H 1:;g222:.3.22:5;5:; mm PLACE IN RETURN Box to remove this checkout from your record. To AVOID FINES return on or before date due. MAY BE RECALLED with earlier due date if requested. DATE DUE DATE DUE DATE DUE 6/01 c:/CIRC/DateDue.p65—p. 1 5 LIBRARY Michigan State University Aeeeeement of the Caregiver .AIBIOEIIIT 0! TI! CAIIGIVII TO IIIT Tl] Bibi-CAI! DINA-DU 0' TI! BIIAST CANCIR BNTIINT POST SURGICAL IITIIVIITION 33! Tara Lynn Conti Scholarly Project Submitted to: Michigan State Univereity in partial fulfillment of the requiremente for the degree of: MASTIR or BCI88CI IN NURSING College of Hurling 1995 Running Head: ABSBSBHBNT OF THE CARBGIVER TO “INT THE BILI-CARI DEMANDS OF THE BREAST CANCER PATIENT POST SURGICAL INTERVENTION 1 Assessment of the Caregiver Copyright by: Tara Lynn Conti 1995 2 Assessment of the Caregiver ACKNOWLEDGMENT I would like to thank Barbara Given for her unending support, direction, and especially the encouragement to complete my goal. Barb, your rapid response and clear suggestions made this possible. To Patricia Peek for three years of education, friendship, and guidance. You provided the groundwork but more importantly role model. My admiration and respect for you grew as I worked beside you during clinicals. Your caring and love for your profession was evident. Thank you! To Manifred Stommel, the man who makes you think, analyze and research. Thank you for impressing upon me the need to look beyond the obvious. Barbara Given, R.N., Ph.D., P.B.B.N. Patricia Peek, R.N., M.8. Manifred Stommel, Ph.D. 3 Assessment of the Caregiver To Don, who, through his constant love, encouragement and strong faith, enabled me to successfully reach my goal. 4 Assessment of the Caregiver TABLE OP CONTENTS List of Figures . . . . . . . . . . . . . . . INTRODUCTION AND BACKGROUND . . . . . . . . . PROBLEM STATEMENT . . . . . . . . . . . . . . CONCEPTUAL DEFINITIONS . . . . . . . . . . . THEORETICAL FRAMEWORK . . . . . . . . . . . . LITERATURE REVIEW . . . . . . . . . . . . . . SUMMAR! . . . . . . . . . . . . . . . . . . . PROJECT DEVELOPMENT . . . . . . . . . . . . . ASSESSMENT FORM GUIDELINES . . . . . . . . . EVALUATION . . . . . . . . . . . . . . . . . IMPLICATIONS FOR ADVANCED NURSE PRACTITIONER IMPLICATIONS FOR FUTURE RESEARCH . . . . . . REFERENCES 0 O O O O O O O O C O O O O O O O 10 11 16 22 33 34 36 38 44 47 49 5 Assessment of the Caregiver 6 LIST OF FIGURES Figure l Orem, A Conceptual Framework for 861 f-Clre Agency e e e e e s e e e e s s e s e 1 8 2 A Conceptual Framework for Self-Care Agency of the Caregiver for the Breast Cancer Patient . . . . . . . . . . . . 20 Assessment of the Caregiver 7 INTRODUCTION‘AND BACKGROUND Over the last decade, patients and their families have directed increasing national attention to breast cancer. Their input has stimulated breast cancer research, focusing on the need for prevention and cure. National Cancer Institute funding for breast cancer has increased from $92.7 million in 1991 to $196.6 million in 1993. In addition, Congress appropriated $210 million to the Department of Defense in fiscal year 1993 for a multi-year breast cancer research program (NIB, 1993). Breast cancer is a large and growing public health problem in the United States. During the decade of the 1990's, it is estimated that nearly 2,000,000 women will have been diagnosed with the disease and that 460,000 women will have died of it. Between 1950 and 1989, the incidence of breast cancer increased 53 percent (NIH, 1993). For 1995, it is estimated that 182,000 new cases of breast cancer in women will be diagnosed in the United States (Wingo, Tong, and Bolden, 1995). In the United States, breast cancer is the most common malignant neoplasm in women, accounting for 32 percent of malignancies in females. Breast cancer is the second leading cause of cancer-related death in women in the United States. A woman's lifetime risk of developing breast cancer is estimated at one in eight, more than one—half of the risk occurs after age 60, and one-third of the risk occurs after age 75 (Henderson, 1990). For 1995, it is estimated that 46,240 deaths will occur as a result of breast cancer. Expanded use of screening mammography Assessment of the Caregiver 8 explains part of the recent rise in the detection of breast cancer. The cause for the increase in breast cancer being seen is largely not known. The magnitude of this problem and its constant increase over time understandably result in considerable anxiety among all women. Special points about breast cancer should be recognized. The incidence of breast cancer rises continuously as women age. For women between the ages of 60 and 64, the rate of disease is 348 per 100,000 women; and between the ages of 70 and 74, it is 450 per 100,000 (NIH, 1994). Michigan statistics indicate 619 women afflicted per 100,000 between the ages of 7S and 79, corroborating national statistics (Given and Given, 1993). The President's Cancer Panel Special Commission on Breast Cancer (N18, 1990) has made a number of recommendations to advance our ability to prevent and treat breast cancer and devote resources needed to achieve rapid progress that will impact the mental and physical well-being of women in the United States. One of the recommendations addressed the need for more effective supportive care interventions for breast cancer patients and their families. Research regarding the impact of cancer on the family and the caregiver of the cancer patient is now receiving increased support from the National Cancer Institute, the American Cancer Society, and the current research being conducted by Given and Given. The current research by Given and Given, "Family Home Care for Cancer - A Community-Based Model" (Funded by that National Center for Nursing Research #1R01NR01915), involves determining Assessment of the Caregiver 9 how cancer and its treatment alter the caregiver's daily life, the identification of services utilized by the caregiver, as well as the time and effort the caregiver expends caring for the breast cancer patient over the age of 65. Biegel, Sales, and Schultz (1992) examined caregiving and stress in cancer patients. Few studies examine the self—care demands (tasks) performed by the caregiver and whether caregiver distress is related to new roles within the relationship. Depression due to changes in long-standing relationships or the threat of the loss of a spouse/relative/friend are additional concepts to be explored. As a result, there is very little description on how the caregiver incorporates the physical involvement and the time involved into their daily lives. Family caregivers of older patients, many of whom are spouses in compromised health themselves, are at risk for becoming overburdened (Silliman, McGarvey, Raymond, and Fretwell, 1990). Interestingly, Barusch and Spaid (1989), found in their study of older adult spouse caregivers that, in general, female patients were more disabled than male patients and that consequently, the male caregivers performed more tasks than female caregivers in the following areas: communication, mobility, hygiene, dressing, and feeding. Matthew, Mattocks, & Slatt (1990), found that male caregivers, in general, were not the sole providers of care although they considered themselves the primary caregiver; and the male caregiver was less likely to assist in the activities that required more personal care. Assessment of the Caregiver 10 The diagnosis of breast cancer can change a woman's life and the lives of those close to her. Finding the strength to deal with the changes brought about by breast cancer can be easier for patients and those who love them when they have appropriate support services. Meeting with a nurse, social worker, counselor, or member of the clergy can be helpful to patients and families who want to talk about their feelings or discuss their concerns about the future or about personal relationships. Members of the healthcare team, especially the primary care providers, can gather the information and initiate community healthcare services to enable the caregiver to meet the demands of the breast cancer patient. To establish the resources needed, assessment of the caregiver's needs must first be identified. Primary care providers must be on the forefront of problem identification when dealing with home care needs of the caregiver to promote self-care postoperatively for the breast cancer patient as well as the caregiver themselves. PROBLEM STATEMENT The purpose of this scholarly project is to develop a clinical assessment form identifying the needs of the caregiver and the level of capabilities the patient and the caregiver have associated with achieving self-care. This assessment form will be utilized in the primary care setting prior to the patient undergoing surgical intervention for breast cancer. It is important to study the caregiver involvement, the current community or healthcare resources being utilized by the family, and the caregiver's needed resources both pre and postoperatively. Assessment of the Caregiver 11 Review of these items will establish appropriate healthcare interventions to meet, in a timely manner, the care demands being placed on the caregiver. A link between the primary care provider and the acute care setting for the caregiver and the breast cancer patient, may lead to improved patient outcomes. CONCEPTUAL DBFIMITIOMB Breast Cancer/Surgical Intervention Most breast cancer arises in the epithelial tissues of the ducts (ductal carcinoma) or lobes (lobular carcinoma). More than 20 histological types exist. The American Joint Commission on Cancer Staging divides all tumors into Stages 0 to IV, based on the size of the primary lesion and the presence of metastases. Stage 0 - there is no evidence of primary