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III II]‘5II:I:‘U‘ III], ; :l’ ,I: Uh! """ ]‘i] 2H II'. “I“ 2]",1“ I ']]]].H I" “VIII! “ .z"'2:"" : - II: I I: ::::.:I:: 'I"i::II:::I’:I IIIII III: III“? 3:: ,I" III I M"; II: IIII‘ 511':ng I‘:II‘III:IIIIIIIIIII‘I: it I’IIIIII‘I “PM :.¢:‘I":« I fiIII'MIW'“! ],5I <.:_!_'..'/: I I. 2. ‘ _;-'.‘i‘ g '1 I] m]; I: '. 1w], Ig‘gafif II]I]i]I}I]I]]I]IH'I1I;]]I ‘III' 2," IN] ]‘I" Hi] I h H W ],'II]]:2I'] IquI I 2'; 1|];I,2 ‘ - — “c: :— —.-.‘. c ’1- '—':..:T‘: at“ $5.. III “I”! ] 1]» I3], I1 I,I ‘ ~_ M TE #3] ,o]]]" “I I ”ll I" 1“};2? :il ”xv: . rI’ In.) $1 $2! ]_I v". 2. 5"‘2' 'H]| ' ""‘5 fig sIIIIII .I'IIIIII dhkifl :3E. THEdlS llllllllllIllllllUlllllllllllllllllllllllillllllllllllllllll 3 1293 10443 7730 Date 0-7639 This is to certify that the thesis entitled . INTERRELATIONSHIPS OF KNOWLEDGE OF DISEASE, KNOWLEDGE OF TREATMENT, SOCIAL SUPPORT, PERCEIVED IMPACT OF DISEASE AND STATED COMPLIANCE IN A GROUP OF PATIENTS WITH COPD presented by Sharon K. King has been accepted towards fulfillment of the requirements for Master of Science-.dggeemmnsing— Major professor 5/3018?— / I A-A.--—-—— 4 4 .»~... .2 m / l; “' “ “+15% it}. 3 M E “1 »‘ a; as}. fitate "u U fliV‘ sanity *— OVERDUE FINES: 25¢ per day per item RETURNING LIBRARY MATERIALS: Place in book return to remove charge from cirCulatton records 1'! 'i': AUG‘QY me ‘ /4" ”i" ‘i , 'J‘.’K"“ 9-[23-£- . W»? INTERRELATIONSHIPS OF KNOWLEDGE OF DISEASE, KNOWLEDGE OF TREATMENT, SOCIAL SUPPORT, PERCEIVED IMPACT OF DISEASE AND STATED COMPLIANCE IN A GROUP OF PATIENTS WITH COPD By Sharon K. King .A THESIS Submitted to Michigan State University in partial fulfillment of the requirements for the degree of MASTER OF SCIENCE IN NURSING College of Nursing 1982 Copyright by SHARON K. KING 1982 ii ABSTRACT INTERRELATIONSHIPS OF KNOWLEDGE OF DISEASE, KNOWLEDGE OF TREATMENT, SOCIAL SUPPORT, PERCEIVED IMPACT OF DISEASE AND STATED COMPLIANCE IN A GROUP OF PATIENTS WITH COPD By Sharon K. King Chronic obstructive pulmonary disease constitutes a major health problem in the United States. Compliance to a complex therapeutic regimen is of vital importance in slowing progress of the disease and maintaining maximum quality of life for the patient. In this correlational study levels of compliance, social support, knowledge of disease and of treatment and perceived impact of disease were measured in a group of 3l COPD patients. Data were collected four weeks following subject participation in patient education by use of a self- administered questionnaire. Using Pearson Product Moment Correlation coefficients, statistically significant relationships between knowledge of disease and compliance (r = .39, p<:.02) and between perceived impact of disease and social support (r = —.uu, p¢<.007) were determined to exist in the study sample. Additionally, descriptive statistics resulted in the development of a profile of attitudes, beliefs and behaviors common to COPD patients participating in the study. This thesis is dedicated to the COPD patients who willingly and openly shared of their thoughts and fears, with the sincere desire that their efforts may aid in the promotion of increased understanding of patients with chronic lung disease. iii ACKNOWLEDGEMENTS Without the efforts of many people this study could never have been brought to a successful completion. The advice, stimulation and support of my thesis advisement committee is appreciated. Thank you to Barbara Given, Ph. D.,for serving as thesis advisor, and to Nancy Kline, M. N., Donald Melcer, Ph. D., Dorothea Milbrandt, M. S. N., and Brigid Warren, M. S. N., for serving as committee members. The aid, advice and patience of Rob Hymes who acted as a statistical consultant is acknowledged with thanks. The interest, enthuasism, and cooperation of many health care providers in the community made contact with potential subjects possible and is acknowledged with pleasure. The pulmonary staff at Ingham Medical Center and at Lansing General Hospital have all contributed greatly to the very possibility that this research might exist. Most special appreciation is reserved for my family for helping me to learn the meaning of and enjoy the benefits of the truest form of social support. To my parents, LeRoy and Marjorie Hammond, my mother-in-law, Merle King and my wonderful daughters, Nancy, Carol and Amy...thank you for your help and your caring. And for my husband, Darrell, who listened to me, cared about what I was doing and helped every step of the way...Thank You. iv TABLE OF CONTENTS LIST OF TABLES. ............................. . ........ ..... viii LIST OF FIGURES.... .............. . .................... .... ix I. THE PROBLEM Introduction ................ . ..................... 1 Purpose .......................................... 5 Statement of the Question ........................ 5 Hypotheses ....................................... 5 Schematic Representation of Hypotheses ........... 6 Definition of Terms .............................. 7 Limitations of the Study..... .................... 9 Assumptions of the Study ......................... 10 Overview of the Chapters ......................... 11 II. CONCEPTUAL FRAMEWORK Introduction ..................................... 12 ,Pathophysiology of COPD .......................... l2 Clinical Manifestations of COPD .................. 16 Clinical Management of COPD ...................... l7 Compliance ....................................... 19 Knowledge ........................................ 20 Social Support ............... _ .................... 21 Perceived Impact of Disease ...................... 22 Relation to Nursing Theory ....................... 23 Schematic Representation of the Conceptual Model. 26 III. REVIEW OF THE LITERATURE Introduction ..................................... 28 Compliance as a Health Care Problem .............. 28 Measures of Compliance ........................ 3O Predictors of Compliant Behavior .............. 3H Sociodemographic Factors ...................... 35 Knowledge ........................................ 39 Social Support ................................... H3 Perceived Impact of Disease ...................... 51 Conclusion ....................................... 55 IV. METHODOLOGY Overview ...... Sample ........ OOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO Data Collection Sites ........... g ................. Site I ..... Site II.............. ........... .. ............ Site III........................ .............. Data Collection Procedure ........................ Operationalization of Study Variables ............ Knowledge of Disease .......... ‘ ................ Knowledge of Treatment ........................ Compliance. Social Support........... ..................... Perceived Impact of Disease ................... Modifying Variables and Sociodemographic Data. Development of Instrument. ....................... Pretest of Instrument ............................ Reliability and Validity ......................... Hypotheses.... Statistical Analysis of Data ..................... Protection of Summary ....... DATA ANALYSIS Introduction.. Human Rights ....................... Sample Characteristics ........................... Sociodemographic .............................. CliniCal... OOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO Profile of COPD Patient ....................... Reliability of Questionnaire ..................... Knowledge of Disease .......................... Knowledge of Treatment.‘ ....................... Compliance .................................... Social Support ................................ Perceived Impact of Disease ................... Quantification of Study Variables ................ Knowledge of Disease .......................... Knowledge of Treatment ........................ Compliance .................................... Social Support ................................ Perceived Impact of Disease ................... Correlations Between Study Variables ............. Hypothesis Hypothesis Hypothesis Hypothesis Hypothesis Hypothesis Hypothesis I .................................. II.......... ....................... III ................................ IV ................................. vi 57 57 58 58 59 59 6O 63 63 6H 6H 66 67 68 68 69 69 7O 71 72 73 7U 7U 7U 77 81 8” 8H 85 85 86 87 89 89 89 9O 91 91 92 92 93 93 93 99 99 99 Hypothesis VIII ............................... 99 Summary of Correlations .......................... 95 Additional Findings .............................. 95 Findings Concerning Sociodemographic Characteristics ............................... 96 Findings Concerning Conditions of Patient Education.............. ............... 96 Findings Concerning Clinical Status ........... 97 Summary .......................................... 98 VI. SUMMARY AND IMPLICATIONS Overview ......................................... lOO Descriptors of Study Sample ......... . ............. 100 Clinical Characteristics ........................ . 10” Conditions of Patient Education .................. 106 Measures of Variables ............................ 108 Knowledge of Disease and Knowledge of Treatment .................................. 108 Compliance .................................... 110 'Social Support.............., ................. 11m Perceived Impact of Disease ................... 118 Statement of the Research Question ............... 122 Research Hypotheses .............................. l23 Hypothesis I .................................. 123 Hypothesis II ................................. 12H Hypothesis III ................................ 12S Hypothesis IV ................................. 125 Hypothesis V .................................. 126 Hypothesis VI ................................. 127 Hypothesis VII ................................ 127 Hypothesis VIII ............................... 128 Summary of Hypotheses ............ ' ................ 128 Implications for Nursing Practice ................ 129 Implications for Nursing Education ............... 135 Implications for Further Research ................ 138 Summary .......................................... IUO BIBLIOGRAPHY .............................................. lUl APPENDIX A- Hospital Approval of Study Protocol .......... x B- Checklist: Criteria for Study Participants.. xi C- Letter of Explanation and Consent Form ....... xii D- Checklist: Teaching Documentation ........... xiv E- Study Questionnaire .......................... xv F- Raw Frequencies .............................. xxvii vii 10. ll. 12. 13. 19. 15. 16. 17. LIST OF TABLES Age Distribution of Subjects ...................... Number of Living Children ......................... Income Levels of Subjects ......................... Educational Levels of Subjects .................... Duration of COPD in Years ......................... Number of Hospitalizations in past 12 Months ...... Class of Respiratory Impairment by Activities Causing Dyspnea ........................ Class of Respiratory Impairment by Pulmonary Function Test...~ ........................ Correlation Between Social Support Scales ......... Correlation Between Perceived Impact of Disease Scales ............ f ..................... Summary of Reliabilities of Scales ................ Distribution of Knowledge of Disease Scores ....... Distribution of Knowledge of Treatment Scores ..... Percent of Compliance ..... _ ........................ Distribution of Social Support Scores ............. Distribution of Perceived Impact of Disease Scores. Correlations Between Study Variables .............. viii 75 75 76 77 78 78 79 80 86 88 88 89 9O 9O 91 92 95 LIST OF FIGURES Schematic Representation of Hypotheses ............ Schematic Representation of a Forced Expiratory Spirogram .............................. Schematic Representation of the Conceptual Model .................................. Flowchart Depicting Collection of Consent Forms ..................................... Nurse Assessment of Patient and Patients Environment .............................. ix 15 27 61 139 CHAPTER I THE PROBLEM Introduction Chronic obstructive pulmonary disease (COPD) constitutes a health problem which is growing in magnitude and significance at an alarming rate in the United States. COPD has been cited as showing the greatest rate of increase as a cause of death among major disease groups over the last decade, exceeding cancer, heart disease and stroke. In the state of Michigan 20,000 residents are hospitalized each year for the treatment of COPD (American Lung Association of Michigan, 1979). The person who is afflicted with COPD faces a number of years of living an extremely restricted existance and often avoids both physical and emotional exertion to the extent of t l, 1978). The constant virtual self-seclusion (Goldenson physical and emotional limitations encountered by the person with COPD frequently result in psychological alterations and a pattern of depression. COPD cannot be cured and lung damage sustained as a part of the disease cannot be repaired. Research has demonstrated that through conscientious adherence to a regimen including medication, regulated exercise and reduction of modifiable risk factors, the person afflicted with COPD may slow the disease process and increase their exercise tolerance (Petty, 1973). Modifiable risk factors in- clude smoking, exposure to environmental respiratory irritants, exposure to respiratory infection, personal coping patterns and life style. Risk factors which are significant and cannot be altered by the patient are sex, alpha-1 antitrypsin deficiency, family history and aging (American Lung Association, 1977; Hugh-Jones, 1978). Except for periods of extreme difficulty in breathing or respiratory infection, the COPD patient is managed on an out- patient basis. Effective management of the patient with COPD is largely dependent upon the willingness and ability of that person to assume responsibility for carrying out the recommended treat- ment regimen (Cherniack, 1977). The typical treatment regimen for the person with COPD is complex and frequently involves a large number of medications, exercise reconditioning and alteration of behaviors which