Adequately preparing parents, intellectually and emotionally, for the death of their child is associated with parents' future health, according to an Article published Online this week and in The Lancet Oncology special edition on paediatric oncology.
Little is known about when parents gain intellectual and emotional awareness* of their child's impending death from cancer, or how length of this awareness time affects bereaved parents' risk of long-term morbidity.
Unnur Valdimarsdattir (Karolinska Instituite, Stockholm, Sweden) and colleagues asked 449 Swedish parents, who had lost a child between 1992 and 1997, for their perceptions of intellectual and emotional awareness time of their child's fatal cancer. Parents responded to a questionnaire 49 years after their child's death, in 2001.
A quarter of the parents reported a short intellectual awareness time of their child's impending death (less than 24 hours), and 45% reported a short emotional awareness time (less than 24 hours) before their child's death from cancer.
The main predictor of intellectual and emotional awareness time for both fathers and mothers was adequate information from the physician on the child's fatal prognosis. Absence of information on the child's fatal condition tripled the risk of having short intellectual awareness, and cessation of curative treatment was also important in reducing short awareness time. Absence of information from health-care providers that a child did not have long to live, and not talking with the other parent about a child's impending death, were predictors for short emotional awareness time in both parents.
Fathers and mothers were also affected differently by some of the factors examined. For example, for fathers, having only a short time to spend at a child's bedside, not having talked to a dying child about death, and having low education status contributed to their reported short awareness times. Of note, the authors' findings suggest that short emotional awareness time puts these fathers at increased risk of long-term depression, absence from employment due to sick leave, or taking medications for psychological problems at follow-up.
The authors conclude: "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."
*Notes to Editors:
Intellectual awareness -- time between intellectual realisation (defined by parent as "knowing in the head") that a disease is fatal and the actual time of death.
Emotional awareness -- time between emotional realisation (defined by parent as "knowing in the heart") that a disease is fatal and the actual time of death.
Journal
The Lancet Oncology