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Efifi ' F ll a” V1; a "fiiw-filk‘mé 1&1 x1“: (93 ($111: , ‘3 :" ‘a‘fi oi t‘ 1:9". du~i ‘I'W‘ 'J‘lmQ'1v*v’ - Q 3‘ igfikiéau '3: i UNIVer‘ity This is to certify that the thesis entitled fl/C’C’é'fl 7716/77 5 JP gt’A/flé I //. 1/? “(7&77 @é'M/c‘é/t/ Mmd Jaw/y g/‘J (1/5/st flA/fl 7/7!) 6) egg/w ,6/ (WA/7 a 777éfl$ ' presented by @741“! VA ,&/V/G’/5 has been accepted towards fulfillment of the requirements for _ or soc/ice. .' , S , 9 degree in ”MKS/N7 1M. flea} / Major professor Date92 '/¢’/'7 0-7639 MS U is an Affirmative Action/Equal Opportunity Institution l l 3 in iiiiililll 433 bViESI.J RETURNING MATERIALS: Place in book drop to LIBRARIES remove this checkout from "3—. your record. FINES will be charged if book is returned after the date .hxh,, stamped below. _ L3; ifi.» . El” :13 . Q “I! 4/5‘orj <25 ”7 ABSTRACT PERCEPTIONS OF REHABILITATION BETWEEN HEMODIALYSIS CLIENTS AND THEIR SIGNIFICANT OTHERS BY Judith A. Daniels Using King's Nursing Model, this study was designed to describe the perceptual congruence between 28 hemodialysis dyads regarding the client's rehabilitative status and their satisfaction with that status. The Sickness Impact Profile (SIP) and a Satisfaction Survey was administered to a convenience sample. Reliability coefficients of the- study instruments were assessed to be acceptable. There was a moderate to high degree of perceptual congruency between the dyad members in the clients overall rehabili- tation and in the following SIP scales: Sleep/Rest, Home Management, Work and the overall physical dimension. No significant relationship was found between their percept— ions in the overall psychosocial dimension or in the SIP Scales; Social Interaction and Eating. The dyads did have similar perceptions of satisfaction with the client's rehabilitation yet, no consistent relationship was found between their perceptions of dysfunction with satisfaction. This information will add to the body of rehabilitation knowledge and offer strategies for nurses working with ESRD dyads. DEDICATION This project is dedicated to the 31 hemodialysis clients and their significant others who participated in this study. ii ACKNOWLEDGEMENTS Further acknowledgments are given to the following individuals, who provided continual encouragement and unending support: Bruce Daniels Bryan Coyle Diane White Marge and Dick Tuinstra TABLE OF CONTENTS LIST OF TABLES I O o o o o n o o o 0 o n o o o O o I 0 o o o o n o o I O o a o o o o 0 vii LIST OF FIGURES 0 0 o o o c n o o o o o o o 0 O 0 o o o I o o o o 0 0 I o o O o o 0 0 ix CHAPTER I. THE PROBLEM Purpose ................................. 2 Statement of the Problem ................ 3 Conceptual Definitions .................. 4 Background of the Problem ............... 6 Scope and Limitations of the Study ...... 12 Assumptions ............................. 13 Overview of Chapters .................... 14 II. THE CONCEPTUAL FRAMEWORK Introduction ............................ 15 End Stage Renal Disease Pathophysiology of ESRD ................................. 17 Clinical Manifestations of ESRD ......... 18 Clinical Management of ESRD ............. 20 REHABILITATION Introduction ............................ 21 The Concept of Rehabilitation ........... 22 Physical Dimension of Rehabilitation .... 27 Gainful Activity: A Dimension of Rehabilitation .......................... 30 Psychosocial Dimension .................. 34 Perception as a Key Variable ............ 37 Satisfaction ............................ 38 Nursing Theoretical Framework ........... 40 Summary ................................. 52 III. REVIEW OF LITERATURE Introduction ............................ 53 The Resurgence of Rehabilitation ........ 53 Recognition of the Client's Support System for Rehabilitation ............... 57 Physical Dimension of Rehabilitation: Physical/Gainful Activity ............... 64 Health Team Assessment of Rehabilitation.. 64 iv IV. V. VI. TABLE OF CONTENTS Correlation of Objective to Subjective Indicators of Physical Rehabilitation.... Subjective Assessment of Physical Rehabilitation .......................... Summary of Research Studies Relating to Physical Dimension of Rehabilitation .... Psychosocial Rehabilitation ............. Identification of Stressors Associated with Psychosocial Rehabilitation ........ Inclusion of the Client's Significant Other in the Study of Psychosocial Rehabilitation .......................... Summary of the Research Reviewed Relating to Rehabilitation .............. Reliability and Validity of the Sickness Impact Profile .......................... Summary ................................ METHODOLOGY AND PROCEDURES Overview ................................ Research Design ......................... The Sample .............................. Human Rights Protection ................. Operational Definition of Variables ..... Study Instruments ....................... Data Collection Procedures .............. Data Analysis Procedures ................ Summary ................................. DATA REPRESENTATION AND ANALYSIS Overview ................................ Results of Pilot Study .................. Descriptive Findings of the Study Sample. Sociodemographics of the Significant Others .................................. Reliability of the Study Instruments..... Analyses Pertinent to Study Questions.... Correlations Among the Sociodemographics the SIP and SS .......................... Summary ................................. SUMMARY AND CONCLUSIONS Overview ................................ Samples ................................. Sociodemographic Data of the ESRD Clients ................................. Sociodemographic Data of the Significant Others .................................. Implications of the Sociodemographics to Nursing Practice and Education ....... 95 100 102 108 109 109 110 112 114 121 132 134 137 138 138 139 149 I54 155 176 177 177 188 193 APPENDICES A. B. C. D. E. F. LIST OF RE TABLE OF CONTENTS Implications of the Sociodemographics to Nursing Research ..................... 196 Interpretation of the Major Research Questions and their Subparts ............ 198 Perceptions of Rehabilitation: Questions I, Ia, Ib, & Ic ............... 199 Implications of Question I, Ia, Ib, & Ic to Nursing Practice and Education ........ 208 Implications of Questions I, Ia, Ib, & Ic to Nursing Research ...................... 211 Perceptions of Satisfaction: Questions II and 11a ..................... 212 Implications of Question II and 11a to Nursing Practice and Education ........... 220 Implications of Questions II and IIa to Nursing Research ........................ 222 Modifications to the Theoretical Nursing Framework ....................... 223 Summary of Nursing Implications to Practice and Education .................. 227 Recommendations for Future Research ..... 228 Conclusion .............................. 230 Verification of Research Approval ........ 237 Letter of Introduction and Consent Form... 241 Sickness Impact Profiles ................. 247 Examples From Modified Sickness Impact Profile for the Significant Other......... 265 Satisfaction Surveys ..................... 269 Sociodemographic Surveys ................. 273 FERENCES 000000000000.coo-naooloooooooocoo 280 vi 10. 11. 12. 13. 14. 15. 16. LIST OF TABLES Summary of Research Instruments Administered... Clinic Locations and Distribution of Michigan Nephrology Dialysis Clients ................... Categories of the Sickness Impact Profile (SIP) IOOCOIOOOOOOOOOCOCOOOOOOOOIOOOOOO Reliability Summary of the SIP Across Three Field Trials coooo-c00......cocooooo-ooooo-oc'o Age Breakdown of the Hemodialysis Clients ..... Number of Hours and Days Spent on Dialysis by the Clients 00.0ooo00000.00oooooooooooouocooooo Number of Actual "Recovery" Hours Reported by the Clients 0.00000IOOQOOOOOQOOOOOIIIOI0.... Alpha Coefficients on the Satisfaction Survey.. Alpha Coefficients of the SIP DOOOCICOOCOIOOIOC Overview of SIP Scores and Correlations Between the Clients and Their Significant Others ..... Rank Order of Perceived Dysfunction by the Client and Significant Other .................. Correlations Correlations of Clients SIP Scores ............ of Significant Others SIP Scores.. Results of the Satisfaction Surveys from the Clients and Significant Others ................ Rank Order of Satisfaction Scores between the Clients and Significant Others ................ Correlation Using the Pearson r Between the Clients Satisfaction Scores and SIP Scale Scores vii 110 111 122 123 141 144 145 154 155 158 159 160 162 163 165 166 LIST OF TABLES Correlation Scores using the Pearson r Between Significant Other's Satisfaction Scores and SIP ScOreS I.OOOOOIOIICCOCOOIIIOCOOOOOOOIOODOO. 167 Correlation of Significant Others Scores on SIP and SS using the Pearson r ................ 168 Correlation of Client Scores on the SIP and SS using the Pearson r ........................ 168 Correlations using the Pearson r of Absolute Disagreement Scores Between the Client and Significant other 0.0.00.0...OOOOCIIOOIOOOOO... 170 Correlations using the Pearson r Between the Client Variables: Number of Chronic Illnesses, Recovery Time Post Dialysis, Age, Length of Kidney Disease and the SIP .......... 171 Correlations using the Pearson r Between the Client Variables: Number of Chronic Illnesses, Recovery Time Post Dialysis, Age, Length of Kidney Disease and the Satisfaction Scales .... 172 Correlations Between the Significant Others' Responses on the SIP to the Client Variables: Retirement and Employment Status .............. 174 Correlations Between the Significant Others Responses on the SIP to the Client Variables: Number of Hours on Dialysis ................... 174 Correlations using Pearson r Between the Amount of Information Received by SO and their Degree of Satisfaction with Client's Current Rehabilitation Status ......................... 176 viii LIST OF FIGURES InteraCtj-ng Systems OOOOOICOOOIOOIO0.00.0.0... Process of Human Interaction ................. Application of King's Theory to the Study Concepts ............................... Outcome of Incongruent Perceptions ........... Modification of King's Theoretical Framework.. Addition of Nursing to King's Framework ...... ix 43 44 48 50 224 226 CHAPTER I THE PROBLEM End Stage Renal Disease (ESRD) is a chronic lifelong illness necessitating either a kidney transplantation or a form of dialytic therapy for survival. The treatment options, for dialysis, once limited to only in-center hemodialysis, have been expanded to include: Hemodialysis- -both in-center and home, intermittent peritoneal dialysis (IPD), and continuous ambulatory peritoneal dialysis (CAPD). Each of these modalities are designed to mimic the kidney's basic processes of diffusion and osmosis. Regardless of the treatment modality, ESRD clients and their families are faced with numerous disruptions in their lifestyle. Adjustments to physical limitations, dietary restrictions, time commitments for dialysis, and a host of psychological factors can be dilemmas for any family dealing with ESRD. Unlike an acute illness, ESRD places the client and his/her family in a position which may require family and social role changes. Often these changes are realized by the clients and their families after being discharged to a chronic outpatient treatment modality. Through time, the client and his/her family must redefine role obligations that are not only mutually satisfying but also maximize the client's actual ability (Diamond & Jones, 1983). The ability to cope with the treatment regimen and the accompanying life changes will 2 ultimately affect the client's rehabilitative potential. Purpose The purpose of this study was two-fold; to describe the degree of perceptual congruence between an ESRD client and his/her significant other on physical, psychological, and gainful activity dimensions of rehabilitation and their degree of perceived satisfaction with the client's status. Information from this study will provide data for health professionals in promoting the rehabilitation of ESRD clients. Conceptual support is in part provided by Corbin and Strauss (1984). They note the importance of perceptual— congruence between clients and their significant others for establishing a new life trajectory that will be mutually satisfying. Incongruent perceptions in respect to physical expectations, and role responsibilities may precipitate a stressful, non-supportive environment impeding rehabilitation. The client and significant other work against each other in this situation expending precious energy fruitlessly. Therefore, the concept of perceptual congruence becomes critical as there is an assumed sharing and working together towards a goal. The goal, with it's associated activity, is the process of rehabilitation. Finally, the purpose of this study was to raise the consciousness of health care professionals regarding the complex nature of rehabilitation. Interventions must be realistic and geared towards both clients and their support networks if the goal of rehabilitation is to be realized by the ESRD population. Statement of the Problem The focus of this study was to examine the concept of rehabilitation in a sample of chronic hemodialysis clients receiving treatment at a large medical center in Southwest Michigan. Data were collected to answer the following major research questions and their associated sub— questions. I) What is the degree of perceptual congruence between the hemodialysis client and his/her significant other regarding the client's present overall rehabilitation status? a. What is the degree of perceived congruence between the client and his/her significant other on the physical dimension of rehabilitation? b. What is the degree of perceived congruence between the client and his/her significant other on the psychosocial dimension of rehabilitation? c. What is the degree of perceived congruence between the client and his/her significant other on the rehabilitation dimensions of sleep/rest, work, eating, recreation and pastimes, and home management? The second major research question was: II. What is the degree of perceptual congruence between the client and his/her significant other regarding their satisfaction with the client's present rehabilitation? I 4 One sub-research question was developed to elaborate further on question II: a. What.:is the correlation between perceived congruence on the dimensions of rehabilitation and their degree of perceived satisfaction with the client's rehabilitation status? Conceptual Definitions The concepts utilized in this research were defined in the following manner: End Stage Renal Disease Client A client who is medically diagnosed as having less. than ten percent kidney function thereby requiring dialysis for life survival. Significant Other Person living within the same household with the client and is identified by the client as a primary support. The relationship must have been established prior to the client's onset of kidney disease. The term dyad will be used in this paper to refer to the significant other and the client. Hemodialysis Technique in which blood is circulated outside the body through a filtration system. The goal is to remove toxic waste products from metabolism, excess water, adjust electrolytes, and correct metabolic acidosis. The hemodialysis process can be performed in a hospital based outpatient unit, or in the client's home. — Rehabilitation A restorative process through which an individual with chronic renal failure develops and maintains self- sufficient functioning appropriate to his/her environment. The components of rehabilitation will include the following: Sleep and rest, emotional behavior, body care and movement, home management, mobility, social interaction, ambulation, alertness behavior, communication, work, recreation and pastimes, and eating. These components will be measured as perceptions of rehabilitation and interpreted as rehabilitation status. Perceptual Congruence King (1981) defines perception as each human being's representation of reality. It is an awareness of persons, objects, and events in relation to how one perceives self, body image, home and space. Congruence is defined by Webster as that which is agreeable or harmonious (1981). In this study perceptual congruence of rehabilitation was defined as the degree to which the client and their significant other have similar perceptions of both the physical, psychological and gainful activity components of rehabilitation. Satisfaction Campbell, Converse and Rodgers (1976) conceptually define satisfaction as an affective expression denoting a feeling of well-being. The basis for determining the degree of satisfaction is through the cognitive judgement 6 of a current situation laid against external standards of comparison. The external standard for comparison may be to other people or more private levels of aspiration. Each frame of reference is highly individual and can be expected to differ from person to person. The subjects of this study were not given a particular frame of reference for assessing their satisfaction with the various rehabilitation dimensions. This was purposefully avoided to allow for individual interpretation, since the subjects were expected to be at different points within the life cycle and the disease process itself. Potential differences within the frame of reference will be explored- in the interpretation of the data. Background of the Problem From inception, the concept of rehabilitation has been recognized as an integral component of the dialysis program. Taylor (1978) cites the initial objectives of dialysis programs was to do more than provide a medical treatment to prolong life. The dialysis process was to be a vehicle for returning the individual to some semblance of his previous lifestyle. The process of restoring a previous lifestyle is commonly referred to as rehabilitation. Studies conducted to examine rehabilitation have until recently been sparse and inconclusive. In fact, the emphasis placed on rehabilitation was not given much attention until the mid 1970's. Gutman Stead & Robinson (1981), summarizes the ‘- 7 focus of the early research efforts as a time when the actual dialysis process was considered a scientific frontier. Researchers working with the ESRD population focused their attention on evaluating the effectiveness of the actual dialysis process for long-term survival. Certainly one could not criticize the early researchers for their narrow focus on life survival. Rather, their efforts must be viewed as the key to "Pandora's box." Early researchers could not foresee the long-term implications of dialysis, either physically or psychologically. Furthermore, the strong work ethic which prevails within American society fairly well assumes that all individuals- will make every attempt to be productive. Quite possible, both the medical and governmental sectors felt that, by providing a reasonable guarantee for survival, dialysis would not interfere with self-attainment of a productive, full life. Interestingly, one can correlate the enactment of governmental policies and the intent under which they were founded with the direction of the early researchers. When the ESRD program was established by section 2991 of the Social Security Amendment in 1972, the enactment was geared to prevent financial catastrophe for the patients and at the same time provide monies for ESRD research. Virtually all clients who required chronic dialysis or transplant- ation were eligible for medical coverage and disability. Eligibility was contingent on meeting one of the following 8 stipulations: the client was currently insured under Social Security at the onset of disease, was a monthly Social Security beneficiary, or the spouse or dependent child of an eligible person. The ESRD program began operation with approximately 11,000 beneficiaries and paid out benefit payments of about 229 million dollars. By calendar year 1979, there were 42,500 clients on dialysis receiving a total of almost 985 million (H.C.F.A., 1982). Up to this point, there were no incentives for providing cost—effective therapy. The system was designed for retrospective reimbursement with few regulations designed to foster rehabilitation. Clients. were provided with not only free or minimal-cost dialysis but also Social Security disability pay. Clearly, the original intent of the governmental reimbursement policies and the medical researchers was achieved. Families were protected from financial catastrophe, and life survival on dialysis was perfected. By 1978, the H.C.F.A. began enacting amendments to help alleviate the rapidly increasing expenditures. In 1981 the Omnibus Budget Reconciliation Act (P.L. 97-35) required the H.C.F.A. to devise a more efficient method to pay for dialysis. Subsequently, efforts were directed at establishing a prospective system for payment. At this time, 3.8% of the total Medicare benefit payments were allotted to approximately 60,000 clients. That so much is expended on so few, caused some to 9 question whether the Medicare ESRD program should continue to consume such a large proportion of the health care budget. In order to justify the value of the ESRD program, health care workers and legislators turned to the research for rehabilitation data. Unfortunately, the research was found to be limited and dated. Gutman et al (1981), reveals that the studies conducted in the 1960's pointed to a high level of debilitation among the ESRD population. He cautioned the readers of these studies to interpret the findings with due respect, for the emphasis at that time was placed more on the dialysis process and the characteristics of the. population, excluded older and sicker patients. In addition, several other problems were noted in the studies conducted in the late 1960's and 1970's; They were limited to small sample size, included only home dialysis patients and/or utilized samples from only one institution. In lieu of the renewed emphasis on rehabilitation Gutman et al (1981) published his own plea for rehabilitation data that encompassed a holistic approach to rehabilitation. Concurrently, a task force was convened by H.C.F.A. to evaluate "model" rehabilitation programs, evaluate disability payments, and structure reimbursement to encourage self-care. One such incentive was to reimburse centers at the same rate for clients who dialyzed either at home or in-center. Home dialysis was viewed as a Vehicle to foster independence, increase control over the 10 treatment process, and increase client comfort while at the same time controlling costs. In 1982, 17% of all dialysis treatments were conducted in the home, with an anticipated increase to 30-40% over the next five to seven years (H.C.F.A., 1982). The need to foster research on rehabilitation in light of the policy changes is of critical importance. The insurgence of home dialysis therapy with its financial incentive for dialysis programs may lead to higher percentage of home clients who are not capable or without adequate support to dialyze at home. The end result may have financial benefits but could severely hamper the_ quality of life in the dialysis population. Finally, one can note the conceptual evolution of rehabilitation within the literature in conjunction with the reimbursement policies. Employment status was initially the measure by which patients were evaluated. This measure lent itself easily to the field of research and provided an interpretable yardstick for monitoring a patient's progress. Yet, such a limited definition of rehabilitation is no longer applicable to the total population now served by dialysis. Employment, is not the best indicator of rehabilitation for the individual who lacks a stable employment history, who is at retirement age, or who does not work outside the home, nor is it applicable for the very young (Kutner, 1983). Additionally employment does not provide information about other IIIIIIIIIIIII-—____________________________________________________1, 11 important variable critical to rehabilitation-personal satisfaction-family involvement, community participation, social or recreational activities and corresponding psychological well-being. Therefore, rehabilitation must be viewed in a holistic manner that encompasses both a physical and psychological component. Just as the measure of rehabilitation needed to be expanded so do the factors which influence the clients potential. Several authors have speculated on the following intervening factors: The client's physical endurance, restrictions on diet and time, response to psychosocial stress and degree of mutuality regarding the' client's capabilities between the client, his family, and the health care team. (Decker, 1979; De Nour, 1981; Levy, 1979; Taylor, 1978; Chyatte, 1979; Hollon, 1979; and O'Brien, 1980). The way a client views himself, as well as how others perceive his situation, can make a difference in the client's overall response to the illness. Previous studies have tended to focus on the health team's perception of client rehabilitation and/or the client and his family's perception of the illness as it affect them (Baldree, Murphy & Powers, 1982; Hatz & Powers, 1980). Equally necessary, and probably foremost, one should look at the perceptions of the client and his significant other regarding the client's present rehabilitative status and his/her degree of satisfaction. From this, mutuality can be incorporated into goal strategies and energies 12 appropriately directed towards maximizing the Client's potential. Scope and Limitations of the Study The following limitations are recognized as be inherent within this study: ing 1. The Sickness Impact Profile has not been evaluated for validity or reliability in measuring the perceptions of other individuals regarding the client's rehabilitation status. 2. Due to the small number of participants, results can not be generalized to a larger population. 3. The participants were not selected via random sampling, but were a convenience sample. This again limits the ability to generalize to a larger population. 4. Results are reflective of the specific dialysis unit from which the participants were obtained. This will limit generalization due to potential philosophical differences that occur between dialysis centers. 5. The study is not longitudinal in design and, therefore, the results will reflect a one—time measure only. 6. Confounding variables such as past history of disease, perception of health care professionals, types of interventions given pre—dialysis to promote the rehabilitation and family dynamics will not be addressed. 7. The measurement of perceived satisfaction 13 based on the criteria components of the SIP will have only a one-time measure of reliability and validity. Assumptions For the purpose of this study, the investigator made the following assumptions: 1. The focus of nursing is the interaction of human beings with their environment. The goal of this interaction is to assist the individual to function in various social roles. 2. End Stage Renal Disease is a paradigm for chronic illness. Both physical and psychological stressors exist which affect the client and his/her spouse and ultimately the client's rehabilitation. 3. Perceptions of the client's disability by the client and his spouse will influence their interactions and subsequent transactions. 4. Incongruent perceptions will cause increased personal stress for the dyad and interfere with their growth in the life cycle. 5. The goal for nursing is to facilitate communication between the dyad to identify current perceptions for mutual goal setting toward successful rehabilitation. 6. The revised SIP will be sensitive to the significant other's perceptions of the client's rehabilitation status. 7. The participants will respond honestly and to hiun-...____.