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Spirituality and qulity of life in hemodialysis patients White, Rita Yim Fong 2005

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S P I R I T U A L I T Y A N D Q U A L I T Y O F L I F E I N H E M O D I A L Y S I S P A T I E N T S by R I T A Y I M F O N G W H I T E B . S . N . , The University of British Columbia, 1999 A THESIS S U B M I T T E D I N P A R T I A L F U L F I L M E N T O F T H E R E Q U I R E M E N T S F O R T H E D E G R E E OF M A S T E R OF S C I E N C E in T H E F A C U L T Y OF G R A D U A T E S T U D I E S (NURSING) T H E U N I V E R S I T Y OF B R I T I S H C O L U M B I A August 2005 © Rita Y i m Fong White, 2005 11 ABSTRACT The accuracy and efficacy of the diagnosis and the renal replacement modalities for end stage renal disease are becoming increasingly sophisticated, but the psycho-spiritual impact of the disease is still unclear. Although there were studies supporting the relationship of spirituality and quality of life in various chronic conditions, little information regarding this relationship is known for chronic hemodialysis patients. This descriptive correlational study was done to describe the spirituality and health-related quality of life of adult long-term hemodialysis patients, and to examine the relationship between spirituality and health-related quality of life in these patients. The stress, appraisal, and coping theory developed by Lazarus and Folkman (1984) served as the theoretical framework. A convenience sample of 88 subjects who received hemodialysis for over three months completed the Kidney Disease Quality of Life Short Form (KDQOL-SF™) questionnaire and the revised Spiritual Involvement and Beliefs Scale (SD3S-R) during one hemodialysis treatment session. Overall, these long-term hemodialysis patients perceived a moderately low level of spirituality. The low spirituality appeared to be related to the persistence of health problems over time and that the subjects were concerned with physiological needs rather than being focused on their spiritual life. The subjects perceived a moderately low level of health-related quality of life and were worse in physical than in mental and emotional dimensions. There was no statistical correlation between the perception of spirituality and health-related quality of life (r = . 14, p_ < .05). Patients with high scores of spirituality appeared to perceive better general health and higher energy level. The lack of correlation between spirituality and quality of life appeared to be related to the nature of the sample and the psychometric quality of the tool used to measure spirituality. Based on the findings, suggestions are made for new directions for the provision of effective health care for hemodialysis patients. It is recommended that the tool used to measure spirituality be strengthened, a random selection from a larger population in multiple hemodialysis centers be used, and the data collection be done between, rather than during dialysis treatments. A longitudinal approach would lead to a more comprehensive understanding of the relationship between spirituality and quality of life over the course of patients' experiences with chronic kidney disease. iv TABLE OF CONTENTS A B S T R A C T i i L I S T OF T A B L E S v i L I S T O F F I G U R E S v i i A C K N O W L E D G E M E N T S v i i i Chapter One: Introduction 1 Background to the Problem 1 Statement of the Problem 5 Purpose of Study 5 Theoretical Framework 5 Cognitive appraisal 6 Coping 7 Adaptational Outcomes 8 Application o f the Theory to this Study 8 Research Questions 11 Definition of Terms 11 Spirituality 11 Health-related Quality o f Life 12 End-stage Renal Disease 12 Hemodialysis 12 Chronic Hemodialysis Patient 13 Significance of the Study 13 Organization of Thesis 14 C H A P T E R T W O : R E V I E W O F S E L E C T E D L I T E R A T U R E 15 Spirituality 15 Conceptualization of Spirituality 15 Spirituality and Religiosity 22 Spirituality as a Coping Strategy in Chronic Illness 24 Health-related Quality of Life 29 Conceptualization of H R Q O L 29 Significance of H R Q O L in Chronic Illness 33 Spirituality and Health-related Quality of Life 35 Summary 41 C H A P T E R T H R E E : M E T H O D S 45 Research Design 45 Sampling Procedures 45 Data Collection Instruments 47 Spiritual Involvement and Beliefs Scale-Revised (SIBS-R) 48 Kidney Disease Quality of Life Short Form (KDQOL-SF™) 51 Recruitment and Data Collection Procedures 56 Assumptions 57 Ethical Considerations 58 Data Analysis 58 Summary 60 C H A P T E R F O U R : F I N D I N G S 62 V Characteristics of the Sample 62 Demographic Characteristics 63 Health Characteristics o f the Sample 65 Research Findings 66 Research Question 1: Regarding Level of Spirituality in Hemodialysis Patients....66 Research Question 2: Regarding Level of Health-related Quality of Life 72 Research Question 3: Regarding the Relationship between Spirituality and Health-related Quality of Life 80 Summary 83 C H A P T E R F I V E : D I S C U S S I O N , C O N C L U S I O N , I M P L I C A T I O N S A N D R E C O M M E N D A T I O N S 86 Discussion 86 Demographic Characteristics o f Sample 86 Spirituality 88 Health-related Quality o f Life 96 Relationship Between Spirituality and Health-Related Quality of Life 103 Summary 108 Limitations I l l Conclusions 113 Implications 115 Nursing Practice and Theory 116 Nursing Education 118 Recommendations for Further Research 118 R E F E R E N C E S 121 Appendix A . Spiritual Involvement and Be l ie f Scale-Revised (SIBS-R) 140 The following items are about your spiritual involvement and beliefs 140 Appendix B . Kidney Disease Quality of Life Short Form (KDQOL-SF™) 142 Appendix C. Information Letter 159 Appendix D . Information Release Form 160 Appendix E . Informed Consent Form 161 Appendix F. Characteristics o f Prevalent E S R D Dialysis Patients 164 Appendix G. Characteristics of Prevalent E S R D Dialysis Patients 165 Appendix H . N e w End-Stage Renal Disease Patients 166 Appendix I. N e w End-Stage Renal Disease Patients 167 vi LIST OF TABLES 1 Age Distribution of the Sample 63 2 Education Level of the Sample 64 3 Employment Status of the Sample 64 4 Household Income of the Sample 65 5 Length of Time on Hemodialysis of the Sample 66 6 Total Spirituality Scores (SIBS-R) o f Chronic Hemodialysis Patients 67 7 Mean Spirituality Score of Male and Female Chronic Hemodialysis Patients 67 8 SIBS-R Items and Factor Means and Standard Deviations 68 9 Correlation between SIBS-R Scores and Demographic Factors for Chronic Hemodialysis Patients 69 10 SIBS-R Scores Associating with Demographic Factors and Length of Time on Hemodialysis 71 11 Total SF-36 Scores of Chronic Hemodialysis Patients 73 12 Mean SF-36 Scores of Male and Female Chronic Hemodialysis Patients 73 13 Mean SF-36 Subscale Scores of Chronic Hemodialysis Patients 74 14 Total Kidney Disease-targeted Items Scores of Chronic Hemodialysis Patients... 75 15 Mean Kidney Disease-targeted Items Scores of Male and Female Chronic Hemodialysis Patients , 75 16 Mean Kidney Disease-targeted Items Subscale Scores of Chronic Hemodialysis Patients 76 17 SF-36 and Kidney Disease-targeted Items Mean Scores Associated with Demographic Factors and Length of Time on Hemodialysis 78 18 Association o f Gender and Age with Health-related Quality o f Life 79 19 Correlations of SIBS-R and KDQOL-SF™, SF-36, Kidney Disease-targeted Items Scores 80 20 Correlations of SIBS-R and SF-36 Subscales Scores 81 21 Correlations of SEBS-R and Kidney Disease-targeted Items Subscales Scores.... 82 22 Correlations of Social Support and SF-36 Subscales Scores 83 LIST OF FIGURES Theoretical Framework - The Stress, Appraisal, and Coping Theory (Lazarus & Folkman, 1984) Vll l ACKNOWLEDGEMENTS I would like to express my gratitude to a number of people who have guided and supported me during the development of this thesis. Firstly, I would like to thank my thesis committee, Dr. Lyren Chiu , Dr. A n n Hilton, and Dr. Fay Warnock. Their mentorship and encouragement were essential to the completion o f this thesis. I would also like to express my appreciation to Dr. Mohamud Kar im and my colleagues. Their warm support and ongoing enthusiasm for my research contributed greatly to the completion of this thesis. Special thanks are also due to the patients who took the time to complete the questionnaires. Without their responses, this project would not have been possible. Finally, I would like to express a special thanks to my husband Bruce, my family and my friends, al l o f whom were wi l l ing to share my ups and downs and to offer assistance as well as moral support. 1 CHAPTER ONE: INTRODUCTION Background to the Problem With the creation of the initial system for kidney dialysis in the 1940s, patients with end-stage renal disease (ESRD) were given a second chance at life (Bjorvell & Hylander, 1989). E S R D is an irreversible kidney disease in which the kidneys can no longer adequately remove wastes and water from the blood, and necessitates treatment with dialysis (hemodialysis or peritoneal dialysis) or renal transplantation for survival (Lancaster, 1995). In hemodialysis, an artificial kidney with semi-permeable membrane acts like the kidney - a filter through which the patient's blood circulates while non-volatile, metabolic wastes products, salt and extra fluids are drawn out and electrolytes are removed or replaced (Dunn, 1993). A n arterio-venous graft or fistula is placed, most often in the patient's forearm, to provide ready access to the vascular system for the hemodialysis that usually takes three to four hours per treatment at three times a week (Lindqvist, Carlsson, & Sjoden, 1998). Over time, there has been significant improvement in dialysis techniques, drug therapy, nutritional counseling and other general treatment enhancements. Dialysis has proven to be a successful life-sustaining therapy, and its effectiveness is judged largely by patient survival. Typically, kidney transplant candidates undergo hemodialysis while awaiting transplant, and the cadaveric organ shortage has meant that these patients must stay on dialysis longer. Those patients who are not eligible for transplant generally face lifelong hemodialysis therapy. However, studies of the survival of patients with E S R D have indicated that maintenance dialysis only approximates normal renal function (Smeltzer & Bare, 1996) and many people on dialysis are physically debilitated to the 2 point that they are unable to do much beyond caring for themselves (Ifudu, Paul, Homel & Rriedman, 1998; Ifudu, Paul, Mayers, Cohen, Brezsnyak, & Herman, 1994). Chronic dialysis patients are subjected to multiple physiological and bio-psycho-spiritual stressors and may be threatened with many potential losses and lifestyle changes that negatively influence their health-related quality of life (Korevaar, Merkus, Jansen, Dekker, Boeschoten, & Krediet, 2002). Some of the identified physiological stressors among dialysis patients include pain, discomfort, sleep disturbance, nausea, cramps, fatigue and weakness. Reported psychosocial stressors include anxiety, depression and a feeling of inadequacy. Many of these symptoms are often present continuously, may be very severe and may interfere with patients' lifestyle (Parfrey, Vavasour, Hemrey, Bullock, & Gault, 1988). Moreover, hemodialysis treatment requires adherence to fluid and food restrictions and to a multitude o f medications. Most facilities only offer dialysis treatments during the daytime, making it difficult for hemodialysis patients to maintain a normal working life or their pre-ESRD lifestyle (Tovbin, Gidron, Jean, Granovsky, & Schnieder, 2003). Mathews (1998) points out that patients on hemodialysis, like most patients with chronic illness, have many important spiritual stressors. These patients are often troubled persistently by an intractable hopelessness and a conviction that their condition wi l l never improve. Such hopelessness, in turn, can lead to excessive passivity and dependency, or sometimes, angry outbursts or self-destructive behavior (Mathews, 1998). L ike many patients suffering from chronic illness, E S R D patients often feel isolated, lonely, and demoralized (Mathews, 1998). The many hours required for participation in dialysis occupy time that might otherwise be spent working or socializing with healthy friends. The fatigue and mood disturbances, which often accompany the dialysis routine, limit the quality of social interactions. These patients are aware of the high frequency of death among fellow patients with E S R D . Such experiences can have a numbing or discouraging effect on them, leaving them with a sense of bleakness and foreboding regarding the future and their own fate. This may lead to persistent depression, suicide, or aggressive acting out behavior (Mathews, 1998). One theoretical view of coping, presented by McCubbin , Thompson and McCubb in (1996), indicates that the difference in the way patients cope may lie in the way they perceive their condition. In my clinical practice I have observed such an apparent relationship between patients' perceptions and their ways of coping. Specifically, patients with spiritual/religious expression often present in a different way from others when facing the bio-psycho-spiritual stressors of chronic kidney disease. Such patients may view these renal replacement modalities and each day o f life as a gift to help them and an opportunity to show gratitude. Other patients are vulnerable to the stressors and have difficulties in adaptation, and thus struggle emotionally as well as physically. These patients instead view the modalities as a burden to endure or a curse to bear. Recent studies of hemodialysis patients indicate that certain health-related quality o f life and psycho-spiritual factors are relatively strong predictors of survival (DeOreo, 1997; Kalantar-Zadeh, Kopple, Block & Humphreys, 2001; Parkerson & Gutman, 2000). Patel and associates (2002) found a relationship of religious beliefs with H R Q O L in hemodialysis patients. Koenig, Pargament, and Nielsen (1998) report a direct relationship between survival and religiosity/spirituality in medically i l l hospitalized older adults. The findings from a meta-analysis on spirituality and quality o f life by Sawatzky, Ratner and 4 Chiu (2005) reveal a moderate relationship between these two variables and support the theoretical notion that higher ratings o f spirituality relate to higher ratings of quality o f life. Nevertheless, this relationship did not include hemodialysis patients. Other research investigating patients' coping mechanisms with respect to religiosity and spirituality suggests that these qualities increase in times of illness (Reed, 1986a). Lok (1996) indicates that individuals who endure a chronic illness, such as chronic kidney disease, perceive different levels of health-related quality of life ( H R Q O L ) and may exhibit varying coping mechanisms in dealing with their bio-psycho-spiritual stressors throughout daily life. Smith Baldree, Pelletier Murphy and Powers (1982) investigated the overall coping mechanism of patients on hemodialysis. The most frequent coping strategies used were hoping that things would get better, praying and trusting in God, maintaining control over the situation, looking at the problem objectively, worrying, accepting the situation, and thinking through different ways to solve the problem. Thus, in chronic illness, various forms of coping mechanism are used such as spiritual, positive and negative coping mechanisms. Spirituality is seen as an avenue for people to empower themselves, to make sense out of their current situations, and to rise above them (Baker, 2003). Some research has highlighted the health-related quality of life as very low for hemodialysis patients because patients recognized their inability to control their respective treatment modality for kidney disease (Lok, 1996; Mathews, 1998; Patel, Shah, Peterson & Kimmel , 2002), it is important to know more about the spirituality that contributes to a hemodialysis patient's quality of life. Such understanding might provide information for a holistic estimate of the total burden imposed by the disease and its 5 treatment. It might also prove invaluable to new dialysis patients and may ultimately serve to facilitate successful adjustment among people on dialysis. Statement of the Problem The accuracy and efficacy of the diagnosis and treatment of E S R D are becoming increasingly sophisticated, but the psycho-spiritual impact of the disease and some of the treatment is still unclear. Although there is a rich and varied body of literature that addresses spirituality as a coping strategy in chronic illness and the role of spirituality in maintaining health-related quality of life, there are significant gaps in this literature with respect to the relationship between spirituality and health-related quality o f life for chronic hemodialysis patients. Purpose of Study The purpose o f this study is to describe the spirituality and self-perceived health-related quality of life in patients with end-stage renal failure who are receiving hemodialysis and to examine the relationship between spirituality and health-related quality of life. Theoretical Framework The theoretical framework used for this study was the coping theory constructed by Lazarus and Folkman (1984) (Figure 1). According to this theory, coping arises from cognitive appraisal of the transaction between the person and the environment. A s a result 6 of appraisal processes, coping strategies are selected from a variety of coping options, and then utilized. The fundamental consequences of both coping and cognitive appraisal are adaptational outcomes. In order to apply the coping theory to the present study, an examination of the process of coping is essential. Cognitive appraisal Cognitive appraisal consists of two components: (1) the evaluation of what is at stake in the encounter (primary appraisal); and (2) determining what coping options are available (secondary appraisal) (Lazarus & Folkman, 1984). Primary appraisal identifies whether the encounter is irrelevant (the encounter has no implication for the person's well being), benign-positive (outcome is construed as positive), or stressful. Secondary appraisal is the evaluation of the efficacy and usefulness of all coping options and available resources in order to effectively manage the threat or challenge. Person factors and the actual situation characteristics (situation factors) influence any appraisal. The person factors of beliefs and commitments determine what is important to well being in a given encounter. Commitments are an expression of what is important to people, and they underlie the choices people made. Beliefs are preexisting notions about reality that shape a person's perception of his or her environment and the understanding of its meaning. There are two types of beliefs, specific and general, that serve as a basis for hope and sustain coping efforts in the face of the most adverse conditions. Specific beliefs engage only in specific situations where a relevant psychological or physical stake is at risk. General beliefs, being recognized as existential beliefs by Lazarus & Folkman (1984), are defined as faith in God, fate, or some natural order in the universe. The purpose of which is to enable people to create meaning out of 7 life, even out of damaging experience, and to maintain hope in difficult circumstances. Lazarus and Folkman did not mention spirituality in their theory, but spirituality was implied when existential beliefs were defined. Coping Lazarus and Folkman (1984) define coping as " . . . constantly changing cognitive and behavioral efforts to manage specific external and /or internal demands that are appraised as taxing or exceeding the resources of the person" (p. 142). Coping depends on the resources available to the person and the constraints that impede it. These resources include health and energy; existential beliefs and commitments that have a motivational property that can help or sustain coping; problem solving skills; social skills; social support; and material resources. Although Lazarus and Folkman did not mention spiritual coping in their theory, they emphasized meaning-making and hope-seeking actions, which imply spiritual coping, as part of their definition of existential beliefs. According to Lazarus and Folkman's (1984) theory, coping serves two functions: 1) Problem-focused coping manages or alters either the threat itself or obstacles within the environment or the person, or both. This includes cognitive problem solving and decision-making, interpersonal conflict resolution, information gathering, advice seeking, time management and goal setting, as well as problem-orientated behaviors such as following medical therapy; 2) Emotional-focused coping serves as a palliative function attempting to handle or regulate the distressing emotional responses related to the situation. This form of coping is more likely to occur when there has been an appraisal that nothing can be done to modify harmful, threatening, or challenging environmental conditions. This includes cognitive efforts that change the meaning o f a situation without 8 changing the environment through the use of techniques such as cognitive refraining, social comparations, minimization, or looking on the bright side of situations (Lazarus & Folkman, 1984). Adaptational Outcomes According to the theory, the prime importance of the appraisal and coping process is that it affects adaptational outcomes. Lazarus and Folkman (1984) identify three basic kinds of outcomes: 1) Social functioning in work and social l iving is defined as the ways the person fulfills his/her various roles, as satisfaction with interpersonal relationships, or in terms of the skills necessary for maintaining roles and relationships; 2) Morale or life satisfaction is concerned with how people feel about themselves and their condition of life and is translated into the general mood or affect, this includes the depressive system, anxiety, as well as psychological well being; 3) Somatic health is concerned with emotional well-being such as general mood, presence of pain, perceived energy level and general health perception. These basic outcomes (physical, mental and social well being) are the essential elements of quality o f life as captured in the World Health Organization (WHO) definition of health (1998), that people use to evaluate and cope with the stresses of living. Application of the Theory to this Study Delineating from the theory, the diagnosis of E S R D and the symptoms that result from the disease and treatments (situation factors) are assumed to be psychological and physiological stressors. The coping process draws on the person factors of belief and commitments, and is the stressed person's attempt to restore equilibrium by balancing or adapting to the stressors. Coping resources are those inherent resources or attributes that enable individuals to handle stressors more effectively. Among the available set o f coping resources, those that have a spiritual connotation or component - such as existential beliefs or spirituality - may serve as spiritual coping resources. That is, spirituality may be a way of keeping the E S R D diagnosis in perspective. Spirituality is conceptualized as spiritual involvement and beliefs (Hatch, Burg, Naberhaus, & Hellmich, 1998). For individuals coping with E S R D , spiritual beliefs can provide a means of drawing on intrapsychic strength, as well as a sense of transcendence, meaning and purpose. Spiritual involvement can serve as spiritual coping strategy. The present study was conducted to explore how well these patients were able to integrate spirituality into the experience o f coping with E S R D that would lead to the adaptational outcomes as measured by self-perceived health-related quality o f life. 10 APPRAISAL -< PERSON Commitments Beliefs (Spiritual Beliefs) SITUATION ESRD (Long-term Hemodialysis) COGNITIVE APPRAISAL Primary Appraisal (What is at stake) Irrelevant Stressful Benign-Positive 1 I Harm/Loss Challenge Threat Secondary Appraisal (Coping Options) COPING RESOURCES (Spiritual Beliefs) COPING CONSTRAINTS / COPING STRATEGIES (Spiritual Involvement) OUTCOMES (Health-related Quality of Life) Figure 1. Conceptual Framework for the Study Adapted from The Relationship of Uncertainty, Control, Commitment, and Threat of Recurrence to Coping Strategies Used by Women with Breast Cancer (p.40) by B . A . Hilton, 1989. Journal of Behavioral Medicine, 12 (1). 11 Research Questions The following research questions all pertaining to adult patients with chronic kidney disease ( C K D ) receiving hemodialysis, include: 1. What is their level of spirituality? 2. What is their level of self-perceived health-related quality of life? 3. What is the relationship between spirituality and self-perceived health-related quality o f life? Definition of Terms Spirituality Spirituality is a complex and multidimensional part of the human experience that encompasses the cognitive (philosophical), experiential (emotional) and behavioral aspects of experience. The cognitive aspects include the search for meaning, purpose and truth in life, and the beliefs and values by which an individual lives. The experiential aspects involve feelings of hope, spiritual love, interconnectedness, transcendence, inner peace, comfort and support. The behavior aspects involve the way a person externally manifests individual spiritual beliefs and inner spiritual state either through religion or through a relationship with the divine or nature. In this study, spirituality is conceptualized in terms of spiritual involvement and beliefs (Hatch et a l , 1998). Spiritual involvement and beliefs encompass four dimensions: (1) The core spirituality dimension addresses the individual's evolving beliefs and internal beliefs and the growth of those beliefs, and the connection, meaning, faith, involvement and experience that are consistent with their belief in an external 12 power; (2) The spiritual perspective/existential dimension addresses the awareness of interconnectedness and transcendence in daily life; (3) The personal application/humility dimension addresses the positive potential in all aspects of life for the application of spiritual principles in daily life; and finally (4) the acceptance/insight dimension addresses an individual's insight into futility of focusing attention on things that cannot be changed. Health-related Quality of Life H R Q O L is a multidimensional, patient-centered concept encompassing physical health and symptoms, functional status, mental well-being and social functioning. It is subjective and reflects the impact of a disease from the person's perspective rather than that of the professional or caregiver, and is dynamic in that it may change with time or disease progression. End-stage Renal Disease End-stage renal disease is an " irreversible kidney disease causing chronic abnormalities in the internal environment and necessitating treatment with dialysis or renal transplantation for survival" (Lancaster, 1995, p.76) Hemodialysis Hemodialysis is a procedure that uses an artificial kidney with a semi-permeable membrane to act like the kidney, a filter through which the blood circulates while non-volatile, metabolic wastes products, salt and extra fluids are drawn out and electrolytes are removed or replaced (Dunn, 1993) 13 Chronic Hemodialysis Patient A chronic hemodialysis patient: is a person with end-stage renal disease who requires repetitive hemodialysis as renal replacement therapy for three months or more. Significance of the Study There is evidence to suggest that health-related quality of life is a central concern for E S R D patients regardless of treatment modality. This study represents an exploration into the perceptions about spirituality and health-related quality of life of adult patients with chronic renal failure receiving hemodialysis. Because the perspective of this group of patients themselves has received little attention in the past, the study may provide new information about the perspective of E S R D patients. The findings w i l l also provide a picture of how these patients actually cope with their illness through spirituality in their daily lives and how they perceive their quality of life. Nurses and health care professionals need to have better knowledge of the spiritual dimension of life of these patients in order to view the situation more holistically. Individualized and appropriate nursing care and improvement of dialysis services could then be planned accordingly. In addition, it is the aim o f this researcher to make a contribution to the body of nursing knowledge concerning spirituality and health-related quality of life. To date, there is a paucity of research that examines the relationship between spirituality and quality of life in hemodialysis patients. A s an initial research endeavor, this study would make it possible to suggest additional areas for further nephrology nursing research that would address the health care concerns of this unique population. 