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Family Practice, Family Therapy: A Collaboration of Dialogue
Joan D. Atwood, Ph.D.*
Estelle Weinstein, Ph.D.#
*Director, Graduate Programs in Marriage and Family Therapy,
Hofstra
University.
#Director, Graduate Programs in Health, Hofstra University.
Please direct all correspondence to the first author.
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Abstract
Recently, there has been an increased recognition of the importance of collaboration between the Family Medical and Family Therapy fields. In many cases, Family Therapists and Family Physicians are part of the same treatment team. However, this innovative treatment approach is still relatively rare and much more collaboration is needed . It is the purpose of this paper to familiarize Family Physicians with some of the issues and problems that couples and families with a chronically ill member may experience, taking life cycle issues into consideration. A distinction is made between the illness experience and the illness behavior. To this we add, the illness meaning, the social and psychological definitions given to the illness and the resultant scripts taken by the ill member, the couple and by other family members. Therapeutic issues are considered throughout with the intent of beginning a collaboration of dialogue between the two disciplines.
Introduction
Pope and Tarlov (1991), based on the National Health Interview Survey (1988), estimated that 33.1 million people in the had some degree of activity limiting due to chronic illness. Chronic illness refers to a chronic, progressive, and degenerative disease (Devins & Seland, 1987). In the past decade, since the publication of Family Systems Medicine in 1982, there has been an increased recognition of the importance of addressing the therapy needs of medical patients and their families within the context of a biopsychosocial model. Major research studies have focused on such chronic illnesses as diabetes, heart disease, and cancer (Krukofsky, 1988) and their effect on the individual; however, the couple and other family members' therapy needs have not received comparable attention. Minden and Schiffer (1990) emphasize that treatment of chronically ill related affective disorders is the most neglected area of research, in spite of both the seriousness and the prevalence of emotional disturbances among patients and their families with chronic illness. Although there is a suggested relationship between emotional stress and chronic illness episodes and their prognosis (Warren, Warren, & Cockerill, 1991) and while numerous studies of adjustment factors and the emotional impact of chronic illness allude to the importance of mutually supportive marital relationships (Bezkor & Canedo, 1987; Devins & Seland, 1987; McIvor, Riklan, & Reznikoff, 1984; Ventimiglia, 1986; Zeldow & Pavlou, 1984), there is a significant lack of systemically oriented couple and family therapy research which addresses the needs of couples. and families where there is a chronically ill person. Rodgers and Calder (1990) highlight the importance of marital adjustment as a critical factor influencing emotional adjustment to couple relating when there is a chronically ill member. Minden and Moes (1990) suggest that referral of chronically ill patients and their families to psychiatrists, psychologists, social workers, marriage and family therapists, or psychiatric nurses "can be helpful to patients with adjustment difficulties and marital and family dysfunction".
There is an obvious need for more systemically oriented therapy research to address the complex needs of couples and families coping with chronic illness. It is the purpose of this paper to address some of the issues and problems that couples and families with a chronically ill member may experience, taking life cycle issues into consideration.
The Meaning of the Illness
As suggested by Wynne, Shields & Sirkin (1992), a distinction is made between the "...illness experience, the distress, suffering, and perceived loss of well-being, and illness behavior, the impaired functioning that is observed by others and is attributed to illness . To this we add, illness meaning, the social and psychological definitions given to the illness and the resultant scripts taken on by the family members. Implications for therapy are considered throughout. Chronic illness is not simply an individual subjective experience; it is interpersonal and social. The definition or meaning an individual gives to an illness is profoundly influenced by and influences that person's social world. The social culture and the social networks shape and are shaped by the individual's experiences. The meaning of the illness is shared and negotiated in everyday interactions and it is deeply embedded in the social world. As such it is inseparable from the structure and processes that constituted that social world (Atwood, 1996). Thus, to explore the definitional processes involved in chronic illness is to explore the individual's interpersonal relations and the resultant meaning system.
Unexpected, health related life events raise many questions for therapists and other health service providers. What are the factors that determine the onset of serious, chronic and degenerative diseases and how does the progression of an illness affect families? To what extent does gender, the life cycle stage of the players at the onset of the illness (childhood/adulthood), roles, couple relationships, social support systems, and finances contribute to the way families cope. Can family systems be strengthened rather than or weakened in the face of health problems? How do marital and family dynamics, belief systems, rules and boundaries determine the physical well being of its members and their ability to adapt to physical health problems?
A Bio-Psycho-Social Perspective
Until recently, disease was thought to be a function of the breakdown of bio-physiological processes (Engel, 1980a; Serafino, 1990). This bio-medical model of disease assumed that there were distinct separations between the mind and the body. Within this framework, health was an exclusive function of a person's physical state. While there are some changes emerging, the medical system in this country is still primarily a product of this model (Serafino, 1990), and within this belief system, interventions consist almost entirely of medical technologies. The medical system concerns itself with the treatment of the biology of an illness in an individual. Little clinical attention is paid to the person's mental health and even less attention is paid to his or her family. Only recently in our history have we begun to consider a newer, theoretical conceptualization of health and disease known as the biopsychosocial model (Engel, 1977; Engel, 1980b) . This multi-factored perspective suggests that an interaction of the biological, psychological, and social aspects of a person's life are the determinants of his or her health, the onset of illness, and often the prognosis. Even the immune system which was thought to be a strictly biological response, is now thought to be influenced by emotional factors, and even the course of chronic illness is now considered largely determined by lifestyle behaviors (Sarafino, 1990). Now, it is believed that psychological factors, such as cognition, emotion, and motivation for behavior and mental processes contribute to a person's proneness for illness and also to the person's speed of recovery (i.e., positive attitudes decrease recovery time, negative attitudes extend recovery time (Sarafino, 1990). Thus, the social systems in which a person functions (family, work, and community) influences their belief systems, lifestyle, and experiences with health and how ultimately they use health providers. These recursively interact with many other health determining factors. Out of this broader bio-psycho-social model has come evidence of changes in the preparation of medical providers and changes in the thinking of mental health personnel, especially in the field of marriage and family therapy, where the specialty, family systems medicine, has emerged. This thinking offers an opportunity for medical practitioners and family therapists to collaborate in their efforts to help families with serious, chronic and debilitating illnesses. Such collaboration means learning about the training, theoretical paradigms, languages and working styles of each profession. This serves to decrease power issues and increase communication between them (McDaniel, 1992). For family therapists, it means understanding the biology of disease and the medical approaches to treatment. For the medical practitioner, it means learning about how family systems affect health and how health status affects families. For the family, it means that there will be a respectful acknowledgment of the disruptions and emotional responses that an illness may inflict upon a family. This approach focuses on the family's strengths and supports. Utilizing Family Social Workers and Family Therapists for organizing family conferences between the chronically ill family member, the other family members, and the primary care physician can be of great value. In addition, these mental health professionals can play a key role in coordinating medical and mental health services for the family coping with chronic illness by educating the family about community resources such as support groups, etc.
