experience perceived distress including aversive moods, as measured by the Negative Affec tivity Trait tool (NA), was not

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58 significantly different for patients or caregivers. No significant differences were found between caregivers and patients NA scores. The Mean NA scores for patients was 3.82 and mean NA scores for caregivers was 3.39 on a scale of 0 to 9, with 9 being the highest negative affectivity, indicating low negative affectivity among the dyads. Studies of aversive mood states for patients and caregivers are plentiful in the literature. It is interesting to note that although the caregivers had similar NA scores as the patients, their ability to accurately assess the patients dyspnea and treatment effectiveness was not hindered. Perception of dyspnea severity, as measured using the Dyspnea Severity Index Tool (DSI), was not significantly different for patients or caregivers. This indicates that caregivers could effectively and accurately measure the dyspnea level of the patient. Previous studies in the literature that have found caregiver assessment of dyspnea to be accura te are rare. The study by Moody & McMillan (2003) was the only other current study with findings indicating accurate caregiver dyspnea assessment skills. Interrelationships between study variables and the perception of dyspnea intervention effectivenes s were revealed. Dyspnea intervention effectiveness was found to be positively influenced by gender and education, and negatively influenced by COPD disease severity in the patient sample. This indicates that same gender patient caregiver dyads and the h igher the education, the higher the dyspnea effectiveness perception in the study patient sample. Dyspnea intervention effectiveness was found to be positively influenced by the length of time caregiving had been provided (mean = 25.2 years) and by percei ved dyspnea severity in the dyad sample. This indicates that the longer the time caregiving had been provided and the more congruent the perceived dyspnea severity and

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59 dyspnea effectiveness perception in the study dyad sample. It is important to note tha t the mean length of time caregiving had been provided in this study sample was considerably longer than the mean of 12 years in previous reports in the literature (Cain & Wicks, 2000; Cossette & Levesque, 1993; Leidy & Traver, 1996; Ross & Graydon, 1997; Sexton, 1984; Sexton & Munro, 1985; Wicks, 1997). This increased duration of caregiving is due to the study subjects difficulty in separating caregiving and marriage; they were not able to accurately pinpoint the time that caregiving for the patient bega n. Interrelationships between study variables and the perception of dyspnea severity were revealed. The perception of dyspnea severity was found to be significantly influenced by negative affectivity in the patient sample. This indicates that the high er the negative affectivity, the higher the perception of dyspnea severity in the study patient sample. As expected, perception of dyspnea severity was found to be positively correlated to the length of time caregiving had been provided in the dyad sample This association occurs because over time, the disease severity worsens which increases the dyspnea severity. Step type regression analyses revealed partial predictability of some of the variables. Patient dyspnea severity was found to be predicted by mastery and mastery was found to explain 19% of the variance in patient dyspnea severity. Caregiver dyspnea intervention effectiveness was found to be predicted by dyspnea severity and education, and together they were found to explain 42% of the variance in caregiver dyspnea intervention effectiveness. Dyad dyspnea severity was found to be predicted by mastery and dyad group member, and that together they were found to explain 21% of the variance in dyad dyspnea severity. Dyad dyspnea intervention effec tiveness was found to

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60 be predicted by age and that age was found to explain 9% of the variance in dyad dyspnea intervention effectiveness. Conclusions The findings of this study indicate that family caregivers of elderly patients with end stage COPD are able to accurately assess the patientsdyspnea. There were no statistically significant differences in the ratings of the patients dyspnea by patients or caregivers. Family caregivers of elderly patients with end stage COPD are able to accurately identi fy specific treatment strategies to effectively manage the patients dyspnea. Both patients and caregivers identified the same clusters of treatments that they reported to be effective in dyspnea management including: changing activity, relaxation, inhale d medications, and purposeful alterations of breathing pattern. Perceptions of dyspnea severity and dyspnea intervention effectiveness are influenced by many factors. Factors that influence dyspnea severity perceptions include the length of time caregivin g has been provided, negative affectivity, and mastery. Factors that influence dyspnea intervention effectiveness perceptions include the length of time caregiving has been provided, dyspnea severity, COPD severity, and education level. Recommendations for Further Research Research related to the COPD patient caregiver dyad and dyspnea management is very limited in the literature. Current studies reveal conflicting conclusions about caregivers abilities to accurately assess the patients dyspnea. Care givers in this study were found to be accurate in the assessment of the patients dyspnea as well as accurate

