Preparing parents, both intellectually and emotionally, for the death of a child is closely linked to the parents’ future health, says an article published in this week’s Lancet Oncology (Special Paediatric Oncology Edition). We know little about when parents become *intellectually aware or *emotionally aware of their child’s imminent death from cancer. We know even less about how the length of time of their awareness affects bereaved parent’s risk of long-term morbidity.
Unnur Valdimarsdottir and team, from the Karokinska Institute, Stockholm, Sweden, gave 449 parents a questionnaire, which included questions on their perceptions of intellectual and emotional awareness time of their child’s terminal cancer. The parents had lost a child between 1992-1997, the questionnaire was given in 2001.
One quarter of all the parents said their intellectual awareness of their child’s impending death came less than 24 hours before the death happened. 45% said their emotional awareness came less than 24 hours before the child’s death. The researchers also found that adequate information from the doctor on the child’s fatal prognosis was the main predictor of intellectual and emotional awareness.
If a parent does not receive adequate information on his/her child’s fatal condition the risk of intellectual awareness time being very short (before the actual death) is three times greater, compared to parents who get the adequate information. They also found that if a parent did not talk to the other parent of the child about his/her impending death, the risk that the emotional awareness time would be shorter was much greater.
Fathers who spent a short time by the child’s bedside, had not talked to the child about dying, had a low education status, were more likely to experience short awareness times, the researchers said. These fathers are at a much greater risk of developing depression, missing work and taking drugs for psychological problems later on.
“The study clearly shows an association between actions of health- care providers within the paediatric oncology setting – specifically the practice of providing information about the child’s incurable prognosis and encouraging discussion between parents on the impending death – and the duration of time parents are intellectually and emotionally aware of the child’s impending death due to cancer. Moreover, the study demonstrates that parents’ time with emotional awareness is often very short which may imply increased risk for long-term psychological morbidity, especially for fathers,” the authors conclude.
* Intellectual awareness – the period between realizing intellectually (knowing in your head) that a disease is fatal, and the time of death.
* Emotional awareness – the period between realizing emotionally (knowing in your heart) that a disease is fatal and the time of death.
Written by: Christian Nordqvist