HOPE IN WOMEN WITH BREAST CANCER. by DORIS A. SCALES, R.N., B.S.N. A THESIS IN

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1 HOPE IN WOMEN WITH BREAST CANCER by ORIS A. SCALES, R.N., B.S.N. A THESIS IN NURSING Submitted to the Graduate Faculty of Texas Tech University Health Sciences Center in Partial Fulfillment of the Requirements for the egree of MASTER OF SCIENCE IN NURSING Approved Accepted ecember, 1993

2 I 7^- ACKNOWLEGMENTS I would like to express my appreciation to the School of Nursing staff at Texas Tech University Health Sciences Center. I am most grateful to r. Mary Umlauf, Billie Becknall, Melanie Fowler, oug Hubbard and r. Grant Taylor for their support, suggestions and guidance throughout this study. I would also like to thank the many dedicated friends that stood by me in support of my endeavors. Finally, I praise God and salute my wonderful family: my husband, Willie, and children, ana and Russell, for their understanding, patience and love. 11

3 TABLE OF CONTENTS ACKNOWLEGMENTS ABSTRACT LIST OF TABLES ii vi vii I. INTROUCTION 1 Purpose 1 Background 1 Prevalence of Breast Cancer 2 Treatment of Breast Cancer 4 Significance of the Study 5 Research Questions 7 Conceptual Framework 8 efinitions 10 Assumptions 12 Limitations 13 II. REVIEW OF LITERATURE 14 Hope In Breast Cancer Patients 14 Summary 21 III. METHOOLOGY 23 Research esign 23 Population 23 Sample 23 Setting 24 Protection of Human Rights 24 Procedure for ata Collection 24 iii

4 Instrument 26 Plan for ata Analysis 27 Research Question One 27 Research Question Two 27 Research Question Three 27 Research Question Four 28 IV. ANALYSIS OF ATA 2 9 Introduction 29 emographic ata 2 9 Research Question One 31 Research Question Two 31 Research Question Three 32 Research Question Four 32 Summary 3 7 V. CONCLUSION AN RECOMMENATIONS 4 0 Introduction 4 0 Hope in Women with Breast Cancer 40 Comparing Hope by Stage of Cancer 44 Importance of Conceptual Subcomponents 4 5 Nowotny Hope Scale (NHS) 4 7 Conclusions 4 9 Recommendations 51 REFERENCES 52 APPENICES A. IRB APPROVAL FORM 54 iv

5 B. LETTER TO PHYSICIAN 56 C. LETTER OF COOPERATION TO CONUCT RESEARCH STUY FROM PHYSICIAN 58. SCRIPT FOR INTERVIEWS 6 0 E. EMOGRAPHIC INTERVIEW INFORMATION 62 F. CONSENT FOR USE OF HOPE SCALE FROM R. NOWOTNY 64 G. NOWOTNY HOPE SCALE SAMPLE ITEMS 66 V

6 ABSTRACT The purpose of this descriptive study was to explore the phenomenon of hope among women with breast cancer. Comparisons were made according to stages of breast cancer, level of hope and across the hope subconcepts. Because hope is a vital force in adaptation to illness, the knowledge generated from this study could greatly enhance a woman's quality of life if the nurse's knowledge is increased about how to instill hope and facilitate effective coping responses throughout each intervention. The setting used for this study was a private oncology practice located in a metropolitan area in West Texas. ata were collected by a pencil-and-paper survey administered to a random sample of 90 women. The questionnaire was distributed to breast cancer patients during their routine office visit for an examination and/or chemotherapy treatment. emographic data were collected by interview prior to self-administration of the Nowotny Hope Scale Questionnaire. The Nowotny Hope Scale (NHS) was used to assess the level of hope. The NHS is a 29-item questionnaire with six identified subconcepts of hope as follows: confidence in the outcome; relationship with others; belief in the possibility of a future; spiritual beliefs; active involvement; and inner readiness. ata analysis was accomplished by using descriptive measures of frequency of distribution, mean scores, vi

7 agreement percentages and ranking. The findings indicate there were no differences in the level of hope among the two subsamples. According to the responses, both subsample groups agreed that the subconcept "spiritual beliefs" contributed most to hope in their lives. Overall results indicate that the subjects were "hopeful" about the outcome of their cancer experience. vii