14 Organization of Thesis This thesis is comprised o f five chapters. In Chapter One, the background to the problem, problem statement, purpose, theoretical framework, research questions, definitions, and the significance of the study were introduced. In Chapter Two, a review of selected literature w i l l be presented under two major concept headings; (1) spirituality and (2) health-related quality of life. In Chapter Three, a description of the research methods used in the study, including the research design, sampling procedure, data collection instruments, recruitment and data collection procedures, assumptions, limitations, ethical considerations, and data analysis w i l l be addressed. In Chapter Four, a description of the study sample and the research findings w i l l be presented. Finally, the discussion of the research findings, summary, conclusions, implications for nursing practice, and recommendations for further research w i l l be presented in Chapter Five. 15 CHAPTER TWO: REVIEW OF SELECTED LITERATURE In this chapter, a review of literature w i l l be organized into three sections. The first section addresses the conceptualization of spirituality, spirituality and religiosity, and spirituality as a coping strategy in chronic illness. The second section addresses the conceptualization of health-related quality of life (HRQOL) , and the significance of H R Q O L in chronic illness. The third section addresses the relationship between spirituality and H R Q O L . Since there is little research that has explored spirituality and H R Q O L in chronic hemodialysis patients, literature addressing these two concepts in conditions other than kidney disorders w i l l also be presented. Spirituality The discussion o f spirituality in this section is divided into three sections: conceptualization o f spirituality, spirituality and religiosity, and spirituality as a coping strategy. Conceptualization of Spirituality Spirituality is derived from the word 'spirit ' , a Latin word meaning 'breath', which suggests a broad concept that animates and gives life. Neuman (1995) believes the spirit controls the mind and the mind (consciously or unconsciously) controls the body. Watson (1988) equates an individual's spirit with soul and higher sense of self. Soul is conceptualized as a transcendent aspect of human existence that possesses the human body and exists through time and space. Whereas the physical body remains in one place, the soul/spirit, through feelings and the mind can be located beyond the confines of the body (Watson, 1988). The concept of soul/spirit refers to the inner essence o f self-associated with an expanded self-awareness, higher consciousness, inner strength and a power to extend human capacities. In an earlier work, El l i son (1983) suggests that, "it is the spirit o f human beings which enables and motivates us to search for meaning and purpose in life, to seek the supernatural or some meaning which transcends us, to require mortality and equity. It is the spirit, which synthesizes the total personality and provides some sense of energizing directions and order. The spiritual dimension does not exist in isolation from our psyche and soma, but provides an integrative force" (p. 331-332). Thus, the spirit is the vital life force that motivates people (Golberg, 1998) and influences their life, health, behavior and relationships (Stuart, Deckreo, & Mandle, 1989). Spirituality has been defined in numerous ways by many different disciplines, with significant variations found within the same discipline. For example, in nursing theorist Neuman's systems model (1995), spirituality is described as an innate variable that is a component of an individual's basic structure, health, and stability. The interrelationship between the spiritual variable and others (bio-psycho-social-development) creates the positive or negative effects on spiritual well-being. Moreover, highly developed spirituality supports optimal wellness in humans. In Watson's framework, spirituality is described as a possession of human beings, enabling self-awareness, heightened consciousness, and providing the strength to transcend the usual self. The human spirit is regarded as the most powerful force in human existence and the source behind striving for self-transcendence through spiritual evolution and the achievement of inner harmony. Nurses practicing within this 17 framework promote harmony of mind, body, and spirit, regardless of the external health problems, or life circumstance of the person (Watson, 1988). Rogers uses the definition of integrality as the basis for the mutual process of spirituality (Malinski , 1994). Integrality is the context for the "process of continuous change from lower to higher frequency wave patterns" and for " the continuous innovative, unpredictable, increasing diversity of human and environmental field patterns" (Rogers, 1990, p. 8). Within the Rogerian model, spirituality can therefore be understood as a pandimensional awareness of the mutual human/environmental field process (integrality) as a manifestation of higher frequency patterning (resonancy) associated with innovative, increasing creative and diverse (helicy) experiences (Malinski, 1994). Smith (1994) identified four dimensions of spirituality that were congruent with Rogers' Mode l of the Science of Unitary Human Beings: meaningfulness of life; positive potential of all aspects of life; awareness of the interconnectedness of life; and the beneficial nature of contact with a transcendent dimension (p.37). According to Rogers (1990), human beings are energy fields integral with environmental fields in continuous mutual process and innovative change. This mutual process can be manifested as patterns of spirituality. Spirituality is a way of experiencing the world through an awareness of a transcendent dimension characterized by the four factors as defined by Smith (1994). Dossey, Keegan, and Guzetta (2000) defined spirituality as " the essence of our being, which permeates our living and infuses our unfolding awareness of who and what we are, our purpose in being, and our inner resources; and shapes our life journey" (cited in Hardin, Hussey, & Steele, 2003, p.43). The dimensions of spirituality have been 18 conceptualized as connectedness with the Absolute, nature, others, and self (Dossey, et al., 2000). Connecting with the Absolute is a relationship with a Being greater than one's self, yet a part of the self. Connecting with nature is an understanding of the interconnectedness o f the earth and living creature. Connecting with others is the spirituality of the self through interpersonal relationships. Spiritual connection with self is awareness of who and what we are now and what we are becoming (Hardin, et al., 2003). The spirit or the essence of one's being has been described as the core or center of life; it is that which permeates al l o f living, giving meaning to life's journey and existence. A personal criticism of these established nursing theories is that they address the notion of spirituality from an implicit rather than on explicit stance. The National Institution for Health Research (NLHR) panel defines spirituality as "the feeling, thought, experiences, and behaviors that arise from a search for the sacred. The term 'search' refers to attempts to identify, articulate, maintain, or transform. The term 'sacred' refers to a divine being or Ultimate Reality or Ultimate Truth as perceived by the individual" (Larson, Sawyers, & McCul lough, 1998, p.21). Thus, spirituality involves a person's subjective spiritual experience associated with religious practices and beliefs although it can also exist in isolation from religion. Sawatzky and associates (2005) conceptualize spirituality as a relationship with the sacred and is associated with an existential search regardless of whether or not these experiences are mediated by religion. Therefore, the explicit measures of spirituality must reflect existential, relational and transcendent attributes of spirituality. According to the integrated reviews of the concept of spirituality by Anandarajah and Hight (2001), and Chiu , Emblen, Hofwegen, Sawatzky and Meyerhoff (2004), 19 spirituality is recognized as having three distinct aspects: cognitive, experiential and behavioral aspects. The cognitive or philosophic aspects include the search for meaning, purpose and truth in life and the beliefs and values by which an individual lives (Anandarajah & Hight, 2001). Benzien, Norberg, and Saveman (1998) defined spirituality as a person's need to find the answers to ultimate questions about the meaning of life, illness, and death. O'Connor, Meakes, McCarroll-Butler, Fadowsky and O ' N e i l (1997), in their study on spirituality in palliative care, defined spirituality as meaning making, making the most of life now, and making sense of life. In Chiu 's (2000) study on the lived experience of spirituality in Taiwanese women with breast cancer, spirituality was focused on the meaning in day-to-day lives. The findings are in accordance with the study by Walton (1999) and Walton and Clair (2000) on spirituality of patients recovering from an acute myocardial infarction as the discovery of meaning and purpose as essential components of spirituality. Fryback and Reinert (1999) described spirituality as a personal journey to discover meaning and purpose in life. In this journey, an individual learns to face fears (Sherman, 1996), to deal with the unknown (Burkhardt & Nargai-Jacobensen, 1994), to face death (Fryback, 1993), to love, forgive and to comfort others (Ross, 1997). Thus spirituality, a quality that goes beyond religious affiliation, is the effort exerted by individuals as their inspiration, reverence, awe, meaning and purpose, regardless o f their belief or lack of belief in a supreme deity. The psychiatrist Victor Frankl (1984) called this a search for existential meaning. Both Frankl (1984) and the philosopher Mart in Heidegger (1962) called this a constant lack of totality, a perpetual overhanging of unfinished business, which only finds end with death (cited in Hardin, etal . , 2003, p.44). 20 The experiential and emotional aspects of spirituality involve feelings of hope, love, connection, inner peace, comfort and support (Anandarajah & Hight, 2001). These are reflected in the quality of an individual's inner resources, the ability to give and receive spiritual love, and the types of relationships and connections that exist with self, the community, the environment and nature, and the transcendent (e.g. power greater than self, a value system, God, cosmic conscious). Smith (1995) indicated that spirituality includes awareness of the tragic self with self-redefinition and the release from self-defined limitations. Relationship with others involves a sense o f community (Sherman, 1996), compassion (Sherman, 1996), altruism (Sherman, 1996; Smith, 1995), and giving the gift o f self (Walton, 1999). Chiu (2000) described this relationship as sharing with and helping others. Hungelmann, Kenkel-Rossi, Klassen and Stollenwerk (1996) defined spirituality as "a sense of harmonious interconnectedness between self, others/nature, and an Ultimate Other which exists throughout and beyond time and space. It is achieved through a dynamic and integrative growth process which leads to a realization of the ultimate purpose and meaning of life"(p.263). The behavior aspects of spirituality involve the way a person externally manifests their spiritual beliefs and inner spiritual state (Anandarajah & Hight, 2001). Many people find spirituality through religion or through a personal relationship with the divine. Others however may find it through a connection to nature, through music and the arts, through a set of values and principles or through a quest for scientific truth. Sherman (1996) conceptualized spirituality as awareness of human-environment integrality. A relationship with the divine involves a religious relationship with God (Coleman & Holzemer, 1999; Mickley , Pargament, Brant & Hipp, 1998), religiosity (Forbes, 1994), 21 belief (Sherman, 1996), faith (Walton, 1999), religious belief expression (Smith, 1995) and religious practice (Tongprateep, 2000). Sherwood (2000) indicated that spirituality encompassed belief structure and faith. Potts (1996) believed spirituality is the search for one's ultimate significance. The behavioral aspects of spirituality cover a broad spectrum of behavior. Hatch and associates (1998) include cognitive and behavior aspects when defining spirituality. They conceptualize spirituality as spiritual involvement and beliefs and define spirituality as search for meaning and purpose in life. They hypothesize that an individual's action is a very important indicator of their spiritual status, and the actions focus on either the internal effects of these actions or the application of spiritual principles in daily life. In summary, spirituality has been described in a multiplicity of ways. Spirituality is a complex and multidimensional part of the human experience. It has cognitive, experiential and behavior aspects. The cognitive aspects include the search for meaning, purpose and truth in life and the beliefs and values by which an individual lives. The experiential and emotional aspects involve feelings of hope, love, connection, inner peace, comfort and support. These are reflected in the quality o f an individual's inner resources, the ability to give and receive spiritual love, and the types of relationships and connections that exist with self, the community, the environment and nature, and the transcendent, such as power greater than self, a value system, God, and cosmic consciousness. The behavior aspects of spirituality involve the way a person externally manifests individual spiritual beliefs and inner spiritual state. Most of the researchers include more than one aspect of spirituality. 22 Spirituality and Religiosity Spirituality and religiosity are words often used interchangeably. In order to clarify the meaning of spirituality, a distinction between these two concepts is warranted. In previous decades the word 'spiritual' could be accurately interchanged with the word religious and everyone agreed that either word referred primarily to religious beliefs and practices. Recently the word spiritual is being used as a broad umbrella that includes awareness o f personal transcendence, personal relationships, and interpersonal communication as well as the traditional religious beliefs and practices (Burkhardt, 1989; Emblen, 1992). Spirituality then, focuses on a belief in, or a relationship with, a higher power. It is the aspect o f life that gives purpose, meaning, and direction, and which may or may not encompass religion. In defining the relationship between religion and spirituality, Pargament (1997) defines religion as "a search for significance in ways related to the sacred" (p. 32). This definition rests on a proactive, goal-oriented view of human nature. People actively seek what they consider to be significant and of ultimate concern to them. There are two dimensions in this search that are particularly prominent: the pathways taken by individuals in their search for various significant goals, and the destinations or significant goals themselves. However, not all searches for significance are religious. What distinguishes religious pathways and destinations from other human experiences is their association with the sacred (cited in Zinnbauer, Pargament, & Scott, 1999, p.907). According to the Oxford English Dictionary, the sacred refers to the holy, those things "set apart" from the ordinary, worthy of deep respect. The sacred includes concepts of God, the divine, and the transcendent. Pargament (1997) continues to define spirituality 23 as a search for the sacred. A s such, spirituality is the heart and soul of religion, and religion's most central function. Spirituality has to do with the paths people take in their efforts to find, conserve, and transform the sacred in their lives. Whereas religion encompasses the search for many sacred or non-sacred objects o f significance, spirituality focuses particularly and directly on the search for the sacred (cited in Zinnbauer, et. al., 1999, p.908). From Pargament's perspective, religion is a broader and more general construct than spirituality. I f sacred is involved in either a pathway or a destination then that search qualifies as religious. Thus religion encompasses not only the search for sacred ends (spirituality), but also the search for secular ends through sacred means (Pargament, 1997). Some authors agree that religion involves an organized entity, such as an institution with certain rituals, values, practices, and beliefs about God or a higher power, and religion also may have definable boundaries and guidelines to which individuals adhere (Horsburgh, 1997; LaPierre, 1994). Cawley (1997) argued that humans' search for meaning and purpose in life may be lost due to adherence to religious practices and beliefs. Although some individuals may express their spirituality through religious values, rituals, and beliefs, and spiritual experience can be mediated through religion (Stoll, 1989), it is agued that to belong to a religion does not automatically mean one is or wi l l be spiritual (Long, 1997). While spirituality may be related to religion for certain individuals, for others it may not be (Dyson, Cobb, & Forman, 1997; Oldnall , 1996). Hatch and associates (1998) recognize spirituality as a search for meaning and purpose in life. They also point out that spirituality is broader than religiosity and it is possible for an individual to be spiritual 24 and yet not religious, although there is much overlap between these two concepts. For example, the spirituality o f an atheist (one who denies God's existence) or an agnostic (one who is unsure of God's existence) may be centered on a strong belief in significant relationships, self-chosen values and goals instead o f a belief in God. These beliefs may become the driving force in the lives of these individuals (Burnard, 1988). In summary, spirituality is the connecting force, or integrating power, that unifies all o f life. It is what synthesizes the total personality and provides energizing direction and order, whereas religion can be seen as encompassing the definition of spirituality with the added criterion of being part of an organized social context that involves subscription to a set of beliefs that are organized and institutionalized. Religion can also be seen as structure that may not include spirituality. Spirituality could include or not include religion. Although there is much overlap between spirituality and religiosity, for the non-believers their spiritual beliefs may focus on a strong belief in significant relationships, self-chosen values and goals instead of a belief in God. Their beliefs may become the driving force in their lives. Spirituality as a Coping Strategy in Chronic Illness Illness is defined as a holistic complex state incorporating the physical, social, emotional, and spiritual components (McGil loway & Donnelly, 1977; Neuman, 1995). Sulmasy (1999) wrote about medicine as a spiritual practice and considered illness as a spiritual event. He indicated, "Illness is a spiritual event. Illness grasps persons by the soul and by the body and disturbs them both" (p. 1003). Illness is thus in itself a stressor that may deplete the individual's resources. When the demand is perceived as 25 threatening, unpleasant or overwhelming, it requires mobilization of resources to adapt and cope with it (Roberts & Fitzpatrick, 1994). When faced with a stressful situation due to illness, individuals change the way in which they behave. They adapt their behavior to the stressful situation in a way that w i l l allow them to cope longer. Their reappraisal looks outwards, to expedients enabling practical coping mechanisms, but also inwards, where moral and spiritual resources may be found to provide back up at a time of struggle (Lazarus & Folkman, 1984). According to Mick ley and Soeken (1993), even i f the patients had never affirmed much religion in their lives, in times of crisis, they may turn to their religion/spirituality for help, as a source of hope and strength, rendering illness as a spiritual encounter. This is supported by research studies which found that spiritual support from belief in God, private/group prayers and worship were considered as helpful in adaptation to illness with diabetes (Landis, 1996), and coronary artery bypass graft surgery (Saudia, Kinney, Brown, & Young-Ward, 1991). El l ison (1983) postulates that spiritual coping strategies incorporate both the religious and existential methods of coping. El l i son and Levin (1998) indicate a connection between psychological well-being and religious involvement, and state that, "religion cognitions and behaviors, especially those centering on prayer, meditation, and other devotional pursuits, seem to be especially valuable in dealing with serious health problems (both acute and chronic) and bereavement." (p.707). Patients with an active religious commitment have been found, in multiple studies, to have an enhanced sense of self-esteem, reduced levels of psychopathology, more extensive coping resources and methods, and a more positive attitude about the illness and treatment (e.g., one which can 26 allow the refraining of the current illness into a challenge and an opportunity for self-discovery) when compared to others (Koenig, 1997). Saudia and associates (1991) and Reed (1987) assert that prayer, spiritual perspective, and religious influence are positively correlated with enhanced coping mechanisms for dealing with the stress of surgery and illness, and an overall feeling of well-being during terminal illness. Fehring, M i l l e r and Shaw (1997) found that religiosity/spirituality modified perception o f stressors, which increased spiritual well-being. Furthermore, in the absence of religion, Burnard (1988) explains that the nonbelievers, may meet their spiritual needs through their inner self, nature, arts, music, relationships, work and so on. This is supported by Burkhardt and Nagai-Jacobsen (1994) who found that spirituality is experienced through caring connectedness with self, others, Ultimate other and nature such as mountains, the ocean, expressed by preserving and protecting the world. In consequence, spirituality used as spiritual coping strategies may apply to both believers and non-believers. According to Otto (1950), confrontation of illness may render the individual, being a believer or non-believer, to realize the personal nothingness and lack of control over his/her life (cited in Baldacchino, & Draper, 2001, p.836), however, the use of spiritual coping strategies may help the individual to find meaning and purpose in illness, achieving a sense of personal wholeness by unifying the bio-psycho-spiritual perspectives. Thus, spirituality may produce a dimension where control is handed over and at the same time is shared with the transcendent, creating moral strength and detachment (Simsen, 1988; Neuman, 1995). Through a spiritual lens, psychologists have noted that religion and spirituality can be a framework that orients some people to the 27 world and provides motivation and direction for l iving (Mcintosh, 1995; Pargament, 1997). There are a number o f theoretical reasons to explain that people with religious orientation are likely to experience some health benefits. First, people who perceive health, both physical (e.g. the body as a temple) and psychological (e.g. sense of self, and meaning) as sacred are likely to treat this dimension of life with respect and care. This sense of sacredness may represent an important source of strength, meaning, and coping (Pargament & Mahoney, 2002). Second, religion and spirituality orientations can offer a sense of ultimate destinations in living. These destinations can become spiritual striving, which is empowering and can provide the person with stability, support, and direction in critical times and especially in i l l health (Emmons, 1996). Finally, religion and spirituality can offer some individuals viable pathways to sustain themselves and their spirituality in stressful situations through access to a wide array of spiritual/religious coping methods (e.g. spiritual support, meditations, religious appraisals, rites o f passage) (cited in H i l l & Pargament, 2003, p.68). Whereby the individual may find inner peace, meaning and purpose in life that may nurture individuals in their suffering (Doyle, 1992). Thus spiritual coping strategies may help the person to find meaning and purpose in illness, resulting in self-empowerment to cope with the current stress (Hi l l & Pagarment, 2003). Patients l iving with C K D must adapt to this illness and its many potential physiological, psychological and relational problems. A s they strive to adapt, concerns regarding the meaning of illness may arise. Many research studies support the idea that self perceived health status assists individuals to find meaning in illness (George, Larson, Koenig & McCul lough, 2000; O ' N e i l & Kenny, 1998). Spirituality has a documented 28 significance among individuals faced with terminal illness because it increases the awareness of their own potential mortality (Reed, 1986a). According to Otto (1950) the various stressors of illness may render the patient aware of his/her loss of power over his/her life. Consequently, irrespective of any religious affiliation, the patient may go beyond him/herself to reach a higher power to gain control over his/her life process (Baldacchino & Draper, 2001). Mathews (1998) pointed out that having a cohesive belief system might provide a uniquely comprehensive and comforting framework for understanding and assuaging the grief of losing job, health, hopes, and dreams because of the chronic illness; spirituality may help patients with chronic illness to imbue their lives with meaning and purpose. Mathews (1998) further postulate that finding a purpose to illness and suffering also leads to a lowered likelihood of self-destructive behaviors, such as alcohol use, suicide, or withdrawal from dialysis. A number of studies have shown that people frequently use faith systems or religious behaviors to help them cope with chronic renal failure. For example, Baldree, Murphy and Powers (1982) identified coping styles used by hemodialysis patients and reported that prayer and trust in God was the third most frequently used coping method among 35 patients receiving chronic hemodialysis. A replication of this study by Gurklis and Menke (1988) with 68 patients receiving hemodialysis showed that prayer and trust in God ranked as their number one coping method. Using qualitative research techniques and a longitudinal design, O 'Br ien (1982) investigated the coping patterns of patients undergoing hemodialysis and found that religious faith was positively associated with coping in terms of interactional adjustment and for preventing feelings of alienation. M o k , L a i and Zhang (2004) investigated the coping behaviors o f Chinese patients with 29 chronic renal failure and also noticed that spirituality and finding meaning in life were important coping method in dealing with their illnesses. In summary, in times of a life-threatening illness, individuals may experience disharmony of mind, body and spirit. In order to meet the demands of illness, patients may find meaning and purpose by the use of various coping strategies, common to both believers and nonbelievers. This search for meaning and purpose in life is recognized as the spiritual dimension of coping. Research identified spiritual coping strategies, which incorporate both the spiritual/religious and existential methods of coping, whereby the individual connects with the inner self and acknowledges their own strengths; relationship