tumor. There is evidence of carcinoma in situ: intraductal carcinoma which is a proliferation of presumably malignant epithelial cells within the mammary ductal system. There is no evidence of invasion through the basement membrane into the surrounding tissue. Stage I is defined as a tumor 2 cm or less in dimension without lymph node involvement. Stage II is a tumor more than 2 cm but not more than S cm in dimension with or without axillary lymph node involvement. Stage III is a tumor more than 5 cm in dimension with fixed axillary node involvement, no distant metastasis. Stage IV is a tumor of any size with direct extension to the chest wall or skin and distant metastasis including metastasis to ipsilateral supraclavicular lymph nodes (Wingo, Tong, and Bolden, 1995; Baird, McCorkle, and Grant, 1991; Abeloff, Armitage, Lichter, and Nib, 1995. Assessment of the Caregiver 12 Historically, surgery has been the major intervention in the primary treatment of most stages of breast cancer. The Halsted radical mastectomy devised a century ago and its technical variant, the modified radical mastectomy, have provided unsurpassed contributions in controlling regional disease. The development of modern techniques of radiation therapy and the recognition of increased risk for distant micrometastases for tumors larger than 2 cm have led to breast-saving procedures. These breast-saving procedures are: quadrantectomy, lumpectomy, and wide excision, which are advantageous for maintaining body integrity (Bonadonna, et a1., 1995). Self-Care Demands of the Patient Self-care demands include the physical tasks performed by the caregiver for the breast cancer patient. Studies rarely examine the actual tasks performed by the caregiver (Biegel, Sales, and Schulz (1991). Satariano, et al. (1990), analyzed the levels of physical functioning by the patient (not the tasks assumed by the caregiver) undergoing breast cancer surgery and utilized ten physical activities: lifting items over ten pounds, reaching arms above and below shoulders, writing or handling small objects, standing in place for 15 minutes or longer, sitting for long periods, walking alone (up and down a flight of stairs), and walking one-half of a mile without help. These items represent both upper and lower body strength, balance and fine dexterity. Findings revealed that the patient age 55 to 74 reported greater difficulty than the control group in completing tasks requiring upper body strength. Little difference was shown at age 75 to B4. Assessment of the Caregiver 13 This study may confirm the assistance needed by the breast cancer patient to perform physical activities postoperatively but does not consider the demands placed on the caregiver of the patient. The data gathered will depend on role performance of the caregiver and patient, but just as important is the physical capabilities of the patient postoperatively. Little is known about how the assumed caregiving tasks are incorporated into the caregiver's everyday life. Caregiver A primary caregiver is the individual responsible for caregiving tasks, including emotional support and supervision of the family member with cancer (Laizner, Yost, Barg, and McCorkle, 1993). According to Given and Given (1990), a primary caregiver is a person who provides the most care for a patient (e.g., spouse, relative, close friend). Caregivers in the literature, unless stated otherwise, are generally considered to be "informal" or are not compensated by financial reimbursement. Family members who identified themselves as major providers of care or those providing daily assistance to the patient, are considered the primary caregiver (Cohen and Eisdorfer, 1988). The American Association of Retired Persons (AARP) and the Travelers Companies Foundation survey (1988) defined caregivers as persons who provided unpaid assistance for either, two Instrumental Activities of Daily Living (IADL); one Activity of Daily Living (ADL) to persons 50 years or older and those who help meet the patient's self-care demands as well as mobilize community resources for pre and postoperative time to promote self—care. Assessment of the Caregiver 14 Families are the primary source of assistance to patients with cancer (Lewis, 1986). Caregiving situations vary according to the patient-caregiver relationship. In the older cancer patients where the spouse is unable or is no longer living, the adult children will provide the care (Given and Given, 1991). This author defines the caregiver as the person who is the primary source of assistance for the breast cancer patient who has received surgical intervention. Caregiver Involvement to Meet Self-Care Demands - Provide Resources Caregiver involvement in assisting elderly patients to perform activities has been discussed in the long-term care literature (Horowitz, 1985; Caro and Blank, 1984; Montgomery, et al., 1985), but there is not extensive information regarding the long-term or short-term care needs and the provision of resources for the care of the elderly cancer patient. Definitions of involvement by the caregiver generally include direct care and those indirect activities of the caregiver that meet the self-care demands. Direct care includes the supervision of, arrangement for, assistance with, or performance of, those self-care and other tasks related to physical comfort and emotional support that maintain health. Direct care may include personal care, pain and other symptom management, and assistance with such medical care activities such as taking medications and wound management (Given and Given, 1991). Family caregiver involvement includes all activities that through communication with the healthcare provider provide Assessment of the Caregiver 15 continuity of care and allows the patient to remain at home to receive personal care. These indirect tasks may include cooking, cleaning, shopping, money management, scheduling, and transportation of patients to their cancer treatments. There is very little evidence indicating how the number, amount, or ratio of personal to instrumental tasks may be related to the specific cancer site (Given and Given, 1991). Community Bealthcare Services There are two types of resources available for utilization: physician visits and health service resources. Physician visits include the number of physician visits, service use, and length of time for a typical visit. Hospital visits include laboratory tests, hospital readmission, nursing home admission/placement, emergency department or urgent care visits. In-home resources include: visiting nurses, home health aides/companions/sitters, and cancer therapies. Alternative therapies include: spiritual, relaxation, massage, herbal/vitamins, exercise, life-style, diets, acupuncture/acupressure, therapeutic touch, and therapeutic spas/retreats. Other resources may include social support and rehabilitation such as: occupational or physical therapy, hospice, home visits by a nutritionist, a counselor, a psychologist, or a social worker. Additional health services include: housekeeping, home delivered meals, and transportation. The increase in home healthcare delivery systems permits patients, families, and caregivers to have greater participation in the delivery of care and encourages them to acquire a higher Assessment of the Caregiver 16 level of knowledge about the disease and its management. As a link between the patient, the caregiver, and the healthcare resources being utilized, the primary care provider serves a valuable function to establish a level of care promoting self-care of the patient or caregiver since they are frequently the only healthcare professional with whom the patient and the caregiver interact. The level of competence held by the patient must be taken into account when healthcare services are initiated. In summary, the literature does not reveal an expansive base of inquiry regarding the self-care demands and the resources required by the caregiver of the postoperative breast cancer patient. There is limited research regarding the assessment of the caregiver and their ability to meet the self-care demands of the breast cancer patient. This author intends to provide an assessment form to be used to outline the needs of the caregiver which must be initiated in the primary care setting prior to the breast cancer patient undergoing surgical intervention. The assessment will enhance the primary care provider's ability to assist the caregiver to meet the self-care demands of the breast cancer patient. THEORETICAL FRAMEWORK To determine the self-care agency of patients, nurses seek to determine the following with respect to self-care: "what the Iindividuals can and cannot do now or in the future because of existing or predicted conditions and circumstances" (Orem, 1985). Examination of the following to determine the patient's ability to engage in self-care activities: "does the patient have Assessment of the Caregiver 17 the potential for consistent and effective performance of new and essential self-care measures, including the integration of these self-care measures into daily life?" (Orem, 1985). The self-care theory most commonly used in both the nursing clinical and research domains is Orem's 1991 Self-Care Deficit Nursing Theory (SCDNT) (Figure 1). According to Orem (1991), the SCDNT provides the necessary direction for nurses to establish a method for gathering information about their client and their environment. This information will assist the healthcare team, along with the caregiver and patient, to make deductions and decisions about how the healthcare team can help the caregiver and patient maintain self-care. The theory is based on the premise that all individuals are capable of self-care and that the actions of the healthcare