may have been incorporated into the individuals life style over a number of years. Compliance with the recommended treatment regimen will slow the disease process but will not result in rapid or dramatic improvement in the patient's physical condition. Compliance with medical regimens has been acknowledged as a significant problem in the management of a wide variety of medical conditions (Marston, 1970; Vincent, 1971; Sackett and Haynes, 1976). Based on a review of the literature, Zisook (1980) has estimated that as many as 93 percent of patients do not com- ply with recommended treatment regimens. Several factors combine to make compliance a particular problem for patients with COPD. - Gradual onset of symptoms diminishes the patient's recognition of the severity of the disease, and treatment frequently involves significant behavioral changes. Knowledge has frequently been addressed as a means to increase rates of compliance to medical regimens (Bille, 1977; Teglacozzo, 1970; Hecht, 1970). It is essential that patients possess at least minimal knowledge of their basic treatment regimen in order to modify behavioral patterns to concur with recommended prescriptions. Health care professionals endeavor to increase patient knowledge by presenting information regarding both the disease and its recommended treatment. In the study of compliance, knowledge of disease has been differentiated from knowledge of treatment by only a few research- ers (Teglacozzo, 1970; Caplan, 1976). Teglacozzo (1970) concludes that the role of knowledge of disease remains unclear in relation to compliance. Caplan (1976) reports that hypertensive patients with the most accurate knowledge of their regimens had the lowest blood pressures in a longitudinal study conducted at the University of Michigan. A further finding of Caplan's study was that patients with complex regimen demands were less likely to have accurate knowledge concerning their regimen. Social support theory and research, developed by behavioral scientists, has been adopted by the field of mental health as a basis for patient assessment and intervention (Caplan, 1976). Recent research documents the value of viewing social support as a positive influence on both self-esteem and compliance with treatment regimens in patients with a variety of medical condit- ions (Caplan, 1976; Berkman and Syme, 1979; DeAraujo'_£ El: 1972). Research linking social support with compliance is of recent origin and interacting variables are still ill-defined. A person's perception of the probable severity of the consequences of contracting a disease is cited by Becker (1979) in develOpment of a health belief model for predicting compliance. Persons with COPD already have a disease which places limitations upon their life. A measure of the number of changes in usual activities of daily living and occupational activities may be used to assess the health status of the already ill patient (Gilson t al, 1975; Bergner £3 31, 1976; Pollard {_£ El, 1976). Donabedian and Rosenfeld (1965) have found evidence that patients with severe disabilities are more likely to comply with treatment regimens, while Davis (1968) found patients with severe illness had lower rates of compliance than patients with less serious . illness. Although there is a lack of congruence in the literature concerning the identification of factors affecting compliance and the relationships of social support, knowledge and perceived impact of disease to compliance, the fact that compliance is vital to the success of medical treatment is undisputed. Purpose The purpose of this study is to identify interrelationships between social support, knowledge of disease, knowledge of treat- ment, perceived impact of disease and stated compliance in patients with COPD. Increased understanding of the relationships of these variables to compliance will assist health care profess- ionals to make knowledgeable assessments of a patient's compliance potential and plan appropriate interventions to enhance compliance to treatment regimens. Increased compliance with recommended treatment regimens may result in improved health status and greater independence for the patient with COPD. Statement pf the Question The goal of this study is to measure social support, know- ledge of disease, knowledge of treatment, perceived impact of disease and stated compliance in a group of patients with COPD. The results of these measures will then be analyzed to answer the question: Are there relationships between social support, knowledge of disease, knowledge of treatment, perceived impact of disease and stated compliance in a group of patients with COPD? Hypotheses Hypothesis I: There is a significant relationship between social support and stated compliance with the treatment regimen in the patient with COPD. Hypothesis Hypothesis Hypothesis Hypothesis Hypothesis Hypothesis Hypothesis II: III: VI: VII: VIII: There is a significant relationship between social support and knowledge of the treatment regimen in the patient with COPD. There is a significant relationship between social support and knowledge of disease in the patient with COPD. There is a significant relationship between social support and perceived impact of the disease in the patient with COPD. There is a significant relationship between knowledge of the treatment regimen and stated compliance in the patient with COPD. There is a significant relationship between perceived impact of the disease and stated compliance in the patient with COPD. There is a significant relationship between knowledge of disease and stated compliance with the treatment regimen in the patient with COPD. There is a significant relationship between knowledge of disease and perceived impact of the disease in the patient with COPD. Schematic Representation 2f Hypotheses Schematic representation of hypothesized interrelationships is shown in Figure 1. In this model, factors hypothesized to be related to stated compliance are indicated to be social support, knowledge of disease, knowledge of treatment, and perceived impact of disease. In addition, the model demonstrates hypothesized relationships of social support to knowledge of disease, know- ledge of treatment and perceived impact of disease. A relation- ship between perceived impact of disease and knowledge of disease is indicated by the model in Figure l. Definition‘pfizgpmg The following definitions of terms utilized in the research question will be employed for the purpose of this study. COPD Patient: A patient who is medically diagnosed and under medical treatment for COPD, emphysema or chronic bronchitis. Social Support: The degree to which the COPD patient reports a pattern of consistent communications, assistance and mutual evaluation with other persons and the degree to which the COPD patient reports a belief that he/she is understood, cared for and esteemed in relation to his/her disease by those other persons (Caplan, 1976). Stated Compliance: The extent to which the patient reports that he/she carries out the therapeutic recommendations of health care providers concerning prescribed medications, behaviorial modification (stress management, cigarette smoking, relaxation techniques), exercise, postural drainage, methods of preventing exacerbation, and follow-up care. Patient Knowledge pf Disease: The factual information that the patient is able to recall and report in response to questions concerning COPD, its etiology, symptoms, complicating factors .mwnm:0wumaoanoucw nouwwonuomzn ocu mumUHUCH mmxon :mozuon m30na< .wwmmnuom>z owwwoomm m cu momma cam uxou mzu cw ooconmmmn now now: who gonna zoom :0 mamnossc one .momonuoa>: mo :oHumucomonmoa owumsonom "A oazwwm um¢um_a no Puff. ouzwu mud n: ,lllllljllll / \\ 292.31 .5. ezmzfiug or 85.5.8 325 1v .rzomtaw H 233 a wmtmmoa .50 $9.: 20 3. o Smiths» 3 use as a. and prognosis. Patient Knowledge pf Treatment Regimen: The factual information that the patient is able to recall and report in relation to questions concerning his/her prescribed medication (purpose, side-effects), breathing and coughing techniques, exercise, symptoms of infection, methods of preventing infection, and follow-up care. Perceived Impact pf Disease: The number of changes necessitated by symptoms of COPD which are reported by the patient in relation to social activities and functional ability to perform customary activities of daily living. Limitations pf the Study Limitations of the study include the following: (1) The small number of patients participating in the study due to local availability result in data which are not general- izable to larger populations. (2) The study participants were a convenience sample and random selection of study participants was not employed in obtaining the study population. The variables which were not measured cannot be assumed to be normally distributed and the potential for bias exists. (3) Standardization of patient education does not exist. The information received by the patient from health care providers may vary in respect to content and manner of delivery. (H) Stated compliance is based on the participant's report of individual treatment regimens and compliance to that regimen 10 rather than what was specifically prescribed by the health care provider. (5) This study does not address major variables such as perceived benefits, barriers or susceptibility which are of acknowledged importance but are beyond the scope of this study. (6) Study participants were obtained from three different sites. Differences between those sites, and the possible resultant differences in patients obtained at those sites, may act as a confounding variable. (7) The study participants were relatively homeogenous in relation to severity of disease. Because of the lack of variability of severity the potential for bias exists. Assumptions pf the Study For the purpose of this study the investigator makes the following assumptions: (1) That COPD is a chronic degenerative disease causing symptoms which require changes in living habits and social activities. (2) That measures of knowledge, compliance, social support and perceived impact of disease developed by the investigator are sensitive enough to quantify variations in these variables. (3) That participants in the study have been given information in regard to treatment regimens recommended to them by health care providers. (u) That participants will answer questions related to compliance, social support and perceived impact of disease 11 honestly and that these concepts have meaning to study participants. Overview pf the Chapters Presentation of this research study is organized into six chapters. Included in Chapter I are an introduction, purpose of the study, statement of the question, hypotheses, definition of terms, and a statement of the limitations and assumptions of the study. In Chapter II, the concepts and theories revelent to this study are integrated into a conceptual framework upon which the hypotheses are based. ' A review of the literature presented in Chapter III indicates pertinent background relevant to the research question and those variables which it addresses. Discussion of methodology and procedures are presented in Chapter IV. A description of the population and setting of the study, data collection procedure, instruments, scoring procedures and human rights protection are included in this chapter. The data collected relevant to the research question and general descriptive data are presented in Chapter V. Research findings are summarized and interpreted in Chapter VI. Recommendations and conclusions resultant of the research study are presented in this chapter along with implications for professional practice. CHAPTER II CONCEPTUAL FRAMEWORK Introduction The individual with chronic obstructive pulmonary disease (COPD) possesses a number of symptoms, both physical and emotion- al, which are common to all persons afflicted with the disease. One body of precepts essential to the understanding of the person afflicted with COPD are the pathophysiology, clinical manifest- ations and treatment which are standard for the disease. In this chapter the concepts and theories relevant to this study are integrated into a conceptual framework upon which the hypotheses are based. Pathophysiology pf COPD The word chronic denotes an ever-present and continuing disease entity. COPD is a progressive, irreversible and degen- erative process which includes chronic bronchitis and emphysema after each disease has reached the point at which chronic alveolar distension causes air trapping to occur (MacDonnell and Segal, 1977). The basic pathophysiology common to COPD is characterized by constant hyperinflation of the alveola caused by weakened bronchiolar walls and disrupted alveoli which results in 12 13 decreased efficiency of gas exchange at the alveolar level. Decreased ciliary and mucous blanket function, coupled with de- generative changes in alveola, lessen the area available for gas exchange between the alveolar air and pulmonary blood. Contin- uation of this degradation process results in "wasted" or dead- t al, 1975). space ventilation (Shapiro Uneven distribution of ventilation and the resulting hypo- ventilated areas in relation to pulmonary blood flow cause arterial hypoxemia and an increased cardiac workload. Pulmonary arterial hypoxemia and the resulting vasoconstriction of the pulmonary arteries causes a backpressure which leads to right ventricular overload. This, in time, leads to enlargement of the right ventricle and eventually to cor pulmonale (MacLeod, 1977). In the 1950's COPD was commonly recognized as a disease characterized by the anatomic destruction of the alveola. Studies conducted during this time confirmed this anatomic definition but caused confusion because of their observation that patients presenting clinical symptoms of COPD were sometimes found to exhibit different postmortem abnormalities. Histologic research conducted by Reid at the same time found evidence of hypertrophy of the bronchial mucous glands in patients with chronic bronchitis (Shapiro g; 31, 1975). During the ensuing two decades numerous studies were conducted in an attempt to classify chronic respiratory disease