Family Life Cycle Considerations
Biopsychosocial factors change systematically in response to developmental stages (Sarafino, 1990) . For example, the biological functioning of older people is challenged by many more chronic diseases than middle aged people or children, just by virtue of more lengthy normal wear and tear on their bodies. Rolland (1989) proposes a model which emphasizes the intertwining of evolutionary threads: the illness and the individual family life cycles. He proposes a typology which conceptualizes distinctions of (1) onset, (2) course, (3) outcome, and (4) degree of incapacitation. By combining the kinds of onset (acute versus chronic), course (progressive versus constant versus relapsing/episodic), outcome (fatal versus shortened life span versus nonfatal) and incapacitation (present versus absent) into a grid format, Rolland generates a typology of 32 potential psychosocial types of illness . In addition to the core themes, he also utilizes the context of three major disease phases: (1) crisis, (2) chronic, and (3) terminal, in order to follow the history of the disease process. This facilitates an appreciation and understanding for the ever-changing needs and requirements of the patient, the couple, and the family system over the course of the family life cycle. In addition, he incorporates the concepts of centrifugal (forces that push members apart) versus centripetal (forces that push members together) family styles and phases in the family life cycle (Beavers, 1982; Beavers & Voeller, 1983) as a means of integrating family, individual, and illness development. It is particularly useful to bear in mind the significant centripetal pull which chronic disease exerts on a multigenerational family system, and its potential impact on the couple's boundaries and the established hierarchy within the family. For example, if the couple has children, the therapist's interest in their adjustment process may prompt a sharing of the parents' concerns and a discussion of problem solving options. This may also have the effect of strengthening the parental hierarchy. For couples who wish to have children, there may be concerns regarding genetic factors relating to the chronic illness and the potential risks of pregnancy.
Illness as a Life Event
Becoming chronically ill is a life event. A life event may be broadly described as an array of experiences that require significant changes in the ongoing life pattern of the individual (Holmes & Masuda, 1974). Life events may be categorized in three ways: normative age graded events, such as marriage, childbirth, or menopause; normative history graded events, such as wars, economic depressions, etc.; and non-normative events, such as illness, disability or job loss. Chronic illness falls into the last category and as such necessitates a redefinitional process by all family members. This redefinitional process involves the incorporation of the idea that a family member is ill. This is a continual, co-emergent process which is played out by different family members in different ways. It primarily involves a construction of a reality centered around the concepts of sickness and disease, often involving isolation and control. The "sick" family member becomes more isolated as those who are healthy take on more controlling attributes. The process is painful, not deliberate, yet generally involves the taking in of the symptomatic patient definition. Life events may be understood broadly as experiences that require "significant change in the ongoing life pattern of the individual (Holmes & Masuda, 1974)." Hultsch & Deutsch (1981) classified events in three categories. The first, normative age graded events, are determined largely by biological capacity or social norms; and accordingly, their timing and duration are similar for many people. Representative examples include marriage, childbirth, menopause, and retirement. The second category, normative history graded events, are experienced by most members of a cohort. Representative samples are wars, political shifts, economic depressions, and mass immigrations. The third category consists of non-normative events. these are weakly correlated with life stage or historical time, which are idiosyncratic in occurrence, and limited to a small proportion of the population. Examples include illness, disability, and job loss. The sociological impact of family or cultural membership effects belief systems, family rituals, and the different ways people use the healthcare system at different times during the life cycle. The response to a child's illness, the role sick family members play, the respect for or willingness to use health professionals- - all have roots in family of origin dynamics. Hence, interventions that increase people's ability to delay the onset of or cope with serious illness must include an understanding of disease entities, expected physical prognoses, and psycho-social implications, especially interpersonal relationships, coping styles, and present and past family dynamics. When the onset of chronic illness coincides with transitional points in the individual or family life cycle, there is perhaps an even greater risk of problems. "The added centripetal pull exerted by a progressive disease increases the risk of reversing normal family disengagement (i.e., child going away to college) freezing a family into a permanent state of fusion" (Rolland, 1989, p. 450). An important aspect of therapy with couples in the reversal of such centripetal overreactions involves frank discussions of what they see as realistic alternatives and options.
The Social Construction of Illness
As stated earlier, much of the writings on chronic illness sees disease through a bio-medical lens meaning that chronic illness is looked at primarily as an organic phenomenon characterized by gradual deterioration, occurring to an individual, and currently having no cure. Chronic illness is diagnosed using biomedical assessment techniques and the care of the individual is under medical authority, which may involve the prescription of medication and/or hospitalization. However, seeing chronic illness only through a biomedical lens is limiting in that it gives little consideration to the social factors affecting disease definition, experience, and/or progression, including the balance of power in the relationship of caregiver and patient. Using only bio-medical lenses to view the chronically ill results in the medicalization of the disease, the individual, and the family which could lead to a justification of control "for the good of the patient." Berger and Luckmann (1966) describe Social Construction assumptions which question the above medical model approach. They describe social constructions as the consensual recognition of the coherence or realness of a constructed reality, plus the socialization process by which people acquire this reality. The social constructionist approach believes that all humans participate in social action and interaction which takes place in a socio-cultural environment. This socio-cultural environment includes "taken for granted" assumptions, rules, and beliefs about what it means to be sick, to have a disease, etc.
It is within this framework of shared definitions that patients and caregivers interact and behave accordingly. And it is this social context that determines individuals' scripts for behavior. Scripts are plans that people have about what they are doing and what they are going to do. They justify situations that are in agreement with them and challenge those that are not. They constitute the available repertoire of socially recognized acts and statuses, and roles and the rules governing them. Scripts operate at a social, personal and intrapsychic level (Atwood, 1992). Within this framework, shared knowledge of chronic illness is a collective definition, part of the sociocultural world of the person with that of their caregivers. The social constructionist model acknowledges that a problem or belief about an illness is a construct of both the family and the therapist and not simply a function of the sick individual's situation. It recognizes both the family and the therapist's beliefs about how the illness influences the way the family organizes around the illness. It focuses on the therapist respectfully identifying the family's beliefs about what the illness is, how the illness effects their family, and what changes the family would like to have in their response to the illness. The family's perceptions and beliefs change about the illness experience and the family is able to utilize alternative responses to help alleviate pain, suffering, or restrictions.
