The family impact of childhood cancer persist long after recovery

Five years after remission, three-quarters of children cured of leukemia believe that the disease still affects their family, a good negative part, show the results of a national survey on the role of parents in the hospital conducted at the request of the Plaster association.

Presented at a symposium entitled "Parents of hospitalized children: visitors or partners," organized by the association that helps families and professionals to manage the hospitalization of a child, this survey was conducted from November 2002 to February 2003 to 41 adolescents 13 years of age (19 years and 4 months on average), in remission for at least 5 years of acute lymphoblastic leukemia occurred in childhood.

It aimed to analyze the dynamics involved in the sometimes complex relationships between children and their parents.

During hospitalization, the presence of parents is always very important for the sick child. It avoids the feeling of loneliness and isolation, it allows the child to feel sick "like the others" and helps to fight against the feeling of dispossession itself against the omnipotence of cancer analysis psychologist who participated in the survey.

In the aftermath of the disease, adolescents tell the absence of parents as extremely anxious moments, especially the mother. Instead of the latter effect is dominant: it is the privileged interlocutor and confidante for 68% of teens surveyed, it greatly contributes to the life of the hospital and care such as drug distribution, toilet .. .

In contrast, the father's place is special, note the authors of the study. Based on the evidence collected, it is often in the background, away for hospitalization (no real or symbolic), struggling to find its place in the hospital, "point of care and mothering."

For parents, the sick child will question everything: family predisposition, their own failure to protect their child, their marriage. A parental guilt is grafted that adolescents who, once cured, regret not having been, at the time, sensitive to the suffering of their parents, with the feeling of having disappointed.

To protect them, teens avoid talking to their parents about their condition when they leave the hospital. History not to reopen wounds. However, the psychologist said, "In hindsight, it is necessary that the disease is recognized as such by the parents, as a proof that the child, the young person has successfully overcome [...] It is not about making as if nothing had happened. "

Adolescence is, more than any other, a difficult passage for the old sick child. The inevitable separation of the child from his family is made very difficult by the relationship established between the sick and frail child protective parents.

Moreover, at the time of the survey, only a teenager was no longer living with his parents during medical consultations where investigators contacted the teens, all were accompanied by their parents, they said.

In general, the survey shows that "rebuilding after the disease requires both the adolescent and his family an important psychological work." Three-quarters of teens surveyed believe that the disease still affects the family: 41% of these effects are positive (disease brings brings a different outlook on life ...), but 34% are negative ( guilt and suffering still present, stoking rivalries among siblings).