I
Frarnework
I
in chronic illness by Mary G.MacVicar and Pat Archbold
I
--
problem confronting the health-care system today is the effect of long-term illness on the family. Patients’ families must organize many activities around the exigencies of the stabilized or slowly progressing pathologies to maintain the necessary balance between family and individual needs. The extent to which the family can function as a unit will effect its capability in health matters. (Freeman, 1970) Studies of family crisis have produced evidence that there are essentially objective situational factors that can be related to different family response patterns. Those factors affecting family adjustment to crisis events as suggested within the Hill and Hansen (1964) framework of family stress and the implications for nursing intervention constitute the major focus of this discussion.
A
180
MAJOR
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NO. 2
1976
Examining the process by which families define an event as a crisis, Hill and Hansen (p. 803) identified four interrelated, but conceptually distinct, factors which influence the family’s ability to cope with the illness experience. These are : 1. Characteristics of the Event a. Nature of the pathology and system effected b. Type of disability c. Prognosis d. Potential for rehabilitation e. Family’s perception of the illness 2. Perceived Threat to Family Relationships, Status, and Goals a. Past family roles, relations, and communication patterns b. The change in the above roles, relations, and patterns secondary to the illness (both real and perceived) c. Decision-making patterns before and after the illness d. Individual and family ‘life goals,’ and changes in life goals secondary to the illness e. Feelings on the part of individual family members about the changes in relationships, status, and goals 3. Resources Available to the Family a. Demographic data: household composition, age, sex, educational background, ethnicity, religion, occupation, income, marital status, housing status, transportation available, insurance policies b. Persons: family members, friends, and community groups available to the client and family
4. Past Experience with the Same or Similar Situation a. Past crisis experienced by the family b. Decision-making patterns employed during the crisis c. Individuals identified by the family as ones who can be ‘counted on’ in time of crisis
NURSING FORUM
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This analytic framework provides a basic rationale for both family assessment and for determining the individual patient’s concerns, many of which are generated within the family structure. Following a brief discussion of the family system, we will examine these four dimensions separately to assess the independent influence each exerts on the family. We will also present a case study to illustrate the relevance of this approach for nursing assessment and intervention. THEFAMILY SYSTEM The family is conceived here as a partially open system, characterized internally by paired positions, such as husbandfather, wife-mother, daughter-sister. There are, of course, greater variations of these positions as the family definition is expanded within a multigenerational context or the extended kinship unit. For each position there are role prescriptions which specify appropriate behaviors and regulate the relationships of family members in daily living and over time. (Hill, 1968) When illness strikes, the role occupants do not abdicate their positions. That is, the mother remains a mother and wife but is unable to fulfill the obligations of either role. Depending on the severity and length of illness, role impairment or complete role disruption may become permanent. Family process and the general status of the family in society are intricately related to the successful enactment of multiple roles. Participation in the larger community occurs through occupational and educational roles, among others, and by membership in various civic and religious groups. Illness is disruptive to the network of relationships which constitute the family system and to those which link the family to the community insofar as the specific role obliga-
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tions can or cannot be met. Viewed from the broader social system perspective, the family is vulnerable particularly to such events as illness and unemployment because of its relatively isolated and dependent position within the social structure. Despite the maintenance of intergenerational and close kin relationships, the responsibilities assigned to the conjugal family by society are great. The family must orient and socialize its young, meet the major emotional needs of its members, and be the ". . . bottleneck through which all troubles pass. . . ." (Hill, p. 441) Each member and every relationship within the family are essential to the stability achieved by the unit and to each of the participants as a personality. (Parson, Fox, 1968, p. 382) Illness, then, is much more than an individual concern. The impairment of any family role will require alteration of reciprocal roles. Such reorganization, although potentially stressful to individual family members, is essential to achieve a new equilibrium for the family organization. The process of reorganization involves all family members and can dramatically affect the patient and the outcome of his illness. (Olsen, 1970) The vulnerability of the family unit to a crisis event such as illness is related to the ability of the family members to modify their rcspective roles, perform tasks essential for the continuity of family life, and redefine personal expectations and goals. To understand more fully the process by which families respond to the crisis and illness, it is necessary to cxamine thc charactcristies of thc pathology, how the family perceives the illness event in terms of family relationships and goals, the resources available to the family, and reorganizational patterns in any previous crisis experience.
