Sibling Loss

Joanna H. Fanos

• Publisher: Psychology Press
• Year: 2014
• Print ISBN: 9780805817775
• eBook ISBN: 9781317779926
• Topic: Psicologia
• Subtopic: Salute mentale in psicologia

Despite the rise of clinical interest in posttraumatic stress disorder and traumatic stress in children, there has been little attention paid to the impact of sibling death as a traumatic event. Although there is much evidence that children suffer long-lasting consequences of such trauma as divorce or the loss of a parent, the loss of a sibling has not been the topic of substantial clinical or research attention. The sibling relationship has only begun to receive research and theoretical attention. The complexities of the sibling bond as it changes and evolves over the life-span have only begun to be explored.

The death of a child has generally been considered one of the most stressful events encountered by families in our society. The chronicity of illnesses such as cystic fibrosis is in a sense new, an outgrowth of recent advances in medical treatment which have considerably extended the lives of children stricken with leukemia, cystic fibrosis, HIV-infection, diabetes, and others. This book explores the long-term consequences of chronic illness followed by the death of a sibling on adult adjustment. The illness and loss of the child will have a direct impact on the siblings, dependent upon their own capacity to give meaning to its occurrence and to mourn the loss effectively. In addition, the sibling's world will be inexorably shaped by the handling of the illness and loss by the parents.

Chapter 1

The Problem

Two charming little sisters were brought to see me, one very sick.

—Harry Schwachman, MD (1950)

This book explores the long-term consequences on adult adjustment of chronic illness followed by the death of a sibling. The illness and loss of the child will have a direct impact on the siblings, depending on their own capacity to give meaning to its occurrence and to mourn the loss effectively. In addition, the well sibling’s world is inexorably shaped by the parents’ handling of the illness and loss.

The death of a child has generally been considered to be one of the most stressful events encountered by families in our society (Futterman & Hoffman, 1973). The chronicity of illnesses such as cystic fibrosis (CF) is in a sense new, an outgrowth of recent advances in medical treatment that have considerably extended the lives of children stricken with leukemia, CF, diabetes, and the like.

The psychological literature is largely descriptive, focusing on the reactions of mothers, a captive research pool as they brought their children to the clinic for medical treatment. Much less is known of the impact on fathers, and even less on healthy siblings. Although there is a vast psychoanalytic literature on the childhood loss of a parent (see Miller, 1971, for an excellent review), the psychoanalytic literature on the effects of a child’s death is very limited. This is particularly surprising because there have been implications of sibling death in the etiology of schizophrenia (Blum & Rosenzweig, 1944; Rosenzweig, 1943). As Cain, Fast, and Erikson (1964) complained:

We have barely progressed beyond the time when lengthy, intensive psychiatric case studies could note in a passing sentence that “one of the patient’s siblings died when he was four” and omit any further reference to the event’s meaning to the patient. Similarly, current studies showing a sharp awareness of the complex reactions of parents to the death of a child may omit any mention of the impact of the death upon other family members. (pp. 741–742)

In the psychoanalytic literature on sibling death, rivalry-bred guilt has been the exclusive focus of theoretical interest since Freud (e.g., Berman, 1978). Although this theory may well explain Freud’s own reactions to the death of his younger brother Julius when Freud was 19 months old (Pollock, 1972), it remains mute before the myriad complex and longlasting psychological difficulties found by investigators such as Cain et al. (1964). As they pointed out at that time:

Our growing case material soon served to demonstrate the limitations of perhaps the one notion of any currency about the import of sibling death, namely, the concept that the primary if not exclusive pathological impact of a sibling’s death upon the surviving child is one of guilt over rivalry-bred hostile wishes which, through the early omnipotence of thought, are seen as having been fulfilled by and responsible for the sibling’s death. (p. 742)

Our focus on the loss of a chronically ill sibling offers us a unique and fertile opportunity for observation. We can begin, as it were, at the beginning, and gain some understanding into those effects that arise from the chronic strain of illness of the child apart from those that arise from failures at negotiating the task of mourning. Do the demands of living with a sick child set into motion processes that hinder adaptation to the new situational demands that arise following the death of the child? Are the pathological effects observed in some children related to the bereavement itself or to the prolonged absence of a depressed or overwhelmed parent from certain critical roles? Does the actual loss of the sibling represent only the loss of a competitive figure, or does it signify the loss of other possible roles as well?

STATEMENT OF THE PROBLEM

The aim of the study reported here is to examine the consequences on adults of growing up with a sibling who was chronically ill and ultimately died before adulthood. Although the severity of the impact has been noted in the literature (Cain et al., 1964), there has been little understanding of how exposure to chronic illness and death of a sibling generates these effects.