Narrative Focus
More recently, there has been a recognition that language plays a crucial role in how people "see" and thus experience illness. According to this narrative line of inquiry in the social and behavioral sciences, people revise accounts of life experience in the face of unexpected or adverse events so as to maintain a sense of coherence, continuity and meaning (Gergen & Gergen, 1983). In this sense narrative processes can be understood as reflexive efforts to cope with negative life outcomes and to deal with the impact of change and loss. In spite of definitional problems inherent in the concept (Sarbin, 1986), theoreticians concur that narratives must organize events in such a way that they demonstrate a sense of coherence as well as a sense of direction or movement over time (Bruner, 1990; Mishler, 1986; Ricoer, 1981). The assumption is that narratives carry implications for the well being of the narrators and point to a range of potential outcomes. In so doing, they reflect a valuative condition and provide an indication of events to come. In effect, this suggests that each person becomes a historian of the self, developing an internally consistent interpretation of the life cycle so that past, present, and future are experienced as congruent. The assumption is that such processes work to preserve a sense of coherence and continuity in identity and self, which are seen as critical determinants of mental health (Antonovsky, 1987; Basch, 1976; Cohler, 1982; Erikson, 1963; Kohut, 1977).
The therapist can assist the family in mourning the loss of their pre-illness expectations, discovering their resources and defining new meanings for themselves. By obtaining information about the illness and learning about other families' experiences, the family can normalize what is happening to them while taking control of what may seem to be an uncontrollable situation. It is important that the ill member actively participate in creating the narrative, collecting information, and restructuring family responsibilities. Research About Illness It is important to note that a good deal of the research that addresses the interaction between family and health is anecdotal and lacks solid design, thereby compromising our ability to generalize the results. The literature that does exist primarily addresses medical conditions and the burdens associated with the provision of care (by spouse or other) often to the exclusion of how the interpersonal relationships in the family are affected or effect the physical health of its members (Creasey, 1990). Hence, interrelationships between social and psychological factors, including economic and demographic variables and their influence on the impact of illnesses and family dynamics, has largely been ignored. What is presented below is a discussion that defines terminology and provide a framework for understanding the important issues with regard to chronic, serious illness and the family.
Until recently, the medical and scientific community had virtually conquered or controlled most communicable diseases (e.g., smallpox, measles, diphtheria, etc.). Even in the sphere of the Human Immunodeficiency Virus (HIV), the major causes of death in this country became chronic degenerative diseases especially heart disease, cancer and stroke. While HIV infection is communicable, it destroys the immune system and person's with Acquired Immune Deficiency Syndrome (AIDS) actually die of opportunistic chronic diseases. Chronic diseases are those that develop over time, progress symptomatically, result in permanent, compromising changes in the person's health, are mediated by lifestyle, and often have a genetic component. The effects of a chronic disease, while in some cases are predictable, more often vary over time from patient to patient. On the other hand, serious communicable or infectious diseases that also affect health status are transmissible from one person to another and have a limited time recovery or ultimately result in more chronic conditions if they do not end in a relatively swift death. While risk factors for chronic diseases have historically been identified as behavioral or genetic in the diagnosed person, recently health professionals have begun to explore interpersonal relationship factors as they relate to risk for illness. Some of the questions considered are: To what extent does personality, lifestyle, behaviors, etc. in one spouse increase the likelihood of serious illness in the other? Can characteristics in a well spouse be the cause of an illness in the partner? How will individual characteristics or couple dynamics affect the way a couple lives with an illness when it occurs? How do parental characteristics affect children's experiences with illness and their belief systems?
Haynes (1983) was one of the first to demonstrate less conventional risks for coronary heart disease (CHD), including those associated with and heightened by certain characteristics in a spouse. Swan, Carmelli, & Roseman (l986) studying this phenomenon named it "cross-spouse" risk factors" . They found that such factors, such as higher social mobility, increased life pessimism, high school or above education, higher levels of activity and dominance, were significantly important to women married to men with CHD who were also Type A personalities. While these characteristics are significantly present in their spouses, what has not yet been determined is if, and how, this notion of interactive causality functions. Had the disease in the husbands resulted in the wife's pessimism, which in turn affected his coping or, is her increased activity or dominance a response to his illness? Levenson and Gottman (in Swan & Carmelli.....) studying marital interaction and satisfaction as they relate to serious illness found greater physiological symptomatology among couples who reported dissatisfaction with and conflict in their marriages than with those who reported being satisfied. A serious illness often results in the disruption in the social and recreational activities for the diagnosed person as well as the other family members; but, it also has specific implications for a marital couple. Research indicates that an ill person's contact with friends outside the family usually diminishes considerably because of such things as; medical limitations, physical exhaustion, and embarrassment about physical appearance that has resulted from the illness. This in turn limits the spouse's social activities. For example, in the case where an insulin dependent diabetic needs to adhere to a strict diet, attending dinners and parties might be too tempting. Or, in the case of a cancer patient undergoing chemotherapy or radiation treatment, the ill person may be just too exhausted to be sociable. If there is disfigurement resulting from an illness, the person may be afraid of rejection from close friends or people staring at him or her in public places. Thus, the couple may avoid these social functions. The spouse or other family members may begin to feel isolated, in need of social stimulation, guilty if they partake and often angry at the ill spouse. Swan (l986) found that for up to a year or so after a diagnosis or onset of a serious illness, spouses of an ill partner reported increased depression, anxiety and a major disruption in their routine. Yet, over time the couple's balance appeared to return.
In addition to the emotional distress that occurs in an ill spouse, the well spouse often experiences a revisit of, or a host of new physical and psychological symptoms of their own. And, the data indicate that well spouse difficulties significantly influence the coping and psychological well being of the ill partner (Manne & Zautra, l989). This research explains that when a relationship is stable and positive, couples are better able to withstand the struggle of serious illness and in some cases report their relationship is even strengthened by it; whereas, if the relationship is troubled it may be destroyed (Shlain, l979) .
Mullan (l983) looked at longer term effects (over 10 years after a coronary incident), and found that less than 20% reported less satisfaction with their marriage and 25% actually reported increased satisfaction after chronic illness entered the family. While the passage of time generally helps people adjust to new and possibly life threatening life cycle situations, some couples report that their relationships and commitment deepened as they re-evaluated what was important to them.