team are directed at assisting the caregiver and patient in the endeavor of self-care. An understanding of the major constructs associated with Orem's general theory is essential to the clinical use of the model. Orem's general theory incorporates three related theories: the theory of self-care deficit, the theory of self-care, and the theory of nursing system (Figure 1). Self-care deficit refers to those persons that, due to health-derived limitations, are rendered incapable of self-care and may result in ineffective care (Orem, 1985). According to Orem (1991), deficit refers to the relationship between the action individuals should be taking and the action individuals are capable of taking. The actions for self-care by the patient and the caregiver need to be explored through the initiation of the Assessment of the Caregiver 18 self -care R R self -care R self -care agency demands L /\ R R seli-care capabilities (nursing agencyi meat... (uncut or projected) FIGURE 1: OREM'S CONCEPTUAL FRAMEWORK FOR NURSING (OREM, 1985, p. 32) Assessment of the Caregiver 19 assessment form. Through careful questioning, specific needs can be identified to assist the patient and the caregiver toward maintaining or improving their level of self-care. Self-care deficit exists when the self-care agent (caregiver) is unable to meet their self-care demands. The ability to perform self-care duands may be influenced by age, gender, developmental state, health status, and the availability of healthcare or community resources (Figure 2). To determine the relationship within the concept of deficit, the theory has established these variables, which include two patient variables of self-care agency and therapeutic self-care demands on one nursing variable, nursing agency. Self-care agency is based on the assumption that all individuals have an innate need to take care of themselves. Self-care agency is "the complex acquired ability to meet one's continuing requirement for care that regulates life processes, maintains or promotes integrity, and promotes well-being" (Orem, 1985). The ability of the caregiver to take care of the patient at home needs to be addressed prior to discharge from the acute care facility. The change in the healthcare needs of the patient may have an effect on the self-care agency of the caregiver. A shorter length of hospital stay with an associated increase in the home care needs of the patient places additional demands on the caregiver. Belf- care agency will vary with health state, elements and life experiences that influence one's ability to learn, and exposure to cultural influences that make use of resources in daily living situations (Orem, 1991). The development of self-care agency is Assessment of the Caregiver 20 mm Mum mm R mu (ECHONA) a m mm WWW, mm “new ---=potentialdefidt FIGURE 2: CAREGIVER OP BREAST CANCER PATIENT SELF-CARE/ AGENCY Assessment of the Caregiver 21 aided by "intellectual curiosity, by instruction and supervision from others, and by experience in performing self-care measures" (Orem, 1991). A dependent-care agent (caregiver), may be a parent, spouse, significant other, sibling, or legal guardian. The caregiver involvement may include performing self-care tasks (IADLs or ADLs) for the patient who is unable to perform self-care measures (self- care deficit). To enable the caregiver to remain involved (dependent-care agent) to meet the self -care demands of the patient, enhancement of self-care competence of the patient and the dependent care agent who is the caregiver with the promotion of health in the caregiver is necessary. Through Orem's theory of self-care, the caregiver and the patient must be assessed to determine if the demands outweigh the abilities of the caregiver and/or patient to provide self-care. The use of the assessment form will provide this information and the potential resources or interventions needed by the healthcare provider to ensure self- care of the caregiver and patient. An advanced nurse practitioner can facilitate and enhance the caregiver's self-care competence. This assessment (assessment form) will assist in the development of the self-care agent (patient) and the dependent-care agent (caregiver) to meet the patient's self-care demands being imposed on the caregiver through the use of appropriate resources or nursing systems (Orem, 1985) (Figure 2). A nursing system is "a continuing series of actions produced when nurses link one way with a number of ways of helping persons Assessment of the Caregiver 22 under care that are directed to meet the person's therapeutic self-care demands or to regulate their self-care agency" (Orem, 1985). Within the nursing systems theory, Orem (1985) describes the nurses actions performed for the benefit of others as having three dimensions. These dimensions include: wholly compensatory whereby the nurse performs all self-care tasks that the patient or caregiver is unable to perform; partly compensatory whereby the nurse and the patient or caregiver work together to meet the patient's self-care needs; or supportive-educative whereby the patient or caregiver acts as the self-care agent but requires assistance (self-care agency, dependent-care agent, or resources). LITERATURE REVIEW Research studies about family caregiving have increased over the past two decades. According to Stone, et a1. (1987), most studies are based on small, nonrepresentative samples of caregivers. In addition, many of the studies focus on a particular age group or disability with the results being limited in the areas of who the caregivers are, what they do, what needs they have, and what community resources are utilized (Biegel, et al., 1991). Care Demands Resulting From Breast Cancer Treatment The goal in caring for the patient undergoing breast cancer surgery is to promote physical and psychological recovery. In 1990, the average length of stay in the hospital for a woman having a mastectomy was one week or more. Today, for economic reasons and also because many patients prefer it, much care is now delivered in the home and the length of hospital stay is three to four days. In some areas of the country, it is an accelerated stay program of only 24 hours (Wingo, Tong, and Bolden, 1995). Assessment of the Caregiver 23 To meet the needs of the patient, there must be an assessment of the patient's and the caregiver's needs prior to admission for surgical intervention. All care must be coordinated in record time with most of the postoperative care and all rehabilitation taking place in the home. . Preoperative management is a crucial time for intervention by the advanced nurse practitioner because of the woman's decision-making process to undergo biopsy and mastectomy. A brief delay in therapy may be seen if the woman chooses to take the time to consider the alternatives of therapy between biopsy and final surgical intervention. The woman and her family need to realize the individual nature of breast cancer and be able to discuss it openly with the primary physician along with the alternatives of therapy. The primary care nurse (advanced nurse practitioner) is often in the position to be the patient/family advocate to facilitate meeting the needs of the patient and clarifying any misconceptions. Preoperative questions and concerns revolve around the surgical procedure and recovery time. But, more importantly, the anticipatory grieving for the loss of the breast, change in body image, and possibly the loss of self-esteem and sense of femininity must be addressed (Harwood, 1994; Johnson, 1994; Yasko, 1993; American Cancer Society, 1990; Wapnir and Rabinowitz, 1990; Jones and Reznikoff, 1989). Postoperative management of the breast surgical patient includes the physical, cosmesis, psychosocial, and sexuality issues. The physical issues regarding care of the surgical site Assessment of the Caregiver 24 (drains, dressings, observation), self-care tasks (bathing, dressing, hand, and arm care to prevent complications), comfort (pain management), and acceptable exercise regimens are all done by the family/caregiver if the patient is discharged in 24 hours. Cosmesis is concerned with the temporary prosthesis, incisional healing and the fitting for a permanent breast form. Providing a reach to recovery kit if the patient wishes, and any changes to the present wardrobe and the assessment of the patient's need for further information about reconstructive breast surgery must be addressed (Johnson, 1994). The psychosocial needs incorporate the expression of feelings, fears, and concerns about the loss of the breast. The incision and the relationship with the spouse or significant other must be addressed by the family/caregiver. Identification of the sources of support with the patient over the next few months, such as the spouse, family, friends, and clergy along with discussion of sexual relations and the fear of rejection by the partner are important issues to explore with the patient and the partner (if appropriate). Reaffirm the need for frank discussion between sexual partners and the need for adjustment time for each partner to become accustomed to changes in appearance of the surgical area. Explore alternate sexual positions that may be more comfortable for each partner and to reduce pain in the surgical area (Mirolo and Bunce, 1995; Johnson, 1994; Baird, et al., 1991; Satariano, et al., 1990; Wapnir and Rabinowitz, 1990; Rust and Kloppenberg, Palmer, 1990). Assessment of the Caregiver 25 The management of breast cancer patients and the family demands a comprehensive team of healthcare professionals to work with the patient and family members/caregiver. The team members perform a variety of functions and provide the necessary information to meet all the needs of the breast cancer patient. The