Cancer in Young Adults: Through Parents’ Eyes

1. The loss of independence: The impact on family dynamics

The research indicates that independence was a key issue in the management of the illness. The young adults’ attempts to control their lives and maintain their independence caused problems in a variety of ways for their families. If parents allowed their sons and daughters to do as they pleased, they were consumed with anxiety for their well being. Yet if they tried to prevent them from undertaking activities that caused concern, they faced conflict. Thus it seems that parents felt constrained to accept the actions of their son or daughter, even those which might have made their recovery less likely or their physical suffering greater. Of course, such acceptance runs counter to parents’ concerns to protect their child – paradoxically a tendency that is heightened by the illness.

In addition, it is clear that the loss of independence resulting in intimate care reminiscent of that given in infancy can throw family relationships into crisis. Perhaps there is little that can be done to alleviate the emotional complexity and confusions that arise from such circumstances, but parents may well be reassured to know that it is common place.

It is not possible to make any recommendations as to the ‘right’ way to manage such tensions, but the indication seems to be that however hard it was at the time to ‘let go’, in the aftermath of the illness parents were able to reflect on the fact that at least their son or daughter lived life to the full while they were able. This recognition, in some cases, appears to have been a comfort after death.

Bids for independence may have been manifested in different ways, by travelling away from home, by being locked in the bedroom, by not eating, by having tattoos or by not using a wheelchair – they all have something in common. That is, attempts to take control of lives whose control has been threatened by illness and by medical intervention.

We also see that the life-stage issues which relate to the emotionally turbulent and transitional nature of young adulthood and the need to establish identity through independence and separation from the family, are exacerbated by the illness. Many of the manifestations of these bids for independence are documented by Brannen Dodd, Oakley and Storey (1994) amongst young adults who are not also struggling with life-threatening illness. For example, young adults expressing feelings of powerlessness through their intake [or lack of it] of food; by attempting to live independently; by taking risks and rejecting their parents’ ideas and culture. These authors observe that when such bids for independence are made, parents steer a course between care and control. This is a course that becomes even more difficult to negotiate when the young adult has cancer.

Giddens’ (1991) notion of the ‘pure relationship’ as one which exists only as long as both parties are in receipt of ‘reflexive rewards’ may be useful here in understanding the tensions played out under such conditions. The central tenet of the pure relationship as it relates to young adulthood is that, in this transitional stage, parents and young adults voluntarily renegotiate their relationship. The onus is on the young person to push for independence, and it is up to the parents to foster conditions under which the relationship can change but be sustained. The hierarchical aspects of the relationship are played down and parents become more like friends. Yet the circumstances described in this chapter throw the pure relationship into crisis.

Parents are struggling between maintaining recently negotiated relationships of trust, freedom and voluntarism, and reassuming the controlling aspects of parenthood reminiscent of an earlier life-stage. However, what is also apparent from the narratives is the extreme bravery of the young people who refused simply to succumb to illness, and fought quite literally for their lives. Even where conflicts have arisen, the terms in which such bids for independence are discussed suggest parental pride in the courage demonstrated by sons and daughters in such circumstances.