the social construction of anticipatory grief

Pergamon 0277-9536(95)00447-5

Soc. Sci. Med. Vol. 43, No. 9, pp. 1349-1358, 1996 Copyright © 1996 Elsevier Science Ltd

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THE SOCIAL CONSTRUCTION OF ANTICIPATORY GRIEF

G R A H A M FULTON, ' CHRIS MADDEN 2 and VICTOR MINICHIELLO' 'Department of Health Studies, University of New England, Armidale, New South Wales 2351, Australia and 2Sexual Health Research Group, School of Behavioural Health Sciences, La Trobe University,

Bundoora, Victoria 3083, Australia

Abstract--As medical technology prolongs life and facilitates the early diagnosis of terminal illnesses such as AIDS, the concept of anticipatory grief requires further scrutiny. The original concept of anticipatory grief has become widely accepted. This paper, however, argues that the uncritical acceptance of this concept rests primarily on the authority of the biomedical model, which has focused analysis on the predictable symptomatology of the grief process, integrating this understanding into health care. This paper provides a critical review of the concept of anticipatory grief, highlighting conceptual shifts which are required if the concept is to be relevant to the subjective experiences of people who are confronted with life-threatening illness. The paper discusses the relevance of understanding the conceptual confusion which exists in the literature between "anticipatory grief' and "forewarning of loss". It is argued that grief may be the response to a loss of meaning, and that the psychological process of adjustment to loss requires individuals to engage in the reconstitution of purpose and meaning in their lives. Distinguishing between what is being expressed for past and present losses and what responses occur when individuals focus on various aspects of their future may shed light on some of the inconsistent and contradictory findings surrounding research on anticipatory grief. Copyright © 1996 Elsevier Science Ltd

Key words--anticipatory grief, social construction, forewarning of loss, bereavement

INTRODUCTION

The general grief literature suggests that individuals confronted with the expectation that they will encounter a significant loss engage in "anticipatory grief". That is, they begin the grieving process in anticipation of that event. It is widely assumed that anticipatory grief is a positive adaptive response to impending loss because "it provides a person with an opportunity to rehearse the bereaved role and begin working through the profound changes that typically accompany loss, thereby mitigating the trauma associated with actual bereavement" [1]. As a consequence of this belief, many professionals have advocated the development of interventions during a terminal illness to facilitate "appropriate" grieving in anticipation of the impending loss. However, anticipatory grief has been accepted as a valid clinical phenomenon despite its limited conceptual and empirical underpinnings [1] and the accumulation of inconsistent information concerning whether the effects of anticipatory grief are benign, adaptive, or emotionally harmful [2].

This paper will show that the original concept of anticipatory grief was developed emphasising knowledge gained from research based on the biomedical model rather than other models from the social sciences. Through empirical work grounded in the biomedical model, the concept became incorporated into the institution of health care. As a consequence, information about the concept became socially objectivated as primary knowledge. Furthermore, in

becoming part of the body of generally valid truths about reality for health care professionals its existence was no longer questioned. As a result, the focus of empirical work has been directed at attempting to identify the effects of experiencing anticipatory grief with the aim of developing interventions to help maintain the grief response within what Welch [3] describes as normal and masterable boundaries. It will also be shown that failure to distinguish between what is being expressed for past and present losses and responses that occur when individuals focus on various aspects of their future has inhibited the development of alternative explanations for reactions that accompany the awareness of impending loss. The paper will suggest that attachment theory, in emphasising anxiety about separation and the generalised expressions of fear about the future rather than anticipatory grief, makes a significant contribution to the understanding of individuals' responses to an anticipated loss.

THE SOCIAL CONSTRUCTION OF MEDICAL KNOWLEDGE

Social constructionist theory posits that reality is constructed through human action and does not exist independently of it; the world, as a meaningful reality, is constructed through human interpretative activity. The general implications of using this approach in investigations in the health field have been outlined elsewhere [4]. For the purpose of this discussion it is important to reiterate the most

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1350 Graham Fulton et al.

relevant implication, namely that health, illness, and medical care can be viewed as social phenomena; that is, as categories constructed by society, or an institution within society, to define and give meaning to certain classes of events [4]. Culturally specific values, norms, and shared rules of interpretation dictate whether or not a particular experience or behaviour, within the health field, is viewed by members of a society as a sign or symptom of illness. Although the same biological processes associated with disease might be observed in different cultures the specification of behaviours as signs of illness will be given different meanings. Within Western societies the distinction between signs and their meaning as disease is, in part, a difference between health professionals' definition of patient problems and the actual experience of patients [4].

