- Email: [email protected]
The stroke patient and assessment of caregiver needs
PAGE 62
JOURNAL OF VASCULAR NURSING
SEPTEMBER 1998
The stroke patient and assessment of caregiver needs Mary K. Dorsey, RN, MSN, CVN, and Kathy J. Vaca, RN, BSN, CCRN
Currently, morbidity and mortality rates after stroke are declining as a result of advances in medical care and technology. Despite this decline, the physical, emotional, and psychologic effects of stroke remain devastating. Continuous requirements and long-term commitment with limited resources are a reality for many caregivers. Common problems include role changes, stress, social isolation, and financial burden. A supportive and encouraging atmosphere by the caregiver and an understanding of the emotional and physical challenges that are faced by the person who has had a stroke are essential determinants of a successful rehabilitation. (J Vasc Nurs 1998;16:62-7.) Stroke, or cerebrovascular accident, is defined as the sudden or acute focal neurologic deficit, nonconvulsive in nature, that results from a pathologic process involving cerebral blood vessels. 1 Stroke affects approximately 500,000 persons in the United States each year and is the third leading cause of death in the United States. 2 In addition, stroke accounts for half of all patients hospitalized for acute neurologic disease and is the leading cause of serious, long-term disability in the United States. 2 Approximately 10% to 30% of all persons who have a stroke will require institutional care after discharge from an acute-care setting) The remaining two thirds of persons who have had a stroke return to a home setting with family caregivers (Figure 1). Whether placement should be in a rehabilitation facility or the home often is determined by personal decision or dictated by health care benefits. Few guidelines, if any, are available to aid in discharge planning. Family members may be unprepared for the amount of care required by their loved one after stroke; they often are emotional and overanxious to return the patient to the home setting before adequate teaching is completed. Researching the effect of stroke on the caregiver as well as the patient may be helpful in providing guidelines for the care of persons who are not placed in rehabilitation facilities. REHABILITATION: SURVIVOR Initially, the nurse, as well as the significant others, should understand the effects of stroke on the patient's physical, emotional, and psychosocial well-being. When damage occurs in any
OUTCOME OF STROKE PATIENTS INSTITUTIONALIZED 16%
DEATH 16%
HOME 68%
Figure 1. Outcome of stroke patients. (Courtesy of Saint Louis University Health Sciences Center, St Louis, 3/lo).
portion of the brain, not only are the primary functions of that region of the brain disturbed, but also the entire brain suffers from the loss of communication with the injured portion. In addition, the remaining normal portions of the brain are deprived of input from the damaged area and therefore are subject to abnormal messages and misinformation generated as a result of the lesion. 4 This perspective means that a lesion affecting the left hemisphere of the brain not only causes deficits in the right side of the body but also indirectly affects the whole brain and therefore the whole body. Persons who have had stroke frequently have mood disturbances. Anxiety, frustration, and despair occur in reaction to the physical, cognitive, and psychosocial changes that result from stroke. 5 One year after having a stroke, one third of patients are clinically depressed; 2 years after having a stroke, 40% of patients meet the criteria of major depression. 6 Early identification of depression can determine the potential success of the rehabilitation effort. At the same time, the caregiving family may feel individual or family anxiety, coalesce about the identified person, or become dysfunctional as a result of disrupted patterns of roles, communications, or operations. 7 The psychologic effects of stroke are more subtle than are the physical and emotional effects. Ahlsio 8 studied quality of life after stroke, which included the patient's "psychological situation." The ability to perform independent activities of daily living (ADLs)--once thought to be a big psychologic boost--did not improve psychologic health. Subjective measurement of quality of life did not improve during a 2-year period, even when independence in ADLs improved dramatically. These persons still experienced vertigo, fatigue, memory difficulty, and impair-
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ment of motor function, which limited their social and leisure activities. Similarly, Sjogren 9 interviewed hemiplegic stroke patients about leisure activities before and after stroke. Forty-one percent of these patients gave answers suggestive of stigma such as "people observe me," "I am treated differently because of my stroke," and "people discuss my disability?' Sjogren 9 concluded that not only should more research be directed toward how persons cope with stroke, but research also should emphasize how to minimize the psychosocial deprivation that is felt by manY persons who have had stroke. Stroke can have severe social consequences. Social problems listed by persons who have had a stroke include social isolation, decreased community involvement, disruption of family function, poor motivation, dependency, and loss of control. 10 In addition, social isolation initially results from physical disability, such as hemiplegia or incontinence, but the isolation continues even when these factors cease. Goldberg 10 also observed that social isolation is more severe in women and persons with higher educational achievement. Doolittle 11 focused on the progressive experience of bodily recovery of patients who have had a stroke. During the first 6 months, patients had a dramatic loss of automaticity. Simple acts, such as eating, became ordeals. Also, body integration was lost; the affected body parts were referred to as "it" instead of "my arm." Recovery was experienced in plateaus. At 7 to 12 weeks, all participating patients noted waning improvement, but at 15 to 20 weeks, the patients became daring and experimental. The most dramatic finding was referred to as "transformation by familiar surroundings. ''11 In this aspect of recovery, the patients who had done poorly in rehabilitation centers improved dramatically once they returned home. One patient who was unable to walk more than 2 steps in the rehabilitation setting walked across the room with assistance once she returned home and eventually walked independently. Research has demonstrated that patients and families may adjust to stroke through anxiety, denial, acceptance, and assimilation. 12 Many persons who have had a stroke go through a process similar to a grieving process, which includes accepting the reality of the loss, experiencing the pain of the loss, adjusting to an environment from which the lost abilities are missing, and reinvesting energy into new, feasible activities and social roles. Sandin 12 also observed that an important factor contributing to coping ability after stroke is family support. Persons who believed they could control or influence the events of their experience, were committed to the activities of their lives, and felt that family members also were committed adjusted more effectively after stroke.