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61 in the selection of effective treatments for the patients dyspnea. Nurses and other healthcare providers can learn from them. Research explorin g the potential benefits of incorporating caregivers along with healthcare providers to determine and implement effective dyspnea management strategies would be illuminating. Future research studies could utilize the effective dyspnea treatment strategies identified by these study subjects as interventions with other groups of COPD patients. The majority of previous COPD dyspnea research was done with male patients. The sample in this study is mostly elderly women and a large number of elderly women were excluded from participation purely due to the lack of caregiver support. This dissertation may be one of the first studies of dyspnea management in community dwelling elderly women with advanced COPD. Rates in the United States for females with COPD have more than doubled between the years 1980 and 2000. In addition, in the year 2000 the number of female COPD related deaths was greater than the number of male COPD related deaths in this country (National Heart, Lung, and Blood Institute, 2003). Elderly women with COPD who do not have caregivers are at significant risk of increased morbidity and mortality. Research in the area of females with COPD and exploration of community support strategies for these women would be beneficial to promote optimal healt h and quality of life. Recruitment of patients from diverse populations was a challenge. This study sample was 96.7% Caucasian due to convenience sampling techniques. The four patients who declined to participate in the study were African Americans. All patients of all ethnicities in the acute care setting were excluded due to rapid admission and discharge rates. Although predominance of Caucasian subjects (96.7%) in this study is

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62 very similar to previous studies, the findings should not be generaliz ed to all ethnicities. Dyspnea management research in diverse populations should be pursued to determine if different strategies would be more effective in different populations. Research strategies that may include ethnically diverse patients would be t o replicate this study with patients in rural and intercity clinics or other healthcare settings. This would assist nurses and other healthcare providers to learn about strategies to effectively manage dyspnea that are tailored to the needs or preference s in persons of various ethnicities. Exploring other variables that may influence dyspnea management effectiveness should also be undertaken. Qualitative exploratory research studies using focus groups of men and women of diverse ethnicities, socioeco nomic, and educational level groups, may assist in the identification of additional variables that influence dyspnea management effectiveness. Variables specific to one population group or another may be revealed. This would also assist nurses and other healthcare providers to effectively manage dyspnea in various populations. The limited geographic location and homogeneity of the sample do not allow generalizability of the findings to all persons with COPD. However, the findings in this study may be gen eralizable to elderly Caucasian women with end stage COPD. Replication of this study in other geographic regions, with diverse COPD patient caregiver groups, will add to the scientific knowledge base in this area of research. Dissemination of the finding s presented in this dissertation study, through national and international publications or presentations will also help to increase awareness of the study problem and perhaps encourage other researchers to replicate the study with more diverse study partic ipants.

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63 References American Thoracic Society. (1999). Dyspnea: Mechanisms, Assessment, and Management: A consensus statement. American Journal of Respiratory and Critical Care Medicine, 159, 321 340. American Thoracic Society. (1998). Research p riorities in respiratory nursing. American Journal of Respiratory and Critical Care Medicine, 158, 2006 2015. Bandura, A. (1977). Self efficacy: Toward a unifying theory of behavioral change. Psychological Review, 84 (2), 191 215. Bandura, A. & Ada ms, N. (1977). Analysis of self efficacy theory of behavioral change. Cognitive Theory & Research, 1 (4), 287 310. Barnes, P. (2000). Chronic obstructive lung disease. The New England Journal of Medicine, 343 (4), 269 280. Bergs, D. (2002). The h idden client women caring for husbands with COPD: their experience of quality of life. Journal of Clinical Nursing, 11, 613 621. Bollen, K. (1989). Structural Equations with Latent Variables. New York: John Wiley and Sons. Brown, M., Carrieri, V., Janson Bjerklie, S., & Dodd, M. (1986). Lung cancer and dyspnea: The patients perception. Oncology Nursing Forum, 13 (5), 19 24. Cain, C. & Wicks, M. (2000). Caregiver attributes as correlates of burden in family caregivers coping with chronic obstructive pulmonary disease. Journal of Family Nursing, 6 (1), 46 68. Carrieri, V. & Janson Bjerklie, S. (1987) Response to "Dyspnea: a clinical perspective". Scholarly Inquiry for Nursing Practice 1 (1):87 92. Cossette, S. & Levesque, L. (1993) Caregiving tasks as predictors of mental health of wife caregivers of men with chronic obstructive pulmonary disease. Research in Nursing and Health, 16 251 263.