Berger and Luckman [5] have argued that what is taken for granted as knowledge within a social institution comes to be coextensive with the knowable or provides a framework within which anything not known will come to be known in the future. For example, modern Western scientific medical theory and practice is dominated by the biomedical model [6]. This approach to medicine is based on, and greatly influenced by, concepts, methods, and principles of the biological sciences. Also, its practitioners have developed a self-image that reflects a view of medicine as a discipline that has adopted the rationality of the scientific method as well as the scientist's values of objectivity and neutrality [4]. In providing a dominant framework for research, the biomedical model influences not only the understanding of current knowledge within the institution of health care but also how future knowledge will develop.

The biomedical model is based on the following fundamental assumptions. Firstly, disease is defined as deviance from normal biological functioning. Secondly, the doctrine of specific aetiology. Thirdly, the universality of a disease taxonomy. Finally, the scientific neutrality of medicine [4]. These underlying assumptions influence both the practice of medicine, and health care generally, and the development of scientific medicine. In addition, the linguistic basis of biomedical knowledge influences the way in which scientific medicine objectifies reality within the institution of health care. As a set of categories used to both filter and construct experience, modern scientific medicine predisposes health care professionals, individuals, and the community, to notice certain features of life and to describe them with a special vocabulary [7]. Terms such as "shock", "stress", "premenstrual tension", and "depression" both organise and colour individuals' experiences of themselves. The biomedical model also influences the ways individuals with an illness are perceived. Furthermore, how an individual with an illness is apprehended structures their treatment, status, their self-understanding, and their response to the complex

interaction of social and biological forces that are labelled disease [8, 9].

Social constructionist theory also proposes that reactions to specific events follow from people's ideas or concepts held about those events and from interpretations placed on them. From this assumption it can be argued that particular "social constructions" originate when an unprecedented event occurs and meanings are attached to it on the basis of ideas, beliefs, knowledge and experience associated with similar events, or ideas constructed about the new event. For example, using the concept of the "Good Death" Kellehear [10] traced the development of the moral and social ideas for dying behaviour. In examining the social interactions between the individual who is aware that he or she is dying and the central social institutions of the wider society, Kellehear identified socially defined sets of expectations and exchanges that individuals feel obliged to fulfil. Common features in the overall social experience of dying include the individual developing an awareness of their own dying, engaging in social adjustments and personal preparations involving intimate relationships, undertaking public preparation in the form of finalising wills and funeral arrangements, relinquishing formal work duties and responsibilities and making formal or informal farewells to friends and family. Kellebear and Fook [11] also suggested that it is a commonly held professional and community view that individuals' failure to engage in "proper" preparation for their death suggested "denying, careless or maladaptive behaviour". Rather than indicating psychological maladjustment, individual differences in dying behaviour might be understandable partly, at least, in terms of social reasons [11]. This paper will examine an aspect of dying behaviour, anticipatory grief, and argue that the development of this concept has been influenced by the process of social construction.

THE DEVELOPMENT OF ANTICIPATORY GRIEF

The concept of anticipatory grief was introduced by Lindemann [12] in an apparently independent study of individuals' responses to routine death. However, there were common elements between this sample and a sample from a previous study. The initial work was conducted on a group of people recovering from personal injuries received during the Coconut Grove nightclub disaster. Although it is not clear precisely who was included, some of these survivors of the disaster formed a part of the sample for later work on identifying normal grief.

The original work undertaken by Cobb and Lindemann [13] was in response to requests for psychiatric assistance with survivors of the Coconut Grove nightclub fire. Its focus was on individuals' emotional adjustment to the disaster and all its implications, namely, "disfigurement, lasting disabil- ity, loss of work, bereavement, and disturbed social

The social construction

situations" [I 3]. The services of clinicians (Cobb and Lindernann) were sought when the response of some family members to the discovery of a body had attained "the proportions of a major psychiatric condition and needed trained intervention" [13]. All the victims reported in the article experienced both personal injuries during the fire and the death of a close family member, or significant friend, in the disaster. In some cases the survivors were not informed of the death of significant others until several days after the fire. However, despite these physical and emotional injuries, the fact that at least fourteen presented with "neuropsychiatric problems" and the recovery of seven people was complicated by "severe grief", it was claimed that a distinct syndrome, common to all, was identified. This was categorised as an acute grief reaction [13]. Notwith- standing the identification of this grief reaction, the article was not primarily about grief per se but some of the neuropsychiatric abnormalities which occurred in a "disaster ward". The article's conclusions were concerned with identifying the psychiatrist's role as a member of a disaster team. The activities reported in the article were based on anecdotal evidence collected during practical experience on the disaster ward of a hospital. This experience was to influence later work on family members' responses to routine death.