Some problems, I expect, would arise from the impact of the death itself. Effects would arise in two ways: directly, through the sibling’s own understanding of the nature of the death, largely dependent on his or her developmental level and capacity to interpret its cause and to mourn its occurrence; and indirectly, in that the capacity of the parents to mourn effectively and completely will dictate the ability of the parents to provide a healthy, nurturing environment for survivor siblings.

I would expect other problem areas to arise from the necessity of dealing with the chronic illness of the child. Although the death of the sibling may be traumatic for the surviving children, the reorganization that takes place within the family as it struggles to cope with the long years of the illness may be equally serious. I view the disease as initiating responses in advance of the ultimate death, particularly on the part of the parents, that create a developmental environment for the children that is far from a normal one. The withdrawal of emotional resources from the well sibling may have serious and adverse effects on adaptation.

THE DISEASE

Cystic fibrosis is the most common fatal genetic disease in the United States today. It is an inherited disease that affects the exocrine glands of the body. In CF, the mucus-producing glands secrete a thick, sticky mucus that tends to clog and block ducts, interfering with vital functions such as breathing and digestion. The basic defect in CF cells is faulty transport of sodium and chloride within epithelial cells, which line organs such as the lungs and pancreas, to their outer surfaces. In the United States in the mid-1990s, approximately 30,000 children and young adults are afflicted with the disease. About 1,300 new cases are diagnosed each year, generally by the time the child reaches age 3. Equally common among males and females, CF was long considered a disease fatal in childhood; however, research accomplishments have increased the life expectancy for a person with CF to 29 years old.

Affecting 1 in every 2,500 live-born White newborns, CF is the most common lethal genetic disease among White children; Blacks are affected less frequently, and the disease is rare among Asians. Recognized as a distinct disease only since 1938, CF is now being diagnosed with increasing frequency throughout the world. The diagnostic test for CF is the sweat test, which measures the amount of salt in the sweat. Although carriers can pass this trait on to their children, they themselves are symptom free. Treatment for CF is expensive and time consuming and depends on the stage of the disease. The regimen consists of a variety of antibiotics to combat lung infections, supplemented by physical therapy and inhalation therapy or postural drainage methods to help remove mucus from the lungs (Cystic Fibrosis Foundation, 1995).

THEORETICAL BACKGROUND

This section briefly reviews the literature on the effects on parents of having a child who is seriously ill, the impact of parental mourning on the surviving children, children’s reactions to loss of a parent, and children’s reactions to loss of a sibling.

The Parent-Child Relationship

The experience of having a fatally ill child represents perhaps the enactment of the worst fear of any parent. Even researchers, working with families with dying children, make their way through bouts of depression and visits to therapists (Binger, personal communication, February 20, 1981).

One of the earliest studies of leukemia, perhaps the most researched disease in psychosocial studies of this area, was undertaken by Bozeman, Orbach, and Sutherland (1955) to determine how mothers adapt to the threatened loss of their children from leukemia. Intensive focused interviews of 20 mothers of afflicted children showed maternal reactions to the threatened loss of their children to be severe, with much expressed guilt. Natterson and Knudson (1960) studied the mothers of 33 children diagnosed with cancer, leukemia, or blood disease. During the end phase of their children’s illnesses, almost half the mothers were tense or had a strong tendency to weep and cling to hope; when the children actually died, these mothers reacted hysterically. Binger et al. (1969) undertook a retrospective study of parents of 20 children who had died from leukemia between 1964 and 1966. In half the families, one or more members had emotional disturbances that were sufficiently severe to require psychiatric help, although none had required such help before; in other families, milder disturbances occurred. Fathers, a group neglected in most studies in this area, were coping by various ways of absenting themselves from involvement with their families, with profound ramifications for their wives and children. Futterman and Hoffman (1973) conducted extensive open-ended interviews with 23 sets of parents of children with leukemia during various points during the course of the illness and after the death. They described a number of dilemmas confronting parents in adapting to the fatal illness of their children. Parents must work out a balance between conflicting tasks such as attending to immediate needs of the child and planning for the future; cherishing the child and allowing him or her to separate; and caring for the child while preparing for his or her death through gradual detachment. If it seems extremely difficult to achieve these kinds of delicate balances for a relatively short interval of time, the difficulties arising when the length of time is far greater such as is the case with CF, can be imagined. A child with CF frequently lives until early adulthood.