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64 Denollet, J. (2001). Type D personality. A potential risk factor refined. Journal of Psychosomatic Research, 51 (3), 465 468. de Ridder, D., Fournier, M., & Bensing, J. (2004). Does optimism affect symptom report in chronic disease? What are its consequences for self care behaviour and physical functioning? Journal of Psy chosomatic Research, 56 (3), 341 350. DeVito, A. (1990). Dyspnea during hospitalization for acute phase of illness as recalled by patients with chronic obstructive pulmonary disease. Heart & Lung, 19 (2), 186 191. Erdfelder, E., Faul, F., & Buchner, A. (1996). GPOWER: A general power analysis program. Behavior Research Methods, Instruments, and Computers, 28 ,1 11. Gift, A. (1987). Dyspnea: a clinical perspective. Scholarly Inquiry for Nursing Practice 1 (1), 73 85. Gift, A. (1989). Validation of a vertical visual analogue scale as a measure of clinical dyspnea. Rehabilitation Nursing, 14 (6), 323 325. Gift, A. & Cahill, C. (1990). Psychophysiologic aspects of dyspnea in chronic obstructive pulmonary disease: a pilot study. Heart Lung, 1 9 (3), 252 257. Graydon, J. & Ross, E. (1995). Influence of symptoms, lung function, mood, and social support on level of functioning of patients with COPD. Research in Nursing & Health, 18, 525 533. Grossman, S., Sheidler, V., Swedeen, K., Mucensk i, J., & Piantadosi, S. (1991). Correlation of patient and caregiver ratings of cancer pain. Journal of Pain and Symptom Management, 6 (2), 53 57. Guyatt, G., Walter, S., & Norman, G. (1987). Measuring change over time: Assessing the usefulness of evaluative instruments. Journal of Chronic Disease, 40 (2), 171 178. Huberman, A. & Miles, M. (1998). Data management and analysis methods. In N.K. Denzin & Y.S. Lincoln (Eds.), Strategies of Qualitative Inquiry (pp. 179 210). Thousand Oaks, CA: S age Publications, Inc. Jang, Y., Haley, W., Small, B., & Mortimer, J. (2002). The role of mastery and social resources in the associations between disability and depression in later life. Gerontologist;42 (6), 807 813. Janson Bjerklie, S., Carrie ri Kohlman, V., & Hughes, M. (1986). The sensations of pulmonary dyspnea. Nursing Research, 35 (3), 154 159.

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65 Kolk, A., Hanewald, G., Schagen, S., & Gijsbers van Wijk, C. (2003). A symptom perception approach to common physical symptoms. Social Sci ence Medicine, 57 (12), 2343 2354. Kressin, N., Spiro, A., & Skinner, K. (2000). Negative affectivity and health related quality of life. Medical Care, 38 (8), 858 867. Lareau, S., Carrieri Kohlman, V., Janson Bjerklie, S., & Roos, P. (1994). Dev elopment and testing of the pulmonary functional status and dyspnea questionnaire (PFSDQ). Heart & Lung, 23 (3), 242 250. Lareau, S., Meek, P., Press, D., Anholm, J., & Roos, P. (1999). Dyspnea in patients with chronic obstructive pulmonary disease: Does dyspnea worsen longitudinally in the presence of declining lung function? Heart & Lung, 28 (1), 65 73. Lareau, S., Meek, P., & Roos, P. (1998). Development and testing of the modified version of the pulmonary functional status and dyspnea question naire (PFSDQ M). Heart & Lung, 27 (3), 159 168. Larson, J., Kapella, M., Wirtz, S., Covey, M., & Berry, J. (1996). Reliability and validity of the functional performance inventory in patients with moderate to severe chronic obstructive pulmonary disea se. Journal of Nursing Measurement, 6 (1), 55 73. Leidy, N. & Traver, G. (1996). Adjustment and social behavior in older adults with chronic obstructive pulmonary disease: the familys perspective. Journal of Advanced Nursing, 23 252 259. Lobchuk, M., Kristjanson, L., Degner, L., Blood, P., & Sloan, J. (1997). Perceptions of symptom distress in lung cancer patients: I. Congruence between patients and primary family caregivers. Journal of Pain and Symptom Management, 14 (3), 136 146. Lush, M., Janson Bjerklie, S., Carrieri, V., & Lovejoy, N. (1988). Dyspnea in the ventilator assisted patient. Heart & Lung, 17 (5), 528 535. Mahler, D., Harver, A., Rosiello, R., & Daubenspeck, J. (1989). Measurement of respiratory sensation in interstitial lung disease: Evaluation of clinical dyspnea ratings and magnitude scaling. Chest, 96 (4), 767 771. Mahler, D., Weinberg, D., Wells, C., & Feinstein, A. (1984). The measurement of dyspnea: Contents, interobserver agreement, and physiologic correlates of two new clinical indexes. Chest, 85 (6), 751 758.