REItABILITATION: CAREGIVER Table I shows long-term needs of persons who have had a stroke. These needs also impact the caregiver. In researching problems experienced by caregivers, several common areas emerge. Stress is the most common complaint of caregivers. 13 The source of stress focused on behaviors of the impaired person. The 3 behaviors by the person who has had a stroke that were most stressful to the caregiver were: irritability, depen-
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dence--which resulted in the caregiver being confined--and immature behavior. Silliman et a114 also found that behaviors were the stressors--not functional status or duration of caregiving. Rabins et a115 identified 7 behaviors that caused serious problems for family caregivers. These behaviors were: physical violence, incontinence, memory impairment, catastrophic reactions, hitting, making accusations, and suspiciousness. Stress that results from financial burden is felt by the caregiver. In 1996, stroke cost persons in the United States approximately $40.9 billion. 2 An estimated $26.2 billion accounted for direct care costs, or the dollars paid to health care providers for pharmaceuticals and for home health and other durable medical equipment. Indirect costs of stroke were estimated at $14.7 billion and were related to the loss of societal productivity by the stroke victim and family caregivers. 2 Familial support systems, payor status, and available community resources may contribute to a decrease in this source of stress for the caregiver. Stress caused by the unknown also is a problem for caregivers. Many studies have investigated the fears of the person who has had a stroke, but the literature identifying the fears of the caregiver is lacking. A study at the Medical College of Ohio Nursing SchooP 6 examined the fears of caregivers and a concept analysis of fear. The fear of the unknown, financial devastation, inability to continue home care, and further cerebral events were common. These fears in turn increased the stress felt by the caregiver. As mentioned previously, caregiving can be a demanding task, an all-consuming task that absorbs time, psychologic energy, and physical stamina. Reactions that caregivers commonly report include shock and confusion, anxiety and fear, sadness or depression, anger, guilt, grief for what the other person has lost, and perhaps what they have lost as well. Other caregivers may feel frustration and irritability; loneliness; shame for the other person's condition, how they are responding, or needing help; helplessness; and exhaustion. Spouses report a higher incidence of functional disability associated with caregiver depression. 17 To encompass the increased demands of a dependent person, caregivers would give up hobbies and relaxation activities, thus increasing the likelihood of depression. In addition, caregivers feel social isolation, loneliness, fatigue, and reduced satisfaction with quality of life. 18 Box 1 lists several ways to ease the caregiver's negative reactions. The caregiver should respect the patient and allow him or her to maintain as much control over his or her own life as he or she wishes and is able. Listening by the caregiver may
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help to ease suffering by the patient, put things in perspective, and validate his or her own importance and the importance of this episode in his or her life. Similarly, the caregiver taking care of his or her own physical needs and reserving time just for himself or herself is important. The caregiver may benefit from building a network of personal support and allowing others to help him or her. Lessons of faith, words of scripture, hymns of assurance, and teachings of nature also may help the caregiver find hope. 19 SUCCESSFUL CAREGIVERS In spite of these stressors, family caregiving is assumed to offer qualities that are not available in other settings. Some caregivers are able to do well in the role of caregiver and function very competently. Robinson a° explored the relationship between social skills, self-esteem, social support, and burden in a sample of caregivers to determine whether common characteristics of successful caregivers existed. Robinson 2° found a positive correlation between self-esteem and social support. Caregivers with higher self-esteem and more assertive personalities had more social support, Also, the caregivers who felt warm support from within their social network were found to have higher selfesteem. 20 Caregivers felt more capable and less overwhelmed with better social and family support. 21 In addition to social support, social skills were found to be important in successful caregiving. Caregivers with superior social skills were better able to enhance their social support to make an improved adjustment to their caregiving situation. Zaret 21 continued to examine the characteristics of successful caregivers and found an interesting relationship between assertiveness and the subjective burden. Less assertive caregivers are more able to "go with the flow," compromise on issues, and also give up more easily when hope for change does not exist. 21 Caregivers who are assertive may feel more stress
SEPTEMBER 1998
and tension when caregiving does not go as planned, which can be important when outcomes are uncertain and goals cannot be separated between the attainable and the unattainable. In an effort to determine success at caregiving, Baillie 22 examined caregivers who failed. The caregivers who had been involved in care for an extended period and those who had low social support were at high risk for psychologic distress or depression. Though neither of these characteristics are personal, this finding confirmed the need to examine the setting of care as well as the caregiver when looking for success. Caregivers, no matter what personality, need support and respite from care to be successful in their efforts. In addition, even when community resources and social supports are available, they may be inaccessible to the caregiver who is unable to leave a spouse at home without supervision. As time passes, social activities and contacts disappear. Eventually the couple communicate only with each other and no longer engage in activities or maintain contact with friends. 23 The caregiving situation has a strong affect on caregiving success or satisfaction, 24 Family support was positively related to coping effectiveness and reduction of burden in caregivers of Alzheimer's patients. Gilooly25 found that satisfaction with help from relatives had the highest correlation with caregiver mental health and a feeling of success with the task. Clearly, caregivers benefit from family support, and success in caregiving is enhanced by this support. Similarly, by stressing effective coping, adaptation to an altered lifestyle is promoted. In addition to individual characteristics of successful caregivers, definite coping strategies are identified by caregivers. A common coping strategy was related to the availability of information. Initial studies dealt with other disease processes, such as multiple sclerosis. Power26 examined family coping behaviors when caring for a family member with multiple sclerosis. The family should be assessed for knowledge of the illness early in the process of caregiving. Information was found to be a useful coping mechanism for family members and therefore should be given as early as possible. Caregivers cope better when they understand the disease process and have some knowledge of what to expect. 