In a second study, Lindemann [12] combined the Coconut Grove disaster sample with three other groups, namely psychoneurotic patients who lost a relative during the course of treatment, relatives of patients who died in the hospital, and relatives of members of the armed forces. The implication of this later article [12] was that this composite group formed the basis of an independent study. No mention was made of the original psychiatric referrals of the Coconut Grove component of the second sample or whether members of the other groups were referred for prior psychiatric conditions. These four groups were presented simply as experiencing "normal grief" or its variations.

In essence, the purpose of the second article was to define and make meaning of people's reactions to the death of a close family member. The focus was on the reactions to death rather than the circumstances in which it occurred. It was implied that all those involved in this study on normal grief were responding to a routine death. The brief outline of the methodology stated that the investigation was based on a series of psychiatric interviews. These interviews were subsequently analysed and the psychiatrist "avoided all suggestions and interpretations until the picture of symptomatology and spontaneous reaction tendencies of the patients had become clear from the records" [12]. However, the influence of the original study on the second piece of research is clearly evident in the form of the description of the normal grief syndrome's symptomatology. Apart from minor changes in tense and word placement the descriptions are identical. Furthermore, in the original article a

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case history was used to illustrate the point that a psychotic episode after the disaster could be traced to a previous history of maladjustment in times of stress. In the second article, however, this same case history was used to represent "agitated depression"--a distortion of normal grief in response to a routine death. Yet no reference was made to this person's history of maladjustment in times of stress.

It was with this focus on death in the main body of the article that attention was turned, in the final paragraph, to making meaning of returning soldiers' experiences. Several instances were reported where soldiers returned from the battle front to find that their wife no longer loved them and demanded an immediate divorce [12]. This was the unprecedented event that required explanation. Based on previous knowledge and ideas about separation through actual death, Lindemann attempted to make meaning of this new event. It was proposed that this desire for divorce was the direct result of the threat of death during wartime separation. Lindemann concluded that:

the patient is so concerned with her adjustment after the potential death of father or son that she goes through all the phases of grief--depression, heightened preoccupation with the departed, a review of all the forms of death which might befall him, and anticipation of the modes of adjustment which might be necessitated by it [12] (p. 147) (emphasis added). Continuing the emphasis on death, it was further concluded that "while this reaction may well form a safeguard against the impact of a sudden death notice, it can turn out to be of a disadvantage at the occasion of reunion". It was argued that, in the face of an anticipated death, "apparently the grief work had been done so effectively that the patient has emancipated herself and the readjustment must now be directed towards new interaction" [12].

Although acknowledging that the effects of wartime separation had been previously reported by Rosenbaum [14], Lindemann omitted to discuss the implications of Rosenbaum's findings. Possible alternative reasons for a wife wanting to divorce her husband after separation were not considered [15]. Further problems with these initial conclusions have been documented elsewhere [16]. It appears that Lindemann's prior work on grief influenced his conclusions concerning anticipatory grief. Unfortu- nately, Lindemann limited his discussion of anticipatory grief to women facing the possible death of male family members on active military service. No indication was given as to whether soldiers facing the possibility of their own death in battle engaged in the same process. Lindemann restricted his application of anticipatory grief to wartime separation experiences and at no time examined the more certain prospect of loss associated with diagnosis of a terminal illness.

The conceptual and methodological weaknesses with anticipatory grief research have also been identified previously [1, 16-18]. However, despite these valid criticisms, the concept is still widely accepted by leading researchers, theorists and clinicians working in grief related areas [19]. Its durability is demonstrated by the existence of books


specifically about the concept [2, 20], the number of grief related articles [2, 18, 21-23] and its inclusion in the majority of grief-related texts. It is pertinent to examine why a concept that is a source of controversy [17], has limited conceptual and empirical underpinnings [1], has discrepancies in the supporting empirical evidence, in that its effects cannot be clearly demonstrated [2], is still widely regarded as a valid clinical phenomenon. Previous reviewers have pro- vided a number of reasons for the non-critical acceptance of the concept [1, 16]. However, from the social constructionist perspective an answer to this question lies in an examination of how knowledge, within the institution of health care, becomes socially objectivated as knowledge, and in particular knowledge about anticipatory grief.