Reactions To A Diagnosis Of A Serious Illness
A diagnosis of a serious illness provides medical practitioners with a label and frame of reference with which to approach patients. While the diagnosis speaks to bio-physiological factor, it does not begin to suggest the psycho-social demands that the diagnosed individual, couple and family may face (Rolland, l993) .The label of the disease itself often addresses the beliefs and past experiences of the people involved with the illness. When a person is diagnosed with cancer, for example, several expectations may be made. If there is the belief that cancer is not "treatable" or "beatable," and is physiologically devastating, then, compensations often begin even before any severe symptoms manifest themselves. The person may develop a "sick" role by virtue of the diagnosis alone. Here people tend to surrender their responsibilities to others. This can result in a shift in the family power and further encourages the diagnosed person to define him or herself as no longer capable. This sick role may have some advantages, for example, in a disease that runs a particular course it may give the diagnosed person an opportunity to rest and recover with a respite from the usual responsibilities. On the other hand, it may discourage the person from maximizing their coping abilities.
ven in the case where the disease requires the ill person's constant self- monitoring , people who have taken on the sick role tend to relinquish their decision-making rights and caretaking to health providers or significant others. On the other hand, some people may believe that cancer is not a death sentence, but an opportunity to deepen their lives, to bring new meanings to their relationships, to increase their religious affiliations or to take control and "be strong," perhaps for the first time in their lives. As a result, these responses can result in many positive changes in family systems.
Shontz (l975) outlines a common sequence of reactions person's tend to have when they are diagnosed with a serious illness. The first reaction, shock, is characterized by bewilderment. The person behaves in an automatic fashion, exhibiting feelings of detachment from the immediate situation. These avoidance reactions are a means of getting distance from the overwhelming feelings. In the second phase a person may exhibit disorganized thinking, and feelings of loss, grief and despair. This is more typical when a diagnosis comes without warning to a seemingly healthy person. The third phase is characterized by a denial of the circumstances, along with an acknowledgment of the existence of the health problem. However, in most cases, the reality of the situation returns slowly as the person's ability to cope increases. If avoidance and denial are maintained over too long a period of time, a person may become immobilized, especially in his or her ability to gather information about the problem. This can prohibit them from making timely decisions about their treatment or care needs. This could also result in another family member taking over the decision-making role, evaluating treatment options and providing daily care. It is in this situation that power shifts, role reversals and conflicting triangulations occur. Or, as the family surrounds the ill member, it can result in bonding more closely, strengthening each member into a support system. These increases in family bonding and support also may increase healing and promote coping.
While shock is a fairly consistent initial response (Shontz, l975) , some persons who become ill do not become disorganized or evidence avoidance behaviors. They seem much more in control and accepting of the illness and begin to structure their lives around the necessary accommodations. It is family of origin tapes, socio-cultural beliefs about illness and economic and social circumstances that effect these more immediate reactions to serious health problems. Peoples' beliefs about the identity of an illness (Meyerowitz, 1983) , the cause, the duration, and the consequences of their conditions are important predictors of their ability to adjust.
Locus Of Control
Reactions to health concerns have also been explained by theories of "locus of control" and self-efficacy (Phares, l987) . Rotter (l966), developed the original scales for measuring internal and external locus of control, and Wallston, Wallston, & DeVellis (l978) applied these concepts to a health related measure called the Multidimensional Health Locus of Control Scales. People with an "internal locus of control" believe that they are in control of their own successes and failures. Hence, people with a powerful internal locus of control believe that something they do or do not do determines their health status. These individuals are also more likely to think that their ability to overcome a serious illness is determined by themselves and their behaviors. They verbalize things like, " If I give in to this, I will get sicker," or "I'll decide what is best for me!" They also tend to make their own informed decisions about their care and adhere to regimens that they believe will work. People with an external "powerful other" locus of control are more likely to believe that professionals or others outside themselves determine their illness successes or failures. These individuals believe that the outcome of their illness is determined by their doctor or surgeon and generally leave their care in the hands of a medical professional, basically doing only what they are told. Chance locus of control is exhibited by people who believe that luck, fate, or God determines their successes and failures. Persons with a chance locus of control will say things like, " If I'm lucky, I'll get over this" or "If my time is up, it's up, and nothing I can do can change that."
As people move from middle to older age, their notions of chance or powerful other locus of control tends to increase and they are more likely to turn to medical professionals to make their health related decisions (Lachman, 1986). People who optimize their health by living healthy lifestyles believe that they can determine their own health status. People who exhibit less stress and those who tend to cope with serious illnesses tend to have stronger internal locii of control. Eternality or internality of control also influences the way people use the healthcare system. Individuals who hold belief systems that incorporate notions like "the doctor knows best" and turn their care over to the practitioner are less likely to seek second medical opinions and medical procedures unless their primary physician suggests it. Few questions are asked about the treatment process, treatment expectations, or the protocol and they tend to perform as the "good patient." On the other hand, believing in fate or God often causes people not to seek treatment or can limit the treatment they seek because they do not believe it will make any difference in the outcome.
As stated before, belief in one's ability to control health related events and where a person falls on the locus of control continuum is largely determined by family of origin experiences, culture, and social groups. In the case of couples who hold diverse beliefs about their ability to control or determine outcomes, when a chronic illness diagnosis is made, a more chaotic response is generally observed. Poor physical health in general and especially chronic disease tends to erode individuals sense of control over their life and destiny (Baltes, 1990). Emotional well being is likely to decline as health status is severely compromised. Hence, the tasks for managing serious chronic illnesses include achieving some measure of control over the symptoms of the illness, adhering to complex treatment regimens, coping with the uncertainty of a prognosis, supporting and maintaining family, work, social relationships, and other usual responsibilities within the parameters of the illness, and continuing to set goals and plans for the future. Furthermore, a sense of self-efficacy or the belief that, " We can succeed at something we want to do, is another factor in maintaining a sense of control in the face of serious illness (Bandura, 1977) .
Adherence/Compliance
When a crises period of serious illness subsides, the medical treatment plan for controlling the disease and preventing additional problems is to a major extent reliant upon the ability of a person to select and adhere to medical protocols that have been found to be successful. It is important for the family to support these protocols. This is presently referred to as "adherence" (DiMatteo, 1982; Turk, 1991) . In the medical literature, adherence occurs at two levels: (1) primary adherence which refers to a person's ability or willingness to carrying out activities that prevent the initial onset of illness, and (2) secondary and tertiary adherence which refers to following prescribed procedures that are aimed at controlling a specific health condition from getting worse (Turk, 1991) . The terminology "compliance," rather than adherence was more commonly used in the past, suggesting that people with diseases follow the steps assigned to them by medical practitioners. The present notion of "adherence" requires that people make informed decisions, by selecting and then adhering to a specific protocol. It is this commitment to the decision and the following of the particular protocol that is believed to determine the physical outcome of an illness rather than the medical effectiveness of a particular drug or procedure (Epstein, l984).