8 LIST OF TABLES 4.1. Composite hope score of women with breast cancer Hope scores of women with breast cancer Confidence: t-test comparing stage of cancer Relationship with Others: t-test comparing stage of cancer Belief in Possibility of a Future: t-test comparing stage of cancer Spiritual Beliefs: t-test comparing stage of cancer Active Involvement: t-test comparing stage of cancer Hope Comes from Within: t-test comparing stage of cancer Importance of hope subconcepts by women with stage I and II breast cancer Importance of hope subconcepts by women with stage III and IV breast cancer 38 Vlll

9 CHAPTER I INTROUCTION Purpose The purpose of this study was to explore the phenomenon of hope in women with breast cancer, to determine if the stage of breast cancer affects the measure of hope. Background Hope is "not a single act, but a process of feeling (emotion), thought, and action that changes with time" (Brown, 1991, p. 97). Hope has been defined as an expectation, a virtue, an emotion, an illusion, a goal and a disposition. Hope is often equated with the caring and compassionate nature of nursing (Nowotny, 1991). In addition, "hope is hypothesized to play a therapeutic role in the coping process of patients with cancer. Optimism, a component of hope, is reported to be an important predictor of psychosocial adjustments in patients with cancer" (Owen, 1989, p. 75). Hope is essential if women with breast cancer are to cope successfully with situations they encounter throughout cancer treatment. Patients with cancer inevitably experience symptoms such as nausea and vomiting, hair loss, and generalized weakness due to chemotherapy and/or radiation therapy, and/or hormonal therapy resulting in a loss of perceived personal control. It is asserted that

10 women with high hopes are more likely to participate in their own care and continuing treatments (Herth, 1989). Furthermore, a feeling of hopefulness is itself a method of coping. Hope allows the individual the chance to avoid or minimize the stresses and despair associated with the diagnosis and treatment of cancer (Herth, 1989). Prevalence of Breast Cancer Breast cancer is the most common malignancy in women in the United States. deaths in females. In Texas, it accounts for 18% of cancer The prevalence of breast cancer is exceeded only by lung cancer. As a result, breast cancer is the most common cause of death in middle-aged women between the ages of and the most common cause of death from disease in younger females between the ages of 25 and 35 (Cancer Facts and Figures, 1992). There were an estimated 180,000 new cases of breast cancer among women in From this rate, it is extrapolated that approximately one of every nine women will develop breast cancer during her lifetime (Cancer Facts and Figures, 1992). Breast cancer is slowly increasing in incidence and prevalence. The incidence of breast cancer is highest among women living in the United States, northern Europe, and Canada. The incidence is much lower in developing countries, Mexico, and the Far East. The lower incidence in developing countries is thought to be due to dietary factors, especially a low total fat intake.

11 Unfortunately, breast cancer incidence rates have increased about 3% a year since 1980, rising from 84.8 per 100,000 in 1980 to in 1988 (Holleb, Fink and Murphy, 1991). Experts predict that in the 1990's, more than 1.5 million women will be newly diagnosed with this disease; nearly 30% of these women will ultimately die from breast cancer. The increase in the "incidence" rate is believed to be due largely to screening programs detecting tumors before they become clinically apparent. Other reasons have not been clearly defined. Although the incidence rate for breast cancer is increasing, early detection and improved treatments have kept mortality rates fairly stable during the past fifty years (ollinger, Rosenbaum, and Cable, 1991). The cause of breast cancer is unknown, but some factors implicated as causes are viruses, chemical carcinogens, irradiation and diet. Of course, the incidence also increases as women grow older. Cancer of one breast places the patient at greater risk for developing cancer of the other breast. A family history of breast cancer is an important risk factor, especially if the cancer occurred in the mother and the sister, is bilateral, and developed before menopause. Exposure to ionizing radiation is a risk factor, especially if the exposure occurs before the age of 35. Early menarche and late menopause are also associated with a higher incidence, as are nulliparity and first