with others; hopefulness that things would get better; and appreciation of nature. The believers may use their religiosity as an additional way of coping with their illness as a source of strength, security and hope through various spiritual/religious practices. Thus coping with illness may be optimized. Health-related Quality of Life The literature review concerning HRQOL will be approached by presenting a review of theoretical, anecdotal, and research material which describes the concept of HRQOL for patients, followed by the significance of HRQOL as experienced by patients in various chronic illness situations. Finally, current evidence that suggests a relationship between spirituality and health-related quality of life will be introduced. Conceptualization of HRQOL Quality of life (QOL) generally refers to a summary aggregation of a broad array of life conditions and circumstances, such as environmental conditions (crowding, 30 wealth, opportunity, safety), social surroundings, physical conditions, and personal resources including mental health and life perspectives (Cella, & Nowinski , 2002). In sociological, psychological and medical contexts, some put an emphasis on normality, viewing Q O L as fulfillment of life and the possibilities to live a normal life, while others focus more specifically on mental capacity, to think clearly, to see, to love and be loved, to make decision for oneself (Kaasa & Loge, 2003). Caiman (1984), in the Gap Theory, described Q O L as the inverse relationship of the difference between an individual's expectations and their perception of a given situation. Meeberg (1993) conducted a literature review and identified four critical attributes o f Q O L : (a) feeling of satisfaction with one's life in general, (b) mental capacity to evaluate one's own life as satisfactory or otherwise, (c) an acceptable state of physical, mental, social, and emotional health as determined by the person referred to, and (d) an objective assessment by another that the person's l iving conditions are adequate and not life-threatening. In this sense, quality of life comprises both objective and subjective attributes. Whereas objective attributes most closely relate to quantity of life, the subjective state of satisfaction, addresses the quality o f life. The subjective evaluation is to measure the attributes of life's experiences directly (quality), and objective evaluation is to measure influences on life's experience (quantity) (Meeberg, 1993). The concept of quality of life (QOL) itself has emerged in recent decades as something far more than just disease-free biological functioning. Quality of life is a broader concept than personal health status; it also involves spiritual well-being. The literature covers a wide range of components, such as functional ability, including role 31 functioning, the degree and quality of social and communal interaction, psychological well-being, somatic sensations, happiness, life situations, satisfaction with life, and need satisfaction (Bowling, 1991; Goodinson & Singleton, 1989; Meeberg, 1993). The WHOQOL Group (1998) defines QOL as individuals' perception of their positions in life in the context of the cultural and value systems where they live and in relation to their goals, expectations, standard, and concerns. It involves aspects of physical health, psychological state, level of independence, social relationships, environmental factors, and personal beliefs. In healthcare as in life in general, QOL may have different meanings to different people. Despite the ongoing discussion on how to define QOL, most medicine is related to symptoms, functioning, psychological well-being and probably to a lesser extent to meaning and fulfillment (existential and spiritual issues). To study QOL in a health context, one typically narrows the field to those aspects of life quality that can be directly or at least indirectly related to one's health. Therefore, it is useful when defining health-related quality of life to begin with a definition of health. The World Health Organization (WHO) definition of health captured in 1947 the multidimensionality of health: "Health is not the absence of infirmity and disease, but also a state of complete physical, mental and social well being" (cited in Kassa & Loge, 2003, p. 12). This definition has served as the foundation for the development of multiple definitions of health-related quality of life (HRQOL), as well as measures to assess it (Cella & Nowinski, 2002). Virtually all proffered definitions of HRQOL include two core concepts: subjectivity and multidimensionality. The notion that HRQOL is subjective emphasizes the need to obtain input from the affected person and allows for both positive and 32 negative responses to illness and treatment (Holzemer & Wilson, 1995; Skevington, 1999). The multidimensional aspect of the concept is a reminder that a full appreciation of the impact of illness and treatment requires assessment of important life domains, including those not directly affected by the specific condition or treatment (Cella, & Nowinski, 2002). Mytko and Knight (1999) generated the following HRQOL definition: "The term 'quality of life' usually refers to a multidimensional construct that includes the patient's perspective of their overall quality of life and their assessment of specific components of quality of life (i.e., physical, psychological and social well-being)" (p.445). These researchers' views were also reflected in the development of the instrument to measure health related quality of life in patients with chronic kidney disease by Hay, Kallich, Mapes, Coons and Carter (1994). They referred HRQOL as how well an individual functions in daily life and his or her perceived well-being, and conceptualized HRQOL as encompassing physical, mental and social function, and well being. Health-related quality of life has been noted to change throughout disease progression. According to Johnson, McCauley and Copley (1982), end stage renal patients' HRQOL varied as a result of disease status. In their study, HRQOL was compared among four groups of patients with ESRD. Patients with a failed transplant had significantly lower HRQOL scores on four of the five measurement scales than patients with successful transplants, those who were awaiting transplants, and those who were receiving hemodialysis. Further changes in HRQOL in disease trajectory were reported by Morris and Sherwood (1987). They found that HRQOL in terminal cancer patients 33 was reduced before the last 12 weeks of life and again during week 7 and 10 before death. In summary, HRQOL refers to how well an individual function in daily life and his/her perceived well being. Adhering to the World Health Organization's multidimensional definition of health, HRQOL is conceptualized in the present study as encompassing physical, mental and social function, and spiritual well being. It is dynamic in that it may change with time or disease progression. Significance of HRQOL in Chronic Illness In the traditional biomedical model, which is oriented toward disease and measures of disease process, most of the information required to diagnose and treat the medical condition can be identified in the laboratory, and successful intervention occurs when a disease is eradicated. However, finding and fixing disease does not necessarily lead to the best patient outcomes. There may be occasions in which diagnosis does not contribute to improved life expectancy or quality of life. With an increasing prevalence of chronic diseases and the focus of health care expanding from adding years to life to adding life to years, QOL studies could be used to supply information about the progression of a disease and its impact on patients' lives. Chronic diseases typically have multiple causes. Most people who have one chronic condition typically have other chronic diseases as well. In contrast to acute conditions that last a brief interval of time, most chronic conditions are gradual processes usually not cured. The realization that many therapeutic procedures have the potential to cause unpleasant side effects has emphasized the fact that it is not the cure and survival alone that are important. As a result, patients must adapt to their disease and psychological or 34 social factors are o f key importance. Patients' interpretation of the condition and adaptation to the problem cannot be ignored. Subjective H R Q O L is thought to characterize the interaction between the circumstances and experiences associated with illness and patients' personal values and expectations (Anderson, McFarlene, Naughton, & Shumaker, 1996). This is a valuable endeavor because the very same disease process can have quite different effects on different people. Ben Zur, Rappaport, Ammar, and Uretzky (2000) indicate that the weaker association between H R Q O L measures and clinical conditions are acceptable because subjective measures are more responsive to, and congruent with, aspects of patients' evaluation, perception, interpretation, and processes of adaptive coping with illness. H R Q O L is associated with clinical outcomes for a variety of patient populations and is increasingly recognized to play a key role in determining survival among people with severe illness (Gijsen, Hoeymans, Schellevis, Ruwaard, Satariano & van den Bos, 2001; Peters, 2001). The patient's subjective perception o f well-being is associated with treatment outcomes - directly or indirectly impacting such things as treatment compliance, program follow-through, and satisfaction with care, and in some circumstances duration of survival (Komblith, Thaler, Wong, Vlamis, Lepore, Loseth, Hakes, Hoskins, & Portenoy, 1995; Lakusta, Atkinson, Robinson, Nation, Taenzer, & Campo, 2001; Weaver, Patrick, Markson, Martin, Frederic, & Berger, 1997). Therefore, how well the individuals perceive their quality of life is likely to have major influence on the treatment outcomes. 35 Spirituality and Health-related Quality of Life Based on a literature review examining the relationship between spirituality and quality of life, Mytko and Knight (1999) describe two models that specifically relate to the multidimensional aspect of their definition of quality of life. "Models of multidimensional quality of life have included a religiosity and spirituality domain. The religiosity and spirituality domain, however, has been conceptualized either: (1) as an independent component of quality of life; or (2) as an overarching personal life perspective; or (3) a world view which influences al l quality of life domains (e.g., physical, functional, emotional)" (Mytko & Knight, 1999, p.445). Within this conceptual approach, spirituality can be seen as a concept that is predictive of quality of life, but that remains distinct from other related concepts such as physical, social and psychological well-being. Studies indicate that spiritual well being, can promote psychological adjustment, a sense of well-being in the presence of disease or negative life events, decreased depression and anxiety, increased psychological well-being, and growth in people with serious illness (Coleman & Holzemen, 1999; Simoni & Cooperman, 2000; Young, Cash-well & Scherbakova, 2000). Mart in and Sachse (2002) studied the spiritual perspectives and spiritual well-being of women who had a functioning kidney allograft 18 and 24 months after receiving a first kidney transplant. These subjects had scores indicating a high level of spirituality with the mean score ( M = 102.11, SD = 16.32) being approximately 85% of the maximum Spirituality and Wel l Being (SWBS) score. The authors suggested that the reason for these female kidney-transplant recipients' high levels o f spirituality might be related to their survival from the life-threatening 36 experiences of E S R D and kidney transplantation. In the other study, Tanyi and Werner (2003) studied the impact of spirituality and self-perception of health in women on hemodialysis, and found a moderately high mean S W B S score ( M = 91.5, SD = 16.84) that was 76% of the maximum S W B S score. The authors postulated that this finding might be related to the fact that substantial proportions of the sample were African Americans and Baptist, and previous work had documented the contribution of spirituality to African Americans (Coleman & Holzemer, 1999; Levin, Taylors & Chatters, 1994; Sowell, Moneyham, Hennessy, Guillory, Demi, & Seals, 2000). In critical illness, however, individuals may attend to their physiological needs rather than spirituality. A study by Hardin and associates (2003) examined spirituality as integrality among chronic heart failure (CHF) patients by using the original Spirituality Involvement and Beliefs Scale (SUBS, 39 items). Individuals in later stages of C H F scored significantly low on the SEBS. The authors postulate that individuals with late stage heart failure might be more concerned with physiological needs such as breathing rather than being focused on their spiritual life. Loosing focus on one's spiritual aspects in life during advanced stages of a terminal illness may be lack of hope, or a shift in focus to the family (Hardin et al., 2003). While spirituality has been found to be an important and unique component in how patients cope with serious and chronic illness, this is also cited by respondents as being important to their quality of life. There are studies which indicate that religious commitment, including worship attendance, prayer, study o f sacred scriptures, and participation in a spiritual community, is associated with many positive health benefits, including improved prevention and treatment of mental, physical, and addictive 37 disorders; enhanced quality of life; and prolonged survival (Levin, & Schiller, 1987; Mathews, 1997). Meisenhelder & Chandler (2000) examined how spiritual practices affect health status in elderly Native Americans. The findings confirmed the spiritual dimension of health that the more faith a person has and the more spiritual practice (e.g. prayer, meditation) a person takes part in, the more likely a person is to have a higher self-perceived overall health status. Beery, Baas, Fowler and A l l e n (2002) found that spirituality scores predicted 24% of the variance in global quality of life among 58 people with heart failure being treated medically or by transplant. They further found that spirituality and religious practices were separate concepts. Existential well being had a slightly stronger relationship with global quality o f life than did religious well-being. Essentially both of these studies concluded that spirituality is a personal expression that has an important effect on quality of life among those experiencing heart failure. Mathews (1998) notes that religion and spirituality are resources beneficial to physical and emotional health and, as such, should be supported as adjuncts to traditional medical care. This opinion is validated by other researchers who found that religious involvement and spiritual well-being are associated with high levels of H R Q O L in persons with cancer (Brady, Peterman, Fitchett, M o , & Cella, 1999; Cotton, Levine, Fitzpatrick, Dold , & Targ, 1999; Fryback, & Reinert, 1999; Gioiel la , Berkman, & Robinson, 1998; Mathews, Larson, & Barry, 1993; Ri ley et al., 1998;); heart disease (Testa, & Simonson, 1996), and limb amputation and spinal cord injury (Riley et al., 1998). In one study done by Brady and associates (1999) on 1620 persons with cancer and H I V disease, they found that spirituality predicted higher H R Q O L independent of physical, emotional, and social well-being. This direct relationship between spirituality 38 and H R Q O L persisted despite declines in physical functioning. Gioiel la and associates (1998) explored the relationship between spirituality and Q O L in gynecologic oncology patients and found that older patients consistently reported higher degrees of spiritual well being and Q O L than did younger patients, and married patients consistently reported higher degrees of spiritual well being than patients who were not married. To study health-related quality of life, one typically narrows the field to those aspects of life quality that can be directly or indirectly related to one's health. Spirituality whether defined through transcendence, value guidance or religiosity can benefit health by providing meaning and purpose in life. The literature suggested that it does this in two ways. First, it may engender a positive state o f mind, which encourages healthy behavior. Mathews, McCul lough, Larson, Koenig, Sawyer and Milano (1998) found that individuals who derived high degrees o f meaning and purpose from religious commitment to a Christian organization were less likely to use alcohol and drugs, and i f they did, were less likely to engage in heavy use and suffer its social and clinical consequences. Secondly, research also suggests that even when individuals engage in risky behaviors, they may be protected from disease through the meaning and purpose engendered by devout religious commitment (Mathews et al , 1998). Larson and associates (1998) examined hypertension among religious and nonreligious smokers and nonsmokers. They found that religious smokers have an abnormal diastolic pressure. The authors concluded that religious commitment, by providing purpose in life, promotes greater peace and self-confidence, and contributes to preventing disease. In the study by Patel and associates (2002) 87% of the participants were African-American. The result o f the study indicated that men had higher depression scores, 39 perceived lower social support, and higher religious involvement scores than women. N o other parameters differed between sexes. The authors concluded that religious beliefs are related to perception of depression, illness effects, social support, and Q O L independently of medical aspects of illness. Religious beliefs may act as coping mechanisms for patients with E S R D (Patel at al., 2002). In the other study, Ri ley and associates (1998) examined the various types o f spiritual well-being among persons with physical limitations caused by disability and chronic illness and to determine i f different types of spiritual well-being are related to differences in health, quality of life, and life satisfaction. On the basis of the results of cluster analyses performed on items from two different spirituality scales, the authors identified three types o f spirituality labeled "religious", "existential", and "non-spiritual". Participants in the religious cluster were found to have the greater strength and comfort in their faith and believed that they would be fine despite illness. Participants in the non-spiritual cluster reported significantly lower levels o f Q O L and life satisfaction than individuals classified as having either religious or existential beliefs. This pattern o f results held across social, functional, physical, and emotional domains (Riley et al., 1998). Another study by Bartlett and associates (2003) who evaluated spirituality and its relationship with functional level, psychological well-being, and quality of life in persons with rheumatoid arthritis. The study result indicated that spirituality mighty facilitate emotional adjustment and resilience in people with rheumatoid arthritis by experiencing more positive feelings and attending positive elements of their lives. 40 In Sawatzky and associates' (2005) meta-analysis of the relationship between spirituality and quality of life, an extensive multidisciplinary literature search resulted in 3040 published studies that were manually screened according to pre-established criteria. Subsequently, 59 primary effect sizes from 48 studies were included in the final analysis. The majority of the sample was healthy Caucasian and African-American. The information on the other demographic characteristics was not available. A random effects model analysis of the bivariate correlation between spirituality and quality of life resulted in a moderate effect size (r = 0.34, 95% CI: 0.28-0.40), thereby providing support wherein spirituality is depicted as a unique concept that stands in relationship to quality o f life. The author, however, cautioned that in view of the large amount o f variability across the different operationalizations of spirituality and quality of life, the findings should be cautiously interpreted and compared to other studies before any reliable conclusions can be drawn. The wide diversity in the use of instruments and the moderating effects of other factors in action such as demographic factors, social factors and behavioral factors can also lead to biased estimation of the association between spirituality and quality of life (Sawatzky et al., 2005). Although there is a rich and varied body of literature that addresses spirituality as a coping strategy in chronic illness and the role of spirituality in maintaining health-related quality of life, there are significant gaps in this literature with respect to patients with E S R D . As Patel and associates (2002) indicate that spirituality may associate with patient survival and its function as coping mechanism for patients with E S R D need to be further examined. 41 In summary, in order to optimize physical health and function it is important to address the spiritual dimension. It is documented that spirituality and religiosity provide health benefits in terms of prevention, improved health status, recovery from illness, and enabling people to cope with illness and adversity. For many, spirituality offers hope, meaning and opportunity for personal growth, and may confer important benefits for chronically i l l people. The contribution of spirituality to adaptation of chronic illness appears to exert a positive influence on quality of life independently of medical aspects o f illness; however, the possible influence of spirituality on the quality of life in patients with E S R D treated with hemodialysis has not been fully assessed. Summary Spirituality is treated in the literature in a multiplicity of ways. However, despite differences in the ways that various scholars conceptualize spirituality, there is general agreement that spirituality is a complex and multidimensional part of the human experience. It has cognitive, experiential and behavior aspects. The cognitive aspects include the search for meaning, purpose and truth in life and the beliefs and values by which an individual lives. The experiential and emotional aspects involve feelings of hope, love, connection, inner peace, comfort and support. These are reflected in the quality of an individual's inner resources, the ability to give and receive spiritual love, and the types of relationships and connections that exist with self, the community, the environment and nature, and the transcendent, such as power greater than self, a value system, God, and cosmic consciousness. The behavioral aspects o f spirituality involve the way a person externally manifests individual spiritual beliefs and inner spiritual state. 42 According to Hatch and associates (1998), the actions of individuals are very important indicators of their spiritual status, and the actions focus on either the internal effects of these actions or the application of spiritual principles in daily life. Although there is much overlap between spirituality and religiosity, spirituality is often described as the connecting force, or integrating power, that unifies all o f life. It is what synthesizes the total personality and provides energizing direction and order, whereas religion can be seen as encompassing the definition of spirituality with the added criterion of being part o f an organized social context that involves subscription to a set of beliefs that are organized and institutionalized, and spiritual experience can be mediated by religion. For non-believers, their spiritual beliefs may focus on a strong belief in significant relationships, self-chosen values and goals instead of a belief in God. Their beliefs may become the driving force in their lives. In the body of literature related to the ways in which spirituality is used as a coping strategy during times of a life-threatening illness, a number of researchers have suggested that the concepts of self-transcendence and connectedness are a means for self-empowerment. Such research documents the health benefits of spirituality and religiosity in terms of prevention, improved health status, recovery from illness, and enabling people to cope with illness and adversity. The research identifies spiritual coping strategies, which incorporate both the spiritual/religious and existential methods of coping, whereby the individual connects with the inner self and acknowledges his or her own strengths; relationship with others; hopefulness that things would get better; and appreciation of nature. Studies also indicate that believers may use their religiosity as an additional way of coping with their illness as a source of strength, security and hope through various 43 spiritual/religious practices. Thus coping with illness may be optimized, according to a growing body of research; the contribution of spirituality to adaptation of chronic illness appears to exert a positive influence on quality of life independently of medical aspects of illness. Another body of literature addressed the topic of health-related quality of life, which refers to how well an individual function in daily life and his/her perceived well being. Typically, researchers adhere to the Wor ld Health Organization's multidimensional definition of health, in which H R Q O L is conceptualized (as it is in the present study) as encompassing physical, mental and social function, and spiritual wel l -being. It is dynamic in that it may change with time or disease progression. According to some research investigating the H R Q O L of E S R D patients, while the diagnosis and treatment efficacy of this disease may be successful, the psychological impact that hemodialysis may have on this population is often less clear. Studies among hemodialysis patients suggest that certain health-related quality of life and psychosocial factors are relatively strong predictors of survival and hospitalization o f E S R D patients. How well the adaptations can be made by the E S R D patient to their chronic illness is likely to have major effects on how successful treatment is, according to some studies. Some research has highlighted the health-related quality of life as very low for hemodialysis patients because patients recognized their inability to control their respective treatment modality for kidney disease. In addition, the side effects associated with the treatment modality may also create psychological and physiological stresses when such symptoms are misinterpreted as signs o f treatment failure. 44 While there were studies supporting the influence of spirituality on quality of life in various chronic conditions, little information regarding the relation between spirituality and health-related quality of life is known for chronic hemodialysis patients. It is apparent from the previous studies, however, that spirituality and health-related quality of life are important concepts and relevant to the experience of l iving with hemodialysis. Optimizing the health-related quality of life by using spirituality as a coping strategy is an essential task and is particularly relevant for patients in this situation. Coping with E S R D is a complex process as Lazarus & Folkman (1984) noted. The coping process is the attempt to restore equilibrium by balancing or adapting to the stressors. Research indicates that coping resources include spirituality, and thus suggests that personal belief systems may be a way of keeping the E S R D diagnosis in perspective. Although there is a rich and varied body of literature that addresses spirituality as a coping strategy in chronic illness and the role of spirituality in maintaining health-related quality of life, there are significant gaps in this literature with respect to patients with E S R D . Thus, based on these gaps identified in the literature, the following study addresses: the level o f spirituality; the perception of health-related quality of life; and the relationship between spirituality and health-related quality of life in hemodialysis patients. In the following chapter, the methods and procedures that were used to guide this study are described. 