DEVELOPMENT OF KNOWLEDGE IN HEALTH CARE

Research has become an increasingly important element of the division of labour within the social institution of health care. The knowledge produced by research influences the institution's objective reality. Consequently, research has become simul- taneously a vehicle for the development of special knowledge within the institution-based "sub-world" of health care as well as a major component of the process of objectivating this new knowledge, and a form of secondary socialisation. Some of the rich body of meanings developed within health care are legitimated, sustained and transmitted to fellow members by reports, journal articles, conference papers and education programs arising from, or based on, research findings. The established selection process of articles for publication or conference presentation also has a significant influence on what knowledge is transmitted. Shilts, for example, has outlined the effects the peer review process had on early knowledge and information concerning the cause and spread of what was then referred to as "Gay Related Immune Deficiency" [24].

The type of research being produced within health care reflects the disciplinary background of the producers [6]. The empirical development of anticipatory grief has been influenced by the fact that research has developed within specific Western societies. Its development has also been influenced by a medical orientation in the grief literature. This extensive literature predominantly consists of ac- counts of the response to the death of a close family member, namely, of widows, widowers, and bereaved parents [25]. Perusal of this literature reveals that, despite a lack of agreed upon definitions and criteria which are operationally valid for many aspects of the grief process and its outcomes [26-27], the most common understanding of grief is as a private emotional experience with a predictable symptomatology. Grief is viewed substantially in terms of the intrapsychic attributes of the individual in conjunction with the effects of the timing and cause of death

and certain demographic variables [25]. Grief is frequently viewed, both in serious scholarly work and popular discourses, as if it were a non-fatal disease. Contained within the assumption that grief has a normal course, or a set of expected symptoms which progress in a generally predictable manner, is the belief that it has a biological grounding [28].

Despite the rapid growth in grief-related research, the pioneering work of a small number of individuals forms the foundation for much of the later development in the fields of dying, death, bereavement, and grief. It has been highlighted elsewhere [27] that articles in these fields are regularly introduced with reference to the work of Freud [29] and Lindemann [12]. However, it is of interest to note that, in his article on Mourning and Melancholia, Freud was less preoccupied with understanding grief as a psychological process in its own right, than with ~xamining the manifestation of clinical depression [30]. No mention of the concept of anticipatory grief p e r se was made in Freud's writings. The fact that the conclusions of Lindemann's paper did not undergo critical evaluation--at least not for many years--is due to its being construed as a "classic". Conse- quently, although Lindemann's research would not satisfy current methodological standards [31J---being based on anecdotal material [32,33], and not providing operational criteria to define normal, pathological or anticipatory grief [19]--Lindemann's arguments and conclusions concerning anticipatory grief were, and still are, widely accepted. Further- more, available data in the area of grief studies frequently do not extend sufficiently to support the proposed theoretical formulations [27, 34]. One of the noticeable characteristics of work relating to grief is the extent to which theories rest on appeal to authority rather than evidence [34]. According to Shackleton [34], the profound influence of Freud's work, and later the work of Lindemann, has been transmitted in this way. Rather than explicitly evaluating the work of these pioneers, later theorists and researchers, almost without exception, accepted the conclusions of Freud and Lindemann as though they were established fact [34]. A review of the empirical literature on anticipatory grief reveals that the factual nature of the concept has been rarely questioned.

CONCEPTUAL CONFUSION

The general acceptance of Lindemann's [12] conclusions about anticipatory grief is evidenced, within the literature, in the lack of conceptual analysis and of a generally accepted definition. As a result of methodological weakness in the empirical work concerning anticipatory grief this conceptual confusion has been perpetuated. Frequently, the research literature contains definitions of anticipatory grief in terms of either the length of illness or the amount of forewarning [23]. However, the results of

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these studies are discussed in terms of the existence of a single concept--anticipatory grief. It can be argued that this conceptual confusion has also arisen because of the focus of related empirical work.

The critical question guiding empirical work has been "not whether anticipatory grief exists but whether it is psychologically useful in mitigating the post-mortem grief of the survivor" [35]. This statement reflected the continuing confidence in the validity of the concept and a firm belief that future empirical research should be directed toward learning more about its implications for the mental and physical health of the survivor-to-be [36]. More recent support for this approach is evidenced in the claim that the semantic argument over the terminology of the experience is irrelevant to its existence and to the necessity of providing assistance [2]. However, this approach confuses the two very different processes of identifying and clarifying a phenomenon and developing an accurate nomenclature to describe that event.

The implicit assumption embodied in the approach to anticipatory grief research has been that understanding how post-mortem grief can be decreased is more important than developing a clear conceptual understanding of what it is that occurs to individuals either facing their own imminent death or the inevitable death of a close family member. This approach to empirical research reflects the readiness with which health carers respond to the value that it is important to mitigate emotionally painful experiences surrounding death and loss [1] . More significantly, it ignores the importance, for the growth of scientific knowledge, of solving empirical problems and what Laudan [37] refers to as the higher order conceptual problems concerning the well- foundedness of conceptual structures which have been devised to answer empirical questions.

