MODELOS HIDROLOGICOS

The family's emotional expressiveness (EE scales) is an important aspect o f family fianctioning. The examples given above not only show aspects o f the mother-child, father-child, and mother- father relationships but also describe other aspects o f family functioning such as communication, boundaries, marital conflicts, etc.. In this section, I will discuss other aspects associated with family adjustment, which have not been mentioned in the previous section.

Many families in this study showed marked difficulties in their relationship. This is not surprising given the extreme stress faced by these families. Most parents identified the time surrounding the diagnosis o f the child as a critical time. In fact, many parents believed that their family difficulties started during the period in which their child was diagnosed. Mr and Mrs Jordan are a typical example.

Mrs Jordan noticed that something was wrong with Paula. Initially, Mr Jordan didn't notice anything. On a few occasions, when his wife was willing to take Paula to the hospital, he insisted that she was too anxious about Paula's health, and reassured her about their daughter's well-being.

the hospital earlier. She was also very bitter with her husband for not having listened and trusted her judgement. On the other hand, Mr Jordan felt very guilty about both not recognising his daughter's symptoms and not having supported his wife. Believing that he failed as a father, and feeling rejected by Mrs Jordan, he put all his efforts into being the breadwinner; whilst his wife became Paula's only carer. Paula's dad was unhappy with his function in the family. However, due to his low self-esteem following his daughter's diagnosis, he didn't have the courage to discuss openly his role in the family. In this way, avoiding conflict and confrontation, the parents' roles were re-defined.

Although six years had passed since the diagnosis, 'that period' was still an unresolved issue for this couple. During all this time, Mr and Mrs Jordan had kept physically and emotionally distant from each other. When they were confronted with their daughter's need for transplantation, the feelings o f the past became very vivid in the present. Mr and Mrs Jordan were very resentful and critical o f each other. Subsequently, they were unable to discuss with each other the implications of their daughter having/not having a transplant. They were also unable to discuss the illness and prognosis with Paula, who wanted to discuss the likelihood of her own death.

Paula was this couple's first child. It is of interest that, in this study, a significant number of children with cystic fibrosis were living with single mothers. In 75% o f the cases, the contact between the ill child and the biological father was non-existent. Nearly all mothers said that the biological fathers left the family at the time o f diagnosis or soon afterwards. The most common reason given was that the father felt unable to bring up a child suffering from a life-threatening condition.

It should not be concluded that having a child with a chronic condition necessarily has a detrimental effect on the marital relationship. Only 30% o f the parents participating in this study suggested that the illness had a negative effect on the quality o f their marriage. Furthermore, some of these parents accepted they had some marital difficulties even before the child was conceived. An average o f 50% of the parents reported that either the child's illness did not have any effect on

The data collected during the interviews with the parents suggest that mothers have different ways of coping with the crises than fathers. Mothers seemed to relieve anxiety by talking and sharing their feelings with others, preferably their husbands. However, if their husband was absent or unavailable, the nurses or the mothers o f other children who were also admitted on the ward also had a buffering effect on mother's distress.

The fathers were more introverted, and found it more difficult to talk about their concerns and feelings. Few fathers found it easier to talk to someone else other than their spouse. These fathers perceived their partners as weak and in need of constant support; they were worried about jeopardising their partners' coping abilities if they were to admit to them their own distress.

Whatever differences the coping mechanisms were between the husband and wife, parents in well adjusted families accepted their partner's ways o f coping. Often these parents were able to create an environment in which their partner's needs were met. Some parents would have liked their partner to behave differently. Nevertheless, they did not feel resentful but sympathetic and understanding towards their partner.

On the contrary, parents in poorly adjusted families were more focused on their own feelings and needs, without being aware o f their partners' necessities. Often they were resentful and critical of their partner's behaviour.

Although in some families parents shared 'equally' the practical and emotional demands of treatment, overall, mothers were mainly responsible for the burden o f the child's treatment. However, clinical impressions seem to indicate that mother's subjective perception of father's emotional availability was more strongly associated with family adjustment than the father's lack of involvement with the child's care and treatment. Those families in which the parents had not organised their life and roles in a manner that was acceptable to both o f them were also more

satisfactory agreement about their roles and tasks. This suggests that it is not the behaviour in itself what it is important, but the context and the recognition o f what a specific behaviour means.

Changes in Family Adjustment

There were few changes in family adjustment following the improvement in the child's physical condition. The parents o f those children, whose family adjustment improved, attributed positive characteristics to the experience of surgery (such as personal growth or the discovery of new qualities in their partner).

On the contrary, parents whose family adjustment deteriorated were still resentful and angry about what their partner did or did not do at the time o f surgery. All o f them described their partner as unsupportive and suggested that the surgery had accentuated the negative aspects of family relationships. In summary, most families who were poorly adjusted prior to the child's admission for surgery remained poorly adjusted following successful treatment.

DISCUSSION OF THE RESULTS. IMPLICATIONS OF THE STUDY