Although far less investigated than leukemia, the literature on the impact of CF is much more pessimistic. Turk (1964), in a study of 28 parents from 25 families with a child afflicted with CF, described the difficulties for families as they struggle to care for their ill child. Lawler, Nakiekny, and Wright (1966), in an intensive psychiatric study of 11 families of patients with CF, found 8 of the 11 mothers showed symptoms in interviews of being clinically depressed, and the majority said they felt that they were “living in the shadow of death” (p. 1044). The fathers showed unusual incidence of psychopathology; many had ulcers. Tropauer, Franz, and Dilgard (1970) studied 20 children with CF and 23 mothers and confirmed the high degree of maladaptation in mothers. Leiken and Hassakis (1973), selecting 4 parents from a CF clinic for clinical discussion, pointed out how the adaptive balance is necessary once again. The “doing defense” (p. 55) can be helpful, but if overdone, the parents rarely see each other and are not available to give each other support. The commonly used defense of suppression also can be problematic. These parents must maintain an ability to suppress freely and frequently. Families must think of the death of their child very rarely. They must suppress or even deny, at times, that the future is filled with uncertainty. However, massive suppression or denial can be only ineffective in coping with anxiety and also can cause interference with medical care.

More recent studies of families coping with a child with CF have reported similar difficult stresses. Phillips, Bohannon, Gayton, and Friedman (1985) found 10% to 15% of the parents described major problems related to their marital relationship, feeling guilt about not doing more for their child with CF, and concerns for their other children. Quittner, Di Girolamo, Michel, and Eigen (1992) found that mothers reported greater strain than fathers in managing their caregiving role and reported higher levels of depression. Bluebond-Langner (1991a) identified the various strategies that families use in order to contain the intrusion that the disease makes into the life of the family. Patterson, Budd, Goetz, and Warwick (1993) stressed the importance of encouraging families to balance their resources between the child’s needs and the needs of the family.

Families adjust to the serious illness of a child in a variety of ways. Two main coping mechanisms would appear to be normalizing as much as possible and restricting perspective.

Normalize as Much as Possible. There is a social stigma inevitably associated with having hereditary disorders (Gordon & Kutner, 1965), and this must be managed as effectively as possible (Birenbaum, 1970). Most families attempt to achieve a balance between using other afflicted families as a reference group and maintaining themselves as part of normal society. Within the family, the sick child is treated as normally as possible within the confines of his or her illness, and with objective losses minimized. Necessary restrictions on activities are generally placed for all children alike, preparation of medication becomes a game, and so forth, in an attempt to make this routine.

The increased caretaking burden on the mother initially falls within the rubric of her natural role as mother. The family attempts to retain impressions of normality within the community as far as possible, and friends may be dropped if they do not demonstrate a careful “inattention” to certain facts about the family (Birenbaum, 1971). As the child ages, however, this becomes more problematic. The central goal of the conventional parent-child relationship is one of greater independence of the child. As the sick child grows older, however, the parent’s role becomes increasingly discrepant from parental roles in “normal” society. In conventional families, change in relationship is constant, as parents look forward to seeing their children establish their own households, and as they themselves look forward to becoming grandparents, perhaps anticipating some degree of dependence on their children when they reach old age. The continued use of the early parent-child relationship when the ill child is in adolescence or early adulthood conveys the impression noted by Birenbaum (1971) of “forever crystallized relationships” (p. 64).

Through the desire to spare the feelings of the sick child as well as to normalize the experience within the family, restrictions that are necessary for the survival of the sick child may be applied to all the children alike, so the healthy siblings may be treated as though they, too, were sick, and they may end up believing they are. Due to the confusion surrounding the illness, siblings grow up with distorted concepts of illness, death, and the relationship between the two. Siblings have learned firsthand that rare things are not so rare, that statistical odds are meaningless experientially, and that if something bad can happen, it will. Their own survival may be perceived as by capricious luck rather than by any mastery on their part, similar to the perception of survival by the concentration camp survivor (Benner, Roskies, & Lazarus, 1980).

Restrict Perspective. The capacity to change the environment is severely limited; thus individuals are forced to rely on intrapsychic modes of coping that are essentially palliative in function. Heavily used defenses such as suppression and denial wrap the entire family in the chronic “web of silence” described by Turk (1964). Unfortunately, what this can mean for the children is a learning experience of denial and suppression to problems rather than an experience in meeting difficulties head on and mastering them.