27 Several families of aphasic patients were noted to be nonfunctional in the role as caregiving or rehabilitation facilitators unless they were educated to the many and varied problems associated with aphasia and given some help in coping with these problems, z8 In contrast, Field et al29 challenged the positive relationship between information given to family members during the stroke patient's hospitalization and the ability to cope with problems associated with the return home. Relatives reported coping more effectively with the practical problems of care, but all reported that psychologic coping was not significantly aided. 29 CAREGIVER SUPPORT Family support groups contribute to the educational and psychologic needs of participants and offer a forum for the discussion of future problems and health concerns. 18 Quite often persons who have had a stroke are encouraged to join a stroke support group to aid them in adjusting to their changing lifestyle; however, evolving support groups for the caregivers of the per-
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son who has had a stroke have been increasingly popular recent-~ ly. Printz-Feddersen 30 conducted a study to examine the benefits of participation in a stroke club for the caregivers of a person who has had a stroke. The aim of the study was to determine whether a difference in perceived burden and coping abilities existed in those caregivers who participated in a stroke club and those who did not. Fifty percent of the caregivers who responded thought that the stroke club's primary service was to be a source of friendship, and this friendship better enabled them to cope with the stresses of caregiving. The provision of emotional support was the second most beneficial aspect of the club, and educational or informational benefits were considered the least important9 This finding was the opposite of the study with Alzheimer's patients, in which information and education were found to be the most helpful benefits. Printz-Feddersen3° hypothesized that the deficits associated with stroke stabilize and improve with time, whereas progressive deterioration occurs with Alzheimer's disease. The difference in the nature of the 2 disease processes may be reflected in the needs of the respective caregivers. Hence, the caregivers of persons with Alzheimer's need to receive information and education on what the future holds, which takes some fear of the unknown away and enhances coping abilities. The caregivers of persons who have had strokes cope better with more immediate support, through both friendship and emotional bonding, which helps coping abilities during the early stages of care. 30 Successful caregiving often equates to successful rehabilitation and how well the patient returns to his or her baseline state; however, most patients do not return to their previous social level. If the caregiver is supported and the needs of both the patient and the caregiver are met, then other strategies in rehabilitation will facilitate successful community reintegration. COMMUNITY R E I N T E G R A T I O N Successful reintegration into the community requires planning and depends not only on the patient's medical, functional, and psychologic status but also on the caregiver's commitment to socialization. As previously stated, contacts with family are easily maintained but interactions with friends decrease. 31 The persons who are cared for at home by a spouse socialize less than those with a caregiver from outside the home. One theory regarding this result is the possibility of the caregiver's exhaustion, which limits the opportunities for outings. In addition, bowel incontinence was found to adversely affect community participation, but lack of bladder control did not. Depression, anxiety, fear of falling, and phobias also limit reintegration. Education, social support and resource referral facilitate community re-entry) 2 Most patients and caregivers are educated through family conferences, educational manuals, and both individual and group teaching. Such interventions must begin early in the rehabilitation process to be effective; that the period between 3 and 12 months after stroke is pivotal in the development of life satisfaction is generally accepted. 33 The one true constant in successful life outcome after stroke is a rehabilitation program embraced early after stroke by both the patient and the caregiver.
The negative consequences of caregiving have prompted calls for policies and programs within several communities that can support and strengthen the caregiving capacity of the informal network34; however, few current or proposed programs that reflect public support for family caregivers have been initiated. 35
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NURSING CONCERNS Research regarding how stroke affects the patient and the caregiver reveals clear directives on what is needed. We must assure that nursing as a profession recognizes these needs. The focus of nursing interventions in the care of the rehabilitation patient is not to cure the individual, but to improve the quality of life for all persons with disabilities. 36 Rehabilitation in the past has been focused on the attainment of goals that were mutually set with the patient. Nurses were goal-oriented in their care of the patient, often feeling that if he or she could accomplish more ADLs, recovery would be accomplished. 37 However, the ability to dress or walk up stairs did not necessarily improve quality of life for the patient or caregiver. Although nurses still focus on goal-oriented care, social and psychologic aspects also are encouraged. After discharge from a rehabilitation setting with the loss of nursing care, persons who have had a stroke and their caregivers often experience social isolation and loss of control of their lives. Caregivers are forced to take on a variety of new roles and responsibilities. Table II addresses common caregiver needs. Rehabilitation professionals must assist the whole family in dealing with the effects of stroke and facilitate the resumption of roles for the patient and caregiver so that an intact family emerges from the rehabilitation process. Nursing interventions are aimed at limiting the extent of brain injury, promoting early reperfusion, and preventing complications in the acute-care setting. Nurses often are the first health care professionals to initiate discussion of outcome and rehabilitation with the families. Nurses who implement rehabilitation in the acute-care setting concentrate on the impact of disability for the person and his or her family, and help restore and maintain maximal health. 38 The caregiver is recognized as an important active team member in the rehabilitative process and should be included in all aspects of care. Family involvement plays a major role in encouraging and Supporting the patient. Finally, patient education materials can provide invaluable information to caregivers.
