For the first time a major study is now being presented in which parents of children who died of cancer were given the opportunity to talk about their experiences. The findings are being published in several acclaimed articles and a doctoral dissertation at Karolinska Institutet in Sweden.
All parents of children who died of cancer in Sweden between 1992 and 1997 were contacted four to nine years after the death of their child.
One part of the study based on the massive material takes up the question of whether the parents had talked with their severely ill child about death. None of the 147 parents who had done so regretted doing so. On the other hand, 69 (27%) of the 258 parents who had not spoken with their child about death later regretted not having done so, most of them because they had realized that their child had in fact understood that he/she was dying.
"Caring staff should pay attention to whether a child is aware he/she is about to die, and in affirmative cases they should support parents who are reluctant to talk to their child about death," says registered nurse Ulrika Kreicbergs, who was in charge of the study.
The findings are being presented in this week's issue of New England Journal of Medicine, and they have attracted the attention of the journal's editorial as having remarkable potential for favorable effects:
"Pediatric oncologists can now say, based not only on their own experience but also with the support of hundreds of parents in the study, that no parents regret having spoken with their child about his/her death. If the child seemed to be aware of his/her impending death, which most of them are, then this communication is even more vital."
The study is part of Ulrika Kreicbergs' doctoral dissertation, which was defended on Thursday, September 16, at the Karolinska Institutet.
On Saturday, September 18, Ulrika Kreicbergs received The Schweisguth Prize in Oslo for another part of her dissertation. The prestigious prize is awarded by the International Society of Pediatric Oncology (SIOP) to a young researcher for the best scientific publication in connection with the annual pediatric oncology conference.
The acclaimed publication, which has yet to appear in print, deals with what factors in caring for the sick child have afffected parents most in the long term. Important factors can be the perception that the pain had not been sufficiently alleviated or that the moment of death was burdensome.
"One conclusion you can draw is that it is worthwhile to have staff present when the child dies," says Ulrika Kreicbergs.
A further publication from the dissertation shows that the parents were overly prone to depression and anxiety up to four to six years after the death of their child. This can be seen as a sign that the mourning process following the death of a child is more prolonged that the mourning that follows the death of other close relatives.
Source: Eurekalert & others
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