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SOCIAL SUPPORT AND QUALITY OF LIFE IN WOMEN WITH CONGESTIVE HEART FAILURE DISSERTATION Presented in Partial Fulfillment of the Requirements for the Degree Doctor of Philosophy in the Graduate School of
SOCIAL SUPPORT AND QUALITY OF LIFE IN WOMEN WITH CONGESTIVE HEART FAILURE DISSERTATION Presented in Partial Fulfillment of the Requirements for the Degree Doctor of Philosophy in the Graduate School of The Ohio State University By Kristin K. Kuntz, M.A. ***** The Ohio State University 2006 Dissertation Committee: Professor Charles Emery, Adviser Professor Barbara Andersen Professor Steven Beck Approved by: Adviser Graduate Program in Psychology ABSTRACT Congestive Heart Failure (CHF) is a debilitating condition resulting from a structural or functional cardiac disorder that impedes the heart from filling with or ejecting a sufficient amount of blood to meet the needs of the body. Common symptoms of CHF include fatigue, decreased exercise tolerance, and edema; these symptoms often lead to limitations in daily functioning. Research has demonstrated a relationship between low perceived social support and poor physical and emotional outcomes in women with CHF. The purpose of this study was to evaluate a social support intervention among women with heart failure. It was hypothesized that women with CHF who participated in a support group would report enhanced quality of life (QOL) compared to usual care patients. Secondary hypotheses were that support group participants would report an increase in the size of their social support network and a reduction in symptoms of distress. Thirty-eight women were recruited for this study and completed the baseline assessment. All of them had been diagnosed with CHF (classified as Stage C or D). After participants completed baseline demographic and psychosocial data, 34 were then randomized into the support group condition (N=15) or the usual care condition (N=19) (four subjects were never randomized due to study termination). The support group met once each week for eight consecutive weeks at The Ohio State University s Center for ii Wellness and Prevention. During each of the sessions, patients discussed topics related to living with CHF, including coping with physical symptoms of heart failure, barriers to following a treatment regimen, identifying sources of social support, and stress management. At the end of eight weeks, participants completed the psychosocial questionnaires again. The study was designed with an eight-week follow-up. Thus, 16 weeks after baseline assessment, participants completed all psychosocial questionnaires a third time. Usual care subjects did not receive any intervention during the 16-week study but were given a referral to a local support group at the conclusion of the study. A series of repeated measures ANOVAs revealed no significant time by condition interactions in heart failure-related QOL or general health-related QOL. In addition, there were no significant time by condition interactions in perceived social support or number of people in support networks across time periods. Given the small number of participants in the current study, it is difficult to draw conclusions about whether this intervention could be beneficial to larger numbers of CHF patients. This was the first study of its kind to quantitatively examine potential changes in social support and QOL after participation in a discussion-based support group. Future research will need to recruit larger samples and explore alternative support group formats. Despite the null findings in this study, much research has shown that CHF affects not only physical functioning but emotional and social functioning as well. Thus, it is critical to identify interventions that address not only the biological aspects of patient functioning but also the psychological and social aspects of functioning as well. iii Dedicated to my family iv ACKNOWLEDGMENTS First, I would like to thank my immediate family: my brother, grandmother, and especially my mother, whose support has never wavered. She constantly encouraged me and kept me motivated during this project. I would also like to thank my father, who is always present in spirit and who I know is celebrating my success with me. My lab mate, Jamie Jackson, deserves a big thank you for her hard work and dedication to this project. When I was not able to be on-site working on the project, she did a wonderful job coordinating this research. Her hard work is much appreciated. An additional thank you goes to our undergraduate research assistant, Rachel Wendell who spent numerous hours entering data and working on the data base. Also, thank you to the Alumni Association for awarding me the Alumni Grant for Graduate Research and Scholarship. This money helped to compensate participants and cover routine expenses that were accrued throughout the project. Thank you to my friends from graduate school who supported me through this project: Diane Bonfiglio, Ted Robles, Colleen Lukens, Laura