practice of healthcare has evolved to assist patients and their families in many ways: through education, by providing psychological support, by skillfully delivering therapy, by assisting with rehabilitation, and by providing comfort and care. Self-Care Demands When patients are unable to do their share of tasks, caregivers must perform their own tasks and those of the patient. Caregivers who work must provide care, shop, interact with healthcare agencies, cook, and provide transportation. In addition, the caregiver may be involved in bathing, dressing, toiletting, and cleaning which are very personal tasks that may be distressing for both parties. Spouse caregivers are more likely to be expected to provide these care tasks (Given and Given, 1991). Research is needed to describe how the course of the disease and associated treatment influence the patient's demands placed on the caregiver, beginning with initial treatment. Without this information, it is difficult to understand the impact of self-care demands of patients on their caregiver. Family caregivers report that self-care demands by patients are difficult and tiring (Palmer, 1988). Caregiving involves tasks that may be unpleasant Assessment of the Caregiver 26 and uncomfortable and vary considerably with the type and stage of illness (Biegel, et al., 1991). Costs of hospital services and the impact of diagnosis- related groups (DRG's) have contributed to decreasing lengths of hospital stays. As a result, the responsibility of providing care for the patient with cancer at home often rests with the family members. This responsibility contributes to stress for family caregivers because of their lack of knowledge and skills required in managing the day-to-day care of the patient (Cawley and Gerdts, 1988). Patients are being discharged from hospitals with increasingly complex technological equipment and require monitoring of ongoing medical treatments. Cancer patients and their family members/caregivers are finding themselves responsible for complex tasks related to cancer care for which they have received little or no advance preparation or training (Bender, Weiner, Faulkner, and Quimby, 1992; MoCorkle, et al., 1994). Considerable difficulty may be experienced by cancer patients and their families due to their unmet physical and psychosocial home care needs (Bouts, Yasko, a Kahn, 1986; Bouts, Yasko, 5 Harvey, 1988). Caregiver Findings show that almost 7,000,000 households, or almost eight percent of all 0.8. households contain a caregiver. Male caregivers are more likely to assist with the less personal IADLs as opposed to the ADL that require more personal care (Mattocks and Slatt, 1992). Assessment of the Caregiver 27 Breast cancer has psychological consequences not only for the patient but also for the entire family system. A major impact is on the husband and the family roles and responsibilities. Greater attention needs to be given to the family members to ensure that they have the support they need, and to enable them to maintain their supportive roles with the breast cancer patient (Northouse, et al., 1991). Distress levels reported by the breast cancer patients and their husbands are not confined to the early phase of the illness but persist over time for both patient and husband. Nursing implications center on the importance of long-term, ongoing assessment (Northouse, 1990). A variety of intervention strategies have been used to assist spouses in dealing with the stressful effects associated with breast cancer. Two major categories of intervention strategies are providing information and offering support (Northouse, et al., 1993). An exploratory study of 49 family caregivers of cancer patients described the caregiving tasks, examined caregivers' appraisals of their situations, and explored what variables are predictive of caregiver mood. The 24 men and 25 women in the study reported spending most of their time giving emotional support and assisting with household tasks, errands, and transportation. Giving emotional support was the most time- consuming and difficult task (Carey, et al., 1991). Physical symptoms and the need for a caregiver was the predominant issue for the patients in the study conducted by Oberst and Scott (1988). The study revealed the most acute Assessment of the Caregiver 28 physical needs were noted during the first three months after discharge. A more recent study by Oberst and Munkres (1992), compared the needs of patients during the initial treatment and those undergoing recurrent cancer treatment. The results suggest these with recurrence had a higher symptom distress level and need for self-care assistance. The conclusion for nursing interventions is a need for different plans of care for the two groups. Findings suggest a need for frequent reassessment of demands on family caregivers throughout the course of treatment (Oberst, et al., 1992). The pattern of problems reported by patients and their spouses was remarkably similar. Spouses consistently reported more life-style disruption than did patients (Oberst and Scott, 1988). The caregiver role requires round-the-clock vigilance and family members must adjust many family routines and cope with many changes and uncertainties during the course of caregiving (Cohen and Bisdorfer, 1988). Studies rarely examine actual tasks (assistance) performed by the caregiver. As a result, little is known about the amount of time involved in the provision of the caregiving tasks. Spouses appear to assume responsibilities for caregiving alone. This may be more problematic for the middle- aged couple who tries to maintain all of their normatively defined roles, than for the elderly who may have fewer pressing daily demands (Given and Given, 1991; Krause, 1990). In review of the caregiver role, little is known about the specific self-care needs of the caregiver. The caregiver role of the breast cancer patient needs to be explored in association with Assessment of the Caregiver 29 the resources being utilized for the enhancement of self-care by the patient. Caregiver Involvement to Meet Self-Care Demands As families assume more responsibility for home care, the course of the disease and its treatment impact on the patient's needs, and the impact of the care demands upon the family members are important issues to be addressed (Northouse, et al., 1991; Jensen and Given, 1991; Northouse, 1989; Lewis, 1986; Cassileth, et al., 1985; Lewis, 1989; Lewis, Woods, Rough, and Bensley, 1989; Oberst and Scott, 1988). The impact that cancer has on the family can be described as "illness-related work" (Corbin and Strauss, 1988). The caregiver must assume the illness-related work as well as customary work and household roles. The work of several major studies was classified into three major categories of the concrete needs of the cancer patient: physical needs, instrument needs, and administrative needs (Nor, Guadognoli, and weal, 1987). Route, et al., (1991), discussed the kinds of information needed by family members of cancer patients and why families frequently lack the needed information. This lack of needed information regarding the care requirements of the cancer patient, negatively affects the patient's care as well as the physical, psychological, and social well-being of the family members. Patient needs revolve around managing symptoms, personal care, complying with treatment regimens, financial management, and assisting patients with their anxiety and depression (Munkres and Oberst, 1992; Wellisch, DiMatteo, et al., 1989; Hinds, 1985). Changes in role performances among family caregivers were reported in a 1979 American Cancer Society study in which 35 percent of Assessment of the Caregiver 30 families reported roles had changed due to caring for a cancer patient. Research has included role alternation for the caregiver of the breast cancer patient, as well as that of a cancer patient within the aggregate. Role changes included are those surrounding the tasks, emotion, and psychosocial issues (Lewis, Hammond, 8 Woods, 1991; Northouse 1990). Role changes include restrictions and alterations in homemaking, parenting, and companionship. Blank, Clark, et al., (1989), Welch (1982), and Northouse (1990), found that caregivers experienced changes in household roles, restricted role activities, and altered responsibilities. White, Zahlis, and Shanda (1991) reported that in the early phase, after newly diagnosed breast cancer, 61 percent of the caregivers had to alter their roles. Given, Given, and Stommel (1994), calculated the average time spent by the caregiver over a three-month period with cancer patients. The average daily time was about five hours. McCorkle and Wilderson (1991) found the caregiver's initial involvement was related to the patient's self-care demands (eating, dressing, bathing, and toiletting). The provision of care to a family member who has a chronic illness involves a significant expenditure of time and energy over potentially long periods of time (Biegel, 1991). According to Carey, et al. (1991), the greatest expenditure of energy and time revolved around the emotional support required by the breast cancer patient from the caregiver. Time can be measured in minutes per event or times per day or per week the primary Assessment of the Caregiver 31 caregiver reports devoting to the self-care demands of the breast cancer patient. Ambulatory treatment for the cancer patient has increased the patient's self-care demands on the caregiver for transportation, side effect management, and psychosocial issues (Oberst, et al., 1989). The caregiver role to meet the self-care demands of the breast cancer patient needs to be explored. Role changes, current health status and the level of involvement of the caregiver