their families, and their caregivers need to be educated in the importance of incorporating the patient back into the family unit. The emotional and physical challenges that are faced by the patient are essential determinates of the successful rehabilitation after discharge from the acnte-care setting to home. From the literature and our experience, it appears that patients do better when discharged from the acute-care setting to home, rather than to a rehabilitation facility. However, discharging the patient to home puts an extreme burden on the caregiver, which could lead to anger and frustration directed toward the patient. In this case, any benefit derived from being at home may be lost. For this reason, the provision of adequate resources by the medical community and society is imperative to help the caregivers of chronically ill patients. Few persons would disagree that society's goals should be to: (1) reduce acute mortality associated with stroke, which can be primarily accomplished through education of the patient. Early intervention, at the onset of symptoms, can limit the sequelae of stroke. The vascular nurse can educate the patient about signs and symptoms of transient ischemic attack, which include transient monocular blindness, lateralizing weakness, and speech deficits. (2) Keep patients out of the hospital or rehabilitation facilities unless necessary. (3) Improve the functional status and quality of life of the patient. (4) Assure caregivers that their quality of life will not suffer as a result of assuming this responsibility. CONCLUSION Although the outlook for stroke survival is more hopeful than before, the need for rehabilitation remains a concern for patients and caregivers. A supportive and encouraging atmosphere by the caregiver and an understanding of the emotional and physical challenges that are faced by the person who has had a stroke are essential determinants of a successful rehabilitation after discharge from the acute-care setting to home. Involving the family in care and providing education about recovery after stroke contribute to improved quality of life for both the patients and the family.
DISCUSSION Morbidity and mortality rates associated with cerebrovascular accidents are declining because of advances in medicine and technology. As a result of this decline, a larger percentage of persons who have strokes are surviving and being discharged to either rehabilitation facilities or their homes. The late physical, emotional, and financial effects of stroke are devastating. Stroke affects every facet of family life, and in many cases requires a continuous, long-term commitment on the part of the caregiver. Most caregivers have limited resources, which results in significant changes in their style and quality of life. The current health care environment limits the period of hospitalization and time allowed at a rehabilitation facility. These limits put an everincreasing burden on the caregiver to provide a stable and supportive environment for recovery. Once recovery has reached a plateau, the caregiver needs to maintain a positive atmosphere. The health care community and society in general are well on the way to understanding that functional capacity does not translate directly into a satisfying quality of life. Stroke patients,
REFERENCES 1. Adams RD, Victor M. Cerebrovascular diseases. In: Principles of Neurology. New York: McGraw-Hill; 1993. E 669-748. 2. American Heart Association. 1997 heart and stroke statistical update. The Association; 1996. p.13-5. 3. Wojner AW. Optimizing ischemic stroke outcomes: an interdisciplinary approach to poststroke rehabilitation in acute care. Crit Care Nurs Q 1996;19:47-61. 4. Ruskin A. Understanding stroke and its rehabilitation. Stroke 1982; 17:27-32. 5. Binder LM. Emotional problems after stroke. Curt Concepts Cerebrovascular Dis 1983; 18:17-21. 6. Robinson RG, Boldac PL, Price TR. Two year longitudinal study of post-stroke mood disorders: diagnosis and outcome at one and two years. Stroke 1987;18:837-43. 7. Evans RL, Griffith J, Haselkom JK, Hendricks RD, Baldwin D, Bishop DS. Post stroke family function: an evaluation of the family's role in rehabilitation. Rehabil Nurs 1992:17; 127-31.
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8. Ahlsio B, Britton M, Murray V, Theorell T. Disablement and quality of life after stroke. Stroke 1984;15:886-90. 9. Sjogren K. Leisure after stroke. Int Rehabil Med 1988;4:80-7. 10. Goldberg G. Stroke rehabilitation. Phys Med Rehabil Clin North Am 1991;3:547-562. 11. Doolittle ND. The experience of recovery following lacunar stroke. Rehabil Nurs 1992:17;122-5. 12. Sandin KJ, Cifu DX, Noll SE. Stroke rehabilitation: psychologic and social implications. Arch Phys Med Rehabil 1994;75:52-5. 13. Williams A. What bothers caregivers of stroke givers? J Neurosci Nurs 1994;26:155-61. 14. Silliman RA, Fletcher RH, Earp JL, Wagner EH. Families of elderly stroke patients: effects of home care. J Am Med Assoc 1986;248:333-5. 15. Rabins PV, Mace NL, Lucas MJ. The impact of dementia on the family. J Am Med Assoc 1992;248:333-5. 16. Pierce LL. Fear held by caregivers of people with stroke: a concept analysis. Rehabil Nurs Research 1994;3:69-74. 17. George LK, Gwytner LE Caregiver well being: a multidimensional examination of family caregivers of demented adults. Gerontologist 1986:26;253-9. 18. Hoeman SR Coping with chronic, disabling, or developmental disorders. Rehabil Nurs. St. Louis (MO): Mosby; 1996. p. 188-224. 19. Miller JE. Twelve things to do if someone you care for is ill or incapacitated. Fort Wayne (IN): Willowgreen Publishing; 1995. p. 5-32. 20. Robinson KD. The relationship between social skills, social support, self esteem and burden in adult caregivers. J Adv Nurs 1990:15;788-95. 21. Zaret S, Reever K, Peterson-Bach J. Relatives of the impaired elderly: correlates of feelings of burden. Gerontologist 1980;20:649-55. 22. Baillie V, Norbeck JS, Barnes L. Stress, social support, and psychological stress of family caregivers of the elderly. Nurs Res 1988;37;217-22. 23. DesRosier MB, Catanzaro M, Piller J. Living with chronic illness: social support and the well spouse perspective. Rehabil Nurs 1992:17;87-90.