Simonelli, Lisa Christian, Danette Salas, and Meghan Warner, among others. At times they offered their sage advice related to this project, but more importantly, they were my social support that helped me through both the good and the challenging times. A special note of v appreciation goes to my friends from internship, Heather Lehmkuhl, Lisa Hahn, Tien Do, Jera Stewart, and Leigh anne Faul who provided not only statistical insight but also much needed social relief through the final stages of the writing process. I also wish to thank the members of my dissertation committee, Dr. Charles Emery, Dr. Barbara Andersen and Dr. Steven Beck. Their time and feedback was critical to the success of this project. Thank you to Barbara Ludwig for being the graduate school representative for my defense meeting. I would also like to acknowledge Dr. Catherine Stoney for her guidance through my first years of graduate work. Finally, I would like to express additional gratitude to my adviser, Dr. Charles Emery, for his guidance throughout this project. Because of his willingness to accept me into his laboratory my fifth year, I was able to complete this research and attain my goal of earning a Ph.D. in clinical health psychology. vi VITA September 2, Born- Hershey, Pennsylvania M.A. Clinical Psychology, The Ohio State University Graduate research assistant, The Ohio State University Graduate Teaching Associate, The Ohio State University Clinic Coordinator Cardiopulmonary Behavioral Medicine Clinic The Ohio State University Graduate Teaching Associate, The Ohio State University Research Publications PUBLICATIONS 1. Stoney, C. M., & Kuntz, K. K. (2004). Cholesterol. In A. Christensen, R. Martin, & J. M. Smyth (Eds.) Encyclopedia of Health Psychology. Kluwer Academic/Plenum: New York. 2. Stoney, C. M., Hughes, J. W., Kuntz, K. K., West, S. G., & Thornton, L. M. (2002). Cardiovascular stress responses among Asian Indian and European American men and women. Annals of Behavioral Medicine, 24, FIELDS OF STUDY Major Field: Specialization: Psychology Clinical Psychology Health Psychology vii TABLE OF CONTENTS Page Abstract ii Dedication...iv Acknowledgments...v Vita vii List of Tables..ix List of Figures..x Chapters 1. Introduction Method Results Discussion..40 List of References..48 Appendix A: Appendix B: Appendix C: Tables 55 Figures...61 Support Group Manual for Participants 67 Appendix D: Types of Social Support Handout.. 72 Appendix E: Post-study Summary Booklet 74 Appendix F: Questionnaires viii LIST OF TABLES Table Page 1 Age range, means (standard deviations) and percentages of descriptive characteristics by group Baseline means (standard deviations) from psychosocial questionnaires.57 3 Means (standard deviations) across time from psychosocial questionnaires...58 ix LIST OF FIGURES Figure Page 1 Flowchart of Study Participation Correlation between LVEF and Physical Functioning on the Rand 36-Item HealtQuestionnaire 63 3 Correlation between LVEF and Social Functioning on the Rand 36-Item Health Questionnaire Correlation between LVEF and Pain on the Rand 36-Item Health Questionnaire.65 5 Correlation between LVEF and General Health on the Rand 36-Item Health Questionnaire. 66 x CHAPTER 1 INTRODUCTION Congestive Heart Failure Congestive Heart Failure (CHF) is a debilitating condition resulting from a structural or functional cardiac disorder that prevents the heart from filling with or ejecting a sufficient amount of blood to meet the needs of the body (Jessup, 2003). CHF often occurs during the terminal phase of cardiac diseases and is a leading cause of morbidity and mortality in industrialized nations (Cafagna, Ponte, & Burri, 1997; MacMahon & Lip, 2002; Pini, 2003). During CHF, the pumping of blood out of the heart slows and blood returning from the body to the heart becomes backed up, resulting in fluid congestion in the tissues (American Heart Association, 2004). Heart failure may be caused by coronary artery disease (CAD), a condition in which arteries that supply blood to the heart muscle are narrowed. It may be caused by scar tissue formed after a myocardial infarction (heart attack) that interferes with the heart s ability to work effectively. Other causes of CHF include hypertension (high blood pressure), cardiomyopathy (primary disease of the heart muscle), and congenital heart defects (American Heart Association, 2004). In the United States, the most common cause of heart failure is CAD, though the mechanisms that cause increases in symptoms and 1 deterioration of cardiac function occur irrespective of the underlying cause of the disease (Jessup, 2003). Congestive heart failure is often diagnosed based on patient presentation of swelling in the legs and ankles, difficulty breathing, and weight gain from fluid accumulation (American Heart Association, 2004). Physicians use several diagnostic tests for determining the presence of heart failure including chest x-rays, echocardiograms, and electrocardiograms. Chest x-rays are used to identify enlargement of the heart or fluid accumulation in