12 pregnancy after the age of 30. Women who have had cancer of the colon, thyroid, endometrium, or ovary have a higher incidence of breast cancer (ollinger, Rosenbaum, and Cable, 1991). Treatment of Breast Cancer Breast cancer is most curable when detected in its earliest stages. For many years, breast cancer was treated by one standard curative surgical procedure, the Halsted radical mastectomy (the surgical removal of the breast with incontinuity resection of the axillary lymph nodes and chest wall muscles). At that time, women whose cancer was inoperable or who had residual or recurrent local disease were given radiotherapy. Those with metastatic disease were given chemotherapy and radiotherapy. However, over the past 2 0 years, the approach to evaluating and treating breast cancer has changed considerably. Currently, the form of treatment is dependent upon the patient's medical condition and also the patient's preference. Treatment may require a mastectomy (surgical removal of the breast), lumpectomy (local removal of the tumor), radiation therapy (treatment using high energy radiation from x-ray machines, cobalt, radium, or other sources), chemotherapy or hormone manipulation therapy (use of chemicals to destroy cancer cells). more methods are used in combination. Sometimes, two or As a cosmetic

13 therapy, breast reconstruction has become an important part of treatment and rehabilitation (Cancer Facts and Figures, 1992). Coping effectively with treatment and the emotional losses due to a cancer diagnosis may depend on the female's ability to maintain hope. Hope may assist her through adverse events, and its presence may precede positive coping (Owen, 1989). Today, many health care providers believe that women with cancer can have positive expectations for the future, even though that future may hold many uncertainties. "Although no one can predict the future when diagnosed with cancer, there is always room for hope" (Nowotny, 1991, p. 123). Significance of the Study A primary role of the oncology nurse is to facilitate a positive coping process in patients under their care. Nurses should encourage women with cancer to take advantage of the many resources available such as Breast Support Groups and ialogue, both of which are support programs of the American Cancer Society. These groups are an informal discussion group for cancer patients, families and friends. These support groups provide an opportunity to share common experiences, concerns, problems and possible solutions, as well as a chance to talk confidentially with others who are coping with cancer.

14 In addition, oncology nurses need to be able to perform specific assessments and provide advanced interventions that will improve the quality of life of the increasing number of women with cancer. "Hope has been identified as an important component in the quality of life in women with cancer" (Nowotny, 1989, p. 57). Some experts assert that individuals will fight their cancer with hope, including not only hope for a cure or hope for a longer life, but also hope for quality time with significant others, hope of being free of pain and hope to attain short term goals. The oncology nurse has a responsibility to prepare these women for the uncertainties and potential consequences of their cancer, especially treatment side effects. The oncology nurse's plan of care is based on the assumption that these women with cancer have a right to be informed and make treatment choices. In turn, cancer nursing requires nurses who are capable of establishing and maintaining a therapeutic relationship with patients in order to help them manage their day-to-day activities. Nurses in cancer care also are responsible for providing opportunities for these women to explore feelings about what is happening to them and for creating an environment that allows them to ventilate their feelings. Negative ways of coping need to be identified and the nursing care plan should be designed in order to increase positive coping strategies (Marino, 1981).

15 Nurses can reinforce the female patients' sense of hope by communicating confidence in the effectiveness of therapy; by helping patients identify values they hold dear; by setting realistic goals that will promote a sense of accomplishment and thereby generate hope when the goals are attained. (Hickey, 1986, p. 133) The oncology nurse may also inspire hope by being enthusiastic during interactions with the patient, and by helping patients incorporate both spiritual values and humor in their lives. When women with cancer can no longer realistically hope for a long life, or for a cure from cancer, hope can then be refocused toward shorter, more tangible goals, such as a week or month with little or no pain or ultimately the hope for a comfortable, peaceful death. (Hickey, 1986, p. 137) Research Questions The questions posed in this study were: 1. What is the composite hope score of women with breast cancer? 2. Is there a difference in the level of hope between women with stage I and stage II breast cancer as compared to women with stage III and IV breast cancer? 3. Is there a difference across the conceptual subcomponents of women with stage I and stage II breast cancer compared to women with stage III and IV breast cancer? 4. Is there a difference in importance of the conceptual subcomponents of hope between women with 7