___________________________________________________________I111111111L______--IIIIII 14 the best of their ability. Overview of Chapters Presentation of this research project is organized into six chapters. Chapter One is an overall introduction to the problem and questions of interest. Basic definitions, purpose, limitations, and assumptions are outlined. In Chapter Two the concepts and theories relevant to the study are interrelated. The nursing theorist, which provides a unifying framework for the concepts, is presented. Chapter Three will entail a review of recent literature about the process of rehabilitation within the dialysis population. This review will provide past research findings related to the concepts of interest. Methodology and procedural steps are outlined in Chapter Four. A description of the sample, setting, data collection procedure, instruments, scoring procedures, and human rights protection are addressed. In Chapter Five an overview of the various statistical measures utilized with the data is presented. In Chapter Six, the data are compared to other research studies and implications for nursing practice, education and research are discussed. CHAPTER II CONCEPTUAL FRAMEWORK Introduction The diagnosis of End Stage Renal Disease (ESRD) precipitates a life crisis for clients and their significant others. One only needs to examine the typical medical regimen of dietary restrictions, time requirement for treatment, and daily medications to understand the magnitude of changes imposed by chronic renal failure. The major goal <3f health professionals working with the ESRD population is to aid the client in making a life adaptation— to dialysis that will allow continual functioning throughout the life cycle (Hadge, 1983). Unfortunately, there are many impediments to such an adaptation. Individual reaction to the illness will depend on the client's personalized symbolic meaning of the illness, pre- existing adaptations, object relations, intrapsychic conflicts, and available support (Hadge, 1983). The goal of this research study was to elucidate further on the dimension of support from which implications for nursing practice can be suggested. The following research questions were developed based upon the study's goal: I. What is the degree of perceptual congruence between the hemodialysis client and his/her significant other regarding the client's present 15 and II. a) b) C) 16 rehabilitation status? What is the degree of perceived congruence between the client and his/her significant other on the physical dimension of rehabilitation? What is the degree of perceived congruence between the client and his/her significant other on the psychosocial dimension of rehabilitation? What is the degree of perceived congruence between the client and his/her significant other on the rehabilitation dimensions of‘ sleep/rest, work, eating, recreation and pastimes, and home management? What is the degree of perceptual congruence between the client and his/her significant other regarding their satisfaction with the client's present rehabilitation? a) What is the correlation between perceived congruence on the dimensions of rehabilitation and their degree of perceived satisfaction with the client's rehabilitation status? The following concepts found within the study questions will be explored both separately and as they relate to each other: End Stage Renal Disease, 17 Rehabilitation, Perceptions, and Satisfaction. Imogene King's theory of the dynamic interacting system was used to provide further guidance in explicating the interrelationship of the concepts. End Stage Renal Disease Pathophysiology of ESRD A brief overview of the pathophysiology, clinical manifestations and medical management of ESRD is provided. The purpose is to assist the reader in gaining a better perspective of the numerous challenges imposed upon the client. The chronicity of the physical problems along with the client's coping abilities will determine his/her‘ overall rehabilitation. End Stage Renal Disease is a condition with multiple etiologies. A variety of pathological processes are involved in renal failure: Congenital anomalies, genetic abnormalities, immunologic processes, infection, toxic reaction, obstruction, vascular changes, neoplastic growth, and metabolic changes. Each of these processes have different physical presentations with medical management individualized accordingly. Initially, the treatment goals of ESRD are to preserve kidney function through dietary and pharmaceutical measures. Once conservative management is no longer effective, the sequel of problems associated with dialysis become universal within the ESRD population. Bauers (1983), characterizes' ESRD "as the state in 18 which the function of the kidney is impaired to the degree that life is threatened and the impairment is not reversible" (p. 17). At this point, the kidneys have ceased to remove metabolic wastes and excess water from the blood. The degree of impairment determines the need for dialytic therapy and, in most cases, 80% of the nephrons may be lost before the client is ever diagnosed with ESRD. Typically, when there is less than ten percent functional renal tissue, dialysis therapy becomes imperative for life survival (Brundage, 1980). Clinical Manifestations of ESRD End State Renal Disease is often an insidious disease. The client may be asymptomatic for years and diagnosed only through a routine physical. When considerable renal tissue is lost the client begins to experience a cluster of symptoms attributed to the uremic syndrome. Brundage (1980) describes this syndrome as a complex of symptoms, physical findings, and biochemical changes caused by the retention of the products of nitrogen metabolism and associated changes in water, electrolyte, and acid-base balance. Client assessment will result in identifying the altered internal homeostasis. The typical physical findings upon examination include: generalized edema, hypertension, cardiac irregularities, dyspnea, depressed neurological reflexes, depressed sensorium, and changes in the skin integrity (Brundage, 1980)- 19 These physical alterations are a result of the high serum concentration of nonprotein nitrogens, especially urea, and other urinary retention products such as creatinine, uric acid, phenols, guanidine bases, sulfates, phosphates, and potassium (Guyton, 1981). Several other metabolic processes altered in ESRD also contribute to the physical symptoms experienced by the clients. Changes in calcium metabolism as a result of the kidneys inability to activate vitamin D causes a progressive osteoporosis. The result of this alteration leads to fractures of the ribs, long bones and vertebrae. Equally distressing is the chronic anemia due to the decreased production of erythropoietin by the kidney. Resulting from this deficiency is the chronic fatigue frequently cited by the clients (Friedrich, 1980). In addition to the physical problems noted above, are several other changes experienced by many clients. One of the most distressing is a reduction in their sexual activity. The exact etiology of this dysfunction is unclear, although the retention of metabolic by-products has been implicated. The accumulation of these toxic substances has also been cited as the cause of anorexia, nausea, vomiting and an altered taste sensation (Brundage, 1980). Many of these problems will occur before the actual need for dialysis exists. Once the renal function is no longer compatible with life, dialysis must be initiated. 20 In severe cases of complete renal shutdown, death will ensue in 8 to 14 days if left untreated. Clinical Management of ESRD Since 1960, the technology of dialysis has literally blossomed. The ESRD population at that time had at least one option available for long-term survival--hemodialysis. Now, 24 years later, the client is given several choices for treating his/her disease. Chronic hemodialysis, chronic ambulatory peritonital dialysis, and transplantation. Hemodialysis continues to be the first mode of therapy prescribed for most patients, and often the preferred choice by many. The basic principle of dialysis is the differential diffusion of solute through a semipermeable membrane separating two solutions. Hemodialysis involves circulating the client's blood through a filter that is semipermeable and surrounded by a dialysate solution in a so-called artificial kidney (Brundage, 1980). The forces of osmosis and diffusion undergird the dialysis process. Hemodialysis is required anywhere from three to four times a week, four to six hours per treatment. Even under the best of conditions hemodialysis, due to its intermittent nature, is unable to completely eradicate the physical ramifications of ESRD. At best, the symptoms can be controlled when hemodialysis is combined with dietary restrictions and medications. The objective of dietary management is to assist the 21 hemodialysis treatments by reducing the amounts of urea, fluid, and electrolytes (especially potassium, sodium, and phosphate) that must be filtered. Abuse of dietary restrictions can result in a buildup of toxic fluids and metabolic end products in the bloodstream. These may in turn result in nausea, weakness, cardiovascular problems, and even death. Medications are prescribed for phosphate binding, prevention of vitamin deficiencies and at times hypertension. Thus, successful treatment of ESRD depends not only on the efficiency of the dialysis treatments, but on the client's adherence to a comprehensive treatment plan. REHABILITATION Introduction The treatment regimen as previously described requires the individual and his/her significant other to make conscious adjustments to their daily and future plans. "This catastrophic illness imposes enormous losses and narcissistic insults on patients and their coping abilities" (Hadge, 1983, p. 51). The client is placed in a dependent position within the medical system as well as his/her family. In addition, the client finds him/herself reliant on various community services such as transport- ation services, availability of dialysis services and emergency support systems. Furthermore, the client finds his/her financial situation dependent on the federal and state welfare system. These dependency issues only serve 22 to compound the clients difficulties in adjusting to the physical functional losses. When Medicare was extended to victims of renal failure in 1973, the purpose was not only to save lives, there was an equal expectation that clients would be able to successfully incorporate the regimen into their daily lives, and thereby said to be rehabilitated. Unfortunately, much of the recent evidence of rehabilitation points to a debilitated population (Lundin & Lundin, 1983). The following paragraphs will explore not only the concept of rehabilitation as it relates to End Stage Renal Disease, but also the relationship between the sick role and rehabilitation. The Concept of Rehabilitation Several authors have identified three major components of rehabilitation: Physical status, gainful activity, and psychosocial adjustment (Czaczkes & De-Nour, 1978; Kutner, 1980; Matthews, 1980). Each of these components are impacted in several ways, one of which is the meaning and value placed on the sick role by the client and significant other. The hemodialysis dyad are challenged throughout the course of ESRD by numerous role changes. The first role presented to the client is the sick role paradigm as outlined by Parsons (1951). He/she is placed in a dependent position with the medical system and is relinquished of responsibilities associated with both job 23 and family. The client is often too sick as well as being awed by the technology of dialysis to object to this dependent position. Once the client is medically stabilized and discharged to a chronic dialysis regime, the sick role no longer provides guidelines for hemodialysis clients and their significant others in adjusting to the chronicity of ESRD. Medical personnel assign the term "disabled" to the client as though this clearly differentiates the client from one who is acutely sick (Safilios & Rothschild, 1970). Unfortunately, this new role brings considerable confusion to the client and significant other. The dyad begins to deal with the notion of perpetual treatment without cure in absence of a set of acceptable guidelines from society or the health team (Landsman, 1979). This ultimately places the client in a precarious position by both the significant other and the health team. Landsman (1979) describes this position as that of a "marginal man," living in both the sick and well worlds. On one hand, the client is reminded of his dependence on dialysis and its associated restrictions, yet is told to resume previous life responsibilities by not fixating on the disease. In this situation, the client is subject to normal expectations for functioning despite the limitations imposed by the disease process. Clients who are unable to meet these expectations may respond by proving they are indeed sick. In this case, the client disables him/herself 24 in an attempt to obtain social validation for the illness. Coupled with the notion of being a "marginal man" are the problems exposed by Falvo, Allen, and Maki (1982). They have applied the concept of having an invisible disability with impediments towards rehabilitation in the ESRD population. Since kidney failure may not provide an atypical appearance or a readily observable functional limitation to those interacting with the individual, there are no cues emitted--causing others to alter behavior or expectations. The individual's overall rehabilitation may be intertwined with his/her perception or misperception of the reactions of others. The absence of readily observable disabilities may not expose the client to the environmental feedback system that creates for the client the reality of the condition. This lack of feedback may limit the clients own awareness of his/her situation thereby creating confusion for both the client and his/her significant other (Landsman, 1979). The ability of the client and his/her significant other to satisfactorily alter their usual role responsibilities is dependent upon congruent expectations of the disabled role. Furthermore, the dynamics found within the client support networks prior to the onset of a Chronic disease will also affect the client's ability to renegotiate role responsibilities. Diamond et a1 (1983) asserts that families respond to the sick role based on the extent to which the individual 25 is integrated within the family, degree of isolation from their extended family, and their linkages within society. For the most part, families are able to readjust their activities to accommodate the sick role. The readjustment of family power and roles is usually underscored by a belief that the family will soon return to their normal state; chronic illness disrupts this belief. Both the degree of perceived disruption within the family unit and their perceptions of the clients phySical dysfunction, will effect the family's adjustment. The family may respond by either perpetuation or total relinquishment of the sick role. In either situation, the client's environment will serve to be more frustrating than supportive in promoting rehabilitation. Levy (1979) postulates that clients become discouraged by the disparity of expectations between themselves, their families and the medical team. Ultimately, medical complications may be aggravated by an inability to live comfortably with an appropriate and viable self-image. Another problem which may arise involves the impact of role changes to the family structure. Role reversal is common, with the partner assuming new responsibilities in addition to ones previously assumed. The client may no longer identify him/herself within the family structure as being useful or needed. The significant other, by not expecting the client to assume usual activities, fosters his/her feelings of uselessness. This may not be a 26 conscious act; but rather, is their way of trying to make life easier for the client. Unfortunately, certain things may be made too easy. For instance, the client may be relinquished from the breadwinner role, household chores, maintenance, childrearing responsibilities, companion to his/her spouse, and attendance at social functions. The issues surrounding role readjustment ultimately affect the way in which the client's self-image is reshaped. Compounding the problems of carving out a new social role arrangement is the perceived dependency and anxiety associated with the dialysis procedure. "Only very few other forms of medical treatment place the patient in so abject a situation of dependency on equipment, procedure, and personnel" (Levy, 1979, p. 60). Anxiety may occur in response to being away from the dialyzing apparatus, or emerge as a result of being kept on the artificial kidney for extended periods of time. These two reactions can be viewed as opposite sides of the dependency spectrum: The former as over dependency, and the latter as "over independency" on the dialysis procedure. De-Nour, and Czaczkes (1975) describe the highly dependent clients as ones who "enjoy" dialysis and find it difficult to be rehabilitated because of their need to continue in a highly dependent relationship with their illness and the procedure. These clients may regress and assume a childlike position of being cared for, thus making them less productive than the expectation of staff, family, and 27 even the emotionally healthier side of themselves. Paradoxically, the highly independent client has equal difficulty. The independence may serve the client defensively as a method of disowning his/her dependency. Faced with the necessity to tolerate dependence upon a machine, these clients may respond with anxiety, depression, and uncooperativeness, including dietary indiscretion (Levy, 1979). Ideally, the dialysis client should come to terms with the reality of his/her abject dependency upon the procedure while maintaining sufficient independence. The goal should be to engage in the highest degree of work, family, and other activities within the limitations of his/her illness and its treatment. The components of rehabilitation; physical, psychosocial and gainful activity, will now be discussed. The order of presentation is not meant to depict order of importance. Physical Dimension of Rehabilitation The dialysis process itself can be a major roadblock in the way of returning to a more normal life. "Just as the large accumulation of wastes and fluid make the patient ill, a rapid reduction in the accumulation of waste products which occurs during hemodialysis is also stressful" (Friedrich, 1980, p. 252). A condition known as "dialysis disequilibrium syndrome" may result from the shifting of water, pH, and osmolarity. Consequently, the Client may experience nausea, vomiting, and headaches. 28 This syndrome is only one of the myriad of physical complications associated with chronic hemodialysis. The following list of common complications has been identified as being pertinent to the rehabilitation process: 1. Blindness or diminished visual acuity. 2. Muscle cramping which may persist, after dialysis thereby interfering with mobility. 3. Fatigue--a subjective symptom which can be the result of or the cause of limited activity levels. 4. Hepatitis--even a positive hepatitis antigen titer can interfere with rehabilitation efforts such clients who elect to travel will have difficulty being accepted for transient dialysis. 5. Digestive disturbances--a variety of problems may occur from intermittent constipation and diarrhea, nausea, frequent belching and flatus, to gastrointestinal bleeding. 6. Osteodystrophy--may range from bone pain to overt deformity interfering with motor performance. 7. Peripheral neuropathy--sensory and/or motor loss is frequently reported. Problems occur at rest in which the client feels he/she cannot keep his/her feet still. Additionally, the client may also have a burning paresthesia of the soles of the feet (Chyatte, 1979). The efficiency of the dialysis treatment is a major factor in the number and severity of the complications. Dialysis therapy has a wide range of possible outcomes, from those in which uremic signs and symptoms are absent to 29 those in which the recurrences of uremic complications are fairly frequent (Lundin & Lundin, 1983). Such variables as rate of blood flow, dialyzer surface area, time spent dialyzing, and adherence to dietary restrictions are directly proportional to the physical complications. The presence of other major medical conditions also predisposes the client to complications. Certainly, a client who rarely feels well is unlikely to be rehabilitated (Lundin & Lundin, 1983). The client is apt to be overwhelmed by the constant barrage of physical ailments to consider the possibility of a normal existence. Functional losses as a result of physical impediments may be assessed through examination of both measurable, objective data and subjective data from the client regarding his/her mobility, activities of daily living, and activity schedule (Chyatte, 1979). Both of these measurements can elucidate on the degree of dysfunction but do not unequivocally point to physical complications as the sole responsible factor for the degree of dysfunction. This is demonstrated by those individuals who, despite severe physical impediments, continue to participate in the aspects of life involving vocation, family avocations, and the community involvement. Others do poorly in these areas despite being in better physical condition (Hatz & Powers, 1980). One potential explanation for the differences noted between clients relates to the amount of social validation 30 the client receives for the physical changes (Landsman,- 1979) A client who receives negative feedback regarding valid symptoms may be inclined to ignore the problems, feel hopeless and frustrated, and ultimately find him/herself without adequate support in adjusting to the new physical state. Diamond et a1 (1980) asserts that successful rehabilitation for the chronically ill is partially dependent on the recognition and reorganization of responsibilities based on the phySical limitations. She contends that the element of social validation will also influence the client's adherence to therapy which is intrinsically tied to rehabilitation. Additionally, the role adjustments and expectations which must be redefined between the dyad hinge on congruency of the perceived physical changes and subsequent functioning. The degree of satisfaction with the perceived degree of physical functioning could be a stimulus for setting goals towards a more satisfying level of rehabilitation. The following SIP criteria components will be utilized to measure the degree of physical functioning: Body care and movement, mobility, and ambulation. These components will help identify the degree of perceived physical dysfunction by the client and his/her significant other. Gainful Activity: A Dimension of Rehabilitation Rehabilitation has often been equated with gainful employment. Previously vocational counselors focused on facilitating the client in securing a job within the scope 31 of his/her capabilities. The underlying principle being that employment gave the client a sense of self-worth and purpose. Employment status also provided government regulatory agencies and health care workers with some distinct measurement of the efficacy of the treatment in restoring the client to a productive lifestyle. Certainly the value placed by society on the productive individual influenced the equation of rehabilitation and employment. Although gainful employment is important, it is not the sole component in successful rehabilitation; nor is it the most appropriate measurement of rehabilitation, especially within the hemodialysis population. The dialysis population has changed since its inception as a viable mode of therapy for chronic renal failure. The early clients were often young, "breadwinning" heads of families who had few, if any, other medical complications (Lundin & Lundin, 1983). Today the typical profile of a client would be of an older and often sicker individual. A growing number of clients are retired or eligible for retirement, as well as many clients who have additional disabilities such as diabetes, heart and lung disease. The overall demographic characteristics have also changed. No longer is the typical client a white, middle-class, well educated American. Rather, a percentage of clients are from the lower socioeconomic strata; who may lack job skills and never experienced gainful employment. These factors are compounded by the inherent 32 managerial and federal regulatory impediments placed upon clients who desire to seek employment (Gutman, et al, 1981). Therefore, paid employment cannot be the sole determinant of rehabilitation. Expecting clients to maintain full-time employment while undergoing chronic hemodialysis is analogous to expecting them to carry two jobs at once (Brown, 1974). The occupational issue is one that poses considerable difficulty for the client's self-image. The relationship between what we do and who we are is woven from childhood. The pressures from society, of which the dyad is a part, may criticize him or her for not working (Falvo, et al, 1982). In part, the concept of ESRD clients as having an invisible disability may be a causal factor in the stress associated with job loss. When others do not perceive that there is a disability present which may restrict certain behaviors, the resultant situation may involve frustration of normal expectations, provoking embarrassment or rejection in the extreme. In order to avoid negative reactions, the individual may do one of two things--ignore the limitations to the detriment of the condition or seek to prove his/her disability. In either case, the client ultimately loses. Other factors which have been found to influence the client's occupational status are reported by Levy (1979). Levy states that previous level of functioning, satisfaction with work, sick role, and client dependency 33 needs all substantially influence the level of vocational rehabilitation. Those who have been marginal in past endeavors may find the stressors of hemodialysis insur- mountable obstacles (Levy, 1979). One crucial factor which will impact the client's adjustment to the disease and treatment process is his/her support system. When family and staff have different expectations for the client's productivity than the client has, frustration and conflict will ensue. Families who treat the client as a limp appendage will probably soon see a self-fulfilling prophecy (Landsman, 1979). The family may not have started with a person severely handicapped, but they will produce one. Potentially the situation could be reversed, with the family setting up unrealistic expectations at the other extreme. The client may soon find himself entangled in self-defeating behavior, which carries him/her deeper into the maze of self-destruction and frustration with a resultant retreat into withdrawal and depression (Landsman, 1979). The first step in attempting to address this potential problem is by redefining employment. Employment must be defined so to encompass the activities of retirees, house- wives, volunteers, and students. The term "gainful activity" more accurately describes those activities assumed by the individual which are goal-directed and aimed toward the production or accomplishment of something. This component of rehabilitation will be measured by 34 utilizing the SIP criteria: Eating, home management, sleep and rest, work and recreation and pastimes. The criteria included in physical functioning will obviously impact the perceived degree of gainful activity. This association once again illustrates the complexity of rehabilitation. Psychosocial Dimension The psychological struggle of the client with chronic renal failure is not a simplistic matter, due to many interrelated variables. One variable felt to be a central stressor is the degree to which the client is struggling with the independency conflict (Levy, 1979; Landsman, 1979). The illness precipitates a loss of the individual's control of him/herself and his/her environment. Initially, the client moves from an active to passive role when initially hospitalized and becomes almost totally dependent on the medical staff, even with regard to the times he/she may eat, sleep, or use the bathroom (Landsman, 1979). In an acute situation, the client may be able to suspend his need for control; but the necessity of dialysis brings with it the ever-clinging albatross of dependence, not only on people but on machinery as well. The frustrations of this newfound passivity are worsened by an awareness of the fact that the controls are now in the hands of strangers (professionals who are assumed medically competent) and the awesome time interval-~the rest of his life (Landsman, 1979). This conflict is felt to be the underlying force Which can push the client into psychoreactive and ‘IIIIIIll-_____1 _11L 35 regressive states characterized by depression, aggression, or denial. His/her objective dependency can mobilize preexisting, underlying regressive tendencies; and, when coupled with dependent influences exerted by the health team and family, the client is apt to have a lower degree of adaptation to the process itself (Drees & Gallagher, 1981). The machine seems as a prosthetic device necessary for life, a major source of conflict over control of the client's life. The issue which must be resolved is: Does the client control his/her prosthetic device, or is he/she controlled by the device and its "operating servants"? The element of control over the machine, as noted by Drees and Gallagher (1981), is a strong desire for the client and will influence his/her dependency state. The client often feels like an uncontrolled, depersonalized entity only able to survive as an appendage to the machine and to the sociophysical system in which the machine is housed. The question of control over the process is reinforced by messages received by the client's interpersonal systems (i.e., family, spouse, physician). If the message of reverse dependence is reinforced by the significant other, the line of conflict is enhanced. The client may at this point attempt to exert some control over his situation and find his significant other exerting equal strength in an effort to keep the client in a dependent role. In this manner the significant other is able to control the F—_———” 36 I situation and avoid the underlying issue. This is likely to occur‘ if insecurities exist regarding traditional and expected roles (Drees & Gallagher, 1981). The degree to which the prosthetic device is under human/self-control and can be taken for granted will determine it's value as an instrument for regaining lost powers and improving the quality of one's life (Levy, 1979; Drees & Gallaher, 1981). Although at this point there are limited alternatives to dependence on dialysis, ways of encouraging the client to regain control have been identified. The concept of self-care dialysis is spreading, which builds in some of the control that has been removed (Landsman, 1979). The issue of control extends into other facets of the client's life, which ultimately relate to dependency and independency. One such variable is the degree to which the marital dyad's roles are perceived to be acceptably altered. One can easily see the enormous impact on the client's rehabilitation from the discussion on sick—role theory. In addition each of the three dimensions of rehabilitation, physical, psychosocial and gainful activity, presents a unique set of challenges for the client. Together a synergestic relationship is found in that each will be influenced as well as be influenced by the perceptions held by the client and the significant other. Psychosocial rehabilitation was measured in this study by tfle :following SIP criteria: Communication, alertness k 37 behavior, social interaction and emotional behavior. These variables will again be influenced by the other dimensions of rehabilitation as well as the perceived satisfaction held by the client and their significant other. As with all the variables mentioned the SIP will provide only the dysfunction in terms of specific behaviors not the underlying etiology of them. In order to provide a potential linkage between perceived dysfunction and etiology, Kings' (1981) theory of interacting systems was utilized in developing a conceptual framework. The final two concepts to be explored and included in the conceptual framework are satisfaction and perception. Perception As A Key Variable The concept of perception has been alluded to throughout the discussion of rehabilitation. In this study King's (1981) definition of perception, each human being's representation of reality, was used. Perception is an awareness of persons, objects, and events in relation to how one perceives self, body image, time, and space. In other words, perception gives meaning to one's experiences, represents one's image of reality, and influences one's behavior. Although humans share similar experiences, what they select to enter their into perceptual milieu is different. Their perceptions may be distorted by emotional states, an altered nervous system, illness, drugs, alcohol, sensory stimulation/overload/deprivation, use of defense mechanisms, and personality factors. King (1981) 38 identifies the following elements involved in perception: 1. transport of energy from the environment organized by information; 2. transformation of energy; 3. processing of information; 4. storing of information; and 5. export of information in overt behaviors. These elements influence the behavior of individuals and ultimately influence all human interactions. This concept was the common thread woven throughout this study. The client's capabilities are directly influenced by how he/she views him/herself in relation to how others view him or her. Satisfaction Considerable attention has been directed at determining the impact of ESRD on the client and significant other. This impact has been approached through objective and subjective measurements of the client's present quality of life (Laborde and Powers, 1980). Objective indicators included material possessions that added to the enjoyment of life as well as various social indicators i.e. educational achievement, occupation, income, etc. The problems inherent in these indicators is the lack of universal value and the fact that quality of life is more of a subjective evaluation. Campbell, Converse, and Rodgers (1976) point out that research related to assessing the quality of life has shifted from 39 variables related to possessions to concerns that are essentially psychological. Satisfaction has been identified as an appropriate measure to capture the sense of well being which goes beyond the need for material goods. Based on this fact satisfaction has received recognition as the most apt indicator for quality of life (Cantril, 1965, Campbell et al, 1976). Satisfaction is defined by Campbell et al (1976) as "the perceived discrepancy between aspiration and achievement, ranging from the perception of fulfillment to that of deprivation" (p. 8). This definition implies a judgmental or cognitive experience which is associated with affective content i.e. disappointment, frustration, success or resignation. Satisfaction is dependent upon the perception of a particular attribute or domain and the standard against which an individual judges that attribute. 