siblings of paediatric cancer patients: a population at risk

Medical and Pediatric Oncology 15:6268 (1987)

Siblings of Paediatric Cancer Patients: A Population at Risk

Michael Carr-Gregg, MA, and Les White, MB, FRACP

The psychosocial care of children with cancer has received increasing and welcome emphasis in the medical literature. However, the current and future status of siblings of such patients has been an underestimated area of concern. We examine the general importance of sibling relationships and present the literature regarding siblings of paediatric oncology patients. Donors and recipients of bone mar-

row transplants are considered specifically. Preliminary results of original research, sup ported by available published studies, suggest important disturbances in the mental health of siblings. Implications for paediatri- cians and other health professionals as well as prevention and intervention strategies are indicated.

Key words: neoplasm, child, psychology, prevention, therapy I

INTRODUCTION

Developments in the management of many childhood cancers have significantly altered their prognosis, so that survival is now possible in a majority of children with malignant neoplasia [ 11. Consequently, the clinical course may now extend over many years, punctuated by both disease- and treatment-related complications, and places a heavy, sustained physical and psychological burden on the patient, parents, and caregivers [2]. The remarkable improvement in the prognosis of childhood neoplasia has also created problems relating to the stress inherent in the child’s ongoing treatment and eventual return to school [3,4].

At the very least, children with cancer face the same types of adjustment difficulties experienced by those with other chronic illnesses. The diagnosis represents a situa- tional crisis suddenly imposed upon the family, causing an often persistent disequilibrium as the recreational, educational, and social activities of the family are se- verely curtailed and adjustments revolve around the ill child. The disease impinges on the parents through financial strain [5], marital disharmony 161, and enforced separation, which may be frequent and/or prolonged [7]. The patients and their families live under the covert threat of death for considerable periods of time, with resultant incapacitating emotional stresses 131.

The recognition of this wide range of negative psychosocial sequelae has led to the increasing emphasis on the family as the unit of treatment, and also to the advent of a multidisciplinary team approach to the psychosocial

care of such families [2,8]. These new problems have attracted considerable research attention, and led to some innovative and effective intervention programs [9,10] directed primarily at parents [ I l l and the sick children [ 121. Despite frequent anecdotal references to siblings in the early psychosocial literature [ 13-15], comparatively little work has been directed towards the brothers and sisters of the child with cancer. Consequently, some of these siblings experience considerable and relatively underestimated psychological distress, with potential long- term sequelae. As one clinician observed, “. . . there has not been a strong commitment to the sibling subsystem” [ 161.

This article proposes to examine the general importance of sibling relationships, review the literature regarding siblings of paediatric cancer patients, present preliminary results of current research, and discuss the implications of these findings for medical and other health professionals. Finally, some intervention and prevention strategies that have proved useful overseas in dealing with these problems are suggested.

From the Department of Health Administration, The University of New South Wales, Kensington (M.C.G.), and Prince of Wales Chil- dren’s Hospital, Randwick (L.W.) New South Wales, Australia.

Address reprint requests to Dr. Les White, Paediatric Oncologist, Prince of Wales Children’s Hospital, High St., Randwick NSW, Australia 203 1.

0 1987 Alan R. Liss, Inc.

Siblings of Cancer Patients 63

As more children enter treatment programmes, the impact of their illnesses on parents and siblings becomes a factor not only in the subsequent health of these siblings, but also in the success of the treatment programme itself.

SIBLING RELATIONSHIPS

Although the primary emphasis in health care has traditionally been placed on the parent-parent or parent- child dyad, there is a growing recognition of the strong influence siblings have on one another. Sibling relationships are ones of poignancy and power [17], character- ized by intensity, complexity, and ambiguity. One important aspect of these relationships is the time span they encompass. In our increasingly mobile society, where interactions outside the family are often short- lived, a sibling relationship may span six or more de- cades. In addition, sibling relationships are also intense, especially in childhood. They are obligatory relationships where, for better or worse, the children spend more time together than any other family subsystem [ 18-20].