16 stage I and II breast cancer and women with stage III and IV breast cancer? Conceptual Framework orothea Orem's Self-Care Nursing Theory was used as the conceptual framework for this study. Orem's Self-Care Nursing Theory was introduced in 1985, and has been used to describe health promotion and maintenance, an important aspect of life for women with breast cancer. The ability to maintain or improve health may be achieved through patient education or the direct interaction of the nurse to encourage self-care and independence. Orem defines self-care as what one must do to maintain life and health. Universal self-care requisites include air, water, nourishment, elimination, activity, rest, social interaction, solitude, prevention of hazards, and promotion of human functioning. orothea Orem believed that (1) selfcare is a learned behavior that regulates functioning and development; (2) persons unable to engage in self-care need nursing assistance; and (3) nursing actions help the person meet his self-care goals. Concepts important to understanding the self-care model are as follows: 1. Self-care is an activity that people initiate on their own behalf to meet their needs in day-to-day living. 8

17 2. Self-care agency is voluntary or deliberate action that a person engages in to meet needs. 3. Therapeutic self-care demands are those needs that are universal to everyone in maintaining wellness. 4. Self-care deficit is a condition of not being able to meet self-care needs or therapeutic demands. 5. Nursing agency are actions that the nurse takes to assess and assist the patient in meeting her selfcare demands by imparting knowledge to the patient so that she may make conscientious choices about her welfare. The following are examples of nurse agency: a. wholly compensatory nursing actions are defined as a period of time when the patient has no active role in care, b. partially-compensatory nursing actions allow the patient and nurse to form a partnership in meeting the patient's needs, c. supportive-educative nursing actions allow the nurse to assume the educator role with the patient (Orem, 1991). orothea Orem viewed man as a biological structure with certain physiological requirements. These influencing factors were culture, family, and community (Orem, 1991). Basic assumptions that Orem made include: (1) humans require continuous input and output; (2) humans have the

18 right to exercise self-care; (3) man experiences self-care deficits; (4) man is capable of recognizing self-care needs in himself and others; and (5) family units share responsibility for providing care and requesting help when needed (Orem, 1991). Women with breast cancer may experience self-care deficits when first diagnosed with cancer because of the fear and uncertainty that accompany a cancer diagnosis. In order for the patient to meet self-care demands, nurses are encouraged to help patients to cope with changing treatments, such as chemotherapy, radiation therapy, or surgery and provide patients reassurance and encouragement. Hickey (1986) encourages nurses to foster hope by helping patients develop short-term, realistic, attainable goals. According to Holland (1977), "women with cancer may be able to meet their self-care goals when oncology nurses express an attitude and philosophy that cancer is treatable, help the patient act rationally and feel less anxious" (p. 14). Hope is provided by offering a rational course of action that reduces shock, fear and anxiety. efinitions Active Involvement. May be as simple as setting a goal, caring, planning or mobilizing the energy to initiate a plan. Belief in the Possibility of a Future. An individual that has an expectation that has not yet been met. 10

19 Breast Cancer. A diagnosis of stage I, II, III or IV cancer of the breast. Composite Hope Score. An expectation, an emotion or belief in a positive fulfillment for the future as measured by the total of all items from the Nowotny Hope Scale. Confidence in the Outcome. An individual is confident that her hope will be fulfilled and it will have meaning. Hope Comes from Within. Related to trust and the courage to persevere. Relationship with Others. This component of hope includes thoughts, feelings and actions that involve family, friends and significant others. Spiritual Beliefs. Hope that exists that is founded in faith. Stage I Breast Cancer. A tumor of the mammary tissue, 2 cm or less in greatest dimension; axillary nodes negative; no evidence of distant metastasis as determined by a physician and recorded in the patient's medical record. Stage II Breast Cancer. A tumor of the mammary tissue, 5 cm or less in greatest dimension; axillary nodes may be positive but are not fixed to one another, no evidence of distant metastasis as determined by a physician and recorded in the patient's medical record. Stage III Breast Cancer. A tumor of the mammary tissue, may be greater than 5 cm, axillary nodes may be positive and fixed, supraclavicular or infraclavicular nodes 11