45 CHAPTER THREE: METHODS In this chapter the research design, sampling procedure, data collection instruments, data collection procedures, limitations, ethical considerations, and the statistical procedures used for data analysis are presented and described. Research Design This is a study that employed a cross sectional, descriptive correlational research design. Cross sectional design is used to collect data at one point in time. The main advantage of cross-sectional design is that it is economical and easy to manage although it is ideal to examine the subjects' perceptions over time. A descriptive correlational analysis was chosen for this study because levels of the chosen demographic factors, spirituality and health-related quality of life for this population were unknown and because the association between these variables needed to be explored. Sampling Procedures The target population for this study was adult patients with chronic kidney disease requiring hemodialysis and l iving in the province of British Columbia. The accessible population for this study was patients currently receiving hemodialysis in a hemodialysis center of a tertiary acute care hospital in the Lower Mainland of British Columbia. The sample consisted of 88 subjects selected through convenience sampling. The number of subjects required was calculated according to Cohen (1988) for the Pearson's Product Moment Correlation Coefficient which is generally based on random selection 46 processes and ensuring variability of each variable. A typical study in behavioral sciences and nursing has a medium effect size (Cohen, 1988; Polit & Hungler, 1999). Based on this calculation, 88 subjects were determined as the ideal sample size to test the significance of a correlation of r = .30, based on a power of .80, a medium effect size of .30, and significance level of .05, using a two-tailed test (Cohen, 1988). Subjects selected for inclusion in the study met the following criteria: 1. The subjects were currently receiving hemodialysis. 2. The subjects had experienced at least three months o f hemodialysis treatment. 3. The subjects were mentally alert to participate in the study. 4. The subjects were 18 years o f age or older at time o f investigation. 5. The subjects were able to communicate in English. 6. The subjects were residents of the province o f British Columbia. Exclusion criteria for the study: 1. The subjects who did not meet the inclusion criteria as stated above. 2. The subjects were comatose/semi-conscious, cognitively impaired with dementia/confusion, or physically too i l l with an extremely poor general condition at the time of the study. The criterion o f three months of receiving hemodialysis was established so that all subjects were at a relatively stable condition post initiation of hemodialysis. The criterion of age was established for the purpose of limiting the focus of the study to adult hemodialysis patients. Abi l i ty to communicate in English was necessary because the participant was required to respond to an English version questionnaire. 47 Data Collection Instruments Many quality of life instruments provide an overall measure of the magnitude of a person's quality of life by averaging scores across multiple dimensions that are considered to be indicators of one's quality of life. Several instruments, such as the WHOQOL-100 (WHOQOL-Group, 1998), the M c G i l l Q O L Scale (Cohen, Hassan, Lapointe, & Mount, 1996), and the F A C T - G (Cella, Tulsky, Gray, Sarafian, L inn , & Bonami, 1993), were explicitly designed with the intent to incorporate items pertaining to spirituality under a large quality of life umbrella. The theoretical model underlying these instruments is based on the assumption that the various dimensions of quality of life co-vary in a predictable and relatively strong manner in relation to overall quality o f life. Mytko and Knight (1999) agree that models of multidimensional quality of life have included a religiosity and spirituality domain, however, spirituality remains distinct from other related concepts such as physical, social and psychological well-being. This argument has been verified in the findings o f the meta-analysis on spirituality and quality of life by Sawatzky and associates (2005). The large variances in the distribution of primary effect sizes (which indicate the conceptual uniqueness o f the spirituality dimension) provides support for the notion that quality of life is best to be measured as a "unique" phenomenon that remains conceptually distinct from other dimensions that are commonly associated with, but are not components of elements of, quality of life (Sawatzky et al., 2005). In accordance with the findings of Mytko and Knight (1999) and Sawatzky and associates (2005), two separate data collection instruments were used in this study. The revised Spiritual Involvement and Beliefs Scale (SD3S-R) being developed by Hatch and 48 associates (1998) was used to measure Spirituality (Appendix A ) . The Kidney Disease Quality of Life Short Form (KDQOL-SF™) developed by Hays and associates (1994) was used to measure Health-related Quality o f Life ( H R Q O L ) (Appendix B ) , and the demographic information which was included in the KDQOL-SF™ was used to describe the sample. Spiritual Involvement and Beliefs Scale-Revised (SIBS-R) In selecting an appropriate instrument to measure spirituality, several instruments were considered based on the principle that spirituality is broader than religiosity, and it is possible for an individual to be spiritual and yet not religious (e.g., an individual who actively applies the principles of a 12-Step program but does not participate in any organized religion). Scales that limited their focus to religion likely underestimate the spirituality of certain individuals, thereby threatening the scale's validity as a measure o f the broader concept of spirituality. The most commonly used instrument: The Spiritual Well-Being Scale (SWBS) (Paloutzian & Ell ison, 1982), has been criticized for its potentially narrow focus within the Judeo-Christian religious perspective and focuses on assessing spiritual beliefs rather than actions (Ledbetter, Smith, Vosler-Hunter, & Fischer, 1991). Other available scales, such as the Religious Orientation Scale (Allport & Ross, 1967) and the Index of Religiousness (Zuckerman, Kas l , & Ostfeld, 1984), assess only religious beliefs and behaviors. Although there is much overlap between religiosity and spirituality, the two are far from synonymous (cited in Hatch, et al., 1998). The Spiritual Involvement and Beliefs Scale (SIBS), a relatively new instrument developed by Hatch and associates (1998), is used to assess a person's spirituality as a 49 search for meaning and purpose. The scale's developers sought to differentiate between religiosity and spirituality and to measure the latter. The scales measuring religiosity, a more restrictive concept, may omit factors not always expressed through traditional religious activities (Hatch et al., 1998). The STBS was developed by drawing on spiritual approaches from many faiths (e.g., Christianity, Judaism, Islam, Hinduism) and other spiritual practice (e.g., 12-step programs). The original scale with 39 items was constructed from these various perspectives, attempting to strike a balance between belief and action embodied in each principle. The authors hypothesized that an individual's action is a very important indicator of their spiritual status, and the majority of the SIBS items that address actions focus on either the internal effects of these actions or the application o f spiritual principles in daily life. This is to capture intrinsic religious orientation (Allport, & Ross, 1967), that which is truly spiritual. Items were worded to minimize cultural and religious bias, yet be easily administered and scored. The standardization sample for the SIBS was composed of 83 participants, 50 of whom were patients from a rural family practice, and the other 33 participants were family practice professionals who attended a workshop on the development of the SIBS at the March 1995 meeting of the Society of Teachers of Family Practice Medicine. The original SIBS (39 items) had internal consistency Cronbach's alpha o f .92 and test-retest reliability of r = .92 . Nevertheless, respondent feedback indicated that the elderly felt the 39-item scale was too long. The authors later shortened the scale to the best 22 items (R. Hatch, personal communication, August, 2001). The shortened 22-item scale is named the Spiritual Involvement and Beliefs Scale-Revised (SfBS-R). The coefficient alpha for the 22-item version was .92. 50 Correlation for the sum of the 39-item version with the sum of the 22-item version was .98, indicating virtual replication of total score with less respondent burden and retention of all 4 factors, (namely, core spirituality, spiritual perspective/existential; personal/humility, and acceptance/insight). Correlation o f the 22-item scale sum with the 5 religiosity-items from Duke Religion Index ( D U R E L ) was .66 to .80. This indicates that the SIBS-R captures something strongly related to religiosity, yet significantly distinct. The pilot testing of SIBS-R was done with a sample of recovering alcoholics. Approximately 5% of potential subjects declined to complete the instrument. The information of the demographic characteristics of the sample and the reasons for declining to complete the instrument were not available. The mean score was 124 for adults (n=168) and 100 for adolescents (n=25). The tool has been shown to have good test-retest reliability of .93 (n=17). The author cautioned that none of the data regarding revisions has been published. The SIBS-R version was directly obtained from the author and permission to use the instrument has been granted. The permission was also given via personal communication to alter the layout of the questionnaire or use just certain items to fit the needs of the study. The Cronbach's alpha for the SIBS-R in this study was .70. The SIBS-R consists of a 7-point Likert scale with 22 questions and with the range of possible scores of 22 to 154. The highest possible score of SIBS-R is 154, which indicates highest degree of spiritual involvement and beliefs. The SIBS-R has four subscales: Core spirituality; Spiritual perspective/existential; Personal Application/humility and Acceptance/insight. (1) The Core spirituality subscale addresses the individual's evolving beliefs and internal beliefs and the growth of those beliefs and the connection, meaning, faith, involvement and experience that is consistent with belief 51 in a higher power. For example: item 1, "I set aside time for meditation and /or self reflection"; item 8, "I have a personal relationship with a power greater than myself." (2) The awareness of interconnectedness in daily life is measured by the Spiritual perspective/existential subscale and includes items dealing with transcendent dimensions. For example: item 2, "I can find meaning in times of hardship." (3) The Personal application/humility dimension addresses the positive potential in al l aspects of life for the application of spiritual principles in daily life. For example: item 10, "When I help others, I expect nothing in return." (4) Finally, the Acceptance/insight subscale addresses an individual's insight into futility of focusing attention on things that cannot be changed. For example: item 4, "I find serenity by accepting things as they are." Kidney Disease Quality of Life Short Form (KDQOL-SF™) A variety of questionnaires have been used to access H R Q O L in patients with E S R D including both generic and disease-targeted questionnaires. Generic questionnaires have been designed to be widely applicable and often encompass the complete spectrum of health as defined by the W H O . Their generic nature enables comparisons to be made between different populations. However, when applied to a chronic disease population such as dialysis, they may be neither sufficiently sensitive nor appropriately targeted to detect small changes that clinically might be important. Conversely, disease-targeted questionnaires although potentially more sensitive to the characteristics o f a specific population are usually not applicable to other populations (Patrick & Deyo, 1989). It is recommended that a combination o f questionnaires or a questionnaire that encompasses both a generic and disease-specific component should be used. Three disease-targeted 52 questionnaires have been developed for dialysis patients: the Kidney Disease Questionnaire (Laupacis, Muirhead, Keown, & Wong, 1992), a questionnaire developed by Parfrey, Vavasour and Bullock (1989), and the Kidney Disease Quality of Life questionnaire ( K D Q O L ) (Hays et al., 1994). The first of these questionnaires is specific for hemodialysis, the second encompasses a generic component however it requires a well-trained interviewer to administer, while the third also has a generic component but can be self-administered. Despite the outstanding psychometric performance of the original version of the Kidney Disease Quality of Life questionnaire ( K D Q O L ) , some investigators may have been reluctant to use it because of its length. A shortened version of the instrument named KDQOL-SF™ was then developed, which was used in this study, is a multidimensional, reliable and validated instrument specially designed for dialysis patients and has as its generic core the 36-item Short Form Health Survey (SF-36) (Hays et al., 1994). The KDQOL-SF™ summarizes the selection and includes two parts: (a) the 43 items Kidney Disease-targeted survey which assesses the particular concerns to dialysis patients; and (b) the 36 items Short Form Health Survey (SF-36) (Ware, Kosinski & Keller, 1994; Ware & Sherbourne, 1992) that provide a generic core with a overall health rating item together with a screening item about sexual activity (Hays et al., 1994). The Short Form Health Survey (SF-36) assesses eight domains of health as a generic core that represent physical and mental health status namely, the physical functioning scale (10 items) measures limitations in activities because of health, ranging from self-care to vigorous activities. One of the role limitation scales evaluates the extent 53 to which physical health problems (4 items) interfere with doing work or other regular daily activities; the other role limitation scale measures the degree to which emotional problems (3 items) impact on role activities. The extents to which health affect social activities with family, friends, neighbors or groups are measured by the social functioning scale (2 items). The emotional well-being scale (5 items) evaluates general mood or affect, including depressive symptoms, anxiety and positive well-being. The pain scale (2 items) measures pain frequency and extent of role interference due to pain. The energy/fatigue scale (4 items) measures perceived energy level. General health perceptions (5 items) are global evaluations of health, such as feeling well or i l l . In this questionnaire, there are some items such as the pain scale that is on a 1-7 pre-coded range, which as instructed by the author, requires recoding in order to put them on a 0-100 possible range like the other items on the questionnaire (Hays, Sherbourne & Mazel , 1993; Ware & Sherbourne, 1992). Items in each of the eight domains are scored on a scale of 0 to 100, with higher scores indicating a higher level of functioning and wel l -being, and are averaged to obtain the domain score. The Kidney Disease-targeted Multi- i tem survey assesses ten domains of particular concerns to dialysis patients. The symptom/problem list (12 items) assesses the extent to which a kidney disease patient has been bothered during the last 30 days, using a five-point scale (not at al l , somewhat, moderately, very much, extremely), for soreness in muscles, pain (joint, bruising, itchy skin, shortness of breath, dizziness, lack of appetite, excessive thirst, numbness in hands o f feet, trouble with memory, blurred vision, nausea, and clotting or other access site problems. Effects of kidney disease on daily life (8 items) are assessed with the same five-point response scale with respect to restrictions on fluid 54 and dietary intake, and impact on work, performing family responsibilities, travel, lifting objects, personal appearance, and time available to get things done. The burden of kidney disease (4 items) is measured by the extent to which kidney disease interferes too much with the patient's life, takes too much of the patient's time, makes the patient feel frustrated dealing with it and makes the patient feel like a burden on his/her family. Work status (2 items) is measured by whether a person is able to work full- or part-time, is working, and the number of months worked for pay in the past 12 months. The cognitive function items (3 items) are indicators of impaired thinking. The other subscales include quality of social interaction (3 items), sexual function (2 items), sleep (4 items), and social support (2 items). There are also 2 items that assess the dialysis staffs encouragement to patients to be independent, to support the patient in coping with kidney disease, and degree of patient satisfaction with care received for kidney dialysis. The final item, the overall health rating item, asks respondents to rate their health on a 0-10 response scale ranging from "worst possible (as bad or worse than being dead)" to "best possible health" (Hays et al., 1994). Items in each of the ten domains are scored on a scale of 0 to 100, with higher scores indicating a higher level o f functioning and wel l -being, and are averaged to obtain the domain score. Hays and associates (1994) evaluated the KDQOL-SF™ instrument in a group of 165 patients with kidney disease from nine different outpatient dialysis centers. The authors reported the Cronbach's Alpha estimates for the 36-item (SF-36) health survey were also quite acceptable and ranged from 0.78 to 0.92. The mean values ranged from 32.5 (role-physical, SD = 39.7) to 69.5 (emotional well-being, SD = 20.4) on the percent of total possible (0-100) scores. The Cronbach's Alpha estimates for the Kidney Disease-55 targeted multi-item scales exceeded 0.80, with two exceptions (0.68 for cognitive function, 0.61 for quality of social interaction). The mean values ranged from 23.3 (work status, SD = 35.8) to 79.7 (quality of social interaction, SD = 16.9) on the percent of total possible (0-100) scores. In this study, the Cronbach's Alpha for the 36-item (SF-36) Health Survey was .89, and for the Kidney Disease-targeted Multi- i tem scale was 0.80. Wright, Edwards, Brazier, Walters, Payne and Brown (1998) evaluated the use of SF-36 as a measure of health-related quality of life of 660 patients with C K D and reported the internal consistency as >0.8 for each dimension except social functioning, for which the overall value was 0.72 (0.79 for transplanted patients, and 0.60 for dialysis patients). Mean values o f SF-36 ranged from 42.9 (general health, SD = 21.6) to 68.3 (emotional well being, SD = 19.1). The maximum score for each subscale was 100. Kutner, Zhang and McCle l l an (2000) used the KDQOL-SF™ to investigate the Q O L in a group of 226 newly diagnosed C K D dialysis patients. They reported internal consistency reliability estimates for the SF-36 scales ranged from 0.62 (social functioning) to 0.92 (physical functioning). The overall reliability estimates exceeded 0.7 for all scales except for social functioning and general health perceptions. The mean values of SF-36 ranged from 30.6 (role-physical, SD = 35.3) to 64.9 (social function, SD = 9.3). The internal consistency reliability estimates for the five domains of the KDQOL-SF™ scale ranged from 0.61 (effects of kidney disease) to 0.82 (dialysis staff encouragement). The estimates exceeded 0.70 for all scales except effects of kidney disease. In this study the demographic information sheet, which was part of the KDQOL-SF™ scale was used to collect relevant demographic and health data from each subject. Items pertained to the subjects' age, gender, marital and employment status, 56 educational level, country of origin, total household income, as well as causes of kidney disease and length of time on hemodialysis. N o further written permission is needed for the use of the KDQOL-SF™. Recruitment and Data Collection Procedures Participants in this study were obtained through one hemodialysis center at an acute care hospital where they obtained regular hemodialysis treatment three times a week according to the schedules set up between the patients and the hemodialysis unit. Nursing staff of the hemodialysis unit assisted in the selection of potential subjects according to the sample criteria. A contact person who was a patient care coordinator identified potential subjects and distributed the information letter (Appendix C) with the information release form (Appendix D) and described the study to them. The investigator then approached all identified subjects, who indicated that they were interested in the study, in the dialysis unit to discuss the study with them. The potential subjects were made aware that the purpose of the study was to examine spirituality and quality o f life in hemodialysis patients. In addition to a verbal explanation of the study, the subjects received an informed consent form (Appendix E) that further explained the nature, the purpose and the implications of the study. Those subjects who agreed to participate signed the consent and retained a copy of the informed consent form. Data collection was conducted during the subjects' second or third dialysis treatment of the week to avoid reports of symptoms caused by the longer interval preceding the first dialysis treatment of the week. The researcher distributed the questionnaires and collected the completed questionnaires before the end of the dialysis 57 session. A l l returned questionnaires were checked for completion, and any incomplete questionnaires were followed through to ensure a better return rate. In order to ensure clear understanding of how to answer the questionnaires, a protocol was set up to teach the subjects how to use the study tools. This was done by going through the first two questions of the health-related quality of life instrument (KDQOL-SF™) with the subjects. The subjects' attention was also drawn to the questionnaires on spirituality (SEBS-R) that was in the last section of the study tool. This was also done by going through the first two questions with the subjects because the format of the question setting in the SEBS-R was different from the KDQOL-SF™. The investigator was made available in the hemodialysis unit while the subjects were responding to the questionnaires, and answered any questions that arose about the study or the questionnaires. Assistance to complete the questionnaires was offered to the subjects upon their request because cataract and retinopathy were common relating to diabetes in patients with C K D . Assumptions For the purpose of this study, the following assumptions were made: 1. Spirituality is a characteristic of human nature. 2. Subjects are able to identify and record perceptions of spirituality and health-related quality of life in relation to their current chronic kidney disease situation. 3. Subjects w i l l respond to the questionnaire honestly and to the best of their ability. 58 Ethical Considerations Permission to conduct this study was obtained from the University of British Columbia Behavioral Research Ethics Board. A s well , permission to implement the study was obtained from the Fraser Health Research Ethics Board. Nursing staff from the hospital's hemodialysis unit assisted in the selection o f potential subjects according to the sample criteria. Each o f the nurses received a copy o f the study proposal for information. A l l of the potential subjects received an information letter outlining the purpose of the study and the nature and extent of their involvement. They were informed in writing that they were not obligated to participate in the study and could refuse to answer any questions or drop out o f the study without any effect to their nursing and medical care. Confidentiality was maintained throughout this study. The names of the subjects did not appear on the questionnaires. Each subject was assigned a code number. The informed consent forms and requests for the study results were kept separate from the data and accessible only to the researcher. Any information that might identify the subjects was not used and w i l l not be revealed in any publications. Data Analysis Raw data collected from the questionnaires were coded and entered into a computer file. Data were analyzed using the computer program Statistical Package for Social Science: Student Version 10.0 (SPSS inc., 1998). Summary and descriptive statistics of frequency and percentages were used to describe the demographic variables and as a means for presenting the variability in scale responses. Means, ranges, standard deviations, and measures of central tendency and 59 dispersion were used to describe the continuous demographic variables of age, and total household income. Means, ranges, and SD were used to analyze research questions one and two for both total scores and subscale scores. The Spiritual Involvement and Beliefs Scale-Revised (SEBS-R) yielded one total score for each subject. The KDQOL-SF™ consisted of two parts: 1) the Short Form Health Survey (SF-36) which yielded one total score and eight subscale scores for each subject; and 2) the Kidney Disease-targeted Multi-i tem survey which yielded one total score and ten subscale scores for each subject. To address question three, Pearson's product-moment correlation coefficient (r) was computed to describe and test the relationships between spirituality and health-related quality of life. A two-tailed test of significance was used because the direction of the relationship could not be determined in advance (Howell, 1987). Parametric statistics were used because they are more powerful and offer more flexibility than nonparametric test (Polit & Hungler, 1999). Given an adequate sample size, parametric statistics yield stronger results even when the assumption of normality is violated (Glass & Hopkins, 1984). In addition, since a Likert response scale is assumed to represent an equal interval continuum, and the sum of responses is considered interval data (Shelley, 1984), parametric statistics were considered appropriate. The level of significance established for this study was set at .05. Values missing from a data set for some study participants, due, for example, to refusals to answer a question, others indicated they did not know, and some respondents simply neglected to f i l l in an answer. The issue of missing data was handled in two different ways. Firstly, the data file lacked complete information due to some 60 questionnaire items not being answered for the various tools that were filled out. A l l o f these responses were declared as missing data and missing-value labels were specified in the computer program. These missing values for each item were replaced by mean sample values. Secondly, i f the whole questionnaire on any of the instruments was unanswered, data for that complete instrument were discarded. Data were therefore analyzed including user-defined missing values. Polit and Hungler (1999) point out that i f the missing information is for key dependent variables, it may be necessary to remove the entire case, and this strategy is referred to as list wise deletion of missing values. In this study the data from 10 scales were discarded because 10 subjects refused to answer the questionnaire on spirituality, and findings were reported for the remaining 88 cases where possible. Summary In this chapter the methods used to explore the level o f spirituality and health-related quality of life were outlined. The study was descriptive and correlational in design. The sample consisted of subjects who were recruited through one hospital based hemodialysis unit and met the inclusion criteria. The perceptions of spirituality and health-related quality of life were measured at only one point of time. The instruments used to collect data included the revised Spiritual Involvement and Beliefs Scale and the Kidney Disease Quality of Life Short Form. The nursing staff at the hemodialysis center identified suitable patients as study participants and the investigator distributed the questionnaire packages to the subjects on their dialysis days. Descriptive statistics and the Pearson r were used to analyze the three major research questions. The Hospital and The 61 University Research Ethics Boards granted their approval to conduct the study. Ethical considerations were discussed and data were reported collectively. In the chapter to follow, the demographic characteristics of the study sample and the findings related to each of the three research questions are presented. 