and correlate the patients' subjective complaints, physical symptoms and physiologic measures in with observed histologic abnormalities (Marks, 1973). Throughout the continuing reevaluation of criteria to spec- ify and classify COPD, two common tests have been routinely used to diagnose and measure progress of the disease. These are_ pulmonary function tests and the evaluation of arterial blood gases. Pulmonary function testing is used to evaluate the purely mechanical abilities of the patient with regard to vent- ilation. Forced vital capacity (FVC) is representative of the patients' maximum breathing ability and is determined with a spirometer which allows direct measurement of pulmonary gas volumes. The forced expiratory volume in one second (FEVl) is the measure of the volume of air which the patient is able to forcefully expire in one second. Pulmonary function tests in the COPD patient reveal a decreased forced expiratory volume per second (FEVl) and a reduced ratio of forced expiratory volume to forced vital capacity (FEVl/FVC). As diagnostic tools, forced vital capacity and forced expiratory volume per second are compared to norms which have been derived for persons of a similar age, sex, and body size. A schematic diagram of the forced expiratory spirogram is shown in Figure 2. As the perfusion and distribution of ventilation within the lungs becomes altered from normal, arterial blood gases show a partial pressure of oxygen (PaOZ) which is lower than normal. Further progress of the disease results in generalized hypovent- ilation, causing the decreased PaO to be accompanied by an 2 15 increased partial pressure of carbon dioxide (PaC02)’ eventually resulting in respiratory acidosis and ventilatory failure. Failure of the lungs to clear the blood of carbon dioxide wastes _is an immediate life threatening situation. Volume Time Figure 2: Schematic representation of a forced expiratory Spirogram. The maximum inspiration is depicted by a rapid increase in volume. The total air expelled is the forced vital capacity. The volume expelled in the first second is the forced expiratory volume in one second (FEV ). Adapted from Shapiro, Application pf Blood Gases, 1977. 16 Clinical Manifestations pf 9922 Symptoms of progressively severe dyspnea on exertion are often subtle and insidious, causing the patient to remain unaware of this disability until it becomes quite advanced. It is not uncommon for the COPD patient to exhibit a cough productive of a thick, tenacious Sputum. Physical examination may show pursed lip breathing, distant breath sounds, hyperresonnance and wheezes or rhonchi (MacLeod, 1977). The COPD patient eventually experi- ences hospitalization as a result of severe dyspnea and/or respiratory infection. The disease may progress over a period of months or years before symptoms become debilitating enough to cause the patient to seek medical treatment. The COPD patient is a chronically ill individual with over- whelming physical and emotional symptoms, always hypoxemic, and often a carbon dioxide retainer (Shapiro, 1975). The patient attempts to avoid physical activity that precipitates shortness of breath and this limitation of activity produces lazy muscles which require more oxygen to do less work. The COPD patient's exercise tolerance is diminished, sleep patterns are disturbed, and the patient becomes dependant primarily upon his cardiac reserve to maintain homeostasis. The patient lives in a hostile environment where he is threatened in his ability to perform ordinary activities or daily living. This may lead to a state of depression that becomes overwhelming (Shapiro, 1975). 17 Clinical Management pf COPD Treatment of the patient with COPD is highly individualized and is aimed at achievement of maximum self-reliance for each patient. As summarized by Cherinack and Lenzman (1977) "the major thrust of the management of patients suffering from chronic airflow obstruction is directed at overcoming, insofar as possible, the functional disturbances that are present. The measures are designed to reduce the work of breathing, to prevent acute exacerbations, to improve the performance of daily activities and to lessen the complications of chronic hypoxemia". Although treatment for COPD is primarily pallitative, progress of the disease can be slowed and disabilities lessened with compliance to the treatment program. Statistics reported by Petty (1973) indicate that loss of pulmonary function can be slowed, and exercise tolerance increased in spite of decreasing pulmonary function when COPD patients participate in a compre- hensive care plan involving patient education, pharmacologic therapy and physical reconditioning. The COPD patient is commonly instructed in specific ways of avoiding respiratory infection, such as avoidance of crowds during flu season, the importance of dressing appropriately for the weather and avoidance of contact with persons known to have colds or flu. Bronchodilating medications are customarily prescribed to expand the airways and COPD patients are instructed in the purposes and dosages of these medications. Additionally, patients are cautioned concerning toxic side-effects which accompany over- 18 dosage with bronchodialtors. Patient education for the COPD patient includes teaching the importance of ceasing cigarette smoking and the avoidance of respiratory irritants such as smoky rooms, spray products and areas of high concentration of air pollutents. The importance of adequate hydration is stressed unless contraindicated by accompanying symptoms of congestive heart disease. Breathing retraining is an important part of patient education for the COPD patient. Through the practice of diaphragmatic breathing techniques patients are able to maximize the efficiency and decrease the work of breathing. For patients who are prod- uctive of significant amounts of sputum, instruction in postural drainage and productive coughing offers a way of clearing the airways of secretions. Symptoms which must be promptly reported to the physician by the patient are reviewed as a part of the patient education program for COPD patients. The importance of consistent graded exercise is stressed and efforts are made to aid the patient in planning activities to make the mose efficient use of available energy. Techniques of relaxation and stress reduction are frequently incorporated into patient education programs for persons with COPD. The spectrum of the disease can be as long as twenty to thirty-five years and effective management can improve the patient's quality of life and lead to avoidance of the life of a3 "respiratory cripple" (MacLeod, 1977). Except for periods of 19 acute ventilatory distress or pulmonary infection, COPD patients are managed on an out-patient basis and the responsibility for compliance to the prescribed treatment lies with the patient and his family (Petty t l, 1973). Compliance Compliance with medical regimens on the part of the COPD patient is expected to be reflected in alterations in the behav- ior and life style of the patient for the remainder of that person's lifetime. The disease is not self-limiting and cure cannot he promised or provided. Diagnosis and prescription are normally made during the fifth decade of the patients life, by which time patterns of living have been well established and are changed only with consious and deliberate effort on the part of the patient. Compliance is a vital factor in both controlling the progress of the disease process and in maintaining functional abilities which add to the quality of life for the individual with COPD. A number of factors combine to make compliance a particular problem for patients with COPD. Gradual onset of symptoms diminishes the patients recognition of the severity of the disease, and the treatment program to which the COPD patient is expected to comply is complex and frequently demands major changes in life style for both the individual with COPD and the patients family. Many studies have been done in an effort to determine rates of compliance of various groups of patients to their prescribed 20 medical regimens. Reported compliance rates are often inconsist- ant and misleading with compliance rates of patients with acute, self-limiting illness compared to those of patients with a chronic illness (Marston, 1970). Operational definitions of compliance differ from one study to another and lack of objective measures of compliance provides an obstacle to the interpretation of research results. Nevertheless, it is generally acknowledged that the scope of noncompliant behavior is significant (Marston, 1970). Based on a review of the literature, Zisook (1980) has estimated that as many as 93 percent of patients do not comply with recommended treatment regimens. It has been concluded by researchers that factors beyond pathophysiology and clinical manifestations of the disease are influential in determining the rate of compliance to medical regimens. One of those frequently studied factors which is independent of the disease is knowledge. Knowledge A large number of studies have shown that knowledge alone concerning disease and its treatment does not provide sufficient motivation on the part of the patient to produce compliant behavior (Bille, 1977; Davis, 1963; Vincent, 1971). Tradition- ally nurses have felt it to be important for the COPD patient to become aware of the basic anatomy and physiology of the lung in order to understand both his symptoms and the reasons for various aspects of his care. As necessitated by their treatment regimen, patients have additionally been instructed in the importance of 21 ceasing cigarette smoking, medications to relieve bronchospasm, avoidance of inhaled irritants, insurance of adequate hydration, avoidance of infection, breathing retraining, and exercise reconditioning. The success of therapy is dependent upon the level of cooperation and compliance with the treatment regimen exhibited by the patient and the patients family (Cherniack and Lentzman, 1977). It is paramount in home treatment that the therapeutic regimen be followed as directed by the physician. It has been observed by Litman (197U) that once treatment is prescribed, it is assumed that the patient and family will follow through. According to Moser (1980) education of the patient must be the central objective of all pulmonary rehabilitation programs. Cherniack and Lentzman (1977) also emphasize the vital nature of education of the COPD patient and state additionally that it is essential to continually reinforce all instructions given to patients. Although knowledge alone has not been found to be predictive of compliance it has been concluded by Caplan (1976) that knowledge is one factor which does have an indirect effect upon patient rates of compliance. Psychological factors have also been identified as being important in the outcome of treat- ment efforts for COPD patients (Agle t al, 1973). Social Support It has been acknowledged by behavioral scientists that adaptive processes are facilitated in the presence of a strong social or family support system. Caplan (1970) defines social 22 support systems as consisting of "enduring interpersonal ties to a group of people who can be relied upon to provide emotional sustenance, assistance and resources in times of need, who pro- vide feedback, and who share standards and values". During the past three decades a substantial amount of research has been conducted which indicates that the availability and strength of social support provides a protective psychosocial influence against both physical and psychosocial stressors. Cassell (197”) postulates that social support functions as a protective buffer and that an individual with an absent or dis- organized social support system experiences an increased susceptibility to physical illness. Strong social support net- works have been correlated with low mortality rates in a nine year longitudinal study of residents in Alameda County, Califor- nia (Berkman and Syme, 1979). A number of studies have demon- strated that various indicators of social support are key predictors of patient compliance. Results of research done by Caplan (1976) at the University of Michigan strongly indicate that the answers to questions concerning the factors involved in patient compliance are more complex than current health education practices would suggest. Perceived Impact pf Disease The perceived severity of illness and the number of alter- ations in daily life style have been found to be factors related to the degree of compliance in a number of research studies (Charney, 1967; Becker, 1972; Francis, 1969). The perceptions of 23 an individual with respect to the severity of his illness may differ from the clinical measures of the amount of physical dys- function which is actually present. The behavior of the individ- ual is a manifestation of the overall impact of illness, reflect- ing the effects of both clinical and subjective dimensions, as well as their interactive effects on daily activities. Measure- ment of an individuals behavior will therefore reflect the perceptions of the person in relation to the severity of his illness as well as the actual amount of clinical dysfunction which is present. Relation 52 Nursing Theopy The goal of nursing in working with the patient who has COPD is to assist that person in achieving their maximum health potential. Four primary objectives are employed toward this end: (1) maintenance of the greatest possible function and integrity of the individual; (2) prevention of further limitation; (3) pro- motion of maximum quality of life; and (U) modification of behavior or environment to accomodate limitations and promote maximum function (Redman, 1971). Theorists in the field of nursing subscribe to the concept of holistic man, a being who affects and is affected by his environment (Rogers, 1970). Viewing the patient in this manner requires that the nurse develop a recognition of the importance of assessing both psychosocial and physiological factors as a part of planning and evaluating interventions for the COPD patient. 