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183
CHARACTERISTICS OF THE
EVENT
The criteria suggested by Nagi (1969) for the assessment of illness conditions is particularly relevant because it provides a circumscribed approach to a fairly complex issue, and is applicable to a variety of pathologic states. The point in the life cycle at which illness occurs. The type of onset - either gradual or very sudden, allowing no warning. The degree of pain, trauma, and threat to life. The nature and degree of limitations imposed upon the individual's capacity and level of functioning. The degree of visibility, disfigurement, or associated stigma. The type of treatment and care required and received. The state of underlying pathology - either eliminated or arrested; slowly or rapidly progressive. Prognosis and potential for restorative training. Utilizing the criteria outlined above, we can examine the significance of the illness for the entire family from three basic perspectives : the pathophysiologic state; the patient's knowledge and perception of his condition, including real or anticipated residual limitations; and the knowledge, perception, and response of significant others to his affliction. Recognition of the variation in perceptions of illness behavior may have a twofold benefit: a decrease in the tendency to stereotype patients and increased insight into the kind of information patients and their families need to cope with the illness condition. By understanding what an illness means to family members, the nurse will gain greater insight into how the illness may disrupt the network of family. relationships and roles.
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1976
PERCEIVED THREAT TO FAMILY RELATIONSHIPS, A N D GOALS STATUS, Closely related to the characteristics of the illness is the perceived threat to family structure and process. This involves two basic issues - which role is vacated and what adjustments are made in reciprocal roles. In their studies of patient-family relationships, Duff and Hollingshead ( 1968) demonstrated that if the patient were the major source of income, problems tended to be defined as financial ones; whereas, if the wife-mother role were vacated, concerns reflected domestic and child-care tasks. Eventually, those functions essential to the survival of the family group must be performed. When the individual enters the sick role, other family members must take on the tasks and obligations the afflicted can no longer meet. For example, if the wife is the afflicted member, the husband must take on domestic and child-care tasks in addition to his occupational role. In minor, and in some instances acute illness, without accompanying residual impairments, role modifications are of short duration with expectations for a return to normal. However, difficulties can arise when the patient or other family members, or both, derive personal satisfaction from the new role structure and relationships. For example, the wife may not want to relinquish the status and authority invested in her as a result of her husband’s illness. Or the husband may find respite from the “. . . Distinctive rigors of the marketplace . . .” so long as he maintains a legitimate sick role status. (Parson, Fox, p. 380) Conversely, the wife may have extreme difficulty in the management of family affairs, thereby adding to the stress of the husband’s illness. On the other hand, the illness of a family member may require that the wife relinquish a per-
N U R S I N G FORUM
185
sonally rewarding occupational position outside the home to care for the stricken member. In childhood illness, both parents may be faced with the necessity of expanding their roles in several directions to meet the needs of the sick child. Additionally, the prolonged demands imposed by chronic illness on other family members can contribute to the development of multiple health problems within the family, further eroding the system’s coping ability. If health-care personnel are aware that both patient and family are in the process of reorganizing and redefining their relationships, they may temper their responses to apparently bizzare patient-family interactions. Although the patient may be isolated in a hospital, clinic, or welfare agency, he or she remains a family member with a specific position relative to others in the family group. The tasks and expectations associated with the role have been modified or eliminated, which means that new behaviors must be explored as the roles are redefined. TO THE FAMILY RESOURCES AVAILABLE
Health occupies a distinct position within the family’s value system and frequently is evaluated on the basis of competing needs. (Koos, 1954) Mobilizing resources in response to an illness episode often requires the resolution of a variety of demands. How the family copes with illness depends on both the quantitative and qualitative character of its resources. Clearly, family units that have adequate financial reserves or are eligible for assistance do not have the same issues confronting them as families that are not in either category. There is strong evidence that economic marginality tends to increase family vulnerability to crisis events. (Hill, p. 449) That is, when family expenditures equal or exceed their income, the
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unexpected costs of illness can jeopardize the family’s precarious financial balance. When the breadwinner is incapacitated, there is the additional burden of loss of income. In these circumstances, families must alter their lifestyles, which may mean a lower standard of living. (Addiss, 1966) Family concerns are not restricted to the financial domain, however. The number of persons available to provide assistance also is an indicator of potential hardship imposed by illness. An industrial society has helped to develop a transient family with considerably looser kinship ties than in the past. Historically, the family unit tended to include other relatives such as aunts, cousins, or grandparents. Today, the trend is toward the mobile, smaller, nuclear unit consisting of parents and their children. However, within the kinship system there is an exchange of aid and services particularly during crisis periods. (Sussman, Burchinal, 1968) But because the achievement of goals and values of intra-family groups must compete with the needs of the crisis-stricken family, such assistance is neither stable nor permanent. (Sussman, 1973)
PASTEXPERIENCE WITH CRISIS SITUATIONS When confronted by a number of unknown factors inherent in an illness episode, past experience as well as future expectations will be strong determinants in the family decisionmaking process. It is assumed here that previous experience with hardship has a bearing on current decision-making process. Basically, if past learning experiences have been positive, the family may be more innovative in exploring alternatives when faced with a new crisis situation. On the other hand, if previous experience with crisis resolution has been punitive in nature, it may well have a deleterious effect on current decision-making processes.