62 CHAPTER FOUR: FINDINGS The presentation of Chapter Four is arranged under two section headings. In the first section, a description of the demographic and health characteristics o f the sample is reported. In the second section, the results related to each of the three research questions are presented. Characteristics of the Sample The sample consisted of 98 adult kidney disease patients who were receiving hemodialysis over three months prior to the study. These patients constituted 74.2% (98/132) of the total patients in one hemodialysis unit during the recruitment period. Those who could not be recruited were comatose/semi-conscious, cognitively impaired with dementia/confusion, physically too i l l with an extremely poor general condition (7 patients), less than three months experience o f hemodialysis (12 patients), refused to jo in the study (5 patients), or there was a language barrier (10 patients). O f the 98 questionnaires returned, 10 subjects did not complete all the questions on spirituality despite being reminded by the researcher after the collection of the questionnaires. These subjects explained that spirituality was a private and sensitive topic that they did not want to share with others. Since spirituality is a key variable of this study, it is necessary to remove the entire case (Polit & Hungler, 1999). Data were therefore analyzed and findings are reported based on 88 subjects. On the whole, the average time required to complete the questionnaire was 35 minutes, ranging from 30 to 45 minutes. Fifteen subjects requested questionnaires to be read to them because of poor eyesight or having their dominant hand or arm used for 63 dialysis, but the majority of the subjects could complete the questionnaire on their own, whereas others needed some explanation by the investigator. The data collection was completed within a period of three weeks. Demographic Characteristics Demographic data collected from the patients included gender, age, ethnicity, marital status, educational level, employment status, total household income, and length of time on hemodialysis. Unfortunately, the religious affiliation of the participants was not identified mainly because the focus of this study was on spiritual involvement and beliefs. O f the 88 subjects who completed all the questionnaires, 51 were male (58%) and 37 were female (42%). Age of the subjects (Table 1), ranged from 24 to 92 years, indicated that the age distribution was not significantly skewed ( M = 63.3, SD = 15.9, Median = 65). Fifty-one subjects (58%) were currently married. The ethnicity of the subjects was as follows: 70 were Caucasian (79.5%); 9 were Asian (10.2%, including 6 Chinese, 1 Korean, 1 Japanese, 1 Filipino); 2 were African-American (2.3%); and 2 were First Nations people (2.3%). Table 1. Age Distribution of The Sample (n = 88) Age group Male Female Total Freq. % Freq. % Freq. % 24-60 28 31.8 10 11.4 38 43.2 >61 23 26.0 27 30.6 50 56.8 Total 51 58.0 37 42.0 88 100.0 64 Thirty-six subjects (40.9%) had attained an educational level of below grade 12, twenty-four (27.3%) had completed grade 12, nineteen (21.6%) had attained an education at college level, and nine (10.2%) had university education (Table 2). Employment characteristics revealed that 56 were retired, 24 subjects were on disability pension, 3 were unemployed, 6 were employed part-time, 3 were employed full time, and one was self-employed (Table 3). The household income showed that 48.9% of the subjects' earned less than $20,000 and only 21.6% of subjects made more than $40,000 last year (Table 4). Table 2. Education Level of The Sample (n = 88) Education Level Frequency Percent High School 36 40.9 High School Graduate 24 27.3 Some College 19 21.6 College + 9 10.2 Total 88 100.0 Table 3. Employment Status of The Sample (n = 88) Employment Status Frequency Percent Working full-time 3 3.4 Working part-time 6 6.8 Unemployed 3 3.4 Retired 51 58.0 Disabled 24 27.3 Self employed 1 1.1 Total 88 100.0 65 Table 4. Household Income of The Sample (n = 88) Household Income Frequency Percent < $20,000 43 48.9 $20,001-40,000 26 29.5 > $40,001 19 21.6 Total 88 100.0 Health Characteristics of the Sample The health information collected from the patients related to the causes of their kidney disease. The four most common causes of kidney disease were hypertension, diabetes, glomerulonephritis and polycystic kidney disease. The number of medical or health problems reported by patients with end-stage renal disease ranged from one to three (Mean =1.8). Ha l f o f the subjects had one or more coexisting illnesses. Five patients reported three health problems. Fifty-four patients reported two health problems. Twenty-nine patients reported a single health problem. Sixty-one (69.3%) patients reported hypertension, 37 (42%) patients had diabetes, 21 (24%) patients had Glomerulonephritis, and 7 (8%) patients had Polycystic Kidney Disease. The length of time on hemodialysis (Table 5) varied from 3 months to 25 years. The average time on the program was 2.8 years. Twenty-eight (31.8%) subjects had been on hemodialysis for less than one year, 42 (47.7%) subjects for one to three years, 13 (14.8%) for four to six years, 2 (2.3%) for seven years and 3 (3.4%) for over ten years. The average hemodialysis time per treatment was 3.5 hours. The average frequency for hemodialysis was three times a week. 66 Table 5. Length of Time on Hemodialysis of The Sample (n = 88) Length of time Frequency Percent 3 - 12 Months 1 - 3 Years 4 - 6 Years 7 - 9 Years > 10 Years 28 42 13 2 3 31.8 47.7 14.8 12.3 3.4 Total 88 100.0 Research Findings In this section, the findings of this research w i l l be presented in relation to each o f the three research questions. The level of spirituality and health-related quality of life were examined using descriptive statistics. The Pearson Product Moment Correlation Coefficient was used to examine the relationship between spirituality and quality of life. Research Question 1: Regarding Level of Spirituality in Hemodialysis Patients To address the level of spirituality, the results obtained on the Spiritual Involvement and Beliefs Scale-revised (SE8S-R) wi l l be presented. The frequency and distribution of total scores and the means of items of the factors w i l l be presented. The total score on the spirituality scale (SEBS-R) ranged from a low of 52 to a high of 148 and the distribution was not significantly skewed (Range = 96, M = 102.8, SD = 24, Median = 105) (Table 6). The mean score was approximately 66.8% of the maximum possible SEBS-R score. Forty-three subjects (49%) scored below the mean whereas 23 subjects (26%) scored above 120 (75th percentile). Female subjects scored 67 higher than males, while subjects older than 60 scored higher than younger subjects in spirituality scale (Table 7). Table 6. Total Spirituality (SIBS-R) Scores of Chronic Hemodialysis Patients Total Score Frequency Percent 52 - 64 (low spirituality) 5 5.7 65 - 79 10 11.4 80 - 94 20 22.7 95 -109 14 15.9 110 -124 22 25.0 125 -139 9 10.2 140 - 148 (high spirituality) 8 9.1 Total 88 100.0 Note: 22 items scored from 1 to 7. Possible range 22 to 154 Table 7. Mean Spirituality Scores of Male and Female Chronic Hemodialysis Patients (n = 88) Age group Male Freq. Female Freq. Total Freq. 24-60 >61 100.3+29.4 97.3+23.9 28 23 103.4+19.8 10 109.7+17.9 27 101.1+27.0 38 104.0±21.6 50 Total 98.9+26.9 51 108.0+18.4 37 102.8+23.9 88 Note: 22 items scored from 1 to 7. Possible range 22 to 154. There are four factors within the SEBS-R scale being developed by the author o f the instrument (Hatch et al, 1998). Means for each factor and factor item means was presented in Table 8 to permit comparison and identification of areas of higher 68 spirituality. The factor item means was highest for Factor III, personal application/humility (Item mean = 5.74), which addresses the positive potential in al l aspects of life for the application o f spiritual principles in daily life. This was followed by Factor IV, acceptance/insight (Item mean = 5.50), which addresses an individual's insight into futility o f focusing attention on things that cannot be changed; and then Factor II, spiritual perspective/existential (Item mean = 5.34), which addresses the awareness of interconnectedness and transcendence in daily life. Finally, Factor I, addresses the core spirituality, had the lowest item mean (4.37) which indicated the lowest level of spirituality level. Table 8. SIBS-R Items and Factor Means and Standard Deviations Factor Items in the Factor Factor Mean SD Item Mean I Core spirituality 16 69.89 21.52 4.37 II Spiritual perspective/ 5 26.69 4.12 5.34 Existential III Personal application/ 2 11.48 1.74 5.74 Humility I V Acceptance/insight 1 5.50 1.30 5.50 Total 24 113.56 28.68 19.95 When examining the correlation between the SIBS-R score and the demographic factors, such as age, ethnicity and employment status, no statistical relationship was noted (Table 9). There was also no correlation between the length o f time on hemodialysis and spirituality. The only correlations were with the education 69 (r = .22, rj < .05) and household income (r = .25, p_ < .05) indicating that the higher educational levels and household incomes were associated with higher spirituality scores. Table 9. Correlation between SEBS-R Scores and Demographic Factors For Chronic Hemodialysis Patients 1 2 3 4 5 6 7 1. SEBS-R 1.00 .08 .01 .22* -.09 ' .25* -.06 2. Age 1.00 -.08 -.20 .02 -.07 -.07 3. Ethnicity 1.00 -.15 .10 -.05 -.15 4. Education 1.00 -.02 -.36** .06 5. Employment status 1.00 -.28** .08 6. House Income 1.00 -.04 7. Length of time on hemodialysis 1.00 * Correlation is significant at 0.05 level (2-tailed), P = < 0.05 ** Correlation is significant at 0.01 level (2-tailed) Influence of Demographic Factors on Spirituality Chi-Square analysis was used to assess whether a relationship exists among spirituality scores, genders, age groups and length of time on hemodialysis. The, and between lengths of time on hemodialysis was at .09. Therefore, since the significance level is greater than .05 (Munro, 2001), there is no statistical difference between significance level between spirituality and gender was at .32, between age groups was at .45men and women in their spirituality scores. There is also no statistical difference in spirituality scores between different age groups and between different lengths of time on hemodialysis. Nevertheless, when examining the mean spirituality score (SEBS-R) in association with the demographic factors and length of time on hemodialysis (Table 10) 70 indicated that female subjects scored higher in spirituality ( M = 108, SD =18.4) than male subjects ( M = 98.9, SD =26.9). Subjects aged older than 60 scored higher ( M = 104, SD =21.6) than the younger group ( M = 101, S D =27). Subjects who were married showed higher spirituality score ( M = 108.3, SD =24.4) as opposed to unmarried-subjects ( M = 95, SD = 21.3). Ethnicity showed influences in the spirituality scoring. The African-American showed the highest mean score of 129.5 (SD = 19), followed by the South Asian's mean score of 123.2 (SD = 14.9), the Asian's mean score of 109.3 (SD = 17.4), Caucasian's mean score of 100 (SD = 24.5) and the mean score of First Nation's people was 91.5 (SD = 6.36). Subjects with higher education showed better scores, and the scores tend to decrease as the education level decreased. Subjects who worked a full time job or self employed scored better in spirituality than the unemployed subjects. The subjects who had regular income from the retirement and the disability pension also scored higher than those who were unemployed. This high score trend was reflected in subjects with high household income. Twenty-eight subjects (31.8%) who had been on hemodialysis for less than 1 year scored higher ( M = 104.6, S = 2.6) than those who had been in the program for over 10 years ( M = 97.7, SD = 18.5), and the scores tend to decrease as the length o f time on hemodialysis increased. Table 10. SIBS-R Scores Associating with Demographic Factors A n d Length of Time on Hemodialysis Characteristic n (%) SIBS-R (SD) Gender ( N = 88) •102.8 + 23.9 M e n • 51(57.9) 98.9 + 26.9 Women 37(42.1) 108.0+18.4 Age ( M = 63.9) 24-60 38(43.2) 101.1 + 27.0 >61 50(56.8) 104.0 + 21.6 Ethnicity African American 2 (2.3) 129.5 + 19.1 Asian 9 (10.2) 109.3 + 17.5 South Asian 5 (5.7) 123.2 + 14.9 Caucasian 70 (79.5) • 100.0 + 24.5 First Nation 2 (2.3) 91.5+ 6.4 Marital Status Not Married 37(42.0) 95.0 + 21.4 Married 51(58.0) 108.3 + 24.4 Education < High School 36(40.9) 97.5 + 22.2 High School Grad 24(27.3) 102.6 + 21.2 Some College 19(21.6) 107.9 + 28.4 College + 9(10.0) 113.2 + 26.3 Employment Status Working Ful l Time 3 (3.4) 136.3+ 9.1 Working Part Time 6 (6.8) 98.8 + 29.4 Unemployed 3 (3.4) 92.7 + 35.9 Retired 51(58.0) 102.5 + 23.4 Disabled 24(27.3) 100.2 + 21.6 None of the Above 1(1.1) 133.0 Household Income < $20,000 43(48.9) 98.1 + 20.4 $20,000-$40,000 26(29.5) 102.3 + 24.7 > $40,000 19(21.6) 113.9 + 27.8 Length of time on Hemodialysis 3-12 Months 28(31.8) 104.6 + 23.6 1-3 Years 42(47.7) 102.3 + 25.5 4-6 Years 13(14.8) 102.5 + 22.7 7-9 Years 2 (2.3) 96.5 + 33.2 > 10 Years 3 (3.4) 97.7+18.5 72 Research Question 2: Regarding Level of Health-related Quality of Life To address the level of health-related quality of life, data from the Kidney Disease Quality of Life Short Form (KDQOL™), w i l l be presented using descriptive statistics. The Kidney Disease Quality of Life Short Form (KDQOL™) includes two parts: the 36-item Short Form Health Survey (SF-36) and the Kidney Disease-targeted Multi- i tem survey. The frequency and distribution of scores and the means of items within these two subscales w i l l also be presented. The total score of KDQOL-SF™ ranged from 547 to 1849 and the distribution was not significantly skewed (Range = 1300, M = 1233, SD = 274, Median = 1197). The mean total score was approximately 58.7% of the maximum possible score of the KDQOL-SF™ score. Thirty-seven subjects (58%) scored below the mean. The SF-36 has eight domains of health as a generic core that represent physical functioning, physical role limitation, emotional role limitation, social functioning, emotional well being, bodily pain, vitality and general health perception. The total score on the SF-36 scale for the 88 subjects ranged from 120.5 to 866 and the distribution was not significantly skewed (Range = 745, M = 487, SD = 170, Median = 469) (Table 11). The mean score was approximately 54.1% of the maximum possible SF-36 score. Forty-six subjects (52%) scored below the mean whereas 22 subjects (25%) scored above 600 (75 percentile). Although the majority of the sample had low levels, some subjects did have moderate to high scores. Male subjects scored higher than females, while subjects younger than 60 scored higher than older subjects in SF-36 Health Survey. (Table 12) 73 Table 11. Total SF-36 Scores of Chronic Hemodialysis Patients (n = 88) Total Score Frequency Percent 100 - 249 L o w Score 6 6.8 250 - 399 27 30.7 400 - 549 23 26.1 550 - 699 19 21.6 700 - 866 High Score 13 14.8 Total 88 100.0 Note: 9 items scored from 0 to 100. Possible range 0 to 900. Table 12. Mean SF-36 Scores o f Male and Female Chronic Hemodialysis Patients (n= 88) Age group Male Freq. Female Freq. Total Freq. 24-60 551.2+163.8 28 420.3+191.9 10 516.8+178.8 38 >61 476.8+164.9 23 456.0+162.9 27 465.6+162.5 50 Total 517.7+166.9 51 446.4+169.2 37 487.7+170.6 88 Note: 9 items scored from 0 to 100. Possible range 0 to 900. In the SF-36, the mean scores of the subscales indicated 'Emotion Well-being' scored the highest ( M = 74.9, SD = 18) while 'Role-Physica l ' scored the lowest ( M = 26.8, SD = 37.3). The mean scores o f the remaining subscales ranged from 44.8 (General Health) to 69.7 (Social Function). The scores reflecting mental functioning: 'Emotional well being' ( M = 74.9, SD = 18); 'Role-emotional' ( M = 57.2, SD = 44.3); and 'Social 74 function' ( M = 69.7, SD = 27.5), tend to be higher than the rest of the scores that reflect the physical health (Table 13). Table 13. Mean SF-36 Subscale Scores of Chronic Hemodialysis Patients (n = 88) Measure Mean Scores Standard Deviation Physical function 46.08 28.16 Role-Physical 26.76 37.27 Pain 61.79 27.57 General Health 44.83 19.89 Emotional Well-Being 74.88 18.06 Role-Emotional 57.19 44.33 Social Function 69.72 27.53 Energy/Fatigue 46.20 19.20 Change in Health 57.39 26.30 Note: 9 items, each scored from 0 to 100. i The Kidney Disease-targeted Multi- i tem survey focused on ten domains of health-related concerns of individuals with kidney disease and on dialysis the areas represented are: symptom/problems; effects of kidney disease on daily life; burden of kidney disease; work status; cognitive function; quality of social interaction; sexual function; sleep; social support; dialysis staff encouragement; patient satisfaction; and the overall health rating. The total score ranged from 426.8 to 1075.5 and the distribution was not significantly skewed (Range = 648, M = 745, SD = 132, Median = 737). The mean total score was approximately 62% of the maximum possible score of the Kidney Disease-targeted Multi-i tem survey score. Forty-five subjects (51%) scored below the mean whereas 22 subjects (25%) scored above 833 (75 t h percentile) (Table 14). Although the majority of the sample had low levels, some subjects had moderate to high scores. Male 75 subjects scored higher than females, while subjects younger than 60 scored higher than older subjects in Kidney Disease-targeted Multi-i tem survey scores (Table 15). Table 14. Total Kidney Disease-targeted Multi-i tem Survey Scores of Chronic Hemodialysis Patients (n = 88) Total Score Frequency Percent 400 - 549 L o w Score 8 9.1 550 - 699 22 25.0 700 - 849 37 42.0 850 - 999 19 21.6 1 0 0 0 - 1149 High Score 2 2.3 Total 88 100.0 Note: 12 items scored from 0 to 100. Possible range 0 to 1200. Table 15. Mean (+ SD) Kidney Disease-targeted Multi-i tem Survey Score for Male and Female Chronic Hemodialysis Patients (n = 88) Age group Male Freq. Female Freq. Total Freq. 24-60 778.4+130.8 28 642.9+135.9 10 742.8±143.7 38 >61 728.4+141.2 23 765.1+108.3 27 748.2+124.6 50 Total 755.8+136.6 51 732.1+126.9 37 745.8+132.4 88 In the in Kidney Disease-targeted Multi-i tem survey, the subscales which had high mean scores were 'Cognitive Function' ( M = 83.4, SD = 17.7), 'Quality of Social Interaction' ( M = 81.2, SD = 16.5), 'Social Support' ( M = 80.1, SD = 23.6), 'Dialysis Staff Encouragement' ( M = 82.3, SD = 17.4), while 'Work Status' ( M = 16.5, SD = 30.1) 76 had the lowest score. The mean scores of the remaining subscales ranged from 43.1 (Burden of Kidney Disease) to 78.4 (Patient Satisfaction) (Table 16). Table 16. Mean (+ SD) Kidney Disease-targeted Multi-i tem Survey Subscale Scores for Chronic Hemodialysis Patients (n = 88) Measure Mean Score SD Symptom/Problem 76.27 15.14 Effects of Kidney Disease 66.61 20.84 Burden of Kidney Disease 43.04 26.17 Work Status 16.48 30.06 Cognitive Function 83.41 17.65 Quality of Social Interaction 81.21 16.47 Sexual Function 70.65 27.34 Sleep 60.92 22.38 Social support 80.07 23.55 Dialysis Staff Encouragement 82.29 17.44 Patient Satisfaction 78.41 17.71 Overall Health 60.68 18.62 Minimal possible equals 0 and Maximum possible score equal 100. Influence of Demographic Factors on HRQOL Chi-Square analysis for the 88 subjects indicated that there was no difference in SF-36 scores between genders, age groups, and length of time on hemodialysis. There was also no difference in Kidney Disease-targeted Multi-i tem survey scores between genders, age groups, and length of time on hemodialysis. The mean scores Kidney Disease-targeted Multi-i tem survey indicated that the demographic factors had less influence on the subjects perception of health problems related to the kidney disease (Table 17). Nevertheless, when examining the mean SF-36 Health Survey scores in association with the demographic factors and length of time on 77 hemodialysis indicated that male subjects scored higher in SF-36 ( M = 517, SD =166) and than female subjects ( M = 446, SD =169). Subjects aged younger than 60 scored higher ( M = 517, SD =179) than the older group ( M = 465, SD =162). There was no difference in SF-36 scores between subjects who were married or not married. Ethnicity showed influences in the SF-36 scoring. The African-American showed the highest mean score of 642 (SD = 183), followed by the Asian's mean score of 620 (SD = 210), the South Asian's mean score of 499 (SD = 210), Caucasian's mean score of 466 (SD = 154) and the mean score of First Nation's people was 465 (SD = 228). Subjects with higher education showed better scores, and the scores tend to decrease as the education level decreased. Subjects who worked a full time job or self employed scored better in spirituality than the unemployed subjects. The subjects who had regular income from the retirement and the disability pension also scored higher than those who were unemployed. This high score trend was reflected in subjects with high household income. Subjects who had been on hemodialysis for less than 3 year scored lower ( M = 466, SD = 171) than those who had been in the program for over 10 years ( M = 616, SD = 197), and the scores tend to increase as the length o f time on hemodialysis increased. The comparison of health related quality of life between gender and age indicated that women reported more disability than men in physical functioning, role physical, pain, role emotional, social functioning, and sexual function. Patients older than 60 years scored lower in physical functioning than younger patients, but scored better kidney disease symptoms/problems, sleep, quality of social interaction social support, emotional well being and general health perception (Table 18). Table 17. SF-36 and Kidney Disease-targeted Multi-i tem Survey Mean Scores Associated with Demographic Factors and Length of Time on Hemodialysis (n = 88) Characteristic SF-36 K D Targeted M e n 517+166 755 + 136 Women 446 ± 1 6 9 732 + 126 Age ( M = 63.9) 2 4 - 6 0 517+179 743 + 144 >61 465 + 162 745 + 124 Ethnicity African American 642+ 183 900 + 247 Asian 620 + 210 776 + 103 South Asian 499 + 221 757 + 207 Caucasian 466+ 154 739 + 125 Other 465 + 228 648 + 195 Marital Status Not Married 486+ 159 739 + 142 Married 488+ 179 750+ 125 Education < High School 485+151 734 + 133 High School Grad 465 + 171 749+.112 Some College 471 + 202 750 + 146 College + 590+ 157 773 + 161 Employment Status Working Ful l Time 672+ 157 895+ 180 Working Part Time 634 + 126 847 + 136 Unemployed 576 + 338 729 + 228 Retired 461+ 163 758 + 105 Disabled 462 + 143 668 + 128 None of the Above 728 961 Household Income < $20,000 485 + 162 746 + 125 $20,000-$40,000 4 1 5 ± 1 6 4 699 + 124 > $40,000 591+ 152 808+ 139 Length o f time on H D 3-12 Months 494 + 169 760 + 138 1-3 Years 466 + 171 743 + 131 4-6 Years 503 + 172 731+136 7-9 Years 531 + 203 766 + 206 > 10 Years 616+197 698+ 83 79 Table 18. Association of Gender and Age with Health-related Quality of Life (KDQOL-SF™) (n = 88) KDQOL-SF™ M e n Women Age<60y Age>61y Subscale (n = 51) (n = 37) ( n - 3 8 ) (n=50) SF-36 (Mean Scores) Physical Functioning 53.4 35.9 59.7 35.7 Role Physical 29.9 22.4 31.7 23.0 Pain 68.2 52.9 62.6 61.2 General Health 46.1 43.1 41.8 47.1 Emotional Well-being 76.8 72.2 72.4 76.7 Role Emotional 64.7 46.8 64.0 51.9 Social Functioning 73.9 63.9 71.9 68.0 Energy/Fatigue 47.8 43.5 48.7 * 44.0 Change in Health 57.4 57.4 58.6 56.5 K D Targeted (Mean Scores) Symptom/Problems 75.7 77.1 76.6 77.5 Effects of K D 65.6 67.9 60.7 71.0 Burden of K D 43.5 42.4 42.8 43.3 Work Status 20.6 18.8 23.7 11.0 Cognitive Function 84.1 82.5 81.8 84.7 Quality of Social 80.4 82.3 77.9 78.3 Interaction Sexual Function 72.9 62.5 75.0 65.0 Sleep 59.4 62.9 55.4 65.1 Social Function 81.0 78.7 78.9 80.9 Dialysis Staff 83.6 80.7 84.2 81.0 Encouragement Patient Satisfaction 77.8 79.3 78.9 78.0 Overall Health Rating 60.4 61.1 58.2 62.6 Min ima l possible equals 0 and Maximum possible score equal 100. 80 Research Question 3: Regarding the Relationship between Spirituality and Health-related Quality of Life The Pearson Product Moment Correlation Coefficient was used to quantify the relationship between spirituality and health-related quality of life and the components of each o f these scales. There was no statistical relationship between spirituality (SIBS-R) and health related quality o f life (KDQOL-SF™) (r = .14, p < .05,2-tailed). There was also no relationship between SIBS-R and SF-36 Health Survey (r = .09, Q < .05,2-tailed), as well as no correlation between SIBS-R and Kidney Disease-targeted Multi- i tem survey (r = .19, p < .05,2-tailed) (Table 19). Table 19. Correlations of Spirituality (SLBS-R) and Total Scores of Kidney Disease Quality o f Life Short Form (KDQOL-SF™), Health Survey (SF-36), and Kidney Disease-targeted Multi-i tem Survey Scores (n = 88) 1 2 3 4 1. Spirituality (SIB-R) 1.00 .14 .09 .19 2. KDQOL-SF™ 1.00 .93** .88** 3. SF-36 1.00 .63** 4. Kidney Disease-targeted 1.00 ** Correlation is significant at 0.01 level (2-tailed). p = < 0.05 The SLBS-R was used to compare with the subscales within the SF-36 (Table 20). There was no statistical relationship between SLBS-R and most o f the subscales within SF-36 except for two subscales: "General Health" and "Energy/Fatigue". A small 81 correlation was found between SLBS-R and "General Health" (r = 0.22, p. = < .05), showing that general health scores increased with increasing spirituality scores and vice versa. The correlation between SLBS-R with "Energy/fatigue" was also small (r = .30, rj = < .05). There was moderate relationship between "General Health" and "Energy/Fatigue" (r = .54, p. = < .05). Table 20. Correlations of Spirituality (SLBS-R) and SF-36 Subscale Scores (n = 88) 1 2 3 4 5 6 7 8 9 10 1. SIBS-R 1.00 .04 .10 -.12. .22* ,12 -.03 -.07 .30** .11 2. Physical Function 1.00 45** 43** .45** .14 .36** .45** 47** 34** 3. Role-Physical 1.00 .23* .45** .32** 43** .51** 49 ** .24 4. Pain 1.00 .40** 43** 34** .42** .32** .13 5. General Health 1.00 41** .29** 47** .54** .31** 6. Emotion Well-Being 1.00 3 j ** 51** .58** 32** 7. Role-Emotional 1.00 .51** .31** .11 8. Social function 1.00 .53** .34** 9. Energy/fatigue 1.00 .42** 10. Change in Health 1.00 * Correlation is significant at the 0.05 level (2-tailed). p = < 0.05 ** Correlation is significant at the 0.01 level (2-tailed) 82 The SEBS-R was used to compare with the subscales within the Kidney Disease-targeted Multi-i tem survey. There was no statistical relationship present between SEBS-R and all the subscales within the Kidney Disease-targeted Multi-i tem survey (Table 21). Table 21. Correlations of Spirituality (SEBS-R) and Kidney Disease-targeted Multi- i tem Survey Subscales Scores (n = 88) - _ _ _ _ _ _ _ _ _ _ _ _ 1. STBS-R 1.00 .09 .19 .03 .15 -.04 .09 -.24 .15 .15 .15 .97 .18 2. S P 1.00 .46** .38** .08 .57** .42** .04 .57** .22* .01 -.11 .42** 3. E K D 1.00 .57**-.02 .17 .32** .34 .42** .27* .12 .07 .42** 4. B K D 1.00 .14 .29** .37** .52** .36** .40** .07 .10 .25* 5. WS 1.00 .04 .01 .05 .14 .12 .15 -.03 .25* 6. CF 1.00 .55** .19 .44** .41** .04 -.05 .29** 7. QSI 1.00 .18 .40** .47** .19 .28** .25* 8. SF 1.00 -.03 .11 -.26 -.86 .16 9. S 1.00 .37** -.16 -.19 .44** 10. SS 1.00 .15 .10 .22* 11. D S E 1.00 .44** .14 12. PS 1.00 .06 13. O H 1.00 ** Correlation is significant at the 0.01 level (2-tailed). p = < 0.05 * Correlation is significant at the 0.05 level (2-tailed). Note: 1) SIBS-R = Spiritual Involvement & Beliefs Scale 2) SP = symptom/problem list 3) E K D = effects of kidney disease 5) WS = work status; 7) QSI = quality of social interaction 9) S = sleep 11) DSE = dialysis staff encouragement 13) O H = overall health 4) B K D = burden of kidney disease 6) CF = cognitive function 8) SF = sexual function 10) SF = social function 12) PS = patient satisfaction 83 There were moderate correlations between patients' perception of 'social support' and SF-36 Health Survey (r = .44, g = < .05), Kidney Disease-targeted Multi- i tem survey (r = .62, g < .05), as well as small correlations among most of the subscales within these two surveys (Table 21 & 22). Table 22. Correlations of Social Support and SF-36 Subscale Scores (n = 88) 1 2 3 4 5 6 7 8 9 10 11 1. Social support 1.00 .44** .24* .33** .19 .44** .45** .28** .33** .29** .25* 2. SF-36 1.00 .68** .70** .58** .66** .59** .69** .78** .72** .50** 3. Physical Function 1.00 .45** .43** .45** .14 .36** .45** .47** .34** 4. Role-Physical 1.00 .23* .45** .32** .43** .51** .49** .24* 5. Pain 1.00 .39** .43** .34** .42** .34** .13 6. General Health 1.00 .41** .29** .47** .54** .31** 7. Emotional Well-Being 1.00 .31** .51** .58** .32** 8. Role-Emotional 1.00 .51** .31** .11 9. Social function 1.00 .53** .34** 10. Energy/fatigue 1.00 .42** 11. Change in Health 1.00 * Correlation is significant at the 0.05 level (2-tailed). p = < 0.05 ** Correlation is significant at the 0.01 level (2-tailed) Summary The sample consisted of 98 adult kidney disease patients who received hemodialysis over three months prior the study. These patients constituted 74.24% (98/132) o f the total patients in one hemodialysis unit during the recruitment period. O f 84 the 98 questionnaires returned, ten subjects did not complete all the questions on spirituality due to personal reasons. The data analysis was based on 88 cases. A l l subjects had E S R D and had been on hemodialysis from 3 months to 25 years prior to the study. The age o f subjects ranged from 24 to 92. There were 51 males and 37 females. Over half of the sample was retired or on disability pension. Nearly half of the sample had attained an education at less than the grade 12 level. Hypertension and diabetes were the most frequently reported causes of the kidney disease. There was no statistical difference present between those subjects who completed and those who did not complete the questionnaires in terms of demographic characteristics and the health-related quality of life scores. Findings indicated that these chronic hemodialysis patients perceived moderately low levels o f spirituality as measured by the revised Spiritual Involvement and Beliefs Scale. There was variability in the level of spirituality perceived by the study sample. Female subjects scored higher than males, while subjects older than 60 scored higher than younger subjects in the spirituality scale. Subjects who had been on hemodialysis for less than one year scored higher than those on hemodialysis for longer years. The health-related quality o f life was measured by the Kidney Disease Quality of Life Short- Form scale. These chronic hemodialysis patients perceived moderately low levels o f health-related quality of life, and lower levels in physical than in mental and emotional dimensions. Women reported more disability than men in physical functioning, pain, role limitations-emotional, social functioning. Older patients were more disabled in physical functioning than younger patients. There was no statistical relationship between spirituality (SLBS-R) and health related quality of life ( K D Q O L - S F ™ ) (r = . 