2” According to Rogers (1970) "positive health measures will be directed toward determining individual differences and assisting people to develop patterns of living coordinate with environ- mental changes rather than in conflict with them". It is imperative to recognize that the patient is an intergal parti- cipant in the intervention process and that the patient functions within the context of his environment. The conceptual framework of nursing developed by Rogers closely parallels general system theory. Fundamental to the understanding of Roger's model are five basic assumptions about human beings. The model utilized for the development of this study is based upon these assumptions and Rogers framework of nursing. The first assumption is that the human being is a unified whole possessing an individual integrity and manifesting characteristics that are more than and different from the sum of the parts (Rogers, 1970). For the purpose of this study both the COPD patient and the nurse are viewed as interacting individuals, capable of both releasing and receiving energy and information from one another. Rogers' second assumption is that there exists a constant and continuous interchange of matter and energy between the individual and the environment. This assumption is character- istic of the definition of an open system developed by Von Bertalanffy (von Bertalanffy, 1968). 25 The third assumption of Rogers framework holds that the life process of human beings evolves irreversibly and unidirectionally. This assumption is particularly relevant when considering the patient with a chronic, irreversible disease such as COPD. Fourth of Rogers assumptions is that there exists a pattern and organization which identifies individuals and identifies their inovative wholeness. It is this assumption which necess- itates the actions of the nurse in assessing characteristics which are unique to each individual with COPD. The human capacity for abstraction and imagery, language and thought, sensation and emotion make up the fifth assumption of Rogers framework and additionally the opportunity for meaning; ful nursing interventions. Using these five assumptions as a base, the life process of human beings becomes a phenomen of wholeness, of continuity, of dynamic and creative change (Rogers, 1970). The life process possesses its own unity and is inseparable from the environment. According to Rogers (1970), the science of nursing is directed toward describing the life process of humanity, and toward explaining and predicting the nature and direction of its development. Increased understanding of the roles played by the patient's perceptions of the impact of their disease, the effects of their social support systems and their level of knowledge are important aspects of enhancing compliance potential. Assessment of the patient's strengths and limitations in areas known to effect 26 compliance will enable the nurse to plan appropriate intervention strategies with the patient. Aiding the patient in integrating a pattern of compliance into their own individual life style whould result in an improved health status and maximum quality of life , for the patient. Schematic Representation pf the Conceptual Model Both the factors common to all patients with COPD (patho- physiology, clinical manifestations and management) and the factors of knowledge, support and perceived impact of the disease which are unique to each individual are shown in Figure 3 to interact and exert an effect on the individuals degree of compliance. The degree of compliance exhibited by the COPD patient is additionally shown to exert an effect upon these factors. The nurse is shown to possess knowledge of those factors common to all COPD patients (pathophysiology, clinical manifest- ations and management), which combined with the knowledge gained by assessment of those factors unique to each individual with COPD (level of knowledge, social support and perceived impact of disease), guide nursing interactions with the patient and assessment of the patients degree of compliance. Both the nurse and the COPD patient are shown to effect and be effected by one another through their interactions. .Honoz Hmsuaoocou mo :0wumucmmomaom owumeosom um onswwm 27 uozsfizoo _ 323.328 Lo hzw2mmmmm< “ mo Ju>m4 a o 232: _ 3: 2.2. _ u... 2 2:323. :2... 9.00 33:32.. _ .o 32:... 2: _ “.2..on _ .o 23.33.... 3 c 92.35. 3.5.3.. _ +_ .0 2353.24 - 222: omoo .0 _ +F L 0:. 2.3 23322323» .coecoocoe _ 2:3... :2... .33... .o _ 3:333: 325.0 _ nee 2.53 :39... 9.3.9.... ‘4 .o coo-.325. 3 30:2. . +_ _ 9.00 o t .L . Ir .339 22...... .lllrr - a c. e , ~ amoo .o v .o .cosuuo:< All a .u .r 2.509236 .23 2.63 39.5.0 23:23:36 A_I .1 .3 J: a - 32:29 23:20:. 1 “we to am oaoo «o .o .0332: _ huuU3M.cw I 2.253: _ 23:33:55 +— .336 .o .3335. 3258 332-2352. _ . 92.23.. 303:. 9.0.0 .o 3 coo-.322 .9 2.22333 .9 con-.325. _ 323.3850..- 1 - Sacha. _ 5 3243.38 522.. 980 z. _ omoo com @2220 car—huh: 2.0.34... ucz<.._azoo 02:59:: #2352. umzaz no suaiomus _ no panammummc neckedm omhomuum . ouoo no :mqiomn... unmaz onoo 1.53 5.25.5?“ CHAPTER III REVIEW OF THE LITERATURE Introduction The research question posed in this study is concerned with the determination of relationships between compliance, knowledge of disease, knowledge of treatment, social support and perceived impact of disease in a group of patients with COPD. The focus of the review of the literature will be an in-depth review of compliance literature, specifically addressing the areas of knowledge, social support and perceived impact of disease. The discussion of compliance will be limited to recent research which is pertinent to compliance in patients who have chronic diseases as opposed to acute illness. Compliance a ‘3 Health Care Problem The definition of compliance most frequently ascribed to by researchers is "the extent to which the patient's behavior (in terms of taking medications, following diets, or executing other life-style changes) coincides with the medical prescription". (Marston, 1970; Sackett and Haynes, 1976; Becker, 1970). Sackett (1976), acknowledging that the word "compliance" carries with it the connotation of a dictatorial attitude on the part of health care providers, encourages continued use of the term to describe 28 29 patient behaviors in relation to health care prescriptions, feeling that the "precision and rigor" implied by the term are highly appropriate for this area of research. Noncompliant patient behaviors have existed since the evolution of one person caring for the health care needs of his fellow man. Hippocrates is reported to have observed that "(the physician) should keep aware of the fact that patients often lie when they state that they have taken certain medicines" (Gordis, 1976). In more recent times noncompliance has been acknowledged as a health care problem and has been studied extensively during the past thirty years. The issue of compliant behavior on the part of patients has intensified as the care of patients in hospitals has become increasingly focused upon acute care. Patients who previously may have been hospitalized and whose care would have been care- fully supervised are now assuming responsibility for their own care in increasing numbers. Noncompliant patient behaviors are a frustration to the health care provider who is attempting to evaluate the efficacy of the treatment regimen that they have recommended to the patient. Because of noncompliant behaviors many patients are receiving less than maximal benefit from the health care they have sought. Matthews (1975) additionally cites noncompliant behavior as functioning as a significant barrier hindering the implementation of many of the important advances made by medical science in the past several decades. 30 A multitude of studies have been done in efforts to ascertain predictors of noncompliant behaviors and to develop a theoretical model for explaining compliance. Several extensive reviews of compliance research studies have been published (Marston, 1970; Mitchell, 197”; Sackett and Haynes, 1976). Several research studies indicate that levels of compliance are effected by the nature of the illness and the treatment. Stone (1979) cites evidence that compliance rates are lower in patients who have a chronic disease than for those with an acute illness, especially in instances where the acute illness is accompanied by overt symptoms. In a study of cardiac patients, Davis and Eichhorn (1963) observed that participants made those changes which required the least adjustment in their lives. Hulka 23 El (1976), in research involving diabetes and congestive heart disease patients, found medication taking errors of less than 15 percent when only one drug was prescribed. The error rate increased to 35 percent for patients who had five or more drugs prescribed as part of their treatment regimen. Measures pf Compliance In the compliance studies which have been conducted in the past a number of different methods have been used to measure the degree of compliant behavior exhibited by patients. The most objective measures of patient compliance used in research studies have been blood tests and drug excretion tests. In an exhaustive review of the literature, Marston (1970) reports that even those 31 criterion as exacting as drug excretion testing or blood tests have presented difficulties in an accurate estimate of patient compliance. Although the techniques for determining patient compliance, drug excretion tests or blood tests, have been the same the operationalized definition of compliance has varied from one study to the next. Marston (1970) reports that some researchers have based their determination of compliant be- havior upon one urine test, collected either at an out-patient clinic or at an unannounced home visit to the patient, while others have used a series of urine tests upon which to base their estimates of patient compliance with drug taking recom- mendations. Gordis (1976) additionally points out that even when a series of physiologic measures are used there is a wide variation in the percentage of negative tests which will be used to differentiate between behavior which is compliant or noncom- pliant, ranging from 50 percent to 100 percent positive urine tests as being indicative of compliance in various studies. Another direct but somewhat less objective method of determining patient compliance has been the use of pill counts for patients who have had medication prescribed as part of their therapeutic regimen. Use of this method has required that researchers be dependent upon the patient to remember to return their supply of medication for the count to take place. As with blood tests or drug excretion tests there has been a wide variation in the percent of deviation from 100 percent of the medication being used which would be interpreted as compliant 32 behavior on the part of the patient. These variations in the manner in which compliance is operationalized have made compar- isons between different studies perplexing if not impossible (Marston, 1970). Other measures of patient compliance which are detailed in Marston's (1970) review of compliance literature include the number of follow-throughs of referrals, the numbers of patients who remain under medical supervision, the direct observation of patients, and self-report on the part of patients. With each of these methods there remains variation in the criterion used to define compliant behavior. Self-report by the patient has been measured both through personal interviews and by the use of written questionnaires. Questionnaires used have employed both open-ended questions, closed-ended questions, or a combination of both types of questions. Some researchers are reported to have utilized a combination of two or more types of measures in an effort to ascertain levels of compliance in groups of patients (Marston, 1970; Gordis, 1976). Gordis (1976) cites eight studies which were designed to utilize both pill counts and interviews to measure patient compliance to medication taking. In analyzing the results of those studies Gordis (1976) concludes that in all studies patients who were compliant tended to overestimate in interviews the degree of their compliance, while noncompliant behaviors were consistantly understated by patients. No study cited by 33 Gordis found compliant patients misrepresenting themselves as noncompliant, nor any evidence that patients who report them- selves as noncompliant were lying. Thus, Gordis concludes, if the objective of the researcher is to identify noncompliers many can be identified by indirect methods such as questionnaire or interview while some will misrepresent themselves as compliers. The fact that practical constraints must play a part in the measurement of patient behaviors is emphasized by both Marston (1970) and Gordis (1976). Many aspects of the therapeutic regimen for the COPD patient, such as exercise, avoidance of inhaled irritants, breathing techniques, and relaxation tech- niques are not compatible with direct physiologic measurement techniques. The time and cost efficiency in measuring directly only one portion of the therapeutic regimen, such as medication taking behaviors, must also play a part in the decision as to the method of measurement to be used in a compliance study. Although there is a loss of precision resulting from combining compliance scores for more than one recommendation (such as smoking, medications, exercise and relaxation) there does emerge a more comprehensive picture of the patients degree of compliance to a multifaceted regimen. Polit and Hungler (1978) cite as important advantages of questionnaires in studies where direct methods of measure are not applicable the following considerations: (1) questionnaires are relatively inexpensive, (2) questionnaires offer the possibility 39 of complete anonymity to the respondent, and (3) the absence of an interviewer assures the study freedom from any interviewer bias. Compliance in the broadest sense is concerned with the ex- tent to which a patient follows the total treatment regimen recommended by health care providers. A number of methods have been devised by researchers for the purpose of measuring patient compliance. More direct methods, such as drug excretion tests, blood tests, or a count of follow-up visits have the limitation of reflecting only a portion of the patients compliance behavior. More subjective methods, such as interviews or questionnaires, are limited in their degree of accuracy but reflect the patients behavior in relation to the total treatment regimen. Predictors pf Compliant Behavior A large number of research studies have been conducted in an effort to understand factors which might function as predictors of compliant behaviors in patients. Early studies concentrated on the gathering of sociodemographic data and an attempt to correlate those data with noncompliant behaviors. Later research became increasingly complex and attempted to gather information regarding social and psychological factors, variations in compliance behavior accompanying various types of illnesses, and factors surrounding the interactions of the patient and the health care provider. 