'The standard of comparison may derive from any or all of the following bases of evaluation: Aspiration levels, expectation levels, equity levels, reference group levels, personal needs, and personal values (Campbell et al, 1976). The concept of satisfaction has been implicated in the rehabilitation process. The sick role may be perpetuated by the amount of satisfaction obtained by the client from their support network. As previously described, the sick role offers a degree of comfort and security in the relinquishment of usual responsibilities, several authors 40 note the secondary gains obtained as a factor impeding rehabilitation (Evans, Garrison, Manninen & Hart, 1982; Landsman, 1979; De-Nour & Czaczkes, 1975). The benefits of being sick may outweigh the benefits derived from rehabilitation, serving to compound the problems facing the client and family. Finally, Evans (1982) suggests that the degree of life satisfaction may be readjusted by the client. The ESRD Client may revise his/her life expectations and subsequently come to expect less. While this may serve to benefit some by feeling better off then they actually are, it may also be detrimental in assisting the clients in actualizing their rehabilitation potential. One can easily see the complexity involved in determining a person's level of satisfaction. Yet, it is this complexity which will provide direction to nursing interventions; since human behavior and intentions can be channeled toward maximizing satisfaction. In addition, the level of perceived satisfaction will ultimately impact the motivation level of client's thereby effecting rehabilitation (Anger & Anger, 1974). Nursing Theoretical Framework The nursing theoretical framework utilized in this study was King's (1981) theory of dynamic interacting systems. The basic concepts in her theory will be examined and related to the issue of rehabilitation. Specific attention will be on the interrelationship between the ¥___‘ 7 41 following triad: Client, his/her significant other, and a member of the health care team-—the nurse. Nursing as defined by King (1981) is the "process of action, reaction, and interaction whereby nurse and client share information about their perceptions in the nursing situation" (p. 2). Through this process the nurse and client mutually develop goals and explore various options to facilitate the client in maximizing health behaviors and/or restoring health. The nurse-client relationship is derived through the nursing process with the availability of options not limited to what the nurse can directly provide. Rather, the interventions are found in the client's social group as well as other professional disciplines. Therefore, the nurse's responsibility goes beyond the provision of direct care, and expands to the mobilization of all potential health resources to facilitate goal attainment. This concept of nursing implies a relationship between the individuals, each an equal party who brings to the relationship a unique self. Man, the recipient of nursing care, is an open system capable of reacting with other human beings and having the ability to feel, perceive, think, make decisions, choose alternatives, and set goals (King, 1981). The environment within which man interacts is both internal and external. The internal environment consists of organ systems, cells, hormones, and inner thought processes all in unique interaction. The external environment consists of all 42 things that influence the person from the outside (King, 1981). Both environments are essential for man to function at his optimal level, and define for him, his self-concept. Environments can be further delineated into three distinct yet "fluid" systems: Personal, interpersonal, and social. Man as an open system comprises one type of system in the environment-—a personal system. Through interacting with others, man is also part of an interpersonal system and, on a larger scale, is part of a social system which contains groups with special interests that make up communities and societies. There is a constant exchange occurring between these systems, which is influenced by individually held perceptions. These exchanges determine the behavior of human beings and ultimately lead to transactions. Figure 1 depicts the interrelationships of these three systems previously described. Transactions, the goal of nursing intervention, involve the exchange between individuals which lead to achievement of mutual goals. The outcome is a reduction of tension or stress in a situation and increased satisfaction (King, 1981). Transactions are dependent upon the quality of interactions between the individuals. Interactions involve communication between two individuals in which feelings and perceptions are shared. 43 Social Interpersonal Personal L— Figure . Interacting systems (King, 1981) The experience of any interaction is unique in that the time, place, circumstances and persons involved can never be repeated. Therefore, interactions are unidirectional, irreversible, dynamic and have a temporal-spatial dimension (King, 1981). Each party of the interaction brings a unique set of variables which influence the interaction: Personal knowledge, needs, goals, expectations, perception, past experiences, and judgments. Figure 2 depicts the core concepts within Kings' (1981) theory and their interrelationship. 44 Feedback I Perception Judgment Nurse + ( A Action |__. l v Action Patient \ J udg§ent Perception Reaction-).Interaction-+-Trans Feedback Figure 2. Process of human interactio The sequence begins with the perceptions held by each a particular situation or experience. Perceptions are individually judged in which the situation and the p involved are evaluated. This process leads to act both mental and physical. The outcome of this proces reactions whereby each individual reacts to the ot perceptions. These four components of the model ar readily observable. The process of humans' intera becomes apparent at the point of interaction in K (1981) model. The entire process has a feedback system t< perceptual level. Ultimately, transactions st influence the perceptions of each individual towa degree. of congruency. The following theorei propositions are offered by King (1981). 1. If perceptual accuracy is present in nurse-c 45 interactions, transactions will occur. 2. If nurse and client make transactions, goals will be attained. 3. If goals are attained, satisfactions will occur. 4. If goals are attained, effective nursing care will occur. 5. If transactions are made in nurse-client interactions, growth and development will be enhanced. 6. If role expectations and role performance as perceived by nurse and client are congruent, transactions will occur. 7. If role conflict is experienced by nurse or client or both, stress in nurse-client interactions will occur. 8. If nurses with special knowledge and skills communicate appropriate information to clients, mutual goal setting and goal attainment will occur. Although nursing is actively involved within each system of the client, their interpersonal system was the focus of this study. The interpersonal system, as previously described, is the interaction of two or more individuals. The process of interactions within an interpersonal system represents a sequence of verbal and nonverbal behaviors that are goal-directed (King, 1981). In this study the very beginning of the interactional process—~perceptions, was investigated. The questions under study-~are there perceptual differences both in the area of dysfunction and subsequent satisfaction between the 46 dyad regarding the client's current rehabilitation-—lends easily to King's (1981) theory. The model in Figure 3 is intended to depict the concepts within this study as applied to Kings' (1981) theoretical framework. Each member of the dyad will be influenced by several moderating variables extrapolated from the current literature. The client's perceptions will be influenced by: the number of months/years diagnosed with ESRD and on dialysis, additional comorbidity factors, age and employment status. The time frame since diagnosis and time interval of dialysis have been linked to various adaptation phases of the client (Levy, 1979.) De—Nour, (1981) note that clients experience the losses associated with chronic illness in a cyclical pattern. Certainly, the number of additional chronic illnesses, will impact the client's rehabilitative outcome. Several authors have clearly noted that such comorbidity factors must be considered as an intervening variable to the clients adaptation (Lundin & Lundin 1983; Evans, 1982; Kutner, 1980). Clients who rarely feel well or are overwhelmed with physical problems will unlikely have energy for rehabilitation. The final two moderating variables influencing the client's perceptions are age and employment. Both of these factors effect the client's self-image. Older clients may have less difficulty accepting the disability and the alterations in their life trajectory (Stegman, Duncan, 47 Pohren, & Sandstrom 1985). For the most part, they may view losses associated with chronic illness with less disruption in their life goals. Although Matthews (1980) notes that older adults may have more difficulty with adaptation due to additional health problems. Employment status has also been linked throughout the literature as a key variable in the client's self-image. Remaining active in the work world may reduce the client's perceived losses. Unfortunately, employment may also expose the client to numerous mixed messages and expectations (Falvo et al, 1982). The variables moderating the client's significant other are listed on Figure 3. These may influence their perceptions of the client's present abilities and ultimately their satisfaction with those abilities. Certainly, if the significant other is having to deal with personal health problems, little energy will be available to support the client. Additionally, the number and type of caretaking roles assumed by the significant other will influence the amount of perceived disruption to usual family routines. Round and Israel (1985) couple these variables with the age and employment status of the significant other compounding the overwhelming nature of ESRD. Ultimately, the significant other may respond by perpetuating the dysfunction or minimizing the client's physical limitations. Chronic hemodialysis client. Moderating variables: Length of time on dialysis. Length of kidney disease. Comorbidity factors. Age. Employment. l L——‘—. Client's identified significant other: Moderating variables: Own health status No. of activities performed for the client. Age. Employment. Figure 3. ‘48 f FEEDBACK Perception of: Current rehabilitation status a satisfaction of current status. i lJudgments l Evaluation of options to increase satisfaction. i l l Action [ Decision to alter expectations of self. REACTIONS -—'* between Communication . , dyad. of feelings and’experiences. Action Identification of mutual goals. Decision to alter expectations of client. i Judgments Evaluation of Options to increase satisfaction. [Perception] Clients current rehabilitation status 8 own satisfaction with client's rehabilitation. L FEEDBACK Application of King's Theory to the study concepts INTERACTIONS ———-c- TRANS Cong for negot barga 49 These variables in conjunction with the feedback system will impact the individual perceptions of the client and the significant other. The more harmonious the perceptions within the dyad, subsequent interactions between them will not require as much energy for goal attainment. In this case the feedback from transactions will ultimately increase satisfaction and strengthen the relationship between the client and the significant other. The transactions which do occur may not necessarily foster optimal rehabilitation. The goal may be to merely increase satisfaction despite a high degree of dysfunction. In this particular example, speculation might exist as to the length of time a dyad will be satisfied with a low level of rehabilitation, as the condition prevails. The dyad may find a status quo existence uncomfortable in our ever changing world. In Chapter six, nursing intervention will be offered to assist the dyad in growth producing transactions. The outcome of incongruent perceptions is depicted in Figure 4. Several concepts are found in figure 4. First is the notable absence of transactions. This is not meant to imply that any amount of incongruence will completely disrupt the dyad's ability for transactions. Rather, when the dyad is unable to identify mutual goals, fostering their own percep- tual milieu despite differing opinions, the amount of stress perpetuated will be destructive. Furthermore, as the stress increases between the dyad so does the emotional and possibly physical distance. Ultimately, the dyadic relationship becomes strained leaving the needs of each member unfilled. 50 Chronic Hemodialysis —> Perceptions ‘— Client FEEDBACK Expectations differ, unable to negotiate, stress results with Judgments perceived loss of support. Actions . L47 {-\_/-\_/-a_/-\_/—\_V~\_r-\.r~c,r-, I: Distance Reaction —> Interaction increases .11. between dyad. l CWNVW Actions Judgments FEEDBACK Differing expectations result- ? ing in stress with perceived Identified increase in threat to self. Significant —> Perceptions k Other Figure 4. Outcome of Incongruent perceptions 51 The work involved in a chronic illness for the dyad requires optimal communication. Corbin and Strauss (1984) conceptualize the management of a chronic illness as a "trajectory," due to its movement over several phases. The illness is apt to progress in a zigzag fashion, with ups and downs interspersed with stable periods. Each phase requires various types of work to be performed in its management: Symptom control and monitoring, preventing and handling crises, carrying on regimens, preventing or living with social isolation, modifying routines, maintaining a self-concept, dealing with role changes, handling physical discomfort, maintaining hope, and feeling in control. The client and his/her significant other design a plan to manage one or more of the trajectory movements. The ability to respond is directly related to the dyad's ability to coordinate these tasks and the degree and quality of their outside social support system. Problems with coordination may occur when each have a different trajectory projection and scheme. Here the significant other and the client have different expectations and management plans for the chronic illness. In addition, lack of available outside support, failure to take responsibility--either individually or as a couple--for the organization of the plan, and/or the couple's overriding stress in redesigning their hopes and dreams for the future can impede coordination of the tasks facing the dyad. Intrinsic within this management plan is congruency 52 and transactions. First and foremost, the dyad must be congruent on how the chronic illness impacts the client's physical and psychological health. In Chapter six the nursing component of Kings (1981) model will be added. Nursing concerns will be focused on promoting optimal interactions and transactions within the ESRD dyad for rehabilitation. Intrinsic in this concern is a care issue presently in the forefront of shaping ESRD federal policies: What constitutes optimal rehabilitation? Although the final answer to this question is not imminent, nursing research should add to the body of knowledge in formulating the definition. Nurses have been identified as primary providers of care for dialysis clients. They are the professionals who administer dialysis therapy and assist clients with the treatment process on a day to day basis. Logically, these professionals have considerable influence over the client and should be involved in shaping federal policies that address rehabilitation. Summary Chapter two provides the reader with the empirical nature of the concepts within this study. King's (1981), nursing theory was utilized for organization of the concepts into a unifying framework. The following review of the recent ESRD research in Chapter 3, will add supporting evidence to the framework's validity for this study. CHAPTER III REVIEW OF LITERATURE Introduction The following review of literature will include recent research conducted in the area of rehabilitation within the ESRD population. Specific attention will be given to the concepts within the research questions. What is the degree of congruence between a hemodialysis client and his/her significant other regarding the client's present overall rehabilitation? What is the degree of perceived satisfaction regarding the client's rehabilitative status by both the client and his/her significant other? The discussion will be limited to the subjective measurement of rehabilitation, focusing on the perception of ESRD clients and their significant other. In addition, the Sickness Impact Profile will be presented with data to support its validity and reliability, as well as its usefulness in measuring rehabilitation status. The Resurgence of Rehabilitation Gutman, Stead and Robinson (1981) should be credited for their efforts in re-emphasizing the need for research in the area of rehabilitation within the ESRD population. 53 54 These researchers found a scarcity of recent data surrounding the physical and occupational rehabilitation of ESRD clients especially in relation to concurrent morbidity factors. They were concerned that federal polices would be formulated on data that did not reflect the current ESRD population. In lieu of this apparent void, Gutman et al (1981) conducted what they considered a preliminary investigation of ESRD clients and the influence of race, age, education, and diabetes on their performance status and morbidity. Gutman's et al (1981), non-random sample included 2,481 dialysis clients encompassing the range of modalities from 18 dialysis centers. The sample was equally divided between gender and race, with 12% of the total number diagnosed with diabetes mellitus and the average age of the entire sample being 50 years. Gutman et a1 (1979) employed the services of the individual centers' social workers to provide the research data. These research assistants used their individual and independent judgment in evaluating the physical activity of the clients via the Karnofsky Activity Scale, and a work/employment scale to determine present work status. Clients whose Karnofsky scores ranged between 80 and 100 (able to carry on normal activity at least part of the time) were deemed to have undergone successful physical rehabilitation. Gutman et al (1981) found the physical activity of nondiabetics considerably greater than that of diabetics 55 (P < .001). Only 20% of the nondiabetics were judged to be unable to care for themselves completely (Karnofsky score 1-69), in contrast to over 50% of the diabetic clients belonging to this category. The reduced physical activity of the diabetic group was equally reflected in their employment status. Only 18% of the diabetic men as compared to 34% of the nondiabetic men worked outside the home. There was less employment outside the home among diabetic women (6 vs 16 percent, P< 0.001) and a smaller percentage of diabetic women engaged in full-time housework. (18 vs 32 percent P< 0.001). Gutman et al (1981), found significant differences between black and white clients in their employment status and educational achievement. Around 36 percent of the 740 white males were employed in contrast to the 27 percent of the 541 black males (P< 0.001). Only 11 percent of the black males had received an education beyond the high school level as compared to the 29 percent of the white males (P< 0.001). Clients who were diagnosed with diabetes were not included in the above analysis. Gutman et a1 (1981) also correlated the age of the clients to their physical activity. The results showed significant reduction in their ability to do more than self-care with increased age (P< 0.001). The data from this multicenter survey generated considerable interest among the medical and governmental sectors for several reasons. The apparent level of 56 debilitation was far greater than predicted and appeared pervasive throughout the population sampled. Gutman et a1 (1981) did caution the readers to interpret the findings in relation to the study's methodological weaknesses. First and foremost, the survey sample had a degree of sampling bias since random sampling was not utilized. Information was not gathered on the location of dialysis--home vs in-- center nor the mode of dialysis therapy hemodialysis vs peritoneal. The instruments were not evaluated for their degree of validation and the Karnofsky scale was noted for its weakness in the absence of rigorous observer training. One further weakness not noted by Gutman et al (1981), was the lack of information on the client's social status or psychosocial rehabilitation. Despite these limitations the results did point to the need for further evaluation of ESRD clients and their overall quality of life. The weaknesses noted within Gutman's et al (1981) study are not unique to the research conducted with ESRD. The problems inherent to the ESRD research include convenience samples, which are often small in size, lack of uniformity in research totals, the failure to obtain data from a variety of non renal populations for comparison and the apparent exclusion of the client's significant other in the research data. Unfortunately, not only is the client frequently the sole subject for data collection but is often the sole recipient of health care. This occurs despite the recognition by numerous authors of the 57 correlation of successful family integration to rehabilitation. (Diamond, 1979; Evans, 1982; Falvo et al. 1982; Friedrich, 1980; Hadge, 1983; Hatz & Powers, 1980; Hutchful, 1980). Recognition of the Client's Support System for Rehabilitation The lack of therapeutic integration of the ESRD client's support system by nursing was an interesting side finding in a study conducted by Matthews (1980). The study included a non randomized sample of 347 clients from six teaching hospitals in Metropolitan Toronto and represented each of the five treatment options: In-Center Hemodialysis N = 76, Home Hemodialysis N = 53, Center Peritonal dialysis N = 19, Home Peritonal dialysis N = 51, and Transplant N = 148. The patients ranged in age from 16—70 years with a median age of 45 years. The subjects were found to reflect the general trends in renal treatment with males outnumbering females 2:1, and over 70% of the subjects were married. The goal of the research project was to measure the association of rehabilitation outcome to the hospital environment, patient endowments, demands of the illness and treatment, and formal and informal supports. Matthews (1980) incorporated demographic data, a health team assessment, and a client and family member questionnaire. The health team was composed of all renal unit personnel who had contact with the client and family. Not surprisingly the renal nurses constituted over half of the 58 identified personnel followed by physicians. The health team was asked to, evaluate the client's actual and expected level of functioning; rate the client's personality attitudes; estimate the stress factors affecting the client and identify the type of support provided by the health team members, family, and friends. The client and family questionnaire was geared to information regarding general health and well-being, dialysis, employment, relationships, home activity, social activity, decision-making, and use of voluntary services. Information on reliability or validity was not provided by Matthews (1980) on any of the survey instruments utilized. A maximum of seven health team members per institution completed a total of 1,174 assessments. A most disturbing finding was the lack of staff contact with the patient's families as well as limited knowledge of the family psychosocial situation. Only about 20% of the health team members reported direct contact with the families. Matthews (1980) indicates from this finding that the patient appears to be the primary focus of health care, rather than the family. Unfortunately, the study statistics were not reported separately for those patients whose family had contact with a health team member. Nor are the statistics clear in the reporting as to which family member was asked to participate in the study, thereby leading the reader to assume that spouses were the most frequently identified family member since marital 59 status was a common variable. Although Matthews (1980) failed to include some pertinent information for interpretation, the results presented in the perceptions of stress ranked by patients, staff and family were interesting. Discrepancies in ranking order in the perceived stressors were noted between the three groups. The clients in Matthews (1980) study ranked weakness, having to reduce work, and fluctuating health as the top three stressors, while staff and families chose fluctuating health, weakness, and threat of death. The threat of death was ranked number 13 by Clients. Matthews (1980) concludes that the findings tend to substantiate the suggestions for treatment improvement identified by the patients and their families. The top four suggestions were: Improved treatment circumstances 44%, more information on the clients illness 32.3%, more compassion from the staff 28.0%, and support for spouse and family 26.8%. Matthews (1980) study certainly brought forth the exclusion of family members but also shed light on the subsequent problems from poor communication incongruency. The remainder of Matthews (1980) study will be presented elsewhere in this chapter. Hastings (1982) offers further evidence of the need to include the client's significant other in the rehabilitation process. She emphasizes the need to identify perceptions held by both the client and their 60 significant other as a critical factor in promoting rehabilitation. Hastings (1982) non—randomized, experimental study included subjects from each treatment modality (CAPD, home hemodialysis and in-center hemodialysis). Together with their significant other, they were randomly assigned to either one of two treatment groups or a control group. A total of 19 couples participated in the program thereby allotting for 6-7 couples in each group. The median age of the participants was 49 with clients reporting varying lengths of time since diagnosis. Hastings (1982) does not report further demographic data on the sample. Therefore, the proportion of subjects from each modality are not readily available. The overall goal of Hastings (1982) study was to provide an environment conducive to open communication between partners and to teach clients and their significant other new communication techniques. Ultimately, Hastings (1982) aimed to facilitate the couple's adaptation to dialysis. The subjects assigned to the treatment groups met each week for a period of six weeks with the researcher as the group facilitator. The evaluation of the support program was based on a pre-test, post-test control group design. Data was obtained from five different instruments each intended to measure a component of the psychological, social and emotional responses of patients and their partners. The study instruments and their respective 61 reliability follows: - Demographic survey. - IPAT Anxiety Scale Questionnaire: This scale is composed of 40 items to measure the trait anxiety. Test-retest reliability of .82 was obtained for the total score and repeated internal consistency scores range from .78 to .92. - Profile of Mood States: This survey is a self— report rating scale which includes 65 items to assess the impact of renal disease and it's treatment on the patient's and their partners mood state. Internal consistency was reported at .90 and test-retest reliability estimates for a period with a median time of 20 days range from .65 for vigor to .74 for depression. - The Sickness Impact Profile: Behavioral impact of renal disease and its treatment was evaluated by the administration of the entire SIP. This instrument has established reliability and validity and is discussed in detail later in this chapter. - Relationship Inventory: This inventory was used to measure the perceived quality of the partner's relationship. Measures of empathic understanding congruence, level of regard, and unconditionality of regard in a relationship are obtained. Hastings (1982) does not report the reliability or validity estimates for this inventory. These instruments were administered initially, at the end of six weeks, and twelve weeks to the treatment and control groups. All but the Sickness Impact profile was administered to both the clients and his/her significant others. Data analysis was performed in several stages. First, one-way analysis of variance was performed on demographic measures, the IPAT Anxiety Scale, and the other pretest measures to determine whether significant differences were present between the treatment and control 62 groups prior to the program. Next, multivariable profile analyses were performed between pretest subscales of the Profile of Mood States, the Sickness Impact Profile, and the Relationship Inventory. These analyses were used to assess for significant differences between groups prior to the program. Correlated t-tests and a 3 x 3 analysis of variance design with repeated measures at significant level of P < .05 were carried out on the pre and post data. Hastings (1982) found significant improvements for the two treatment groups on the Tension, Depression, Vigor, Fatigue, and Confusion subscales of the Profile of Mood States. Treatment group one which was first to receive the program showed significant improvement on the Overall, the Emotional Behavior, the Alertness Behavior, the Recreation and Pastimes, the Physical and the Psychosocial subscales of the Sickness Impact Profile. The treatment groups improved on all four subscales of the Relationship Inventory, while the control group improved only on the Unconditionality and Congruence subscales. Results of this study were noted by Hasting (1982) to indicate problems with the adjustment of the couple and/or family to dialysis. This was demonstrated by low Empathy and Unconditionality scores on the Relationship Inventory and low Communication scores on the Sickness Impact Profile. Hastings (1982) surmises that clients and their partners may have difficulty interacting, which may result in marital discord and subsequent family functioning. 