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24. Scott JR Roberto KA, Hutton JT. Families of Alzheimer's victims: family support to the caregivers. J Am Geriatr Soc 1986;34:851-8. 25. Gilooly MLM. The impact of care-giving on caregivers: factors associated with the psychological well being of people supporting a demented relative in the community. Br J Med Psychol 1984:57;35-44. 26. Power PW. Family coping behaviors in chronic illness: a rehabilitative perspective. Rehabil Lit 1985;46:78-82. 27. Strand T, Asplund K, Eriksson S, Hagg E, Lithner F, Western PO. A non-intensive stroke unit reduces functional disability and the need for long-term hospitalization. Stroke 1985;16:29-34. 28. Malone R. Express attitudes of aphasics. J Speech Hearing Disord 1969;34:146-51. 29. Field D, Cordle CJ, Bowman GS. Coping with stroke at home. Int Rehabil Med 1981:5;96-100. 30. Printz-Feddersen V. Group process effect on caregiver burden. J Neurosci Nurs 1990;22:164-8. 31. Evans RL, Bishop DS, Haselkorn JK. Factors predicting satisfactory home care after stroke. Arch Phys Med Rehabil 1991:72;144-7. 32. Friedland JR McColl MA. Social support intervention after stroke: results of a randomized trial. Arch Phys Med Rehabil 1991:73;573-81. 33. Robinson RG, Price TR. Post-stroke depressive disorders: a follow-up study of 103 patients. Stroke 1982;13:635-41. 34. Montcalm DM. Caregivers: resources and services. In: Harel Z, Dunkle RE, editors. Matching people and services in long-term care. New York: Springer; 1995. p. 159-79. 35. Hooyman NR, Kiyak HA. Health and long-term care policy and programs. In: Social gerontology: a multidisciplinary perspective. 4th ed. Boston: Allyn & Bacon; 1996. 36. McCollom R Quality of life versus cost of life. Rehabil Nurs 1998;22:547-62. 37. Adkins EH. Quality of life after stroke: exposing a gap in nursing literature. Rehabil Nurs 1993;18:144-7. 38. Fowler S, Durkee CM, Webb DJ. Rehabilitating stroke patients in the acute care setting. Medsurg Nnrs 1996:5;327 32.
CALL FOR MANUSCRIPTS
Journal of Vascular Nursing welcomes manuscripts that provide nurses and other health care professionals with information to foster expert clinical practice in vascular nursing. Please submit manuscripts to either Victora A. Fahey, RN, MSN, CVN, or to Janice D. Nunnelee, RN, MSN, CS, CVN, at one of the following addresses: Victora A. Fahey, RN, MSN, CVN, Janice D. Nunnelee, RN, MSN, CS, CVN, 1550 Lake Shore Dr., No. 4A West County Family Practices Chicago, IL 60610 14377 Woodlake #300 Chesterfield, MO 63017 For details about the Journal's editorial policy and manuscript preparation, see the Information for Authors pages in the front of this issue.
JOURNAL OF VASCULAR NURSING
SEPTEMBER 1998
The stroke patient and assessment of caregiver needs Mary K. Dorsey, RN, MSN, CVN, and Kathy J. Vaca, RN, BSN, CCRN
Currently, morbidity and mortality rates after stroke are declining as a result of advances in medical care and technology. Despite this decline, the physical, emotional, and psychologic effects of stroke remain devastating. Continuous requirements and long-term commitment with limited resources are a reality for many caregivers. Common problems include role changes, stress, social isolation, and financial burden. A supportive and encouraging atmosphere by the caregiver and an understanding of the emotional and physical challenges that are faced by the person who has had a stroke are essential determinants of a successful rehabilitation. (J Vasc Nurs 1998;16:62-7.) Stroke, or cerebrovascular accident, is defined as the sudden or acute focal neurologic deficit, nonconvulsive in nature, that results from a pathologic process involving cerebral blood vessels. 1 Stroke affects approximately 500,000 persons in the United States each year and is the third leading cause of death in the United States. 2 In addition, stroke accounts for half of all patients hospitalized for acute neurologic disease and is the leading cause of serious, long-term disability in the United States. 2 Approximately 10% to 30% of all persons who have a stroke will require institutional care after discharge from an acute-care setting) The remaining two thirds of persons who have had a stroke return to a home setting with family caregivers (Figure 1). Whether placement should be in a rehabilitation facility or the home often is determined by personal decision or dictated by health care benefits. Few guidelines, if any, are available to aid in discharge planning. Family members may be unprepared for the amount of care required by their loved one after stroke; they often are emotional and overanxious to return the patient to the home setting before adequate teaching is completed. Researching the effect of stroke on the caregiver as well as the patient may be helpful in providing guidelines for the care of persons who are not placed in rehabilitation facilities. REHABILITATION: SURVIVOR Initially, the nurse, as well as the significant others, should understand the effects of stroke on the patient's physical, emotional, and psychosocial well-being. When damage occurs in any
OUTCOME OF STROKE PATIENTS INSTITUTIONALIZED 16%
DEATH 16%
HOME 68%
Figure 1. Outcome of stroke patients. (Courtesy of Saint Louis University Health Sciences Center, St Louis, 3/lo).