Through the enforced interaction over the long years of childhood, siblings can exert a powerful influence on shaping each other’s identity. They may assume a variety of roles with each other: mentor, supporter, comforter, protector, and socializer. Roles may change rapidly, or a number may be played out simultaneously.

In the microcosm of the sibling world, children first encounter the significant social experiences and problems which they will face in other relationships [21]. The sibling world has been described as the testing ground “. . . where naked emotions, betrayal, deceit, hate, jealousy and cruelty abound” [16]. More important are the positive, sustaining aspects of respect, love, and loyalty and a deep bond of both verbal and visceral com- munication.

The common thread through it all is the ambivalence generated by sharing a common environment as well as parental time and affection. The vacillations between solidarity and rivalry, competition and coalition which are evoked exert a powerful influence on personality and other relationships. The essence and interplay of the ambivalence provides the framework with which the health professional can understand, enhance, and support sibling relationships.

Some workers have identified as a focus of concern the siblings of children with special health problems [ 16,221. Considering that there may be one or more well children in families with an ill or handicapped child, sheer numbers alone make them a significant population. Secondly, because advances in treatment enable children who might have died, or been chronically hospitalized, to now be treated for long periods at home, their siblings are more exposed than ever before to the ill child.

There is a growing awareness that the success with which many chronic paediatric conditions are managed is often related to the family’s social and psychological adjustment [23]. Therefore, how siblings fare is clearly relevant. Because families are a system, distress in one member affects both the system and each member in it.

EFFECT OF THE DEATH OF A SIBLING

There are numerous reports documenting the reactions of children who have lost a sibling [24-341. While severe psychopathology was reported [24], it is by no means an inevitable outcome of sibling loss. Among the disturbed reactions observed was guilt; anxiety; death phobias; disturbances in cognitive functioning; loss of appetite; psychosomatic disorders; separation anxiety; and dis- torted concepts of illness, death, doctors, hospitals, and religion. Although most concluded that the response of a child to the death of a sibling was determined by a variety of factors-such as age and characteristics of the dead sibling, the parents’ handling of the initial reaction of the surviving child, and the developmental level of the surviving child-some remained optimistic that professionals could intervene to prevent persistent problems [26].

A recent study has shown that siblings of children who died at home described a significantly more positive experience than siblings of children who died in hospital [33]. The majority of siblings of patients receiving their terminal care at home reported that they were prepared for the impending death, received consistent information and support from their parents, and were involved in most activities concerning the dying child. On the other hand, siblings of patients who died in hospital described themselves as having been inadequately prepared for death, felt isolated from the dying child and parents, were unable to use their parents for support or information, were unclear as to the circumstances of the death and felt useless in terms of their own involvement.

THE SIBLING OF THE CHILD WITH CANCER

The demands of a child’s chronic illness clearly influ- ences the status and emotional well-being of siblings. It is thus perhaps not surprising that similar responses have been recorded amongst the siblings of children with cancer. Most of the early studies relied on anecdotal reports from parents and/or medical staff. These descriptive studies reported various behavioural problems such as jealousy, enuresis, soiling, school refusal, fire-setting [35], as well as a variety of somatic complaints, including headaches, abdominal pain, and symptoms similar to those of their sick sibling [36]. More recent studies em- phasized reactions such as guilt [37,38], anxiety [39,401, various school problems [7,41,42], feelings of rejection [43,44], and poor relationships with parents [45]. Esti- mates of the prevalence of such problems vary, but in

64 Carr-GreggandWhite

one 1980 study, researchers found academic, psychological, and social problems in 36% of siblings in 25 families which were interviewed at 6 months after the death of their child [46].

Clinical observation suggested that the siblings were experiencing stress similar to that of the patient and these included feelings of isolation, anxiety, and depression [47,48]. These problems seemed to stem from the many adjustments within the family system following the diagnosis of cancer and entry into a vigorous treatment programme.

The first of these adjustments is the temporary separation of the family, characteristically with the mother and ill child isolated in the hospital and the father left at home to care for the other family members. In this situation the sibling’s needs for daily attention and nur- turing typically receives low priority. Their long-term needs, such as educational planning and goal setting, may be seriously compromised. When parents are confronted with this alteration in their routine, they usually assume that they will have more time to attend to the other children’s needs “later,” meaning when either the sick child has died or is cured.