63 Although the findings of Hastings (1982) cannot be generalized to the entire population, they do corroborate with the views of Dr. Chyatte (1979), a renal client and professor of rehabilitation medicine. He states that ESRD is a family disease and must be treated as such. The issue must not be client rehabilitation but family rehabilitation. The research studies thus far reviewed have provided substantiating evidence of the need for client data. The present data reflects a debilitated population whose significant others have not been incorporated into the treatment plan. Further, the lack of communication between the dyads is reflected by incongruent perceptions of the stressors between the dyads. The most striking finding was that of Hastings (1982) who noted an increase in rehabilitation as a result of family vs client interventions. The dimensions of rehabilitation--physical, gainful activity, and psychosocial--will now be reviewed with respect to both the client and their significant other." For ease of presentation, both physical and gainful activity will be discussed together. Separation of these dimensions is difficult due to their intricate relationship. 64 Physical Dimension of Rehabilitation: Physical/Gainful Activity Measurements of physical rehabilitation have been sought both objectively and subjectively in order to correlate a relationship between physical status and resumption of life activities. A number of interesting approaches have been utilized, some which completely exclude the client in the actual data collection. Health Team Assessment of Rehabilitation One such study was conducted by Taylor (1978) who attempted to compare rehabilitation between hemodialysis clients and transplant recipients at one regional center. She defined rehabilitation to include a broad range of activities (i.e., driving a car, socializing, gardening, etc.) in addition to the more traditional activities such as employment. A sample of 92 hemodialysis clients and 85 transplant clients were assessed by the center's physician. A five-level scale for rehabilitation was developed, with level one indicating the patient died during the study period to level five indicating high functioning at essentially pre-illness level. She found that 53.3% of the hemodialysis population functioned at level 4 or 5, compared to 21.9% of the cadaver transplant group and 57.1% of the living donor transplant group. Mean level of rehabilitation for the hemodialysis patients was 3.54, for living donor transplant recipients 3.57 and cadaver transplant recipients 2.31. 65 Unfortunately, the data obtained by Taylor (1978) was subject to biases, absence of instrument validation, and lack of reported data on the demographics of her sample. She did find a high proportion of dialysis clients active, but offered no explanation for the 47% who were judged to be performing little if any activity. Utilization of the health team in measuring physical and psychological rehabilitation is one of the most common methods found within the literature. Matthews (1980) study, which was described earlier, incorporated both the health team, the client and a family member in her study on rehabilitation outcome. Recalling that she utilized health team assessments and client/family questionnaires, data was collected on 347 client representing each treatment modality. Of the health team assessments in Matthews (1980) study 71% of the clients were found to function at the expected rated expected level of functioning as similar, 20% as better than expected, and only 4% as less than expected. However, only 35% of the clients were rated as functioning at full pace or having a normal life; these were predominately transplant clients. Dialysis clients, functioned at less-than-normal pace; and a few were living very restricted lives. Factors given by the staff that adversely affected functioning included the entire range of medical, psychological, educational, employment and social factors. 66 Matthews (1980) found income to correlate inversely with rehabilitation outcome. Poorer patients (less than $10,000/year) were more likely to have experienced changes in daily life, engaged in fewer household tasks and socialized less. Other variables affecting rehabilitation were age, marital status, treatment modality and length of treatment. In general older patients were found to have poorer adjustment due to multiple health problems and difficulty in role adjustment. This finding is in contrast to that of other researchers who contend that older patients often report higher quality of life. (Stegman, Duncan, Pohren, Sandstrom. 1985) The married dialysis patient in Matthews (1980) study reported close support from family and friends and continued community involvements. Spouses indicated supportive attitudes but a significant number (figures not provided) commented on the need for more emotional help. Interestingly, Matthews(1980) found that length of treatment also correlated with rehabilitation. Clients who had been under treatment for a longer time registered a greater degree of rehabilitation. Matthews(1980) infers from this that patients can incorporate ESRD and it's demanding treatment into their lives. Employment statistics from Matthews (1980) study included: 66% of the clients had paid jobs outside the home, attended school, or were working as housewives. Most of the transplant clients worked full time, while dialysis 67 clients worked part time (percentages not provided). Sixty percent of the housewives on hemodialysis, perceived a reduction in time spent in accomplishing their tasks. A significant relationship (P< .0001) between work and treatment modality was also found. Transplant and home dialysis clients were more likely to work inside and outside the home versus in-center and peritoneal dialysis clients. The results of Matthews (1980) study are somewhat difficult to interpret. The author fails to define level of functioning and makes no attempt to correlate staff's perception to that of the client and family member. Yet the incorporation of client and family perceptions when determining rehabilitation status opens the field to a wide range of possibilities. Studies in which the health team solely evaluates the client's status are fraught with problems. These problems include: limited contact with the family, personal values of work, perceived difficulties of a chronic illness, and personal definition of rehabilitation. Certainly the team's evaluation is a necessary component of rehabilitation, but it must be integrated with other measurements such as the perceptions of the client and their significant others. Correlation of Objective to Subjective Indicators of Physical Rehabilitation A study coordinated by Kutner (1980) incorporated both objective and subjective indicators of physical 68 rehabilitation. A sample of 150 ESRD clients from nine dialysis facilities in the Atlanta metropolitan area were evaluated. The majority of these clients, (91%) were undergoing maintenance dialysis; the remaining clients (9%) had a functional transplant. Subjects ranged in age from 18 to 79 years. with a mean age of 41 years. For each client, the data collected encompassed the client's perception of their current medical, psychosocial, vocational, and family situation as well as a number of objective physical measurements: muscle strength, grip and pinch strength, range of motion, time mobility, and distal sensation, recent blood work recorded and cognitive motor skills. Several psychological measures were also included and will be discussed later in this chapter. In addition the client's satisfaction with various dimensions of his/her life was rated by both the client and a significant other. Kutner (1980) does not provide a detailed description of the study instruments. Report of her findings will be limited to the dialysis population (N = 136). Kutner (1980) found no differences between long-term clients (> 4 years) and short-term clients (< 4 years) with respect to laboratory values. The average values were within the desired range, indicating dialysis therapy was effective in controlling blood chemistries. Average hematocrits were well below the normal range for both long- term and short-term clients. In terms of the client's 69 subjective complaints, long-term clients were significantly less likely [X2 (3) = 9.18, P = .03] than short-term clients to complain of fatigue while equal percentages of the clients complained of severe fatigue. Long-term clients were also significantly less likely [X2 (3) = 9.21, P = .03] than short-term clients to complain of dizziness. Kutner (1980) reports the average number of hours spent per day in sleep and sedentary leisure versus standing/walking/physical activity did not differ significantly between the clients. Men averaged 12.46 down time hours and 3.94 up time hours, while women averaged 11.95 down time hours and 3.96 up time hours. Among both long-term and short-term employed clients, the percentage of total job hours which was sedentary was greater for women (57%) than for men (46%). Kutner (1980) suggests that both men and women clients need jobs which are at least partially sedentary. No significant correlations between length of dialysis and the objective measures of physical status were found by Kutner (1980). The Differential Emotion Scale (DES), a graphic type scale ranging from one to five, one being slightly experienced to five being very strongly experienced, was completed by the clients. Kutner (1980) found the subjects had moderate to considerable feelings of physical well- being (2 = 3.2). In addition little loss of sexual interest over the previous week (2 = 1.7) was noted. The total group perceived fatigue as slightly experienced 70 (x = 2.2) and a positive state of alertness (x = 3.5). Kutner (1980) utilized the Family Environment Scale (FES) to measure the client's perception of the degree to which his/her family fosters personal growth. The mean standard score for the FES is 50. The participants viewed their families as about average on the degree of independence fostered by the family (a = 51.9, S.D. = 12.2) and encouragement to achieve or compete (s = 53.0, S.D. = 8.8). Low ratings were given to active-recreational orientation (2 = 39.2, S.D. = 13.8), and conflict (2 = 36.5, S.D. 10.2). Clients viewed their families as slightly higher than average in their emphasis on order (2 = 56.6, S.D. =10.2) and average in the degree of hierarchical family organization and rigidity of family rules (2 = 49.8, S.D. = 9.8). There were no significant difference between the long and short-term dialysis patients. The Social Dysfunction Rating Scale which is used to assess dysfunctional aspects of adjustment, especially personal satisfaction, self-fulfillment, and social role performance, was used by Kutner (1980). She found the clients to perceive themselves as very mildly dysfunctional. The only areas of mild dysfunction were self-health concern, need for more friends, social contacts, need for more leisure, self-enhancing and satisfying activities, and lack of participation in community affairs. Overall, there were no significant differences between the long and short- 71 term clients. Kutner (1980) found significant correlations between the physical indicators of rehabilitation and the client's current employment or active student roles. Among both long—term and short-term clients, the likelihood of employment or student status was significantly less among clients who complained of severe fatigue (p = .0016 for long-term clients, p = .007 for short—term clients, Fischer's exact test). Clients who complained of moderate fatigue were almost as likely to be employed as clients who had mild fatigue or no fatigue complaint. The majority of clients who had mild or no fatigue were not active in either a job or student role. Homemaking tasks, feeding, dressing, and personal hygiene presented no problems to this population. The final component of Kutner's (1980) study involved clients' rating of their current satisfaction with their life as compared to their satisfaction before developing End Stage Renal Disease. Clients marked a point on a 100 mm line to describe their feelings, with 100 indicating the "same or more satisfying" and 0 indicating "not at all satisfying". Overall, the ratings for long-term and short- term dialysis clients on 13 dimensions were above average. The areas which ranged between 50 and 60 for long-term clients included ability to travel, medical situation, sexual life, and working or homemaking situation. Short- term clients scored below average on sexual life (46.5) and 72 between 50 and 60 on ability to travel, medical situation, working or homemaking, and ability to get around. Kutner (1980) found fewer than 40% of the men dialysis clients and 20% of the women dialysis clients evaluated in a job or active student status. She attributed the lack of activity, despite the results of the cognitive—motor tests, to the anticipated loss of Social Security benefits if employed. Also, personal satisfaction incentives must equal or exceed the benefits which clients receive as unemployed individuals. Despite the completeness noted in Kutner's (1980) study several weaknesses in both methodology and the subsequent reporting can be found. Little emphasis was placed on the client's significant other especially in regards to their perceptions of the client's functioning. This aspect would have enhanced the data of the FES, with the ability to make correlations between the client's perception and that of their significant other. Additionally, Kutner (1980) does not report the scale range of the FES nor are inferences made regarding the average scale values and the client's activity level. Certainly, one might surmise that individuals with chronic illness who perceive a higher degree of fostered independence by their family may be more independent. Also, one might question the low degree of conflict perceived by the client within their family. Is this due to suppression of anger or a comfortable degree of mutuality within the family? 73 Subjective Assessment of Physical Rehabilitation Numerous studies have been conducted with the ESRD population which address subjective appraisal of health by the client and, to a lesser degree, the spouse or significant other. Friedrich (1980) surveyed 97 clients focusing on each client's perception of various physical and psychosocial stressors. Using various sites within the state of Iowa she found a wide variation in the demographic and treatment variables. The age range was 19-82 years with a mean of 48 years. The months on dialysis varied from 2-91 months with a mean of 20.3 months, males outnumbered females by 2:1 ratio and the majority were married (N = 75) and unemployed (N = 72). Friedrich designed a questionnaire to identify the physical stressors perceived during dialysis, between treatments and those psychosocial in nature. Subjects were asked to rate the level of distress created by each problem listed on a 5 point Likert Scale. The scale was secred O for no distress to 5 indicating extreme distress. Reliability, using test-retest, for the instrument was considered within acceptable limits. Content validity was established by three health care experts in hemodialysis. Friedrich (1980) found that over 50% perceived fatigue and weakness to cause moderate to extreme distress to the client both during and between dialysis treatments. A total of 44.6% reported moderate to extreme distress in sexual changes, and 42.7% cited distress in sleeping at 74 night. A noted difference in the perceived distress was found on the variables of employment months on dialysis, frequency of dialysis, and gender. Individuals who were unemployed reported significantly more distress with the problems of fatigue (P< .004), difficulty in sleeping (P< .019) and pain in bones and joints (P< .058). As weekly frequency of dialysis decreased the distress associated with nausea (P< .027) and bleeding increased (P< .035). Increasing months on dialysis was associated with more distress with sleeping (P< .054), hypertension (P< .007) and bleeding (P< .029). Females had more difficulty with excess weight gain (P< .052) and dizziness (P< .009). The remainder of Friedrich's (1980) study will be presented later in this chapter. Fatigue is the most frequently cited physiological factor affecting the client's perception of rehabilitation throughout the literature critiqued. Several authors have attempted to provide an explanation for this, and have listed the chronic anemic state as well as the psychosocial stressors as contributing factors (Kutner, 1983; Friedrich, 1980; Baldree, et a1, 1982; and Hastings, 1982). Indeed, a feeling of exhaustion will impede participation in activities inside or outside-the-home. A study conducted by Ferrans and Powers (1985), in which variables influencing the employment potential of dialysis clients, supports this association. In their study of 20 employed and 20 unemployed dialysis clients, 75 all deemed eligible for employment, no significant differences were found in job satisfaction or job importance before starting dialysis. Using a self-anchoring lO-point scale [10 represents the best possible health, and 1 the worst], a subjective health appraisal was then measured. Subjects were also asked to identify physical impediments to current job performance or to returning to work. The mean subjective health ratings for the employed (5.13, S.D. = 2.37) and for the unemployed (5.28, S.D. = 2.56) were not significantly different. Of those subjects who were employed, 60% stated that fatigue interfered with job performance, 25% reported difficulty concentrating, and 5% stated that fistula location was a problem. Of those unemployed, 75% stated fatigue interfered with their ability to return to work, 15% reported difficulty concentrating, and 15% stated that fistula location was a problem. A total of 30% reported no symptoms or other problems. Employment decision variables for the employed group in Ferrans et a1 (1985) sample ranged from providing financial assistance to the desire to keep active. Self- esteem and enjoyment of work were cited by 20% of the sample. Those unemployed, 65% stated that poor health was the major reason for not returning to work. This was an interesting finding as the two groups did not rate their subjective health appraisal differently. Unfortunately, Ferrans and Powers (1985) did not include a family 76 appraisal which may have shed light on their findings; nor did they account for other types of gainful activity. The authors attributed the interference of poor health in the unemployed group to: possible perception of symptoms as more severe than the employed group fear of exacerbating the illness with employment, previously held positions may indeed be too strenuous to return to, and job discrimination among employers (Ferrans & Powers, 1985). Stated earlier, employment although the easiest measurement of gainful activity is not the most appropriate indicator of rehabilitation. Rather, behaviors which encompass a wide spectrum of day-to-day activities must be the basis for such measurement. Bruinsma (1982) incorporated such a broad range of activities and the associated impact of the illness as perceived by the clients in his study. Bruinsma (1982) utilized the Sickness Impact Profile on 30 clients receiving outpatient hemodialysis. The profile was administered in two phases a year apart to evaluate the rehabilitation within a select population over time and to evaluate the usefulness of the SIP in the dialysis population. The sample demographics of his study included: 8 diabetics and 22 nondiabetics; 19 males and 11 females; with an age range of 10 to 70 years (mean age was 57.6). In Phase 1 analysis of Bruinsma's (1982) study the diabetics were found to be significantly (p < .04) more 77 dysfunctional than the nondiabetics in the categories of Body Care and Movement, Ambulation, Work, Eating, Emotional Behavior, Home Management, and Alertness Behavior. They were more dysfunctional in both the Psychosocial and Physical Dimension as well as the total SIP scores. In Phase 2 the diabetics had significantly more dysfunction than nondiabetics in the categories of Ambulation, Communication, Work, Recreation and Pastimes, the Physical Dimension, and the total SIP scores. Comparing the SIP results from the two phases, the diabetics did improve significantly in functioning in the categories of Sleep and Rest, Emotional Behavior, Body Care and Movement, and the total SIP score. The nondiabetics had an increase in over- all dysfunction in the same year. iBruinsma (1982) found the group to be mildly dysfunctional jJiiall areas of the SIP. Areas above 19% dysfunctional included the Total Psychosocial Dimension, Ambulation, Social Interaction, Communication, Alertness Behavior, and Sleep and Rest. The sample had a mean dysfunction score of 35% in Home Management, 25% in Recreation and Pastimes, and 55% in Work. Bruinsma (1982) concludes that the perceived impact of the illness as it affects day-to-day activities is a necessary assessment component for the health professional. Evans (1982) also recognized the need to evaluate client perceptions of the illness as it affects them. In his study of 859 ESRD clients, representing all treatment 78 modalities, several objective and subjective measures were obtained. The original intent of Evans (1982) was to rank treatment modalilty in terms of rehabilitation outcomes after controlling for case—mix variables i.e., age, race, sex, education, and number of comorbid conditions. Selected portions of Evans (1982) study will only be presented as they relate to the concepts of the research questions under study. Evans (1982) randomly selected 347 in-center hemodialysis clients and 287 home hemodialysis clients. The mean age for each group was 47 years for home clients and 51.9 years for in-center clients. Males outnumbered females in the home program, while equal percentages were found in-center. Caucasian (86.5%) was the predominate race in the home program, with near equal ratio's between races in the in-center clients. The comorbid conditions, identified by the clients' physician, included a broad range of additional medical diagnosis and complications of dialysis. The in-center clients had a mean of 1.55 comorbid conditions while home clients had a mean number of .98. The differences between groups was found to be significant (F = 24.6, P = .000). The Karnofsky index was used as an overall indicator of functional impairment, with the clients' physicians rating each client on the one to ten scale; one representing normal function and ten associated with a morbid condition. The home hemodialysis clients were 79 assessed as a significantly higher level of functioning (x = 2.56) than the in-center clients (x = 3.11, P = .05). This functional status was significantly correlated to the clients age, educational level and modality. Evans (1982) approached the clients employment status by asking for the respondents answer to "Are you p93 able to work for pay full-time, part-time, or not at all?" The home clients had a significantly higher (59%, P = .05) perception of their ability to work versus the in-center clients (37%). The length of time on dialysis did not correlate with the functional impairments or ability to work. Evans (1982) did not ask the clients if they were currently working which limits the usefulness of this indicator. The second phase of Evans' (1982) study was the collection of subjective data on Life satisfaction, well- being, and general affect. This data was then correlated to the objective information and the case-mix variables. The instruments used to obtain the subjective data included: Index of Well-Being, the Index of General Affect, and the Index of life satisfaction. The latter two scales had a response range of one to seven; one indicating very dissatisfied and seven extremely satisfied. Estimates of reliability and validity were not provided for these instruments. The home clients had a mean of 5.33 on the Index of General Affect and in-center clients had a mean score of 80 5.15. The mean Life Satisfaction score of the home clients was 5.19, and 5.11 for the in-center clients. The mean Well-Being score for the home clients was 11.12, in—center clients had a mean well-being score of 10.77. The subjective data did not correlate significantly with length of time on dialysis, number of comorbidity factors, or the objective quality of life. However, significant differences (P = .05) were noted between the subjective indexes and age, treatment modality, and education. For the most part clients who were younger had a higher educational level, and were on home dialysis had a higher subjective quality of life. Although, Evans (1982) incorporated numerous variables in his study, the lack of attention to the client's social network was obvious. In addition, the definition of work was limited to paid employment, eliminating the other types of gainful activity. Both of these variables may have helped to explain the disparity between the physical and psychosocial quality of life indicators. Summary of Research Studies Relating to Physical Dimension of Rehabilititation The seven research studies reviewed in this section have certainly added to the body of ESRD literature. For the most part, the portrayal of the dialysis population as severely debilitated was refuted. A number of common concerns were noted between studies which may ultimately affect the clients ability in maximizing their 81 rehabilitation outcome i.e. fatigue, treatment modality and age. There was no substantial data supporting a linear relationship between the client's physical and psychosocial quality of life. Further, the case-mix variables as described by Evans (1982) were not consistently found to impact the client's physical rehabilitation. In terms of employment status, vocational rehabilitation did not consistently correlate with physical limitations. The underlying assumptions made by Kutner (1980) and Ferrans et al (1985) are the employment impediments of time, need for sedentary positions and disability requirements. Also noted by several authors was the dissatisfaction in the amount of recreation and social activities presently engage in by the clients. Several common methodological weakness were also noted between the studies: the lack of a unifying definition of physical rehabilitation, the variety of approaches in collecting data about or from the client, the failure to include the client's significant other and the lack of conformity between the measuring instruments. The third component of rehabi1itation--psychosocial-- may be the key link for rehabilitation. Superimposed is the degree of satisfaction with the present level of functioningu lHafstrom and Schram (1984) state that, through analysis of perceived satisfaction between the couple, interventions can be geared to either increase the present level of functioning or assist the couple in adjust- ing their expectations, thereby reducing frustration levels. 