14, p < .05, 2-tailed). There was also no correlation among SLBS-R, SF-36 Health Survey (r = .09, p < .05), and the Kidney Disease-targeted Multi-i tem survey (r = . 19, p < .05). Small correlations were present among spirituality, education (r = .22, n_< .05) and household income (r = .25, p_ < .05), showing that spirituality scores increased with higher education and household income. Subscales analysis indicated that there was small correlation found between SLBS-R and "General Health " (r = 0.215, p < .05), as well as SLBS-R and "Energy/fatigue" (r = 0.30, p_ < .05), showing that general health score increases with increasing spirituality score and vice versa. Findings also demonstrated that patients who perceived higher level of social support generally perceived better health related quality of life. 86 CHAPTER FIVE: DISCUSSION, CONCLUSIONS, IMPLICATIONS AND RECOMMENDATIONS This final chapter w i l l discuss first the research findings regarding the study sample in terms of demographic, health and length of time on hemodialysis; and next, the findings related to each of the research questions under three headings: spirituality, health-related quality o f life, and the relationship between spirituality and health-related quality of life. This chapter w i l l conclude the study with implications and recommendations for nursing practice, education, and research that arises from the findings. Discussion In this section, the study sample w i l l be discussed. Next, the findings related to each of the research question w i l l be discussed in relation to methodological issues, theoretical expectations, and other research studies. Demographic Characteristics of the Sample Ninety-eight subjects agreed to participate out of 132 patients in one hemodialysis unit. The response rate for this study was good. Possible influencing factors were that many subjects were pleased to know their spirituality and quality o f life were being considered important. Many subjects seemed to appreciate the opportunity to reflect on their spirituality and the issues that had arisen from their kidney disease that they initially found difficult to voice. Nevertheless, there were 10 subjects who initially agreed to joined the study, but after completing the first part of the questionnaire on health-related quality of life, they refused to complete the second part of the questionnaire on 87 spirituality for personal reasons. On examination of the demographic characteristics and the health-related quality of life scores of this group of subjects, there was no significant difference found between the groups of subjects who completed and did not complete the questionnaires in terms of gender, age, ethnicity, education, employment status and health related quality of life scores. N o Canadian statistics were available with which to compare the sample in terms of demographic data such as, marital, employment status, and household income. The statistics of characteristics of E S R D dialysis patients in British Columbia and Canada indicate that the majority of the patients are Caucasian and diabetes is the most prominent primary diagnosis at treatment initiation (see Appendix F & Appendix G). In this sample, 79.5% of the patients were Caucasian that is higher than the provincial (56.4%) and the national (66.8%) hemodialysis trend. Since the sample did not include non-English speaking subjects, this may explain the high percentage of Caucasians in this sample compared to the national and provincial statistics. Sixty-nine percent of the sample reported hypertension as their primary kidney disease, and 45.9% of this group of patients also has diabetes. These major medical/health problem categories are somewhat high in this study. The Canadian Organ Replacement Registry is the national information system on dialysis and organ transplantation from which hemodialysis statistics are available. Canadian statistics from 2004 indicate that the number of patients being treated for E S R D climbed by nearly 20% in five years (see Appendix H & Appendix I). O f all new patients in 2001, 55% were 65 years of age or older. Although men still accounted for the majority (58%) of patients in 2001, much of the recent growth in treatment for E S R D in 88 the 65 and older population occurred among women. From 1997 to 2001, there was a 45% increase in the rate for women 65 years and older starting treatment for E S R D , compared to an increase of 23% for men. Women 65 years and older represented 42% of all patients in this age group in 2001, up from 39% in 1997. In this sample 51% were over 65 years of age and 42% were female subjects. The sample for this study is reasonably representative o f the E S R D patients in British Columbia in terms of age and gender. In summary, the study sample is reasonably representative of the population of chronic hemodialysis patients in British Columbia in terms of age and gender. In terms o f educational level, over 40% of the sample had attained an education at less than the grade 12 level. With respect to health characteristics, over two-thirds of the subjects indicated the presence of cardiovascular disease/diabetes as the cause of the kidney disease or a complicating condition. The sample is also similar to the national hemodialysis trend. Spirituality This sample o f chronic hemodialysis patients perceived a moderately lower level o f spirituality with a mean score of 102.8 using the SEBS-R scale (being approximately 66.8% of the maximum possible SEBS-R score), when compared with the mean score of the pilot test done by the author of the spirituality scale ( M = 124.8, n = 168) (Hatch et al., 1998). Female subjects scored higher than males, while subjects older than 60 scored higher than younger subjects in spirituality scale. The non-Caucasian subjects reported higher spirituality score than the Caucasian. Subjects who had been on hemodialysis for 89 less than one year scored higher in spirituality than those on hemodialysis for longer years. The factor analysis of the SLBS-R indicated that the factor items in personal application/humility, acceptance/insight, and spiritual perspective/existential reflected the highest levels of spirituality. These findings revealed the subjects to be more inclined to apply spiritual principles in their daily life through interconnecting with the transcendence and accepting things as they were. The internal effects of the subjects' action to search for meaning and purpose in life were important indicators of their spiritual status. Possible explanations for the findings w i l l be discussed. The stress and coping theoretical framework by Lazarus and Folkman (1984) may provide some explanation for the moderately low spirituality score. One plausible explanation may be a function of clinical and technological advances in the hemodialysis field. Over the last decade, progressive improvements in hemodialysis technology, drug therapy, diet counseling and patient care, have led to dialysis adequacy and thus increased the success and survival rates of E S R D patients. A s coping is influenced by the appraised characteristics of the stressful context, including its controllability (Folkman, Lazarus, Dunkel-Schetter, DeLongis, & Gruen, 1986), unlike other chronic illness, E S R D patients have a unique treatment option available that provides a back-up procedure to keep them alive i f hemodialysis fails. I f hemodialysis fails due to a lack availability of vascular access, peritoneal dialysis is an alternative life-saving measure that allows patients to maintain kidney function while they wait for a suitable donor kidney to become available. Although some patients may be acutely aware 90 of the possibility of access failure, they may also believe that there is no point worrying about such an event until it happens. Patients may feel that they can rely on such improvements in dialysis technology should they need to make use of the health care system in the future instead of relying on spiritual coping. This may explain the moderately low level o f spirituality in this sample. Another factor that may explain the moderately low level of spirituality perceived by the patients in this study is the feeling of optimism stemming from their improved health status. E S R D patients are seriously i l l at the pre-dialysis stage and their health status improves significantly with the initiation of dialysis. A s Carver & Scheier (1999) postulate that coping is influenced by personality dispositions including optimism (cited in Folkman & Moskowitz, 2000), it is possible that patients evaluate the degree of success achieved with their dialysis treatment and view their future in this light. Therefore, patients who experience an improvement in their health status because of the dialysis treatment may not feel the need for a higher power and in this way perceive moderately low levels of spirituality. Another possible reason may be a function o f problem-oriented coping methods. In the study by Lok (1996) on a group of dialysis patients to determine the significant stressors and coping methods which are related to quality of life, the results of the study revealed that hemodialysis patients depend on problem-oriented coping methods considerably more than on affective methods in dealing with stressors. The most highly ranked problem-solving methods include: "look at problem objectively', 'accept situation as it is ' and 'try to maintain control over the situation'. Lazarus and Folkman (1984) contend that the relative predominance of problem- and emotion-oriented coping 91 strategies depends on the appraisal of the situation. Problem-oriented forms of coping increase in situations appraised as changeable and emotion-oriented coping is heightened in situations perceived as not amenable to change. A possible explanation as to why chronic hemodialysis patients seem to prefer problem-oriented coping may be related to their feelings that they have more control over factors affecting the successful outcome of their dialysis treatment. A s hemodialysis patients live with their kidney replacement therapy, they gain experience with the routines, feedback concerning progress toward health, and expectations about care outcomes. After hemodialysis for three or more years, patients are likely familiar with the physiological stressors associated with their treatment, and they may look at the problem more objectively. They may either accept the situation as it is or try to maintain control over the situation. Following this argument and by virtue of their experience, patients may rely on less spiritual coping as the events of their renal replacement therapy are more familiar and it is l ikely that they have formulated clearer expectations regarding their treatment. Other possible reasons for the variability of spirituality scores may be explained by literature findings. The moderately low level of spirituality may be related to the acute hospital setting where the majority of patients were in unstable condition. It is possible that the continuation of health problems and the persistence of health problems over time may influence the level o f spirituality because the subjects were concerned with physiological needs rather than being focused on their spiritual life (Hardin et al., 2003). Spirituality scores in this study were uncorrelated to length o f time on hemodialysis. This finding is consistent with previous studies that once the patient has 92 become accustomed to the dialysis routine and established their coping behaviors, the number of years on the dialysis program does not change coping behaviors significantly (Littlewood, Hardiker, Pedley & Olley, 1990; Lok, 1996; M o k & Tarn, 2001). Nevertheless, one third of the sample who had been on hemodialysis for less than one year scored higher than those who were in the program for longer years. These subjects may have relied on spirituality for coping at the beginning of the hemodialysis program until they had become accustomed to the dialysis routine. A small correlation was found among education, household income and spirituality. Patients in this study who had a higher level of education and higher household income had a higher level of spirituality. Nevertheless, the majority o f the sample was less educated, which brought down the level of spirituality of the sample. Findings indicated that subjects older than 60 had a higher spirituality score than younger subjects. This finding is consistent with previous study by Gioiel la and associates (1998). Differences that existed between the developmental tasks and life experiences of younger and older adults could possibly explain the variability in subjects' perception of spirituality. Older individuals who have dealt with the developmental milestones o f establishing career and independence may be more focused on the losses associated with the period o f later maturity, such as physical aging, retirement, and the loss of loved ones (Hurlock, 1980; Neugarten, 1979). Even though hemodialysis is frequently considered an opportunity for renewed health, some patients may feel that their health did not meet their expectation for l iving a normal life (Parfrey et al., 1988; Smeltzer & Bare, 1996; Tovbin et al., 2003). Given the role that spirituality may play in coping with change and loss associated with advanced age ( K i m , Heinemann, Bode, 93 Sliwa and King (2000), to be able to maintain hope in the face of chronic illness, ESRD patients may rely on spirituality. The factor analysis also indicated that the subjects were more inclined to apply spiritual principles in their daily life through interconnecting with the transcendence and accepting things as they were. Findings also indicated differences in spirituality scores among races and gender. The non-Caucasian subjects scored higher in spirituality scale than the Caucasian, and female subjects reported higher spirituality scores than males. These findings were consistent with previous studies (Coleman & Holzemer, 1999; Levin et al, 1994; Sowell et al., 2000; Tanyi & Werner, 2003). Pargament (1997) proposed a theoretical explanation for why age, race and gender influence the use of spiritual coping. He postulated that older people, African Americans, women, and widows have less societal access to resources and power, therefore, religion becomes an accessible resource that is easily called upon for coping in times of crisis. The other reason for a higher spirituality score may be related to a function of psychological adjustment to conditions of illness. Even though hemodialysis is frequently considered an opportunity for renewed health, some patients may feel that their health did not meet their expectation of living a normal life (Parfrey et al., 1988; Smeltzer & Bare, 1996; Tovbin et al., 2003). Religiosity and spirituality have been found to increase in times of illness (Reed, 1986b), and Koenig and associates (1998) report a direct relationship between severity of illness and individuals' reliance on religious faith as a coping mechanism. Krause (1998) postulates that measures of religious coping that reflect a secure relationship with God have been tied to better psychological adjustment among people facing a variety of major life stressors. 94 The reason for the moderately low score in spirituality may be related to the psychometric quality of the instrument used to measure spirituality. As indicated by the author of the instrument, the pilot testing of SEBS-R was done with a sample of recovering alcoholics (168 adults and 25 adolescents) and approximately 5% of potential subjects declined to complete the instrument. The reasons for declining to complete the instrument and the education level of these subjects were not available. Though the tool showed good test-retest reliability of .93 in a sample of 17 subjects, the author cautioned that none of the data regarding revisions had been published. In this study, some subjects frequently selected the neutral answers (15% of the total number of answers were neutral) on the SEBS-R: this might indicate the subjects had difficulty in understanding the questions or difficulty in choosing alternative or appropriate answers. Moreover, in the presence of bi-modal age distribution (51 and 80), there may be a difference in interpretation of spirituality related to age. Since there was no question set to assess how these subjects define spirituality, this suggestion merits further research. Subjects from other cultures not fluent in English may have difficulty in understanding some of the wording used in the questionnaire. For example, item 4: T find serenity by accepting things as they are', item 11: T don't take time to appreciate nature', and item 21: T examine my actions to see if they reflect my values' may have been difficult for some participants to understand. In addition, some conceptual questions were written in a negative manner, such as item 3: 'A person can be fulfilled without pursuing an active spiritual life', and item 7: Tn times of despair, I can find little reason to hope'. Since 41% of the sample in this study had attained an education at less than grade 12, 95 these questions could have caused confusion for them and may explain the low spirituality scores. Before joining the study, all subjects were made aware that the purpose of the study was to examine the relationship between spirituality and quality of life, however, after finishing the first part of the questionnaire on health-related quality of life, ten subjects decided not to respond to the remaining questionnaires on spirituality (declined rate = 10%). Besides the possibility of not understanding the questions, another possible reason may be related to the layout of the study tool. Since the questionnaire on spirituality (SIBS-R) was placed in the last part of the questionnaire, it is possible that after completing the questionnaires on health-related quality of life (questions), the subjects might have been too tired to continue. In summary, because living with ESRD can be regarded as a stressful experience, the stress and coping theory of Lazarus and Folkman (1984) helped to explain possible reasons for the moderately low spirituality scores. The low level of spirituality experienced by the hemodialysis patients appeared to be related to a function of clinical technological advances in hemodialysis field; optimism stemming from the subjects' improved health; and a function of problem-oriented coping methods. A small correlation was found among spirituality, education and household income. Spirituality scores were uncorrelated to length of time on hemodialysis, however, subjects on hemodialysis for less than one year scored higher than those who had been in the program for longer years. The non-Caucasian subjects reported higher spirituality score than the Caucasian, and female subjects reported higher spirituality scores than males. Findings also indicated that subjects older than 60 had higher spirituality score 96 than younger subjects. The interpretation of spirituality may be different among age groups. The low level of spirituality experienced by long-term hemodialysis appeared to be related to the acute care hospital setting where the majority of patients were in unstable conditions, and these patients were likely concerned more with physiological needs than focused on their spiritual lives. The moderately low spirituality score appeared to be related to the methodological issue. Nearly half of the sample had attained less than a grade twelve education, and some subjects appeared to have difficulty in understanding the tool to measure spirituality. In addition, the spirituality tool was written in English and may not be understood by subjects from all cultural groups, and the subjects' interpretation of spirituality may be different from the definition used in this study. The psychometric quality o f the spirituality tool and the lay out of the questionnaire may have an influence on the spirituality scores. Health-related Quality of Life The KDQOL-SF™ includes two main subscales: the generic SF-36 Health Survey, and the Kidney Disease-targeted Multi- i tem survey. The SF-36 Health Survey includes eight multi-item measures of physical and mental health status: physical functioning, role limitations caused by physical emotional health problems, role limitations caused by emotional health problems, social functioning, emotional wel l -being, pain, energy/fatigue, and general health perceptions. The Kidney Disease-targeted Multi-item survey assesses particular health-related concerns of dialysis patients: symptom/problems, effects of kidney disease on daily life, burden of kidney disease, 97 cognitive function, work status, sexual function, quality of social interaction, and sleep, social support, dialysis staff encouragement, and patient satisfaction. The findings indicated that chronic hemodialysis patients perceived moderately low levels of health-related quality of life in all subscales of the KDQOL™ scale, however, there was variability. In the SF-36 Health Survey and the Kidney Disease-targeted Multi-item survey, half of the subjects scored below the mean that was 54% and 61% of the maximum score respectively. In the SF-36, the mean scores of the subscales indicated 'Emotional Well-being' scored the highest. In the Kidney Disease-targeted Multi-item survey, the mean scores of the subscales which had scores above 80% of the maximum scores were 'Cognitive Function', 'Quality of Social Interaction' 'Social Support', 'Dialysis Staff Encouragement'. This finding revealed that the sample had a reasonably good morale and social support. 'Physical function', 'Burden of kidney disease', and 'Work Status' had the lowest scores. This finding indicated that the physical dysfunction due to kidney disease might have some influence on the employment rate. The perceived level of health-related quality of life for this sample of chronic hemodialysis patients is discussed and possible reasons for its variability will be related to methodology and compared to findings in the literature. Some comments from the respondents on SF-36 health survey indicated that some questions were not relevant for ESRD patients who were bed-ridden, wheelchair bound, or requiring assistance or walkers for mobility. For example, item 3: 'Does your health limit you in these activities? ... vigorous activities, such as running, lifting heaving objects, participating in strenuous sports ... moderate activities, such as moving a table, pushing a vacuum cleaner, bowling or playing golf... lifting or carrying groceries ... 98 climbing several flights of stairs ... climbing one flight of stairs ... bending, kneeling, or stooping ... walking more than a mile . . . ' Those patients who were bed-ridden or had difficulty in mobility could have chosen the lowest score in all these questions. The incomplete data (a missing of 74.5%) for the dimension on 'Sexual function' was higher than for all other dimensions. This may be related to the nature of the question being presented (i.e. the subject was asked to skip question 16 i f the subject did not have sexual activity in the past 4 weeks). Another explanation could be the very personal content of this dimension, combined with the high average age o f this study sample. Since no Canadian statistics on SF-36 have been published, the mean SF-36 scores for the normal age- and sex-adjusted general U.S . population (both sex, age >18 years) reported by Ware, Snow, Kosinski and Gandek (1993) are used for comparison. The SF-36 subscales scores were, with one exception (emotional well-being scale), below the norms for the general population. This finding is consistent with other studies showing that SF-36 scores are reduced in patients with E S R D (Merkus, Jager, Dekker, DeHaan, Boeschoten, & Krediet, 2000; Painter, Carlson, Carey, Paul, & M y l l , 2000). There may have been some confounding effect o f the normal aging process as most subjects were over the age of 60. Older age was associated with lower levels o f quality of life on most sub-dimensions. Patients older than 60 years were more disabled in physical functioning than younger patients, but scored better on pain and kidney disease symptoms/problems, better quality of social interaction and general health perception. Physical functioning is o f prime importance in patients' assessments o f their global Q O L . Constraints on normal activities of daily l iving can reduce the enjoyment of close friendships, contentment with 99 family, performance and satisfaction with work, and satisfaction with life in general. Consistent with previous research that established a negative relationship between age and patients' level of physical functioning (Gulick, 1997; Ifudu et al., 1994; Ifudu, et al., 1998), this study revealed a negative relationship between age and physical functioning, indicating that older patients performed activities at lower levels compared to younger patients. These findings are not unexpected since advancing age is frequently accompanied by some degree of physical limitation even among the general population. Moreover, 42% of the sample had diabetes and 69% of the sample had hypertension. The complications of diabetes and heart failure caused by hypertension are known to diminish functional ability (Kutner et al., 2000; Merkus et al., 1997). Interestingly, the older patients often reported more satisfaction with their life on dialysis and accepted the limitations it imposed more readily than the younger age groups. The other possible explanation may be that younger persons had more unfulfilled aspirations that are thwarted by their condition. This merits further research. Gender is a significant predictor o f physical functioning in subgroups. In subgroup analyses, women reported more disability than men in physical functioning, pain, role limitations-emotional, social functioning, and sexual function. One possible reason for the difference in physical functioning scores between sexes is that, whereas men on renal replacement therapy are cared for by their wives or other family members, women are less supported, and further may not themselves perform the normal female supportive roles. This also merits further research. Education and income are two indicators of socioeconomic status most commonly used in studies of Q O L among the i l l . There was no correlation found in this study. The 100 results of this study are consistent with the previous finding (Belec, 1992; Gulick, 1997), but the influence of ethnicity on Q O L is less significant. Experts agree that Q O L is embedded in one's cultural beliefs about physical, psychological, social normalcy, and the causes and treatment of disease (Holzemer & Wilson, 1995; W H O Q O L Group, 1998). The failure of health-related quality of life to deteriorate with increasing length of time on dialysis in this study might reflect psychological accommodation in patients' life style and emotional reactions. Psychological adjustment with length of time on dialysis has been demonstrated (Carmichael, Popoola, John, Steven, & Carmichael, 2000). The 'pain' score was 17% lower than the general U S population. The patients in this study seemed to have high bodily pain thresholds. The pain may be related to renal osteodystrophy and dialysis-related arthropathy or amyloidosis. Hyperparathyroidism and other kidney-related bone disease may be synergistic with osteoarthritis in the development of bone pain, contributing to high prevalence and severity of musculoskeletal pain in long-term H D patients (Davison, 2003). Davison (2003) postulates that patients may tolerate severe pain from ischemic limbs for a considerable time in an effort to preserve a limb or defer high-risk surgery. Pain in dialysis patients often is experienced in the context of other symptoms and end-of-life issues, which may interfere markedly with psychological and physical coping skills (Davison, 2003). Because pain was the most frequently reported symptom in this study, the role of pain in the perception of patients treated with hemodialysis appears to have been under-appreciated, and better pain management for hemodialysis patients appears to be a priority to improve patient H R Q O L . 