needs to be documented and addressed prior to the discharge of the patient. The primary focus of this author is to establish an assessment form for the caregiver to identify their needs to meet the self-care demands of the breast cancer patient post surgical intervention. This assessment of the caregiver will begin in the primary care setting, prior to the patient receiving surgical intervention and the reassessment will take place prior to the breast cancer patient being discharged from the acute care facility. Community Resources The use of community resources includes people and services that will assist the breast cancer patient and their caregiver to manage more effectively the course of the disease from diagnosis through and including the post surgical intervention. The postoperative care requires the ability to direct and perform a variety of tasks that are not routinely a part of the caregiver's role (Laizner, et al., 1994; Biegel, 1991; Cawley and Gerdts, 1988). Assessment of the Caregiver 32 As the healthcare system continues to change, families will be called upon to become more involved in the postoperative and rehabilitative care of the breast cancer patient. The primary healthcare provider will need to assess the instructional requirements necessary to attain the specific technical skills to care for the breast cancer patient post surgical intervention. Information and assistance from the primary care provider must include a plan for accessing and mobilizing resources necessary in providing home care (Given, Given, and Harlan 1994; Northouse et al., 1991; Houts, Yasko, Rahn, Schelzel, and Marconi, 1986). If community resources are poorly promoted, individuals will not know that they are available. A major issue concerning availability and utilization of resources is the mobilization of local resources by the healthcare team beginning at the primary care level, through the acute phase, and into the discharge follow—up care phase. The mobilization of resources is to provide the patient and their caregiver the resources needed such as home health nurses to promote self-care and prevent untoward complications postoperatively for the breast cancer patient (Munkres, Oberst, and Hughes, 1992; Satariano, et al., 1990; Oberst and Scott, 1988). Community resources may be difficult to locate due to the unavailability of specialised health services, lack of transportation and geographic distance to specialty care, lack of full range of health and community services, poverty, poorly educated residents, or the reliance on informal care systems such as family and friends (Given, Given, and Harlan, 1994). Assessment of the Caregiver 33 The patient's number of functional limitations increases the hours or degree of assistance needed from others, including community resources (Miller, 1992; Ahroni, 1993). Assistance will be affected by many other factors including the involvement of family members in informal support and the assistance received from formal healthcare agencies (Noelker and Bass, 1989; Stone, Cafferata, and Sangl, 1987). Community resources must expand to include avenues of care for the postoperative breast cancer patient. Education of the community about the resources available along with directions for accessing these resources must be in direct alignment with the current healthcare changes. With the decrease in the postoperative hospital length-of-stay, the community must rise to the situation and provide the resources required for home care. SUMMARY The review of the literature indicates the ongoing rise in the incidence of breast cancer to one in eight in women. The increase in the incidence of this disease directly correlates to an increase in the number of caregivers required during the postoperative recovery period. The caregiver role will expand with the economic crunch and the rapidly changing healthcare system (decreased length-of-stay), the majority of postoperative care will take place in the home by a caregiver. To establish the competence, willingness, and capability of the caregiver to perform the self-care activities and the postoperative tasks required, an assessment of the current and postoperative Assessment of the Caregiver 34 environmental and physical resources needed by the caregiver and patient must be explored. PROJBCT DIVILOPIIIT This author has attempted to explore and condense the literature concerning breast cancer, the various surgical interventions, and the caregiving needs of the woman age 65 and older. The impact of caregiving responsibilities and the assistance being provided to ensure the health of the caregiver needs to be explored. The assessment of the caregiver is of utmost importance when dealing with the healthcare changes of today. The decrease in length-of-stay for the breast cancer patient to three days, and in some instances only 24 hours, necessitates a comprehensive assessment of the support systems available to the breast cancer patient postoperatively. Bach healthcare provider may participate in evaluating the caregiver for self-care capabilities and the self-care demands of the breast cancer patient postoperatively. The initial assessment of general information and the health history of the caregiver begins with the primary care provider and continues to the acute care setting with the follow-up being accomplished with the primary-care provider. The general information will provide demographics, other dependents, and current self-care initiatives for health promotion. The health history will provide the self-care agency of the caregiver for themselves and will identify potential health issues that may inhibit the caregiver to meet the self-care Assessment of the Caregiver 35 demands imposed by the breast cancer patient. The activity status of the caregiver will establish current roles within the household and describe areas of concern for self-care by the caregiver. Appropriate resources must be identified to meet the needs of the caregiver and ultimately meet those of the breast cancer patient. The identification and initiation of these resources may be done by the advanced nurse practitioner, the case manager, social worker, or other healthcare providers. These resources act as the supportive system within the Orem conceptual framework for nursing system. The use of Orem's framework and theory for self-care and self-care demands of the breast cancer patient on the caregiver, places emphasis on the need to ensure the caregiver's capabilities to provide care for the patient. The primary healthcare provider must intervene to assist in the establishment of resources required by the caregiver during the recovery period for the breast cancer patient. The goal is to establish an appropriate plan of care for the breast cancer patient prior to admission for surgical intervention. This plan of care must begin in the primary care setting through accuracy of assessing the patient's needs, then the caregiver's needs, providing educational programs, and swift interaction with the healthcare institution (hospital, case management, or social services) with the development of community resources necessary to support the patient and the caregiver postoperatively. The goal of this assessment form is to establish a network of information regarding the needs of the patient and the Assessment of the Caregiver 36 caregiver prior to any interruption of health status of the breast cancer patient and to promote a smooth and uneventful recovery from breast cancer surgery. As the trend for early discharge continues, the family support system must assume greater responsibility for maintaining what is often a very aggressive post—hospitalization treatment plan (Feuer, 1987; Otto, 1994). ASSISSIIIT FORM AND RBLATICI’TO ORSI'S THIGH! The relationship of the assessment form to Orem's theory of self-care is obvious (Figure 2). The assessment form is divided into two sections, A and B. Section A is designed to provide information describing the current self-care needs of the caregiver. The general information section is to identify demographics of the caregiver in relation to the patient. The "health history" section as well as the "activity status" section outline the current health status (self-care agency) of the caregiver. Current resources (supportive) section provide a review of assistance being received by the entire household. These resources or levels of assistance are seen through Orem's theory as supportive-nursing for the caregiver and patient. Section 8 refers to the discharge planning for the caregiver to meet the self-care demands of the patient. This section will elicit the readiness and ability of the caregiver to meet the self-care demands of the patient. The "discharge referral" section outlines the supportive needs for the caregiver and patient including the follow-up with the healthcare providers. The use of this assessment form for the caregiver of the breast cancer patient will begin in the primary care office. The Assessment of the Caregiver 37 identification for follow-up on a suspected breast mass will begin in the primary care setting with a referral to a surgeon, if appropriate. The initial assessment of the caregiver will be introduced at the time it is decided that breast surgery is indicated. The assessment will be used to assist families who provide cancer care. The first assessment should be done in the primary care setting prior to admission to the hospital. This assessment will assist the healthcare providers at the hospital to achieve maximum care of the patient by the caregiver upon discharge. The assessment will also identify any needs the caregiver may have while the patient is undergoing hospitalization or during the time needed for recovery. Planning ahead will encourage