82 Psychosocial Rehabilitation Numerous research endeavors have been undertaken to explore the psychosocial component of rehabilitation. One of the most difficult problems between the various health providers encountered is isolating the physical from the psychosocial component of rehabilitation. For the most part, these two components are indirectly woven and in many ways appear to be dependent upon each other. This fact was noted by Stegman et al (1985) in their recent study on the quality of life as perceived by hemodialysis patients. Relationship of Physical to Psychosocial Rehabilitation Stegman et al (1985) conducted a cross-sectional survey involving in-center hemodialysis patients, 18 years and older at four hospitals in the midwest. The purpose of the study was to measure the patient's perceived quality of life. A total of 41 clients were randomly selected after being stratified on the basis of age and sex. The sample included 23 women and 18 men, with a mean age of 57 years. Most (N = 25) were married, 15 were single or widowed and one was divorced. The work status of the 27 patients not retired included 14 homemakers, 7 who worked either full or part time and 6 who were unemployed. The mean length of time on dialysis of the sample was 3.3 years. Four instruments were used by Stegman et al (1985) to measure quality of life: The Self-Anchoring Striving Scale (SASS), the Additive Activity Profile Test (ADAPT), Educational Status Profile, and Demographics Survey. The 83 estimates of reliability and validity on these instruments were not provided by Stegman et al (1985). Stegman et al (1985) also collected objective data which have been noted in previous research studies to influence the clients perceived quality of life. Utilizing the SASS, 11-rung self—anchoring ladder, clients were asked to identify the best and worst life situation. After identifying their own end-points the clients were asked to place themselves on the ladder where they predicted they would be in five years. Finally, the clients were instructed to rate their quality of present and anticipated future health in the same way that quality of life was measured. The median score on the SASS was highest for present quality of life (7.0) and lowest for perceived current health status (5.0). The most frequent responses for both best possible life and health status was the absence of kidney disease. The worst possible life situation and the worst possible health state were most often identified as the loss of autonomy resulting in the subject becoming a burden to the family. Stegman et a1 (1985) reports a median score of 6 for the clients perception of their future quality of life. Their expectation of health in five years had a median score of 5.5. The mean scores for the ADAPT, the measure of physical activity, was 57.58 with a range of 18 to 104. Stegman et al (1985) reports that the ADAPT score was the most 84 important variable in determining the clients perceived satisfaction with their present life, and optimistic future expectations. Interestingly, older clients expressed having a higher quality of life and women were most optimistic about their future quality of life. Neither quality of life nor perceived health status were associated with the client's vocational status. Stegman et al (1985) summarizes her findings by noting the importance of obtaining subjective measurement for identifying quality of life versus objective indicators. Furthermore, the researchers state that physical activity should be continuously assessed and interventions geared to maintain or improve the dialysis patients current status. This variable was found to be an inherent and consistent component of the quality of life and perception of health among the dialysis clients sampled. The one weakness found within Stegman et al (1985) study is the failure to include the hemodialysis client's significant other. A common weakness noted in the majority of research conducted. The correlation of physical to psychosocial rehabilitation has been investigated by several researchers prior to Stegman et a1 (1985). The findings are not all as clearly correlated which only adds to the complex nature of rehabilitation. Diamond (1979) recognized the importance of physical functioning to psychosocial rehabilitation and the 85 potential influence of the client's social support system. She conducted a study within a private renal unit to examine the relationship among three sources of social support (family, spouse, and confidant) and adaptation to maintenance hemodialysis. Adaptation was measured in terms of morale and changes in social functioning. The physical status of the subject was held as a major control factor when examining the association between support and adaptation. Diamond's (1979) non-randomized sample included 36 chronic hemodialysis clients, fourteen of whom were female and 22 were male. The majority of clients (N = 27) were married, 5 were single and 4 were widowed, divorced or separated. The mean age was 46 years with a range of 22 to 77 years. The subjects were evenly distributed between home and in-center hemodialysis, with an average of 32 months on dialysis. The instruments utilized by Diamond included: A S-point Behavior Morale Scale (BMS), 3 sub- scales of the Sickness Impact Profile (SIP), (Household Management, Leisure and Recreation, and Social Interaction) the Family Environment Scale (FES), and a single question on the presence or absence of a confidant. Each of the instruments except for the confidant scale had acceptable reliability coefficients of above .80. The number of medical complications secondary to chronic renal failure was used as the measure of medical status. Examples of such problems are: low hematocrit, infections, fluid 86 overload, diarrhea/constipation, hypertension and osteoarthritis. Each medical problem was counted only once making this a measure of different medical complications. Diamond (1979) collected data over a 6-month period via patient interviews, mailed questionnaires, assessment of spouse support by the renal registered nurse and a review of the medical records. The mean score for the FES family cohesion scale was 7.0 and the family expressiveness scale was 5, out of a possible score range of 0-9. The amount of spouse support assessed by the renal nurses resulted in a group mean of 39, with a possible range of 12-50. The subjects had a mean adaption score of 58 on the BMS which has a range of 17-85. For each of these scales the higher values indicate a higher degree of the characteristic being measured. The mean SIP percentage scores on Household Management was 21, Leisure/Recreation was 25 and Social Interaction was 19. On these scales the higher the score the greater the percentage of change in social functioning. In terms of the number of medical complications the mean value was 4 for the entire sample. Diamond (1979) utilized the Pearson r to correlate the relationship between social support and adaptation measures. Each of the social support variables was significantly and positively associated with morale: (family cohesion r = .44, P< .01, family expressiveness r = .55 P< 01, confidant r = .31 P< .05). Family 87 cohesiveness and presence of a confidant had a significant negative correlation with changes in social functioning. Except for family cohesion and spouse support the other measures of social support and adaptation had a significant correlation to the patient's medical status. Greater expressiveness in the family, the presence of a confidant, and higher morale were associated with fewer medical problems (P< .01). On the other hand increased changes in social functioning were associated with more medical problems (r = .52, P< .01). Diamond (1979) summarizes her findings by stating that family cohesiveness was a key source of support for the dialysis clients in her study. Furthermore, family cohesiveness was significantly associated with higher morale and fewer changes in social functioning. Diamond's (1979) study offers nursing further evidence of the need to include the hemodialysis client's support system in the rehabilitation process. She is one of the few investigators who recognized the importance of those individuals whom the client deems important to them outside of their immediate family. Despite the insight that Diamond (1979) provides in her study on adaptation, her methodology in measuring social support is weak. The problems of using staff to identify support is fraught with problems as previously noted. In addition the medical complications might have been captured in a more interpretable fashion if she would have utilized the 88 perceptions of the client versus objective measurement through the medical record. Unlike the studies thus far presented not all researchers correlated their findings on the physical and psychosocial dimensions of rehabilitation. A study, conducted by Kutner (1980) is by far one of the most comprehensive research endeavors carried out among the renal population. [A full description of her research was provided earlier]. She utilized the Self-rating Anxiety Scale (SAS) and the Self-rating Depression Scale (SDS) to identify both the level of depression and anxiety within her dialysis population (N = 128). The mean SDS index of depression for the total group was 57.4 (S.D. = 11.056), the median was 50.0, which falls within the symptomatic range of the SDS norms (symptomatic range is 50-60). The distribution of scores was: normal N = 61 (47.7%), symptomatic N = 33 (25.7%), and depressed N = 34 (26.6%), indicating that 50% of the clients sampled manifested symptoms of depression. A comparison of long-term (N = 34) and short-term (N = 93) dialysis clients indicated significantly greater depression (t = 2.28, p = .02) in the short-term (x = 47.7, S.D. = 10.130) dialysis clients. The mean SAS index of anxiety for the total group was 44 (S.D. = 9.538). The distribution of clients across the normal, symptomatic, and anxiety categories was: normal N = 70 (55.1%), symptomatic N = 42 (33.1%), and anxiety N = 15 (11.8%). Thus, approximately 45% of these clients 89 manifest symptoms of anxiety primarily in the symptomatic range. Once again, the short-term dialysis clients indicated significantly greater anxiety than the long-term clients (t = 2.12, p = .036). Collectively, the results of the SDS and SAS indicate that a sizeable portion of these dialysis clients manifest clinical symptoms of both anxiety and depression. These results were in contrast to those obtained within the same population on the Differential Emotion Scale (DES), the Test of Emotional Styles (TES), and the Social Dysfunction Rating Scale (SDRS). On these scales the clients in Kutner's (1980) study were found to perceive themselves as experiencing positive mood states, having normal experience of emotions, comfortable in expressing their feelings, and have a moderately positive attitude towards both the experience and expression of feelings in themselves and in others. The clients saw themselves as minimally dysfunctional with respect to their self-esteem, inter- personal system, and overall performance system. Kutner (1980) suggests that the SAS and SDS, which are designed for the psychiatric population, may not be appropriate for the dialysis population. Kutner's (1980) findings on the psychosocial dimension depict a rather acceptable level of rehabilitation if indeed the anxiety and depression index are not appropriate for the dialysis population. The results of her study provided an encouraging picture of overall physical and 90 psychosocial rehabilitation for this particular dialysis sample. Unfortunately she does not attempt any correlations and attributes the overall poor vocational rehabilitation to the financial incentives associated with disability. Identification of Stressors Associated with Psychosocial Rehabilitation Through the various research studies conducted in the ESRD population numerous potential problems have been identified for achieving a satisfying life style. Two researchers who conducted independent studies to identify the source of the stress felt by dialysis clients, found similar and disparate results. Upon review of these two studies, the lack of uniformity in measurement tools becomes an evident weakness in trying to compare the two sample groups. The first study to be reviewed was conducted by Friedrich (1980) and as discussed earlier her study was designed to measure and identify the perceived physical and psychosocial stressors associated with chronic hemodialysis. Psychosocial problems were reported to have varying degrees of distress. Items relating to uncertainty of the future were identified as the most distressful psychosocial problems reported by 65.9% of the subjects. Problems related to social role changes such as necessity to decrease workload and becoming less active outside the home also precipitated high levels of distress, as 91 indicated by over 50% of the sample. Over 49% of the subjects perceived the illness as distressing to their family with 13% citing extreme distress with this item. Only 19% felt that the family had unrealistic physical expectations of the client. Friedrich (1980) found that the highest degree of distress was identified as occurring with the psychosocial problems rather that with the physical problems. Those who were unemployed reported more distress with all of the psychosocial problems. The greatest difference between the employed and unemployed was with taking financial aid from <3utside sources: an interesting finding in lieu of Kutner's (1980) report of the financial disincentives associated vvith work. Months on dialysis was associated with the Earoblem of family distress. The least amount of distress vvas reported by individuals on dialysis 12-24 months, with 239% reporting no distress. This was in contrast to 16% of 1:Ilose in the 0-12 month group and 19% of those in the 25-91 rn<>nth group who reported no distress. Friedrich (1980) concludes that the results of her StZudy should be read in light of the possible denial of the Sia‘lerity of the distress related to each problem. Several O‘tlier variables not considered in this study include <=<>Fnorbidity factors of the subjects, and assessment of the f 31111 1y ' s perception. A similar study was also conducted by Baldree et al (1-982) in which they explored the types and severity of 92 stressors for 35 clients on hemodialysis. The clients had a mean age of 42.3 years with an age range of 21 to 60 years. The sample included 19 females and 16 males who had no other major illnesses including psychiatric problems. The majority of clients had been on dialysis between one and four years and were unemployed. A stress indentifi- cation scale, which consisted of 29 stressors categorized as either physiological or psychosocial, was developed by the investigators. Estimates of reliability and validity were empirically supported for the scale through the work of Baldree et al (1982) and later by Murphy, Powers and Jalowiec (1985). Murphy et al (1985) found that the original stressor scale actually factored out to three versus two dimensions. They contend that three dimensions had greater homogeneity and suggest that the three dimensions be labeled, psychobiological (r = .83) psychosocial (r = .79) and dependency/ restriction (r = .70). Murphy et a1 (1985) conclude that further data analysis is essential in supporting the validity of this 11001 but recognized its value in identifying issues affecting the quality of life for ESRD clients. The respondents in Baldree's et al (1982) study Completed the Stress Identification Scale during dialysis in the presence of the investigator. They were asked to rank the stressors from greatest to least and then rate the emittent to which they were troubled by each of the 29 items listed on a scale of 1 to 5. The end-points of the scale 93 were represented by "not at all" to "a great deal." Baldree et a1 (1982) found that limitation of fluid was the most frequently reported problem. The other psychosocial stressors which were ranked within the top 10 included uncertainty concerning the future, interference in job, limitation of physical activities, and changes in bodily appearance. The investigators postulate that the stress associated with uncertainty of the future may indicate that clients recognize their inability to control the treatment situation or the future outcomes of their illness. Contradictory to Friedrich's (1980) findings, the subject's in Baldree's et al (1982) study did not perceive problems concerning the changes in family roles as stressful. Baldree et al (1982) did not find a significant (i;ifference between the amount of distress associated with E>hysical or psychosocial factors (t = .58), The overall rneean rating for the entire scale was 71.71 (SD = 20.02) V’isth the highest possible score being 145, indicating eJ'Itreme distress. Following completion of the stressor scale the S‘JIDjects in Baldree's et al (1982) study were administered ‘a‘ <=oping scale. The coping scale consisted of 40 different C3‘3ping behaviors considered to be either affective or EDIWDblem-oriented. This scale was on a 5-point Likert-type f<>rmat that ranged from never to always. The instrument's 94 reliability via the test-retest method is reported as (IS [26] = .79, p < .001). In terms of the coping methods most frequently identified, clients scored significantly higher on the problem-oriented subscale (t = 7.06, p < .001). The least frequently identified methods used were: blaming or taking out tensions on someone else, the use of drugs or alcoholic beverages, and letting someone else handle the situation. Pearson correlation coefficients computed between the stressors and coping scores resulted in no significant correlations. No significant correlations were found between the stressors scores and the demographic data. A chi-square was used to establish a relationship between the lengths of time on dialysis and the reported stressors vvith no significant relationships identified. One final note of interest in Baldree's et a1 (1982) satudy was the finding, although not significant, that n1arried clients scored higher on the stressor scale than ‘tldose unmarried. Quite possible, being married entails m(Dre responsibilities with greater stress when obligations <3€irinot be met. This may also correlate to the assertions ‘315 Levy (1979) that a disparity may exist between the dialysis couple which increases the level of stress and f1I‘llstration with the dialysis life. Baldree et al (1982) n<>ile that no associations between styles of coping and the t3?£>es and severity of treatment-associated stressors could ‘353 extrapolated from their study. In addition, intervening .IIIIIl-__1 95 variables which influence coping responses, such as amount of social support were not available from the data collected, which leaves a number of questions concerning perceptions of stress unanswered. Inclusion of the Client's Significant Other in the Study of Psychosocial Rehabilitation Repeatedly, the conclusions and recommendations offered by the previous researchers have been to continue the investigation of variables which may influence the perceptions of dialysis clients towards rehabilitation. Furthermore, the client's support system is often mentioned as an intervening variable which should be considered not only for data collection but inclusion in the treatment £>lan. This fact is well recognized from a theoretical E>oint of view by Bruhn (1977) who states "Chronic illness eespecially disrupts the usual ways in which family members laeehave toward one another and then hampers their ability to crvercome the effects of this disruption" (p. 1057). [Jrlfortunately, systematic studies of the psychological F>ITc>blems surrounding the partners of hemodialysis clients aJT~ H I“ 3 .3 I: g g 8 5:“ ‘t: H H E I: w an a. H H N u—l U 3 Q) G g; g g g 3 '3 3 a E ii 8 T.‘ Satisfaction ° ° °‘ " uestion S 15 a: :3 :9: 8 5 2 o 3 M m l .18 Sleep/Rest Emotional Behavior 3 - .29 Body Care 3 Movement p.354 . - .44 Home Management ”.003 5 Mobility Social Interaction 075 7 - .47 Anbulation P=.005 - .74 Alertness Behavior P=.001 - .02 Comunication p.445 10 - .33 Work P=.056 11 ~ .39 Recreation 6 Pastimes P=.020 12 - .17 Eating P-.l9 Table 17 167 Correlation Scores Using the Pearson r Between Significant Other's Satisfaction Scores and SIP Scores SIP Scales U) u 0 a E h (D I: in ”.4 o a o o u “.4 Q H 'F‘ m > > Au L» > a w o c o w o. 4: z: u m 4: c #J o a u o o .5 m an .a m m a: ~4 0) no U C: U G 96 F4 u a a o a a o a H G >5 H 'H (I) u .H .5 c a m U u ” ‘“ u 0 U I: H r-i Q G I: a 00 a. *4 H a H u :3 w c: 0 u >5 q; 0H H :3 H .3 H ‘H Satisfaction .3 8 3 8 '3 3 '3 .3 E 3 3 ‘3 Question ‘0 “3 “a 5'" ’3 m < 4: U 3 m m l - .29 Sleep/Rest P- 05 - .66 Emotional Behavior P-.001 - .37 Body Care 3 Movement p..025 4 - .51 Home Management p-.002 5 - .62 Mobility P-.001 - .45 Social Interaction P-.008 7 - .26 Ambulation p._034 - .43 Alertness Behavior P-.012 - .23 Communication P=.11 10 - .09 Work P-.33 11 - .55 Recreation 8 Pastimes P'.002 12 - I‘Z Eating P=.014 168 The correlation between the SIP and SS for the Clients and Significant Others are presented in Tables 18 and 19. Table 18 Correlation of Significant Other scores on SIP and SS using the Pearson r Overall Physical Psychosocial Satisfaction Dimension Dimension Satisfaction Satisfaction Overall SIP - .60 - - (ES -05) Physical Dimension - - .46 — p< .05 Psychosocial - - - .71 Dimension p< .05 Table 19 Correlation of Clients scores on SIP and SS qsing the Pearson r Physical Psychosocial Overall Dimension of Dimension of Satisfaction Satisfaction Satisfaction - .60 Overall SIP (p < .001) - ' Physical — .54 Dimension - (p < .001) - Psychosocial - .51 Dimension - - (p < .003) 169 The overall and dimensional scores between the SIP and SS of the clients and significant others were all negatively correlated to each other at or below the .05 level of significance. Agreement scores were computed between the dyad on both the SIP and SS. The absolute disagreement scores were then correlated to identify perceived congruence on both SIP and SS dimensions. In Table 20 a summary of the correlations is provided. Interestingly, the areas included in the dimension of gainful activity, Work, Sleep and Rest, Home Management, Recreation and Pastimes and Eating, were all found to have no significant correlation between the disagreement scores. In addition the disagreement scores of the physical dimension were not significantly correlated. This indicates that there was no relationship between the dyad members in their amount of disagreement between dysfunction and satisfaction. Correlations Among the Sociodemographic Data and the SIP and SS The final section of this chapter will be the presentation of the interrelationships found among the sociodemographics and the SIP and SS. Data will be presented separately for the clients and the significant others. 170 Table 20 Correlations Using the Pearson rI of Absolute Disagreement Scores Between the Client and Significant Other Correlation Pearson r Score of Correlation Absolute Between Disagreement P Value N A SIP - A SAT .54 .012 17 A Phys - A Phys .20 .149 28 SIP - SAT A Psycho — A Psycho .49 .005 26 SIP - SAT Sleep/Rest - Sleep/Rest .22 .127 28 SIP - SAT Home Man - Home Man .06 .37 28 SIP - SAT Hork - Work .21 .18 19 SIP - SAT Eating - Eating - .11 .28 27 SIP - SAT Rec Past - Rec Past .22 .15 24 SIP - SAT A Phys - A Psycho .46 .006 28 SIP - SIP A SAT - A SAT .34 .042 26 Phys - Psycho 171 Several of the clients sociodemographic character- istics were found to correlate significantly with their responses on the SIP and SS. These variables include the number of additional Chronic health problems, "recovery" time post dialysis, length of kidney disease and age. In Table 2]. an overview of these variables and the client's SIP scores is provided. The one dimension which was impacted by all four variables was home management which was also the highest dysfunctional score among the clients sampled. Table 21 Correlations using the Pearson r among the clients variables: Number of chronic illnesses, recovery time post dialysis, age, length of kidney disease and the SIP. No. of Chronic Recovery Length of Scale Category Illnesses Time Age Kidney Disease Overall SIP Score .45 N.S. N.S. - .32 Physical Dim. N.S. N.S. .49 N.S. Psychosocial Dim. .53 N.S. N.S. N.S. Work Scale N.S. N.S. —.49 N.S. Eating Scale .38 N.S. N.S. — .41 Home Man. Scale .40 .35 .45 ~ .34 Sleep/Rest Scale N.S. N.S. .51 N.S. [All correlations significant at p = .05] 172 The negative correlations found between length of kidney disease and the overall SIP score, eating scale and home management denote less dysfunction as time passes. The data presented in Table 22 are the correlations between the client variables, number of chronic illness, recovery time post dialysis, age, and length of kidney disease and their satisfaction scores. The negative correlations found between these variables imply that their satisfaction is increased when the Client has less of the particular condition or attribute. Table 22 Correlations using the Pearson r between the client variables: Number of chronic illnesses, recovery time post- dialysis, age, length of kidney disease and the Satisfaction Scales. No. of Chronic Recovery Length of Scale Category Illnesses Time Age Kidney Disease Overall Satisfaction - .40 - .45 N.S. N.S. Physical Dim. - .53 N.S. N.S. N.S. of Satisfaction Work N.S. - .45 N.S. N.S. Eating - .34 - .36 N.S. .42 Sleep/Rest N.S. - .36 N.S. .35 Recreation/Pastime - .34 - .40 - .38 N.S. Home Management - .44 - .44 N.S. .34 (All correlations significant at p = .05) 173 An interesting finding was the positive correlations between length of kidney disease and the satisfaction with eating, sleep/rest and home management. These correlations may imply that the client has the ability to readjust his/her satisfaction as the years of illness increase. The data obtained on the SIP and SS from the significant others were correlated with their own sociodemographics and selected variables from the clients' sociodemographic data. Several patterns were noted between the variables. First, there were no significant correlations between the significant others SIP or SS scores and the perceived number of chronic illnesses by the client, length of clients kidney disease, "recovery" time required after dialysis, the clients retirement due to health, or disability status. The clients who did work were perceived by the significant other as less dysfunctional in the following areas: Overall SIP, physical SIP Dimension, psychosocial SIP Dimension, Home Management and the Sleep/Rest scale. Positive correlations were found between those clients who were retired and the same categories listed above except the sleep/rest scale. Table 23 provides the actual correlations between these variables and SIP dimensions. 174 Table 23 Correlations between the Significant Others responses on the SIP to the Client Variables: Retirement and Employment Status Currently Retired Working Overall SIP .53 - .47 Physical Dimension of SIP .49 - .32 Psychosocial Dimension of SIP .35 - .37 Home Management Scale .42 - .35 Sleep/Rest Scale - .48 - .40 [All correlations are significant at p = .05] The number of hours on dialysis per found to correlate with several of the treatment was also significant others responses on the SIP. Table 24 provides an overview of these correlations. Table 24 Correlations between the Significant Others responses on the SIP to the Client variable: Number of hours on dialysis_ Number of Hours on Dialysis Overall SIP Score Physical Dimension of SIP Home Management Scale Recreation and Pastimes - .32 - .39 - .51 - .33 [All correlations are significant at p = .05] 175 The negative correlations indicate that those clients who are on dialysis for longer hours are perceived with less dysfunction in the listedareas by their significant other. The other sociodemographic variable which correlated with the responses of the significant others on the SIP and SS was the amount of information given to the significant other about the client's illness. Recall from the discussion of the significant other's sociodemographics, that 30% (8 subjects) did not feel that they had received an adequate amount of information about the client's illness. Positive correlations were noted between the significant others responses on the sleep/rest SIP scale (.40, p = .02) the recreation and pastime SIP scale (.40, p = .02) and the amount of information received. The positive correlations indicate that those who perceived a lack of information also perceived greater dysfunction. The amount of satisfaction perceived by the Significant Other was also impacted by the amount of information. Table 25 provides the correlations between the SS and the amount of information received by the significant other. The negative correlations indicate in Table 25 denote that the satisfaction of the significant other decreased as the amount of perceived information decreased. There were no other significant correlations with this particular variable within the Significant Others sociodemographic data. 176 able 25 prrelations using Pearson r between the amount of nformation received by SO, and their degree of atisfaction with clients current rehabilitation status Amount of Information verall Satisfaction Score - .55 hysical Dimension f Satisfaction - .39 sychosocial Dimension f Satisfaction - .44 ome Management - .50 ecreation and Pastimes - .38 [All correlations are significant at p < .05] Summary The content within Chapter five provides the tatistical analysis pertinent to the study questions. In ddition, the reliability coefficients of the study nstruments were provided. Data to support or clarify the articular findings were also presented. Chapter VI SUMMARY AND CONCLUSIONS Overview In Chapter VI the research findings will be discussed. he descriptive statistics of the sample will be presented ith comparisons to other research samples. The nferential statistics will be used to draw conclusions rom the research questions. Based upon these conclusion mplications for nursing practice, education and research ill be addressed. Sample The sociodemographic information for the 28 ESRD dyads ncluded age, sex, race, marital status, education, income, nd employment. Additional extraneous variables utilized 0 describe the ESRD clients included current health roblems, and the prescribed treatment regime. The current ealth status and treatment related variables were also ollected to describe the significant others. Sociodemographic Data of the ESRD Clients ge and sex The sample included 17 males (61%) and 11 females 39%). The mean age for the entire sample was 52.6 years ith a total age range of 29 to 73 years. These figures re congruent with those found by several researchers Gutman,et a1 1981, Matthews 1980, Kutner 1980, Friedrich 177 178 980, Bruinsma, 1982, and Evans 1982). For the most artmen on dialysis outnumber females by a 2:1, margin Matthews, 1980). This may be due to the greater incidence f illnesses among men which contribute to kidney disease .e., cardiovascular disease (Brundage 1980). In terms of he mean age this would be expected in lieu of the types of nderlying disease processes in this sample i.e. polycystic idney disease, diabetic nephropathy. Such diseases are ommonly found to affect renal function in the mid-life ears. In addition, the mean age of most samples is eflective of the fact that children and adults do not ialyze in the same unit. This is due to the special needs f these age groups. The program at the Michigan ephrology Center is centered strictly on adults. age The distribution of clients between the races in this tudy is in contrast to other research samples. In Evans t al (1982) sample of 347 in-center hemodialysis clients he ratio of whites to blacks were fairly similar (41.9% lack, 54% white), while clients from the home program were onsiderably different (8.6% black, 86.5% white). The iscrepancy noted in the sample obtained for the present tudy, (71.4% caucasian and 28.6% black) could be due to ne subject criteria which eliminated over half of the vailable clients, thereby potentially skewing the amographic data. 179 arital Status Congruent with most of the rehabilitation research, he majority of clients in this sample were married 71.4%). Friedrich's (1980) study of 97 hemodialysis lients had almost identical percentages (75% married). gain, due to the subject criteria and mean age of the resent sample, the disproportional number married was xpected. There was very little variation in the type of elationship between the significant other and the client, herefore potential differences in the study variables were at evaluated. ducation The majority of clients in this study had a minimum, 2 years of education (89%) with college education obtained y forty-six percent of the clients. The educational tatus of this sample was higher than that found by Gutman t al (1981), Friedrich (1980), and Evans et a1 (1982). he clients in their studies were mainly high school raduates with a small percentage citing college reparation. Once again the subject criteria could have nfluenced the proportions found in this study. Educational level has been correlated to employment tatus by several researchers. Ferrans and Powers (1985), n their study of 20 employed and 20 unemployed dialysis atients (all eligible for employment), found that 75% of hose employed had education beyond high school. Similarly utman et a1 (1981), also found that employment was 180 orrelated to advanced education. These findings orrespond to those within this sample. Education had a egative correlation to those who were retired due to ealth (r = -.32, p = .05). Although this correlation is ow there does appear to be an association between ducation and those who may have opted for early atirement. The underlying assumption as noted by Gutman : a1 (1981), and Ferrans et a1 (1985), is that the types f occupations associated with higher education are ongruent with the physical limitations and time )nstraints of dialysis. :cupation and Income Only 22% (N = 6) of the clients sampled were currently nployed outside the home. Of the 78% (N = 21) not )rking, 61% (N = 13) identified themselves as retired due > health reasons, while 23% (N = 5) considered themselves -sabled and 16% (N = 3) reported being retired. xterestingly, 38% of those retired due to health were ients not near the typical retirement age (range 41-58 ars). The positive but low correlation between age and is variable (r = .37, p = .03) brings forth several estions as to why a middle age adult would identify m/herself as retired from the work force. To remove eself from the work-world may denote the relinquishment past roles often experienced with ESRD. Such a linquishment of the work role may be associated with eir attempt to adapt to the confusing nature of the sick 181 ole. This inference may be supported by the low atisfaction perceived by the clients (2 = 2.6) in relation 0 their ability to work and the negative correlation r = -.36, p = .039) between the sociodemographic data, etired due to health and their work satisfaction score. Contrasting the age of those retired with clients who dentified themselves as disabled, a negative correlation as found between age and disability (r = -.46, p = .006). his may imply that the younger clients view their present roblems as temporary with the future holding options utside of hemodialysis. The small percentage of clients in this study found to e currently employed is congruent with other research amples. In Kutner's (1980) sample of 132 chronic emodialysis clients less than 40% of the male dialysis lients and 20% of the female dialysis clients were :tively working outside the home. Ferrans and Powers [985) found only 23% of the clients from a potential pool E 195 were considered eligible for work, with only half of iose eligible currently employed. Both of these authors Lte numerous reasons for the poor employment rates within 1e ESRD population. One of the most prominent is the isincentives imposed by the current Social Security Lsability Benefits (Kutner, 1980). Other causes include Lme constraints, poor work history, fear of potentiating 1e illness and psychological apathy (Rounds et a1, 1985). 