portion of the brain, not only are the primary functions of that region of the brain disturbed, but also the entire brain suffers from the loss of communication with the injured portion. In addition, the remaining normal portions of the brain are deprived of input from the damaged area and therefore are subject to abnormal messages and misinformation generated as a result of the lesion. 4 This perspective means that a lesion affecting the left hemisphere of the brain not only causes deficits in the right side of the body but also indirectly affects the whole brain and therefore the whole body. Persons who have had stroke frequently have mood disturbances. Anxiety, frustration, and despair occur in reaction to the physical, cognitive, and psychosocial changes that result from stroke. 5 One year after having a stroke, one third of patients are clinically depressed; 2 years after having a stroke, 40% of patients meet the criteria of major depression. 6 Early identification of depression can determine the potential success of the rehabilitation effort. At the same time, the caregiving family may feel individual or family anxiety, coalesce about the identified person, or become dysfunctional as a result of disrupted patterns of roles, communications, or operations. 7 The psychologic effects of stroke are more subtle than are the physical and emotional effects. Ahlsio 8 studied quality of life after stroke, which included the patient's "psychological situation." The ability to perform independent activities of daily living (ADLs)--once thought to be a big psychologic boost--did not improve psychologic health. Subjective measurement of quality of life did not improve during a 2-year period, even when independence in ADLs improved dramatically. These persons still experienced vertigo, fatigue, memory difficulty, and impair-
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ment of motor function, which limited their social and leisure activities. Similarly, Sjogren 9 interviewed hemiplegic stroke patients about leisure activities before and after stroke. Forty-one percent of these patients gave answers suggestive of stigma such as "people observe me," "I am treated differently because of my stroke," and "people discuss my disability?' Sjogren 9 concluded that not only should more research be directed toward how persons cope with stroke, but research also should emphasize how to minimize the psychosocial deprivation that is felt by manY persons who have had stroke. Stroke can have severe social consequences. Social problems listed by persons who have had a stroke include social isolation, decreased community involvement, disruption of family function, poor motivation, dependency, and loss of control. 10 In addition, social isolation initially results from physical disability, such as hemiplegia or incontinence, but the isolation continues even when these factors cease. Goldberg 10 also observed that social isolation is more severe in women and persons with higher educational achievement. Doolittle 11 focused on the progressive experience of bodily recovery of patients who have had a stroke. During the first 6 months, patients had a dramatic loss of automaticity. Simple acts, such as eating, became ordeals. Also, body integration was lost; the affected body parts were referred to as "it" instead of "my arm." Recovery was experienced in plateaus. At 7 to 12 weeks, all participating patients noted waning improvement, but at 15 to 20 weeks, the patients became daring and experimental. The most dramatic finding was referred to as "transformation by familiar surroundings. ''11 In this aspect of recovery, the patients who had done poorly in rehabilitation centers improved dramatically once they returned home. One patient who was unable to walk more than 2 steps in the rehabilitation setting walked across the room with assistance once she returned home and eventually walked independently. Research has demonstrated that patients and families may adjust to stroke through anxiety, denial, acceptance, and assimilation. 12 Many persons who have had a stroke go through a process similar to a grieving process, which includes accepting the reality of the loss, experiencing the pain of the loss, adjusting to an environment from which the lost abilities are missing, and reinvesting energy into new, feasible activities and social roles. Sandin 12 also observed that an important factor contributing to coping ability after stroke is family support. Persons who believed they could control or influence the events of their experience, were committed to the activities of their lives, and felt that family members also were committed adjusted more effectively after stroke.
REItABILITATION: CAREGIVER Table I shows long-term needs of persons who have had a stroke. These needs also impact the caregiver. In researching problems experienced by caregivers, several common areas emerge. Stress is the most common complaint of caregivers. 13 The source of stress focused on behaviors of the impaired person. The 3 behaviors by the person who has had a stroke that were most stressful to the caregiver were: irritability, depen-
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dence--which resulted in the caregiver being confined--and immature behavior. Silliman et a114 also found that behaviors were the stressors--not functional status or duration of caregiving. Rabins et a115 identified 7 behaviors that caused serious problems for family caregivers. These behaviors were: physical violence, incontinence, memory impairment, catastrophic reactions, hitting, making accusations, and suspiciousness. Stress that results from financial burden is felt by the caregiver. In 1996, stroke cost persons in the United States approximately $40.9 billion. 2 An estimated $26.2 billion accounted for direct care costs, or the dollars paid to health care providers for pharmaceuticals and for home health and other durable medical equipment. Indirect costs of stroke were estimated at $14.7 billion and were related to the loss of societal productivity by the stroke victim and family caregivers. 2 Familial support systems, payor status, and available community resources may contribute to a decrease in this source of stress for the caregiver. Stress caused by the unknown also is a problem for caregivers. Many studies have investigated the fears of the person who has had a stroke, but the literature identifying the fears of the caregiver is lacking. A study at the Medical College of Ohio Nursing SchooP 6 examined the fears of caregivers and a concept analysis of fear. The fear of the unknown, financial devastation, inability to continue home care, and further cerebral events were common. These fears in turn increased the stress felt by the caregiver. As mentioned previously, caregiving can be a demanding task, an all-consuming task that absorbs time, psychologic energy, and physical stamina. Reactions that caregivers commonly report include shock and confusion, anxiety and fear, sadness or depression, anger, guilt, grief for what the other person has lost, and perhaps what they have lost as well. Other caregivers may feel frustration and irritability; loneliness; shame for the other person's condition, how they are responding, or needing help; helplessness; and exhaustion. Spouses report a higher incidence of functional disability associated with caregiver depression. 17 To encompass the increased demands of a dependent person, caregivers would give up hobbies and relaxation activities, thus increasing the likelihood of depression. In addition, caregivers feel social isolation, loneliness, fatigue, and reduced satisfaction with quality of life. 18 Box 1 lists several ways to ease the caregiver's negative reactions. The caregiver should respect the patient and allow him or her to maintain as much control over his or her own life as he or she wishes and is able. Listening by the caregiver may