the lungs. Echocardiograms use sound waves to measure the movement of the heart during contraction and relaxation and are used to calculate Left Ventricular Ejection Fraction (LVEF). LVEF is the percentage of blood pumped from the left ventricle with each contraction. A healthy heart ejects approximately 50% to 70% of the blood in the pumping chambers with each contraction (Flavell & Warner-Stevenson, 2001). Patients with congestive heart failure often have an ejection fraction of less than 40%. Electrocardiograms record electrical activity of the heart and are used to measure changes in heart rhythm and wall thickness (Flavell & Warner-Stevenson, 2001). Heart failure greatly decreases the efficiency of heart functioning (American Heart Association, 2004). Heart failure patients cannot exert themselves because their tissues are not receiving the oxygen needed for proper functioning. Common symptoms include fatigue, a decreased exercise tolerance, and edema (swelling). Edema is a result of excess fluid in the tissues and often occurs in the legs and ankles but may occur in other parts of the body (American Heart Association, 2004; Jessup, 2003). When fluid accumulates in the lungs, dyspnea (shortness of breath) often results, especially when 2 lying down, making sleep difficult. Edema increases if heart failure has affected the ability of the kidneys to clear sodium and water, increasing fluid retention (American Heart Association, 2004). Cognitive difficulties also occur as a result of heart failure. Cognitive symptoms include memory loss and poor concentration (Bennett, Baker, & Huster, 1998). Symptoms of heart failure greatly impair activities of daily living. In a sample of approximately 700 women with heart failure, fewer than half reported that they were healthy enough to perform everyday activities (Riedinger, Dracup, & Brecht, 2002). Often, patients with heart failure are diagnosed with three or more additional medical conditions, and they take an average of six medications daily (DiSalvo & Warner- Stevenson, 2003). The number of symptoms, combined with emotional and economic strains, frequent hospitalizations, and poor prognosis of CHF lead patients frequently to report experiencing a poor quality of life (Cafagna, Ponte, & Burri, 1997; Emery, Frid, Engebretson, Alonzo, Fish, Ferketich, Reynolds, Dujardin, Homan, & Stern, 2004; Carels, 2004). Treatment for CHF is aimed at managing symptoms rather than curing the disease (Flavell & Warner-Stevenson, 2001). Managing CHF requires a regimen of rest, proper diet, modified daily activity, and oral medication (American Heart Association, 2004; Flavell & Warner-Stevenson, 2001). Medications used to treat CHF include ACE (angiotensin-converting enzyme) inhibitors and vasodilators which expand the blood vessels and aid blood flow, beta blockers which block receptor sites for hormones that make the heart beat faster, and Digoxin which may slow the heart beat and restore normal rhythm (Keane, 2003). Diuretics are often prescribed to help the body eliminate 3 excess fluid, and potassium and magnesium supplements may be used to replace the loss of those minerals when taking diuretics (Flavell & Warner-Stevenson, 2001). The costs associated with treating heart failure increase as the proportion of older adults in the population increases. Treatments for common comorbid conditions of heart failure such as coronary artery disease and hypertension have improved in recent decades, thereby extending patients lives and leading to a greater proportion of adults who are living with heart failure (Richardson, 2003). Despite advances in treatment, patients with CHF continue to have a poor prognosis, as half of them die within five years of diagnosis (National Heart, Lung, and Blood Institute, 2002). In the United States, approximately five million people are living with CHF. Every year, about 550,000 new cases are diagnosed, and the annual number of cases of CHF has been increasing over the last three decades (American Heart Association, 2005). From 1980 to 1993, the number of physician visits for heart failure increased 71% from 1.7 million to 2.9 million per year (Pini, 2003). The growing prevalence of heart failure places a large burden on the health care system, as it is the most common diagnosis in hospitalized patients over the age of 65 (Cafagna, Ponte, & Burri, 1997; Krumholz, Butler, Miller, Vaccarino, Williams, Mendes de Leon, Seeman, Kasl, & Berkman, 1998). In 2005, the total cost of hospital care, physician office visits, home care, nursing home care and medication for CHF patients was approximately $27.9 billion, up from $17.8 in 1993 (American Heart Association, 2005; National Heart, Lung, and Blood Institute, 2002). 