This lack of conceptual investigation, and the medical model's emphasis on influencing outcomes, has resulted in considerable confusion primarily between the different concepts of "anticipatory grief' and "forewarning of loss" [1, 2, 16, 17]. In reviewing empirical studies of anticipatory grief, Fulton and Gottesman [I 7] grouped the research into "children" and "adult" studies. The use of this classification system illustrates a shift in the perspective taken by researchers discussing the concept of anticipatory grief. Early studies, conducted during the terminal illness experience of children, focussed on parental responses to their child's potential death. As such, this research related to a situation best described as "forewarning of loss". More recent studies, primarily conducted after the death of a partner, parent or adult sibling, labelled all discussions of forewarning of loss as investigations into anticipatory grief [17]. The classification system used by Fulton and Gottesman also illustrates the changes in terminology arising from a broadening in scope of the concept's definition and meaning. The earlier "children"

studies perceived anticipatory grief as one of the potential coping mechanisms of parents. On the other hand, the later "adult" studies, using forewarning of loss as a basis, assumed the existence of anticipatory grief and focussed on an examination of the post-mortem value of anticipatory grief [17]. Thus, anticipatory grief was conceptualised as having immediate positive effects on current coping as well as providing long-term beneficial effects on the adaptation of the individual after the death of the family member. In this way, the current usage of the concept, with these adaptive coping connotations, represents a marked deviation from the original concept.

A further issue that has been largely overlooked in anticipatory grief research design is the inclusion of the individuals themselves who are dying, as subjects of the research. Although discussions concerning anticipatory grief frequently include people who are dying [1] relatively little research has been undertaken with the terminally ill person themselves [38, 39]. This would appear to be in response to the widely held belief among many health care professionals and researchers that it is potentially unethical to conduct research with an individual who is in the terminal period of their life [40-42].

Some researchers have rejected the concept of anticipatory grief [4347]. Rando, in a comprehensive article, pointed out that the term anticipatory grief was a misnomer because it suggested that grieving is solely for anticipated losses as opposed to past and present losses. To some people, "grief ' implies complete decathexis from the dying person. It has also been argued that loss can also occur in relation to the individual's hopes and expectations associated with that person in the future [2]. Rando [2] further stated that what occurred during the period of forewarning of loss was a more complex and multidimensional set of processes than had been previously recognised. Attempting to clarify the concept, Rando [2] offered an alternative all-encompassing definition of anticipatory grief as:

the phenomenon encompassing the processes of mourning, coping, interaction, planning, and psychosocial reorganiza- tion that are stimulated and begun in part in response to the awareness of the impending loss of a loved one and the recognition of associated losses in the past, present, andfuture [2] (p. 24). However, by including coping, interaction, planning, psychosocial reorganisation and by proposing two perspectives, three time foci, and three classes of variables influencing anticipatory grief, Rando was no longer simply talking about grief as it has been more commonly defined, that is, as the response to a loss.

There are a number of ways that Rando's [2] proposals perpetuate the conceptual confusion that abounds in the anticipatory grief literature. Firstly, by suggesting the problem is semantic rather than acknowledging the inherent conceptual difficulties. Secondly, by continuing to label this multidimensional experience as "anticipatory grief', after cogently arguing that it is a misnomer. Finally, and


most importantly, by confusing the expression of grief with the context in which it occurs. It appears that what Rando [2] was attempting to highlight was the fact that living with the knowledge of anticipated death is not simply a unidimensional experience of grief for future losses but, instead, occurs within the context of the complex amalgam of all the psychological, social, physical, and spiritual aspects of daily living. This argument is supported by other researchers who have indicated that grief must be seen in the context of all the other threads in the fabric of a person's life rather than simply perceiving it to be the major factor [4, 10, 48, 49].

A specific attempt has been made at developing a tool for the measurement of anticipatory grief [50]. As with other research on the concept of anticipatory grief, this research was also influenced by the previous social construction of the concept. Conse- quently, it failed to address the issues commonly influencing prior research. For example, it followed the customary course of interviewing individuals after the death of their spouse. Thus, it continued to ignore the previously issued warning that the "recall of complex affectively laden events is more construction than reproduction" [51, 52]. Furthermore, the socially constructed knowledge concerning anticipatory grief was drawn on in the development of the instrument. As a result some of the questions are somewhat confusing and appear to be more relevant to grief for losses already incurred rather than anticipated losses. For example, the question "Attempt to create a picture of your husband in your mind" implies that he is no longer present. Alternatively, the spouse responding positively to this item may be thinking of her attempts to recall his appearance prior to the illness. In this case she would be responding to an actual loss rather than an anticipated loss. It also should be noted that the notion of "attempting" to conjure up the images of the loved one does not pick up accurately on what is often reported to occur with mental images (i.e. the person can sense that the images just occur without any attempt to invoke them--compare with obses- sional thoughts, etc).