182 )iagnosis of Kidney Disease Equal percentages of this sample reported the etiology if kidney disease as Diabetic Nephropathy (28%) and ’olycystic Kidney Disease (28%). An additional 28% did not :now the cause of their kidney dysfunction. Evans et a1 1982) found in his sample of 364 hemodialysis clients, :hat 23% were diagnosed with Polycystic Kidney Disease, and .8.% had Diabetic Nephropathy. Although, the percentages ire higher in the clients sampled for this study, the 'esults are not that unusual. The limitations imposed by he sample criteria most probably effected the large troportion of these two illnesses. The 28% who could not .dentify the etiology of their kidney disease is also not .nusual. Evans et a1 (1982) cites the difficulty in .omenclature used in kidney disease due to the interrelated .ature of the different disease processes. The majority of clients (82%) in this sample reported nowing they had kidney disease for over three years. nterestingly, no comparisons can be found within the esearch studies critiqued. Most of the demographics :mclude length of time on dialysis rather than length of idney disease. Apparently, the focus of most ehabilitation studies and efforts occur after the client 3 started on dialysis. Such a realization may partially xplain the problems facing the clients and their ignificant others. These findings suggest they may have een trying to cope with the issues of rehabilitation long 183 afore the actual start of dialysis, setting into place ieir patterns of adaptation. The ability of the dyads in aeting the challenges presented by ESRD is essential for a :owth-producing relationship. The work associated with 3RD begins at the time of diagnosis not at the start of ialysis. This concept is supported by Molumphy and >orakowski (1984) and Rounds and Israel (1985) who infer 1at family disorganization begins with the initial Lagnosis and assumes a cyclical pattern as the disease :ogresses. Unfortunately, due to the wording of this particular lestion on the Sociodemographic Survey, as well as the railable time choice offered between length of time on Lalysis, and time since diagnosis the ability to :curately identify the pretreatment period is hampered. .though the majority of clients (82%) sampled, reported 1e time since starting dialysis and the length of their dney disease within similar time frames thereby inferring short pre-dialysis period. A positive and strong correlation (r .77, p = .001) tween length of kidney disease and time on dialysis was so found. The possibility that most of the clients began alysis at or near the time of diagnosis does exist. This uld not be unusual since kidney disease is often not tected until considerable renal tissue is destroyed. ‘undage (1980) noted that the client may remain ymptomatic until 50% of the nephrons are dysfunctional, 184 vith diagnosis being made through a routine physical. If clients do start dialysis shortly after their initial diagnosis is made, a number of issues related to :he dyads adaptation need to be considered. The ability for adaptation may be seriously compromised by the multiple stressors imposed upon the dyad any point along the :ontinuum. This View of the dialysis experience cannot be examined in this study but will be among the suggestions for further research. BEES? of Chronic Health Problem§ Unlike the findings of Matthews (1980) the clients age .n this study did not significantly correlate with the number of additional chronic health problems. The [iscrepancy between these variables may be explained by the lifference in the type of respondents. Matthews (1980) Ltilized professional judgement versus actual subjective 'esponse to note additional health problems. Quite likely, .ealth providers may associate additional health problems 5 complications of kidney disease rather than unrelated troblems. Unlike clients who may view the problems ,istinct from each other. The list of chronic illnesses used in this study did ave association with ESRD, such as arthritis, hyperten- ion, heart disease, and diabetes. Quite possibly the arge number (N = 20, 71.4%) reporting additional illnesses s explained by the fact that the clients viewed them as istinct illnesses not associated with their kidney disease. 185 The number of reported chronic illnesses in this tudy was congruent with those reported by Evans et a1 1982). In his study of 347 in-center hemodialysis clients he average number of co-morbidity factors was 1.55 per lient, correlating to the mean of 1.6 number of illnesses er client in this study. The list of illnesses used by vans et a1 (1982) could also be interpreted by some as omplications of dialysis versus separate disease entities. There was no correlation in the subjects of this study etween number of additional chronic illnesses and nployment status, length of kidney disease, or number of ays or hours spent on dialysis. Due to the potential lsinterpretation by the client when responding to the imber of additional health problems, further assumptions :e limited. ;alysis Prescription The typical dialysis schedule for the clients in this :udy was four hours of dialysis, three times a week. This ‘escription is characteristic of the clients sampled by immings, Becker, Kirscht and Levin (1982), Cheek (1982), .d Murphy et a1 (1985). A number of interesting correlations were noted etween the other sociodemographic data and these riables. A positive but low correlation (r = .34, p=.05) s computed between the number of days on dialysis and ient's who reported being retired due to health. Again, ias'would corroborate the decision to opt for early 186 retirement from work due to the time impediments of lialysis. Noting the negative correlation (r = -.44, >= .02) between number of days on dialysis and income, the :ime required for dialysis may indeed be the problem for iaintaining paid employment. Ferrans and Powers (1985) note several reasons for the number of unemployed ESRD :lients, one of which is the time needed for treatment. dlver (1980) states that one immediate result of being on ialysis three times a week is that the patient cannot work _normal job schedule. This means that one of three things ust occur: reduce working hours, quit working or find a ob that offers a flexible work schedule. The barriers to inding a flexible job or reducing one's work hours are uch that, quitting work all together becomes the best lternative. Recovery" Time Post Dialysis The mean number of hours reported by the clients for recovery" after each dialysis treatment was 8.5 hours. nterestingly, 22% (N = 6) reported needing 12 hours to eel better and 15% (N = 4) actually required 24 hours. iere were no available comparisons to other research Imples found in the literature. Kutner (1980) did report we mean number of "down" time per male and female clients : 12.46 hours, and 11.95 hours respectively. She does not irrelate the "down" time with their dialysis schedule. Attempts were made to explain the amount of time zeded in this sample. There were no significant 187 correlations between the post dialysis recovery time and the client's age, employment status, number of days or iours on dialysis or number of additional chronic health problems. The only significant finding was the negative :orrelation between recovery time and length of kidney lisease (r = -.47, p = .05). Matthews (1980), found in her study which included .29 chronic hemodialysis patients that their overall Ldjustment increased over time. She states that clients an adjust to dialysis and incorporate the physical and sychosocial demands into their lives. The amount of ecovery time in this study declined in relation to the ength of the clients kidney failure. Certainly, one might peculate that over time the clients were able to adjust to he physiological changes that occur during dialysis. ther factors which may contribute to the amount of recovery" time required after dialysis include: ompliance of dietary and fluid restrictions, ardiovascular complications during dialysis, anxiety (perienced with dialysis, time of day the client dialyzed, : the spacing of dialysis treatments. Unfortunately, none these potential variables were measured in this study. 1e most striking significance of this finding though, was 1e realization that for four individuals by the time they alt better, a dialysis treatment was most likely :heduled. The following section will be devoted to the 188 interpretation of the sociodemographics of the significant others. The lack of available data from other research samples on the ESRD client's significant other limits the ability to make comparisons to other samples. The demographic data obtained on this sample included: age, sex, race, marital status, education, and occupation. Extraneous variables pertaining to their overall health status and dialysis related activities were also measured. Sociodemographic Data of the Significant Others Age and Sex The significant other's were primarily females (71.4%) with a mean age of 52.2 years. These figures would be expected since the majority of the dyads were married (71.4%). Due to the low proportion of male to female significant others, no attempts were made to identify potential differences in their responses to the study variables. The fact that the majority were females will be considered when discussing the major study variables. M The significant others, like their partners, were primarily caucasian (75%), with the remaining 25% within the black race. These figures were expected due to the relationship between the dyads. 189 Education Over 39% of the significant others completed high school, with 43% citing college preparation. Comparing this sample to Hafstroms and Schram's (1984), non-renal sample of wives with chronically ill spouses the educational level is higher. Hafstrom et al (1984), found an average of 13.8 years (N = 37) of education. Molumphy et a1 (1984) noted an average of 8.9 years in their sample of 20% hemodialysis spouses. The differences noted between samples may be due to sampling bias. Occupation Only 43% of the significant others worked outside the home in either full (N = 10) or part-time (N = 2) positions. Occupations ranged from unskilled laborer, to professional positions. There were no significant correlations between the employment status of the significant other and any other sociodemographics. Further discussion of this variable will be incorporated with the major study questions. Health Status The majority of the significant others in this study rated their overall health status as good (60.7%, N = 17). Fair health was cited by 21.4% and 13.7% considered their health as poor. Overall, the significant others who responded did not perceive an affect on their health due to the client's illness. In fact 23% reported that their 190 actual health improved. The reported increase in health by four of the significant others, might be explained by an acute awareness of personal health risks. They may recognize the importance of maintaining their own health in order to carry out the additional responsibilities assumed due to the client's illness. The number of significant others reporting chronic health problems (N = 11, 39.%) did correlate (r = .45, p = .010) with a decline in their perceived health. Further, the age of the significant other also correlated to the number of reported chronic illness (r = .35, p = .038). These findings may be typical not only due to their particular age group (a = 52 years), but also in comparison to other research samples. A third of a group of wives (N = 30) sampled by Sexton and Munro (1985), who did not have a chronically ill husband were noted to have a chronic illness. While the wives of the COPD clients not only reported more health problems but rated their overall health lower than the wives of the non COPD sample. No comparisons to a renal sample was available. Several correlations between the health status of the significant other and the client's sociodemographics were interesting. The number of days the client dialyzed had a positive correlation to the decline in the significant other's health (r =.50, p = .004). A positive but low correlation was also found between clients who retired due 191 to their health and significant others who reported a lower health status. (r = .43, p = .013). These correlations may be partially explained by the fact that the same clients' who dialyzed more per week also had retired early and were older. Therefore, the significant other's were probably older and more prone to developing chronic health problems. The positive correlations between these sociodemo- graphic data may also be attributed to the difficulties experienced by older adults with chronic illness. Matthews (1982), found that older clients have difficulty with role adjustments and experience more stress in their overall adjustment. Recognizing that ESRD affects the significant others equally, one might hypothesize that the older significant other will also have increased stress. Ultimately, the health of the client's significant other may decline in response to this stress. Activities Performed For the Clients The majority of the significant others reported assisting the client in various health—related activities. These activities included preparation of special meals, reminding the Client to take their medications, transport- ation to and from dialysis and monitoring their blood pressure at home. There were no significant correlations between the activities performed and the sociodemographics of the significant others. Finding the high percentage of significant others who assist the client would not be that unusual, especially since the majority of significant 192 others were females. Diamond (1979), notes that the client's family is often the first provider of care. Responsibilities may be delegated to the significant others by both the client and the health team. De Nour et a1 (1980) and Rounds and Israel (1985), have found that the client often assumes that his/her significant other is a partner in their health care. The client may wish to foster a dependent role on the family to help buffer the overwhelming losses associated with chronic illness. The significant other may respond generously to the client's needs. Given the opportunity to perform specific tasks the individual may initially feel less stress and in a sense relief. Problems arise though, when the significant other is not relinquished of the care taking role. The situation may be such that the significant other now feels controlled by the illness. Personal time infringements may ultimately impede upon the significant others social network limiting the support he/she needs. A significant negative correlation was found between the number of activities performed and the length of time the client had been on dialysis (r = -47, p = .005). This would indicate that the client either becomes more indepen— dent in time or the significant other begins to relinquish, care responsibilities the longer the client is on dialysis. Such a situation may occur when the significant other does not see a benefit of the activity to the client's health or 193 tires of the chronicity of care requirements. Finally, a positive correlation was noted between the number of performed activities and the clients who had a number of chronic illnesses (r = .31, p = .05). For the most part, this low correlation would be indicative of the increased dependence on others in relation to the number of client illnesses. Information Received The majority of the significant others (70%, N = 20) felt they had received adequate information about the client's illness. Those who did not feel they had received adequate information (N = 8, 30%) had no significant correlations to the other sociodemographics. This particular variable will be discussed in greater detail later in this chapter. Inferences will be limited due to the wording and response menu of this question on the sociodemographic survey. Implications of the Sociodemographic Data to Nursing Practice and Education Several areas within the client and significant others' demographics must be considered in advanced nursing practice. The nursing process is dependent upon the assessment of the individuals prior to the planning and rendering of nursing care. The Clinical Nurse Specialist (CNS) must consider the variables which influence the perceptions of the individual. In view of the complex 194 nature of man the number of variables which influence the individuals perceptions is also complex. The sociodemo- graphic data of the clients and their significant others were found to have several interrelationships. Each correlation provided a clearer profile of the ESRD dyad. Ultimately, these profiles will serve as a guide to identifying those individuals who are at risk in adjusting to ESRD. Such information, can be used to direct the energies of the CNS towards those clients and their significant others. In addition to the assessor role, the CNS must model both the methods and necessity of obtaining an adequate profile of the client and their significant other. Through role modeling, the CNS will have the opportunity to demon- strate to other health care workers how to individualize their own assessments based on key high risk factors. Often times, the health providers in chronic care begin to approach their care in a set pattern regardless of the client profile. In time generalizations are made based on limited data resulting in, interventions that are limited and frustrating. This scenario was apply described by Diamond (1980), who noted the essence of chronic care beginning with assessment of the dyad. Finally, the CNS must educate fellow health workers on the complex nature of man and his/her response to chronic illness. The educational process may occur through both discussion and the written assessment. Furthermore, the 195 emphasis on family versus client assessment must begin in the academic setting. All levels of nursing education need to focus the basis of interventions on a theoretical framework derived from the family assessment. King's (1980), nursing theory was utilized to develop the theoretical framework of this study. The pictorial representation (See Figure 3) included a list of intervening variables under the client and the significant other. These lists may be misleading due to their limited nature. Each variable is only one potential modifying factor influencing the individual's perception. Recalling from King's (1981), theory, perceptions are derived from an individual's awareness of persons, objects and events in relation to their own self, body image, time and space. The variables as cited in the current framework are incomplete. The following change to the nursing model will avoid any mispresentation of the types of variables which must be considered with ESRD. Under the client, the influencing variables should include seven broad categories: Personal Characteristics, History of Chronic Illness, History of the Dialysis Prescription, Concurrent Health Problems, Current Social and Family Roles, and a financial profile. Certainly, one researcher could not incorporate each variable into one research study, but, readers can recognize the possible number of intervening variables. Through this addition, interpretation of research findings will be made easier. 196 The influencing variables listed under the significant other also need to be replaced with five broad categories. These would include: Personal Characteristics, Health History, History of Family and Social roles, Relationship with the Health Care System and current knowledge and expectations of the client's illness. Again, the purpose of the broad categories is to depict the numerous variables involved in the significant others perceptions. Nursing education must provide the theoretical framework of the complex nature of man and his/her response to illness. Implications of the Sociodemographic Data to Nursing Research The revision of the nursing model as suggested, will serve as a cornerstone for future research. Each of the intervening categories must be critically examined in relationship to each other, to assist in identification of high risk factors. Further, evaluation of nursing interventions aimed at modifying one of the variables will be made easier. Several modifications are necessary on the sociodemographic survey used in the study. The changes are due in most part to the difficulty found in interpretation of the responses. On the client's survey (See Appendix E), the following questions require clarity in either the stem or the response menu: Question #14 The response menu should be altered so that the time 197 intervals are mutually exclusive and more specific, i.e., less than 6 months, six to 11 months, 12 months to 24 months. Question #13 The stem should read, how long did you know of your kidney disease before starting on dialysis. The response menu should also be more specific as noted in question #14. Question #16 Modify the stem to read, chronic illnesses not associated with kidney disease. Question #7 Homemaker should be added to the response menu. In addition, the following information should be included in the sociodemographic survey: Number and types of complications during and after dialysis. Retirement age Although these changes will not encompass all of the influencing variables they will improve the interpretation of the current survey. On the significant other's sociodemographic survey the following changes are recommended: Question #7 Homemaker should be added to the response menu. 198 Question #15 The stem should include a time frame such as, currently have you received enough information about the client's illness. The response menu should then be made more specific. Again, these changes would only clarify the variables which have been selected from the broad categories. Finally, through the identification of a broad client profile and potential risk factors, nurses can design their research methodology more appropriately. As with this sample, a number of potential subjects did not meet the study criteria due to physical limitations such as poor eye sight. Ina retrospect, an interviewer administered design would have been more conducive to these subjects. One of inns main problems noted by Osberg, Meares, McKee and Burne's (1980) in the ESRD research, is the small sample sizes. Quite possibly researchers have failed to recognize the limitations imposed by their study criteria. Interpretation of The Major Research Questions and their Sub-Parts The next section will be interpretation of the major research questions and their sub-parts. Since the sample was limited in size and convenience in nature, no generalizations to the population can be made. 199 Perceptions of Rehabilitation: Question I, Ia, Ib, and Ic Question I What is the degree of perceived congruence between the hemodialysis client and his/her significant other regarding the client's rehabilitation status? A positive correlation (.47, p = .006) was found between the overall SIP scores of the client and their significant others. This highly significant correlation would indicate that the perceptions between the dyads are moderately congruent.r Each perceived the client's current dysfunction in a similar direction. Since the overall score is a composite of the dimensional SIP scores, the moderately low correlation was not unexpected. This will become clearer as the dimensional scores are discussed. Question Ia What is the degree of perceived congruence between the client and his/her significant other on the physical dimension of rehabilitation? Again, a positive correlation (.75, p = .001) was found between the dyad in relation to the perceived physical dysfunction. This correlation with it's strong significance level reflects a high degree of congruence between the dyad. The ability to see physical dysfunction is supported by the work of Landsman (1979), and Falvo, et a1 (1982). Disabilities that are readily observable offer the client environmental feedback. 200 An interesting comparison of the perceptions of a non- renal group of chronically ill clients and their spouses can be found in Foxall, Ekberg, and Griffith (1985) study. Using a variety of chronic illnesses Foxall et a1 (1985) found that spouses perceived less physical dysfunction then their chronically ill partner. Foxall et a1 (1985) noted that the spouses could either not objectively evaluate their partners or did not want to "see" them as disabled. Question Ib What is the degree of perceived congruence between the client and his/her significant other on the psychosocial dimension of rehabilitation? The correlation computed between the scores of the clients and their significant others on the psychosocial dimension (.14, p = .22), did not reflect a significant degree of congruence, between members of dyad. Clients perceived more dysfunction on the social interaction scale while the significant others perceived more dysfunction in the client's emotional and alertness behavior. The components of this dimension have been well documented in the literature as problematic for ESRD clients and their significant others. Falvo et a1 (1982), cites the difficulties in recognizing limitations outside of those that are directly observable. The discrepancy between the dyads in this study may have resulted from the difficulty in evaluating one's own behavior. The types of questions included in the psychosocial dimension, called 201 for some amount of introspection on part of the client. Since, the client was given limited time to complete the survey, this may have affected their response. Further- more, difficulty may ensue in trying to evaluate one's behavior in their own social system. This would help explain the fact that the clients perceived less dysfunction in their emotional and alertness behavior. The significant other being on the receiving end of the behavior, may be in a better position to evaluate the client. The lack of a significant relationship between the perceptions of the dyads in these areas may affect their patterns of interaction. Speidel et a1 (1981), found that dialysis partners tended to avoid disputes, withdraw from quarrels and frequently agreed with the client's opinion. If the partner does not have a social outlet for anger, he/she may experience more anxiety and depression. In terms of the client's social interaction, the significant others perceived less dysfunction than the clients. The questions in this scale surround the amount of time the client engaged with other people. Quite possible, the significant others included the client's time spent dialyzing, in a social sense. The changes in social activities is not an uncommon finding in dialysis samples. Numerous authors have found that the amount of time spent with others is significantly lower than pre-dialysis (Kutner, 1980; Evans, 1982; 202 Bruinsma, 1982). Rounds et al (1985), states that the change in social interaction may be self—imposed as well as due to the time commitment for dialysis. Loss of social contact often occurs because individuals may not have enough energy to spend with others. Those who have lost jobs no longer have contact with co-workers. The end result for many ESRD clients can be a change in or shrinking of their social network at a time when support is most needed. Examination of the subjects sociodemographics provides nursing the opportunity to identify clients who may be at risk for dysfunction in the psychosocial dimension. In this sample the client's who reported having additional chronic illnesses had more psychosocial dysfunction (r = .53, p = .05). The problems imposed by other chronic illnesses may only compound the emotional adjustment. A "wearing" down effect is quite possible, leaving the client with a feeling of depression and hopelesness. In addition the significant others perceived clients who were retired with a greater pyschosocial dysfunction area than those who were currently working. The association between the client's retirement and the perceptions of the significant other can be interpreted in several ways. One of the most common findings is the difficulty in adjustment of the older adult (Matthews, 1980). Since there was a moderately high correlation between retirement and age (.63, p = .001) this explanation 203 may be valid. Secondly, the difficulties of retirement often experienced by individuals may only be compounded with the losses associated with a chronic illness. In either situation these variables will provide nurses with strategies for intervention. Question Ic What is the degree of perceived congruence between the client and his/her significant other on the rehabilitation dimensions of work, sleep/rest, eating, recreation and pastimes and home management? These