NURSING FORUM
187
Effective nursing intervention requires an understanding of how a family has coped with previous crisis events. For example, what were the general characteristics of the family decision-making process? Was this a collaborative effort, or did one member exercise greater authority over the family group? Was there a family member identified as the primary cause of the trouble; and if so, how do others relate to this individual? Knowledge of a family’s response to previous crisis can provide us with insight into basic patterns of coping behavior already within the family’s repertoire. However, because the initiating cause of crisis may vary it is difficult to predict how a family will react to future crisis events. Moreover, family resources, such as income and available kinship assistance, may vary over time. There is some evidence indicating that well-integrated families tend to endure the hardships imposed by a crisis better than families that are not as well integrated. (Hill, Hansen, p. 11) That is, those families in which individual members shared similar goals and common values, in times of stress were less vulnerable to the disruptive impact of the intrusive force. However, it should be recognized that when faced with multiple problems such as illness and reduced income, the family’s ability to recover is diminished.
ASSESSMENT NURSING The value of a nursing assessment is apparent when one recognizes the unique variations among individuals, families, and communities. In the past, a great deal of emphasis has been placed on the nursing assessment of the individual. However, we are suggesting that, by analyzing the characteristics of the illness in light of the criteria suggested by Nagi,
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we gain insight into the impact of the illness on both the individual and his family. As the requirements of chronic illness and periodic institutionalization become incorporated into the daily life patterns of the family, new behaviors and expectations emerge, are modified, and become more or less routine. Nursing transactions must reflect knowledge of these dynamics. Because of the relatively prolonged contact with the family (either in an institution or in the home) the nurse often is the first person to detect family turbulence.
CASEHISTORY Mr. H is a 47-year-old former heavy equipment operator who had been hospitalized for the treatment of a coronary occlusion. He was forced to retire from his employment because of the illness. His family. consisted of his wife, also 47, and twelve children, five of whom still lived at home. Income for the family was provided by Mrs. H’s earnings. The costs of initial medical care and hospitalization were covered partially by the insurance provided by Mr. H’s employer. Mr. H’s 15-year-old daughter was referred to the nurse because she was pregnant. While the above states the basic facts related to Mr. H’s illness and his family, it does not reveal the impact of the events on the individual family members. Using the Hill and Hansen framework for family assessment in chronic illness one arrives at a more complete picture. Characteristics of the Event: - During his economically productive middle years, Mr. H had an acute onset of an essentially degenerative disease of the cardiovascular system. He received extensive medical and surgical treatment for a
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coronary occlusion, believing that the therapy would “cure” the illness. However, cardiac impairment was extensive and necessitated his retirement, which eroded his confidence in health-care practitioners. Mr. H’s potential for further employment was poor without the benefit of vocational rehabilitation. The lack of visible signs of illness compounded the dilemma for Mr. H and his family, since they had to explain his inactivity to others. Perceived Threat to Family Relationships, Status, and Goals: - Because Mr. H had provided the only source of income for the family, his illness had a great impact on its financial resources. The family members had internalized the values of hard work and independence and, therefore, were unwilling to consider federal assistance programs. Consequently the wife assumed the role of family provider by accepting employment during the evenings as an aide in a nursing home, while maintaining her role as homemaker. Her major goal was to provide enough money to ensure the survival of the family unit. As a result of this commitment, she refused to seek treatment for her elevated blood pressure because she feared additional medical expenses and the possibility of being told she could not continue working. Prior to Mr. H’s illness, as education was valued by the parents as a method for improving lifestyle, they had intended to support their children as much as possible in their education. The decreased family income and the remaining bills for medical treatment prevented them from attaining this goal. Available Resources: - Although the family had a modest savings, built up prior to Mr. H’s illness, this was used up rapidly in supplementing the income and in paying continuing
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medical bills. The income from Mrs. H’s evening employment became the only financial resource available to the family. Other resources were just as scarce. The seven older children lived away from home and were occupied by their own families and occupations. Of the seven, all but one lived in other cities and maintained contact with the parents by mail or telephone, but could not give physical or economic support. The daughter living near the parents had three young children and was not i n a position to offer her parents assistance. The five children living at home were more problems than resources to the parents. In fact, it was the pregnancy of the 15-year-old daughter that thrust the family into another crisis. Community resources for the family also were limited. Additionally, some of the aid which might have proved useful such as Aid to the Disabled was unacceptable to the family because it was perceived as welfare. But, after the change-over of the adult categories to Social Security, they accepted the grant. One critical issue was that of employment for Mr. H. His physician indicated that he could not return to work as a heavy equipment operator and recommended that he work at a desk job. However, with his sixth grade education, Mr. H would require vocational rehabilitation to qualify for such a position. He was refused help by the vocational programs in the area because of his age and lack of formal education. Since much of his self-respect was based on his ability to provide for his family, Mr. H suffered personally as well as economically from the lack of work. Past Experience with the Same or Similar Situation: The family had experienced several similar situations at dif-