This taking of action on one's own behalf often results in feelings of self confidence, an increased sense of well being, and an increased likelihood of participating in ancillary healthful behaviors that ultimately limit or control the effects of serious illness. Movement from the terminology "compliance" to "adherence" in the health field indicates shared decision making about health behaviors between practitioners and patients.
Several factors have been identified as affecting people's ability to adhere to specific health behaviors. These include: a simplified understanding of the protocol or regimen, an ability to implement a protocol with a minimum of life changes, satisfaction with and a feeling of confidence in the source of the regimen, the specificity of the regimen including such factors as length of time needed, cost, etc.; and the social and psychological factors in the person's environment that influence the activities (Sarafino, 1990; Turk, 1991) .When individuals make a commitment to a protocol that is in concert with their belief systems and the roles and behaviors of their significant others, there is a greater likelihood that the process will be followed.
Sometimes, individuals have a person in their family that they look to for family's health matters and decisions. Adherence successes can be closely associated with approval from this pseudo family doctor. Often, the family's support in adherence activities deepens the family's trust and intimacy; however, families have been known to sabotage the process. In the authors' clinical practice, it was suggested to a man who recently suffered a heart attack that diet and exercise would help him to control his disease and decrease his risk of sudden death. He discussed with his wife what this would mean to each of them. The family ate together often and their dietary habits did not resemble the required diet. Moreover, the only social activities the couple participated in together were during dinners out. At first the adjustments seemed easy as the risk of dying from heart disease was central to their fears. The family shopping and meal preparing was done by the wife and she indicated her complete support of the new eating behavior and the healthier eating habits by decreasing her own weight. The exercise protocol required him to exercise regularly at a rehabilitation center after work which, while she completely supported it, would decrease their dinner time together. As distance from the acute heart attack and the possibility of death was achieved over time, the couple began to lose interest in maintaining the healthier behaviors. The restrictions it posed on their social structure became problematic for them. As his health became less central to their fears, she began to pay less attention to what they ate and he went back to his "couch potato" evenings. They argued frequently, she accusing him of not taking care of himself and leaving all of the burden to her and he accusing her of putting him at risk for another heart attack by planning social dinners with friends at places where he could not choose healthy meals. At a support group they met other couples with serious CHD illnesses who encouraged them to join a local health club and a bicycle traveling group. The definition of themselves as a "diseased couple" receded as these new social activities enabled them to participate in a new, healthier social life, assisting them to create renewed interest in each other.
Implications For The Family
Individuals and their families deal with a wide range of issues when a chronic illness enters the family. Issues can range from existing issues prior to the illness, to fear of abandonment, fear of death, spiritual beliefs, and exhaustion from caretaking and interaction with the medical community (Atwood & Ruiz, 1992; Harrington & Messer, 1994; McDaniel, Hepworth, & Doherty, 1993; Rolland, 1994). Although a serious illness manifests itself in one member of the family, it is perceived as an intruder by other family members. Eventually the illness itself becomes an independent functioning member of the system, with its own separate identity. It is demanding in that it requires readjustment of schedules, roles, finances, etc. It elicits anger in that it is often uncontrollable and causes pain and fear. It is selfish in that it must be attended to whenever it demands, despite other activities or interests. It is isolating in that it often changes intimacy and friendship patterns.
While the family's task is to meet the ill person's medical and other caregiving needs, the emotional well being of the entire system is challenged. This may lead to couple or family discord that continues to decrease health status which in turn negatively affects family dynamics. Family scripts and experiences with illness have implications to the functioning of the system and its ability to adapt. If, for example, the family has a definitional system which includes ideas that the illness could have been prevented or that it was caused by themselves or another family member, then a place for blame is sought, i.e., the family diet was not healthy because it was not a priority of the meal preparer, or the ill person worked too many hours on his/her job, or the children caused "too much stress". These types of thought process attempt to explain or offer some level of control over what feels like an uncontrollable situation. Hostility, low self-esteem, and other negative patterns may develop as the family system is threatened. These patterns tend to create distance from the problem or create distance between family members, often closing down communication and leaving little room for accommodation to the new situation. In some cases, blame is sought outside the family system. Here, it is usually directed toward the medical profession, i.e., the doctor incorrectly diagnosed the ailment or took too long to recognize it. In these cases there is a loss in faith in the medical system which may result in the delay of necessary treatment. The demands of an illness often deplete energy, dissolve optimism, and create depression. If the chronically ill person experiences depression, it may lead to other family members having increased risk for depression themselves (Coyne, 1986) . Also, those family systems with existing problems, tend to adjust less well to their new situation and exaggeration of the negative patterns may occur (Swan, Carmelli, & Rosenman, l986).
When an illness compromises the diagnosed member's physical capabilities and personality characteristics, there is a constant struggle on the part of the person to maintain equilibrium. In some cases, this struggle creates growth, development, new closeness and trust in the primary or family relationships as needed shifts in roles, power and responsibilities emerge. However, in other cases, as the person's self care capabilities decrease, resentment, jealousy, and/or feelings of overburdenedness may occur as the family relationships deteriorate. The task of maintaining the family support and intimacy is ongoing for all members. In order to effectively accommodate and regain equilibrium, it is helpful for family members challenged by serious illness to receive information about the expected patterns of the particular disorder or illness and the resultant practical and emotional demands these patterns may create for them over time (Rolland, l993). In addition, it is helpful for them to address their mythical notions about the illness in light of the medical realities about the health problem, and to "language" their fears with each other. Open communication for all family members is crucial. Living with secrets can encourage fear and guilt. Since all family members may be anticipating loss, it is helpful to discuss the issues of health care, living wills, powers of attorney and finances in the present. This may help the family to keep their affairs in order at a time when they are under tremendous stress. The onset of an illness, whether an acute attack or a gradual development of symptoms, has implications for how families will function, as does the nature of the expected progression of a particular disease (progressive, constant or relapsing) and the expected outcome for survival. Can a course of events be outlined for an individual upon diagnosis, including the degree of disability and pain that is likely to occur or is the future vague and uncertain ? (Rolland, l993). What medical interventions are available and how can people access them?
The family's definition of health and illness and the meaning they give it contributes to their ability to set boundaries around a health problem. Finding the appropriate place for the illness so that it does not become the central focus of the family serves to limit the boundaries of the disease. When boundaries are not established and maintained, the illness invades all aspects of the family system and the family becomes uni-focused. The individual's physical limitations become the family's limitations. Here, plans and activities for all members center around the activities associated with the illness (going to doctors, taking medication, etc.). In this case, the therapist can commend the family and individual's strengths. S/he can offer information, validate and normalize emotional responses, draw forth family support, encourage respite, and reinforce the continuance of family rituals. It is important for the therapist to assist the family in dealing with those problems that the family have collaborated and contracted to change. Any interventions should match the family's style of relating, and interventions should be linked to the family's strengths and previous useful solution strategies.