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help to ease suffering by the patient, put things in perspective, and validate his or her own importance and the importance of this episode in his or her life. Similarly, the caregiver taking care of his or her own physical needs and reserving time just for himself or herself is important. The caregiver may benefit from building a network of personal support and allowing others to help him or her. Lessons of faith, words of scripture, hymns of assurance, and teachings of nature also may help the caregiver find hope. 19 SUCCESSFUL CAREGIVERS In spite of these stressors, family caregiving is assumed to offer qualities that are not available in other settings. Some caregivers are able to do well in the role of caregiver and function very competently. Robinson a° explored the relationship between social skills, self-esteem, social support, and burden in a sample of caregivers to determine whether common characteristics of successful caregivers existed. Robinson 2° found a positive correlation between self-esteem and social support. Caregivers with higher self-esteem and more assertive personalities had more social support, Also, the caregivers who felt warm support from within their social network were found to have higher selfesteem. 20 Caregivers felt more capable and less overwhelmed with better social and family support. 21 In addition to social support, social skills were found to be important in successful caregiving. Caregivers with superior social skills were better able to enhance their social support to make an improved adjustment to their caregiving situation. Zaret 21 continued to examine the characteristics of successful caregivers and found an interesting relationship between assertiveness and the subjective burden. Less assertive caregivers are more able to "go with the flow," compromise on issues, and also give up more easily when hope for change does not exist. 21 Caregivers who are assertive may feel more stress
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and tension when caregiving does not go as planned, which can be important when outcomes are uncertain and goals cannot be separated between the attainable and the unattainable. In an effort to determine success at caregiving, Baillie 22 examined caregivers who failed. The caregivers who had been involved in care for an extended period and those who had low social support were at high risk for psychologic distress or depression. Though neither of these characteristics are personal, this finding confirmed the need to examine the setting of care as well as the caregiver when looking for success. Caregivers, no matter what personality, need support and respite from care to be successful in their efforts. In addition, even when community resources and social supports are available, they may be inaccessible to the caregiver who is unable to leave a spouse at home without supervision. As time passes, social activities and contacts disappear. Eventually the couple communicate only with each other and no longer engage in activities or maintain contact with friends. 23 The caregiving situation has a strong affect on caregiving success or satisfaction, 24 Family support was positively related to coping effectiveness and reduction of burden in caregivers of Alzheimer's patients. Gilooly25 found that satisfaction with help from relatives had the highest correlation with caregiver mental health and a feeling of success with the task. Clearly, caregivers benefit from family support, and success in caregiving is enhanced by this support. Similarly, by stressing effective coping, adaptation to an altered lifestyle is promoted. In addition to individual characteristics of successful caregivers, definite coping strategies are identified by caregivers. A common coping strategy was related to the availability of information. Initial studies dealt with other disease processes, such as multiple sclerosis. Power26 examined family coping behaviors when caring for a family member with multiple sclerosis. The family should be assessed for knowledge of the illness early in the process of caregiving. Information was found to be a useful coping mechanism for family members and therefore should be given as early as possible. Caregivers cope better when they understand the disease process and have some knowledge of what to expect. 27 Several families of aphasic patients were noted to be nonfunctional in the role as caregiving or rehabilitation facilitators unless they were educated to the many and varied problems associated with aphasia and given some help in coping with these problems, z8 In contrast, Field et al29 challenged the positive relationship between information given to family members during the stroke patient's hospitalization and the ability to cope with problems associated with the return home. Relatives reported coping more effectively with the practical problems of care, but all reported that psychologic coping was not significantly aided. 29 CAREGIVER SUPPORT Family support groups contribute to the educational and psychologic needs of participants and offer a forum for the discussion of future problems and health concerns. 18 Quite often persons who have had a stroke are encouraged to join a stroke support group to aid them in adjusting to their changing lifestyle; however, evolving support groups for the caregivers of the per-
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son who has had a stroke have been increasingly popular recent-~ ly. Printz-Feddersen 30 conducted a study to examine the benefits of participation in a stroke club for the caregivers of a person who has had a stroke. The aim of the study was to determine whether a difference in perceived burden and coping abilities existed in those caregivers who participated in a stroke club and those who did not. Fifty percent of the caregivers who responded thought that the stroke club's primary service was to be a source of friendship, and this friendship better enabled them to cope with the stresses of caregiving. The provision of emotional support was the second most beneficial aspect of the club, and educational or informational benefits were considered the least important9 This finding was the opposite of the study with Alzheimer's patients, in which information and education were found to be the most helpful benefits. Printz-Feddersen3° hypothesized that the deficits associated with stroke stabilize and improve with time, whereas progressive deterioration occurs with Alzheimer's disease. The difference in the nature of the 2 disease processes may be reflected in the needs of the respective caregivers. Hence, the caregivers of persons with Alzheimer's need to receive information and education on what the future holds, which takes some fear of the unknown away and enhances coping abilities. The caregivers of persons who have had strokes cope better with more immediate support, through both friendship and emotional bonding, which helps coping abilities during the early stages of care. 30 Successful caregiving often equates to successful rehabilitation and how well the patient returns to his or her baseline state; however, most patients do not return to their previous social level. If the caregiver is supported and the needs of both the patient and the caregiver are met, then other strategies in rehabilitation will facilitate successful community reintegration. COMMUNITY R E I N T E G R A T I O N Successful reintegration into the community requires planning and depends not only on the patient's medical, functional, and psychologic status but also on the caregiver's commitment to socialization. As previously stated, contacts with family are easily maintained but interactions with friends decrease. 31 The persons who are cared for at home by a spouse socialize less than those with a caregiver from outside the home. One theory regarding this result is the possibility of the caregiver's exhaustion, which limits the opportunities for outings. In addition, bowel incontinence was found to adversely affect community participation, but lack of bladder control did not. Depression, anxiety, fear of falling, and phobias also limit reintegration. Education, social support and resource referral facilitate community re-entry) 2 Most patients and caregivers are educated through family conferences, educational manuals, and both individual and group teaching. Such interventions must begin early in the rehabilitation process to be effective; that the period between 3 and 12 months after stroke is pivotal in the development of life satisfaction is generally accepted. 33 The one true constant in successful life outcome after stroke is a rehabilitation program embraced early after stroke by both the patient and the caregiver.