35 Sociodemographic Factors Research studies have been conducted in an attempt to correlate such factors as age, sex, level of education, race, religion and marital status to the level of compliant behavior exhibited by patients. In a study of 29 myocardial infarction patients Bille (1977) found a statistically significant correlation (T = .99, p¢<.03) between age and compliance behavior, such that the older patients attained higher reported compliance with the medical regimen prescribed by their doctors. Bille asked the patient to estimate the extent to which he felt that he had followed each piece of advice in the month since he was discharged from the hospital. Except for age, further demographic variables were not reported by Bille. A study of appointment keeping behaviors of 159 chronically ill Negro patients conducted by Tagiacozzo and Ima (1970) found that sex, age, occupation, income and welfare status did not relate to patients appointment keeping behaviors. Davis and Eichhorn (1963) conducted a longitudinal study of 369 males with cardiovascular impairment. Interviews and medical examinations were used as measures of the patients degree of acceptance of their medical regimen. No relationship was found between level of education and compliance in the study population. Younger (below US years of age) patients were found to continue a pattern of compliance over the four year study period with greater 36 frequency than did patients over the age of 95 years although the difference was not great enough to be statistically significant. Nelson 25.31 (1978) studied patient noncompliance in a group of 192 patients under treatment for hypertension. Com- pliance was measured by a combination of several criteria: self- report of medication taking behavior, appointment keeping, and blood pressure control. Analysis was done using a multivariate log linear technique to control confounding. Demographic variables measured in Nelson's study population included age, sex, race, education and current employment status. Of these demographic factors, age was found to be significantly related (d = 26 percent) with self-reported medication taking, with patients 50 years of age or older being significantly more likely to report compliance in drug taking than those patients younger than 50 years or age. Patients reporting less than a high school education experienced significantly higher (d 21 percent) levels of blood pressure control than did high school graduates. With regard to appointment keeping, Nelson found a significant positive correlation with patients age 50 or above (d = 33 percent) and with patients who were currently employed (d = 18 percent). It was a part of the conclusion of Nelson's study that the health care provider should anticipate a higher risk of noncompliance among younger patients. In a study of glaucoma patients and their use of prescribed eye drops, Vincent (1971) reports that married women exhibited a 37 lesser degree of compliance than did widows, and that women aged U5 to 6” were more compliant than men. Additionally, Vincent found that patients of the Catholic faith 59 percent were com- pliant with the prescribed use of eye drops while only 38 percent of those patients who were protestant reported compliance.- In relation to the level of education of patients, 50 percent of those patients who had less than eighth grade education were compliant, 32 percent of those patients who had completed eighth through eleventh grades were compliant, and 92 percent of the patients who had completed twelfth grade or more reported that they had used the eye drops as prescribed. Fifty-seven percent of the caucasian patients who participated in Vincent's study reported compliance while 33 percent of the non-white subjects reported that they had followed the medical recommendations in the use of eye drops. Only race and religion were found to be statistically significant at the .05 level in Vincent's study of demographic factors and compliance. Haynes and Sackett’s (197”) review of 190 research studies dealing with demographic features of the patient and compliance found that 191 (73 percent) concluded that there was no relationship between compliance and demographic variables, while H9 studies (26 percent) reported some relationships. Haynes (1976) suggests that the effect of demographic factors might appear to be much greater upon access to health services than upon compliance. 38 Diers (1979) emphasizes the importance of a complete and precise description of the sample in relation-searching studies. Borg and Gall (1979) additionally cite the importance of an adequate description of the sample used in research studies and . state that "one of the major pitfalls of correlational studies is inadequate description of sample characteristics". Fagerhaugh (1963) interviewed 22 emphysema patients in an effort to learn the effect of their disease upon daily living patterns. Only sex of the patient was reported as a descriptor of the group of patients interviewed. In the evaluation of an in-hospital program for the rehabilitation of COPD patients, Kimbel (1971) used sex, average age and severity of disease as descriptors of two sample groups of U6 and 61 patients. Brown S£.El (1981) compared measures of life satisfaction for a group of 32 patients with COPD and 51 patients with coronary artery disease. Demographic data was not reported for either group of patients. Black and Mitchell (1977) used written tests to evaluate a patient education program for 65 patients with COPD. The sample used by Black and Mitchell was described according to age, sex, level of education and occupation. No published studies of levels of compliance were found for any group of patients with COPD. Although some researchers have described sample groups of COPD patients according to demographic characteristics (Burrows and Earle, 1969; Kass t al, 1975; Black and Mitchell, 1977; Perry, 1981), others have reported so 39 little demographic data that it is not possible to describe the study sample in relation to the general population of COPD patients (Brown _3 El, 1981; Agle and Baum, 1977; Fagerhaugh, 1963). The review of compliance literature published by Sackett and Haynes (1970) emphasizes that demographic characteristics of patients are unreliable predictors of compliance behavior. Nevertheless, instructional texts in research design stress the importance of a complete description of sociodemographic characteristics of participants in research studies. Although demographic factors are of controversial value as predictors of compliance behavior their value as descriptors of sample characteristics is undisputed. Knowledge The role of knowledge in relation to patient levels of compliance behavior has been studied extensively and there has been a lack of concordance in the results reported by these studies. Sackett and Haynes (1976) report reviewing six studies which concluded a positive relation between patients knowledge and compliance and an additional eight studies showing no such relationship. In an extensive review of compliance literature Marston (1970) cites two studies which have reported a positive association between compliance and knowledge and five studies which showed no relationship to exist. Marston concludes that knowledge alone concerning illness and its treatment has not no been shown to have an unqualified association with compliance behaviors. Caplan g; 31 (1976) in a longitudinal study of hypertensive patients at the University of Michigan (n = 200) noted that the patients who had the highest knowledge levels regarding their treatment regimens also had the lowest blood pressures. Additionally, Caplan reported that knowledge of the treatment regimen seemed to be more important than knowledge regarding the nature of hypertension in relation to blood pressure control and compliance to the therapeutic regimen. Given 23 El (1978) studied the effect of patients knowledge of their medications on levels of compliance with medication taking in a group of 88 hypertensive patients. Results of Given's study showed patient's knowledge of their medications was positively related to their level of compliance in drug taking (p<:05) both at the beginning and end of the five month study period. Tagiacozzo and Ima (1970) studied compliance in appointment keeping behaviors in 159 Negro patients with hypertension and/or diabetes. A test to ascertain knowledge levels of four common chronic diseases was given to each participant upon the first encounter. All patients were given the same test, regardless of diagnosis, and records were subsequently surveyed to determine the extent of compliance in clinic attendance behaviors. After four clinic visits a statistically significant (x2 = 13.08, df = l, p<.001) relationship between knowledge and appointment 91 keeping was observed, with those patients possessing low know- ledge less likely to continue keeping clinic appointments than those patients with higher levels of knowledge. The correlation between knowledge and compliance was modified by a patients past experience with illness, level of anxiety, and perceptions as to the degree to which the illness they possessed interferred with their daily life. In a study of 29 myocardial infarction patients Bille (1977) found no statistically significant correlation between the patients levels of knowledge and compliance. McKenney _£ _1 (1973) studied the effect of clinical pharmacy services on patients with essential hypertension. Results of the experi- mental services provided to 25 patients were a significant increase in the patients knowledge of hypertension (p<.001), accompanied by a significant increase in compliance levels and blood pressure control (p<.001). Sackett'gt'gl (1975) conducted a randomized controlled trial to increase compliance with antihypertensive regimens in a group of 230 men. The experimental group which received intens- iveinstruction showed an increase in knowledge of hypertension but showed no greater increases in compliance rates than the control group. Tirrell and Hart (1980) studied health knowledge and exercise compliance following coronary bypass in semi-structured home interviews with 32 post surgical patients. Knowledge of the disease process was not measured in this study and although no H2 statistics are reported, the authors cite deficits in the patients knowledge of their regimens. The authors state that "relation- ships between knowledge of regimen and compliance with that regimen are not at a level that would allow for reliable clinical prediction. However, the findings did indicate that knowledge seemed to be acting as an enabling factor in compliance". Vincent (1971) reported on research conducted with a group of 62 outpatients who had glaucoma and factors relating to their level of compliance in using eye drops as prescribed. Vincent found that being aware of the fact that glaucoma can cause blindness and that the eye drops can prevent this blindness did not discriminate between compliers and noncompliers. Written tests were used by Black and Mitchell (1977) to determine knowledge levels of COPD patients (n = 30) in the evaluation of a patient education program. This study did not attempt to relate knowledge levels to the compliance rates of patients. No compliance studies involving knowledge of patients with COPD were located in the literature. Haynes (1976) concludes in a review of compliance literature that "while it is obvious that a patient who does not know the therapeutic instructions cannot comply, it is becomming equally clear that the proportion of patients who fail to comply because they lack knowledge is small indeed". In a more recent overview of compliance literature Kirscht and Rosenstock (1979) include knowledge regarding recommendations and their purpose as one of those factors most associated with high levels of compliance. 