Enmeshment/Disengagement
Disengagement may occur among family members who cannot cope or are unable to caregive in ways that are acceptable to themselves or the system. Others may become so enmeshed in the symptoms and disease entity that it becomes difficult to distinguish between the sick member and the others who are well. While the ill person is still able to maintain his or her past roles or tasks with some modifications, the enmeshed family might usurp that ability and elicit a lack of competence. When the sick role becomes assigned to an individual with a previously dependent spouse, that spouse when encouraged may become stronger and better functioning. But, as they do so, there is an obvious shift in the power in the relationship away from the ill spouse.
Inverted Hierarchies
Family structure involves system boundaries, roles, sanctions, attitudes, and values that guide family members. Thus, it is these structures that are challenged by the introduction of chronic illness into the family system. Timing is also an important component of the systems well being. In some cases the type of serious illness determines the timing factor. In cases where the onset of an illness is acute, changes tend to occur very quickly. Often the ill person is hospitalized during acute attacks. In an acute phase of illness, the family may become off balance as much of the decision-making falls to the medical community and the major family tasks become survival and treatment. Family members spend much of their time at the hospital. The outside world and the day to day activities recede as the illness takes the foreground again. Social relationships may change as family members become unavailable to their friends, especially when they are involved in the immediacy of the illness. When a person enters a hospital or other medical in-patient facility, the family's identity is lost as is the ill person's. The rules and behaviors specific to that family are disregarded as the hospital rules become the governing forces. The concerns of the hospital staff center on the "patient" in need of services rather than on the individual with an independent identity or a person as a member of a family system. The care and day to day life become routinized according to hospital schedules. The ill person may take on the role of the "good patient", giving over their destiny to the medical staff. This medical environment is conducive to doctors/nurses and patients creating parent-child relationships or inverted hierarchies. The non-assertive family often is carried along with this redefinition, feeling safe that someone in authority has taken over the caretaking.
The Rigid Hierarchy
In other situations, patients and their families fight hard not to give up their rights and roles to the hospital facility and the personnel. The complication of maintaining one's independence and needing to be cared for is a difficult balance. Family members often rebel against the routine and the limited access they have, not only to each other but to information about care. Anger is not an uncommon emotion.
Triangulations
In some cases, a more chronic debilitating illness results after the acute phase. In these situations, medical personnel may become a permanent, important sphere of influence on the family, if not full fledged members of the system. In some cases the medical practitioner is "triangulated" (refers to the recruitment of a third person into the family system for purposes of lowering the intensity of stress and anxiety and to regain stability) in the family system. The triangulated relationship may be with the caregiver or the patient and can contribute to conflict and confusion in the system. If the acute phase ends and the person survives, a period of rehabilitation or healing begins. The participants in the system work toward regaining their balance and helping the ill person maximize their resulting health functioning. At this time, what occurs is an assessment and understanding of the more chronic conditions and disabilities that will remain a part of the person's life forever. The threats of loss and disability have considerable implications to the family's ability to function. Changes in physical appearance and emotional state result in the sick person revisiting most of the important components of their life, roles and future plans. As a result of the illness, some of these plans may vanish while others may become stronger as a new identity is sought. The family system reorganizes as the chronic illness is given its family position. Changes in the rules that govern the system are effectively made as the family becomes centrally or peripherally (depending upon the severity of the symptoms) organized around the illness. When there is a particular health problem that has an expected progression, the changes tend to be more subtle and can be planned and managed as the family adapts to the definition of the disease.. Time allows for adaptations with less disruption to occur as a full understanding of the impending physical changes emerge more slowly.
The Roller Coaster
Chronic illnesses like cancer can have periods of remission between bouts of serious debilitation, which can create a roller coaster type of effect. During remission, there is a slow "lulling " away from the immediacy of loss, fear, and suffering. During the re-occurrence periods, impending loss, helplessness, feelings of anger, confusion and fear are likely to return. Here the individual's short range goals and future plans are severely disrupted and life seems to take on an unpredictable dimension. Finances In situations where an ill spouse holds a primary role like providing for the family's income or child care, there may be fear of the future. In addition, sometimes guilt arises. An ill spouse may have to make decisions that demand acknowledging the outcomes of his or her illness. Here the challenge for the family is to verbalize the emotions and assist the ill person to maintain as much independence as possible while releasing responsibilities. This can sometimes be accomplished by shifting and changing roles rather than giving them up.
Life-cycle Issues
The lifecycle of the sick person and the developmental stages of the other family members has implications for the family's ability to adapt. The impact of disabilities on the expectations and skill mastery at one stage may differ considerably from another but no matter what the stage of life, illness and disability has a profound affect on family systems. For example, if chronic illness enters the family in a child who has not achieved independent living skills, it has a different impact than if it occurred later in the child's life. If a certain level of success is achieved at a career that requires skills that cannot be maintained, it may have a different effect on the individual and the family than if it occurred at the end of the career or before that particular career had been selected. Rolland (l993) suggests that families need support in establishing "beliefs that sustain hope and empower, instead of those that foster blame, shame, or guilt". Independence and an ability to maintain optimal functioning within the parameters of the illness needs to be fostered. Furthermore, to avoid hostile imbalances in power and control, he identifies the need for families to see health problems as couple or family problems. Serious chronic illness can create a reconstruction of the past to find meaning for the future. People who have remission from serious illness can achieve a much greater meaning for each life event. From this powerful experience of vulnerability can be opportunity for the strengthening of marital bonds, emotional intimacy, deep expressions of caring and commitment, opening communications and increasing trust (Chekryn, l984). The disruption in the family that occurs when chronic illness enters the system may contribute to positive changes. Family members can develop new and better ways to interact with one another.
Chronic Illness And Children
Bronchial asthma, juvenile diabetes, leukemia and other cancers are among the more serious chronic and debilitating diseases that affect children and young adults. While once fatal, as a result of medical technology and effective pharmacology, children often live with these illnesses and their related problems for the whole of their lives. The pre-conceived notion about a chronic illness has implications for a family's ability to cope and adjust. Marteau & Johnston (l986), in their study of parents with children who have chronic diseases, found that parents rated diseases that their own children had as less serious than those of other children. Moreover, there were less negative feelings about a health problem that they were living with than one that their child did not have. This ability of the family to see others' problems as worse than their own tends to increase their ability to cope. In early childhood, the parent child relationship can be interfered with by long in-patient separations where the child's needs are met by the doctors or nurses. These have implications in the maintanence of the family hierarchy where there are physical disabilitiesthat may interfere with attempts at independence, children's self confidence may be compromised. Over-compensating parents may inhibit their child's developmental task mastery or the child can become rebellious in an attempt to push out the boundaries. The peer system in later childhood and early adolescence provides a yardstick by which children measure themselves and develop their self image. If a child has a chronic illness at this life cycle stage, peer relationships may become problematic. Peers can be cruel and may make it more difficult for the child to develop a social network, especially if the disabilities are severely restricting. When this happens, the family may overcompensate and become strongly protective of the child, meeting more of the child's needs than are necessary.