RELEVANCE OF THE CONCEPT TO INDIVIDUAL EXPERIENCE

As has been detailed above, the concept of anticipatory grief has been incorporated into the objective reality of health care. Despite the conceptual confusion, controversy and inconsistent information about its effects the concept has developed within the institution of health care, enabling professional health carers to make theoretical meaning of the experience of individuals expecting a significant loss in the future. In conjunction with their understanding of general grief theory, within a predominantly medical model framework, professional carets have developed and applied thera-

peutic interventions when individuals express symptoms that indicate their responses are outside "normal" limits. However, the basic assumptions of the biomedical model are so inextricably linked with the ways of thinking and working in medicine that health professionals tend to forget that it is but one of a number of conceptual models or ways of thinking about the world. The biomedical model is regularly treated as the only reality rather than viewed as one of the many representations of reality [4]. The development of self-help groups, in part, questions whether the objective reality of the biomedical model is always relevant to the subjective reality of the individual's actual experience.

Although limited financial and human resources within the health care industry are often cited as reasons for the development of self-help groups such as cancer support groups, peoi~le living with AIDS (PLWA) groups and bereavement groups, alternative arguments could be developed for their proliferation. Frequently members of such groups acknowledge that, although health care professionals do the best they can, their needs are not fully understood by professionals. Consequently, the primary aim of these groups is to provide support and understanding for individuals living with life circumstances about which health care professionals often only have a theoretical comprehension. Over time, these groups frequently develop their own "obJective" reality about the circumstances of their experiences. For example, some support groups develop as a repository of knowledge concerning alternative therapies. As such, not only does their objective reality differ markedly from that of professional health carers, but also they do not always adequately cater to the needs of all individuals whose reality of their illness differs from that of the institution of health care. Often such groups do not provide adequate support for individuals who may believe they are beyond any form of acute or alternative therapy and simply seek emotional support during the terminal period of their illness.

The situation is similar with AIDS related support groups. PLWA groups in Australia, for example, were developed to meet the needs of gay males who had seroconverted. However, as increasing numbers of people were being diagnosed as HIV + the objective reality of the initial groups was not always congruent with that of all other individuals. During a local seminar on living with AIDS, attended by the principle author, one participant stated that he left a support group because he was exasperated with the constant portrayal of living with AIDS as a "growth experience". His predominant experience had been one of constant illness, grieving for the death of many friends, his inability to work and maintain a normal lifestyle and the general drudgery of daily living rather than a spiritually enriching experience. Similarly, as increasing numbers of women began to be diagnosed as HIV + they found that the objective


reality of the men's support groups were not always relevant for the experiences of women. Consequently, specific groups for women living with AIDS were developed to meet the needs of an alternative reality of living with AIDS.

SOCIAL CONSTRUCTIONIST APPROACH T O PERCEPTIONS ABOUT THE FUTURE

Symbolic interaction theory suggests that grief is the response to loss of meaning [53-55]. For example, when a significant person dies, part of the survivor's "social context for understanding, organizing, vali- dating, and defining feeling, action, values, and priorities is removed" [55]. Rosenblatt suggests that one source of the feelings labelled "griel" is the loss of that part of the context used "to organize, define, validate, anchor, and provide meaning for their lives" [55]. Loss of someone who has been important in the defining of self and situation gives character to grief; it gives grief "qualities of searching for meaning, of uncertainty about one's self, uncertainty about what to make of what has happened, disorganization, confusion, and nonconfidence" [55]. In turn, the uncertainty that results from this experience leads individuals to search for alternative bases for defining both the situation and the self.

Marris [53] has argued that meaning is the crucial organising principle of human behaviour. By providing reasons, meaning makes sense for action. Any situation that impedes the individual's crucial motives for action is likely to result in bewilderment and a sense of futility. Furthermore, events which do not make sense in the context of the individual's life are particularly threatening. The trauma of loss is constituted by the collapse of compelling reasons to act. Therefore, grief is the response to loss of meaning. This suggests that it is not the actual person for whom one grieves but the loss of meaning associated with that person. Parkes' [56] comment that with the death of her husband a wife might lose "a sexual partner, companion, accountant, gardener, baby-minder, audience, bed-warmer, and so on" [56] (p. 27), depending on what the husband meant in the relationship, emphasises this point. It also suggests that the psychological process of adjustment to loss requires grieving individuals to engage in the reconstitution of purpose and meaning in their lives. In other words, individuals must engage in a search for new meaning [54].

