When an individual in a family becomes ill, another family member typically becomes the primary caregiver. If the disease is short-lived, the costs of care giving are typically limited. However, prolonged illness in a family member can lead to profound changes in relations patterns, roles, and responsibilities within a family. Moreover, there is evidence suggesting that prolonged care giving can have adverse physiological and psychological effects. Different facets of the care giving literature are reviewed, with an emphasis on the association between familial stress and physical and emotional illness.
There are approximately 10 million chronically ill children in the United States. While there are broad differences in parental care giving related to differences in illness, there are a number of common issues and fears, and the majority studies describe parental distress related to the illness and/or their care giving responsibilities. Care giving within a family presents the predicament of focusing inconsistent amounts of family resources on a single member while concurrently maintaining some sense of equilibrium within the family.
There are no doubts that the experience of having a fatally ill child represents maybe the enactment of the worst fear of any parent. Yet researchers, working with families with dying children, make their way through attacks of depression and visits to therapists.
The experience of having a fatally ill child represents perhaps the performing of the worst fear of any parent. Even researchers, working with families with dying children, make their way throughout bouts of depression and visits to therapists.
One of the earliest studies of leukemia, conceivably the most researched disease in psychosocial studies of this area, was undertaken by Bozeman, Orbach, and Sutherland (1955) to find out how mothers adapt to the threatened loss of their children from leukemia. Intensive focused interviews of 20 mothers of distressed children showed maternal reactions to the threatened loss of their children to be severe, with much expressed guiltiness. Natterson and Knudson (1960) studied the mothers of 33 children diagnosed with cancer, leukemia, or blood disease. Throughout the end phase of their children’s illnesses, approximately half the mothers were tense or had a strong tendency to weep and cling to hope; when the children in fact died, these mothers reacted hysterically.
Binger et al. (1969) undertook a retrospective study of parents of twenty children who had died from leukemia between 1964 and 1966. In half the families, one or more members had emotional disturbances that were amply severe to require psychiatric help, although none had required such help before; in other families, milder disturbances occurred. Fathers, a group neglected in the majority studies in this area, were coping by diverse 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 throughout various points during the course of the illness and after the death. They described a number of problems confronting parents in adapting to the fatal illness of their children. Parents should 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 permitting him or her to separate; and caring for the child while preparing for his or her death through ongoing detachment. If it seems extremely difficult to attain these kinds of delicate balances for a relatively short interval of time, the difficulties arising while 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 collision of CF is much more pessimistic. Turk (1964), in a study of 28 parents from 25 families with a child afflicted with CF, depicted 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 atypical incidence of psychopathology; many had ulcers. Tropauer, Franz, and Dilgard (1970) studied 20 children with CF and 23 mothers and confirmed the high amount 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 essential once again. The “doing defense” (p. 55) can be helpful, but if overdone, the parents hardly ever see each other and are not offered to give each other support. The usually used defense of suppression also can be problematic. These parents should maintain an ability to suppress generously and frequently. Families should think of the death of their child very rarely. They must suppress or even deny, at times, that the future is filled with ambiguity. However, massive suppression or denial can be simply ineffective in coping with anxiety and also can cause intrusion with medical care.
More 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 linked 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 care giving role and reported higher levels of depression. Bluebond-Langner (1991a) identified the diverse strategies that families use in order to contain the interruption 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 change to the serious illness of a child in a variety of ways. Two main coping mechanisms would appear to be regularizing as much as possible and restricting perspective.
Factors contributing to family stress replicate the fear and threat posed by childhood illness:
fear of the future;
the weight of accountability for the child’s life and health;
the demanding custom of physical tasks of care;
difficulty in meeting desires of well siblings;
the threat to confidence in their own ability as parents;
‘blocks’ in communication between partners;
lack of family/friends able to share the care;
Lack of professional support.
It was clear that parents appraised and re-appraised their capability to cope with the demands of the situation and to some degree the resources available to them. Understanding of the condition and its management was of vital importance for confident parenting.
It would need a large-scale quantitative study to draw valid conclusions concerning differences and commonalities in the family experience across the different medical conditions, but it is worth taking out the insights offered by this study.
The experience of having a child with a heart defect proved a difference in that there was a concentration of stress around the experience of surgery. As identified by Alderson (1992) in her research into the issues around approval for surgery in childhood, consent by proxy is an awesome experience.
While there can be some difference in degree between the stress experienced by parents of children with diabetes as opposed to those with asthma and heart defect, family disequilibrium in reaction to the threat of the child’s illness was certainly seen in all four groups. The inexorable nature of the daily demand of treatment tends to be heavier for these two groups, and it is significant to consider how this impacts on professional support. None of the families was being visited by home care pediatric nurses at the time of the interviews, though the diabetic liaison nurse had previously visited or provided an educational input to the child’s nursery. Despite the families of children with asthma, the hospital was seen as the primary source of professional support. This implies the significance of expert knowledge of the child’s illness, but acceptance of the knowledge and skills which parents quickly develop in caring for their child is also important.
Parents seemed to recognize limitations on the knowledge of health professionals who were not part of the specialist team, given they were listened to, and sources of information were identified. The argument of the non-categorical approach to chronic childhood illness is that, in addition to the biomedical realities, there should be a concern with the total life experience of children and their families (Stein and Jessop 1991).