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66 McCarley, C. (1999). A model of chronic dyspnea. Image: Journal of Nursing Scholarship, 31 (3), 231 236. McMillan, S. & Moody, L. (2003). Hospice patient and caregiver congruence in reporting patients symptom intensity. Cancer Nursing, 26 (2), 113 118. Moody, L. (1990). Measurement of psychophysiologic response variables in chronic bronchitis and emphysema. Applied Nursing Research, 3 (1), 36 38. Moody, L., Lowry, L., Yarandi, H., & Voss, A. (1997). Psychophysiologic predictors of weaning from mechanical ventilation in chronic bronchitis and emphysema. Clinical Nursing Research, 6 (4), 311 333. Moody, L., McCormick, K., & Williams, A. (1990). Disease and symptom severity, functio nal status, and quality of life in chronic bronchitis and emphysema (CBE). Journal of Behavioral Medicine, 13 (2), 297 306. Moody, L. & McMillan, S. (2003). Dyspnea and quality of life indicators in hospice patients and their caregivers. Health and Quality of Life Outcomes, 1 (9). National Heart, Lung, and Blood Institute. (2003). Chronic obstructive pulmonary disease data fact sheet (NIH Publication No. 03 5229). Bethesda, MD: U.S. Government Printing Office. National Heart, Lung, and Blood Institute/World Health Organization. (2003, July). The GOLD Workshop Panel Global Initiative for Chronic Obstructive Lung Disease. Global strategy for the diagnosis, management and prevention of chronic obstructive pulmonary disease. Retrieved J uly 1, 2004 from: http://www.goldcopd.com/ National Institute of Nursing Research (2000). Focus on NINR. Retrieved May 25, 2002 from: htt p://www.nih.gov/ninr/research/diversity/mission.html Nield, M., Kim, M., & Patel, M. (1989). Use of magnitude estimation for estimating the parameters of dyspnea. Nursing Research, 38 (2),77 80. Powers, J., and Bennett, S. (1999). Measurement of d yspnea in patients treated with mechanical ventilation. Heart & Lung, 8 (4), 254 261. Ross, E. & Graydon, J. (1997). Impact on the wife of caring for a physically ill spouse. Journal of Women and Aging, 9 (4), 23 35. SAS/STAT Users Guide (4 th ed., Vol. 1). (1990). SAS Institute Inc. Cary, NC.

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67 Schecter, A. & Kamholz, S. (1990). Assessing acute dyspnea. Emergency Medicine, 22 (9), 18 24. Sexton, D. (1984). The supporting cast wives of COPD patients. Journal of Gerontological Nursing, 10 (2), 82 85. Sexton, D. & Munro, B. (1985). Impact of a husbands chronic illness (COPD) on the spouses life. Research in Nursing and Health, 8 83 90. Singer, H., Ruchinskas, R., Riley, K., Broshek, D., & Barht, J. (2001). The psychological i mpact of end stage lung disease. Chest, 120 (4), 1246 1252. Sturesson, M. & Branholm, I. (2000). Life satisfaction in subjects with chronic obstructive pulmonary disease. Work, 14 (2), 77 82. Taylor, E., Ferrell, B., Grant, M., & Cheyney, L. (1993) Managing cancer pain at home: The decisions and ethical conflicts of patients, family caregivers, and homecare nurses. Oncology Nursing Forum, 20 (6), 919 927. Thomas, L. (1992). Dyspnea assessment of mechanically ventilated patients in the Intensi ve care unit. Unpublished masters thesis, University of South Florida, Tampa. Webb, M., Moody, L., & Mason, L. (2000). Dyspnea assessment and management in hospice patients with pulmonary disorders. American Journal of Hospice and Palliative Care 17 (4), 259 264. Wewers, M. & Lowe, N. (1990). A critical review of visual analog scales in the measurement of clinical phenomena. Research in Nursing & Health, 13, 227 236. Wicks, M. (1997). A test of the Wicks family health model in families co ping with chronic obstructive pulmonary disease. Journal of Family Nursing, 3 (2), 189 212.