101 Patients with E S R D frequently complain of chronic fatigue, which is generally believed to be a symptom o f renal disease. Renal function, dialysis adequacy and blood levels of hemoglobin, erythropoietin and serum albumin were not assessed in this study, but may have had an impact on the level of physical functioning and fatigue or energy in dialysis patients (Kutner, et al., 2000). Chronic fatigue could be a manifestation of chronic anaemia that is common in repeated dialysis. Fatigue is also often an accompaniment of depression, and depression has been widely ascribed to dialysis patient (Cardenas & Kutner, 1982). The dimension on "work status" suffered from a high percentage of low scores. The mean score was 16% of the maximum score. A possible explanation could be the high average age of the sample, with 58% of the sample being retired and 27% on disability pension. 'Work status' also consisted of a rather limited number of items with a limited number of response categories, which could be partly responsible for the low observed psychometric results. Scores should be interpreted with caution, especially when patients over 60 years are included. Consistent with the previous studies, sleep disturbance has been long recognized as a complication of uremia and sleep complaints have been linked with diminished Q O L in patients with renal disease (Kimmel , Emont, Newmann, Danko, & Moss, 2003). This study suggested an association between sleep disturbance diminished overall health perception (r = .44, p < .05). Another possible explanation for the association between sleep disturbance and overall health perception is that patients with insomnia over-report functional impairment in a systemic fashion. This phenomenon has been described in 102 depressed patients as "negative thinking bias"(Katz, & McHorney, 2002), and it is possible that insomnia also leads to biased reporting. The correlation o f patients' perception of ' soc ia l support' with the SF-36 Health Survey (r = .44, p < .05) and Kidney Disease-targeted Multi-i tem survey (r = .62, p < .05) and most of the subscales within these two surveys approached the level of statistical significance. This finding was consistent with previous literature that social support was found to correlate with Q O L in hemodialysis patients (Kimmel , 2000; K immel , Peterson, & Weihs, 1995; Te l l , Mittelmark, Hylander, Shumaker, Russel, & Burkart, 1995). Correlation of patients' perception of satisfaction with dialysis staff encouragement with patient satisfaction scores approached the level of statistical significance. The reason may be related to the fact that patients who begin dialysis abruptly in an acute care setting are often very sick at the beginning of dialysis and may, therefore, tend to be relatively more satisfied with the care they receive (Kutner, et al., 2000). In summary, the KDQOL-SF™ scale is a practical questionnaire for measuring the health-related quality o f life of dialysis patients, although the results of the K D Q O L -SF™ scores should be interpreted with caution when the tool is used in immobilized patients, because a number of questions identified in the tool were not relevant to these subjects. Overall, the results indicate that health-related quality of life are moderately low, and worse in physical than in mental and emotional dimensions. There are low scores in bodily pain, sleep disturbance and chronic fatigue. The quality of life enjoyed by female patients does seem to be worse than that of male patients. Findings 103 demonstrated that patients who perceived high level social support generally perceived better health-related quality of life. Relationship Between Spirituality and Health-Related Quality of Life There was no statistical correlation between the perception of health-related quality of life and spirituality. This finding did not confirm the results in the meta-analysis by Sawatzky and associates (2005). A number of factors may have influenced the correlation between spirituality and quality of life in this study. The tool used to measure spirituality may not be sufficiently well developed. The fact that the spirituality instrument was written in English and may not be understood by individuals from all cultural groups, that there was a bi-modal distribution relevant to age, one-third of the sample had been on hemodialysis for less than one year, over 40% of the sample only attained an education less than grade 12 level, and the subjects' perception of spirituality may be different from the definition used in this study may all have contributed. The tool used to measure health related quality of life may be valid and reliable, but this instrument may not be suitable, to a certain extent, for use in this sample. Some o f the questions were not appropriate for E S R D patients who were very sick, bed ridden, wheelchair bound, or requiring assistance or walkers for mobility. In this study factors pertaining to demographic characteristics and co-existing comorbid conditions were not controlled. Sawatzky and associates (2005) reported that the 27% of variance among primary effect sizes in his meta-analysis might be related to the moderating effects of other factors in action. Sloan, Bagiella and Powell (1999) emphatically discuss the need for controlling demographic factors, social factors and 104 behavioral factors in examining any effect o f spirituality on health-related constructs. They argue that "failure to control for these factors can lead to biased estimation of this association" (p.665). In the presence of bi-modal age distribution and a wide variability of age and, education level, length of time on hemodialysis, low household income, and high percentage of subjects on retirement and disability pension, these may explain the lack of statistical correlation between spirituality and health-related quality o f life. The other possible reason may be related to the sample size. Since the quality of life of E S R D patients has been described as low in many studies, the convenience sampling for only 88 subjects with completed questionnaires may not be adequate to provide sufficient variability of each variable to obtain a valid result (Cohen, 1988). The finding of small correlation between spirituality and education and household income was not consistent with the previous study which indicates that individuals with higher education may be more prone to question their religious/spiritual beliefs when confronted with a disruptive life event, and that may lead to a decline in spirituality ( K i m etal.,2000). Despite of the lack of statistical correlation between spirituality and health-related quality of life except in the older age group, correlation was present between spirituality, general health and energy/fatigue. This finding is consistent with previous studies (Meisenhelder & Chandler, 2000; Ri ley et a l , 1998). The direction and the magnitude of the relationship suggested small correlations between spirituality and general health (r = .22, p < .05), and energy level (r = .30, p < .05). There was large correlation between general health perception and energy/fatigue (r = .54, p_ < .05). 105 Although no studies were found in the literature that specifically examined the relationship between spirituality and health-related quality of life in chronic hemodialysis patient, there was one study by Patel and associates (2002), which examined the psychosocial variables, quality o f life and religious beliefs in E S R D patients treated with hemodialysis. Two other studies were found that measured the relation between spirituality and quality o f life in chronic illness (Riley et al., 1998), and rheumatoid arthritis (Bartlett et al., 2003). Because these researchers used different combinations of instruments to assess spirituality and quality o f life, their findings are difficult to compare with this study, however, supporting evidence for various components can be identified. One possible reason for the positive relation between spirituality, general health and energy/fatigue found in this study may be related to the cognitive (philosophical) function of spirituality. The cognitive aspects include the search for meaning, purpose and truth in life and the beliefs and values by which an individual lives (Anandarajah, & Hight, 2001; Chiu , et al., 2004). In this study, spirituality was associated with higher self-ratings of health and energy level, but not with disease activity, suggesting that spirituality may play an independent role in helping individuals with chronic illness attend to positive elements in their life (Bartlett, et al., 2003). In chronic hemodialysis patients, spiritual transcendence may reflect the tendency to experience more positive feelings and actively seek a broader sense o f meaning and purpose of their illness. In turn, this may facilitate acceptance and reformation of life priorities, resulting in better adaptation to l iving with illness (Bartlett, et al., 2003). B y viewing their illness in a positive context, spiritual E S R D patients may be more resilient to the challenges imposed 106 by kidney disease and believe that they would be fine despite illness (Patel et al., 2002; Riley etal . , 1998). Another plausible reason for the positive relation between spirituality, general health and energy/fatigue may be related to the experiential (emotional) function of spirituality. The experiential aspects of spirituality involve feelings of hope, love, connection, inner peace, comfort and support and these are reflected in the quality o f an individual's inner resources (Anandarajah, & Hight, 2001; Chiu et al., 2004). People who perceive health, both physical and psychological, as sacred are likely to treat this dimension of life with respect and care (Pargament & Mahoney, 2002). Moreover, the sense of sacredness may represent an important source o f strength, meaning, and coping. Levin and Chatters (1998) postulate that a spiritual orientation has been associated with health-promoting behaviors and lifestyles that result in lower relative risks of disease and enhanced well-being. With a hope of a cure the spiritual orientation may provide social support, act as a buffer against stress, and facilitate an existential coping mechanism (Hawkett, 1997; Patel et al., 2002) that may impact on the physical well-being of an individual with E S R D and have the potential to precipitate positive health change. Another possible reason for this relation may be related to the behavior function of spirituality. The behavior aspects o f spirituality involve the way a person externally manifests individual spiritual beliefs and an inner spiritual state through a personal relationship with the divine or through a connection to nature (Anandarajah & Hight, 2001; Chiu et al., 2004). Attachment theorists have likened God to an attachment figure (Kaufman, 1981; Kirkpatrick, 1995). Attachment theory suggests that people who experience a secure connection with God should also experience greater comfort and 107 greater strength in stressful situations (cited in H i l l , & Pargament, 2003). Measures of religious coping that reflect a secure relationship with God have been tied to better self-rated health (Krause, 1998, Meisenhelder & Chandler, 2000). Thus, an orientation to spirituality can offer a sense of ultimate destinations in living. Through access to a wide array of religious coping methods (e.g. spiritual support, meditations, religious appraisals, rites of passage), these destinations can become spiritual striving and result in self-empowerment to cope with the current stress until adaptation takes place (Emmons, 1996). Therefore spirituality may facilitate psychological adjustment and resilience in people with E S R D by experiencing more positive feelings in general health and energy level. In summary, there was no correlation between the perception of spirituality and health related quality o f life, except a small correlation present in the older age group by using one-tailed test analysis. The lack of statistical correlation between spirituality and health related quality of life appeared to be related to the sample characteristics relevant to the bi-modal age distribution, education level of the subjects, and length of time on hemodialysis. Other possible reasons may be related to the psychometric property of the tools used in this study and failure to control factors pertaining to demographic characteristics and co-existing comorbid conditions. A small correlation however was present among spirituality, general health and energy/fatigue. Possible reasons for the correlations may be related to the philosophical, emotional and behavioral functions of spirituality, that may facilitate psychological adjustment and resilience in hemodialysis patients by experiencing positive feelings in general health and energy level despite illness. 108 Summary This study was implemented to describe the perceptions of health-related quality of life and spirituality in hemodialysis patients and to explore the relationship between spirituality and health-related quality of life of patients l iving in a long-term chronic kidney disease situation. The impetus for this study arose from this researcher's clinical observations. In addition, there is a distinct lack of reported investigation on the relationship these variables have for patients in this situation. It was recognized that a study was needed to generate baseline knowledge that could provide new directions for the provision of effective health care to these individuals. When researching spirituality and health-related quality of life, it is necessary to obtain self-report data that describes the experience from the perspective of the individual. Answers to three major research questions were examined in order to describe and explore the relationship between spirituality and health-related quality o f life in long-term hemodialysis patients. Because living with end-stage renal disease can be regarded as a stressful experience, the conceptual framework used in this study, Lazarus and Folkman's Coping theory (1984) was appropriate and provided useful direction for the interpretation and discussion of the findings o f this research. This descriptive correlational study was conducted in a province in western Canada. Ninety-eight patients who met the criteria from a hemodialysis unit in a large urban teaching hospital, completed the questionnaires during one session o f hemodialysis treatment. The revised Spiritual Involvement and Beliefs Scale (SEBS-R) was used to measure spirituality, while the Kidney Disease Quality of Life Short Form ( K D Q O L -SF™) was used to measure health-related quality of life. These respondents were English 109 speaking, adult, end-stage renal failure patients who received hemodialysis three months prior to the study. Confidentiality was maintained for the subjects. Perceptions of spirituality and health-related quality of life were measured at only one point in time. O f the 98 subjects, 10 patients did not complete the Spiritual Involvement and Bel ie f Scale. The analysis and reporting of the findings were based on the 88 cases. There was no statistical difference in demographic characteristics and the health-related quality of life (KDQOL-SF™) scores between the group of participants who completed the questionnaires and those who did not. A l l patients had E S R D and had been on hemodialysis from three months to twenty-five years prior to the study. The age of subjects ranged from 24 to 92. There were 51 males and 37 females. Only 10% of the sample was employed in either part-time or full-time jobs while 58% was retired. Forty-one percent of the sample had attained less than grade-12 education. Almost 70% indicated the presence o f health or medical problems aside from their kidney disease. Hypertension and diabetes were the most frequently reported causes of the kidney disease. While the response rate obtained in this study (74.2%) represented a good rate considering the high acuity and patient turnover rate in an acute tertiary hospital setting, it is not known whether respondents differed from non-respondents in significant ways. It seemed that this sample was reasonably representative of both provincial and national samples in hemodialysis. Overall, chronic hemodialysis patients perceived moderately low levels of spirituality as measured by the revised Spiritual Involvement and Beliefs Scale. Findings demonstrated that there was variability in the level of spirituality perceived by the study 110 sample. The factors analysis of the SLBS-R indicated that the factor items in personal application/humility, acceptance/insight and spiritual perspective/existential reflected the highest spirituality. This finding revealed the subjects to be more inclined to apply spiritual principles in their daily life through interconnecting with the transcendence and accepting things as they were. A number of factors may have influenced the moderately low score on spirituality scale. The fact that spirituality instrument was written in English and may not be understood by individuals from all cultural groups, there was a bi-modal distribution relevant to age, one-third of sample had been on hemodialysis for less than one year, over 40% of the sample only attained an education at less than grade 12 level and the subjects' perception of spirituality may be different from the definition used in this study may all have contributed. The theory of stress and coping helped to explain possible reasons for the low level o f spirituality. The nature of the low level of spirituality experienced by the study appeared to be associated with factors such the unstable condition of the irreversible chronic illness that individuals with chronic renal failure may be more concerned with physiological needs rather than being focused on their spiritual life; a function of clinical and technological advances in hemodialysis; perception o f optimism stemming from renewed health after initiation of hemodialysis; and problem-oriented coping methods. Although the majority of subjects had low levels, some subjects experienced moderate to high levels of spirituality. Possible explanations for high levels of spirituality included factors such as chronic concerns regarding general health and kidney function; educational level; and, developmental tasks and life experiences. I l l The health-related quality of life was measured by the Kidney Disease Quality o f Life Short-Form Scale. These chronic hemodialysis patients perceived moderately low levels of health-related quality of life, and lower levels in physical than in mental and emotional dimensions. Women reported more disability than men in physical functioning, pain, role limitations-emotional, social functioning. Patients older than 60 years were more disabled in physical functioning than younger patients. The study did not find a correlation between the perception of spirituality and health-related quality of life (r = . 14, p_ < .05,2-tailed). Patients with high level of spirituality generally perceived better general health and higher energy levels. The direction and magnitude of the relationship suggested a small correlation between spirituality and general health (r = .22, p < .05), and energy level (r .30, p < .05). These findings were consistent with other studies. Limitations Many of the limitations of this study were related to the study design, study tools and the sample. The following limitations were recognized. 1. Perceptions of health related quality of life and spirituality were measured at only one point in time. Perceptions are dynamic in that they may change with time or disease progression, and a one-time measurement would not allow for seeing a change in the sample. I chose to study subjects at one point in time even though it would have been ideal to examine the subjects' perspectives over time. 112 2. The study did not control for demographic factors such as age, education level, household income, length of time on hemodialysis and co-existing comorbid conditions that may result from or associated with E S R D . These factors may influence the subjects' perceptions of spirituality and health related quality o f life. 3. The religious affiliation was not identified for the study. It was an oversight not to have asked information about subjects' religious affiliation, even though that was not the main focus of this study. Religious affiliation may influence the subjects' perceptions of spirituality. 4. Because reading and comprehension of English was necessary to complete the questionnaire, subjects who do not understand English were likely excluded. 5. The spirituality instrument in the study was written in English, which may not be understood by individuals from all cultural groups. The subjects' perception o f spirituality may be different from the definition used to describe spirituality in this study. 6. The focus o f this study was the adult on chronic hemodialysis and as such, the findings w i l l not be generalizable to children or adolescent undergoing long-term hemodialysis, and to other adults. 7. The questionnaires were completed in the hemodialysis unit during the dialysis treatment. The subjects may have been too tired to complete the questionnaires. 113 8. Convenience sampling might introduce sources of bias and affect generalizability. Subjects were recruited from only one hemodialysis unit that had own protocols, characteristics and treatment regimes. Nevertheless, this was the nature of the sample that was available for the study. Conclusions Based upon the findings of this research, some tentative conclusions can be made. Although sampling was done that included patients who had been on hemodialysis for over three months prior to the study, a response rate of 74% represents a good rate considering the high acuity and patient turnover rate in an acute tertiary hospital setting. Despite of having 10 respondents not completing the questionnaires on spirituality, it is not known whether respondents differ from non-respondents in significant ways. Findings o f this study indicated that there was no correlation between spirituality and health related quality of life in hemodialysis patients. This finding does not support results of other research studies with subjects having other medical disorders. Nevertheless, conclusions should still be interpreted cautiously when generalizing to hemodialysis patients in other institutions. Overall, these long-term hemodialysis patients perceived a moderately low level of spirituality. The findings appeared to be related to the sample and methodological issues. Some subjects appeared to have difficulty in understanding the tool to measure spirituality. The fact that the spirituality instrument was written in English and may not be understood by individuals from all cultural groups, there was a bi-modal distribution 114 relevant to age and education, one-third o f sample had been on hemodialysis for less than one year, over 40% of the sample only attained an education at less than grade 12 level and the subjects' perception of spirituality may be different from the definition used in this study. The psychometric quality o f the spirituality tool and the lay out o f the questionnaire may have influenced the spirituality score. Because l iving with E S R D can be a stressful experience, the stress and coping theory of Lazarus and Folkman (1984) helped to explain possible reasons for the moderately low spirituality scores. The low level of spirituality appeared to be related to a function of clinical technology advances in hemodialysis field; optimism stemming from the subjects' improved health; and a function of problem-oriented coping methods. The acute hospital setting where majority of the patients were in unstable conditions might influence the spirituality scores, because these patients were likely concerned more with physiological needs rather than focused on their spiritual lives. Long-term hemodialysis patients perceived moderately low levels of health related quality of life and worse in physical than in mental and emotional dimensions as compared with the general population. The quality o f life enjoyed by females does seem to be worse than males. Findings demonstrated that patients who perceived high level o f social support perceived better health quality of life. There was no correlation between the perception of spirituality and health related quality of life. Possible reasons may be related to the psychometric quality of the spirituality tool, sample characteristics and failure to control factors pertaining to demographic factors and coexisting comorbid conditions. These factors may lead to biased estimation of the association. In the presence o f bi-modal distribution of age and 115 education, these may contribute to the lack o f correlation between spirituality and health related quality o f life. Spirituality scores were not correlated to length of time on hemodialysis. Nevertheless, a small correlation was present among spirituality, education, household income, general health perception and energy level. Possible reasons for these small correlations may be related to the philosophical, emotional and behavioral functions of spirituality. Because nurses provide support and services to individuals from a wide range of cultures, a part o f their practice should be to provide a supportive environment, and try to design interventions, that w i l l permit the patient to express his/her spirituality or religion. Such support would help to improve health outcomes. A s the life expectancy of individuals with E S R D continues to increase, the role of the nurse in maintaining and enhancing patients' health-related quality of life is important as this plays a key role in the well-being of people with severe illness. Thus, there is an important role for nurses in optimizing the health-related quality of life o f hemodialysis patients. Nurses can incorporate research findings in their practice to promote the holistic health of patients. In addition, the instrument used to measure health-related quality of life (KDQOL-SF™) in this study could be incorporated into nursing practice to be used as a nursing tool. Implications Although the findings of this study are not generalizable, they suggest many implications for the provision o f nursing care to adult hemodialysis patients. Implications for nursing practice and theory w i l l be presented in the following sections. 