home care without fear, anxiety, or frustration by the patient or the caregiver. The assessment form, with section A being completed by the primary care office will accompany the admitting orders. The assessment form will then be kept on the patient chart for review and completion of section B by the case manager/designee. The assessment form will be in triplicate, the original will be returned to the primary care office to be placed in the medical record, a second copy will be returned to the surgeon's office to allow review of follow-up needs upon the return surgical appointment. And the third copy will stay in the medical record at the acute care facility. The patient or the caregiver will transport these materials to the office with the envelope containing the completed assessment and established plan for home Assessment of the Caregiver 38 care. The vital link between all healthcare providers will be established. Healthcare professionals should conduct a detailed, individualized assessment in order to plan for each phase of care with cancer patients and their families. This will insure that the formal care provided in outpatient settings is integrated with the home care provided by the family (Given and Given 1994). In the future, an integrated medical record for all disciplines, in all settings, may simplify the process of documentation and information sharing. The information sharing regarding the care of a patient and caregiver establishes a method for collaboration within the multi-disciplinary healthcare team with the potential outcome of improved patient care. IVALDITIOI Evaluation of this assessment form is recommended 90 days after implementation. At that time, any additions or deletions can take place to ensure effectiveness of the form. It is recommended that a multi-disciplinary group meet to establish redesign needs and clarify any individual discipline needs. An exchange of information as to the effectiveness of the form in regard to home care and caregiver response must be explored. The following are specific assumptions suggested for evaluation of the effectiveness of this assessment form: 1. Improved comprehensive care plan for the breast cancer patient through the utilization of the caregiver assessment. The completion of the document would elicit information to prove a comprehensive plan of care had been established prior to Assessment Of the Caregiver 39 PRIMARY CAREGIVER’S NAME: AGE: GENDER: MARITAL STATUS: NUMBER OF HOUSEHOLD MEMBERS: AGES: ADDRESS: TELEPHONE: (HOME): (WORK): ARE YOU EMPLOYED? YES CI NO [I YOUR RELATIONSHIP TO PATIENT; HEALTHOARE PROVIDERS: (CAREGIVER) PRIMARY CARE: OTHER: How Is YOUR ow~ HEALTH? EXCELLENT CI GOOD Cl FAIR El POOR CI mace "ne‘er announces”.- Do you have a history 0!? Currently being IresIed tor? Amm YES NO YES NO Cmoer YES NO YES NO om YES No YES NO Emom om YES NO YES NO Glaucoma YES NO YES NO Heart Disease YES NO YES NO Hepatitis YES NO YES NO HIoII Blood Pressure YES NO YES NO Kkhey om YES NO YES NO Lung Disease YES NO YES NO Seizures YES NO YES NO 3m YEs NO YES NO Tuberculosis YES NO YES NO Ulcers YES NO YES NO Other Illness. please specify: 00 YOU TAKE ANY PRESCRIBED MEDICATIONS? YES Cl NO I] If yes, please Specify: DO YOU TAKE ANY OVER-THE-OOUNTER MEDICATIONS? YES [:1 NC El lfyee, phasespedfy; Assessment of the Caregiver 40 I .. ‘ gas,..ff?ifTfi‘ilfifi$52717?731571;7727:ii.:7‘55???if??? mm I DO YGJ NEED ASSISTANCE AT HWE WHILE YOUR SPOUSE/RELATIVE/FRIEND IS IN THE HOSPITAL OR RECOVERING FROM SURGERY? YES Cl NO CI It ya. Plea- woolly two 0! help: DO YOU CARE FOR OTHERS IN YOUR HOME? YES CI NO CI iiyee.pieeeeepeciiycereprovidedendbwhcm; Mmflebdofllelmmww'w'no”: ”DQMM mm HAVEW DriveaCU YES NO D D CookMeds YES NO C] D Doinnd'y YES NO D D GDGncsryShopping YES NO [:1 D BsihSeiI YES NO D CI DreesSeIi YES m D D W‘KWIMW YES M) E] D WrIbChedc YES NO Cl C] TdoCUIOIFhmcee YES NO E] D LawnCUe YES NO D D HoueeRepdrs YES NO E] D bWthMWWMWuWMMw Meals on Wi'Ieeb YES NC Home Heeilh Nurelng YES NC Home Shopping YES NO Friendchb Cenbr YES NO Chore Service YES NO Housekeeping Service YES NO Transportation YES NO Orb-r. Pim- specify: defeflemdeyeummdbedbunmtem? DO YOU NEED ANY ASSISTANCE WITH TRANSPORTATION? YES U NO U DO YOU NEED AN APPOINTMENT WITH A SOCIAL wORKER AT THE HOSPITAL REGARDING RESOURCES AFTER DISCHARGE OR MEDICAL ASSISTANCE? YES El NO U DO YOU NEED AN APPOINTMENT WITH THE PERSON CALLED A CASE MANAGER WHO WILL ASSIST YOU IN PLANNING THE CARE FOR YOUR SPOUSE/RELATIVE/FRIEND? YES U NO 0 DO YOU NEED A UST OF LOCAL HOTELSIMOTELS? YES U NO U WILL ANYONE ACCOMPANY YOU TO THE HOSPITAL FOR YOUR SPOUSEIRELATIVE/FRIENDS SURGERY? YES El NC El Assessment of the Caregiver 41 SECTION B DO YOU HAVE PERSONAL FRIEND(S) OR FAMILY MEMBER(S) THAT WILL BE ABLE TO ASSIST YOU AT HWE? YES CI NO CI Pleseeclrde 'yes"or "no” to Unlollewlng [nearing Iorthepstlentstheme: Check here to receive Do you have the Mty to mange: further inlenndienlinetnrctien Bathing YES NC El Dressing YES NC El Feeaig YES N0 0 Cooking YES NO 0 Toiletlhg YES NO Cl Welling YES NC El Giving Medcetlone YES NO 0 Pen Wt YES NO 0 Change PM YES NO 0 Embment YES NC El Chemomerapy IV Lines YES NO 0 Rehebflmtlve Exercises YES NO El Emotional StetueMoodnees YES NC El Coordneflon of Care YES NO 0 ARE THERE ANY OF THE ABOVE ACTIVITIES THAT MAKE YOU FEEL UNCWFORTABLE? YES D NO D If m. Phi“ specify; OVERALL. DO YOU FEEL PREPARED TO PROVIDE CARE FOR YOUR SPOUSE/RELATIVE/FRIEND AT HCME? YES CI ND C] ilno.whetwouidhebyoubecomemoreprepered7 SocieISeMces: Home Health Aid/Chore Services Agency: Transportation Service: Support Group/Location: Prosthesis Service: E] E] El U D CI Follow-Up Appointment With; Oncologist: Surgeon; Family Practitioner: Assessment of the Caregiver 42 discharge. The completion Of the document would include information being provided by the case manager involved with the breast cancer patient. 2. Improved information sharing between healthcare team members (case managers, dieticians, pharmacists). A multidisciplinary approach to the plan of care for the breast cancer patient can only be accomplished if the communication between the team members is well documented and tells a complete story of the patient and the caregiver. The comprehensive care plan and the completion of the assessment form would elicit proof of shared information. The assessment form would provide a unified document for all disciplines to review. 3. Decreased length-of-stay for the breast cancer patient with adequate resources identified. Many acute care settings are currently undergoing major cost-containment measures. One of these is decreasing the length-of-stay. The breast cancer patient having a surgical intervention may be leaving the hospital in 24 hours versus the current two to three day stay. Evaluation of decreased length of stay will be through documentation of readmission. 4. Increased level Of dependent care by the caregiver and self-care by the breast cancer patient with the established plan Of care identified prior to surgical intervention. The initiation of resources prior to discharge for the breast cancer patient will allow the caregiver and the patient time to become educated, comfortable, and supported in their new roles. The question on the assessment form: "Overall, dO you feel prepared to provide Assessment Of the Caregiver 43 cars for your spouse/relative/friend at home?", should elicit a positive response after the establishment Of the plan Of care. 5. Increased healthcare provider satisfaction through providing quality care for the breast cancer patient as evidenced by appropriate discharge plan and documented patient outcome. Evaluation may include the necessity Of additional referrals, telephone calls by the patient or home health care provider and patient/caregiver verbal dissatisfaction. All of the above assumptions can be researched through a retrospective chart audit. The audit should include the completion of the assessment form: general information, health history, activity status, resources, discharge planning, and the referrals made to meet the home care needs of the caregiver and the patient. Evaluation of the assessment form and the patient outcome can be done through rates of complication, telephone calls to the healthcare provider with unanswered questions, readmission rates, and through reports received from the referrals made on discharge. The evaluation of the assessment form should include satisfaction of the healthcare provider. The satisfaction can be established through the multidiscipline team. The coordination and analysis of this information must be done by the case manager overseeing the care of the breast cancer patient. If a case manager is not available, the primary care provider needs to initiate the use Of the assessment and remain accountable for the completion Of the form and follow-up. Continued assessment of the patient and caregiver after discharge Assessment Of the Caregiver 44 will need to occur in the primary care setting. Education of the multidisciplinary team must be synchronized to allow all team members the Opportunity to review, utilize, and alter the form to meet the unique needs of the community. An annual review of the form for clarity and currency of information is essential. The continuation of quality of care for the breast cancer patient and the caregiver is of utmost importance. IMPLICATIONS FOR ADVANCED IDES! PRACTITIOMIR The nurse in advanced practice must face the many changes occurring in society, healthcare, and nursing with motivation, drive, and creativity. Fervent demands from the consumers and third party payers for greater fiscal responsibilities, client- oriented care, and accuracy while maintaining efficiency and cost- effectiveness are necessitating our immediate attention