As these well children become more marginalised, in the absence of any direct information, they become increasingly confused and anxious about the cause of their sibling’s illness and may even fear responsibility for the events. Some indulge in magical thinking, “. . . invent- ing private versions laced with misconceptions. . . fears abound about their own illness vulnerability, wondering, for example, if cancer is contagious” [49]. In addition to their personal distress, the siblings also are affected by other events occurring within the family, including any marital distress or the financial burden the illness im- poses on the household. In certain instances siblings may choose to deny the crisis they are part of and may con- tinue to suppress the memory of the painful events as they grow older.

Attempts to explore the plight of these children systematically have been undermined by numerous method- ological problems such as small sample size, inadequate controls, and the use of psychological tests designed primarily for populations of mentally ill patients [40]. It is often difficult to differentiate the effects of illness or handicaps on a sibling relationship from the intensity and ambivalence which is normally present [16]. It is likely that some of the reactions which have been reported are not unique to the brothers and sisters of cancer patients, but are, indeed, aspects of all sibling relationships exag- gerated by extraordinary circumstances. Not surpris- ingly, the present research has been plagued with conflicting conclusions. Perhaps the most significant shortcoming has been that, with few exceptions, siblings

The four studies that sought data directly from the siblings concluded that these children were a population at great risk of negative psychosocial sequelae [49,52- 541. It appears that “healthy siblings experience stress similar to that of the ill child, which is of equal or greater intensity.” [50]. Indeed, the brothers and sisters may be less well adjusted than any other family member [49]. A significant proportion of these siblings were inadver- tently excluded from the child’s treatment. One study described “negative feelings” in both patients and siblings, but older siblings were found to be significantly more concerned with failure [49].

A recent Hungarian study, in which relationships within 75 families of children with cancer were analyzed, reported that of all family members, siblings were in the most unfavourable situation [54]. A notable factor was the dramatic reduction in contact between the parents and healthy siblings. Utilizing a variety of approaches, including a game designed to construct the child’s world, these workers were able to evaluate family interactions. Most importantly, they sought and documented data re- peatedly, at various stages of the cancer and its treatment. The siblings were clearly the most affected in their relationships, both with the ill child and their parents. Fur- thermore, the type of problems varied according to the chronicity and stage of the illness [54].

The preliminary results of a long-term study under- taken by our group have recently become available [%]. The study compared the self-concept of three groups of paediatric cancer patients (acute lymphocytic leukaemia, bone tumours, and other solid tumours), a group of their siblings, and a control group of disease-free children. Using the Piers-Harris Self-concept Scale for children [56], it was found that the siblings had a significantly lower overall self-concept score than not only the control group but also than all three groups of paediatric oncology patients.

THE DONOR SIBLINGS OF BONE MARROW TRANSPLANT PATIENTS

With the recent marked increased use of bone marrow transplantation in paediatric haematology and oncology, investigators have begun to analyse the psychological sequelae of the procedure [57-611. Furthermore, as the donors are most commonly siblings, recognition of the importance of the very special impact of the transplants on the donor, recipient, other siblings, and the relationship between them has become the subject of recent studies [62-641. Psychological evaluations of sibling donors found degrees of psychopathology ranging from very mild to severe [65]. Many donors felt responsible for the outcome of the transplant, often experiencing inamromiate milt when comdications arose 1651. Psv- have not been asked to speak for themselves [49-511. .. , ” L a .,


chological problems were said to be exacerbated when social management. We would regard the referring pae- transplants involve twins or opposite-sex siblings and diatrician or practitioner who continues to participate in particular concern has been expressed for the donor when the treatment and monitoring of the cancer as an essential the patient dies, or suffers serious complications [62]. member of that team. We all, however, need to increase

