PHASES AS TYPES OF FAMILY ADAPTATION TO PROLONGED PHYSICAL ILLNESS IN CHILDREN

Abstract

A study of thirty families with a child suffering from a chronic physical illness has revealed a seven-phase sequence in the adaptation to the stress. 1st phase—Early recognition of possibility of illness (up to the first symptoms) may help prepare the family for post-impact behaviour. This early recognition may help forestall the beginning of illness and so prevent its severity. The non-recognition of possibility of illness may magnify the intensity of the family post-impact reaction and this early but over-anxious recognition may help the children to become hypochondriac and disturb their attitude towards illness. 2nd phase—Warning (from first vague symptoms to discovery of illness). In the presence of physical symptoms in children, usually one of the parents is anxious whereas the other is reassuring, so that this interaction leads to a ‘perceptive equilibrium’ equivalent to a rational reality-testing. The parental ‘perceptive equilibrium’ may be disrupted by the sudden absence of one of the parents and also by a too wide divergence of perceptions between the two; a situation which often occurs during an interparental conflicting crisis. The family behaviour during the warning period gives a good indication of its post-impact behaviour. 3rd phase—Impact (discovery of illness). Under the impact of discovery of illness family behaviour usually is rational and calm and panic exceptionally appears under conditions of complete helplessness. Having responsibility for someone else is an almost sure preventative of panic flight; a family who reacts with denial at the warning period will experience a shock at the discovery of illness, whereas a family who was over-anxious at the warning period will experience a sense of relief at the diagnostical statement. 4th phase—Fragmentation of family organization (first part of hospitalization). During the acute phase of a child's illness, there is a predominance of the ‘expressive’ grandmother-mother axis over the ‘instrumental’ grandfather-father axis. Stress being more tolerable when its duration is known, an acute illness is always stressful because medical prognosis can never be certain; because during a child's acute illness the physician's role and the parent's role to some extent overlap, the situation is all the more conflictual because the parents, and especially the father, not infrequently respond to the intrusion of the physician as if it were an infringement on their authority. To avoid contradictory information about the illness, communication should be centralized to one responsible person, the physician or one representative introduced by him. A variety of means for meeting the psychological threat of illness are more effective in reducing anxiety in the family than one kind of therapy which is supposed to be highly successful. Stress, over which the parents may have some influence through help to the child, can be borne with less evidence of anxious reaction and with a larger measure of co-operation. 5th phase—Recovery of the family interaction (last part of hospitalization). The parents' first attempts at adaptation to the chronic illness consist in the understanding of its pathogenesis and therapy. The second step in the adaptation lies in the child's and parents' learning of the new social roles implied by the permanent existence of the illness. 6th phase—Short-term adjustment (first six months after hospitalization) are usually characterized by a ‘Utopian’ atmosphere of warmth and sympathy in the family. Since most often the blame for the illness is put outside of the family, the stress has the effect of solidifying the family and increasing the role complement of its members. Discussion groups for parents of handicapped children give them some relief, complete their information and make them lose their feelings of uniqueness in acting as a ‘community of sufferers’. The chronic illness of a child being a primary loss for the family, grieving must be suffered by each member of the family, usually one at a time. 7th phase—Long-term adjustment (four following years). The passage from the ‘Utopian’ phase to the permanent adjustment period is usually gradual and more rapid in well-adapted families. The permanent readjustment means a ‘role modification’, i.e. an over-all change of roles on a mutually accepted new basis. Three types of family attitude towards a sick child are possible; the family can focus its attention on the sick child, or it can seem unaware of him, or it can regard him as a contributing but a special member of the unit. A family can learn from the illness experience if this experience has been successful and if its threshold of tolerance to anxiety has been raised. The impact of a chronic illness on the parents' expectation of other children depends on the deep meaning given to the illness and to the births considered.