4 Congestive Heart Failure and Quality of Life Quality of life is frequently measured in medical populations and generally encompasses various factors including quality of relationships, emotional distress, coping behaviors, as well as physical functioning (Carels, 2004; Reidinger, Dracup, & Brecht, 2002). Health-related quality of life can be thought of as encompassing three broad components: physical symptoms, perceptions, and functional ability (Bennett, Baker, & Huster, 1998). The physical symptoms component includes symptoms related to disease and their effect on an individual s ability to function physically. The component of perceptions includes one s own judgment about his or her condition and has been closely related to mortality and negative psychological and physiological outcomes (Bennett, Baker, & Huster, 1998). The functional ability component includes an individual s ability to cope and have a satisfying interpersonal life (Bennett, Baker, & Huster, 1998). Recent research has shown that patients with heart failure and other cardiac diseases report poor quality of life for a number of reasons (Bennett, Baker, & Huster, 1998; Reidinger, Dracup, & Brecht, 2002). Symptoms of heart failure often fluctuate from day-to-day, resulting in variability in patient reports of physical quality of life. Daily variability in limitations of physical ability often contributes to emotional distress and impaired health-related quality of life in heart failure patients (Carels, 2004). Reidinger, Dracup, & Brecht (2002) found that over half of the female heart failure patients in their sample reported feeling limited in their daily activities because of physical symptoms. In a sample of heart failure patients, coping with physical symptoms was listed as the most stressful aspect of heart failure (Grady, Jalowiec, Grusk, 5 White-Williams, & Robinson, 1992). Carel (2004) found no association between selfreported quality of life and cardiac function, indicating that reduced cardiac performance alone may not necessarily lead to poor quality of life. Cognitive and physical limitations often restrict pleasurable leisure and social activities. Many heart failure patients are forced to cease engaging in activities they once enjoyed and may not be able to maintain social connections because of the consequences of their condition (Bennett, Baker, & Huster, 1998). Heart failure may limit the ability to work, disrupting work roles and interactions with co-workers (Moser & Worster, 2000). For women especially, fulfilling the home and family role of caretaker may become more difficult due to medical limitations, and this often leads to guilt, stress, and feeling overwhelmed. It is not uncommon for elderly CHF patients to have a chronically ill spouse which can further add to feeling overburdened (Richardson, 2003). Without proper support, the heart failure patient may feel overburdened. Congestive Heart Failure and Social Support Social support can be defined as the number of social relationships an individual has (structural support) and the quality of the resources that these relationships provide (functional support) (Helgeson, 2002; Wills, 1998). Structural support refers to the existence of social relationships in one s life, often reflecting the number of people or the amount of contact one has with his or her social environment (Helgeson, 2002). Functional support refers to the resources that are provided by the support network (Helgeson, 2002). Many types of functional support have been described including tangible, esteem, informational, emotional, and network/belonging support (Sarafino, 6 1994). Tangible support refers to providing material resources or direct aid to one in need, such as driving a patient to a doctor s appointment. Esteem support is providing unconditional positive regard that builds feelings of self-worth and competence (Sarafino, 1994). Informational support includes providing information about stressful events such as medical procedures or physical symptoms. Emotional support is providing reassurance that an individual is cared for and valued (Taylor, 1999), and network/belonging support is the feeling of membership in a group of people with similar interests and social activities (Sarafino, 1994). The type of support individuals need and seek depends on the nature of the stressors they are experiencing. Positive effects of social support on health and well-being have been consistently demonstrated in the literature since the late 1970s. Access to a large, supportive social network appears to be related to better physical health and quality of life (Helgeson, 2002; MacMahon & Lip, 2002). Higher levels of structural support are related to fewer depressive symptoms, a lower risk of mortality, and a greater likelihood of recovery from clinical illness than those with lower levels of structural support (Sarafino, 1994; Wills, 1998). Researchers have theorized that social support may benefit health via a main effect or via a stress-buffering effect. The main effects hypothesis states that greater social support is associated with enhanced quality of life, regardless of level of stress (Helgeson, 2002). The stress-buffering hypothesis states that the more functional support people have, the better they are protected from the negative consequen
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