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68 Appendices

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69 Appendix A: COPD Patient Data Collection Tool

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70 Appendix A: COPD Patient Data Collection Tool (co ntinued)

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71 Appendix A: COPD Patient Data Collection Tool (continued)

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72 Appendix A: COPD Patient Data Collection Tool (continued)

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73 Appendix A: COPD Patient Data Collecti on Tool (continued)

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74 Appendix A: COPD Patient Data Collection Tool (continued)

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75 Appendix A: COPD Patient Data Collection Tool (continued)

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76 Appendix A: COPD Pa tient Data Collection Tool (continued)

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77 Appendix A: COPD Patient Data Collection Tool (continued)

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78 Appendix A: COPD Patient Data Collection Tool (continued)

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79 Appendix A: COPD Patient Data Collection Tool (continued)

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80 Appendix A: COPD Patient Data Collection Tool (continued)

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81 Appendix B: Caregiver Data Collection Tool

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82 Appendix B: Caregiver Data Collection Tool (continued)

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83 Appendix B: Caregiver Data Collection Tool (continued)

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84 Appendix B: Caregiver Data Collection Tool (continued)

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85 Appendix B: Caregiver Data Collection Tool (continued)

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86 Appendix B: Caregi ver Data Collection Tool (continued)

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87 Appendix B: Caregiver Data Collection Tool (continued)

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88 Appendix B: Caregiver Data Collection Tool (continued)

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89 Appendix B: Caregiver Data Collection Tool (continued)

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90 Appendix B: Caregiver Data Collection Tool (continued)

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91 Appendix B: Car egiver Data Collection Tool (continued)

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92 Appendix B: Caregiver Data Collection Tool (continued)

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About the Author Loris A. Thomas received an Associate of Scie nce in Nursing degree from Broward Community College in Ft. Lauderdale, Florida in 1977. She earned a Baccalaureate of Science in Nursing from the University of West Florida, in Pensacola, Florida in 1980 and a Masters of Science in Nursing was earned fr om the University of South Florida in 1992. Loris has held national certifications in critical care nursing and as a Medical Surgical Clinical Nurse Specialist. Current national certifications include Adult Nurse Practitioner and Acute Care Nurse Practi tioner. Her specialty is acute and critical care nursing, focusing on the nursing management of acute and chronic pulmonary disease. Loris dissertation research was supported by two nursing research grants; one from the Florida Nurses Foundation and one from the Sigma Theta Tau International Honor Society of Nursing, Alpha Beta chapter. She is currently a Clinical Assistant Professor at the University of Florida College of Nursing.


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COPD dyspnea management by family caregivers
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ABSTRACT: An estimated 14 million people in the United States currently have chronic obstructive pulmonary disease (COPD). This nonreversible illness causes progressively decreasing airflow and is manifested by frequent episodes of acute and chronic dyspnea. The purposes of this study were: 1) to examine the relationships between mastery (MS), negative affectivity trait (NA), perceptions of patient dyspnea severity (DSI), and perceptions of which dyspnea interventions are effective (DE) among family caregiver-COPD patient dyads and 2) to examine the degree of agreement between the dyad members regarding dyspnea assessment and management. The study subjects were elderly (patients = 71.6 years, caregivers = 63.4 years), mostly women (patients = 60%, caregivers = 63.3%), Caucasian (96.7%), and patients had severe/very severe COPD (80%). No significant differences were found between family caregivers' and patients' ratings of MS, NA, DSI, or DE.The most effective dyspnea management strategies identified by both dyad members included changing activity, relaxation, inhaled medication use, and altering breathing pattern. The study conceptual model was tested to identify the interrelationships between the study variables. Significant effects in the patient model were between DSI and NA (p = 0.04), DE and gender (p = 0.04), DE and education (p = 0.015), and between DE and disease severity (p = -0.026). The caregiver model demonstrated no significant effects between the study variables. Significant effects in the dyad model were between DSI and the length of time caregiving had been provided (LOT, mean = 25.2 years) (p = 0.013), DE and DSI (p = 0.004), and between DE and LOT (p = 0.03). Gender, education, disease severity, LOT, and DSI influenced DE. Negative affectivity and LOT (mean = 25.2 years) influenced DSI.The findings of this study indicate that when the family caregiver of a patient with COPD is present, he or she is able to provide valid and reliable assessments of the patient's dyspnea severity. During acute exacerbations of dyspnea, persons with COPD are often unable to speak for themselves and these experienced family caregivers may be valuable partners with nurses and other healthcare providers to represent the patient's responses and needs.
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