This is a particularly crucial and difficult time for families, as children with chronic illness attempt to negotiate adolescence through close friendships and personal values that are different from their families. Sometimes the withdrawal and loneliness experienced by an ill child results in anger and self recrimination. If the family has been vested in maintaining the adolescent's health without encouraging their maximum input, adolescent rebellion may be expressed in refusal of treatment or medication. When the day to day activities of a family are adjusted by an ill child's needs, other family members especially other siblings may become angry and resentful at the same time as they eperience guilt for any attention they do receive. Wilson-Pessano & McNabb (l989) found that the diagnosed child's care often took away from the needs or restricted the other children in the family.
Siblings in a family with an ill child adapted best when schedules, visits, and vacations, were adjusted to the total family's needs wherever possible rather than entirely to the diagnosed child's. When sibling's identities and importance in the family are supported and appreciated, less resentment and anger was felt. Where a family's encouragement in maintaining an ill child's involvement in his or her own care and decision making (where developmentally appropriate), the child's confidence and coping ability are maximized. Shapiro's (l986) research looked at maternal influences on families with chronically ill children and found that a mother's ability to adjust correlated strongly to overall family adaptation. Where mothers were depressed, siblings and other family members had negative feelings toward the ill child. Moreover, when families are unable to express their frustrations, fears, and angers, the family's ability to accommodate to the changes, was weakened. The interactional patterns, communication and feelings of the entire family unit are important therapeutic material (Minuchin, Rosman & Baker, l978). The resources external to the family system (i.e., financial, childcare, etc.) can support or weaken the stability of the family and its ability to accommodate to the illness. Helping families with the multitude of support services they might need to survive a serious childhood illness requires a multi-systemic intervention.
Less explored in the literature are the problems young children face when a parent is seriously ill. The separation and the fragility of the diagnosed parent may result in feelings of insecurity in the child. The protective environment of the family seems compromised when attention is placed on the ill parent. Temporary caregivers may not set appropriate boundaries so that children may feel particularly vulnerable. Children may feel excluded from the family interactions especially when they are given little or no explanation for the changes in the system or about their parent's health status. There is more than one case where the parent of a young child was taken to the hospital where s/he died and the child was given no explanation whatsoever, other than "Mommy /Daddy went to heaven." Later in therapy sessions, the adult explores the anger the child may have experienced from feelings of abandonment. As children reach adolescence, they may be expected to become the caregivers of their ill parents or siblings even during acute phases of the illness. Their caregiving may inhibit their opportunities for social development and peer relationships. Children, like adults, may feel angry with their ill parent, or ill sibling, sometimes secretly wishing them dead. These secret feelings need to be expressed and resolved to alleviate the guilt that often accompanies them or the reactions to grief they experience if the loved one dies .
Chronic Illness in Adults
When serious chronic illness emerges in adulthood, it can occur in the primary family or in elderly parents. When it occurs in early adulthood it may interfere with people's ability to marry, have children, or become successful in their careers. In middle adulthood, illness can be perceived as disrupting the family and work systems. Mid-life is the time when major financial and other responsibilities for young children are completed. People are established in their roles and couples are often readying themselves for their retirement in good health. Plans that were put off for some time in the future seem close at hand, if not in place. Couples in mid-life are always aware of the potential for illness but their life scripts have its occurrence put off for older age. With recent sophisticated medical technology, a first acute attack of an illness (cancer, heart attack) rarely ends in death. A couple will often have an opportunity to live for several, if not many, years with some quality of life. The quality of life is sometimes associated with their ability to change their definition of themselves to accommodate for the changes in their physical ability. Their quality of life is to some extent also dependent upon how their finances cover their medical and caregiving needs. Caregiving can compromise their definitions of each other.
Changing from an intimate couple relationship to a caregiving and care-receiving one is a difficult task for couples. If the spousal relationship is compromised by some loss of ability to do basic hygiene tasks , it may upset sexual and social boundaries. For example, in the case of sexuality, spouse caregivers of partners with dementia or Alzheimer's disease have reported finding particular distress with partners who make sexual overtures to them yet do not remember who they are or that they have participated at all (Litz, 1990). When the sexual intimacy of a relationship is changed by an illness, the couple or the caregiver may have to redefine their relationship from lovers to companions. Caregiving may also change family's roles. For example, when there is a loss of control over body functions and the caregiving partner is responsible for diaper changing and dressing responsibilities, the marital relationship may be perceived as being replaced by a parent-child dynamic. The ill person becomes ashamed of his or her inabilities, may withdraw or react angrily and/or may become despondent. Finding new meanings for accommodations to the relationship must be made in the context of communication between the partners. While dependency in physical needs may occur, the therapist can assist the partners to elicit maximum participation from the sick partner in family decisions and in any other ways that are possible. Encouraging participation of the ill spouse to the fullest extent throughout the course of the illness maximizes the quality of the relationship.
Gender factors have been known to play important parts in how care is given (Brok, l992; Gwyther, l990; Vinokur, l990). Because of differing socialization, women tend to accept caregiving roles more readily than do men . Studies on post cardiac incidents, indicate that women are better able to provide environments for their husbands to rest and recover because they have generally been responsible for the family chores (Badger, 1990) . On the other hand, men tend to seek caregiving or housekeeping assistance from others when their wives are recuperating from acute illnesses. In less acute cases like Alzheimer's Disease, the caregiving responsibilities tend to be transferred over time (Gwyther, l990) . The caregivers most frequently sought are adult daughters although the healthcare system does provide some nursing and home health aide assistance, most often by women. Caregiving tends to isolate people and increases the caregivers own risk for illness. The status of a mid-life couple's social system in terms of other experiences with illness can affect their quality of life, if and when one member becomes chronically ill. If others in their peer group have had similar experiences, adjustment and support systems may be available. If adult children are close by, they may provide a replacement social support network. The least overall disruption in social activities or family gatherings, the easier the adaptation. Families can be encouraged to include the ill member in social situations wherever possible and discouraged from taking over all of the sick person's responsibilities.