93 Social Support Social support has been widely acknowledged as a factor in the health and well-being of patients. Haynes and Sackett (1979) reviewed 22 research articles in shich support relevant variables were measured in relation to patient levels of compliance. One study was reported which gave evidence contrary to the hypothesis that social support is positively associated with compliance, six studies found no association and 15 reported positive relationships. Norbeck (1981) cites a lack of conceptual agreement among researchers regarding both the definition of social support and the manner in which it functions in relation to health and illness. The multidimensional nature of social support is endorsed by all of the researchers who have utilized social support as a study variable. Cobb (1976) defined social support as information that leads persons to believe that they are loved, esteemed and that they belong to a network of communication and mutual obligation. Caplan (1976, 1979) utilizes Cobb's definition but further deliniates support into that which is tangible and that which is intangible (emotional). Tangible support is described by Caplan as behavior which provides a person with goods which have mass or energy (objective) or the persons perceptions and report of such behavior (subject— ive). Intangible or emotional support is behavior which is directed toward providing the person with cognitions (values, uu attitudes, beliefs, perceptions) and towards inducing affective states that are hypothesized to promote well-being (objective) or a persons perceptions of such behaviors (subjective). In one early longitudinal study, Davis and Eichhorn (1963) studied compliance rates of cardiac patients as they persisted over a four year time span. In this study group (n = 369) 52 percent reported being highly influenced by family and friends. Fifty percent of those patients who reported being highly influenced by friends and relatives continued compliant behavior over the four years as compared to 39 percent of those patients who reported that they were only slightly influenced by family and friends. In another early study New E; El (1968) conducted research on the support structure of a group of U8 heart and stroke patients following their hospital discharge. Self—evaluation by patients of their capabilities in eleven activities of daily living according to the scale developed by Katz were compared to evaluations by significant others of the patients level of function. In these interviews New found 95.7 percent agreement between the patients and significant others concerning the dependency status of the patient. Central to the premise of New's research was the belief that agreement between patient and significant other was indicative of support being available to the patient, in that the supportive person held beliefs in keeping with the patient in regard to their physical capabilities. Patients levels of compliance to therapeutic regimens were not 95 measured in New's research. The effect of pharmacy services on a group of 50 patients with hypertension was studied by McKenney g; 31 (1973). Patients were randomly selected for a control group (n = 25) or a study group (n = 25) where each subject was seen once monthly by a pharmacist for a period of five months. The pharmacist evaluated problems reported by patients, therapeutic responses to medicinal and diet prescriptions, and served as an additional support person for the patient. Patients in the control group received their customary care without seeing the pharmacist. Compliance was analyzed using a two-way contingency table and chi square analysis. Compliance rates in the study group were significantly greater (x2 = 1U.U87,_p<.001) than for subjects in the control group. The effect of social support in preventing joint swelling precipitated by job loss in patients suffering from arthritis was the focus of research conducted by Cobb (1976). He found that four percent of the men who received such support had two or more swollen joints, in contrast to 91 percent of the men receiving little support. Compliance to the therapeutic regimen was not measured in Cobb's study. Haynes pg 31 (1976) reported on a group of 38 Canadian steelworkers who were hypertensive and were neither compliant with their medication regimens nor at goal blood pressure six months after starting treatment. Lay support in the form of encouragement and reinforcement were provided every two weeks to H6 subjects in the study group whose average compliance had risen by 21.3 percent over a six month period while average compliance in the control group fell by 1.5 percent. Nelson pp 31 (1978) studied a group of 192 patients under treatment for hypertension to determine levels of compliance. Interviews with patients included five items concerning the subjects rating of the frequency that family members reminded them to take prescribed medications and how much they assisted the patient in following the treatment plan. Multivariate analysis of data did not indicate a correlation between social support as measured by these five items and the subjects level of compliance. Research on patient compliance with antihypertensive medication was conducted by Hershey §£ El (1980). Hershey used a questionnaire to measure components of the Health Belief Model and interviews to determine patients compliance with medication taking prescriptions. A random sample of 132 patients from existing hypertension programs revealed no significant relation- ship between compliance and support given the patient by their family. Support given by the family was measured by one item on the questionnaire which was administered. Caplan 35 El (1976) reported on a pilot study with the goal of examining relationships between patient perceptions of the nature of the regimen, the health care environment, other environments of the patient, self-perceptions of competence, psychological well-being, and indicators of compliance. I47 Primary among Caplan's measures of the patients environment was concern with measures of social support. Social support of the spouse was measured by two items on the questionnaire, three questions addressed the number of friends and social visits reported by the patient, and four questions were included to determine the frequency of supportive behaviors directed toward the patient. Findings indicated that social support from the Spouse was associated with low levels of depression (Y = -.33, 'p<.05). Social support from the spouse and physician tended to be highest for patients who were highly motivated toward compliance. Experimental research designed to test the theory that emotional support should operate to increase compliance was reported on by Caplan 23.31 (1979). A sample of U83 hypertensive patients were randomly assigned to a control group, a social support group and a partner group. In the social support group especially prepared nurses met with the patient, explained the regimen and how to follow it, provided encouragement by praising compliant behavior, provided the patient the opportunity to express anxiety or concern. In the partner group a partner selected by the patient met with the nurse who explained the patients regimen, benefits to the patient and family of the patients compliance, ways of helping the patient achieve compliance, and the need to provide encouragement and reas- surance to the patient. A positive correlation was found between social support from the nurse in the social support experimental 98 group and self-reported compliance (T = .30,_p<.05). Caplan gt‘gl (1979) reported that compliance appeared to determine support as well as be determined by it. Knowledge of regimen, compliance, regimen difficulty, blood pressure, social support, somatic complaints, depression and motivation to comply were additionally measured by Caplan._£‘_l (1979). Motivation to comply was measured by an index composed of regimen difficulty, self-competence, belief that compliance is worthwhile, perceived seriousness of noncompliance, belief that hypertension is present and belief that the blood pressure is elevated. Strong correlations between compliance and social support were not reported but in the conclusion of the report of research Caplan stated that "compliance was highest when both social support and motivation were present". Retrospective interview data obtained from 31” patients was used by Davidson (1981) to study social support and post burn adjustment. Using social support and network measures advanced by Cobb, Davidson found social support to be related to self- esteem (T = .90; p<.01), life satisfaction (‘1‘ = .37; p<.01), and social and recreational activities (T = .1”; p<.01). Compliance was not a variable which was measured in this study. Brown g£ El (1981) conducted research aimed at explaining differences in life satisfaction of persons with different chronic diseases. Through stepwise multiple regression, an assessment was made of the effects of social activity, perceived health, health locus of control and degree of disability on the 99 life satisfaction of patients with coronary artery disease (n = 51) and patients with COPD (n = 32). Social activity emerged as the single best predictor of life satisfaction both for patients with coronary artery disease (Y = .31; p<.05) and for patients with COPD (r = .57; p<.05). Compliance was not addressed in this research. In a longitudinal study of 932 hypertensive patients Glanz g; 31 (1981) used social support as one of four educational interventions aimed at producing change in compliance behavior. Compliance, as measured by patients self-report when interviewed, was reported by 36.9 percent of patients as having been positively effected by the social support intervention which involved a meeting with the patient, nurse and a social support person during which the social support person was instructed by the nurse in specific aspects of the patients regimen and their assistance was solicitated in aiding the patient in carrying out the regimen. Interviews conducted by Barstow (1979) with a sample of emphysema patients resulted in the reported finding that the "single most important influence of adjustment was the presence of a supportive significant other in the home". Barstow did not report on measures used in gathering information from patients nor are study statistics reported. No measure of compliance behavior is reported in Barstow's study. Avery ££.El (1972), as reported by Matthews and Hingson, examined the use of social support techniques with asthmatic 50 patients. Comparing asthmatic patients placed in discussion groups focusing on the ways the patients could prevent asthma attacks with controls drawn from the same emergency room population they found that subsequent visits to the emergency. room by patients in the discussion groups during the next four months were but half the number made by controls. DeAraujo pt 21 (1979) studied the average daily steriod doses needed to stabalize severe asthmatic patients (n = 36) in relation to stress and social support. Psychological assets of patients were measured using the Berle Index. Patients with little stress and much support needed 5 mg/day and those with little stress and little support needed 6.7 mg/day. Patients with much stress and much support needed 5.6 mg/day and those with much stress and little support needed 19.6 mg/day. A strong negative correlation (r = -.56ll; p<.001) was observed between psychological assets and steroid dosage. No studies relating social support and compliance in groups of patients with COPD were located in the literature. Several studies designed to relate social support and compliance in other chronic disease populations were noted to include only from one to seven questions as a measure for social support. Other studies did not detail their measures of social support. Weissman 25.31 (1981) reviewed twelve scales developed since 1975 for the assessment of social support. Of these dozen recent assessment tools, eleven were designed specifically to diagnose or evaluate psychiatric populations while one was 51 developed to measure the impact of illness on significant others. Although assessment of social support has not been described or measured in a consistent manner, more studies have reported positive correlations between social support and compliance (Davis and Eichhorn, 1963; McKenney §£.Ela 1973; Haynes, 1976; Caplan t al, 1976, 1979; Glanz t 31, 1981) than studies reporting no correlation (Nelson _£ 31, 1978; Hershey _£‘gl, 1980). Perceived Imppct pf Disease Perceived impact of disease is a measure of the number of changes in usual activities of daily living which the patient attributes to the disease and its symptoms. The perceptions of an individual with respect to the severity of their illness may differ from the clinical measures of the amount of physical dysfunction which is actually present. The behavior of the individual is viewed as a manifestation of the overall impact of illness, reflecting the effects of both clinican and subject- ive dimensions, as well as their interactive effects, on daily activities. German (1981) in a review of measures of functional dis— ability cites three specific areas which have been addressed in the existing measures of functional disability. First, measurement of the ability to perform activities of daily living such as Katz's Index of Activities of Daily Living (Katz and Akpom, 1979) which measures capabilities in batheing, dressing, toileting, transfer, continence, and feeding. Secondly is the 52 measurement of the degree of mobility of an individual such as the Mobility Scale (Densen and Jones, 1976) which assesses five levels of mobility from the ability to go outside without help to confinement to bed. The third area involves assessment of the mental state of individuals, such as the Mini-Mental State measure developed at Johns Hopkins by Folstein pg 31 (1975) which rates orientation to time and place. Bergner 2; El (1981) report on a Sickness Impact Profile which has been the subject of their research for a period of six years. The Sickness Impact Profile was designed to be a measure of perceived health status, which would be broadly applicable across types and severities of illnesses and across demographic and cultural subgroups. The final revision of the Sickness Impact Profile resulted in 136 questions designed to measure three seperete dimensions of the patients perceptions about their illness. (1) Dimension I: including physical categories such as ambulation, mobility, body care and movement. (2) Dimension II: including psychosocial categories such as social interaction, alertness behavior, emotional behavior and communication. (3) Dimension III: including independent categories such as sleep and rest, eating, work, home management and recreation. In a field test of the final revision of the Sickness Impact Profile utilizing a stratified random sample of 696 individuals Bergner pp 21 (1981) report two reliability measures. Test- retest reliability,yielded an r = .97 and internal consistency 53 analysis resulted in an r = .99. Validity measures included correlating self-assessment by patients with the results of the Sickness Impact Profile (r = .56) and correlating results of the National Health Interview with the Sickness Impact Profile (r = .52). According to the final report of the revision of the Sickness Impact Profile the instrument is currently being experimentally utilized as an outcome measure in clinical trials of therapy for a group of COPD patients. LaRue g; 91 (1979) conducted research to study the relation- ships of physicians ratings of health with self ratings in a sample of 69 aged individuals (mean age 89.25). Self-reports of health of the participants were significantly correlated with the ratings of the physicians which were based on physical examinations of the study participants (0 = .909, x2(l) = 10.69, .pzu Homeconw>cm m.u:oHumm new ucmwumm mo acoEmmmmm< ownsz .Pz Zzomszm mkzmzkn. oz< hzu Can. no ,@z_oz: .o 5.39.»