It has been suggested that the selection of a donor our awareness and our efforts with regard to the needs of creates a new relationship between siblings in a family. the siblings of our cancer patients. While the “saviour” role does not seem to be as evident Siblings are rarely present, let alone included, in the in bone marrow transplants as in kidney transplantation initial and subsequent interviews with the parents. We [66,67], ambivalence is still common among both donor should ensure that opportunities are provided for the and non-donor siblings. In some instances the donors sibling to ask questions about the disease and its treat- wish they had not been chosen one, but sometimes seem ment. Furthermore, creative ways in which to elicit the to enjoy the role as the “hero.” Non-donor siblings have affect-laden material from siblings and counter their nat- expressed anger at being left out, while at the same time ural reluctance need to be considered. Methodology and experiencing a sense of relief at not having to undergo personnel will vary according to prior associations, levels any procedures. Research into the psychological prob- of personal involvement and interest, family dynamics, lems of donor and non-donor siblings are still in their and the age of the siblings. However, it seems appropri- infancy, although some suggestions as to optimal psycho- ate that the paediatric oncologist and the family paedia- social support are beginning to emerge [68]. In families trician or practitioner jointly take responsibility for the where no compatible sibling donor is found, guilt may task. Support may then be sought from other members of be experienced. Guilt, anger, and depression may result the team as required. when the graft fails. The nature and extent of the impli- While groups for siblings of cancer patients have been cations for the donor in these cases is as yet unknown, as widely advocated, only a few studies have attempted no systematic investigation has been reported. It seems systematically to evaluate the efficacy of such groups clear, however, that siblings in this situation should be [72]. The sibling group was successful in helping the closely monitored to ensure that any manifestations of members define and discuss common problems in an negative psychosocial sequelae can be recognized early environment that was conducive to the exploration of and appropriate interventions organized. their educational and psychological needs. Positive

An additional problem relates to the medical ethics changes in individual effect were reflected in the progres- involved in dealing with sibling donors. Although the sive development of ease in discussing illness-related ethical issues involved in paediatric oncology, particu- topics. larly those of informed consent, are coming under in- Critics of modern medicine stress the excessive reli- creasing scrutiny in the literature [69-711, no published ance on the increasingly sophisticated diagnostic and study has addressed the issue of the specific problems therapeutic technology [73] and maintain that “doctors” inherent in obtaining informed consent from sibling do- are more comfortable with clinical decisions than with nors, especially in those cases where the potential donor the emotional ramifications of the disease in the context is a minor. of the child’s life and family. In such a setting, where

life and death may depend on medical-scientific compe- tence, psychosocial issues remain subservient to the application of the latest technical advances [74]. It is our lMPLKAT’oNS THE HEALTH PRoFESSloNS

Although it is becoming evident that the needs of siblings should be further studied and addressed, the choice of methodology and personnel is less clear. Pae- diatricians have the opportunity to ensure that the siblings of paediatric cancer patients are not bereft of realistic, age-appropriate information. As research indicates that these children rarely ask overt or spontaneous questions [7], it is important to interpret their silence for the parents along with suggestions as to how to deal with them most effectively.

In most paediatric haematology/oncology units, con-

contention that these various aspects of management do not conflict, but rather complement each other if all issues are suitably evaluated, treated, and monitored. With the advent of the multidisciplinary approach to paediatric oncology, the physician is now able to coordi- nate the total care of the child and family with the aid of the various team members. In our institution the team includes hospital nursing staff, social worker, psycholo- gist, consultant psychiatrist, play activity therapist, home care nurse, and hospital school teacher [2].

SUGGESTIONS FOR PREVENTlONll NTERVENTION siderable emphasis is on the psychosocial care of the Datients and their families r21. Total care is provided by

multidisciplinary team led- by a paediatric oncologist The foregoing suggest an opportunity for the routine and supported by professionals with expertise in psycho- and systematic application of a variety of prevention/

66 Carr-Greg and White

intervention strategies. All measures below depend on parental education and consent. The paediatric oncologist is in a position to co-ordinate these efforts, which have a number of aims:

Monitor Siblings Throughout the Illness

All team members in contact with such families should accept responsibdity for seeking specific information about the physiological, psychological, and social status of siblings, with special references to disturbances in appetite, sleep, mood, and behaviour. It is useful to engage the siblings in informative conversation, allow them to feel less peripheral, and encourage parents to include them in the care of the patient.