This search for meaning provides a different perspective to the stage theory explanation of the expression "Why me?". Rather than an exclamation of anger [57] the comment may reflect the individual's need to make meaning of their life-threatening illness or bereavement experience. Individuals living through these experiences often question what the experience means to them personally; what is the meaning of life generally, and their life in particular. They must make sense of why some friends no longer

maintain previously close relationships. Some individuals are confronted with changing status in health, in meaningful relationships with close family members, their roles within society generally and in long held beliefs and values [10]. For example, the HIV/AIDS literature suggests that people living with AIDS face a number of adaptive tasks such as maintaining a healthy lifestyle [58, 59], dealing with reactions to stigmatising illness [59, 60] and coping with the cumulative psychological impact of multiple deaths within a small community [61].

Parkes [62] suggested that the self is socially constructed through the individual's "assumptive world". Individuals create their assumptive world from the total set of assumptions developed on the basis of their past experiences. Parkes also proposed that individuals' assumptive world is the only world known to them and includes everything that they know or think they know, together with their interpretation of the past and expectations and plans for the future. In response to major changes, the individual must restructure ways of perceiving the world and plans for living in it. These changes are designated as a gain or loss depending on the individual's evaluation of the outcome. Such change is classified as a loss if the individual assesses the outcome to be worse than their initial situation. Consequently, loss, as interpreted by the individual, requires a reworking of the individual's view of the self that will accommodate major changes in life circumstances. This is achieved by the individual's reconstruction of personal assumptions about the world. The resultant reviewing of redundant assumptions and restructuring of the assumptive world constitutes the emotionally painful process of "grief work" [62].

Parkes [56] also argues that, for the newly bereaved, reminiscences of the circumstances of the death "obtrude upon the mind much as anticipatory worrying preoccupies people who fear a possible misfortune". However, Parkes makes an important distinction between grief work and the concept of worry work proposed by Janis [63]; grief work is based on memory of an actual event that has occurred whereas worry work is based on anticipation of dreaded situations that have yet to occur. For example, an individual contemplating investing their life savings in the stock market in an effort to generate sufficient income for their retirement may worry about losing all their money in a future economic recession. This worry work has the effect of focussing attention on possible dangers and thus provides an opportunity to engage in appropriate planning [56]. Thus the individual may reach the ydecision to spread their income over a range of investments that offer greater security for less financial return. However, associated with a decision to invest in one high risk, high return project is a set of assumptions about a future that includes the benefits flowing from high financial


returns and that disasters occur to others rather than oneself. While the investment prospers the individual is likely to embellish their set of assumptions about their life in the future and to reconfirm their belief that disaster will not strike them. In the event of an economic slump resulting in the loss of their life savings Parkes [62] argues that the person must give up their previously held assumptions about the future and it is for the lost set of assumptions that the individual grieves rather than the future.

A similar situation occurs with individuals facing the knowledge of their impending death. Depending on the awareness context associated with the anticipated death [64], the individual is faced with a number of socially defined behaviours that are part of the dying role [10]. Along with changes that are clearly of a social nature [11] there are changes that result from the progress of the illness (e.g. health status, lifestyle, income) with which individuals and family members must cope. Simul- taneously, individuals have the opportunity to change their thoughts, expectations and set of assumptions about their future. Current literature concerning anticipatory grief implies that individuals begin to grieve for future losses prior to the actual occurrence of the loss. However, with the recognition that assumptions, plans or expectations about the future will not occur the individual may have to alter their currently held assumptive world and their individual meaning about life. Any such change that occurs does so in the present and not the future [65]. Whether the subsequent change in meaning triggers a grief reaction will be dependent on whether the individual construes the outcome as a gain or a loss [62]. Kellehear and Fook [11] suggest that individuals who do not engage in the professionally expected dying behaviour, such as discussing their awareness of dying or engaging in farewelling family and friends, may do so for purely social reasons rather than exhibiting psychological denial of the impending death. It has been suggested that the dramatic improvement which sometimes takes place in people with long-standing neurotic symptoms who discover they are about to die may result from these individuals perceiving death as the positive end to a fruitless struggle to master a life space perceived as too difficult or dangerous [62]. Similarly, those individuals with a life-threatening illness who maintain positive hopes, expectations or assumptons about the outcome of their treatment or illness may not have a reason to engage in a grieving process.