116 Nursing Practice and Theory A s the life expectancy of individuals with E S R D continues to increase, maintaining and enhancing patients' health-related quality of life is important because it has been found to play a key role in determining survival among people with severe illness. A s nurses are spending more time with the patients than other health care professionals, they are in a position to safeguard the wholeness and integrity of the patients and have an important role in optimizing the health-related quality of life of hemodialysis patients. Thus nurses can incorporate research findings into their practice and in this way promote the holistic health o f patients. The instrument used to measure health-related quality of life (KDQOL-SF™) in this study could be used as initial and regular subsequent nursing tools, although the results of the KDQOL-SF™ scores should be interpreted with caution when this instrument is used for immobilized patients because a number of questions identified in the tool were not suitable to these subjects. For example, unexplained low physical function and role physical scores prompt referral for physical therapy evaluation. Mental health scores can become data points considered for possible depression. The health status profile as a whole can serve the staff as an introduction to new patients and offer an objective-screening tool by which to identify patients who are impaired or at risk. Thus the KDQOL-SF™ could serve not only a measure of present H R Q O L but furthermore as an instrument to predict long-term quality of life. Taking long-term approaches in patient care into account, the KDQOL-SF™ could serve as a valuable inventory for detection of present distress and negative long-term impact on H R Q O L of hemodialysis patients. 117 Because spirituality is often interwoven with all aspects of life, there is a need for the health professional to attend to the spiritual needs o f the patients in the course of assessment and intervention. Religious faith and practices are valuable coping skills for many people and they appear to exert a positive influence on H R Q O L (Mickley, Soeken & Belcher, 1992; Peri, 1995). Nurses are in a unique position to demonstrate the art of providing support and services to diverse individuals by using cultural norms as a part of their practice framework. A s indicated in the findings in this study, the spirituality score was moderately low in this sample o f hemodialysis patients; however, the nurse should provide a supportive environment and try to design interventions that w i l l permit the patient to express his/her religion. This implies that the nurses' role is to include the assessment of patients' usual spiritual coping strategies, to help them cope with the demands of illness. It also is important for the health care professionals to have a broad enough view of spirituality to accommodate the diverse religious views of patients, a wider recognition of the spiritual domain, less confusion between the spiritual and the religious, and more staff training (McSherry & Draper, 1998; Reed, 1992). Such recognition and support would help to improve health outcomes (Mathews et al., 1998). A s the spiritual dimension in care is complex (Mansen, 1993; Ross, 1994) the nurse should work in collaboration with the multidisciplinary team, including the physicians, hospital chaplains, social workers and volunteers, so as to meet the spiritual needs of both believers and nonbelievers. In the hospital, there should be wider recognition of the chaplains coordinating role, increased resources, better networks, and a regional office to support chaplaincy. 118 Nursing Education While the ability to generalize the results of this study is limited, the findings suggest the possible need for a revision in health professional education to include spirituality as part of assessment and intervention. Although the role of spirituality in health is receiving more attention in recent years, most health professional education curricula do not address clinical intervention with respect to patients' spirituality (Larson, Pattison, & Blazer, 1986). Thus it is recommended that education modules on holistic care, should include the spiritual dimension and be included in the pre- and post-registration nursing education. Recommendations for Further Research The current study was limited by the study design in that it did not allow seeing a change in the sample. A cross-sectional design measures at only one point in time and is restricted in its ability to more fully assess subjects' perceptions of health-related quality of life and spirituality that are dynamic and may change with time or due to disease progression. In future studies, a longitudinal approach would lead to a more comprehensive understanding of the relationship between spirituality and quality o f life over the course of patients' experiences with chronic kidney disease. This can be done by observing and measuring these variables when individuals are first diagnosed with chronic kidney disease ( C K D ) , and then following them over time such as every six months. The subjects may be too tired to complete the questionnaires during hemodialysis treatment, and that may be the reason for the high percentage (10%) o f potential subjects 119 who declined to complete the spirituality instrument that was placed in the last part of the study tool. In the future research, it is recommended to conduct the data collection between, rather than during, dialysis treatments. The vigilance of the investigator is vital to ensure returned questionnaires are complete. Since data collection was limited by existing items and the corresponding response set associated with the study instruments, subjects were not able to self-define spirituality and responses may have provided a narrow description of the actual level of spirituality. In the future studies, it is recommended that the investigator examine the meaning or lived experience of spirituality in the context of the trajectory of C K D using both quantitative and qualitative research methods be examined. In addition, this study did not control for factors such as demographic factors and co-existing comorbid conditions that may confound subjects' perceptions of spirituality and health-related quality of life. Although the relationship between spirituality and health outcomes seems valid, it is difficult to establish causality because this study was a correlational analysis of cross-sectional data. In addition, the correlations in this study only assessed bivariate and baseline relationships; thus, they cannot define directionality. In a future study, it is recommended that control o f demographic factors, religious affiliations and comorbid conditions be implemented. The measurement tools used may not be valid and reliable with individuals from all cultures. There are limitations identified in the tool to measure spirituality (SLBS-R) that need to be strengthened. It is recommended to further examine the items used in the questionnaire and to make them more relevant to this population of interest, as well as tested in different cultural groups. The tool used to measure the health related quality of 120 life (KDQOL-SF™) may be valid and reliable, however, the results of the KDQOL-SF™ scale should be interpreted with caution when this is used with subjects who have difficulty in mobility. In this study, the nature of the convenience sample in a single hemodialysis unit that has its own protocol, and a wide variability in age, education level and the length of time on hemodialysis may also affect the study result. The criterion o f English literacy did not allow a clear picture of the cultural dimension in the sample. The convenience sample used may not have been representative of the population of chronic hemodialysis patients. The use of a convenience sampling also limits inferences about the findings. The subjects were volunteers and relatively homogeneous in terms of race with 7 9 % of the sample being Caucasian. Those who decided not to participate may have provided valuable information for the study. Finally, Since the quality o f life of E S R D patients has been described as low in many studies, the convenience sampling for only 8 8 subjects with completed questionnaires may not be adequate to provide sufficient variability o f each variable to obtain a valid result. In the future research, in order to obtain greater reliability of both spirituality and quality of life measures, it is recommended to use a random selection from a larger population located in multiple hemodialysis centers, and to use instruments validated in different translations for multicultural groups i f they are available. 121 REFERENCES Allport, G.W. , & Ross, J . M . (1967). Personal religious orientation and prejudice. Journal of Personality and Social Psychology, 5 (4), 432-443. 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The moderating relationship of spirituality on negative life events and psychological adjustment. Counseling and Values, 45,49-54. Zinnbauer, B . J . , Pargament, K . L . , & Scott, A . B . (1999). The emerging meanings of religiousness and spirituality: Problems and prospects. Journal of Personality, 67, 889-919. Zuckerman, D M . , Kas l , S.V., & Ostfeld, A . M . (1984). Psychosocial predictors of mortality among the elderly poor. The role of religion, well being, and social contacts. American Journal of Epidemiology, 119,410-423. 140 APPENDIX A. SPIRITUAL INVOLVEMENT AND BELIEF SCALE-REVISED (SIBS-R) The following items are about your spiritual involvement and beliefs. H o w strongly do you agree with the following statements? Please circle your response. Strongly Mildly Mildly Strongly Agree Agree Agree Neutral Disagree Disagree Disagree 1. I set aside time for meditation and/or self-reflection 1 2. I can find meaning in times of hardship. 3. A person can be fulfilled without 7 pursuing an active spiritual life. 4. I find serenity by accepting things as they are 5. I have a relationship with someone 7 6 I can turn to for spiritual guidance. 6. Prayers do not really change what happens. 7. In times of despair, I can find little reason to hope. 8. I have a personal relationship 7 with a power greater than myself. 9. I have had a spiritual experience 7 that greatly changed my life. 10. When I help others, I expect nothing in return. 11.1 don't take time to appreciate nature. 141 Strongly Mildly Mildly Strongly Agree Agree Agree Neutral Disagree Disagree Disagree 12.1 have joy in my life because of my spirituality. 13. My relationship with a higher power helps me love others more completely. 14. Spiritual writings enrich my life. 7 15.1 have experienced healing 7 after prayer. 16. My spiritual understanding continues to grow. 17.1 focus on what needs to be changed in me, not on what needs to be changed in others. 18. In difficult times, I am still grateful. 19.1 have been through a time of suffering that led to spiritual growth. 20.1 solve my problems without using spiritual resources. 21.1 examine my actions to see if they reflect my values. 22. How spiritual a person do you consider yourself? (with '7' being the most spiritual) 7 6 5 4 3 2 1 Thank you for taking part in this study 142 A P P E N D I X B . K I D N E Y D I S E A S E Q U A L I T Y O F L T F E S H O R T F O R M ( K D Q O L - S F ™ ) Y o u r H e a l t h This survey includes a wide variety of questions about your health and your life. We are interested in how you feel about each of these issues. 1. I n g e n e r a l , w o u l d y o u s a y y o u r h e a l t h i s : [ M a r k a n [__ i n t h e o n e b o x t h a t b e s t d e s c r i b e s y o u r a n s w e r . ] Excellent Very good Good Fair Poor • • T T T • l D 2 _ _ 3 _ _ 4 _ _ 5 C o m p a r e d t o o n e y e a r a g o , h o w w o u l d y o u r a t e y o u r h e a l t h i n g e n e r a l n o w ? M u c h better Somewhat About the Somewhat M u c h worse now than one better now same as worse now now than one year ago than one year one year ago than one year year ago ago ago T T T T T • l __|2 _ _ 3 _ _ 4 _ _ 5 143 The following items are about activities you might do during a typical day. Does your health now limit you in these activities? If so, how much? [Mark an CX] in a box on each line.] Vigorous activities, such as running, lifting heavy objects, participating in strenuous sports Yes, limited a lot T b Moderate activities, such as moving a table, pushing a c Lifting or carrying groceries |_~] d Climbing several flights of stairs |_~] h Walking 500 metres • Yes, N o , not limited limited a little at al l T • • 2 • • 3 • l . . . . D 2 • • l . . . . • • • l . . . . D 2 • • l . . . . D 2 • • l . . . . D 2 • • l . . . . D 2 • • l . . . . D 2 • • l . . . . D 2 • • l . . . . D 2 n 144 4. During the past 4 weeks, have you had any of the following problems with your work or other regular daily activities as a result of your physical health? Yes N o T T a Cut down on the amount of time you spent on work or other activities? • 1 • 2 b Accomplished less than you would have liked? __ 1 1 I 2 c Were limited in the kind of work or other activities? __ 1 1 I 2 d Had difficulty performing the work or other activities (for example, it took extra effort)? __ 1 1 I 2 5. During the past 4 weeks, have you had any of the following problems with your work or other regular daily activities as a result of any emotional problems (such as feeling depressed or anxious)? | Yes N o • • a Cut down on the amount of time you spent on work or other activities? • 1 • 2 b Accomplished less than you would like? __ 1 1 12 c Didn ' t do work or other activities as carefully as usual? 145 6. During the past 4 weeks, to what extent has your physical health or emotional problems interfered with your normal social activities with family, friends, neighbours, or clubs? Not at all Slightly Moderately Quite a bit Extremely • • T T • • i D 2 _ _ 3 _ _ 4 n s 7. How much bodily pain have you had during the past 4 weeks? Very Very None ^ - j ^ j ^ - j ^ Moderate Severe severe T • T T • T • i [_|2 _ _ 3 _ _ 4 _ _ 5 _ _ 6 8. During the past 4 weeks, how much did pain interfere with your normal work (including both work outside the home and housework)? Not at all A little bit Moderately Quite a bit Extremely • T • T T • l D 2 __3 D 4 ns 146 These questions are about how you feel and how things have been with you during the past 4 weeks. For each question, please give the one answer that comes closest to the way you have been feeling. How much of the time during the past 4 weeks... a D i d you feel full o f life? A good A l l Most bit Some of the of the of the ofthe \ time time time time T T • T n i . . . D 2 . D 3 . . . D 4 . . . A little o f the time g D i d you feel worn out?. None ofthe time b Have you been a very nervous person? • 1 • 2 • 3 • 4 • 5 • 6 c Have you felt so down in the dumps that nothing could cheer you up? D l D 2 Q 3 Q 4 Q 5 Q 6 d Have you felt calm and peaceful? • 1 C]2 Q 3 D 4 Q 5 \J6 e D i d you have a lot of energy/ D l D 2 D 3 D 4 D 5 D 6 f Have you felt downhearted and unhappy? D l D 2 [ ] 3 E M [_]5 E ] 6 • • l D 2 D 3 D 4 D 5 D 6 h Have you been a happy person? D l D 2 D 3 Q 4 D 5 D 6 i D i d you feel tired? • 1 Q 2 Q 3 Q 4 Q 5 Q 6 147 10. During the past 4 weeks, how much of the time has your physical health or emotional problems interfered with your social activities (like visiting with friends, relatives, etc.)? A l l Most Some A little None of the time of the time of the time of the time of the time T • T T T • l • 2 • 3 • 4 • 5 11. Please choose the answer that best describes how true or false each of the following statements is for you. Definitely Mostly Don' t know Mostly false Definitely true true false a I seem to catch things a little • • • • • more easily than other people D l [_]2 _ _ 3 _ _ 4 _ _ 5 b I am as healthy as anybody I know D l _ _ 2 _ _ 3 _ _ 4 _ _ 5 c I expect my health to get worse __1 _ _ 2 _ _ 3 __4 _ _ 5 d M y health is excellent • 1 • 2 • 3 • 4 • 5 148 Your Kidney Disease 12. How true or false is each of the following statements for you? Definitely Mostly Don' t know Mostly false Definitely true true false a M y kidney disease interferes • • • too much • • with my life D i D 2 _ _ 3 D 4 _ _ 5 b Too much of my time is spent dealing with my kidney disease • 1 • 2 • 3 • 4 • 5 c I feel frustrated dealing with my kidney disease • 1 • 2 • 3 • 4 • 5 d I feel like a burden on my family __1 _ _ 2 _ _ 3 _ _ 4 _ _ 5 149 13. These questions are about how you feel and how things have been going during the past 4 weeks. For each question, please give the one answer that comes closest to the way you have been feeling. How much of the time during the past 4 weeks... D i d you isolate yourself from people around you? A good None A little Some bit ofthe Most A l l ofthe ofthe ofthe time ofthe ofthe time time time time time T T T T T T . . • l . . . rj2 . . . • 3 . . . D 4 . . . . • • • • 5 . . . r i 6 D i d you react slowly to things that were said or done? • • i D 2 D 3 D 4 Us D 6 c D i d you act irritable toward those around you? D i D 2 D 3 Q 4 D s D 6 d D i d you have difficulty concentrating or thinking? . • l D 2 D 3 D 4 D 5 D 6 e D i d you get along well with other people? D l \J2 D 3 [_]4 [ ] 5 Q 6 f D i d you become confused? • • i D 2 Q 3 D 4 D 5 D 6 150 14. During the past 4 weeks, to what extent were you bothered by each of the following? Not at all Somewhat Moderately Very much Extremely bothered bothered bothered bothered bothered • • • • • a Soreness in your muscles? • 1 [ _ 2 • 3 _ _ 4 _ _ 5 b Chestpain? __1 __2 _ _ 3 E M _ _ 5 c Cramps? __1 |__2 _ _ 3 _ _ 4 _ _ 5 d Itchy skin? D l __2 _ _ 3 _ _ 4 _ _ 5 e Dry skin? D l __2 _ _ 3 _ _ 4 _ _ 5 f Shortness of breath?... D l _ _ 2 _ _ 3 __4 _ _ 5 g Faintness or dizziness? • 1 • 2 • 3 • 4 • 5 h Lack of appetite? __1 [ _ 2 Q 3 Q 4 __J5 i Washed out or drained? D l D 2 D 3 D 4 [ _ 5 i Numbness in hands or feet? D l D 2 D 3 D 4 D 5 k Nausea or upset stomach? • 1 • 2 • 3 • 4 • 5 1 (Haemodialysis patient only) Problems with your ,_ . p—, access site? D l D 2 D 3 D 4 D 5 m (Peritoneal dialysis patient only) Problems with your __, _ _ . ,—, „ catheter site?.... D l U2 D 3 D 4 _ _ 5 151 Effects of Kidney Disease on Your Daily Life 15. Some people are bothered by the effects of kidney disease on their daily life, while others are not. How much does kidney disease bother you in each of the following areas? Not at al l Somewhat Moderately Very much Extremely bothered bothered bothered bothered bothered • T T T T a Fluid restriction? • 1 • 2 • 3 • 4 • 5 b Dietary restriction? D l • 2 • 3 • 4 • 5 Your ability to work around the house? d Your ability to travel? e Being dependent on doctors and other medical staff? . • l D 2 D 3 D4 Q 5 . • l D 2 D 3 D 4 D 5 . • l D 2 D 3 D 4 D 5 f Stress or worries caused by kidney disease? • 1 C U Q 3 [_]4 [_l5 g Your sex life? D l Q 2 Q 3 E U Q 5 h Your personal appearance? • 1 • 2 • 3 • 4 • 5 152 16. The next two questions are personal and relate to your sexual activity, but your answers are important in understanding how kidney disease impacts on people's lives. How much of a problem was each of the following in the past 4 weeks? Not a problem a Enjoying sex? __ 1 Somewhat of Very A little a problem much a problem problem • T T . • 2 . • • 3 . • • 4 Severe problem • ns b Becoming sexually aroused? • • l • • 2 . • • 3 . • • 4 • • 5 17. For the following question, please rate your sleep using a scale ranging from 0 representing "very bad" to 10 representing "very good". If you think your sleep is half-way between "very bad" and "very good," please mark the box under the number 5. If you think your sleep is one level better than 5, mark the box under 6. If you think your sleep is one level worse than 5, mark the box under 4 (and so on). On a scale from 0 to 10, how would you rate your sleep overall? [Mark an __ in one box.] Very bad T 0 Very good • 10 153 18. How often during the past 4 weeks did you. Awaken during the night and have trouble falling asleep again? A good None A Little of Some bit Most A l l ofthe the time ofthe ofthe ofthe ofthe time time time time time T T T T T T D 2 . . . . • 3 D 4 . . \J5... D 6 b Get the amount of sleep you need? • l D 2 D 3 D 4 D 5 D 6 c Have trouble staying awake during the day? • 1 • 2 • 3 • 4 • 5 • 6 19. Concerning your family and friends, how satisfied are you with... Very Somewhat Somewhat |dissatisfied dissatisfied satisfied The amount of time you are • • • able to spend with your family and friends? • 1 • 2 • 3, Very satisfied T D 4 The support you receive from your family and friends? O i . • 2, • 3 • • 4 154 20. During the past 4 weeks, did you work at a paying job? Yes • N o T • l • 2 21. Does your health keep you from working at a paying job? Yes T N o • • l • 2 22. Overall, how would you rate your health? Worst possible Half-way Best (as bad or worse between worst possible than being dead) and best health T • T 0 1 1 2 3 4 \ 5 6 7 8 9 10 155 Satisfaction With Care 23. Think about the care you receive for kidney dialysis. In terms of your satisfaction, how would you rate the friendliness and interest shown in you as a person? Very poor T Very good Poor T Fair T Good T Excellent T The Best T • l • 2 • 3 • 4 • 5 • 6 • 7 24. How true or false is each of the following statements? Definitely true Dialysis staff • encourage me to be as independent as possible D i Mostly true Don't know . • 2 . • • 3 Mostly false Definitely false T T • 4 • • 5 Dialysis staff support me in coping with my kidney disease • • l - • 2 . • • 3 • 4 • • 5 Thank you for completing these questions! 156 Background Information 25. Do you currently take prescription medications regularly (4 or more days a week) that are prescribed by your doctor for a medical condition? Please don't count over the counter medications like antacids or aspirin. (Circle one Number) N o 1 Please skip to Question 26 Yes 2 25a. How many different prescription medications do you currently take? Number of Medications: _____ 26. How many days total in the last 6 months did you stay in any hospital overnight or longer? (If none, please write in 0) Number of Days: 27. How many days total in the last 6 months did you receive care at a hospital, but came home the same day? (If none, please write in 0) Number of Days: 28. What caused your kidney disease? (Circle All That Apply) Don't know 1 Hypertension (High Blood Pressure) 2 Diabetes 3 Polycystic Kidney Disease 4 Chronic Glomerulonephritis 5 Chronic Pyelonephritis 6 Other (please specify): 7 157 29. When were you born? Month / Day / Year 30. What is the highest level of education you have completed? (Circle one Number) < High School 1 High School Grad 2 Some College 3 College + 4 31. What is your gender? (Circle one Number) Male 1 Female 2 32. How do you describe yourself? (Circle one Number) African American 1 Asian 2 South Asian 3 Caucasian 4 Other (please specify) 5 33. Are you currently married? (Circle one Number) N o 1 Yes 2 158 34. During the last 30 days, were you: (Circle one Number) Working full-time. Working part-time Unemployed .1 2 .3 4 5 .6 Retired Disabled None of the above 35. What was your total household income (from all sources) before taxes in the LAST CALENDAR YEAR, including yourself, your partner, and others you regard as family who live in your household? (Please remember your answers are confidential). (Circle one Number) Less than $5,000 1 $5001 -$10,000... $10,001 -$20,000 $20,001 -$40,000 > $40,000 2 3 4 5 36. When did you start hemodialysis? Month / Day / Year 37. What is today's date? Month: Day: Year: Thank you for taking part in this study. 160 APPENDIX D. INFORMATION RELEASE FORM fraserhealth Better health. Best in health care. Project Title: Spirituality and Quality of Life in Hemodialysis Patients Information Release Form / have read the introduction letter and am interested in talking to you about the study and my involvement. I authorize the contact person to release the following information. Name: Telephone: (day) (evening) Signature: Assistance to respond to the questionnaire: Yes No 163 withdrawal from the study w i l l be possible without prejudice to further treatment. Your signature below indicates that you agree to take part in this study and you have received a copy of this consent form for your own records. B y signing this consent form, you do not waive any of your legal rights. Title of Study: Spirituality and Quality of Life in Hemodialysis Patients I have read the above information and I have had a chance to ask any questions about the study and my involvement. I understand what I have to do and what w i l l happen i f I take part in this study. I freely choose to take part in this study and I have a copy of the consent form. Signature of Participant Printed name Date Signature of Witness Printed name Date Signature of Principal Investigator Printed Name Date *Please indicate that you would like to receive a brief summary of the findings by providing your address in the space below. APPENDIX F. CHARACTERISTICS OF PREVALENT ESRD DIALYSIS PATIENTS (B. C.) Characteristics of Prevalent E S R D Dialysis Patients Being Treated in British Columbia on December 31,2000 1 N % of total AGE ON DECEMBER 31, 2000 All patients 1,684 100.0 Mean (yrs) j 61.2 Std. Dev. (yrs) 16.3 Median (yrs) j 64 j 70 & older 621 36.9 TREATMENT DURATION Median (mos) j 25.2 RACE Caucasian 949 56.4 Other 316 18.8 Unknown 419 24.9 SEX Male 1,005 59.7 Female 679 40.3 PRIMARY DIAGNOSIS AT TREATMENT INITIATION Diabetes 373 22.1 Renal vascular disease 155 9.2 Glomerulonephritis 358 21.3 Cystic kidney 99 5.9 Congenital Diseases 57 3.4 Other 213 12.6 Unknown/Aetiology uncertain 429 25.5 TREATMENT ON DECEMBER 31, 2000 Haemodialysis 1,255 74.5 Peritoneal Dialysis 429 25.5 Source: Canadian Organ Replacement Register (CORR) Institute for Health Information (2002) Canadian 165 APPENDIX G. CHARACTERISTICS OF PREVALENT ESRD DIALYSIS PATIENTS (CANADA) Characteristics o f Prevalent E S R D Dialysis Patients on December 31,2000, Canada N <Vo of total AGE ON DECEMBER 31, 2000 All patients 14,408* 100.0 Mean (yrs) ' 61.5 Std. Dev. (yrs) 16.2 Median (yrs) 65 70 & older 5,449 37.8 TREATMENT DURATION Median (mos) 26.9 RACE Caucasian 9,620 66.8 Other 3,030 21.0 Unknown 1,758 12.2 SEX Male 8,379 58.2 Female 6,029 41.8 PRIMARY DIAGNOSIS AT TREATMENT INITIATION Diabetes 4,026 27.9 Renal vascular disease 2,652 18.4 Glomerulonephritis 2,654 18.4 Cystic kidney 726 5.0 Congenital Diseases 572 4.0 Other 1,984 13.8 Unknown/Aetiology uncertain 1,784 12.4 TREATMENT ON DECEMBER 31, 2000 Haemodialysis 11,208 77.8 Peritoneal Dialysis 3,200 22.2 *2000 data for Quebec and Alberta were incomplete at the time of this report. Actual numbers are higher than data presented. Source: Canadian Organ Replacement Register (CORR), Canadian Institute for Heath Information (2002) 166 APPENDIX H. NEW END-STAGE RENAL DISEASE PATIENTS (MALE) Number of New End-Stage Renal Disease Patients by Age Group, Males, Canada, 1997- 2001 (Age-Specific Rates per 100,000 Population) 100 JO 800 8 60O 4 400 4 200 4 OO 1997 1998 1999 2000 2001 • 0-19yrs - Male 1.4 1.0 12 1.3 12 • 20-44yrs - Male 72 7.0 69 6.8 5fi B 45-64yrs - Male 25.5 25.4 26.4 267 25.1 165+ yrs - Male 72.8 740 80.1 840 890 Source: Canadian Organ Replacement Register, Canadian Institute for Health Information (2004) 167 APPENDIX I. NEW END-STAGE RENAL DISEASE PATIENTS (FEMALE) Number of New End-Stage Renal Disease Patients by Age Group, Females, Canada, 1997- 2001 (Age-Specific Rates per 100,000 Population) 8 o o o o CL w •i) < 100.0 80.0 60.0 4 40.0 20.0 4 0.0 19Q7 1998 1999 2000 2001 • 0-19yrs - Female 0.8 1 2 1 JO 1 2 12 • 20-44yrs - Female 4.5 4 6 5 3 45 4 2 H 45-64yrs - Female 15.1 16.7 163 16.4 16 9 165+yrs - Female 35.1 41.1 44.1 45.5 50.9 Source: Canadian Organ Replacement Register, Canadian Institute for Health Information (2004) 

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