... .0 09.0.0 .. coco:ano. Co 02000 i PPS—b ...<¢O_> If Yes, who: . No (relationship to patient) - Did a friend attend patient teaching? Yes No Material covered during patient teaching: Please check those items covered with the patient during discharge teaching Medications: Name(a): Dosages: Purpose(s): Side-effects: Symptoms to report to doctor: Increase in shortness of breath Increase in sputum production Change in color of sputum Change in thickness of sputum Temperature over 101 degrees Mental confus ion ways of avoiding infection Importance of avoiding inhaled irritants Importance of not smoking Postural drainage Diaphragmatic breathing xiv APPENDIX E STUDY QUESTIONNAIRE Dear Thank you for agreeing to fill out this questionnaire about your experiences with chronic lung disease. The questionnaire is divided into five sections. The first two sections are about chronic lung disease and how it is treated. Following that are questions about your current 'health practices and about the kind of help you receive from other peOple. The last section is general information about yourself. - The questionnaire you fill out will be kept completely confidential and anonymous. No other person will see the questionnaire and your name will not be used in any reports of the study results. . If you would like to receive a Summary of the results "of the study, please fill out and mail the enclosed stamped post card. When you are ready to fill out the questionnaire please try to find a time when you can be alone and uninterrupted. It should take about one-half hour to complete the questionnaire. Try to answer every question. If you aren't sure of the correct answer mark the response with your best guess. Each .response you mark is very important whether it is correct or not. .1 If.you have questions or feel confused by the questionnaire please feel free to call me at 351-79l8. If you have special comments about any of the questions please write a note at the end of the questionnaire. Thank you for your assistance. Sincerely, \jgé2esz/€Z€?, ' Sharon King, RN XV THE FOLLOWING QUESTIONS ARE ABOUT CHRONIC LUNG DISEASES SUCH AS CHRONIC BRONCHITIS, EMPHYSEMA AND CHRONIC OBSTRUCTIVE PULMONARY DISEASE (COPD). PLEASE CHECK THE ONE CORRECT OR BEST ANSWER FOR EACH QUESTION. IF YOU ARE UNSURE ABOUT THE CORRECT OR BEST.ANSWER, ANSWER WITH YOUR BEST GUESS. PLEASE CHECK ONLY.QN§ ANSWER FOR EACH QUESTION. Chronic bronchitis, emphysema and COPD are diseases that: a) can be cured in a short time with medicine. b) cannot be cured but can be helped by medicine. c) can be cured by surgery. A common symptom of chronic lung disease is: _a) chest pain. :b) blood in the sputum. _c) shortness of breath. One important cause of chronic lung diseases such as chronic bronchitis, emphysema and COPD is: a) smoking cigarettes. b) lack of vigorous exercise. c) an accident which injures the lungs. It is not unusual for peOple with chronic lung disease to: a) have frequent headaches which become worse with exercise- b) gain a lot of weight as they decrease their 'exercise. have a hacking cough which has been present for many years. ___°) Chronic lung diseases such as chronic bronchitis, emphysema and COPD cause people who have them to: a) have difficulty moving air in and out of their lungs. b) become allergic to many things which did not used to bother them. c) undergo a change in the size and shape of their lungs. Chronic lung diseases such as chronic bronchitis, emphysema and COPD are made worse by: a) straining the lungs with vigorous exercise such as jogging or swimming. b) continued exposure to irritants such as tobacco smoke and air pollution. c) living in an area where the weather is often damp or cold. Mucus in the lungs becomes a problem for people who have a chronic lung disease because: a) it becomes trapped in the lungs and reduces the airflow. b) it increases their chances of developing blood clots and strokes. it eats away at the delicate tissue of the lungs. ___c) xvi 8. The person who is most likely to develop a chronic lung disease such as chronic bronchitis. emphysema or COPD has: . a) a history of many other diseases which run in their family. b) a history of heavy smoking for a period of ten to twenty years. c) a history of overweight and lack of exercise for a period of ten to twenty years. 9. One important function of the lungs is to: a) get oxygen to the blood so that it can be carried to the cells. b) filter the air breathed in so that impurities don't . get to the blood. c) provide a cushion within the chest to give protection to the heart. 10. One reason that people don't quickly realize that they have a chronic lung disease such as chronic bronchitis, emphysema or COPD is: a) it is not possible for doctors to diagnose chronic lung diseases until a person gets a lung infection. b) chronic lung diseases occur most frequently in people from 90 to 60 years of age and it is normal for a person to be more short of breath as they get older. c) changes in breathing capacity happen so slowly that they are not noticed. THE FOLLOWING QUESTIONS ARE ABOUT THE WAYS IN WHICH PEOPLE WITH CHRONIC LUNG DISEASES SUCH AS CHRONIC BRONCHITIS, EMPHYSEMA AND CHRONIC OBSTRUCTIVE PULMONARY DISEASE (COPD) ARE TREATED AND ADVISED TO TAKE CARE OF THEMSELVES. PLEASE CHECK THE ONE CORRECT OR BEST’ANSWER FOR EACH QUESTION. IF”YOU ARE UNSURE ABOUT THE CORRECT OR BEST ANSWER, ANSWER WITH YOUR BEST GUESS. PLEASE CHECK ONLY‘QNE ANSWER FOR EACH QUESTION. 1. If a person with a chronic lung disease catches a cold they should contact their doctor: a) as soon as they feel a cold starting. b) if they have a fever. c) if someone else at home catches cold too. 2. When a person has a-chronic lung disease it is important for them to: a) keep active so that their muscles do not become weak. b) avoid activity so that it is easier to breathe. continue exercise when it is hard to breathe so that their lungs will have to expand. _..__c) 3. To avoid catching cold a person who has a chronic lung disease should: a) stay indoors during cold weather. b) keep their home heat set at 75 or above. c) dress appropriately for the weather when going outdoors. xvii 10. Broncho-dilators (such as Theolair, Bricanyl) are used in the treatment of chronic lung disease in order to: a) expand the airways. b) loosen secretions in the lungs. c) prevent infection. The most important thing for a person with a chronic lung disease to do when short of breath is: a) lie down on a firm bed or a recliner chair. b) relax and breathe out (exhale) slowly. c) breathe faster to increase oxygen supply to the lungs. Side effects of broncho-dilators (such as Theolair, Bricanyl) which should be reported to the doctor include: a) upset stomach, jitteriness and rapid heartbeat. b) headache, excessive sweating and fatigue (tiredness). c) skin rash, swollen glands and sore throat. Inhaling (breathing in) through the nose rather than the mouth results in: a) less chance of getting an infection. b) increasing the percentage of oxygen which gets to the lungs. . c) warming and moisturizing the air before it gets to the lungs. ' When a person has a chronic lung disease coughing: a) helps move phlegm (sputum) out of the lungs. b) causes the spread of infection within the lungs. c) dries up the normal moisture in the lungs. The most effective breathing pattern for a person who has a chronic lung disease is: a) inhale (breathe in) and exhale (breathe out) through the mouth, taking quick shallow breaths. b) inhale (breathe in) through the nose, exhale (breathe out) through puckered lips, breathing slowly. inhale (breathe in) and exhale (breathe out) through the nose, taking breaths as deeply as possible. ___C) A person with chronic lung disease should be aware that if they develop an infection they may experience the following symptoms: a) chest pain, extreme fatigue (tiredness), headache with blurred vision and dizziness. b) nausea, vomiting, diarrhea, aching muscles and a feeling of extreme weakness. c) fever, change in color or thickness of phlegm (sputum), increased shortness of breath and coughing. xviii FOLLOWING ACTIVITIES. THE FOLLOWING QUESTIONS ARE ABOUT YOU AND THE WAY YOU TAKE CARE .Q£.¥DHRSELE IN RELATION TO YOUR CHRONIC LUNG DISEASE. THE BOX WHICH MOST CLOSELY DESCRIBES HOW OFTEN YOU DO EACH OF THE THERE ARE NO RIGHT OR WRONG ANSWERS. PLEASE CHECK amass, YOUR-ANSWERS ARE CONFIDENTIAL AND :z :z a. a. :51“ . 2;: ,2 .52 >. an 64 91 £5 < 2.3.1 ' 51.1 s 22 a" as“ a d go 05 ACE z 1. I take care to av01d very dry air...aaaaaaaaaeaeaaeaeaeeeeaeaaeaaea 2. I smoke cigarettes....-.................. 3. I contact my doctor if my phlegm (sputum) is a different color or is thicker than usualoOOOOOOOO..OOOOOOOOOOO00.000.000.00. 9. I wait a few 639. before calling my I S: I pracfice reIaxea BreatHIng (dia- doctor if I think I am having side effects from my medicine ................. phragmetic breathing) when short of breathOOOOOOOOOOOC......COOOOOCOOOOOOOOOO 6. I take extra doses of a broncho-dilator (such as Theolair, Bricanyl) when I have trouble bmathinglOO. ..... 00.00.000.00... 7. I plan activities which reduce stress for me (such as walking or gardening)........ 8. I avoid contact with spray products such as hair spray or spray deoderant......... 9. I become very anxious when I am short of bmath......OOOOOOOOOOOOOOOOO0.0.0.000... 10. I forget to schedule checkups with my doctor.0.00.000.000.000...00.00.000.00... 11. I plan my activities so that I can make the best use of the energy I have........ 12. I try not to let my family or friends know when a situation or activity is causing me stress............. ...... ..... l3.- I contact my doctor when I have more shortness of breath than usual........... l9. I spend time with family and friends even when they have a cold or the flu.... 15. I avoid extremes of heat and cold ..... ... xix z 2 gag as gas 3 a?“ f: .3: a i 2%? a; 95% E 16. I wait a few days before contacting my doctor if I develop a fever.......... 17. I do tilting exercises (postural drainage) ...... .......... ........... .... 18. I do not do any special planning for my diet ................. ........... ..... 19. I keep as active as my physical conditfln allows ......... ................... ...... 20. I don't always dress appropriately for the weather when I go outdoors...... 21. During the flu season I avoid crowded places ...... ......... ............... .... 22. I push myself to keep activeeven when an activity causes me to become short of breath...................... ..... .... 23. I make no special time to do things which are relaxing for me....... ........ 29. I stay in rooms where people are smoking ....... . ................ .......... 25. I do not take the medicine prescribed formwwdoctorOOCOOOOOOOOOOOOOO...O THE FOLLOWING QUESTIONS ARE ABOUT THE KIND OF SUPPORT AND ASSISTANCE THAT YOU RECEIVE FROM FRIENDS AND FAMILY IN RELATION TO YOUR CHRONIC LUNG DISEASE. READ THE STATEMENT CAREFULLY AND DECIDE HOW YOU FEEL ABOUT IT.’ YOU WILL AGREE WITH SOME STATEMENTS AND DISAGREE WITH OTHERS. TO HELP YOU EXPRESS YOUR OPINION, FOUR POSSIBLE ANSWERS HAVE BEEN PLACED BESIDE EACH STATEMENT. CHOOSE THE ANSWER MOST LIKE YOUR OWN OPINION AND CHECK THAT BOX. an x“! E 32s: 293 “I CD 20 OS.“ "‘ .7; 83‘. Eu: 3 H Eda-1 03¢ ¢ 9 (I): 1. My family cares about me and what happens to me as a result of my lung disease.................. 2. I have a friend or friends who would look after my home if I was sick and had to be in the hospital 00000000000 .000.......OOOOOOOOOOOOOOOO. XX STRONGLY AGREE AGREE DISAGREE STRONGLY DISAGREE I do not know enough people with whom I feel free to talk about the problems I have due to my lung disease.-...-.-.-............... I have someone I can count on who will help me out if I am sick (for example, drive me to the dOCtOI‘, do w 8h09p1flg)......... aaaaa aaaaaaa‘oeaeae I sometimes feel that my relatives or friends pay no attention to me when I talk about the problems I have due to my lung disease ...... .... ...... My family will take over my household responsibilities when or if’I am sick and cannot manage myself............ ............. ..... I sometimes feel that my friends or relatives are not understanding1when I am upset or irratible due to my lung disease.-.-..-......................... If I feel like I need to talk to someone about my lung disease I know I can always find someone who cares and will listen to me.... ................ .... I sometimes feel that my family doesn't show enough concern about the problems that I have due to my lung disease ................ . ...... . ......... ' 10. My family and/or friends are understanding of the limitations I experience as a result of my lung disease,- (for example, they understand if I don't have enough energy to do things they would like to do)..... 11. My family expects me to carry out my usual activities when I feel sick...-......-................ 12. My friends don't understand the problems that I have in my life due to my lung disease ......... . ...... 13. My family does all they can to encourage me when I feel sad or blue due to my lung disease ....... . ..... 19. I could use more help with managing my usual responSibilities ...... ...... ....... O ..... ......OOOOOOO 15. My family or friends can be counted on to help me get the medical care I need (for example, drive me to doctor appointments, buy my medicine)..... ......... 16. I can not depend on others to help me so I have to keep doing the things I usually do .................... xxi. - a a as can: a: 1: coca :znu n: c: :21: <31: 1: -e «:1: 52 2 12 $5 a a: 1: can: 17. I am able to manage well with the amount of assistance that I receive from others.............. 18. My friends don't give me any encouragement when I feel sad or blue due to my lung disease ..... 