for change. Change is an ongoing process throughout our life and the healthcare system is no exception. Healthcare providers will need to respect the changes that are occurring within society and the healthcare system to remain an integral part of the healthcare system. They will be expected to respond to these demands through collaboration and cooperation with other healthcare professionals. The healthcare team, especially the primary care network, must cultivate and nurture collegial relationships to ensure effective and efficient (cost- effective) healthcare delivery to all of our consumers. Collaborative practice and the integration Of roles throughout the healthcare profession will only be accomplished through commitment to the nurse-physician-client relationship. Assessment Of the Caregiver 45 Collaboration in the nurse-physician working relationship may help to integrate many elements that have been identified for the common goal of meeting the needs of the patient and the caregiver. These extensive elements include the need Of joint responsibility for outcomes, integration of ideas, and the sharing Of information and expertise. This assessment form will allow for the collaboration needed to provide a comprehensive plan of care for the breast cancer patient and their caregiver. Collaboration may take place in a variety Of healthcare settings such as: private practice, the acute care hospital, and home health programs. The advanced nurse practitioner (ASP) must work in collaboration with the physician, case manager, and other healthcare disciplines to exchange information and to promote client care through problem-solving to establish a successful plan Of care for the breast cancer patient and the caregiver. In today's healthcare system, the evaluation Of the client outcomes will play a key role in the reimbursement issues that face all healthcare providers in any setting. The evaluation of client outcome looks at the end result of postoperative as well as the long-term cancer survivorship. The changes in a patient's/caregiver's health status that can be attributed to the type of services provided, and the delivery system utilized and the continued follow-up with the primary care provider. Outcome measurement needs to focus on the well-being Of the patient and the caregiver in terms of functional status, mental status, stress, satisfaction with care, and cost of the care. Assessment of the Caregiver 46 Many hospitals have focused only on the mortality and morbidity rates. But the focus for outcome measurement is moving toward satisfaction with the services rendered, the setting in which services are rendered, and the cost and convenience for the patient (Naylor, et al., 1991). To accomplish the goals outlined above, the AMP will need to assume numerous roles during the development of a plan Of care for the breast cancer patient and their caregiver. The use Of the proposed form will provide the healthcare team with the basic information for establishing the needs of the caregiver and ultimately those of the breast cancer patient. Utilisation Of the assessor, collaborator, and educator roles will foster the success of the proposed assessment form. Utilisation of the assessment form will outline the needs of the caregiver to maintain personal self-care and enhance the self- care of the patient through identification of the resources required for a smooth discharge plan. The use Of the assessment form may identify patterns of discharge care needs and practice patterns of the healthcare providers. These patterns may provide information to the managed care system which will direct a plan Of care for the breast cancer patient. This plan Of care will start in the primary care setting through treatment and follow-up utilizing the appropriate resources identified by using this assessment form. The ultimate goal is self-care for the breast cancer patient and the caregiver through shared information, appropriate implementation Of resources, and education of the healthcare team as well as the patient and caregiver. Assessment Assessment of the Caregiver 47 of the current situation must first be accomplished with follow-up on the course of care and the demands made upon family caregivers to ensure the resources provided were apprOpriate at the time Of discharge with reallocation Of resources as needed during the course Of recovery for the breast cancer patient. IMPLICATIONS FOR FUTURE RISIARCN Research regarding the needs Of the caregiver and the effect these self—care demands have on the caregiver requires further exploration. In order to meet the needs of the caregiver, baseline data must be gathered and analysed. A longitudinal approach to data collection is essential to establishing the caregiver needs Of the breast cancer patient at various stages Of the disease and the associated treatment plan. The family caregivers may differ as to when and what types of assistance they are most likely to require (Mer, Masterson- Allen, Houts, and Siegel, 1992). The capacity of family caregivers to adequately implement complex therapeutic regimens, to manage home care technology, to meet patient's needs for symptom management, to help patients follow good dietary regimens, and to maintain patient's emotional health is likely to influence patient's capacities to remain in treatment. This may well lead to fewer readmissions to the hospital for pain or symptom management and lead to more favorable treatment outcomes (Rahana, Biegel, and Wykle, 1991). Outcomes for the patients may include readmissions, altered treatment cycles, and work loss. Outcomes for the caregiver include role adaptation, work loss expenditures, and impacts on health (physical/psychological). Assessment of the Caregiver 48 Further inquiry is needed to assure the assessment form is reliable and valid for the population intended, taking into consideration cultural/ethnic differences. Use Of the assessment form and its user-friendliness (benefits and barriers) must be examined. The form must be easy to use, easily understood by the caregiver, and must be an efficient method of sharing information. Today, healthcare demands fast, efficient (cost controlled), quality care with improved patient outcome. In summary, there are other issues related to caregiving that need to be explored. The current research serves as a beginning and sheds some light on several issues. Perhaps more importantly, it raises many critical questions for further research, public awareness, and the advent of community resources. Assessment Of this information will identify the needs for all healthcare providers involved in patient care and may provide a basis for universal information on the needs of the patient/ caregiver. Caregiving is, or will be, a reality for most Americans. It affects our families, Our workplaces, and our communities. The assistance provided by caregivers has its rewards and also may create some burdens. Future efforts to assess the needs Of the caregiver and to establish a comprehensive plan of care will require collaboration, creativity, and effective private and public initiatives that will truly support the caregiver and the patient. 49 References Abeloff, M., Armitage, J., Lichter, A., s Niederhuber, J. (1995). Clinical Oncology. Churchill Livingstone, Inc. Ahroni, J. (1993). Diabetic foot ulcer healing: Extrinsic vs. intrinsic factors. Wounds: A Compendium of Clinical Research, §(5), 245-255. American Association of Retired Persons and the Travelers Companies Foundation.(OctOber 1988). National survey of caregivers summary Of findings. Baird, 8., MoCorkle, R., 5 Grant, M. (1991). Cancer Nursing, A Comprehensive Textbogk. Philadelphia, PA: W.B. Saunders Company. Barusch, A. G Spaid, W. (1989). Gender differences in caregiving: Why do wives report greater burden? The Gerontologigt, 29, 667-676. Bender, L., Weinert, C., & Faulkner, L., et a1. (1991). Mbntana families living with cancer. Bozeman Montana College Of Nursing, Montana State University. Bergman, L., Dekker, D., 5 vanVeeuwen, F., et al. (1991). The effect Of age on treatment choice and survival in elderly breast cancer patients. Cancer, 67, 2227-2234. Bergman, L., Dekker, D., G VanKerkhOff, E., et al. (1991). Influence Of age and comorbidity on treatment choice and survival in elderly patients with breast cancer. Biegel, D., Sales, E., & Schulz, R. (1991). Family caregiving in chronic illness. Overview Of Family Caregiving. Newberry Park, CA: Sage Publications. 50 Blank, J., Clark, L., Longman, A., & Atwood, J. (1989). Perceived home care needs Of cancer patients and their caregivers. Cancer Nursing, 12(2), 78-84. Bonadonna, G., Valagussa, P., Zucali, R., G Salvadori, B. (1995). Primary chemotherapy in surgically resectable breast cancer. Ca - A Cancer Journal for Clinicians, 45, 227-243. Carey, P., Oberst, M., MOCubbin, M., 8 Hughes, 8. (November- December 1991). Appraisal and caregiving burden on family members caring for patients receiving chemotherapy. Oncolggy Nursigg Forum, 18(8), 1341-1348. Caro, F. and Blank, A. (November, 1984). Burden experienced by informal providers Of home care for the elderly. Cancer(4), 76-79. Casseleth, B., Lusk, E., Stouse, T., Miller, D., Brown, L., 5 Cross, P. (1985). A psychological analysis of cancer patients and their next-of-kin. Cancer, 55(1), 72-76. Cawley, M. G Gerdts, E. (1988). Establishing a cancer caregivers program: An interdisciplinary approach. Cancer Nursing, 11, 267-273. Cohen, D. s Eisdorfer, C. (1988). Depression in family member caring for a relative with Alzheimer's Disease. Journal of the American Geriatric Society, 36, 885-889. Corbin, J. & Strauss, A. (1988). Unending work and care: Managing chronic illness at home. London, England: Josey-Bass, 225-236. Feuer, L. (1987). Discharge planning: home caregivers need your support, too. Nursing Management, 18(4), 58. 