20 may be positive and there is no evidence of distant metastasis as determined by a physician and recorded in the patient's medical record. Stage IV Breast Cancer. Any combination of tumor and node involvement with evidence of distant metastasis as determined by a physician and recorded in the patient's medical record. Assumptions The following assumptions were made in this research study: 1. Most participants have received or are presently receiving chemotherapy and/or surgery, and/or radiation, and/or hormonal therapy as treatment for their cancer. 2. Each participant demonstrated an understanding of the questions asked. 3. The participant responded to items in the questionnaire with answers which were reflective of their hope level. 4. The clinical environment (the physician's office, the attitudes of the staff and other caregivers) has an effect on the affect of patients and family members. The nursing staff can facilitate or deflate hope among patients. 5. Severity of the disease (example: stage) may have an effect on level of hope. 12

21 Limitations The following limitations were acknowledged in this study: 1. Only women with breast cancer were included in this study, patients with multiple diseases were excluded. 2. The participants' history or life experiences other than cancer diagnoses may affect their level of hope. This effect may be adverse or positive in nature. 3. Only women visiting their oncologist's private office for an outpatient routine office visit and/or chemotherapy, and/or hormonal therapy treatment were surveyed. The selection was nonrandom. 4. Included a wide age range of subjects. 5. The participants' month and year of diagnosis ranged from January 1974 to June

22 CHAPTER II REVIEW OF LITERATURE This chapter presents a review of literature concerning breast cancer in women and its effect on their hope. The literature review shows that a diagnosis of breast cancer may cause many fears associated with hopelessness, vulnerability, death and fear of the unknown. In spite of the advances in cancer treatments in the last few years, cancer continues to be a life-threatening and life-changing illness. It can spread into a woman's social and emotional domains, drastically disrupting her family and challenging the very values that make her life worth living (Holleb et al., 1991). As a group, women face particular threats from cancer. Cancer of the breast is the most common major cancer in women in the United States. Breast cancer is probably the most feared cancer in women because of its devastating frequency and its psychological impact. It affects the perception of sexuality and self-image to a degree far greater than any other cancer (Holleb et al., 1991). Hope In Breast Cancer Patients Shaw (1989) conducted a study which was designed to "explore the experiences of women during initial treatment for breast cancer and to explore the meaning of those experiences" (p. 1327). In-depth interviews with 25 women 14

23 were conducted within 24 hours prior to initial surgical treatment for breast cancer and then again on the second post-operative day. The tape-recorded interviews were written verbatim and categories arising from the data were developed. Cancer-related events, coping strategies, and influence of other persons were major factors that were found to contribute to the woman's experiences. Cancerrelated events were events connected to diagnosis and treatment of breast cancer which occurred on a time continuum. These events included discovery of the abnormality, seeking medical assistance, diagnosis, treatment decision, surgery and post-operative recovery. The initial events often caused fear and distress. However, the passage of time allowed the employment of coping strategies and utilization of social support systems. Through the use of seven commonly used coping strategies, the women in Shaw's study were able to alter the meanings of the events and thus reduce fear and distress and maintain hope and control over their lives. The strategies involved the redefining of the event, taking a positive stand, maintenance of a positive attitude, reliance on God, normalizing behavior, humor and maintaining control of information. The investigator further identified the support of family and friends, especially the husband, as a critical importance in the maintenance of hope and control. 15

24 Supportive actions included: physical presence; listening; assumption of household tasks; and tangible tokens of caring. Others, who had had breast cancer, served as a source of hope and support. Caring and sensitive professionals were also valued. The physician-woman relationship was the most defined of the relationships with health care professionals. This relationship, even when not emotionally supportive to the woman, was sustained due to trust in the physician's competence or financial factors. The findings of this study support the importance of having health care professionals that are caring, sensitive and aware of the necessity of education and support for women with cancer. Shaw (1990) conducted a second study indicating that the diagnosis and initial treatment of breast cancer has been identified as one of the most distressing experiences for women with the disease. The questions presented in this study focused on this experience and its meaning to the women. The investigator conducted an in-depth, unstructured interview with 25 consecutively admitted women within 12 hours prior to surgical treatment for breast cancer and then again on the second post-operative day. The tape-recorded interviews were content analyzed. The description of the experience that emerged was one in which meanings of the events were ever shifting and changing to accommodate the woman's need to maintain hope. Strategies used to support 16