The assessment should be on-going , involving regular evaluations to determine current levels of coping and adjustment status along with emergent psychosocial needs. This involves the recognition of the individual differences among siblings, and allows siblings to set their own pace for learning and involvement. The team must evaluate the informational needs of the siblings as they mature, so that the level of knowledge received is congruent with their cognitive abilities and conceptual skills.

Enlist the Support of the Parents

The team should endeavour to encourage the parents to take an active part in these preventionhtervention strategies, by facilitating information sharing. Since some parents tend to be insecure about responding to questions and concerns, team members can offer advice and support in order to ensure that the siblings receive age- appropriate information. This may involve teaching the parents to interpret sibling coping strategies, to initiate discussions, and to legitimise and acknowledge reasona- ble negative effects. Parents need to know that lengthy explanations designed to anticipate every question may not be appropriate and that it may be preferable to tackle problems not as a whole but as manageable components.

Preventative Strategies

In recognition of the importance of the relationship that exists between siblings, parents and team members should encourage brothers and sisters to have as much direct contact with the ill child as is desired and practical, complemented by phone calls, cards, and letters. Allow- ing the sibling to be present during therapy, to handle any special equipment to be used at home, while also respecting their reluctance to be with the sick child, all need to be considered.

The team might suggest that the family hold con- ferences, designed to relay information to the siblings as well as to provide them with the opportunity to ask questions, acknowledge feelings, enlist personal

strengths, and learn to cope with stress. This can often combat the tendency of some parents to overprotect the well siblings by denying the severity of the patient’s illness or impending death. These meetings can also serve to “dethrone” the sick child, restoring the perspective in the family. It may be opportune to involve the extended family, who can be useful parental substitutes for siblings during parental absences.

It is important to recognize special “at risk” categories of siblings. Below the age of 5, children tend to be more vulnerable to disruption; lacking the cognitive capacity to understand the situation, they may interpret their parents’ absence as punishment, resulting in guilt and anxiety [75]. In other cases, such children may lack strong reality concepts, resulting in grotesque fantasies [76]. Bringing siblings, including young ones, to the hospital is feasible and therapeutic. Provisions to meet the needs of siblings should be provided at least for outpatient visits and ideally also during hospitalization.

Recent studies have also questioned the importance of ethnicity as a risk factor in the psychological distress of such families [77]. The siblings of different cultures, who may be further isolated from their ill brother or sister’s treatment owing to cultural barriers [78], should be considered more susceptible in these situations and warrant- ing specialized preventative care.

The aim is to minimize disruptions, maintain a relatively consistent routine at home, and work to balance the social, recreational facets of family life so that tasks of care do not entirely dominate. Having a consistent caretaker in the absence of parents and preparing siblings for major changes in home life before they actually occur are important. Extended families are a valuable asset.

Problem Siblings

In instances where siblings are identified as being in distress, the team should discuss the options. For prolonged episodes of maladaptive behaviour, expert psychological or psychiatric consultation should be sought, and conjoint family therapy may be particularly useful in such situations [79]. However, if one of the team members has established a special relationship with the sibling, the physician may encourage participation by this member in subsequent therapy. Depending on the nature and extent of the child’s problems, remedying the situation can often be a difficult task, and may require a variety of creative investigative techniques to elicit affect-laden material. In some cases behavioural interventions geared towards specific problems may be required. Since the first manifestation of distress often occurs at school, it is important for a team member to enlist the child’s school teacher as an additional source of information, and to maintain that liaison.


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CONCLUSIONS

Brothers and sisters of children with cancer evidently suffer psychosocial sequelae, which have hitherto tended to be underestimated. It is hoped that the observed defi- ciencies in the care afforded to siblings of children with cancer will be further documented, studied, and eventu- ally overcome. The suggestions offered herein may serve to open the discussion and heighten interest in the care of these siblings while the prognosis of the paediatric oncology patient continues to improve.

ACKNOWLEDGMENTS

We wish to acknowledge the assistance of Professor D.W. O’Gorman-Hughes, Professor B. Waters, Dr. M.R. Vowels, and Dr. R. White in the preparation of this mauscript .

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