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ferent periods in its development. These included two miscarriages early in the marriage, and what the wife described as an “emotional crisis” requiring institutionalization for one of the older children. In all three crises the wife had assumed the dominant role from both a supportive and instrumental basis. NURSING INTERVENTION This family assessment was done by a community health nurse to whom the family was referred as a result of the daughter’s pregnancy. On the basis of the assessment data, the nurse was able to enlarge the scope of her intervention from the pregnancy of the 15-year-old daughter to the entire family. Time was spent with family members discussing their perceptions of the changes that had occurred as a consequence of the father’s illness and clearing misconceptions regarding the illness and its social sequelae. One result of the discussions was that the family began to see Social Security benefits as something for which they had worked rather than as charity, and were able to accept the grant. Additionally, the nurse began to investigate alternative ways of providing vocational rehabilitation for Mr. H. At the time this article was being prepared it appeared likely that Mr. H would be offered a clerical position at a neighborhood health center near his home. Because of her position as wage earner and her dominant role in time of family crisis, Mrs. H’s health became a focus for the nurse. As a result of their interactions, Mrs. H sought treatment for hypertension. Her elevated blood pressure was successfully controlled with anti-hypertensive drugs. All the family members were assessed for health status, and care was given as needed throughout the nurse’s contact with the group.
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SUMMARY Family assessment can enable the nurse to expand the internal and external resource potential of the family unit. Specifically, the nurse may be able to determine what information the client and family need to cope effectively with the illness condition. Additionally, the nurse may supply the family with consumer information regarding qualifications, cost, and appropriate points of entry for additional health and welfare services, and intervene as client advocate by documenting more specific information relevant to the agency’s criteria for acceptance. With an adequate knowledge base obtained through the use of such an assessment, and with knowledge of local healthcare delivery systems and community agencies, the nurse will be able to assist the family more fully. Specific information about resources, points of entry, costs, and quality of services may be offered to the family members to enable them to evaluate alternative courses of action appropriate to the specific situation and select the most beneficial solution.
IMPLICATIONS In addition to the use of the assessment in work with individual families, we community health nurses have a responsibility to use the data from the assessment in working for social reform. Many families’ so-called health problems are related directly or indirectly to economics, and many of the problems they must grapple with could be relieved if adequate economic support were available in a form acceptable to them. While working with families on a daily basis, we nurses have access to data which support the need for legislation to prevent family destruction by the economic
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drain of catastrophic illness. Through collective action in our professional organizations and consumer groups we can create and support proposals for consumer-oriented legislation.
REFERENCES Addiss, Luke K., “The Family in Today’s Economic World,” Catastrophic Illness: Impact on Families; Challenge to the Professions, New York: Cancer Care Inc., 1966, pp. 9-17. Duff, Raymond S. and August B. Hollingshead, Sickness and Society, New York: Harper and Row, 1968, p. 250. Freeman, Ruth B., Community Health Nursing Practice, Philadelphia: W. B. Saunders Co., 1970, p. 1 10. Hill, Reuben, “Social Stress on the Family,’’ Sourcebook in Marriage and the Family (M. B. Sussman, ed.), 3rd edition, New York: Houghton:Mifflin Co., 1968. Hill, Reuben and Donald A. Hansen, “Families Under Stress,” Handbook o f Marriage and the Family (H. T. Christensen, ed.), Chicago: Rand McNally and Co., 1964. Koos, Earl L., 7 h e Health of Regionville, New York: Columbia University Press, 1954. Nagi, Saad Z., Disabiliry and Rehabilitation, Columbus: The Ohio State University Press, 1969. Olsen, Edward H., “The Impact of Serious Illness on the Family System,” Postgraduate Medicine, February, 1970, pp. 169174. Parson, Talcott and Renee C.. Fox, “Illness, Therapy and the Modern Urban American Family,’’ A Modern Introduction to the Family (N. W. Bell and E. F. Vogel, eds.), Revised Edition, New York: The Free Press, 1968. Sussman, Marvin B., “Family Systems in the 1970’s: Analysis, Policies and Programs,” Family Health Care (D. P. Hymovich and M. U. Barnard, eds.), New York: McGraw-Hill Book CO., 1973, pp. 18-37. Sussman, Marvin B. and Lee Burchinal, “Kin Family Network: Unheralded Structure in Current Conceptualizations of Family Functioning,” Middle Age and Aging (B. L. Neugarten, ed.), Chicago: University of Chicago Press, 1968, pp. 247253.