25 this continuing phenomenon of hope were identified. In particular, these women controlled the type and amount of information that they would accept. They rejected information that threatened their hope. Nurses who attempted to provide "negative" information were perceived as unhelpful. The women in Shaw's second study also controlled their social support by determining who they would inform of the diagnosis. Persons whom the subjects believed would react with fear and thus threaten her definition of the event, were not informed of the woman's upcoming surgery. The women also normalized their behavior as much as possible. The continuance of everyday activities reinforced hope. Humor and reliance on God also provided means by which women defined their experiences in a hopeful manner. The passage of time was another factor involved in the attribution of meaning to the events. The investigator states that within the first week after diagnosis, existential concerns were prominent. After two weeks, these were being replaced by rehabilitation concerns. The findings provide insight into how nurses and other health care providers can support women with newly diagnosed breast cancer by allowing them to have control over information received and shared with significant others and thereby maintain hope. (Shaw, 1990, p. 145) Fallowfield (1990) conducted a study regarding the psychosocial and sexual disturbances that are common to a diagnosis of breast cancer and its treatment. This study tested the theory that the development of breast-conserving 17

26 techniques would prevent the psychological distress experienced following mastectomy. However, these investigators found that studies comparing psychosocial outcome of mastectomy with lumpectomy and radiotherapy reveal some advantage to women treated with breast-conserving procedures in terms of body image but very little differences in psychiatric morbidity. Whatever the primary therapy, women still have to confront the fact that they have had cancer, a life threatening disease which may recur. (1990, p. 51) The recommendations from this study are that regardless of the treatment offered, health care providers should improve their understanding of the pre-morbid personality characteristics and sociodemographic factors that may predispose certain women to failure of adjustment following a diagnosis of breast cancer. Brandt (1987) conducted a descriptive correlational study among women with breast cancer to determine the relationship between the level of hopelessness. The following variables: locus of control, perceived support available from family and friends. These variables were theorized by the investigator as possibly influencing whether patients with cancer maintain hope or submit to hopelessness. A sample of 31 women with breast cancer and receiving their first chemotherapy course completed the Beck Hopelessness Scale, the Rotter Internal-External Scale, and a demographic information questionnaire. The analysis 18

27 revealed that participants experienced relatively low levels of hopelessness. The investigator's final conclusions were "recommendations that this information be communicated to nurses, patient's families, and the public to alter negative perceptions of the psychological status of patients with cancer" (p. 35). In another study, Herth (1989) conducted a descriptive study investigating the relationship between hope and coping in 120 adult patients undergoing chemotherapy in hospital, out-patient and home settings. Also considered were length of time since diagnosis, family and job responsibilities and religious convictions in relation to the level of hope and coping. Herth found a significant relationship between the level of hope and level of coping among subjects in all three settings. He concluded "that patients with high hopes are more apt to participate actively in their own care and that continuing treatment is in itself a method of coping" (p. 67). Additionally, this study identified intrapersonal, environmental and illness-related variables as a contributing factor that may influence hope and coping responses. "Nurses' knowledge of numerous variables increases the possibility of developing patient centered strategies for facilitating adequate hope" (Herth, 1989, p. 71). Brockopp, Hayko and Winscott (1988) examined the relationship between levels of perceived personal control 19

28 and the needs for hope and information among 56 adult men and women cancer patients. The investigators found "significant relationships between the perceived level of control and hope that pleasurable experiences remained, as well as wanting to share what has been learned during the illness with others" (p. 116). Raleigh (1980) sought to identify variables which aid physically ill individuals in maintaining hope. The research defines hope as an "expectation of goal attainment which is manifested by an orientation toward the future" (p. 1313). Raleigh identifies several variables that may be related. These variables include locus of control, support from family and friends, religious, or philosophical beliefs and an attribution of a meaning or purpose for the illness. Prior to the expectation of goal attainment is a sense of sufficient control over the environment to attain the goal. Raleigh (1980) states that the "individual who is without hope is in a critical condition since hope is a necessary, although not sufficient, condition for action and for sustaining life" (p. 1313). Two groups of physically ill persons were studied: (1) those with some form of cancer, and (2) those with a non-life threatening chronic illness. The 90 participants (45 in each group) were selected from a large metropolitan visiting nurse association. For this study, the participants completed the future orientation and achievement questions on the Time 20

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