IMPLICATIONS FOR RESEARCH

The inconsistent results of prior research may have resulted from a failure to address the critical issue of distinguishing between grief that is being expressed

for past and present losses and whatever responses occur when individuals focus on various aspects of their future. Previous research has assumed that these time loci are of secondary importance to the emotional response exhibited. Furthermore, it as- sumes that this expressed response prior to an expected death is the anticipatory grief reaction which embodies typical phenomena of normal grief [19]. However, it has been argued that, where grief is concerned, rehearsal is no substitute for the actual event [45] and that grieving does not take place in advance [47].

The argument that grief can only occur after an event, which has been perceived by an individual as a loss, raises a number of important issues. What response do people living with a life-threatening illness, or the knowledge of their impending death, have when they contemplate their future? Are these responses the same for significant others such as partners, close friends and relatives? If these responses are different to normal grief reactions, is it appropriate, or necessary, to develop other thera- peutic interventions? Do responses change according to which aspect of their future is the focus of attention? How do individuals respond to thoughts about their illness progression? How do people respond to thoughts of dying? Are these responses different to thoughts about the actual nature of their death? How do people respond to thoughts concerning the absence of significant others after their death?

Parkes and Weiss [66] argue that for the well partner the impending death of the individual is experienced as a threat of injury and abandonment. The subsequent triggering of attachment feelings gives rise to an upsurge in need for the partner. Thus, in response to the anticipated unavailability of an attachment figure the individual responds with fear, particularly fear of being along [67]. Similarly, the individual facing their own impending death is faced with the situation that, although their partner, family or friends may be physically present during the illness, ultimately, they are alone in facing the experience of death. According to attachment theory this perceived absence of an attachment figure will magnify fear of a variety of situations [67]. There is no question that individuals may grieve for past and present losses (e.g. loss of friends, loss of health, loss of lifestyle, loss of work, loss of control, loss of independence). However, a recent study [68] shows that individuals living with a life-threatening illness focus on various aspects of their future (e.g. the effects of the illness, the progression of the illness, treatment procedures, the process of dying, the actual event of death, after death). Consequently, they experience a number of different fears. Some of these fears are directly linked with the known unavailability of attachment figures (e.g. fear of treatment-- where they are isolated from family and friends either because of the type of treatment or its availability at large treatment centres only rather than within local


communities, fear of having to go through the actual dying process alone). In turn, this leads some individuals to fear they will not be able to cope emotionally. It may also explain why some people join peer support groups. They may do so in the hope that they will not be alone during their illness experience. In the gay community where increasing numbers of trusted friends and companions are dying, and thus unavailabe to the individual who is ill, fear is an increasing experience for an expanding number of people. Frequently cited examples of fears for individuals with HIV are dying alone (without the company and support of significant friends), developing dementia and not being able to control their own affairs, physical deterioration and being unacceptable to other members of the gay community, and experiencing a lingering death [68].

In the light of inconsistent and contradictory findings concerning "anticipatory grief" and the argument that grieving does not take place in advance [47], there is a growing need to understand the experience of individuals facing their impending death and the experience of their significant others. This paper suggests that greater research effort needs to be invested into understanding the individual's response to thoughts about various aspects of their future while living with a life-threatening illness or the knowledge of their impending death. This requires that research projects using prospective designs be undertaken during the often emotionally and physically difficult period from diagnosis of a life-threatening illness to death, despite the "ethical" objections raised by many health care professionals [40-42]. To gain an adequate understanding of what occurs for individuals and their significant others during their experience of living with a life-threatening illness, future research also needs to incorporate projects that cross disciplinary boundaries. Not only does future research need to focus on the existence and degree of emotional response during this experience, but also on the various psychological and social factors that may trigger or influence such responses (e.g. the social and individual meanings of certain illnesses, the cultural and individual beliefs associated with grieving and the expression of emotions during the process of anticipating a death, the social and individual responses to transitions from conditions of remission to exacerbation, to potentially terminal, to definitely terminal). It is also important for research to examine how the future is conceptualised by individuals and professional health carers, the ways individuals make meaning of their experience, how that meaning differs from the objective reality of professional health carers, and what psychological, physical, social and spiritual issues influence individuals' perceptions. Conse0.u- tly, it is important for future research to utilise qualitative methodologies that allow respondents to define the situation in their own terms and categories, rather than structured interviews which frequently

reflect the interviewer's frame of reference and are based on the assumption that the terms used have shared meanings for both researchers and respondents [59, 69].

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