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Frarnework
I
in chronic illness by Mary G.MacVicar and Pat Archbold
I
--
problem confronting the health-care system today is the effect of long-term illness on the family. Patients’ families must organize many activities around the exigencies of the stabilized or slowly progressing pathologies to maintain the necessary balance between family and individual needs. The extent to which the family can function as a unit will effect its capability in health matters. (Freeman, 1970) Studies of family crisis have produced evidence that there are essentially objective situational factors that can be related to different family response patterns. Those factors affecting family adjustment to crisis events as suggested within the Hill and Hansen (1964) framework of family stress and the implications for nursing intervention constitute the major focus of this discussion.
A
180
MAJOR
VOLUME X V
NO. 2
1976
Examining the process by which families define an event as a crisis, Hill and Hansen (p. 803) identified four interrelated, but conceptually distinct, factors which influence the family’s ability to cope with the illness experience. These are : 1. Characteristics of the Event a. Nature of the pathology and system effected b. Type of disability c. Prognosis d. Potential for rehabilitation e. Family’s perception of the illness 2. Perceived Threat to Family Relationships, Status, and Goals a. Past family roles, relations, and communication patterns b. The change in the above roles, relations, and patterns secondary to the illness (both real and perceived) c. Decision-making patterns before and after the illness d. Individual and family ‘life goals,’ and changes in life goals secondary to the illness e. Feelings on the part of individual family members about the changes in relationships, status, and goals 3. Resources Available to the Family a. Demographic data: household composition, age, sex, educational background, ethnicity, religion, occupation, income, marital status, housing status, transportation available, insurance policies b. Persons: family members, friends, and community groups available to the client and family
4. Past Experience with the Same or Similar Situation a. Past crisis experienced by the family b. Decision-making patterns employed during the crisis c. Individuals identified by the family as ones who can be ‘counted on’ in time of crisis
NURSING FORUM
181
This analytic framework provides a basic rationale for both family assessment and for determining the individual patient’s concerns, many of which are generated within the family structure. Following a brief discussion of the family system, we will examine these four dimensions separately to assess the independent influence each exerts on the family. We will also present a case study to illustrate the relevance of this approach for nursing assessment and intervention. THEFAMILY SYSTEM The family is conceived here as a partially open system, characterized internally by paired positions, such as husbandfather, wife-mother, daughter-sister. There are, of course, greater variations of these positions as the family definition is expanded within a multigenerational context or the extended kinship unit. For each position there are role prescriptions which specify appropriate behaviors and regulate the relationships of family members in daily living and over time. (Hill, 1968) When illness strikes, the role occupants do not abdicate their positions. That is, the mother remains a mother and wife but is unable to fulfill the obligations of either role. Depending on the severity and length of illness, role impairment or complete role disruption may become permanent. Family process and the general status of the family in society are intricately related to the successful enactment of multiple roles. Participation in the larger community occurs through occupational and educational roles, among others, and by membership in various civic and religious groups. Illness is disruptive to the network of relationships which constitute the family system and to those which link the family to the community insofar as the specific role obliga-
182
VOLUME X V
NO. 2
1976
tions can or cannot be met. Viewed from the broader social system perspective, the family is vulnerable particularly to such events as illness and unemployment because of its relatively isolated and dependent position within the social structure. Despite the maintenance of intergenerational and close kin relationships, the responsibilities assigned to the conjugal family by society are great. The family must orient and socialize its young, meet the major emotional needs of its members, and be the ". . . bottleneck through which all troubles pass. . . ." (Hill, p. 441) Each member and every relationship within the family are essential to the stability achieved by the unit and to each of the participants as a personality. (Parson, Fox, 1968, p. 382) Illness, then, is much more than an individual concern. The impairment of any family role will require alteration of reciprocal roles. Such reorganization, although potentially stressful to individual family members, is essential to achieve a new equilibrium for the family organization. The process of reorganization involves all family members and can dramatically affect the patient and the outcome of his illness. (Olsen, 1970) The vulnerability of the family unit to a crisis event such as illness is related to the ability of the family members to modify their rcspective roles, perform tasks essential for the continuity of family life, and redefine personal expectations and goals. To understand more fully the process by which families respond to the crisis and illness, it is necessary to cxamine thc charactcristies of thc pathology, how the family perceives the illness event in terms of family relationships and goals, the resources available to the family, and reorganizational patterns in any previous crisis experience.