In the case where these family and friend support networks are not available, medically based peer groups (Heart clubs, Partners of People with Parkinson's Disease, etc.) offer a setting for families to re-establish themselves. These groups often provide a forum for the establishing of new friendships for both partners. By providing psycho-education about these support groups, a therapist or physician can assist the family to minimize their loneliness and isolation.
Chronic Illness in The Elderly
Chronic illness has often been defined as the illness of old age. It is also believed that if one lives long enough, one is expected to encounter a chronic illness, thus, leading individuals to assume that they will someday be ill. It is estimated that 85% of the elderly population in this country have a chronic illness, about half of those result in serious physical limitations (Schienle, l894) and yet only about 5% of the population live in nursing homes (Stone, l987) .
The life situation, experiences with loss, socio-economics and support systems of older people is often directly related to their stage of old age (65-75; 75-85; 85+) and their ability to cope with illness. Belief systems about aging often affect the way families and the healthcare system respond to chronic illness in this later stage of life. If illness is defined as an anticipated, expected component of advancing age and elderly people are not expected to be able to care for themselves, then their care may be taken over by family members or the health system. If they themselves share this notion, they may relinquish themselves to the caregiving situation. Comments like "I'm old" are often synonymous with "I'm feeble" or "unable". These self determinations may result in self fulfilling prophecies that are often encouraged by well meaning health care providers or children who become parents to their elderly parents.
Furthermore, if it is acceptable for elderly persons to be unable to care for themselves and regain positions of health after a serious illness, then they may not be encouraged to do so. Yet, many older people do not succumb to these definitions and fight hard to maintain there independence and self sufficiency. They recover and refuse care, sometimes to their families distress. The family's definition of itself as caregiver of its elderly members determines its willingness to give care, the style of caregiving and the ensuing effect. The caregiving needs of the elderly may be provided by a spouse, siblings or children. In long term relationships, spouses usually have a vision about caring for one another in old age and are most comfortable when they can carry these out. Their scripts incorporate "till death do us part". Oftentimes, children interfere with these efforts in fear that the well parent's health is being irrevocably compromised. This interference may disrupt the lifetime promise and the well spouse caregiver responds to family pressure by giving up the role or keeping the family at a distance.
Older spouses who give up responsibilities often feel that they have deserted their ill spouse and may become depressed and withdrawn. Other times, the well spouse caregiver continues the care, eventhough it may compromise their own health. In some cases, spousal relationships were first entered into during this later life period and the role of caregiver and the expectations of families may already be imbalanced as their life scripts differ. Boundaries between the "new" well spouse and the birth of children or other relatives of the ill spouse often need to be established when serious illness occurs. Who makes the decisions, who does the caregiving and where it will occur are problems that need to be resolved. Reconstituted families can become engaged in inevitable power struggles as they protect "their own." Environments that support older persons belief systems and independent decision making wherever possible should be encouraged. Often a couple has never expressed their feelings or their fears to one another about who will die first, or who will care for whom has never been expressed. These are difficult times for couples.
The Extended Family
In the case of children as caregivers, the extended family's proximity and responsibilities to their primary family may also influence how needs are met. Family of origin belief systems about what responsibilities adult children are "supposed" to have; how the different genders determine who does what; under what circumstances people should be institutionalized have implications to the delivery of care. The effects of caregiving an elderly parent, may be profound on the family of the caregiver (spouse and children) especially when the ill parent comes to live with their child's family. Many marital relationships have deteriorated in the process of caregiving an elderly parent especially when the caregiving couple does not agree to the extent of responsibility or involvement.
General Caregiving Issues
Fairly recently, changes in hospital payment systems to systems of Diagnostic Related Groups (DRG) or managed care programs, has resulted in financial incentives for hospitals and medical personnel to release people in the shortest possible time. This has dramatically changed the face of caregiving. Professional home health care has emerged, along with the need for families to make provisions for its sick members more immediately. In these circumstances, people outside the family system invade the system constantly. Some actually enmesh with the system itself. Socio-cultural factors such as extended family members living all over the country, reconstituted family systems, women in the workforce, and other such considerations have complicated the system further, making it more reliant on out-patient care. Yet, caregiving still remains a family issue. Because of these changes in medical payment systems, changes in family proximity and the aging of the population, recent research has been devoted to alternatives to the giving of care. Historically, care of infirmed people was the responsibility of the family, and where no family existed, the religious institutions. In families, men were responsible for the money to pay for the health needs of their ill and women for the hands on care. Caregiving has several meanings; love and intimacy, forgiveness, proving one's maturity; fulfilling obligations, and many others. Caregivers experience enormous frustration and sometimes "irrational anger, ambivalence, death wishes or escape fantasies" (Rolland, l993) . These intense feelings can result in distancing and guilt by the caregiver. Directing the caregivers intense, explosive frustrations at the illness rather than at the ill partner can diminish the guilt and bring the family closer together.
Summary and Conclusions
Historically, the primary care doctor in this country was a long term friend of the family, lived in the neighborhood, and was an integral part of the social systems in which a family functioned. This trusted person had almost exclusive rights to the diagnosis and care of people who became ill in his practice (and it was usually a man). He engineered or directed care which went far beyond medical treatment approaches, involved many family considerations and when the illness was long or serious the family often deemed him analogous to the "father," This model of treatment for people with illness rarely exists any longer. Medical personnel come in and out of family systems and play several different roles at different times. They rarely know much about the individual or the family system. In addition, acceptance of and understanding of ethnic and culturally diverse ways of using or not using the health care system and the ways families care for their ill has also changed dramatically in this country. Yet, the support systems have not yet accommodated for these changes. Chronic illness is not always easily diagnosed and treatments are complicated and often arduous, sometimes beyond the families comprehensibility. Serious illnesses poses unmentionable threats of loss to family systems and their complexity results in imbalances in relationships that may change the player's roles, intimacy, boundaries, and life scripts. A bio-psycho-social approach to helping families with chronic illness requires that therapists and medical practitioners create a new system of functioning with each other and the family. As Rolland (l993) so aptly put it, " therapists and couples need to understand the beliefs and multigenerational legacies that guide their constructions of meanings about health problems and their relationship to caregiving systems. Beliefs about normality, mind-body relationship and control, what caused an illness or what can affect its course, meanings or narratives developed around a health problem, and cultural/ethnic or gender-related beliefs are particularly significant" (p.15). They need also to begin to understand the medical progression and implications of the illness itself. Medical practitioners need to embrace families in their treatment of illness and expand their perspective from an individual medical model to a social systemic model. In this arena, families can begin to address the changes that must inevitably take place within the context of an illness. Changes that support the interpersonal relationships within the family, sustain intimacy and communication, create hope and foster coping in these families.
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