19. My family adjusts their activities so that I can do things with them that are not too hard for me due to my lung disease....... ............... 20. Someone calls me on the telephone several times a week just to find out how I feel.., ......... ‘ 21. It would be fairly hard for me to get a ride from a friend if I was unable to use other transportation to get to my doctor .............. ... 22. I feel thatOI:have friends who care about me and what happens to me as a result of my lung disease ...... . ............. . .............. .... 23. When I am not able to get outside due to my lung disease my friends visit me in my home. ....... 29. It would be fairly hard for me to get help from a friend if I was unable to do something myself because of my lung disease. ................. 25. I feel that my family and friends make an effort to understand my lung disease and how it effects what I.am able to do ....................... . ....... THE FOLLOWING QUESTIONS ARE ABOUT YOU AND UR DA Y AS THEY RELATE TO YOUR CHRONIC LUNG DISEASE. READ EACH STATEMENT CAREFULLY AND DECIDE IF YOU AGREE OR DISAGREE THAT THE STATEMENT DESCRIBES THE WAY YOU ARE DOING THINGS NOW BECAUSE OF YOUR HEALTH. TO HELP YOU EXPRESS YOUR OPINION, POUR POSSIBLE ANSWERS HAVE BEEN PLACED BESIDE EACH STATEMENT. CHOOSE THE ANSWER W AND CHECK THAT BOX. a: :»1n n: .exa 5:3 3 5'3 S6 1: a: -a cum :9 to m1 Egan . d < H H m 1: 01:1 1. I rest often when doing work around the house ...... 2. I am considerate of family members ................. ‘ xxii Ego: e: E5 2533 :znu n: 1m 1255 :31: 1: EB c:«= a: a .. as a: 1: 03:1 3. I often act irritable toward family members (for example, snap at them, criticize them). ..... .. 9. I have no difficulty reasoning and solving problems (for example, making plans, making decisions, learning new things) .................... S. I do not make many demands of family members (for example, insist that they do things for me, tell them how to do things) .................... 6. I act nervous or restless ................... . ...... 7. I sleep less at night (for example, I wake up early, can't fall asleep, awaken frequently) ....... 8. I am doing my usual physical recreation or activities........... .............................. 9. I isolate myself as much as I can from the rest of the family ........ ..... . .......... 10. I do social visiting by phone rather than mmmonO-OOOO. ....... .....OOOOOOO’OOOOOOOOOO ...... ll. I have no difficulty doing activities involving concentration and thinking ........................ . 12. I don't walk if I can avoid it ..................... 13. I am cutting down the length of visits With friends .......... ......OOOOOOOOOO 0000000000 .0. 19. I am doing the regular daily work around the house that I usually do (for example, yard work, repairs, cooking, cleaning)...... ........ .... 15. I stay away from home only for brief periods of time ............................................ 16. I act irritable and impatient with myself (for example, talk badly about myself, swear at myself, blame myself for things that happen) ....... 17. I telk.with people about my health ........ . ........ 18. I stay at home most of the time .................... 19. I forget a lot (for example, things that happened recently, where I put things, appointments) ...................................... 20. I sleep or nap during the day ...................... XX Iii is H 52‘. can: as 1: can: zcn a: L: :zco <31: 1: as GO END or 1113er NS J. '19. When do you have difficulty in breathing? (CHeck one) Only when doing very strenuous activity Only when climbing hills or stairs but not during normal daily activities Sometimes during normal daily activities but not while at rest Sometimes at rest and frequently during normal daily activities ‘END OF QUESTIONS Thank you very much for the time and effort that you have contributed to this study. Assistance such as you have given is extremely important and will aid in the understanding of how to best help peOple with chronic lung diseases. vPlease fill out and mail the enclosed post card if you would like to receive a summary of the results of this study when it is completed. xx_‘vi APPENDIX F RAW FREQUENCIES THE FOLLOWING QUESTIONS ARE ABOUT CHRONIC LUNG DISEASES SUCH AS CHRONIC BRONCHITIS, EMPHYSEMA AND CHRONIC OBSTRUCTIVE PULMONARY DISEASE (COPD). PLEASE CHECK THE ONE CORRECT OR BEST ANSWER FOR EACH QUESTION. IF YOU ARE UNSURE ABOUT THE CORRECT OR BEST ANSWER, ANSWER WITH YOUR BEST GUESS. PLEASE CHECK.ONLY‘Q§§ ANSWER FOR EACH QUESTION. * 1. Chronic bronchitis, emphysema and COPD are diseases that: 0 a) can be cured in a short time with medicine. b) cannot be cured but can be helped by medicine. c) can be cured by surgery. 2. A common symptom of chronic lung disease is: 2 a) chest pain. U h) blood in the sputum. c) shortness of breath. 3. One important cause of chronic lung diseases such as chronic bronchitis, emphysema and COPD is: 30 a) smoking cigarettes. b) lack of vigorous exercise. c) an accident which injures the lungs. 9. It is not unusual for people with chronic lung disease to: 9 a) have frequent headaches which become worse with exercise. 1 b) gain a lot of weight as they decrease their exercise. 25 c) have a hacking cough which has been present for many years. 5. Chronic lung diseases such as chronic bronchitis, emphysema and COPD cause people who have them to: 28 a) have difficulty moving air in and out of their lungs. b) become allergic to many things which did not used to bother them. 0 c) undergo a change in the size and shape of their lungs. 6. Chronic lung diseases such as chronic bronchitis, emphysema and COPD are made worse by: a) straining the lungs with vigorous exercise such as jogging or swimming. 27 b) continued exposure to irritants such as tobacco smoke and air pollution. 3 c) living in an area where the weather is often damp or cold. 7. Mucus in the lungs becomes a problem for people who have a chronic lung disease because: 31 a) it becomes trapped in the lungs and reduces the airflow. 5 b) it increases their chances of developing blood clots and strokes. 0 c) it eats away at the delicate tissue of the lungs. * Deleted from scale xxvii *10. The person who is most likely to develop a chronic lung disease such as chronic bronchitis. emphysema or COPD has: 9 a) a history of many other diseases which run in their family. 26 _b) a history of heavy smoking for a period of ten to twenty years. 1 c) a history of overweight and lack of exercise for a period of ten to twenty years. One important function of the lungs is to: 31 a) get oxygen to the blood so that it can be carried to 0 the cells. b) filter the air breathed in so that impurities don' t get to the blood. 0 c) provide a cushion within the chest to give protection to the heart. One reason that people don‘t quickly realize that they have a chronic lung disease such as chronic bronchitis, emphysema or COPD is: 3 a) it is not possible for doctors to diagnose chronic lung diseases until a person gets a lung infection. 5 b) chronic lung diseases occur most frequently in people from 90 to 60 years of age and it is normal for a person to be more short of breath as they get older. 23 c) changes in breathing capacity happen so slowly that they are not noticed. THE FOLLOWING QUESTIONS ARE ABOUT THE WAYS IN WHICH PEOPLE WITH CHRONIC LUNG DISEASES SUCH AS CHRONIC BRONCHITIS,‘EMPHYSEMA AND CHRONIC OBSTRUCTIVE PULMONARY DISEASE (COPD) ARE TREATED AND ADVISED TO TAKE CARE OF THEMSELVES. PLEASE CHECK THE ONE CORRECT OR BEST ANSWER FOR EACH QUESTION. IF YOU ARE UNSURE ABOUT THE CORRECT OR BEST ANSWER, ANSWER WITH YOUR BEST GUESS. PLEASE CHECK ONLY‘QEE ANSWER FOR EACH QUESTION. 1. If a person with a chronic lung disease catches a cold they should contact their doctor: 19 _a) as soon as they feel a cold starting. 12 ___b) if they have a fever. 1) :c) if someone else at home catches cold too. When a person has a chronic lung disease it is important for them to: 18 a) keep active so that their muscles do not become weak. b) avoid activity so that it is easier to breathe. c) continue exercise when it is hard to breathe so that their lungs will have to expand. To avoid catching cold a person who has a chronic lung disease should: 2 a) stay indoors during cold weather. b) keep their home heat set at 75 or above. 29 0) dress appropriately for the weather when going outdoors. * Deleted from scale xxviii ‘*lO. Broncho-dilators (such as Theolair, Bricanyl) are used in the treatment of chronic lung disease in order to: 29 a) expand the airways. b) loosen secretions in the lungs. 0 c) prevent infection. The most important thing for a person with a chronic lung disease to do when short of breath is: 0 a) lie down on a firm bed or a recliner chair. 31 b) relax and breathe out (exhale) slowly. Q c) breathe faster to increase oxygen supply to the lungs. Side effects of broncho-dilators (such as Theolair, Bricanyl) which should be reported to the doctor include: 29 a) upset stomach, jitteriness and rapid heartbeat. 5 b) headache, excessive sweating and fatigue (tiredness). 1 c) skin rash, swollen glands and sore throat. Inhaling (breathing in) through the nose rather than the mouth results in: - 6 a) less chance of getting an infection. 8 b) increasing the percentage of oxygen which gets to the lungs. 17 c) warming and moisturizing the air before it gets to the lungs. When a person has a chronic lung disease coughing: 3] a) helps move phlegm (sputum) out of the lungs. Q h) causes the spread of infection within the lungs. Q c) dries up the normal moisture in the lungs. The most effective breathing pattern for a person who has a chronic lung disease is: 9 a) inhale (breathe in) and exhale (breathe out) through the mouth, taking quick shallow breaths. 27 b) inhale (breathe in) through the nose, exhale (breathe out) through puckered lips, breathing slowly. 0 c) inhale (breathe in) and exhale (breathe out) through the nose, taking breaths as deeply as possible. A person with chronic lung disease should be aware that if they develop an infection they may experience the following symptoms: 1 a) chest pain, extreme fatigue (tiredness), headache with blurred vision and dizziness. O b) nausea, vomiting, diarrhea, aching muscles and a feeling of extreme weakness. 30 c) fever, change in color or thickness of phlegm (sputum), increased shortness of breath and coughing. * Deleted from scale xxix THE FOLLOWING QUESTIONS ARE ABOUT YOU AND THE-WAY‘YQU TAKE CARE .DF.YDUBSELF IN RELATION TO YOUR CHRONIC LUNG DISEASE. PLEASE CHECK THE BOX WHICH MOST CLOSELY DESCRIBES HOW OFTEN YOU DO EACH OF THE FOLLOWING ACTIVITIES. REMEMBER, YOUR“ ANSWERS mARE CONFIDENTIAL AND THERE ARE NO RIGHT OR WRONG ANSWERS. :z :z n. n. :51u . 2,2 as .32 >1 91 an a, e- 15 3 fiam 9“ 119 a 4 20E ca AGE 2 * l. I take care to aVOId very dry air.. ........... . ............ ........ 6 8 7 5 5 2. I smoke cigarettes....................... 0 ‘9 2 1 3 22 3. I contact my doctor if my phlegm (sputum) is a different color or is thicker than usual... ........ . . .......... . ..... . . l9 6 9 9 3 9. I wait a few days before calling my 1 doctor if I think I am having side effects from my medicine ................. 8 U 3 9 11 5. I prac ice re axe reat ing ia- * phragmatic breathing) when short of 17 8 2 3 1 breatho..................................‘ 6. I take extra doses of a broncho-dilator (such as Theolair, Bricanyl) when I have trouble breathing ..... ................... 1 1 u u 21 7. I plan activities which reduce stress for . me (such as walking or gardening)........ 11 9 3 3 5 8. I avoid contact with spray products such as hair spray or spray deoderant......... 20 u 3 3 5 * 9. I become very anxious when I am short of breath......... ...... . ........ ...........1] 5 5 .5 ‘4 10. I forget to schedule checkups with my doctorOOOOOOOOOOOOOOOOO ......... 00.0.0... 1 1 1 3 25 ll. I plan my activities so that I can make the best use of the energy I have........ 18 9 2 2 0 12. I try not to let my family or friends know when a situation or activity is , causing me stress ....... .. .......... ..... 9 7 9 9 2 13. I contact my doctor when I have more shortness of breath than usual..... ...... 17 3 9 2 0 *19. I spend time with family and friends even when they have a cold or the flu.... 0 3 7 S 16 *15. I avoid extremes of heat and cold........ 19 7 5 u 1 * Deleted from scale XXX for m by my d0ct0r..................... :z :z a. 1A a. . an: a: as: a Ag“ 3“ mg“ a s “E“ a“ 119 a _ s 2.5 as sea 2 16. I wait a few days before contacting my doctor if I develop a fever.......... 1 5 5 3 15 17. I do tiltin e ercises ostural drainage)..g..f........f?..3.. ....... ... 3 9 2 9 13 * 18. I do not do any special planning for my diet ................................. 9 6 9 5 12 * 19. I keep as active as my physical conditfin allows .......................... ... ..... 25 9 2 0 0 20. I don't always dress appropriately for the weather when I go outdoors ...... S 3 9 9 10 * 21. During the flu season I avoid crowded 21 S 9 0 1 places.. ..... ............ ....... ........ * 22. I push myself to keep activeeven when an activity causes me to become short . of breath ........... . .......... . ........ 10 10 3 5 3 23. I make no special time to do things . which are relaxing for me....... ........ 5 3 7 9 7 29. I stay in rooms where people are smoking ........ . ......... ............... 9 3 3 1” 11 * 25. I do not take the medicine prescribed 5 0 0 3 22 DISEASE. THE FOLLOWING QUESTIONS ARE ABOUT THE KIND OF SUPPORT AND ASSISTANCE THAT YOU RECEIVE FROM FRIENDS AND FAMILY IN RELATION TO YOUR CHRONIC LUNG READ THE STATEMENT CAREFULLY AND DECIDE HOW YOU FEEL ABOUT IT. YOU WILL AGREE WITH SOME STATEMENTS AND DISAGREE WITH OTHERS. TO HELP YOU EXPRESS YOUR OPINION, FOUR POSSIBLE ANSWERS HAVE BEEN PLACED BESIDE EACH STATEMENT. CHOOSE THE ANSWER MOST LIKE YOUR OWN OPINION AND CHECK THAT BOX. >‘{ :13an an m as: 5E S 963 5:: 13 fl enfl ova: .¢ 1: can: 1. My family cares about me and what happens to me as a result of my lung disease .......... ........ 18 10 3 0 2. I have a friend or friends who would look after my home if I was sick and had to be 12 15 1 3 in the hospital ...... ...... ............... . ........... * Deleted from scale xxxi S 2352:“: “2231.1 11.1 SE5