N U R S I N G FORUM
183
CHARACTERISTICS OF THE
EVENT
The criteria suggested by Nagi (1969) for the assessment of illness conditions is particularly relevant because it provides a circumscribed approach to a fairly complex issue, and is applicable to a variety of pathologic states. The point in the life cycle at which illness occurs. The type of onset - either gradual or very sudden, allowing no warning. The degree of pain, trauma, and threat to life. The nature and degree of limitations imposed upon the individual's capacity and level of functioning. The degree of visibility, disfigurement, or associated stigma. The type of treatment and care required and received. The state of underlying pathology - either eliminated or arrested; slowly or rapidly progressive. Prognosis and potential for restorative training. Utilizing the criteria outlined above, we can examine the significance of the illness for the entire family from three basic perspectives : the pathophysiologic state; the patient's knowledge and perception of his condition, including real or anticipated residual limitations; and the knowledge, perception, and response of significant others to his affliction. Recognition of the variation in perceptions of illness behavior may have a twofold benefit: a decrease in the tendency to stereotype patients and increased insight into the kind of information patients and their families need to cope with the illness condition. By understanding what an illness means to family members, the nurse will gain greater insight into how the illness may disrupt the network of family. relationships and roles.
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NO. 2
1976
PERCEIVED THREAT TO FAMILY RELATIONSHIPS, A N D GOALS STATUS, Closely related to the characteristics of the illness is the perceived threat to family structure and process. This involves two basic issues - which role is vacated and what adjustments are made in reciprocal roles. In their studies of patient-family relationships, Duff and Hollingshead ( 1968) demonstrated that if the patient were the major source of income, problems tended to be defined as financial ones; whereas, if the wife-mother role were vacated, concerns reflected domestic and child-care tasks. Eventually, those functions essential to the survival of the family group must be performed. When the individual enters the sick role, other family members must take on the tasks and obligations the afflicted can no longer meet. For example, if the wife is the afflicted member, the husband must take on domestic and child-care tasks in addition to his occupational role. In minor, and in some instances acute illness, without accompanying residual impairments, role modifications are of short duration with expectations for a return to normal. However, difficulties can arise when the patient or other family members, or both, derive personal satisfaction from the new role structure and relationships. For example, the wife may not want to relinquish the status and authority invested in her as a result of her husband’s illness. Or the husband may find respite from the “. . . Distinctive rigors of the marketplace . . .” so long as he maintains a legitimate sick role status. (Parson, Fox, p. 380) Conversely, the wife may have extreme difficulty in the management of family affairs, thereby adding to the stress of the husband’s illness. On the other hand, the illness of a family member may require that the wife relinquish a per-
N U R S I N G FORUM
185
sonally rewarding occupational position outside the home to care for the stricken member. In childhood illness, both parents may be faced with the necessity of expanding their roles in several directions to meet the needs of the sick child. Additionally, the prolonged demands imposed by chronic illness on other family members can contribute to the development of multiple health problems within the family, further eroding the system’s coping ability. If health-care personnel are aware that both patient and family are in the process of reorganizing and redefining their relationships, they may temper their responses to apparently bizzare patient-family interactions. Although the patient may be isolated in a hospital, clinic, or welfare agency, he or she remains a family member with a specific position relative to others in the family group. The tasks and expectations associated with the role have been modified or eliminated, which means that new behaviors must be explored as the roles are redefined. TO THE FAMILY RESOURCES AVAILABLE
Health occupies a distinct position within the family’s value system and frequently is evaluated on the basis of competing needs. (Koos, 1954) Mobilizing resources in response to an illness episode often requires the resolution of a variety of demands. How the family copes with illness depends on both the quantitative and qualitative character of its resources. Clearly, family units that have adequate financial reserves or are eligible for assistance do not have the same issues confronting them as families that are not in either category. There is strong evidence that economic marginality tends to increase family vulnerability to crisis events. (Hill, p. 449) That is, when family expenditures equal or exceed their income, the
186
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unexpected costs of illness can jeopardize the family’s precarious financial balance. When the breadwinner is incapacitated, there is the additional burden of loss of income. In these circumstances, families must alter their lifestyles, which may mean a lower standard of living. (Addiss, 1966) Family concerns are not restricted to the financial domain, however. The number of persons available to provide assistance also is an indicator of potential hardship imposed by illness. An industrial society has helped to develop a transient family with considerably looser kinship ties than in the past. Historically, the family unit tended to include other relatives such as aunts, cousins, or grandparents. Today, the trend is toward the mobile, smaller, nuclear unit consisting of parents and their children. However, within the kinship system there is an exchange of aid and services particularly during crisis periods. (Sussman, Burchinal, 1968) But because the achievement of goals and values of intra-family groups must compete with the needs of the crisis-stricken family, such assistance is neither stable nor permanent. (Sussman, 1973)
PASTEXPERIENCE WITH CRISIS SITUATIONS When confronted by a number of unknown factors inherent in an illness episode, past experience as well as future expectations will be strong determinants in the family decisionmaking process. It is assumed here that previous experience with hardship has a bearing on current decision-making process. Basically, if past learning experiences have been positive, the family may be more innovative in exploring alternatives when faced with a new crisis situation. On the other hand, if previous experience with crisis resolution has been punitive in nature, it may well have a deleterious effect on current decision-making processes.