The negative consequences of caregiving have prompted calls for policies and programs within several communities that can support and strengthen the caregiving capacity of the informal network34; however, few current or proposed programs that reflect public support for family caregivers have been initiated. 35
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NURSING CONCERNS Research regarding how stroke affects the patient and the caregiver reveals clear directives on what is needed. We must assure that nursing as a profession recognizes these needs. The focus of nursing interventions in the care of the rehabilitation patient is not to cure the individual, but to improve the quality of life for all persons with disabilities. 36 Rehabilitation in the past has been focused on the attainment of goals that were mutually set with the patient. Nurses were goal-oriented in their care of the patient, often feeling that if he or she could accomplish more ADLs, recovery would be accomplished. 37 However, the ability to dress or walk up stairs did not necessarily improve quality of life for the patient or caregiver. Although nurses still focus on goal-oriented care, social and psychologic aspects also are encouraged. After discharge from a rehabilitation setting with the loss of nursing care, persons who have had a stroke and their caregivers often experience social isolation and loss of control of their lives. Caregivers are forced to take on a variety of new roles and responsibilities. Table II addresses common caregiver needs. Rehabilitation professionals must assist the whole family in dealing with the effects of stroke and facilitate the resumption of roles for the patient and caregiver so that an intact family emerges from the rehabilitation process. Nursing interventions are aimed at limiting the extent of brain injury, promoting early reperfusion, and preventing complications in the acute-care setting. Nurses often are the first health care professionals to initiate discussion of outcome and rehabilitation with the families. Nurses who implement rehabilitation in the acute-care setting concentrate on the impact of disability for the person and his or her family, and help restore and maintain maximal health. 38 The caregiver is recognized as an important active team member in the rehabilitative process and should be included in all aspects of care. Family involvement plays a major role in encouraging and Supporting the patient. Finally, patient education materials can provide invaluable information to caregivers.
their families, and their caregivers need to be educated in the importance of incorporating the patient back into the family unit. The emotional and physical challenges that are faced by the patient are essential determinates of the successful rehabilitation after discharge from the acnte-care setting to home. From the literature and our experience, it appears that patients do better when discharged from the acute-care setting to home, rather than to a rehabilitation facility. However, discharging the patient to home puts an extreme burden on the caregiver, which could lead to anger and frustration directed toward the patient. In this case, any benefit derived from being at home may be lost. For this reason, the provision of adequate resources by the medical community and society is imperative to help the caregivers of chronically ill patients. Few persons would disagree that society's goals should be to: (1) reduce acute mortality associated with stroke, which can be primarily accomplished through education of the patient. Early intervention, at the onset of symptoms, can limit the sequelae of stroke. The vascular nurse can educate the patient about signs and symptoms of transient ischemic attack, which include transient monocular blindness, lateralizing weakness, and speech deficits. (2) Keep patients out of the hospital or rehabilitation facilities unless necessary. (3) Improve the functional status and quality of life of the patient. (4) Assure caregivers that their quality of life will not suffer as a result of assuming this responsibility. CONCLUSION Although the outlook for stroke survival is more hopeful than before, the need for rehabilitation remains a concern for patients and caregivers. A supportive and encouraging atmosphere by the caregiver and an understanding of the emotional and physical challenges that are faced by the person who has had a stroke are essential determinants of a successful rehabilitation after discharge from the acute-care setting to home. Involving the family in care and providing education about recovery after stroke contribute to improved quality of life for both the patients and the family.
DISCUSSION Morbidity and mortality rates associated with cerebrovascular accidents are declining because of advances in medicine and technology. As a result of this decline, a larger percentage of persons who have strokes are surviving and being discharged to either rehabilitation facilities or their homes. The late physical, emotional, and financial effects of stroke are devastating. Stroke affects every facet of family life, and in many cases requires a continuous, long-term commitment on the part of the caregiver. Most caregivers have limited resources, which results in significant changes in their style and quality of life. The current health care environment limits the period of hospitalization and time allowed at a rehabilitation facility. These limits put an everincreasing burden on the caregiver to provide a stable and supportive environment for recovery. Once recovery has reached a plateau, the caregiver needs to maintain a positive atmosphere. The health care community and society in general are well on the way to understanding that functional capacity does not translate directly into a satisfying quality of life. Stroke patients,
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CALL FOR MANUSCRIPTS
Journal of Vascular Nursing welcomes manuscripts that provide nurses and other health care professionals with information to foster expert clinical practice in vascular nursing. Please submit manuscripts to either Victora A. Fahey, RN, MSN, CVN, or to Janice D. Nunnelee, RN, MSN, CS, CVN, at one of the following addresses: Victora A. Fahey, RN, MSN, CVN, Janice D. Nunnelee, RN, MSN, CS, CVN, 1550 Lake Shore Dr., No. 4A West County Family Practices Chicago, IL 60610 14377 Woodlake #300 Chesterfield, MO 63017 For details about the Journal's editorial policy and manuscript preparation, see the Information for Authors pages in the front of this issue.