scales were utilized to measure the clients' gainful activity. Congruent with the literature, these areas had the greatest degree of dysfunction. The perceived dysfunction on the SIP Scales of sleep/rest, home management, and work had a moderate degree of congruency between the members of the dyads. Two of the areas, recreation and pastimes and eating, did m2; have significant correlations between dysfunction scores. The high dysfunction scores noted in the sleep rest scale has been well documented by other researchers (Kutner, 1980; Friedrich, 1980; Ferrans et a1, 1985; and Bruinsma, 1982). The underlying etiology has been attributed to the client's low hematocrits as well as a symptom of the depressed nature of these clients. In either situation, the problem appears to be fairly universal and cited as distressing in other research 204 samples (Kutner, 1980). Interestingly, both the sleep/rest scores of the clients and their significant others were significantly correlated to their individual physical dysfunction scores. In fact the significant others scores had a high correlation (r = .73) that was significant at the p = .001 level. The implication of these correlations is that increased physical dysfunction is associated with sleep/rest disturbances. The sleep/rest scores from the significant others also had a high correlation to their scores on the psychosocial dimension. The significant others may associate the client's sleep/rest disturbance with impediments to social interaction and a cause of their altered alertness and emotional behavior. Finally, the significant others perceived less dysfunction in the sleep/rest category in those clients who were either retired or currently working. The potential explanation for this may be that in either case, the client is less fatigued due to relinquishment of the breadwinner role or is less fatigued thus able to work. Home management was the highest ranked area of dysfunction by the clients, where as the significant others ranked sleep/rest disturbance above home management. Again, dysfunction in this area is not unusual as noted by Kutner (1980), Bruinsma (1982) and Diamond (1979). The problems have been attributed to both fatigue, lack of time, and relinquishment of usual roles. In this sample, 205 since the majority of clients were male, dysfunction in home management may reflect their inability to do the heavier chores often associated with the male role. Interestingly, from the client's perspective the number of Chronic illnesses, amount of time needed for recovery after dialysis, and age, all had positive correlations with home management, while length of kidney disease was negatively correlated. Again, the data provides further evidence that the longer the client is on dialysis the less amount of dysfunction is noted. Yet, the one area of the client's life most apt to be affected by the treatment process is their home responsibilites. In addition, correlation of the clients scores between home management and the psychosocial dimension of the SIP were correlated in a positive direction. This would suggest that the clients who do not or cannot perform their usual home roles may be experiencing greater emotional turmoil. In relation to their perceived difficulty is the stress which may be experienced by their significant others. The significant other also perceived dysfunction in the area of home management. Although, the scores were slightly lower than the clients, they also had positive correlations with both the physical and psychosocial SIP dimensions. The underlying question becomes, how have the significant others responded to such a situation? Most likely, they have assumed the responsibility for the home 206 management roles usually performed by the client and equally have had to contend with the client's behavioral changes, or found others to do it making client feel even less helpful. Since the correlation between the significant others Home Management scores and the physical dimension was high (r = .83, p = .001) could the significant others be perpetuating the sick role. Levy (1979) cautions ESRD health care providers in being alert for situations in which family roles are readjusted to the detriment of the client's self-image. One last finding which may provide more insight into the home management area is the correlation between number of hours on dialysis and the amount of dysfunction perceived by the significant other. For the most part, the significant others perceived less dysfunction with increased hours on dialysis. Brundage (1980), has cited that a range of efficiencies is possible with dialysis therapy. Clients who dialyze longer may have better clearances, thereby experience less physical dysfunction and able to carry out some response. Most clients do not opt for longer hours despite this fact. Increased dialysis time may be associated with greater dependency and restriction of freedom. The recreation and pastimes dysfunction scores between the clients and their significant others were not significantly correlated to each other. Despite the lack of a relationship, each perceived a high amount of 207 dysfunction in this area. Based on the literature, the reduced recreational orientation experienced by clients has been consistently cited as a stressor (Hastings, 1982; Kutnery 11980; Bruinsma, 1982; and FriedriCh, 1980). The possible explanations may include lack of time, reduced social network, fatigue or inability to partake in the more strenuous activities once enjoyed. The absence of a significant correlation between the dyads 1J1 lieu of mutually high dysfunction scores is puzzljxmy. One explanation could be the disparity of perceptions in this area between the dyads even before dialysis. Quiter possible, each member of the dyad had their own activities not shared. The amount of dysfunction perceived by the clients and their significant others in the clients's functioning at work also correlated. This result was somewhat surprising in lieu of the expressed difficulty by the significant others in evaluating the client's in this area. Indeed the other surprising fact was the low amount of perceived dysfunction. Possibly, the computed dysfunction low due to the number of employed clients thereby, not reflective of the true impact of ESRD on work performance. Equally, the negative correlation between age and the work scale indicates that those who were younger had less dysfunction at work. The other in“) scales, eating and communication, had scores of less than 10% by both the client and significant 208 other. These scales were not truly applicable to the dialysis sample. For example the eating scale gave dysfunctional scores for being on a special diet. In this population, a special diet is part of the treatment program and should not be considered dysfunctional. On the communication scale, the subject criteria ruled out those individuals who would have had difficulty with many of the items. Due to these reasons, the findings on those scales will not be discussed. Implications of Question I, Ia, Ib, and Ic to Nursing Practice and Education Kings' (1981) theory of interacting systems was found to provide the structural framework needed for study question I, la, Ib, and Ic. Although only a small portion of the model was tested, the data can be applied to the entire framework for development of nursing interventions. Theiss (1982) identifies the critical nature of exploring perceptions as the first step in the nursing care of ESRD dyads. Noting that perceptions are time specific, the rehabilitation data collected in this study were specific to the dyad's time interval on dialysis. Therefore, the congruency or lack of between the dyad members was a result of past reactions, interactions and transactions. Such information provides the nurse with insight on the types of issues the dyad has previously dealt with and those presently facing the dyad. Further, by noting the 209 significance of the moderating variables, the nurse may be able to detect those dyads who are at high risk for dysfunction. After identifying the perceptions of the dyad's members, there will be a clearer understanding of the reactions and interactions occurring between the dyad. Through this assessment process, the dyad can be assisted in recognizing their differences. Mutuality can then be developed and energy directed towards optimal rehabilitation. An additional goal of the nurse should be to teach effective communication techniques to the dyad. Role modeling of open communication will allow the ESRD dyad opportunity to explore new ways of managing their differences. Such an intervention was supported by Hastings (1985) who found improvement. Despite the fact that length of time on dialysis and length of kidney disease were not found to consistently correlate with the dyad's perceptions of dysfunction or satisfaction these variables are considered as critical components in rehabilitation (Rounds et a1 1985). The process of rehabilitation begins at the time of diagnosis and continues in a cyclic fashion over the years. Recognizing this fact, the nurse must develop strategies to foster mutuality before the start of dialysis. One such intervention would be the development of a pre-dialysis education program. In this environment, clients and their significant others can learn about kidney disease and begin 210 to explore the impact of ESRD on their lives. Favoring such a program is the benefit derived from social interaction with other couples. Up to this point the nursing interventions developed have been focused on perceptions of the chronic illness. Often, the entire area of health promotion is neglected, due to the overwhelming problems of ESRD and dialysis. From the data collected in this study, additional health problems were found to correlate with increased dysfunction. The compounding problems of complications from dialysis as well as from other diseases is discouraging to both members of the dyad (Evans, 1982; Rounds et al 1985). For this reason the nurse must not neglect health promotion activities when rendering care to both the client and their significant other. Since the majority of nurses practicing within the ESRD health system are not in advanced practice, continuing education is essential. Considering that generic nursing education is primarily centered around acute care, most nurses have not been well-prepared to work with chronic illness. The shifting of health needs from acute episodic care to outpatient chronic care mandates a knowledge base of adaptation, compliance, and theories on role and loss (Foxall et a1 1985, Corbin et a1 1984). Such information must be integrated into generic nursing programs. Current nursing staff should be offered courses and seminars focused on rehabilitation of the chronically ill 211 adult. Essential information will be needed in interviewing and counseling techniques, and the pathophysiology of ESRD. Finally, nurses must be encouraged to explore their own perceptions of rehabilitation in lieu of the theoretical frameworks available for chronic care. Only through this process will nurses be able to provide the vital link to transactions in Kings (1981) theoretical framework. Implications of Question I, Ia, Ib, and Ic to Nursing Research The optimal research design for studying rehabili- tation in ESRD client's and their significant others would be longitudinal. Rehabilitation is a process with distinct phases over a period of years. Several researchers have identified certain problems intrinsic within each period and the relationship to adjustment (Rounds et a1 1985, Levy 1979). Therefore, longitudinal researdh as well as time specific studies are needed to help guide intervention of the health team for optimal rehabilitation. The SIP would be an appropriate measure for a study with multiple administration over time to the same population. Gilson et al (1975)-recommends repeated administrations of the SIP as a basis for evaluating health interventions. In essence, tflua SIP dysfunction score would be expected to change in relation to the treatment plan. Research should also be conducted in which the 212 perceptions of the client, significant other and the primary health provider are correlated. Such investigation is essential based on the relationship between the perceptions of the nurse and the dyad in King's (1981) theory. Supporting the inter-relationship between these individuals are Rounds and Israel (1985), and Anger and Anger (1974). In terms of the usefulness of the SIP in the measurement of rehabilitation of the ESRD client, several considerations must be noted. The scale on eating must be altered in relation to being on a special diet. Most chronic illnesses especially ESRD are associated with dietary recommendations which should not be considered dysfunctional. Portions of the scale in the physical dimension and the communication scale were not found to be applicable to ESRD clients. For the most part these areas were not affected by ESRD which was also reflected in Bruinsma's (1982) study. Therefore, selected scales may be more appropriate, discussion of tool revisions time in other correlating issues. Perceptions of Satisfaction: Question II, and IIa Question II What is the degree of perceptual congruence between the client and his/her significant other regarding their satisfaction with the client's present rehabilitation? The entire discussion on the results from the satisfaction scale must be precluded by the weaknesses of 213 the scale despite the acceptable alphas computed. The individual questions representing each SIP scale are very broad. Interpretation could vary between individuals on the meaning of each area. For example, the client's present emotional behavior could imply the amount of depressive behaviors to amount of expressed overt anger. For this reason only broad inferences will be possible. The second potential weakness is in the possible responses available. The scale is limited in the ability to finely discriminate the amount of satisfaction. The "mixed" response may be apprOpriate for the types of broad questions included in this satisfaction survey since a range of activities are incorporated in each statement. The subject may have different degree's of satisfaction associated with the various components, thereby having an overall mixed level. This area will ultimately require further evaluation to determine the Components and their associated degree of satisfaction. In addition to the difficulties with interpretation, equal problems are found in comparing the satisfaction scores of this survey to the scores of other more specific scales. Recommendations will be offered later in this chapter for tool revisions. Not surprising was the finding that the ESRD dyads are fairly satisfied with the client's overall rehabilitation (2 = 3.64 for Clients; 2 = 3.73 for 8.0.), the moderate yet positive correlation (.61, p = .005) between their satisfaction scores. Speidel et a1 (1981) found similar 214 results between ESRD couples in their study. They also note that the ESRD couples sampled perceived greater satisfaction then the non-renal dyads. The perceived quality despite dysfunction is evident from nearly all the studies reviewed. Stegman et a1 (1985) used the SASS, an 11-rung self- anchoring scale, in their study and found the dialysis clients rated their satisfaction above average. Comparing their findings to the recent SASS reports from osteo- arthritic patients (2 = 5.2), and coronary by-pass patients (2 = 6.58) and the U.S. sample in general (2 = 6.6), ESRD clients have substantially higher scores. This does indicate the overall resilience and adjustment to the ESRD (Stegman et a1, 1985). The two dimensional satisfaction scores, physical and psychosocial, between the dyad members also had positive correlations. Again this indicates a moderate degree of congruence between the client and significant other. In addition, all of the questions corresponding to the areas of gainful activity, except communication and emotional behavior had positive correlations between the dyad members. The moderating variables of the clients which were negatively associated with their overall satisfaction included number of chronic illnesses and recovery time post dialysis. In addition the number of additional chronic illnesses correlated negatively to several satisfaction 215 scales: physical dimension, eating, recreation/pastimes, and home management. The satisfaction in relation to additional chronic illnesses may have been judged by the client how he/she was prior to the additional burden of ESRD. Unfortunately, the information regarding addtional health problems obtained on the sociodemographic survey was not specific enough to substantiate this conclusion. The number of additional illnesses was not found to impact the clients perceived satisfaction in Evan's (1982) study. Once again, the discrepancy between complications and actual chronic illnesses interfere with interpretation. Furthermore, the amount of recovery time had negative correlations significant at .05 with all the areas of gainful activity except communication. This may imply that these areas are the most valued and any amount of dysfunction is perceived with less satisfaction. The length of kidney disease had a postive correlation between the client's response on the satisfaction questions: eating, sleep/rest and home management. Several reasons for this association are possible. Clients, through time are able to make comparisons of where they were to where they are now. The dietary restrictions become easier to manage and more routine, thereby increasing satisfaction. The amount of time spent sleeping or resting may change as the client adjusts his/her lifestyle to a less strenuous level. Possibly, the significant other may have reduced the demands, and 216 encouraged the client to "take it easy". This would decrease the client's anxiety, facilitating satisfaction. Such a scenario would also explain the satisfaction with home management as the clients length of kidney disease increases. Unfortunately, the lack of specificity in the sociodemographics in this area impedes further assumptions from the study data. The findings in this study are similar to those of Kutner (1980), in which she found that long term clients (< 4 years) were generally more satisfied than short term clients. The sociodemographics of the significant other also provide valuable insight into their satisfaction. The one area which was found to associate with their overall, dimensional, home management and recreation/pastimes satisfaction scores was the perceived amount of information regarding the client's illness. Adequate amount of information correlated with more satisfaction in these areas. Although, there are no comparisons available to other samples, the importance of education for the significant other was noted by Rounds et a1 (1985), Matthews (1980) and Hastings (1984). Due to the lack of specific data obtained on this variable broad inference can only be surmised. The significant others may have expected dialysis to reverse the client's dysfunction. Often, they are told by the health team how effective dialysis is for survival. Not having experience with chronic dysfunction, the significant 217 other may have had higher expectations. The amount of interaction the significant other had with other dialysis dyads may also be the point of reference used for determin- ing satisfaction. Comparisons may be made to other dyads, with dissatisfaction resulting from perceived lack of information on the client's ability. Matthews (1980), found the spouses in her study requested honest answers about the client's illness. The apparent lack of trust or amount of information received will be a key point for nursing interventions. Further, the areas which were perceived with more dissatisfaction in relation to information, could have a direct impact on the role changes and responsibilities assumed fur the significant other. The crucial questions which would help to explain these correlations are: from whom does the SO receive information, was information given but not received, and how satisfied are the significant others with EEEEE 9mm quality of life. Finally, the satisfaction perceived in the clients physical abilities by the significant other was negatively correlated to the number of activities they performed in the client's care. The low but significant correlation (r = -.36, p = .03) may be interpreted and partially explain the problems associated with the chronicity of care requirements. The significant others may attribute the physical limitations as the most interfering or cumbersome facet of ESRD. This is further supported by the absence of 218 a significant relationship between activities performed and the other satisfaction dimensions. Question IIa What is the correlation between perceived congruence on the dimensions of rehabilitation, and their degree of perceived satisfaction with the client's rehabilitation status? The amount of disagreement between the dyad on their Overall SIP and Psychosocial SIP dimension Scores was correlated with the amount of disagreement between their overall satisfaction and psychosocial satisfaction scores. This denotes that the amount of disagreement between the dyad on each of those SIP scales was similar on the correlating satisfaction scales. Therefore, a relationship between the amount of dysfunction and the amount of satisfaction can be implied. The disagreement scores from the other two dimensions, physical and gainful activity, were not found to correlate between members of the dyad. Basically, these results would not be that unusual even though similar comparisons to other samples are not available. Satisfactions are determined differently between individuals (Campbell et a1 1976). The amount of perceived disruption imposed by the dysfunction on their individual trajectories may well be different (Corbin et al, 1984). In this sample the significant others and clients perceived significant dysfunction in the client's participation in 219 recreation/pastimes. Yet, the significant others were more satisfied than clients who perceived the amount of dysfunction with less satisfaction. These differences may stem from the perceived impact on their own lives. The significant others may have more satisfaction, since the clients actually experience with more intensity the loss of usual activities. Similarly, the amount of perceived dysfunction between the dyad in the client's social interaction was less from the significant others view point. Despite less dysfunction, the significant other's were more dissatisfied than the client in this area. Quite possibly the lack of client social interaction directly impacts on the social outlets for the significant other. Interestingly, the area INTERACTIONS —> TRANSACTIONS Client's between Communication Congruency identified dyad- of feelings for role significant and experiences. negotiation other' ACthD Identification bargaining. . of mutual goals. Decision to alter cgginglzg expectations of client. Personal h ' , c aracteristics Judgments l , . Hea th history Evaluation of options Current social to increase satisfaction. and family roles. Relationshi with , health carep —. Perception system. Clients current rehabilitation Current knowled e status & own satisfaction with and expectation: client's rehabilitation. Figure 5. FEEDBACK Modification of King's Theoretical Framework 225 The nursing component also needs to be added to the theoretical framework. Figure 6 is a pictorial represent- ation of King's (1981) model with the nursing component. Although not depicted the nurse also has several moderating variables which will influence his/her perceptions such as: educational background, (both formal and informal), work history, philosophical framework of nursing, and personal characteristics. The solid arrows on the framework from the nurse to each member of the dyads is meant to indicate the direct nursing relationship. Several options are avail- able to the nurse, once the initial assessment of the client and significant other is completed. The nurse may opt to interact with both members of the dyad together or individually if appropriate. Regardless, the resulting feedback from the interaction/transaction will always affect both members of the dyad. This fact must not be negated when individual interventions are chosen by the nurse. King (1981) identifies several exterior boundaries in her theory of goal attainment: Interactions occur in a two-person group, are limited to a licensed professional nurse and occur in natural environments. The first boundary is a limitation in applying her theory to an ESRD dyad. Such a limitation does not dismiss the appropriate- ness of the other interrelated concepts in Kings's (1981) theory. Rather, through continued testing of the model via nursing research, the model may be revised to include the client's significant other. 226 '7 Vi FEEDBACK Chronic Client's —> Hemodialysis Significant Other (:11th r i -> Perceptions of: )- Perceptions of: Rehabilitation Rehabilitation and satisfactions and satisfactions Judgement Judgment Evaluation of options Evaluation of options to increase satisfaction. to increase satisfaction. Action Action Decision to alter Decision to alter expectations of self. expectations of client k K —~ REACTIONS —> INTERQCTIONS -> TRANSACTIONS ‘ Communication Con ruenc for mutual g y oal settin for role Action 9 9' negotiation Decision making and Decision to intervene a::;i:;:;t bargaining. as dyad or individual. ' Judgment Impact of ESRD on quantity and quality of rehabilitation. l L. NURSE <-——- Perceptions of: ———-———> Dyad's current perceptions and areas of dysfunction between dyad. FEEDBACK Figure 6. Addition of Nursing to King's Framework 227 Summary of Nursing Implications to Practice and Education The nurse in advanced practice will be a valued member of the ESRD health team. Bringing a variety of theory based interventions and expertise in family assessment the CNS will be influential in promoting rehabilitation. Through role-modeling, consultation, collaboration and direct education, the dialysis staff will emulate the CNS creating an atmosphere conducive for transactions. The key to nursing interventions is a thorough assessment of the ESRD dyad. Awareness of satisfactions in relation to dysfunction should be incorporated into the interactional sequence of King's (1981) model. Through this assessment process the nurse will be able to make inferences to previous interactions between the dyad. Several suggestions were made throughout this Chapter regarding the need for formal and informal nursing education. In summary, the generic programs can no longer focus attention solely on acute illness. The changing health care needs will require a base knowledge of chronic illness for effective interactions. Nurses must be encouraged to advance their knowledge base through continuing education. Supportive courses in the theories of family, role, and loss would broaden the scope of nursing interventions. Finally, through continuing education, nurses will gain a greater perspective of their own perceptions and potential influence on clients/ significant other interactions. 228 Recommendations for Future Research Certain implications for further nursing research may be drawn from this study. Replication 1. Replication of this research study is recommended gmly after revisions are made to the sociodemographic and satisfaction survey. The proposed changes in these tools were outlined earlier in this chapter. 2. Replication incorporating several dialysis centers in order to obtain a larger sample size. 3. Replication using the interviewer administered SIP and Satisfaction Survey, thereby broadening the criteria for subject inclusion. This would be most appropriate in light of the number of ESRD clients with limited eyesight. 4. Replication across time with the same group would add to the findings. Such research must begin at time of diagnosis mg; with the first dialysis. 5. Replications using another chronic disease sample would provide useful information on the differences in perceptions among various chronic illnesses. Further, research using the SIP for both clients and their significant others will lend support to it's usefulness in such a manner and provide comparison for dysfunction scores. 229 Expanded Research 1. Selected dimensions and scales of the SIP could be utilized in conjunction with a more in depth satisfaction survey. The narrowed focus would permit the researcher to explore lJI more detail the moderating variables, without infringing on the subject's time. The eating scale of the SIP is not recommended for future ESRD research due to the inappropriateness of the statements. The reliability and validity of the SIP does remain stable when selected scales are solely used. 2. Each of the moderating variables provide direction to future research. Efforts to identify the critical components within each variable will support nursing interventions. 3. The perceptions of the nurse in conjunction with those of the ESRD dyad would provide a clearer picture for rehabilitation. Nurses must increase their own awareness of the impact they have on client outcomes. 4. Research should be conducted which compares and contrasts those ESRD clients who live with someone and those who live alone. It would be interesting to not only compare dysfunction and satisfactions, but examine the types of relationships to their significant other. Experimental Research Research is needed to evaluate various nursing interventions based on the significant findings from descriptive surveys. For example, different education 230 programs geared towards the significant other could be evaluated in respect to their pre and post satisfaction levels. Similarly a study designed to evaluate a group versus individual counseling for promoting optimal rehabilitation would offer useful information in designing dialysis programs. For the most part behavioral interventions have not been well studied in the ESRD population. Health Promotion in ESRD Studies are needed in which the present health promotion activities of the ESRD client and significant other are examined. Noting the relationship of additional chronic illnesses to satisfaction, lends credence for interventions for health promotion. Prior to intervening, descriptive surveys are needed to define current practices. Stressors Resulting from Incongruency Once incongruent perceptions have been identified, the resultant interactions between the dyad need to be explored. Various issues such as non-compliance, depression, and apathy, may be the result of strained interactions, thereby impeding rehabilitation. Conclusion The need for continued research in the area of ESRD cannot be overly emphasized. Investigators must not only design studies that focus on evaluation of strategies 231 offered by previous ESRD researchers but also focus on the methodological issues that arise in conducting dyadical ESRD research. The most common problems are clustered within the area of subject selection (Osberg et a1. 