NURSING FORUM
187
Effective nursing intervention requires an understanding of how a family has coped with previous crisis events. For example, what were the general characteristics of the family decision-making process? Was this a collaborative effort, or did one member exercise greater authority over the family group? Was there a family member identified as the primary cause of the trouble; and if so, how do others relate to this individual? Knowledge of a family’s response to previous crisis can provide us with insight into basic patterns of coping behavior already within the family’s repertoire. However, because the initiating cause of crisis may vary it is difficult to predict how a family will react to future crisis events. Moreover, family resources, such as income and available kinship assistance, may vary over time. There is some evidence indicating that well-integrated families tend to endure the hardships imposed by a crisis better than families that are not as well integrated. (Hill, Hansen, p. 11) That is, those families in which individual members shared similar goals and common values, in times of stress were less vulnerable to the disruptive impact of the intrusive force. However, it should be recognized that when faced with multiple problems such as illness and reduced income, the family’s ability to recover is diminished.
ASSESSMENT NURSING The value of a nursing assessment is apparent when one recognizes the unique variations among individuals, families, and communities. In the past, a great deal of emphasis has been placed on the nursing assessment of the individual. However, we are suggesting that, by analyzing the characteristics of the illness in light of the criteria suggested by Nagi,
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we gain insight into the impact of the illness on both the individual and his family. As the requirements of chronic illness and periodic institutionalization become incorporated into the daily life patterns of the family, new behaviors and expectations emerge, are modified, and become more or less routine. Nursing transactions must reflect knowledge of these dynamics. Because of the relatively prolonged contact with the family (either in an institution or in the home) the nurse often is the first person to detect family turbulence.
CASEHISTORY Mr. H is a 47-year-old former heavy equipment operator who had been hospitalized for the treatment of a coronary occlusion. He was forced to retire from his employment because of the illness. His family. consisted of his wife, also 47, and twelve children, five of whom still lived at home. Income for the family was provided by Mrs. H’s earnings. The costs of initial medical care and hospitalization were covered partially by the insurance provided by Mr. H’s employer. Mr. H’s 15-year-old daughter was referred to the nurse because she was pregnant. While the above states the basic facts related to Mr. H’s illness and his family, it does not reveal the impact of the events on the individual family members. Using the Hill and Hansen framework for family assessment in chronic illness one arrives at a more complete picture. Characteristics of the Event: - During his economically productive middle years, Mr. H had an acute onset of an essentially degenerative disease of the cardiovascular system. He received extensive medical and surgical treatment for a
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coronary occlusion, believing that the therapy would “cure” the illness. However, cardiac impairment was extensive and necessitated his retirement, which eroded his confidence in health-care practitioners. Mr. H’s potential for further employment was poor without the benefit of vocational rehabilitation. The lack of visible signs of illness compounded the dilemma for Mr. H and his family, since they had to explain his inactivity to others. Perceived Threat to Family Relationships, Status, and Goals: - Because Mr. H had provided the only source of income for the family, his illness had a great impact on its financial resources. The family members had internalized the values of hard work and independence and, therefore, were unwilling to consider federal assistance programs. Consequently the wife assumed the role of family provider by accepting employment during the evenings as an aide in a nursing home, while maintaining her role as homemaker. Her major goal was to provide enough money to ensure the survival of the family unit. As a result of this commitment, she refused to seek treatment for her elevated blood pressure because she feared additional medical expenses and the possibility of being told she could not continue working. Prior to Mr. H’s illness, as education was valued by the parents as a method for improving lifestyle, they had intended to support their children as much as possible in their education. The decreased family income and the remaining bills for medical treatment prevented them from attaining this goal. Available Resources: - Although the family had a modest savings, built up prior to Mr. H’s illness, this was used up rapidly in supplementing the income and in paying continuing
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medical bills. The income from Mrs. H’s evening employment became the only financial resource available to the family. Other resources were just as scarce. The seven older children lived away from home and were occupied by their own families and occupations. Of the seven, all but one lived in other cities and maintained contact with the parents by mail or telephone, but could not give physical or economic support. The daughter living near the parents had three young children and was not i n a position to offer her parents assistance. The five children living at home were more problems than resources to the parents. In fact, it was the pregnancy of the 15-year-old daughter that thrust the family into another crisis. Community resources for the family also were limited. Additionally, some of the aid which might have proved useful such as Aid to the Disabled was unacceptable to the family because it was perceived as welfare. But, after the change-over of the adult categories to Social Security, they accepted the grant. One critical issue was that of employment for Mr. H. His physician indicated that he could not return to work as a heavy equipment operator and recommended that he work at a desk job. However, with his sixth grade education, Mr. H would require vocational rehabilitation to qualify for such a position. He was refused help by the vocational programs in the area because of his age and lack of formal education. Since much of his self-respect was based on his ability to provide for his family, Mr. H suffered personally as well as economically from the lack of work. Past Experience with the Same or Similar Situation: The family had experienced several similar situations at dif-