51 Given, B. & Given, C. (1989). Family homecare for cancer - a community-based model (1 R01 NR01 915 National Center for Nursing Research). Michigan State University, East Lansing, MI. Given, 8. 8 Given, C. (1990). Their Voices Our Vision: Families Copinggwith Cancer. Paper presented at the meeting of Riverside Regional Cancer Institute's Second Annual "wellness and Quality of Life Issues on the Oncology Patient" Symposium, Riverside Methodist Hospital, Columbus, OH. Given, 8. 5 Given, C. (1991). Cancer survivorship: long term effects on family caregivers. Address given at the Ohcology Symposium, University Of North Carolina, Chapel Hill. Given, 8., Given, C., s Harlan, A. (1994). Strategies to meet the needs Of the rural poor. Seminars in Oncology Nursing, 10 (2), 114-122. Given, 8., Given, C., E Stommel, M. (1994). Family out- Of-pocket costs for women with breast cancer. Cancer Practice: A Multidisciplinary Journal of Cancer Care, 2(3), 187—193. Given, C., Stommel, M., 8 Given, 8. (1993). The influence Of cancer patients symptoms, functional states on patient depression and family reaction and depression. Health Psychology, 12(4), 277-285. Goodwin, J., Hunt, W., G Samet, J. (1991). A population- ' based study of functional status and social support networks of elderly patients newly diagnosed with cancer. Arch Intern Med, 151, 366—370. 52 Groenwald, 8., Fogge, M., Goodman, M., YarbO, C. (1990). Cancer nursing - principles and practice. Cancer Nursigg, 2, 366-371. Hand, R., Sener, 8., Imperato, J., Chiel, J., Sylvester, J., & Fremgen, A. (1991). Hospital variables associated with quality Of care for breast cancer patients. Journal of American Medical Association, 266(24), 3429-3432. Henderson, C. (1990) What can a woman do about her risk of dying of breast cancer? Current Problems in Cancer, 14(4). Mesby Year Book. Hinds, C. (1985). The Needs of families who care for patients with cancer at home: Are we meeting them? Journal of Advanced Nursing, 10, 575-581. Horowitz, A. (1985). Family caregiving to the frail elderly, Eisdorfer, C. (Ed.). Annual Review of Gerontology and Geriatricg, 5, 194. New York: Springer Publications. Houts, P., Harvey, H., Simmonds, M., Marshall, M., Gottleib, R., Lipton, A., Martin, 8., Dixon, R., Gelman, E., & Valdevia, D. (1985). Characteristics of patients at risk for financial burden because of cancer and its treatment. Journal of Psychosocial Oncolggy, 3(2), 15-22. ' Houts, P., Yasko, S., & Harvey, H. (1988). Unmet needs of persons with cancer in Pennsylvania during the period of terminal care. Cancer, 62, 627-634. Houts, P., Yasko, J., Kahn, S., Schelz, 5 Marconi (1986). Unmet psychological, social and economic needs of persons with cancer in Pennsylvania. Cancer, 58, 2355-2361. 53 Houts, P., Rusenas, I., Simmonds, M., G Hufford, D. (1991). Information needs of families Of cancer patients: A literature review and recommendation. Journal of Cancer Education, 6(4), 255-261. Jensen, 8. & Given, B.A. (1991). Fatigue affecting family caregivers of cancer patients. Cancer Nursing,_11(4), 181-187. Johnson, J. (1994). Caring for the woman who's had a mastectomy. American Journal of Nursing. Jones, D. G Reznikoff, M. (1991). Psychosocial adjustment to a mastectomy. The Journal Of Nervous and Mental Disease, 177 Rahana, E., Biegel, D., s Wykle, M. (1991). Family caregiving across the lifespan. London, New Delhi: Sage Publications. Rrouse, H. (1990). Stress, support, and well-being in later life: Focusing on salient social roles. IN M.A. Stephens, J.H. Crowther, S.E. Hobfoll, and D.L. Tennenbaum (Eds.). Stress and coping in later life families. Washington, D.C.: Hemisphere Publications. Rrouse, H. G Rrouse J. (1982). Cancer as crisis: The critical elements Of adjustment. Nursing,Research, 31(2), 96-101. Laizner, A., Test, L., Barg, F., a MOCorkle, R. (1993). Needs of family caregivers of persons with cancer: A review. Seminars in Oncolggy,Nursing, 9(2), 114-120. Lawton, M., Brody, E., A Saperstein, A. (1991). Springer Publications, 164. Lewis, F. (1986). The impact of cancer on the family: A critical analysis of research literature. Patient Education 5 Counseligg, 8(6), 269-289. 54 Lewis, P. (1989). Attributions of control, experienced meaning, and psychosocial well-being in advanced cancer patients. Journal Of Psychosocial Oncology, 7, 105-119. Lewis, F., Hammond, M., Woods, N. (1993). The family's functioning with newly diagnosed breast cancer in the mother: The development of an explanatory model. Journal Of Behaviorial Medicine(7), 351-370. Lewis, F., WOods, N., Hough, E., G Hensley, L. (1989). The family's functioning with chronic illness in the mother: The spouse's perspective. Social Science & Medicine, 29(11), 1261- 1269. Matthew, L., Mattocks, R., E Slatt, L. (1990). Journal of Gerontological Nursing, 16(10), 20-25. Matthew, L., Mattocks, R., G Slatt, L. (1990). Journal of Gerontological Nursing, 16(10), 36-37. McCorkle, R. & Wilkerson, R. (1991). Home care needs of cancer patients and their families, Final Report (NR01914). National Center for Nursing Research, Philadelphia, PA. Miller, L. (1992). Postsurgery breast cancer outpatient program. Clinical Management, 12(4), 50-56. Montgomery, R., Gonjea, J., & Hooyman, N. (1985). Caregiving and the experience of subjective and objective burden. Family Relations, 34, 19-26. Mor, v., Guadognoli, E., Silliman, R., Weitberg, A., Glicksman, A., Goldberg, R., Cummings, F., & Masterson-Allen, s. (1989). Influence of Old age, performance status, medical and psychosocial status on management Of cancer patients. 55 IN R. Yancik and J.W. Yates (Eds.). Cancer in the elderly approaches to early detection and treatment (127-146). New York: Springer Publications. Mor, V., Guadognoli, E., & Wool, M. (1987). An examination of the concrete service needs of advanced cancer patients. Psychosocial Oncology, 5, 1-17. Mor, V., Masterson-Allen, S., Houts, P., & Siegel, R. (1992). The changing needs Of cancer patients at home. Cancer, 69(3), 829-838. Munkres, A., Oberst, M., 5 Hughes, 5. (1992). Appraisal of illness, symptom distress, self-care burden, and mood states in patients receiving chemotherapy for initial and recurrent cancer. Oncolggy Nursing Forum, 19(8), 1201-1209. N.C.I. Cancer Stat Review. National Institute Of Health. (1990). SEER Cancer Statistics Review 1973-1990. (NIH Publication NO. 90-2789), Bethesda, MD. National Cancer Institute. N.C.I. Cancer Stat Review. National Institute of Health. (1993). SEER Cancer Statistics Review 1973-1987. (NIH Publication NO. 90-2789), Bethesda, MD. National Cancer Institute. N.C.I. Cancer Stat Review. National Institute Of Health. (1994). Cancer Statistics Review 1973-1987. (NIH Publication NO. 90-2789), Bethesda, MD. National Cancer Institute. Naylor, M. (1991). Measuring the effectiveness of nursing practice. Clinical Nurse Specialist, 5(4), 210-215. 56 Noelker, L. 8 Bass, D. (1989). Longitudinal impact Of interhousehold caregiving. Psycholggy and Aging, 4(4), 393- 401. Northouse, L. (1988). Social support in patient's or husband's adjustment to breast cancer. Nursing Research, 37, 91-95. Northouse, L. (1989). The impact of breast cancer on patients and husbands. Cancer Nursing, 12(5), 276-284. Northouse, L. (1989). A longitudinal study of the adjustment of patients and husbands to breast cancer. Oncolggy Nursing Forum, 16(4), 511-516. Northouse, L., Cracchiolo-Caraway, A., & Appel, C. (1991). Psychologic consequences of breast cancer on partner and family. Seminars in Oncology Nursing, 7(3), 216-23. Northouse, L. e Peters-Golden, H. (1993). Cancer and the family: Strategies to assist spouses. Seminars in Oncology Nursing, 9(2), 74-82. Numbers, A., Oberst, M., S Hughes, 8. (1992). Appraisal of illness, symptom distress, self-care burden, and mood states in patients receiving chemotherapy for Initial and Recurrent Cancer. Oncology Nursing Forum, 19(8), 1201-1209. Oberst, M. G Scott, D., (1988). Post-discharge distress in surgically treated cancer patients and their spouses. Research in Nursigg 5 Health, 11(4), 223-233. Orem, D.E. (1985). Nursing: Concepts of Practice. New York: McGraw-Hill. Otto, S. (1994). Oncology Nursing. St. Louis: Mosby Year Book. Palmer, M. (1988). Incontinence: The magnitude Of the problem. Nursing Clinics of North America, 23(1), 139-157. 57 Satariano, W., Ragheb, N., Branch, L., 5 Swanson, G. (1990). Difficulties in physical functioning reported by middle-aged and elderly women with breast cancer: A case-control comparison. Journal of Gerontology: Medical Sciences, 45(1), M3-11. Silliman, R., Guadognoli, E., Weitberg, A., & Mbr, V. (1989). Age as a predictor Of diagnostic and initial treatment intensity in newly diagnosed breast cancer patients. Journal of Gerontology: Medical Sciences, 44(2), M46-50. Stone, R., Cafferata, G., G Sangle, J. (1987). Caregivers of the frail elderly: A national profile. The Gerontologist, 27, 616-626. The Travelers Companies Foundation (October 1988). National survey Of caregivers summary. Wapnir, I., Rabinowitz, H., 8 Greco, R. (1990). A reappraisal of prophylactic mastectomy, collective review. Gynecology and Obstetrics, 171, 234-247. Welch, D. (1982). Anticipatory grief reactions in family members Of adult patients with cancer. Issues in Mental Health Nursing, 4(2), 149-158. Wellisch, D., DiMatteO, R., Silverstein, M., Landsverk, J., Hoffman, R., Waisman, J., Handel, N., Waisman-Smith, E., G Schain, W. (1989). Psychosocial outcomes Of breast cancer therapies: Lumpectomy versus mastectomy. Psychomatics, 30(4), 365-373. White, E., Zahlis, E., 8 Shands, M. (1991). Breast cancer: Demands Of the illness on the patient's partner. Journal Of Psychosocial Oncology, 9(1), 75-93. “33224 9 Mine