1980). Indeed, the major methodological weakness within this research study is also found within this area. Since the subjects in this study were obtained from only one dialysis center a number of problems were encountered. First and foremost was the inability to utilize a random sampling technique. The absence of random sampling severely limits the ability to generalize the findings outside of the actual study sample. Further, the limitations of a small sample pool were found in analyzing the data in relation- ship to key sociodemographic variables. The client characteristics were unevenly distributed within the sample, thereby limiting the ability to make comparisons. These problems could be minimized by utilizing multicenters for subject selection. Although a multi-center approach would be the optimal choice for subject selection it is not always feasible due to time, money or convenience. Therefore, investigators must take full advantage of their available pool of subjects. In order to obtain data from clients with similar key variables of interest i.e. length of time on dialysis, specific disease process, the investigator may opt to conduct an interview-administered versus a self- administered instrument. This would enlarge the potential 232 pool of clients since the ability to read and write due to deteriorating Vision was found as a limitation for a sizable portion of the available subjects for this study. The decision to utilize the interview-administered approach must be weighed upon its advantages and disadvantages. The advantages include not only the ability to enlarge the available pool of subjects but also have the following: (a) A higher response rate than self-administered, (b) pro- tection against ambiguous or confusing questions, (c) control over the order of presentation of the questions, and (d) the ability to produce additional data through observation (Polit et al. 1983). In contrast the disadvantages of the interview style include cost, lack of respondent anonymity and, are subject to interviewer biases. In addition the actual inability to read and/or write must be considered as a potential intervening variable. Utilizing the interview-administered approach in this study may have affected the research findings in several ways. First, a number of questions on the Sociodimographic Survey and the Satisfaction Survey were left unanswered thereby limiting data analysis in those areas. In addition, the Satisfaction Survey, a newly developed instrument, could have been further refined benefiting from the amount of clarification needed by the respondents. Finally, although the interview style would enlarge the sample pool, the problems associated with the inability to 233 read and/or write must be considered. Certainly, the client who is experiencing deteriorating eyesight may have greater dysfunction and a lower satisfaction than the client who had limited education. These potential differ- ences would need to be accounted for when interpreting the research findings. Despite the method selected for administration of the study instruments several other considerations should be included in the overall research design. The problems intrinsic within ESRD rehabilitation must be examined from a family perspective with emphasis on role relationships. Unlike other chronic illnesses the ESRD dyad is often subject to numerous threats in their established family and social roles. The task of identifying problems in the client's overall rehabilitation will be made easier if the investigator is able to quantify the type and number of role changes facing the dyad. Also important in the research design is the client's history of chronic illness. Through a review of the client's medical record or by the self-report method the number and type of chronic problems the client has had prior to dialysis can be identified. This information may help to differentiate between chronic complications often associated with ESRD (which may be both preventable and reversible) from those which are not associated with ESRD. Further, the amount of perceived disruption imposed by the chronic illness prior to ESRD may have provided the client 234 with additional coping skills from which to draw upon. Likewise, clients who are faced with additional chronic health problems concurrent to their ESRD may experience greater dysfunction and frustration impeding their ability in restoring an optimal life style. Finally, future researchers must be encouraged to conduct longitudinal studies in order to capture the cyclical problems know to ESRD. Such studies would ideally be geared to follow the adjustments of clients from time of diagnosis through the first three to five years of dialysis. Further, such a design would lend itself to the other design considerations previously mentioned. Unfortunately, the difficulties associated with longitudinal studies cannot be ignored. Such studies are typically expensive, time consuming and plagued with the problem of attrition. Although attrition may not appear to be a problem with a "captive" sample such as ESRD clients, the fact that many clients switch modalities can impede the ability to follow clients through the hemodialysis experience. In addition, attrition may be accentuated by the waning interest of subjects over time. In conclusion, the current interest in ESRD rehabili- tation can be attributed to both the lack of consistent research data and the financial burden of ESRD on the federal medicare budget. Health care providers are now being challenged to focus their attention in maximizing the available resources and promoting optimal rehabilitation. 235 One strategy in meeting this challange is to focus the energy of practitioners into early intervention and development of a high risk client profile. Such a profile would alert providers to those ESRD dyads who may have more difficulty adjusting to the demands of ESRD. In this study several of the sociodemographic variables were associated with greater dysfunction and less satisfaction: number of additional chronic illnesses, recovery time after dialysis, age, length of kidney disease, employment status and number of hours on dialysis. These particular characteristics have been noted in several of the research studies critiqued. Continued investigation is needed to thoroughly understand their relationship to rehabilitation. The nursing management of ESRD brings both challenges and rewards to the nurses in acute and primary care setting. In the midst of a routine and purely technical process, human interactions remain far from routine. The nurse in such an opportune position can assist ESRD dyads in achieving a mutually rewarding lifestyle. This study on perceptions will contribute to the nursing body of knowledge in both application of nursing theory and the concept of rehabilitation. King's (1981) theory did provide an integrative framework for the study questions. Although actual interactions were not measured, the degree of congruency between the dyads offered speculation on the quality of previous interactions. The end goal of interactions and 236 transactions will be congruency and satisfaction between the dyad. Perceptions as hypothesized by King (1981) are the key to understanding human interactions and transactions. In Chapter VI the research findings were presented. The description and analysis of the study sample was compared to other research samples. Implications and recommendations to nursing practice, education and research was discussed. APPENDICES APPENDIX A VERIFICATION OF RESEARCH APPROVAL 237 VERIFICATION OF RESEARCH APPROVAL MICHIGAN STATE UNIVERSITY UNIVERSITY COMMITTEE ON RESEARCH INVOLVING EAST LANSING 0 MICHIGAN 0 48824-1046 HUMAN SUBJECTS (UCRIHS) 238 ADMINISTRATION BUILDING un)nsnw April 8, 1986 Ms. Judi Daniels 26838 CR 653 Gobles, Michigan 49005 Dear Ms. Daniels: Subject: Proposal Entitled, "Perceptions of Rehabilitation by Hemodialysis Clients and Their Significant Others" UCRIHS' review of the above referenced project has now been completed. I am pleased to advise that the rights and welfare of the human subjects appear to be adequately protected and the Committee, therefore, approved this project at its meeting on April 7, 1986. You are reminded that UCRIHS approval is valid for one calendar year. If you plan to continue this project beyond one year, please make provisions for obtaining appropriate UCRIHS approval prior to April 7, 1987. Any changes in procedures involving human subjects must be reviewed by the UCRIHS prior to initiation of the change. UCRIHS must also be notified promptly of any problems (unexpected side effects, complaints, etc.) involving human subjects during the course of the work. Thank you for bringing this project to our attention. If we can be of any future help, please do not hesitate to let us know. Sincerely, / ’- Henry E. Bredeck Chairman, UCRIHS HEB/jms cc: Dr. Barbara Given MSU is an Affirmative Action/Equal Opportunity Institution 238 VERIFICATION OF RESEARCH APPROVAL BORGESS MEDICAL CENTER NURSING RESEARCH COMMITTEE REVIEW OF NURSING RESEARCH PROPOSAL APPROVAL NOTIFICATION Directions: Complete this form. Notification of the committee's action will be sent to you following the decision. Investigatoris) (l ,I>u;atcrg 57 \J . ”i . . . L ' Tltle 0f PEOJeCt ii" .1 data. A a a »'.L.>/ir;l den cht—u 7/«/ $11 'rrm ’i- 6442-.) r t] Y ; I V All“ x111 /' ,u‘ 'l'llLi" x/ (Infill! f’a'yx L. /(.. f’wv k4 Send this form to: (Nifiel’ (AddFessl The Nursing Research Committee has reviewed your request on - 365;; and has reached the following decision: I te Approved Approved with modifications v” Not approved Commentsz “it tmrmcc Signature , 9 ese c Chairperson for Review of Research Borgess Medical Center .Wt'mht’rm/ 1521 Gull Road Siilerv (If-SI Jmeph Kalamazoo. Mlchlgan 49001 Health Swem. lm'. Telephone (Mb-3833000 Namre/h. Mlt'hlgun 239 VERIFICATION OF RESEARCH APPROVAL BORG E55 1 Medical Center . ‘L 5 f7 7 . V a . ,r’) V .5 ’ ~ ‘ _‘ l .2711. LLMW/ 773:4de (LL/tho 7C4W:/ //Z""‘LZ(L“JT “,1 ' - - l 't' 9:470 [WL 77W ./L:/(‘1'1.11 aifl LXI—L1” Ill/(MAL mafia, M (fl-M LEA ‘\”‘/ unoccuwcwtwv3 «and We 4 Mail I c 1. / d . 4 , [I y- u I . 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XOIWaLLU pen, A1“, 1y$0v Gal-ac? 04.11, .02 32:1. 217—L4 " é: t—LiEe-uWWLOZ—WC 1%. 240 7 7 - /%Q/’ [414% Law gig/ILQXQC/iz 977a Wow; a» WW‘CJM : / " ' - 7 El gawk/£1150; Lfl» J4 ;/7 c7 ( («f/ix /€é\_¢ La/C’xi; (QC fl; JQH/tj if] j/w V4412”; “(Cay/o if] )4; .2/ 0 >JL71'fg/v/X24/x/ C}:X/uai1/<.U7L’YTCLL w APPENDIX B LETTER OF INTRODUCTION AND CONSENT FORMS 241 LETTER OF‘INTRODUCATION AND CONSENT FORMS PATIENT INFORMATION SHEET Overview Some studies have been conducted that are related to the effect of hemodialysis on the ability of patients to carry out their usual daily activities. Few studies have included the opinions of both the patient and his/her supportive other regarding the impact of renal failure on the patient's rehabilitation. Nurses feel that it is important to consider the needs of the patient's supportive other as well as the patient in planning dialysis programs to assist in rehabilitation. I am conducting a study to find out how both hemodialysis patients and their supportive others view the effects of kidney disease on the patient's ability to carry out daily activities and how satisfied they are with current activity levels. I would appreciate 20-30 minutes of your time to complete a general information questionnaire, a questionnaire on how you carry out your daily activities, and a satisfaction questionnaire. This study has been approved by Borgess Medical Center Research Committee and Michigan State University Human Rights Committee. 242 If you participate in this study: 1. All information will be treated confidentially. 2. You will have the right to withdraw from this study at any time with no effect on your health care. 3. Participation or nonparticipation in this study will in no way effect the health care you or your supportive other are receiving. 4. You may request a summary of the completed study, if you so desire. If you agree to participate in this study, you will be asked to identify a person with whom you live that you consider the most supportive person in your life. The individual must be over the age of 18, be able to complete the questionnaire by him-/herself, and agree to participate by signing a consent form. I will contact you at your home within the next two days to answer any questions regarding the study and to schedule an appointment to meet with you and your supportive other together. If you have any questions at any time, please feel free to contact Judi Daniels at either (616) 383-8320 or (616) 628-2490. 243 LETTER OF INTRODUCTION AND CONSENT FORMS SUPPORTIVE OTHER INFORMATION SHEET Overview Some studies have been conducted that are related to the effect of hemodialysis on the ability of patients to carry out their usual daily activities. Few studies have included the opinions of both the patient and his/her supportive other regarding the impact of renal failure on the patient's rehabilitation. Nurses feel that it is important to consider the needs of the patient's supportive other as well as the patient in planning dialysis programs to aSSlSt in rehabilitation. I am conducting a study to find out how both hemodialysis patients and their supportive others View the effects of kidney disease on the patient's ability to carry out daily activities and how satisfied they are with current activity levels. of the study I would appreciate 20-30 minutes of your time to complete a general information questionnaire and a satisfaction questionnaire. This study has been approved by Borgess Medical Center Research Committee and Michigan State University Human Rights Committee. If you participate in this study: 1. All information will be treated confidentially. 244 2. You will have the right to withdraw from this study at any time with no effect on your health care. 3. Participation or nonparticipation in this study will in no way effect the health care you or the patient are receiving. 4. You Inay request. a summary’ of the completed study, if you so desire. I will contact you at your home within the next two days to answer any questions regarding the study and to schedule an appointment to meet with you and the patient together. If you have any questions at any time, please feel free to contact Judi Daniels at either (616) 383-8320 or (616) 628-2490. 245 LETTER OF INTRODUCTION AND CONSENT FORMS INFORMED CONSENT Judi Daniels, R.N., is conducting a study to measure the effect of chronic renal failure on the patient's abilities to perform usual daily activities as viewed by the patent and his/her identified supportive other. While studies are present which describe the effect of chronic renal failure perceived by the patient, few studies are available which include the patient's supportive other. If we voluntarily consent to participate in this study, I understand that: 1. There will be a general information questionnaire, a questionnaire on daily activities, and a satisfaction questionnaire to complete by the patient and the supportive other independently. 2. This study will in no way affect the health care being delivered to the patient or supportive other. 3. All information regarding our participation will be kept confidential by the use of code numbers. No names will appear on any of the questionnaires. The questionnaires will be destroyed after the study is completed. 4. A summary of the study will be available upon request. 246 We acknowledge that: 1. We have been given an opportunity to ask questions about this study and they have been answered. 2. If we have further questions, we may contact Judi Daniels, R.N., at (616) 383-8320 or (616) 628-2490. 3. Participation in this study will in no way effect the health care delivered to the patient or the supportive other. 4. The investigator has my permission to release the information gained from this study to nursing literature. We understand that no names will be used which could identify the participants. 5. We have received a copy of this consent form. DEEE_—_-—___— I Hemodialysis Client DEE§——_-____" Significant Other DEEE_—_____—' Researcher [:1 Check this box if you would like a summary of the study. APPENDIX C SICKNESS IMPACT PROFILES 24 7 S ICKNES S IMPACT PROF ILES THE FOLLOWING INSTRUCTIONS ARE FOR THE SELF-ADHINISTERED QUESTIONNAIRE. PLEASE READ THE ENTIRE INTRODUCTION BEFORE YOU READ THE QUESTIONNAIRE. IT IS VERY IMPORTANT THAT EVERYONE TAKING THE QUESTIONNAIRE FOLLOHS THE SAME INSTRUCTIONS. INTRODUCTION TO RESPONDENT You have certain activities that you do in carrying on your life. Sometimes you do all of these activities. Other times, because of your state of health. you don't do these activities in the usual way: you may cut some out; you may do some for shorter lengths of time; you may do some in different ways. These changes in your activities might be recent or longstanding. He are interested in learning about ggy_changes that describe you today and are related to your state of health. The questionnaire booklet lists statements that people have told us describe them when they are not completely well. Hhether or not you consider yourself sick, there may be some statements that will stand out because they describe Ou today and are related to your state of health. As you read the questionnaire, think of ourself toda . Hhen you read a statement that you are sure describes ygg and is related to your health, place a check on the line to the right of the statement. For example: I am not driving my car / (026-031) If you have not been driving for some time because of your health, and are still not driving today, you should respond to this statement. On the other hand, if you never drive or are not driving today because your car is being repaired, the statement, “I am not driving my car" is not related to your health and you should 52; check it. If you simply are dFTVing less, or are driving shorter distances. and feel that the statement only partially describes you, do not check it. In all of these cases you would leave the line to the right 3?_the statement blank. For example: I am not driving my car ' (025-031) Remember that we want you to check this statement on] if you are sure it describes you today and is related to your state of health. Read'the introduction to each group of statements and then consider the statements in the order listed. Hhile some of the statements may not apply to you. we ask that you please read gll_of them. Check those that describe gyou as you go along. Some of the statements will differ only in a few words. so please read each one carefully. while you may go back change a response. ‘your first answer is usually the best. Please do not read ahead in the booklet. 248 Once on have started the 'uestionnaire it is ver im-ortant that ou complete it within one dai *. If you find it hard to keep your mind on the statements. take a short break and then continue. When you have read all of the statements on a page, put a check in the BOX in the lower right-hand corner. If you have any questions, please refer back to these instructions. Please do not discuss the statements with anyone2 including family members. while doing the Questionnaire. Now turn to the questionnaire booklet and read the statements. Remember we are interested in the recent or longstanding changes in your activities that are related to your health. (52) (S3) (54) (55) (56) (57) (58) 249 (SR-ones) PLEASE RESPOND To (CHECK) ONLY THOSE STATEMENTS THAT YOU ARE SURE DESCRIBE YOU TODAY AND ARE RELATED TO YOUR STATE OF HEALTH. l. I spend much of the day lying down in order to rest ______ (070-005) 2. I sit during much of the day __ (osz-ovs) 3. I am sleeping or dozing most of the time - day and night ______ (ass-10») 4. Ilie down more often during the day in order to rest ______ (oss-osa) 5. I sit around half-asleep ______ (065-030) 6. I sleep less at night, for example. wake up too early. don‘t fall asleep for a long time. awaken frequently ______ (069-061) 7. I sleep or nap more during the day (071-060) CHECK HERE WHEN YOU HAVE READ ALL STATEMENTS ON THIS PAGE E (59) (60) (61) (62) ’63) (64) (65) (66) (67) 250 (EB-0705) PLEASE RESPOND To (CHECK) QuLx THOSE STATEMENTS THAT YOU ARE sun: DESCRIBE YOU TODAY AND ARE RELATED To YOUR STATE OF HEALTH. l. I say how bad or useless I am. for example. that I am a burden on others (27u-oa7) 2. I laugh or cry suddenly (272-068) 3. I often moan and groan in pain or discomfort (269-069) 4. I have attenpted suicide (201-132) 5. I act nervous or restless (zen-one) 6. I keep rubbing or holding areas of my body that hurt or are uncomfortable (262-062) 7. I act irritable and impatient with myself. for exanple, talk badly about myself, swear at myself. blame myself for things that happen (273-078) 8. I talk about the future in a hopeless way (283-089) 9. I get sudden frights (273-07v) CHECK HERE WHEN YOU HAVE READ ALL STATEMENTS ON THIS PAGE E] 251 (BCM-2003) PLEASE RESPOND TO (CHECK) QuLx THOSE STATEMENTS THAT You ARE snag DESCRIBE YOU TODAY AND ARE RELATED TO YOUR STATE OF HEALTH. :68) l. I make difficult moves with help, for example, getting into or out Of cars, bathtubs (168-08k) [69) 2. I do not move into or out Of bed or Chair by myself but am moved by a person or mechanical aid (170-121) :70) 3. I stand only for short periods of time (155-072) :71) 4. I do not maintain balance (105-090) :72) 5. I move my hands or fingers with some limitation or difficulty (152-061.) :73) 6. I stand up only with someone's help (165-100) :74) 7. I kneel, stoop. or bend down only by holding on to something (171-051.) 275) 8. I am in a restricted position all the time (150-125) :76) 9. I am very clumsy in body movements (us-058) {77) lo. I get in and out Of bed or Chairs by grasping something for support or using a cane or walker (169-082) (78) ll. I stay lying down most of the time (162-113) :79) 12. I Change position frequently (In-030) :80) I3. I hold on to something to move myself around in bed (lh3-086) :81) I4. I do not bathe myself completely, for example, require assistance with bathing (310-009) 82) 15. I do not bathe myself at all, but am bathed by someone else (312-115) 83) l6. I use bedpan with assistance (292-111.) 82.) I7. I have trouble getting shoes, socks, or stockings on (305-057) 85) IB. I do not have control of my bladder ‘ (290-120) p (86) (87) (88) (89) (90) 20. 21. 22. 23. CHECK HERE WHEN YOU HAVE READ ALL STATEMENTS 252 (CONTINUED FROM PAGE 7) I do not fasten my clothing, for example. require assistance with buttons. zippers. shoelaces I spend most of the time partly undressed or in pajamas I do not have control of my bowels I dress myself. but do so very slowly I get dressed only with someone's help ON THIS PAGE (290-07») (302-070) (295-120) (300-003) (297-000) C] 253 (HM-0000)- THIS GROUP OF STATEMENTS HAS TO DO WITH ANY WORK YOU « USUALLY DO IN CARING FOR YOUR HOME OR YARD. CONSIDER" ING JUST THOSE THINGS THAT YOU DO; PLEASE RESPOND TO (CHECK) ONLY THOSE STATEMENTS THAT YOU ARE SURE DESCRIBE YOU TODAY AND ARE RELATED TO YOUR STATE OF HEALTH (91)]. (92) 2. (93)3. (94) 4. 95) S. (96) 6. (97) 7. (98) 8. I99) 9. LOO)IO. I do work around the house only for short periods of time or rest Often I am doing less of the regular daily work around the house than I would usually do I am not doing ggy,of the regular daily work around the house that I would usually do 1.3m not doing 33* of the maintenance or repair work that I would usua ly do in my home or yard I am not doing ggy of the shopping that I would usually do I am not doing ggy_of tne house cleaning that I would usually do I have difficulty doing handwork, for example, turning faucets, using kitchen gadgets. sewing. carpentry I am not doing gny_of the clothes washing that I would usually do I am not doing heavy work around the house I have given up taking care of personal or household business affairs, for example, paying bills. banking, working on budget (117-ash) (119-on») (120-006) (001-062) (106-071) (116-077) (107-069) (111-077) (115-ova) (105-000) CHECK HERE WHEN YOU HAVE READ ALL STATEMENTS ON THIS PAGE [:::] 254 (n-0710) PLEASE RESPOND TO (CHECK) ONLY THOSE STATEMENTS THAT You ARE SURE DESCRIBE YOU TODAY AND ARE RELATED TO YOUR STATE OF HEALTH. {101) l. I am getting around only within one building _ (1311-000) (102) 2. I stay within one room ______ (120-106) (103) 3. I am staying in bed more ______ (130-001) (104) 4. I am staying in bed most of the time ______ (131-103) (105) 5. I am not now using public transportation ______ (100-001) .06) 6. I stay home most of the time _ (133-000) :107) 7. I am only going to plaCes with restrooms nearby ______ (125-050) 2108) 8. I am not going into town __ (120-000) 109) 9. I stay away from home only for brief periods of tine __ (139-050) 111)) lo. I do not get around in the dark or in unlit places without someone's help (121-072) {A- __ .__——§ CHECK HERE WHEN YOU HAVE READ ALL STATEMENTS ON THIS PAGE D (111) (112) (113) :114) 1115) 1116) 117) 118) 119) 120)]0. 121)II. 122)IZ. 123)l& 124)14. L25)15- LZE)16' 255 (SI-1050) PLEASE RESPOND TO (CHECK) ONLY THOSE STATEMENTS THAT YOU ARE SURE DESCRIBE YOU TODAY AND ARE RELATED TO YOUR STATE OF HEALTH. L U O U! o o 7. 8. 9. I am going out less to visit people I am not going out to visit people at all I show less interest in othEr people‘s problems, for example. don't listen when they tell me about their problems, don't offer to help I often act irritable toward those around 111e, for example, snap at people. give sharp answers, criticize easily I show less affection I am dOIng fewer social activities with groups Of people I am cutting down the length of visits with friends I am avoiding social visits from Others My sexual activity is decreased I often express concern over what might be happening to my health I talk less with those around me I make many demands, for example, insist that people do things for me, tell them how to do things I stay alone much of the time I act disagreeable to family_members. for example. I act—spiterI,-I am stubborn' I have frequent outbursts of anger at family heaters. for example, strike at them. scream. throw things at flmm . _ I isolate myself as much as I can from the rest Of the family (020-000) (029-101) (003-007) (015-000) (007-052) (012-030) (027-003) (030-000) (039-051) (010-052) (002-050) (030-000) (023-000) (209-000) (200-119) (237-102) (127) (128) (129) (130) 17. I8. 19. 20. 256 (CONTINUED FROM PAGE 11) I am paying less attention to the children I refuse contact with family members. for example. turn , away from them ~ I am not doing the things I usually do to take care Of my children or family I am not joking with-family members as I usually do (230-000) (250-115) (202-070) (255-003) CHECK HERE WHEN YOU HAVE READ ALL STATEMENTS ON THIS PAGE 257 (A-0002) PLEASE RESPOND TO (CHECK) QNLX THOSE STATEMENTS THAT YOU ARE SURE DESCRIBE YOU TODAY AND ARE RELATED TO YOUR STATE OF HEALTH. 131) l. I walk shorter distances or stop to rest often (050-000) I32) 2. I do not walk up or down hills (000-050) L33) 3. I use stairs only with mechanical support, for example. handrail, cane, crutches (002-007) -34) 4. I walk up or down stairs only with assistance from someone else (000-070) .35) 5. I get daround in a wheelchair . (057-000) 36) 6. I do not walk at all (052-105) 37) 7. I walk by myself but with some difficulty. for example. limp, wobble, stunble. have stiff leg (003-055) 38) 8. I walk only with help from someone (053-000) 19) 9. I go up and down stairs more slowly. for example, one step at a time, stop Often - _ (O00-os0) 0) lo. I do not use stairs at all _ (001-003) L) ll. I get around only by using a walker. crutches. cane. walls. or furniture _ (007-079) I) 12. I walk more slowly - . (051-035) CHECK HERE WHEN YOU HAVE READ ALL STATEMENTS ON THIS PAGE 5 258 (AB-0777) PLEASE RESPOND TO (CHECK) ONLY. THOSE STATEMENTS THAT YOU ARE SURE DESCRIBE YOU TODAY AND ARE RELATED TO YOUR STATE OF HEALTH. 143) l. I am confused and start several actions at a time (223-000) 144) 2. I have more minor accidents, for exanple. drop things. trip and fall, bump into things (230-075) 145) 3. I react slowly to things that are said or done (223-059) 146) 4. I do not finish things I start (227-007) 147) 5. I have difficulty reasoning and solving problems. for example, making plans. making decisions, learning new things (220-000) 148) 6. I sometimes behave as if I were confused or disoriented in place or time, for example. where I am. who is around, directions, what day it is (231-113) .49) 7. I forget a lot, for example, things that happened recently, where I put things, appointments (222-070) .50) 8. I do not keep my attention on any activity for long (220-007) 51) 9. I make more mistakes than usual (225-000) 52) lo. I have difficulty doing activities involving concen- tration and thinking (217-000) CHECK HERE WHEN YOU HAVE READ ALL STATENENTS ON THIS PAGE E) __ 153) .154) 155) 156) 157) 158) 159) .60) .61) (c-07zs) PLEASE RESPOND TO (CHECK) ONLY THOSE STATEMENTS THAT YOU ARE SNBE DESCRIBE YOU TODAY AND ARE RELATED TO YOUR STATE OF HEALTH. I. 9. CHECK HERE WHEN YOU HAVE READ ALL STATEMENTS I am having trouble writing or typing I conmunicate mostly by gestures. for exanple, moving head, pointing. sign language My speech is understood only by a few people who know me well I often lose control Of my voice when I talk. for example, my voice gets louder or softer. trembles, changes unexpectedly I don't write except to sign my name I carry on a conversation only when very close to the other person or looking at him I have difficulty speaking, for example. get stuck, stutter, stammer, slur my words I am understood with.difficulty I_do not speaR clearly when I am under stress (191-070) (177-102) (179-093) (197-003) (100-003) (170-007) (170-070) (200-007) ON THIS PAGE (:1 9° 17913.).-- 82) 260 THE NEXT GROUP OF STATEMENTS HAS TO DO WITH ANY WORK YOU USUALLY D0 OTHER THAN MANAGING YOUR HOME. -BY THIS WE MEAN ANYTHING THAT YOU REGARD AS WORK THAT YOU DO ON A. REGULAR BASIS. DO YOU USUALLY DO WORK OTHER THAN MANAGING YOUR HOME? YES No -> IF YOU ANSNERED YES. 00 ON TO THE NEXT PAGE. In} IF You ANSWERED N0: (163) ARE You RETIRED? _____ _____ YES NO (160)' IF YOU ARE RETIRED. wAs YOUR RETIREMENT RELATED TO YOUR HEALTH? _____ YES NO (165) IF YOU ARE NOT RETIRED. BUT ARE NQI NORKING. Is THIS RELATED TO YOUR HEALTH? _ _ YES NO -> NON SKIP THE NEXT PAGE. 66) .67) .68) 69) 261 (w-0515) IF YOU ARE NOT WORKING AND IT IS NOI BECAUSE OF YOUR HEALTH; PLEASE SKIP THIS PAGE. NOW CONSIDER THE WORK YOU DO AND RESPOND TO (CHECK) ONLY THOSE STATEMENTS THAT YOU ARE SURE DESCRIBE YOU TODAY AND ARE RELATED TO YOUR STATE OF HEALTH. (IF TODAY IS A SATURDAY OR SUNDAY OR SOME OTHER DAY THAT YOU WOULD USUALLY HAVE OFF. PLEASE RESPOND AS IF TODAY WERE A WORKING DAY.) l. I am not working at all (100-301) (IF YOU OECIED THIS STATEIBIT. SKIP TO Tl-£ NB