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ferent periods in its development. These included two miscarriages early in the marriage, and what the wife described as an “emotional crisis” requiring institutionalization for one of the older children. In all three crises the wife had assumed the dominant role from both a supportive and instrumental basis. NURSING INTERVENTION This family assessment was done by a community health nurse to whom the family was referred as a result of the daughter’s pregnancy. On the basis of the assessment data, the nurse was able to enlarge the scope of her intervention from the pregnancy of the 15-year-old daughter to the entire family. Time was spent with family members discussing their perceptions of the changes that had occurred as a consequence of the father’s illness and clearing misconceptions regarding the illness and its social sequelae. One result of the discussions was that the family began to see Social Security benefits as something for which they had worked rather than as charity, and were able to accept the grant. Additionally, the nurse began to investigate alternative ways of providing vocational rehabilitation for Mr. H. At the time this article was being prepared it appeared likely that Mr. H would be offered a clerical position at a neighborhood health center near his home. Because of her position as wage earner and her dominant role in time of family crisis, Mrs. H’s health became a focus for the nurse. As a result of their interactions, Mrs. H sought treatment for hypertension. Her elevated blood pressure was successfully controlled with anti-hypertensive drugs. All the family members were assessed for health status, and care was given as needed throughout the nurse’s contact with the group.
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SUMMARY Family assessment can enable the nurse to expand the internal and external resource potential of the family unit. Specifically, the nurse may be able to determine what information the client and family need to cope effectively with the illness condition. Additionally, the nurse may supply the family with consumer information regarding qualifications, cost, and appropriate points of entry for additional health and welfare services, and intervene as client advocate by documenting more specific information relevant to the agency’s criteria for acceptance. With an adequate knowledge base obtained through the use of such an assessment, and with knowledge of local healthcare delivery systems and community agencies, the nurse will be able to assist the family more fully. Specific information about resources, points of entry, costs, and quality of services may be offered to the family members to enable them to evaluate alternative courses of action appropriate to the specific situation and select the most beneficial solution.
IMPLICATIONS In addition to the use of the assessment in work with individual families, we community health nurses have a responsibility to use the data from the assessment in working for social reform. Many families’ so-called health problems are related directly or indirectly to economics, and many of the problems they must grapple with could be relieved if adequate economic support were available in a form acceptable to them. While working with families on a daily basis, we nurses have access to data which support the need for legislation to prevent family destruction by the economic
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drain of catastrophic illness. Through collective action in our professional organizations and consumer groups we can create and support proposals for consumer-oriented legislation.
REFERENCES Addiss, Luke K., “The Family in Today’s Economic World,” Catastrophic Illness: Impact on Families; Challenge to the Professions, New York: Cancer Care Inc., 1966, pp. 9-17. Duff, Raymond S. and August B. Hollingshead, Sickness and Society, New York: Harper and Row, 1968, p. 250. Freeman, Ruth B., Community Health Nursing Practice, Philadelphia: W. B. Saunders Co., 1970, p. 1 10. Hill, Reuben, “Social Stress on the Family,’’ Sourcebook in Marriage and the Family (M. B. Sussman, ed.), 3rd edition, New York: Houghton:Mifflin Co., 1968. Hill, Reuben and Donald A. Hansen, “Families Under Stress,” Handbook o f Marriage and the Family (H. T. Christensen, ed.), Chicago: Rand McNally and Co., 1964. Koos, Earl L., 7 h e Health of Regionville, New York: Columbia University Press, 1954. Nagi, Saad Z., Disabiliry and Rehabilitation, Columbus: The Ohio State University Press, 1969. Olsen, Edward H., “The Impact of Serious Illness on the Family System,” Postgraduate Medicine, February, 1970, pp. 169174. Parson, Talcott and Renee C.. Fox, “Illness, Therapy and the Modern Urban American Family,’’ A Modern Introduction to the Family (N. W. Bell and E. F. Vogel, eds.), Revised Edition, New York: The Free Press, 1968. Sussman, Marvin B., “Family Systems in the 1970’s: Analysis, Policies and Programs,” Family Health Care (D. P. Hymovich and M. U. Barnard, eds.), New York: McGraw-Hill Book CO., 1973, pp. 18-37. Sussman, Marvin B. and Lee Burchinal, “Kin Family Network: Unheralded Structure in Current Conceptualizations of Family Functioning,” Middle Age and Aging (B. L. Neugarten, ed.), Chicago: University of Chicago Press, 1968, pp. 247253.
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