Suppression of the ultimate outcome is necessary on a continued daily basis. The goals become keeping death at bay a little longer, increasing the value in living for the moment (Futterman & Hoffman, 1973), and centering achievement on survival. Fathers who, prior to learning the prognosis, had been considering vocational changes postponed any decisions, mothers found it impossible to make decisions about future pregnancies, and so on (Bozeman et al., 1955). The contraction of the future corresponds to a gradual curtailment of hope. If in the beginning of the illness there is hope for a cure, toward the end, as Friedman, Chodoff, Mason, and Hamburg (1963) pointed out, there is only hope for one more remission or one more good day. Such essential coping strategies as contraction of the future and curtailment of hope rearrange priorities for the sick child, for whom achievement is defined as survival, and living for the moment becomes less a hedonistic creed than the most reasonable modus operandi available.

Because the reason underlying this massive restructuring of expectations is not explicit (through suppression, denial, desire to spare the feelings of the sick child, and attempts to appear as normal as possible) this orientation generally spills over onto the entire family, including healthy siblings, and especially younger ones, who have had no previous exposure to a healthy upbringing. If the healthy sibling understands that he or she is indeed healthy, he or she may wish to be sick in order to gain parental attention. Illness has come to be seen as the only route to the inaccessible mother (Tropauer et al., 1970). Because the future is rarely discussed in the family, growing up is inextricably associated with dying and parenting is seen as problematic at best, there is little socialization into future adult roles within the nuclear family. At the same time, there may be inadvertent socialization into a sick role.

We are reminded of Parsons and Fox’s (1952) conceptualization of illness as both a psychological disturbance and a deviant social role. The deviant unit, set in the middle of an isolated nuclear family, might be expected to have widespread ramifications. Deviance is usually controlled within the social structure by a complex system of mechanics, as Parsons (1951) elucidated:

Very broadly these may be divided into the three classes of a) those which tend to “nip in the bud” tendencies to development of compulsively deviant motivation before they reach the vicious circle stage, b) those which insulate the bearers of such motivation from influence on others, and c) the “secondary defenses” which are able, to varying degrees, to reverse the vicious circle processes. (p. 321)

In the situation of chronic illness, the sick child (a) is not responsible for his or her deviance; (b) is cared for primarily within the family unit itself, and is therefore not at all isolated from influencing others; and (c) sets a machinery of defenses in motion that serve psychological needs, not control of deviance. Because the child will never get well, he or she is under no role obligation to “recover,” allowing for the “contamination” elaborated by Parsons and Fox (1952). Here, deviance is allowed to set the norm, and change may follow. The situation tends to grow worse as the child becomes more ill. Parents feel increasingly excluded from the normal community (Gordon & Kutner, 1965); friends drop by less and less (Turk, 1964); fathers absent themselves from their families in order to hide their pain (Binger et al., 1969); communication between husband and wife flounders as blame is shifted back and forth (Gordon & Kutner, 1965); and family integration, seriously endangered, frequently breaks down (Crain, Sussman, & Weil, 1966).

Researchers have investigated the impact of different communication styles within families that have children suffering from various diseases, including cancer (Spinetta & Maloney, 1978), CF (Fanos, 1987), and HIV (Hardy, Armstrong, Routh, Albrecht, & Davis, 1994). An open communication style, which is characterized by parents being available and honest with children if they wish to talk about their illness, has been found to enhance the coping strategies of both children suffering from pediatric cancer and their parents (Koocher & O’Malley, 1981). In addition, better overall psychological adjustment in the family has been related both to an open communication style and to emotional expression (Koch, 1985; Spinetta & Maloney, 1978). Providing information about a child’s illness and treatment program to the healthy siblings of patients with cancer has also been related to better coping (Kramer, 1984). Unfortunately, in most families with chronically ill children, communication about the disease and its implications tends to be closed (Mellins & Ehrhardt, 1993; Turk, 1964). For example, researchers studying both CF (Fanos, 1987) and pediatric HIV (Mellins & Erhardt, 1993) found that most parents do not talk a...

Table of contents

• Cover
• Half Title
• Title Page
• Copyright Page
• Dedication
• Table of Contents
• Foreword
• Preface
• Chapter 1 The Problem
• Chapter 2 The Family Setting
• Chapter 3 The Sibling Relationship
• Chapter 4 The Sibling’s View of the Illness
• Chapter 5 The Ordeal
• Chapter 6 The Aftermath
• Chapter 7 The Next Year
• Chapter 8 Fear
• Chapter 9 Waiting
• Chapter 10 Guilt
• Chapter 11 Resolution
• Chapter 12 Recommendations
• Appendix: Methods
• References
• Author Index
• Subject Index