There were differences too within groups, which are tough to explain in terms of the child’s illness. Why did the family coping with three diabetics cope to keep so close to normality, while two families struggled to cope with one diabetic child? In the first case there seemed to be a real ‘normalization’ of diabetes; for the others, intelligence and motivation can have increased a sense of crisis as parents battled to control an illness which was perceived as threatening their child’s health and future on a daily basis. This suggestion is congruent with Moyer’s (1989) study of the result of a specialist nurse on parents’ needs and concerns. In this study parents with access to a diabetes specialist nurse were found to have higher levels of concern than those who did not, perhaps ‘the price parents pay for greater wakefulness and increased vigilance’.
Factors unrelated to illness certainly had a part to play. Each family is unique in its history and in the detail of its present experience. For one of the mothers of an asthmatic child, the truth that he was adopted meant that he was ‘extremely precious’ but also that the mother missed out on contact with the health visitor and that she carried a sense of responsibility to the child’s biological mother—‘Imagine how she would have felt if something happened to him.’ For the Asian family there were numerous complicating issues, not least the expectations of the father’s family that Mother should turn out a healthy child. This mother had a very good experience of professional support in the person of an experienced health visitor. Emerging openly and by inference from this study, elements of professional support can be identified:
affirming parents in their parenting ability;
alerting parents to the needs of well siblings;
‘Being there’ for the family.
As reported (Whyte 1994) the requirement for a professionally qualified person to help with child care was raised. responsiveness of the stress which fathers as well as mothers experience, and of the incremental effect of the parents’ stress on all the children, can lead nurses to engage in careful assessment while first coming into contact with families. There was proof of health professionals forming a superficial impression that families were ‘coping’ since there was no apparent sign of dysfunction. In this study the second interview usually revealed lots of problems than were apparent on first acquaintance. There is a strong case for arranging to meet fathers. The prospect to talk the situation through with an informed and sensitive but moderately detached third party can be profoundly helpful in itself. It can lead to the clarification and identification of problems which the family can then address.
Canam’s (1993) work on common adaptive tasks which parents face while caring for a child with a chronic condition has resonance here. She too emphasized the need for parents to understand the condition and its management, to be helped to deal with ongoing stress and recurring crises, to convene the developmental needs of their ill child and of other family members and to establish a support system. These were seen to be pertinent issues across the four diagnostic categories, suggesting that the argument for a non-categorical approach to professional support is well founded. The utilization of Canam’s framework of adaptive tasks as the base for development of a programme for parents of children with chronic illness could be a functional adjunct to family nursing in this context.
The values of a family systems approach are enacted in the efforts of families to cope with chronic illness in their child. Nurses are in contact with these families and their professional support is enthusiastically accepted. Patterson et al. (1994) make the important point however that, because families caring for a chronically ill child rely on so many service providers to meet their needs, it can be hard for them to maintain their own family boundaries. The identity and integrity of the family unit is thereby threatened. It is crucial to family nursing practice to recognize and seek to retain the identity and integrity of the family unit in a way that is receptive to the vulnerability of families as they undertake a long-term care giving commitment.
In modern pediatric nursing practice, where care is increasingly taking place in the community and nursing is taking a holistic stance with regard to patient care, a move to see the family as the unit of care is timely. As affirming the importance of expert clinical knowledge, we would argue that the multifarious connections between family interactions and the health of family members require nurses to look beyond the immediate problem of a child’s illness. In health care delivery there is increasing pressure to define and expand health strategies irrespective of specific disease entities. Utilization of a family systems approach to care has been demonstrated in Canada to be effective. The development of this approach to professional practice, convoyed by evaluative research, would provide evidence of its efficacy. Family nursing provides the understanding, the support and the tools for such practice.
In the situation of chronic illness, the sick child (a) is not accountable for his or her deviance; (b) is cared for primarily within the family unit itself, and is as a result not at all isolated from influencing others; and (c) sets a machinery of defenses in motion that serve psychological needs, not control of deviance. As the child will never get well, he or she is under no role compulsion to “recover,” allowing for the “contamination” elaborated by Parsons and Fox (1952). Here, deviance is allowed to set the norm, and change can follow. The situation tends to grow worse as the child becomes more ill. Parents feel more and more 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, critically endangered, frequently breaks down (Crain, Sussman, & Weil, 1966).
Researchers have investigated the impact of different communication styles within families that have children suffering from diverse diseases, including cancer, 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 improve the coping strategies of both children suffering from pediatric cancer and their parents. In addition, better overall psychological adjustment in the family has been correlated both to an open communication style and to emotional expression. Providing information concerning a child’s illness and treatment program to the healthy siblings of patients with cancer has also been linked to better coping. Unfortunately, in most families with chronically ill children, communication concerning the disease and its implications tends to be closed (Mellins ; Ehrhardt, 1993; Turk, 1964). For instance, researchers studying both CF (Fanos, 1987) and pediatric HIV (Mellins ; Erhardt, 1993) found that most parents do not talk about the child’s illness with the affected child. Hardy et al. (1994) found that only 20% of their sample of HIV-infected children had been informed of their diagnosis. This lack of communication impacts not simply the adaptation of individual family members but also affects the relationships between members. Tasker (1992) explored the complexities of disclosure in pediatric HIV. Fanos and Wiener (1994) discussed how this enforced silence pessimistically impacts both the parent-child and sibling relationships, and may even intimidate healthy development for healthy siblings.
The central goal of the conformist parent-child relationship is one of greater independence of the child. As the sick child grows older, however, the parent’s role becomes more and more 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 extent 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 essential for the survival of the sick child may be applied to all the children alike, so the healthy siblings can 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 indistinct 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 insignificant experientially, and that if something bad can happen, it will. Their own survival can 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.
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